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.
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