PKA 3 Weeks In

I just finished week 3 of "Plan Kick Ass" (PKA for short) and here's what's going on with my body. 

I was able to make the connection that I will have at least one period in the day where I just hit a wall. It's literally like being unplugged. If I don't stop what I'm doing and immediately go to bed then my body rebels.

What I mean by "rebels" is my vision goes unfocussed, I see stars, see double, I feel exhausted, my body hurts and I feel physically weaker. It becomes hard to literally keep my eyes open. I have been trying out energy drinks with caffeine and vitamins to help me over this major issue and it has been helping a little. But then I accidentally found something this week that could help even more. SUGAR.

I ate some (...ok... more than "some") red licorice one day at work and I noticed that I felt a lot better in the afternoon. The following day I had 2 teaspoons of honey instead of the sugar and I noticed that it still felt better than the energy drinks that I was trying. Now I'm suspecting I might have some kind of glucose metabolizing issue or mutation? I'm going to try and do some research on it.

As anyone with a chronic illness knows, we are our own best doctors!

Speaking of, here's where things stand medically as of today.

• My primary care doctor 100% supports PKA (I knew he would.)
• My insurance denied my genetic testing for other mutations, but my husband is going to work on an appeal letter this weekend.
• I'm not seeing my neurologist anymore because we hit a treatment wall after the COQ10.
• The Baclofen has been a life saver with the muscle cramps, twitches and spasms.
• I'm still pushing myself physically. I even started wearing my Fitbit again!
• My husband and I are still trying to eat whole, high protein foods.
• I'm working on reducing my portion sizes to help with weight loss.
• I'm napping and resting every day I don't work.
• I'm down to 3 days a week (30hrs) of work instead of 4.
• I've been approved to work from home 1 of those 3 days. YIPPEEEEE!

I also took the stairs today at my doctor's appointment, the first time in two years. I went super slow, but I did it! Going down was MUCH easier.

Next up... current symptoms for September 2019.

(My last symptom share was June 2019)

Not Alone

When you're battling a chronic illness it's very important to learn that you're not alone. I recently joined a Myopathy Support Group online. Many people in the world struggle just like I do with something not so cut and dry to diagnose and that has no real treatment. 

Here's a sample of what I found relatable and helpful when it comes to myopathy.

"I’m similar to you, acquired myopathy due to steroids and/or cyclosporine for another medical condition but other extras sprinkled on top to keep life interesting"

"After reading your story you have my admiration. Mine seems to be through having RA. I'm in the same situation concerning work.. still waiting for some sort of help off the medical profession."

"My doc claims mitochondrial also and put me on coq10. Now i am a bit freaked. My ins refuses to pay for dna testing. What now?"

"Lyrica is my life saver as well! No idea what I have either; many strange, wrong diagnoses. I've come to accept that I'll never know. I don't care anymore."

"I’m going through a similar situation but doctors keep passing me around. At first I had mitochondrial myopathy. Then it’s fibromyalgia. Then it’s all three. Mitochondrial myopathy, fibromyalgia and ddd with herniated discs and spine tumors with stenosis."

"I've first was diagnosed with myopathy in 2012, the doctors couldn't quite determined which kind of myopathy i have, i started going to different doctors and it really got a toll from me and i felt really down... for such an optimistic person like me being down was the worst thing i could think of, so i decided to just stop! I said to myself if i get into a sick person state of mind and let my disease define me that's a terrible situation, worse than the actual disease...so i lived my life regularly on some kind of deny, some kind of a lie i tell myself...for about 5 years... but with recent changes in my life and in my mind, now i feel strong enough to deal with anything life will throw at me, and do it with a smile on my face and thankful for the things i have in my life, not thinking about what i don't...  sooo, bottom line... this is the tip of my story... nice to meet you all, I'm taking my genetic tests hopefully really soon...if you have any tips for me regarding life style nutrition or tips in general i'd love to hear them."

"...So I'm ready to just be done. I'd like to get back to my life and as of October 6th I'll only be seeing my docs for yearly progression checks and that's just fine with me. It was just getting so daunting to try to live my life in between doctor visits so I'm just going to NOT do it anymore."

"So if your dna testing came back unrevealing, does that necessarily mean you don’t have myopathy?"

"OK I have been posting about food. And at this point in time I am taking guesses as I cant afford the DNA testing. But my doc suspects its animal proteins..."

"Hi. How does everyone cope with the leg muscle pain. Can't believe how bad it gets... The pain can cause you to question your sanity"

"After 41 years and getting a diagnosis of what was causing my muscle weakness (myopathy); my doctor told me there’s nothing he could do for me. He did explain that my body doesn’t process ATP, the final breakdown of carbohydrates into all the cells in your body. Also, I had severe exercise intolerance, no endurance or energy and extreme fatigue."

