Join Mary's Journey to Recovery
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Hello my name is Mary.
This is without a doubt the hardest thing I’ve ever done.
Asking for help to save my life so I can return to living and paying life forward.
Having tried my best to always live a life filled with giving and helping others, asking for help especially monetarily doesn't come easy for me, nor do I take it lightly.
Humbling is the first word that comes to mind. Humility the second. And, embarrassing the third word, but I’m at a complete loss.
I recognize this is perhaps not the best time to ask for financial support with so many people across the globe having struggles themselves.
Still I need help, as I can no longer reach the summit on my own.
I've been battling both a very serious spinal condition, and a complex systemic illness. Both of which are now effecting every bodily system including neurologically and I now find myself in dire need of support and the resources to continue care.
I’m not great about talking about me. But, I’ve agreed to help by writing this myself and setting it up since my situation become so complex for a loved one to do so.
This is my story.
As a single Mom I raised two wonderful sons while working full time and going to school part time. We enjoyed a healthy balanced and active life giving back along the way.
I was also what one would call a weekend warrior. Having spent most of my life as a runner, I spent windows of time on weekends doing runs for charity and then soon marathons, and eventually Triathlons.
Then in 2001 at age of 42, I had a freak fall resulting in a broken neck and back.
Yet, with determination and grit, I overcame that challenge even in the face of many obstacles and losses.
I was also even able to finish two college degrees mostly on- line while I rehabbed and healed.
Sharing only for the purpose of a little insight to the type of individual I am; work hard and keep going with the sunny side up.
It was a long recovery one I'm told was met with enthusiasm and only looking forward. Nothing was going to get me down. Nothing was going to stop me.
The idea of returning to work and the love of my sons, family and friends kept me motivated to prevail.
And that I did, recovering so well no one would have known any different.
Then as we have all experienced life can show up with other ideas just about the time we’re making other plans.
In early 2009, eight years after pulling through that horrific injury, I was diagnosed with Pituitary and adrenal insufficiency.
However, I never felt like I fit that diagnosis. I felt well. I noticed a little loss of muscle mass but I felt good, looked healthy and had lots of energy.
My take was any muscle loss was due to a post-surgical infection. I had been on steroids and antibiotics so I was sure it had messed with my body and I just required more recovery time.
Still they started replacement hormones, for the Pituitary, our master gland to all others. But, around nine months the hormone treatment now seemed to be making feel unwell.
I wasn’t myself at all. We stopped the treatment.
Labs a bit suspicious of cancer. However again, before that Pituitary treatment I had felt fine. I could out walk anyone.
I did my best to stay active walking daily as I did not want to lose everything I’d regained from the accident in 2001.
Nothing made sense. Least of all being sick. I felt like everyone needed to step back and rethink things.
For nearly three years 2009 – 2012, we stopped the Pituitary and adrenal support but kept me on thyroid and estrogen.
I seemed to hold my own while Western medicine looked for a possible underlying other problem.
But suddenly I started having these crashes all the time and loss of electrolytes. Which I really still felt related to something in my gut. But not all agreed.
The blood doctor thought it was Carcinoid Cancer due to symptoms and lab markers. I still felt puzzled by this.
I was started on a low dose cancer drug, but soon endocrinology said no we need to put her back on Pituitary and adrenal hormones, which I was quite reluctant.
You can't be on both one makes the other worse. Vice versa.
Eventually overruled I found myself back on the two hormones and getting electrolyte infusions three times a week, for five years, while still faced with the inability for them to balance the hormones correctly.
So they figured there must be something else going on.
I kept trying to trust the process but it still didn’t add up to me.
One benefit being an athlete you learn to know every single aspect of how your body works, and reacts from the inside out. And it was not responding right nor felt right.
Spring 2015 everything started to changed.
I found myself trying to walk daily, trying to get stronger while we still worked on balancing the hormones with only intermittent crashes, to now suddenly feeling very fatigued and less energy.
The hormones technically should be giving me more energy and strength, they were not.
Still, I did as they said, tried to hang in there but sure didn’t feel like the hormones were helping at all.
Spring 2016, a more drastic change in me literally overnight.
I awoke with a high fever, sore throat, headache and too dizzy to stand up.
Day two thinking I had strep throat, I went to urgent care. They started me on an antibiotic. But two days later called and said nope not strep.
