setsuna22
Update on where I've been!
Hello everyone!
I know its been a long time since y'all have heard from me so I thought I would update everyone on what's been going on with my health.
To start: I don't have MS 😅. Here's the crazy story about that...
tl;dr: turns out I had an extreme reaction to the COVID vaccine and it caused 4 different neurological issues which have made me disabled.
So, as per my last announcement, I was told by doctors that I have MS after a MRI of my brain was done that showed brain lesions and demyelination. I ended up being referred out to a MS specialist and after lots of blood work, a spinal MRI and a lumbar puncture it was determined I didn't actually have MS. I went to a second MS specialist and she agreed it wasn't MS. I was also tested for conditions that mimic MS and nothing. I was ALSO tested for about 40-50 other conditions and none of those came back positive either. I was a medical mystery but since I didn't have MS I was referred to a standard neurologist.
So, to step back a tiny bit, when I arrived to the MS specialist I for sure had Trigeminal Neuralgia and those mysterious brain lesions. At some point I woke up one day and my vision was pretty blurry and my speech was slow and slurred. My vision would also go black anytime I even touched my eyes. I went to the ER thinking I was having a MS flare or a stroke or something but after getting another brain MRI they told me that nothing was showing up as wrong. I told my MS doc (she sucked btw) and she looked at my eyes briefly and kind of just shrugged off the blurry vision so I took things into my own hands and saw an ophthalmologist. The ophthalmologist did a bunch of tests and told me I had pretty bad papilledema (swelling of the optic disc) in my left eye so he was pretty certain I had Pseudotumor Cerebri/IIH. I just needed a lumbar puncture to confirm and since I was getting one anyway to check for MS, we just ended up checking for IIH as well. I had high opening pressure so IIH was confirmed. For those that don't know about IIH, it is a condition where there is too much CSF in your brain and spinal cord. That extra CSF causes high pressure in the skull and its also called Pseudotumor Cerebri because it mimics all the symptoms of having a brain tumor except there isn't one. The biggest risk with IIH is losing your vision permanently to some degree and papilledema, if gone unchecked, is the first stage of that. They put me on a diuretic medication and my papilledema is mostly gone now. There is still a small amount of swelling but my ophthalmologist feels that that is probably permanent at this point. I also have some permanent things in my vision that I see randomly.
Okay so I go to the new neurologist and I definitely have brain lesions with demyelination, Trigeminal Neuralgia and IIH at this point. One issue that we have no explanation for at this point though is that my hands, feet and face tingle, go numb, or burn pretty much non-stop. (it was intermittent when my neuro issues first started) So, we do a bunch of testing for that and some other tests that we haven't done yet to explain why I have everything else. Eventually, after a skin biopsy, it is determined that I have Small Fiber Neuropathy which explains the tingling and such. Essentially, SFN is when your small fiber nerves die off/become damaged. So now I have 4 different neurological issues but no explanation as to why because the other tests we did showed nothing.
I had a running theory by the time I saw my new neurologist but I wasn't sure if my they would believe it or look into it. But, I now have a second new neurologist (the old one dropped my insurance) and she has confirmed that its possible, agrees that it's the most likely answer and it's my diagnosis at this point. So, it is believed that all of this is an extreme adverse reaction to the COVID vaccine and booster. The timing is too perfect and there's nothing medically wrong with me to explain otherwise. So, I got my first two shots in May and June 2021 and I started experiencing neurological symptoms in July 2021. They were somewhat minor at this point as well (minus losing hand mobility for about 10 months). I got my booster in April 2022 and two-ish weeks later I was in the ER (like I mentioned earlier) and diagnosed with IIH shortly after. My existing symptoms also got a bunch worse. So, for some reason the COVID vax caused my body to attack my neurological system, thus the 4 different neurological conditions. The NIH has actually released papers recently saying that they're seeing the vax cause abhorrent immune systems and causing neurological and cardiological issues. (One of which being SFN) So, at the moment my neurologist is trying to get me into a COVID long haulers/adverse reaction study being performed here but the wait list is a year long.
As far as treatment goes, I'm on a bunch of medications and I've been doing IVIG for six months now. IVIG is intravenous immunoglobulin so other peoples immune cells from plasma donations. The idea is that it will retrain and replace my current immune system and hopefully have it start healing itself. It's an infusion treatment so it involves having an IV placed and letting the IVIG go into my blood stream over about 6 hours. And I do that 2 days a month. It's used mostly for SFN but it hasn't helped those symptoms much yet. But, my husband has noticed a big change in my energy, cognition and memory so its helping somewhere at least! Despite all of that, I am currently about 6 months into a disability claim because I can not work as a doula or an artist anymore. I also just can't be very physically active either so I can't walk around places for long periods. When I do, the tingling gets insane and my feet go numb which causes me to start falling over. Hopefully, they'll accept my claim! I'm mostly wanting disability for Medicare because Medicaid sucks and I keep losing doctors. I could care less about the disability payments lol.
