Help Ashley Hold on Safely for Medical Relief
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Over the past three years, I’ve become disabled from complex chronic illnesses. I’m mostly homebound now and started using assistive devices for mobility and stability in the summer of 2021.
Driving isn’t always a safe option for me. Some weeks, my symptoms are so severe that I cannot drive at all. Walking can also be a challenge which is why I rely upon multiple devices to assist with mobility. These include canes and a rollator style walker.
My left hand now has at least one finger with a deformity which only has a 5% chance of successful correction through surgery. I’ve been told by multiple hand surgeons to consider it a permanent condition which could get worse, affecting more joints in my hands and feet without proper preventative treatment with expensive drugs. I can no longer make a fist with my left hand.
Once my condition had deteriorated to this point, I tried to seek medical care locally and wasn’t able to find knowledgeable doctors willing to manage or treat me for some of my complex conditions. I was told repeatedly that I needed to be treated at a research hospital. We don’t have those where I live. The closest are about a two hour drive away.
The pandemic complicated my search for medical care in a variety of ways. It caused a temporary closure of non-emergency medical facilities and offices during an acute onset of some of my debilitating conditions. This caused a delay in getting assessed, diagnosed and treated for at least one condition which causes permanent deformities.
Once the pandemic arrived, it had a major impact on the availability of appointments with medical specialists across the board. As many of you likely are aware, the wait list for many doctors is now measured in months. Some specialists can take a year or two to get an appointment. Many of the most experienced and well-regarded specialists have either retired, have stopped taking new patients or have succumbed to illness themselves.
Primary care physicians are also in short supply, especially for adults in my area. Since I was touched by the pandemic virus myself, I found that many medical practices preferred to not take me on as a new patient with lingering post-acute symptoms. As mentioned previously, I was told to go to Mayo or Shands. In 2021, I traveled and spent all my time and energy searching for care in clinical trials and research hospitals and facilities. However, I still needed a primary care to manage my care and the prescriptions I was being told I needed.
After getting waved off repeatedly by local primary care and other more specialty practices from 2020 through 2021, I was finally able to start with a local primary care physician in 2022 once I had insurance. Until that point, I had been using a combination of Telehealth and in-person visits with doctors and other medical professionals in South Florida and later in Jacksonville at Mayo Clinic, starting out as a self-pay patient throughout the end of 2020 and 2021.
I was likely exposed to the infamous virus while attempting to seek care in Orlando for my acute onset of my finger deformities in the fall of 2020. Vaccines weren’t yet available for my age group at the time. There weren’t even proper masks readily available. I was using cloth masks at the time of likely exposure.
It’s been hard to describe how my infection in 2020 affected me because my most frightening symptoms were neurological. I’m still not back to my pre-infection baseline of function. Some of the most frustrating symptoms are how my cognition, memory, emotions, sensory perception and sleep have been impacted. However, my symptoms have not proven to be psychological in origin or psychosomatic. If they were, I would have already been equipped with help since I’d been seeing a LMHC for a few years and throughout the pandemic.
There was a stage when some of the doctors at Mayo thought some of my symptoms might have just been due to aging and menopause. But then the test results started coming in to tell a different story.
Unlike many others suffering with post-acute mystery symptoms, medical testing has revealed multiple problems contributing to my ill health and various symptoms, some of which are disabling. In fact, some of the underlying issues are genetic and previously not identified, in part due to my having been adopted and having no family medical history.
There are logical reasons why I’ve been having a hard time caring for myself. One of those is that I have orthostatic hypotension which causes my blood pressure to drop suddenly after I’m upright for longer than a few minutes. Just this condition alone makes trying to care for myself extremely difficult. It’s only one of several disabling conditions I’m trying to manage and treat.
I never thought that I would be doing this type of fundraising for myself. I’m much more accustomed to being someone who has the capacity to lend others a helping hand. However, it has been slowly dawning on me that my circumstances are not what I thought they were.
As much as I hope to be, the truth is that I am not okay. If this fundraising appeal feels awkward to you, that’s because I’m very uncomfortable with asking for help.
I’m not good at this.
