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From a "normal" girl living life, to waking up one day a quadriplegic. This is my story.

Knowledge is power, and while it's not easy to "ask for help," I am appreciative of all the help I've received and hope to keep sharing my story in hopes of helping others! I am SO thankful in this journey!

I woke up Oct 9, 2014 around 3am with a screaming headache, the worst body pains I've ever had, nausea and could tell I had a fever. I had gotten the flu shot the day before, I just figured I'd gotten the flu from the flu shot. About two hours later I felt even worse, I stumbled into my living room and retrieved my fancy thermometer and fell back into bed; I thought I was going to pass out. I had a 103 fever (and I sit low, usually at 97.2) and hoped I could sleep it off. I sent an email to my "adopted mom" who lives next door to tell her to stay away since I figured I was contagious. A couple hours later I knew something didn't feel right, i was having a hard time moving. I used Siri to google "can I get the flu from the flu vaccine." The CDC said no, and if you're having fever, nausea, aches, etc then you may be having an allergic reaction to the flu shot. I called Brenda, and could only say " I need you." Within 30 minutes I was a rag doll, unable to move, could barely talk and hardly see. Her initial plan of carrying me to the car went out the window and she called 911.

Luckily, I am aware of my own medical issues and how difficult it would be if I needed to have all my medical information available and ready for an emergency, and I did. They were able to find my ICE(In case of Emergency) notes in my phone to see my medications, allergies, medical conditions, etc. This later proved very important as they tried more than 3 times to send me for an MRI which would have killed me due to a medical device implanted in my back, and they wouldn't have even known without seeing this important list.

I was able to hear well, and despite my fever making me feel loopy and "out of it" I fully understood what was going on, but could hardly open my eyes and it was all blurry when I did, and could barely speak, only getting out single words sporadically.

Upon arriving at Parkwest the Doctors were abuzz with what to do and what was causing all of these symptoms. They didn't feel confident that it was a reaction to the flu vaccine, but couldn't rule it out yet. I couldn't tell you how many needle sticks I got that first day, but it's safe to say over 30. They performed a myriad of tests, questioned my friends as much as possible, and questioned some more. I don't remember too too much about that day, but I do clearly remember the spinal tap and thinking to myself, "wow, this is crazy, what on earth is going on." I remember at one point the doctors discussing my room being ready for me, and for my friends to wait and they could see me once I was settled in my room. I knew I was being transported, but couldn't see or talk to find out more. Finally the bed stopped and I heard "Welcome to Intensive Care, we will find out why you're a quadriplegic" If I could have screamed at the top of my lungs, I was so shocked, and then scared that I ended up in intensive care....? really? I was hooked up to a bunch of machines and wanted so badly to say SO many things but couldn't. My fever wasn't breaking and I felt awful and in excruciating pain. I cried, a lot, but not from pity, from fear, frustration, confusion and pain.

The next few days involved a team of Doctors, the CDC was on speed dial and they started to be able to mark things off the list of possibilities, which was something. The 4th day I was transferred to the trauma unit and had regained some minimal movement in my fingers and toes, and could open my eyes at least a little bit and could finally speak, but I was truly exhausted. One of the doctors came in, and I'm so glad I wasn't alone. He said that they weren't sure what had caused this, but they thought somehow my body went into trauma and my brain shut off communication with my muscles and nerves, and that it was unlikely that I would improve and needed to be prepared to live this way forever,and they wanted to transfer me indefinitely to a long-term care facility. That was definitely terrifying news and I cried for about 2 hours and pretty much just shut down for a few hours trying to somehow digest what I'd been told.

Thankfully, as always, I digested what the Dr. had said, and decided that I wasn't just going to be ok with that answer, I felt like they were just getting rid of me since they couldn't determine the correct diagnosis. The following day we arranged and fought and I was transferred to UT for a 2nd opinion.

UT put me on the Neuro/Trauma floor and everyone was very friendly there. UT decided to re-do several of the tests that had been prior performed at Parkwest, as apparently if performed too soon after the first occurrence it could have shown a false negative. Some of the tests were absolutely grueling and painful to the point of insanity. At this point my arms were covered in needle stick sites, and it was difficult to find a spot to use that hadn't been used too recently. It felt like a circus act, or like I was an experiment. I had started to make more improvements, though, with daily Physical Therapy (PT) and Occupational Therapy (OT). i was now getting back some movement in my arms and neck, but still no reflexes in my legs. I felt like I hadn't slept in weeks, and,well, I hadn't. Someone was in my room every 45mins-1hr throughout the day and night so I truly didn't sleep. I got to the point where I would still keep my eyes closed while they were drawing more blood, starting a new IV, etc. After several days there my blood pressure started dropping sporadically. One morning at 5am it was 68/53 (my norm is 120/70) and I remember feeling dizzy and suddenly my room was full of doctors,nurses, shouting and drama. To this current moment I am still experiencing the quick, unexpected drops but they think it's due to the non-use of my legs. After a week and a half UT had come to a diagnosis, and one that we questioned Parkwest about, and they completely shut it down as even a possibility. I had started taking Plaquenil approx 2 weeks before the incident, and one of the rare potential side effects is paralysis, extreme muscle weakness possibly permanent and diminished or lack of reflexes, as well as fever, headache, nausea, etc.

