My Ehlers-Danlos Syndrome Adventure

Frozen Shoulder

2011-10-27T21:57:00.000-06:00

I have to wonder.....

This morning I woke up with my shoulder that I just had surgery on completely frozen in one place. I realized that it was in the 20s outside. I have to wonder if the weather has something to do with it.

I know that people talk about the weather effecting their joints and how they feel. I have felt this way before, but this was way over the top. I could not believe how bad it felt. I took meds.....and feel a bit better now.

The meds are a whole different matter. I took my regular pain med and a muscle relaxer to combat the pain. This is the first muscle relaxer since my surgery. I am not sure it was a good idea. The pain actually got worse as the pec muscle loosened up. Grrr

The weather is suppose to be warmer tomorrow. I am hoping to have more movement......at least what I had 2 days ago. I am coming to the realization that I may never have full motion again and that what motion I do get will take a long time to get. I can move my arm 90 degrees up in the front with assistance, but not out to the side at all. I still have not strength in my arm. A can of soda is about all I can lift....if that. I know it is going to take a long time, but it is so frustrating. I want my life back......so many things I want to do that I cannot do. My dad says I should write a book now that I can write again. Maybe that is an option. Only time will tell.

Still Here

2011-10-26T11:37:00.000-06:00

I am still here....still not able to do a whole lot.

I am starting to have more mobility in my arm, but no strength. I went to PT yesterday and had a different guy. I don't want him ever again. Michael (my usual PT guy) was out and Daryl had to take care of me. OUCH. I am not sure if he knows about EDS. He really pushed the limits and pushed them hard. Michael is usually gentle and does not push past when I say ouch. But Daryl did and I paid for it yesterday, last night and I am still paying today. Would it be bad if I asked only to see Michael? It is just the two of them and I don't want to make it weird.

I cannot do a whole lot, but some things are getting easier. I can dress myself, but not undress myself (my husband likes that....he gets to help LOL). I did manage to cook a meal or two, but cannot get things out of the oven.

While I am making improvement each day, it is still hard on the mind....I stress because I want to do so much. It is extremely frustrating. There is so much I want to do that I just don't have the strength or dexterity to do. One of my passions is scrapbooking and I lead a stamp club each month. I have not been able to get ready for the next one or the Christmas card workshop I am doing in November. I am going to have to get some help. Which is hard too, because I like things done the way I want them and it is hard to tell others exactly how you want it without feeling bossy. I am able to hold a book now...so at least I am getting some reading done. Since I have better hand function, I think I will start crocheting this week.

Trying to keep positive. Wish me luck on that front. It will take time to get back to "normal" and I need to keep that in mind.

Long Night

2011-10-11T09:29:00.000-06:00

I know there are ups and downs, but this sucks. Yesterday things were so good. I am sure that is why I hurt today. I bet I over did it doing things to take care of the boys. I really want to help them do this and not have them grow up too fast having to take care of mommy. But having done so much yesterday I am going to have to have them help me more today.

I did not sleep well last night because of the pain. Not sure how I can find some way to actually be comfortable and get some rest. I do sleep better with pain meds on board, but having two boys at home by myself makes it hard to take pain meds. I am sure there at people who do it, but I just cannot bring myself to do it. What if I take it and then something happens to one of the boys? I would not be able to drive. While I feel that they don't impair my thoughts, what if I am wrong? I cannot imagine making the wrong decision in with regards to them. There is always that chance.

Today is a lay low day. The boys are still running low fevers so I decided to keep them home today. It makes my life a little easier not having to take them out. A major reason for not taking Ben out is because I do not need him to get sicker...he is on the verge of a hospital visit and I am trying to keep it away. The longer I quarantine us all, the less like Ben is to get something that pushes us over the edge on that front. I am not sure I could handle that.....arm not working right, Ben in the hospital and Matt not home. Yeah, could not do it. I know my limitations.

Pain and Illiness

2011-10-10T09:50:00.000-06:00

I knew I was on the verge of a cold last week. I knew it was coming....I kept thinking this sucks. My arm/shoulder really hurts and now I am getting sick. I don't know if that is true.

I am wondering if my shoulder was hurting worse because I was getting sick. Through this weekend while I have battled the hot flashes, cold chills and aches.....I realized that all of these things started in my shoulder/arm. Is that weird? Is it kinda like feeling the weather?

I guess it could have been the weather too.....we had a huge cold front roll through this weekend. We had our first frost of the year as well as a few flakes. Those things hurt me too...I just don't know.

So, I know that I am feeling things in my shoulder/arm more than the rest of my body. If it is the cold I am fighting or the cold weather that came through, I will never know. What I do know is that this weekend has taken it out of me. My shoulder hurts and my chest hurts too.

I think I am on the mend....I woke up this morning with less pain than the last week. I am not sure if it is because the cold is subsiding or the weather warming up again.

My dear friends with EDS......if you have any ideas, please let me know so I am prepared for the future. I might not be able to avoid all of the symptoms, but I can prepare for them at least.

I can't do that

2011-10-07T09:37:00.000-06:00

Matt has had to help me with so many things....I have to tell a funny though. It was the second or third night and Matt made an awesome dinner with chicken breasts and rice. I was not feeling well when it was dinner time, so I waited and ate after the kids went to bed. He warmed it up and brought it out to me and set it on my tray with a knife and a fork. Seriously....the chicken breast was whole and he gave me a knife to cut it up. My mom and I broke out in laughter and Matt just looked and us and said, "What?" It was kinda funny. He has really had to learn to help and try to understand the things I cannot do.

He is amazing. It is slowly getting easier on all of us as I am getting better and have more movement. It is still very painful for me, but better.

Shoulder Surgery

2011-10-05T13:43:00.000-06:00

So, it has been just over a month since my shoulder surgery. I really hope it was worth it. It has been a long road.

I was in so much pain the day of and night after. The doctor did an orthoscopic entry to begin just to see what they were going to need to do. Then they actually put an incesion in my armpit area. It comes up the front and it about 3 1/2 top to bottom. It was extremely painful. I was given what is called a party ball after the surgery. It is a nerve block that was left in my shoulder for 3 days. I also got pain meds perscribed too. When I got home from my surgery I was seriously sick. I could not keep anything down. I vomited in the recovery room and for the rest of the day. Matt was so nice and kept trying to help me eat little bits and drink little bits of water. I kept telling him that my shoulder hurt and I wanted pain meds. He was right when he told me that I should not take them until I could keep something down. Finally, the pain got so bad that I screamed at him and he gave me some. I kept them down for the most part. That was about 10 PM. I noticed then that the party ball that was giving me the nerve block was leaking.

The next morning I had a post-op appointment with the PT and the nurse. I told them as soon as I walked in that the block was leaking.....they were on the phone with the surgical center in a matter of seconds. I was told to go there immediately after my appt. The PT guy was great. I was still in a serious amount of pain and he was kind in being careful while he was showing me the three small movements that I was to do for the next 3 weeks. He told me not to move it unless I was doing these three things (turning my hand back and forth, up and down, and try to get my hand to my mouth). The nurse was not so nice. She ripped the steri-strips from the small incesion off and replaced them. She went to grab the ones on the big incesion and I about came unglued. It hurt so bad. (Remember that at this point the party ball was not working and I had only had one pain pill, or so I thought.) I did not let her take them off. She was not nice about it. You have to understand that I had steri-strips on was because with EDS, stitches could actually rip through the skin and not stay....causing even more problems.

We made it out of there pretty quick. From there we went to the surgical center. I was seen right away and they "flushed" the block (at least that is what they said). The block was moved around some and I was sent out. It started dripping in the waiting room so I asked them to look at it again. They were unable to do much and I was told that it was not necessary. So, I left and went back home. When I got home Matt came to the realization that he had not given me a pain pill the night before, but an antibiotic instead. Ugh....no wonder there was so much pain. No pain meds and a block that did not work. Oh well, I started getting pain meds as soon as I got home, but the block never did work.

The next couple of days I just hung out. The brace was cumbersome so I could not do a whole lot anyway. After about a week, I was able to start taking less pain meds and was able to pick Max up from school, but not much more.

It has now been a month and I am just getting back on my feet. I got to take my brace off the end of last week and I am so thankful for that. I am still in a bit of pain and movement is still not very easy. I can use my hand, but barely lift my arm up. Stinks, but works for now. Matt is still doing a lot around here that I cannot do. I am taking the kids to school and picking them up. I also went with both of them to the pumpkin patch on school field trips this week. It was horrid......I was able to keep up and smile for the kids. It really was fun, but I was done by the time I got home.

My first physical therapy appointment was this morning. We are taking it super slow. I went in, was given heat, 2 stretches, and then ice. That was it. Nothing else. No exercises. I am not to lift anything more than a cup of coffee or can of soda. I can use it as I see fit, not past pain or adjusting my posture to accommodate movement. It is going to be a long trek back and painful. I am going once a week for awhile and then we will reevaluate it and see what is next. I think I will be seeing the therapist for 6 to 8 months.

Matt will be gone next week and I am nervous as can be. I know that I can do it and I will work through the pain, but I am still nervous. Good thing for me is that it is a 3 day school week. That means I only have to go out for those 3 days.....if I am having a rough day, sticking to home is much easier. I also have two great little helpers. I am sure we will work it out. Besides, I am sure that Matt can use a break, even if it for work.

I am hoping to blog each day to chronicle to come back from my surgery and share with others with Ehlers-Danlos so they know what to expect.

Birthday dinner

2011-08-24T12:12:00.000-06:00

Tonight I am going out my friend Becki for my birthday. I am happy to be going out with a great friend, but it reminds me again of my age.

I know that 36 is not that old, which is part of the problem. It makes me kinda sad that my body is giving out so quickly at such a young age. I have good days and bad days, but it is still hard. The surgery coming up is a bright light in my life. I am truly hoping that it will help with stability and pain. My shoulder is my most troubling problem right now. I am hoping it will not be so bad soon and then I will have minuet things to worry about. Popping and cracking has become daily parts of my life. I have not been dislocating every joint, which is a relief. My shoulder dislocates every day. I think that once I get it fixed, I will be alright for awhile.

36 is not a big deal. It just pains me to be so young with two young children and having limitations on what I can do. Not only with my kids, but everyday things too. I am still learning what I can and cannot do. Oh well! It is what it is.....just gotta figure it out.

Clean toliets

2011-08-22T14:23:00.000-06:00

I can tell I am getting ready mentally for my surgery. It is kinda like nesting before having a baby. The living room got a total once over.....under the couch and fire place cleaned too.

Today I spent 2 hours cleaning the 2 bathrooms upstairs. I am hoping to get the one downstairs done today. I am thinking if I give everything a good once over before my surgery then, it won't be near as bad when I don't get to it for the 6 weeks I cannot do much.

Tomorrow my room gets a good cleaning. The kitchen is semi-clean and I have some time to get that done. 10 more days of nesting....at least the house will be clean.

Catch up

2011-08-21T21:42:00.000-06:00

It has been several months (okay quiet a few months) since I have posted here. It has been an amazing year....mostly down, but that is okay. It always makes you stronger.

About a month ago, I thought I was having a heart attack. It was the most painful thing I have ever felt. My chest just hurt. I did go to the ER and of course as soon as the ER doc realized that I had EDS there was a battery of tests. I was happy to find a doc that knew what it was, but was scared by all the tests. I was told that there were some serious things it could be. I could have had a bleed in my heart or a tear. It was a scared bit while they did all the tests. In the end it was not anything serious....well, in comparison. I was told that it was costo condritis.....basically with EDS the cartilage does not renew itself quickly because of the collagen problems. So, my ribs were pulling away from my breast bone. PAINFUL! Turns out there is nothing they can so for it. Takes time to heal and even longer for me. Horrible 2 weeks of pain and very little activity.

On the 1st of September I am going to have shoulder surgery. My right shoulder has been dislocating frequently. I finally found an orthopedic doctor who knows EDS and has done surgery on others with EDS. Dr. Wienstien has done 10 other shoulder surgeries on folks with EDS, with a fairly decent rate of success. I am pleased to have him doing it......he is also the doctor for the Olympic basket ball team and the Colorado College hockey team. I am so lucky to have fallen into this. He only takes referrals and I am so thrilled.

I am terrified to have the surgery. It is a scary thing for me. I am not looking forward to having them cut me open. No, really cutting. They are not going to be able to do the arthroscopic surgery they usually do. The doctor is going to have to cut open my shoulder. Actually, it will be in my arm pit but there will be a scar on the front too. Cutting anyone with EDS open is dangerous because of the lack of collagen reproduction at a normal rate. So, it will take longer for my cut to heal....not to mention the actual shoulder work. I have been told that I will be in my arm "thing" for at least 6 weeks and the physical therapy will be longer. I have read some accounts that say it takes more than a full year to get all of the motion back and some still have pain.

At this point, I am scared to do it, but hoping this will help. I was told that if I don't do it, I will have pain and it will get worse. If I do it, then there is a chance at a better life with my shoulder and pain. Hopefully it will be for the better, but I am sure it will not be worse.

I will check back in as I get closer to the day. I am scared and will be looking for support here.

New Blog

2010-11-01T18:12:00.000-06:00

I have started a new blog.....I will only post here if I am having EDS issues. Right now, I seem to be having more fun blogging about my boys and daily life here in our home. So, if you are following me...for fun or to see what is going on in my world.......please go to the following blog and become a follower.
http://snipandsnailandpuppydogtail.blogspot.com/

Ben Heart Update

2010-11-01T17:11:00.000-06:00

I just wanted to post a quick update for all my family and friends who have been praying for Ben.

I spoke with the cardiologist today. They got the results from the 24 hour heart monitor. He said that Ben's heart rate is elevated, but it did fluctuate. The important thing is that it did change with activity. Ben's little heart just runs like a hummingbird. His heart function is normal. The doctor would like me to take Ben to see the Heart Rate specialist in 3 months. I was told that Ben's high heart rate is abnormal, but since he is doing better and it is a constant high we are not going to push the panic button now. BUT, it is not something we are just going to forget about either. So, we are going to monitor him for problems and see where we are in 3 months.

We spent the weekend out in Holyoke, which usually triggers all the problems we have with Ben. (We have actually debated not moving because of it.) This time Ben was great. The rest of us are a little snotty, but not Ben. He is doing super. I think that after seeing the pulmonologist/allergist and getting his allergy medicine, we are doing much better. I am so happy to not be worrying about him after this trip.

I am starting to feel better about Ben and all the health problems we have had this summer. I think we might be on the other side of this thing.

Thank you all for your support and prayers. I fully believe in the power of prayer. Thank all of you and God for the wonderful outcome.

miserable

2010-10-27T16:42:00.000-06:00

I feel down right miserable. I have got some cold thing that is killing me...okay that is exaggeration. But, I am feeling pretty bad.

I did manage to get through Ben's Halloween party. It was awesome. He is going to be Tigger for Halloween. He loved it and was so cute for his party. He did great trick-or-treating in the school. But, he did get rather warm...his poor little cheeks turned run poor kid.

I love my family, but I am ready to sleep.

I Can

2010-10-25T10:12:00.000-06:00

I can be a good Mom and Wife. I feel as if I have been swimming in a pool of syrup, keeping me from being who I want to be.

My house is not in the best condition that it could be, but it is getting there. I have never been a great housekeeper. And, it has really bothered me. I have let it get out of hand at times and then don't know where to start. A dear friend turned me onto Flylady.com and that has helped tremendously. It is a great guide to find a place to start. It has also helped me to start at one place and not feel like I have to do it all at one time. I now have a routine to keep the basics clean and I can keep going to get through the rest of the junk. It is going to be so nice to have my house clutter free by Christmas. It is also nice because when we do decide to move, it will be great to be able to pick up and move what I want to take and not move junk.

I guess I am feeling pretty good because I got the boys to school on time (fed and dressed well)....picked up a package from a friend....put together a great dinner in the crockpot....empty the dishwasher....and start a load of laundry. All of this before 10AM. I am feeling pretty good about it. It also helps that everyone slept until time for the alarm to go off. Yeah...it was awesome.

I am feeling great....life is good. God is great and I give him thanks for all that he has given to me.

Dinner:
http://family.go.com/food/recipe-cp-629856-chicken-and-sweet-potato-stew-t/

Home

2010-10-24T21:12:00.000-06:00

Home again, home again, jiggitty jig.

It is nice to be our house again. We went to Holyoke for the weekend and it was eventful. We went and looked at houses. There is nothing out there that I would like to buy or live in. They all need a bit of work. I am so looking forward to moving as soon as we can, but I do not want to jump into a house that needs work.

We still need to put our house on the market.....and I was all for it, but now I am not so sure. I want to scream because I am so confused. I want to make sure that Ben is healthy. So, not only is that a problem, but I don't want to jump into a house. I want to make sure it is something I want to live in for the rest of my life.

I checked the price of our house on Zillow.....WHAT!!!!! It is way lower than I thought it would be these days. We went from a 3 bed 2 bath to a 5 bed 3 bath and our house has only appreciated $8,000 since we bought it....and we put all that work into it. We might be able to get what we put into the basement, but nothing else. We have done so much to this house. How can this happen....we have been here almost 6 years.

I want to move out there to be near the family and friends. We really need the support with all that is going on in our lives. Ben could do worse there, but we do not know. I know that, for me, that it would be better for me. I can use all the help I can get. I have realized this weekend that things are harder for me than I thought. My hands are getting worse. My left hand feels like I have lost the padding on the first and middle finger. I am also having massive pain in my right thumb area.

I know that I am really rambling and not sure what is what. Nothing makes sense right now. I want to move, I want to do what is right by my family, I want to be near our friends, I want to live in a house that I can live in for the rest of my life.

Pastor reminded us today that we have what we have by the grace of God. God will watch over all of us and give us what he knows we need. I am giving this up to God and praying for some guidance.

Not sure

2010-10-20T19:15:00.001-06:00

It has been one heck of a day.........

It started off well enough. I took the boys to school and came home to enjoy myself. I started on my cross stitch and something reminded me that I needed to call and get the windshield replaced. I called and got it set up....then I was told I had a $250 deductible for the windshield. WHAT!!!! When I switched the insurance to USAA from State Farm, I was told that the windshield was covered under the glass coverage. I spent an hour arguing with them about it. Ended up I need the windshield replaced before we go to Holyoke tomorrow. It is so pitted that I can hardly see through it at dust. So, I filed a complaint/claim so I might be able to get the money back.

