I’m struggling more than usual this last month.
My symptoms seem to be multiplying and getting worse, almost daily. I hardly sleep at all anymore - a few hours here and there. I gave in and asked for some pain meds from my PCP, which I really don’t like to take and he doesn’t like to prescribe, but I just need a break from the pain. Like an ice pick in my neck, then down my shoulder. Plus, the regular ear/neck pain has been increasing.
I’m also getting - like, new versions of vertigo. Usually, it feels like I regressed to 5 years old and decided to spin in circles until I fall to the ground only not as fun as it was back then. Lately, sometimes the world just tilts. No nausea, it just tilts. No warning.
I’ve wet the bed 3 times. I think this might be due to not getting any sleep - when I finally do fall asleep I just can’t wake up in time to make it to the bathroom. Still.
My symptoms have always been on the left - I even have lower back pain on the left. In the last month, my right ear has been ringing and is painful, and it’s itchy and crusty.
I’m terrified of surgery and/or procedures (I had some “medical trauma” a few years ago and still get flashbacks sometimes) but I’m ready for them to do whatever they need to. I am experiencing real cognitive decline, and it terrifies me - I’m on leave from work but I won’t be able to go back if they can’t fix me.
I have a few good friends. I’m a bit of a social introvert - I have a lot of aquaintances, but only a few people I consider “support network.”
My “chosen family” dumped me back in October. I’d been part of their family for 15 years. Thanksgivings, holidays, I watched their kids grow up and my friend texted me that “it seems like you are dragging this out on purpose” when I was hesitating over getting the angiogram. She has ghosted me since then.
Even if someone is finally going to operate on me, I don’t know how I will be able to take care of myself. I’ve got a dog, and I’m currently renting a split-level. I had planned to buy a house this year but I can’t focus enough to do that, not to mention if my leave from work goes on much longer I won’t be able to pay for one. I am going to have to renew my lease at this place.
When I lay down at night, my nose gets so plugged up I can’t breathe. When I roll over in bed (such as I can) I see circles in my eyes, and I now get vertigo. In bed.
I’ve gained 50 pounds in the last year. I used to be a very active person and never struggled with my weight but - wow - I don’t even recognize myself. Not to mention, my joints are killing me from hauling all this extra around.
I thought we had a diagnoses and a path forward when I found out I had venous thoracic outlet syndrome. Then the doctor said that even though they had looked at Eagle’s syndrome and ruled it out, they had only looked at arterial Eagle’s. So, another CT and it turns out - HA! - my jugular vein is compressed! I still don’t know if they are going to operate, or when. I have a follow up in 2 weeks.
I can’t do anything I enjoy doing - working, reading, puzzles, climbing, sailing, biking, dancing, yoga - I can’t even drive to see people. Grocery shopping is more difficult than ever. I can’t even walk. I miss my job - I love it so much that it’s also my hobby, but I can’t do much there either.
Should I get a recliner? I think that may be the only way I can sleep!
Also, what are the chances the random, intense tearing in my left eye and the random, intense left nostril gush is CSF?! I just read about that, now that I’m looking at an Eagle’s dx again.
It’s as if my body is trying to strangle me… “the call is coming from inside the house…”
This totally sucks.
That is all.