Why are there no medical specialists in connective tissue when it is what holds us together?
This burning question for EDS/HSD Awareness Month brought to you as part of Linda’s One-Liner Wednesday. Join us! Find out more here: https://lindaghill.com/2025/05/21/one-liner-wednesday-600/
My year has been a mess.
(It’s probably dangerous to write about it in stream of consciousness but here goes…)
2024 has been largely spent trying to untangle personal and family health situations. In March, I developed a constellation of symptoms, including left side tinnitus and visual blurring, left side neck pain and stiffness, numbness/tingling most prominently on the left side of my head, balance problems, and brain fog and fatigue.
There has followed a bunch of tests, specialists, and physical therapy – with weeks and months of waiting – and a lot of ruling out of diagnoses, but no answers yet.
Given family history and my own research and trying to pull together all the scraps of information I get from my care team, I think I have a decent guess on diagnosis but it doesn’t really matter unless I can find a doctor willing to look at the whole situation instead of their own specialized body part.
Meanwhile, I’ve lost almost a whole year of poetry work. My creative brain isn’t functioning most days. Sometimes, I get a window first thing in the morning but often not. I’m spending most afternoons in bed because of the fatigue and because it is difficult to hold my head up without support for extended periods. If I push through and do too much on a day, I’m likely to pay for it by being largely non-functional for a day or two or three or a week afterward.
I’m also lacking in my ability to remember and keep track of things. My critical thinking skills are slowed down, too. I try to do tasks that involve a lot of thought early in the day to have the best chance of remembering and piecing things together.
It’s sad and terrifying and frustrating.
I feel like a lot of who I know myself to be is missing and I don’t know if or when it will be back.
A recent test seems to show poor blood flow in one of the arteries that supplies my brain. I’m hoping that this might give us a treatable thing to work on but I’m currently waiting for the appointment with the specialist who can interpret the test. There will probably be more tests before we get to the diagnosis/treatment part.
I don’t know if 2025 will bring my brain back or if I will be facing further deterioration.
I’ll try to let you know…
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “my year.” Join us! Find out more here: https://lindaghill.com/2024/12/27/the-friday-reminder-and-prompt-for-socs-dec-28-2024/
I thought I’d do a brief update on my health status, despite still being in the middle of the diagnostic swamp.
When I wrote my last update, I had not yet started vestibular therapy or had my hearing test. The hearing test ruled out hearing loss as a cause for the tinnitus. I’ve been making progress with vestibular therapy and my balance is improving, although fatigue or being out in the summer weather aggravates things considerably.
It’s looking increasingly like the basic problem may be in my neck, so I have just begun physical therapy on my neck and we are looking into referrals to specialists who might be able to arrive at a diagnosis.
Meanwhile, I’m continuing to operate at diminished capacity. The tinnitus remains constant. There is still a lot of fatigue and brain fog and some periods of fuzzy vision. The neck pain, headache, and tingling come and go. I have to be careful not to do too much on any particular day and sometimes need naps. I am cutting back on my responsibilities and activities, which is frustrating.
Stay tuned…
Grandma has developed a trigger finger. It’s a cute name, but not a cute condition. Basically, the tendon rolls over the bones in the knuckle at the base of the finger down where the fingers meet the rest of the hand. This makes the finger bend down and catch so that it can only be straightened by taking the other hand and prying it out of the bent position.
And it hurts!
I brought her to see the orthopedic who had done a prior hand surgery for her – and who had done shoulder/arm surgeries on both my husband and me. He is the best person in our area to see for hand and arm things because he has done advanced fellowships.
He injected cortisone into the tendon sheath and, after a couple of days, the pain was gone. After a couple of more it would occasionally catch, but could be unbent without having to be pried open with the other hand.
In a few days, we have a follow-up with the doctor. I’m not sure what he will recommend. The original finger is still catching once in a while and now another finger is getting in on the act. He can do an in-office surgery, which may be necessary to have a permanent solution to the problem.
Trigger finger – not just a gangster term.
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “finger.” Join us! Find out how here: http://lindaghill.com/2016/02/05/the-friday-reminder-and-prompt-for-socs-feb-616/
Joanne Corey 