Shit Show - Blog Posts

what do you mean elon musk did a nazi salute on live tv at the united states presidential inauguration twice and is now erasing the evidence off the internet by replacing the footage with the crowd cheering instead?

would be a shame if people reblogged this, wouldn’t it?

3 years ago today is when this shit show of health problems started.

I was at an event making hot coco for some kids and my hands stopped working. There was pain up to my elbows and I couldn't move my fingers. Local doctors had no idea what happened and they couldn't diagnose me correctly. I called the closest specialty clinic that is 2 1/2 hours away and had to wait until the end of the next month to even be seen.

The neurologist who saw me said "essential tremors" and sent me on my way to rheumatology who gave me no answers to my other problems. It was about seven months later when I found myself back in that hospital's ER due to having a worsting of my visual blackouts and pain. I was in that specialty ER for about six hours and only got an IV and was told to eat more salt and drink more water. My mom and I decided that that wasn't worth the hours spent there and headed to another specialty hospital's ER.

We were there for about seven more hours and that's where we were told about POTS (Postural Orthostatic Tachycardia Syndrome) and were recommended to their movement disorder specialist.

When we saw him, everything changed. I was diagnosed right off the bat with POTS, EDS, Functional Weakness, and vestibular migraines. He recommended me to other doctors at that hospital and we fell in love with the care they took with everything. They got to know me before even looking at the chart and wanted to make sure that everything is just right.

I am still going back to that hospital for other reasons, but I am getting the help I need. The doctors talk to each other and that helps to move things along smoother. Just a month ago, I was invited to a Comfort Ability workshop with other teens my age to learn about how to manage our pain easier. We were separated from our parents, as they were having to talk together about how they can help us, and we were allowed to sit or lay down and had blankets and yoga mats to lay or sit on and the room was really welcoming as we talked about our experiences with our pain. We were given a 'goody bag' of sorts with reusable heat/cold packs, essential oils, and stress toys. And everything was provided by the hospital and was free to us.

All I can say is that my experience with chronic illness has definitely had it's ups and downs. I am both grateful and sad that December 7, 2019 happened - but it got me where I am today with these diagnosis and I have learned more about what I can do for myself and how to adapt to new situations.

With hope,

~ E