It's My Party, And I'll Cry If I Want To

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Lots has gone down since my last post, and I'll try to recount everything accurately for you (thanks, brain fog). This is the 4th time I'm attempting to write this post, and I WILL finish this one! Yesterday (Sunday) was the worst I've felt in quite a long time, and it also happened to be my birthday. POTS doesn't care. So hopefully I'll be able to do something cool today, in an effort to give POTS the middle finger. But in all likelihood, that will mean writing this post, giving the dog a bath, and *hopefully* taking a walk. Only time will tell. Here is the day-by-day, blow-by-blow account of the last 4 days:

Thursday: Thursday I had an appointment with a cardiologist (POTS, not pacemaker). However, it was not with the doctor who I normally see, because apparently my regular doctor was in Russia. As soon as I opened the appointment notice over a month ago and saw that it was with a different doctor, I became anxious. Most people with POTS/ Dysautonomia can tell you how stressful it is to see someone other than the doctor who treats you, simply because you sort of have to "rebuild" the whole patient/ physician relationship. You have to learn their personality, tell them everything that you've spent years on with the other doctor, and deal with a whole new perspective on your condition. It's stressful.
I know doctors can have "eccentric" personalities, and I'm usually a bit taken aback at some of their initial remarks. But I almost smacked this guy after the first 5 minutes. My mother was telling him something, and he had the nerve to interrupt her and say, "C-can you just wait? You're interrupting my train of thought." Who does that? A doctor once told me to be quiet because he wanted to talk to my mother and not me... needless to say, I am no longer in his care.
As the appointment progressed, we actually got on quite well, and I discovered that we share a very similar sense of humor. After he finished up the exam, he wanted to meet with me in the conference room. My stomach fell. Being asked into the conference room is never a good sign, but when he followed his request with "We need to have a long conversation," I almost freaked (internally, of course). But I managed to hold myself together until the end of our meeting. Basically, he told me that after 5 years, "I should be better, and need to have an external motivator to get better"... What the hell?? I almost lost it. I've met people who have been sick for MUCH longer than 5 years, and they've literally tried everything. Guess what?!? THEY'RE STILL SICK. Sure, maybe if I got POTS after a temporary thing like a viral illness or an injury, but as far as I can tell, I didn't have either of those things before becoming symptomatic. An external motivator? Oops, sorry. I thought following orders, trying to get back to school to become a physician, and desperately clinging to what semblance of a social life I have was motivation enough, but apparently not. And speaking of "not enough," he also had the nerve to tell me that the recumbent biking, yoga, and ab exercises I've been doing aren't "good enough." Why? Because I need to do at least 30 minutes of exercise everyday in an upright position... Uhh, NEWSFLASH!!  The entire effing definition of orthostatic intolerance, a hallmark of POTS, is that being upright causes fainting!! I had to learn that the hard way when, while DOING upright exercise like walking and running, I almost got hit by cars/ passed out in the road several times!!  I walk and/ or run whenever I am well enough to do so. And typically, after a week or so of feeling great and doing my exercise everyday, I will suddenly be unable to walk down the hall to the bathroom. If I've been attempting his special exercise program for 5 years and I'm still not better, I'm guessing POTS isn't going anywhere anytime soon.
He also recommended that I start seeing other specialists and told me to take salt tablets. I'm not planning on adding any more doctors to my list any time soon, so you can call me non-compliant in that regard. I've been told for a while now to do the salt tablets, but am very hesitant and can't find them ANYWHERE in the area. So maybe I'll take them, maybe not. Either way, I left his office in tears and in a rage. I felt like I was back to square one - dealing with a doctor who is blaming me for my problems, for still being sick. All I can say is, I better not be assigned to him again.

Precisely the reason why "upright exercise" and I don't jive anymore...

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Friday: Moped around the house, still angry with the doctor's verdict. I did attend a staff meeting for the theater I work at that evening, so at least I did something...

Saturday: THIRD ANNUAL CENTRAL VIRGINIA CONGENITAL HEART WALK!!!!!! I've been involved with the Congenital Heart Walks since they began in 2009, and have attended 5 so far. It's. My. Jam. I woke up at 3:30 am for it, and it was totally worth it. My childhood friend joined me, and I have to say, she worked her butt off helping us. I love this gal! Doctors, nurses, CHD survivors, parents of "heart kids" and angels, friends, and family all gathered to support Congenital Heart Defect research and awareness. Simply amazing! I even ran most of the "walk," so I consider it an all-around successful day. :)

Hangin' out with Snoopy and my amazing friend!

Some of the fantastic walkers

Sunday: My birthday was Sunday, but POTS didn't care. AT ALL. Literally everything hurt, including my skin. Going to church was a bit of an ordeal, and I spent the entire day trying not to throw up/ pass out. I have to say, I haven't felt that bad in quite a while. C'est la vie. Needless to say, the festivities are on hold.

This is what is known as "venous prominence." Basically, you're seeing  the veins popping out because all my blood is pooling in them... Happy Birthday to me!

*Phew*... This post took me 3 days to write... That's brain fog for ya. I'm sure I forgot to include some things. 

