Je Saist: Glaucoma Medical Bills

$350 of $5,000 goal

Raised by 4 people in 4 months
Je Saist  EVANS, GA
Well... Go Fund Me encourages me to tell my story; which means stepping all the way back to the year 2000 and revisiting parts of my life that I have tried to avoid talking about. While I maintain presences on social networks like G+ ( https://plus.google.com/+JeSaist) and Twitter  ( https://twitter.com/zerias) I very rarely ever share personal details of my own life. While I have published or worked on several webpages over the years; such as the quasi-on-hiastus  http://www.linux-guides.com/ site and the still active   http://www.gamenikkiinexile.com site; and have run a few blogs, I have a reputation for simply disappearing for months, if not years, on end. Please bear with me as I tread over this older ground as it pertains to the medical issues that bring me to GoFundMe now.
The story that brings me here starts with enlisting in the US Army. At that time I barely passed the minimal physical requirements to join straight out of high school. During basic training another recruit with near on twice my body mass landed on my back, but not during any training exercise or maneuver. The accident occurred in the barracks; a simple matter of a much larger person occupying the top bunk. 

After the accident I personally experienced severe pain; and even the most minute touches to my back were enough to send me collapsing to the ground. The most vivid memory I retain is waking up in the middle of the night unable to move my legs; dragging myself with my arms to the showers, and running the hottest water the showers could manage to try and get my legs to loosen up. The accident eventually lead to being chaptered out of the US Army; but being young, naive, scared, in pain I couldn't communicate, and faced with Army doctors who couldn't find anything wrong with me; I signed anything placed in front of me that would just end the nightmare.

The nightmare didn't end though. The leg cramps didn't go away. The shooting pains in my back didn't go away. In 2003 I experienced the first of a series of events that has repeated itself more times than I would ever care to admit to. I woke up in the night with my legs once again cramping; only that time they didn't release. Most of the time tendons will tear long before the muscles will; but, well, mine didn't. My own muscles quite literally ripped themselves apart; creating an injury that the physical therapists and sports medicine doctors I found myself being referred to had never seen before.

During one of those sessions the doctor had pulled out a little pen or something and was poking my right leg and asking if I could feel it. I could, but I couldn't tell where on my leg I was being poked. I described the differences in tactile sensation as if my left leg was a 600dpi inkjet; and my right leg was a 9x9 dot matrix. 

The sports medicine doctors I had been referred to eventually referred me to neurosurgeons. Simple pats to the back had become events that would leave me squirming in agony, if not scrunched up in a fetal position with mouth foaming. Coughing fits that felt like getting a cattleprod rammed up my backside; leaving me feeling completely fatigued.  I couldn't hide my limping any longer, and I couldn't perform weight loss exercises without setting off whatever was wrong with me.  

Then in 2004 it looked like there was some light at the end of my harrowing tunnel. A nerve conduction test revealed that there was indeed a blockage... somewhere. There was a measurable difference, a massively measureable difference, in nerve responses. The neurosurgeon at the time gave me a diagnosis of a herniated disc causing a pinched nerve. One of the few times I broke my silence on what was wrong with me to post to LJ ( http://saist.livejournal.com/9884.html

Which nerve, and which disc, was as of yet undetermined; which would of course require more tests and procedures. Shortly after this diagnosis and finally hope that my pain would be ending I received a letter from my insurance company. Their medical board, which contained absolutely zero Neurosurgeons, determined that the Neurosurgeons were wrong, there was nothing wrong with me, and insurance wasn't going to cover anything more. 

And with that... I was on my own. If I wanted to continue trying to track down what was wrong with my nervous system, it'd be on my own dime. 

I relate these events because they have affected my life since. I'm quite frankly ashamed to put pictures online now because of how much I weigh. My ballooning weight sent my blood pressure skyrocketing, and I've been on some form of medication for blood pressure since at least 2007. Simply trying to work a 40 hour week means investing in topical analgesics and/or pain killers and muscle relaxants like Naproxen or Tylenol 3. I now wear heavy knee braces just to try and walk normally. 

In a lot of ways I feel trapped. My physical issues mean I can't simply go out and get a second job. In the current US Economy I'm grateful and thankful for the job I do have that at least get's me some kind of income. I can't simply go out and buy insurance either; largely due to the premiums quoted for my physical condition being out of the range of my paycheck.

For years now I've basically broken financially even; and then; well... things have gotten worse. I don't just mean subsequent issues with the nerve injury flaring back up.

About a year ago now I turned to relatives to cover a trip to an eye doctor. For months I had been waking up effectively blind in the left eye with stinging pain. The eye doctor trip eventually resulted in what was described to me as a surgery to quote/unquote "Exfoliate the eyelid" to remove tissue that was scratching the eyeball itself. The cost of that surgery went to Care Credit. 

