#but! I do have a doctor's appointment for that + the chronic cough I've had later this week

[if-loki-was-a-fox]

hhhhhh brain-bad has been seeping back in lately, starting to suspect I might not have as few long-covid issues as previously assumed -_-

[brckensocietyarch]

so i've decided to make this post as like a long explanation for what's going on with me at the moment. those who've known me a while might know bits and pieces or all of it but i'm sure many people don't know. now, don't feel like you have to read this, but if you want to have some understanding about what's going on with me this'll explain it. (if you ask what's wrong with me, etc, I'll probably link you to this post so i don't have to explain it over and over again. reminder: this is a long post.

so, for starters before i get to the big issue, before it started playing up again i was dealing with random fatigue and drops in blood pressure, so i did a halter monitor and am finding out next week if it's post-spicy cough pots or something else. (this was why i was worn down at the start of the year and still had some fatigue before this.)

now, backstory, back in 2015 i was diagnosed with a disorder called iih (intracranial idiopathic hypertension), a brain disorder that means i overproduce cerebral spinal fluid, (along with a lot of other things - it can legit mimic a brain tumor- fun). at that time i was put on a medication called diamox which pretty much helped keep the iih down to a point, (i had to up it multiple times because for some reason my iih liked getting worse at random times). in 2020 we worked out one of the reasons for the random increase, tss (transverse sinus stenosis) meaning the big veins at the back of my head had a weak spot which caused fluid to build up which then in turn caused the vein to be crushed shut. by this time diamox had fucked with my body a lot (it's likely the cause of my fibro and is the reason my teeth have turned to shit). so, to fix the issue i was given a stent to help with the tss. this was meant to be my hail mary and make life easier. a side note: iih has caused be to have chronic migraines(which i'm now taking injections for), a chronic daily headache that doesn't respond to treatment and a slew of other things. if left untreated? it can cause blindness and even death (fun). the reason i got diagnosed in 2015 was because i went to an eye doctor with vision issues and it turned out my optic was swelling. so, fast forward to last year, we found out that my pressure where going up, again, and causing the vein my stent was in to occlude(close) around the stent, we also found that the second transverse vein was also closing. now, a fun little thing that can help for a very short period is having an lp (lumbar puncture), i've had many (and many have failed, sigh), last year they got 40ml from my back and thankfully the vein reopened. we know that I'll need to extend my stent and get one in the other vein but there are complications that we need to fix before i can get that surgery (which after a year have only gotten worse, not better). they knew we had to work something out but i'm a VERY complicated case. so for the past year it's kind of just been "we'll monitor and go from there". welp, the monitoring appointments i had this month showed my optic nerve is swelling again and the pressure is up. so, i've got to do the one thing i didn't want to do, return to taking diamox. to list a few of the side effects i'm already getting after three days of taking them: extreme fatigue, tingling in my feet, dehydration and making carbonated beverages taste like drinking literal acid... (that's legit just the starter ones). so yeah, fun.... that's what i've been dealing with (and that's just based around this disorder, not all my other bullshit, lol.)

[little-bloodied-angel]

So my birthday is this Friday, and:

-I'm sick as a dog currently, can't see my doctor until tomorrow, and it may be covid, which would mean I'd have to be in isolation.

-In no small part thanks to my mother, I haven't hit my weight gain goal. I feel guilty but also just look awful in general, and I'm weak and in pain

-I look even worse because I've been sick and depressed during the relapse, so I haven't kept my eyebrows up after my last professional appointment, which was really difficult to do at home without equipment anyway and being nearly blind. And the appointment was in July anyway. I also haven't gotten my hair done like I usually do around my birthday. And I couldn't replace my gel nails because my mother keeps putting it off because she's a cheapskate, same as the eyebrows, so now one is broken and the rest are overgrown (I got them done in late August). There's no time to fix any of it even if I could pay for it because there's no way I can get the appointments. Even if I could, I can't call for those appointments until I'm tested negative for covid, and seeing the first point that's going to take a while

-Because dealing with my BDD and ED isn't enough, I got my period and I'll still have it on Friday, so I'm going to be super dysphoric. And only able to wear black clothes in case of stains. And not being able to take a nice bath either (can't use insertion object type sanitary products).

