Essential Tremor - Blog Posts

Question fory adult Potsies - what were some signs that you were not going to outgrow POTS? I have been having symptoms as far back as I can remember and want to know how I can prepare for my future.

So I'm currently working on cleaning a space out in my living room for a vintage sewing machine and it has taken two days to do so. The space wasn't all that messy, but I could only work for only about an hour before I got hit with nauseating dizziness that knocked me down for the rest of the day.

I ended up learning that even if I think I can stay within my limits, I'm wrong.

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

It's so weird that my school is actually really trying to help with my education.

Context - I have been out of school for the past month and a half due to chronic health flares, and that led to me falling behind. And now if I did feel good enough to get to school, I would be chapters behind my classmates. I have in my 504 that I can miss as many days as needed without consequences.

Anyways, I got a call from my principal a couple days ago and my mind automatically went to thinking the worst. Instead he had asked if there was anything that the school could do or provide to let me be able to catch up faster.

I read about all these horror stories about the schools system being absolutely terrible to people with disabilities and was caught off guard with the support my school is giving to me.

I am so far behind on my school work and am not able to go to school because of it. I am so burnt out and stressed and feel like giving up. I am also trying to get a job online because if I were to try and get a normal job, I would not be able to keep up with it, myself, homework, and still be able to do things I enjoy. My teachers and school is great when it comes to accomodations and late work, but it is a matter of me getting things done.

Does anyone else get overwhelmed at holiday dinners? Like just everybody talking and trying to pass food around and it just feels like I'm being torn in different directions and not being in my own body anymore.

When everyone gets to the talking, my ears just feel like that they are melting off my head and being sewn back on when things quiet down. I have tried earplugs and headphones, but I feel rude. I try to stay towards the back and don't direct attention at myself.

I really enjoy being with my family at these holidays and being a part of the festivities, but it is too much sometimes.

Just shopping at Walmart, as one does, and I was not feeling that great so I was using an electric cart.

As I was leaving, a lady turned to me and gave me one of the dirtiest looks and scoffed very loudly.

So I went "Ooh look at me, I'm an abled bodied person and can walk without falling down."

I didn't realize that there was an elderly lady almost right next to me and she started laughing so hard she had to stop walking.

I had a good day today, but when I normally do it is always bad the next.

I can do the bare minimum and still barely able to move the next day.

Does anyone have any good online job recommendations for someone who is disabled and still in school?

People think that I'm lying about my health problems.

Like if I wanted to lie about something like that, I would choose something more believable.

It's weird that doctors question me when I say that I have both a heat and cold intolerance.

Like you're the one who asked and I gave you a truthful answer.

YES I have both and YES it makes my life more difficult but I know my limits and how to use heating a cooling tools so that I feel good. I understand why you think it's weird and don't understand why it's possible, but that doesn't mean that you can say that it's not possible.

So... I might have something called 'change anxiety' and I hate it.

NOTE: I am NOT SELF DIAGNOSING just by doing research online. I will talk to my mental health team about this to see what they think.

So it's quite literally just anxiety attacks, big and small, whenever things change.

I get really upset whenever people just barge into my room and mess with my things - even if it's just grabbing a book of of my shelf. I on't like it because I know how my room is supposed to be and am trying really hard to keep it that way, so when my mom or even my dog come in to my room, I get really nervous and feel like I have to watch their every move.

I am so overly protective of my room because it is my safe space where I can be either in my bed, on my floor, or at my desk and it doesn't bother or trigger anything as much as the rest of the world does.

I ended up having a complete break down today because my mom changed the angle of my bed to be where I'm laying at a slant ( to help with my POTS ) and I absolutely hate it. We talked about it and made an agreement that if I still feel this way at the end of the week, we can change it back.

I hate having chronic pain. I was perfectly fine right up until I finished my lunch, then it went down hill. My joints started to stiffen and became hard to move and I thought it was because of the cold (which it could have been) so I warmed up my hands with a warm water bottle. It helped to let my fingers move easier, but then the pain started. It started in my hands and spread throughout my body. I took a bath and then just laid under my heated blanket. I am currently sitting on the floor crying because of the pain waiting for my pain meds to kick in.

The worst part about this is that if it was someone else who feels like I do, then they would be able to go to the ER to get relief. Or could go to sleep knowing that it would be better in the morning. I am worried that it will get worse and I will have to miss another day at school when just last week I missed 3 1/2 days.

I am exhausted and overwhelmed and ready to give up.

So I just had blood drawn and it wasn't a lot taken. When I left the lab, it took mabie ten steps before I had the worst and scariest visual blackout I have ever had. It was so intense that I could hardly stand and I think if I had been up any longer, I would have passed out. I felt cold all over but was sweating and I couldn't see a thing. Instead of just seeing black, a cloud of white ended up appearing. I have no idea what happened, but I am really shaken.

Hi, I'm E. I am disabled and enjoy the arts. I like to sing, act, model, and let my imagination get the best of me sometimes. My medical problems include POTS, EDS, borderline hip dysplasia, vestibular migraines, and many more. I hope to share my journey to all who will listen. I don't want this to be a boring medical things, so I will probably add other things. I love the MCU, PotO, and American Horror Story. I also have a dog and three fish who are all quite dumb. Thanks for reading my first post!