Thanks for checking in again! 

For all my POTSie friends, hope y'all are having a symptom-minimal day! 

It was my party, and I cried because I wanted to... and because everything hurt. 

- Sydney

Sick and Tired of Being Sick and Tired

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I am SO over this. It's been 5 years, and I am tired of this - excuse my French - shit! I've reached a point where every time I hear something along the lines of "Well you look good!", "POTS isn't a serious thing," "You'll grow out of it, right?" or "I'm tired of hearing about it," I have to restrain myself from getting physical. And I would like to reserve a few very special punches for the "medical professionals" who told me 5 years ago that "nothing was wrong;" that is was just "all in my head and to take some ibuprofen." I am mentally, physically, and emotionally exhausted. I never know when my symptoms are going to come around, or for that matter, WHICH symptoms! I go for days without sleeping more than 6 hours total (thank you, insomnia!), my digestive tract like to act up at the most inopportune times, my chest pain flares randomly, my chest bumps like shoes in a dryer, and now I can't even stand long enough to do my 4-hour shift at work. Thanks to the summer heat, compression stockings are out of the question, and the company I happen to work for refuses to let employees sit down during their shifts... EVEN FOR MEDICAL REASONS!!!! After finishing a particularly tiring and symptomatic shift, I explained the situation to my boss only to be met with "Well, maybe this isn't the right job for you." It was all I could do to hold the tears in until I left. It was like someone punched me in the gut. He might as well have told me this:

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It didn't help when my family told me to "get a real job," that I "don't need that job." Yeah, I would LOVE to get a real job! That's what I'm going to college for. Oh wait... that's right, I'M NOT IN COLLEGE BECAUSE MY BODY SUCKS. So in the meantime, I need a sub-par job to earn money to go back to school. And it's not like I really get to pick and choose which job I take because, in case you haven't noticed, our economy is in the crapper and this was the only job I got. So yes, I kind of DO need this job. 

My gluten free attempt is slipping, working out... what's that? I'm getting rid of my brain-mouth filter. I just don't give a shit. I'm sick and tired of being sick and tired. Say what you will about me, but as aforementioned... I DON'T CARE. Unless they are positive things, which I always appreciate and I may shower you with rainbows and puppies and cupcakes and glitter.  

So I'll be attempting to get through another paltry yet agonizing 4-hour shift tomorrow, then on Thursday I have cardiologist appointment #2 of the year (which should be interesting as my appointment notice lists a different doctor than I have been seeing...). Friday night I've got a staff meeting for work and I don't anticipate sleeping because I have to get up at 3, 3:30 am on Saturday for a Congenital Heart Walk!! Updates to follow...

Just a warning... 

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Thanks for checking in!

Sydney :)

For the Record, POTS Sucks.

*WARNING: Whiny post ahead; Proceed with caution*

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So, if I haven't made myself clear, POTS sucks. Dysautonomia sucks. Heart disease sucks. This post isn't going to win points for positive attitude, but I really couldn't care less. When you've be this sick for this long, it gets old and frustrating REALLY quickly. So here's my little tirade that I desperately need to get out of my system:

Before POTS came along, I was managing my congenital heart defect just fine. The only treatment needed was a pacemaker: I would go to the hospital for a pacemaker check once a year (unless is was replacement time), had phone checks every 3 months, and took no medications. I knew what was ok for my body and what wasn't. I had many respiratory issues when I was younger (bronchitis, croup, pneumonia, and pleurisy), but I always knew when to go to the emergency room. Now, thanks to POTS, things that would have sent me rushing to the hospital before are now normal. When new symptoms crop up, or a weird pain comes along, I usually wait it out until I'm writhing on the floor. And even then I try to wait it out. I haven't been to the ER in over 4 years, and I'm really thinking about going if my body doesn't shape up. I've had terrible insomnia for an entire week, and it happens frequently. My chest pain has been bad. I feel like there's nothing in my chest, or like I'm having an adrenaline rush, but my heart isn't racing and I'm just sitting down. I can't explain it. It happens a lot, but is a completely unique and disturbing sensation - how do you communicate effectively with the doctors if you can't even tell them what's going on? How are they going to understand your symptoms if you can't understand them yourself? My limbs are weak, I wake up with a pounding headache every morning, my heart races with the slightest movement. There is a constant ache around the liver area (and has been there since it became enlarged last year, but with no known cause). I can never seem to get a  full breath, and sometimes I catch myself barely breathing at all. And just a little while ago, this lovely stabbing pain in my left side showed up. 

I know I sound like your grandmother who's always complaining about her health, and I feel bad saying this, but I totally get where she's coming from. Except I'm not even 20 yet. And that's really depressing. What's even more depressing is knowing that there are probably going to be other health issues that arise down the road as a result of the ones I have already collected. Dilated cardiomyopathy (aka heart failure), for example, is associated with heart rhythm issues. Specifically, with congenital complete heart block. Well, I've got the heart block PLUS tachycardia with POTS. Most people with dilated cardiomyopathy eventually require a transplant. We don't even HAVE long-term prognosis data for POTS and Dysautonomia, as we are still struggling to get many medical professionals to accept it as a real illness! So I don't really care if I sound like Maxine from time-to-time. You probably would too. 

