A Blessing- Six More Months of Winter

disability

Last week was a strange week. It felt a little bit like groundhog day–with a prediction of six more months of winter.

About six months ago, I started infusions of IVIG for the treatment of Autoimmune Autonomic Ganglionopathy. Better today than I have been in the past three years, I would say the treatments are working. (Speaking of three years, Saturday marked year three of my sickness). Unfortunately, my improvements come at a price: the IVIG causes me to be very sick. Sometimes the reactions aren’t so bad, but other (most) times, I have a severe inflammatory reaction of the lining of the brain and spinal cord, known as aseptic meningitis. This causes out-of-this-world headaches, neck pain, nausea, visual changes, and pretty much the inability to do anything but lay in the fetal position. I take steroids to counteract this reaction, but unfortunately, if I take them, they also counteract the benefits of the infusion itself.

Needless to say, these past six months have been some of the worst days and some of the best days I’ve had in the last three years. Pain and misery from the infusions on one hand, and on the other, I’ve been able to do more than I ever have and I’m off the majority of medications I was on (which is a ridiculous thing to say if you know how many I used to have to take).

Well, last week I had my six month followup appointment–the appointment after the six months of treatment where the doctor is supposed to declare you better and send you on your way. Only, that didn’t happen.

I found I would be starting six more months of IVIG treatments (which start tomorrow–giving meaning to the phrase ‘no rest for the weary’).

Six more months of winter.

But I learned something this week.

My Physician’s Assistant was telling me about another patient much like me. Same age, similar diagnosis. She was even on a feeding tube after the disease wrecked havoc on her GI system. After six months of IVIG, she was almost completely better. But, just this week, they found out that her insurance is dropping the coverage of IVIG stating that it is “experimental” and there isn’t enough research to prove the long term benefits. I’m thinking that is has more to do with the fact that it costs $30,000 a month–but thats just a guess. My PA looked at the floor and paused as if the weight of what she was about to tell me was too difficult to bear. She looked back up and said, “I have to go tell her she can’t get IVIG anymore.”

Something shifted in me in that moment. I learned I need to be more thankful. I could be her. I could be the one that has to give up the treatment that is helping me get better. Back on a feeding tube. Back in bed. Taking a turn for the worse.

But I’m not. And I am so thankful.

I’ve been reading a book recently by Shauna Niequist called Cold Tangerines. She has a way with words that I love. She writes:

“Nothing good comes easily. You have to lose things you thought you loved, give up things you thought you needed. You have to get over yourself, beyond your past, out from under the weight of your future. The good stuff never comes when things are easy. It comes when things are all heavily weighted down like moving trucks. It comes just when you think it never will, like a shimmering Las Vegas rising up out of the dry desert, sparkling and humming with energy, a blessing that rose up out of a bone-dry, dusty curse.”

IVIG may be a “bone-dry, dusty curse”, but it is a blessing.

3 Comments on “A Blessing- Six More Months of Winter

  1. I admire your willingness to share this with others. Keeping you in my prayers!

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