For over 14 years I haven’t felt like a normal teenager or 20-something. I was diagnosed with Lyme Disease back then but the symptoms never really went away. Since I was 13, symptoms have come and gone (although never completely gone) with some phases being worse than others. It’s mainly affected my joints with inflammation. Chronic fatigue, hyper sensitivity, and brain fog are also commonly contributing to my life. I’ve become accustomed to a certain threshold of constant pain and discomfort. My body has learned to compensate and adapt just to complete the most basic tasks. I have no idea what it means to feel normal or energetic anymore. Some joints don’t bend, some don’t straighten, some creak, crack, and pop. You name the spot, it probably is currently or has been a problem for me. If I don’t take a pain reliever when I go to bed at night, I won’t be able to get up in the morning and yet it is still difficult to sleep through the night. This has been the case for more years than I care to remember.
Have you ever found it difficult to perform any of these tasks?
Drive a car | open a door | fold laundry | get dressed | brush teeth | turn a key | hold a cup of water | high five | arrange a blanket | type an email | cut food | wave hello | pump gas | walk | turn a book page | stand up
For me, these actions are difficult every day and the list goes on for a very long time. Washing dishes, opening a bottle or jar – sometimes even if it’s already been opened – and sitting on the floor are completely out of the question. This list also includes dancing. If anyone knows me even a little bit, they know this is a much-loved activity of mine! I learned to swing dance in 2009, and it has since been my get away and stress relief activity. However, I haven’t traveled to any out-of-town events for over a year, and right now dancing with one-arm while mentally disconnected for a song or two just isn’t the same.
(￼￼￼Photo Credit: David Mudre Photography)
Over the years I have spent thousands of dollars a year on various appointments, supplements, treatments, and diagnostic procedures. I’ve completed allergy testing, drastically changed my diet, started an uninsured allergy treatment, and lost weight I didn’t need to lose. I’m an extrovert, but I’ve stopped participating in many activities or initiated seeing people. There’s a lot of effort that goes into that which is very depleting for me now (not the people part), like driving, not having food available I can eat (I truly appreciate everyone who goes out of their way to accommodate this!), or I simply can’t physically participate in the activity. Instead of firmly committing to plans, I remain tentative just in case I’m too drained and hurting which might make me back out at the last minute (and I despise being flaky).
Several joints are now severely degenerated with missing cartiledge and arthritic causing deformation, immobility (including a frozen shoulder), and muscle weakness. On my current medical adventure, I am preparing for stem cell and other regenerative therapies to be performed on 3 joints over the course of several months starting in February. These therapies are considered experimental and not covered by insurance. They’re extremely expensive for one joint, let alone multiple joints. Did I mention there isn’t a payment plan? I’m estimating these costs alone to be at least $30,000. I might need to do it again in 1 year, 5 years, never, or maybe just all over again to different joints. What is my alternative option? Replace half my joints with artificial ones (no, thank you) but the remaining half of them probably wouldn’t be able to handle the physical therapy to recover anyway.
I’m currently receiving IVs and joint injections weekly in New Jersey to clear out any infections or remaining Lyme that may be destructing my joints and prep the joints that will be receiving the stem cells. This part isn’t as radically expensive per treatment, but is still a significant small fortune in addition to the weary 2+ hour drive and affects my work schedule. These costs average over $1000/week, not including supplements and prescriptions. Going down this path is the most promising option I have right now since I have exhausted all other viable options. I have to try for the sake of my future and people in my life.
This experience has been exhausting not only physically, but mentally, emotionally, spiritually, and - the reason you’re reading this - financially. If you can help in ANY way, I would be so grateful for your generosity (I also accept additional support in the form of hugs, prayers, visits, and gluten free/peanut free/vegan cookies)!
Of course, please share this in any way you are able or feel inclined to do so.
P.S. Go skydiving before you can't.
July 2018 Edit:
Since I get questions on how I am doing, here's an update on my health and 80-year-old joints. I'm still receiving IV treatments and traveling to NJ every month for joint injections where I pay someone to torture me with needles. Since the stem cell treatments in February, the ongoing monthly medical costs are hovering around $2500 and I do not have any answer as to how long the injections will need to continue. At this rate, I will surpass the estimated $40,000 in expenses I listed in the GoFundMe goal by the end of the year but hope the frequency of treatments will begin to taper off before that.
I've continued seeing/feeling small improvements in the elbows and shoulder that are specifically being treated. It's a slow go and very subtle. These types of treatments take a long time to make noticeable progress since the body is trying to rebuild itself. I have good days and bad days, but there are fewer bad days (or are at least not as bad).
My GoFundMe remains open for financial support and to share. Thank you all for your continued support and love!!
- Zachary Williams
- Bakari Hassan
- Laura Crone Green
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