28 May 2010

At Mom's

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.

25 May 2010

Fear of Flying

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....

21 May 2010


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.

20 May 2010

Sidewalk Chalk and Sunshine

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

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.

19 May 2010


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.


Laundry soap

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.

18 May 2010


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.

10 May 2010

The Week Starts

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.

07 May 2010

Extremely Tired

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.  

06 May 2010

Off to ER

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.

05 May 2010

Down in the Dumps

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.