This is Maxine, my role model (Source)

On a somewhat unrelated note, I'm trying to go gluten-free. I've heard lots of success stories from chronically-ill people and I want to see if it helps. At this point I don't think I have much to loose. Except I might need to put this sign on my door:

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See? I can be funny and sick and frustrated and upset and confused at the same time. I hope that's normal.... ;)

Hope the rest of your week goes smoothly!

Sydney

You Make Me Smile :)

I have returned from my trip to Minnesota and am ready to go back. Here are a few reasons why:

- My best friend in the entire universe is there and I miss him immensely 

- It's hotter than Hades here and my air conditioner is broken 

- I miss my boyfriend 

- I'm kind of sick of being in Virginia/ West Virginia 

- I want to see my boyfriend again

Those are my main reasons. I experienced one of the best weeks of my life heretofore, and it's kind of a drag to be back to the normal, boring routine. I'm planning to go out again around Labor Day, but that is just too far away for my liking. 

We spent an amazing week together, complete with a birthday celebration, laughing-so-hard-you-pee-a-little game nights with friends, a double date, 2 trips to the Mall of America, a visit to the Science Museum of Minnesota, an improv show, some couple time in the park, many shenanigans, and much more. Needless to say, I'm feeling a bit deflated now. But like they say, "don't cry because it's over, smile because it happened."

Much to my surprise, my body was on its best behavior for the duration of the trip. Even the flight was tolerable. Now that I'm back, however, it has also decided to get back to "normalcy." That means insomnia from hell and pre-syncope on my first day at work yesterday. Pre-syncope is the term used in the medical community for "almost fainting," aka blurred/ tunnel vision, clammy skin, heart racing, shortness of breath, nausea, and everything else you experience right before a POTS faint. It's lovely. Really. Especially the part where you have to ask your boss for permission to leave after ONLY AN HOUR on your first day. And getting someone to come pick you up. Thank the Lord that I have loving family members who live close by and happened to be working from home that day! I should point out that the movie theater I now work at isn't even open and therefor does not have operational air conditioning yet, and they wanted me to come in an help clean, get the theater ready, etc. This poses a problem for heart patients, especially when the area is in the middle of a heat wave (it's in the upper 80s to low 90s). After explaining my situation, however, my manager was very understanding and wants me to wait to come in until the AC is working. 

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I downed almost 5 liters of fluid yesterday on my own. I should have gone to the hospital for IV fluids, but I prefer doing things for myself, dammit. I've already got a head start on the whole "Doctors make the worst patients" thing. 

Also, the AC in my home is now on the fritz, so I've resigned myself to the basement. It's a happenin' place. Thank the good Lord for Netflix, Facebook, and books! 

I've also been pretty optimistic about things, even when I feel like crap. I think it's a combination of more "good days," a great relationship with a wonderful guy, and the prevalence of sunshine. Oh, and also because of the kind words of my dear friend Maria, who gave me some pretty sweet props for the blog. :) You guys make me smile!!

To my boyfriend: 

I think that sums it up nicely :)

Sydney

Living With Dysautonomia - Animated Version

I've recently discovered the joys of GIFs in the blogging world, so I thought I would share some with you, POTS style! I am going to tell the story of "The Journey to Diagnosis" with y'all; enjoy!


The first time your symptoms show up, it takes you by surprise and you're just like:

You blow it off until they start becoming more frequent. Then you decide to go to the doctor to make sure you're not dying. You are met with "Oh, it's just stress. There's nothing wrong with you." So you're like:

But then your symptoms keep coming back, and worsen. So you go back to the doctor, who tells you again that it's just stress, and you're like:

But you don't know enough to argue with him, so you just go home and deal with it. After symptoms continue, you start Googling. You find a few things that sound fitting, so you find another doctor to talk to about it. He tells you AGAIN that nothing is wrong. This process continues for months or years, and every time, you're like:

After dealing with incompetent morons for several years, you finally find a doctor who takes you seriously! And the only thing you want to do is:

The first time you hear the word "Dysautonomia," the sybtype(s) you have, and any of the medical jargon that goes along with it, you're like:

And:

Then you have to go to the hospital for testing. You go home and Google the horrendous things they want to do to you, and you're like:

You get to the hospital on the day of the testing, and they make you fill out a TON of paperwork. It's early and you're just like:

And more than likely, you'll have to fast for at least one test. If you're lucky, they'll feed you afterwards, but it's hospital food. When they bring a tray to you, initially you're like:

But then, when you open the container, it's like:

After waiting a few more hours in your luxurious "recovery suite," you get to see the doctor, and he FINALLY has a diagnosis for you!! Your initial reaction is like:

But then it's like:

You go home, happy to know what's wrong and with a treatment plan. You have hope that things will get better, and you walk around like:

But after a few months, nothing seems to be working and you're just like:

You go back to the doctor for a follow-up visit, and when he asks you how you're feeling, you respond with;

