Type 2

     "I'm going to throw up" I mumbled to the MA who had just finished drawing my blood. It wasn't a threat, more of a hope that the nausea that had hit was a pre-symptom of puking rather than the more ominous alternative that I knew was a possibility. My vision blurred but I was aware of the grey bottom of the garbage bin that had just been thrust into my lap. For a second I noticed how the liner bunched at the bottom to make a kind of star formation. Ringing. Blackness. And then nothing existed at all.

     To back up I pass out a lot, around 8 times a day. But there are two different types of fainting for me. Type 1, I am very used to and have become less afraid of. It can be set of by lots of things; dehydration, standing more than my allotted 5 minutes, eating (any kind of food), ect. When it happens, I lose control of my body and I slump down, can't open my eyes or move but for some reason I can still hear and am somewhat aware of my surroundings. I'm stuck in my own body, unable to escape until it ends. You'd think this would be my own personal hell, right? Especially given that being trapped in my body unable to open my eyes is my worst fear. Well after its happened a few hundred times you get used to it. The fear diminishes because you have to deal with it because that's what you've been dealt. Type 2 on the other hand is quite difficult for me. It has probably only happened several times in my life and has always involved needles. Don't presume it comes as a fear of needles, I get tests done so often that I know the prick doesn't hurt, and the draw will soon be over. But still type 2 comes and I don't always see it coming. 

     After the deafening ringing in my ears and everything goes black, there's not even nothingness. Nothing exists. Mankind doesn't exist, life doesn't exist, I don't exist.  And then for no reason at all I'm in a dream, but I don't know what a dream is because to my knowledge I just started my existence 2 seconds ago. The dream always has to do with movement, the first time I was lying on a skateboard on my back that was careening out of control, other times its been vehicles of some sort, but always chaos and movement.  This time I was strapped into a lime green roller coaster sitting acrossed from some middle-aged women all wearing matching pink t-shirts who were screaming that the ride had malfunctioned and we were all about to plummet to our deaths. I have no explanation for this scene that I was sure I was experiencing but it may explain my strong dislike and fear of roller coasters. As the women wailed the strap holding me in tightened and started to crush my ribs. I tried to draw breath but my lungs burned and my chest felt as if a boulder had pinned me against the seat. The women's howls turned to ringing and the coaster blurred into white walls. There was a woman standing in front of me. Something told me I knew her, but up until a few seconds ago nothing had existed so who was she, what was she? And while we're at it what was I? Human. And she is my mother. It seemed that the realizations took years to come to but looking back it was milliseconds. After what felt like forever I felt my sunken chest fill with air as I heard a loud gasping that I could only assume was coming from me. I kept panting as I tuned into what my mother was saying, I can't remember it now but I focused all of me on following her direction. I vaguely remembered where I was and what had happen. The MA was propping my feet up when a nurse came in and yelled at me. Why did they always yell and demand I talk? I was still struggling to breathe and all these people were still greyish white and other off colors in my blurry vision. Mom began to explain what happened and I tried not to hear because terror had taken hold of my body and I didn't know if I could fight to stay in it. I watched as Mom talked without moving her eyes from my face. I saw something in her eyes that my mind told me was fear but I could not quite process that with the nurse yelling. She said that her name was Cookie and wasn't that an odd name and can I say her name back to her. It took everything I had to repeat the word just so she would stop. I know she meant well and was just doing her job but even now just remembering it makes me so irritated. 

     They wheeled me out of the room into a room with a bed and a mirror. In the mirror I saw an ash colored face with dazed eyes and absolutely no sign of life in her. I slowly and horrifyingly realized that I was looking at me.

     Over the next couple hours life came back into me but my memory was terrible and I felt confused. Somewhere along the line my mom told me I had stopped breathing for the minute or so that I was unconscious. That had never happened before. 

     The next few day I felt like a head trauma patient. For an entire day, maybe two, I kept having to remind myself that I was not 17 and it was not 2011 like my brain was telling me. Four years of memories were there but when I recalled them it was like I was remembering something that a friend had done or something someone had told me had happened. It did not feel like I was recalling memories of my own life experiences. 

     And then there was the oddity that when I came to I forgot I had siblings, when I got around to remembering them I only remembered half. I did eventually recall my other siblings 20 minutes later but it was still highly concerning for me to forget the people I love most dearly.

