One good day after another

My "Mito Cocktail" has been helping my energy and muscle weakness in major ways. First came a huge increase in my energy levels. As anyone with a chronic disease/illness knows fatigue is a crippling part of it. Sometimes the worst part. Rest never revives you and you're just always running on zero spoons. So to feel energetic, even if my body disagreed was fantastic.

Next came an improvement in my muscles. I'm not "back to where I was" last year, but I think a big part of that could just be my loss of tone and strength from having to sit so much.

Shopping with just a cart. What a joy!

I see my neurologist April 2nd and have a slew of questions for him. I know the mitochondrial disease is "un-treatable" but I don't know if that means my symptoms will get worse over time, or if we halted the progression with the medications? Should I expect this relief to be short lived? Could I regress back at any time? Or is this my new normal as long as I keep up with the meds?

Having a chronic illness has taught me a lot about living in the moment and doing what you can for that day. I feel like I appreciate things more and I'm much less fearful. I really do make the most of each day, and that feels like a wonderful gift.

For example, I'm a "rubenesque" woman. I've never worn a bikini my whole adult life, but I've always wanted to. In the past I've told myself "I'm too fat. I couldn't 'pull it off.' Maybe when I lose weight I'll think about it." But guess what I got last week? Yup, a hot a$$ bikini. At 46 years old and being a size 22 (US size) I bought a fricken two piece. And not the blousy tops with super high pants kind that look like a one piece. I bought a hot push up underwire bra and low slung bottoms bikini. And I feel like a Goddess in it (and my husband agrees that I look fantastic.)

I mean seriously, life is way to short and precious to second guess, judge, hold a grudge or doubt yourself. If you want something bad enough, just make it happen! But enjoy the ride. I'm enjoying my ride regardless of what my body can or cannot do in any given moment. And I'm grateful for what I have while I have it. 

More Testing

Spring officially begins this Wednesday, but it has been in my neighborhood for a few weeks now. Last week I took a few minutes off at work to roll around our complex and soak in some sunshine. Of course I couldn't resist picking this lovely sweet smelling dandelion for my hair. I forgot it was there and by the end of the day it looked like a dead bug crawling above my ear. Hah!

Friday I had three doctors appointment. One was a pre-op for my thigh muscle biopsy and the other two were for my heart. I was having some scary issues crop up, but since increasing my Q10 dose they had gone away. My PCP made me go through with the testing anyway.

In spite of (or because of) my busy day I found the time to get my nails done. It has been a nice little treat and a good way to spoil my body. Keeping body positive is important when struggling with a chronic illness, at least for me.

I told the echocardiogram tech that I was nervous about the scan since the last time I had any major testing they found a brain tumor. She assured me that she wouldn't find a brain tumor.

Apparently I have a big tough heart. I could have told them that!
In all seriousness, I won't know what this means till they get the results of the 24hr halter test back. And the cherry on top was I was allergic to the adhesive pads they put the EKG monitors on with. Hello raw skin and rash! -sigh- 

But nothing lifts my spirit quicker than a little snuggle time with my 12yo Whipped Terrier mix "Sweetie."

With my increased strength and stamina I've also been out gardening again with my husband. It feels so fantastic to be productive, instead of just watching him do everything.

I also decided to buy myself a cane. It was the one piece of mobility equipment I didn't have. I had been using my Nordic Poles as a walking stick and they're great in the garden or off-roading. But for just help with balance and stamina in say a store or going down the street they didn't have the stability that a cane offers. They're also a bit hard on my hands.

This cane is adjustable with a big, squishy handle. And doesn't it look like a mermaid tail? I'm hoping I can use her at work and short distances, Meg my rollator for medium and Ariel my electric chair for far distances and out all day situations. Time will tell!

A year of struggle

In the beginning of May 2018 I had severe onset of muscle weakness in my arms and legs. I thought at the time it was a side effect from the DMARD I was on for RA. My neurologist believes I have a rare form of Muscular Dystrophy called "Metabolic Myopathy." If you get even more specific he thinks I have "Mitochondrial Myopathy." 

