"Are you going anywhere?"

I feel like I get this question constantly. From family, friends and strangers. "Are you guys going anywhere?" I can't say I've ever asked anyone this. It's like Veganism. If someone is going on a vacation... they'll tell you. They can't wait to tell you actually. They're bursting to tell you. That's why that question is most commonly followed up with "Oh. Well WE'RE GOING TO..."

Iceland, 2014

My husband and I used to love to travel far. The farther the better. We've been to the Canadian Rocky Mountains (twice. Banff and Whistler), Iceland, Ireland and Portugal. My husband has seen much more of the United States than I have, but I've seen more of California than he has. My company even took us to Hawaii back when I was working. 

Hawaii, 2019

These days however travel isn't on my radar. I love our little day trips and going a few hours away (especially to the ocean.) But travel is very hard for me. My vertigo, fatigue and muscle weakness make being in a car incredibly uncomfortable. I think the best I can compare it to is being super hung over and you just ran a marathon, now you're on a car ride as a passenger sitting on a balance ball instead of a seat. It feels like that.

Also interacting with other people is draining for me too. You have a lot of that on vacation. Interacting with strangers. So having a place to go to rest and re-charge is a must. I don't want to spend thousands of dollars and tons of time to travel internationally just to sleep in my hotel. That feels like a huge waste of money to me. 

Half Moon Bay, 2023

And then there's my house. Right now that's where I want to be putting our money. Back when I was healthy my husband and I would switch off. We'd take a vacation one year and do something to upgrade our house the next. Now it's more like going somewhere close and small and a small, continuous improvement on our home all at the same time. I love it.

I feel very grateful to have been all the places we went. I'm sure there are more things to be seen and discovered in the future as well. Just maybe not after a big airplane ride. And I have plenty of people in my life to tell me all about their adventures.

My Body

My illness has a few different names, but they all mean the same thing. Mitochondrial Myopathy, Mitochondrial Dysfunction and Mitochondrial Disease. My neurologist explained the differences just refer to severity with "disease" being the most severe. Here's a tiny bit about what I struggle with. 

What are mitochondrial myopathies?

Mitochondrial diseases are caused by defects in mitochondria, which are energy factories found inside almost all the cells in the body. Mitochondrial diseases that cause prominent muscular problems are called mitochondrial myopathies ("myo" means muscle and "pathos "means disease), while mitochondrial diseases that causes both prominent muscular and neurological problems are called mitochondrial encephalomyopathies (encephalo refers to the brain).

A typical human cell relies on hundreds of mitochondria to meet its energy needs. The symptoms of mitochondrial disease vary, because a person can have a unique mixture of healthy and defective mitochondria, with a unique distribution in the body.  In most cases, mitochondrial disease is a multisystem disorder affecting more than one type of cell, tissue, or organ.

My challenges appear as severe fatigue, brain fog and muscle weakness in my entire body. I also struggle with cramps, spasms and constant severe pain. These are all of the reasons why I can no longer work. Yes... even a little (a question I get a lot.) "Can't you just?" NO!!!

I've had this diagnosis for five years now. In that time my muscles have become progressively weaker.

On top of my mitochondrial disease ravaging my body, I have severe head problems. "Intractable migraine" and "neuralgia" (occipital and temporal). Icepick migraines can come and visit me too. They feel just how they sound. No one flat out said as much, but I expect these are all after effects from my brain surgery in 2018. I certainly never had any of these symptoms before.

So that's my body in a nutshell. All of these issues have combined to turn me into an incredibly mindful person. I fully live in each and every moment (that I'm awake). I also actively look for the beauty and joy that is everywhere to keep me going. These coping mechanisms are incredibly effective. Well, that and a lot of drugs and medical treatments.

The down side of is I struggle to plan into the future. Not intentionally. Not in a depressed way. But like my brain is too Zen and tuned in to what I'm doing in the now. It can make even little things like what to eat or watch on TV impossible for me to decide. It's a strange feeling. Maybe my brain is simply busy coping with the war raging in my body.

Adapting our home

This is a big topic. It's also one that every disabled person I know struggles with. How to make your home work with you rather than against you.

Come to think of it, this isn't just a problem disabled people have. Anyone with a new baby, new partner, new hobby or hell! Just a life change has this issue. Our homes are living things. They need to constantly change to work better for our needs. I know my home now looks nothing like it did when my son was young and in school. Our needs were completely different then.

I've personally always loved changing my house to fit me. My husband on the other hand doesn't just dislike it... he HATES it. Though he does almost always enjoy the results. His reluctance and my chronic impulsiveness have a beautiful way of meeting in the middle to create our unique, well loved home.

Smartly when we had our floors replaced the last time we went with a hardwood without threshold molding between rooms. Just smooth easy rolling. This was before I was even disabled. I just liked the look. I love it when things work out that way.

