Entry tags:
State of the Rose
Hi folks,
So, some of you know I've been in and out of medical offices since May of 2024, after my dysautonomia sent my blood pressure into the stratosphere (198/99 is bad) and my ass to the ER. I'd just come off most of two years sharing two walls with an active construction zone at work, as an auditory-tactile synaesthete with pre-existing cPTSD. We had to move out of the building for a few months for some finishing construction in our workroom and offices, and a week into working from home, my body decided it could try to process some of the stress that had been bottled up over that time. Apparently, the contents of the bottle were under rather a lot of pressure, and it was too much all at once. My blood pressure wasn't the only thing to come unscrewed, but it was the one most likely to off me at the time.
It took until August 2024 to get into see a new primary for followup, because I'd been in another period of "Why bother?" with doctors after trying to get my health issues taken seriously for almost forty years. I was 12 the first time someone told me, "Everybody hurts sometimes, and nobody wants to hear you whine about it." I was 17 the first time a medical professional used the words, "I think it's all in your head."
Neither would be the last time I heard those things.
Most of the things I've been treated for that have actually helped for any amount were things I figured out on my own and badgered someone into ordering the tests for. I've almost always been right. I did end up forcing all the bonus thyroid tests at one point, all of which came back "normal," but I now have reason to suspect I wasn't as wrong as they decided I was. More on that later.
I took a pile of research in with me. A gamble, because that can get you labeled a hypochondriac or a drug seeker, but I also wanted to have it in hand when I told him I was pretty sure I had the trifecta of hypermobile Ehlers-Danlos Syndrome (hEDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS).
After some hemming and hawing, and half-assing* a Poor Man's Tilt Table that meant my heart rate only went up 28 bpm instead of the 30bpm, the new doc decided that we could just try to treat the POTS, and see what happened, rather than put me through the actual and barbaric tilt table test.
*You're supposed to start the Poor Man's lying on your back for 10 minutes, then stand straight up from that position and measure the difference in heart rate before and after. He started me from sitting on an exam chair where I could reach neither the floor nor the back rest.
He put me on a beta blocker over my reminder that those are contraindicated with MCAS. Ultimately, I'd try three different beta blockers over the course of the next nine months, all of which did a fine job of keeping my blood pressure low--sometimes too low--and also caused severe shortness of breath and about thirty pounds of fluid retention.
He did refer me to a rheumatologist for evaluation of my chronic pain. After arguing with the rheumatologist for a while, he decided to go ahead and run an EDS panel along with enough other blood tests to require an entire box of vials. He also ordered a nuclear bone scan, which lit up in all the joints from the knees down, followed by x-rays of those joints that showed no bone degeneration. He decided to diagnose me with rheumatoid arthritis (RA) anyway, and his response to my query as to how I could possibly have had RA for almost forty years with no bone degeneration was, "You got lucky." He put me on hydroxychloriquine, and I lasted three weeks before I took myself off of it because the side effects were unbearable and my pain got worse. (It's also contraindicated with MCAS.)
The lab, meanwhile, lost the EDS results, so it ended up taking me several months to shake that out, only to eventually find that I have variants on two different genes associated with different kinds of EDS, and the lab recommends "genetic counseling" to figure that out. Still waiting for that referral to go through.
In and out of more offices, assorted attempts to raise my Vitamin D and Vitamin B12 levels into a measurable range, a respiratory evaluation that suggested asthma, an echocardiogram that shows some wear and tear commensurate with my age, but nothing too concerning, finally a referral to an allergist/immunologist for MCAS evaluation, after I told my primary that I had to stop the beta-blockers, they were making everything worse. I also started montelukast and a shit-ton of two different kinds of antihistamines: cetirizine/Zyrtec and famotidine/Pepcid.
Saw the allergist in August of this year, but that required jumping through hoops to get a blood test to measure my baseline tryptase level, which was high enough to qualify to be seen. He's reluctant to actually diagnose MCAS until he gets a comparison tryptase level during an acute phase, but he was willing to treat it like MCAS in the meantime (which means it could be months or years before my next acute phase, so I may yet have to beat the clinical Dx out of him if I end up needing surgery again, because MCAS does not play well with a lot of anesthetics, and most allergic reactions happen the *second* time you encounter the allergen). That meant some prescription nasal antihistamines and a mast cell stabilzer added to my other meds. He also confirmed my growing suspicion that my last reaction to an ant bite was quite probably anaphylaxis despite the lack of airway involvement, and now I get to carry two epi-pens around with me everywhere I go.
