And Now For Something Completely Different! Part One

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Who doesn't like the cross-dressing, chaotic, wonderfully random, and completely off-the-mark world of Monty Python? I haven't met anyone who openly admitted to NOT being a fan of Monty Python, and rightly so. However, I won't be discussing this lovely media phenomenon any further. Instead, I will be switching from my normal POTS-related posts to something completely different - congenital heart defects! To begin the post, I will start with some FAQs that will give you some background on congenital heart defect facts.

Q: Congenital Heart Defects? What the heck are those? 

A: Congenital Heart Defects, or CHDs, are problems with the heart that are present at or before birth. Some can be detected before birth during prenatal tests, some are found at or shortly after birth in the hospital, some are found after the baby has gone home and becomes very sick. Others are not detected until later childhood, adolescence, or even adulthood. Unfortunately, there are some that are not detected until it is too late. 

Q: How come I've never heard of them? 

A: That's what the entire CHD population would like to know, as congenital heart defects are the MOST COMMON type of birth defect in every country. They affect approximately 1 out of every 100 babies in the United States, and there are currently over 2 million Americans alive today with a CHD. The first time many people learn of them is when their child is diagnosed. Many awareness projects are underway around the world right now. 

Q: So... is a CHD like, a hole in the heart?

A: Not always. "Holes in the heart" are called "Septal defects" are just one type of CHD. There are over 40 different types! They can range from mild and requiring no active treatment, to life-threatening and requiring surgical intervention within the first few days of life. Most of these defects are structural, meaning that they affect the physical structure of the heart and/ or blood vessels leading to and from the heart, but some of them are electrical, affecting the electrical pathways in the heart and the heart's rhythm. 

Q: What is the prognosis for someone born with a heart defect?

A: That all depends on the person, the defect, and any other underlying issues/ complications. Modern medicine has made it possible for most people to live long and productive lives; even those with more complex and severe defects. In fact, there are now more adults living with a CHD than children in the U.S., and there are several celebrities living successfully with heart defects: Shaun White, Brian Littrell, Max Page, Jessie J, and Bret Michaels to name a few. Sadly, many other celebrities have passed away due to an undetected CHD or complications (Kirk Urso, John Ritter, and John Glascock are just a few). However, about 50% of complex CHD survivors will have some sort of neurological or developmental disability. Congenital heart defects are about 3 times more common than ALL types of pediatric cancers combined, and are twice as deadly. 

Q: How does someone get a congenital heart defect?

A: A heart defect will usually occur during the first few weeks of pregnancy when the heart is forming, oftentimes before the mother knows she is pregnant. They are very different than the heart disease that we typically talk about in society - obesity and lack of exercise do not cause CHDs. Sometimes they can be caused by genetic or chromosomal defects (Down Syndrome in the fetus and Lupus in the mother, for example, can be associated with congenial heart defects). They may also be caused by environmental factors and maternal behaviors (drinking and smoking can cause birth defects, as can exposure to toxic chemicals and substances such as lead, mercury, and radiation). However, the cause of most CHDs is unknown. 

**These facts are available from the Children's Heart Foundation (here). This information is only intended to inform and educate, NOT to diagnose. If you are having troubling symptoms, see your medical doctor immediately. If you or someone you know are expecting, PLEASE ask for a heart screening for your baby! 

Part Two will be up soon! 

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Sydney :)

"Well, You LOOK Great!"

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UGH. If I could do ONE thing to ameliorate the social woes of the chronically ill population, I would eradicate THAT phrase! Those 4 words, or any variant thereof, are the bane of social interaction for many of us who suffer with a chronic/ invisible illness, particularly if you've been ill for a long period of time. It's also a favorite subject of many chronically ill bloggers. Why? That can be a bit tricky to explain to someone who isn't sick, but I will try my damnedest.

We, as the chronically/ invisibly ill community are fed up with that phrase. Most of the time, the people who say it mean well, but sometimes we are met by a skeptic - "Well, you LOOK good... why are you still saying you're "sick"?" THIS is why we hate hearing that. It sounds to us like you think that because we have an aesthetically pleasing appearance, there's no way we can feel as bad as we say we do. Unfortunately, that's the case for some people. I'm going to break this process down step-by-step so it's easier to understand:

1) Person not so intimately involved with the medical aspects of my illness approaches and asks: "How are you feeling?"
2) I typically answer with something like, "Oh, you know, I have good and bad days" or "I'm alright, but still having a hard time with symptoms."
3) They look me up and down and say, "Well, you look great!"

