Updates...

It's been a long time since I've updated anything going on with me here. So little had changed for so long that I just lost interest in posting. After all, who wants to read the same thing just on a different day? Snooze.

Since my last post, several things have happened though.

For one, I went to the Cleveland Clinic. I've improved some on my current POTS treatments, but I really wasn't feeling how I wanted to feel. I was still struggling to get up in the morning, having difficulties with nausea and heat intolerance and a whole mess of other things. So, I decided to take my case to another doctor to get another opinion. (For the record: It's not that my doctor here hasn't been wonderful, because she has; I just wanted to know if there were other options out there that might be even better.)

So, in May, two weeks after my last post here, I traveled out of state to visit the CC. I went for two days and was put through a battery of testing. A QSART, hemodynamics, blood volume, heart rate variability, etc etc. 

To this day, ten weeks later, I still do not have all of my results; so there isn't too much to update on that front. Only when I get my results will the doctor synthesize all of the information and then come up with a new treatment plan for me. 

I went in May in the hopes of starting this new treatment plan long before now so that I would be in a better place to start graduate school in the fall and that's obviously not going to happen. It's frustrating to say the least; but I'm still trying to keep up the hope that it will be worth it once the results come in.

***

In other news, I was hired to a new job in June! They were very kind in accommodating my need to sit (they all sit anyways) and I was able to keep water and snacks with me at all times. It was also in an air conditioned setting so my POTS stayed (relatively) under control. I was lucky to land it. (Note to POTSies looking for work: Don't blurt it out in an interview. Stick to the professional aspect only. Once hired, they're required to make reasonable accommodations so bring it up then. Thankfully, for me my accommodations were more than reasonable....If you're like me and feel that's wrong, it isn't. Companies only want to know if you can do the job they'd be hiring you for. If you can, that's all they want to know so leave it at that.)

A couple of weeks ago, I received a call from my grad school offering me a job that would be a great career move and fit in with my course schedule so I took it! Yesterday was my last day at my other job and my coworkers and my boss were incredibly kind. They gave me hugs, bought me flowers and a card all wishing me well; and told me that I'm welcome back at any time. It was bittersweet to leave. 

While I was only there for about six weeks, I'm going to miss them. I hope I can stay in touch with a few of them. It was my first real interaction with people in a long, long time and I'm sad to see it come to an end.

***

Two weeks ago, my boyfriend and I took a day trip to the 1000 Islands for a family reunion of sorts. It was a long drive, and the heat was hard to tolerate but other than that it was fun.

Except for that one moment where some stranger came up to me and wanted to know why I was wearing compression stockings. She flat out asked me "What's wrong with you?" (Rude! Embarrassing! None of your business lady!)

I replied, as nicely as I could, that I had circulation troubles. Which, is true in a way. While it would have been a great awareness moment, POTS is far too complicated to explain in a brief amount of time to someone who doesn't know you or really care - not to mention that I was embarrassed in front of my whole family and about fifty strangers - so I just left it at that.

***

Other than that, there isn't much to share. I'm trying to exercise a couple of times a week, I work hard to keep myself as active as possible and I'm trying to venture out more often. (Although this heat is absolutely brutal for us POTSies!) 

I hope all of my fellow POTSies (and everyone else) are doing well ♥

You Rock!

I read a post by a fellow blogger today that I felt really needed to be shared with those who come across this blog.

The post is about all of the ways that people with dysautonomia rock just for doing what they do every day. It helped pep me up a bit, and definitely think it's worth mentioning in case someone else out there could use it too. (It will work for anyone with any kind of illness I think, especially dysautonomia but also CFS/ME and others.)

Living with Bob (Dysautonomia): You Rock!

Open a book.

Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today.

Sometimes, the Universe works in mysterious and funny ways. I’ve been rereading Harry Potter and the Half Blood Prince, so that’s the book that I grabbed for this exercise. My random page: 531.

Here is the random phrase that I pointed to (with my eyes closed):
“His lightheartedness was short-lived.”

I laughed right out loud. Gee, does that fit into me and POTS at all? Ha! It’s as if the Universe wanted to give me a giggle. Well done, Universe; well done.

