Friday, August 10, 2012

What's Wrong With Me?

Our lilac bush was budding and the sound of song birds perched high in our sycamore tree chirping filled the air. Wiggly pink earthworms found warmth on the driveway after the nights rain. Small wonders seem more apparent as I moved slower. In my not so distant memory, I recall stretching my legs at a faster pace and moving quicker. While I'm not sure I'll move this way anytime soon, if ever, I recall it easily. ~ Spring 2012

The day before Valentines Day this year I was officially diagnosed with Undifferentiated Connective Tissue Disease. UCTD for short.
Most people, including me, had never heard of this. There are a handful of connective tissue diseases and when your body hasn't quite settled into enough symptoms to definitively diagnose which one, this is what they call it. My Uncle died last fall from one of these Connective Tissue Diseases, Systemic Scleroderma. 
My last conversation with him, he reminded me to tell my doctors about the strong history of these autoimmune diseases on our side of the family. His strong faith and acceptance left an indelible legacy.

Blood work sent to Mayo Clinic held the answers for me. My diagnosis took months to obtain. Blood tests, nerve exams, three neurologists, two MRI's of my brain and spinal cord and eliminating an MS diagnosis brought this to fruition. When you're a diabetic oftentimes that becomes the 'go to' answer. I knew there was something very amiss inside me. A huge amount of patience was required - not my strong suit mind you. 
I began not feeling quite right last July in the heat of summer. Bright lights, heat, sun, loud noises and odd nerve pain was adversely affecting me. We changed lightbulbs and lighting in our home and studio. I'd dimmed the light on my computer screen. I'd lost strength down the right side of my body. Most noticeably in my leg. I began using a cane. Oftentimes I've had a hard time articulating words or thoughts. Confusion over simple things comes easily and makes us both laugh. 
And in that laughter comes some sort of odd acceptance. 
The alternative is to cry, and I've done plenty of that. This along with bouts of depression. Yes, someone who lives in a purple house really can be depressed! Sometimes daunting when mixed with pain management. Pain in turn adversely affects blood chemistry making my Type 1 diabetes a greater challenge.

I believe that's where we are with this right now. We waited months to hear what was wrong and now we know. Jon's been my rock through all of this. He quietly senses what I need and makes adjustments. 
Memory issues have brought about small yellow post it notes around our home reminding me of things. Seems silly, but necessary. Eight weeks of physical therapy showed mixed results.
What has happened seems humbling. An internally quieting sensation. Not necessarily bad, but a game changer. Then again, life is a series of changes. 
I'm not sure if I'm getting better or worse. More tests will indicate where this is going. The medication I'm on is treating me as if this is already Lupus, so it's easier to say that is what I have. 
I can remember how it felt to have stamina, walk faster and think clearly. One of the hardest things to do for me is to walk into a room of people who I haven't seen in a while. Or to see people who don't know what's wrong with me. People have questions. Some ask, some don't. 
I wish I had more answers.

My tendency is to fight. I watched my Mom do that as she battled cancer at a very young age. She never gave up. She had two kids. She wanted to see us graduate from high school. 
She didn't get to do that. 
But I watched her maneuver a daunting battle. I wonder how much energy she used to do this. Mine is nothing compared to what she encountered. 
I'm wrestling with her memory of fight and my reality of accepting so as to not waste energy.
I'm tired all the time.
I've come to learn tiredness is it's own disease.
It takes time from you. Trying to rearrange your life around that takes time.
I'm a firm believer that everything happens for a reason. 

Small things feel big and big things seem small as perspective shifts. 
Perhaps this is a gift I've not fully realized.
I've got the most amazing support of family and friends.
I'm blessed - things could be worse.