One last thing that I developed about 6.5 months ago is a pretty severe tremor. My hands shake like crazy and I have an extremely hard time with handling small objects. So drawing is pretty impossible at this point, same with crafts and some other things I used to do. In fact, I was just playing Ticket to Ride with my kids earlier and putting down my trains was extremely hard to do. 😩 And so annoying because its like, I'm trying to tell my hands what to do but they're just off doing their own thing lol. But one really good thing that happened is that I lost 105 pounds over the last 2 years! I was 235 from some medications I was on (which pushed me into morbidly obese) and I'm now 130 pounds. So, I went from a size XXL to a S and from a size 18 dress to a 4 now. I've been overweight most of my adult life and was never able to lose any of it so I'm very proud of myself for losing the weight (and keeping it off so far) with just diet alone because I can not exercise with my issues.
So yeah, if you've stuck around this long then thanks! Its been a long and convoluted 2 years but I think things are starting to take a turn for the better! Hopefully some day I'll be able to draw again but only time will tell. I've been documenting things on my tiktok which is @beebeengo if you're interested in following.
Inktober 2018 and so on...
It's hard to describe the pain adequately. It essentially feels like you've been drop kicked in the crotch at it's dullest moments and that your pelvis is being ripped in half at it's worst. You don't really notice how much you rely on your pelvis or use it until something like this happens. Spolier alert: you use it always. Both standing and sitting is unbearable if I do it for too long. Walking is doable to a degree (it hurts) but I pay for it later if it's more than just a few steps here and there in my house. And because the pelvis is so out of alignment, your muscles around the pelvis naturally get messed up as well. So, I also have sciatica in both legs which has been making it very scary for me when I stand up because my legs want to give out from the pain so I always brace myself, just in case. Stepping over things, getting out of bed, turning in bed especially, putting on clothes, getting in and out of the car, lifting anything, bending over and so on all trigger the pain. And even though I try to avoid these things the past few weeks, I've noticed that I can do less and less activity. I took my son to a pumpkin patch, walked a mile (which is not excessive or a crazy amount to walk at all. Most people walk 3-5 in a day) and was incredibly sore and found it incredibly difficult to walk for a week. I spent 10 minutes in the grocery store once I felt better to pick up like 5 things and was in more pain than usual for several days. I had my baby shower on Sunday, where I stood for brief moments, but mostly sat and I'm still in more pain than normal several days later. The further along I get (I'm almost 31 weeks), the worse it gets. My job is a desk job but I can't sit for more than an hour at my desk before my pelvis and sitz bones start screaming in pain, which is why I pulled the trigger on my mat leave today and why I never finished Inktober partially.
So now I don't know what I'm going to do with no work to do and with not being able to leave my house much either. My doctor hasn't put me on bedrest but I just know that I need to do it. I've been talking with him about it and he basically told me that I'm SOL until the baby gets here. Of course, he was very nice and empathetic about it but the message was still the same; there's nothing to be done. If you look up "cures" for SPD there is none. There are things that MIGHT help with the pain (I've tried em all: PT, Chiro, massage, ice, heat, Tylenol, belts, kt tape, essential oils, etc.) but the consensus is that the only real way to fix SPD is to deliver your baby and I'm still at least 7-9 weeks away from that.
Anyway, sorry this became a long rant lol! I would love to spend this time off drawing but that's obviously not going to happen. Once I feel better I want to complete my Inktober series, but that probably won't be until February for March at the earliest.
Fanime 2018
I'll be at Fanime as per usual this year! Ill be at table 1105.
That being said, things will be a little different. For starters, I will only be selling a limited amount of items and taking commissions as well. I'm not going to get into it too deeply but I've suffered some losses this year so I wasn't even going to go but my husband insisted I go and have fun. So, I did not focus much on doing anything new as I'm trying to just focus on having a good time this year.
So yeah, if you're going to be there then please stop by and say hello! And maybe buy a thing or two.
Inktober 2017
Since I'm participating in Inktober this year, I figure I'll keep a log of all of the art here.
Stay tuned daily in October to see more images! You can also view these images on my Twitter or Instagram October 1: Modern Witch
October 2: Flower Witch
October 3: Hipster Witch
October 4: Whoops! Missed this day
October 5: High Tea Witch
October 6: Flying Witch
October 7: FAMILY TIME
October 8: FAMILY TIME
October 9:Eye Witch
October 10: Mushroom Witch
October 11: Bunny Witch
October 12: Jack O' Lantern Witch:
October 13: Fall Witch
October 14: FAMILY TIME
October 15: FAMILY TIME
October 16: Cat Witch
October 17:
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