#which is rare even considering my fatigue issues)
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coriander-candlesticks ¡ 4 months ago
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Me: I'm not sure if my health can withstand a commute. Should I try to go in tomorrow?
Apollo: no
Me: should I plan to work from home?
Apollo: no
Me: ...
Apollo:
Me: migraine?
Apollo: migraine.
#(cue it starting immediately afterwards)#i managed to take some painkillers in time to stave the migraine off but i still felt like shit the next day#so i couldnt have worked regardless#this was monday night (and tbf sunday & monday were *extremely* tiring days. i was falling asleep while crocheting & playing ac#which is rare even considering my fatigue issues)#yes/no divination has been great as a way to consult apollo without pulling out the tarot deck (which is more time consuming and takes#a *lot* more spoons)#the only issue is that when i do the stones or tarot i tend to get on a Divination Kick tm which is. not helpful b/c what am i going to do??#i've already finished asking what i needed to ask???#i should probably funnel that burst of dopamine/hyperfixation into researching different methods actually#gonna add that to the routine#also! working out the kinks with the yes/no method. doing it on my floor? no good. inconsistent results. Feels Bad. Loud#doing it on my bed? wonderful 10/10. very consistent results. Feels Good. not loud#i still do tarot on the floor though b/c having a flat sturdy surface is nice#for reference: my commute is 2-2.5 hrs each way via public transit. the sensory experience drains me *very* fast if im not careful and#we're in Purgatory Weather season where it's *juuust* warm & humid enough to maybe be a problem but isnt one For Sure#*and* the state fair is on so the trains are gonna be packed when im trying to get home#coriander says#helpol#hellenic pagan#hellenic polytheism#apollo#theoi#pagans of tumblr#hellenic community#paganblr
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muttren ¡ 1 year ago
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i have a disability. more specifically, i have a rare genetic condition called camurati-engelmann’s disease, or CED. it is also known as progressive diaphyseal dysplasia (PDD). it is an extremely rare disorder and only around 300 cases have been reported worldwide.
i figured i would make a post talking about it, in an effort to not only educate others, but to possibly connect with others who suffer from it as well. i apologize for the longer post but please this moment to learn about my disorder.
CED is a skeletal condition that is characterized by abnormally thick bones (hyperostosis) in the arms, legs and skull. the overgrowth in bone causes bone pain, muscle weakness and extreme fatigue. the pain feels like an electric stabbing pain, an ever-increasing pressure sensation around the bones affected, or a constant aching. pain can also occur in joints and they will often lock-up, becoming immobile and stiff. the pain is especially severe during 'flare-ups', which can be unpredictable, exhausting and last anywhere from a few hours to several weeks. this is a common occurrence for us, often causing extensive sleep deprivation from the chronic, severe and disabling pain. when this happens, we are often bedridden or housebound for days or even weeks.
those affected also have an unsteady walk and limp. thickening of the skull can also lead to neurological problems, like hearing loss, vision issues, vertigo and tinnitus. symptoms vary in severity from person to person. there are treatments, however it cannot be cured. pain management is a large aspect of living with this chronic disease.
there is very little awareness and research for CED. rare diseases are severely neglected and overlooked, as are those who suffer and live with them. research is often not considered profitable due to their cost to develop and the limited patient population. major federal funding agencies give preference to research that is likely to have a direct impact on patients.
living with a rare disease is extremely difficult and isolating. it impacts the lives of millions of us and our loved ones worldwide. those of us suffering from rare medical conditions should be entitled to the same quality of treatment as other patients. i am disabled, but i am worth it.
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loganwritesprobably ¡ 6 months ago
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Even Strong Men Have Weaknesses
Content/Warnings: Mihawk/GN!Reader, Crocodile & GN!Reader, Mihawk has chronic fatigue, cross guild era, established relationship, fluff, reader and Croc have chronic pain
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Dracule Mihawk, the World's Greatest swordsman.
Dracule Mihawk, your boyfriend.
Dracule Mihawk, the world's sleepiest swordsman.
You and Mihawk had been dating for a few years now, and it'd been pretty blissful for the most part. Now, on Karai Bari, life had never been better. Your shared tent did leave some things to be desired (like privacy) but there was very little to complain about. You were happy, healthy and comfortable. At least, as healthy and comfortable as two chronically ill people could be.
That was why your relationship worked so well, you suspected. The two of you understood each other in a way that an abled person couldn't understand, no matter how hard they tried.
Your boyfriend was known for his love of naps, but only yourself and Crocodile (his closest friend) were aware that it was a medical requirement. His chronic fatigue left him exhausted even from the smallest of tasks, and the fact that he'd mastered swordsmanship despite it made you admire him deeply. He'd succeeded despite his illness, and you were incredibly proud of him.
On the other hand, you had chronic pain. Often, you'd join Mihawk's midday naps if only to sleep away some of your aches and pains, though they'd always return when you woke. Resting was rarely a bad thing in your case. You both understood that sometimes you just had to say no, even to the smallest of things, for the sake of your health and that a relationship may not always be able to be 50/50, it really depended on how much you had to give on any day.
You'd grown closer with Crocodile since the beginning of the Cross Guild too, which was a nice bonus considering he and Mihawk had been friends for so long. He had his own issues with pain when it came to his missing hand, and you'd bonded over it. He was far less forgiving with himself despite your attempts to convince him to take it a little easy sometimes for his own sake. It was a work in progress.
"Love?" Mihawk called out as he walked into your shared tent, a yawn quickly following. "I'm already in bed, I was waiting up for you." You replied. Mihawk parted the curtains that separated your bedroom from the rest of the living space and then silently admired him as he stripped down to his underwear to sleep. "You're very good to me." He said softly, neither of you minding the long silence between your words and his response. He slipped into the bed and opened his arms for you to cuddle in closer, resting your head beneath his chin. "I try." You said with a yawn of your own, and it didn't take long for the both of you to be asleep. Crocodile had attempted to organise an afternoon meeting but you suspected the both of you would be missing it.
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Requests are open! See below links for my other works, and how to leave requests. I write both canon/canon and canon/reader requests for your enjoyment
AO3 | Fanfic Masterlist | Request Rules | Fic Trades Guide | WIPs
Tags: @claryeverlarkf @uselessboots
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doberbutts ¡ 4 months ago
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Saw in one of your transition timeline posts that you got taller on T and was real curious since that’s a really rare experience. Do you think you just had the dna for it/height range in your family ? Or were you surprised by the change?
In addition: do you have any other ways you’ve tried to transition physically other than HRT? Like do you use minoxidil / work out more than you did and stuff like that. Pseudo medical changes that don’t get talked about often are always interesting to me.
If I’m too nosy feel free to leave this in your inbox. Just hope you know I’m asking in good faith! Also I always appreciate you on my feed man. Good takes plus good selfies AND good dogs makes for a pretty damn good blog you really cracked the code on that one
Honestly I didn't expect to get taller at all and in fairness it was a fairly marginal amount (2in) BUT a couple things to consider:
I am intersex and began puberty at 6ish, had C cups by 7, and had my first period by 10. That is VERY early and likely accounted for my relatively short stature compared to the rest of my family, which brings me to my next point
My entire family is filled with people who are 6ft tall at minimum and I am one of only ones that never hit 6ft. And while that's not so unheard of, I think it also has a lot to do with my height gain. My biological sister is over 6ft tall. My father is over 6ft tall. My mother is almost 6ft tall. My aunts and uncles and cousins are largely over 6ft tall. The shortest of us is my adopted sister (4'9"), genetically my cousin, whose mother is over 6ft tall but her father was just over height of legal dwarfism (5ft even), so it makes sense that she's a little smaller. I was the next shortest at 5'8" which isn't really that short but seemed noticeably small when compared to the dozens of 6'2"-6'7"s of the rest of the family.