I then remembered that I needed to call the Vision Insurance to make sure I was covered. I called and was told that there was no vision on Matt insurance. Insurance that we are paying through the nose for these days. I asked questions about the AOG's policy and then was told that they do not have vision listed on the things that they are covered. I called the AOG and talked to Janice then. She said that she had just been on the phone with them earlier that day and the underwriting for the AOG insurance had not been completed yet. So, if I want to get my eyes checked and my new glasses, I have to pay out of pocket and get reimbursed. Well, how the heck can I do that? I just paid $250 to get the windshield fixed....so, now the windshield will be new and pretty to look out, but I still won't be able to see clearly because I do not have my glasses.

I went and picked Ben up from school and we had lunch. After I put him down for a nap, the peds office called and let me know that I needed to take Ben in to get his blood work done today. I was told that the Quest office was the place to go for my insurance. So, after freaking out a minute about my 3-yr old having to get blood drawn. I started to make and appt.....I first thought about doing it after I picked Max up, but then decided that it might be more traumatic for Max to see it than to have it done. So, I made and appt with Quest for 2:10. I got there about 10 minutes early, but they made us wait. When I did get up to the desk to fill out paper work, I was told that they did not take my insurance. So, I had to go somewhere else. At least quest told me where to go and it was not that far away. Ben and I rushed over because I had to pick Max up at 3:00. We got to the office and the woman behind the counter was so stinking slow I thought I might just loose it. Finally she told us to come back....guess who was drawing the blood. HER. Finally she got started and Ben was a champ. He sat in my lap and watched as the needle went in and the nurse fished around for a vein. 4 vials later we were out the door with 2 urine collection things. (still not sure how was are going to do that out of town this weekend)

I did make it to school to pick Max up in time. Then, realized that today was the fundraiser pick up day. AAAHHHHH....I could have gone earlier and picked it up, but since it had slipped my mind I had to stand in line with all these kids and moms. 20 minutes to pick up one little bag of candy my mom ordered for the boys.

When I got home I started to cry from the sheer pressure of the day. Max made me feel horrible for it when he started to cry too. I stopped, but still zoned out a bit. Until, I realized it was 5 pm and I had not even thought about dinner. Chinese it was tonight. Not healthy, but at least I fed them.

They are currently picking up their things before bed. I am looking forward to that so I can finally let it all out and really cry. It will do me good to just get it over with so I can start again tomorrow.

So, I am not sure if it is a good day because I handled it all without a major break or if it was a bad day because I had to handle all of it.

Ben

2010-10-18T21:42:00.000-06:00

So, we are home and the boys are tucked in bed sound asleep. It is nice to have a quiet night. I might be able to relax/release now.

I took Ben to see the Cardiologist. It was so scary. The doctor was very nice so it was easier. He had an EKG before we saw the doc and he seemed pretty happy with it. We chatted for a few minutes and I gave him background and history. Freaked me out when doctor decided to do an ecocardiogram right away. We got to see his heart on the screen. From my lay person's eye.....it seems that it was doing all that it should. We were able to rule out EDS for him and masses or tumors. That is all good.

Tonight and for the next 24 hours, Ben is wearing a heart monitor. It is a little creepy to see him walking around with this little box attached to him. It does not seem to be bothering him any.....he ran around with Max tonight acting like nothing happened. It was kinda funny to see him keep stopping to move it up and then go again. Poor guy.

I am happy we have ruled some things out, but it is not totally reassuring. There are so many other things it could be. The doctor thinks it could be a heart infection. He said that we are starting with the easy tests...it will be less traumatic for Ben. Which is great, but I wonder if it will get us to the end result soon enough. I know that we are ruling out the things that are easy to test for...that is great....why can't we test for it all? We will most likely be getting blood drawn next week to check for infection, thyroid and a few other things.

Wait and see.....give it to the Lord and he will protect us.

Fall?

2010-10-18T12:23:00.000-06:00

It is nice and chilly today. AND, I love it! I did not turn the furnace on, but we did turn the fire place on this AM to warm up the main part of the house. Now, it is perfect. The boys are not so sure....it is kinda gray and they really wanted to go outside and play. Good for them it will in the 70's tomorrow and we will be out playing.

We have the cardio appt today and I am nervous, but as my dad says. Don't borrow trouble. It will all be okay, and if it is not, we will figure it all out together as a family. And, I mean all of the family....Me, Matt, and all the parents on both sides. Everyone has been so supportive of all that is going on. Thanks guys.

Matt is off doing his thing and both of the boys are at school. It is awesome to have some quiet time to myself. I am not running around shopping or having to do much. I am happily sitting her with my coffee, watching the Today show and writing. Yeah....a few minutes to myself before the running of life starts again.

So much for time to myself. Ben's teacher called to let me know that Ben had pooped on the floor and stepped in it. I guess he was really upset....so off I went.

2010-10-17T20:29:00.000-06:00

Not sure what to title this. It really is just going to be a smattering of thoughts......

I know I just blogged about the Disney thing. But, damn, it really bothers me. Well, not the Disney thing exactly. I had and have so many plans. When Matt and I met, we talked about doing several things together. 1st - move to Holyoke
2nd - go to Paris
3rd - go to Fiji
2 and 3 might be flipped. But, they are things we wanted to do. Matt is 6 years younger than me....I knew that I would get old first, but I thought I would be able to have lots of fun/life with him before I got OLD. Now, I am not going to get mentally old, but physically before I thought. Really, Matt won't even be 30 until next year. So, by the time he is 35, he could be pushing his wife around in a wheel chair. Really? It just does not seem fair. I love him so much and really wish/hope it is not like this. He deserves a full happy life.

I do know that traveling is not high on his bucket list, but it is on mine. He would be very happy to move to Holyoke and never leave again. I am happy to go to Holyoke, but I still want to see so much more. I want to be able to walk through the castles in Ireland, swim in the ocean in Fiji, climb to the top of the Eiffel tower. I know that we are working hard to pay off our debt and I want that too. But, do I want that and put off traveling until we can pay cash with the possibility that I may not be in good enough physical condition to do it? I am just not sure how I feel about it all. We will have all the debt paid off in a year or so. We are going to Disney no matter what...might take 18 months, but we might be able to pay all cash for the trip. But, then how long will I have to save to go somewhere else?

I am trying to be positive about my condition....but I trying to be real about it too. Knowing the possibility of not being able to do it later, makes me sad. There are so many things I want to do. There are so many things I want to do....BUT, I need to do them before I cannot.

I do know that we will be in a better situation in a couple of years..... I am hoping that once we hit that point we can take a major trip every 2 years. That is my plan. I have not told Matt yet, but that is my plan. I will convince him over time. He is so wonderful to me...I am sure he will not be hard to win over. I know that he does not totally understand how I feel or what is going on with my physically, but he does try to help me out whenever he can. And, I know that my happiness is important to him and I appreciate him. We will work it out together.

Matt is a wonderful man and I am so lucky to have him.

DISNEY

2010-10-17T17:09:00.000-06:00

So, as a family, we decided that we are going to Disney. Everyone is so excited. We are all looking forward to it. We have started a jar with money in it. We are going to save and save money until we get there.

I took the boys to the bank with their change from their piggy banks. They were so proud to tell the teller we are saving for a trip to Disney. We bought the jar at Walmart and put pictures of the Disney characters on it. The boys decided that they were going to spend some of their on toys and put some in the jar. I am so proud of them....they get that we are wanting to do something in the future and they can still get something now. It is awesome to see them learning to save.

It is great that we are all saving BUT, dang, it is still expensive. I started looking around on line to see how much we would need to save. I decided that we want to stay in the park, get park hopper passes and the food plan. All of that including air fare is going to run the family $3500. We would really like to pay off the CC before we go and don't want to go into more debt to pay for it. Having said that, I really want to take the kids. It will most likely be about 18 months before any of that happens. Maybe longer.

I want to go as soon as we can. I want to go sooner rather than later because I am not sure how I am going to do later in life. I already have so much pain on a daily basis. I know that I can over do it easily and it scares me. I am not taking pain meds at home (at all). I think I may have to take it daily while we are there. I am really hoping that even though I do that I will be able to function mentally and enjoy the trip. Without meds, I am wondering if I can function physically. I am 35 and I don't want to be in a wheelchair when we go to Disney. That does not seem like fun to me. I don't want to take away from my boys enjoyment of the experience. Matt likes the idea of a wheelchair....we will get to go to the front of the line and go first since I am a invalid. The whole idea sucks.......

I want to be able to go to Disney and enjoy it with my kids. I want to go now while I can, but I don't want to put my family finances in jeopardy either. It is hard to decide what I should do. Being in pain and being sure that life will bring more pain (maybe even worse), I want to live and enjoy what I can with my family while I can. What do I do???

Almost

2010-10-13T20:27:00.000-06:00

Today is a good day. The basement is almost completely finished. BJ has been over finishing the drywall, painting and doing all the little odds and ends that need to be finished. I am truly hoping that by the middle of next week I will be able to have all the furniture back and everything organized.

Since Matt has moved 90% of the things from downstairs to the garage. I am hoping to get all the things put away and set up just the way I want it to be. I am going to be getting rid of things again. I know that I am going to get rid of some furniture that we really don't need. I am really starting to work through, in my head, what I really want to move with me to Holyoke.

I was really excited about getting the basement finished....it is one more step closer to our goal of moving. Me, not good at waiting for things, I started looking for houses in Holyoke. There are two country homes I really want to look and buy. But, Matt is the cool calm on in our house and reminds me that we have to wait.

Things are just not going to be totally in order for us to be doing something that drastic so soon. I am thinking that I will take the rest of the year to get the house all cleaned out and in order. I am hoping to put the house on the market in January. House sales are so slow that I think putting it on the market sooner would be better for us. If it sells before we are ready to move....looks like apartment living for us. It would be tight quarters, but I don't see why we could not do that. We can move things to Grandma's house or to a storage unit if we need to. Might even save us some money and we could make good interest on what we get out of this house.

It is really true that Max should finish out the school year here. I know what it was like to move schools during the school year and more than one time. So, I am going to sit tight and let Max and Ben finish the school year here.

Hopefully, when we are ready the plan will be there. God has a plan for us and we will follow his lead. I just need to learn patience and that has never been my strong point.

So sad

2010-10-11T21:47:00.000-06:00

I have let my feelings get hurt, yet again. I belonged to a great meetup group. Most of my friends belong to the group. I have had a falling out with the organizer, but I did not do anything to get myself kicked out of the group. Too bad, that is what happened.

I am sure that she will read this. And, I just don't care at this point. I have said and will not say anything that is not true.

I joined this group two years ago, or so. I made some really great friends in the group. I paid my dues like everyone else in March. It is suppose to be for a whole year. I know that I am being petty, but I want my $4. I did nothing wrong according to the group rules. All I did was have a fight with the organizer. After the argument and falling out (end of friendship too)....I kept my distance, but liked being part of the group. I made other friends in the group and would have liked to stay in. I was not bothering her or doing anything that would have upset her. Guess she just did not like me there and decided to kick me out.

I am so sad that this happened. I am not upset that she and I are not friends anymore....I am not truly upset about being kicked out of the group. I am upset that she took a connection away that I had with some friends.

I thought the petiteness was over, but I guess I was wrong.

This person has really hurt me and I have seen that people can be horrible. BUT, I am not going to let this one person put me out. I still think that people are generally good. I will continue to think that, despite some people.

Hmm

2010-10-10T09:23:00.000-06:00

We did Ben's allergy testing on Friday. It was not a bad experience. He only cried once....it was about 1/2 way through and I think it just itched so bad he was upset. We sang another song and he calmed down.

It was quiet an experience for Ben and me. They used marker and numbered Ben's back according to the number of the allergen they were testing. They made little scratches with the liquid. There was a positive and negative. The positive, obviously, came up.....but the cat scratch came up even more. Poor little guy is certainly allergic to cats. By the time it was all done, the cat scratch was as big as a half dollar. He also reacted to dog, feather, one kind of mold and corn pollen. He was a real trooper and got a huge bouncy ball for behaving.

I asked them to check the corn pollen. I worry about moving to the farm with all his allergies. Some of his allergies can trigger his asthma. That is the only scary part about all of this. I asked the doctor his thoughts on moving out to the farm. Dr. Chaplan told me that as long as we live in Colorado or near by states, it won't matter. He said that pollens can travel up to 200 miles, so even if we lived in a cement jungle, there could still be pollen and allergens. Therefore, the plan to move is still on.

We now have a preventative program to keep Ben's asthma and other breathing problems. We are doing Q-var twice a day and children's chewable Singular at night. We have albuterol for any rescue times. Hopefully this will keep his breathing normal. Dr. Caplan thinks that we might be able to keep the allergies and asthma in check with the new plan. That would be so awesome.

Now we are going to have to see what the cardiologist says. We had thought about going to Holyoke this weekend so I changed his appointment. We are now going on the 18th at 1:30. We will have to see what happens. I am beginning to think that the heart rate was related to his breathing problems. We have been checking his sp02 and heart rate. Both seem to be more normal now. I am thinking that the little guy was just struggling to BE at that point and his body did everything it could to make it happen. I have always known he is a fighter.

God has his hands around Ben and will continue to protect him.

Here we Go

2010-10-07T16:13:00.000-06:00

Today was Max's appointment with the Ortho doc. Dr. Seigel is so proud of Max. She said that his rate of healing is amazing. He is so far beyond what she expected. He will be ready to get his rods out before Christmas. Okay, so she said December or January and I begged for December because we have met our family cap for the year with the ins. Let them pay for it. We have paid plenty in premiums, so why not take advantage of the system, RIGHT?

Tomorrow is the beginning for Ben. We got to the allergist/pulmonologist. We will get his lungs looked at and then all the allergy testing. I am so not looking forward to that part. I cannot imagine all the pain the bugger is going to go through. I am pretty sure his is allergic to most everything. Scratch tests cannot be fun.....can you imagine being 3 and not understanding what is going on? I feel for him. I feel for me to have to comfort my baby all day tomorrow. It will be lots of movies and Mommy cuddle time. I am just praying that this testing does not trigger his asthma/breathing issues or his heart problem. If this truly is the cause of all of his problems, it could be an interesting visit. Think they have what is needed for someone to is severely allergic to something? Surely they will be prepared for anything right? What if he stops breathing because of something they do?

I am really terrified to start all this testing....can you tell? Monday is the cardiologist. I had the fleeting thought of going to visit Granna and Grandpa this weekend since we have a 3 day weekend, but then I remembered the dreaded cardio appt. I was really looking forward to unplugging and go away for a few days. It really was just a thought in my head....never got a chance to mention it to anyone before I remembered the cardio appt.

Me, I am just plodding along. I was suppose to do stamp club this weekend, but we were suppose to be getting the basement finished so I thought I would not be able get into my scrap room. Well, that did not happen.....the guy who has suppose to be finishing the basement for over a year, has put me off again. He was suppose to be here Monday AM and showed up with a story about having a place to finish in Woodland Park. He said he would show up this morning and be able to get it finished this week. Ha Ha Ha....he did not show up again and I have not heard from him. Pissed off is what I am becoming with the whole thing. So, that leaves me having changed my plans for him and now....the basement is not done and I changed plans. Grrr.

I do not have anything planned for the weekend now. Matt had a meeting Monday for wrestling, Tuesday for Drupal and now again tonight for wrestling. I know he has to do these things.....but, I am starting to wonder what I am going to get to do. Scrapping at Bobbie's is out since we are not talking anymore. I don't want to go to Archivers because that costs money (and I am trying to be on a spending freeze). Being on a spending freeze prevents me from doing a number of things. I could go to the basement and play in my scrap room, but that is not really a get away because the kids come down anyway. I am debating going back to weight watchers....I have gained 10 pounds and none of my clothes fit now, but again, that costs money. SO, what is there for me to do and where.

I am starting to feel really pent up, frustrated, scared and angry. And, unfortunately for the family, it comes out with me yelling at everyone for every little thing. I know what I am doing when I am doing it, but I am so in the moment that I just cannot stop myself some times. I am trying hard to just give it over to God, but it is harder than I thought. Knowing something and feeling something are two different things....I totally get what my dear friend Shannon is going through now. I know that things will all work out and that God has a plan and that I should just hand it all over to him. BUT, my heart is still breaking and I am still scared for my little one and angry that I have to deal with it all.

Normal life?

2010-10-05T20:57:00.000-06:00

I have scheduled several of Ben's appointments for the end of this week and the beginning of next. That leaves me in a waiting pattern. I am not very good at this part of the game. I am a right now type person. I know that about myself.....this is killing me. I am horrible at waiting, but even worse at waiting to find out, what, if anything is wrong with my child.

I am trying to keep life going as if nothing were wrong.....Yesterday I went to the pumpkin patch with Ben and his preschool. It was so much fun. He got to pick a pumpkin for free. Catch was that he had to be able to carry it out of the patch by himself. He had an enormous amount of fun, but I could tell that towards the end he was struggling. He finally said that he just wanted to go home. I carried him for the end of the trip. He was good sport and had a good time while he felt well.

Today we tried to keep things quiet. He did really well until lunch. Well, it was almost lunch time and he started to melt down. I brought him upstairs and he decided that he did not want to eat. He just went to bed and laid down. He slept for several hours and then never asked for lunch after that. It was sad. I know my child is not himself when he does not want to eat. After we picked Max up from school, he seemed okay. I did take him to swim lessons this afternoon. I want to keep his life a normal as possible. He loves doing it, so why take it away from him while he still can??? He did really well, but coughed a lot. He said that his chest hurt a little afterwards, but he was still smiling.

I brought him home and fed him dinner. He seemed happy....but with a raised heart rate. I put him to bed with a 124 heart rate. He was not doing anything. I just fed him and we watched tv. I am not sure why his heart rate was up so high. It makes me so nervous.

Tomorrow I take Max to the pumpkin patch and Ben has preschool. Not much else going on....let's keep it that way. Thursday I take Max in for his arm appt and then we do allergies for Ben on Friday.

Life is Good.....God watches over us all.

Okay

2010-10-03T09:35:00.000-06:00

I have has several days to digest the idea of Ben being sick. I have known he was sick, but possibly needing serious care.

I have taken the time to do some soul searching on the whole thing. And, I have come to several conclusions. My little boy is strong and he is a fighter. I do not think there is much that he cannot fight. He is such a happy little soul, even when he is not feeling well. He was in the ambulance with O2 and when the paramedic asked him how he was....Ben said, "Great." He is such a trooper.