Unfortunately our home was built in 1957 and you can tell. The bathroom is a closet and the doorways into each room are miniscule. Our home is what my mom calls is "Not disabled friendly at all!" But we're working on that.

During 2021 we had a beautiful stone ramp put in the front of our house. It even has it's own light. We made the front of our house disabled friendly and beautiful. Sadly, it also cost a butt ton of money. As does any remodel. Currently we're doing another one on the cheap.

This time we're changing our dining room and living room. I'm planning for a future when I may no longer be able to walk through our house and might need to use my chair. It also works out that my husband has a bigger office space, given he still works from home almost all the time.

So phase 1 in this new project was to move my husband's tiny office out of the living room and into our old dining room. This would allow him to purchase an electric standing desk and have about double the amount of space he had before.

After that we had some shelving professionally installed. This became the future "disabled kitchen" where I could keep everything I need to help myself. My protein bars, some fruit, a coffee bar, mini fridge with my vitamin drinks, my cups with lids. All that kind of thing. For now it's a bit of a hybrid. But we can easily change what's on the shelves if need be. It also cleared up some counter space in our tiny galley kitchen.

That was Phase 1 and it's pretty much done. Phase 2 will be to re-arrange our livingroom to make it easier to get my chair in and out of the front door. Also I can use my chair in the livingroom if I want with the new arrangement.

All of this has caused a big purge for us. That's not a bad thing. We're making space for the things we love and need and letting go of possessions that no longer serve us. Something my husband finds more difficult than I do, but he's been a champion.

I'm excited to make our home work better for us. And for our family and company! 

Junk in my trunk

I am a woman with a lot of junk in my trunk. Thick thighs, legs for days and a tummy as warm as a pet Shar Pei. But I'm not happy with my weight. My weight has gone up and down with the same 20lbs for about 5 years now. And I have felt like I wanted to lose close to 100lbs honestly for about 20 years now. That's a very long time.

I'm trying to remember when the last time was that I was content with my size. I think I must have been around 10 years old. That's very sad. 

When I was healthy I used to try and focus more on my strength and less on a number. I did Zumba, swam and lifted light weights at our local gym. I also gardened a lot. Like hard core digging mulch piles kind of gardening. Not delicately planting flowers on my hands and knees. I would say I was "moderately" physical. I even tried running a few times.

Now days I do as much as I can when I can, which sadly adds up to very little. That means what I eat needs to count. Also with my disease comes nutrient use issues. My body doesn't process energy well. I've been told to eat little, often with a focus on protein. But do I listen? Not really.

My muscles need a break. My weighing what I do does my struggling body no favors. I know that. But over eating is a very strong addiction. I love food! I love to eat. The more the better. If I have a small plate of food in front of me I feel confused, irritated, deprived, annoyed, anxious... If I have a lot of food in front of me I feel happy, taken care of, comforted, nurtured, spoiled... Food has a lot of emotional connections for me. It's not just "fuel" for my body. 

Portion size isn't my only challenge. Eating frequently is also hard for me.

Looking back at my other food blogs I feel like I had the enthusiasm in spades. The planning was definitely there. So why do I keep failing at this one thing?

Unlike other addictions you can't just stop eating. This makes it harder than most to control. To completely change my relationship with food is obviously a gigantic struggle. Do I minimize my relationship with food and the level of my addiction? I think so. I can make all the positive slogans, lists and plans that I want to. But until I tackle my base level relationship with food I just won't change.

My lunch today.
I'm trying again.

Still Grieving

In the 4 1/2 years I've been writing this blog I've only done one post on grief. And even that one I managed to twist into a hair post. Hah! That sounds just like me. Grief is hard. It's hard to talk about, write about and to go through.

Sometimes I'll be talking about a new symptom or pain I'm going through and I'll just start crying. I'm often surprised by my emotions around my illness. They like to sneak up on me. For me my grief is often masked by my upbeat positivity. But this is a very thin crust. Poke it just a little and I crumble.

My life is nothing like what I thought it would be. I have had my MFT license for three years now and haven't been able to use it. I worked 10 years to get that license and have my "dream job" of being a psychotherapist. Only to watch that future slip through my fingers.

I thought I would be contributing financially so the burden wouldn't all be on my partner. So he could retire early and not have to stress about money so much. Instead I'm worried he has an ulcer from his stressful job. It sucks. Bad.

I thought I'd be able to walk and run for much much longer. I thought I'd have a pain-free life. Or... you know. At least a normal amount of pain. I never could have imagined I'd have migraines, plates and screws in my skull, the level of forgetfulness that I struggle with, not be able to take a bath because I can't get in and out of the tub... (This could be a very long list.)

Yes, it could be worse.
Yes, many people are in similar situations.

But it's still ok for me to grieve my massive loss. And for those close to me to grieve too. It's bullshit that I can't work. That my body does nothing but fail me.
I'm angry.
And sad.

And I'm entitled to feel that way and to let it all out every now and then. 

