What I Would Tell Myself

I've been on this journey for a while.

Being disabled.

Being chronically ill.

How far back do I go?

Where to begin "counting."

2 Years since migraine treatment began.

4 Years since brain surgery (2018).

4 Years since my first wheelchair.

5 Years since my first myopathy symptom (2017).

7 years since Tuberculosis (2015).

I think seven years is the start. 

It was that diagnosis and the treatment that followed. Nine months of intense antibiotics to try and rid me of TB symptoms. That was the catalyst. If I could send a letter to myself seven years ago. When the vertigo started and I couldn't drive. When my legs gave out on me and I crashed into a bookcase. When I cried hysterically in the hospital parking lot, terrified of what was happening to my body. What help would I offer myself?

I would tell myself...

"You're going to be ok. You're doing everything right. You will find fantastic doctors who will help you make sense of all of this. Go slow. Rest as much as you can. You will discover a 'new normal' with each stage you go through. You are incredibly resilient and so are those around you. Reach out for help when you need it. You're doing great by using mobility tools. None of this could have been predicted. You'll be surprised by how strong you are. Many people will help you through this."

What a journey it has been.
And I know there's more to come.
The only thing constant is change. -Heraclitus

2015

Where it all began

TB diagnosis

2015
Working out as much as I can

2015

9 Months of TB drugs

2015
TB treatment is at an end

2016 

Back for my last year of grad school

2017

Back to work

2017

Fatigue is starting to kick in

2017

Neuropathy starts

2017

Graduation from Masters Program

2017

Muscles feel weak and "funny" on vacation

2018
Wrongly diagnosed with Rheumatoid Arthritis

Feeling weak and tired

Working full time

2018
Ask for disabled parking due to weakness
I start using a walking stick

2018
I start using electric shopping carts

2018

I start using a rollator

because I need to sit periodically when out

2018

I keep feeling worse

I'm missing work

It's all very scary

Finally diagnosed with Mitochondrial Myopathy

2018
We buy our first wheelchair

a small transport chair

2018
I'm diagnosed with a brain tumor

2018
Going under for a craniotomy

2018

YAY! I didn't die and the tumor was benign

2018

My first big wheelchair

2018

We buy a travel electric wheelchair

2018

My first outing in an electric wheelchair

2019

Business trip to Hawaii

I'm still working full time

2019

Leg biopsy for myopathy

2019

I go down to part time work

2019

I stop working

I also start needing mandatory rest periods during the day

2019

My mom changes her plans and moves around the corner

2019

I'm finding my way

2020

We buy our wheelchair van

More testing happens, mostly to find my baseline

2020

Covid hits just as my medical team is coming together

2020

Swimming saves the day

2020

I developed migraines from my brain surgery

Botox is a lifesaver

2020

All the major fires are horrible for air quality

2020

I have my medications and supplements pretty dialed in

2020

My team checks on me frequently

2021

I have lots of love and family support

2021

My muscles continue their decline

I'm fit for a neck brace for extra support

2022

I start Amantadine and it helps a lot

2022

I go through Physical Therapy

for my neck pain and stiffness

2022

I go off Amantadine, relapse and find a new hobby

Pottery

2022

The pool is still a helpful escape

2022

I decide to keep my hair super short

due to decreasing arm strength

2022

I get assessed for a new wheelchair

PINK this time

2022

My migraines are stable with Botox

and Amivog injections

2022 - Today

I rest between 2-3 hours a day

Typically from 2-5pm

I spend a lot of time with Max

I'm with my Mom about 3 days a week. She makes me lunch.

My man has stepped in and stepped up. He does a ton around the house.

I no longer drive or can work for money.

I use my chair anytime I'm outside our home.

We're currently modifying our house to make it more wheelchair friendly.

Never NOT Scary

I missed an opportunity.

I really should have done this post in October for Halloween.

Ah well. For some the winter holidays are even more frightening.

Like "What mobility aid will I need for which house?" "Will they have gluten free food for me?" "What time will it start?" Or "Will I be able to go at all!?" OOoooooOOOoo. Scary.