As I have been praying about this, I have been thinking about God not giving us any more than we can handle. I have been feeling very selfish about all of this. I keep thinking that God will not give ME more than I can handle...when, in reality, I should be thinking....God will not give Ben anything he cannot handle. This is not happening to me...it is happening to Ben. While I feel the pain and want to protect my child....Ben is the one who suffers. He is the one with the physical pain the hurts is little body.

I feel pain. I feel the emotional pain of seeing my child hurting. I feel the pain of not knowing what is wrong with him. I feel the pain of all the possibilities of what may be hurting him. I feel at a loss as to why it is happening to my child. While I am feeling all of these things, I realize that those around me have had problems with their children too. We have dear friends who have gone through similar things with their little ones. I, now, understand (or sort of) how they must feel. With all the emotional pain I am going through, I finally understand how these brave parents must feel.

I have had the several days of crying and hiding from the issue that I think I needed. Friday, I slept for 7 hours during the day and then yesterday, Matt let me sleep in until 10AM. I know that one way that I hide from things is to sleep. Sleeping means that I do not have to actually think about things. It is just blank time that I can waste without feeling. I have hidden from the world and now it is time to get out and be "normal" again.

Yesterday I went to a class to learn to crochet. I had a great time and learned lots of fun things. I know enough now to be dangerous. I decided that I am making a blanket (with the 3 stitches I know). I bought the yellow yarn with the intention of making it for my niece Maggie, but I have decided that it might just be for Ben. I think he can love on it and know how much Mommy loves him. It will always be a part of me that he can have with him. Sounds dumb, but it is making me feel better right now. Ben has been watching me work on it and he is really excited. I might finish it by Christmas with all the other projects I have to finish.

In short, I have felt sorry for myself and that has passed. I have wanted to just think about anything else and that has passed. Now, I have turned it over to GOD. HE has a plan. GOD knows what he is doing and we will follow his plan. While I might not understand it all or know why things are the way they are, I am going to put it in HIS hands and let it go. I am going to enjoy every day that I have with my family and not let things get in the way.

God has said, "Never will I leave you; never will I forsake you." So we say with confidence, "The Lord is my helper; I will not be afraid. What can man do to me?"
Hebrews 13:5-6

Scary words

2010-09-29T20:36:00.001-06:00

So, it has been another long day. Ben was a sick monster most of the day. He seemed to get a bit better as the day went on. Unfortunately, that did not last long. My poor baby is just so sick and we cannot get a grasp on this whole thing.

I took him back to the doctor today. Dr. Lee saw us and was not happy with us. She is feeling the same way I am these days. What the hell is going on? She is just as frustrated and has gone over all the usual suspects for this problem. So, we are pulling out the heavy guns. In we bring: ENT, Cardio and Pulmonary. I am not happy about any of them, but if we have to do it, we have to do it.

It scares the hell out of me to use the word Cardiologist in the same sentence with my son's name. I really want to have a perfectly healthy baby. He has been so good this far. I know that we will get it all figured out, but it is scary as hell right now. SpO2 levels are in the low 90s but his heart rate is in the 140s.

Where does this put me? I am in a lot of pain these days, but my child comes first. I was feeling sorry for myself several months ago. Now, I am worried to death about my child. I am in pain, but I cannot imagine what it must be like for him. Pain is okay, but when you cannot breath or your heart rate is through the roof, preventing you from doing things....that must cause serious pain.

I have been here on earth for 35 yrs, but my baby has only been here for 3 yrs. Poor kid. He has so much to look forward to...why does he have to be so sick.

The words cardiologist, ENT and pulmonologist are pretty scary when they are used in conjunction with your child's name. It is also scary for me to think it could all be my fault. Well, not exactly my fault, but could EDS be the responsible for my babies illness?

Lord, please watch over him and make him healthy. I know it is selfish for me to want him here when his rightful place is with you. I cannot change that fact....I really want him to be happy and healthy. Please take him into your arms and do what you feel is necessary for the good of my child.

Ready to Crumble

2010-09-29T11:42:00.000-06:00

I don't know how mommies do it. Ben has been sick on and off now for more than 3 weeks. As I posted earlier this week, we took an ambulance ride on Friday and were sent home with an oral steroid. We did have an x-ray and we were told that there was no pneumonia.

Matt and I decided to purchase an oxygen monitor at that point. We had it overnighted and it got here on Monday. Monday morning Ben has school for 2 hours. His fever was gone and his color was good, so I wanted him to go to school. After dropping Max off, Ben looked at me and said, "I just want to go home." I took him to school anyway and he did just fine. He was not his normal jumping around self, but he did okay. Yesterday he was home with me all day. When we went to get Max, he was back to acting a little funny. He did not run with the kids, but rather sat on the ground at my feet.

Swim lessons were last night and they both wanted to go (Matt went to Denver for a meeting). So, I thought I would just take them. Ben seemed okay, but not great. I gave him some albeuterol and out the door we went. As I left, I decided to grab the O2 monitor. I put it on him and his level was 88. Normal is 92 or above. So, I called the clinic and was told to bring them right in. Mind you, the after hours clinic is almost 1 hour away. We got up there and he was holding at 92. Which was good and bad. The nurse practitioner basically told me that because he was looking at the toys and his stats were good that we should just go home and take an antibiotic. I told them that we were on the edge going down, not up. So much for listening to a parent.

As soon as we got home, I started him on a nebulizer treatment. His heart rate ran up to 180 and off to the ER we went. Mind you, that between the time we were at the clinic and the time we got home...you could visibly see the difference. We got to the ER and things looked to be stable. They did an x-ray and told us that he had viral pneumonia. They sent us home with decent stats. I feel like no one listens to me.

I am a mom, I know what I am talking about when it comes to my kids. Ben is pale and unhappy today. He does not want to eat (hello, it is Ben) and he is not wanting to drink a whole lot. I am pushing juice, but it is not working. We have had less than a cup in the last 12 hours. We are off to see the doc again this afternoon.

I am beyond frustrated. Poor little guy is tired and so am I. He is lying no the couch... dozing on and off. I did see the first semi smile in the last 24 hours. Hopefully that is a good sign. I just wish someone could have done something before we got to this point. I am currently terrified about the pneumonia setting off the asthma and us going through it all again. Right now it seems like we are on and endless cycle.

Wish us luck today....hopefully we can get out in front of this and it will all work out soon. I hate seeing my baby like this.

Done

2010-09-28T10:34:00.000-06:00

I have deleted a post from yesterday.....it obviously upset someone. Not that I really care what this person thinks, but it is just easier to let it go.

It is sad to loose a friend in such a way. I am, however, finished with it all.

good morning world

2010-09-27T10:21:00.000-06:00

Good Morning World,

Long weekend....Friday night started it off with a bang. Okay, not a bang, but flashing lights. About 9:30, Ben woke up crying and coughing. It was so scary. He started vomiting shortly after I got him up. When he started struggling to breath, I decided it was time to dial 911. My poor baby. I have never been so scared in my life. The little man started to turn a little blue. Matt and I gave him all the medicine we had. When the paramedics got here, they gave him some more steroids. We took a short ride to the hospital where we got x-rays and such. He got some more oral steroids and we were able to come home. His little cough got a bit better while we kept him quiet on Saturday. I did take him to a birthday party on Sunday. Bad idea. While I did keep him tame, he still did too much. He slept in this morning. I did get him up in time to go to preschool, but he was so tired. I felt bad for him, but did make him go. I hope that all goes well. We shall see.

Last night was bad too. At 3:30 this morning, I was awakened by the door bell ringing 3 times. It was so bad. Scared the crap out of me. I got Matt up and he got the gun. We did not answer the door. We had no idea who it was.....we did peek out and notice that we did not know the car or the person. I then called 911 and they sent some patrol cars through the neighborhood, but we have no idea what ever came of it. Needless to say, neither one of us really slept well after that. I made Matt sleep on the couch.....so he was close to the door and the boys. A bit freaked out......and very tired.

So, I am enjoying my few minutes alone. Matt is downstairs working and the boys are both at school. I have taken the time to sit and enjoy a cup of coffee and play on the computer a bit. Now, it is time to follow my flylady rules for the day. Off to shine the sink and change the laundry.

Let's hope that this week goes better.

To Curl or not to Curl

2010-09-11T12:09:00.000-06:00

Okay, so I am going today to get my hair permed. What an awful word, permed. It sounds totally 80's.

I have talked to the woman who is going to do my hair and she sound professional. I am looking for big curl...not the tiny ones we got in the 80's. I actually looking forward to this, but totally frightened at the same time. My hair is just past my shoulders and so hard to take care of. With my EDS, it is very hard for me to dry my hair. I have learned to do it in sections, but it still takes me forever because I have to stop and let my arms rest. I am looking for this to be so much easier. I really hope that I can wash it and just let it dry. Hopefully the curls will be beautiful without me having to do much.

I really like the idea of a wash and go style. I have tried so many before. My hair has a funky wave to it. It is not straight and it is not curly, so I have to do one or the other things to it every day. I have taken to washing it every three days and then dry it. It looks really good the first day....I usually wear it down then. After that, it is two days of pony tails. It is just easier that way.

So, here is hoping that it turns out the right way. I will make sure to post a picture tomorrow after I have gotten it done.

Here is what it looks like now.......

Mom of the week (not)

2010-09-10T21:09:00.000-06:00

So, this was a totally weird week. I must have been thrown off by the long weekend and not taking Max to school on Tuesday.

I am completely mortified that I actually forgot that Wednesday was early release for school. He was suppose to be out at 1:30....and I forgot. I took a nap. I set my alarm to wake me up in time to get Max at 3, like I normally do. At 1:45 my phone rang. I sleepily answered it and then woke straight up. It was Max's teacher letting me know that I had forgotten to pick up my son. I was told that Max sat down out front and cried because I was not there. OMG! I felt my heart just drop out of my chest. Thank God my friend Kim was there and brought him home.

I swore I would never do that. My family had forgotten me before at school. It was one of the worst feelings ever. I did not want to be that mom. I guess it happens sometimes. I suppose I should not be so hard on my family, but still, it was a horrible feeling.

I still feel awful.....I probably will for a long time. Matt says it is just some thing to learn from. I am sure that it was a mistake on my part. It was on my calendar, but I was so busy getting the rest of life together that I forgot to look. My calendar is now color coded and I look at it each day. I pray that I never do that again.

I love my kids and I want them to know that I love them and always will. I really hope they know that I will always be here for them.

Life

2010-08-30T21:53:00.000-06:00

Life has gotten out of hand today. I have been doing so good. The last several weeks since Max started school have been pretty good. I have been getting up each morning, feeding my kids, getting myself dressed, putting on make-up and getting everyone out of the house early everyday. Early to the point that I have had to wait to even let Max go onto the playground.

Today I was not feeling well this morning. So, while I still managed to do all of the things above, except get out of the house too early. I planned it so that I could get there just in time for first bell and the kids could play. Unfortunately, life did not go as planned today.

I pulled up to the side of the street on the other side of the elementary school, as I always do. I got out, opened Max's door enough for him to get out and went around to the other side and get Ben. Max was on the road side of the car. Just as I went to get Ben and was undoing his seatbelt, I looked up and saw the car coming. I yelled Max and he turned to look at me....still in the car. THANK GOD! Just as I got his attention this "domestic Danica Patrick" (thanks Jon for the reference) drove by and clipped my car door. It was very unnerving to see pieces of my car flying from the door where my son was suppose to be getting out. Max is fine, a little worry about the car.

Standing there a bit stunned, I realized that everyone was fine and it was just the car. The women who hit me, almost did not stop. I got both of the kids out of the car and put them on the sidewalk. The woman did stop and the first thing I did was write down her license plate. I was trying to think through what was going on....I decided that since I had her plates, I would make sure Max got to school and then deal with the rest. The teacher at the cross walk told me she would keep an eye on the other lady. I thought that was odd, but was thankful. I took Max to the front door of his school where his teacher was on duty. He was upset about the car...it was so sad to see. Ms. Marsh is awesome!!! She took him and got him calmed down so I could deal with the accident. (Ben stayed calm through the whole thing.)

I got back to the car, swapped insurance information and called the police. It took forever for the state trooper to show up. I was able to call USAA, file the claim, and set up the body work before the cop showed up. I really should not complain about him being late, he was super nice. I have disabled vet plates on my car and I think that made things a bit easier on me. I found out in the course of things that he was retired army. Anyway, I had forgotten to print out the new insurance card (I have never had a reason to use it), but he did not write me a ticket for that.....Yeah. I did over hear him writing the other woman a court summons for the same thing. He did have to write me a ticket for opening my door into traffic. Yep, you read it right. This woman, who is not paying attention, hits my car, could have easily hit my kids and I got the ticket. There was no loading zone there, so it was my fault.

When the cop started to write me that ticket, the woman decided that she did have damage to her (after insisting there was none). She told the cop that there was something wrong with the gas tank. She stated that when she went to look at her car that after she opened the gas door, the cap was loose and there was gas coming out. The cop nearly laughed at her. He told her that there was no way that could have happened from the damage done to my car. But, he did tell her that her ex-boyfriend could have done something to her car.

We all know way too much about this woman. She was parked, half in the road, when I pulled up. She admitted she was not looking at the road, but was looking in her rear view mirror to make sure her kids were crossing the street safely (can you say irony?). She decided that she needed to share with me that she is 24, just moved back in with her parents, has two kids (8 and 5) and she was not sure the insurance was good. I was totally amazed by this woman....standing there in front of me, admitting she was not watching where she was going in a school zone, sharing all of her issues with me. As I stared at the "thing" in sweats, no shoes, and a bathrobe, I just wanted to tear her hair out. She could have easily killed my kid if I had not been paying attention and she is telling me all this crap about her sorry life.

Okay, maybe I am a little mad about it. At least I have got all the logistics figured out to get the car fixed. I went by the body shop today and found out it will be almost $2000 to fix my car. They are not going to get the part until later this week, so I am going to take it in next Tuesday. The insurance company is going to pay for a rental while my car is getting fixed.

All in all, it has been a long day and I am thanking God that I still have my son and he is healthy and happy.

All of this and I am sick and Matt is out of town. I am pretty happy with myself for how well I handled all of this. Keeping it together has not been my forte lately, but I did it.

First Day

2010-08-19T21:35:00.000-06:00

Today was Max's first day of kindergarten. He was so excited when I woke him up this morning. (Normally he is up at 6, but I woke him up at 6:30.) He ate his pancakes as quick as he could and hassled me about getting him dressed (I have to help because of his arm). Everyone was ready to go out the door at 7 this morning. Which is funny, because we do not have to leave until 7:30 or so.

We played out front a little and took bunches of pictures. It was so much fun. I got some great pictures...great pictures and funny pictures. But, Max was ready to go. He just wanted to leave, RIGHT NOW. So, we left.

We got there early. About 10 minutes before we are actually suppose to be there. We got out of the car at 8:05. That is the time that the teachers are out at the playground. We went around back of the school and it was total chaos. Both of the boys were off as soon as we told them they could go. It was hard to keep track of them. Ben blended in with all the other kids, even though he is so much smaller. There is one big play thing in the center of the playground with ladders and slides and much more. I think 80% of the kids were on that one piece.

Finally, we saw Katie and her parents come around the corner and Max was off. He wanted to go and see his girlfriend. We stood around with Katie and her family until the bell rang. We got some great pics of the two of them together. Then the bell rang. We found Max's teacher and the line he was suppose to be in. He was near the end of the line. I gave him his snacks, hugged him and told him he was amazing and he would do great. Matt gave him a hug and told him to have fun. At that point, Max looked at me, so I gave him another hug and he just began balling his eyes out. He was so upset. I had told myself that I was not going to cry, but that just broke my heart. I did not cry in front of him and tried not to let Ben see either. Ben was upset too. He wanted Max to come home.

Ben, Matt and I went around front and had the BooHoo Ya-Hoo breakfast with other parents from the kindergarten class. It was fun and most of us managed to not cry too much. I met some of the other moms from Max's class. Ben stopped being upset when the Bulldog mascot came around and hugged him.

Matt went to work and Ben and I played the rest of the day. We had fun....Ben learned about a glue stick and had a blast gluing everything he could. I have some great collages.

We pick Max up at 3:00. He was so happy and said he had a great time. He actually told me that kindergarten is way more fun than preschool. He was so hyped about it. I tried to get him to tell me what happened, but he said he could not remember. Poor guy did not even remember all that he ate for lunch. As far as I know, all he ate was a salad and a yogurt. I sure hope it was more than that. He finally told me a bit about his day as I prodded him for information. He had music school and sang songs there. He got to color and did something with letters on the letter rugs. Not sure what all of that means, but he loved it. He also told me that he met a girl named Olivia. We will see how that goes. Katie might get jealous, but she is not in his class and Olivia is.

Unfortunately for me, he was in tears again by bed time. He wanted me to go to school and stay with him for the day. I told him that he is a big boy and he can do this by himself. Let's hope tomorrow is better than this morning. It is a great new chapter in all of our lives, but I am still not sure how I feel about it.

Next Monday, I have to drop Max off and then go to the preschool to drop Ben off. We will have to wait and see if I can handle that one.

Annoying

2010-08-14T17:57:00.000-06:00

So, yesterday and today, I have been down with a sore back. It is awful. I have had to try to sit still and not do much. Has not really happened.....I have done some laundry and such. That was until Matt got onto me about it.

Now I am sitting here. From my favorite chair, I watch the world go by. Matt and the boys cleaned up the living room today. Now they are out in the garage today. I think they have already changed the oil in my car. I know that Matt is putting shelves up now. I can tell because of the noise. I feel like I should be out there helping. If I am not out there to help, then I cannot complain if they are not exactly what I want. I have to just be thankful that my husband has put them up for me.

I am resting so I can go with the family to the Rockies game tomorrow. There is no way I want to miss this. It is going to be so much fun. The kids are out of their minds excited. Each of them have a hat and a huge purple finger. They are ready to go now! We are all looking forward to it. It is going to be a great family time. And, a fabulous end of the summer present.