What I take and why

I haven't talked about my medications in a few years. In fact I've only really talked about ALL of them twice.

March 2020 post

January 2020 post

Six years into this chronically ill life and here's what I'm taking and why.

 
TD means that I take it 3 times a day

Prescriptions

1. (LevoTHYROxine) Synthroid 125mcg AM (for hypothyroidism)

2. (Pregabalin) Lyrica 150mg TD (for neuropathy)

3. (Duloxetine) Cymbalta 20mg afternoon, 60 mg PM (for muscle pain)

4. (Lioresal) Baclofen 20 mg TD (for muscle spasms)

5. Botox for migraine, every 3 months

6. (Symmetrel) Amantadine 100mg AM & 2hrs later (for fatigue & muscle problems)

7. Aimovig auto injector 70mg, monthly (for migraine)

Supplements (Mito Cocktail) helps give me more energy & helps with muscle cramps & spasms

• COQ10 300mg TD (900mg total)

• L-Arginine 500mg AM

• Vit. D3 2,000IU AM

• Potassium Citrate 99mg TD

• Magnesium Citrate 420mg TD

• Fish Oil 1,000 mg Noon

• L-Lysine 1,000mg BD (for mouth sores)

• B Complex Noon (B1 1.2mg, B2 1.3mg, B3 16mg, B6 1.7mg, B5 5mg, Folate 680mcg, 1B12 1,500mcg, D-Biotin 400mcg)

PRN taken as needed 

• (Amerge) Naratriptan 2.5mg (take at onset of migraine - migraine cocktail)

• (Compazine) Prochlorperazine 10mg (take with Naratriptan - migraine cocktail)

• Acetaminophen 500mg x2 (for pain and w/ migraine cocktail)

• Albuterol Inhaler (asthma)

• Wixela inhaler (medium asthma)

• Albuterol Nebulizer (DME) (bad asthma)

• Baclofen 20 mg (if muscle spasms increase)

• Diclofenac 1% gel (muscle pain & nerve pain)

I've been taking most of these for so long now that it's hard to remember a time that I didn't. I did the math and by the time I'm 70. So from today to when I'm 70 years old I would have spent just over 300 hours filling my pillbox. Woah. That's a lot of my life. 12 1/2 days. Almost 2 whole weeks. Just filling my pillbox.

This is what I take just in the morning alone. I'm lucky that I don't have more problems swallowing pills. I'm also lucky that everything I take is helpful. I have it pretty dialed in at this point as far as dosing goes and where to find the best deals on my supplements. 

I think of my medication like my glasses. I can't function without them and my world is so much better with them. I'm grateful for my excellent medical team who helped me come up with the right things to take. 

Trying Something New

I will never stop trying new things and tweaking my existing treatments to try and be as pain free as possible. Yesterday I tried something brand new. "Dry Needling." 

The whole procedure was fast. It took about an hour from start to me leaving. I had "ultrasound guided dry needling" done to some problem areas in my back that are tight and painful. As I understand it the point is to dig the needle deep enough into the muscle a few times in order to start an immune response from the body. The body then sends healing resources to those muscles and they heal looser and improved than before.

Here's how my day went.

I woke up at 6AM to be ready for my 8AM appointment.
I wanted to be early enough to put on a little makeup and not be in a rush.

I gathered my paperwork that was sent to me ahead of time.

The nice lady who checked me in said it was the first time ever someone brough ALL their paperwork already completed with them. I believe it. I am THAT patient.

We waited in the lobby till 8:15. 

I miss crappy lobby magazines.

I was checked in and prepped for the procedure.

I brought my air pods and audio book in case I needed it.

Oh yeah! And my "fidget cube."

You can see it in my hand.
I'm throwing a chaka and ready to go!

Between stretching and showering I slept with my own personal guard on duty.

I woke up at 6PM to see this little bed bug peeking at me.

I was able to stay seated in my chair and just lean over a bedside table that was wheeled in front of me. I appreciated that. My blood pressure and heart rate were monitored the whole time. An ultrasound machine was used to make sure the needling was happening at the best muscle depth. Not to shallow and not too deep.

Some of my muscles spasmed during the process. I was told that was "good." Ok. When they did some spots on my neck and shoulders it didn't hurt at all really. As I anticipated it hurt when they did a bad spot on my lower right side of my back. I can compare it to when you're at the dentist with a sore spot and the hygienist pokes it just right to send you through the roof. It felt like that.

They used topical lidocaine on me and that's all. Again, like the dentist. They said if I was "unable to tolerate it" then they could have "injected something." I tolerated it. Honestly it wasn't any worse than my Botox for Migraines. It just had a longer after-pain that left me exhausted. Although I did get apple juice at the end. I don't get juice after Botox.

I'm supposed to go back in 6 weeks for another treatment. I will say my neck and shoulders, although still tender, do feel better. My lower back "spot" feels pissed at me and just as bad if not worse. I'll go back for another treatment and hope that it is helpful.