And even he's like:

So he sends you to the lab with some more test orders, and you're like:

But they come back negative, so you're both just like:

So he starts suggesting other medications, treatments, and causes for your illness, none of which sound very nice. You're like:

So you start trying out a bunch of different medications, and your body's all like:

And every time your doctor brings up another treatment plan, you're like:

But you follow his advice/ orders anyway, because he was the first one to take you seriously and you want to try to get better. Even if whatever he wants to do or try makes no sense:

But you're not a doctor, so you go along with it, like:

Meanwhile, why you're trying to find the cause of your POTS to start treating it better/ playing Russian Roulette with meds, your life starts to de-rail. Eventually, school/ work becomes something akin to:

And you're stuck there for a while. I am currently at this stage in the process, so I can't very well continue this part just yet. But I do plan to do more entries with GIFs about different chronic illness scenarios.

Comment below if you have a particular scenario you want me to address!

Sydney :)

A Day In The Life Of A POTSie...

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And what glamorous days I lead. In this post, I will detail my most enthralling exploits for you. My intent is not to inspire envy, so please - if you find yourself becoming jealous, close the tab. I wouldn't want to be responsible for inciting any reckless behavior. Only a few people were meant to live this life; don't take it personally. It isn't for everyone.

A Typical Day With Dysautonomia

This is what a normal day looks like for me:

7:00 am - Panic when the alarm goes off because you think it's a different day than it actually is and that you should have been up an hour ago. Courtesy of cerebral hypoperfusion, also known as "brain fog." Get started with tachycardia. This can serve as the morning workout, as the effect on the heart is the same.
7:01 - Realize what day it really is, turn alarm off, and reach over for meds. Upon noticing that they are not there, get up *carefully* and stumble drunkenly around the room, searching for my purse because I remember that I left them in there. Once again, courtesy of brain fog.
7:03 - Tachycardia now in full swing, just in time for Beta Blockers. Wait for eyes to adjust whilst a very large dog prances upon my tender feet to remind me that it's time for the morning walk. Silently curse taking the doctor's advice on getting a dog. Go to the bathroom and pee like a racehorse. Stumble out the door to walk dog. Pray the neighbors fail to notice my odd gait, and yell at the dog for taking me for a run across the yard. Tachycardia becomes exponentially worse.
7:08 - Manage to drag self and critter back into the house; feed dog. Sit down half way up the stairs to rest from the morning's exertion. Crawl the rest of the way to the kitchen, and make breakfast for self. Chastise self for making coffee, but forgives self with the assurance that it will improve mental and emotional state. Put milk in pantry and cereal in refrigerator. Notice and correct mistake. Eat breakfast while watching television and checking Facebook. Become very nauseous from eating and curl up on couch.  

8:00 am - Continue Dysautonomia research for a family member and possibly for medical professionals. Finish coffee I was too nauseous for while eating. Gain new insight to disease/ symptoms, and question whether or not I am just really fascinated by the physiology or obsessed. Decide on "just really fascinated by the physiology," and convince self that it will serve a greater purpose once in medical school. Get up pee again.
8:30 - Put research aside to continue watching "The Office." Replenish body's depleted caffeine stores.
9:00 - Feel guilty for not getting actual work done. Get dressed. Do a few chores.
9:10 - Return to couch and collapse, exhausted. Curse when the need to pee arises yet again. Take care of business and continue watching "The Office."

10:00 am - Learn something exciting! Try to jump up in excitement, but remember that it could cause another fainting spell. Contain self. Continues research or school work instead.
11:00 - Do obligatory "workout."
11:30 - Become discouraged with lack of endurance, cry a few tears, and get over it. Remind self in good humor that this is why I exercise at home. Collapse on couch once more and contemplate life - and lunch. Fight dizziness, pain, nausea, shortness of breath, and every other symptom that showed up today.
11:45 - Try to stomach a small, very salty meal in order to reduce dizziness. Make nausea worse. Take more pills and fill up water bottle for the second time today. Rid self of more precious bodily fluids.

12:30 pm - Still recovering from lunch. Wave of dizziness and exhaustion comes from out of nowhere, but fight through it in order to get a shower.
12:35 - Cringe as the water hits skin. Once adjusted to the hot, piercing pain, marvel at the freak show that is my body, as my skin and nail beds turn blue in the warm shower. Contemplate phenomena for future contributions to medical science.
12:45 - Start blacking out. Pray to every known deity that I don't pass out and drown.
1:00 - Finish shower, lay down on bathroom floor to recover with feet up a wall or propped up on the edge of the tub. Open door for air and thank my lucky stars that no one else is here. For entertainment, watch as the veins in lower extremities "deflate," returning desperately needed blood back to where it should be.
1:05 - Attempt to assume upright posture again. Wait until initial dizziness passes, and wait the rest out on the toilet.
1:10 - Dress self whilst combating more dizziness, blacking out, nausea, and exhaustion. Pray again that I don't face plant at home... alone. Return to couch for proper rest.

