It’s not in my head. My P.O.T.S. diagnosis during Dysautonomia awareness month.

“Your test results show you have POTS, which I think was your suspicion. Well, you definitely have POTS, and I really think we can help you.”

I was shocked.
”What??” I thought as I sat in the hospital room, a smile growing on my face and tears welling up in my eyes. Did she really just say what I think she did?
Oh, how I wish I had that moment recorded. I would show it to all the doctors before that told me it was all in my head, to all the people that have said, “But you’re to young to be in so much pain…” When this first doctor left the room I couldn’t stop smiling! I sent a text to my amazing boyfriend, and my gorgeous best friend, who have both been indispensably calming my nerves for months, “I got the diagnosis!!! I’m going to cry today, I just know it…”, I called my mom who was out in the waiting room with my dad and little sister, and then proceeded to tell the rest of my siblings the news. Everyone was so happy that we finally had a huge piece of this puzzle figured out.

Though, after a while sitting in that waiting room alone the initial rush of it all started to wear off a bit.
14 years.
That is how long I have waited for this appointment. Now, obviously, this specific appointment was not even in my sights 14 years ago.
What I mean is this, next month I will be 20. Crazy right? That means that I can take my healthy years, multiply them by 2, and they are still less than the number of years that I have been sick.
See, around the age of 6 I got mono for the first time, headaches were soon to follow. Then, about this same time of year when I was just turning 8, I got mono again. By the age of 10 I was having my first MRI done because of my horrible headaches. That was the day I was diagnosed with migraines, and it was only the beginning. I have been developing symptoms ever since, so many that I have enough to fill a whole page… printed on both sides.

It was hard growing up as the sick kid, it’s awful how the comments people make effect a child that age. I remember most of these comments vividly. The first was after church Sunday morning, us kids were all waiting in our 15 passenger van outside of Piggly Wiggly, while mom and dad got some groceries. Everyone seemed to be talking and laughing so loud. I remember being curled up on one of the seats on the verge of tears as I asked “Could you quiet down? I have a migraine.” One of my sisters (whom I dearly love and know would never say anything like this now) replied, “You don’t have a migraine. Only old people get those, you’re just trying to get attention.”
That was just the first in a countless number of such comments, “Are you sure she isn’t just making it up?”, “You just don’t want to play with us because you’re lazy”, “You are just saying that it hurts because you don’t want to help.”
I was the 10 year old with dark circles under her eyes that tried so hard to keep up with her friends and siblings, and often couldn’t. I could never count how many times I have felt guilty over saying no to something I couldn’t do, or the nights I cried feeling like no one really believed me…
That is what my memories have been marked by. I measure years by when I was getting allergy shots, when I threw up anything I ate with dairy in it (so in my house, pretty much every meal), when I was told I had hypoglycemia, the year I lost almost 40 pounds and became malnourished because of all the things cut out of my diet (eating at camp was a nightmare), the first time I passed out, the time I had to quit my first non-camp related job due to brain inflammation, the spring that I had to drop out of college (after only a month) because of a systemic candida infection, or deciding this year to give up my RedCross Life-Guard certification (a major part of my identity since I was little).

I was trying not to let these thoughts take away the moment, I wanted to cherish it as best I could, and at least hold on to that initial happy feeling until I talked to my family in the waiting room.
The doctor came in and told me what the plan was, beta-blockers, plenty of salt and fluids, and an exercise regiment. I am still skeptical about the beta-blockers as I have never had a good track record with pharmaceutical medicines. I react much better to natural sources. I’m not one to knock it ‘till I’ve tried it though, especially with something that could possibly effect my life for the better. So, I told them I was willing to try it. She then sent me off to the lab for some blood work.

I sent a text to mom telling her where I was so she could come find me. Finally, the face of someone I love! I got a great big hug and explained to her what the doctor had to say. I had my blood drawn by the quickest nurse in the south (seriously, mom didn’t even see her switch the vials!), and then we were off to get dad and Katrina.
It was then that I realized I wasn’t the only one with mixed feelings, as dad said, “So I guess you got good news and bad news today.”
He was definitely right. His little girl is more than likely never getting better.