Since I live alone, there isn’t anyone else who can really tell my story. Just thinking about the past few years is a rabbit hole I can easily get lost within. I have a tendency to dissociate and have trouble with concentration. From what I gather, I have deficits in how my working memory functions. My cognitive issues and problems with memory can be unpredictable.
I get lost sometimes.
Forgive me as I muddle through this writing assignment awkwardly. There will be typos, outright misspellings, stilted language and grammatical errors.
Please accept my apologies!
I’m hoping to get some financial support to help me cover some of my monthly expenses which have been increasing in part due to factors related to my complex medical conditions and the lengths I’ve had to go to in order to get diagnosed and find the right treatments.
After countless appointments and testing at facilities hours away from my home, I now know that my chronic conditions include autoimmune disease and genetic disorders of connective tissue which are systemic in nature. I have genetic abnormalities which affect how my body makes different collagens, how my body processes certain drugs in my liver and the way my body stores iron.
Genetic testing is ongoing. It’s expensive and can take weeks or months for results. Since I was adopted at birth, I’ve had no clues as to what conditions run in my biological family. So there’s a lot to the psychological aspect of having this knowledge.
It can feel like it’s too much to face sometimes.
Of most immediate concern, I have complex vascular disease requiring multiple medications and invasive medical procedures which will increase significantly my risks for stroke, aneurysm, blood clot, heart attack, aortic dissection or even death.
There is a phenomenon happening which is stealing blood flow from my brain in a flow reversal or “bruit” known as Subclavian Steal Syndrome. I’ve developed a high grade stenosis in my left subclavian artery which some of the specialists are urging me to have investigated and corrected with an endovascular procedure.
My first vascular specialist team had scheduled me to have an angioplasty to address this in December of 2021. However, I postponed in order to get second opinions on my conditions and to put things like my finances and health insurance in order.
The next vascular specialist I consulted with warned me to wait and have more imaging done. One concern is that my other conditions make me much more prone to vessel rupture and aortic dissection.
Another concern is the unknown of how the virus (which shall not be named) might have damaged my vascular system even further. There could be micro clots in my arteries. There’s also a significant possibility of dormant virus in my tissues, including the lining of my blood vessels.
If you don’t know me personally, my name is Ashley Hoven. I could really use some help from whoever feels that they can and wish to support my efforts to maintain my course of treatments to prevent further disability and even more severe illness.
I’m in a complicated treatment regimen to control these serious conditions and to prepare for delicate vascular procedures which will require a period of recovery in which I will have even less mobility than what I have now.
I need to get caught up on monthly bills and set extra aside to be able to cover additional expenses related to my recovery period after the procedures. I will need to plan to be immobile for anywhere from a couple weeks to a couple months depending upon how things go.
I will need assistance during my recovery.
The procedures will likely take place in another city than where I live. I’ve consulted with doctors in Miami and Jacksonville so far. Anything out of state would be out of network according to my insurance policy.
I’ll need to pay for hotel or other temporary housing close to the vascular team. The travel expenses related to seeking specialist care in the process of getting diagnosed have already depleted my savings.
I’m facing a current crisis of cash flow which could force me into a move at a time when I’m not well enough to manage it. I’ve already had to delay important medical appointments, testing and treatments due to financial limitations. My focus needs to be on preparing for the procedures.
I need a little time.
Delaying treatment further could mean either I miss the opportunity to have maximum recovery and a possibility of full remission of some conditions or it could mean that I get much worse or have a catastrophic health consequence like a stroke or other potentially fatal acute crisis.
I really want to avoid any worse case scenarios if at all possible.
This has been one of the most challenging and lowest periods of my life.
I’m trying not to drown.
I know that everyone has their own challenges and responsibilities these days.
I’m grateful for whatever feels right to you.
You can think of it as buying me a meal or a mocktail, if that is all you can muster.
My direct payment info is included below if anyone is from outside the US or prefers to donate in a more direct manner.
If you prefer not to support with dollars, I would love to read some words of encouragement. Feel free to share with your networks if you believe my story might resonate.
Your support lifts me up.
For those who can or have already donated and supported me either in this campaign or privately, I deeply appreciate you! You’re keeping me going!
I can’t do it without friends and family supporting me.
My family is helping me from afar with many expenses for which I’m blessed and very grateful. But I am alone and far from them.