That's phase one of this process. It happens whenever I'm well enough to go to church, or really anywhere I'm forced to interact with people outside my immediate family or circle of close friends. Now, I know they mean well, but I'm still trying to think of what benefit they think this sentence gives to me. The next phase in this process can go one of two ways:

1) I say a forced "Thanks" through gritted teeth and leave, as an awkward silence envelops the immediate area; or,

2) Say, "Thanks, but I wish I felt as good as I look." This will generally lead into a lecture on my part about the autonomic nervous system; Dysautonomia; and how they can't see the nausea, wild swings in blood pressure or body temperature; the sudden and unexpected changes/ release of hormones (any and all of them), the arrhythmias, hypoxia (lack of blood flow to the brain), etc. They will then respond with a stuttered "I'm sorry, I had no idea" after picking their jaw up off the floor and leave, finally decently educated.

Usually, the second part can only be executed on a "good day," which unfortunately, isn't often. However, I have never received further skepticism after providing such a thorough explanation. Yes, I do my homework. It is in my interest not only as a patient, but also as a dedicated biology/ pre-medical student to learn the technicalities involved with Dysautonomia. And not just Dysautonomia; it is in my best interest to familiarize myself with many different illnesses that I may be confronted with as a medical student and professional.

I digress. I am now going to *attempt* to explain WHY "But you look so good" can be so hurtful.

- It can seem to us as though you are trying to say "Well, you LOOK good, so you can't possibly be sick." That, in itself is a hurtful thing.
- Looks can be deceiving: No, I don't usually look sick, and I certainly never look as bad as I feel. POTS generally won't affect my appearance, and when it does, you won't see it unless you live with me. The most you will see is my pasty face, purple extremities, and a blank, tired-looking stare. It's called an "invisible illness" for a good reason.
- The autonomic nervous system controls every body system. So when it gets damaged or becomes diseased, all hell can break loose - on the INSIDE. Unless you are a highly-skilled medical professional looking for pupil reactivity, cyanosis, or edema, the most you will notice from the outside is that we "just look tired." I suspect you'd look tired too if it took you three times the normal energy expenditure to simply stand up, and by doing so causing a cascade of complicated physiological reactions that literally makes your body work and feel as if you were running a marathon - ALL DAY. (See the graphic below for a visual representation of how the ANS as a whole controls the body.)

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Many of us have encountered medical "professionals" on our quest for answers who use this exact approach: LOOKS. It is not uncommon for someone with POTS (or any other invisible illness) to be met with, "There's nothing wrong with you; you're just stressed out." This is BEYOND devastating to hear from a supposedly highly-educated physician who claims to want to help people. We leave their offices hurt, confused, and still searching for answers instead of helped and enlightened. When you say it, those feelings are conjured up again and we leave you the same way we left those physicians. 

- Many of us are women or teenage girls, so we are often labeled as "stressed out," "emotional," or "anxious." When you dismiss us like the doctors, you are sending the same message. 

-Because a lot of us are females, we know how to use make up to look "less tired" and "less pasty." We can be vain creatures. At the same time, however, we don't want to worry you. Women are the nurturers, and we don't like to be the nurtured. It's just nature's way. Particularly here in the South, ladies are expected to "save face" and deal with their problems in a discreet and private manner. We are taught to "grin and bear it," if you will. 

(Normal ganglia vs.  Dysautonomic ganglia... No WONDER we feel like crap all the time! I think this is pretty powerful in explaining what Dysautonomia "looks" like. Source)  

So that's why "But you look great!" is such a hurtful thing to us. Like nails on a chalkboard. Again, we know most people mean well when they say this, and you probably wouldn't think of half of these reasons why it's so damaging. But now you know, and maybe will think about what you are actually saying to someone. Just my thoughts on a very touchy subject for the chronically ill population. ;)

Sydney

"Mama Said" by The Shirelles... because mama said there'd be days like this.

Keeping the Beat

(Where is the exit??)

Yesterday I had my first comprehensive pacemaker check at Johns Hopkins, and I do not regret leaving my old hospital for a second! While Baltimore itself is a little more difficult to navigate, being a patient here is far easier. Not once was I met with a confrontational, rude, or dismissive comment, and my new pacemaker doctor is even HAPPY to talk to me about POTS!! She is knowledgeable, compassionate, and works with my POTS doctor to make sure every aspect of my health is addressed. Even the staff are pleasant! When I asked a question, it was answered. No one told me that "POTS isn't a real thing," and no one chastised me for leaving school because of POTS; in fact, my reason for leaving was accepted and even sympathized with! Not that I'm searching for sympathy, but as a Dysautonomia/ POTS patient, this is an extremely rare thing to find at major medical facilities. And I wasn't even there for my POTS! I have found my "dream team"!

The view across from the Children's Hospital 

Part of the old Johns Hopkins Hospital

 Not sure how I feel about wearing a band that says "Corporate Security"...