Next week is Matt's last week at the AOG, Max's first day of school and Ben's meet the teacher. It is the end of summer and it is happy and sad all at the same time. Matt is starting his new job on the 23rd. It is a big step for the whole family. I know I have said it before and I will say it again. WE are excited and life is going to be better for us all. It is going to be a huge difference for all of us. Matt is going to be working from home. While we are all excited about this....we are not sure how it is going to all work out. He will have his own office in the back bedroom. We are going to put the day bed in there, just in case we need to have an extra bed for guests. He currently has two desks in there....both junkers, but I am hoping to come up with something better for him. He has asked for a bookshelf, but that is it.

I am sad that my baby Max is starting to full day kindergarten. That means that he is no longer my baby. He is going to be a big boy next week. I am not sure what my days will be like without him at my feet all the time. It is going to be hard. It has been 5 years of him right there. I know that he has been to preschool, but the most he was gone was 3 hours 3 days a week. Now it is going to be almost 8 hours 5 days a week. If that was not bad enough, Ben starts preschool the following week. He will only go 2 hours a day 2 days a week, but still. My babies are all growing up. I am not sure if my life will get simpler since they are not going to be under foot, or busier because I will want to do somethings with the classes? What kind of a soccer mom am I going to be? Before I was just a stay at home mom, but now it seems to be a transition for me.

I am going to have to reinvent myself again. From a home mommy to a school mommy. Is there a difference? I am hoping so....I feel like I have failed at the home mommy part. Let's see how the changes go.

New Beginnings Part 2

2010-08-10T22:44:00.000-06:00

So, Matt found out yesterday and signed a contract for a new job position. I wanted to yell it from the mountain top yesterday, but he did not want me to tell anyone. I think that maybe it had just not settled in with him yet. Today he sent an email to all of the people at work and slowly started to tell friends and family.

Me, I am so stinking excited that I can hardly stand myself. It is not totally what we were expecting, but it is still great for us. Matt will be working from home for the most part, but will have to travel a bit. He will be leaving for 2 weeks starting on the 30th of Aug. I am glad that it got pushed out to that date. He will be here for both of the boys first days of school. He will also be here for Ben's and my birthdays. It is awesome.

It is going to be a big adjustment for us. I was looking forward to the boys both going to school this fall. Max will go full time and Ben will be going 2 days a week for 2 hours a day. I was looking forward to the couple hours a week of peace and quiet. I am wondering if I will still get the down time with Matt home. I know he is suppose to be working, but it would be quiet time for the two of us too. Not sure how that will all work out.

It seems to be a beginning for all the boys in my family. I am not sure exactly what I am feeling. Left out might explain it. I am not going to be doing anything new for me. My scrapbooking group has fallen apart. So, I do not even have any place to go on Saturday nights. It has been almost 5 weeks since I have gone out of the house by myself. I have gotten quiet time in the house while Matt takes care of the boys, but for some reason it is just not the same.

Got to figure out what is going on in my head with all these new things happening here. Please, don't misunderstand what I am saying. I am so thrilled that all my boys are doing well (my husband is one of my boys). I am just not sure where I fit in. I fell like all I do is work for them, but that should be enough for me. I love being home with the kids and would not trade it. Maybe I will feel more useful after both of the kids go back to school and I can do things for the classrooms.

HAPPY DAY in our family.

new beginnings

2010-08-09T20:22:00.002-06:00

never mind.

New things

2010-08-05T10:10:00.000-06:00

Today is going to be all about trying some new things. Okay, not some, but two.

I have found a new recipe for Chicken with Black Beans for the Crop pot. I am really excited about it. It starts with frozen chicken breasts. I love that idea. I can never remember to thaw chicken breasts the night before.

4 frozen chicken breasts
1 can black beans (drained)
1 can corn (drained)
1 jar salsa
1 pkg cream cheese.

Put all but the cream cheese in a crock pot on high for 4 hours. Then put cream cheese in for last 1/2 hour.

I read all the reviews and they were all good. Some people said they had to add some flavor with red pepper flakes. They also said that the cream cheese cuts the spice some, but not the flavor. We shall see. I am pretty excited to test it out on the family tonight. A real dinner with actual real effort from me. Let's see how that goes. LOL.

I am also going to work on toilet paper roll albums. Sounds weird, but I am excited about it. Cheap way to make something for others. I think these might be fun little Christmas gifts. They seem to be really easy. I hope they turn out as good as I think they might. If they turn out good, I will post pictures tomorrow.

My house is getting cleaned up and organized a little at a time. I am really enjoying getting life in order. Living room, part of the kitchen and one bathroom finished. Scrap room is started, hopefully I will finish it today before starting on my project. Oh, my bedroom is finished too. That makes me exceedingly happy. It is nice to lie down and be in the calm of my room. As soon as my new body pillow comes, I cannot wait to sleep in there too. It will be so nice to sleep in the same bed as my hubby, again.

Life is good....maybe I should look for some of those shirts so I can remember that every day.

priorities

2010-08-03T15:24:00.000-06:00

What are my priorities in life? Last week I was in a tremendous amount of pain. I had spent two days in bed and then Max fell and broke his arm. It is amazing what a bit of adrenalin can do for you. I was not upright when we left for the hospital with him, but I was up and around.

It was amazing that for the several days after that I was not worried about my pain. While it was there in the background. I was not focused on it at all. Max ended up needing surgery....that put the pain off a little longer. Then we went out to Holyoke for the fair and I was so worried about Max getting hurt again that I just kept going.

By Sunday I was just so worn out that I actually spent the whole day in bed, literally the whole day. It was great....I slept the whole time. Not just lying there, but truly sleeping. It was great. I felt much better pain wise and emotionally after that.

Yesterday was another day of doctor appointments in Denver, but I just went through the motions.

This morning I woke up with a new focus. Thinking about all that has happened in the last week, I realize that my pain needs to take the back seat to my children. They are what is most important in my life. I am here to take care of them and prepare them for the future. Who knows what they will be in the future.

Just thoughts

2010-07-26T18:25:00.000-06:00

Before I get started writing this blog, please note that I would never actually do anything to harm myself. For those of my friends and family, this might be very hard to read, but I feel the need to share.

I am living with my EDS, but not handling it well. I have done plenty with my husband and boys this summer and never intend to stop, as long as I can. But, it never fails that I feel like I should be doing more.

I am feeling horrid about the situation that I have put my husband and kids in with my condition. For example, the other night I took a sleeping pill. I took it late because I have been trying not to take them, but that night I was having considerable pain. The next morning, I was having a hard time waking up. Since I sleep on the couch, Max always comes and sees me before Matt. Because I was having a hard time waking up, Max walked into Matt and said, "Mommy is not waking up because she took too many pills." OMG, I felt horrible. Can you just imagine it? Next Max is going to say something to someone at school and I am going to be accused of being a drug addict. AAHHHH, how very scary.

As far as Matt.....he pays for my disability every day. The day starts with me hurting every morning. Matt had to make the kids breakfast before he left for work today. Double duty for him. On days that I am managing in the morning, I do get things done during the day. I have to take care of the kids and do things for them. So, the house becomes and issue. I do manage to get one big thing done each day. Big things are laundry, dishes, cleaning bathrooms. I will never be able to clean the whole house in one day any more. It sucks. I am suppose to be taking care of my family. I am home everyday. I do not work outside the home. It is my job to do all these things. Unfortunately, my body just will not let me do those things all in one day.

There are some of you who really do not want to keep reading this paragraph (parents and siblings). I have said before that I have been sleeping on the couch for several (6) months. It makes things a little difficult in the "love" department if you know what I mean. It is now to the point that we actually have to schedule days so I can take my pain meds early enough that I am mostly pain free. It sucks big time. It is hard to feel love and loved when we cannot really "be" together.

So, I have all these things were I think I am failing. It does not help when I am in so much pain everyday. It has been really hard to be positive about anything. I have wondered what my families life would be like without me. I know it would be hard to begin with, but would they be happier in the end.

I do have these feelings some times and wonder, but I would never act upon them. I just could not imagine harming myself. (I just don't like pain, LOL). I know I have to be here for my kids, if not physically, then emotionally. And, Matt is the love of my life, I would never want to be anywhere without him (I think he feels the same).

I just had to put this in writing....maybe to see how stupid it is to feel this way.

Sure

2010-07-18T20:48:00.000-06:00

I am not sure that I have anything to say really. I feel like I should be writing. I have not been here for so long. I am sure there has been so much that has happened since I last wrote.

It is mid-July and things are going quietly. Well, not really. The kids have been busy swimming and hurting themselves. The swim lessons are going swimmingly (ha ha ha). The boys are both doing great, really. Max is nearly swimming on his own. Well, he can swim by himself as long as he can hold his breath. It is hard to get him out of the water at times. There is a spray park at the pool where we do swim lessons. Max never wants to go in the spray park, but wants to stay in the pool and keep swimming. Max sliced his knee open one day while we were there. I actually had to use a steri-strip to hold it together. Might have used a stitch, but it was the knee and I am sure he would have ripped them open. So, I bandaged him up and off he went, being Max swimming and playing.

Ben is having a blast at swim lessons. He is so small, it is scary for me sometimes. In the week before he started swim lessons, we made an emergency trip to the dentist. He ripped the connective tissue between his upper lip and gums. Turns out that was not a big deal, but he did crack the tooth just above the gums. The doc was afraid that we might have to take out the tooth. Good thing is that it did not die so it is still there. He started swim lessons the next week and started loving it. Unfortunately for him, several days into swim lessons, he fell off the couch. When he did that, he dislocated his shoulder. I managed to pop it back in myself. Of course, I did not do it on purpose. I did take him to the doc and he agreed that I had popped it back in. Given my history of EDS, the doc did not bat an eye at what happened. Ben got a little sling (I did not know they made them that small). He sat out for one day of swim lessons, but was glad to get back. I am being careful with him for now. There are a few things at swim lessons that I am not letting him do. I want to make sure that my baby heals a bit before he goes back to the day to day.

On the way home from the doc with Ben that day and the car broke down. It was horrible. Matt and I freaked out and were afraid that we were going to need to buy a new car. Turns out it was only $530 repair.

Drugs are kicking in....better go.

today

2010-07-01T07:49:00.000-06:00

Good Morning world. We are all up, the sun is shining, and the skies are beautifully blue. We are going to have a great day, I just know it. Today is treat day for Max at swim lessons. We get to find out if he will be moving up a level. I am not sure if he will be doing it or not.

Great news is that Ben is going to be able to start real swim lessons next session. We have been swimming in the baby pool while Max has been in his lessons. Ben is jumping off the edge by himself. I have taught him to float on his back with his ears in the water (with me having a hand on his back). He can put his face in the water and blow bubbles. He is almost ready to go totally under the water. If I dunk him he will not fuss, but he is a little afraid to do it himself. Anyway, the pool director saw us in the water and decided that it was time to put him in lessons. I was surprised because when I asked the assistant director last week, she told me he had to be three before they would even consider it. Not only is he going into real swim lessons, he will be in basic level two to start. How awesome!!! He is excited. He has been wanting to jump off the diving board, even though Max still won't jump on his own. He will start on the 12th. I am a little nervous, but that is just the mommy in me.

I am still feeling pretty good. I have started taking a B-12 tablet each day and I think it is helping a little. I am still napping. But, I can wake up in the morning and after nap without feeling groggy. That is a big bonus. I do not feel like I have to sleep all the time right now. It is fabulous. I am getting more done around the house, which also makes me feel better. I have actually made real dinners for the last 4 days. Don't get me wrong, I feed my family every day, but I have been cooking. No fast food, no meals out of a box. It has felt great. We are all sitting down at the dinning room table and eating together. It is fun to hear the boys tell Matt all about their days.

The evening yesterday was great. After dinner, we took the boys to Wendy's. They each got their frostys for reading for the library summer reading program. I am so proud of them for reading. Max is reading on his own and Ben wants me to read to him all the time. After that we all went to the Nature Center and took a walk. It was so much fun. I love spending family time. It was so nice. I think Matt is wanting to do more (just in case he gets this job and leaves for 5 weeks). I, also, think that he may want to do more, even if he does not get this job and leave.

I am getting ready for the kids to both go to school this year. It is only July, but I already have school supply lists. I am still not sure when school starts. It is exciting, but sad at the same time. Max will be starting kindergarten and that means he is growing up. My first baby is growing up. Ben starts preschool this year too. He will go to school 9 to 11 on Mondays and Wednesdays. What am I going to do with myself? I am so used to having at least one of them with me all the time. Max did not start preschool until after Ben was born. I have spent nearly every day with Ben his whole life. It will be strange not to have him around. I am sure that, eventually, I will be happy to have the time and find something to do. It will also be much needed time to myself, if Matt gets this job.

Wow, I had a number of thoughts today. I guess the better I feel the more I have to say (maybe because I am doing more).

Freaked out

2010-06-29T20:50:00.000-06:00

I am letting the cat out of the bag a little early, but I am so nervous I am not sure how to feel. Matt has interviewed for a new job. It sounds really positive. The guy who interviewed him called and asked what his availability looks like for July 19th. Matt said pretty good. Then found out that he would be going to CT for 5 weeks.

I know that there are lots of single moms out there and lots of Army wives who do this all the time. I am just scared that something might happen to me. I have gotten with some close friends to talk to them about support while Matt is gone. Everyone is being great. I am feeling better than usual --minus the shoulder. I am hoping that I stay that way. School will start while Matt is gone. I feel a bit sad about that. Max is starting Kindergarten and Ben is starting preschool. It is all exciting for the family.

The job is a good one. It will certainly put our family in a much better place financially. We would be able to move to Holyoke, CO sooner than we thought. It will make our lives so much better. Matt will be missing somethings with the kids, but he will be working from home when he is here. So, that would give opportunities to see more of the kids things than if he worked 9 -5. So, while he misses some, he sees more than he would otherwise. I am not sure how he feels about that.

I am excited for him....it is one of those dream jobs for him. It is something he really likes and is good at doing. He will get great experience and if he wanted to move companies later, he would have a great resume'.

I have been super positive the last couple weeks (even with all the minor injuries). I am hoping that those feelings will continue. Matt and I have already made a list of things we would like to have done before he leaves so my life will be a bit easier. I am going to be busy with the boys. We have next week off of swim lesson and then it is back to 5 days a week for Max and Ben will start Saturday mornings. Then another week off swim and then they both will be doing Tues/Thurs evenings. School will be starting in there somewhere too. It will be busy and I think if we just stay that way things will be good. My life is about my kids and family. That is a choice I made and I love it.

I know that I will need some me time still and I will get a few hours each week. Ben will be in preschool for two hours on Mon/Wed in the AM. I have decided that I will go to Starbucks and just chill during that time. I have also talked to some friends about watching the boys for a couple of hours a week, just to let me get a grip on life. Who knows, I may not need that time. I may love the new life that we will have. I know that having to get up every morning and get Max to swim lessons has really helped me get out of my funk. I can only imagine what it will be like when they are both going to school.

I am scared, but I know that others do it. I will just need all the positive thoughts I can get to make sure I stay healthy while he is gone. I may just have to come to the realization that it truly is going to be mind over body.

I CAN DO THIS!!!!!

Tough week

2010-06-25T19:20:00.000-06:00

I have decided over the last month or so that I am going to go for it and enjoy life. This week was not one of them. Started out great....Max started swim lessons and loved them. I even got Ben into the kiddie pool while Max was in his lesson. And, after swim lessons, the kids get to play at the spray park for no additional charge. We had so much fun at the beginning of the week.

Wednesday came around and after swim lessons, we went to Walmart. I made the huge mistake of picking up Max and putting him in the shopping cart. He is just a little too heavy for me to keep doing that. I pulled out my shoulder, wrist and two fingers. Even though I was in pain, I still go my shopping finished. Just figured if this is the way it is going to be then maybe I will just have to work through pain and accidents. I iced it, took meds and felt better in the AM....while it seems that my shoulder hurts every evening, at least I can do some things in the AM.

Thursday morning, we were all getting ready for swim lessons. I was in my room with the door closed, getting dressed, when I heard Ben fussing at the door. I did not think much about it because he does that when I am in there and he wants me. Finally, Max opened the door and said, "Blood, Mommy." I came running out and Ben was bleeding from the mouth. I finally got it stopped enough to realize that he had ripped the piece of skin between his upper lip and gums. I know that facial and mouth wounds bleed a lot, but after looking at it, I saw how bad the cut was. I decided then that we should to the Dentist for an emergency visit. Turns out that the cut was not a big deal and really nothing to worry about. BUT, the Dentist wanted x-rays. After the x-rays, Ben was very good by the way, he was able to pull them up on his computer. He showed me where Ben had fractured his right front tooth. The fracture is above the gum line. Nothing we can do about it right now. We need to keep an eye on it. If it abscesses, then we have to go back in and they will have to take the tooth out. There is a chance that it could just die too. Needless to say, we did not make it to swim lessons that day.

Friday we did make it to swim lessons. Both of the kids were so happy. Max did well, but did not jump off the diving bored by himself. He is getting closer and closer to doing it. Then everyone went outside to the small pools. Max's does his lesson in the 3 1/2 foot pool. He does really well. Ben and I play in the 1 1/2 foot baby pool. Ben loves it. I have even gotten him to put his head under the water. I was so excited. After Max got done with his lessons in the big pool, he came and joined us in the little pool. Somewhere along the way he sliced his knee open. The life guard did not have a first aid kit (really?). Finally someone found one after I had been there putting pressure on it for 4 minutes. I did get the bleeding stopped and it did not look as bad as it had in the beginning. So, the life guard cleaned it with alcohol and put two band-aids on it. Max was crying that he still wanted to play in the spray park.....so I told Max we could play until his band-aid fell off. It did not last long. When we got in the car, I was still not sure we should not go get stitches. I decided to patch it up myself. I went and bought some adhesive strips and neosporin spray. I got it all cleaned and bandaged. He was tentative about it this AM, but after naps, he totally forgot about it.

I have just put them to bed and looking forward to some quiet time with Matt tonight. I will most likely take some pain meds and drug out for the night. Matt will be gone for the next two days, so I most likely not take any pain meds. While they really help to control my pain and I seem to be pretty coherent on them, I am so afraid to take them when it is just me and the boys. What if something were to happen and I could not drive because of pain meds? What if I was so out of it that I could not respond properly? It scares me to be at home on pain meds with the kids by myself. So, no pain meds for me this weekend.

