Dear 16-yearold self,

Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?

Dear 16-year-old- me,

There's so much to tell you and so little time. I would write you this detailed letter but, from what I remember about being you, the odds of you believing this letter came from your future would be about zero.

So, here are some tidbits I'll share. Believe them or not, they're true and I hope that you'll at least keep them in the back of your mind as you go about your life.

1. Keep enjoying the little things.

Movies with your friends, working a part time job, homework, being in class, interacting with people, marching band. Even now, when I think back on it, the time you're living now was the best time of my life. Yes, there's the high school soul-sucking, gut-wrenching drama of boys and love and competing with other girls...but, from what I remember I (that is to say you) enjoyed it. I (you) enjoyed working in retail, you enjoyed frustrating challenges of homework, you went out with your friends and, for the most part, you were in your element.

My only suggestion would be this: Do more of it. Do more of all of it. Believe it or not, there will come a time where you are barely able to get out of bed. You won't be going to the movies, and your friends will desert you. Yes, even those BFFs you have right now, they won't be there. I'd warn you to not get attached but some pain is worth it. Enjoy them to the fullest now and accepting the pain later is much better than living half-assed. Enjoy it all now. Even running errands. You'll thank me later.

2. Never settle for less than what you deserve.

When it comes to your health, there will be many challenges ahead. Remember this: You're not crazy. It's not in your head. Find someone who will listen to you. Don't be shunted off to the side by your family doctor, or made to feel insane...you're not. There's something there. Find someone else to talk to. They will find it.

If you get to the point where they want you to have a colonoscopy (yeah, I know you're going 'wtf'.) When you get there, tell them no. Don't be bullied. Find Dr. M.S.

On a non health related note: There will be a choice that you have to make when you're 19. I don't think if I could go back in time and walk beside you, I could change your mind. But be prepared that it's coming, it will mean more to you than you think then, and will cause you pain forever. I'd tell you what it is, but knowing where you are at 16, you'd never believe me that it was coming anyways. Planting this seed hopefully will at least allow you to recognize the situation when it arises. All I'll ask of you is that you never settle for less than what you deserve. Demand what you want; don't just get screwed. If he's not willing to give that to you, let him leave. He's leaving either way.

3. Keep this in mind: There will come a time where you are diagnosed with POTS. Yes, it will happen. I don't expect you to believe me now, but keep this in mind. When you are, find Dr. S.B. immediately. Seek legal counsel as well. Immediately. It would have changed where we are now, at 24. (I'd recommend you not getting the vaccine that caused it, but I don't think I could stop that from happening even if I tried. The potential to not get cancer is so major a benefit and there's nothing in the literature you'll get to warn you of potential POTS. It was the right decision at the time, and I can't fix that. Just do as I suggest afterward.)

4. You know how you find it impossible to swallow pills? Find a way to get over it. Practice with M&Ms; swallow them whole. You're going to be swallowing a boatload of pills every day, so get used to it now.

5. Just for kicks, scare the hell out of everyone. Make the following predictions now, and look like a psychic when they come true:

a. You'll be diagnosed with POTS, Postural Orthostatic Tachycardia Syndrome in 2010.
b. Four years from now (when you're 20) you'll be dating the guy who sit next to in English senior year.
c. E's going to cheat and dump BJ in January 2006.
d. Barack Obama will be elected President in 2008. (Yes. The first black President happens in your lifetime. Place bets now; make millions.)
e. You are having an appendectomy on Feb. 4th, 2011.
f. Osama Bin Laden will be killed on May 2, 2011. (Place bets now.)

There are plenty more, but that should be enough to scare the hell out of anyone you tell. I only wish I could see the faces of everyone when they come true!

The reality is that you're going to have a really hard decade ahead of you. I wish I could make it easier for you, but I can't. I honestly don't know if I would because the person I am now (at 24) isn't as outgoing, or vibrant, or healthy and able to live like you are; but I like her and I don't want to rob you of the opportunity to become her. You've been a fighter and have been through a lot in your young life already, and I have no doubt that you will get through this too and you'll be a much better person for it.

One last thing: Thank you. Thank you for every memory you're making right now that helped me get through to 24.

~Erika

Keep calm...

Today's challenge was loads of fun! I love the 'keep calm' posters, and today's challenge was to create one of our own. Mine is about POTS awareness and advocating for the disease. The image (beautifully finalized by a friend from my rough idea) is to "Stop POTS" with the awareness ribbon I designed - a white ribbon with a red heart.

The best conversation I had last week...

The best conversation I had last week wasn't even a conversation; it was a compliment.

