My struggle with Dysautonomia

So, as most of you already know I am a gamer, and I actually stream Destiny and enjoy streaming. but in light of dysautonomia awareness month I have decided to write a blog about dysautonomia and how it has effected me, as a gamer and a person.

  So, this blog isn't going to be as fun as the others but I have this on my mind and have decided to put it out there to help build awareness, and also to just get it out on paper. So, here is my story...

 First of all what is dysautonomia? (Dis-Auto -Know - Me - A) Well our body has several parts of the nervous system. Dysautonomia affects the autonomic or automatic nervous system. So we're talking heart, lungs, GI system, blood vessels... basically anything you don't think about using but your body requires to live. It is a malfunction of your autonomic nervous system. There are several types of dysautonomia (Dysautonomia is a umbrella term) There is POTS (Not the stuff you smoke) POTS stands for Postural Orthostatic Tachycardia Syndrome, AAG (Autoimune Autonomic Ganglionopathy) Autonomic Neuropathy, Panydysautonomia, Familial Dysautonomia, Pure Autonomic Failure and many more.

I used to have a full time job, actually at one point I had like 4 jobs, I was a manager at a box retail store, I was a sign language interpreter, a director for AWANA, and even a martial arts instructor. Next question is which art and what belt? Right? Well... Let's just say I had my own dojo and it was Kokoro Taijutsu, I also took Kenpo for several years.

2006, something started happening to me, and it was very wrong. I was having all these strange symptoms and I couldn't figure out what was going on with me. I continued to push myself because my family always taught me that you go to work unless your pooping or puking. So, I would show up to work and work a 80 hour week regardless of how crappy I was feeling. By this time I was just a Assistant manager at a retail box store. That was it, but I was still working 80 hours a week. I had gone through hell and back from 2003 on. watching my grandpa die, Witnessing a suicide, seeing someone being decapitated on the side of the road because of a really bad car accident. In 2006 not only was I diagnosed with dysautonomia but, my best friend was murdered in San Leandro, CA. 7 People injured and 2 people killed at a shooting spree at a local bar. So, did get it dysautonomia from trauma I suppose that could be the reason being I did go through a lot of emotional stress for several years, but I would later find it was much, much more.

 

Tilt Table Test 

 In 2007 I was still having a rapid heartbeat, uncontrollable tremors , and I lost a ton of weight for no reason what so ever. By this time I wasn't even doing martial arts anymore. I had been work a ton of hours managing the store, and to be honest with you burying myself into my work to avoid my emotions. I have never been a emotional person, and though by this time I had already been through hell and back I wasn't dealing with my friends murder well at all. I was having nightmares and was also having work related problems as well, my boss didn't believe I was really sick and thought I was exaggerating everything which obviously I was not. My local Doctor couldn't figure out how to get this illness under control so at that point he decided to send me to the Mayo Clinic in Rochester, MN. In fact by this time they had already decided to give me a pacemaker while I was in MN. Which they actually ended up not doing. I was only supposed to be at the Mayo clinic for about 7 days, however during my Tilt table test my blood pressure dropped down to 64/0 my heart rate jumped up and all I remember after of 7 min standing was "We're loosing her". The Mayo Clinic decided to keep me a few more days to run more test on me. I had to call in to work, and by the end of the visit, it had been conformed that I did in fact did have dysautonomia. That moment my life changed forever. I would return back to work with a confirmed diagnoses and from there would try to lead a life of a healthy person, while being so sick sometimes I wasn't even able to stand. I would constantly have to prove that my illness was legit and that I wasn't being lazy at work. I would continue to work 80 hours a week with the same expectations as when I was healthy with very little empathy from anyone. The fact was I looked healthy, I didn't look sick, and when people look healthy they are treated as if they are healthy. The illness is much deeper than appearance. Dysautonomia is actually compared to congestive heart failure. So, as you can probably imagine I wasn't feeling good at all. Everyday was a challenge.

Autonomic Nervous System

 Ok, fast forward to 2012, I am still working as an Assistant manager, same store, different managers, different people. I had kept a form about dysautonomia in my file cabinet so if something were to happen to me at work, someone could get the information to the EMT. Still I was not taken seriously by the majority of my co workers, mainly my bosses. I was still a "attention seeker" My symptoms were slowly getting worst. I had now lost my ability to sweat, was unable to eat but I was gaining weight. Like I seriously went 3 Months without solid food. and was still working 80 hour weeks. Like no lie, I would sometimes pray that I would pass out at work so that I would be believed, and get the medical help I needed. The Doctors knew I had dysautonomia it had been confirmed by several Doctors at this point. Treatment, not really known, and it was still believed that I would grow out of it. Then I started getting so sick, couldn't keep the little bit of food down, started feeling strange sensations that I can't even explain. I then made a decision from there to go to Stanford Hospital where they had a autonomic center. Doctors who actually specialized in Dysautonomia, who actually had answers.

