tag:blogger.com,1999:blog-64583042610510113372024-03-13T13:07:00.723-06:00My Ehlers-Danlos Syndrome AdventureHaving just been diagnosed with Ehlers-Dansol Syndrome, I am in need of an outlet to share my ups and downs. This may not be a daily blog, but I want to share. I am 34 yrs old and have been told I will live with chronic pain and chance of joint dislocation for the rest of my life.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.comBlogger110125tag:blogger.com,1999:blog-6458304261051011337.post-55544247647673835472015-04-02T09:59:00.000-06:002015-04-02T09:59:57.653-06:00Good Morning friends and followers....I have moved over to another blog. <br />
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I am now using Me and My EDS shadow.<br />
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http://meandmyedsshadow.blogspot.com/<br />
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I will be sharing my latest shoulder surgery tomorrow. Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-517848114037365892013-07-08T13:53:00.000-06:002013-07-08T13:53:10.282-06:00Wow, life has changed so much since I posted here last. <br />
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I am now living in Gulf Breeze, Florida and I love it. The moisture here in the air seems to help me so much. I have enjoyed spending time at the beach floating in the salt water. It is amazing how great it is not to have any pressure on your joints. <br />
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I also have to say that I have found the most amazing doctors here. When I lived in Colorado Springs, I had to continually educate my doctors on EDS. Here, everyone seems to know exactly what I am talking about with out any explanation. The Andrew's Institute has an amazing team of doctors. I love my pain doctor. He is so understanding and has got me on Cymbalta and I am feeling so much better. I am out there and doing things again. <br />
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We bought a house here that is a total do-it-yourselfer. My husband does most of the work, but I have been able to help do drywall and painting. Next is plumbing and more. I might actually get to try my hand at laminate flooring. I just hope this all gets done before our lease is up. <br />
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I am also embarking on the Close To My Heart business again. I love scrapbooking so much and these products are so awesome. This is going to be a busy month...I ordered lots of the new stuff and I am going to be part of several new artwork swaps with other consultants. I may post some of the artwork here when it is all done. Wish me luck.<br />
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Life is looking up in the Sunshine state, despite all the rain!Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-65692233214978873822011-10-27T21:57:00.000-06:002011-10-27T21:57:58.368-06:00Frozen ShoulderI have to wonder.....<br />
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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. <br />
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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. <br />
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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<br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com1tag:blogger.com,1999:blog-6458304261051011337.post-58249118448525138562011-10-26T11:37:00.000-06:002011-10-26T11:37:30.256-06:00Still HereI am still here....still not able to do a whole lot. <br />
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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.<br />
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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. <br />
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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. <br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-79247028373730310782011-10-11T09:29:00.000-06:002011-10-11T09:29:25.775-06:00Long NightI 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.<br />
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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. <br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-48695942487223794912011-10-10T09:50:00.000-06:002011-10-10T09:50:32.104-06:00Pain and IllinessI 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.<br />
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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?<br />
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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.<br />
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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. <br />
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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. <br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-45598747560067139082011-10-07T09:37:00.000-06:002011-10-07T09:37:11.506-06:00I can't do thatMatt 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.<br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-50968059612314565342011-10-05T13:43:00.000-06:002011-10-05T13:43:06.828-06:00Shoulder SurgerySo, it has been just over a month since my shoulder surgery. I really hope it was worth it. It has been a long road. <br />
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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.<br />
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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.<br />
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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. <br />
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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.<br />
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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. <br />
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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. <br />
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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.<br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com5tag:blogger.com,1999:blog-6458304261051011337.post-4311432833009947452011-08-24T12:12:00.000-06:002011-08-24T12:12:38.025-06:00Birthday dinnerTonight 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.<br />
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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.<br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com1tag:blogger.com,1999:blog-6458304261051011337.post-84347052114540681672011-08-22T14:23:00.000-06:002011-08-22T14:23:40.995-06:00Clean tolietsI 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. <br />
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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.<br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-28891003935515168032011-08-21T21:42:00.000-06:002011-08-21T21:42:47.888-06:00Catch upIt 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.<br />
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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.<br />
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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.<br />
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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. <br />
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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. <br />
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I will check back in as I get closer to the day. I am scared and will be looking for support here.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com1tag:blogger.com,1999:blog-6458304261051011337.post-35745331746840192142010-11-01T18:12:00.000-06:002010-11-01T18:12:08.122-06:00New BlogI 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.<br />
<a href="http://snipandsnailandpuppydogtail.blogspot.com/">http://snipandsnailandpuppydogtail.blogspot.com/</a>Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-84463935513193791632010-11-01T17:11:00.000-06:002010-11-01T17:11:00.489-06:00Ben Heart UpdateI just wanted to post a quick update for all my family and friends who have been praying for Ben. <br />
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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.<br />
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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. <br />
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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. <br />