A friend of mind is in medical school and working towards her PhD. She sent me a message through facebook to tell me that she really admires my work to raise awareness for POTS. She also made a suggestion to me for how I can try to raise the profile for the disease a little bit through the medical community. In one of her classes, they have patients come in and give their perspectives on certain conditions and illnesses; so she suggested that I see if the medical school near me does something similar so I could talk to medical students about POTS.

Her support meant a lot to me. She didn't have to reach out and say something, but she did. She didn't have to make a suggestion to help, but she did.

I'm flattered and grateful!

I write about my health because...

There are a few reasons why I write about my health. In no particular order, they are:

1. It's an outlet. When I first fell ill almost four years ago, I was practically bedridden. I lost almost all of my friendships through the unpredictability and confining nature of POTS. I had an extremely difficult time connecting to my family and to any new potential friends I may have made. With no one to turn to about how I was feeling and struggling every day, I took to blogging. No one read my blog or responded there either, and I kept it as privatized as I could, but it helped to be able to vent out everything that was going on with me, my illness and how I was coping with it.

2. To disseminate information. On facebook, I try to share information about POTS in the hopes that those who are connected to my life will become more aware of what I'm dealing with. (A blind, foolish hope but a girl can dream, right?) I also post some information about the disease on my blog; whether it's specs about the condition, treatment options, where to find specialists, etc. Ignorance is not bliss for a chronically ill person. Information and research can, and often are, life saving. Knowledge is power.

3. To raise awareness. On one of the websites that I frequent, (a goal setting site), I started a goal for POTS awareness. I posted information about the disease, awareness efforts, news articles, and my own personal testimonial. I've yet to come in contact with someone else on the site who has POTS, but I was blessed enough to have about 15 people join me in my cause. That's 15 people without the disease willing to learn and care about it. If they told just one person about it, that's 30 people who know about POTS who didn't before. If all of them told another person...well, you get the idea.

4. To connect. Isolation is one of the hardest parts of my disease, so being able to reach out and try to connect with people who share my illness is wonderful. I joined the facebook groups of people with POTS and, as an experienced POTSie, I'm able to not only connect with people, I'm able to share my experiences and trials/errors with the newly diagnosed and their families. I was lost, scared and alone four years ago, and if I can help someone to not go through what I went through, I'm more than happy to do it.

Superpower Day

"If you had a superpower – what would it be? How would you use it?"

My answer to this question is probably just what you'd expect; I'd want to be able to heal. I would use this power not only for myself but for others as well.

It's almost impossible to watch a t.v. show or hear an interview with someone where a person is down on their luck and someone will inevitably say, "at least you/I've got my health".

What about those of us who don't have that luxury? Those of us who have to plan a week ahead for something a normal, healthy individual could do at the drop of a hat- if we can even do it at all?

If I had the power to heal, I wouldn't use it to just heal myself and others of chronic illnesses or disabilities; I would also use it to heal other illnesses like depression, anxiety, and phobias.

Imagine: a person who so badly wants to visit another country but who has a deathly fear of flying finally being able to make one of their dreams come true! Or a person who is allergic to sunlight finally being able to realize their dream of visiting a beach! How wonderful that would be!

Quotation Inspiration

“Find a quote that inspires you, positively or negatively, and write about it”

As I thought about this prompt, two quotes came to me right off the bat.

“Acceptance doesn’t mean resignation- it means understanding that something is what it is and that there’s got to be a way through it.” ~ Michael J. Fox

I borrowed this snippet from an interview with Michael J. Fox that was in our local news. Michael J. Fox is a very public face for his disease, Parkinson’s, as well as a fantastic actor.

I love this quote for two reasons.

The first reason is that I appreciate the thought that acceptance and resignation are two different ideas. So many times I’ve been told to “accept” my limitations, or have been preached to about acceptance as if it’s some dirty word; as if I should lie down and allow myself to be injured and put up with it. Accepting something doesn’t mean you resign yourself to it. I accept that the illness I have is Postural Orthostatic Tachycardia Syndrome. I take it in, and I know it to be true. However, I never once have resigned myself to living any less of a life than I want to because I’m ill. Knowing and being ill but getting on with it is a world of difference to having an illness and wasting your life wallowing in it.

The second reason I love it is that I like his viewpoint about dealing with his illness and living with it. There’s something almost calming about the way that he takes whatever comes into his life, whether it’s related to his illness or not, and looks at it, says ‘okay’ at face value, and figures out the next step. By accepting whatever it is, he’s putting his energy into finding something to improve his life rather than wasting it on self pity or ‘why me’s.

***

“Damaged people are dangerous, they know they can survive” ~ Josephine Hart

This is actually another of my favorite quotes and has been for years. While some people may find the word ‘damaged’ to be less than inspiring, I don’t take it to mean that there’s necessarily anything wrong with me- at least not in any less-worthy-of-respect-or-love kind of way.