We chose to keep me on an antibiotic for a couple more days.
Three days post stopping the antibiotics, I noticed that every muscle group was getting weak. Then one morning I had very little muscle control and could not stand up.
.
Due to this I fell tweaked my neck which was now unstable again and broke my ankle.
Sadly, my plea’s something wrong seemed to go unanswered.
The hormones disagreeing still more and me sicker each day.
.
I found myself trying to seek help more far and wide as no one was getting to the bottom of it.
Hindsight and being reflective is helpful.
Well in 2015 when everything was first changing, I had found a hole in my calf and I said I 'd been bitten by something that’s why I'm getting weak.
Then, Spring 2016 I felt something again bite me in the same calf which had now burrowed in.
That night yet another hole same as 2015 but this time I saw the bug and suddenly within days I’m very ill, and I fell.
I believe those bites were ticks but no doctor would concur with that and I had a hard time getting tested.
So, I sought the help of Naturopaths who eventually did a few tests and said I had been exposed to several toxins, as well as ticks and virus’s.
Still Western medicine was not of the same ideology they wanted more proof.
Meanwhile at the same time I am now dealing with instability in my neck and also getting nowhere with that.
In 2018, after I requested an upright MRI they found the instability in my neck and I had surgery. Two years waiting.
But it came with additional problems and a month post-surgery something shifted and now it is worse than before that surgery and additional problems.
Still I persisted until I was heard.
In 2021, I eventually sought help with a doctor in Seattle, WA who is trained as an MD, in Neurology as well as Functional, Naturopathic, and Environmental medicine.
This doctor, and her colleagues in her office, look at the body as a whole. Their testing far more detailed and specialized than Western Medicine.
They also go back in time with a complete history from infancy to see anything was missed.
They don’t just treat symptoms they get to the root of the problem and then treat.
Through the process these past couple years, we have done a lot of work and discovered a lot, validated a lot, tried some things but still have much work to do. A tedious process.
We know I have been infected by numerous pathogens and the ticks more than likely was just two more insult to set off a cascade effect.
We have come to discover that I have an Immunodeficiency whereby my B cells, do not work well. This makes me both susceptible and unable to fight viruses, bacteria, fungus. molds, candida, toxins etc.
So add in a couple insults, with two bites with multiple bacteria and reactivation virus’s, it was enough to send me into a tail spin and disrupt my entire body.
My mitochondria which is important for our cells and every part of our body to work effectively doesn't seem to be doing its job either. This is so important to help rebuild your body from the inside out and for energy production.
I seem to also be dealing some form metabolic issue and a wide range of deficiency's compounded by all of this which we are still trying to address. It’s all connected.
I had a bone marrow biopsey in January and a PET scan which showed some changes so I am currently awaiting bone scan to help rule our some concerns and hopefully an upper and lower GI scope the end of this month.
Sadly, so many delays and not getting to the bottom of what went so wrong immediately with the bites and whatever was happening when starting the hormone treatment has had a cascading effect.
Now the totality of the current situation is affecting all of me, including my neurological and nervous system.
This past year March of 2023 arrived with yet more changes in the stability of my spine.
And the systemic illness has taken such a toll on my muscle, ligaments, tissues, including extreme weightloss.
I now have a cervical bone which has somehow breached the nasopharyngeal wall. My pelvis, the inter-gluteal cleft tore from the sacrum and now my organs are prolapsing and causing serious issues along with the nerves to the spine to the brain.
Both these issues will require surgery and with a multiple disciplined team at a top facility. Both these surgical issues are rarely seen.
Fixing and treating things has to happen.
During the process we have had to change treatment plans several times and Covid delays, insurance delays and denials have hindered much.
This month June 2024, we’ve decided we can no longer delay, we need to start IV antibiotics, antifungals, and antivirals to treat some of the infections in hope to get me stronger so I can manage any surgery’s.
Between what’s happening with the spine and the systemic illness I have lost near complete function numerous times from my neck down.
The systemic illness has taken a toll on my body. It seems because of it, everything else been falling apart. So need to move forward.
Unfortunately, these Seattle specialists are not in network, so my insurance will not cover any treatments.
These doctors have been my only hope as I have been shuffled about since 2016.
