I've been debating with myself about whether I should get this written out since last January. I may or may not be past the scary part, I don't know, but I think I'm finally almost ok with it. I've accepted a lot of stuff in my life. This is probably the weirdest.
I've been living in a nearly continual state of "That sounds like Bell's Palsy" for 8 months now. I first had Bell's Palsy in 2004 and got pretty sick with it, and took way longer to heal than most people do. It also hit both sides of my face, which I read is fairly rare. First reaction to that is Oh wow, both sides drooped. No, the left side went through the nasty nerve pain while the right side drooped, and the neuralgia on the left side lasted for several years, long after the droop on the right side healed up.
So last January I woke up one morning to a sort of numb lower lip, the sort of numb like when your foot goes to sleep or you bump your elbow. Over the next several hours my entire head went numb, just crept slowly up my face and around my whole head little by little. Nothing else ever happened, no pain or nausea. When the inside of my mouth and throat started going numb I went to the ER. I wasn't really scared (my goodness, I've been through so much scarier stuff in my life). I'm very well acquainted with stroke symptoms since my mother died from multiple strokes, and this didn't fit stroke at all. My biggest concern was maybe a pinched nerve in my neck since so much I deal with seems to go back to a car accident I had when I was 19.
Well, they scared me plenty good at the hospital. The very first thing they got on ruling out was lupus flare up in the blood vessels in my brain. O_O !!!!! I know I'm a very lucky person for living this long with central nervous system problems and lupus, but I didn't know this numby head deal was a real thing or I'd have been into that ER a lot sooner. After hours of testing they doped me up on loads of prednisone and other stuff for *possible* allergic reaction. They had no idea what to tell me.
Repeat this in February, and add that my doctor did more testing and discovered I was in one of the biggest lupus flare ups I'd had in years, although obviously scans showed my brain wasn't involved. Repeat the big meds. But again, no resolution, no answers. Just the weird numbness and sparkly sensations showing up and hanging around for a couple of weeks.
I got used to it. Sort of. You really don't get used to your face getting weird sensations, it's very distracting. My entire head feeling like it's going numb hasn't happened again, but my face sure is doing stuff. Part of the summer had doctors and physical therapists thinking my face would be drooping any time from Bell's Palsy, but so far, nothing, even though the neuralgia increased around the base of my skull and into my ears, my eardrums feeling like they were being stabbed while the backs of my ears went completely numb.
I know, it sounds like it should be from my neck, right? But a neurologist told me no, another doctor told me it wouldn't do that, even a physical therapist didn't think so. So I've been living with an oddly numbish face for months, like I'm feeling everything through a layer of gauze, with bouts of sparkly itchies around my nose and eyes and my gums feeling weird, my forehead feeling heavy (that comes just before the droop in Bell's Palsy), and my lower lip going maddeningly numb. I've toyed with renaming myself Agrajag because I've bitten my lip and chewed up the insides of my cheeks so much this year.
Nearly 17 weeks of physical therapy so far over 4 months this year has been focusing on my neck and upper torso. After reaching a point where I can finally tolerate deep tissue ASTYM at the top of my neck and base of my skull (which is actually working after decades of nasty pain, what a relief!), the sparkly numbness is revving up again and it's all I can do to keep my hands off my face. After the initial Bell's Palsy in 2004 I nearly dug holes by my mouth and eyebrow on the left side for two years until my doctor feared I was encouraging cellulitis in my face, which is perniciously difficult to cure once infection embeds into the skin. I concentrated every day on keeping my hands off my face, and even woke up to unconscious scratching in my sleep and made myself stay awake so I wouldn't start scratching in my sleep again. All this was on top of the worst headaches I'd had in my life, which was on top of the constant neuralgia in my facial nerves with the stabbing pain in my ears.
The pain itself is nearly gone now. I feel naked without it, I have lived with it so long. I should be celebrating and dancing jigs at the utter lack of intense throbbing pain that I'd managed to live with for 30 years (I rolled a car when I was 19). But the pain has been replaced with the old itching behind my eyeball, itching around my eyebrow and nostrils, numb lips, sparkly sensations traveling around my cheeks, my tongue and gums feeling weird and half numb, food tasting funny or no taste at all, losing my sense of smell off and on, my ears going completely numb from time to time. The oddest part is this is happening on both sides of my face almost equally. The two halves of my face haven't felt equal probably ever in my adult life. Between that car wreck starting all the trigeminal and occipital neuralgia and then the Bell's Palsy doing weird creepy things, I've gotten so used to NOT feeling the same thing on both sides of my face that it's unnerving me aplenty to be feeling both sides the same way for the first time in 30 years. Hooray, you say, I should be happy! Ok, I say, YOU walk around with a numb face like this...
Nerves take a very long time to heal, but they say after so long a time that's all the healing you get, there is no more. I'm praying this is healing and not part of another surprise coming down the road for me. Ever since they checked my brain for lupus flare up I've been keenly aware that once something like that ever does happen, everything I'm trying to do right now might be over. What if these are warning signs?
It's hard to live with something big and scary every day and not bring it up all the time, but about the only way I've been able to live with this is to just never talk about it. Stay busy, keep my mind focused on doing other things. But this last weekend was huge. We broke through a wall in physical therapy with the deep tissue ASTYM. For the first time in 30 years I've been able to lift ten pounds of sugar and do upper body core strength exercises without triggering a certain very nasty pain up the left side of my neck. I'm a very strong person, lived for years on handfuls of pain pills and muscle relaxers while I kept working, and after that fell apart I've been doing everything in my power to avoid spinal surgeries. The only thing left after I run out of options is to just start frying nerve bundles, and I'm already high risk for surgery complications because of lupus and diabetes. I either find a way to get healthy, or I admit defeat and go back to pills and a desperate attempt to make my nerves stop screaming at me by simply killing them. I've been told by a couple of physical therapists I'm one of the worst cases they've seen for scarred fascia tissue at the base of skull, thanks to nearly ripping my head off in that wreck.
I'm not going to complain at all if I live the rest of my life with facial numbness, tingling, and itching, no matter how maddening it gets. Sure beats the nasty pain I lived with. Still, at the back of my mind is always going to be I really really hope this isn't my brain skating around the edge of a lupus pond...
All I can do is keep going. I said my goodbyes and I love yous a long time ago. I honestly never dreamed I'd make it this far, much less wind up in better and better shape. I am healthier now than I've been my entire adult life. I'm in less pain now than I've been my entire adult life. But if I suddenly disappear, you guys have an idea why.
I wasn't able to write that when it was the scariest. I'm fine. (I'm pretty sure...) Nothing else seems to be going on beyond the weird nerve stuff around my face. My headaches are all but gone, my nasty neck spasms are nearly gone, and I feel like my nerves are in a little bit of shock. I'm praying that this weird stuff going on is nerves healing. Maybe they're running diagnostics or something.