To end, the week started out great, but ended up not so much. We are all still here and healthy as we can be. Max is still loving swim lessons, but wants to do them too. (He will starts Auqa tots in July). Matt has worked hard and is off to a conference for the weekend. Me, I am still in pain and learning to deal with it. I am trying not to let it slow me down too much. I am a bit less energetic and mobile by the evenings, but I love my days.

boys

2010-06-24T07:40:00.000-06:00

Okay, so it has been awhile since I have been here. I have been busy with the boys and trying to live a normal life.

My boys are blossoming. Max has started reading...blows me away....reading before kindergarten. Ben starts pre-school in August and he cannot wait to go to school. Max is taking swim lessons everyday. He loves them and is doing so well. I am so proud of him. Ben and I get to wade in the kiddie pool while Max is swimming. Ben seems to like it until he falls over and goes in face first. He is working on it though.

Me, I am in constant pain. Yesterday I made the mistake of picking Max up (he jumps so it is not so hard for me). I pulled out my shoulder, wrist and two fingers. Still had to finish shopping. Manage to do so many things despite the pain. I am going on the 7th of July for an MRI. Then it will be back to VA ortho to see what they want to do.

I am afraid to have surgery on my shoulder......There are things that can be complicated about surgery on someone with EDS.

I am feeling very emotional about this all.

Forgetting other pain

2010-06-09T08:26:00.000-06:00

I don't know who else watches House on Fox. If you do, remember when House was trying to get off of pills. He took them for the pain in his leg...so to forget about the pain in his leg, he stabbed his hand.

I feel that way these days....no, I don't mean I want to stab myself in the hand. I mean that the pain in my shoulder has made me forget about most of my other pains. The mornings are pretty pain free, but by sleep time, I just want to cry from the pain. I am sure that it is because I use it so much during the day. I am careful not to pick heavy things up, but you don't realize how much you use your shoulder until it hurts.

I am not getting down about. It is just a part of my life. I have accepted that pain is something that I am going to have to live with. I am not freaking out about it or letting it stop my life.

Despite the afternoon and evening shoulder pain, I have cooked good healthy dinners for the last three nights. No fast food, no junk. Yummy healthy food. I am working on having the family eat healthier. Hoping two things come from this. First, I am hoping that it will help me and my joints. Second, I need to make sure that I maintain my weight. I really would like to loose 5 pounds that I have gained since I was diagnosed.

Well, I am off to play with my boys today. Cool and yucky outside, but we are going to have fun inside.

Lazy?

2010-06-07T09:21:00.000-06:00

I have been seeing a therapist for a long time now....just to keep things on an even keel. It is especially helpful now with this diagnosis. I have tried to avoid believing this is true and been beating myself up like you would not believe.

Everyday I feel like I am not enough and I do not do enough. My house is not clean, I have lots of projects to finish and I want to play with my kids more. When I do not get it all done, usually because of fatigue or pain, I feel like a total failure. I am suppose to do it all, healthy or not. I am a stay at home mom and that is my job. I feel like I don't give back enough. Am I down right lazy?

After seeing my therapist, I am not as hard on myself. I feel better about me. It is okay if everything does not get done everyday. I am going to choose to do better and not beat myself up when it is not done. I choose to not do somethings and I don't feel bad about them anymore. I am not lazy, I am deciding what I am going to do and not do. I am going to take care of my family, but not feel bad when something does not get done.

Doctor visit

2010-06-05T08:05:00.000-06:00

I went to the Denver VA on Thursday morning. I finally got to see an orthopedic doctor. It was just for my shoulder and not my EDS case. I explained to the doc about my condition and he had never heard of it, big surprise. He said that he would be looking into it and see if there was something more he could do.

He checked my good shoulder first. He asked if I was sure that it was not the bad shoulder. He could not believe the laxity in my joint. Then he went to the bad shoulder. He popped it out without even trying. It completely shocked him and hurt me. It was immediately popped back in. As the doc examined my shoulder further, he told me that he could actually feel the damage to the cartilage in my shoulder. He ordered an MRI.

The doctor suspects that I will be having surgery on my shoulder before the end of the summer. Ouch, not looking forward to it. Really, we will have to wait and see what the MRI shows.

At least someone is listening to me about the symptoms of EDS. Someday I am going to figure out how to make someone put it all together for me.

Trip to Chicago

2010-06-05T07:58:00.000-06:00

I am home from my trip and it went fairly well. We had a great time. Baseball game on Friday night....kids had fun....brother took a ball to the chin (6 stitches) pushing Max out of the way. Saturday we played in the pool all day. Sunday we all went to the Brookfield Zoo. We had a great time. That zoo is huge. We walked and rode the train. It was way fun. By the end of the day we were all exhausted and my shoulder hurt. I carried a backpack with water and such. It was dumb on my part. I put my shoulder out. I went to the ER on Monday while the boys went on the train with my folks. Tuesday we played in the pool again. We all were exhausted when we finally got home on Wednesday.

At Mom's

2010-05-28T08:20:00.000-06:00

In Chicago, visiting Mom. Yesterday was suppose to be a quiet day. We did stay home in the AM....the kids were getting restless around 11, so I took them on a short walk. Then Mom came home and we seemed to go non-stop. We went to Costco, then the mall, then to grocery, then to Walgreens. Then I came home and made dinner for everyone, but wait, we were not done. We went to the huge public library after dinner. Long day and my feet, knees and back were killing me. I did take a pain pill......and bought some new Danskos. I am so tickled about my new shoes. I was wearing my tennis shoes yesterday, thinking they would be good. NO, had so much pain. So, I bought the Danskos and the best part.................they were on sale for 75% off. Normally $120, I paid $30. How awesome is that? I should be able to handle most of the walking now. I wore them to the library yesterday and they are like walking on air.

YEAH! Baseball game and Japanese for dinner. Not so sure about the Japanese place, we are going to the one where they cook in front of you. Hope they kids do okay.

Fear of Flying

2010-05-25T15:17:00.000-06:00

Tomorrow I am flying to Chicago with my boys. I am a little nervous about it.....okay, extremely.

As much as I hate to ask for help, I have asked to have assistance to and from the gate. Both DIA and Midway airports are big airports. I am trying to convince myself that it is okay. I am nervous about having the two boys see me in a wheelchair. It makes me sad for them to see me. I cannot even put into words my feelings at this point. It is just making me upset.

I love my mother, but at this point I am not sure she understands my limitations. She has so many things she wants me to do. I tried to explain that I am not able to go at the pace that I used to go. I have to take things slowly. I cannot be running around town like I used to. I try to do one big thing a day, but when the big thing is going to the Brookfield zoo I think I will need a day off after that. She is used to me being able just to pick up and go do whatever we want. It is not that way any more. I am just going to have to explain it to her again and have her see it first hand.

I have not seen her in a 8 months and I have gone down hill really fast since then. This has been a total roller coaster for me and I am still learning my limitations. Let's just hope I can make her understand. I know that she is just being positive and I know that she loves me. I know that she really wants my boys to have a good time. My kids know my limitations....

okay

2010-05-21T16:08:00.000-06:00

I had my appointment with my therapist today. It was really good. I feel like I have taken a big turn in my life. I realize that I have been very hard on myself. I have been a black and white person....either all on or all off. I am trying to understand that it is okay to be in the middle. A little of this and a little of that. Meaning, I don't have to do it all. I can clean some, but it is okay to leave some for tomorrow. I need to enjoy today and play with me kids, but not over due it either. I have been trying to make sure my boys know that I love them and that I want to be with them. Nancy says that I am sheltering them a bit too much. I don't want anything to hurt them or their feelings. So, as moms, we all try to shelter our kids. I guess I am just doing it a little too much.

I have a disability that will eventually (hopefully a long time from now) keep me from doing a number of things. I want to do as much as I can now, but if I do that in the end, I will be seriously disabled quicker. So, I am trying to find a middle of the road place. I can do things, but in moderation. I can do this and I will figure out a middle ground for all of us. My kids are just going to have to realize that I am happy to play with them and I want to do things with him, but I cannot always be so physical. I can spend time with them and not always run around and be so active. What is wrong with sitting on the porch while they play in the yard? I am still there and still watching and still part of their lives. I can do that.....

It is a work in progress, but I don't have to be totally on or totally off.

Sidewalk Chalk and Sunshine

2010-05-20T17:58:00.000-06:00

I was a wonderful day. I did get most of the mess cleaned up, but not all of it. I decided that after nap time I would go outside with my boys.

We played with bubbles. It is so much fun to watch them run all over chasing the bubbles. We have a bubble machine. It blows a constant stream of bubbles (thanks Granna and Grandpa).

After that got old, we moved onto the sidewalk chalk. That was fun. We drew all kinds of things: houses, rainbows, fruit, and much more. Then it got interesting. I made the mistake of putting my hand in the chalk and then putting it on Max. That started it all. We all started just putting chalk on the ground so we could get it on our hands and mark the other person. The boys loved it. We all ended up a bit chalky. Hand prints, drawing and just plain scribbles. We had a blast. I am so glad that I got to participate in that moment with my children.

I have to say that having EDS has made me enjoy the little things even more. It was so much fun to play that way. Last year I would have been upset with the boys for making a mess and getting so dirty. Instead, I started it and loved every minute of it. The kids wash and so does the sidewalk. What a glorious day.

Clean House

2010-05-20T08:30:00.000-06:00

Today I have to clean the whole house. Not going to be fun. After putting the fire out with a fire extinguisher, there is a white layer of dust on everything. I went to get a spoon out of my crock and they are all covered with dust. I tried to put the kids at the table for breakfast and that was covered with white dust. The laundry that was in the basket waiting to get folded has to be washed again, it was covered with white dust.

I am not looking forward to my day of "hard labor." I am hoping that I can get through it all without a terrible amount of pain.

So, I am sitting here writing here, just to procrastinate. I am just trying not to do it. Really, I just cannot bring myself to get up off the couch and get going. The boys are playing and I am watching the Today Show. I know, get up Charlee. Get moving, you have an enormous amount of things to do today. Why am I just sitting here?

Okay, one more cup of coffee and I will have the energy. I hope.

FIRE

2010-05-19T18:25:00.000-06:00

Really, an honest to God fire in my oven. Had to use the fire extinguisher to put it out.

I have not been feeling great all day...got a number of things done and thought I would make the effort to make a nice dinner. I will not tell you what it was yet, because I think it will be super yummy once I put it in the right size pan.

I am not sure if it was my fault or my husbands. I have not cooked in a long time (several weeks). My husband has been doing all the cooking for me. So, I realized the my dish was leaking and dropping on the bottom of the oven. I put a cookie sheet under it to catch the droppings. The next thing I knew, the oven was smoking. I opened the oven to look and their were flames. I got the kids to go out of the house and panicked. I stood next to the oven and wondered where the fire extinguisher was. We have moved it several times as my husband was cooking things that could catch on fire. Lucky for me, we actually put it back where it belonged (does not happen here often). I used the whole can and got the fire out.

I went outside to check on the kids and they were fine. Max was rather upset and crying. He looked at me and said, "I have never been in a fire before." I looked at him and said, "Me either." Then we went on to have a conversation about how good they were in listening and getting out of the house and to the meeting point. He was still a little freaked out.

Matt came home and got them. The smell in the house from the powder in the fire extinguisher was horrible and I did not want them to be breathing it in, especially Ben with his asthma. I hope they are going to find something good for dinner.

I went back into the kitchen and realized that the white powder actually covered everything in the kitchen. This is the only time I do not like my open floor plan. The whole house is covered in this thin layer of white powder. It is going to take me days to get it all cleaned up. Darn.

I decided to look at the dinner. It was covered in the oven. I looked at it and it really looked fine and smelled wonderful. When I took the cover off, the cover was covered in the powder. But, inside the dish. It looked great. I carefully put the chicken a container and put it in the frig. I cannot decide if I want to eat it or not. It was covered and there was no powder or smell from the powder. So, I am not sure what I am going to do about it.

Now, I face the question of how to clean up the mess in the oven. Thinking about it, the oven caught fire because whatever is on the bottom of the oven caught fire, so I am pretty sure that I cannot use the self cleaner. Guess it will be easy off oven cleaner and elbow grease for me. I am really scared to use the oven again later. Will the stench be back if I use it? Will there be residual fire extinguisher powder? What a place to be in. I even went on line and cannot really find much about how to clean up after.

I just cannot seem to win. I really did wanted to do a nice thing for my family, but it seems I am damned if I do and damned if I don't.

GRUMP!

Laundry soap

2010-05-19T15:44:00.000-06:00

So, today I got off my butt and decided to get some things done around the house. I went to Walmart to do our grocery shopping. That went okay. I had to grab the cart guy to help me put the 24 pack of soda into my car. It was just too much for me to pick up. Between Max and me the soda made it to just inside the front door. It was kinda funny to watch us struggle.

I got the kids off for nap and took one myself. Feeling pretty good this afternoon, I thought I would get some laundry done. I folded all the things that were waiting for me and started the washer. I went to pull the laundry soap down from the shelf over the washer and BAM! pain in my shoulder. I do not think I put it out again, but it sure does hurt. Guess my laundry is going to have to wait (or not). Got to buck up and get it finished. I think I am going to have to figure out how to put the laundry soap into a smaller container. Maybe I will just buy a smaller one and have Matt keep pouring into that one.

I am going to attempt to cook dinner tonight too. I have to admit that I have been a lazy butt lately. Depressed or really tired, not sure. But, I am making a complete effort today. I am already ready for bed, but going to try to keep going. I may not do as much tomorrow, but we shall see.

Plans: Saturday I am going scrapping at 10 AM and then back to the house by 1PM to take Max to the zoo for a birthday party. Ben, Matt and I are going to just wander around while he is at the party. Sunday I will be packing for our trip. Monday is playdate at the zoo again (maybe the park). Wednesday we leave to go to Chicago to visit Nana and King Buzzy. I am also going to get to meet my sister-in-law (finally).

I am enjoying writing here, so maybe I will be writing more. Not just about my EDS, but my life in general. I guess that is about EDS. Most of my days have me thinking, feeling or dealing with my EDS. Even if it is a good day, I am thinking about EDS and being thankful I do not hurt.

Noteworthy

2010-05-18T08:47:00.000-06:00

Hello World,

I may have found a bed that I might be able to sleep on and be comfortable. We bought a second hand mattress from a friend of mine, last year. We put it into the guest room because it would not get used much there. I have been sleeping on it for 3 nights now and I am feeling pretty pain free in the AM. I actually slept on it for 11 hours last night and only had a slight twinge of pain this AM. I have a feeling to will be moving that mattress into our bedroom. It will be nice to sleep in the same bed with my husband again. That is really exciting in my house.

I had my physical for VA compensation last week. It was kind of a let down. I am not sure what they are going to give me. The doc was really hard to read. She sure did not seem to have much sympathy for me. She had me do most of my party tricks, showing her how flexible I am. It was not fun and life was a bit sore the next day. I really hope the VA is generous and helps out my family. I am not sure I could really work again. No real job, I don't think. I know that I cannot do anything that would take a lot of standing, a lot of walking, or a lot of constant sitting. What does that leave?

I have known for the last couple of years that things have been getting worse, but there was no explanation for it. Now that I have this diagnosis, I am really not happy about the down turn. What I know is that it is not going to get any better, just worse. I am surprised at how quickly things are going down. I was doing pretty good last year at this time. Just a lot of pain then and sore joints and muscles. It has gotten much worse over the last year. I have dislocated things and had much more pain. Grump.

I am trying to enjoy things while I still can. Yesterday was beautiful outside. I was so tired that we did not go out in the morning. I was struggling just to stay awake. I finally did lie down and nap when the boys did, but I was still exhausted. I finally decided that the kids had suffered from my being tired. So, I bucked up and took them outside. Even thought I was tired, we all had such a great time. I sat down most of the time, but did make an effort to play. We went to the middle of the yard and blew bubbles. The boys had such a good time chasing the bubbles. Max was very funny trying to catch the bubbles and getting so upset that he could not hold the bubbles. When I did get tired, I sat down on the patio and drew with the sidewalk chalk. We all seemed to have fun. Even though I was sitting in a chair on the patio, Max and I played catch and he actually caught the ball over and over again. It was an amazing feat for him....first time to catch without it being pure luck. I brought them in about 5 and they took a bath....they sure were dirty.

We all got some sunshine. It was great to have our happy gene activated by the sunshine. Did not really help with me being so tired, though. Matt warmed up left over ribs, which were great, and we had dinner. I went and took a shower after dinner, I was dirty too. The shower felt great, but I was still too tired. Matt and I put the boys down and I went straight to bed myself. 7 PM and I was in bed. I think I was awake for about a half an hour after we all went to bed....just because Ben was up. I finally fell asleep, woke up once to go potty (can you tell I am a Mom?) and then did not wake up until this morning after 6 AM. It was great.

I am feeling much better this morning. It is just too bad the sun is not shining. I was actually hoping to go to the park with the kids today. Oh well, we will find something fun to do inside today.

I am a bit sad that I have been so tired lately. I am realizing how much energy it take to keep my little body together. I am figuring out the ratio at which I can do things. I am trying to make sure we do one big thing each day. Unfortunately for me, one big thing could be grocery shopping at Walmart. This fall will be interesting since I am going to have to get up every morning to take Max to school.

Any ideas on how to get more energy? I am trying to cut back on caffeine, and go more natural.

Well, that is the update for now. I will try to keep you all posted as things happen.

Thanks for all the support folks.

The Week Starts

2010-05-10T10:09:00.000-06:00

It is the start of a new week and it is going to be a busy one. My shoulder is still hurting, but there is not much I can do about it. All the pain killers have messed up my digestive system. I thought my stomach was going to explode, but then it started and now it won't stop. One or the other...not sure what is better pain or constipation??

Today Max has school and I have to drive. I think I am going to wear the sling, but I know that I can still grab the wheel with both hands, if need be. It would cause lots of pain, but hopefully I won't have to do that. Tomorrow is school again. Wednesday I have to go to Denver for my physical for VA compensation. I am going to take the boys with, unless Bobbie can babysit. Thursday is Max's last day at school. They are having a graduation program. I have to make these strange treats for that day. Hamburger cookies??? We will see. Friday is my appointment to get knee braces and shoe lifts. Friday night I am going scrapbooking at Bobbie's and need to finish my page for Stamp Club. Saturday I have nothing going....spending time with the kids. Sunday is stamp club. Then we start all over again.....but Max will have no school.

My shoulder is still hurting and I am not sure I am going to be able to take care of the kids and not have pain. I will try. The boys are laughing right now and it makes it all worth it. They don't seem to mind that I cannot do much. They are keeping themselves busy.