-My uncle/godfather is completely ignoring me

-My father has basically disappeared and hasn't mentioned my birthday once

-My mother is a piece of shit as ever and now she's taken to leaving me completely alone to go to her father's house despite me being actively sick now and not "just" disabled. Which means that I'm coughing my lungs up and with such a high fever I see double, and I still have to at minimum take care of the dog and feed myself. The last time I was walking the dog I got so dizzy because of the fever and general weakness that I almost split my head on the edge of the sidewalk but when I told her about that all she did was yell about me not being careful enough. The only times my birthday has been mentioned in the house at all is whenever I bring it up and she complains that I want everything to be about me and "ridiculously expensive things" like the nails. Btw she's still living off the money she gets both from my dad and from the government for having a disabled child and living in my house without paying rent or mortgage. So even if I was really asking for expensive things, that's my money.

-My only irl best friend dipped on me because she mixed up the dates related to an event that features one of her comics.

-Most of my online friends aren't talking to me either

-Something else that I'm really upset about but that I can't mention in a public post for more than one reason.

There's more stuff going on but these are just the recent developments as of like last month. It's like some force of the universe heard me complain about not wanting to turn 29 and also about how difficult it was going to be to celebrate and decided to make it outright impossible. Most of my birthdays have been pretty sad and lonely, especially lately, but man I suspect this one is going to take the cake. The only one that probably can't be topped is the one where I planned my super special 18th birthday for months and then I died during the party (coded during a seizure) because my chronic illness finally had it with me and suffered a steady decline ever since then.

It's really looking fucking great. Alone, looking horrid, being depressed, no party, no presents and no special food. Of all the things I wanted I am going to have literally zero.

And of course if I ever do make mention of being sad about this my mother becomes even more emotionally abusive than usual.

What's the damn point anymore?

[fancyrock]

I've seen a lot of people post about their incompetent doctors so I decided to share my own experience soo...

STORY 👏 TIME! 👏

Now, obviously as I'm chronically ill, I have plenty of doctors telling me all sorts of bullcrap, but trust me, this story is hilarious!

So one day I was about 16 and I was at school eating lunch with my friends under a tree. I had beans as a snack so I was eating them, but I had this special way of eating them: I popped the peas out of the pod and into my mouth, then ate the pod. As I was eating, one of my friends made me laugh as I was launching another pea into my mouth, and it got stuck in my throat (which made everyone laugh even more). It was all jokes and stuff until lunch ended and it was still stuck in my throat.

I decided to text my mum about the whole situation, and then decided to call a doctor nearby to book an appointment that afternoon (while in a bathroom stall and skipping out on 5th period). Now, that doctor I had never seen before, so I had no idea what he was like.

My grandma drove me up to the clinic and decided to come into the doctor's office with me (which in retrospect was a good idea). The clinic seemed more like someone's house rather than a professional healthcare environment, but I decided to continue with the signup process anyways. There was a ton of paperwork, pretty usual for going to a new doctor.

Anyways, me and my grandma went into this guy's office, and he asks what's the matter blah blah blah (now lets get to the juicy part!!)

"There's a pea stuck in my throat."

The doctor had a good hard look at me (/s) and said

"Is there any chance you're pregnant?"

(Now I know some 16 year olds do get pregnant, but seriously?)

"No? I'm a virgin."

"What medications do you take?"

"Antidepressants and birth control pills for my hormones."

"SO YOU ARE SEXUALLY ACTIVE!!!"

"No, it's for my hormones, I have a high risk of developing PCOS cause my mum has it."

And then later he said,

"You're overweight, lose some weight."

"Yes I know that," I replied, "I'm working on that with my GP."