1:15 pm - Blog, paint, read, or do more school work while waiting for body to return to normal.
2:15 - Do more chores and boogy down to swingy, 40s jazz. Carefully, of course. Then return to more sedentary work.
3:30 - Relive self and dog again. If weather and body allow, take a longer walk. Psychoses temporarily relieved by fresh air.

Evening - Spend with family or, if they are not home, with more work. Or Netflix. Or Pinterest or Facebook. Really could go many ways. Muscle down some dinner eventually.

Bedtime - Usually about 10:45 pm. Thanks to insomnia, a sleep aid is required for even a chance of getting some shut-eye. I typically awake during the night one time to several times and, if I'm lucky, stay awake ALLLL night, alternating between wide-awake and semi-conscious.

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My days are also filled with cracking/ popping joints and bones, screw-ups galore (thanks to brain fog), and lots of other exciting "activities." Thankfully, I am not home or bed bound (on most days anyway), but there are MANY people with various forms of Dysautonomia who are. I can only understand a small piece of that frustration.

If you, or anyone you know, feels inclined to say to someone with a debilitating chronic illness, "Gee, I wish I could stay home all day and do nothing!", expect to be met with hostility. Oh yea, I just LOVE not being able to be out and about, doing whatever I want! I really enjoy not seeing my friends or going to school, or feeling like utter crap all day! NO. We have to stay home/ with a relative or friend so that we can follow doctors's orders: make sure we eat/ drink what we are supposed to, when we are supposed; we have to make sure we get enough exercise and can rest whenever we need to. Believe me, it isn't a choice and we aren't being lazy. With POTS, the effort it takes just to stand up is three times that of a "healthy" person. By the end of the day, my body has actually done a lot of work, and I'm exhausted despite having rested for a good portion of the day. Going out in the real world is an even bigger effort, and I'm sure hilarious to those watching me stumble around like a drunk. Leaving the house takes A LOT of preparation: making sure I wear the right clothes (have to dress for heat/ cold intolerance; may have to wear compression garments to prevent blood pooling), eating enough sodium, drinking enough water (and making sure I can get more water if I run out), getting lots of rest beforehand, and so much more. An impromptu outing isn't always possible, so don't be offended if w have to cancel at the last minute. We are often very symptomatic at home - imagine what it's like for us when we get out and about! And then there's the recovery. More rest, more fluids, more salt, more symptoms. BUT... to many of us, the preparation/ recovery process is TOTALLY worth it if we are using our energy to be with you!

Just livin' the tachy life... G-L-A-M, O-R, O-U-S!
Sydney ;)

"Glamorous" by Fergie

Damned If You Do, Damned If You Don't

I hurt a lot of people with my last post on Facebook, which was a response to the person who hurt me initially (see here to read about it). In hindsight, perhaps that should have stayed private. But it needed to be said. I have had similar conversations with these people face-to-face several times before, and to no avail. The insults, ignorance, and confusion keep showing up no matter what action(s) I take. 

Repeatedly, you tell me to "let you know when I feel bad so that you can leave me alone." However, when I do, I'm "complaining." 

You tell me that I dwell on my illness and love to complain about it.

You claim to feel guilty when I express what I'm going through. 

I am constantly told to "let it go," "stop thinking about it," and "get over it."

GUESS WHAT!

I do what you ask me to and tell you when I feel bad. I'M SO VERY SORRY THAT THAT HAPPENS TO BE ALL THE TIME!!!! WELCOME TO POTS! That does NOT mean that I'm complaining. I feel like I'm damned if I do, and damned if I don't. I do what I can for you when I am able... is that not enough? 

YES, I DO have a blog about Dysautonomia, and YES, I DO talk about it on Facebook a lot. NEWSFLASH: So do LOTS of other people!! It's how we deal. You want me to raise awareness, so that's what I'm trying to do. It's not "dwelling on it" or "complaining." And trust me, the only thing we would LOVE is to NOT have Dysautonomia! I wouldn't wish this on my worst enemy - I do not "love" it. I also have a life outside of my illness, which - OH WAIT, DOUBLE NEWSFLASH - is being currently impaired by said illness!!!!! Driving, education, employment, MY OWN BODY... Everything is affected! But I do my best to get out and enjoy the things I DO love, when I can. You know this because you have to drive me everywhere (DUE TO THE FACT THAT PASSING OUT RANDOMLY IS A PROBLEM WHEN IT COMES TO DRIVING). Again, damned if I do, damned if I don't. 

I KNOW that as a parent, you must be heart-broken at not being able to help your child. I am SO very sorry that you have to go through that. I WISH I could take away those guilty feelings, because THIS IS NOT YOUR FAULT!!! Please try to understand that, and in NO way am I blaming/ taking anything out on you!! I just need to be able to openly discuss my experiences, and if you won't listen to me for feeling "guilty," then I will discuss it elsewhere (please refer to the above paragraph). 