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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. Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-27027115367174334172010-10-27T16:42:00.000-06:002010-10-27T16:42:06.478-06:00miserableI feel down right miserable. I have got some cold thing that is killing me...okay that is exaggeration. But, I am feeling pretty bad. <br />
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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. <br />
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I love my family, but I am ready to sleep.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com1tag:blogger.com,1999:blog-6458304261051011337.post-27283829753489675262010-10-25T10:12:00.000-06:002010-10-25T10:12:08.620-06:00I CanI 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. <br />
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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.<br />
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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. <br />
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I am feeling great....life is good. God is great and I give him thanks for all that he has given to me.<br />
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Dinner:<br />
<a href="http://family.go.com/food/recipe-cp-629856-chicken-and-sweet-potato-stew-t/">http://family.go.com/food/recipe-cp-629856-chicken-and-sweet-potato-stew-t/</a>Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com2tag:blogger.com,1999:blog-6458304261051011337.post-5305330002665560352010-10-24T21:12:00.000-06:002010-10-24T21:12:47.353-06:00HomeHome again, home again, jiggitty jig.<br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-86706412091688919622010-10-20T19:15:00.001-06:002010-10-20T19:52:25.240-06:00Not sureIt has been one heck of a day.........<br />
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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. <br />
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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. <br />
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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) <br />
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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. <br />
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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. <br />
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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.<br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com2tag:blogger.com,1999:blog-6458304261051011337.post-18017887680243547522010-10-18T21:42:00.000-06:002010-10-18T21:42:01.770-06:00BenSo, 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.<br />
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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.<br />
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<a href="http://1.bp.blogspot.com/_th5Ugnbyn9E/TL0TMMnNWZI/AAAAAAAAAVA/GAINpsAov3o/s1600/100_5843.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="http://1.bp.blogspot.com/_th5Ugnbyn9E/TL0TMMnNWZI/AAAAAAAAAVA/GAINpsAov3o/s200/100_5843.JPG" width="200" /></a>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. <br />
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<a href="http://3.bp.blogspot.com/_th5Ugnbyn9E/TL0THmN-cuI/AAAAAAAAAU8/F5FPgeY67f8/s1600/100_5842.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="http://3.bp.blogspot.com/_th5Ugnbyn9E/TL0THmN-cuI/AAAAAAAAAU8/F5FPgeY67f8/s200/100_5842.JPG" width="200" /></a>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. <br />
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Wait and see.....give it to the Lord and he will protect us.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com1tag:blogger.com,1999:blog-6458304261051011337.post-5263087913180088502010-10-18T12:23:00.000-06:002010-10-18T12:23:18.879-06:00Fall?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. <br />
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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.<br />
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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.<br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com1tag:blogger.com,1999:blog-6458304261051011337.post-33508499333622758062010-10-17T20:29:00.000-06:002010-10-17T20:29:14.940-06:00Not sure what to title this. It really is just going to be a smattering of thoughts......<br />
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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<br />
2nd - go to Paris<br />
3rd - go to Fiji<br />
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. <br />
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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? <br />
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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. <br />
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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. <br />
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Matt is a wonderful man and I am so lucky to have him.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-13555199515441986122010-10-17T17:09:00.000-06:002010-10-17T17:09:27.612-06:00DISNEYSo, 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. <br />
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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. <br />
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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.<br />
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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.......<br />
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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???Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-80359242505621656712010-10-13T20:27:00.000-06:002010-10-13T20:27:42.047-06:00AlmostToday 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. <br />
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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. <br />
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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. <br />
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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.<br />
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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.<br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-22724705919754273262010-10-11T21:47:00.000-06:002010-10-11T21:47:05.894-06:00So sadI 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. <br />
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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. <br />
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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. <br />
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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.<br />
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I thought the petiteness was over, but I guess I was wrong. <br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-80600166735292049452010-10-10T09:23:00.000-06:002010-10-10T09:23:25.229-06:00HmmWe 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. <br />
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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. <br />
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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. <br />
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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. <br />
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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.<br />
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God has his hands around Ben and will continue to protect him.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0tag:blogger.com,1999:blog-6458304261051011337.post-4177666215970003512010-10-07T16:13:00.000-06:002010-10-07T16:13:53.206-06:00Here we GoToday 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?<br />
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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? <br />
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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.<br />
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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. <br />
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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. <br />
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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.Charlee Klevehttp://www.blogger.com/profile/02581752550902631297noreply@blogger.com0