52 and THRIVING!

These days I'm not just "surviving," I'm THRIVING!

I spent the last many years surviving. Going from one physical crisis to the next. I'm thrilled to report that I've been "crisis free" for about five weeks now. I'm also getting stronger every day. Here's what I'm doing that's working for me.

• I work out in some way daily. Dog walks, my trampoline (affectionately dubbed "Fatty Bounce Bounce" by my husband), my new gym, swimming with my mom, long walks every Saturday with my husband.
  
  
• Wearing my FitBit every day to track my sleep, heart rate, HRV and overall progress.
  
  
• Using Hungry Root for dinners during the week. We get about three meals a week with ingredients and the menu delivered right to our door every Monday morning.
  
  
• Eating strictly vegetarian and limiting my animal protein. A little cheese, yogurt and eggs.
  
  
• Watching my weight. So far I just watch it go up a little and down a little, but it's a work in progress.
  
  
• Resting when I feel tired.

That natural glow is from sunshine and exercise.

Since adopting these practices I'm feeling much more myself. My migraines remain an issue. A side effect from my craniotomy, I'm sure. But my mitochondrial disease feels to be in full remission right now.

With that comes a huge adjustment and also some fear. Fear that it could turn back on me just as suddenly as it went away. I'm on my guard, but also just loving life.

My husband and I walked just under three miles with our little dogs yesterday. I was exhausted, but felt so proud. It was the farthest I'd walked since I can remember. Just a month ago I struggled to walk a mile. I also carried one of our dogs or the other for at least half a mile. That's an extra 12lbs.

I told my husband I'd never poo poo another 12lb weight loss again.

This little guy is solid!

I still have severe dizziness, and "ice pick" migraines daily. I have been taking Qulipta 60 mg every night and it was working very well. Then it felt like I acclimated to it and it stopped being so effective. That seems to happen with me and medications.

My migraine neurologist is going to try me out on Lamictal 25mg instead to see if that helps. I feel like I might have tried it before, but I don't remember. It's an anti-seizure medication that should help with my type of migraines. 

In the meantime, I will try to keep up the good work and continue to re-build my body from being so ill for so long.

What is a "disability" anyway?

I consider myself to still be disabled. Many people would see me at the gym, or scrubbing down my kitchen counters and disagree. So why do I claim the word "disabled." What does that term mean to me?

To me any disability is something that gets in the way of your baseline functioning. That baseline is different for each person in the world. Only you know what it is. 

People with insomnia are disabled. If your depression makes you late for work, you have a disability. It's not just someone using a piece of durable medical equipment. A wheelchair, cane or walker. It's not someone with a missing limb or using sign language to communicate. And most of the time it's something you can't see. Like Autism or Mitochondrial Disease.

Yup. Still disabled.

I am disabled. I suffer from horrible chronic pain even now. A few times a week it makes sleep challenging for me. I take a slew of medications to try and keep at a level of pain that I can tolerate. I struggle with nerve damage on the side of my face where I had my brain surgery. It hurts when it is even touched. Often it hurts when it's not being touched. The Botox I take for my migraines helps it incredibly. Botox is a huge tool to keep the pain, dizziness, auras, pressure and other issues from my craniotomy at bay. But even so I have "breakthrough symptoms." Especially if the weather changes or I travel to even a slightly different elevation.

My migraine symptoms often make my head very fuzzy. My constant body pain doesn't help either. This impacts my memory. I often forget what I was saying, especially if someone interrupts me. Remembering names is a nightmare. I wish the world wore name tags.

You can't see any of these things. I don't go around screaming or crying when I'm in pain. The metal plates on my skull are on the inside (thank goodness.) I smile and get on with my life. If it gets too bad, I'll go to bed and try to sleep till the extra medication kicks in. I'm working hard to feed my body right, get rest and build muscle. That is a full time job for me right now and I'm unapologetic about it.

So yes I can walk, laugh, use gym equipment and stay awake through the day (most of the time). I am still a disabled woman and likely will be my entire life. My symptoms are just managed (most of the time) with a lot of hard work and great medical care.