I might even go so far as to say this pretty much sums up life with POTS. Once one hurdle has been cleared, the next is looming almost instantly. Finished showering? Great! Now good luck getting your clothes on and downstairs to eat breakfast. Finished that? Awesome! Now run to the store, but you’d better make it quick because the blood is constantly pooling in your legs and you probably only have about 20 minutes before you lose feeling in them! Let’s just say that the feeling of joy, accomplishment and sheer relief at having finished something is fleeting at best.

This phrase also is a good way to describe dreams, aspirations, goals, and anything else someone with POTS might want to do. Being asked to go out for coffee feels great. Who doesn’t love to be asked? But as soon as that “yes! I’d love to! I can’t wait!” feeling hits, the planning begins. Oh, I better eat only safe foods for two days prior. Oh, I better make sure I have my compression stockings on. I have to be extremely diligent about being in bed at least eight hours the night prior, and have to drink twice my normal amount of water to handle the coffee, and I have to make sure my meds are taken at precise times just to be safe. Not to mention having to take into account the POTS-induced allergies and food intolerances. Oh, and can’t forget the heat/cold intolerance too, so better be careful exactly what I wear and to anticipate any and all temperatures. The weather too. Can’t forget how the weather affects everything too. Those are just the steps on a good POTS day. On a bad one? Forget it.

Sound tiring? It is.

As if the condition itself isn’t a pain in the rear to deal with and try to control, the extra planning and aggravation that goes into being able to do anything is, at times, almost unbearable. Yet, saying ‘no’ makes me feel guilty or embarrassed, or just plain like crap. Talk about being between a rock and a hard place. It’s not like I, or anyone else with POTS, enjoy living like this.

This whole complicated system of routines, schedules and checks happens with everything. Any task or item you want to do or accomplish. Being asked to family dinners. Wanting to go to an attraction. Having the desire to plan a vacation. All of them feel fantastic and exhilarating when they’re an idea. I’m going to get out and do something! I am! But there’s so much work to do just to get to a 50-50 chance they can be possible.

One thing’s for sure when you live with POTS: the lightheartedness really is short-lived.

Learning the hard way.

What’s a lesson you learned the hard way?

There are several lessons that I’ve had to learn over the last few years; some are positive and some aren’t.

One of the hardest lessons for me to learn was that even those who say they’ll be there for you rarely live up to their promises. I had friends that I was with for years prior to POTS that I really thought would stick around, at least for a lot longer than they did. However, six months into what was then a mystery illness (I was undiagnosed for two years) people started to leave; claiming I was either faking by claiming to be so sick, or that I was too flaky because my ability to do something could change from hour to hour. I even had family members treat me the same way. It was a very painful thing to experience, having people you love, and who you thought loved you, leave. I was blessed to have a couple of friends who managed to slog it out, and a boyfriend who was in the trenches with me every day seeing what no one else saw- that I really was sick and that every day was a struggle.

Every lesson though, no matter how painful, can teach us something. For me, I learned to be more patient towards others just as I had hoped others would have been more patient with me and my illness. I also learned to reserve my trust for people who are more worthy. I used to just share my business with anyone who asked out of the hope that sharing a lot would make me closer friends; it doesn’t. I also learned that those rules apply to family members as well. Blood doesn’t mean everything. You have to make friends and have a relationship with a family member and can’t fall back on bloodlines to guarantee you friendship, kindness, support or protection because it doesn’t.

The second lesson that I learned was to slow down and appreciate little things. Being very ‘type A’, I was always multitasking or on the go or working on something. I took trips to the grocery store and going to the movies for granted because it never occurred to me that those activities would be too much for me at any point in time. They were a given. Once POTS came along, showering and dressing was a challenge, let alone running to the store for some milk. During the summer, I had to stay inside because my blood pressure couldn’t regulate enough to keep my body from overheating almost instantly. When I was in high school, I would spend hours out in the sun and the heat; sometimes full 8 hour days when I was in marching band; in August when it was 90 degrees out. With POTS, I could barely tolerate ten minutes outside and there was no chance of hitting the beach or sitting out on the deck.

I was forced to learn to love small victories like going to the grocery store or spending an hour outside gardening and each improvement in my health brings new victories. I was ecstatic the first time I could eat steak again, which was too difficult to digest with POTS before. I flew to Florida and survived with minimal symptoms. I went on a 4,000 mile road trip across the country this summer. Hell, I’m going back to grad school in the fall!

