Following up from yesterday’s post, my specialist appointment is resulting in an order for the next step toward diagnosis, an angiogram to evaluate the blood vessels in my neck.
I’m not sure how long it will take to get on the schedule but I’ll let you know when I have more information.
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Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2025/01/03/daily-prompt-jusjojan-the-3rd-2025/
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…
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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/
Happy Valentine’s Day!
As I write this, I have a dessert treat in the oven for this evening and E and L are sharing a Valentine’s Day tea in London. We are happy that they have a chance to spend Valentine’s Day together in this year of being separated by an ocean most of the time.
It is also the birthday of one of my cousins. His mom, one of my dad’s sisters, always wanted a son born on Valentine’s Day and she got her wish.
Unfortunately, she couldn’t have another child because she was Rh negative and her son was Rh positive. Because she was now sensitized to Rh factors, her antibodies would have attacked the blood of another Rh positive child. If the baby survived, it would have needed an immediate total blood transfusion. Most couples in those circumstances chose not to risk a second pregnancy.
Like my aunt, I am Rh negative, but I was fortunate to be pregnant after the development of RhoGAM. I had one shot during pregnancy and a second after I gave birth to E, who is Rh positive, so that I would not develop antibodies to Rh factors. This enabled me to later have daughter T without risk to her blood.
Valentine’s Day is another day to be thankful for family and for good medical care.
I was not aware of TTTS but want to help build awareness by sharing this post from Meg of Fisticuffs and Shenanigans.
This post is a clear departure from my usual nonsense, but it’s important to me for reasons that will be terribly clear. My story ends happily. It ends with the last 12 years of laughter and dirty, loud chaos that only boys can bring, but I came horribly close to an outcome too terrible to consider.
After finding out that I was carrying identical twins in my 18th week, it wasn’t long after, at 22 weeks, during a routine ultrasound, that a significant problem was discovered. Because, most of the time, identical twins share a placenta, a large number of problems can arise, and in the case of my sons, they were not sharing it equally, and had an “Asymetric Placental Share” or “Discordant Growth”. They were 18 days apart in size, and we were told there was nothing to do, but go home and wait two weeks for another…
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Joanne Corey 