image found here: http://medical-dictionary.thefreedictionary.com/sarcoidosis
We are not sure why, we have a few theories as to why my fingers are starting to “go”. It started a year and a half ago. I get cysts as a side effect of the sarcoidosis. I got one in my right hand, on the joint in the pinkie. A plastic surgeon injected it with kenalog (a steroid), and sent me on my way. Only the pinky got worse. It started to bend and be insanely painful. It looks like I have been playing piano for 50 years when I am only 38. (though you didn’t hear the age from me 😛 )
October of 2015 I got an mri, and I saw a different rheumatologist because mine wasn’t available. She sent me to a hand surgeon who said, it’s arthritis, go see your rheumatologist. Meanwhile up in plastic surgery they are denying that perhaps the kenalog caused the arthritis (if indeed that is what it is). Because really, who gets arthritis in just their pinky? Another mri was ordered by my main rheumatologist. He also did blood work to test for inflammation. I show no inflammation at all, yet my pinky is seriously inflamed and the bone is thickening. In the 5 weeks since the initial meeting to the mri and after, the finger next to my pinky is starting to show the same signs.
What is going on? Is it related to the sarcoidosis? Is it related to the hemochromatosis? Is this another untied side effect, like the cysts originally. Clogged salivary ducts, hair loss, swollen lymph nodes, runny eye, I could go on. As I go down this journey of slowly losing the ability to use my right hand, I am glad that I am ambidextrous. That I have worked hard to make sure that both hands are capable. Though I admit that I have been lax with the left handed writing.
Clearly there are people that have it worse, I have always lived by that motto and I believe this is where my strength has come from in the face of so much loss from an early age. It is my desire to figure out why this is happening to me and how I can go about fixing it. I have been working hard at fixing me. I am weaning off klonopin, I am adding nourishing infusions, lemon balm and valerian root to my diet to help with stress, anxiety and sleep. I have been slammed with agoraphobia, panic attacks, dizziness and nausea and all I can think is the finish line is so close.
As I go through the unrelated surgery at the end of the month, and the meetings and discussions surrounding the use of my fingers, which the pinky will permanently be in a crooked state, I know that I am going to come out on the other side wiser, healthier, happier. With all the technology and science we have today, with all the amazing things they are able to do to help us live a healthier, happier, active lifestyle, it amazes me that there is so much of the “little things” that they have not or cannot tackle. But I have a good rheumatologist on my side who not only accepts my use of an herbalist, but works alongside ideas that I kick by him. In a very rare instance, I have a good one.
I have been writing letters to my friends while I still have my hand to work. I didn’t expect to lose my ability to use my hand so young. But this is life, and you go with the flow, you appreciate what you have and you look to your children and fight. Because this is life and we are all living it.
Love and Peace