So I survived the treatment and stem cell extraction, as you know.
(I don’t think it has a high fatality rate anyways, but still considered a win in my books!)
I put every ounce of energy into fighting through my four weeks of Infusio to get to procedure day.
I got there.
Then I got home.
(On a horribly painful and long 24hr road trip, but I got there.)
And then, I GOT BETTER!
Jk, this treatment is going to take a minimum of a year to fully work it’s magic…er science before I’ll truly know the results and I’m not coming out of the gates too hot with the possibility of a procedure redo already being tossed around by my doc.. 😩
Am I surprised? No, as we know with me, things don’t seem to go as planned. I thought Infusio was my end all be all, my last step. No more research, no more drug trials, endless appointments and IV’s, dead end roads, and NO MORE SEIZURES. I think that my expectations hopefulness of that is largely what has brutally crushed my morale.
(Well, that + the salesman who said “the sooner you get here the better, we’ve seen the sickest of the sick!”.)
Let me back up though. We have much to catch up on.
The first couple weeks post stem cells (and treatment) were ridiculously painful from both the surgery and my seizures. Luckily my seizures were down to 1-2 a day, which was helpful, but ultimately one was enough at the time to feel the painful tearing of my fresh-out-of-surgery hip and butt. (No where near bone marrow biopsy pain though thankfully!)
I could barely make it from the toilet to my wheel chair without fainting; in fact more often than not I fainted even with assistance. I fainted so regularly all the triggers were unknown, sometimes I’d seize after and sometimes I’d just come back to and be a little sleepy.
I slowly gained some strength over weeks 2 and 3 and was able to push myself around my wheel chair. I noticed my psoriasis was nearly gone, which was nice, but about the only improvement thus far.
Infusio said the first 100 days is the most crucial healing time and that it will take time to heal and I’m on day 73. I am supposed to go back early July, but at this point it isn’t physically possible. There are two groups of people they have studied who have gone through the program. The first continue to feel better each day, the others continue to go through ups and down until remission. You can probably guess which one I am right?
(Or can you?)
Again, I’m neither. I have yet to feel any “ups” in 14 weeks post treatment, 10 post stem cells.
In week two and by week four, my seizure activity began increasing daily and I was having up to 6 a day, averaging 3-4. It was just like before I went to treatment only I was also much more weak and dizzy- I couldn’t, and still can’t even walk other symptoms are so exasperated.
It became so much for both my family and I we went to the hospital for help, which you can read that update here.
I left the hospital with an appointment for a psychologist, physical therapy, and new prescriptions. I also was even more weak. One afternoon I couldn’t focus my eyes for four hours and was unable to stay conscious long enough to eat a single piece of carrot when I was whooped with flank pain immediately causing me to flush red with hot tears and seizing shortly after.
By week 5 I was puking up med trials and constantly seizing. My bones, head, muscles, kidneys all ached and my chest and hips shot pains so sharp I couldn’t breathe at times. Then I would have a seizure and it all amplified. Even with supportive herbs, supplements and medications at one point I seized hard for four hours. I hardly remember that night except the misery and begging for it all to end.
Week 6 through 8 I batted the longest migraine of my life at nearly 12 days. I had acupuncture and seized on the table popping needles out of my back, then had a nutrient IV and seized through the entire drip the following week. I saw the psychologist and seized for nearly an hour on the cold hard floor bruising my body. I did the physical therapy my family Dr recommended and as no surprise to me, it sparked insane nerve pain and set off full body CRPS flare and more seizures. I had a scary seizure and fainting episode in the tub and then to top it off I got a skin infection and was gobbing ointment all over my burning itchy scalp and skin.
Shockingly enough, I also recently found out that neurological healing begins typically around months 6-9.
Seizures are a neurological symptom. That one stung. Maybe I knew that before and sub consciously blinded myself to it out of desperation and hope to get better. Or maybe I really did miss that memo somewhere along the way.
This could mean approximately 6-9 months of multiple seizures a day. That is, of course optimistically thinking that I will fit that “box” that neuro healing will begin for me then and start to work. I haven’t been one for checking the box or following the rules in this journey (and maybe some in life), but I’ll keep my fingers crossed.
I wish I could tell you this was all lies and for a pity party, but MY GOD. This is my life, This is unfortunately all too real and perhaps I’m far too honest about it all, but who’s to say?
Regardless, I am back researching non-epileptic seizure treatments whenever I’m not having one. Emailing and conference calling Dr.’s out of country, attending appointments locally and asking for referrals and medication trials out of desperation for this madness to stop or even settle slightly. My Dr at Infusio has instructed me to disregard the stem cells at this time and start treatment because of how poor my condition is and the stem cell procedure can be done again if need be. That also stung a bit. The reason I went to Infusio was because I wasn’t doing well on treatment here, so though I know it is not “starting over” it did break my heart hope a little. Sometimes I can’t help but feel back to where I was before leaving for treatment in the US. The exact same way I felt when I was denied IVIG (after being told I was approved to start any day). The exact same way I felt when my childhood dog died.
Gut wrenching, nauseating, helplessness and bitter sadness.
Do I have faith I will get better over a very long time? YES.
Does my body feel like a real life torture chamber right now though? YES.
That faith is there, it just varies in strength day to day. It’s often just the thought of living like this for another day let alone months or years that has become hard to cope with. I’m spending literally 3/4 of my days seizing and often in agonizing pain. Stripped of nearly everything I once loved to do. If I sat here and told you how wonderful I was doing it would be total BS.
So in the weeks that it has taken me to write, edit, and adjust this now novel of an update, I would like to tell you that I’m now on week 5 6 7 8 9 10 post stem cells. I’m having seizures and tremors every couple hours, sometimes 10ish a day (I lose count), sometimes lasting 30 minutes, sometimes lasting 10 hours. My ability to stay conscious has improved with new medications and supplements on board. I have felt momentary sparks of life followed by sparks of indescribable pain. I broke a personal record for the longest migraine of my life at nearly two weeks. (It is possible to break records while on bed rest!) My pain varies day to day, I’m still allergic to most foods and medications and to the sun more than ever before.
I continue to struggle to read or write, to work on the computer. I struggle with crowds, with noise, with temperature, with light. With eating too little or eating too much. It seems whatever I do has the potential to trigger a seizure. All my efforts in a day goe to eating, taking my meds and working on posts, updates, and messages.
(Okay + snuggles with my dog when I can make it outside.)
Regardless of everything, I am hoping with every ounce of my being that this will turn around sooner than later.
I am forever grateful for the support I have received in all forms. It continues to help me through and bring me light in these challenging and trying times. The little things really make all the difference right now.
Thank you all for reading my novel of an update and standing by my side.
I can’t say it enough.