Aug 4, 2014

Living With RA or What I Call The You're Body's Kicking Your Ass Daily

I hate having Rheumatoid Arthritis (RA). I try not to whine about it but there are days when all I want to do is whine because it's not fair. I didn't always have this so I remember what things were like for me before RA became part of my life. I sure as hell didn't ask for this and I wouldn't wish this on even my worst enemy. Not that I have any or anything. 

It's a miserable damn disease that causes your body to kick it's own ass. Imagine waking up every morning feeling like someone smashed all your joints while you slept. If you're really lucky in an hour of being up and moving the pain lessens and you can go about your day. If you're unlucky you're joints feel like they're on fire and it hurts so bad to move that you curl up in bed and sleep because you're so exhausted from the flare and in so much pain it's the only thing you can do to keep from crying like a baby. Most of us look fine from the outside. Unless the damage is long term and severe you don't see a lot of outward effects of this disease. I'm luckier then some because mine was caught early and doesn't seem to be as aggressive. 

Life was going great for me until a little over a year ago when my meds stopped working. Sadly I learned the hard way that people with RA have to change their meds every few years because their body gets use to the meds and they stop working. For two wonderful years Enbrel was my miracle drug. It worked so well I forgot about life and pain before it. It had very few bad days and mostly they were do to signification changes in pressure normally like when thunderstorms rolled in. I'm now on medication number 3. Enbrel worked great for 2 years and I tried 6 months of Humira to make my insurance company happy. Lets just say that was a miserable 6 months filled with Prednisone, a lot of weight gain, and pain. Lots of pain and signification weight gain do not go well with each other.  I can't begin to relate just how much I hate low dose Prednisone twice a day. It doesn't hurt my stomach but it it causes weight gain and drowsiness for me.

During this last year I've had a lot of ups and downs. Living with me had to be a nightmare for Shawn and the girls at times. There were days it took everything I had to just to get out of my PJs. I haven't done a lot of knitting either. I blew off friends because I just couldn't muster up enough care to even tell people what was going on with me. When I had good days it was awesome but it just made it even harder to deal with the bad days specially when the bad outweighed the good. Depression and anxiety took over my life for over a year. I was able to push it off for days at a time.

I'm doing better now. I'm still not 100% but I'm trying Cimzia now and hoping this one works for me.  The doctor wants to see me in another 12 weeks to give the meds the chance to do it's thing. If not I'm going to be moved to a different type of biologic med since this is my 3rd anti-TNF. I want to knit more again. I really miss being able to knit every day. I had to finally admit defeat a few months back and slow down because the long knitting sessions were causing my problems.

I'll probably be blogging more about my RA and sewing. I'm getting back into sewing since it hurts my hands and other joints a lot less. 

So if you were one of those friends that I ignore I would love to offer you a heartfelt apology. I should have made more of an effort to stay in contact. If you have RA or have someone you love that RA and want to talk let me know.


  1. Dear Trish-
    You don't know me, except as a friend on Ravelry. However, I wanted to offer encouragement and a little warning. First, remission is a possibility- it doesn't fix the damage already done but it does relieve symptoms and stop further damage as long as it continues. I have a cousin (a double cousin actually) who has had JRA since she was about 6 years old. She was one of my closest friends growing up. She was lucky- her JRA went into remission when she was in high school and it stayed in remission for several years. Those were good years full of life and enthusiasm. Unfortunately, it came back. She started using the new drugs and they helped. About 6 years ago, just before thanksgiving, she started stumbling when she walked and then within three days she was hospitalized and completely paralyzed. What they think happened is that she got an ear infection while she was on the immune suppressing drugs. Because of the medications, the infection was able to travel to her brain stem where she developed encephalitis. The results were devastating. Six years later, she still is not able to move on her own although she has regained some small motor skills and relearned how to talk. I wish I could tell you the specific drug but encephalitis is listed as a possible side effect. So, my encouragement and warning to you is, simply, to pay attention to your body and any changes while you are on these medications. They are so incredibly helpful in relieving the symptoms of RA but they can have awful side effects. I don't know, but I'd like to think it's possible, if we'd paid more attention, we could have prevented it- it seems better than the drug companies considering this an acceptable risk. RA sucks- there is no way around it but my cousin is again in remission and it's possible that you could get there too. Good luck to you. Keep positive as much as possible; there are good possibilities in amongst the frustrating and difficult ones.

    1. Kristin....thanks for the encouragement and so sorry about your cousin. That's one of the things I hate most about being on these meds between the Methotrexate causing possible liver issues and the worry about infections from the biologics its enough to worry me. Its always in the back of mind but I try not to dwell on it. I'm definitely a lot more careful about being out in public special when flu season is in full swing. Keeping a close eye on your health is always a good idea but its a must when you have a compromised immune system.

  2. Poor Bunny!! Come visit and I'll take care of u! Does spinning hurt too? Or we can just drink lots of wine ;)

  3. I sooooo wanna come visit!! Spinning doesn't hurt as much but I need to find a comfy stool. I was actually thinking about getting one of those chairs that you can put those big exercise balls on. They don't make my back hurt. Lots of wine sounds great but it would be a lot better if I could actually drink lots of wine. To many meds that could mess with my liver so one or two drinks a week is my max.