Mini Me Health Update

Life has been full of surprises over the last three months. Here’s a snippet of what is going on. 

Rheumatologist

I saw a new Rheumatologist to asses all the joint and leg pain I was having. She basically dismissed me saying that unless the test come back with something, she would not need to see her. Then the admin calls to tell me to see my immunologist and that my kidneys weren’t working properly. I see the doctor’s report and found out I have Sjogren’s Syndrome and they didn’t even tell me. Time for a new Rheumatologist. 

Tardive Dyskinesia

My Tardive Dyskinesia is still a problem. I’ve been on Ingrezza for two months but have experienced little change. I guess I don’t fall into the percentage of people who get relief in two weeks. The side effects are brutal. I fall very easily and have many dizzy spells throughout the day. At $7500 a month you would expect miracles, right?

Dementia

The Lyme virus went to my brain and continues to wreak havoc. My memory has been much worst this past month. I can be thinking or saying something and mid-sentence I forget what I’m talking about. I have been looking inward to decide if this is the next level downward. I’ve decided to kill myself before I lose all of my memory. I’ve been wondering if now is the time. It may be selfish but I think it’s better for my husband. I was a caregiver to my granny and she had dementia. The day she forgot me was a sad day. Dying slowly, every day the hospice nurse does everything for her. My granny didn’t know anything and was laying in a bed waiting to die. I don’t want that for my husband. 

My doctor has scheduled me to see a Neurologist to talk about the newest medication available and the side effects. When I hear brain bleed I get a bit nervous but I’ll listen to him. The monitoring while on the drug is crazy, you have to have a PET scan every month. 

Brain Surgery

I had my first brain surgery when I was 14 years old. The doctors would not remove the tumor because it had grown thru my skull and I was so young.  In 1997 I had the surgery, boy I don’t recommend it. They took out about a quarter of my skull and replaced it with surgical material to make up for the loss of the skull. Fast forward, the material used has shifted and is pushing on my skull. I have an appointment to see a Neuro Surgeon to see if another surgery is needed.  Surgery is very pain full, I had close to 75 staples in my head. I don’t want to go thru that again. Maybe he can do a smaller procedure than last time. Did you know it takes forever for your hair to grow back after it’s shaved?

Mental Illness

I had to stop one of my meds due to the Tardive Dyskinesia and we’re making changes to the amount of each drug I already take. I’ve increased three medications so far. I’m hoping to not have to start a new med. So far this approach is working. I was spiraling for a couple of weeks but we’ve increased the dose on another med and I’m feeling better. I’ve talked with my doctor more in the past three months than all of last year

You’re up to date.

What have you been going thru?

Melinda

 

5 comments

  1. It’s lovely to hear how things have been going. You pinched my “mini me update” blog post title 😂

    I’m sorry about the rheumatologist. It’s curious that someone can find a problem or make a diagnosis on your behalf without telling you. Grr! I’ve had that before. You often don’t find out unless you get access to the medical notes like you found out, so I’m glad you got to see those. Did she do the test where paper gets put into your eyes for the diagnosis?

    I’m especially sorry for all the dizziness, easy falling. That sounds miserable, and dangerous! I’d definitely want miracles at $7,500 a month. Gold-covered miracles.

    I’m sorry again also for the cognitive issues you’re having. I can only imagine what it’s like. I do get very frustrated with regularly forgetting basic words, not being able to string a sentence together, sometimes not be able to say the word at all like my mouth won’t move the way my mind is telling it to. My memory is shot. I was a more cerebral person growing up and to feel the impact of losing it all is immensely angering and disheartening all at once. I of course don’t know what you’re going through and what the situation is really like for you, but I do know that killing yourself is a comfortable plan B to have to hand. It hurts my heart to see you write it about yourself. I also know your husband may prefer to make the decision for himself as to whether he’d prefer you gone, because I bet my arse he absolutely would not. I don’t know how fast things can progress but I have hope – hope that you can keep going, hope it won’t be the end of the road like you may feel it could be soon, hope the neurologist will be insightful and meds can help somewhat. Sending love 💜💙💚💛🧡

    Caz xxxx

    Liked by 1 person

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