I think that also had something to do with how long it took to recognize that the early puberty did have an effect on my natural growth, because of course no one thought it was strange when I'm over the average height of a cis woman anyway... but then when compared to the rest of the family, my doctors quickly realized that I'm the odd one out and probably for a reason.
So while I was surprised by the change, it was more the fact that I started HRT at 30 and nearly 20 years post-puberty and less that I actually gained height. Like, I figured if I had started T when I'd wanted to at 13, I probably would have gotten taller. Maybe even that 6ft range the rest of my family's in. But I thought my height was simply my height when I did actually start T almost 2 years ago, so realizing one day that hey wait a second I'm actually taller was a pleasant surprise.
I am not on any other sex hormone supplement. I did start a cholesterol medication and change my diet when T made my cholesterol jump, mostly at my doctor's urging, but that wasn't a surprise because both the men and women in my family have cholesterol problems. I also expect to be diabetic at some point for the same reason. I don't work out, but I am more active on T, largely because it fixed a lot of my joint pain and chronic fatigue and blood pressure/heart rhythm issues. And just this month I started an inhalant steroid for my asthma, but I don't think it would have any effect on height as that's mostly just to make sure I can actually breathe during allergy season.
I'm not bothered by these questions at all. Ask away!
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etirabys ¡ 2 years ago
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on jogging
I took up jogging 2.5 months ago. I'm going off the c25k schedule, which slowly ramps you up from couch potato fitness to being able to run a 5k. This was much more effective than just trying to get into jogging by mimicking other, fitter, joggers, which was what I did every previous time I briefly tried to get into jogging. I feel embarrassed for never having thought of this before – it's clear that 'my brain was off' in those times when I went mimicry-running.
One issue that made me get into jogging so ineffectively: I didn't realize how terrible my starting physical fitness was. I used to think I was… like… normal? No athlete, for sure, but I'm a "normal amount of miserable" on hikes (and can complete most of them), I'm an intermediate boulderer, I rarely notice activities I'm gated from because of fitness. But when I started c25k with three partners, none of whom regularly jogged, they were all significantly less winded than I was.
And for the first dang time in my life I explicitly had a thought that went, "I can run 1 minute before my body forces me to stop. My partners can run 3-4 minutes. Some people can run 30 minutes."
Once I actually had any sense of "jogging levels" it was so clear how close to the bottom I was when I started out. That gives me some hope that being much fitter will solve my fatigue problems?
I used to be able to run 1 minute, and now I can run 2. By one (terrible but also kind of reasonable?) metric, I'm twice as fit as I used to be. But a nontrivial fraction of the population can jog 30 consecutive minutes! It seems worth getting to that point to see what that does to my energy levels / cognition.
–
Also: I haven't been sticking to the c25k schedule. I go 1.5 times a week where it expects 3, and I stuck a level between week 2 and week 3 because the 1.5m->3m jump looked insane to me. I've been on that custom level 2.5 for a month. I had a mindblowing conversation with the giant and 81k yesterday where I went, yeah, I've been stuck at week 2.5 because I've felt unready for week 3. And they said, that's probably because you're not going enough.
What do you mean? I asked. I've run about a full session and a half session every week for four weeks. Isn't that the same as 3 full sessions every week for two weeks?
No, they said, surprised I didn't know this. There's an optimal timing. If you'd probably stuck literally to the c25k schedule you probably could have gone from level 2 to 3 in a week.
GYARJRGH? I said. FUSBARIJIJJLK?
(I still disbelieve the literal claim that I can go to level 3 after doing level 2 properly, but I believe them that I would be leveling up a lot faster if I stuck to the schedule)
–
Anyway, some things I'd like to say to my past self, who felt obligated to work out for fatigue issues and then proceeded to exercise very badly because there was such a big ugh field around the topic of exercise:
You do not realize how big the gap between you and even moderately athletic people is. This is good, actually. It means that the correct place to start is easier than you think.
You should try to do it like 3 times a week. Date a jock. There are some on tumblr
Consider starting this when you have positive pressure rather than negative pressure. When you're buckling under multiple joy-sparking projects and want to rise to the challenge, it will be much easier to start & stick to it than when you're an anhedonic lump who has nothing to look forward to, but knows that exercise will in theory make life better in some vague way.
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nyaagolor ¡ 2 years ago
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What's going on with Nemona's wrist?
this is mostly just me putting down all my thoughts about this hc I have. Below the cut bc it's long as usual but read on if ur interested in like. orthopedics
I think Nemona has fatigue and some kind of wrist Issue because 1. She implies she has decreased motor function in that arm (can't throw pokeballs well, supports her arm with her other hand during battles) 2. She wears a brace 3. She gets winded easily / needs to catch her breath more than other characters / hates stairs So that got me wondering what the cause could be. I work in an orthopedic office and my shifts are 12 hours so sometimes when it's slow and I'm bored this is what my mind wanders to
Option 1: It's carpal tunnel and she's out of shape This is the most obvious answer since carpal tunnel is a repetitive stress injury and she's wearing a brace that looks almost identical to irl braces for that problem. Throwing pokeballs over and over, especially incorrectly, would be the most likely cause of an asymmetrical injury like that, and is actually reasonable for someone of her age and activity level. The winded thing is just because she's out of shape and has no underlying cause. Or maybe she just has some kinda chronic pain / fatigue disorder. That's not my department idk
Option 2: Oligoarticular JIA (juvenile idiopathic arthritis) This very long name is just describing chronic joint swelling in children that affects less than 5 joints. It's an autoimmune disease, and actually not that uncommon all things considered. It causes stiffness and pain, which would explain the stamina issues and motor skill issues. Plus, the constant flexion and extension of the knees from staircases certainly would explain her distaste for them in particular. That shit hurts. Occasionally people will use a brace for JIA-- it's highly unlikely her wrist would be the worst considering the typical presentation patterns (it usually affects bigger joints first like the knees) but hey. It's possible! This condition also affects young girls more often than other groups so. Math checks out
Option 3: Ehlers-Danlos Syndrome (hypermobility type) Figured I would include this bc I've seen a few people hc this and wanted to give it a fair shot myself. This is a heritable connective tissue disorder that causes hypermobile joints, chronic pain, fatigue, and a whole host of other things. Specifically tho, this disorder used to be called EDS type III and is now considered part of the Hypermobility Spectrum Disorders, but that's a can of worms for a post that's not this one. While the symptoms do match, and honestly quite well (a brace for stabilization makes perfect sense and the fatigue symptoms feel pretty on the nose) the disease usually causes very stretchy skin and vascular issues that she doesn't seem to have so I'm a tad on the fence
Option 4: Cervical spinal stenosis Despite this being the first thing that came to mind for me (since I see it a lot in the office) I'm now less convinced this would be the case. This disorder is basically a narrowing of the spinal canal that pinches the nerves in the neck. It can cause pain, weakness, numbing, and pain that radiates down the body. If most of the compression was on the C4 and C5 nerve I can see it affecting one arm / wrist especially rough (since the pain is typically bilateral but asymmetrical) but also this occurring in people under the age of 50 is SUPER rare so eh. It's possible it was congenital or caused by an injury but I wouldn't bet on it. As for the stamina issues, the neurological issues caused by the compression would likely be the cause of that, especially radiating down the back and legs. Felt worth it to include even if I'm not 100% convinced
I'm saying "options" here bc these symptoms are super vague and there's like 80 billion things that could cause it, I'm just racking my brain for different possibilities. If anyone has other hcs for the underlying causes of Her Whole Deal lmk I'm curious
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I saw one of uyr most recent posts, and a thought occurred to me. (I know it was about more of a trans Masc experience but my question regards what could b describedas the opposite so i hope i dont trigger anybody). Can fat be transferred To the breasts? Cause I don't want plastic or silicon in my chest if possible. thans for reading
Lee says:
Yes, it is possible, but fat grafting can carry risks (necrosis, infection, lumps) and most of the fat that is grafted doesn't remain there and is reabsorbed by your body so it often requires multiple sessions.