Think positive thoughts, I am trying to.

Extremely Tired

2010-05-07T21:35:00.000-06:00

I went to the VA ER yesterday afternoon. It was an awful experience. I got there about 3:30 and did not leave until after 11:30. I did not actually make it back home until after 1. Tired, in pain and hungry. I did not realize that I had not eaten anything all day until my head hit the pillow, the drugs took over and my stomach started growling.

As I sat in the ER, it was a horrible night. It took hours to get to be seen. There were so many people there that had such bad problems. There was youngish man that fell down the stairs head first and there was an old man who had blood in his urine (which kept getting redder as the night went on). The place smelled bad....old old people and piss. After sitting there for 6 1/2 hours I still had not been seen, but neither had the man with the blood in his urine. The grumpy nurse finally came out and called my name. As much as I wanted to be seen, I could not really in good conscience go back while the man with blood in his urine was sitting there in agony waiting to be seen. I said to the nurse that I would rather give up my bed for that man to go back. She scoffed at me and turned around and left. She came back a few minutes later and got all three of us. I am so glad I did that. Granted my care could have been better, I made sure those two men were seen too.

I went back and the doctor never even touched my shoulder. He sent me for an x-ray. I could have told him that he was not going to see anything. Oh, wait, I did tell him that and oh yes, I was right. There was nothing on the x-ray. He just gave me some pain pills and an appointment to make an appointment. I think he really just thought I wanted the pain meds. Really, would I wait 6 1/2 hours just to get my hands on pain meds? I found out that the appointment he had made for me was just to see if I really need to go to ortho. What? An appointment to make and appointment.

I did call my primary provider today and asked if she could just make the referral. I was told that she could, but they had no idea how long it would really take for me to be seen. So, I am stuck wearing a sling, living on pain meds and being oblivious to the whole world. Unfortunately for me, I have a lot to do next week. I am going for my compensation physical for more VA benefits....I guess it is good that I will be in my sling and in pain for that....they might actually believe something is wrong with me since no one else does. That is Wednesday, Thursday is Max's graduation program from preschool. (I won't get started on that....my baby is going to kindergarten next year. Yikes). And then Friday, I have to go and get my knee braces and my shoe lifts. It is one thing at a time.....slowly, someday I will make it to the end of this journey and find someone who knows what they are doing and how to treat me.

Now for my political commentary on the whole experience. That is the VA healthcare system for you. I really hope that all of you never have to actually deal with the healthcare system that Obama has made. It will look much like the one I am dealing with. Taking forever to have anything done or see anyone who knows what they are talking about, all the while in extreme pain.

Off to ER

2010-05-06T08:48:00.000-06:00

So, I did something to my shoulder earlier this week. It was my fault...I played this stupid wii game for too long and really hurt it. I think it was out of the socket, but I got it back in. But, after days of anti-inflammatory, muscle relaxers, pain pills and whatever else they have me on.....it is still very painful.

Since my healthcare is all done through the VA, I have to get authorization from them to go some place local. I called my provider and they said they have no appointments. They wanted me to drive to Denver....really, possibly dislocated shoulder and they want me to drive to Denver???? So I called the pre-authorization and they did authorize me to go to local ER. Hopefully they will have someone who knows about EDS.

Down in the Dumps

2010-05-05T21:27:00.000-06:00

I had a really great day. I paid bills, there is still money in the account. Boys are snotty, but not super sick. We all played downstairs for most of the day. We had a great time. Matt has a meeting tonight so the kids and I ate alone and they went to bed well.

That leaves me sitting here...trying to find something to do that does not hurt too much. Sunday I was stupid and played a game too long...threw my shoulder out. Could not move my arms by Monday morning. Really needed to put my shoulder back in, but I could not move my arm until Matt helped me. I still have residual pain. The pain completely sidelined me for Monday. Yesterday....I am thankful for my sister-in-law. Without her I would not have made it through the day.

I guess I am just sitting here feeling sorry for myself. I know, I have heard it all before. Be positive, it happens for a reason, it will all work out, and enjoy the time you have. I am just having a hard time trying to figure out what to do now. It is so hard to be here....the only real support we have is 4 hours away. It makes it so hard to have a bad day. I love my husband and he is so super supportive, but I cannot ask him to take time off from work each time I am having a medical issue. Is it really going to be like this for the rest of my life? I said that I was going to keep living my life as long as I can, but the quality of life already sucks and it is only going to get worse. Do I just stop doing things? Sit on my ass and not live? Or live one day and pay the consequences the next. Makes me just want to cry. One more thing for my husband to worry about. I feel so sorry for him. He has so much to take care of. I am sure that he did not sign on for this when he said, "I do." He is such a wonderful man that he will never walk away from his responsibilities. What do I do??? Is it fair for me to keep putting my family through this? My 4 yr tugged on my hand the other day while we were playing and dislocated my thumb. I have never felt so awful in my life. I jumped and said, "ouch." Poor little guys started crying as hard as he could. He felt bad and was so afraid to touch me after that. It took him two days to be able to cuddle with me without being overly cautious.

What do I do now? There is no cure, no real help for pain. I really want to live and enjoy my kids, but I need help working through this. I have got to figure out how to live, enjoy my family and not cry out in pain every day.

I appreciate all of your words of encouragement and that might possibly be what I need these days. I really just want to feel normal for one day....not having to take the 15 different pain relievers, anti-inflammatory and all the other things they have me taking (none of which seem to be working well).

GGGRRRRRRR, what am I going to do, I put my smile on and pretend everything is all well, but it just isn't.

Major Pain

2010-04-28T20:02:00.000-06:00

So, today is the third time I have dislocated my right shoulder. Okay, maybe not totally dislocated, but it is not in the right place. I have had to "pop" it back in several times.

It really hurts tonight. I popped it back in and then Max came out to get a hug. I lifted him up to sit him on my lap and pulled it out again. I cannot wince in pain when he is around. It was completely my fault that it happened and if I even flinch, he feels like it was his fault. He cries so hard when he thinks he hurt Mommy. It breaks my heart.

Pain Killers and ice...that will be my life tonight.

Just Tired

2010-04-20T20:40:00.000-06:00

I have to say that I am just tired. I feel like I could sleep more hours in the day than I want to be awake. I sleep from 10 or so at night to 6 or so in the morning. Then I take a nap in the afternoon with the kids, at least one hour.

So, I am wondering if I am tired because of my body or because of my mind. It makes perfect sense that I would be tired. My poor little body works overtime just to keep itself together. It takes more effort for me to do everyday things. Walking is difficult, not impossible, but not like a normal person. It does take more for me to do all that most people do in a day.

I am wondering if I am just giving into that idea or if it really does take this much of a toll on me. I am tired and I know that I am struggling with this diagnosis. I feel some depression, so is it depression or is it physical? Mental or physical? I am so not sure.

I do get things done around the house and take time to play with my kids. It is just not as much as I would like to do. My dad and step-mom are coming here tomorrow. I feel embarrassed about how my house looks. It feels like it is a total mess to me. I know that it is not, but I just don't have the energy to do anything more right now. I am feeling limited. I have never felt this way before. Before, I knew that I was just lazy. My house was a mess because I just did not feel like doing anything about it. Maybe it bothers me now because I don't feel like I can do it all.

I am sure this makes no sense to all of you......I am not even sure it makes sense to me. I am just feeling crappy and not sure what to do about it. It is probably coming all to a head with me right now because Matt is out of town and I am getting ready for my parents to be here. I have been on the brink of tears several times, but never actually gotten there. Frustration is at an all time high. I am trying to take my anti-anxiety pills. Not sure how much longer that will happen. I am taking my daily pills....all that stuff. I am doing all right with the pain level, but on the brink with the mental side of it all. I may just have to give in and take the pills. I am struggling with this whole issue. Just like I am struggling with it all. I am trying not to give in to the idea that I am broken and tired or the idea that I need the extra help for my mental status. Maybe help with one will help with the other. I am just feeling so lost about it all.

There are other factors in my personal life that are making it all that much harder. Have you all seen those commercials where the big C follows people around them....reminding them that they cannot run away from their choices? That is what I am feeling this week. A series of poor choices when I was 18 and 19 have come back to haunt me, if you will. I guess not haunt me because it is not all bad, but it is heart wrenching. I am sure that these emotions are not helping me keep things straight this week.

What I do know is that I do not want to not be here. I don't want to quit on me, my husband, or my kids. I love my life and all that God has blessed me with. I have been given an abundance of blessings in so many ways. I may have had the door closed physically, but there are so many windows open to that beautiful blue sky.

Wow, I am all over the place tonight. I suppose that is why I have this though. Sometimes I just need a place to express things....whether there are people out there reading this or not. It is my space to vent.

Long Day at the VA

2010-04-13T10:01:00.000-06:00

Yesterday was one of the longest in my life. I went to the VA in the AM to see occupational therapy. That appt went great. I got all my braces for my arms and hands fitted properly and was excited about it.

Now for the long part. I have been having trouble breathing lately. It has hurt all across my back to just breath. I have been shallow breathing for awhile. So, I went up to the clinic where my arthritis doc is. Well, that clinic was closed yesterday. So, I was sent some where that I could not find. I tried the PT advocate. The office said open, but no one was there. I waited 15 mins and gave up. After talking to Matt we decided since I was having the problem right then, I should go to the ER so someone could see me while I was having the issue.

The ER at the VA is a total mess. I was taken back right away because I was having breathing problems. I went the back, but when they realized that I was not turning blue, I was left alone there for awhile. I tried to tell them about my EDS, but no one would really listen. So, I explained that I was having trouble breathing because there was horrible pain in my back each time I took a breath. The doc finally listened to my chest and thought that maybe my lung was collapsing. Really? A collapsed lung? So, I had an EKG, a chest xray and some labs done. I tried to explain that I did not think that it was any of that. I told them that I thought that possibly I had dislocated a vertebrae and it had gone back in place. No one would listen. Instead, they gave me a strong anti-inflammatory. Seemed to work a bit, but not really. So, I lie there a bit longer. Finally, I decided it was time for me to go. The pain had lessened and there were many others who needed to be seen too. I was angry that no one listened to me....but I have to say that when they were going to send me home I finally got someone to listen about something. They wanted to send me home with flexiril as a muscle relaxer. I explained that I had taken that before for many years and it did not work for me. So, they sent me home with something else.

So what they sent me home with was more of a neuro-blocker. They called it a muscle relaxer, but really? It never actually works on the muscles. Seems a bit odd to me. Whatever, it kinda worked for a couple of hours, but the pain in my back returned. Oh well, it happens.

I am just going to keep going. Breathing is easier today. I am happy about that. The pain is just going to be part of my life. I need to figure out how to live with it. The meds I took yesterday worked for a little while without making me too stupid. Maybe that will be a course for the future. We will have to see.

I am feeling pretty pain free today. Hopefully having spent some time in the ER will put this more on my record so people might start listening to me.

Trip

2010-04-06T08:49:00.000-06:00

We went out to see my in-laws for Easter weekend. We had a really good time. I put my hip out and I am still not sure if it is in or not. It hurts to walk and you can feel something move when I walk if you press there. Not sure what to do. I am still mobile, so I am going to let it go and see if I can just work it out.

We went to Church in Holyoke for Easter. It was awesome. The sermon was about how Jesus died for us to free us from sin. That we are blessed people no matter how hard things are here on earth, Jesus died for us all to be able to go to heaven. Pastor touched my heart so much that I started sobbing in church. Everyone says, "there is a reason for everything." Most people think that it has to be some grand help everyone in the world thing, I think the reason for me is to bring me closer to God and my belief in him. My mother-in-law gave me a wonderful Bible that has the explanation of each verse at the bottom of the page. I am really excited to start my Bible studies. I think I may have to get up a half hour early to start it.

My back is a little sore today from the 4 hour drive. My hip hurts a bit. And the kids are grumpy for little sleep, but the sun is shinning and we are all here together. I am so blessed to have all these people who love me and support me.

Grump

2010-03-31T07:36:00.000-06:00

Hello world. I am so tired today. It has been a long weekend and beginning of the week. We spent the weekend doing spring cleaning. I spent most of the weekend on my feet...it hurt my knees and back. I went to the park with the boys yesterday for 2 hours.

I am paying for all of that today. Last night I hardly slept because my legs were hurting so badly. It was a horrible ache all night. I woke up at 1:30 and never went back to sleep. Rolling around, trying to get comfy, made for a long night.

I have to admit, though, that my life has changed a lot since my diagnosis. I have realized what is important in my life and what is not. I am over all the petty things that make people so angry. I am finally living by my dad's words.....If you are not going to be upset about it tomorrow, why be upset about it today. I am just more calm about things. Well, not about the kids being pains, but everything else. I have been trying to be better with them too.

I am sitting here in pain today, but enjoying watching the kids play with the trains on the floor.

Paying for It

2010-03-26T08:20:00.000-06:00

Explicative, explicative. Pain has enveloped me today. I had a hip pain last night and it was bad. I used ice and managed to get it to not hurt so bad. (I am trying not to take pain meds.) I hardly slept last night when the pain started in my back on the left side (not the normal side)
I do believe that the pain has a direct correlation to the time I played outside yesterday. I think it waited because I was busy all day yesterday. I think the pain started when I slowed down. I still have not taken any pain meds. I am home with the kids and cannot take any. I try to be awake and alert for them, but today may end up different. I just want to curl up and die right now. I have not had this much pain in a long time.

Snowday

2010-03-25T10:01:00.000-06:00

Yeah! The boys and I went out and played in the snow this morning. I did not hurt anything and we had a wonderful time. It was my littlest one's first time to play in the snow and it was amazing. The snow was hard this morning and even though I did not get hurt, both of the boys did. Max got a bloody lip, but did not want to stop playing. Ben got hit in the face, but we did not realize he was hurt until we got inside. Now he has a black eye. We all have so much fun, I cannot wait until the next snow day.

Dang Thumb

2010-03-23T20:38:00.000-06:00

Crap, crap, crap!!!! I am so frustrated with my right thumb. It just seems to get disjointed so often. I was putting Max to bed and playing with him. We have tickle wars before bed....I did something and dislocated my thumb right then and there. I jumped away and Max freaked out. He feels so bad when I get hurt playing with him. He feels like it is his fault. I feel so bad.....I wish I could explain it better to him. It is not his fault at all. Maybe I should not play so hard with him, but that does not seem fair either. I am going to play with my boys no matter what, so I am just going to have to not react so much when I do get hurt.

My thumb still hurts pretty good.. It is the second joint back and that one is hard to reset by myself. Matt is at an internet thing. I am going to just have to wait. I am going to have to wear my cast splint tomorrow. We have a play date tomorrow and I am not going to keep my boys home, no matter what happens. They deserve to live a life and not have to be stuck at home or miss out because I am hurting all the time.

I know that I am rambling, but that is how my brain is working tonight. I just feel awful.....not so much for myself, but for those around me who have to deal with my situation. It is my alignment, not their's. I wish that they did not have to feel the repercussions from it. My little boys know that Mommy is fragile and they try to be careful, but they are little boys. We play and I love it, but sometimes I get hurt. Matt is afraid to touch me sometimes, for fear of hurting me in some way. It is hard to handle.......I am fragile and things happen, but do I stop living and doing the things I love so I don't hurt myself. Or, do I keep going, enjoy what I can and deal with the consequences. At this point I am willing to give all I can and enjoy every minute I can now....I will never get this time back with my family. My boys will only be little once. As they grow, I know they will not be so physical playing with me. So, enjoy it now is my new philosophy. I will deal with the rest later.

Pain in my right hand is pretty bad. I also tweaked my knee earlier...not complaining, just stating facts these days. No more reason to complain about it. It is part of my life and I am okay with that. I am just going to state facts the way they are. I hurt and that is my life. No sense in dwelling on it.

No travel alone

2010-03-22T18:31:00.000-06:00

My husband and I have been talking about me traveling home with the boys. I live in Co and would have to travel to Il. Matt cannot take a lot of time off during the summer because it is his busy time at work.

I have thought about driving. That would be an 18 hour trip...I would have to stop one night, at least. We talked about taking the train....that too would be an 18 hour trip, but straight through and no driving. We talked about flying...total travel from door to door, most likely 8-9 hours. So, having considered all of these things, I have decided not to travel home. I cannot imagine being with my 2 and 4 yr olds and having something happen on any of those trips. Can you imagine me with a dislocated hip or shoulder and two small kids. No one there to help me fix it??? and having them look at me all broken. It does not sound like a good idea to me.

Maybe air travel with the boys would be more reasonable if I was in a wheel chair. At least at that point they usually let someone go to the gate with you....or there would be a sky cap to help. Just a thought. We will have to see how it all works out.

I am still waiting on most of my adaptive gear. It has been one week, but I am hoping to get some of it soon. I would give just about anything for the parafin bath tonight. My hands hurt a bit. I would like some of the things I could use in the kitchen. I do some cooking yesterday and thought about how nice it would have been to have some of the things they are getting for me.

I am feeling pretty upbeat despite all the things that I have to think about before I do anything...ie traveling. I am getting out of the house at least every other day now, and not just to take Max to school. I went to my very good friend Joanna's for a scrap-shopping thing, then went to scrapbooking crop at Cynthia's on Saturday. Tomorrow we are going to the library....it is Max's spring break so they have fun things going on. Wednesday we have another library trip and then a fun playdate at Joanna's with her two little girls. I cannot wait....Max really enjoys them and Ben has not seen them in a long time.

I am still doing my Close To My Heart stamping workshops every month. I am also going to start doing a card work shop quarterly. I am looking forward to that in a couple of weeks.

We will be traveling to Holyoke, 4 hours from here, for Easter. I am very excited about that. I know that our plans have been moved back some, but I am still looking forward to looking at some houses out there. I love visiting out there. My in-laws are so wonderful. They always make staying there so much fun. I am looking forward to all the good cooking..... Rita is great. I am also looking forward to the egg coloring and egg hunt. I love visiting with our friends Luke and Shannon along with their girls. I cannot wait to actually move out there and not have to make the four hour drive. It is painful for me....sometimes we stop and I get to walk and sometimes we just drive straight through (depends on the trip).

All is well in the land of Charlee....hope everyone else is doing well.

