Showing posts with label PKA. Show all posts
Showing posts with label PKA. Show all posts

Wednesday, October 7, 2020

Plan Kick Ass - The Revenge!

I've talked in the past about my addiction to food. It has been a huge comfort this last year that I haven't been able to work. I've also tried different versions of what I like to call "Plan Kick Ass." In short PKA is always my attempt to regain control over my eating and diet. I'm not even including "health" in there because I honestly feel I'm as "healthy" as I can be. 


It's my enlarged fat cells that are the issue currently. My scale reached an all time high last week and I didn't like it. Since I can't exercise much the only way to change that situation is by intake. But there lies the trouble. I LOVE FOOD!!!



But there are things I love more than food:

  • Art and making art

  • Talking with family and spending time with them

  • Snuggling with my husband

  • A good TV show like Brit Box's Miss Marple series

  • Walking my puppy

  • Playing with my jewelry (a la' Elizebeth Taylor style)

  • Sipping coco or coffee under soft blankets (especially if it's raining outside)

  • Watching a movie with my Mama at her house

I bet there's even more than that! That's just off the top of my head. So why make food my number one? Because it's easy, something I have to do anyway and always there. But I'm working on it.


Thursday, March 26, 2020

What's New?

This time last year I was responding well to my Mito Cocktail. I had a real increase in energy and stamina. I suspect what happened with the Mito Cocktail is that my body just adjusted to it and it stopped working as well. 

That happens to everyone with almost all medications, even recreational drugs. I'm no longer taking the Idebeone. I tried it for three weeks and it didn't work for me. I had an increase in cramping, spasms and muscle pain, plus it upset my stomach. So two weeks ago I went back to my COQ10 and I feel like I'm still adjusting.

I continue to be less fearful than a year ago and am still rocking a bikini. I also take care of my "tasks of daily living" independently. I even made a quick store trip with my son yesterday, just the two of us. That felt really good.


As far as medications go, here's what I'm currently taking:

Prescriptions Taking
LevoTHYROxine 125 mcg AM
(Pregabalin) Lyrica 150 mg BID
(Duloxetine) Cymbalta 60 mg PM
(Lioresal) Baclofen 20 mg TID
Albuterol Inhaler PRN (apx 6 puffs spread out daily)

PRN
Acetaminophen 500mg +2 PRN
(Rizatriptan) Maxalt-MLT 10mg PRN
Albuterol Nebulizer (DME) PRN (not used yet)
5:1 (CBD:THC) Tincture or Edible PRN

Supplements
COQ10 300mg 5x a day (1,500mg total)
L-Arginine 500mg AM
Vit. D3 2,000IU AM
Wild Alaskan Fish Oil 1,400mg BID AM/PM
Biotin 1,000mcg AM
Magnesium Citrate 250mg BID AM/PM
Potassium 99mg BID AM/PM

MigreLief supplement BID AM/PM
B-2 400mg
Magnesium (citrate and oxide) 360mg
Feverfew (whole leaf & extract) 100mg
I have a fantastic A Team behind me now including multiple people who know about Metabolic/Mitochondrial Myopathy. My neuro muscular specialist just suggested I try epicatechin to see if it helps my muscles at all. She said there's some good results with it helping protect the heart of people with MD. I will give it a try since it's an over the counter supplement.

She also reminded me about the muscular benefits of Epsom Salt Baths. It's not easy for me to get in and out of the tub, but it is possible. I will try and add these to my regular routine as well. We have a big bag of it from Costco.

The biggest news for this month is I got adjustments for my big chair "Dory". I got a new seat, new headreast and (*insert drum roll here*) KNEE ABDUCTORS! That's a huge deal. No more leg straps for me!
Also fantastic is that she's on a bit of a tilt back so I don't slump over myself when my trunk muscles fatigue. Stamina is not my friend.

"But what about Plan Kick Ass?" 
I've integrated a lot of it into my daily life. I try and eat more fish and veg then I do land animals. I move as much as I can and in general make my health a priority. Of course I still have things that aren't the best for me, but I try and notice how food makes me feel after I eat and stick to the things that make me feel good.

Here's some things I'd like to change, work on for the future:
  • Stretch twice daily
  • Take Epsom Salt baths
  • Try the epichatechin
  • Explore CBD more
  • Go back to smoothies every morning



Lastly what's new with me is that I'm trying some high CBD, low THC products to help with pain and muscle cramps/spasms issues. I don't like taking Acetaminophen for pain all of the time and I don't think it honestly helps that much anyway. It's hard on my liver and kidneys and can cause stomach irritation if I take it too often. I feel there's less of a physical risk to my health taking a more natural product. So far I have tried oils, tinctures and gummies. It's legal in my state and very available. I'm open to trying almost anything that could improve my quality of life.


So that's where I'm at medically right now. Taking things day by day and focusing on the positive. I'm keeping connected with my friends from my Muscular Dystrophy support group and family. That's always helpful for keeping my mood up. And my mom has been stuffing me full of delicious foods. I try and get outside to get some sunshine when I can. Now I'm off to make a smoothie!




Tuesday, October 29, 2019

Plan Kick Ass - Day to Day

"What's going on with Plan Kick Ass?" I'm glad you asked! It has been a little over a month since I did an update. Here's how things stand. 



Food is good.
I don't always have the spoons to make stuff from scratch.
Tomorrow is another day.

Here's the areas I'm doing well at. Eating fresh and local I think I have down. I'm also eating much more veg than I was! I make a smoothie when I can (like I need to make one today). I'm stretching at least once a day, typically a few times. I have "naps" down solid and I really reduced my work week. Ha ha.  


Bruce is a napping PRO!

I've been asking for help when I need it, but my husband and mother usually want to do things for me before I ask. That makes me stubborn and actually LESS likely to ask for help. I need to talk to the two of them about that. 

I live in a food oasis where we have tons of fresh, local, delicious food constantly available. And let's face it. Food and eating it makes me happy and I need a lot of "happy makers" right now.


Our beautiful Farmer's Market on Saturdays

Roasted fall veg (that my husband wouldn't touch)

Here's where I'd still like to improve.

  • Eat smaller portions.
  • Eat more seafood
  • Eat less sugar (No, it doesn't help. That was a fluke day)
  • Eat less dairy
  • Back to no soda (As soon as I finish my last Ginger Ale)
Most things I try (power drinks, sugar, Magnesium, etc...) seem to work great for a little bit, then taper off. So I'm not doing the power drinks regularly because there's just too much crap in them for what little I get back anymore. 

Roasted chicken (that my husband enjoyed)

On the medical side my doctor is sending me to an ENT to rule out any vestibular causes for my dizziness. I'm willing to try anything because not being able to drive BLOWS!


I'm STUFFED

I've been struggling with constant constipation for a long time now. Many medications I'm on cause constipation. Then I typically ta...