Shortly after that, my ongoing research led me to MTHFR gene mutations, and I had a followup with my primary a week after my allergist appointment, so I applied enough pressure to get him to order the blood test for that. It took over half a month for that order to actually go in properly, but I learned a couple weeks ago now, that I do, in fact, have two copies of the C665T mutation, which means my methylation is fucked, and the B vitamins I'd been on were making things worse instead of better, because not only could I not process the cyanocobalamin version of B12 very well, I also couldn't break down the cyanide molecule that normally gets generated and then broken down harmlessly in people without the mutation.
My suspicions many years ago regarding my thyroid could have well been correct, since that gland does not work properly with poor methylation (the process that the MTHFR genes control), and it could have been struggling despite the numbers being okay on the days I was tested.
So, MCAS, POTS, and methylation are all exacerbated by stress. MCAS flares can trigger POTS episodes. EDS is a collagen disorder. Poor methylation leads to poor collagen production. Tendons and ligaments affected by EDS stretch and tear too easily, then poor methlyation means that the body can't even produce its Temu collagen to repair the damage, leading to more soft tissue damage in the joints, leading to muscle spasms as the body tries to hold bones in place with muscle instead of tendons and ligaments, leading to widespread musculoskeletal pain.
No wonder I've been battling fatigue and brain fog. No wonder when I barely started to relax after the torture of construction, everything spiked.
I started sublingual methylfolate and methylcobalamin (B12) on my birthday. The difference on the *very first day* was phenomenal. My legs didn't feel like they weighed a thousand pounds apiece. I could think. My chronic pain, which had been at a daily 8-9 for over a decade, was down to a 4-5. It's going to be a rocky six months or so as I replete the folate and B12 levels, because there will be days like today when one or more of my other conditions flares, and my body uses up everything it can get to deal with that. But for the first time in a long time, another thirty or so years feels like maybe a future and not a threat.
It's unfortunately come with wild emotional swings between incandescent rage and crushing grief at how much of my life has been stolen from me by all the people who were supposed to help me and didn't, and that is making it difficult to enjoy the improvements right now. Nothing for it but to ride it out.
Since getting out from under the storage unit last month, I'm a little better able to bear up under the rising cost of everything, but that's a "barely" kind of thing. I'm $45 away from meeting my annual out of pocket cap, so I'm going to celebrate by trying to get into my physical therapist for a tune-up for the EDS. Strength training helps with the muscle pain, and it won't cost me anything after the first $45 if I can get it done before the end of December. But in three months, that all resets, and who knows what kind of hikes I'll have to accommodate as far as premiums, deductibles, copays, etc.
Again, I'm bearing up okay, and I even pitch ten or twenty bucks into the mutual aid kitty from time to time in a couple of places when a grocery run ends up costing less than I budgeted for, so it's okay if folks would rather not, but I also know there are several of my people who are going to ask, so...
If you'd like to help reduce my stress levels, so my poor meat puppet can have an easier time recovering what it can right now, here's what I'm juggling in fixed-end-point bills:
$97.14 ($33/mo.)
$350 ($50/mo.)
$450 ($25/mo.)
$1961.92 ($62/mo.)
...seasoned with all the various one-off bills that come from unaffiliated labs or contractors that for some reason we're never allowed to know about until they show up.
Absolutely no pressure. Really.
Paypal: ackerson@gmail.com
Kofi: https://ko-fi.com/briarpatch
I'm hoping that my editing gig will have a project for me before the end of the year, which would let me put a dent in all that, but if past is prologue, it's unlikely that they'll have another one for me before the new year. I was able to put some extra on these with the one from earlier this year, but the monthly minimums don't go down in response, it just shortens the time left.
Anyway, I don't think we've completed the puzzle, but that MTHFR gene result really helps outline the shape of a lot of other sections. Thanks for reading along.