As a result, fat grafting wouldn't be able to provide a comparable increase in breast size compared to implants.
Fat grafting might be used to correct small divots and smooth out the contour after someone has had a double mastectomy for top surgery, for example, but it wouldn't be used to increase the breast size by a cup or more as is typical in a breast augmentation.
Solid silicone and saline-filled non-textured breast implants are typically your best option for breast augmentation if estrogen does not create the breast growth you had hoped for.
A plastic surgeon can tell you more about the risks of implants, but risks may include:
Capsular Contracture: This is a condition where the scar tissue around the implant tightens, which can cause the breast to feel hard and may result in discomfort or changes in the breast's appearance.
Implant Rupture or Leakage: Breast implants can rupture or leak. A saline implant rupture will lead to deflation and an obvious change in breast size, while a silicone rupture may go unnoticed (silent rupture) but can cause pain, breast shape changes, or even local complications.
Infection and Bleeding: As with any surgical procedure, there's a risk of infection and bleeding. In some cases, the implant may need to be removed and reinserted after the infection is treated.
Changes in Sensation: Some people experience changes in nipple or breast sensation. This can be an increase or decrease in sensitivity and may be temporary or permanent.
Breast Pain: Some individuals might experience pain in their breasts following the surgery, which can be temporary or chronic.
Asymmetry or Unsatisfactory Cosmetic Outcome: There might be dissatisfaction with the aesthetic outcome, including issues like asymmetry, unsatisfactory size, or scarring.
Cancer: A rare but serious risk associated with certain types of textured breast implants is a type cancer.
Need for Additional Surgeries: Implants do not always last for your entire life. Over time, they may need to be replaced or removed due to various issues like cosmetic concerns or complications.
Interference with Mammograms: Breast implants can interfere with the detection of breast cancer during mammograms, requiring additional, specialized views.
Systemic Symptoms: Some individuals report a variety of systemic symptoms known as breast implant illness, including autoimmune diseases, joint pain, mental confusion, muscle aches and chronic fatigue.
While all of that sounds scary, and you may feel like the risks aren't worth the benefit for you, many folks undergo breast augmentation without complications. It's a choice each person has to make in consultation with a plastic surgeon based on their own needs, goals, and medical history.
Shared decision-making with a surgeon can help you decide whether breast augmentation is right for you. They can also help put the risks in context and can tell you the percent of patients that typically have those complications-- often it's pretty low.
So if you may be considering undergoing a breast augmentation, the potential for complications are something you should discuss with a surgeon-- they can also tell you more about what techniques can be used for augmentation.
Followers, anything to add?
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maddisandy ¡ 1 year ago
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September is Chiari Malformation Awareness Month!
Hi yes hello! Since many people probably aren't aware of it, I wanted to bring attention to something we ourselves have called chairi malformation at the start of its awareness month! Its recognized with a purple ribbon usually with a zipper on it (for the zipper scars of those who've had Chiari surgery)
What is Chiari Malformation?
Chiari (key-arr-ee) Malformation is a brain malformation in which the brain is too large, skull is too small, or some combination on the both, causing the cerebellar tonsils (and in some instances the brain stem) to slip through the skull and into the spinal chord.
Chiari is most typically a congenital effect. There are two main types (though they aren't the only ones). The most common of the two us Chiari 1, in which only the cerebellar tonsils are descended through the skull. The second most common, Chiari 2 (also known as Arnold-Chiari malformation) has more tissue herniation in the cerebellar tonsils and even the cerebellum, as well as brain stem herniation as well.
(See Below, the Cerebellar tonsils are marked in red while the brainstem is marked in green and yellow. This is considered a normal MRI)
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Chiari malformation is likely to occur in 1 in 1,000 people, making it uncommon but not rare. The statistics are likely to be slightly higher than that for Chiari 1, as many people don't present symptomatically (and many incidents are only found in cases where the person was receiving radiological imaging for other instances such as head injury, so many people are unaware they had Chiari to begin with).
The only way to diagnose Chiari is through radiological imaging (many arguing upright MRI specifically is the only proper way to view the real level pf herniation). Herniation is measured down from the McRae line to the lowest point on the cerebellar tonsils. Depending on the accuracy of the machine (and which imaging tool is used) herniation can appear at different levels at different times. (See below, my first MRI looks markedly less in comparison to my second MRI, which features a roughly drawn on McRae line. In the second image I was noted to have a 7-8mm herniation.)
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Symptoms
Chiari is marked by a number of symptoms and commorbidities, even moreso depending on the type you have. Symptoms can occur at any level of herniation. Some people with Chiari can have a 3mm descent and have debilitating symptoms, while some may have a 15 mm descent and be completely asymptomatic. The most common of these is occipital headaches & migraines, ranging from mild to severe, but many more are possible. These range from...
Balance Issues
Dizziness & Vertigo
Neck & Shoulder Pain
Difficulty Swallowing
Sore Throat
Sleep Apnea
Nausea & Vomitting
Tinnitus & Hearing Loss
Blurred Vision, Visual Snow, & Vision Loss
Muscle Weakness
Numbness or Pins & Needles (Caused by Nerve Damage)
Poor Motor Skills
Fatigue
Cognitive Difficulties (including but not limited to Brain Fog, Memory Problems, Confusion, & Difficulty Speaking)
Insomnia
Photophobia/Light Sensitivity
Syncope, Fainting, & Drop Attacks
Seizures
Dysautonomia
Since the cerebellar tonsils block the opening to the base of the skull, Chiari can halt the proper flow of CSF (Cerebral Spinal Fluid) between the brain and the spinal chord. Because of this, Syringomylia (cysts filled with CSF formed on the spine called Syrinxs) is considered common with Chiari. Other common disorders with Chiari are Scoliosis, EDS & Cervicocranial Instability, POTS, Tethered Spinal Chord Syndrome, Spina bifida, & Hydrocephalus.
So What's the Solution?
Well, the only known solution for Chiari as of right now is surgery. This surgery is called posterior fossa decompression-- in which a small portion of the base of the skull is removed from the Chiari patient to relieve pressure and give more room for the brain. The surgeon can then do for sone patients a duraplasty, in which the dura (or opening of the brain) is cut open and a patch of tissue is sewed into the incision to make the dura bigger and give even more room for the brain. Surgery can also be done as a preventative measure against syrinxes for those without them. In the case the patient also has a syrinx, more surgical procedure can be done to drain the cyst. In patients with EDS, special procedures must be made to avoid surgical complications and making things worse.
