So……. where was I

So, I know it has been a while. I am mostly healed from my carpal and cubital tunnel surgery. I have my left side done in about a week, on March 4. Can’t wait to be done with those surgeries.

I saw my podiatrist, she decided that since the walking boot wasn’t working for my Achilles she would put my foot and ankle, actually it goes up to me knee, in a cast!! I am on my second one. There wasn’t any improvement in the first two weeks so now this second one I have to wear for 2 more weeks, then go back and see her. I’m guessing either she will put me in a new cast for 2 more weeks or we will talk and schedule surgery. I just hope I can walk on it when she is done. I don’t think it is just a simple case of tendinitis, I think it has more to do with my osteoarthritis. I think it is just tearing it apart. There could be a bone spur there too, who knows. I have developed so many of those in my life.

I missed my appointment with the new rheumatologist. I’m still mad at myself for that. I went to the school and did Monday folders, just like I do every Monday, or Tuesday. It was in the afternoon before my husband noticed that I had an appointment written on the calendar. Of all of the appointments I could forget about, I can’t believe I forgot about that one. I called the office to make a new appointment, I was sure to let the lady know that I actually REALLY wanted to be there. Now I have to wait until like May to see him. I plan to call and see if they get a cancellation but with the time it takes to get in to see him, I’m not expecting that to happen.

Also, I have apparently been nominated for the Very Inspiring Blogger Award. From what I understand there are some rules that go along with this award. These are the rules I have been told about.

1. Display the award logo on your blog. (Check)
2. Link back to the person who nominated you. (I think I’ve accomplished this a few times)
3. State 7 things about yourself.
4. Nominate 15 other bloggers for this award and link to them.
5. Notify those bloggers of the nomination and the award’s requirements.

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The person who nominated me writes a wonderful blog on here called bipolarbetty2. She is a great friend of mine, her name is Amanda and I thank her for thinking this blog is good enough to even nominate, not to mention you have to pick 15 people to nominate as well, which can’t be easy. lol

So, now I need to state 7 things about myself. Let’s see if I can think of at least a few things I haven’t already said on here. I know some are going to be repeated though.

1. I suffer from more than one thing that causes chronic pain.

2. I have a seven-year old daughter that means the world to me.

3. I married my high school sweetheart. We have been together since January 2 of 1999. We got married on October 30, 2004.

4. I have had 7 surgeries since December of 2005. I have 2 more coming up, one of them is in about a week.

5. I’m always tired. I could take a nap everyday, sometimes I actually do. There are days that I actually can’t stay up, I basically sleep all day.

6. I need to file for disability. I’m 3o years old and can’t work. I can’t stand all day, I can’t sit all day. I can’t do anything for hours.

7. When I have to go shopping I have to use a wheel chair or scooter. I can’t shop without it because I can’t make it through the whole store without it. This is the thing that I feel worst about. I’m only 30. Why do I have to live like this?

I also am supposed to nominate 15 other people and notify them that I nominated them and what the rules are. I’ll take care of that later.

I hate that I am constantly complaining. I do have a lot to be thankful for too. I couldn’t do it without my family. As much as I hate it, even my daughter helps me. I think it’s great that she is so caring and willing to help but, I hate the fact that I need her help sometimes. I am supposed to be taking care of her, not the other way around. I can’t wait to get my cast off and have everything go back to normal. I need to be able to do some things and with this cast on I just can’t. I think I’ll feel better when I can walk.

I will make a post later with all of the 15 people I am nominating for this award. For now I am going to rest.

 

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Life After Surgery

So I have had my carpal and cubital tunnel surgery on my right arm. I was amazed as to how quickly we were out of the hospital. I got there for 6 am and we got home at about 10:30 am. My arm is all wrapped up with gauze and an ACE bandage. I don’t get to take it all off until Saturday, I can’t wait. The gauze is making my arm all itchy. I’m doing fairly well since surgery, except I keep automatically trying to do all of the same things I usually do. My arm really yells at me when I do something I shouldn’t. I’m still not sure how long I will have to wait to get this surgery done on my other arm. Plus in about 2 weeks I find out about my ankle.