For me, I guess there’s a literal connection to this quote. POTS is a form of dysautonomia; which means it’s a failure of the autonomic nervous system -a system in your body that controls every function. So, in a way, my body is technically damaged. I have a damaged system. However, I hesitate to use the term ‘damaged’ because there’s nothing wrong with me as a person. (But the merits of using the term ‘damaged’ is a discussion for a different day.)

As far as the quote goes, I find it to be absolutely true. I have gone through a lot in the last four years of dealing with my illness. Much more than most people my age.

I’ve had countless rounds of testing (some invasive, some not) and bloodwork. I’ve seen more doctors than most people see in their lifetime. I’ve fought battles with doctors and insurance companies and have used every penny that I have to try and recover the life I once had. I’ve had to change my career aims and leave college. I lost friends and became estranged from family members. I’ve gotten through serious health scares that most people three times my age haven’t. I fight every single day, and am still here; going strong when, by now, most people would have quit.

Thanks to my illness, I’ve become ‘dangerous’.

I’ve honed past survival skills and learned new ones. I’ve had to evolve much faster than most people my age. Along the way, I’ve learned valuable life lessons and for that I’m grateful.

Now, I appreciate things that most people take for granted, such as going to the grocery store, or being able to sit outside in the sun for an hour – which were almost impossible two years ago. I have learned (the hard way) that even those who have been your friend forever won’t always stay when the going gets tough; but that has taught me the value of real friendship. I’ve seen the crueler side of the humanity- where employers and colleges have denied me chances by telling me me that no one will want me because “no one wants damaged goods”; where doctors and drug companies are not held to any kind of responsibility for the damage that they cause – but that has made me more aware of the care I receive. I’ve had to explain to surgeons and hospitals what POTS is because they have no idea. It has encouraged me to do more research to advocate for myself because no one else is going to.

Through dealings with people, including family members, who are indifferent or intentionally ignorant, I’ve honed people skills and learned what I will, and won’t, tolerate from others. I’ve also learned who is healthy to have in my life and who isn’t.

I’ve been told I’ll probably be disabled, and faced the fear of clots and aneurysms and arterial blockages. I know what it’s like to be afraid to sleep at night because you worry about if you’ll wake up in the morning.

I’ve lost over and over again, but I appreciate the wins so much more than I used to. I’ve been humbled, but I’ve also found out what I can do. I’ve found my voice and a community that not only accepts me but will fight with me.

I’ve pushed hard and have gotten to a place that most people with my condition never do. I’ve learned to dream realistically, but still to push the bounds of what’s possible. I aim not just to survive but to thrive. As the Italian proverb says, “Only by aiming for the impossible, will we find the best possible.”

Though everything I’ve encountered over the years, I’ve gained valuable insights and skills that better equip me to deal with obstacles up ahead. In a way, I’m grateful to have learned them so young. Hopefully, they will help me to make better decisions and fewer mistakes.

I’ve also learned one important thing about myself: I’m made of stronger stuff than you’d think; and whatever the next challenge to crop up is, you can be damn sure that I’ll survive that too.

Health Time Capsule

"Pretend you're making a time capsule of you and your health focus that won't be opened until 2110. What's in it? What would people think of it when they found it?"

If I was making a time capsule about myself and POTS, I would approach it in four parts.

The first part would consist of things about me and my life. There wouldn't be anything intensely personal; just a small biography (the kind found on a book jacket) and a few photos of things that are important to me. I don't think that anyone who would dig up my time capsule after I'd passed on would be all that concerned about knowing every tiny aspect of my life, so I'd just provide enough information to put a face to the name of the person who created the capsule.

The second part would be entirely about POTS. I would put in information about the disease, research being done, treatment options, names of prominent POTS specialists and any kind of news coverage about POTS that I could find. I'd also be sure to include any important dates such as awareness weeks and the information for groups and individuals who are involved with POTS awareness and advocacy.

The third part, I would want to include are personal testimonials. I would videos and blog posts from/about those with POTS; as well as documentation/ stories about how POTS affects me and my life. I'd ask other POTSies to write about their triumphs over the disease, and achievement of goals in spite of their illness. I would probably ask family members and friends to write short testimonials about how it has affected them and their lives as well.

The last thing that I would want to include would be a small number of songs, videos and quotes for inspiration and support.

As to what people would think of it when they found it...

I honestly don't know what they'd think. What I would hope they would get out of it is a wealth of information about POTS, not just about the disease but about those people who are affected by it. I'd also hope that the message would not just be informational but also inspirational; that the accomplishments of the POTS community would last and might just help more people to stand up for our cause and bring it the recognition that it needs- which I hope will be much farther along one hundred years from now than it is today.