Aches & Pains

Close friends and family members are always asking me how I'm feeling, how I'm doing since my arthritis diagnosis. I so appreciate them asking how I feel, and I tend to tell them honestly what being in this body feels like on a day-to-day basis - which is: it's difficult. It's a hard question to answer really, because each day is different, but mostly it sucks! I'm still working with my rheumatologist to find the right medication for me, and my body is quickly getting worse. Joints continue to hurt, and this "flare" seems to never end. I'm finding more and more things are affected by my aches, pains, swelling, and stiffness. Yet, when people ask me how I'm doing - I tend to hesitate on how much to tell. It's hard to know if they're asking to be nice or asking because they genuinely want to know what is going on or how I'm REALLY feeling. I'm not trying to say that they are disingenuous when asking, but you know what I mean, right? Someone says, "How are you?" and the polite response is, "I'm good, you?" or some variation of that. Staff members at the school I now substitute at (but used to work at for the past 8 years) will ask how I am, and I never know how much they really want to hear. They are my friends; they care about me; they would listen. But... they are also working, ready for a typical "Fine, thanks, you?" answer.

And, then, there's Sam. I feel like I complain to him on a daily basis. Sometimes I'm filling him in just so he knows what's going on with me or what new ailments have popped up. Sometimes I just need him to let me bellyache about it. Sometimes it helps to have a second person think these symptoms through with me so when I document or talk to the doctor, he can help explain or help me remember. Mostly, I talk to him at night when I'm dreading going to bed because I fear the stiffness and pain that awaits me the following morning. He's sympathetic and wishes he could do something to help. What's helpful is that he listens. What's helpful is that he doesn't complain about my complaining. What's helpful is that he is gentle and understanding.

Some nights, I go to bed with a list of complaints in my head and don't want to dish it all out onto Sam. Sometimes it seems unfair to have him have to hear the same things over and over again. So, I thought I'd write it down and be done with it! I just have to get it out there. So, if you really want to know how I'm doing... read on:

You should understand that most of the complaints I have are due to the fact that my knee, my jaw, both wrists, both elbows, and on occasion my neck and a few toes cause me pain. Some of these joints are visibly swollen (knee), some of them are not visibly swollen but the doctor can tell they are (toes), all are stiff, and all are achy. So, what effect does that have on my daily life?

• Drying my hair is difficult. Reaching around to the back of my head, bringing the brush all the way down to the ends of my hair, holding the dryer, using a flat-iron . . . it's all frustrating. 
• Chewing can hurt, opening my mouth enough to get certain foods in can hurt
• Stairs have to be taken one-by-one (going up or down), and even a curb is a challenge on some days
• Scratching a hard-to-reach itch on my back is impossible.
• Turning my body in bed wakes me up completely (and Sam usually) - it mostly hurts my wrists, but my knee and elbows too
• Putting my purse on my shoulder, adjusting my clothing/bra on my shoulders is difficult unless I use the opposite hand (if I use the same side hand, the elbow won't bend enough to reach the shoulder)
• Getting dressed is not as easy as it used to be - putting shoes and socks on and even off can be difficult
• Let's get really personal for a second... think of sitting on the toilet and finishing your business only to have to use your wrist at an acute angle to clean yourself. Not so easy with a bum wrist. (But yes, the job does get done!)
• Talking on the phone can hurt my wrists and elbows unless I'm hands-free/speaker-phone
• Standing up or walking after a long sit (like in the car, at a restaurant, at a doctor's office, at the movie theater) takes a bit of wait time before I can really move
• Shaking someone's hand hurts if they shake it with force. . . kind of embarrassing to wince as I meet a new person
• Taking a casserole dish out of the oven is a challenge because it's hard on the wrists (you need more strength to grasp around an oven mitt/potholder)
• Taking dishes out of the dishwasher - I have overestimated my wrist strength and dropped a plate once and on another occasion a drinking glass
• Wrestling Banner on the changing table - ugh!
• When it gets cold outside or when temperatures drop, I feel flu-like. I get achy all over, feel very weak, and have the chills.  
• I've noticed I can't turn my wrist all the way to wave to students in the hallway... it just looks kind of awkward.
• My elbows won't stretch out all the way (or bend all the way) anymore. Reaching for something that someone is handing me can be hard - and it looks as if I'm not really trying hard to "do my share" of the reaching. I once read an article about a woman feeling embarrassed about this same issue at the drive-thru because she couldn't hand over her cash at the window to actually reach the cashier. The cashier kind of rolled his eyes at her as if she were purposefully being difficult.
• Driving when my wrists hurt is another challenge. I wouldn't say it's dangerous because I CAN steer, it just hurts a bit. The worst is probably backing out because that's when you are most likely to be rotating your hands/wrists at a faster pace or at least in different directions in a short period of time.

Those are just a few of the ways this arthritis is affecting my daily life. I am just figuring out this whole disease - and I had no idea how much it would really impact me so fast. I was so glad when the doctor had a name for what I was feeling - but now I so wish this is NOT what we were dealing with. I've learned that trying to find a good medication that works well for an RA patient is like finding a needle in a haystack. I've been told by a good friend with RA that the meds I'm on right now will most likely not work because these low-level NSAIDs are like "spitting on a fire."  But my doctors won't allow me to try harder drugs because I'm a young(ish) woman who wants more children sooner rather than later, so those drugs are not an option right now. Even the drugs I'm on now will have to be stopped if I do become pregnant. It's a bitch of an illness, and I'm sick of all the aches and pains. Emotionally, I'm doing okay - just taking it all in, trying to learn as much as I can, hoping for relief soon, and doing my best to not complain TOO much. I try to look at the bright side - I only have a FEW joints that are hurting compared to many RA patients with every joint hurting (even ones most of us don't even know we have); I don't have any obvious deformities; I haven't been dealing with this all my life. I know I'm "lucky" compared to so many other RA patients, and I know it could be a lot worse than arthritis. But, I still feel like a prisoner in this body that is betraying me. And, when you ask me how I'm doing - I'll probably still say "I'm okay," even if I'm not. I'll still thank you for asking me, and I will ask you how you are doing. And... I will genuinely want to know - because after all, you just read this whole long post, and you deserve to bitch a little, too! :)