General Update – 23 July 2020

Rough day so far.
Autoimmune flare. Breathing is problematic. Pluerisy. Coughing. Shortness of breath. The only good thing about it is it makes my already sexy phone voice more husky, so possibly more sexy?

Immune system is being a shit and not letting things heal.
Anemia is manifesting, it was made worse with this last menstrual cycle. Heavy. Like elevator doors from The Shining. Clots. Flooding. Likely contributing to that air starved feeling.
Fighting a bladder infection that I initially thought was an International Cystitis flare. Second one I have had since I went into isolation. Fuck you Covid, for so many reasons.

Processing grief. Rummaged about in my Other Mum’s craft room and brought her serger sewing machine home. Also an encyclopedia on Needlework techniques. I feel like a thief. Her spirit insists I am not, and logically I know this. Grief is a bitch though. As is accepting and processing hard feelings.
Thank every God that has ever existed for therapy. I would be a royal mess right now without the skills I learnt in the last two years.

Tears. Lots of tears. Freely flowing. Which has been hard to come by the last few months. I may still hate crying but I have fully accepted how helpful it is for me in processing my emotions. Tears help your brain get rid of excess brain chemicals. ADHD means when I have emotions, of any kind, they are literally bigger. Higher levels of the brain chemicals associated with said emotions. So crying literally helps get rid of the emotions I am processing.

I get to wear my new shirt though. I don’t ever want to take it off. Made it with my bestie, yesterday. Favourite style of shirt, thanks to my other bestie for picking it out, AND camo print. Totally my jam. Witches. Pretty ladies. Red. Sparkles. Deliciousness. It’s seriously the best.

“Do You Want To Live Deliciously?”

Since solids are problematic before noon I made my version of bullet-proof coffee. Ups the calories. Lactose-free 10% coffee cream heated in the microwave, a tablespoon of butter, froth with an Aerolatte for as long as I can stand it. Pour into coffee. Add cinnamon. Stir. Enjoy. Delicious. Self-care. It is a lot of steps though so my executive function isn’t always feeling up to it.

The kiddo’s put the new She-ra on again so that’s fantastic.
I have also been unintentionally off of my psych meds for a week now. Issues with the pharmacy and clinic communicating about my refill. Currently awaiting a phone call from the clinic to get the refill sent to the pharmacy. Bleh.

Asshole Ankle

I remember as a child, the joy of leaping from trees, that high of free fall, the solid thud when my feet hit the ground. While I have never liked falling, it never used to slow me down. When my disorders flared and kicked in falls became devastating. My first serious fall was the first year I lived in Surrey. I was trying out for track and field, the relay race, and totally bailed into the gravel. It was my right knee that failed me then. I started seeing doctors shortly after that, I was 14 I believe.

Last night I had my first serious fall inside. I have bailed a few times when wandering about the forest and stuff but most of those could be traced back to a physical object of some sort making my uncooperative meatsuit fail.

Last night all I did was lift up onto the ball of my right foot to climb up onto my very high bed.

I felt my ankle give, it’s not an unfamiliar feeling. Since I severely sprained it dog walking it’s always been extra pissy. The issues with my metatarsal joints just made worse by my defective connective tissue being stretched out more by the injury. So that didn’t surprise me. What did surprise me was landing on my back on the floor. Usually I can compensate and kind of bypass it, kind of hauling myself up with brute strength.

I guess the combination of barometric pressure crash, plus exhaustion, plus everything flaring…but yeah. Regardless I hit the floor hard and while I have no bruises I am tender, both physically and mentally. I needed to use my cane in the house for the first time. Which also happens to be the first time I have used the cane I got from my Uncle, who passed away in November.

I had a good cry about it then put the new rubber bottom on. It’s a lot nicer to use than my all metal one, I assume because the wood absorbs some of the shock. I’m going to have to talk to the doctor about this ankle. Since getting my orthotics the ankle pain is rare. Obviously now I know it’s still fucky and I might need more effective hardware to protect the joint.

Interstitial Cystitis Flare – 08/07/2019

Content warnings: blood, intimate details of my nether regions, urine

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So.

Things have been epically stressful in my life since June 24th.

I thought I was taking enough care with what I was eating and drinking. After all, it’s been YEARS LITERALLY since my Interstitial Cystitis was any sort of issue. It’s been so long I had to look up relief methods.

The flare isn’t entirely unexpected, but it still caught me a bit off guard. Symptoms include high pain levels (ache/burn) in my nether regions and lower abdomen, bladder spasms, urgency, light bleeding.

I have medicating with CBD/THC, acetaminophen, naproxen, and cyclobenzaprine. Drinking lots of water. Avoiding all trigger foods.

Check In – March 3, 2019

I am feeling very unwell today. The barometric pressure has been doing this rollercoaster thing for the majority of the winter. It’s been really rough. Particularly with having to recover from surgery.

The symptoms I’m having right now are the ones that really get to me. I’m used to pain and stiffness and having to gently push through it. These symptoms I can’t really alleviate the I can with pain and stiffness.

The list includes: dizzy, exhaustion, lethargy, light headed, unsteady on my feet, upright is hard. The longer I remain upright, the harder it is to do so. Shakes, swelling, feeling like I’m going to faint. Ugh.

Annual Rheumatologist Appointment 2018

Saw my Rheumatologist today[Wednesday, September 12th 2018], here is the yearly update:

All labs are good.

My arthritis is very well controlled, can’t do much about Angry Ankle and Pissy Foot, it’s just life with arthritis. Meds remain unchanged.

Which are:

Hydroxychloroquine(dosage based on wright), Naproxen 500mg × 2 daily, Acetaminophen as needed, Cyclobenzaprine 10mg x 1 daily, Rabeprazole 10mg x 1 daily, Cannabis as needed.

The extra aches and pains can be attributed to my Chronic Pain Disorder. My Rheumatologist told me today she really doesn’t like the name Fibromyalgia because it implies muscle pain, when it is really a pain disorder. Things hurt. There doesn’t need to be anything specific even there for it to hurt.

Undifferentiated Connective Tissue Disease is still very mild. It’s not even something we talk about anymore.

She had not seen my physical or mental assessments from WorkBC. She agreed that, physically, I am capable of gentle part time work.

Was very insistent about me starting an exercise program. Just walking isn’t enough. Maintaining mobility as well as keeping muscle tone is important.

My arthritis symptoms are overall BETTER because I’m working part time.

Eyebrows are developing annual mild psoriasis. A new spot, about the size of a loonie, has appeared on my left ankle. So now my ankles match. It’s barely noticable right now but it was documented.

So overall my I’m holding up rather well in the physical department.