2011 March: David was born.
2011 December: I could barely walk.
2012 February: I was diagnosed with an extremely rare neurological disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) with no known cure.
2012-2015: I underwent various forms of treatment none of which cured me all of which made me feel horrible and more sick than ever.
2014 December: I decided to apply to a clinical trial in Chicago and was accepted!
2015 June: I underwent HSCT. Which involved high dose chemo and my own stem cells. Basically, we rebooted my immune system. I went into remission almost immediately.
2016 August: I developed a horrible case of shingles.
2016 December: we scheduled an emergency appointment in Chicago where I was diagnosed as having relapsed from the shingles. At that point I had difficulty walking, muscle weakness, my feet were completely numb, my legs felt like I was constantly being electrocuted and I had muscle cramps all over. We began treatment immediately. I’ve been back on dmds (disease modifying drugs) since December 2016.
Summary of this weeks trip. I’ve improved since last year. Nerves are healing as I suspected.
We started out the day at the ridiculous hour of 4:00 AM. We flew out of Baltimore at 8:00.
My first appointment of the day began at 10:30 with an EMG & NCV. This test is still as painful as ever and I hate having it done. The only good news from it was that the Dr. compared my results to last years and my nerves have significantly improved!
I asked about at what point do we decide which is worse for me the medicine I’m currently taking or doing HSCT again. Dr. Burt said, "we aren’t there yet, you’ll know, I’ll know and we will decide when that time comes".
So, we keep doing what we are doing, 8 needles a week, 200 ml of immune globulin injected into my stomach.
At some point, I’ll taper down my meds and see if I can take less...but I don’t see that happening soon.
My hand strength was good. I could squeeze 75-80 lbs. At my weakest, I could only squeeze 30 lbs.
I had to answer lots of questionnaires about how I’m doing. The only things I couldn’t answer yes to was walking long distances, standing for hours or running.
I met with a new neurologist today, Dr. Balabanov. He usually sees the MS patients but is now also seeing us CIDPers. He examined me. I have no reflexes still (a common side effect from CIDP). He tested my strength and feeling. Just like every other neurological exam I’ve had, he used a tuning fork on various points on my body and I had to tell him when I stopped feeling it buzz. This is the best I’ve ever done. He also took a needle and pin pricked various places on my body (all while my eyes are closed). I felt every single pin prick where in exams past, I often wouldn’t feel anything. All in all, I am doing well. Besides my lack of reflexes, I was exhibiting no visually physical symptoms of CIDP. That is huge y’all! HUGE!!!
Texting with a friend earlier she told me "I hate CIDP! But you are an inspiring warrior."
And to be completely honest, I also hate it.
But, as I told Paula (my nurse) I had to mourn the loss of it all...the life I thought I’d have but don’t, the things I can’t do that I wish I could, the time taken away from life and my family to do my medicine twice a week. Mental health is a big deal when you’re suffering from a chronic illness. I told my friend that there were lots of mental health questions I had to answer. Her response was encouraging:
"...you’re journey to health has never been just physical. It’s a good perspective shifter. For me and everyone else.
Liiiiike she’s doing life on top of all the shitty chaos of a horrific disease."
So, with that, what I can control is only live in the now with what I know. And what I know is that despite having this awful disease, I am thankful for the perspective I have gained. That the little things that usually irritate aren’t that big of a deal in the scheme of things. We are making memories with our boys all the while knowing, my time is limited and we don’t know when the end date will be (do any of us though?). Being able to live life fully present is a gift I hope everyone gets to have without having to go through a tragic event like me.
Happy 3 Years to me. Now, I will eat cake.
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