#(That's when my follow up appt is too so my doc will actually show me the MRI images and explain in Doctor Speak)

[shima-draws]

Also just got done with my second (2nd) MRI and found out it’s not NEARLY as expensive as I thought it’d be!! HALLELUJAH

[vizthedatum]

Did you know that in the spring/summer of 2020, I told my ex/spouse I was going on strike? This was the google doc that I created (last edited June 30, 2020).

Strike

I will not be asking Jon for things.

I will not do household chores unless I absolutely need to in order to do something (feed myself, cook something, get around something).

Things that make Pri sad (and wants Jon to address):

I will be urging Jon to take care of themselves but I will back off a bit.

allergy meds

keeping track of headaches and migraines

eating regularly

eating fruits and vegetables

getting enough vitamins and minerals in diet

taking care of eyes, body, and teeth (which includes doing at-home preventative care and going in for regular check-ups at the respective doctors)

Teeth Routine (morning and night): brush teeth for 2 minutes paying attention to the four quadrants of the mouth), floss every tooth, mouthwash (maybe the antibacterial one that I use)

Taking care of cavities (making appts to get them filled in)

Not putting off health appointments for months

self-care such as taking care of hair and body (e.g., showers)

Often, Jon will show Pri things when she’s in the middle of doing something, and Pri complies and sees the thing. When Pri tries to do the same thing, she gets met with hostility. And then she waits, and Jon gets busy with something else. :( 

DEMANDS

Jon adds to this document! I want Jon to read this!

Jon is in charge of the storage stuff and getting rid of broken furniture (dresser).

I want the table (the one that we brought over from my place) to actually be MY workstation and not just Jon’s second workstation. I know Jon set it up to be mine, but I need things to be more comfy (a nice chair, removal of Jon’s stuff).

I want Jon to help me out even when I’m not visually/observably sick.  I want Jon to anticipate my needs. I want Jon to observe me and help me stay on track with my stuff too. 

I want Jon to have structured date-like activities with me: walks, eating food together, talking together, cuddling, playing games, having sex, etc.

My demands are that we come up with an equitable list of tasks for both of us that we both follow up on in a timely manner. - We can put it on the whiteboard

 I also want a regular routine or some guarantees that Jon will take care of themselves. I also want more attention and I want Jon to do things for me sometimes (especially when I’m ill, but also when I’m not ill).

--

Reader, they did not collaborate with me in a sufficient manner. (And I realize that some of my demands weren't the healthiest but I was so so so unhappy with the dynamic)

[vtforpedro]

health update - long post

hi everyone! I think it's been a month and a half or so since my last update I saw a rheumatologist, had MRIs done, and got my results back from my hematologist SO cancer: still undetectable in my blood, check every 3 months and hope it doesn't show up for a long time lol \o/ I don't think I can say I'm in remission until a certain amount of time has passed but I hope I can say that one day MRIs: actually show some possible improvement with the chiari and spinal fluid flow? and if there IS improvement (like the radiologist who wrote the report had the MRI from a year ago as reference and his findings were all 'normal' compared to april 2020, but it was hard to get an answer out of my neurologist and neurosurgeon if there was solid evidence of physical improvement). but yeah IF there's improvement, that is highly indicative of IIH because my neurosurgeon told me when people with IIH lose weight, the chiari often corrects itself because there's less pressure and more room in the skull for the cerebellar tonsils to be in a normal position. regular chiari that you're born with doesn't do that lol so if there IS improvement with weight loss, then yeah, IIH. even if they don't wanna put in the diagnostic code for it without a lumbar puncture sigh lol I hate typing this because I'm so paranoid it'll all go to shit if I talk about it, but there have been improvements as I've lost weight. I seem to have a couple weeks where my head isn't so severe, mostly manageable with a few awful days. then I'll have a few weeks of it being Really Really bad with a few not-so-awful days. which IIH can do this sort of 'remission' thing but considering it was like 24/7 with no breaks for a year I'd say this is moving in the direction I want it to completely changed my diet a handful of months ago and adjusting it still to be even healthier/more fulfilling. I started using the Noom app (paid sub version) cause it's so focused on psychology instead of 'dieting' and building habits that are sustainable in the long, long-term. I really love it so far. the routine of doing it at the same time every day has already made me feel better mentally about my weight loss journey despite my struggles with losing weight, I am officially down 20lbs \o/ they say for improving/curing IIH, you need to lose 10-20% of your body weight. well, 10% down! time to lose another 20, but I don't find it intimidating and I'm not dreading it. it's hard to have hope, especially on really bad weeks, but I'm taking it one day at a time. definitely not cured but I'm aiming for 40lbs more (so 60 altogether) and by then, maybe, just maybe.... rheumatologist/autoimmune disorder results: so I went to a rheum cause I got that positive autoimmune disorder blood test with the possibility of lupus or scleroderma. she said that she gets so many hematology patients because leukemia and lymphoma have blood antibodies, so it will almost always show up as positive on this antibody test and most people actually won't have an additional autoimmune disorder. I don't have a lot of symptoms of lupus or scleroderma according to her, so she told me don't worry about autoimmune disorders for three months. don't think about them. we'll repeat labs then and see what they say. so that's good news so far and I hope it remains that way 15%+ of the population will test positive on the same test without having any health issues, which I found interesting. and I asked since I already have an autoimmune disorder, tho it's endocrine versus rheumatic, if that would also trigger a positive result and she said yes it would! so yeah... I hope by late July I can still say I don't have an additional autoimmune disorder I see a gastroenterologist tomorrow for the bloating/abdominal pain and other stuff I've been having. I have a feeling I'll be given some antacids (or w/e they're called when it's prescription strength) and that will improve. but jfc I'm up to eight specialists now lol NINE doctors are following my health god it's such a shitty feeling especially when I can barely trust any of them. at