My grandma was sitting next to me this whole time trying not to laugh out loud with all these ridiculous questions.

And then the doctor finally came to this conclusion:

"You have a lump in your throat due to your hormones, you don't actually have a pea in your throat." And then prescribed me for some bullshit medication I didn't need.

Once me and my grandma got the HELL out of there, we laughed our asses off the whole 2 minute drive home (and then laughed about it some more with my mum when we arrived). We ripped up the stupid prescription and Mum decided to call our usual clinic, and I got an appointment the next day. Thankfully the other doctor believed me and reassured us that it should dislodge itself soon but if it didn't, go to the hospital.

AND GUESS WHAT???

GUESS FUCKING WHAT???

The day after, I coughed the pea up!! It was all hard and white which was super gross but IT WAS THERE IN MY DAMN THROAT!!! My grandma suggested to send it to that other doctor, but I had already gotten rid of it.

Later that week, I was searching for this doctor for some information about him, and turns out HE HAD SO MANY ONE STAR REVIEWS IT WAS CRAZY!

Aaaaand last I ever heard of him is that HE GOT FIRED!!

Suck it, Dr. Whatever-the-fuck-your-name-was!

Moral of the story: always check reviews before going to a new doctor.

[thebibliosphere]

Hello Joy! Long time follower and I really enjoy your blog. I just wanted to hope into your asks bc i've had a very frustrating day of doctors appointments and even if you don't have any advice, i was just hoping to rant to someone who'd been around the block with elusive medical illnesses (though please dont feel obligated to respond to this at all), and i apologize in advance for an almost certain lack of coherence.

I've been dealing with quite a lot of doctors appointments over the years, from treating insomnia, my adhd, and depression and anxiety, but long story short we have discovered 2 years ago that I have low b12. I have also been dealing with a chronic cough for 2.5 years. Unfortunately, oral supplements did not work for the b12 and i had to get monthly injections, which stopped when the pandemic hit and, despite doing for 4 months, didnt bring my levels up to normal anyway.

I recently restarted the injections, but my doctor will not approve my request to have more frequent injections, which i think i need, because its not fatally low (its at a 170 based on recent bloodwork). I finally saw a respirologist for my cough, and she has no idea what the cause of it is, even suggested that its psychsomatic, and put me on a different inhaler that i tried before (ive tried a million treatments for it, from post nasal drip meds to ppis for acid reflux to allergy meds, and the inhaler is the only thing that helped a little).

I've gained 20-25 pounds in the past 2 months, when ive been the same weight since i was a teenager (im 22), but my bloodwork continuously come back normal for everything but b12 and vitamin d, so my doctor also has no explanation for that (including normal tsh, and the last time i brought up testing other thyroid factors the doctor told me they dont do that and honestly made me feel silly for asking. Though, granted, my current doctor is a different one). I'm going insane because of how tired i am all the time, and the fact that I feel like a hypochondriac bc all my tests are always normal, and my doctor is only available for appointment once a month.

Sorry for the long block of text, i just feel, when looking at your blog, a sense of hope that eventually i'll have answers and you're just really great. ❤ i hope you had a really good day today ❤

Get a new doctor! Get a new doctor right now!

When you dip below 250 is when you can start to experience chronic fatigue, mood disorders and worsening cognitive function.

170 is when you're on the cusp of things getting seriously bad and depending on your homocysteine levels can start to cause pain and nerve damage. This is also when my hematologist estimates I started to sustain prolonged damage to my nervous system. This was also when I started experiencing the symptoms of early onset dementia.

140 is when my iron and folate levels tanked suddenly and I was so symptomatic my (then) new doctor was worried I had cancer and rushed me through seeing seven specialists in a week. The same day as seeing the hematologist it dipped below 110 and I started hemolyzing and went into medical crisis as my kidneys and heart started to struggle. I owe that hematologist and his team my life.