Surgery is not guaranteed to completely alleviate symptoms, but typically helps with some. However, due to large misunderstanding and disagreement on proper diagnostic traits of Chiari from doctors (most typically neurologists and neurosurgeons) many may be denied surgery for a number of years, and Chiari Diagnosis can take on an average of 4 years to officially receive.
Some go years experiencing symptoms and having "low lying cerebellar tonsils" (or similar language, such as incidental tonsillar ectopia) noted on their radiology reports without doctors officially recognizing it as Chiari. In this time many are misdiagnosed with other disorders such as chronic headaches, multiple sclerosis, fibromyalgia, and more before finally finding a doctor who will listen. Many will brush off the radiological findings as just a difference in your brain being formed at birth before admitting the symptoms can be due to Chiari. It can take years of your own patient advocacy before someone finally listens.
This is why awareness to it is so important, in hopes of reaching other people and doctors and forming a stronger understanding of the condition from information found by experts on it and those with Chiari themselves. With more awareness comes more accessibility to treatment and surgery so those who are symptomatic can hopefully find some relief. So this month send a little love & luck to those with Chiari!
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anexperimentallife ¡ 8 months ago
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Life/Health Update
The thing we've been most worried about is the damage to my heart from COVID and anti-inflammatories. BP has been slowly going down over the past few months, so that would seem to indicate that at least SOME of the damage to my heart is healing. Let's hope. Need to get all those tests done again to know for sure, but for now they've taken me off one of my BP meds, so that's promising. (This was the main thing we were considering trying to get back to the states for, so I could use my medical benefits.) The rest of the stuff impacts quality of life, but isn't directly life-threatening, so if the other issues have to wait, they have to wait.
The hole in my throat still needs closed up. That will probably be the priority once we get my mouth issues (below) sorted. This one is kind of dangerous, as food, medication, and liquids often get stuck in there, and can throw off med dosages and sometimes cause me to choke. Been lucky so far, I guess.
One place in my jaw still pokes through inside, and another is threatening to. If those places don't start reabsorbing within the next few days, they'll have to open up the inside of my mouth AGAIN to file them down. So I'm gumming my food for at least another eight weeks before we can do anything about new teeth.
We're able to get the eye drops that take down the swelling in my retina fairly regularly now, so here's hoping that if I keep using them for three more months they'll have some kind of permanent effect. Probably still need surgery on that eye, though. Sucks that this happened to my formerly good eye--it used to have 20/10 vision. Temperature seems to play a role in the amount of fun-house-mirror-vision, but we live in the tropics, so not much to do about that. (We live in the mountains, so it's not as bad as the lowlands, but AC is rare up here.)
I don't think the cataract in the other eye has gotten too much worse, but that's obviously going to need surgery eventually, as well. If I can come out of this with one good eye, I'll consider myself lucky.
Brain fog (combination of long COVID, ADHD, Autism, and a traumatic brain injury) is still bad, but not as bad as it was. Nothing to do about that but wait.
My spine injuries are still an issue, with occasionally arm cramping/paralysis that used to be JUST in my right arm, but now sometimes spreads to my left. At least the cramping keeps the muscles toned? (Trying to look at the bright side here.) Neck exercises and stretching help with that, as does ice. (I mean, yeah, there's the constant pain, too, but that's the least of my concerns.)
Still need that second foot surgery, because the cauterization didn’t completely take from the last one; not only am I open for another infection (like the two-year one that an infectious disease specialist finally cleared up for me), but walking is pretty painful, too, even if I’m not talking about joint injuries.
Joint injuries... Hoo boy. Definitely gonna need a hip replacement eventually, and probably both knees.
I have chronic fatigue now, plus every pre-existing condition and old injury I had has been exacerbated by long COVID. It sucks. My stamina is improving little by little, though.
Treatment for all of the medical stuff has to wait for one thing at a time to be affordable. My health was stable until COVID, but now... Damn. Unfortunately, COVID came around around the time we found out we were having a baby, and four bouts of COVID have left my health completely fucked and exacerbated all my old injuries.
(If you're new here, you may not know that the licensing contract to convert some of my old fiction to a game--which, fortunately, did not count as "work income" for social security purposes--got canceled just weeks after El was born, meaning our income dropped way down, and that a snafu with Eleanor's birth certificate made her stateless, which took every bit of our savings plus the proceeds from a fundraiser to correct. If not for the combo of COVID and El's birth certificate snafu, we'd be fine both medically and financially.)
I'm working on plotting out more Quiet World and Alex And stuff, which I'll be shopping around, but frankly, even if it sells, it probably won't be much. (If you were here in 2013, you may remember that I had just started to have success selling my fiction to pro markets when my sons died, which threw me for a loop for several years, so I have to start over building a reputation.)
We've considered a move back to the US to use my medical benefits, but a) that'd be expensive af, and b) the US may be on the edge of becoming a military dictatorship, so even if we had the money for it, we'd want to wait to see what November holds.
So yeah, that's what's been going on with my health and our finances. As always, @thesurestthing and Baby El bring me joy, and my sort-of-adopted niece @geniussheepworld is a great help to all of us.
With so many people in the world suffering so much, I am reluctant to post a funding link. We are MOSTLY financially stable--it's just that we have to save up for my medical stuff while we work to finish paying off about 11K USD of debt from El's paperwork thing and all the medical whammies (and thank you to everyone who has helped already)--but if you want to help with that, the best link is either our paypal donation link or Ko-Fi.
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unfilteredrealities ¡ 10 months ago
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Monday to Tuesday I slept 13 hours which is wow.
I do not remember when I slept that many hours the last time. I think I desperately needed it though. I rarely fall asleep at 6pm in the evening and wake up again at 7am in the morning.
Lately my chronic fatigue is getting worse and thus I do not wonder why I’m so exhausted and fatigued.
Since 2 weeks I have daily bloating issues and it’s so annoying and painful especially if you have to sit for 40h a week at the job I’m working. I keep getting cramps and I hear my digestive system fight with itself 😭
The moment I arrive home I fart my soul out because that’s not possible at work unfortunately due to feeling too embarrassed to do it even if I would try to fart in the toilet , I’m still too ashamed.
I thought at first it might be that I’m maybe pregnant but I think I did 7 pregnancy tests from analog to digital and there is no 2 lines so that is ruled out even though I didn’t get my period yet and I am late as fuck. Or the 4 days light spotting I had was actually my period but I deemed it as too light to consider it as my period 🤔 Oh well.
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undeadorion-archive ¡ 2 years ago
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Went to a sleep specialist today and I thought maybe, just maybe, this one will listen to me. Maybe this one will understand my problems.
AND HE UNDERSTOOD THEM THE LEAST. I'm so angry. He didn't even LISTEN to me.
In my notes he included the phrase "The best treatment for sleepiness is a nap." MY ISSUE ISN'T BEING SLEEPY YOU IGNORANT FUCK. I never said I'm SLEEPY. I'm FATIGUED. You should know the difference! But on top of that, who the hell has the luxury to take a nap any time they want? He didn't even MENTION naps, just put it in my notes. So I couldn't tell him to his face that naps DO NOT WORK FOR ME. I still have to take them almost every day, but they do jack all for my fatigue. I just run out of energy and my body decides it's nap time. Whether i'm at my desk or in bed.