 While I was at Stanford I found out that not only did I have Dysautonomia I also had gastroparesis which was caused by dysautonomia. It makes sense being that Dysautonomia is basically every organ can malfunction at anytime. So basically gastroparesis is a paralyzed stomach and digestive system. My body doesn't digest food like a normal person. It has a extremely slow delayed empty. So, what is gastroparesis like? Well remember the last time you had food poisoning, or even the stomach flu. It basically feels like that, except it doesn't go away. It may reside for a little while but in the back of your mind you know that it will be back, you just don't know when. Fortunately, I am overweight and my gastroparesis is not severe. I am able to eat, sometimes it's painful to eat, and sometimes I have severe consequences of eating but I don't have a feeding tube, and I'm not worried about losing to much weight because with me, I gained weight with the dysautonomia and gastroparesis. Most people lose weight, and they are accused of eating disorders because they are so thin. The fact is they want to eat, they miss solid foods. They just can't so they are stuck with lot's of hospital visits, feeding tubes and many other things that are just unpleasant.  Now with gastroparesis you are at risk of having bowl blockages because your food isn't digesting. As unpleasant as it is to talk about these things I want you to just imagine. Having to poop, and finding the food you ate still whole, undigested in your poop. We're talking meats, veggies, fruits... Well because we don't digest those foods properly, we get constipated and well sometimes it will cause a blockage which can be life threating. It's very unpleasent and many people with Dysautonomia such as myself also have gastroparesis.

   Stanford ran more autonomic testing on me and found that my dysautonomia had worsen since my 2007 test at the Mayo clinic. By this time I was taken trips to Stanford every 6 Months and had been pulled out of work several times, because my symptoms were just to much to ignore. On Daily basis, I was constantly nauseas, couldn't keep anything down, dehydrated, had light and noise sensitivity, anxiety, my left eye wasn't dialating or constricting normally it was sluggish. I was turning blue, like dark blue especially my hands. My hands were ice cold like I've been in the freezer and then all of sudden they would turn bright bright red, and be burning hot and swollen. Which would eventually even spread to my face. I couldn't eat without being close to a bathroom, I was always dizzy, had tachycardia (A really fast heart rate) really low blood pressure, couldn't concentrate , couldn't sleep, always felt as if I was going to pass out at any moment, was short of breath, even at times had a hard time swallowing. I was always cold in fact I couldn't differentiate the temperature, in fact I lost the ability to sweat. It could be 100 degrees outside and I wouldn't be able to feel the heat nor could I sweat. So I would literally have to drench my clothes in water to cool down. I had major blood pooling one leg would be pale white, the other dark red.  The joke between my friends and I were I was so patriotic that I turned red, white, and blue all in 10 min. The strangest symptom of all was nerve damage in my tongue. Yeah, so it feels like I drank a hot cup of coffee and burned my tongue except that pain doesn't go away. Sometimes it actually intensifies. The Doctor decided that I did not just have POTS as he originally thought, and that it wasn't something I was going to grow out of. In fact, it was of autoimmune etiology. (By the way though I was on several leave of absences I was still working over 50 hours a week as a manager) This was the turning point for me. The disease had gotten so bad that not only did I always feel horrible but I was told that I should consider getting a scooter to help me get around. They ran some blood test on me and found out that my Neuroneoplastic numbers were high and they feared that I had a disease called Amylodosis. Amyloidosis is a rare disease, and it's fatal if not caught soon enough. It is in the same category as lymphoma. The average prognosis is about 10 years and it is a very painful death. The few survivors have to go through organ transplants, chemo therapy, bone borrow transplants. It's a nasty, nasty disease. So, within a few Months I went back to Stanford to run test to see if this was the cause of the dysautonomia.


   I will never forget I was at work, already having a bad day not feeling well at all. I receive this phone call from Stanford. I stepped into a office where I knew for a fact I wouldn't be interrupted when taking the call. I kept the lights off so nobody even knew I was in there. It was around 7pm and it was the Neurologist. he said "I believe you have amyloidosis, you need to make an appointment with the amyloidosis center and if you want to quit work I will sign you off." My heart sunk... I was at work in a office alone, and I was just told I'm dying...The strange thing is at that moment your not scared so much, your worried about your family, your friends, how your going to tell people. I remember asking myself if I was going to let my co workers know. I mean the whole management team knew I was sick but my people (The majority of them) Did not know.  I was taught as a leader you don't show weakness, and being sick, well that is obviously a weakness so it had always kind of been need to know basis. What do I tell them? What do I tell my parents? Do I quit my job or keep going? Should I right my will and get all that in order so that my family would be taken care of? Who's going to take care of my dog? I was numb and in shock, and while all this is running through my head I'm being called to several areas of the store. Instead I chose to ignore the calls and find my boss, I had to tell someone I had to say it out loud. I was shook up, bad and couldn't hid it like I was supposed to. That day sucked bad - Nothing like looking death in the face, and being forced to fight the fear of death while everyone is coming to you about their problems. After I talked to my boss I shook it off and acted like nothing happened and finished my shift came home and broke the news to my family. Hardest thing I have ever had to do.

