Hello there! I’m Holly – I’m an awesome Aunt, a Cosplayer, a Physical Therapist Assistant, and I have HyperKalemic Periodic Paralysis. I was clinically diagnosed (and have a VUS on SCN4A) in October of 2021.
I began having chronic symptoms in 2014 though after learning more about PP I later realized I’d been having symptoms since I was 11. Through research, I figured out what I had on my own, as the first neurologist I saw was useless. After significantly decreasing my dietary potassium, my episodes of paralysis and weakness decreased by ~85% in both frequency and severity. For several years, I was still able to exercise vigorously 2 ½ hours a day, work 2 jobs as a PTA, participate in my weekly lightsaber class, attend charity events in cosplay multiple times a month, teach at church, and hang out with friends.
In 2018 my fatigue began worsening to the point that in 2019 I quit my job to move out of state to stay with family. I was still functioning fairly well until I got a severe respiratory virus, after which my fatigue became debilitating, and I began struggling with severe dyspnea on exertion. Unfortunately, with these new issues, my condition worsened, and I developed exercise intolerance on top of everything else. I went the rounds with the doctors again and 10 specialists later, finally got an official diagnosis of what I already knew I had. I have worked hard over the past 2 years to reclaim a moderate amount of function and am now able to do light strengthening exercises every other day (still no cardio) and work at a PT clinic 5 hours a day, 3 hours a day. I hope I may make more progress in the coming years, but if not, I know I will still be ok. Throughout this journey, I have lost a lot of things I never thought I would have to do without, gained unexpected blessings and learned much about myself.
Some of my more painful LOSSES have included:
The ability to exercise vigorously and the joy I found in that
The ability to work enough to support myself financially
The ability to just get up and do things I want to do
Feeling well – ever!
The ability to make and follow through with plans with friends
All my dreams, plans, and hobbies
But there have been so many BLESSINGS, like:
An increased empathy for others living with chronic illness (the relief of my patients with chronic illness
knowing that their therapist “gets it” is a blessing in itself!)
A new career path with wellness coaching
More time with family
New friends
More patience, more humility, more faith
Most of all, this condition has been a vehicle for deep LEARNING, such as:
*”…a Jedi adapts. Resentment and denial are not forms of adaptation.” – ruth baulding. I still have occasional bad days of feeling sorry for myself, but after letting myself have a good cry or get mad for a little while, I know I need to let it go and focus on what I can do.
*“Your focus determines your reality.” “Keep your concentration here and now, where it belongs.” – Qui Gon Jinn. I’ve learned that dwelling on the past or the future is the pathway to depression and fear. When I use gratitude to focus on the good things in the present moment, I have peace.
*“This is the day which the Lord hath made; we will rejoice and be glad in it.” – Psalm 118:24. These are the circumstances God has given me to live in today. I don’t need to understand why or expect that they will be different in the future in order to be happy and at peace. If I waste today fretting over those things, I will miss the beauty and grace that are available to me today.
*The changes in my circumstances and abilities have been a tool for changing me – changing where my focus is, what I value and spend time and energy on, where my identity is centered. I realized I had allowed my
identity and purpose to become enmeshed with outward things – my work, my hobbies, etc. Now I seek to release attachment and dependence on the surface aspects of my life and find my value in the eternal.
If given the choice, I’m not sure I would never choose to have periodic paralysis, but I am thankful for the unique experiences I’ve had and the learning and growth that have and can continue to come through it.
Holly in United States