At this rate I will have to do a 2024 in review. Needless to say, this year has not been great. I will cut the review down to the necessary bits so we can finally move on.
Medication
I started Low Does Naltrexone and it helped a bit. It's prescribed for pain and also helps with sleep. This is my first time being on anything for pain since Amitriptyline in 2016. I was cautiously optimistic but it really didn't help much. The prescription ran out and as of July 2024, I haven't requested a refill.
Support
Have you ever felt that with chronic illness, that thought the people in your life try, they can't fully understand you? I have top tier support! My daughter is my emotional support person and first line for all things. She made herself this not me. My son is 2nd in line for schlepping and lifting. My mom and stepfather are on it in everyway. I also have ones that assist where they can and I couldn't ask for better care. I do realize that for many people, this isn't a reality. Still, I know that what they see and what I actually experience are light years apart. I can't effectively articulate what's happening and they are no words for your body fighting itself to get the blood back to your brain. The prickly feeling of your skin on fire from being touched. The churning of the stomach from movement, bright lights or certain sounds.
The Conference
In July of 2023 I had the opportunity to spend a few days surrounded by people who go it. I didn't have to explain my movements, my symptoms or why I am doing something or not. This magical place was the Dysautonomia International conference that was held in DC area. We all had huge water bottles, electrolyte packets from various brands too. I am partial to LMNT these days. There were compression socks, mobility aids, service animals, braces and most importantly, smiles. We all were just so happy to be there. It was like the Disneyland of autonomic dysfunction. I volunteered so I had a behind the scenes look at all the work that went in to making this a knock out event. I met people who I only talked to online. We laughed, we shared, we teared up or we just flat out cried. We could relate on so many levels and it didn't matter the age differences or the geographic backgrounds or cultures. I felt truly understood and comforted.
Why
Representation matters especially in this space and at the conference there were maybe 4 other black people there. That was another layer of joy. Throughout this journey of mine, since 2009, I didn't see anyone like me. Almost no one in my age group except for this one lady in Australia who I followed for a while. The dismissal in medicine for being black with POTS is very real. Being a woman at all in medicine is a struggle but being a black woman adds a new layer of difficulty. After meeting so many great people it rekindled my desire to do this blog.
Feeling Worse
I started to feel worse and more symptomatic. I eventually took off 5 months from work because I just couldn't get myself together. Another issue arose but I didn't address it because I was buying a house and it took up all of my brain cells. This was I started to choke. I would choke on my saliva, on water on a bite of food and it was getting scary. It happened more and more and often when I was alone. It didn't require the Heimlich maneuver, yet but I was worried. My throat was also dry and I with the insane amount of water I drank to keep me alive, I knew that it wasn't due to dehydration. I also noticed that I was getting hoarse in the morning, like every morning. I talk for work and it was making it impossible. I also felt like I had a lump in my throat, so I was very alarmed.
Testing
I saw an ENT who was familiar wit POTS and sent me for a Barium Swallowing Study. That came back with Moderate Dysphasia. The encouraging part is the doctor confirmed that none of this was normal. Next up was a Manometry which I could not tolerate at all and I will not gross you out with the details. Same day I had a 24 hour PH study and that it equally as miserable. See the photo above if you don't believe me. The mention of Sjögrens was kicked around by the team in Mayo so a repeat ANA and a Lip Biopsy to confirm it for sure.
This was the abridged version of 2023 so the next one will be about the test results and more of my current day to day. Thanks for still hanging around.
Until the next time ❤️
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