Tuesday, January 31, 2012

When Good News is Hard to Take

Saw my rheumatologist today. We talked about my back pain, stiffness and decreased range of motion. We talked about medications and effects, fatigue and exercise. She sent me downstairs for x-rays of my spine, "just to be sure" and gave me a referral to physical therapy. If nothing abnormal shows up on the x-rays I don't need to see her again until April.
I feel... deflated? Elated? Relieved? I realize it's really good news that my spine is (most likely) not affected by the rheumatoid disease. I am glad to not be adding any new medication and happy that I am actually able to decrease the prednisone by 2.5 mg. So why the hesitation? Why the anxious, unsettled, drowning feeling? Am I just waiting for the other shoe to drop? Do I really wish my spine pain was inflammation due to the disease? Why would anyone wish for that?!? I know, because it's a definite answer. It is a for-sure reason for the horrific pain that has come and gone the past few weeks. I don't want to go to physical therapy to "learn how to manage". I don't want to have another medical facility get to know me by name and expect to see me regularly. I don't have time for that! I just want a quick answer and treatment, and then to get on with my life. But I suppose, this is my life now. I just need to accept the facts and do what I can to learn, cope and live well.
Wish me luck. Or better yet, pray for me to quit being a whiny baby and "just do it".  :-)

Thursday, January 26, 2012

Mostly Disheartened, Slightly Amused

So discouraging... the continuous surprises that come with this dumb disease.

I have been getting awful pain in my upper back, starting about a month ago. I just woke up one morning and it was stiff as a board and sore. Being that this was a couple days before Christmas I didn't want to deal with making an appointment or trying to fit in getting to the doctor's office so I put it off, telling myself it was probably just how I slept or really really sore muscles. It took a few days but I finally healed and put it out of my mind. A week or so later, same damn thing! This time it didn't last for quite as long and I did my best to ignore it. Since then I have had the same pain a couple more times, lasting for a few days each time.

Today I couldn't get out of bed. Well I guess I could, but it felt like my back was breaking. Michael went to work with the promise of coming home soon to take me to the doctor. I argued (of course) and tried to convince him and myself that I would be fine and just needed to rest a little before going to work (disregarding the fact I couldn't turn my head to drive myself). He didn't buy it so after completing his pressing tasks he came home and drove me to the walk-in clinic.

After checking my range of motion and a series of open-ended questions, the doctor said "You know, it really sounds rheumatoidy." Yes, she said rheumatoidy. (I had to suppress my giggles.) Anyhoo, she called over to the rheumatology office to see if my rheum doc wanted anything else done. She came back with instructions to up the prednisone and said my rheumy wanted to see me within two weeks. (Don't worry, I made an appointment for Tuesday. No more trying to ignore this.)

So the verdict is what? I guess the RA is now causing inflammation of my thoracic spine. Or perhaps I just strained it incredibly and it hasn't healed and is mimicking rheumatoid disease symptoms. If it is the RA... I feel pretty cheated. I thought I has years before I had to worry about crippling pain like this. I thought... well, guess I thought wrong. Bummer.

Thursday, January 12, 2012

Still Kickin' It

Don't be alarmed... I'm still here. The last month (geez, it almost has been a WHOLE MONTH!) has been hard, busy and full of exhaustion. Awful brain fog is now one of my constant companions and I just couldn't bring myself to type out any of my feelings. I don't have much left in me from today so I mean to keep this short (haha right?).

Today was one of those "I can't do it-let me stay in bed-I feel like death warmed over" kind of days. I made it to work and muddled through, trying to stay mobile and alert enough to be productive. (I think I managed to be productive but honestly it's all kind of a blur.) Anyway, about halfway through the day we got a surprise visitor... a beloved former co-worker stopped by! CB has been and always will be one of the most inspirational people I've known. Her love of life, people and God radiate all around her and you can't help but smile when she speaks or simply looks at you. She has breast cancer that is thankfully responding well to treatment. Her attitude caused the pivotal moment of my day. In her own words, CB has never been a "pity party person". I wish I could say the same, but sadly tend to do a lot of wallowing, stewing and pitying. Even as I'm putting on a stoic exterior and "braving it", inside I'm feeling sorry for myself, wishing things were different and on occasion, crying "why me?!".
There CB sat, explaining her progress, describing her daily life, talking about how she feels, happy to simply be alive. At one point she said something to the effect of "There are days I wake up, the sun is shining and I'm so happy! Then I think 'oh yeah, I have cancer... oh well!' I mean, what can you do?". That statement... the acknowledgement that she has a "terminal illness" and chooses to get out of bed and have a good day anyway... that is what caught me in the heart. "Hell, why can't I do that?" was my first thought. Then I remembered... I can! It's all a choice... the mental part anyway, not necessarily the physical stuff. But why must we let our physical state dictate our attitude? There is always something to be thankful for. Sometimes you have to look under rocks, behind clouds and in valleys to find it, but there's always something.

I have an incurable autoimmune disease that often makes me feel like... for lack of a better word, CRAP. I also have about a billion things to be thankful for and could easily name a hundred of them if you wanted me to. (Though I may have to write them down so I remember. Brain fog you know... it's killer.)  ;-)