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!