Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.
Sep 6 • 4 tweets • 1 min read
I’m chronically ill and I don’t work. I’m not on “vacation” and I’m not bored. I’m quite busy struggling to survive every day. I gave up most of my socializing and most of my hobbies. Not by choice. Because my body decided for me. Please don’t call me lucky or try to fill my time
I cannot stand when people try to find jobs or things for me to do to keep busy. If I needed them I would find them myself or ask. I’m not only too sick to work, I’m too sick to enjoy not working…
Apr 8 • 21 tweets • 5 min read
I’ve done a thread like this before but it’s been a while. Does anyone want me to post links to the products I use that are safe-for-me with my MCAS/allergies? I can’t use much, so if you’re super sensitive too it might be a good place to start. I will just post them here if so
Like har products, skin products, soap, etc
Jan 28 • 4 tweets • 1 min read
A diagnosis isn’t just a “label”
A diagnosis is:
-Answers
-Clarity
-Validation
-A way to find the right treatment plan
-A way to find the right drs
-A way to describe to others what is going on with you
**P.S. Your symptoms are also valid if not diagnosed**
But there is a reason a lot of us seek diagnosis and it has nothing to do with “labels” or “attention” or anything like that, that some people try to claim.
Jan 18 • 6 tweets • 1 min read
1) My getting sick with something (I.e. the flu) is not the same thing as a healthy person getting sick with something (I.e. the flu). I started at a worse baseline to begin with, I get sick worse & for longer, I’m more prone to infection, it flares my existing illnesses, & my
2) allergies prevent me from having access to all the treatments a normal, healthy person has. I’m not saying this to be competitive or dismissive of other’s suffering. People just often look past this true aspect for many of us chronically ill/disabled patients.
May 12, 2023 • 4 tweets • 1 min read
During one of my telehealth appts this week my dr said “are you not feeling well? Why didn’t you come in?”—because I’m chronically ill/disabled, why would I come in for you to read me my blood work results and tell me what you want me to do about them?
I should come in and expose me and my family to illnesses for that? It can be handled over the phone.
Mar 2, 2023 • 5 tweets • 1 min read
If you have #EhlersDanlosSyndrome has your shoe size changed?
I was a size 6 shoe til I got pregnant with my son. Then a 6 wide/6.5. Then I got the big sick, now I’m a 6/6 wide/7 lol 😆
Nov 27, 2022 • 7 tweets • 1 min read
Someone fed my dad pepper today even though he asked them not to put it in the Thanksgiving food & he got sick & had to go home. They thought “a little” would be ok. No means no. If someone has food allergies/sensitivities, dietary preferences, religious reasons, etc—no means no!
I wasn’t there which is probably a good thing 😠
Aug 19, 2022 • 4 tweets • 1 min read
If you see someone accepting the fact that they’re chronically ill/disabled I can promise you it’s not because they’re lazy, negative, etc. It’s because acceptance means moving on and living the life you have without waiting for a miracle that may never come.
Most of us exhausted all our resources and tried absolutely everything before we came to accept that this is life now. We now want to move on and be accepted as we are.
Aug 18, 2022 • 4 tweets • 1 min read
Depression is a horrible, tragic thing. I don’t think I’ve really had whole-hearted, genuine happiness since I became with sick with it at 16 years old (I’m now 32). It casts a shadow over everything and even the small glimmers of happiness I’ve had often get clouded with it.
I wonder if I’ve ever had genuine happiness or if the way my brain was made has denied me of it completely. But I think I was happy as a child. Other than being sick all the time & all that I missed out on because of it. I just really wonder how people’s brains feel without it
