3 Years Ago Today Is When This Shit Show Of Health Problems Started.
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
More Posts from Chronicallye and Others
Anybody else have a sensory problem with wearing a winter coat indoors?
Like, I can't wear a coat in a freezing car because it is too much coat.
beep boop bones go crunch
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.
Fuckin' Finally
FYI to sick or disabled folks and those who assist or care for them: Simplicity patterns has a new line of adaptive sewing patterns. Designs include tops with port access, clothing with velcro closures, bags and cushions for mobility aids, bibs, chemo hats, and more.
I’m excited about these because they are the first patterns of this kind I’ve seen anywhere. And Simplicity patterns are great for beginning sewists, with very clear step by step instructions and illustrations.
Patterns can be purchased here: https://simplicity.com/simplicity/adaptive/
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Tis' my birthday and I am now officially the dancing queen, young and sweet.
(I am in so much pain)
Service Dog Handlers, how do you respond when a child (or intrusive stranger) asks what service your dog provides?
HYDRATE OR DIE STRAIGHT, BITCHES
YALL SOME REMINDERS
DRINK FUCKING WATER
EAT FOOD (IT CAN BE SMALL, JUST EAT SOMETHING IF YOU HAVENT)
SLEEP AT LEAST 5 HOURS TONIGHT
DO AT LEAST ONE SELF CARE ITEM:
LIKE:
TRYING TO BRUSH YOUR TEETH
OR WASH YOUR FACE
BRUSH YOUR HAIR
CHANGE CLOTHES
SHOWER OR USE A BODY WIPE.
(BUT REMEMBER ITS SUPER FUCKIGN HARD TO DO THAT SO IF YOU CANT, THATS OK)
TRY TO LEAVE YOUR ROOM, AND WHEN YOU DO, TRY TO REMOVE AT LEAST ONE DISH OR PIECE OF GARBAGE WITH YOU
TAKE SOME DEEP BREATHS
ITS GONNA BE OK
IM PROUD OF YOU, NO MATTER WHAT YOU'RE ABLE TO DO
AND REMEMBER, ALL STEPS ARE SOMETHING TO BE PROUD OF, EVEN IF IT FEELS LIKE NOTHING TO SOMEONE ELSE
YOU'RE DOING AMAZING
It feels like there is a little man under my kneecaps trying to get out
Everyone is preparing me for the day I get better.
No one is preparing me for when it's not.
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