Help Matt Barnette Recover From Rare Disease!

Hey everybody!

My name's Matt, and I'm a video editor by day and a caretaker for my wife, Mandy, who has multiple sclerosis by night.  I love to play guitar and draw and all sorts of things with my hands.  I also look good in a tiara, mainly because I don't have any photos of me video editing.  




So, here's the story thus far. I've had a rough year so far.  I had an eye injury which made me wear an eye patch for two months, which was weird AND embarrassing and right as that was over, I was at a a health screening at work that would apparently lower my insurance rate if I took part, so I did, and it told me things I already knew like "Hey, you're fat!" and then somethings that I did *not* know, like, "We think you have diabetes!" and "Maybe leave work right now and immediately go see your doctor!" 

I don't have a photo of them telling me I'm fat so here's a photo of me and a Ferengi from Star Trek when I was a teenager.

So I went to the doctor and my fasting (as in, I haven't eaten in at least 12 hours blood sugar was 278,  Normal people are typically like, 60,70 in fasting and then maybe 120'ish after a big meal.  Also, my A1C, which is the sort of walking around average of what your walking around average blood sugar should be was pretty ridiculously high.  Most normal folks are somewhere between 5 and 6. Higher than 6.2 is considered "pre-diabetic" and mine was....THIRTEEN. 

So my primary care physician and I ran at this full force. I completely changed my diet, started diabetes medication and my goal was to kick diabetes' ass. 

Five months later, I do a workup of my blood/urine/etc at my endocrinologist and my A1C had dropped from 13 to 6.2 (essentially that of a pre-diabetic) and my fasting blood sugar also dropped from the 270s to the 120s.  Still higher than most folks, but an over 150 point drop for me.  Probably didn't hurt that I'd changed my diet and lost around 40 pounds.

I went from fat guy with diabetes that was out of control to skinnier dude who had it under control yay!!!!



My endocrinologist and my primary care physician both told me how proud that I'd kicked diabetes' ass and that if I kept this up I could probably just control it with diet and exercise within a year.  

SO -- Imagine my surprise when one of the hallmarks of your body going bad due to diabetes started happening to me almost immediately after this.  My hands and feet started going completely numb. I started freaking and looking up nerve issues related to diabetes and read up on peripheral neuropathy which is a common nerve issue where if you DON'T take care of yourself, your diabetes and antibodies can attack your nerves and cause you foot and wrist pain, amongst other issues. 

The next morning I woke up with a sore back, like I'd pulled a muscle.  I even brought it up to my co-worker. The next day was a Saturday and the pain was much more intense. I had to lay on a heating pad most of the day to try and get any comfort at all.  Then about 4 am it was so unbearable I did something I've never done before...I went to the emergency room. 

Visit #1

The ER doc laughed it off and said I had "back pain with stenosis" even though I was telling him it hurt worse than the kidney stones I had once and  that I was absolutely miserable.

When I finally got home that night I was frustrated, still in pain, but took the painkillers they gave me and tried to go to sleep and felt some hints of tingling in my face.

The next morning I woke up and half my face was paralyzed.  Couldn't blink.  Couldn't smile.  Couldn't move my lips. Couldn't move my eyebrows.



This was, of course, terrifying so I called my PCP and she told me "yeah go to the ER. "   So I did and they did triage on me and literally LAUGHED IN MY FACE because  it was "just a viral thing" and would "basically take care of itself'

They then proceeded to sit me in the waiting from for over SIX HOURS before being incredibly dismissive and sending me home with steroids. 

That night as I was going to bed I realized I'd been having issues getting out of the car and getting up off the bed and that my legs and back were both completely sore. 

Woke up the next morning still in pain and my wife said something that made me laugh.  She then looked at my face and told me to smile, so I did.  She told me to  blink both eyes.  So I did. She told me to smile, so I smiled again!  She said to show me her my teeth.  I asked her why she wanted me to do all that stuff and she said "you didn't do any of that stuff...your whole face is paralyzed."



I tried to get an appointment with my PCP doctor and finally did.  On the way to the car, using a cane, I fell down.  I literally couldn't stand back up on my own. My legs were completely powerless. I laid on that ground for easily 30 minutes. I pulled myself through my yard on my elbows to get into my car where I proceeded to do all my daily errands without leaving the car.

I also went to my mother in law's house and got a walker I knew she had so I could get back to my house from the car....which I *almost* did before tripping on my last step up to the porch...and falling again. Even though I had a walker.  My phone and keys went off the porch and I had to try and get them with a stick that broke at least three times.  Then once I got the door unlocked, I was too tired to crawl so I laid on my back and inched with my head and butt through the living room in hopes that I could get to a chair in the hall way to try and get upright again. 

The view from my POV after fall #2

Called my sister in law. I'd gone from sore back to unable to walk, full bilateral facial paralysis and debilitating back pain with extreme numbness in hands and feet along with my bladder and face.  Time to go the E.R. but this time my PCP called ahead and told them EXACTLY what to do...

Me showing the full range of facial emotions I could with a fully paralyzed face.  this was as we were heading to the hospital.  FUN TIMES AHEAD.

My sister-in-law and myself (with a completely paralyzed face) about to be admitted to the E.R.

Thirty minutes later I'm getting an MRI and a lumbar puncture and what I thought was diabetic neuropathy finally had a name: GUILLAIN-BARRE SYNDROME.


Don't let me gloss over what a lumbar puncture is, by the way, it's also called a SPINAL TAP and it's where a doctor puts a needle IN YOUR SPINE and oh boy if you haven't had one of those especially from an impatient resident doctor who doesn't let the xylocaine number your back first, boy you haven't LIVED. 