Okay

2010-03-22T10:30:00.000-06:00

It is a Monday morning and things are going fairly well. I have some pain in my hip, but it is not bad. I just cannot get over how much pain there is. I have decided not to use my pain pills unless I really really have to do it. They cause me to be sick to my stomach and groggy. I miss my family when that happens.

My boys are still the light of my life. They make it all worth the effort these days. My husband is such a great support and I cannot thank him enough for all he does.

There are so many things to think about now....a little stressed out now....will post more later.

Cold day

2010-03-19T07:27:00.000-06:00

It is a cold day here. The snow has finally started, but the front come in late last night. I could feel every degree and change in the barometer. I do not have arthritis so much.....but it sure feels like it. I am wondering if I do have some sort of arthritis???? I suppose it is totally possible. Since the ligaments are stretched out the joints do grind upon each other. That could make the arthritis pain, I guess.

I am hoping to stay inside today......

Playground Mishap

2010-03-17T17:22:00.000-06:00

I took the little ones to the playground today. We were having such a great time. It was fun fun fun. That is until Ben started to fall off the side. I went to grab him and out went my shoulder. Yep, dislocated my shoulder right there at the playground. Think I may have scared a few parents and kids too when I yelled. I managed to round up the boys and get them to the car. I was able to get them buckled and get home not using my right shoulder/arm.

I managed to get us all home and decided I wanted to take some pain meds. I cannot get my bottle open though. I decided to wait for Matt to get home to get meds.....not sure I want to teach him to open med bottles yet.

I called Matt and he is going to pick up dinner for us. Today is our anniversary....sucks, I am going to have to take some pain meds and end up in bed. I am really sad about that.

I am not sure I totally got my shoulder back in properly. I am still in pain and I am not sure how to make sure it is in all the way. Not even sure how to do it without making more pain. Going to wait for Matt to get here, eat something and take pain meds before I try to have Matt pop it back in again.

Oh well....that is part of how this all goes. I just keep in mind that I was taking care of my babies.....I actually had a thought the other night about the rest of my life. Actually it was a whole series of thoughts about the future. I have lived a full life already and I am in no way giving up, but I will do all I can for my kids. I want to protect them and take care of them. The pain to me is just how it works....obviously I will not be going out of my way to hurt myself, but I am not going to let them get hurt because I am protecting myself.

Pain Level: TOO MUCH

Extra Stuff

2010-03-16T17:10:00.000-06:00

Wow, I actually made it to the Occupational Therapist yesterday. I was so surprised at all the things that had for me.

First, they were able to give me special braces for each of my fingers. They are funny looking rings to help keep the joints from dislocating. They also made a cast like splint for my right hand to keep my thumb in place. I am also getting 2 neoprene braces for each hand...those had to be ordered.

I was totally amazed at all the things that were ordered for me.....a number of assistive devices. It is awesome. I am going to be getting a parafin bath.....the heat from it is suppose to help with the pain in my hands. It is also going to make them nice and soft, just like going to the spa.

The guy ordered an automatic jar opener...it is huge...guess it is worth it. I have lost a bit of use of my right hand. I am also getting a nifty little tool that will open soda cans, pop bottles, and cans. I am getting a number of spongy things for pens and pencils to make them bigger for me to hold. I also got some tubing type stuff to put onto silverware to make it thicker.

A hair dryer holder....it is suppose to hold up my hair dryer so I don't have to use my arms to do it. Might be nice on my shoulder....we will see how it works.

Some sort of device to hold books open while I read...that way I am not stressing my thumbs.

A strange looking thing that slides across the counter so I don'.t have to lift full pots to get them to the sink.

Thicker tweezers and nail clippers.

I am sure there is more, but I cannot think of all of it right now.

Yeah, someone is at least helping my situation be easier....not better, but easier.

Okay

2010-03-11T20:22:00.000-07:00

Tonight I am sitting here, happy and content. Unfortunately, I did dislocate my thumb today. I picked Ben up and was playing. I had him in my arms and pretended to drop him....and just as I caught him......ouch. Popped it back in, but it still hurts.

Overall, today was a good day. I managed to get the walmart shopping done. I even went back again for shoes for Ben....Max got some the first time, but then we realized Ben needed some too. We managed to get all the grocery shopping done too. Yeah.

Ben managed to throw up all over the house again tonight. I am not sure what is going on with him. He did not really want to eat and we tried to make him eat anyway. I should know better. He always seems to throw up after we force him to eat at night. Not sure what is going on with him.

Tomorrow is a stay at home day...possible a pj day. We like those days. We most likely will be downstairs. I have to get the house cleaned up for my stamp club this weekend. I also need to finish the 2nd page for this meeting. I am really excited about it.

today

2010-03-11T06:58:00.000-07:00

Today is another day. I woke up pain free. That is so awesome. I slept fairly well, I guess. Again, I was on the couch. That makes such a difference. I am not sure why, maybe because it is so soft?

This is on the same thought....promise. Matt and I were thinking about going to Fl to see my parents. Southwest now flies into a city near there....$139 per person one way...so, for four of us, it was about $1200. Matt and I talked it over and as much as I would like to see my family, a new mattress would be better. It would be so nice to be able to sleep in the same bed as my husband again. So, we are going to forgo the trip to FL and save that money for a new mattress. It is not like we had the money for the tickets right now anyway. We will have to save for it still.

Not much planned in my world today....play with the kids this morning....school for Max and then the grocery store. Pizza for dinner so I don't have to cook. Then survivor tonight.....that is all.

Just Don't know

2010-03-10T20:54:00.000-07:00

I am sitting here alone tonight....boys are in bed, Matt is at a computer thing and I am left to think. Not a good thing for me lately. Really, I am trying to be positive and on a daily basis I am generally happy.

But here, I can admit that I am still so not so sure about all of this. I know that I am going to be around for all the good times with my family, what I am not sure about is what condition I will be in to enjoy those things.

This week has been rough and it is only Wednesday. Our family ended up with the stomach flu....fun....it was all that they make it out to be in the movies when Mom is sick and still taking care of the puking kids. My husband was so great Monday to let me stay in the bed most of the day. I ended up there through the night. I awoke at 3 AM hardly able to move. My back was in so much pain that I could not move. Matt had to get up and move me to the couch. (It is more comfortable there) In the morning I was still drugged and in pain, so Matt moved me to the basement on the Futon. I think the couch and futon are nice because they are extremely soft and have something to lean against. That is beside the point though. I was still in pain when I finally came around at Noon. That made me sad. Just plain sad....I have been wondering if it is going to be like that form now on for me. Am I going to go through these episodes of pain, take the drugs and be out of it for a couple of days?

I am still in the infancy of my understanding and handling this condition....what I am hoping for is that some day I can come to terms with this and have a plan. God is out there and put this on me for a reason.....I need to figure out what that reason is....once I do that, I can use it to His work. I believe there is a reason for this....it is not a punishment, but a blessing on some other level. I have to say that it has made me appreciate the things in life I can do right now. I love being around my kids, spending time with my husband and just having a pain free day.

I pray that God will show me the way and I will take the time to see what he wants for me to do.

What Is Next

2010-03-10T07:40:00.000-07:00

I am not entirely sure what is next. I know that the VA has pretty much washed their hands of me. Unfortunately, that is my healthcare right now. I am okay with the fact that there is not going to be any huge jumps forward in my condition. I have accepted that.

What I cannot accept is that there is so little information out there and nothing helpful out there. I have decided that this must be my calling in all of this. I am going to start putting together information about EDS and what you can do for it all in one place. I will also put info about what others have tried and what has worked for them. Maybe even a list of good docs? This is just my dream right now...hopefully I will be able to afford to run a website one day and have it help everyone. Money is too tight right now, but we shall see.

hi

2010-03-06T07:31:00.000-07:00

It is the beginning of what promises to be another long day. Matt has wrestling today....all day. I am not feeling well.....my throat hurts, head is stuffy and my chest is getting filled up too.

Good news is that nothing else really hurts today. I am hoping to get my scrap page done for next weeks stamp club. It makes me happy to have these type of things to do.

Braces

2010-03-05T15:27:00.000-07:00

I went for my brace fittings today....that was a joke. We will have to see how they turn out. The guys did not really seem to know what he was doing....the lifts might turn out well. He did take a full impression of my foot.

My knees are another story....he took one measurement. That was it. I am hoping it gets done properly.

The SI belt will be interesting too....he went on google to find one.

Grrr.

Better

2010-03-04T19:53:00.000-07:00

I am feeling better tonight, maybe not physically, but mentally. I am happy....I have just found myself. I realize that I cannot let this stop me from living my life.

I am going to keep playing with my kids and enjoy every moment of it. I cannot live my life afraid of dislocating something. It is bound to happen no matter what I do, so why not take the time I have to enjoy life. I love my kids and I don't want them to feel like their mom is missing in their lives. I can do things, it hurts and I could get hurt even more, but I am willing to take that chance to "live" my life.

I hate to admit this to anyone outside of my family, but I have slept on the couch for a little over a month now. It has just been more comfortable than sleeping in the bed. I have been able to sleep a little better, without as much pain, but it is lonely. I miss my husband. I miss being in the same bed with him. I have decided that I am going to take a pain pill before bed and then again when I get up. It will be nice to be in the same bed with my hubby. I am looking forward to it. I have no problem taking the meds when I need them. I was trying to not use them, but now that I know nothing is going to change. I am going to use the meds to make my life better. I can do that.

So, I spent the day playing with my boys, not dwelling on the bad. I am happy, sore, but happy. The kids are in bed, survivor is on.....the only way to make this better would be to have Matt home and not at some meeting.

I will continue to post my pain level....it is kind of my outlet. I can whine here and try not to whine at other places in my life. Maybe I should get one of those purple bracelets that were so popular about not complaining.

Pain Level: 4-5 right SI joint, right shoulder and thumbs.

Damn

2010-03-04T08:38:00.000-07:00

I has been a long couple of weeks. Everyone is feeling better now and that makes me happy. Kids are being kids and driving me nuts sometimes, but I would not trade them for the world.

I went to see Dr. Rose yesterday and nothing good came of it. The visit was actually kind of depressing. I found out that the PT I have been doing is actually doing more harm than good. My SI joint is worse than it has ever been. The ligament is so stretched out that it will never be normal again. Sucks. She also hurt me by stretching the SI joint to see how much damage has been done. PAINFUL. I am still not pain free this morning.

I asked her if I could see a geneticist. There is not one on the VA payroll.....go figure. So, now I have to wait to see if they will out source such a thing. I am guessing no. We will just have to wait and see. I am hoping they do.....it would be nice to see someone who has seen EDS in a person before and not just read about it.

My meds have not been changed, just increased. The night pain in my legs is the worst. She told me to just take my sleeping pill earlier in the evening so by the time I am ready to sleep that I am sleepy enough to go right to sleep and not feel the pain. Ha, we will have to see if that works....I don't believe it.

I am back to where I started with no hope of improvement.....it is a bit depressing. I am trying hard to get myself in a better frame of mind......I am not sure what it will take. I think I need to sulk and get it out. I am resigning myself to the way this will be. I feel better already, now that I have written about it. Seems so silly to be upset about pain when there are so many others who are worse off than I am.

Having said that there are those worse off than I am, I am still going to take advantage of all that is available to me. I have filed for more compensation from the Army (they made my condition worse) and I filed for Social Security disability. I know it sounds funny.....I am 34 years old and filing for Social Security. It still bothers me a little, but the reality is that with the pain and the ligaments stretching more each day, I will never be able to work a real job again. So, with that said, I filed and we will see what happens. I would be nice to be able to provide for my family even though I cannot work to do it. I saw my counselor the other day and she reminded me that I am a person with a disability and I deserve it. (It is still taking some getting use to)

Friday I go to get my knee braces fitted along with a SI belt and shoe inserts. The knee braces will help to keep my knees in place, the SI belt too. The SI belt should prevent the joint and ligament from getting worse. It is kinda like wearing a gurtle for the rest of my life. At least it will be trimming and I will always look skinny. The shoe inserts are to make sure that my back is supported properly. Hopefully these things will help.

Monday I go to Occupational Therapy for arm and hand braces. I talked to the guy while I was there yesterday and he is talking fingers, hands, wrists and elbows. He asked how much mobility I need....I lauged and said that I have a 2 and 4 year old....what do you think? So, he is going to try to give me some support with mobility for the day time and then braces it all for the night (I sleep with my arms all curled up). Matt says I seem to hurt myself more at night than during the day. I guess that is true since I have no control over what I do at night. At least during the day I can be careful. Good part of all of it is that it is all removable. I like that idea. I can use them all when I need them and not use them when I want to do something. Example, if I want to play with the boys I can take them off to play......probably not a good example since that is when I should be using them. We will have to see how it all works out. Sounds like I am going to be robo-mom......LOL.

Pain Level: 4 -my SI joint is still sore from being manipulated yesterday.

Long week

2010-02-10T22:23:00.000-07:00

I have not posted lately and I feel bad about it. Unfortunately for me, we have been in the hospital with Ben (my 2 yr old) for the last three days. We will be here for several more. He has RSV and it is taking forever to get him back to breathing well.
It has been several long nights and it is going to be several more. My poor little baby. I will post more tomorrow. He is finally sleeping for the night and I am hoping to get some myself.

PT

2010-02-04T18:50:00.000-07:00

  So, I went to physical therapy this morning. Wow, I am so not normal. I found out that I have been relying on muscles that should not be engaged all the time. Debbie worked hard with me to start engaging my core muscles properly. All the muscles that I am suppose to use are not used at all. It was amazing how weak those muscles are. It was also amazing how much pain that can cause. I can barely do anything. She gave me less than basics. I do not even have the muscle to do basic pilates. I cannot believe it. She was very careful not to hurt my SI joint too much, but reality is that you cannot work the muscle to fix the problem without aggravating it a bit. I am super sore today and absolutely exhausted. I slept for 2 hours while the kids did today. My SI joint, my knee, and my right shoulder are sore. Debbie gave me some exercises to do every day. 5 exercises 5 reps once each day. Doing them properly, that is all my muscles can do without serious fatiguing the muscle. I am going to be going to the clinic 2 times a week for several weeks. I am hoping that might be enough to get me started on a better way of life.
  I am pleased that Debbie knows what she is doing. We did our work out and then she was able to manipulate my SI joint to take some of the pressure off of it. Amazing what she can do. She was full of information and helpful tips. She even gave me a workout ball to get the kids sitting on to build their core muscles to keep them from having problems developing.
  I cannot say enough about how things went. I am pleased, but cautious. I hurt, but in a good way, I think. I will know tomorrow - depending on how I sleep and how things feel.
  I feel like I should write more...maybe it is because I have not met my word (speaking) quota for the day. LOL.
  I am very tired and sore...once the kids go down I am going to take a pain killer and rest. Matt is out at a Drupal computer meeting tonight. Looking for some good job contacts. It is a time for wait and see.

Thinking about changing my diet too, any ideas on what might be a good diet to help inflammation? Just a generally healthy diet would be good too.

Pain level - 6-7 muscles are sore and joints ache.

Lots, Lots and Lots

2010-02-03T20:31:00.000-07:00

  So much has happened since I last posted. Still not sure the PT office knows what they are doing. I am scheduled for pool therapy next week and the week after. I start actually therapy tomorrow AM at 730. I am really nervous, almost scared. My knee is hurting a bit tonight. Really hope they do not hurt me even more. I am praying that they have a clue and don't break something. Can I say again that I am scared? I am.
  I did see a physiotherapist last week. She is the first person I have met who actually seems to know what she is talking about, which is good and bad. She gave me lots of information, but scared me all the same. Nothing is positive looking, but she did not count me out either. I cannot stop what is happening to me. I will always have loose ligaments, but I can work on my muscles. It looks like once the muscles in my body are retrained, I won't be relying on my ligaments so much. The hope is that I will be able to keep myself together and moving for a long time to come. Basically, I will be retraining all the muscles in my body. It will be lots of work. My muscles have been working in the wrong way because they have been working improperly. It sounds like a painful proposition and long term work. But, I am really hoping that this might work. I know that I will not be running again or doing the iron man any time in the future, but I can still be active. I am sure that there will be other sports that are going to be out of the question, but I am looking forward to finding out which ones I can still do.
  I am finding it harder and harder to deal with this on my own. My husband does the best he can, but does not understand daily pain. My family is all trying to be there, but really....no one can understand until they have been there. My poor kiddos think mommy is super fragile and are terrified they might hurt me. We do play some, but any time I flinch or squirm, they jump off and say they are sorry. It is heart breaking. I need to get my head around this and try to make it normal, instead of letting it ruin my life. I am really hoping that therapy will help. I am going to see my psych people at the end of the month too.
  I am trying to find positive in all of this. I am going to be filing a claim with the Army for the damage they did to my joints, even further than what they would have been. Good news is that when the physiotherapist saw me last week and ordered some things in the computer----there was a code for Ehlers-Danlos. That means that they have the code and can and will compensate me for it.
  I should also be getting braces for many joints soon. I know that my knees will be braced first and then possibly my hands. I am getting an SI joint belt, it is suppose to help me keep that joint in place so I can retrain the ones around it. I am also going to see an occupational therapist because I am slowing using strength in it. I have asked my physiotherapist about it and she told me that it is basically just getting worn out. I have stretched out most of the ligaments and will not be able to get that strength back. Sucks, but hopefully they will be able to help me figure out how to use what I have and keep it from getting worse.

We will have to wait and see.....I should be used to it having been in the military, "Hurry up and wait."

Pain Level - 3 right knee

Keep your fingers crossed that it is not much worse tomorrow.

Feels Like a Human Freak Show

2010-01-27T19:55:00.000-07:00

  I just got home from the physical therapist. It is really crazy to go somewhere for help for EDS and have people look at you like a FREAK. The first therapist kept purposely hyper flexing all my joints because he had never seen it before. Then they paraded each of the other therapist in and kept bending and twisting so everyone could see it. OUCH. Guess they know nothing about EDS. First rule, hyper flex joints as little as possible because it makes pain worse and stretches ligaments even further.
  So, after being the dog and pony show for the afternoon, I was told they basically don't know how to treat me. So, I had to suggest pool therapy to build muscle around joints, but not put the pressure on joints. They did mention bracing joints....did tell me that the knee brace the VA PT gave me was totally wrong and was doing more damage than good. The PT will call the Dr from the VA this week and get back to me next about a plan of action. DAMN. I am sorry, but that is a nice word for me right now. I want to use every word in the book right now.
  How can there be a syndrome and no one know how to treat it? I can understand that there is no cure, but at least some sort of treatment would be nice. I am 34 yrs old and I am not going to be in a wheel chair in 15 years when my youngest graduates from high school. If you know of any way to prevent further degradation of the ligaments, I would really appreciate it. I am going to deal with this and try to bring it to the attention of others, this is probably under diagnosed. How do I get the word out? The EDNF.org sucks. They do not give enough information.

