It’s been a minute.
I have thought of this blog so many times since December and wanted to place my fingers on these keys and write. I’m not entirely sure what happened that led me away from blogging but I find myself in a place where I want it back.
The Calmare machine didn’t work.
I really thought I would be ok if it didn’t work and certainly had given myself a million pep talks that it would be ok if it didn’t. Foolishly I still brought leggings hoping I could finally wear them and had several fantasies of actually being able to walk to the car when we finally left after the 2 weeks. Unfortunately that just wasn’t meant to be.
The technology is super interesting and I know many people have better reactions than I did, it just seemed to mainly flare me up more. I’m not sure if some of that is centered around being touched much more than I am used to as theres lots of electrode placement and then moving the electrodes around to “chase the pain”. There were a few days the first week where they could get my pain from an 8 to a 6 but it would only be in one toe and only last 30 minutes. By the 2nd week it had stopped working and I was just flared up constantly. It was recommended that I go see a dr in NJ who has a Calmare machine who deals with severe CRPS patients (which I guess is what I am at this point) but I just couldn’t sign on to spending several thousands of dollars on a machine that so far really didn’t give me what it “promised”.
When I came home I was struck with such immense depression. It has been hard to see through this fog that has set in. I thought I could protect my heart from being broken if it didn’t work but I guess Im just not that strong.
Soooooo what next?
Well my pain dr and I decided that I needed to give ketamine infusions a go. Yes ketamine…like the drug they use in vet offices and that people use in clubs. Ketamine in the past 10 years has been found to help neurological pain like mine because of how it works on our NDMA receptors. Its become a hot new treatment in the world of CRPS and I’ve found enough people who say its been their saving grace.
March 29th I will be admitted to University of Virginia Hospital for 5 days to have large doses of ketamine run through 24/7. I am nervous for a few reasons. The biggest concern is this kind of my last resort. I have exhausted so many options over the past 4.5 years and I’m kind of at the end of the line. This doesn’t mean that new things won’t be created in the future but it is honestly hard to resign myself to being in this kind of intense pain and thus being disabled for the rest of my life possibly.
Most people probably don’t know how sick I am and I honestly have tried very hard to write about it less. I feel shame about it and I worry people think I am making it seem worse than it is. Had I not been through this specific experience Im not sure I could comprehend the weird ways pain makes you change your life. I have had to get off most of my pain meds to prepare my body for the ketamine and its been really rough, I am in so much more pain all the time.
I can no longer wear shoes most days, wearing them is just excruciating. This means I can’t leave the house very much as most places aren’t cool with people not wearing shoes even if Im in the wheelchair. Ive lost the ability to wear most pants. Thankfully I can still rock sweatpants/loose yoga pants (no leggings and no jeans) and I am so glad skirt and dress weather is almost upon us. My leg and foot are constantly swollen and purple if I am not laying down. I lay in bed almost the entire day and have been leaving the house maybe every two weeks unless theres a dr appointment I have to attend (trying to make myself leave more). My pain is at a 7-8.5 every day and sometimes hits a 9.5. Some nights I don’t sleep because the pain is too high.
I recently found out that the Lyme Disease not only damaged the small fiber nerves in my legs/hands/scalp but did a real number on my vagus nerve so my stomach is partially paralyzed. Its called Gastroparesis and its why I have been sick to my stomach for almost 4 years straight. Its a relief to have an answer as this issue has been almost as challenging as my pain. Imagine being nauseous for years and surviving off saltines and rice chex for months with periods of time where you throw up over and over for no reason day after day. To begin to fight this I have to change how I eat and I will be eating in a way that is completely opposite from how we are told to eat. No more raw veggies and fruits, no high fiber, no more popcorn/nuts, nothing with lots of fat. Anything that is hard to digest will just sit in my stomach.
It of course doesn’t have a cure (my luck haha!). If it gets worse I could possibly need a feeding tube so I have got to take this seriously and try to get it in a better place. Im so freaking grateful to finally have an answer as I felt like I was going insane trying to figure out why I was always so sick to my stomach.
I’m lonely. I’m scared. I’m facing a future where maybe I won’t ever be well. It’s a lot to swallow and I’d be lying if some days I don’t feel really really hopeless. I feel like I have been fighting so hard for so long to be well and maybe I’m just not meant to win this fight. I used to think if I could just get the Lyme into remission that the CRPS would get better and I would once again have the body I had when I was 27 and healthy.
Now that I know how much damage the Lyme did and the CRPS has gotten worse than I ever imagined I just am unsure that I will ever have the healthy body I once had. Its kind of like coming home from war or some kind of traumatic event, you just can’t be the person you were before. I don’t know. Some days I am ok and some days I’m really really not. Some days I still feel like Genevieve and some days I don’t. I know this is where I am supposed to be and that the universe knows what it is doing. It just is scary to not know what will happen, if I will ever have a body that doesn’t hurt all the time, if I will ever walk and work again.
Last night I dreamed I was running. It was so beautiful. I forgot what that was like. Sometimes dreams are the only way I can remember what it’s like to have a body that works. What it feels like to walk without a walker, what it feels like to run as fast as I can. Such a lovely feeling.
So I guess we shall see what the future holds for little ol’ me. The future will come, this I know to be true and maybe I will feel better and maybe I won’t.
I’m still here and I’m still fighting most days. It’s all you can do. Hope you’re fighting too.