In the following months another less than pleasant medical event occurred as one of my teeth shattered on a chicken bone. A trip to a dentist later and Care Credit was slammed full to cover costs of not just the shattered tooth, but to fill and cap two more cavities.  

Then in the past months the fiscal equilibrium paying off the eye surgery and dental surgery was, for me, shattered. The eye test after the surgery revealed that I had been incorrectly diagnosed by another eye doctor years ago; and that painful migraines were not the result of a frequency sensitivity, or colorblindness, or the spinal nerve issue. I needed corrective lenses; and it was during those tests to determine what prescription that the eye surgeon noticed something else was wrong.

Just under a month ago I sat down for a Field of Vision test which confirmed the doctor's diagnosis: Glaucoma

Going blind isn't a joke anymore. I actually am going blind.

The diagnosis means additional examinations by the eye surgeon, as well as prescription medicine for therapy. There are surgical options which are just simply out of the reach of my current fiscal means. It's those costs which now brings to me to here and Go Fund Me and looking for $5000. 

The $5000 number is based off about how much I owe Care Credit in total over about the next 6 months. Being able to just pay down the current Care Credit debt would free up a lot of the pressure to deal with the costs of Glaucoma treatment; and possibly consider a more permanent surgical alternative to eye drop treatments.

Those who have read my sites know I'm not exactly the world's best at asking for Donations or Charity. I'm not all that good at expressing "Thank You" or "I appreciate that."  What would it mean to me to able to afford things like getting the A/C in my car fixed? Maybe replacing my phone and it's cracked screen? Or possibly even replacing my bike and it's bent frame so I can resume one of the few exercises that didn't cause problems? The kinds of things I've just had to set aside time, and time, and time again just to afford medical bill after medical bill. 

I'd love to ask for more to just cover the costs of the eye drops I will be taking for the foreseeable future. I'd love to ask for enough money to know that laser surgery was a viable option to look at right now; not at some future date.

I'd love to be able to afford to follow up on the nerve injury. I was perhaps fortunate recently to have a doctor working pro-bono look over my nerve symptoms and match my symptomatology with a diagnosis of traumatic spondylolisthesis of L5 on S1. So now at least I have a possible and plausible starting point over why the nerve injury was so difficult to diagnose so many years ago when I had insurance; and possibly even a surgical option to actually fix the nerve issue. That's just going to take money that I just don't have.

Just have a night's sleep without some kind of medicinal augment. Maybe being able to focus again on writing a fiction story I was working on.  ( https://drive.google.com/drive/folders/0Byr64UrbJu3iX0JWUWxPcmcyVEE?usp=sharing)  

I'm still very new, and in many ways scared, at the thought of asking for charity from others. What sets me apart? What makes me worth the effort?  Questions I'm not sure I can answer. At some point though... I have to start talking about what's wrong with me... and start asking for help... or I just wind up in the same dark places I've been in before. 

                                             * * * * * * * * *

This post has been sitting open on my web-browser since the 27th of October. As I read over, and over it, self-doubts and concerns jump out. Questions that I think would be asked; but I haven't answered. 

On Advice some of what was here has been removed. 

                                              * * * * * * * * * * * * * *

In a lot of ways I don't want to talk about my life because I feel embarrassed and ashamed by it; but this is my story. It's a look at what's wrong with me, what steps I've taken before, where am I'm not now, and why I need help.
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Update 2
Posted by Je Saist
4 months ago
As noted in the original campaign post; I am terrible about communicating what is going on with me. So... um.. there was a 6-week checkup this morning.

I'm currently taking Latanoprost Ophthalmic Solution to deal with the increased pressure. According to the eye surgeon the pressures in my eyes have normalized... which is... good? I think?

It also turns out that I have greater than average thickness in my corneas, which affects the pressure readings. Apparently this means that the pressure numbers have to be adjusted against the thickness of the cornea; which in turn means that some of the panic-inducing pressure figures were not as bad as first feared.

Also of note; during the vision check; I did better with my current prescription glasses off... than with them on... so now I've also got a new prescription for lenses.
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Update 1
Posted by Je Saist
4 months ago
Wow... um... Thank you to everyone who has given so far. :D

Please share my story around your own social networks.
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$350 of $5,000 goal

Raised by 4 people in 4 months
Created October 31, 2016
3 months ago
Jennifer Jewell
4 months ago

For all the rock candy over the years. Love, a very shiny Copper Rust.

Kim Macomber
4 months ago

We love you, Sai. -super gentle air huggles-

Mercedes Lackey
4 months ago
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