I’m pretty much expecting to have to have surgery on my Achilles. I’m sure that one is going to be REALLY difficult. At least I have had 1 ankle and 2 foot surgeries on the same side so I have a small idea of what to expect, I think. This is definitely going to be a painful year. Three surgeries plus my pain management doctor keeps trying to get me off of pain medication. I understand why but I’m not someone just trying to get medication. I really do have chronic pain issues. I’ve got too many issues and have had too many surgeries not to.

I’m really looking forward to seeing my new rheumatologist  in a couple of weeks. I’m really hoping for the best. He does clinical trials and everything so I am hoping he will have ways of helping my pain that nobody else has tried. I need something a little different. He’s also an immunologist so he may have a completely different way of looking at fibro because of it. There has to be something more that can be done. I keep looking up different pages and sites about fibro hoping I will find something new and different or something that explains more about why I am 30 years old and have  osteoarthritis bad enough to keep having to have surgeries. There has to be a reason. If any of you have any ideas please let me know.

Day 17: Horrible, Horrible Pain

Today is an extremely bad day. Either the pain woke me up or I felt it IMMEDIATELY upon waking up, probably the first one. We are expecting rain, snow and a rain snow mix. Not to mention that the temperature has drastically dropped. Any one of those would cause me to hurt. When you put all three together is it just horrible.

Then add to it that my pain management doc reduced my pain pills again. So there goes another reason to hurt. I understand what she is doing. I’m young and on a very strong pain med. I will obviously build tolerances the longer I take them and I will need some sort of pain med for the rest of my life more than likely. Things aren’t getting any better. I have my carpal and cubital tunnel surgery on my right side done on the 21st. I will have to get my left side done as well. Plus my achilles tendinitis just keeps getting worse. I have had 2 injections, physical therapy and 1 round of 4-6 weeks in a big boot already. I am now doing a second round in the boot. Doc says if this doesn’t calm it down then I need to have surgery. So that is definitely 2, probably 3 surgeries that I know about ALREADY this year. If I do need to have all 3 I will be up to 9 surgeries since December of 2005. I’m 30 years old and falling apart. I feel like I’m 80 or 90.

I shouldn’t have to worry about what surgery I’m going to need this year or if my neck is being further damaged. Or where the next bone spur is going to pop up. I shouldn’t have osteoarthritis that is already quickly and seriously damaging my joints. I really hate that I can’t see another way for me to bring in an income for my family is to file for disability. I should be able to work and I can’t. I can’t sit or stand for any length of time, I’m always in pain.

I can’t make plans because I never know how I am going to feel. I have to use the electric scooter just to do my weekly shopping because it causes too much pain for me to try and walk. I usually like to do my shopping on Saturdays but I can’t even say for 100% I will be able to do that every Saturday because of my pain. I couldn’t do it today. Hell, even when I do use the scooter to do my grocery shopping I have to bring a cushion to put on the seat of the scooter so that I have more padding for my hip and back so that I don’t hurt quite so badly.

I really hope that I am able to find a doctor that will know exactly how to help me. I need someone that understands and can make my life easier. Not like help at home easier, I have that. My husband is wonderful and does everything for me. But I need someone that can help reduce my pain. Someone that can make having all of these problems just a little easier to deal with. I need someone who is going to take my pain seriously and really do something about it. I need my pain better controlled. Living with the pain I have, especially the kind of pain I have tonight is SO hard. It makes life unbearable. Nobody should have to live like this. This would be considered cruel and unusual punishment if it were to be inflicted on a person by another person. It literally brings tears to my eyes. Things have to get better. I just don’t know how to deal with this as it just keeps getting worse. It is so hard. 

Day 16: More Fibro News

I have been on Facebook tonight looking at different posts from different fibro groups. One in particular stood out to me. An expanded list of fibro symptoms. I thought I would share it with you. There were things on this list that I suffer from that  I had NO idea were related to fibro.

http://www.mdjunction.com/fibromyalgia/articles/fibromyalgia-symptoms—expanded-list

If you suffer from fibro or know someone who does, this is definitely a site worth taking a look at. I warn you ahead of time, the list is long.

I haven’t been doing much recently. I will be having surgery on the 21st, which I believe was in my last post. So I will be preparing for that. I get all my tests and see the NP who will release me for surgery this coming week. I can’t wait to see this new rheumatologist. I’m really hoping he will have some treatment that will just work wonders for me. lol Can’t blame a girl for dreaming. I’m not going to get my hopes up too high.