PISSED OFF today, but hopefully tomorrow will be better.... I have the musculoskeletal doctor. Maybe that person will know more about EDS. Doubtful, it is the VA after all. But, if I keep telling the Dr what they need to know, I might just get something done.

Pain Level: 5-6 All over, thanks to the physical therapist.

Slowly getting Better

2010-01-25T18:53:00.000-07:00

  It is a new week and I am trying to make it around. I actually left the house and took Max to preschool. He was so happy to go, he hates to miss it. I also made it to Walmart, but I am paying for it now.
  I have two significant appointments this week. One, physical/pool therapy on Wednesday and an appt at muscularskelatal clinic.
  I have to say that I am just too tired to write much right now. Is that normal? Is my body using the energy to hold itself together? I am just getting more and more tired everyday.

Life is changing

2010-01-23T11:32:00.000-07:00

  First, I must tell you that we have decided not to move to Holyoke for awhile. Not only are we trying to save money, but we have decided that it would be better for me to stay where I can have easy access to medical care. Would not want to move and have stop therapy or have to drive 2 hours to do it. So, we are going to stay in the Colorado Springs area, but seriously considering selling the house and moving up north. Maybe we will buy a house up there or move into an apartment complex where there is a pool and a hot tub....both of those would be beneficial to me and aliments.
  Second, I have not been on here for several days. The reason is I slipped on a piece of paper on Thursday AM and popped my knee cap out. It easily went back in, but the swelling and pain was awful. Matt had to come home from work on Thursday and stay home Friday. (Have I told you how wonderful he is?) I could not put any pressure on it for a couple of days. Today Matt had to go and ref wrestling today, so I am on my own with the kids. I have put my knee brace on to keep it stable and have been using my crutches. I am able to take care of my kiddos with help from them. Max (4 yrs) has been a tremendous help. I hobble into the kitchen and Max gets things and carries them for me. I am hoping to go to my friend Joanna's for her clothes give away. She has so many cute things....and she is giving them away. Not sure why, but I certainly will be donating to her donation box. She is not expecting us to pay for things, but she is in a tight spot. So, I will be helping her.
  I have an appointment to go to therapy on Wednesday next week. I cannot believe that it happened so fast. The VA usually takes forever to get things done, but the day after my Dr. put in the request the sports and spine clinic called. I am going to get my evaluation and hopefully get started on therapy by next Friday.
  Speaking of next weekend, I am going to get some alone time. My husband will be taking our boys out to Granna and Grandpa's. It is nice to have some time alone every once in awhile. I also have my first really gathering for Close To My Heart. Jenny is hosting it and she is such an awesome hostess. She sent 30 evites out already. Yeah. Have a bunch of cards to get ready. Guess that is what I will do Saturday without the kids or interruptions.

Pain Level: 6-7 left knee

Forgot to tell you

2010-01-21T07:34:00.000-07:00

My doctor called from the VA yesterday. She had some awesome news. I was very afraid that I was going to end up with a government therapist that knew nothing about EDS, but that is not my fate. Dr. Rose was able to out source my therapy to a local therapist that specializes in EDS and can do pool therapy. Hooray. Who would have guest it? I am so excited. It will most likely take a couple of weeks to actually get started, but at least I get to do it.
I should also be getting my cane this week. Not so excited about this, but at least I will have it when needed. I have decided to get my shiny little jewels and my hot glue gun. I am going to make it mine.

Pain Level: 3 - right hip

Update on my current issues

2010-01-20T18:45:00.000-07:00

  I am sorry it has been a couple of days since I posted anything here. I have been lying on the couch in pain most of the time. My husband has been fabulous and he stayed home yesterday to take care of the kids.
  My hip still hurts, but not as bad as it has the last couple of days. The muscles around it are still swollen and painful. I believe it has corrected itself and is back in the proper position. The coldness has gone away. Amy told me that is a really bad sign and if I have it again, I should go see someone. I will have to be more aware of that in the future. I did leave the house today and run around town a little, but I made sure to use my handicap sticker so I did not have walk as far. At least every place I went, my business was right inside the door and the bank was even drive up. Funny how I now have to think about and plan these things before going out.

  I am still in good spirits, despite the pain. I have almost made my first month sales goal of $300. I am so close that if I get one more order I might just make it. So, if you are interested in helping me out....go to......
charlee.myctmh.com. You can order directly from the site and check out there too. I am also thrilled to say my dear friend Jenny is going to host a card workshop in a couple of weeks. I am so pumped about this new opportunity to share my love of card making and scrapbooking.

Hugs and Kisses to all, along with prayers for all of those affected by EDS.

CRAP that hurt

2010-01-17T19:22:00.000-07:00

  I had a great day.....I did my first stamp club and it was awesome. The pages we did were great....I am so proud of myself. My friends had a good time and I made a few bucks. Yeah.

  Now to the bad part. I closed the gate to the stairs when everyone left. So, on my way back up from cleaning up, I stepped over the gate. My hip popped in 3 different spots. Holy Crap that hurt. I am sure I dislocated it and I not sure if it is back in place properly. I am still in a bit of pain...took 2 pain pills, but it still feels cold. It is really a weird sensation.

  That is how it goes around here.

Hello

2010-01-15T07:47:00.000-07:00

I woke up essentially pain free this morning. Unfortunately, I woke up with a headache. I think those are the worst kind....who wakes up with a headache?
Nothing planned today.

Good VA

2010-01-14T21:17:00.000-07:00

Today the VA gods were nice to me. I called and had intended to leave a message for Dr. Rose, much to my surprise she was there and answered the phone. What?! That never happens. She was super nice. She said that she had taken the time to go over the University hosp, which is connect to the VA hosp, and talk to her old boss who is a specialist in this. What?! No one at the VA is ever proactive. Then I asked her about a cane for the days I am having problems with my knee. I also asked about getting some stronger pain killers for the days that are really bad. "No problem," she said, "I will put those orders in right away." What?! Right away? That never happens. I asked her about finding a Physical Therapist in Colorado Springs who specializes in EDS. "I can do that," she said, "I will talk to the physical therapist we have there and see if he can recommend anyone." What?! That easy to get outside the system. I then told her that I had been reading blogs and chat rooms about EDS and a number of people had good results with pool therapy. She said, "I know of several physical therapy places in Colorado Springs that have great programs." "I might also get a one on one therapy set up for you, let me see what I can do," she said.
I am totally blown away about this turn of events. Usually the VA is a bunch of red tape and waiting months to get answers or see someone. I am so thrilled. I think I may have found the one doctor in the whole VA system who gives a crap about her patients. Yeah for me. I may have to send her chocolates or something, a thank you card for sure. Dr. Rose rocks.

New Day

2010-01-14T11:15:00.000-07:00

  The beginning of a new day. Well, not the beginning.....we have been up for several hours (more like 4 hours). My little ones are just like an alarm clock. Even though I did not get much sleep, Max had nightmares all night, I am feeling pretty good. Sleepy, but pretty good.
  I got up, fed the kids had some coffee, washed my face and got dressed for the day. It always makes me feel good to do that. The people at Max's school are probably wondering what happened to me the last several weeks. I have not really gotten myself together until this week. No make up and sweat pants were the only things I wore. I did not really even do my hair. I wore lots of baseball caps.
  While I am feeling better, I am still worried. I have been reading a chat group from yahoo and it makes me so sad. It used to be a group that focused on kids and last night I went to bed writing an email in my head to the group asking for adult support. Well, this morning I got on and there were a number of adults on there. They were talking about pain and how to deal with it. There was someone talking about SI joint injections and the pain they had. It is just the same as my pain. They were saying that it is caused from the SI joint dislocating itself. WOW, finally someone with one of the problems I have. Not good news though, the conversation was not hopeful. It was about what kind of canes, walkers, and wheel chairs to use. Several people were saying how they plan every step of their day out to avoid too much pain. Grrr, really, this is what I have to look forward to?
  I am already looking for a cane, but they are not really in the budget. We will have to figure it out or I will end up with the standard gray metal one. Ugly, but I guess if it helps me walk a bit, it is what I will have to use. I am not ready for the idea of a walker or a wheel chair. I am only 34 years old, but my body feel like it in the 70s. A walker, I just cannot even start to believe it might be part of my life shortly. I have two small boys and I want to be able to enjoy them as long as possible. I just don't know what I am going to do. If I spend most of the day on the couch, I can do things with them for a couple of hours. But, if I do that, I don't get much done around the house then. It is so unfair to ask my husband to do so much for all of us. He already works 40 hours a week, refs wrestling twice a week and takes care of us.
  Well, enough of my ranting for the day. I have to get up and get the kids lunch ready and then it is time to take Max to preschool. Can you imagine me doing that with a cane or walker? to preschool, really?

Positive for the day, I am working on my club pages. And, I am so excited, I have 7 people already signed up for the monthly club. I also have 2 guests coming this month. If anyone out there is interested, I can send you the pages and recipes to make them....we could figure out the cost or amount to order....we would also have to figure out how to make you a hostess one month so you can get the benefits.

Pain Level today - minimal....left ankle.

End of the Day

2010-01-13T20:51:00.000-07:00

It is the end of the day and I got a few things finished. The kitchen was clean, before I cooked dinner. Why does living have to be the same thing? I did do some laundry, that will have to be done again next week. Same with the pain in my life...today it is not so bad, but tomorrow we will have it back. Just a vicious circle that goes round and round.

Okay, maybe I am not out of my funk. At least an old friend came back into my life today....she has always been inspirational to me. She does not see it, but she has been through a lot and is still going strong. I am glad she is back. Just a quick shout out to my granola friend (LOL).

Pain Level - Up from earlier in my knee and ankle - 5

Day at home

2010-01-13T08:55:00.000-07:00

I am hoping that today is a quiet day at home. The boys are playing with the race track and I am watching the Today show. No preschool today, so we are making it a PJ day. We are hoping to just stay home and hang out. I am feeling pretty, so hopefully I can get the house picked up and cleaned a bit. When I am hurting things are not getting done....go figure. I would love to have a house cleaner, but Dave Ramsey says that is extravagant. So, that is out! I will just have to push myself and do it. Pain pills, real ones, are going to become my best friends. I have tramadol, they are not suppose to be habit forming. Well, that is one of the good things about it. I am always scared of becoming addicted to meds.

Pain Level: 1- just in my left ankle.

Long Day

2010-01-11T20:12:00.000-07:00

  I have had a long day today. It was actually pretty good. I got the phone, internet and cable switched over to qwest today. I am very happy about that....Dave Ramsey just saved me $55 a month. One step closer to being out of debt.
  I did go to Walmart to do the grocery shopping. That was trying all on its own. I was feeling good when we started. Max and Ben were a handful, but we got through it, in an hour and a half. I gave in and did go to McDs for dinner. Came out of my allowance, but there is no way I could have stood on my feet and cooked after that trip. I realized on the way home that my right leg was hurting. I managed to get the groceries in the house (Matt is at a wrestling meeting) and get the kids fed. I was done after that....I got the kids to pick up their toys and got them to bed. Yeah!
  I am not hoping that Ben will go to sleep. He has had a hard time doing that lately, makes for a long evening. But, he is quiet right now and I am sitting on the couch with a heating pad. Makes me happy for now....Darn forgot the M & Ms.

Pain level: 5 right leg (hip,knee,ankle).

Feeling Better Today

2010-01-11T07:57:00.000-07:00

  I am finally feeling much better today. I think a full days rest was really helpful. My husband was amazing yesterday. He took care of the kids and did all the cooking. He also carried me around as I needed or got my crutches for me. I am so blessed to have him in my life. I am so appreciative for him.
  Today's outlook is promising. This morning we are going to hang out quietly. Max has school this afternoon and then we are going to Walmart to go grocery shopping. Walmart is a hard place for me to go and not spend extra money. So, wish me luck! Dave Ramsey is already yelling at me in my head.
  Living with EDS is much harder than I thought it would. I already had the pain and it hurt, but waking up knowing the pain will never really go away. I am looking forward to my appt in March. I really wish it was sooner. I have so many questions to ask. I want to know how quickly this will progress. Is there anything I can do to slow that? Will changing my diet help me feel better? What activities should I avoid to ensure that I do not hurt myself further? Is there a different pain med that can help me any better than what I am taking? Should I file for more VA benefits? Since it is not in our budget, can the VA pay for my pass to swim? Will it always be an up and down roller coaster? Lots of questions.....maybe I will call up there.

Positive for the day - I am looking forward to getting some things done around the house. I would like to work on my scrapbook pages tonight (stamp club is on Sunday). Matt got paid from one of the tournaments he did for wrestling, so we can switch from Comcast to Qwest (may mean we are off the net for awhile). I am feeling great this morning (compared to this weekend).

Pain Level : 3 hips and knees.

Caffeine Is My Friend

2010-01-10T10:36:00.000-07:00

  Yet another sleepless night. Grump. The pain in my right hip and knee were awful. I am having to drug out on caffeine just to stay awake. Here is how it happened: By 8:30 last night everyone in the house was asleep (including my husband). I was on the couch with all the lights and the TV off. I was trying to sleep, even took a whole sleeping pill last night, had two pain pill too. But, it did not happen. I lie here dozing, I guess, but the pain kept waking me. By midnight, I was in so much pain I woke my husband up. Matt got me another pain pill, a heating pad, and my crutches. I had to potty and there was no way I was going to be able to walk that far.
  After that, I managed to sleep for a couple of hours. Too bad my 4 yr old decided that 5:30 was a good time t get up. I sent him back to bed twice....he is not suppose to get up until 6. At 6, I finally turned the TV on Disney for him. He was so nice, he took my pillows into my room for me. I crutched myself to bed. I did sleep for 3 solid hours after that. Matt got up with the boys and kept them quiet. I did not get out of the bed until 9. That was awesome.
  I am now sitting on the couch and playing on the computer. Matt is playing is Wii Golf, Max is watching and waiting so he can play Mario Cart Wii. Ben is wondering around playing with his toys. Great little imagination on that one. Max (4 yr old) has been especially sweet to me the last two days. He checks in with me every 20 mins or so, asking if there is anything I need or anything he can do for me (such a sensitive child). I am so blessed to have my family.....they are a great support and a great distraction.
  Lying still and not being able to do much is not my best quality. While I am not particularly active, it would be nice to be able to get up and get a drink or even go to the bathroom on my own. GRUMP!

Positive for today - it is a beautiful day outside. Sunny and 50...we may have to open the door for some fresh air. My boys (all three of them) are happy and enjoying playing together. I am enjoying my third cup of coffee, writing here and then going to make a grocery list. It would be a great day if I could get Matt to do the grocery shopping (LOL).

Pain Level: 8 Left hip and knee.

Anything to help the Pain

2010-01-09T14:54:00.000-07:00

Why is it that I cannot find anything to even touch the pain? My knee hurts and I just want to feel semi normal. Right now I can barely walk. I am trying to be positive, but I am not sure I can wait until March 3rd for more information on how to handle this. I know I have to live with this pain, but really, can't we make it more manageable?

Just Another Day

2010-01-09T10:17:00.000-07:00

  Today is turning out to be just another day. Matt is out to a wrestling tournament today, so I am home with the kiddos. While I am still in a bit of pain, we have been playing Hot Wheels and reading books. Now we are watching "Hook." Max seems really into it, but Ben is still playing with the cars and building things. It is fun to see how his little mind is working and growing.
  Last night was an awful night of sleep. My knees hurt so I took 2 tramadol and iced it for awhile. Right before bed I took the rest of my meds, to include my sleeping pill. I slept pretty good from 9:30 to 11:30, after that I could just not sleep well. Ben woke up coughing.....Matt had trouble sleeping too and actually got up and watched TV for awhile. I was awake every time Matt moved or every 30 minutes or so. I changed positions when I woke up, but still found myself in pain. My back was really giving me fits. We really need to get a new mattress, but now that we are doing Dave Ramsey, we will not get one for awhile. (I am hoping that when we move, we might be able to get the sleep number mattress from Grandma).
  I am hoping to get out of the house for some Mommy time today. I used to scrapbook weekly at a friends house, but that has not happened since before Christmas. I am hoping Matt gets home in time for me to pick up my stuff from Bobbie's and get to Cynthia's to spend time there. I want to get my scrapbook page finished for Stamp Club next week. I am really excited about that. If I cannot meet up with my friends, I need to get my stuff and work on the page here.
  I hope that all of you have a wonderful day. It is nice to not be below freezing here today.

Pain Level - 6 Lower Back, knees : 4 fingers.

My Ehlers-Danlos Syndrome Adventure

Frozen Shoulder

Still Here

Long Night

Pain and Illiness

I can't do that

Shoulder Surgery

Birthday dinner

Clean toliets

Catch up

New Blog

Ben Heart Update

miserable

I Can

Home

Not sure

Ben

Fall?

DISNEY

Almost

So sad

Hmm

Here we Go

Normal life?

Okay

God has said, "Never will I leave you; never will I forsake you." So we say with confidence, "The Lord is my helper; I will not be afraid. What can man do to me?"Hebrews 13:5-6

Scary words

Ready to Crumble

Done

good morning world

To Curl or not to Curl

Mom of the week (not)

Life

First Day

Annoying

New Beginnings Part 2

new beginnings

New things

priorities

Just thoughts

Sure

today

Freaked out

Tough week

boys

Forgetting other pain

Lazy?

Doctor visit

Trip to Chicago

At Mom's

Fear of Flying

okay

Sidewalk Chalk and Sunshine

Clean House

FIRE

Laundry soap

Noteworthy

The Week Starts

Extremely Tired

Off to ER

Down in the Dumps

Major Pain

Just Tired

Long Day at the VA

Trip

Grump

Paying for It

Snowday

Dang Thumb

No travel alone

Okay

Cold day

Playground Mishap

Extra Stuff

Okay

today

Just Don't know

What Is Next

hi

Braces

God has said, "Never will I leave you; never will I forsake you." So we say with confidence, "The Lord is my helper; I will not be afraid. What can man do to me?"
Hebrews 13:5-6