I’m still falling short and falling further behind.
The stresses of trying to manage the financial shortfalls are making it difficult to control my hypertension, insomnia and other conditions related to my autonomic nervous system.
My current medical condition is much more delicate and fragile than what I’m hoping to achieve in the future by finding and following through with the right treatments and by finding a way to have the time and space to heal and recover so that my conditions slow their progression and even improve.
I’d love to be capable of finishing passion projects and be financially more self-sustaining again in the future. I’ve been taking online classes and participating in advocacy efforts with some nonprofit organizations.
I want to be strong enough to be a better advocate for others and to give back. I feel that I have more I have to do give and do in this life.
I promise to do my best to continue sharing my story with you. In the event anything happens which limits my ability to communicate, perhaps this campaign will have provided some record of my experiences which someone might find useful.
Thank you for your patience and understanding!
With deepest gratitude,
Ashley
Venmo: @AshleyEHoven
PayPal.Me/PayAshWe
Long Story Long
They say that writing is revision. In that spirit, you will notice that this fundraiser description will change as I find better ways to verbalize my story despite my unruly cognition. I was hoping initially to craft one final version before posting. But that process was taking far too long.
Trying to communicate verbally is often challenging. It can take me a while to express myself and longer to get to the point. Please bear with me.
I find that I write in increments. My autoimmune condition affects my joints making my hands and fingers cramp easily from using them. My eyes are also affected by my conditions making them blurry, light sensitive and more prone to strain. I find that I need to take a lot of breaks and tackle tasks in an incremental fashion.
There are days when I just need to try to rest. Trying to push through can have disastrous consequences.
My mind is rather scattered from the overwhelm of my current circumstances. My foggy brain seems to resist focusing on certain memories from the past couple of years.
Where to begin?
I’ve been coming to terms with multiple diagnoses over the past few months after nearly two years of persistent attempts at medical investigations which have taken me from one end of my state to the other seeking answers and care. I have seen a lot of doctors, had a ton of testing done, found out many new things and spent a small fortune in the process.
I’m currently adjusting to medication management with several prescriptions including an old chemo drug and waiting to schedule a delicate cerebrovascular procedure.
Caring for myself and managing my healthcare appointments, claims, prescriptions and treatments under the current circumstances takes up all the mental and physical energy I can muster.
Who was I in the beforetimes?
In years past, I was what is sometimes referred to as a health nut.
I was gluten-free long before it was trendy. I’ve practiced yoga and qi gong for decades, albeit intermittently due to access or injuries. I sought regular treatments of acupuncture and massage since the mid-1990’s. I’ve tried various forms of mindfulness and meditation. In fact, I still follow a really lovely teacher today.
I don’t smoke cigarettes. I’ve experimented with sober living for years at a time when I just didn’t feel like having a drink or even the occasional glass of wine.
I’ve tried lifestyles like paleo, keto, South Beach, Atkins, alkaline, vegetarian, plant-based. I was even vegan and mostly consuming raw foods at one point. I have taken vitamins - lots and lots of vitamins.
As far as work, I’ve been a teacher who has held positions creating curriculum and doing instruction for both elementary age students as well as for college courses. I’ve also held business management positions for an architectural firm, an industrial designer and a structural engineer.
I founded and ran an entertainment management company to handle bookings for the musicians in a world music band I used to sing with once upon an eon ago. I’ve produced and performed in local theatre and various cultural events. I’ve helped friends make indie film projects. I even cofounded an underground music magazine.
I’ve worked in hospitality and fashion for local makers and restauranteurs. I’ve worked with nonprofits and helped friends and strangers raise funds in various ways for various needs.
And I still have multiple creative projects and plans in the works.
The Pauses before The Big Pause
However, each creative project and plan is now on an indefinite pause. I had been pausing things one by one as I slowly started to realize that I was struggling more and more. I had handed off a passion project with a lovely musician and removed myself from an active role to try to focus on a home renovation project which is another story for another day.
Despite feeling deeply fatigued and overwhelmed trying to keep up with all the threads of life, I still thought that I could muddle through by just limiting projects or putting things on hold.