I know that you want me to live my life ABOVE illness. TRUST ME, I'm getting there!! But the fact is, life is hard to live when you have such an unpredictable disorder! I have no CLUE what my body is going to do from one minute to the next, so if you find this annoying, I SYMPATHIZE WITH YOU. I wish you could come up with another way to phrase that, because when you say "get over it" or "let it go," I take you literally. Sorry, but I tend to get a little upset when you think I can feel better just by changing my attitude. And yes, attitude plays a MAJOR role in disease process. But sometimes, I need to be allowed to be upset. Don't compare me to your problems, or to anyone else's problems. Every body is unique, and anger is a natural reaction to chronic illness. 

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SO...

I acknowledge that I hurt you. 

I cannot apologize ENOUGH. 

I know my actions/ words were harsh and out of line.

I wish I could take it all back! Nothing hurts me more than knowing I hurt you.

I love you with ALL my heart!!

I realize that you have made countless sacrifices on my behalf, and that you do SO much for me!

I appreciate those sacrifices and ALL that you do for me, even when I act like I don't. 

BUT...

I wish that you would acknowledge that you hurt me.

I wish that you would apologize like you want me to apologize - respect is a two-way street. 

I wish you could see my perspective, and stop being so limited by how you think I ought to deal with my illness. 

Even though I would NEVER wish this on anyone, I DO wish that you could experience a little bit of Dysautonomia for yourselves so that maybe you would understand where I'm coming from.

I'M SORRY!

I didn't mean to hurt you like I did.

I was in the wrong.

But to an extent, so were you.

Respect is a two-way street, regardless of your status in a parent/ child relationship.

We are all adults. Let's start behaving that way.

Can you forgive me?

Sydney

Ranty Pants**

**Phrase courtesy of Michelle Roger, blogger at bobisdysautonomia.blogspot.com.au

This post is going to be a major departure from the previous few, so if you wanted to read something with rainbows and unicorns, I suggest you try elsewhere.

Yesterday morning, I had to be at work at 8:30, which meant leaving at 8. Due to a lack of driver's license, I needed to depend on my father to get me there. Like always, he was running late - one of my biggest pet peeves. I made my feelings about being late for work VERY clear, and was immediately met with - and I quote - "Well, maybe you should get your own car and stop bitching at me." The world stopped for a second. I responded, rather disdainfully, with "Well, I would, except I tend to pass out randomly without warning." Another adult member of the household implored me to "Let that go!"

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Now. If you're a regular reader, you know there are a few things I won't tolerate. One of those things is ignorant, intolerant people marginalizing my very real, chronic, debilitating illness. I WILL NOT TOLERATE THAT KIND OF DISRESPECT. I did nothing to deserve any of that. First of all, my CARDIOLOGIST told me to wait to drive... BECAUSE I PASS OUT!!!!!!!!!!! Yes, while seated too! Also, in order to buy my own car, I'm going to need a more stable, permanent job than the one I have working for a local photographer on select Saturdays during April/ the beginning of May. I have no bloody clue as to WHY this is such a difficult concept to understand.

I am consistently amazed and horrified at the ignorance I experience on a seemingly daily basis in this house. Sorry, but you really don't just let something like Dysautonomia go. Where the hell have you been for the past 5 years? Have you had your heads under rocks? I thought that maybe - just MAYBE - all the doctor's appointments; pamphlets; tests; and my own personal, biologically accurate explanations of what is going on would help you to "get it." You should be able to handle the fact that I do indeed have a serious illness after dealing with my heart defect for 19 years. I also would have thought that my father, having worked in mental health for 18 years and now teaching high school biology would have a basic understanding of how the body works, and that Dysautonomia is a legitimate thing. But obviously not. I thought that we were capable of higher comprehension, or at least listening to those who are.

How do you live with people who seem to refuse to want to live with you? Sorry my piss-poor health is an inconvenience to YOU. Guess I missed the memo about how selfish it is to be sick, and how I can just "get over it" and "let it go" anytime I want to. I was not aware that one could willingly prevent their nervous system from being converted to scar tissue (because that is what's happening, according to Dysautonomia research). If it's affecting your life so negatively, maybe you should think about how it feels for me. How it feels to not be able to trust my own body. How it feels to not be able to drive. How it feels to know there's not much I can do about it. How it feels to not know when or if it will end. How it feels to live like this at the age of 18. Again, maybe I'm being selfish. I guess I just don't understand why you, my parents, of ALL people, still just don't get it.

Unfortunately, these displays of utter insensitivity occur regularly; not just in my home, but in many homes of chronically/ invisibly ill people. I do not know why the people who are supposed to act as caregivers for us refuse to believe us, but it happens. And I pity those people. I pity them for their limited scope of understanding and comprehension. I pity them for being "inconvenienced" at something that apparently, does not exist or is not legitimate. I pity them because they only perpetuate a problem that we, the chronically/ invisibly ill, deal with too frequently. Perhaps I'm being unfair. Maybe I take things too personally, although I'm not sure how I'm supposed to take being told to "let my illness go" like it's some sort of stupid, silly grudge. Whatever the case, I'm not gonna take it anymore.

Sydney

From the Dysautonomia/ chronic illness community at large... WE'RE NOT GONNA TAKE IT!!

