#MALS

[horce-divorce]

hi, are you someone who is pained, chronically? well unfortunately i dont have any good news for you, but i did make a tumblr community for us chronic pain havers, if u wanna come hang out in my sweet blanket fort. metaphorically speaking. yes emotional pain absolutely counts 👍 join us, if you want to

[risingscorchingsuns]

hey guys! this isn’t kny related, but I need advice, and I have a wider audience on this blog compared to my main.

I have a doctor’s appointment tomorrow, for a specialist I’ve been waiting six months to see regarding my chronic illness. I’m really worried about it- to even get this appointment, we had to threaten to claim medical negligence because nobody would take me seriously enough to look at my case file. I’ve had doctors cancel appointments on me week-of because they didn’t mean to make them. I need this appointment to go well. I need to start taking steps towards the surgery to fix MALS, but i need doctors to take me seriously enough not to dismiss it as menstruation or a normal food intolerance. Im afraid they’ll look me over, then send me home with an ibuprofen and a $700 bill. Its happened before.

I’m bringing my cis male friend to pretend to be a relative of mine, and he’s going to tell the doctors he’s been very worried about me and made me come in. Does anyone have any other advice on how to get doctors to listen to you? Any advice is appreciated- i need this appointment to go well.

I know I may be overthinking this, but I’ve had bad experiences in the past, and I can’t spend another year begging professionals who are supposed to help me to even consider my pain. I just want to be prepared to self-advocate.

[a113cowgirl]

I had 3 doctors appointments in the last week AND a call/long conversation with my case manager/care plan manager, and she’s doing her damnest to get me back into palliative care. (For those who don’t know, palliative care is basically hospice for those who aren’t expected to die in the next 6 months.)

Looks like the specialists are finally starting to agree with me… I’m done with trying to find a cure, I’m exhausted from years of surgeries trying to fix the root problem/cause.

I just want to treat the symptoms and try to improve my quality of life as much as I can and focus on comfort and reliving suffering, rather than fighting so hard to fix everything and be cured. I just want to stop suffering so much.

This partially feels like “giving up,” and makes me sad… but the other part of me feels so much relief in finally giving up the fight. I just want to live the rest of my existence in as little pain as possible, and try to prevent more health crises-es and emergencies.

It’s been a lot of years of this… I’m ready to focus on being comfortable and getting my life back a bit. I’m finally coming to terms with that hard conversation a doctor had with me 8ish months ago about “accepting that I will always be disabled” and “coming to terms with a new normal.” At the time, I was so mad at him suggesting that… but now I’m realizing it may be more peaceful for me to go that route. I’m tired of constantly fighting it and spending so much time researching experimental surgeries and treatments to find a miracle cure. I just wanna focus on living.

[th3only-one]

She's slaying yall:D

[spoonfulofjesus]

No yeah, just go ahead and starve that organ, I probably didn't need it anyway. :/ [disappointed emoticon] Thanks

[allergictogravity]

*me noticing I have a high heart rate not knowing why

Me: why this time body? I’m sitting down? 🤨

Body: You dared to have dinner

Me: Oh for f***s sake…

[oliveasaltylife]

[malnutrition, food, medical diet, weight discussion]

My entire body hurts so bad today and I am so exhausted despite having like 10 hours of sleep. My body and nervous system are so overwhelmed from malnutrition on top of my usual complex chronic illness stuff and it is seriously difficult to come out of it. The intense fight or flight response that I’ve been in for months feels never ending and nothing has really been able to calm me down. I was always aware of physical effects of malnutrition, but my level or anxiety is higher than I’ve ever experienced and my dissociation threshold feels nonexistent. And the worst part is knowing that food will help, but if I overdo it I’ll end up in the hospital again with significantly worse symptoms.

I’ve unintentionally lost so much weight over the past few months because I haven’t been able to eat normally and I don’t tolerate my Soylent meal replacement shakes anymore. It’s quite scary watching my body change like it is and that definitely confounds my anxiety. I’m really glad my pcp was able to get me a prescription for a meal replacement shake because I really don’t want a feeding tube and am doing everything that I can to avoid one. I just really miss food and making meals, which is making my medical diet more difficult. (It helps knowing I absolutely can not tolerate the pizza I really want, but it’s just hard restricting myself so much).

And it’s so fucking difficult to actually hydrate myself and stay hydrated even *with* IV hydration. I am really so miserable and in so much pain and so nauseous.

[bbqbastard]

Döner Kebab met zwarte looksaus maken op de BBQ

[horce-divorce]

haha ughghh you know its a bad pain day when im like "UGH i have already done like 4 dabs and smoked 2 bowls what gives. why am i still fucked." and then i realize that was like 3-4 hours ago which means I need to smoke an additional 4 dabs and 2 bowls to get me thru to to dinnertime, when I will- once again- you guessed it- need yet another several dabs and bowls to survive the pain of eating anything (and then probably once more before bed, in addition to the meds I take for sleep). insane shit. thank you weed for my life but oh my god.

bel and i both smoke this much btw and we both very consistently smoke a little under an oz per month, usually. that's a maintenance amount. during a bad flare its much more. i know ppl who dont even have chronic pain who smoke an oz a week so inb4 dont want to hear any shit about my usage. it is extremely reasonable and in fact kinda on the light side considering just how much pain we are both in. we SHOULD have access to pain blockers and opiates but weed is what we have. and not even like top shelf GOOD weed, or concentrates or tinctures or anything. we shop bulk + bargain bin. we could use even less if we could afford better stuff. vimes boot theory applies to medications. isnt that fucked

[maldemer]

a wikipedia poem on software entropy

[a113cowgirl]

I’m in the hospital unexpectedly for a few days and FEROCIOUSLY consuming Stolitz content to survive/heal myself ♥️🥰

Pls send your fave stolitz fanfics, one shots, fanart, COMICS, especially 🥹👉🏻👈🏻

[longhaulerbear]

(Vascular Compression Syndrome Introduction on Vimeo)

An *outstanding* explainer video about vascular compression syndromes incl. MALS, SMAS, May Thurner, Thoracic Outlet Syndrome and more.

[spoonfulofjesus]

Aha. Ow. How dare I eat food my bad.

[seekers-who-are-lovers]

Life is not worth a single line of Baudelaire.

—Akutagawa Ryūnosuke, “Life of a Stupid Man”

Mals, Italy (August 2024)