You see, Postural Orthostatic Tachycardia Syndrome has no cure. It effects everyone that has it differently, causing different symptoms, severity, and quality of life (POTS patients have about the same quality of life day to day as those with congestive heart failure). Some are able to manage it very well with lifestyle changes and the help of good doctors, and others have to use wheelchairs or are bed-bound. Many people, like myself, go back and forth between those examples. This is a crazy syndrome. Not rare at all, yet so few people have even heard of it. I hadn’t even heard of it until last year, and I’ve had it for most of my life! The lack of knowledge makes this life so hard for those of us with POTS. Many of us are insulted for using wheelchairs or handicap parking because we can still walk sometimes, most of us are believed to be exaggerating by someone, and a heart-breaking amount of people walk out on us because they can’t handle it.

Well, October is Dysautonomia awareness month. POTS is under the “umbrella” of dysautonomia. It is a type of autonomic dysfunction, meaning that the functions your body controls, without you thinking about it, don’t work properly. I urge you to take the time to watch the video in the link below, and read from the websites in the other links. This is something that has stolen the lives of so many people, of all ages, and we need a cure!!!
Turquoise is the color for POTS awareness, I would love it if you would also join us in raising awareness by sporting your turquoise this month!!! Also, you can help as you shop by using Amazon smile and choosing to support dysautonomia international!

Thank you for sticking with me through this, I hope to write many more posts about the effect this syndrome has had, and will have on my life and the lives of so many others.

Peace, Love, and Spoons,

~Christina Ann

Video describing POTS:
https://vimeo.com/187404694

The most helpful website I found in my research:
http://www.potsuk.org

Help fund a cure as you shop:
www.smile.amazon.com

If this sickness takes one more thing from me, I will cease to be the person I so long to be.

If this sickness takes one more thing from me, it seems I will have nothing left. Any semblance of a normal life will disappear and I will cease to be the person I so long to be.

A hard truth, but one I’m finding I have to face… There’s only so much a person can bear alone, and as much as it pains me to admit it, I have a hard time relying on everyone else for help. And those I do rely on are being crushed by the burden of my pain. I find myself alone, crying my eyes out, my soul pouring out into a stain on my pillow case. “How am I supposed to go on this way?” seems to be the theme song of my life. It’s not the one I would pick if I had the choice.

There are days when it seems that if I have one more wave of nausea, if I have to even look at another piece of food, move one more burning muscle, pick up one more thing with my aching hands, or smile through another headache that I will cease to function. If I am completely honest, that seems like a tempting idea at times.

When every time you go to the doctor you find that three new things have come up and one old one has come back, it gets hard not to just throw your hands up and say, “I QUIT!” You get so tired of having to find food that you are allowed to eat AND won’t make you feel sick. You get tired of waiting on doctors to tell you that after they did all their tests they found that… Well, they don’t have any clue what to do with you. So you get sent off to the next one in hopes that this time will be the one. That this time you will come home having your hope, and the hope of so many others, fulfilled! What an amazing feeling that would be!! Not only to know what it is that makes my body fight itself constantly, but to actually be able to FIX it!!!

What a strange idea to be able to wake up and go to work, to enjoy a day at the lake, or go for a run…

If I woke up in a healthy body that’s just what I’d do. I would run. I would kick off my shoes and run just as far as my legs would take me, shedding off every hour of every year that has kept my body entrapped in this downward spiral.  Just the thought of being able to be so free makes my heart yearn for that day in a way that only the deepest of desires can.   I feel my heart may just burst out of my chest, and I cry. I cry because I don’t know what to do to bring this day closer to reality.

A day when the people I love can stop bearing so much hurt from watching me suffer for so long. A day when the happiness we feel won’t always be tainted by this sickness that has a hold of me. A day when my body will be able to keep up with my spirit. When my passions won’t have to be bottled up inside because I can go and live them! When I can help the people in this world without then facing the wrath of my illness. What an amazing day that would be.
What an amazing day that will be.

I cannot stop fighting, for the fight is keeping me alive.
I cannot give another fake reply, for the truth is all I have to give.
I cannot go alone, for the burned is too much to carry.
I cannot hide for one more day, for my heart is much to heavy.
But what I can do, I will.
I will shine love into a world that I have faced far too much darkness in.
I will share my struggles so no one ever feels alone, as I have.
I will not give up, so that maybe one more person will decide to keep on fighting.
I will ask you for your help, because I am far to weak.

My heart is laid out before you,
I am here.
-Christina Lewis