I have been very sore and tired recently. I don’t know if it is catch up from Christmas and New Years or what but it has been hard. My muscles are spasming, which hurts and I feel so drained. I hate feeling like this, I really wish I didn’t have to live with this. I’m sure everyone with fibro feels that way. They need to come up with something that will really help us because what is out there now just doesn’t do it.

I tend to do a lot of research about fibromyalgia and everything that can go with it. When I find good and informative articles I will try to share them with you. There are some things that people just don’t know and it really helps to know. Actually, if you are having trouble explaining how you feel to your family I have a great article for you.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

It is really the best description I have heard for any chronic illness. It is definitely worth checking out as well.

I hope the websites that I posted will help someone. Talk to you all again later.

Day 15: Just Past Christmas

So, I know I haven’t posted in a while. Things got very busy before Christmas. I wrapped all of my presents in two days, big mistake. I hurt badly for two or three days after that because I worked too hard. That is one of the biggest problems, other than the pain, that I am having with my fibro. I still haven’t figured out exactly how to limit myself and space things out. When I need something done I try to do it all as quickly as possible and I know it isn’t good for me to do, but it is so hard not to do. That is one thing I definitely need help working on.

Christmas did go well though. My daughter got lots of great stuff and really enjoyed her Christmas. I got some great stuff too. Of course, I finally get myself something really nice this year. A great opal and pink sapphire ring. I haven’t gotten myself anything really great in a long time. So anyway, I get the ring in the mail because I had to have it sized. They sent me the wrong size, as a matter of fact, it was two sizes smaller than I asked for. So now I’m going to have to send it back and get the right size sent, again, hopefully.

I saw the doctor last week about my wrists and elbow again. We scheduled surgery. I am having the right wrist and elbow done in January and after that is all healed then I have the left side done. This is going to make eight surgeries since December of 2005. And I only just turned 30. I can’t work because of pain from my hip surgery last August, not to mention my fibro and the fact that I have to keep having surgeries. I get one thing healed and then something else pops up and I end up having to have surgery on something else.

I’m also in some extra pain right now because my pain management doctor, Well NP, is trying to wean me off of pain pills. She just took me down from 4 times a day to 3 times a day. I thought we might wait until I started seeing her again after my surgery but no luck. I’m really hoping it is going to help like she says it will but, I do have my doubts. I mean, I really do have pain and it gets really bad, a lot unfortunately. I guess I am scared that this is going to end up being a bad thing. She is also one of those that believes that pain medication doesn’t help fibro pain, even though I know from experience that it does and so do LOTS of other people with fibro. It may not get the pain to where we would like it, but it is definitely WAY better than not having anything at all. It does allow us to do things we wouldn’t be able to do otherwise.

In February I start seeing a new rheumatologist. I can’t wait. I am hoping that he will be able to help me more than any doctor I have seen so far. The doctor himself has a good reputation from what I have read online. Everyone seems to like him. The biggest complaints were that he tries to stretch himself too thin and can’t spend enough time with his patients and his staff is rude. When I called there a couple of times the staff wasn’t mean to me, one lady seemed indifferent but that was about it. However, she did have my information from my doctor for at least 2-3 weeks and I had to call to get an appointment even though they were supposed to call me after they received the information. I just hope things like that don’t continue after I start going there. I am really hoping that this guy will be able to help me. From his website he seems to do and know things about fibro and RA and stuff that other doctors don’t know or do. He actually runs clinical trials and looks at things from an immunology stand point as well. Other doctors just said here try this, this and this and when none of them worked they didn’t know what else to do with me. I am really hoping that this guy is going to be different.

I hope that everyone had a good Christmas. I am looking forward to New Years Eve, I am going to watch the ball drop and hopefully see my niece on tv. She lives in Manhattan now for college and she is going to be there. How can you miss it during your first year of living there? 🙂 I hope everyone has a great New Years!

Day 14: Bad Weekend (for pain)

Here in WI yesterday and today have both been cold rainy days with some snow mixed in. Those three things separately cause an increase in pain. Put them together and it gets close to post surgery pain. I have had a really hard time getting my pain under control since yesterday. It’s a deep, achy, sharp, burning, stiff sort of pain. On these days the pain is all over, in every joint. All my muscles are tight and unwilling to loosen up. The nerves cause even more pain than normal. Every joint that usually aches some, or maybe even hardly ever at all, is highly flared. Having my hair lay on my back causes a burning pain on every inch of skin that it touches. Even my clothes can cause the burning pain. A burning pain that makes you feel like you are literally on fire. I hate days like this. Days like this are why I don’t like winter. It gets too cold and just like spring, there is too much precipitation.