     The whole thing was quite terrifying, but I finally feel back to myself.  My 21 year old self that remembers and doesn't have to remind herself of the year.  When I woke up and felt normal I breathed a huge sigh of relief.  The worst of it was over.

Mayo Clinic

     I had originally thought that I would write a short paragraph for each day I was in Arizona describing the events of the day, leading up to the last and final appointment where I would have an all encompassing diagnoses and plan for how to fix it.  In my mind where I like everything to be organized and for stories to have a start and a finish, it made sense.  But my trip down to the Mayo Clinic is not a story, nor is it something that even had a definite start so the “end” would not likely be instantaneous either. Also having ended up being there for almost a month it would make for a lengthy story if each day were allotted a few paragraphs.
     With the fainting taking over my every decision my world became very small.  Before I did anything I had to think of every possible way it could go wrong. Could I stand and walk to the bathroom without asking mom to sit outside the door just in case I passed out?  Was it worth it to eat my favorite Chick-Fil-A salad if the price tag was 15 minutes of unconsciousness and an hour of stomach seizures?  Should I let the well-meaning friend come over to visit even at the risk that they may see me black out?  It’s been 30 minutes, have I been sitting up right too long?  Even with over thinking every action I could not possibly avoid the 5-12 episodes of fainting a day.  Which is the reason I ended up at the Mayo Clinic in Arizona for 3 ½ weeks. 
     The initial appointment went really well, and for the first time in years no one wanted to evaluate me from a psychology standpoint.  After that it was slow going.  We had to wait for more than three days for the insurance to approve all the tests and other consultations that the first doctor wanted to do.  To add to that it was November and according to the scheduling department it was their “busy season”.  Who knew a clinic/hospital had a busy season?  They told me it was all the snowbirds escaping to Arizona’s warm climate for the winter.  That made more sense when I saw the waiting room and realized I was the one patient under the age of 65.  So while the other patients were collecting their retirement I had to wait.  And wait.  And wait.  Finally things were approved and we got started.  They did lots of tests, looking for things I’d never heard of.  Some were painless and others ranged from uncomfortable to highly unpleasant.  As I got the tests done we were able to check the results on my online record and as always everything was coming back normal.  The consultations were mostly non eventful, with the doctors acknowledging that I had a problem but it didn't fit into their very specific set of expertise.
    I found that every other day I would break down and think “I can’t do this and plus it’s not worth it, they never find anything!”.  Through a roller coaster of hope and disappointment they did find something, P.O.T.S. (Postural Orthostatic Tachycardia Syndrome).  If you Google that Wikipedia will tell you that you can get it from getting a virus as a child or having rapid growth as a pre-teen/teenager and that if it’s the latter you may grow out of it in your early 20’s.  Before you get excited, for me its not the second one seeing as the first episode started at around 18 months.  I don’t know if it was from a virus either actually.  P.O.T.S. falls under an umbrella of syndromes that can be connected with Dysautonomia, in short that means that your autonomic nervous system doesn't function correctly and the symptoms can present themselves in many different ways for different patients.  I haven’t been diagnosed with Dysautonomia officially but it’s something that is on the table for discussion when we see the Neurologist that specializes in that sort of stuff when we revisit in April.  It was a bummer that we weren't able to get in with that doctor while we were there but we had already missed Thanksgiving and I was not about to miss Christmas too.
     After the P.O.T.S. diagnose the doctors were still wanting to look for more because it doesn't explain all of my symptoms.  P.O.T.S. patients don’t often pass out when lying down, actually they never do.  The main symptom with P.O.T.S. is passing out when standing, either too quickly or just standing too long.  “Too long” can be defined differently for each case but in mine, I've only got about 5 minutes maximum until I’m passed out.  The reason for this is that when I stand up my heart rate jumps from a normal pace to 50+ beats faster within seconds.  My body does this to compensate for the blood flow change that takes place when going from a sitting to standing position. Everyone’s body does that to some extent but mine is over compensating which results in a black out.
     I also had some results come back from a test that confirms that my body metabolize some types of prescription medication incorrectly.  This can be quite dangerous if I take certain kinds of medications even in small doses, the drug can build up and become a toxic dose because my body isn't breaking it down fast enough.  Because of this a medication to help the the P.O.T.S. hasn't been picked yet but is something to be decided.
     This new information left me a little confused as to what I could do to make myself more functional.  I started working on meditation with my wonderful hosts that were so amazing to take us in for two weeks.  The Hammons' (my aunt's in-laws) let us stay at their Arizona home and as if that weren't enough, Dan helped me learn how to meditate and helped release pressure points with myofacial release, a type of massage therapy.  He instructed me to envision warmth coming into my abdomen to help with the stomach seizures and was surprised to feel a strong pulse come immediately to my abs.  He figured that if I could consciously control my blood flow I could redirect my blood to my head when I felt faint and light headed.  I have been practicing this and have found that I can keep myself from passing out as much.  It takes a lot of consideration and time but I realised that I'd been doing it all along.  I had staved off unconsciousness several times before but I hadn't figured out how I'd stayed awake as long as I did.  Unbeknownst to me, while my peers were attending high school, graduating, going off to college, getting married and having babies, I had been perfecting the art of staying alive by influencing something that should be completely automatic.    