"Anybody see the Netflix show Diagnosis? First episode was a girl with Myopathy. I knew it almost immediately it was a metobolic myopathy. No dr had ever mentioned it or offered genetic testing... NOTHING. Breaks my heart people with rare disorders have to get picked for a show for help. I have had to do my own work and know more than most drs about all these disorders now. That is just sad to me. I know they can't know every disorder off the top of their heads, but she suffered for years and years... Like most of us, I suppose."

"I was originally referred to a neurologist because my gp wanted me to have a muscle biopsy. I had been having severe muscle cramping and severe leg and arm weakness...I don’t know what to do and I almost feel hopeless."

"out with family but legs feel weak have hard time walking even with sitting for a but feel like legs could give way (but some how they keep me up)"

"-it never stops going to appointments, I like my weekends, I take them seriously, September 3rd I see the surgeon to schedule muscle biopsy but my neuromuscular doctor also wants me to see a dietician, i also see 11 other doctors for other issues but I'm exhausted, you all must be exhausted, I am.."

"I've quit chasing answers. I was able to retire on disability. My wife is a teacher and works but I still have kids at home. One in college. I was chasing answers from Ohio then on to University of Michigan, a VA Hospital in Michigan, to John's Hopkins in Maryland and they sent me to a Mitochondrial Specialist at University Hospital in NY City. (there are others) 
I've been miss-diagnosed several times like some of you, ALS, MS, and then Mitochondria Myopathy. I do have Myopathy and Neuropathy confirmed from two different muscle biopsies and other test. I'm a diabetic as well. Whatever I have I quit chasing it. Too much money in medical bills. 
My family doctor and I just treat symptoms. I take coq10, vitamin D, Tramadol, magnesium etc. I've tried many creams and other remedies for muscle pain and cramps. I do feel better than I did 7 years ago but I have to pace myself and plan activities ahead of time.
I have to have my sleep and rest or I won't make it through the day.
I am exercise intolerant and very heat sensitive.
I use a cane for short walking and a scooter or power wheelchair for longer distances.
I'm just sharing so everyone knows your not alone."

Prepping for the week

Meal shopping and prepping is something my husband and I (mostly) do together. Our town has a magnificent farmer's market that we try to go to on Saturday mornings. We stock up on eggs, fresh fruits and veg and occasionally cheese and meat there. 

I try to be careful where my dairy and meat is sourced from and there's a fantastic Scottish family farmer that we love. His eggs are beyond compare, each one tasting like golden love. (I received no kick back for this endorsement, but wouldn't say no to some free eggs.)

My husband has taken to doing almost all the meal prep for the week. He'll fill up all our water jugs then sauté up a giant batch of peppers and onions. We use them on almost anything, but have especially been enjoying veggie fajitas. 



I try and boil eggs for the week (for a work snack) and prepare my lunches ahead of time. This week is a delicious veggie, gluten free pasta salad with fresh herbs and veg from our trip to the farmers market. Delicious! (please read this in the voice of Gordon Ramsay.)

Hummus, bananas and yogurt are also a must have for the week. 

Aside from all this delicious grab-and-go food I like to make sure I'm also mentally prepared for the week. My job is very intense, emotionally charged and can be draining, so every little thing I can do to relax and re-set is very helpful. This means having clean clothes, taking a big nap, not taking on any big activities and feeling physically ready. 

Sometimes that looks like giving myself a facial or taking a bath (if my muscles are doing well enough to get in and out of the tub like that.) This week I got my nails done in a fun "out there" style that I've never done before.

Dragon Eye Nails

My husband and I also come up with a meal plan so we know what to make when we're tired and groggy after a long day. We try and cook together, but some nights all I can manage is keeping him company while he cooks. Just like with grocery shopping. We occasionally go together, but other days (like today) he runs off with a list we made to do the leg work.

I'm adjusting slowly to doing what I can when I can and saving energy for the really important things. It still isn't easy. But having bitchen nails does help.

Plan Kick Ass Progress

I'm starting week three of "Plan Kick Ass" now and I'm seeing improvement. I'm much stronger that I was before and my joints and muscles hurt less. I attribute that to pushing myself physically. I've been walking my dog, not using my wheelchair at work, taking short walks at work, stretching daily and doing chores like gardening and cleaning. Things I haven't done in almost two years!

My eating is going well. I notice that the healthier I eat the worse I feel when I eat something not the best (like gluten free mac n' cheese.) If I stick to whole foods I do well. Now I'm going to focus more on portion size.

