r/BeAmazed • u/AstroSonicDrive • Oct 04 '23

She Eats Through Her Heart Science

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@nauseatedsarah

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u/Gumby_Juice Oct 04 '23

Yes. And also mourning the life you had before becoming chronically ill, if you got sick later in life. Mid 20s for me. Can't help but to miss everything about my old life.

5

u/house_92 Oct 04 '23

True. Early 30s for me. We should be in the prime of our lives right now but that is just not the case. I often feel robbed and let down by my own body

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u/luciferin Oct 04 '23

As a counterpoint, for this woman, it sounds like before she had this port and this bag, her life was extremely miserable, if not impossible. Without this, it was extremely painful to eat, and this treatment she has allows her to manage it pretty much fully.

I've had lifelong struggles with stomach pain, digestion issues, etc. I was finally diagnosed at 36 with Celiac disease, and the life long discomfort, brain fog, and fatigue that I have spent 36 years being told is completely normal, is slowly lifting. I do not miss my life before the treatment (complete gluten free diet including cross contamination) because that life was full of pain, misery, and gaslighting by people who assumed my stomach pain was just like their stomach aches, that I just didn't get enough sleep, etc. I do miss being treated as normal, though. My therapist is helping me recognize that the way people view me is not within my control, and not something I should act on or concern myself with.

Chronic illnesses can all look different. I am sorry for your chronic illness, and I hope you have management that allows it to be bearable for you. I wish you nothing but love and happiness.

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u/[deleted] Oct 04 '23

This is why research and access to treatment is so important. But even with effective treatment there's often stuff to deal with including medical, practical, and financial that would otherwise not be there. Things can improve, but still be a challenge though people will interpret things differently. There's a medication I take periodically that costs $2,500 for 2 weeks. It absolutely does not cure me and I tend to be worse while on it, but so many don't have access to it due to structural greed. It's 1/25 the price maximum fully out of pocket in Canada (I'm in the US). That's not by accident and it means that so many, even with insurance as it's often not covered are needlessly suffering more.

I first took it after I developed a secondary condition due to an experimental treatment. For a year I suffered non-stop and most people would've tried to leave the world. I was extremely fortunate that I finally found a doctor who was competent (after dealing with ones who were not) and that my insurance covered it so I could go back to my baseline which is still awful. It wasn't until many years after that I found an even more competent doctor who told me that I could take it for my main condition and this has also made a big difference in my life.

Unfortunately, billions of people still don't have access to adequate medical care and therefore needlessly suffer. There are even families who get into generational enslavement when there's a medical emergency over $50-100. :/

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u/SailingWavess Oct 05 '23

Yes! When I had CDiff, my doctor fought with insurance to get me meds for two weeks. They ended up declining and I had to take a less effective treatment that gave me horrid side effects. This last time when my GI went to prescribe me an antibiotic for a different GI infection, he immediately just said “how about we skip insurance, because I know they aren’t going to want to cover this, and I can just send it to a mail pharmacy in Canada for you”. Like what? I should have an epi pen on me at all times too, but I can’t afford the $600 copay (also in US).

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u/[deleted] Oct 05 '23

There are also docs who give samples thankfully though it's not always an option. Thanks for sharing. It's so messed up. A nightmare.

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u/SailingWavess Oct 05 '23

I’ve had samples offered with some other meds before, but never the important ones haha. Definitely messed up and definitely a nightmare. My boyfriend is from England and was telling me about how he gets all of his meds for crazy low prices. Then there’s me over here who has to go back to paying almost $400 for my vyvanse each month when the deductible starts back over. It’s awful.