It’s taken a long, long time to get here (over three years) but I appreciate it so much more than I would have if I’d never gotten sick in the first place. It’s been proven that it takes three times as much energy for a POTS person as a normal person to do anything. It’s taught me that I have to pick my battles and decide what I really want. Save my energy to do the things that matter to me.

I still feel accomplished when I walk a mile, or manage to do all of the laundry in a single day because with POTS those everyday tasks, the ones that everyone takes for granted, aren’t taken for granted by me. Each one is a mini battle that I have to wage. Me vs. my body vs. my will vs. laundry/cleaning/etc. Every day is difficult; some worse than others. However, I’m glad that now I have the ability to appreciate winning each of those little wars and they spur me on to bigger and better things.

Today I completed a marathon...

One of the sites that I’ve come to adore (as a POTSie as well as a person!) is called 43things. It’s a goal-setting site that allows you to come up with a list of things you’d like to achieve. Each goal can be short or long term; heck it can be anything you want! As a goal is put on your list, you’re able to write entries on your progress. There’s also the ability to interact with others; which has been wonderful in the year(s) where I had little interaction with anyone due to illness. I’ve found it to be a great organizational, and motivational, tool. Check it out, it’s awesome!

A few of the people that I interact with are runners, hikers, and just generally very active people. (Perhaps opposites attract?) Several of them are 5K runners and marathon participants.

Now, the odds of me running a marathon are slim to none. Honestly, I’m okay with that. I’m not a runner (I never was) and it was just never something that I considered to be a ‘must do’ in my lifetime. My passions and dreams lay outside the world of running.

Still, it must be an incredible thing to accomplish. So, I decided to institute my own.

As most POTSies know, some days just getting out of bed feels like a marathon. Walking to the mailbox, or up a flight of stairs can be an exhausting travel. On my worst days, I’m pleased as punch when I can just shower and walk downstairs!

It’s taken three years of ‘training’ to be able to walk a mile with my dogs; how in the heck was I going to accomplish a marathon? So, I set myself an open time limit with the only stipulation being that I was going to walk a marathon’s distance of 26.22 miles.

Today, after several months of dedication, I completed that goal. Words can’t express how good it feels; especially after being more-or-less homebound two years ago.

With a lot of determination, and support from my 43things friends, I did it! Me!

A friend of mine through 43things (yes, you make great friends there) sent me a small package with a note of congratulations as well as a homemade runners bib and a finisher’s medal. I will display them with pride.

10 Things I Need the Most:

Write a list of the 10 things you need (or love) most.

Honestly, there are a lot of things I could live without, but these are the things that I prefer to have to make my life more enjoyable/livable:

1. My dogs. They are the lights of my life and I would be miserable and lonely without them.
2. The internet. I could live without it, but I enjoy having it. It allows me to connect with other people and make friends - POTSies and non-POTSies alike!
3. Notebook paper (and a writing utensil.) I'm a compulsive lister. I make lists all of the time about things I want to accomplish, need to do, have to ask doctors, important stats, etc. I also enjoy writing actual mail.
4. The postal system. Again, I love to send mail and packages to my family members and to friends.
   
5. Meds. The last thing I ever wanted was to be on medication. I hate it. I resent it. I tried everything to keep from being on it and that just wasn't possible. I've come to terms with more-or-less needing medication. I don't NEED it; I could be a vegetable somewhere...but I greatly appreciate having it because it allows me to lead a relatively normal life.
6. Compression stockings. Same reasons as above. They are ugly, and a pain in the neck to get on, and make me feel about a hundred years old. But, with them on, I feel human again and I'm able to function in ways that I had only craved for years. They're an ugly, embarrassing blessing.
7. My "Type A" personality. It's kept me going and fighting long after I wanted to. It's come up with new causes for me to lend my voice to, and has pushed me to join and start and take part in things I never would have without it.
   
8. My support system. Sometimes it feels like there's no one there, but even on my worst days I know there is at least one person that I can turn to.
   
9. Information. Knowledge is power. Period.
10. Bare necessities. I know that even though POTS isn't something I asked for, and that it's been difficult, so far I've been lucky enough (through family support) to have food to eat and somewhere to lay my head at night.
    

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