I had experienced some significant health challenges in the past which I had found a way through each time. Based upon my previous struggles with my health and my relative success in overcoming challenges in the past, I kept underestimating the complexity of what was happening and the urgency of seeking care from the right specialist.
Hindsight is 20/20
I mention some of these things because I want others to take themselves seriously when something feels off. We glorify the hustle in our culture. But sometimes slowing down and tuning in plus seeking the advice of medical professionals is the most prudent step. Hindsight and all of that.
Prelude to a Pandemic Dream
I was in a car accident a few years ago in which another driver hit my driver side door as I was trying to exit the car. The door was torn from the hinges and my hand was on the door during impact. I followed up with my chiropractor and an orthopedic walk-in clinic. I had whiplash from the impact and soft tissue damage but no fractures. So I got treated by my chiropractor and the orthopedic clinic sent me on my way with a shrug. There were no other referrals offered.
I noticed having trouble with driving after this accident. My whole body was kind of subtly but perpetually locked into the position I had been in when the impact occurred. I kept seeing my chiropractor. However, I did start seeing a therapist in mental health and going to church.
Fast-forward to the only proper tropical vacation I have ever taken by myself as an adult. I caught the requisite dysentery and recovered. Then I seemed to catch something else which might have been dengue fever. And I had a tumble off a rental bicycle into a pile of construction debris, hitting my head in the process.
Despite my injuries or possibly because of them, it took me several months after being home to skulk into the office of my longtime chiropractor. In fact, I had been attempting to rehab myself with yoga and had succeeded in only achieving some version of frozen shoulder instead. I couldn’t raise my left arm high enough to wash my hair or to put on all of my garments in the customary manner. I also had a strange protrusion on the right side of my skull behind my ear. It felt kind of squishy.
I asked my chiropractor to please be extra gentle with making adjustments in my upper cervical spine. After weeks of gentle chiropractic adjustments, my dear Dr. Dan urged me to get seen by some kind of specialist. He knew that I had been to an orthopedic before but he thought maybe a neurologist would be a better choice. I took his advice under advisement but delayed.
In the fall of 2019, while still “humoring” the impinged left shoulder, I caught what I assume was a rather intense Influenza A. I had trouble breathing but did not try to go to the doctor. It was a scary bout with whatever respiratory virus had me in its grip. But I prayed (begged) and survived.
On Christmas Day of 2019, I felt my lower back spasm along with my hips and sacroiliac joints as I was packing my luggage to fly back home from a family trip. I had a dog sitting gig when I got home and managed to push through. But that effort landed me in bed completely immobile for several days. Trying to get out of bed or lower myself to the toilet was excruciatingly painful and nearly impossible. I finally dragged myself into see Dr. Dan who noticed that my gait was off. He again urged me to go see another doctor to get more investigation into what was happening.
Pandemicamonium
In January of 2020, my left shoulder finally released but it came with sensations of electrical shocks traveling from my shoulder down my arm into my fingers. I thought that perhaps maybe this was a “good sign” that the nerves had been pinched but were coming back online. However, I started trying to find a neurologist who would allow me to self-refer.
In addition to the issues with my shoulder, hips, back and the lump on my head, I had also been experiencing vertigo which I had previously chalked up to having had too much Prosecco in the previous week. But now it was happening despite my having been sober-curious and without any adult beverages for months.
The vertigo got so severe that I couldn’t drive my car around town to run errands. I asked my therapist to try to target the most recent car accident as well as any prior car accidents I had ever had in our sessions. I thought the vertigo was a psychological symptom tied to PTSD and that EMDR therapy could fix it.
Motivated by the odd lump on my head, I tried to call more medical doctors to get an appointment. I had an inkling that the new virus in China was inevitably heading our way. And that might change things.
During the first few months of 2020, I started losing circulation in my arms during sleep. It would alternate sides but more often occurred on my left side. I also noticed that my heart rate would increase when I lay down to sleep, especially on my left side.
Body Electric
One day in April of 2020, I was furiously messaging people on my phone about the pandemic when it suddenly felt like I was being electrocuted in my left hand and left arm.