least they all believe me now, but it cost me my quality of life and mental health to even get to this point so I'm still feeling pretty fucking bitter and angry about it all you know what's really hard about completely changing my diet + starting new medications/supplements? for some reason at the beginning of all of this when I was experiencing repeated trauma at the ER, my brain developed a phobia of allergic reactions, despite the fact that I've never had one for food/medicine (I'm talking anaphylactic reactions). so now every single new thing I eat, every new med or supplement, I go through panic attacks for days on end thinking I'm going to die before it starts easing. also, anxiety makes your throat feel like it's closing up and that it's harder to breathe already so lmao fun times. I literally never thought about this in all my life and I never even experienced an allergic reaction to develop this intense fear, so you know. fuck doctors for putting me through this when it was all so unnecessary sigh anyway. still can't watch videos, tv, movies, read, bend over, walk for longer than 5 minutes, and can't talk for long either because it'll trigger a head episode. I'm terrified I won't be able to do these things ever again, but I'm still aiming for my goal weight no matter what and I know I can get there bouncing between misery and hopelessness, and slightly less misery and some hope right now, but I guess that's better than it's been for a year, right? sorry for rambling. I feel like a lot has gone on but I've also had the biggest gaps between doc appts in a while which is a relief just because I can't stand being in medical buildings or around doctors anymore completely vaccinated too, so that's another relief, but I'm wearing masks until americans get their heads out of their asses and we start seeing little to no community spread cause I am still immunocompromised. wouldn't it be nice if people like, idk, cared about each other ok sorry! I hope you're all well and healthy and safe. I love you very much and I'm grateful for your support, forever and always! <3

[psi-psina]

Hi. :) You don't know be but I've been following you for a little while now and since I saw your posts talking about Graves Disease I wanted to ask you about it. I'm a 19 yr old girl, and I was diagnosed with it a few months ago and started on PTU. I wanted to ask, what was your experience with doctors and medication like? You had to have your thyroid removed? I feel worried about how this is supposed to be managed long-term because my doctors can be quite dismissive. If you don't mind. :)

OH MY GOD

DEAR ANON PLEASE HEED THE FOLLOWING LEARN FROM MY MISTAKES

So this is my experience and for the LOVE OF GOD don’t let this happen to you.

I was diagnosed with graves disease at the age of 14, showing symptoms of fatigue, tremors in my hands, exophthalmos and a slight goitre. I was tested for sleep apnea before i was diagnosed. Once diagnosed, my mother took me to a naturopath rather than an endocrinologist (i was a child, i had no control over the situation PLEASE DON’T DO ANYTHING THIS STUPID) 😩. It didn’t go well. I was given a tincture of iodine and various herbs (including licorice :/), which i had to take for about 3 months. it did nothing for me and my symptoms steadily got worse until my mother had to take me back to the doctor. My blood work showed a significant worsening of my condition; my T3 & T4 were both far higher than they had been before.

I was put on Neo-Mercazole which I remained on periodically over the next 9 years. You cannot remain on thyroid suppressants indefinitely due to their nature and bastard side effects (expelling giant blood clots through your nose? horrific), which got gradually worse the longer I had to take them. I don’t know how your doctors are managing your PTU but be vigilant. You NEED to aim at getting in remission. I was monitored closely while taking NM over that first course, and then as my hormone levels returned to normal I was weened off it. I was okay for 2 years, and then relapsed when I was 17. I was put back on NM and monitored until my levels returned to “normal”, then I relapsed again when I was 20.

after this I remained on NM pretty much for the following 3 years, but it’s effectiveness started to wane and many of the diffuse symptoms (especially anxiety, palpitations, insomnia, tremors, goitre, exophthalmos etc) simply weren’t going away even when my blood work showed I was within a supposedly normal hormonal range, and I just slowly went downhill over those 3 years.

