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  • Writer's pictureSami

A Doctor a Day Keeps the ... Wait That's not Right is it?

This week, I had a different Doctor's appointment almost every day. I'm not entirely sure how I managed to schedule myself with an appointment everyday, but somehow I did! Here's a little update on how life's going:


MONDAY

Monday's appointment was Physical Therapy. This is still my god-send when it comes to my body/joint pain.


Most recently my right hip has been the main concern, as it was subluxing everyday, which caused my labral tear to hurt even more. A few weeks ago I got more Prolotherapy, which thankfully has helped my hip stop coming out as much!


I got to spend time at my cabin this weekend, which was wonderful! After a long weekend of driving though, my back was very stuck. My PT said my neck was probably the worst it's been, but she was able to get it moving.


Typically PT these days consists of work on my SI joint, thoracic spine, R hip, psoas, both shoulders (with some extra love on my right), neck, and jaw.


Having a good PT has seriously changed my life!


TUESDAY

Tuesday's appointment was with my PCP. I typically have an appointment with her every 2-3 months to check in on any updates, medication adjustments, persistent issues, etc. She is awesome! These appointments definitely help me organize my thoughts on everything that has happened in the previous months and what to think about coming up.


We have been trying to figure out the right combination of medications to help with my POTS (I'll write about this some time soon!) and anxiety. Sleep has been a big issue for me for a long time. With a combination of joint pain in certain positions and endless thoughts, it is quite difficult for me to get restful sleep.


Fun Side Story: Someone who read my hand surgery post also goes to the same PCP and told her about my blog! She told me she read it and has been telling her other EDS patients to read it to know what to expect with the surgery. So, my wonderful PCP if you are reading this, thank you for all that you do, you are amazing!!


WEDNESDAY

Wednesday's appointment was super interesting. My hand surgeon had suggested to me that he thought I had Thoracic Outlet Syndrome; a compression of the nerves/blood vessels under your collar bone. When my arms are in certain positions, my arms/hands/fingers start tingling and become numb.


My PCP referred me to a Vascular Surgeon to see what he thought. The appointment on Wednesday was an ultrasound to see how my blood flow was in certain arm positions.


It was about an hour of lots of blood pressure measurements, and ultra sounds with my arms in positions that trigger the tingling.



But great news; as of now, the Doctor thinks I don't have Thoracic Outlet Syndrome! There is still potential for me to develop it, but right now I just have Thoracic Outlet Symptoms.


THURSDAY

Thursday's appointment was my two-month follow up with my hand surgeon. My thumb is still partially numb, I can't put weight on my wrist, and my thumb hurts in certain positions, but he said it is healing just as it should!


Two weeks ago at a dance convention, on my way up to the stage, I tripped and completely ate it (like truly ate it😂), catching myself with my hands/wrists. I am so happy I didn't mess anything up from the surgery!


I just appreciate my doctor so much because after he checks my hands he always asks me about anything else that I'm having issues with. I brought up my hip, and he confirmed with me that having hip surgery would be in my best interest and that the doctor he referred me to is one of two in Washington that really know what they are doing when it comes to EDS patients. I'm still going to avoid it if I can, but we will see!


FRIDAY

I'm laughing as I'm writing this because I pre-wrote Friday with "Hooray! No appointments today!" I must have jinxed myself because I ended up having to go to PT again because my left shoulder was pushed forward out of the joint. Normally if my joint is far enough out, I'm unable to get it back in place, but thankfully she always can! She is working on trying to get me to be able to reset things on my own.

 

Not every week is this packed with appointments, but it does give a good idea of what a typical month looks like for me! I am thankful to have found doctors that know EDS and know me. For so long I struggled with doctors just telling me to just stop dancing, rest, and ice. There is such an interesting divide between healing physically and losing what brings you joy. Right now, I am fighting for both!




Be Brave. Stay Kind. Much Love.


Sami




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