This is just an image I found off google, but it could be me right now. One of my many diagnoses is chronic inflammatory demylenating polyneuropathy, or CIDP. Despite being dependent on assistive devices that I don’t mind so much as they allow me to get around, I forgot about the excruciating pain of CIDP. This man is clutching his hand that looks red hot. My hands are only tingling and alternating between that and numb. My feet though, they feel like someone stuck them both in fire ant hills to halfway up calves. The immune globulin therapy I’ve been on a year next week has mostly gotten the nerve pain under control. Unless you have experienced nerve pain, it’s hard to describe. Sometimes I feel lightning bolts in my body. When I exercise, I pay the price of having intense buzzing in my legs that I have joked to a couple friends who were interested in my health experience that my legs have a more active social life than I do as it feels like that constant vibration when text messages come in.
I’ve been in a pretty rapid decline towards a pretty full blown relapse. I figured I could muscle through it and just forget it was happening until I couldn’t.
I have been doing a weekly treatment of hizentra or SubQIG, which means I stick 6 small, but extremely painful needles (for me) into my fat basically. Sometimes I do my inner thighs. Sometimes I do my stomach. It takes about 2 hours and feels like bees stinging me the whole time. I get huge welts that don’t really go away so much. They get smaller and less painful, but my body has New “scars” from treatment that is supposed to help. Last Sunday I just had to be still in my bed as it was all I could manage.
This is what happens to my stomach after infusion. This was the morning after. My flat stomach swells and it hurts! But I enjoy the freedom of doing my infusion at home, myself and have more ice packs than food in my freezer to manage the pain.
This is a brief description of the disease. My specialty pharmacy that delivers my weekly immune globulin supplies called today to schedule my delivery. Very important to be home as you definitely don’t want your thousands of dollars of medical supplies to be stolen off your porch! I wouldn’t be happy and sure the thief wouldn’t be so much either.
I said that I was having an increase in symptoms and could I get an increase and jokingly said, “or could you send an exterminator to get the fire ants out of my bed?” She gasped and said, “that’s what it feels like?” I just kind of casually said, “yeah” as my feet and calves felt unbearable. She immediately transferred me to a pharmacist.
I had no clue what a specialty pharmacy was. I didn’t even have a clue when I started getting my supplies from them except it must be the same as mail order pharmacy as I’m completely fine, right!? Not so much. Specialty pharmacies are designed to be built on a patient centered model for critically ill and people with complex diseases that need extremely expensive biologic medications or medication made from human tissue. My infusion is the healthy immune cells from thousands of plasma donors and all I can say is that it isn’t cheap, except my specialty pharmacy worked miracles for me.
Within 2 1/2 hours the pharmacist had called me back, had already contacted my doctor and said I would not be doing my at home infusion this Sunday. I’m headed to the infusion center for a week of IVIG and we were discussing the complexities of having to take the steroids that go with this that suppress the immune system in a time of COVID and lots of “well, umm, your immune system is going to be affected and right now, well, umm, it’s something to be concerned about in these times”. I reassured her I don’t really go anywhere except the store. I did go to an in person yoga class last night where we were all 10 feet apart in a basement of a building with a new ventilation system and my yoga teacher put on her mask to spray down the floor with who knows what to sanitize it. That class fed my soul. I was looking forward to next week. There won’t be a next week or week after that. I’m staying home with my immune suppressed self. A painful reminder of how it’s not great in good times. It could be deadly to me next week.
I’m managing the reality that next week I will feel terrible. I’m prepping food to distract from the pain. I’m figuring it out. I’m rearranging other appointments. I’m contemplating boarding my dogs as it’s hard to explain what a “loading” dose of IVIG does to me. My CIDP support group is full of people lamenting the dreaded loading dose, which means you get a LOT over multiple days meaning the fatigue becomes overwhelming. Your muscles ache. You get back pain. I always get the worst migraine for days. I shiver like I have a terrible flu. My last loading dose had me laying still for 9 days after and could only look at a screen for a minute without vomiting. I couldn’t turn my head without wanting to scream from the pain. My loading dose before that was 4 years ago and was in the hospital remembering how much it hurt, but they gave me a morphine pump and took care of my every need.
So that’s a little about my experience with just one of my diagnoses. I’m grateful to have a diagnoses for strange neurological symptoms that have intermittently been bothersome for years. I’m grateful my specialty pharmacy took it so seriously as my body is constantly in a state of “strange” and if you know me well enough, I’m the champion of not knowing what a medical emergency or urgency is. I just power through and get it done. Pain or more pain. What’s the difference? It’s just how it is and even as much as it flat out sucks, it’s given me an appreciation for life and a spirit to embrace new things and be a person who I enjoy being navigating health challenge after health challenge and in between I do some standing on my head and scaling trails in the mountains around my home being the best me taking the garbage life can throw at us while simultaneously feeling the miracles I’m granted, whether it’s a pharmacist who said she knows my story well or a couple dogs who come in for a serious snuggle as they know mom isn’t feeling well, or someone I don’t even know offering me rides as her daughter has lupus and knows the infusion drill well.
If you are managing critical, complex, or chronic illness(es), it’s a challenge. It isn’t a big ball of rosy beauty, but I can have hope that in a couple weeks I’ll be back at it even if I also cry about my relapse and the implications of it. I’m staying strongly rooted in the grief and pain and strongly rooted in my joy to stay centered in times that are definitely unprecedented for most of our lives and understanding it adds a complexity to life that has gone beyond anything I ever thought I would experience.
Thanks for letting me ramble as a distraction from the pain. Good thing I have plenty of art supplies, books, and the ability to ponder a lot to attempt to keep me entertained. Sometimes fire ants are overwhelming and just accept they are there and as I wrote to a friend, “if my body didn’t constantly hurt, how would I know I was alive?”
And P.S., just so you know I’m real. This sucks!