To the people who couldn’t get out of their bed today, I’m here for you…
To the people who skipped showering because they didn’t have the energy, I’m here for you…
To the people who cried in agony through their shower, I’m here for you…
To the people who suffer daily but no one believes them, I’m here for you…
To the people who feel like they’ve lost or are losing their youth to their medical issues, I’m here for you…
To the brave people fighting for their health every day, I’m here for you, I support you, I believe you. Your feelings are valid, you are loved, and I will stand behind you.
Get your #salty dysautonomia awareness shirt in time for Dysautonomia Awareness Month next month! Available as t-shirts, v-necks, crewneck sweatshirts, and youth t-shirts in various colors and sizes! Only available for 3 more days!
I was recently yelled at by a man driving by as I was walking into a Starbucks after parking in a handicap spot. “Liar! Liar!” My first thought was “you weenie come back and say that to my face!” Then the shame set in. For awhile I felt guilty of…something. I know I’m sick but I know I don’t look sick, so maybe I don’t deserve my placard? It’s confusing and I understand. But then I reminded myself that 96% of chronic illnesses are invisible. Just because I look fine doesn’t mean my illness goes away or isn’t serious enough to be disabling. It’s not me that’s somehow confusing or misleading, it’s society and our expectations and stereotypes. Sick doesn’t have a look and neither does disabled. This idea that to be valid your illness or disability must be visible is ludicrous when you learn how many people are suffering from something unseen. Society needs a major reform in many ways, but especially with respect to its treatment and expectations of chronically ill and disabled people. What we really need is to just stop being so dang judgmental in general! Was it ever any of his business where I parked or if I “deserved” my license plate? No sir! All that I ask of people at this point isn’t even kindness, just neutrality or even indifference! Let me be! Can I just get my chai in peace?!
Chronic Readers Club turns 2 in April! ❤️ I would love to be able to say that I’ve sent out 100 packages by then! Right now I’m at 85 sent, with 6 people on the waiting list! So if you’re thinking of applying, now would be a great time!
Doin the #hospitalglam thing at Mayo Clinic this week
It looks like the dermatomyositis isn’t quite improving on my current immunosuppressant. I’m still having pretty severe symptoms and my blood work still isn’t too great.
My rheumatologist suggest I start IVIG to combat my illness. Intravenous immunoglobulin is plasma and healthy immune cells taken from human hosts and concocted into a fucking multi-thousand dollar vile that will hopefully stop my body from crapping out on itself.
The only issue is that I have to do the infusions locally. I’ve had a lot of trouble in the past finding doctors who respect me and take my condition seriously. Anyone who has been through illness has probably had a shitty doctor experience. South FL is filled with terrible doctors and I have horror stories that are almost unbelievable. Nonetheless, I’ll be doing some research and try to find a good rheum somewhere locally. Many people have suggested I try to get into Cleveland Clinic so I might check that out. This picture was before a set of x-rays and a lung functioning tests. Hospital gowns and robes are my look tbh. And the face mask? That and constantly washing my hands still didn’t stop me from catching someone’s damn flu. Even with all the precautions, you can’t control autoimmune disease.
Anyway, I’m quite looking forward to starting IVIG. As long as I can find a decent local doctor, I’m excited to try something new and hopefully start to feel better than I do now.
Have any of my followers done IVIG for autoimmune disease? What was your experience? I’m eager to learn as much as I can about this…
Once again it has been a while since I have posted on here but I am hoping that now I have an actual computer, not a laptop that I keep dropping, that I will be posting a lot more.
Not much has gone on really, i’m still ill but not so heartbroken any more which is a good thing I suppose, finally think I may actually be getting over him. Still depressed and anxious plus ive gained weight due to being on steroids for a prolong amount of time. I keep trying to stay positive, but its really fucking hard too, I know things could be a lot worse but they could also be a lot better, I think what gets to me the most is the fact that there is just no end in sight with my illness, especially as none of the medication that they use for my condition works on me,
Canadian Niece (11) has autoimmune disease. No remote school being offered this fall, but her folks sure af werent sending her back unvaccinated. So…they managed to get special compensation for her to get a vaccine even tho shes only 11. Got her 1st shot this week! Im so relieved!