The Good, The Bad and The Ugly

The Good:  When you have a chronic condition or your level of function is diminished good days are few and far between, but when you do have one you may, like me, have a tendency to over do it.  It has been weeks, even months, since I have been able to feel like I've accomplished anything of worth in a day, until about a week ago.  On Halloween both of my parents were at work and my younger siblings (18 year old sister and a 13 year old brother) had the day off of school due to parent teacher conferences.  I wanted my mom to come home to a clean house after her long day of work.  I have the desire to clean the house almost every day but my body hasn't let me.  I love to clean, it's soothing for me, it helps me distress and feel like at least there is something in my life that I can organize.  So on this Halloween day I felt that same desire to clean but this time I was feeling at least up to delegating chores to my siblings and cleaning the kitchen myself.  I made a list of jobs and even though I wasn't able to finish all of them and also passed out several times during the day, I felt accomplished.  I felt good, happy, useful and most of all hopeful that things were looking up.  I even curled my hair and put on make up!

The Bad:  So along with the high of having a good day there is the inevitable crash when things go back to "normal".  November 1st was that day.  I had had a day to feel semi functional and then it was taken away from me as I had worked myself too hard and tired myself out the day before.  Tears followed after trying to do the simplest of things, almost as if the hope of yesterday was torn out of my hands and replaced with reality.  On these days I find myself almost giving up.  Not so much giving up on life, but giving up on that day, along with a promise to myself to try again tomorrow.  Some days I lose the will to fight the never ending storm of trials that awaits me when I wake in the morning.  I tier of the fight and for that one day I lose the battle, but not the war.

The Ugly:  Another thing I've been dealing with this month is not feeling pretty.  Its hard to feel pretty when wear yoga pants and t-shirts with no make up everyday.  I know what you're thinking, just wear something else and put on make up.  The solution may not be that simple.  When you look in the mirror you expect to see a certain image of yourself but the reflection that looks back at me is almost a stranger.  She looks sad; with her darken circles around her eyes, and skin pale and yellowish instead of the olive color it used to be, and the complete lack of muscle from her body from not being able to run or work out.

     I've grown more accustom to this new version of myself, but I don't plan on getting used to it.  Today I'm not giving up.  I'm fighting for my right to having some quality of life.  I'm fighting for a future me that can clean, work, run and do whatever else I find out that I like to do.  That being said, I've struggled to come to a place where I know that I can not fix this alone and I may just have to let it be for now.  Its an overwhelming thought sometimes, but thats when I can turn to the lyrics of The Beatles and know that "there will be an answer, let it be".

