Non Knitting Related Post

This post has been on my mind for some time. Some people who read this blog already know some of the things I'm posting about and others I know deal with similar pain on a daily basis and can relate.

Things have been a little rough for me lately so the blog has kind of slipped into the background. I'm not sure if I've discussed my medical issues. I generally don't because I don't like pity but I have Rheumatoid Arthritis. Some days are good and some days are bad. With this last medicine swap I had about 6 good months before my meds slowly stopped working and the bad days started outweighing the good days. Add in a major SNAFU (link for all you curious folks who don't know what SNAFU is) with my referral to see my RA doc not being renewed which meant no visit to doc to talk about meds being swapped until the referral was renewed. I really wished I didn't need a referral to see my RA doc but alas the damned insurance company makes me get a referral to see all specialist. There are times when I really, really hate insurance companies but on the other hand I can't imagine not having it and trying to pay for my meds every month or the $250 office visit to my RA doc 4-5 times a year. It's a bill we could not afford. Unfortunately Rheumatoid Arthritis does not have a cure and I will have to see an RA doc for the rest of my life so why should I have to continue to get permission to see a doctor I will always need to see.

Most days people see a happy smiling person who tries to make the best of what she's been dealt. They don't see the inner me who is trying very hard to not cry and let people know how badly and how much pain she is in. Feeling complaining about it and feeling sorry for myself isn't going to change things. It isn't going to make the RA go away and I still have to deal with daily life: cooking, cleaning, taking care of my kids, etc. Shawn helps out where ever he can but he works 10 hours a day, 5 days a week and here lately a lot of weekends too.

Fatigue goes hand in hand with the swelling, pain and stiffness. I have to deal with things that a lot of people don't have to deal with. If I go grocery shopping I can't clean up the kitchen. It's a matter of checks and balance. The longer I'm on my feet the more I know I will pay for it the next day and the day after that and likely the day after that too. It's a mix of trade offs for things I want to do with things I have to do. It's not something I would wish on anyone not even my worst enemy not that I have a nemesis. Although having a nemesis might help me keep my mind off the pain some days. There are days when my hands are so stiff I can't button my buttons, hold a pen and write neatly, or tie my shoes without a lot of frustration and difficulty. I've taken to wearing pants with no zippers or buttons and I wear Crocs more often then not. Even knitting can be a challenge. Normally within the first hour or two after waking up I'm not so stiff and I can continue my day in a somewhat normal manner but there are days when the stiffness never goes away and every step is a challenge. I can't get down on the floor and play with my daughters because I know it will cause me a lot of pain and will be difficult for me to get back up. I can't run after them and chase them. Everything comes with a set of challenges to overcome. Something that I use to be able to do in 10-15 minutes now takes me around 30-45 minutes on a bad day. I don't say this for pity but in hopes that I reach out and help someone understand what it's like. You won't believe the number of people that just don't get the fact that I can't be magically be fixed with some wonder drug. Yes there are a lot of drugs out there for RA but most of them come with very nasty side effects.

It makes it even harder when you come across someone who doesn't understand. It hurts when you're told well you're young, you should be able to do this. Yes I know I should be able to do this but damned it I can't and it's very frustrating. I've actually had people shake their heads in disagreement when I opt to take the elevator over the stairs. Why anyone would care that I'm taking the elevator over the stairs I don't know. The petty things that people make a big deal about still amaze me. I'm not taking the elevator because I'm lazy I'm taking it because I know if I take the stairs I could end up in so much pain I can't sleep that night. I try not to let it get to me and generally I mentally flip them off and go about my day. They don't realize that I would love to be able to go up and down the stairs without pain. I live in a two story home and have to go up and down the stairs several times a day. If I can avoid the stairs in a building that is not my home then that makes it a little easier for me when I have to go up them at home. I now have all the proper documentation in our military exceptional family member program file (yes that's right the Air Force thinks I'm exceptional because of my RA!...lol) that states we are to be placed in a single level home in base housing. It also has a provision in there that states that the Air Force can not send us anywhere that does not have a Rheumatologist. We could probably push for them to move us into a single level home but we would lose all the space (the single level 3 bedroom homes are a lot smaller) and frankly I'd rather deal with the stairs then to move our stuff again. Not to mention the fact that we have really good neighbors.

It's frustrating when you try to make them understand that you have arthritis but then they inevitably come back and say young lady you are too young to have arthritis. Rheumatoid Arthritis doesn't have an age limit. It strikes the very young, old and in between. I'm 32 years old and was diagnosed with RA 2 years ago. It is more common in women then it is in men. I read somewhere that approximately 70 percent of RA patients are female. I had a Physicians Assistant (PA) tell me that I didn't have RA because I didn't have a negative RA factor. After talking to my Rheumatologist I now know that the PA was wrong and that I should have been referred to a rheumatologist to make that determination. The PA wasn't even remotely close to being qualified to decide if I had RA or not. Not all RA patients have a negative RA factor. The test is not flawless and it's found that around 20% or more of the people with RA have a negative RA factor. Then to top it all off there are people who have a positive RA factor who don't have RA. It's definitely not a flawless test. I worry about the increase in risk for my daughters to develop this disease later in their lives. It's obviously not under my control and it's not my fault but yet I still worry.

I just needed to post about this. I won't hold it against anyone if they don't feel the need to comment. I've hem hawed over posting this but then I came to the conclusion that this is my blog and I can post what I want too...I now have the song It's My Party stuck in my head. I swear the weirdest stuff pops into my head. I write for myself and if people enjoy reading it then it's just a great bonus. I have met some truly wonderful people through my blog. If this helps one person understand that RA is an disease and it's not something that you get because you're getting old or makes some one want to understand what RA does to a person, hell if it makes someone think about anyone with chronic pain in a different light then my post was worth it. Chronic pain is debilitating and it not only effects the person dealing with it but everyone that is close to that person.