Finally, after a forever-seeming wait, my bone marrow aspiration and biopsy is in a few days. [meeps!] The best I can hope for is that they won't find that a ton of mast cells have infiltrated my bones; the worst outcome is a myeloproliferative neoplasm. And, to add to the anxiety, I may be diagnosed with something that requires a zillion dollar treatment AND lose health insurance if the ACA is, indeed, repealed. If the pre-existing condition protection is undone I will be "hugely" fucked...but America will be great again! [vomit]
I keep from freaking out by focusing on the present,my Buddhist practice helps a lot with the remembering that there is no future, there is only this moment.
So, I've been making assloads of holiday cards to keep the creative part of my brain engaged. I have way more cards than friends to send them to. And who has home addresses these days? Not me, I had to text some of my friends to get their addresses because they always come to my house.
My house has always been our gathering place but as I've become more ill I had to cancel our regular dinners. There are too many days when I have to spend at least part of the day in bed. Now my body temperature doesn't even reach 96 on some days--it's often as low as 95.2, making me feel so frozen that I can't even function. Ten tons of blankets don't help much when the cold is inside.
My heart rate mostly hovers around 60. I can go for walks if I use my trekking poles and a motivational sativa. Honey Badger and Kali Mist are my new faves in that category, just in case you stumbled upon this when you were strain researching.
Here are some of the Steampunk Angels I did. More later.
The Stanford Cancer Center called me yesterday so let me know my hematologist wants to have a bone marrow biopsy and aspiration done. They're working me into the schedule for Dec.15. Blech.
In today's mail was my Welcome Package from the Cancer Center. It gave me the willies AND the heebeejeebies.
So, I watched the new Exorcist TV show to try to give myself a good reason to freak the fuck out.
The Welcome Package was scarier.
My tryptase levels have been significantly elevated twice now so I've just added another doctor to the CastofThousands that is my current medical team. Now I have a hematologist, although the soonest I can see him is mid-December. Meanwhile, my new Immunologist just had twelve (!) vials of blood drawn for more tests to be done at Mayo. The concern is not just mast cell disorders but also leukemias, lymphomas, and myeloproliferative disorders, oh my!
I need new reading glasses and could not be arsed to go to an optician (to be up-sold on expensive frames and special coatings) so I'm trying Warby-Parker's online store. They send you five pairs to try on at home, IF available at the time you want them. I couldn't get all five of the ones I wanted but did get three.
I want a retro-nerdy look and I think these may be a winner. My hairdo is definitely not winning anything so focus on the glasses and pretend I have sexy bedhead hair instead of flattened-by-my-pillow hair which is the only kind of bedhead I ever get. *sigh*
I can’t believe I’m still waiting for the majority of my test results from Mayo’s lab. So far, I’ve only received the results for the tryptase levels which were high—25% over the normal upper limit. My doc said she didn't want to scare me but it was likely I'd have to do a bone marrow biopsy and aspiration. I already knew that, of course, because the internet knows everything about diagnosing Mast Cell Disorders. And might I just add, a bone marrow biopsy will be a real motherfucker and I did not need the internet to know that.
I can’t understand why the 24-hour Urinary N-methylhistamine and prostaglandin D2 metabolite level; and the chromosomal test for KIT D816 mutation still aren’t in because I read how long it takes and it’s been almost three weeks since I ..er, submitted the sample. I should mention that said sample was a gigantic fluorescent-orange tub of urine that I had to collect every time I peed for 24 hours. It was a real joy hauling that ugly baby through a crowded lab waiting room at the medical center.
I hope nothing happened to the sample’s viability since I accidentally left the tub o’ piss out of the frig for over an hour. Ooopsie! It should've been fine since the instructions said refrigeration was recommended, not required. (Hanging my hat on the fine print, here, WTF, it works for me!)
Oyfuckingvey this shit is getting old.
I can because I may have it, the systemic kind. It's a long story I'm too tired to tell right now. It was quite a day at my new doctor's (yes, ANOTHER doctor) and then at the lab for blood tests that have to be shipped off to the Mayo Clinic. And tomorrow, I have to collect pee for 24 hrs so that can be shipped off to Mayo, too. Mayo has been the recipient of a lot of my body fluids this past year, just in case no one was wondering.
The crazy thing is that I researched this myself, sent a note to my rheumatologist Sunday night telling her why I thought I might have a mast cell disorder and first thing this morning her nurse was telling me they wanted me to see the Immunologist pronto. This was followed by a call from the Immunologist office saying one of the three doctors in that specialty could see my today if I could be there in an hour and a half.