Then he put me down as having "Chronic Insomnia" which I know for a fact I DO NOT HAVE. The rare times I have the luxury to let my body sleep as long as it wants, I sleep 9-10 hours a night with 2-3 hour long naps through the day. I more than likely have delayed sleep phase syndrome, which just means my body doesn't like going to sleep until 5am. But did he ask anything close to that? No. No he did not.
He also asked if I sometimes get up at night to go to the bathroom, so I honestly said yes. Because it happens. SOME times. Not consistently. Only if I drank way too much water before bed. Or if something else woke me up. Which happens when you have a cat and sleep super late. And he put down fucking Nocturia. Which is a CHRONIC disorder where you wake up multiple times a week to pee in the middle of the night. He never asked me HOW often.
And of course he decided i MUST have sleep apnea, too. I don't have a sore throat in the morning, I don't wake up gasping for air. Every sleep tracking app I've used barely picks up a blip of waking up at night. My only symptoms are being overweight and tired. Must be the fat person disorder where you're strangled by your own fat at night. Cause fat people can't have anything else wrong with them other than being fat. And being fat certainly can't be considered a SYMPTOM of the underlying cause because being fat is a personal choice and moral failing. No other cause. Not society. Not poor living conditions. Not poor access to food. Not being so exhausted you can barely cook for yourself so you end up living off cereal and PB&Js only to be scolded by your doctor to eat better.
I'm so tired and so angry.
I spent 2 years with my primary doctor just telling me to eat better and get more exercise. Every single visit. She didn't listen to me when I said I couldn't. When I described how I feel when I exercise. When I explained that a single 20 minute bike ride will wipe me out for 2-3 days and leave me with severe brain fog. She just said keep exercising and you'll feel better.
It took ME figuring out that was called "Post exertion malaise" and is a symptom of ME/CFS. And that was AFTER I went to her and said "My sister has fibromyalgia, could I have it, too?" and a rheumatologist told me it was more likely ME/CFS. Then I researched the symptoms and it fit way better.
But my primary doctored said it still sounded more like fibro. Then sent me for the fucking sleep study. She also insisted on trying fibro medication to see if it helped. It started to help. But then made me so goddamn tired it made me worse.
Thankfully my home sleep study follow up is with a DIFFERENT doctor. Hopefully that doctor will be more compassionate and willing to listen to me. I don't have insomnia. I don't need sleep aids. I just need to find out why my body can't regulate its own energy.
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technicallyfadingperfection ¡ 16 days ago
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How Doxycycline Ruined My Life - Risks Exposed
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For many, Doxycycline is a trusted antibiotic prescribed to treat a variety of bacterial infections, including respiratory infections, acne, and Lyme disease. However, for some individuals, this common medication has caused unexpected and severe side effects that have profoundly impacted their lives. If you’ve found yourself searching for doxycycline ruined my life, you are not alone in your struggles.
In this blog, we’ll dive into the side effects and personal experiences that have led individuals to feel that doxycycline, rather than helping them, has caused lasting negative effects. From severe health issues to a complete disruption of everyday life, the unintended consequences of this medication can be life-altering.
What is Doxycycline?
Doxycycline is a type of tetracycline antibiotic, commonly used to treat infections caused by bacteria, including skin conditions, urinary tract infections, and Lyme disease. It works by inhibiting the growth of bacteria in the body, helping to prevent or treat infections. Like other antibiotics, doxycycline is typically prescribed for a specific duration, depending on the type and severity of the infection.
While many people experience no or mild side effects, others have reported severe reactions that have dramatically impacted their physical and mental well-being. It’s important to acknowledge that medications like doxycycline affect people differently, and some may suffer adverse effects that outweigh the benefits.
The Start of My Journey: The Prescription and Initial Hope
For many who experience severe side effects, the journey begins innocently enough. They visit a doctor with a specific health concern, and doxycycline is prescribed as the solution. Initially, things may seem to improve, and the hope is that the antibiotic will alleviate the symptoms of the illness. However, for some, the side effects begin shortly after starting the medication and quickly escalate into something far worse than the original condition.
Common Side Effects of Doxycycline: A Closer Look
It’s important to note that doxycycline is generally considered safe when taken as prescribed. However, it does come with a range of potential side effects, some of which can be severe or long-lasting. Some of the most common side effects reported by those who feel that doxycycline ruined my life include:
Gastrointestinal Issues: Nausea, vomiting, and severe stomach pain are common complaints among users. These can be so debilitating that they affect the ability to eat or carry on with daily activities.
Photosensitivity: One of the more well-known side effects is extreme sensitivity to sunlight, leading to severe sunburns even with minimal exposure. This can force people to stay indoors and avoid social situations, drastically altering their lifestyle.
     Skin Reactions: Rashes, hives, and other skin conditions may develop, often causing distress and discomfort. For some          individuals, the rash can be severe and leave lasting scarring, affecting self-esteem.
Mental Health Impact: For many, doxycycline has brought on unexpected mental health issues, including depression, anxiety, or feelings of confusion. These can be a direct result of the drug, or they may be exacerbated by physical discomfort.
Liver Damage: Rare but serious, some individuals experience liver problems as a result of taking doxycycline. This can manifest as yellowing of the skin or eyes (jaundice), fatigue, and other symptoms, potentially leading to long-term health complications.
Long-Term Health Effects: In some cases, individuals report that the side effects of doxycycline persist long after they have stopped taking the medication. These long-term health issues can include joint pain, headaches, and chronic fatigue, leaving people struggling to regain normalcy in their lives.
The Emotional Toll of Dealing with Side Effects
One of the most difficult aspects of experiencing severe side effects from doxycycline is the emotional toll it takes. As many individuals have reported, the sudden onset of debilitating side effects can feel isolating, frustrating, and confusing. The medication that was meant to help them can end up contributing to feelings of hopelessness, depression, and anxiety.
For those who experience lasting health problems or mental health challenges, the feeling of being trapped in a cycle of treatment failure can be overwhelming. The loss of quality of life, coupled with the inability to find answers or relief, can lead individuals to search for ways to share their stories and find understanding.
Coping with the Aftermath: Seeking Help and Healing
After experiencing the negative effects of doxycycline, it’s crucial to seek medical attention to assess the damage caused. Some individuals may find relief by discontinuing the medication and seeking alternatives, while others may need long-term care to manage the lingering effects. A few steps that may help include:
Medical Consultation: If you suspect that doxycycline has caused long-term issues, seek help from a healthcare provider who is knowledgeable about drug-related side effects. Tests to assess liver function, kidney health, and other aspects of your health can help determine the extent of the damage.
Mental Health Support: Dealing with the emotional aftermath of severe side effects can be just as challenging as the physical symptoms. Consider seeking support from a therapist or counselor who can help you navigate the stress, depression, or anxiety that often accompany such experiences.
Support Groups: Many people who have experienced similar struggles with doxycycline seek out online communities and support groups. These groups offer a platform to share experiences, find empathy, and gain insights from others who have faced similar battles.
Alternative Treatments: If doxycycline ruined my life led to long-term complications, your doctor may suggest alternative treatments or therapies to address the underlying health condition that prompted the prescription. This could involve different antibiotics or entirely different approaches, such as natural remedies or lifestyle changes.
Moving Forward: How to Protect Yourself in the Future
For those who have been negatively impacted by doxycycline, it’s essential to be informed and proactive about future treatment options. Here are a few tips for ensuring your health is better protected moving forward:
Read Medication Information: Always carefully review the potential side effects of any medication prescribed to you. Ask your doctor about possible alternatives and weigh the benefits and risks.