So, some of you know I've been in and out of medical offices since May of 2024, after my dysautonomia sent my blood pressure into the stratosphere (198/99 is bad) and my ass to the ER. I'd just come off most of two years sharing two walls with an active construction zone at work, as an auditory-tactile synaesthete with pre-existing cPTSD. We had to move out of the building for a few months for some finishing construction in our workroom and offices, and a week into working from home, my body decided it could try to process some of the stress that had been bottled up over that time. Apparently, the contents of the bottle were under rather a lot of pressure, and it was too much all at once. My blood pressure wasn't the only thing to come unscrewed, but it was the one most likely to off me at the time.
It took until August 2024 to get into see a new primary for followup, because I'd been in another period of "Why bother?" with doctors after trying to get my health issues taken seriously for almost forty years. I was 12 the first time someone told me, "Everybody hurts sometimes, and nobody wants to hear you whine about it." I was 17 the first time a medical professional used the words, "I think it's all in your head."
Neither would be the last time I heard those things.
Most of the things I've been treated for that have actually helped for any amount were things I figured out on my own and badgered someone into ordering the tests for. I've almost always been right. I did end up forcing all the bonus thyroid tests at one point, all of which came back "normal," but I now have reason to suspect I wasn't as wrong as they decided I was. More on that later.
I took a pile of research in with me. A gamble, because that can get you labeled a hypochondriac or a drug seeker, but I also wanted to have it in hand when I told him I was pretty sure I had the trifecta of hypermobile Ehlers-Danlos Syndrome (hEDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS).
After some hemming and hawing, and half-assing* a Poor Man's Tilt Table that meant my heart rate only went up 28 bpm instead of the 30bpm, the new doc decided that we could just try to treat the POTS, and see what happened, rather than put me through the actual and barbaric tilt table test.
*You're supposed to start the Poor Man's lying on your back for 10 minutes, then stand straight up from that position and measure the difference in heart rate before and after. He started me from sitting on an exam chair where I could reach neither the floor nor the back rest.
He put me on a beta blocker over my reminder that those are contraindicated with MCAS. Ultimately, I'd try three different beta blockers over the course of the next nine months, all of which did a fine job of keeping my blood pressure low--sometimes too low--and also caused severe shortness of breath and about thirty pounds of fluid retention.
He did refer me to a rheumatologist for evaluation of my chronic pain. After arguing with the rheumatologist for a while, he decided to go ahead and run an EDS panel along with enough other blood tests to require an entire box of vials. He also ordered a nuclear bone scan, which lit up in all the joints from the knees down, followed by x-rays of those joints that showed no bone degeneration. He decided to diagnose me with rheumatoid arthritis (RA) anyway, and his response to my query as to how I could possibly have had RA for almost forty years with no bone degeneration was, "You got lucky." He put me on hydroxychloriquine, and I lasted three weeks before I took myself off of it because the side effects were unbearable and my pain got worse. (It's also contraindicated with MCAS.)
The lab, meanwhile, lost the EDS results, so it ended up taking me several months to shake that out, only to eventually find that I have variants on two different genes associated with different kinds of EDS, and the lab recommends "genetic counseling" to figure that out. Still waiting for that referral to go through.
In and out of more offices, assorted attempts to raise my Vitamin D and Vitamin B12 levels into a measurable range, a respiratory evaluation that suggested asthma, an echocardiogram that shows some wear and tear commensurate with my age, but nothing too concerning, finally a referral to an allergist/immunologist for MCAS evaluation, after I told my primary that I had to stop the beta-blockers, they were making everything worse. I also started montelukast and a shit-ton of two different kinds of antihistamines: cetirizine/Zyrtec and famotidine/Pepcid.
Saw the allergist in August of this year, but that required jumping through hoops to get a blood test to measure my baseline tryptase level, which was high enough to qualify to be seen. He's reluctant to actually diagnose MCAS until he gets a comparison tryptase level during an acute phase, but he was willing to treat it like MCAS in the meantime (which means it could be months or years before my next acute phase, so I may yet have to beat the clinical Dx out of him if I end up needing surgery again, because MCAS does not play well with a lot of anesthetics, and most allergic reactions happen the *second* time you encounter the allergen). That meant some prescription nasal antihistamines and a mast cell stabilzer added to my other meds. He also confirmed my growing suspicion that my last reaction to an ant bite was quite probably anaphylaxis despite the lack of airway involvement, and now I get to carry two epi-pens around with me everywhere I go.