The good news is the shots you are getting right now are keeping you stable, but your doctor should NOT be waiting for your levels to hit crisis mode to resolve this issue. Please do not give up on this, you deserve better treatment.

Also, what kind of supplements are you taking?

I don't absorb Cyanocobalamin well through my gut, which is the most common type of oral supplement prescribed. What I do absorb through the gut is Methylcobalamin, so if you haven't tried that yet, it might be worth a shot to try and help you manage your levels on your own. Same with folic acid, I don't absorb it for shit, but when I switch to a methylfolate supplement, my numbers start to climb*. If you have tried this and it's been ineffective, then I'm going to emphasize that you need to push your doctor to increase your number of shots to get your levels up because what you are living with is not an acceptable quality of life, and I am so sorry :(

I hope you are able to rest and have better days in store soon. Take care, and if you want to talk about b12 or stuff, hit me up.

---

*Before anyone asks, yeah, I'm aware of the MTHFR gene mutation. I just can't test for it because the procedure is considered to be "investigational" and neither my geneticist nor my insurance wants to run it and I don't want to sell my data to a gene company lol.

[dimonds456]

I may have not always been honest Though now I speak in earnest To live, to die, is a natural cycle Though dying young has always hurt us.

My body stops and stutters The cogs rusty and battered There has been no replacement For my machines predicament.

I shake and stumble and cough And fall to a floor not so soft This blood on my hands is my own From this internal battle I've been thrown

I wave my flag high and stand my ground Though the fights namesake is underground For I fight below the dirt under the Graves Of those who fought this war and never gave.

Blood, sweat, and tears have all been shed The blood on me knee as I kissed pavement Sweat as I tried to lift a plate over my head All I've yet to shed are teads, but my soul cries instead.

I wave my flag high though my arm grows tired And the thing keeping it up is a very small fire This flame of fame and courage and valor Determination keeps me tough and towered.

I see you, Death, with hand outstreched But I think it'd be pretty far fetched To think I would take it so easily If so I'd have gone with you early.

As the Valkyries fly and before the sun dies I will hold my ground. I see you, my Graves, with distance falling. No surrender can be found.

This hardened potion in my veins Perseverance through the pains I will keep fighting until the end No matter how much my own body wants me dead.

I'm not usually one to focus on the negative side of things, but Graves is kicking my ass. I'm becoming more and more convinced it's gonna win.

If you don't know, Graves Disease is a chronic illness I've had for years. It means my metabolism doesn't exist, my heart rate is always too high, I'm constantly off balance, my hands shake, and I cant exercise very long or I'll hyperventilate or faint.

I don't have a doctor's appointment for another month.

If I die, I want to let you all know that I love everyone of you. I love Tumblr, I love my friends, and I love the huge amount of support I've gotten. I will never take that for granted.

I've always tried to be nice, kind, supportive, and loving. If I ever failed this, I am so sorry. That was never my intention.

Thank you to @/joyflameball for pulling me from the dark and being my partner in crime for these past few months. I wish I could do more for you.

Thank you to @/artsycooky13 for giving me so much inspiration and being such a good friend. I'll never forget you.

Thank you to @/hugthesquids for sticking it out and being the voice of reason when the world came crashing down, who was able to show me the way several times.

Thank you to @/doodlegirl for being one of my best mutuals. Your support has had an impact on me I'll never forget.

Thank you to @/mudwingprince for also being a great mutual. Your support has meant so much. You were the first person to ever draw Follychromatic fanart, and I cherish it every day.

Thank you @/mouseinabucket for your unconditional support and love when I needed it the most.

Thank you @/axolotluv for being a wonderful mutual and friend for a short time. I wish we'd gotten to know each other better.

Thank you to my mom, who may not have completely understood me, but tried her hardest to support me anyway.

Thank you to my brother, who I love more than life itself. I'm sorry if I wasn't there enough, or if I didn't give you the support you needed. If I live, you better believe I'm going to fix that.