**WARNING**: If you can't handle 100+ expletives, do not watch the following video. I'm including it because 1) This post wasn't very funny and I feel the need to make up for it, and 2) Hearing Michael Shannon read a horrifically crude, psychotic email from a deranged sorority president is wonderful. I feel that it mirrors my internal dialogue that occurs during verbal assaults from ignorant morons. Screaming, expletives, and all. So, if you can handle it and won't leave rude comments for me for posting it, proceed and enjoy :)

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Motivation

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I've always struggled with weight problems. As a baby, toddler, and pre-schooler I was too small. After my third pacemaker procedure, it seemed like all the weight I couldn't gain was suddenly getting packed on - to an unhealthy point. Neither side of my family was blessed with great figures (save for a few relatives), and that is certainly evident in my household. The weight gain was so bad that my cardiologist had to address it at every appointment. I wouldn't have considered myself to be a couch potato, and we never really kept junk food in the house. Admittedly, I wasn't the most active child, but I went outside any romped around with other neighborhood kids almost every day. I finally reached my heaviest in the 7th grade, and had been bullied about my weight since kindergarten. I had enough. I was also developing my interest in cardiology as a career, and I became painfully aware of how unhealthy I really was. 

I started eating better - salads for lunch, plenty of fruits and veggies, only the occasional treat. My diet was based on restriction, NOT deprivation. There is a huge difference! I exercised more - ab work, walking one to two miles everyday, taking the stairs. I started to see about a pound less every week on the scale, and that was a truly awesome thing. My clothes got smaller, my performance in gym class increased as did my overall energy levels, the bullying decreased until - BAM - I was 52 pounds lighter and a freshman in high school! 

Unfortunately, POTS came into my life when I was in 8th grade. My symptoms didn't deter me from exercising at first, which allowed me to continue the weight loss into freshman year. It then became slowed as the dizzy spells and heart palpitations became more frequent and severe. However, I was finally at a healthy weight, and losing was no longer a priority. But I kept losing it! My pacemaker doctor was actually concerned about it, and I realize now that lack of appetite and tachycardia will do that to ya. Keep in mind, this was at my "old" hospital, where POTS doesn't exist and I was making all of it up for attention (or because I was looney, or whatever reason he wrote in my chart but didn't have the balls to say directly to my face). Now that I am receiving proper treatment, I have managed to gain some back (although I wouldn't mind if it stayed away). If you didn't know, POTS treatment typically includes sodium and fluid loading... This does not bode well for keeping a trim figure. In the past year, I have gained quite a few of those pounds back, which I am sure can be attributed to the simple bloating and water weight that would occur with such treatment. For the record, though, I still wear a medium ;)

BEFORE...                                                                                       

AND AFTER!!

So now I'm trying to get back into a healthier lifestyle. That's going to be tremendously more difficult with POTS, but these extra pounds are not ok anymore. They suck, and need to go. So to help me out (at least with the exercise part, because that is probably the most difficult with POTS), I've created some "motivational mantras." Feel free to use them for your own personal motivation if they apply to you, or adapt them into something more fitting for yourself.

1)

You have your own unique set of limitations. Do you know what they are?

Yes.

Are you going to respect them?

Yes. 

Are you going to do stupid crap and hurt yourself?

No(t intentionally).

Have you done it before?

Yes!

Is it going to be hard?

Hell yes!

Is it anything you can't handle?

NO.

2) *This was a Facebook status update I had made, but it still helps. Also, the picture below goes along*

"Whenever I feel like giving up in the middle of a workout, I just take a nice, hard look at my workout towel. I am reminded that I DID make it to adulthood with a congenital heart defect. I made it when so many don't. I am able to do things they couldn't, so I will do it for them. For my friends, my future patients, and the CHD community at large. #strength"

Alright, those were my "deep thoughts" for today, and I kinda wanted to share them with y'all. So, if you are in a similar boat, I hope this helps. If you are one of my readers who reads because you're a friend or family member, thanks for coming back! I really hope you genuinely like this blog and don't feel obligated simply because of our relationship. If you just stumbled across my blog, welcome! I love to see all kinds of different places on the sidebar, so invite your friends as well!

And remember: whatever your size or shape, you're beautiful!! PLEASE PLEASE PLEASE with cherries on top - before starting ANY fitness routine/ regimen, CHECK WITH YOUR PHYSICIAN!! Listen to your body, and do it because you want to be healthy, not to fit into a certain size or impress someone. If you need to impress the people in your group with a number... you may want to find some new friends. PSA done!

Now here's some Right Said Fred!

Sydney :)

Strange Things...

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Yep. That pretty much sums it all up. Not the fact that I'm tired, because I practically live in a perpetual state of fatigue. What's strange is that most all of my symptoms have been kept at bay recently, save for chest pain ; slow, pounding heart rate; and a marked decrease in energy. Compared to what POTS/ Dysautonomia typically feels like, I seem to be semi-functional again. Except for the fact that I feel like I'm walking around with cotton in between my ears and like I've been binge drinking NyQuil. What's even stranger is that my optimism for my future has returned! I just got a call for an interview at a local Hallmark store, and I work for a photographer on Saturdays. I'm even allowing myself to think that maybe - just MAYBE - I'm starting to outgrow this ass of an illness. It can happen, and for now I'm allowing myself that little tidbit of hope. I also renewed my application to Shepherd University (was accepted last year but declined and attended James Madison University instead), and am remaining optimistic about my future career in medicine. :) Woohoo! 

