#remission life

[thebibliosphere]

tw: content under a cut for talking about calorie counting (in a positive way), restrictive medical diets, and MCAS 'remission.'

So it's been 5 months since I last saw the GI doctor who took me seriously regarding my mast cell dysfunction, and not only have I gained a LOT of foods back into my diet under his care without experiencing idiopathic anaphylaxis, but I've also managed to eat 2000 calories almost every day for the last 5 months.

Prior to his care, since 2020, I had been mostly surviving on a liquid diet with the odd bit of solid carbs and protein when I could handle it.

Which was better than the 2 things I could digest safely prior to 2019, which were oatmeal and filtered tap water toward the end when I was dying. But even after I recovered from that, any time I went over 700 calories a day in solid food, I'd be writhing in pain.

I still have days when the pain hits, and all I can manage is liquids, but those days are so much less, and thanks to being able to eat more foods, I can at least liquidate more nutrients to make sure I'm getting what I need.

Things will never be 100% healed. That's not the nature of this kind of immune disease. But they're better. I'm better. I'm still so scared to say any of this is in remission because MCAS is wildly unpredictable. But I'm so much better than I was.

And I'm going to go happy-cry and eat a gluten-free cupcake about it.

[bsptourist]

dr_supermario64fixed

originally created by Zakariasan2, uploaded by Azus

[earndiltheequalizer]

Original and extremely good comic by @heyniceworkasshole

[tumble-tv]

Had to leave school early again because the pain was making me nauseous, and I couldn't focus, and I was struggling to stand for more than like 30 seconds. I hate this. I missed a cool assembly because of this. I missed my favorite class because of this. I'm so tired.

[postav54]

Officially Cancer-Free and in Remission y’all 🙌🏼🍾🎉

[grits-galraisedinthesouth]

It seems like yesterday that William & Catherine were using their creativity as The Duke and Duchess of Cambridge to mark their 10th wedding anniversary. It is an intimate, moving and generous family video that globally communicated a decade's worth of their appreciation to the entire world.

This year (2024) their most personal & private family pain was shredded by royal watchers and talking heads like Piers Morgan, Michael Cole and Meghan Kelly.

How gracious and generous of the Prince and Princess, international role models, to (again) creatively speak life to a watching world in a language we can all understand: LOVE

Well done Kensington Palace for uplifting the virtues of hope, encouragement, friendship, love, and family. Well done! 🌟🌟🌟🌟🌟

Some days, life feels perfect

Other days, it just ain't workin'

The good, the bad, the right, the wrong

And everything in between

Yo it's crazy, amazing

We can turn our heart through the words we say

Mountains crumble with every syllable

Hope can live or die

So speak life, speak life

To the deadest, darkest night

Speak life, speak life

When the sun won't shine and you don't know why

Look into the eyes of the brokenhearted

Watch 'em come alive as soon as you speak hope

You speak love, you speak

You speak life, oh, oh, oh, oh, oh

You speak life, oh, oh, oh, oh, oh

Some days, the tongue gets twisted

Other days, my thoughts just fall apart

I do, I don't, I will, I won't

It's like I'm drowning in the deep

Well, it's crazy to imagine

Words from my lips as the arms of compassion

Mountains crumble with every syllable

Hope can live or die

So speak life, speak life

To the deadest, darkest night

Speak life, speak life

When the sun won't shine and you don't know why

Look into the eyes of the brokenhearted

Watch 'em come alive as soon as you speak hope

You speak love, you speak

You speak life, oh, oh, oh, oh, oh

You speak life, oh, oh, oh, oh, oh

Lift your head a little higher

Spread the love like fire

Hope will fall like rain

When you speak life with the words you say

Raise your thoughts a little higher

Use your words to inspire

Joy will fall like rain

When you speak life with the things you say

Lift your head a little higher

Spread the love like fire

Hope will fall like rain

When you speak life with the words you say

So speak life, speak life

To the deadest, darkest night

Speak life, speak life

When the sun won't shine and you don't know why

Look into the eyes of the brokenhearted

Watch 'em come alive as soon as you speak hope

You speak love, you speak

You speak life, oh, oh, oh, oh, oh

You speak life, oh, oh, oh, oh, oh

You speak life, oh, oh, oh, oh, oh

You speak life, oh, oh, oh, oh, oh

Some days, life feels perfect

[heartevent]

This tweet is 100% correct and fellow people with bpd are replying like "you say this like insurance covers DBT and isnt 350 a visit. also there isnt a specific medicine for bpd also its expensive. hope this helps 😍" and while yes that is partly true (theres definitely insurance that covers dbt because i know dozens of people who have insurance that covers dbt. For one) i think there is no price tag worth more than the relief of going into bpd remission. There are ways to get help that fit specifically you, and getting help is worth more than anything. BPD is a trauma based disease, coming from both generational trauma and lived trauma, and trauma therapy has made leaps and bounds in recent years. Medication can be used to treat symptoms so trauma therapy and DBT may be more effective for you. A life beyond the pain you've always known exists for you, and it wants you to be there

[sophiethewitch1]

me and what we want are going through a lovers spat rn because i desperately want to write more for it but i constantly feel like shit so its really getting in the way of our relationship. also if youve sent me any asks that i havent responded to i am geniunely so sorry about it i am in the trenches right now

[fountainpenguin]

Scar @ Grian in Secret Life Ep 4: I can't tell you how sweaty I am in real life. I should take a picture for you and send it to you so you can have it.

