When I relapsed about 15 months post HSCT, I was devastated! I had been given a glimpse of health, of freedom from painful cramps and shocking nerves and infusions that made me so very sick and it was amazing! Since then, I have come to terms with my circumstances, that my life will be different because of the disease attacking and hiding inside me.
Life in the past year has been pretty good. My job is great and I love the people I work with. My boys are growing up, they are 5 and 8 now. My husband and I are still each other’s biggest fans. My family is supportive in so many ways. My friends love me fiercely and show me regularly. And my health, is stable.
On Wednesday, I woke up in Maryland at 3:30 AM. I drove by myself this time to the airport when it was still dark very dark out. I flew out of Baltimore at 7:00 and arrived in Chicago at 8.
My first appointment of the day was an EMG & NCV (my favorite...read with extreme sarcasm). My most favorite tech performed the EMG. Vinnie is a wonderful, gentle man who is great at his job. If you ever need an EMG, he’s your man. Next the neurologist came in and performed the NCV. If you’re not familiar with what an NCV is, imagine someone sticking a needle into your muscle and slightly electrocuting you through the needle while you have to make a muscle where the needle is sticking. It’s oh so pleasant. The neurologist reviewed all of my results from prior years to this years and my nerves are no worse than last years. Which in my case is great news. This means that the medicine I’m taking (Subcutaneous Immune Globulin) is keeping my disease progression at bay.
Next was labs. Lots of blood taken. Lots of viles.
After that, I had some time before my next appointments so I hustled over to the LEGO store to see if they had a piece my son had broken last week. They were amazing and found the exact pieces he needed.
I then met up with a fellow HSCT graduate also celebrating her 4 years. She had HSCT to treat Scleroderma and thankfully, her disease progression has been stopped!
Next was meeting with Dr. Balabanov (the neurologist) who examined me and found that I had some reflexes back in my arms. That is a big deal y’all! A symptom from CIDP is the loss of all reflexes. So when a Dr. has tested my knees or elbows or wrists in the past, nothing ever happened. This time, my arms jumped (ever so slightly) but they jumped.
Finally, I ended my day with Dr. Burt and Paula. Dr. Burt introduced himself to me "Hi, I’m Dr. Burt" and I replied "I’m pretty sure I know who you are by now."
He grinned at me and said, "Ha, right, I’ve been meeting lots of new folks today."
We chatted about the last year and my history. How I got shingles and it reactivated my CIDP, he said how sorry he was that I relapsed.
He examined me. He had me walk in a line, on my tippy toes, on my heels, stand with my eyes closed. He tested my strength and noted how very strong I was. I got a picture with him and that was it. Then Paula came in and we chatted about the forms we always have to fill out. She had me perform hand pressure strength tests. I was able to squeeze 76 lbs with my left hand and 83 lbs with my right! A far cry from what I could do 4 years ago. We talked about our kids for a bit, hugged and said goodbye.
I then was in a rat race to get to the airport in time to not miss my 5 o’clock flight home. I didn’t arrive at Midway until 4:10 and I hustled thru TSA as fast as I could. By the time I got thru, it was 4:30 and my flight was boarding. My gate was far away and I knew if I jogged a bit I could make it. So, I held onto my backpack straps and started jogging like a crazy person. People looked at me with crazy glances, some people jumped right in front of me as if I wasn’t even there. But I made it and watched the sunset.
But here’s the thing, 4 years ago, I couldn’t have done that. I couldn’t jog to save my life let alone make a flight in a crowded airport. So, yes, I relapsed and it sucks. But, overall, I’m doing really well and my body is healing in lots of ways that I didn’t expect it to. I’d love for the tingling to go away, for the constant cramps to stop.
I’m living my life the best way I know how despite having an incurable disease that could stop responding to my meds at any time.
I’ve always tried to end these posts with some encouragement, something for you to take with you as you go about your life. Here’s what I continue to learn, that life is hard. We are all dealt different circumstances that we must overcome. Some of us get physically sick. Others of us get mentally sick. Some of us have financial hardships. Others lose their marriages or kids or jobs or pets or security or ‘you fill in the blank’. My point is that we all have things that impact us, that cause us to think "ugh, why me?!" But here’s the kicker, we are not alone in our suffering. Everyone suffers in their own ways. And while it’s easy to look at someone else’s hardships as nothing to be upset about, it’s still their hardship that is flattening them. So I ask, can we begin to change our mindset in how we view others? Can we begin to see the people behind the wheelchair, cane, tears, tantrums, kid at school having a hard time? At the end of it all, at the end of this thing we call life, what do we want to be remembered for? Our incessant need to be right all the time or have the nicest car or our unyielding love for others in showing up and choosing kindness when it’s hard.
This is not the life I thought I’d have. I thought it would look different. But, I can’t change it. These are my cards and I’m going to play the best I can with what I’ve got. Just Keep Swimming.
