Arth-freakin'-ritis

If you haven't kept up with the "knee issue" posts, feel free to go back and reread them, but extremely long story extremely short: I have arthritis. My rheumatologist isn't sure what kind it is just yet, and we may never know for sure, but it's either rheumatoid or psoriatic. My internist agrees, and she empathized with what I must be going through at the beginning of a diagnosis. She totally hit the nail on the head - explaining how frustrating it must be to have to go back and forth to the pharmacy to change medications because the other one(s) were not working, to keep paying a copay for them, to keep getting my hopes up that one med will work but then it doesn't, to not have all the answers, etc. What she didn't elaborate on was the pain I am feeling. So, I feel the need to just vent and get it out  tonight.

I feel like a prisoner in this body of mine. I feel like I am trapped in this tight, painful, sore, achy body with random parts that don't want to move, be used, be stretched, or turn certain directions. I'm very optimistic that we will find a medication that works, but right now I am on anti-inflammatory number 3, and I'm still not finding much relief. I was allergic to the first one, the second one didn't work, and I'm not feeling much benefit from this one. There are more options, and we are not at the end of the line by any means, but I'm just so frustrated with my body.

Sleeping is rough. I was always a good sleeper, and I still am. The problem comes in when I want to change positions or turn over. The moment I move, at all, I'm in pain. To pull my knee up, to turn my arm a different way, to rearrange how my wrist is situated under my head - it all just wakes me up and causes involuntary facial expressions as I wince at the tightness and painfulness of my body. Turning over causes both Sam and I to wake up, as it is a long, tedious process.

Waking up in the morning is the worst, I think. My body feels so sore and stiff. My right wrist (and since yesterday, my left wrist) and my left shoulder and elbow don't seem to want to cooperate. I feel like a ton of bricks has been added to my body each morning as I slowly will the strength to walk to Banner's room when I hear him cry out in the morning - and then muster even more strength and stamina to lift him out of his crib only to fight him on the changing table. Most mornings, my right wrist wants nothing to do with this fight, and I usually let Banner win for a bit until he's a little less inquisitive and I can distract him enough to try to lay still so I can change his full, wet diaper. While Sam is really helpful, I don't want to depend on him or have him bear the brunt of my body's weaknesses. Many mornings, anyway, he's already out the door to a meeting or event (which is GREAT for his business!). I absolutely HATE that the mere lifting of my not-even-25-pound toddler causes me such pain - or even anxiety. I have learned how to compensate most of the day - but the morning is rough. Even my right knee (which is still very swollen and stiff) gets pissed at me in the morning when I try to sit on the toilet - getting up and down from it causes me to feel like one very.OLD.lady! Oh, and then there's the left side of my jaw, which pops all day now. It's painful to even eat much of anything. Even wearing my night guard which I have had for years to prevent TMJ and grinding teeth has not helped alleviate the pain I'm feeling. Again, this only adds to the complete and utter feeling of being trapped in this body. It's like every morning my young, internal side is yelling, "LET ME OUT OF HERE!" I just want to be able to DO! (As I once read on an RA blog: "The pain is horrible, but the frustration is worse." Oh, I couldn't have said it better!)

Throughout the day, like I said before, I have learned to compensate. I lift Banner from the floor by leaning over and having him hug into me, so I lift with both arms underneath his armpits rather than using my hands underneath him. That prevents the pain in my wrist. I've learned to just let some of the small things go - which is probably a good thing anyway - like picking up his dropped/thrown sippy cup on the floor throughout a meal. I rely more on the vacuum/electronic broom more often - whereas I would usually just get down and collect all the spilled/dropped/thrown food with my hands and a wet paper towel. And, I'm slowly learning how to get up and down off the floor faster, although that is still a huge task when I'm trying to balance my weight and avoid my "bad" joints which are sprinkled on both sides of the body. I can't put weight on my right wrist, my left elbow, my right knee, and certain toes - so it's a challenge, but I'm trying! I just worry about the opposite areas compensating for my weak ones. In fact, like I mentioned earlier, my left wrist just started hurting - as if it's been a little bit jealous of the attention my right wrist was getting and needed to stir up trouble to get on my radar!

Ironically, I've needed Sam's help opening my medicine bottle first thing in the morning. I can't get enough strength behind my wrist to move and twist the bottle cap. The feelings that come along with this are awful: feeling inadequate, weak, dependent. I spoke with a friend (and former colleague) of mine who has rheumatoid arthritis, and it was so nice to hear that I'm not alone in these feelings. She was also diagnosed after her first child was born. We talked about how isolating having RA can be and how - even though our husbands are extremely understanding and empathic - they still won't ever really feel what we are feeling. It's hard to feel like an old woman at such young ages, and it's hard to feel weak or incapable when you really WANT to move, help, lift, etc.

I have a disease that no one can see or tell I have just by looking at me. No one can judge how much pain or discomfort I'm feeling, and the only way they would even possibly know or start to imagine is if I tell them. But, I'm not really one to go around telling people out of the blue that I have a disease. Honestly, I guess I just figured no one cares. But, with an invisible disease causing me pain, stiffness, achy-ness, and swelling, it's hard to feel normal.

There are times when I'm really hurting and just want everyone in the room to know. There have been times when I'm subbing and want the kids to walk themselves to PE so that I don't have to suffer the walk down the hallway. There have been times when I'm at gymnastics with a distracted Banner, and I could care less if he's doing what he's supposed to or not because I'm too sore to keep chasing after him. I'm finding it more and more difficult to write - so when I've gone to the doctor's office and had to sign-in or fill out paperwork, I hate holding the pen and trying to write well. (Typing doesn't hurt at all; holding a pen and grasping it as I move my wrist does hurt.) There have been times when I appear lazy or weak - like trying to move boxes to pack up after a garage sale, and boxes just slip right out of my grip, even a light box filled with stuffed animals. There have been times I just feel flu-like - weak and feverish (which I've heard is normal for RA patients), and I just have to suck it up and get over it. As the mother of a toddler, I don't get much choice, and I certainly don't get any sick days.

Some days are better than others, and some tasks are easier than others. Usually, by the end of the day, I might feel a little better and looser, only to face the next morning with a brand new start with pain and stiffness. It kind of makes me dread bedtime - knowing that I'll wake up the next day hurting again. Like I said before, though, I'm really hoping to find a medication that makes all of this history! I can't wait to have my body back to use as it is supposed to be used! I asked my friend if I will ever be able to run and chase and crawl with Banner without feeling this pain. I was relieved to hear that YES, I will get there! Once we find the right medication, I will be a better mommy to my boy, and I won't feel so run down. That, of course, was music to my ears - and I am holding on to that thought and to that image!
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Note: I've added three new blogs about living with RA to my Blog Roll (on the right hand side of this page). Feel free to look around it for more information from these writers who deal with RA everyday. Some of what they say scares me because it's way worse than mine and I hope I am not headed in that direction - but most of it lets me know how NOT alone I am in my feelings and frustrations.)