It felt good to at least have a "reason," what didn't feel good is the fact that it's not necessarily reversible, and the half life of the drug is 3-6months, which means it takes that long to be truly out of my system. It was determined that I needed to go to Patricia Neal for intensive inpatient rehabilitation to reach my maximum level of independence. I am very glad that Patricia Neal accepted my case, and I transferred 10/22.

I arrived 10/22/14 at Patricia Neal, the closest group that I fit into, based on my being "paraplegic" was with the Brain & Spinal Cord Injury which is a lockdown unit ( I think they were worried I'd try to escape). Everyone is super friendly here and I really like my team of Doctors and therapists. I have made great improvements. I am now wheeling myself around in a wheelchair, and push myself as hard as possible each therapy session, so I am WIPED OUT at night. They keep the day pretty regimented, but still enough time to relax and rest up. I was discharged 11/12/14 from Pat Neal.

I know in my heart I will walk again, but I don't know when. They can't promise me that I will walk, my legs still don't have reflexes. I can and will still relearn how to walk, without reflexes its much more difficult and requires a lot more time and probably braces so my feet don't drag ( no Forest Gump jokes please). I will be leaving here in a wheelchair. That's great news but that's also terrifying news. Learning how to live life in a wheelchair is a HUGE learning curve, and so many things I can't let myself even begin to think about as I get too stressed out. My insurance actually doesn't pay for as much as I thought they would. They pretty much cover some of the wheelchair and bedside commode. I require a custom chair that will run $2-3k, and approx 25 other "aids" just to get through the day.  My house required quite a few modifications to be liveable for me (I live alone).  So, from when I was discharged in Nov-mid January I stayed with close friends Jeff and Dale.  They graciously built a ramp into their home, and made accomodations for me to stay there, and even be able to bring a couple of my pups along, too!  Before I would be able to move home I had to be pretty much self-sufficient.  So, I worked hard to do things on my own, to fail and then figure out a way to do things differently.  I also went through the process of buying hand controls (portable ones) and teaching myself how to drive with those, and then getting licensed for them.  It was actually a rather simple undertaking, yet there is very little in the way of guidance online or through the local DMV's.  A lot of calls I made for answers did not pan out, as it seems there is a lot of gray area surrounding this process.  All I had to do was practice with the hand controls, then set up an appt at my local full-service DMV and take a road test.  I then got my license with a couple modifications (specialized/custom hand controls and an automatic-drive vehicle only). No hand controls can currently be used on manual vehicles.

Moving home and getting settled took several weeks, and still looking for more answers to treatment.  Mid-March 2015 my rheumatologist felt she had a new, correct diagnosis for me, transverse myelitis.  This caught me very off guard, but she felt adamant that's what I have.  It's a very rare neuroimmunological disorder, and when I went home that day and read about it I couldn't believe my eyes.  It was EXACTLY what I've been through, as if reading my own story.  So, this is scary but also anxious news.  Sadly, if TM is caught within the first 12 weeks the odds of reversing the paralysis are much better than post 12 weeks.I am now 6 months out from onset, so WELL past 12 weeks.  The upcoming week will hold a lot of new treatments, ideas, lots of neurology appointments, surgeries, etc.  Currently I am undergoing steroid infusion treatment, await IV Chemotherapy, back surgery to remove a medical implant so I can have an MRI and possibly several other treatments.  The odds of improvement aren't great, but I am willing to try what I can for any chance of improvement.  There is not a whole lot known about this disorder, so I certainly want to be one of the record-breakers and make improvements!

Again, I hate asking, but I'm out of other options. I have looked for state-wide and local grants, etc but they are all geared towards aging/elderly or children-based needs. I guess turning 30 is not a good time to become disabled. All I can say is thank you. Thank you for reading this and sending positivity my way. Good energy heals. My friends and family are amazing and I'm so blessed just to be here.  I have found my only option through all of this is to remain positive, that and my support system are what keep me going.

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