They wanted to bring in palliative care and place a feeding tube in me, and also try plasmaphereses to clean my blood, bring down some of the toxic burden but now I am not considered strong enough for that.
We tried to get insurance to pay for immunoglobulin therapy to build up my immune system to help me fight off these things better but they would not approve.
Both the latter two treatments extremely expensive, eventually may still be options, but we first need to try to get a handle on the infections and intestinal infections, and other virus and toxins ravaging my system.
When the burden gets too great one can’t detox well, I am there.
This has been the marathon of my life.
Bluntly, I have two options; do nothing and slowly die or do everything in my power to continue to get the help and treatment I need.
I want to try. I want to fight I don’t want to give up.
To be transparent. I’m on disability and the last several years I’ve gone through any savings and depleted my 401 K.
I live a simple life, nothing extravagant in any way. I’ve been housebound for the last six years being too ill to leave home except for medical appointments, labs and emergency room visits.
Medical expenses have drained me financially and are adding up. A monetary figure that would be daunting for anyone if I shared.
Yet, facing the reality that my body struggles to maintain any homeostasis at any time, its critical we start treatment as soon as possible.
Just since the first year I have been to the emergency room every couple days. It’s time for this to change.
I am not a complainer but if I had one complaint it would be, there is no excuse to live like this anymore.
Not when we know there is help out there. Not when I know there are people who finally want to try to help me.
I just want a fair chance at fighting this as anyone else might have.
I don’t want to miss an opportunity at getting my health right once and for all.
Our healthcare system is struggling it’s changed and we all are aware of it. It’s getting harder for those with complex cases to receive the care they need let alone stay afloat.
I’m well aware I’m not alone.
But, to continue to receive care, it is incredibly hard to admit I need help. I can’t do alone anymore.
How can you help and how will the funds help me?
Financially, I need help with the IV treatments and any tests or treatments we need to do going forward.
I need help with travel expenses getting back and forth to clinic from Portland to Seattle, as well as wherever we end up sending me for surgery.
With multiple trips to Seattle it also often requires overnight hotels stays and so will traveling out of state for surgical care.
I require a caregiver, nurse or companion with me during travel and appoinments and often during other times which insurance will not pay for so I need financial support with this too.
I don’t have family or friends that can take much time away due to other commitments.
The systemic illness having taken so much physically, I will also need extensive dental work that my insurance will not cover.
A little more about me and my heart.
I have always been self-sufficient and not wanted to be a bother to anyone. So again this ask for help is so hard.
I feel I’ve worked too hard to keep myself moving forward that it would be a shame to have to give up now when we may be getting so close to turning things around.
In the last fourteen years I have continued to be very proactive in my health and still paid life forward by overseeing my Mother's care while dealing with much of my own.
But since 2016 it has been impossible for me to be of much help to anyone. Let alone myself.
I want to be upright again; I want to be able to walk again and move my arms body as one should.
I want to be able to see and speak and smile again.
I want to stop basically living in the ER.
I would give anything to just have five minutes’ reprieve of the horrific pain, and disabling symptoms that make it nearly impossible to get out of bed or function.
Most days I find myself wondering will I even wake up or make it through the day. A far cry from the Mary that I am or was.
I want for my family to not be worrying or living in fear that the next call they will receive is I’m gone.
I would love to be able to see my Grandchildren one day. I want to pay life forward again.
I am 65 this year. I have lost more than a decade.
Yet, I am determined that if I can get the much needed help, we can make this next decade perhaps a much more optimistic one.
.
Some may look at that number in age and see all I have to face and think it’s a lost cause.
Some may read how many things I am facing physically and think it’s an impossible overcome.
I don’t, I believe I have far more to gain and to give back if I get help.
Addressing and getting even one thing treated will be of help and will lead to being able to address the next issue.
In closing.
I wish to extend a very heartfelt thank you for taking of your valuable time to read about my journey and providing any support you can.
I truly would not go to these lengths to put myself out there if I did not feel as though I could be better.
I want people to also know any monies that are over and above what I may need, will be paid forward to someone else in need.
If you find that you can’t help monetarily, I do understand but hope you will consider offering up prayers of support.
That alone would mean the world to me.
I wish you all good health and much happiness,
Mary
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Co-organizers (3)
Mary Vandehey
Organizer
Beaverton, OR
Ann &
Co-organizer
Julie O’Dwyer
Co-organizer