Report Adverse Effects: If you experience severe side effects from any medication, including doxycycline, report it to your doctor and the appropriate health authorities. Your experience could help others who may be going through the same thing.
Seek Second Opinions: If you feel that a prescribed treatment is negatively affecting your life, don’t hesitate to seek a second opinion from another healthcare professional. There are often multiple approaches to managing health conditions...
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phawareglobal ¡ 3 months ago
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Maria Morais - phawareÂŽ interview 490
Maria Morias, a registered nurse from Canada, shares her journey of managing multiple autoimmune diseases, including her recent diagnosis of pulmonary arterial hypertension. Previously dealing with scleroderma, Raynaud's phenomenon, and a rare liver disease leading to a liver transplant, Maria's ongoing symptoms of shortness of breath were eventually linked to pulmonary hypertension. Her story reflects on the psychological impact of chronic illness and the empowerment gained from community support and self-advocacy.
My name is Maria Morias and I live just outside of Toronto Ontario in Canada. I'm 54 years old and I’m newly diagnosed with pulmonary arterial hypertension. I have other autoimmune diseases. So, to sort have another disease added to my list has been overwhelming to understand, but also it's given me an answer to my shortness of breath.
My pulmonary hypertension is considered Group 1, associated with scleroderma. I do have mixed connective tissue disease. I've been seeing a rheumatologist for a number of years. In my early 20s, I was first diagnosed with Raynaud's phenomenon and circulation issues of my hands and feet that have been severe throughout my life course.
Then, in 2018, got diagnosed with a major rare liver disease, autoimmune rare liver disease called primary biliary cholangitis. I developed several severe symptoms of fatigue, itchiness, brain fog, and shortness of breath. So, the shortness of breath I sort of figured, at that time, was due to ascites and a massive fluid buildup in my abdomen, where towards the end of my liver disease, just pre transplant, my liver became cirrhotic and not effective in what it was needing to do. So, fluid is backing up into my abdomen. I'd gain about 20 pounds a week, go in on a Friday morning and have fluid drained, 10 liters of fluid drained. I thought there was a lot of compression on the diaphragm causing a lot of shortness of breath.
Pulmonary hypertension was never on the radar of any of my physicians, my hepatologist, my rheumatologist. Post liver transplant in 2021, I started to recover. That was a pretty intense recovery of regaining my energy and short walks, but I was still having severe shortness of breath. Slowly along the way, I had the respiratory sort of check out with a six-minute walk. I’ve been doing that every six months with a respirologist and pulmonary function test.
It wasn't until last probably December of 2023, my rheumatologist said, "Let's do some more testing." I did have interstitial lung disease as a general diagnosis from the respirologist, but this rheumatologist thought, "Let's check some other things." So he sent me for an echocardiogram, which I thought, "Well, how does this work?" The rheumatologist looking after respirologists sort of work. It was a good thing, right? So, never discount somebody's professional opinion as an option. Of course, I wanted to inform my respirologist and he said, "Sure, no problem." So good thing that there wasn't any territorial or issues there.
My pressures came back pretty high on echo. So, that led to sort of the next investigation. Then, I was referred to a respirologist that actually deals more, and specifically with pulmonary hypertension. That was earlier this year in 2024, to then go in for the gamut of testing. So, I started off with a sleep study and I thought, "Well, what does a sleep study really have to do with my shortness of breath?" 
I am a registered nurse. I work in public health. I've been a nurse for over 32 years, but more from a health promotion angle. So, it's kind of ironic that I'm on the other end lately as that patient and trying to advocate for my own health. It's really important, right, to navigate through the system, to understand the various healthcare provider roles and where we sit as a patient, how you're feeling, what you're feeling, all your appointments and putting everything together. It's quite overwhelming even with someone that can have ownership over your own health and control. However, you sort of lose that control when you leave it to others to kind of put your story together of coming up with what you really have.
I did go for the sleep apnea test, and it was about, well, if you feel more rested then you're better able to cope with your day. So, there was some mild apnea with about seven episodes per hour. But then when I went into REM, it was 24 episodes per hour. I thought, "Okay, so there might be something there." I have not progressed yet to use a PAP machine, so that's kind of on my radar of consulting with others to see if I really need to invest in that or not. Then, I went for a bubble echocardiogram, which was pretty interesting to see these little effervescent bubbles go through my heart. I was watching the screen just out of curiosity. It did show that I did have a small hole in my heart. Apparently, that's been there since birth. I said, "Well, is that the problem of my shortness of breath?" The respirologist said, "Well, you've lived with it for 54 years, so that probably is not the problem."
Then, the next sort of definitive exam was the heart catheterization, which sounded pretty scary, right? Having a tube put in right through to your heart can be very scary. The image of something touching your heart, what could happen. So again, went in. It was very simple. I think I was on a relaxation sort of medication. I wasn't put under. It was quick. There we had it, I think it was 30 milligrams of mercury. Certainly I think the cutoff is in the 20s. I’ve now started on a couple of medications. We had to go through a lot of insurance hoops to get that approved. Thankfully, for the Toronto UHN Hospital, they have patient navigation mechanisms that made it very easy. On the back end, they did all the paperwork. Then following that, it was kind of a leveling up, see if I had any major side effects that they listed off, swelling, some discomfort, some cramps in the legs. I had a little bit of that, but then tolerated it. Now, just a couple of weeks ago, have added an additional medication. I still have yet to feel any sort of changes. I understand that it could be six months to a year with a repeat of the heart catheterization. 
Having a diagnosis is important because then you ask, "Well, how did this happen? Why did it happen?" Leading it all back to, in my case, the autoimmune and scleroderma. Scleroderma was always something that was kind of query on my medical record. I said, "Well, how does that express itself? What am I going to see over the years?" Here it is, the starts of that as well as the interstitial lung disease. I have some start of kidney disease, as well. Also, autoimmune. I'm at stage 3A, which there are five stages, so I still have room. But knowing that how quickly my liver disease progressed to be needing a liver transplant, of course one of the things that goes through my mind is lung transplant. I try to sort of keep in check with that and take one day at a time. 
Right now, I'm very, very early in the diagnosis, second, third month in. I’m reading a lot, I connected with the Pulmonary Hypertension Association of Canada to get credible information and to start to connect with people that are also experiencing it. I’m in Facebook groups and just learning. One of the things that I do with my liver disease is I belong to the Canadian PBC Society, and I do a lot of patient advocacy there. I'm actually the VP patient advocacy. It is a totally volunteer organization across Canada. I have met some really wonderful people, lots of great peer patients. I do a lot of mentoring. I'm hoping maybe I can explore some opportunities into the pulmonary hypertension world and learn for myself and help each other sort of cope with all our uniqueness of all these rare diseases.
As a nurse, one of the things that I always keep in mind is this psychological component of disease and healthcare challenges. Being in the nursing role, you have the resources, you have the referrals, you have the connections. But then finding myself in a patient role, it's very much different, because it's being done to you and upon you. What I found is that I had to bring my voice forward and have my symptoms be heard. A symptom like fatigue is something that is easily described by a mother, a working mother, children, balancing work life care provider of parents, multiple things. We're always tired. We're a society that's tired because we're doing it to ourselves. Technology makes things easier. Therefore, we do more.