    I made a appointment with the amyloidosis center at Stanford, and was told that it was a misdiagnosis, but my neurologist was certain I had it. So, I went through the testing again. This time I waited 3 Months for the test results. So for 4-5 Months I thought I was dying and I continued to work around 50 hours a week. I had slowed down a bit, after finding out that my disease was progressing. About this time it was around Christmas, and let me tell you. When your a manager and your in retail during Christmas season; well it's not easy to begin with, you throw in the fact that you only have 10 years to live which remains in the back of your mind always it's nearly impossible to stay positive and put on a good front. Somehow I held my composure through all of this, there were a few times I wasn't the nicest manager, I was smart mouth, and I made mistakes but under the circumstances I kept it together.. In November I finally got the phone call I was waiting for, it was a misdiagnosis, a major scare, I didn't have amylodosis but I still had autoimmune dysautonomia. The dysautonomia was still progressing but the good news was I wasn't going to die from amyloidosis so I wouldn't have to under go Organ transplants, or even a bone barrow transplant.

 I continued to work, I was under going IV fluids weekly at the local hospital, I had changed up my medications. I still felt horrible, my tongue was still burning. In Fact the nerve damage was spreading to my face. I was having stroke like symptoms that were scary. But I had learned to live with it, my ability to stand was lessoning but I continued to fight through this everyday all day. I made a personal decision not to tell the store what was going on with me. I did however tell my bosses so that they understood why I was so stand offish. But, at the time I didn't want to be treated any different, and I certainly didn't want a pity party. I would suck it up and fight to keep working for as long as my body would allow.

 April 2014 I got bronchitis, it was inventory so I worked through it by May 1, 2014 I was so sick that my doctor basically told me that I could continue to work and possibly die, or I can be taken out of work so I can get better. But it would be a long recovery. By Mid May I couldn't even sit, and I had to have a care taker because I was unable to take care of myself. At some points I even had to use a wheelchair to get around. May 1st was the last day I worked, I have not been able to return to work because of my dysautonomia, it is to severe to work. I can sit around 4 hours stand around 20 minutes on a good day.

 So, more or less I went from a successful manager with potential to a disabled gamer. I started gaming because it help keep my mind off of my problems. I've been a musician all my life but even music wasn't helping me escape my reality. My best friend bought me a Ps4 for Christmas to help with my adjustment of being a full time worker to being disabled and unable to work. This is when I got into Destiny. My Disease does not define me, but it has made me who I am. I look at life a lot differently because of the trials that I have gone through. I realize that everytime I go through rough times it will make me stronger at the end. I would have not been able to get through these hard times with out God, my family and my friends.  They have been my backbone, even my co workers who didn't know I was sick until I was instantly pulled out of work have been amazing and completely understanding about my situation. (Even though I didn't get the chance to say good bye)

  For about 4 Months I underwent IVIG treatments (Intravenous Immunoglobulin) Which is actually a blood product used to treat autoimmune disease. Where my progress was transient my numbers were not changing so I was taken off of the IVIG treatments. So currently I am undergoing a very mild chemotherapy. I'm exhausted most of the time, but I have notice when I don't do the treatment I do in fact feel worst than when I actually do take it.

 So, dysautonomia is a ugly disease, it steals your life from you, it forces you to face fears that you've never wanted to face, forces you to undergo lot's of painful, annoying test. Forces you to swollow your pride and ask for help. Forces you to give up your old like and accept your new normal. You become sensitive when you think people think your faking your illness, because you've been accused of it so many times because it is a invisible illness. But I am here to tell you... This is real, it's not fake, people like me do fight these diseases. We don't expect you to understand, heck most doctors don't understand. We just want your friendship, your love, and we want to be treated normally. Trust me when I say it is depressing to go from being young and active to disabled, and having a body that is completely unpredictable.

 So, if I don't post for a while, or I don't stream for a while, please know I have not given up on the stream and I do love talking to my viewers. The fact is sometimes it takes a lot of energy just to turn on the playstation and interact. So, if I'm not streaming like I haven't been this last week, it most likely because I am not feeling well. I do love my readers and viewers though. I'm gonna end this blog with a poem I wrote a while ago, hope you enjoy and thank you much for reading my blog!

You stole my life from Me 

I was once young and able

Did Martial Arts full of life and goals 

My life had become pretty stable 

You stole my life from me 

I am no longer free 

instead I am on my knees begging please let me be

I had my life planned out, and my goals set 

I hung out with my friends 

but who would have bet? 

You stole my life from me

I have no energy, and lost my ability

my friends have moved on, in fact I have more enemies 

I was young with a good career, everything was fine and clear

My future was sure to be full and pleasurable

I was motivated and ready to take on the world 

You stole my life from me 

What was my future is a faded dream 

a glimpse of what could have been

You stole my life from me 

My future is now a mystery 

I have no clue what is in store for me

This has become very scary 

I built my skills around my career

I worked on my expertise 

I focused on the things I would need to succeed

You stole my life from me

I’m not sure what I had in my head 

I should have planned instead 

Don’t put all your eggs in one basket my mom once said

You stole my life from me 

but one day I will be free 

I will succeed

and not allow you to defeat me 

Your just a diversion 

a stepping stone to my next chapter in life.

I will not allow you to steal my life from me!

Jennifer Barnard 2014