But what I find the most scary is when my abilities change. Sometimes it's a slow change. The slow boil that's hard to notice. Like not being able to change light bulbs anymore (especially above my head.) More often then not however it's something I used to be able to do one day and then I can't do it the next. Like...

• Walking around the block
• Painting my nails
• Baking
• Staying awake all day
• Driving

You get the idea.

And what I'm learning as I progress down this road is that when it happens it is never not scary. It's never not painful. It's never not alarming. It just doesn't get easier. Then the once unthinkable becomes the norm. Just like COVID did for so many millions of people. 

I don't know how many more of these landmarks are ahead of me. All I can do is savor each moment and enjoy what I CAN do while I can still do it. 

Hair One Day, Gone the Next

I have always been a chameleon with my hair. Ever since I first bought my bottle of Sun In and bleached it to a bright orange as a young tween. I treated my hair like another accessory. Like Jewelry. I had fun mixing it up. Short, not so short. Red, black, natural. Bob, pixie... 

But don't take my word for it. Here's some head shots from the last four years.

Box dye brown

No dye bed head

Shaved off post brain surgery head
(I did it myself)

Sweet henna head

Wonder Woman black, longer (for me) hair

Irish red hair

Up, down, head scarf, hair clips. I loved to play around with my hair. 

I haven't colored my hair in over a year now. I miss it sometimes. Just the fun of changing things up if I want. But I don't miss the mess, cost or smell. I also don't think I could do it now.

The way my muscle disease works for me, reaching over my head while sitting or standing is the hardest thing I can do. So shampooing, blow drying, all of those motions cause me a lot of pain. My arms fatigue very fast.

I wanted to grow my hair out again, but the styling involved with long hair has just become impossible for me. I can shampoo and do a quick blow dry, but that's it. Forget all the products and cute styling. Flat irons, curling irons, hair clips, bobby pins. It's all out for me. 

Instead of all those distractions I'm trying to embrace what's important in life. To stay focused on the things that really matter. My hair does not matter. As my husband says, "You're beautiful and sexy no matter what!" Having it short and natural saves me loads of energy, which is the most important thing.

My New Hobby

 For the last four months my husband and I have been enjoying a new hobby. Pottery. At first I thought we could both learn how to turn clay on a pottery wheel. But after the second time trying I learned it just takes way too many muscles. So my husband has been on the wheel improving each and every time. Meanwhile, I have been working at the table doing "slab build." That pretty much means just working with my hands without any clay moving. 

It has been tremendous fun! Shockingly so. Even more fun is the fact that I'm not very good at it. I'm learning each and every time. I'm a very creative person and I'm used to being pretty good at every art that I try. But clay? That's a new one for me. My muscle weakness also makes it harder for me, but not so hard that I can't do it (unlike the wheel). 

It's incredibly rewarding to actually make things that are usable in a different way than just hanging on a wall. We're making all our Christmas gifts this year, 

A finished product takes two pottery sessions. I make it at the first one, then they fire it while we're away. At the second session I glaze it. They have about eight different colors to pick from. 

Next up? A new dish set and plant pots. 

Powering Down

 So this is a thing...

It's called Livedo Reticularis. My doctors think I developed it from my Amantadine (aka: God's Cure Pill). It came on in May after my horrid sinus infection. I think they're wrong and it's from that virus. But they wanted me to stop taking Amantadine till I can be evaluated by a Dermatologist. Insert two month wait here.

Unfortunately without my Amantadine, this happened...

No, I didn't turn into a turtle. Not even a Ninja one.

Everything became slooooooow. I'm more tired in the morning (though I am sleeping deeper). The worse of it is my muscles became about 50% weaker. It has had a huge impact on my quality of life.

It has been about 11 days now with no improvement in my legs. They get much worse if I stand or walk. Last night I messaged my doctor to see if there's anything we can do while we wait to see what the dermatologist has to say. Blood labs? Antibiotics? I'm feeling desperate.

Because I'm moving less I also hurt more. It's a mess how that works. It's also been too hot to swim this week, which STINKS! Swimming helps me feel much better.