Shortly after that, my ongoing research led me to MTHFR gene mutations, and I had a followup with my primary a week after my allergist appointment, so I applied enough pressure to get him to order the blood test for that. It took over half a month for that order to actually go in properly, but I learned a couple weeks ago now, that I do, in fact, have two copies of the C665T mutation, which means my methylation is fucked, and the B vitamins I'd been on were making things worse instead of better, because not only could I not process the cyanocobalamin version of B12 very well, I also couldn't break down the cyanide molecule that normally gets generated and then broken down harmlessly in people without the mutation.
My suspicions many years ago regarding my thyroid could have well been correct, since that gland does not work properly with poor methylation (the process that the MTHFR genes control), and it could have been struggling despite the numbers being okay on the days I was tested.
So, MCAS, POTS, and methylation are all exacerbated by stress. MCAS flares can trigger POTS episodes. EDS is a collagen disorder. Poor methylation leads to poor collagen production. Tendons and ligaments affected by EDS stretch and tear too easily, then poor methlyation means that the body can't even produce its Temu collagen to repair the damage, leading to more soft tissue damage in the joints, leading to muscle spasms as the body tries to hold bones in place with muscle instead of tendons and ligaments, leading to widespread musculoskeletal pain.
No wonder I've been battling fatigue and brain fog. No wonder when I barely started to relax after the torture of construction, everything spiked.
I started sublingual methylfolate and methylcobalamin (B12) on my birthday. The difference on the *very first day* was phenomenal. My legs didn't feel like they weighed a thousand pounds apiece. I could think. My chronic pain, which had been at a daily 8-9 for over a decade, was down to a 4-5. It's going to be a rocky six months or so as I replete the folate and B12 levels, because there will be days like today when one or more of my other conditions flares, and my body uses up everything it can get to deal with that. But for the first time in a long time, another thirty or so years feels like maybe a future and not a threat.
It's unfortunately come with wild emotional swings between incandescent rage and crushing grief at how much of my life has been stolen from me by all the people who were supposed to help me and didn't, and that is making it difficult to enjoy the improvements right now. Nothing for it but to ride it out.
Since getting out from under the storage unit last month, I'm a little better able to bear up under the rising cost of everything, but that's a "barely" kind of thing. I'm $45 away from meeting my annual out of pocket cap, so I'm going to celebrate by trying to get into my physical therapist for a tune-up for the EDS. Strength training helps with the muscle pain, and it won't cost me anything after the first $45 if I can get it done before the end of December. But in three months, that all resets, and who knows what kind of hikes I'll have to accommodate as far as premiums, deductibles, copays, etc.
Again, I'm bearing up okay, and I even pitch ten or twenty bucks into the mutual aid kitty from time to time in a couple of places when a grocery run ends up costing less than I budgeted for, so it's okay if folks would rather not, but I also know there are several of my people who are going to ask, so...
If you'd like to help reduce my stress levels, so my poor meat puppet can have an easier time recovering what it can right now, here's what I'm juggling in fixed-end-point bills:
$97.14 ($33/mo.)
$350 ($50/mo.)
$450 ($25/mo.)
$1961.92 ($62/mo.)
...seasoned with all the various one-off bills that come from unaffiliated labs or contractors that for some reason we're never allowed to know about until they show up.
Absolutely no pressure. Really.
Paypal: ackerson@gmail.com
Kofi: https://ko-fi.com/briarpatch
I'm hoping that my editing gig will have a project for me before the end of the year, which would let me put a dent in all that, but if past is prologue, it's unlikely that they'll have another one for me before the new year. I was able to put some extra on these with the one from earlier this year, but the monthly minimums don't go down in response, it just shortens the time left.
Anyway, I don't think we've completed the puzzle, but that MTHFR gene result really helps outline the shape of a lot of other sections. Thanks for reading along.