Dysautonomia is strange. You've probably figured that out by now. I'm not sure if it's the sunnier weather, or my illness screwing around with the chemicals in my brain, increase in my ability to sleep at night, or the medications I'm on; but despite the crushing fatigue, shortness of breath after even the simplest of activities, and weird heart rhythms, I actually feel pretty happy most of the time (recently). I cannot describe to you how awful the fatigue that comes along with chronic illness is, but I'm pretty sure I should be grouchier than I feel. It's as if I haven't slept for days, was deprived of my coffee, studied for everyone's final exams, ran a marathon, had parts of my heart and brain excised, and have been playing around with kindergartners. That last one I actually have been doing, and I'm not exactly sure why I insist on doing that to myself. But nevertheless, I've been able to drag my butt out of bed, exercise, be a little productive on most days, and still manage to groove on. It's a miracle! 

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My inner realist wants to rationalize and prepare myself for the next symptom flare, or patch of bad attitude. I've had a few periods of really great health and stellar attitude, but just when I allow myself some hope, Dysautonomia comes back around to remind me that it's not going anywhere anytime soon. But my inner child just wants to stick its tongue out and say a big "Eff you!" to the realist. I feel like crap, fine. How is that any different from how I normally feel? But I also feel genuinely happy, determined, and strong for once, and I'll be damned if anything is going to take that away from me sooner than necessary. I'll get my reality check when my symptoms come back. But until then, I'm going to smile like I just came from a Botox appointment! I will outgrow POTS. I will get my medical/ nursing degree. I will be OKAY. I mean really - there are people much worse off than myself who are making it in this world, so why shouldn't I? I will do this at my own pace. Screw societal norms. It's a strange illness, but being slightly off-kilter myself, I would have to say that POTS has met it's match - for now, anyway. 

And because Disney is always the answer, here's an appropriate track from "Toy Story": 

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Cheers, 

Sydney ;)

And Now For Something Completely Different! Part 2

I wrote part one of this post as a sort of introduction to congenital heart defects and the topic I wanted to bring up about CHD in the media. Like I stated in the previous entry, most people never hear of congenital heart defects, and when they do, it's when their child is diagnosed. However, due to the increased awareness efforts of "heart families," we are seeing it being exposed more. This is wonderful! Unfortunately, the fats presented are not always accurate. Case in point: the lovely Katherine Heigl.

Heigl and her husband Josh Kelley adopted a positively adorable baby girl from Korea in 2009, who they named Naleigh. She told Harper's Bazaar that "Her heart is 100 percent fine now. She has a scar, so she won't be wearing bikinis, which is fine by us." (read the interview here)

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Now, as a congenital heart defect survivor myself, I've got beefs with both of those sentences. First, Heigl's statement that Naleigh's heart is "100 percent fine" undoubtedly lead many readers to believe that Naleigh is "cured." This is NEVER the case with a congenital heart defect. There are over 40 types of heart defects, none of which have an identified and established cure. It's unfortunate, but true. However, cured or not, most people with a CHD do go on to lead normal, productive lives (read about that in the FAQs here). Her heart may be functioning at 100% now, but that does not mean there will never be any other issues or that she is cured. This may have been said out of a simple misunderstanding  or she may have just misspoken. My second problem is with Heigl's statement about Naleigh's scar. This one is particularly bothersome for me - I have THREE scars, and have no problem wearing a two-piece. That should be NALEIGH's decision, and no one else's! How vain can a mother be? We know Katherine Heigl is a beautiful, physically flawless actress who's entire career revolves around her appearance, but really? Is she going to keep Naleigh from wearing V-neck shirts and other articles of clothing which expose the upper chest? Has acting affected her definition of beauty that much? Those scars are something to be proud of, not hidden! We earned those "battle scars," and by George, we should be able to display them proudly if we so choose. 

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I find that by showing my scar(s), many opportunities to raise awareness about congenital heart defects arise, as people will ask about them. I understand that many people are not comfortable with doing that, and to each his/ her own. Maybe Naleigh would be an excellent CHD advocate, but by being taught from an early age that those scars should be hidden, she may think that her scar is something to be ashamed of. 

That's really what's wrong with society today. Everyone is too focused on physical appearance, and not on character. People with congenital heart defects usually learn early on that looks mean very little in the grand scheme of things. After all, I think most of us would agree that it's better to be alive than to worry about a scar. In fact, I think heart scars add character! They have awesome and inspiring stories, and pretty much always help you win in scar contests (the face on the boys' faces are priceless when a girl beats them!). So, I will leave you with the ideal that looks alone rarely take you far in life - it's what's inside that counts. And if that was too cliche for you, just ponder the picture below of some Camp Odayin kids who aren't too proud to show their scars. A picture really is worth a thousand words. 

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Be kind to yourself.

Sydney :)