To really be as a patient describing what that tiredness is and how that affects the quality of life, but also then having it tied to an actual diagnosis and understanding that, I think it is a totally different situation being a patient than actually nursing that patient.
Having a liver transplant for my situation, I still have PBC, primary biliary cholangitis, which is a rare autoimmune disease that affects the small bile ducts of the liver, that can lead to cirrhosis. It's rare in this population group of PBC patients. There are several stages. I unfortunately was part of the less than 30% of patients that ended up with end-stage liver disease. Having said that, it does not take away my PBC. I still live with PBC. It just says that I now have a new liver that my body will live with and eventually may, could develop cirrhosis again. My autoimmune could attack this new liver.
However, I'm now 54, so by the time it attacks my liver again, if it does at all, I'll be that much older or not here. It doesn't preclude that I need to be taking care of myself, watching what I eat, my quality of life. I have a lot of medications to maintain the quality of my liver and to prevent that cirrhosis from happening. Whereas I probably lived with the disease without knowing, because that's a lot of patients do. By the time you get diagnosed, it's because something is off. Typically, your liver enzymes, but that's something we don't test daily. The fact is, I still have PBC as that autoimmune liver disease, which may or may not complicate other autoimmune disorders that are evolving in my body, which pulmonary hypertension being that example.
Having the lived experience of several autoimmune diseases, and a lot of them sort of rare, it's really helped me to be a better and broader healthcare practitioner. I always understood that we're complex human beings, that factors influence the way we are and how we take care of ourselves. But the added bonus or blessing out of my health issues in the last three years is that I'm now better positioned to speak forward for patients, to bring their voices, to amplify their voices, to listen to what the community of these diseases, those that are living with these autoimmune diseases, in particular, the rare ones, where to give voice, whether it's advocating for better treatment options, like in my PBC situation, being in situations with industry and pharmaceuticals and impacting on the kinds of science and treatments that are being thought about.
It's actually a really interesting time where a lot of pharmaceutical companies and physicians are really trying to hear and receive the end user or the patient perspective into their treatment. I'm fortunate enough to find myself in that healthcare system or the credibility of being a nurse. And having that lived experience, the doubling up effect, fortunate, unfortunate, has made me that much more confident. I feel like there's a calling in me to do this. That's why when I was diagnosed with pulmonary hypertension, I thought, "Well, I've done this in the liver world and the living organ donation world, why not?" It's the same sort of mechanisms, just a different disease.
My name is Maria Morais, and I'm aware that I'm rare.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware  Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] @phacanada
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lancedoncrimsonwings ¡ 6 months ago
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hi I think I know what might be your medical issue?
Long story short I am in a server where you talked about your “mystery” dysautonomia a while back (I was looking for another comment and saw that one) and I have the exact same symptoms, tho slightly milder at their worst. I have hyperadrenic POTS, a rare subtype of POTS where bp goes UP when triggered rather than down and which is caused by an overproduction of stress hormones in the body rather than solely a lack of vein strength or fluid production. I take propranolol for it, because hyperPOTS means chronic high blood pressure and the prop also helps w the heart rate. POTS is also oftentimes comorbid with nerve issues, especially hyperPOTS, since hyperPOTS can oftentimes be caused by stuff like damage to the brain stem. A lot of docs and cardiologists don’t know abt hyperpots cus it was super rare until covid hit, and I only got my diagnosis after seeking out a specialist bc 8 doctors and 2 ER trips had everyone scratching their heads. I’d be fine then I’d stand up and my bp would hit 170/100 and my HR would be 130. I’m sorry you’re dealing with medical issues and sorry for just dropping this in your inbox but I KNOW how scary and frustrating these situations can be. Hopefully this points you in the right direction??? Idk I’m no medical professional but that sounds like what I have.
Hi Anon!
I am personally grateful you did reach out, but I do have to put a statement here that I don't want people to reach out with unsolicited medical advice, please ask if its ok first!
I am happy to openly talk about my disabilities, BUT NOT EVERY DISABLED PERSON IS.
In my case, due to medical gaslighting I have medical PTSD, and sometimes even without it when people give unsolicited advice it can feel like I'm being told I'm not trying hard enough. (In reality, I'm on the losing end of the postcode lottery with a severely underfunded NHS and no ability to go private, with doctors that do not listen or care, whilst struggling alone against these debilitating and life altering symptoms.)
I do not remotely think you are doing that, Anon, and again I'm grateful for your ask, but such is the way I have to put a disclaimer up.
With that out of the way!
I have suspected HyperPOTs for a while, sadly my doctors have no interest in exploring further, they won't do the tests, they won't test my cortisol, they won't look into it, and given they have labelled me histrionic in the past I can't risk pushing more than I have.
I have tried propranolol in the past and sadly didn't get on with it, due to comorbidities, but have general sinus tachycardia (I meet criteria for IST, as my average HR over 24hrs is 99-110, anything over 90 is considered IST but I don't have an official diagnosis of it. My HR does come down to the 70-80s when asleep, but awake its usually over 100bpm. Case in point, its currently 137 and I'm only sat at the desk at work, alone, writing this)
The diagnosed they did give me were Vasovagal syncope and I have occasional episodes of SVT. (Documented) My official Dysautonomia diagnosis (Vasovagal Syncope aside) is "disorders of autonomic nervous system". I mean. Vague and nondescript as it is, it's fairly accurate I suppose.
High cortisol would make sense, given my cPTSD, or some form of adrenal fatigue in general. I do also have MECFS, ADHD, and we suspect EDs- all VERY commonly comorbid conditions with Dysautonomia in general. If I do indeed have Ehlers Danlos syndrome, (in referral stage atm) then this could be the overall cause, connective tissue disease resulting in a general brainstem dysfunction. (Which would explain the nerve problems, the numbness, sporadic muscle weakness, the Non Epileptic Seizures, severe motion sickness, episodes mimic the signs of stroke- potentially silent migranes, etc etc etc etc...)
Causes are great to know, and I wish I had the luxury of even that, but I suppose in the end they still give me little to no hope of treatment given there isn't really any that I'm not already doing, they will never offer me anything else. So long as MS remains ruled out, I'll be happy enough to survive with the mediocrity I get from my doctors.
Hopefully I get some answers one day. I don't imagine I really will, though.
Dysautonomias are awful to deal with and I hope that yours is tolerable, Anon. May you have many low symptom days!
(Sorry if this rambling mess made no sense!)
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jodilin65 ¡ 9 months ago
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For the first time in 25 years, I LOVE my bed! I’ll never go back to foam or coil ever again. I’d consider an airbed if I couldn’t have a waterbed but never foam or coil. I wish I had thought to get one when we moved into our CH house.
We added more water and now it’s PERFECT! The sheets don’t bunch as much and it’s easier to change positions but still soft, like floating on a cloud. We both agreed not to add any more water because now they’re actually starting to look like tubes rather than these flat oblong things. There was hardly any room to burp the tubes before he closed them back up.
I didn’t realize it at the time but when I said they were 35 lb full, that was for a different brand and for tubes that run from side to side rather than from head to foot. These are about 50 or 60 pounds. The whole ensemble probably weighs about 400 pounds.
A new golf course was added; Venice, and it’s way cool. The course is very realistic and detailed and you can spend hours exploring every nook and cranny. We had fun riding the gondolas and going over and under bridges and whatnot. There were plenty of stores and cafes to browse through as well. Statues and waterfalls were scattered about.