this is huge problem with regulating thyroid disorders like this, your hormones are measured only in your blood work but T3 and T4 are heavily protein-bound hormones, meaning it’s presence in your blood IS NOT always consistent with it’s presence in your other tissues, where it is able to accumulate (not indefinitely without detection, but enough to give you symptoms). Suppressants just didn’t work for me long-term. They couldn’t help my thyroid regulate my metabolism over an extended period of time, the thyroxine in my body just kept accumulating. Basically, the moment I relapsed when I was 17, I was fucked. I was not aware of this at the time, obviously. At the time I had absolutely no idea what was going on.

the events at the end of my Final Relapse that led up to my surgery were serendipitous and bizarre. I was travelling to Japan in the October (2013) for a few weeks (which i flat out should not have been doing lmao) and got an appointment with my doc because i needed to fill another script for NM before I left, because i was about to run out. So i went and got the script and then when I went to fill it at the pharmacy, I couldn’t get the NM. There was an international shortage of Neo-Mercazole and I was flying out of the country the literal next day and I couldn’t get any ANYWHERE. PTU was still available but I couldn’t get that with a script for NM either. So I had no medication for most of those three weeks.

When I got home I booked another appointment as soon as I could get one and went back to work. Got another blood test to see what was going on and finally got some PTU. A couple of days later I came down with a cold. My immune system was shot and I was struggling to do things like get out of bed and walk up stairs at this point so I called in sick to work on the monday because felt so ill, and made another doc appt for that afternoon because i needed a medical certificate.

I went in to the doctor expecting to walk out with a med certificate, and asked her about my bloodwork. She opened the bloodwork and looked at it, looked at me, then took my temperature and pulse and immediately called my endocrinologist. My T3 and T4 levels were so high they were not measurable, i was feverish and hazy and my resting heart rate was 160-170 bpm. She told me I needed to go straight to emergency because I was at risk of thyroid storm (at which point I just burst into tears lol) and she called ahead to the hospital to have me admitted immediately, and that was that. I was taken to the hospital and was monitored there for 4 days and given several medications to try to flush some of the excess thyroxine from my body to make it safe enough for them to cut my thyroid out, which happened four weeks later.

So aside from the more diffuse symptoms of anxiety, depression, insomnia, full body tremors, exhaustion, goitre and exophthalmos, I was admitted in emergency with acute symptoms like fever, tachycardia, chest pain, hypertension, muscle weakness, bloody diarrhea, peripheral edema and fuck knows what else. :/ None of these things really abated over the weeks leading up to the surgery, and I honestly can’t describe what it was like to wake up from it almost asymptomatic after dealing with these things for months and years. It was like waking up in a completely different body.

If you’re wondering how I could have let things get that bad, how i didn’t realise just how serious it was, you need to understand. You need to understand how gradually all of this happens, it built up over a period of years, and when you live with a chronic illness for that long you literally just get used to feeling like shit, so if something else shitty starts happening you’re already so tired it hardly even registers. It doesn’t strike you as particularly abnormal because it all becomes normal. That’s the most dangerous thing about it. Not to mention, the sicker you get with Graves, the less capable you are of assessing your own situation; the anxiety and exhaustion and insomnia and horrible hazy brain fog you’re in every single day make it completely impossible to think clearly.

SO THE MORAL OF THIS IS, for the love of God, be careful, and take it seriously. It is extremely serious. I did not take it seriously enough for years because I was young, active and otherwise healthy which gave me a threshold for tolerating it that was far too high. Don’t dismiss your symptoms, don’t let your doctors dismiss your symptoms, ESPECIALLY the mental symptoms. Be aware of all possible and potential symptoms so you can actually recognise them for what they are, along with all the potential side effects of PTU. 

Get blood work done EVERY THREE MONTHS. THREE MONTHS, not six, not twelve, every three months. Other thyroid disorders, you might be able to be a bit more chill about, graves you fucking cannot. You cannot.

Read and get as much information about this as you can. Heed how your diet is going to effect this, because like any endocrine disorder, it will.

Elaine Moore is useful. (Read the forums) This is useful. Reading patient forums about people’s experience with it and how they manage it is invaluable, it’s far better than reading blogs that are usually dogmatic and trying to sell you stuff. patient.info is also a good resource for information.

Make sure you have a good GP and ESPECIALLY a good endocrinologist who works WITH you. Most endo’s DO NOT specialise in thyroid disorders, most of them specialise in diabetes and only have a middling knowledge of thyroid issues. It’s absolutely crucial to find an endo who specialises in thyroid disorders. Find one, if you can. Otherwise just crowd source the information yourself, print it and take it to your doctors yourself. Because honestly, the cost of not doing that is just....not worth it.

This isn’t supposed to scare you or anything, it’s a god damn burden but there are plenty of people with Graves who achieve remission or find ways to manage it over long periods of time, it’s a highly individual disease. So I really hope you are able to do that. :) TAKE CARE OF YOURSELF.