I feel like I have been trapped in my bed for years. It is rare that I am able to find the strength to leave my bed for any length of time. My hip always hurts, if I step wrong it causes a sharp shooting pain from my low back all the way down into the bottom of my foot. It never actually goes away, it just gets less noticeable sometimes. Sort of like with pain medication. It’s not that it doesn’t help, like some of my doctors think. It’s that it helps lower my pain enough so that I can do the most important things. It just doesn’t make it go away totally, so I can’t do everything. Without it, I may never be able to get out of bed. The medication allows me to take care of my daughter. I can get up and make her lunch and take her to school. I can do folders for her class on Mondays. I don’t have to stand to do them, I can sit but I can also stand or stop and walk a little if I need to. I can’t do any of those things for any length of time so I can only do things that allow me to switch when ever I need to.

There is nothing fun about this disease. It changes everything. It makes life so much harder than it already is. It is so hard for people who don’t have it to understand what it is like, which makes it even harder on those of us that do have it. Unfortunately most of the doctors out there are caring for those of us that have the disease don’t really understand what we need. They tell us that this or that doesn’t help but we know differently. If we have ever had the chance to try something we know if it works but we don’t get to decide what we are given to help us. A lot of doctors don’t think that narcotic pain medication helps fibro pain but those of us that have tried it know that it does help. Especially for those of us that the majority of “approved” fibro medications don’t work on. We have a disease that there is no cure for and only the symptoms can be treated. If we have to have a surgery we have to be careful so that it doesn’t throw us into a flare. Some of us, like me, have had to have several surgeries and continue to have to have surgeries close together. Which increases our potential to have a serious flare even more. We have fibro fog which seriously affects our short-term memory. It’s like having Alzheimer’s without actually having it.

Needless to repeat, this disease completely changes our lives. I know it has changed mine. I has made taking care of my daughter so much more difficult. I’ve gone to school and am a certified medical assistant but I can’t work because of the fibro. Not to mention all of the surgeries I have had and continue to have. I worry about my daughter developing this disease. I don’t want her to suffer through the same things that I am. I want her to have a life without chronic pain. I have yet to find one good thing that having this disease has done for me. I just don’t want her to live that way. So, if you are reading this blog and you don’t have fibro, maybe you will look at people who do a little differently. And if you know someone who has it and you don’t believe them, maybe now you will think twice. And if you do have it, you know exactly what I am talking about, and I wish you the best of luck living with this disease.

Day 13: Busy, Busy, Busy

I know it has been a while since I have posted. I have been so busy since Thanksgiving. I like to volunteer at my daughter’s school, it seems to be the only thing I can do. Last week I helped out with the book fair and this week I am helping with Santa’s Secret Shop. It is a little store that the PTA puts together so the kids can come in and buy presents for their families by themselves. It is good for the kids and the money is used to do things for the kids in other ways. For instance, the PTA is building a new playground for the kids right now.

I have been exhausted at the end of the day, especially this week. But helping out at the school allows me to be a part of something and if I need to sit down I can and if I need to stand up or move around for a bit I can do that too. It allows me to change positions as I need to. Which is a HUGE deal for me. If I couldn’t do that I wouldn’t be able to help. Between all the surgeries that I have had and my fibro being able to sit, stand and move as I need to is very important.

I see the doctor on the 19th to talk about my wrist and elbow surgeries, and hopefully schedule them. I’m not expecting to be able to have the surgeries until January. These are going to be surgeries 7 and 8 since December 2005. Every time I have to have another one, I start wondering what is next. Next year it will be 5 years since I had a bone spur on the top of my right foot, so I’m due for that. It was 5 years between the 1st and 2nd surgeries I had for bone spurs on the top of my right foot too. Not to mention all of the tendonitis and arthritis I have in that foot and ankle. Plus I have been getting headaches recently, not migraines, just headaches. But they are multiple times everyday. I’m glad I see the migraine doctor this month.

I don’t know if I will be posting again before the weekend or not. So I hope all of you have a good rest of the week, and weekend just in case. LOL!