We're in the thick of tomato and pepper season where I live and they're delicious! I'll be sad to see them go soon.

My stamina is the same and I still feel the need to nap daily. I am slowly decreasing my Cymbalta and that seems to be changing my sleep. I'm now down from 60mg to 30mg and my mood is still really doing great. I attribute that to the increase in exercise and the sense of accomplishment I feel getting more done and taking charge of my body.

My weight is still an issue for me and something I'd like to work on. Though I feel I'm heading in the right direction. 

And of course... here's your gratuitous puppy picture!

Post Brain Tumor Henna

I used to color my hair at home all of the time. Black, red, blonde, chestnut, burgundy and every color in between. But I have never tried henna. The reason for this is you can't use henna on hair that has been chemically processed, and my hair has ALWAYS been chemically processed. That is till I had my brain tumor. I've been natural ever since.

Recently we went to a party and I saw all the women with their fun hair colors. Even women older than me with pink, red, two tone fun hair. I looked at my pictures and thought "I WANT FUN HAIR TOO!" Now my natural color may be nice, but no one would ever say that it's fun. I'm a fun woman and I want fun hair.

I was also going through some old pictures and I saw a few with my hair red. I always loved the magic and myth around a flaming head of hair and Maureen O'Hara is one of my heroes. I thought coloring my hair again was out for me because I want to keep away from chemicals. But then I remembered henna. 

People have been using henna to color their hair for thousands of years. It's a safe, all natural, chemical free process. The one I picked is even organic!

The directions said for an even brighter red to steep some hibiscus tea (which I just happened to have on hand!) and use a little bit of lemon juice or vinegar. I used 2oz white vinegar and 12oz tea mixed together and steeped overnight.

Ok... it looks EXACTLY like poop. Luckily it doesn't smell bad. 

First I painted Vaseline all over the parts of my skin that I didn't want stained. Then I liberally applied the henna mixture all over my hair starting at the crown. Next I wrapped it in plastic wrap (about 3 layers.) Then I topped that off with a warm towel. I did henna my brows too. Very carefully with a fine paint brush and lots of Vaseline around them. I then blasted them with a hair dryer for a few minutes as henna likes heat to activate. 

Four and a half hours and three pairs of gloves later...

I really love the results! Unlike chemical dye it also didn't burn or hurt my scalp. Next time I will use even more Vaseline as I still got some staining, but it wasn't as bad as I'd feared. The color keeps curing for the next two days and will darken a little bit. 

The process was also a fun History/Science/Cultural Anthropology experiment for me. I could picture a community of women taking the day off and all doing henna for each other. I'm sure they would have group grooming days like that. I also thought of the Egyptians who were documented to use henna liberally. It's amazing that it could do as good a job as chemicals without all that damage and toxicity. 

I think it looks really natural. I will definitely do it again.

And here's a gratuitous puppy picture just because.

Plan Kick Ass Week 1

Don't make the same mistakes

This is Plan Kick Ass - Phase 3 for a reason. My body has undergone a lot of drastic changes during this last year (even not including my brain tumor.) But I also have some tendencies that I'm trying hard to watch out for this time because they did not serve me well in the past.

1) OBSESSING about food. I'm totally an all or nothing type of person (something I'm working on.) In the past I have used food tracking apps. And I don't just USE them, but I over use them. Photographing and tracking everything that goes past my lips. This is a time suck and it has never helped me keep weight off.

Wait, Did I just eat 4 almonds or 6. DAMN!

2) OVER exercising. I actually caught myself yesterday thinking "Maybe I should get a personal trainer or try CrossFit?" Whooooo girl. Reign it in! It's one thing to "gently" push myself, it's another to go too fast and cause an injury, or a well intentioned death by tire flipping. Too much too soon.

Go rest girl

3) Trying too many things all at once. This is an easy one to fall into for me. I get super motivated for change and instead of trying one new thing at a time I do 50. I already was tempted by this one after reading about food that helps with muscle strength. I also read about needing large amounts of Folic Acid and Omegas. I though "I should go get some of those and give it a try." Note, not ONE... but THOSE... meaning all at once. "If one change is good surely 50 is even better?" Maybe, but it's also a) Expensive (and I need to save money now that I'm not working as much. And b) You can't tell WHAT it is that's helping/working when you're trying so much all at the same time. 

One change at a time

Now that I'm aware of these pitfalls I hope to avoid them moving forward. I'll likely pick up some Omegas soon to go along with my "more fish" diet. But that's easy to track.

Today's physical plan is to walk my Sweet girl again then see how I feel. If I'm up to it I'll also do some gardening. Then it's rest, rest, rest.