My middle finger froze in an odd position with the middle knuckle locked and the top knuckle stuck in a sharp angle. My ring and pinky finger were also tingling and throbbing. All three fingers started to swell. I could force my middle finger middle knuckle to move using my right hand to manipulate it. I played with it. I assume as long as I could move the knuckle, it was going to be okay.
Stay-at-Home
Now, it did actually occur to me that it would be a good idea to seek immediate medical attention. At the time, my county was under a “stay-at-home” proclamation. Businesses were closed, including many non-emergency medical providers. In fact, there were stories of people having surgeries or other medical treatments postponed in the interest of preserving resources for acute cases of COVID-19.
So I took everything into consideration and decided that, surely, whatever this was could wait. I did not present myself to an urgent care, walk-in clinic or an emergency room. I thought I was doing the right thing and being a responsible citizen.
By the time I was able to get an appointment after the Florida-friendly version of “lockdown” was lifted, the swelling of my fingers had subsided. But my left middle finger middle knuckle was now locked in place. No amount of handling it would make it budge.
I had tried to fashion my own hand and finger brace contraptions by ordering assistive gear online and making some bespoke adjustments. My left ring and pinky were also limited in range of motion but with no locked joints or obvious deformities.
I thought I had been smart to avoid getting exposed to the virus. I had arranged a system for getting groceries and supplies. I had no idea that my reluctance to risk catching the virus had made me miss a critical window of time to try to save the integrity of my finger joints.
Freedom!
Once the stay-at-home was rescinded and elective medical procedures permitted to be performed, I took the obligatory drive-thru rapid test so that I could get an appointment at the orthopedic clinic.
At this point, we were still being advised that masks weren’t necessary for regular people. Out of an abundance of caution, I had acquired cloth masks which I wore religiously any time I poked my head out of my apartment door. I also had some snazzy kerchiefs that I layered over the masks so I could look cool rather than paranoid.
I went to the orthopedic clinic, had x-rays done and was referred to the hand specialist. The x-rays of my left hand and left shoulder showed no fractures. There was a little arthritis in the shoulder but otherwise everything looked fine I was told. The PA mused that I must just have soft tissue damage. He didn’t seem too concerned.
Reality Check
About a month or so later, the demeanor of the hand specialist was in stark contrast to that of the PA from the first appointment. The hand surgeon told me that I had a systemic illness, likely of an autoimmune nature. That it had caused most-likely permanent damage to the joints on my left hand.
He ordered some blood work to evaluate for a few of the most common markers for autoimmunity and systemic inflammation. These were not tests he normally ordered for his patients. But he wanted to help me get answers as he was aware and warned me that getting in to see a rheumatologist, especially now that the pandemic was in full swing, would be nearly impossible.
The kind doctor had showed me a list of conditions which were the most likely to cause a swan-neck deformity. The list was frankly a bit terrifying. It included autoimmune conditions and other serious medical conditions like rheumatoid arthritis, cerebral palsy, stroke, Parkinson’s disease, traumatic brain injury, psoriatic arthritis and scleroderma.
I had not been prepared to be told anything like this. I had assumed that whatever was happening was just some mild injury which could be corrected. I thought it would be a matter of getting a shot of some sort, probably a painful manipulation to get it back in the right position and some bracing.
Not only did the doctor tell me that this deformity was almost always permanent, he warned me that once it happens in one joint, it can happen to any joint in any finger or in any toe. The only way to prevent this would be to determine the correct underlying illness or disease and to get that under control. I was completely taken aback by this turn of events. The shock of it startled me into action.
My first mission was to get the lab work completed. Most of my levels were within normal range or negative for markers of autoimmunity, except for one. I had a sedimentation rate which was high, very far outside the normal range. I had no idea what that actually meant, though.
The Quest
So began my quest, in earnest, to discover the true nature of the conditions underlying my finger deformities amidst our ongoing pandemic. I’m still on this quest today over two years after the acute attack which caused my fingers to swell and my joints to stick.
I have finally received some preliminary diagnoses and have part of a treatment plan in place to control at least some of my underlying conditions and prevent further damage to my joints and connective tissue. The underlying conditions are complex. The more doctors have investigated, the more has been discovered.
This One Goes to Eleven
To Be Continued . . .
Organizer
Ashley Hoven
Organizer
Orlando, FL