The course itself is fun, too. The holes are challenging enough but not crazy challenging in any way like with the Lair series. Found half of the hidden balls so far but only a couple are pretty. Most of them are pretty dull-looking.
Back to being tired because I was up for 18 hours so I was glad my appointment was here at the house. The nurse called and asked if she could come by early. I said sure, and she arrived at 2:00. She was here for nearly an hour mostly asking me tons of questions. We went through my medical history and then she asked me short-term questions like if I’d recently experienced depression, anxiety, dizziness, fainting spells, etc. She took my blood pressure sitting down and standing up and of course it was high because it was one of those electronic cuffs I hate so much. She weighed me and listened to my heart and lungs and we went over my medications.
At one point we were talking about my ear and sleep disorder and it was funny because when I told her my ear was known as congenital “atresia” she looked it up on her phone and said all she was getting was alopecia. Lol, that’s because she was spelling it as atricia or something like that. I’m a little surprised she didn’t know how to spell it.
Not surprisingly, however, she’s never heard of the rare sleep disorder I have so I told her about it and she looked it up on her phone because we were talking about the two medications recently approved for it, one of which I won’t touch for fear of it causing the suicidal thoughts it can cause, and the one the insurance company won’t approve.
She said someone would call to discuss something called functional medicine. It’s funny too because she asked me to remember the words pen, light, and hamburger which I still remember yet twice she mentioned the name of this particular medicine and I couldn’t remember it till Tom did and told me what it was. He was sitting in the living room while we were in the kitchen, but he could hear everything.
I did tell her that my memory wasn’t what it used to be and even though it’s not a diagnostic tool, I took a quick online quiz last night that suggested I have mild dementia. I hope not! But it does run in my family. Anyway, the functional medicine people deal with things like sleep, menopause and hormonal issues. I told her I do have mild sleep apnea and a lot of fatigue. I don’t think it’s one culprit, though. The sleep disorder itself can cause fatigue since they always stress the importance of having a routine and a set schedule which I can’t have, of course. So sleep apnea, N24, and my age are all working against me.
We thought the funniest question she asked was if I ever had more than six drinks at once. Lol, I can’t imagine having more than two, and most of the time even that’s too much. When I drink it’s almost always just one glass of wine.
Another funny thing was that Tom was told that you know you’re getting old when you’re asked to draw a clock. She had me draw a clock with all its numbers and make hands saying it was 10 minutes after 11. He said this is to test to see if you’ve ever had a stroke. In one of the medical shows he watches, someone who had a stroke was asked to draw a clock and they put the first three numbers all on one side.
Anyway, we talked about past surgeries, and the fact that I’m up to date on mammograms and pap smears, and I also told her about the extensive heart testing I recently had.
She was very soft-spoken and the fucking dishwasher was running at the time. A part of me was tempted to jump up and open the door but I didn’t. I wouldn’t have run the thing if I knew she was going to come early. I was a little concerned there would be distracting barking and motorcycle revving but there wasn’t.
The only annoyance is up in the sky as usual. It’s been bad again with big planes, small planes, and helicopters. Can’t even go 5 or 10 minutes without hearing something up there so I run air cleaners or nature sounds to drown it out.
I don’t remember what I dreamed about last night but it seems the dreams were pretty neutral. Nothing good or bad. There’s no doubt that if I have nightmares, it’s a definite sign of trouble to come. If it wasn’t in such a bad way, I would be thrilled and feeling so gifted and lucky to be so psychic and have such a good accuracy rate but because this is anything but a gift, I definitely don’t feel lucky at all. All it does is prolong my misery, knowing something bad is coming and being unable to quit worrying and wondering what it might be until it happens.
She asked about living wills and DNRs, and we don’t care about wills since we don’t have any kids but I would still like to have a DNR on me. She said I could ask Rhonda about that. Yeah, I’m putting together a list of things to discuss with her when I see her in June. I told Tom that if I had Galileo still, I could get answers in minutes. “Yeah, you could get a different answer for the different doctors that responded,” he said.
He has a point there. That was the only thing I didn’t like about them.
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bandofchimeras ¡ 11 months ago
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Capricorn rising blues:
People always end up coming at me funny about some shit after hanging out a few times. Like babe I do not know you?? that takes years?? I'm not taking correction & direction from you, and frankly when I want advice I ask for it explicitly, after it's given consider it, then do what makes sense to me. I only follow orders from people who I respect deeply, who have proven competence, and I've decided to follow. Which is so extremely rare.
My new friend even noticed in grocery stores or in social settings people will treat me like a punk or as if I'm dangerous and need to be checked. Even the people that claim to love me or are straight up obsessed, are so highly critical or judgmental of my creative attempts or attempts at conversation.
I've finally parsed out that this is a Saturnian problem, and likely because I communicate/mask in a way that presents as authoritative, or interrogative, and come across as standoffish.
People see me as a challenge to the existing authority bc I own my own experience and experience it intensely. They then project that I think I'm better than them or entitled, or trying to take control. Sometimes this might be fair, but sometimes I'm really just Fatigued or unsure of myself and asking questions or being practical minded.
The trouble with being perceived as Cool and Authorizative is then when my genuine uncertainty, whimsy or naivete comes out it's repulsive or angering or confusing. I get treated like an uppity little kid, or people get hurt I don't want them....depending on their relationship with power and authority.
To counter this, I've tried to lead with my vulnerabilities, weaknesses, etc. We are also technically plural so this can mean letting a little front. But then people tend to see me as a Baby to care for who.....again. Needs correction.
Exhausting. I've literally lost housing, friends, lovers, and family connections over this. Some of it comes down to my own genuine behaviors, I can be pretty controlling or not check in on other people's needs & boundaries. But it's not because I don't/won't respect them, it's because my own experience is HUGE and I'm doing my best to manage this complex system or oftentimes hide and tone it down. In order to hear you and honor your needs, I need you to be extremely clear and centered in your own experience.
Astrology is the only lense that actually has helped understand this bc I observed myself acting a similar way to other ppl with significant Capricorn placements in houses of identity. Specifically romantically. It's Daddy issues or like, generational discipline issues.
And I tend to feel bad about analyzing myself in this way but when it's such a nasty long-term pattern it helps to have a framework. Especially because generationally we are all dealing with paternalism, anti-child prejudice, and dynamics that are largely invisible but run whole systems.
We do not actually live in a world that values sovereignty/independence but an illusion of it. "do what you wanna do" but only within a few accepted lanes preordained for you.
My natural existence just happens to challenge these orientations a little more than some folks. So I've been repeatedly punished for literally existing, especially growing up Catholic which is so so so hierarchical and inverts the self. And developed a conclusion I shouldn't exist. Which is where the fucking "mental illness" comes from.
When truly I just need a big enough space to flourish, interpersonally and physically, and be in community with others who culturally vibe that way.
Could also deep dive into Slavic heritage, Eastern Europeans, the legacy of indigeneity in white colonizers & immigrants & children's Liberation & land sovereignty but we shall save that for another post.
Anyways it's always a good day to check your projections on your Capricorn friends. Thanks.
If Palestine has proven anything it's that the current evil world is hellbent on destroying what is most traditional & beautiful. Being targeted for destruction means nothing about anyone's worth. What's needed is defenses and recognition and standing up to this fucking horrific out of control Bully Black Hole we have collectively allowed, aided and abetted into consuming the earth.
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