She didn't need a lot of convincing to make the preliminary diagnosis--not just based on other conditions already diagnosed, but perhaps even more convincingly, because I had a full-blown freakish episode in her office due to lingering perfume in the elevator. Sometimes, other people can't even smell the things that make my system short-circuit. It's hard not to feel like a freak; it tends to make one withdraw even before one becomes incapable of anything else.
That's all it takes--any "chemical". Or most foods, heat, cold, sun on my skin, wind on my face, bright light, noise, stress, any clothes that aren't made of the softest natural fibers washed over and over to remove excess dye....That unavoidable stuff will provoke my peripheral neuropathy at best; trigeminal or glossopharyngeal neuralgia at worst. And along with this constant bone pain, muscle spasticity, fuckityfuckfuckfuck.
But the funny thing is how two different neurologists almost literally killed me. But that's another story for another night, perhaps after a day of PeeingForMayo. It's not going to be nearly as much fun as WankingForScience. I feel quite positive in that prognostication.
I swear, I don't whether to kill myself or go bowling.
First, thanks to the faithful few who keep checking in with good wishes--Annika, Peebs, Redman, and Marilyn--to be specific. I don't think I left anybody out because all those Europeans catching up on old my old Deadwood stuff don't count. Just kidding, NewEuropeanBuddies! Of course you count, without you my blog would be a bigger ghost town Deadwood, CA. *sigh*
I don't even know where to start with the catching up on the Health Fuckery Front, from now until further notice to be know as the HFF but if this gives you a clue I've been referred to a specialist at John Hopkins because he is the only physician in the country who's board certified in neurology, rheumatology, and internal medicine. Yes, it has come to that.
But fiddly-dee, and fuck-it-all, let's have some birthday folderol ..because this whatever happened to me about a week before my birthday TWO YEARS AGO and I'm still free-falling off this neurological ledge. So, today has been a challenge, about the two year thing. There may have been a few tears.
OK, a bucketful. Also, shutup.
An old friend sent me this photo today--that's me in the plaid dress right after a high school play. I was playing the Old West Lady Journalist. I can't remember what part the guy trick-of-photographly gazing at my derriere was playing but he was one of my best friends and he is a real-life preacher ..and he presided over my unfortunate TenMinuteMarriage. I do not lie, except about the marriage being an actual ten minutes--I wish!!.
I made my own costume --the dress, not the blouse. I bought the blouse, they were easy to find back then, I think prairie-looking blouses were all the rage in the Mesozoic Era. Annnnnyways. I was not a very good actress but that never stopped me. Nothing ever stops me.
I'll mop the floor with that bucket of tears.
I’ll update on the multitudinous diagnoses my new doctor has already anointed me with but for now I just want to be more like my old self and write about something embarrassing--like how about how I had to write my brand-new doctor a message on Day Two of our budding relationship to ask him if I might be risking my life by wanking off.
Yes, really. And, call me old-fashioned but that just seems more like a third visit kind of conversation.
And, of course, I was only masturbating for scientific purposes—they always want to know if your Sexual Function is normal on those Pain, Poop and Pee Questionnaires. I always put some smart-ass answer on the form like “when I find it I’ll ask it” or “when I invent a time machine I’ll go back 10 years and ask it”.
So, it’s kind of like my job to masturbate—to stay current on:
22. Ability to reach orgasm ..............…. Y or N
I do a lot of research. I have a strong work ethic: I always have. And skills from my business days like Vision and Creative Thinking.
Paging Dr. Skarsgard. Dr. Alexander Skarsgard. Please report to the Neuroscience Testing Lab, Suki Building, Penthouse Level.
Anyway, WTFelse am I supposed to doing while lounging about. And I have some weed medicinal cannabis that I call WankWeed for obvious reasons. But it’s not like I’d just be spanking the monkey all the time for no good reason. It’s not like I do it all the time and why should I feel guilty about using the more ambiguous term “sexual activity” in my note to my doctor. I just know somewhere down the road a question is going to come up about my partner and I’ll have to point at myself and say “right here”.
In some states I’m probably common-law married to myself.
Aaaaannnyway, here’s what happened—while my, uh, arousal was increasing pulsatile tinnitus (heartbeat in my ear) started going up and down in tandem with my arousal. I know because I was Wanking for Science so I ran an experiment. There was no control group, though, so it will not be published, only blogged.
I did not take the experiment to conclusion because it was like listening to an echocardiogram, and one thing this doctor found on my MRI that others didn’t was that my left ventricle is enlarged in my brain, about three times the size of the right. We don’t know what it means at this point so this could be dangerous for realz. And it gets more complicated. Potentially long road. Possibly winding also. Oh, and El Nino, never forget fucking El Nino.
I’ll actually post what I sent him but I’d have to explain some stuff first. Or not. You know me so well.