Over an hour drive to one doctor's appointment on the far side of town this morning, a quick run into a grocery store for lunch, an aborted EECP treatment, and I'm almost 3 times my allowed points for the day. Fuck this disease. I don't know if I'll be able to make it through the next 40 treatments.
I did the mg to units conversion wrong. I'm using Brello to get mine and their minimum dose is 2.5mg. So I was pulling 2.5 units. I thought wow this is such a tiny amount, it's so annoying to do, I'm throwing away so much medicine, it's so expensive that's stupid to waste it.
With them 2.5mg is 10 units. I've been taking 0.625mg. Which, awesome that it's working at such a low dose? But also I'm having such a hard time making myself eat anything. I'm not obese and I've lost 10 lbs. Health care providers have been lecturing me to eat more but yuck. How on earth are the non-chronically ill people taking like 15mg??
Seeing other people here taking like 1mg has made me feel better. Less like I really screwed up. Just really wish we could get insurance approved for pens.
I forgot to take it for several days. Do I have to go back to the starter dose and work my way up again?
I picked up a silicone band so I could start wearing my Visible while in the pool. It's really interesting to see that while I am in the water exercising, my body is registering as being at rest. I've been doing it for a couple months now and exercising in the pool for an hour has yet to throw me into PEM. It seems if I could live my whole life in water I would be just fine. :D
However you can see that getting ready to go out and then coming home and immediately washing my swim wear and getting a shower does throw me into the red. And all of the stuff around it turns a 1 hour workout into a 3 hour ordeal so it's not something I can start doing daily. I wish I could find a way to mitigate that. I'm not in a situation where I can put a pool in the backyard.
When I am out of insurance covered PT sessions I plan on joining the arthritis pool classes at my local YMCA. Will update again after I see how those go.
How can I get back to seeing just the subs I've joined?
If I wanted to see a bunch of subs Reddit thought I would be interested in (and no, I'm not interested in r/DogFood) I would use the Explore tab.
You have to rest or you won’t recover. But also don’t decondition.
You shouldn’t strain anything, it will only make your joints worse. But also build muscle to stabilize your joints and reduce pain.
Avoid crashes. But also you need to increase your tolerance.
Stay below your limits. But also we need you to go to ten different appointments and fill out the same stack of paperwork over and over.
Avoid stress because it worsens symptoms. But also you have to work your job to maintain health insurance.
Uh oh, now you’re disabled and can’t work. But also have enough money to get everything delivered so you don’t exert yourself.
Try the low-histamine diet for MCAS symptoms. But also increase your vegetables and fiber or you’ll become undernourished.
Avoid cognitive overexertion. But also argue with your insurance for weeks about covering something.
Reduce screen time. But also use apps, portals, telehealth, symptom trackers, and online support.
Advocate for yourself with doctors. Oops, too much! Now you’re diagnosed with "Whiny Woman."
Get specialist care. But also don’t look like you’re doctor shopping.
Use mobility aids to prevent crashes. But also don’t become dependent on them.
Don’t overdo it on good days. But also use good days to catch up.
(Totally having a self pity party and feeling frustrated after having to rest for multiple days because I went to exactly one store and will have to start doing things again tomorrow no matter how I feel.)
Hello, I was directed to you from r/laundry
We believe the bromine from the pool I do physical therapy in has bleached the parts of my swimsuit that have the least contact with my body. Unfortunately this includes there now being a stripe down... the middle of the bottom. 😳
This is now just my PT suit and that's fine, but I really need to find a way to even the color out more so it's not quite so obvious that I have a stripe down my bum.
Sunsets Indigo Forever Tankini Top
Fabric Content: 83% Nylon, 17% Spandex
Very obviously I've bleached the color out of my suit but how?? I'm so sad about it. The top alone was like $120 to get my odd size. :(
I've started doing physical therapy in a pool with bromine. The only things I did different this time was I rinsed off in their shower before going home, and after reading advice on the internet for getting the bromine smell out I soaked it in vinegar and water for an hour and then washed. I use woolite and wash it right away when I get home. I enter the house through the laundry room so I strip it off and wash it right then and there 15 minutes after PT. No bleach.
Vinegar should be setting colors, not washing them out. I'm so so sad. I can't go around with a stripe right down the middle of my bum! It looks like the color stayed on the parts of the suit that have the most contact with my body?
How did this happen?? Any tips for making the color even out now that I've ruined it?
Edit: Sunsets Indigo Forever Tankini Top Fabric Content: 83% Nylon, 17% Spandex
I've been taking 2.5 for 10 weeks for me/cfs, no obesity, and I feel so much better the day after taking it. However, I feel really stupid throwing away so much of a very expensive medication. Should we stick to the 2.5 or is it ok to bump up to 5? Will I see even more benefit from 5?
I'm having one every night. Thankfully most of them aren't traumatic.
Last night Ollie from the Youtube channel Jolly was being mean to me. At least stuff like that I can laugh about in the mornings.
I used to have a breakfast taco every single morning but my stomach is no longer able to handle the acid. Since starting my tirzepatide micro dosing I'm having trouble making myself eat anything at all in the mornings but I have to eat something so I can take my anti-inflammatory. I can do a little something like a rice crispy treat but I really don't like sweets, especially in the morning.
What low effort food are you able to stomach in the mornings?
Coming off of my "I want an off road baby walker for adults" thread, has anyone tried one of those exoskeleton things? I know there's r/Hypershell_Official/ and Dnsys and ExoBand and a few other ones.
I've only seen them used by more able people for performance reasons in the youtubes I've watched but I wonder if they would help with us, or if I would still tumble over but now with an extra 40 lbs strapped to me.
I know I'm dreaming thinking about backpacking again when I can barely handle the grocery store, I'm just so sad not being able to do all the outdoor activities I used to love.
I'm so wobbly in every direction, a cane wouldn't cut it. I don't want an old lady walker. I want a surround myself, fun walker like this!