In the meantime I'm eating more to self-sooth, which isn't really helping my body either. ACK!

This little guy always helps!

I just have to ration my spoons even more than I was before. I have about 3 spoons per day or so when I used to have 6-10. And bathing always takes at least 1. Bummer.

I'm hoping for a situation update soon!

Let's Play It By Ear

 "Let's play it by ear" is the warrior cry of the chronically ill. It is an enormous challenge to plan life in advance as I never know how I'm going to be feeling from one moment to the next. With this comes a lot of guilt.

I feel guilty for making my husband miss out on having people over as much as maybe he'd like. Guilty about not going to friends homes as often as I'd like. Guilty for turning down fun invitations to places because I'm too exhausted to go, or the time of day is wrong (it's during "rest time") or the location isn't accessible. 

I feel guilty not being able to spend a full day away from home and making everyone have to come back home early so I can rest. I feel guilty spending a whole day sleeping after doing something exhausting. Guilty for not helping my mom and son out as much as I'd like to. Guilt also comes when I can't do something myself and I need help. 

Behind all of this "guilt" is a great, big, SHOULD.

I SHOULD be able to make it all day long without a rest.
I SHOULD be able to go to someone's house to visit for hours.
I SHOULD be able to travel.
I SHOULD be able to make plans and stick to them.
I SHOULD be able to get up and get on with my day in a productive way.
I SHOULD be able to help others.

But none of these SHOULD's should be here at all. Because of "can't." I am a disabled person unable to do these things. That is the reality of the situation. I can want to. Even feel like I "should." But I can't. So I don't. 

So instead we "play it by ear." Adjust when we need to. Do what I can and skip what I can't. Adjust our plans (or cancel them) and work around my needs. That's the fact of life right now. No need to guilt myself about it or "should all over myself." None of these feelings are helpful or healthy.

It is helpful to remind myself of that when the guilt starts to creep up.

Unlocking the World

On August 17th, 2018 I had my first ever assessment for a wheelchair. That chair would turn out to be my Quantum Edge in Ocean Blue (of course). I love her very much.

How can you love a wheelchair?

Much the same way people love their cars.

For me she's so much more than a chair that moves. She's everything about freedom that's so important. She literally unlocks the world for me. Without her my life would be smaller than small. 

She also means independence.

I'd be relying on others to push me everywhere if I didn't have her. Not only is that tedious for them, but it feels awful for me (literally, I get motion sick this way.) As my mother once put it when she had to push me before we purchased our wheelchair van. "Awwww, it feels the same as when you were little and I would push you in your stroller." For me too mom! It feels the same for me too. Like I'm an infant. Ick!

My biggest fear is that she will break and I'll have to wait months and months (if not a full year) to get a new one. Repairs and delivery of medical devices is shocking. A few companies have a monopoly so they can take their sweet time, lose your order or screw it up as much as they like. You're at their mercy. It's such a racket.

I have many fantasy businesses, but one of them is running my own wheelchair supply and repair business. 

Anyway... I digress. 

If something happens to my chair (and it already has in the past) I'm very limited. I do have my travel chair as a backup, but she's not nearly as comfortable or maneuverable. She's good for an emergency, or rugged travel. Not really for every day use.

I'm also curious if I could get a new wheelchair that raises and lowers up and down. Not just tilts front and back. And, as much as I love this chair, I didn't get the full assessment of an occupational therapist (OT) when I was fitted for her. Just a sales man for the company who ordered her for me.

I contacted my insurance company to see when I could qualify for a new chair and was told "Anytime you need one." WOW! That's great news. So then I reached out to my muscular neurologist and asked how it would work. She said she would need to see me, but that we could do a video visit. Then she would send me to my fabulous muscular disease OT for an assessment. Bingo!

This all means I'm hoping to get an order in for a new chair soon. That will give me some new options and a solid backup should anything happen. And IF I ever travel again on a plane, I can bring my big chair and not be in a panic if something should happen to it during the flight.

My world just keeps getting bigger.