Plan KA Day 1

As I said in my previous post, I am re-committing to PLAN KICK ASS to better my health. Here's how day one went down. In the words of my husband "You crushed it!"

My lunch was high good fats and high protein. Three scrambled eggs with mushrooms, onion and peppers all served up like an open face omelet. No gluten free bread and no cheese. It was delicious and kept me feeling full fo a very long time.

Dinner was very veg heavy. My amazing husband planned, bought and made these beautiful sweet stuffed peppers. I made the brown rice and salad with tomatoes and cucumbers.

I don't have the spoons to make my own salad dressing, but this is the BEST Italian vinaigrette I've found. 

Every morning I still indulge in my wonderful cup of Java. I'm not ready to give that up yet, but I am trying to make that my only sugar for the day. I'm also cutting out cheese except for Goat because it's very low in calories, high in protein, full of good fat and Goats are treated better in my country than dairy cows. So that's just a win all around. My husband minces fresh herbs in it and OH MY! It's amazing.

My snacks have been fresh fruit and these bulk bin beauties. Raw almonds.

We were eating a name brand's "Smokehouse" almonds until I looked at the ingredients. Ack! Always look at the ingredients.

As far as pushing myself physically went, I seriously took that to heart. I walked my puppy girl by myself around the block (a really big deal for me), did about 3 loads of dishes, 5 or so loads of laundry, scrubbed out shower/tub, cleaned the bathroom and tidied up. I laid down for a bit, but honestly felt too full of energy to sleep! 

My body did really well till around 6PM. Then my muscles went into revolt. Cramps and soreness kicked up, but I expected it.

I like Friday to be my "big push" day because then I have the weekend to pull back a little bit.

So far, I'm really glad I made this change. My husband is 100% on board and being really supportive and amazing. GO PLAN KICK ASS!!!

What the heck body?!?

At 9:30AM this Monday my body decided to freak out. I was at work and suddenly felt zaps in random parts of my body that made my muscles twitch. It felt like being mildly electrocuted. I also felt very weak and dizzy. My vision blurred and I struggled to focus. My face felt more numb than usual and it was a challenge to talk. I held on for as long as I could, but finally texted my husband to come and get me. I was afraid to drive given the dizziness and blurred vision.

My gut reaction was to go to the hospital. Even to call an ambulance as I wasn't sure how far I could walk. But what would they do? What could they really do? I didn't feel like I had experienced a stroke. My heart felt fine. It felt like my Myopathy had suddenly gotten worse for God knows why or how? I have a rare condition and there's nothing the hospital can do about that other than test me for a stroke. It would be a waste of everyone's time.

Instead I had my husband call my doctor and talk to the advice nurse. They said to go to the hospital. I refused, laid in bed and cried. My husband comforted me and made me feel a lot better. All of this was very scary. My little dog also gave me comfort, refusing to leave my side.

She even lurked in the bathroom with me. 

I deduced that I might have a bladder infection and that could have sent my body into "CODE RED! SEND ALL ENERGY AND RESOURCES TO INFECTION FIGHTING!" I started antibiotics yesterday and am feeling a little better today. I hope to go back to work tomorrow.

It's terrifying how fast my muscles can just shut down. How even talking can become a big challenge. I know it was scary for my husband to see me like that too. Chronic illness isn't for the weak! Every day is some kind of new test. I'm so lucky to not have to go through any of this alone.

All the feels

Oooooh chronic illness. You really know how to kick a girl in the butt, don't you? It has been a while since I posted because... you know... life and spoon sucking and stuff. Working 40hrs a week while struggling with my body pretty much takes 100% of my efforts daily. I'm constantly scared that I won't be able to work in the near future, but I tell myself that the only thing that would make that happen is if my voice were to be affected. Pretty much everything else I can work around. For instance, I just asked my employer for a voice to text software that will work with the programs we use.

I saw this taped to a bookshelf at a thrift store. I love little surprises like this!

I'm meeting my new neurologist this Tuesday and my husband can't come with me. I have to be a big, brave dog all on my own. I've got this! The new person is supposed to specialize in Metabolic Myopathy, so I'm hopeful. My old neurologist will also be there, so that will be helpful to have that support too.

Curious about my current symptoms? I know you are!!!

June 2019 Current Symptoms:

• STILL can't have an orgasm (that really sucks)
• Muscles shake after short burst of high intensity use
• Muscle cramps and spasms randomly everywhere
• Loss of muscle strength and energy through the day
• Feet go into tip toe frequently when seated
• Right lower eyelid spasm/twitch frequently
• Pain in arches of feet unrelated to activity
• Ptosis of both eyelids (right is worse)
• Increase in asthma sx (4 nebulizer treatments this year and 3 rounds of Prednisone)
• Occasional dry mouth
• Occasional choking
• Occasional headaches (from the COQ10?)
• Occasional constipation unrelated to food
• Occasional delay of urination (muscles won't relax)

Right now I'm on 2,800mg of COQ10 to try and help my Metabolic Myopathy (caused by a gene mutation.) Reading other people's experiences I feel fortunate to have been diagnosed so quickly. It didn't feel quick to me at the time, but for some people it takes years and years. 

Currently I'm trying to find other people with a COQ6 mutation who have Metabolic Myopathy. I've found one who I think does, but they're in India and English is a bit hard for them. I found another 5 who have very similar conditions that come super close and include COQ10 Deficiency. Of those five all are in a wheelchair at least as much as I am, if not more. Some have a breathing tube and feeding tube. That's a bit scary.

I'm glad I live in a time where I can hop online and get information and try to find other people on such a rare condition. In the meantime I have my husband and my family to share my feelings with and that's also very helpful. 

Back Breaking Work

My back MRI results came in very quickly. As for the MRI itself, let me just share that it was my second experience ever of having my back hurt so much that it went into spam. A 90 minute full back MRI is no joke. I used every self-soothing resource that I had in my big bag of tricks and still almost had a full panic attack (just from the pain.) I'll be avoiding those in the future as much as I can. But, the results were useful.

Always make yourself a "cheat sheet!"

My back isn't much worse than it was 17 months ago. The biggest changes were in my lumbar area. I have a fissure (that's new) and a "disk protrusion" that's hitting a nerve. That's coincidentally the most painful spot in my back. 

The results can be very hard to read, so I found "mapping it out" on a spine printout to be really useful. I'm not a doctor and always have to look up what all the words mean and turn it into English. Then it goes into my personal medical binder for future medical appointments.

The bottom line is that they found nothing that would explain my muscle weakness and muscle fatigue. That means it's likely not coming from back problems, but from something else (like RA?) 

This Wednesday I see a new neurologist, so hopefully she'll have some more insight into the mystery that is my body.