[sauriansolutions]

I know there are Story Reasons why Azul and Malleus have a duo spell together, but I love making them do it in their little Birthday Boy outfits.

Just immediately ruins the seriousness of anything else going on.

[kirby-the-gorb]

I just bought myself a manga about the artist going through severe illness and I found it comforting to read someone else's experience, so I thought maybe I would share a little about my experience with MCAS again. so here's all the pills I take!

cromolyn. 2 ampules mixed with water 4x/day (although I'm often out of bed for 12 hours or less and have trouble keeping track of time, so often it's 3x instead). mast cell stabilizer.

multivitamin. I only took this for a week so far and stopped to gather data. (my paranoia was getting bad, which often means I'm reacting to a med. this is a cheap one with many fillers.) meant to make up for difficulty accessing food and possible malabsorption.

fludrocortisone. 2 pills a day. for POTS.

atenolol. 1 per day. also for POTS.

montelukast. 1 per day. technically for asthma, but works by blocking one of the signals the mast cells send.

loratadine (aka claritin). 1 pill 2x/day, which we had to fight the insurance about after a while. antihistamine, meant to prevent anaphylaxis by blocking a different mast cell signal.

aspirin. 2 pills 2x/day. to reduce inflammation and control chronic pain.

whichever oral hormonal birth control my insurance will give me (it varies). 1 per day. menstruation makes my MCAS flare and I still have incomplete cessation even after an ablation, so I keep taking it even when not putting myself at risk of pregnancy.

dye-free diphenhydramine (aka benadryl). another antihistamine, taken when my MCAS flares to reduce or completely end the symptoms. (the pink dye in the regular formulation is actually a very common trigger.)

low-dose prednisone. steroid kept on hand for unavoidably high-demand occasions (like moving across the country) or unshakable prolonged flares (like, a week).

that's 8 pills in the morning, 3-4 at night, 8 ampules in the day, and 2 different emergency meds. plus I try to drink a gatorlyte every day (also good for POTS and certain mineral shortages) and try to avoid triggers (including heat, stress, and overexertion -n- )

3 and 4 were the first meds that ever made me feel any better, before we'd figured out it was MCAS. (likely with secondary POTS/EDS.) 6 and 7 are the first line treatment for MCAS, they're the first medications I actually took *for* it. they are often used in combination with famotidine (aka pepcid) but that made my paranoia super bad so I stopped taking that one.

this was my regimen established before I got covid last july, which made my MCAS much worse, which also made it impossible to get a new doc post-move since I can't physically get to an appt. so this is likely to change once I have medical care again. being sick is a lot of work!

[lovesuplex]

reminder to never eat fried pickles again… gave me food poisoning so bad that I was shaking in the damn park, broke out into cold sweats through my undies(thought I peed myself at some point so I was panicking too… like not this too!), and promptly passed out once getting home…. but last night was gorge! won a butt plug

[musicalgifs]

will you guys hate me if i say i don't think the mean girls movie was that bad

[contentment-of-cats]

Celebrity, Cancer, and the Sword of Damocles

Shannen Doherty is a little younger than I am and is a Woman In Public with cancer.

Good God, that is one tough bitch.

Cancer strips away so many things we take for granted, puts us through so much. When she was first diagnosed eight years ago, I had sympathy for her. I knew treatment had changed a lot, and I was hopeful that she'd 'beat cancer.'

Now I'm looking at it from the inside, knowing that remission is not beating cancer. I love her for spreading that out there and having the courage to say it. We love pretty pictures, happy endings, inspirational stories. It's okay, but they ring hollow from the inside. People mean well, but there's almost a guilt when you have to disappoint them. Remission means they can't find cancer right now. If you make it past five years in remission, you're considered cured, but if the cancer comes back-

I got my blood test kit yesterday and will gave my draws done in the middle of next week. I'll find out if I am still in remission just before Christmas - it will be my year if I am still 'cancer free.'

Shannen said what's in the mind of so many cancer patients:

“I’m not done with living. I’m not done with loving. I’m not done with creating. I’m not done with hopefully changing things for the better,” she says, cracking a smile. "I’m just not — I’m not done.”

And:

“I know it sounds cheesy and crazy, but you’re just more aware of everything, and you feel so blessed. We’re the people who want to work the most, because we’re just so grateful for every second, every hour, every day we get to be here.”

She's fallen out of remission multiple times and the cancer previously metastasized to her brain, for which she had surgery. Now it's metastasized into her bones - the five year survival rate is 29 percent - and she's looking for clinical trials or experimental treatments. I hope I can be as brave since my chances of falling out of remission are 85 percent. It's like walking around with a bomb strapped to you, never knowing when Mr. Cancer's going to press the button. It's the reason I have kept my power port installed in my left arm - I beat the odds the first time with CRC 4A. I am not going to coddle myself with pretty pictures and inspirational 'beat cancer' twaddle. I am going to live as if every second I have is a gift.

She's right.

The sky is bluer.

[batz]

neurologist says my optic nerves are fine/same as last few appointments but still tells me to start taking 12 diamox a day and tells me to get out before i can ask why . also diamox like. cannot fix an issue involving my veins. but idk im not doctor so whatever

im 100% not taking 12 pills a day tho thatd hurt me. past few appointments hes just been rlly wanting me to have more diamox even tho he keeps saying im in remission but he wont answer when i ask why i need the meds then

[ariesgrrrl]

being Very Normal and Not At All Terrified of going to the doctor today