I got fired from my general practitioner last year that I’d had for years as a disabled person. Why? I asked them to refill my medication, and they reported me for drug abuse. Listen to disabled people when we tell you that we’re mistreated. A thread 🧵: I called the pharmacy to check on my refill. They said my doctor declined the refill. They got them and my neuro (who actually prescribes it now) mixed up and had me call my GP and ask why it wasn’t being filled. I forgot that my GP no longer prescribes this medication to me.

Hi, I’m Hannah. This is my story about COVID changing my life. This will be a thread, so here we go:

I got COVID in 2020 (during the first wave, months and months before the vaccine was released) at the age of 23. I am now 28 years old, and I spend every day in a bed. When I first got sick, I just thought it was taking my body a bit longer to recover. I was exhausted, couldn’t walk, couldn’t breathe well, etc. I thought “Hey. I’m 23. I was an athlete all my life. I have no pre-existing conditions to worry about. I’m fine.”

October is Dysautonomia Awareness Month. Let’s talk about POTS and things you may not know. A thread:

• Postural Orthostatic
Tachycardia Syndrome affects the entire body
• Heart rate that jumps by 30+ when standing, fainting, pre-syncope, dizziness, blurred vision • Painful pooling and vein constriction, Gl issues, brain fog, fatigue, inability to regulate temperature, chest pain, palpitations, air hunger, muscle aches and pains, weakness, and more
• Our quality of life has been compared to patients with kidney failure on dialysis

“You could do it yesterday”

And today, I can't. Let's talk about dynamic disabilities! A thread 🧵:

A dynamic disability is one that fluctuates in severity. This can be week by week, day by day, or even hour by hour. It's hard to predict how we'll feel. One moment, we can do certain tasks. The next, we can't do it at all, or we need extra help doing so. I may be able to meet a friend today but be completely incapacitated and unable to move
tomorrow.

ATTENTION ALL MENTALLY AND CHRONICALLY ILL PEOPLE: This is your yearly reminder that your medication could put you at a higher risk of heat related illnesses such as heat strokes and heat exhaustion. Examples:

• Antidepressants
• Antipsychotics
• Beta blockers
• Diuretics • Certain antihistamines like Benadryl
• Stimulants such as Adderall
• ACE inhibitors such as Lisinopril
• Benzodiazepines
• Calcium channel blockers
• Some mood stabilizers such as lithium

Life lessons from a sick and disabled person: A thread 🧵:

• Learn to surrender. We're told to take charge of our lives and that we can do anything. There are things that are out of your control that you cannot change.
• Your job won't take care of you when you need them. Your loved ones will. Make time for them.
• There are many things that you think are small and that you take for granted. Going on a walk, going to concerts, traveling, cooking, and even working. Do things while you can. All of the things, and be thankful for them.

"COVID is no big deal"

COVID-19 has contributed to more than 40 million new cases of neurological disorders worldwide. People who had COVID are 80% more likely to suffer from epilepsy or seizures. They have a 77% higher risk of developing severe memory issues. 50% more likely to have an ischemic stroke. 43% more likely to develop mental health disorders such as anxiety or depression. COVID was linked to a higher risk of new-onset dementia. A large amount have been diagnosed with
ME/CFS, a debilitating condition.

So, you’re going to doctors and trying to get them to listen. Been there. Here are some tips: A thread 🧵:
• If they blow you off, ask what their differential diagnosis is. This will catch them off guard, and they’ll have to list actual things that it could possibly be. • Ask them how they ruled any of those things they just listed out.
• If they are refusing anything like other testing, request that they note in your chart why they are refusing. They’ll normally give in immediately.

Hi, I’m Hannah, and I’m epileptic! Everyone should know basic seizure first aid. A thread 🧵:
• Stay with the person until they are alert, and try to time the seizure if possible
• Do NOT restrain them or try to keep them still
• Do NOT put anything in their mouths • Make sure no one walks over them
• If they’re having a focal/absent one (non-convulsive), just help steer them clear to a safe area, and, again, stay with them
• Check them for an ID bracelet in case it says to administer emergency meds

Hi, my name is Hannah, and COVID took my life from me. I was an athlete for over 10 years and had straight As all through high school. I then graduated with honors, got multiple scholarships, and was years into college for my PsyD. It was my dream. (1/7) I liked doing things with people and my spouse. I loved traveling, going on adventures, reading, drawing, painting, and I even loved having a job. I also had a healthy immune system. This was all until I contracted COVID in August of 2020 before the Vs even existed. (2/7)

Hi, I’m Hannah! This is my story of battling long COVID. I got COVID in August of 2020 at 23 years old which turned into COVID pneumonia. Little did I know that I would be completely disabled from then on. It seems as though I get worse every day. (1/?) I have seen specialist after specialist. I’ve been hospitalized as well. I’ve only just now started to get any kind of answers. It took me a while to basically learn to walk again, and now, I can’t walk without my medical walker or using a wheelchair. (2/?)