▲ 11 r/eds

I feel lost in my life from chronic illness.

I posted this on the EDS fb group in my area too but..

A little bit of a rant today.

After more than 10 years of navigating and managing a million health issues from EDS, it's sometimes hard to believe this is my life. There have definitely been ups and downs, and I'm grateful for the things I been able to experience. But I'd be lying if I said I don't grieve everything that's been taken away...my career, friendships, school, independence, financial opportunities, and so much more. I got sick right when I was supposed to be starting my life.

Lately, my biggest grief has been feeling like I ran out of time and opportunity not because I didn't want those things badly enough, but because I simply didn't have the health, energy, or resources. There was so much I wanted to do, but so much of my time has been spent in bed or on the couch because of severe fatigue.

For those of you living with EDS or other complex chronic illnesses, what helps you feel like you've contributed to the world or to your own life? Do you have any hobbies, projects, or small things that give you a sense of purpose?

I've thought about creating free resources for people with chronic illnesses that could be useful from bed, but then I wonder if AI can generate most of that in a few seconds. I've also always wanted to write a book.

I'd really love to hear your thoughts or ideas. anyone else??

reddit.com
u/xlifeinmotion — 23 hours ago

Any Docs in the US that take insurance that treat Thoracic Endometriosis?

I see Dr Sinervo is highly recommended but the out of pocket payments are not possible for me right now.

Anyone have any recs or ideas on how I can get some support?

reddit.com
u/xlifeinmotion — 15 days ago
▲ 10 r/Asthma

Levelbuterol is helping a lot but only lasting a few hours. Is there a daily inhaler I can ask my doc about that has low side effect profile for tachycardic patients?

I'm new to all of this, but developed breathing issues post Covid infection a few months ago. I had many severe allergies for a long time. I finally saw a Pulmonologist and I was given Levelbuterol (because my history of fast HR). It helps a lot with and only gives me a little bit of symptoms. However, after two hours I am out of breath again and having shortness of breath/ fatigue/ chest tightness again.

He only wanted to start one thing at a time with my allergic history, but I want to ask for something else with it due to the amount of symptoms I have everyday.

Is there a daily inhaler on top of Levelbuterol that is better tolerate patients with heart issues? I have SVT and POTs.

reddit.com
u/xlifeinmotion — 16 days ago
▲ 3 r/eds

What are you guys doing for really dry eyes?

I have really dry eyes and it’s getting worse.

I use cromolyn sodium eye drops to help with itching but I still have very dry eyes. I use a warm compress and try to blink/spray water (lol idk if that’s good or not?)

I take very high dose h1 blockers to help manage mast cell. I tried the over the counter systane dry eye. They make the itching worse.

What do you guys do? Anything I can ask my doctor about that may help?

reddit.com
u/xlifeinmotion — 18 days ago

Does ts actually make a difference or am I easily influenced? 😂

I am also going to add salt to my water because I need 8-10mg of sodium a day too.

Anyone noticed a difference with these?

u/xlifeinmotion — 19 days ago

I can't find any magnesium I can take. Any ideas?

I'm hypersensitive to supplements due to mast cell, but could use magnesium for my migraines.

Most of magnesium supplements have huge pills or fillers I can't tolerate. I sometimes struggle with even capsules unless they are small. I cannot tolerate any fruit so gummies won't work. Then I heard the liquid drops and powder are disgusting. Any other ideas?

I can tolerate chocolate. Could I mix one of the powders into chocolate and make candies?

I'm struggling.

reddit.com
u/xlifeinmotion — 1 month ago

Being sick really highlighted all the nasty behavior of those around me. Even more bothersome that I need them to just survive.

My needs are always seen as annoying or an inconvenience. I ask and they are ignored. But what can I do.. leave.. with what money, job, or help.

Soo I will continue to be ignored and nothing can happen because at the end of the day I need the people who think they can treat me however they want.

I miss my independence

reddit.com
u/xlifeinmotion — 2 months ago
▲ 1 r/Anemic

I have POTs, endometriosis, MCAS, EDs, etc. Four months post op from endo excision surgery, stage 4. I was told I am anemic and iron deficient on Monday. I started taking iron yesterday and took my second dose today.

My levels are:

Hemoglobin: 10.4

Hematocrit:33.7

MCV: 77

MCH: 23.8

MCHC:30.9

Ferritin: 10

Iron sat: 10

I am now bleeding and spotting. Even though my period is well and done. Ended last week. Is this normal? This is very uncommon for me.

reddit.com
u/xlifeinmotion — 2 months ago