GBS is a fairly rare auto-immune disorder that essentially sends your anti-bodies into full idiot mode and then attack anything sick in your body with an atomic bomb instead of a band-aid. The numbness in my hands and feet and face weren't diabetes related. I'd handled the diabetes...it was GBS attacking my nerves.  The four bulging discs in my back that were inflamed causing tons of pain?  GBS attacking them because they were *slightly* bulging. 

Me with my super fun jugular vein catheter that I *only* got to wear for two weeks. 

I was put in ICU immediately, which is scary enough, but then had a minor surgery that day where they installed a "Quentin" Catheter...in MY JUGULAR VEIN.  Yes, the huge vein in your neck.  I had three giant tubes sticking out of my new for two weeks, because they were using said tubes in my jugular for a treatment called Plasmapheresis where essentially every other day they use a sort of dialysis machine to suck out ALL the blood in my body and using a centrifuge, separate my white and red blood cells.  My plasma, presumably with all the bad antibodies inside, got to go away and new human albumin (plasma) was mixed with my blood cells and reintroduced into my body, at a much colder temp than the blood that just left, which put my body into shock almost every time we did this treatment. 

Hey guys!  That's literally ALL THE BLOOD FROM INSIDE MY BODY.  It's being replaced with those glass bottles on the far right which are replacement human albumin. 

The good thing, though, as days turned into weeks and the crippling boredom that living in a hospital brings with it, is that with every plasmapheresis treatment, I was regaining strength.  The neurologists seemed impressed by how quickly I was responding to it and a good majority of them believe we were making such progress because of my catching the GBS *so* early in the process. [[

Don't get me wrong, it wasn't all fun and games and four hour long treatments of having all my blood taken out of my body...I also kept count throughout my stay and was stuck over 170 times while I was there for one thing or another!  Here were my arms the day I freaked out and told them if anyone else came for blood that I would also be getting some from them.

So eventually I graduated from ICU to the Neurology floor, and finally to the BHRI where I was enrolled in physical and occupational therapy to essentially learn how to walk again and use my hands.  It was grueling but so satisfying to start being able to do things on my own again. They made me only use a wheelchair so that was interesting as well because I guess they're not wanting anyone to fall since the rehab center has lots of spinal injuries and worse.  But, having some autonomy back was great. I was so tired of sponge baths and people having to help me use the bathroom and feeling woefully useless. 

Wheelchair Man - possibly the worst Super hero.

Finally after almost the entire month of October 2018 in the hospital and after a ton of great friends helped me out with meals, clothes, friendship, visiting, etc...I got my discharge date!

Then I got a phone call from my cousin John about his brother, my other cousin, Kyle. Apparently their brother Kelly (Kyle's twin) found Kyle in his apartment, dead from an apparent cardiac episode.  

I was so distraught, and I knew I should have been happy to be going home but I couldn't stand to stay there one more second knowing my beloved cousin was out there somewhere like that, so I asked and was allowed to leave a day early so i could be home and mourn properly. 

I didn't get to go to his funeral (doctor and family orders) but I *did* get to see my cousin John this past Saturday when he rolled through town and I got all the info on how it went and it was lovely seeing him.  He was laughing at me walking with my cane, but whatever....I need it for now. 

My Cousin John and I in one of my first public outings.  Still need the cane a little bit but I'm getting better slowly but surely. 

I still have numbness in my face, hands and feet.  My feet have awful nerve pain that burns like fire in my feet if I'm even a few minutes late on my schedule medication for nerve pain. I carry around a pill container that is laughably huge with tons of meds to take multiple times a day just to attempt to be normal and the world is very overwhelming after a month in a very insular environment...

So -- here's where you come in. 

During my time in the hospital, I used up all my vacation and sick days that I had left.  A lot of my sick days had already been used helping Mandy with MS related issues when she felt terrible, so I quickly lost all those and went into the LEAVE WITHOUT PAY part of being under FMLA protection.  So I haven't received a paycheck in almost a month, and that means certain things that need to be paid for haven't...and I need some assistance from people who can understand this bogus situation that I've been in that I no way asked for that is totally screwing me over monetarily. 

Never mind the fact that I just got the first set of hospital bills and oh my god, just seeing the actual hospital billing part before insurance helped out some was panic barf inducing.  The full cost of my stay at the hospital from October 3rd to October 26th?

ONE HUNDRED AND THIRTY THREE THOUSAND FIVE HUNDRED AND SEVENTY NINE DOLLARS

$113,579

Thankfully my insurance is pretty good and a great deal of that miserably and ridiculously high charge is taken care of but we still owe a few thousand along with things that were missed while I was not being paid and recuperating at the hospital and at home. 


So if there's any part of you that can relate to an issue like this where you, through zero fault of your own, become incredibly ill, and in my case, lost control my legs, hands and face in under a week with a disease I'd never even HEARD of...please find it in your heart to either help us out by donating or sharing this to some folks who can take a minute and help us out.  We'd appreciate it immensely if we could, y'know, keep our car by paying its bill since I won't actually be making money for the next couple of weeks, amongst other things. 


Any amount helps and we appreciate anything you can do to help us get back to square one.  This has been a huge kick in the seat of the pants for both of us and we're just constantly exhausted and trying to do what we can with the very short bursts of energy we have. 

Thank you in advance for your support or for sharing this to people who would be willing to support us right now when we really need it most. 

Thanks again for reading this!

Love, 

Matt and Mandy

OH YEAH!  The crazy jugular vein catheter came out just fine and is healing up nicely.  Here's a photo if you're interested!  Thanks again for reading and contributing money or sharing!