In short it means my energy cells, the mitochondria in my body, suddenly stopped processing energy the way that they should. It also means this can happen to any muscle in my body at any time. It just happens to be affecting my arms and legs right now. And yeah, it's also rare, progressive and there's no cure. I really need to start playing the Lottery.

So far I've had a countless medical appointments, a spinal tap, EMG, MRI, reflex tests, gene sequencing, scraped with a safety pin and in a few weeks we can add a muscle biopsy to this list. I've given enough blood to feed an ARMY of vampires, but it was all worth it just to hear my neurologist say "YES! You have something, and I think I know what might help."

I've been on a high dose of enzymes and amino acids for about 2 1/2 months now. It's literally the only treatment for my condition. I'm learning that the more rare the thing you have is, the less likely there's a current medical treatment for it because there's no profit in it. No profit to be made = no research = no treatment. Fortunately for me the treatment has just started helping. 

Gone are the 4 hour naps during the weekend. I'm actually able to help with dinner when I get home from work and get things done on my days off. My muscles are still much weaker than they were a year ago, but I have far more energy than I have had in years and years.

Today I was able to go out in the garden and work in the yard with my husband. I can't tell you how fantastic it felt to be out in the sunshine moving my body again. I used my trusty Nordic Poles and took lots of breaks. Don't get me wrong, I was very spent physically after and I had to take an Ibuprofen, but I did it!

My husband has been buying me a lot of electrolyte water to see if that helps as well. I noticed my muscle weakness was better for a little while after my brain surgery in September. But I also realized they only let me drink blue Gatorade in the hospital (not water.) I connected that it might have been all the Gatorade that helped my muscles. Heck, I'm willing to try just about anything that can help. But I'm so thrilled we landed on a treatment that I'm responding to and a name for what it is that took so much from me this year.

CoQ10 to the rescue!

It has been quite a while since I've had the time and energy for a blog post. Fatigue is such a horrible part of all chronic illness and it has been a serious struggle to work a full 40hrs a week, even with loving my job so much. There were many days where I questioned my choices and let fear take over my exhausted body telling me I should just work less... or not at all. But just when I felt completely out of hope I finally have something working. All the amino acids and the CoQ10 I've been taking have started to work and I feel more energetic.

(Me and Ariel enjoying some art with friends.)

For the last 2 weeks I've been waking up with much more energy in the morning and feeling far less wrung out at the end of the day. I've been able to even help my husband cook dinner and keep up on some house chores that were a massive struggle for me before. My neurologist increased my dose of CoQ10 because for my condition it can really help. As soon as we did that I really noticed an even bigger change.

My legs felt tingly, but not in a bad way. It honestly felt like all my muscle cells were trying to re-start up some energy for me. It's still very hard for me to walk for very far and standing is especially hard, but it's an improvement and I'm thrilled!

If the number 1 stood for me hardly being able to get out of bed and a 10 is the most energetic I've felt in all my life (we're talking fatigue, not muscle strength) then I'd say I went from a 3 to an 8 in the last two weeks. If a 1 stood for me not being able to move at all and a 10 is the way I used to be then I'd say I've gone from a 3 to a 4 in muscle strength. I'm hoping with some time that could improve. 

(Cheers from work! Keeping a smile on my face and love in my heart no matter what.)

Considering it took two months for me to feel any affect I'm thinking I'll just have to be patient with the dose increase. I'm still using my chair at work and for things like shopping. I can still get around my little house without an aide and with just my modifications in place. I used Meg at a smaller store this weekend and although it was a real challenge I managed it. I feel hopeful and excited for the first time in a very long time.

I am all signed up and approved for my thigh muscle biopsy on March 25th. I have to take a day off work and have it done at the hospital, which is annoying. Hopefully it will give us some more answers.

(Dory at work with her amazing sheep skin cover that was meant for a car.)

Some NON-ILLNESS related things I've been doing (other than work) has been getting my nails done, doing puzzles with my husband, watching Sabrina the Teenage Witch (on Netflix) and Clash of the Collectables (a relaxing antique show.) Of course I'm always spending time with my puppies and oh yeah! Even making time for friends too. 

(I call them my Disney Villain nails.) 

We'll see what this month will bring but I feel happy that we've finally landed on something to help my Metabolic Myopathy.