A Snapshot in Time

 April 4th, 2018 I started this blog. I knew something was wrong with me, but I had no idea what. In 2015 I tested positive for Tuberculosis. I was on the drug Plaquenil for 9 months. It was awful. I had a whole slew of side effects and took a year off of grad school mid-way through a two year program. I was a wreck. 

At the time it was the worst thing that happened to me physically. HAH! I just have to laugh looking back. It's like stubbing your toe and thinking that's the worst thing ever only later to have all your limbs cut off with a chainsaw.

I won't rehash my complete timeline, because I did a good job doing it here with pictures. But writing a book about my journey has been on my mind. Given that I was thinking pictures are more powerful than words sometimes. My opening could be this montage of my journey...

Success is the word for this year.

I graduated with my Masters in Counseling Psychology. But by the end of the year I'm experiencing some pretty major fatigue. I intuitively know something is wrong.

Fighter is my word for 2018. 

I got my Mitochondrial Myopathy diagnosis, along with brain surgery. I felt like I was just fighting everything coming at me this entire year. My mobility was a big struggle this year. It was all terrifying. I worked full time this whole year.

Surviving is the word that comes to mind for 2019. 

You know how they say "thrive, don't just survive." Well, I was surviving as best as I knew how. I left my dream job, no longer able to keep up mentally. I'm diagnosed with chronic migraines and setting into using a wheelchair any time I'm out.

Joy.

I know that sounds so strange given what happened to the world in 2020. But for me it was validating seeing everyone's lives change so dramatically like mine had. It also brought us much closer as a family. Our son was living with us and we made a lot of moments of happiness this year. 

Content.

In 2021 I felt like I was really settling into my new life. I built up my core medical team and started finally feeling my symptoms being more managed. I felt much less scared than I had in the past. 

Weary.

Although I have many blessings in my life, I remember just being completely wiped out this year. I would try to have company or go to someone's house only to have it leaving me totally drained. I'm so fatigued that I can't make even the most basic decisions.

Miraculous.

This year I learn about my processing issues of long-chain fatty acids. I drastically change my diet and am mobile again. I still have a lot of fatigue and some atrophy, but I'm able to do so many things I thought I never would again. Everything is exciting and new again.

Thriving.

I'm working on my fitness and physical health. I still struggle with my chronic migraines and fatigue, but I'm able to do so much more day by day.

Insanity. (In a good way.)

I change my diet even more. I'm focused on short-chain fatty acids, gluten free and vegetarian. I feel even better. I can go some days with no nap now and when I do nap it's for much shorter a period of time. My strength and stamina is finally up to pre-illness levels.

I'm so excited to see what the rest of this year and next year hold. I'm working on my food addiction, so hopefully I'll make some progress there soon.

"I've Got a Golden Tiiiiicket!"

Five years and four months.
314 Blog posts.
And...
IT HAS A NAME!

I have... (drum roll please)

LCHAD (deficiency)
Long-chain L-3 hydroxyacyl-CoA dehydrogenase

Say that ten times fast.

I'm so excited because once you know exactly what a thing is. What's wrong with me. Then it can be treated. I'm incredibly fortunate because I can treat my genetic mutation with just diet. As long as I avoid long-chain fatty acid foods, I have energy! This is incredible. I feel like Charlie Bucket who just found a golden ticket in that bar of chocolate. Except I can't eat most chocolate.

I need to avoid as much fat in my diet as possible. Except for (strangely enough) grass fed butter and all sheep and goat cheese. Those are all short-chain. Well technically the FOOD isn't a short-chain fatty acid itself, but that's what it produces in your gut. It's all very science-y and complex. Point is I can eat it. 

Celebratory mani-pedi day with my Mama

As you can imagine all my friends and family are over the moon for me. I just walked a mile and a half this morning at our local nature center with my husband. And WOW! Losing weight sure is easier when you can actually MOVE. (Who knew?)

I told my husband that I'm gobsmacked how much brain space it takes to just move around and exist in the world as a disabled person. "Can I fit through here, am I going to knock this over, will this make me too tired, will I get stuck?" I know this covers many disabilities and size differences. To have to give up sacred brain space to such basic ways of existing is awful. Or as my grandfather likes to say. "It's disgusting."

Just being able to go for a walk and not think about those things with my body is liberating. 

That's the word for it. I feel LIBERATED!
Liberate: To set free from restraint or bondage.
Yes. That's the word.

I've been eating this diet for over a month now. I'm completely off my muscle relaxer Baclofen, I was taking it three times a day. I'm eager to see how many of my medications I will no longer need, but I'm trying to take things slow. Not my nature, but I'm trying.

I'm also looking at joining a gym. There's been an issue with my mom's pool at her community and we're on the hunt for a new one. All of my new energy has to be put to good use somewhere. Meanwhile, Max is reaping all the benefits.

September 2023

September 2022

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.