Saturday, June 14, 2014

A New Day and the Sun is Shining

Since my last post, things have changed quite rapidly in my health. I believe that because I finally faced my fears and shared transparently in this blog, many have been praying for me. For those of you faithful friends, I thank you more than I can say. I had a reassessment of my muscle strength last week and I have improved at 23%. Let me add that when I first began seeing this doctor, some of my muscles were only working at 16-25%. My doctor said that at first assessment, he wants 25-35% improvement, but for the condition that I was in, 23% is really good.

In addition to this, my lower back pain has subsided enough that I am being weaned off the back brace. As I type this now, I am free of it and I credit your prayers for this. I still wear it a little each day, but I am amazed that I can drive and sit without it and without the excruciating pain of doing so.

Side note: A friend of mine was recently diagnosed with fibromyalgia. To make matters worse, she overheard her boss say that fibromyalgia is not a real condition, but is in the head. I want to smack people who say this, especially since the ones who say this are typically the ones with no medical education. My new doctor, the one who has helped me so much, did his dissertation on fibromyalgia. I'd like these ignorant people to tell him it isn't a real condition. I'd like these people to feel my physical pain and to live with the impossible, debilitating fatigue that has plagued me these last years for just one day. One day and they would change their tunes.

While there is no way to "test for" fibromyalgia, it is assumed that the physical injury I sustained in my lower back is what produced this enigmatic condition in me - and people, it is NOT in my head! Anyone who knows me knows that I am not one to be idle. I was a very active woman, one who has worked one or two jobs while attending college and getting A's and volunteering and having an active social life. I danced, I ran, I worked out. Being laid up in bed is not my idea of a good time, especially when the fatigue has even kept me from reading my beloved books. Again, anyone who knows me knows if I'm not out and about, my nose is in a book, but sometimes, even books are kept from me because the fibro-fog makes it impossible to focus.

Anyway, back to the good news...

So then I had a follow-up with my PCP. He is overseeing the medical leave and has been my doctor since before the back injury. He said, "In three years, this is the most positive appointment we've had." I realized then that he has never seen me in any other mood than miserable in three years. Sad, miserable, crying - this is all he has known of me. So many tests and exams and drugs and doctor referrals... But on Tuesday, he was smiling, I was smiling... 

AND he is allowing me to go back to work part-time, two four-hour shifts a week! I went straight to work and let my boss know. There really isn't anything he could do, however, since my position has been filled, but he sent me to his boss and that was encouraging because his boss is the pastor who has walked with me through this whole ordeal. He has helped me in so many ways over the months and he told me, "You have made my day." He was smiling, I was smiling...

He said he will check with our department heads to see if there are any gaps I can fill for eight hours a week. All empty positions were eliminated due to budget cuts, but no matter what the outcome, I am trusting God. I haven't been paid in over three months because one UPMC office has held up my disability claim. I won't get into the ridiculousness of it all because my feelings about the incompetence of UPMC will have me flying through the roof, so let me just share that I have instead learned to lean on God and trust in Him and His provision. Until this month, all my bills have been paid, but trusting in Him also includes whether or not a position is found for me at my current/previous job or whether God has something else for me. I have only been praying about being obedient to Him and doing His Will, not Kathy's will. I still think He has some stuff for me to learn about taking it easy because I was doing so much on Tuesday and Wednesday that I couldn't get out of bed on Thursday and most of Friday. The hurricane weather those two days didn't help, I'm sure, but I know I still have a tendency to overdue it, especially on the days I feel good and hopeful. Yesterday, I was depressed about it, about the debilitating fatigue hitting me again. But today, today is a new day, and the sun is shining.

Thursday, May 22, 2014

My Bed, My Brace, & My Burden

There are many days I rarely leave my bed. In the midst of the good and the bad, it has become my place - my place of peace, my place of pity; the place I want to be most on the good days and least on the bad. I begrudge my bed when I have no choice but to be here and delight in it when I am able to choose it of my own cognition.

On days like today, it is with apathy that I am here typing. My body is as it always is, sluggish and thick, and I fantasize there is someone who will soon bring me coffee. But there is no one so I pop a couple Excedrin with the bottled water on my nightstand knowing the caffeine injection will shortly give me a gust. Then will I be able to rise from my bed and hobble my way down the stairs to the coffee pot or the Klondikes or the new scenery. What I want most is to shower, but it is too much too soon and so I sit in my stink until my body gives me the okay to exert the energy a shower requires.

For too long, I can't sit without my brace. As I tried exercising without a therapist and tried rinsing out my tub without a clue, I sat last Thursday without my brace. Feeling strong, feeling the pain scale of nine reduced to a five, I wanted to be ... me. The me I once was, active, strong, but the brace that was such a blessing and brought me such joy is now a noose around my neck; a monkey on my back, and I spent three days back up the scale at nine.

I am impatient. I want to be free of it. I want to be free of this body that is such a contradiction to my mind. I want to run and dance and walk with grace. I want to speak my mind at the time I want to speak it, to free the imprisoned words and memories held without ransom behind some invisible shroud. I want my friends to remember who I am, to remember I exist, or I want to make new ones in a world I haven't seen for awhile. I want to work and play and write and learn. I want to care about something, and I really, really want to take a shower.