Thank you to everyone ever that has supported me and my wild dreams. Each positive word has only boosted me up, pulling me from the dark and adding to my reasons to push on.

I'm not done fighting- not yet. But I fear that fight may be nearing it's climax. When that happens, I'll know I have a ton many amazing people behind me. You guys give me courage.

Either I live with Graves, or I live in a grave. Well see what happens.

Come on out, Graves, and FIGHT.

[rosetheravaged]

[[OOC: Update! I'll be putting details and such below a cut. TL;DR version: I've run into a bunch of medical things at once and need some time to get back on my feet. Love you all! Details below cut.]]

Edit: apparently I can't do a read more on mobile. I'll try to fix this later when I have therapy on my computer.

[[MORE]]

These last 2 and a half months have just clocked me up side the head real good. In early December I ended up in the ER for severe abdominal pain. While there, they didn't find anything on imaging, but took a bunch of blood work. This blood work showed that I'm diabetic. Surprise! No warning! That's a lot to throw on anyone's plate. The blood work also showed that my liver is slowly getting worse. I have fatty liver disease and my enzyme levels were not good.

So for the rest of December I was dealing with follow ups for the stomach issues and diabetes appointments. One of the medications they prescribed to get my glucose under control exacerbated my stomach issues, so that had to be switched for the extended release which doesn't have as many side effects. But my insurance will only cover one specific type of the generic of this medication and I ran into that wall. That's been sorted now and now my stomach is back to how it was before the medication and unresolved.

January comes around and I get sick. Headache, mild fever, coughing... I get tested for the big C twice. That's not it. Doc determines it was a sinus infection that turned into a chest cold. Takes them 3 weeks to prescribe me some antibiotics. Finally manage to kick that like a week ago.

Then last Friday, I woke up and my knee was extremely painful. I hadn't injured it. I ice and elevate and it gets a little better Saturday and Sunday. Monday I go see my doctor. She gives me some leg exercises to do and seems to think my pain is muscular even though I'm telling her that the pain and limited range of motion are in my joint itself. I follow her advice, get some topical cream and ice and elevate the rest of the day.

Tuesday, I go help my grandma, get home and my leg is now swollen and bruising from mid thigh to my calf. I have a history of blood clots. So I call my doctor's office and the triage nurse says I should go to the ER. So, I do. They check my blood and do an xray and ultrasound to check my veins and arteries in my leg. Nothing abnormal on either imaging. Blood work shows my hemoglobin to be a bit low and my uric acid to be a bit high.

ER doc explains it could be a bleed into my joint because of the blood thinners I'm on, but there was no evidence of that on the xray, or gout or pseudogout. Give me a prescription for a steroid and sends me on my way since it's non-emergent. Yesterday I follow up with my doctor's office. They're able to get me in to see a Physician's Assistant that I haven't seen before.

This appointment was a roller coaster. First I see the PA student, and she's wonderful and compassionate as I explain that the swelling is slightly less than Tuesday, but my pain is higher. I ask if there's anything we can do for pain relief that isn't a narcotic. She asks what's worked in the past for me, I reply with a name of a narcotic, but stress I don't want that or any other narcotic. She says she will go discuss with the PA what the options are. The PA comes back, the student does not. This PA was so dismissive of my pain and jumps right to, "I'm just gonna refer you to physical therapy." I ask about pain relief. She tells me to double the amount of tylenol I'm taking. Remember when I said my liver wasn't doing great? I'm taking slightly less than the dose several doctors have said is safe for me to take. Doubling what I'm taking would put me far over that limit. I explain to her that I have a compromised liver and she says it doesn't matter and refuses to give me anything else for the pain.

That's where I sit now. Still having stomach issues and pain. My back is getting worse (but that's a chronic thing for over a decade now). My leg is still swollen and bruised. And y'all I'm tired. I just don't have the capacity to do much more than the necessities for myself right now. I hope to be back sooner than later, but I need to take a medical hiatus right now. Love you all!