Let It Be by The Beatles

Cover by Michelle Cutler

ER Visit

I don't often like to share negative experiences, especially about my health, on forms of social media.  But today I had a more uplifting take on an ER visit I had had yesterday and wanted to share it through a picture I took of my ring I wear always that is engraved with the word HOPE on it.  I had gone to the ER after finally giving into my mother pleading with me to go because of all the fainting I was experiencing daily (8 to 10 times to be more precise).  I have a very hard time being willing to seek medical care because of how many times over the course of the last ten years that I have turned to doctors for help and been told to go home because it's all in my head.  Being told that you're making something up that is so painful and debilitating to your life is hard to hear over and over again.  For many years I have told myself that if I act like a normal person, do the things a normal person my age would do, like get a job and go to school, that I would in turn be normal.  But the truth of the matter is I am not normal.  I never have been.  All through grade school, middle school and the majority in high school I was chronically ill, missing months at a time up until my senior year when they finally got tired of it and kicked me out.  I did graduate high school, but I missed out on so many things that kids get to do.  Sometimes I wonder if my social skills are up to par with everyone else's.  Am I no better at socializing then a home schooled kid (no offense to anyone who home schools their children)?  I wonder if I'm coming off as awkward as I feel or if everyone is as insecure as I am.  I wonder what it would have been like to go to prom and actually attend school with my friends.  There are so many things I think I've missed out on in the last decade of my life and it makes me wonder what it would feel like to run and not pass out; to go hiking and not faint; to go out to eat at a restaurant and not get sick.  Is that what it feels like to be normal?  And when I truly think about it, I don't want to be “normal”.  Yes I want to be healthy and do all those things, but I have learned a lot that I wouldn't have learned in a classroom anywhere.  I do want to move on to the next chapter of my life and hopeful that chapter includes better health but more importantly I want it to be what God has planned out for me.  Which brings me back to the ER visit.  After sitting there all day, passing out at the start of the IV, after taking a gulp of juice, after standing up, and also for no reason at all, and then still being told to go home and just deal with it, I felt okay.  Yes it felt crummy to hear it again, plus the day had been long and miserable, filled with tests and migraines but I was okay because I have hope.  It was so relieving to know I still had hope that God would see me through another day, just as He has done every day, the good ones and especially the bad.  I thought I would share this message of hope with a picture of my ring on Facebook with the caption “After a discouraging and hard day at the ER yesterday, I slipped my rings back on and was reminded...there is always HOPE.  Hope that tomorrow is better and since today is yesterday's tomorrow I've already been proven right because today is better, I'm not in the ER with an IV and that's better enough for me:)”.  Underneath the caption was a picture of my ring on my finger in a photo I had edited to say “Never Loose Your HOPE”.  I shared this with my little circle of friends because I wanted to focus on the positive and not on the negative of that visit.  I wanted to remind myself by telling someone else.  I was surprised and very touched by the out pouring of love I received following the status update.  I had wondered if I should even share it because I don't like looking like I'm fishing for attention or coming off with a very “woe is me” attitude.  People were so sweet with their responses, wondering what they could do to help and did I need dinner to be brought to me and my family for a few days.  All of that also reminded me that not only am I not alone because I have God on my side, I'm not alone because people are generally loving, caring, good human beings willing to lend a hand or shoulder to cry on when one is needed.    

Marks of Imperfection

     In general, our eyes are used to observe and perceive, but not until recently have I become acutely aware of the fact that what our eyes take in may not be what is actually all there.  Let me further explain.  Since I can only speak for myself, that is just what I will do and therefore I'll also use myself as an example for my explanation.  
     When my eyes "observe" myself I see: wide hips, un-proportioned to my upper half, only intensified by my short stature; knocked knees and white stretch marks, from being heavyset during my middle school days.  I see a scar on my neck, from a hole I was born with, that many have taken for a hicky.  In profile, my nose has a distinct bump in it making it crooked and my facial features are very sharp, often coming off stern and angry.  I see short wide legs unfit to be seen in shorts.  I see imperfection.
     Why?  Why do I not see the other things?  The things I so dearly love about myself?  Through someone else's eyes I may observe: Long, healthy, soft to the touch, hair that requires little attention to be presentable for the day.  I may see striking, captivating eyes the colour of the blue sea framed by long black eyelashes.  I would see a ever so tiny waist, that could only be truly shown off by a specifically tailored dress.  I may venture to say that I would see beauty.
     What makes me this way you may ask?  Should I blame the kids in middle school who may have teased me or the boys who have said hurtful things in moments of thoughtlessness? Or should I blame society for giving girls an impossible standard for what is deemed beautiful?  No, the blame should be shifted to no one.  Though all of those things have played a part in the way I see myself, putting blame somewhere will not fix the way we (I guess I should say I because I said I could only speak for myself haha) perceive ourselves. 
     Maybe our marks of imperfection are what make us perfect in the grand scheme of things.  We are all perfectly imperfect.  And isn't that an equalizing thought?