The tastefully decorated interior of the new Charlotte R. Bloomberg Children's Hospital (there was also some sort of abstract ostrich opposite the fish/ chicken things)

I arrived super early to my appointment (as in a couple hours early), so I did all my paperwork then left to grab a snack and get some reading done. I went back to the Taussig Heart Center half an hour before my appointment, and as soon as I walked into the waiting room, I was met by choruses of "We've been waiting for you!" by the receptionists. I was shocked, as I was still half an hour early. I waited for the nurse to come get me, expressing many "I'm so sorry!"s all the while. The nurse, a very sweet woman, came and took me back for vitals and an EKG (electrocardiogram), which is the standard procedure at every congenital heart center. Then she escorted me to a small waiting area where I was to wait to be taken for an ECHO (echocardiogram). Now, I thought this was a little strange, as I had just had an ECHO in December with my POTS doctor. I thought that these results would have been shared with my pacemaker doctor, as we try to share as much as possible and my heart defect is electrical, not structural. Then she handed me my ECHO papers to take back with me. At the top of the paper was my last name, but a different first name. The physicians listed were also different. I promptly took it back to the nurse and come to find out, the desk had me confused with another patient! She had never shown up for her appointment, which is why everyone was so flustered when I walked back into the clinic half an hour early. There were actually 3 of us scheduled that day with the same last name! 

After that mess was cleared up, the pacemaker tech took me to my luxurious exam room and proceeded to conduct the pacemaker interrogation, sans ECHO. I still have about 4.5 years left on my battery (which is AWESOME, as I have had this current one for 10 years already!!! That's a MAJOR cause for celebration when it was only supposed to last 8 years, and the ones preceding it lasted 4! I need to plan a party!) and my leads (the wires that connect the pacemaker to my heart) still function wonderfully. I am still 100% dependent on the pacemaker in my ventricle, and have had a 5% increase in pacemaker dependency in my atrium (now 35% dependent). What that means is that the pacemaker does all the work for the bottom, pumping chamber of my heart (which is common in complete heart block), and the upper chamber can do most of the work on its own, but needs help 35% of the time. Then it was time to test the leads, which meant speeding up the pacemaker and slowing it down to see when the device captured and test what my heart can do on it's own. That part kind of sucks. Each lead must be tested, both the atrial and ventricular leads. We sped up the pacemaker to about 90 beats per minute (bpm) for a few seconds first for the atrial lead, then turned it off since the atrium can do work on its own. The same procedure was repeated to test the ventricular lead, only I was allowed to lay down for the second test. This time, she only turned it down into the 30s for a few seconds, and the lead captured twice!! Hooray! One capture would have been exciting, so we can safely say the wires work great. 

I finally got to see the doctor, whom I had met once before at my tilt table test to diagnose POTS. She. Is. AWESOME! I seriously love this woman. She explained that the tachycardia episodes that are common with POTS are mostly only occurring in the atrium, which is what I have wanted to know since I saw that I was having rates over 200 bpm. This makes sense because my atrium can essentially go as fast as it wants. We actually talked more about POTS than we did about the pacemaker. She suggested that I double the Florinef (the steroid that causes water and salt retention - oh joy) because I stopped taking the Midodrine (to increase my blood pressure). She also suggested that I wait a few more months before driving, since I passed out sitting in class about 6 months ago. She was very impressed with my knowledge of POTS and the treatments I'm on (medications and lifestyle modifications). She even said I would make a great biologist! I'm a nerd I know, but that is one of the best compliments I could ever receive. YAY!!!! **Grins like an idiot**

I go back to see my POTS doctor in June, and to check the pacemaker battery again. Oh, what fun. Finally we were on our way home! We stopped for coffee, but my gift card was 39 cents short. The only other thing I had on me was a 10-dollar bill, so the cashier paid the remainder for me. There are still some truly great people left in this world! It was definitely one of the better trips I've had for a doctor's appointment, despite my brain fog preventing me from remembering to ask at least 5-10 questions that I had meant to ask. My faith in the medical system has been restored, as has my ambition to work in it as a physician. All is right with the world. 

The Bionic Sydney :)

A Good Ol' Fashioned Hissy Fit

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One of my listed occupations in my blog profile is "Diva." And what a full time job that is! A main duty of being a Diva includes knowing how to throw a proper hissy fit, especially if you live in the South. Most of the time, these outbursts are reserved for the privacy of the bedroom in order to save face, but can occasionally be thrown in pubic areas where people are prone to stress. My example? The DMV. This is a perfectly acceptable place to throw a hissy fit (in my humble opinion), especially when those tricky test questions for the permit/ license trip you up. I had gotten to the last question of the written portion of my test and missed it - my last allowable "wrong answer," if you will. I had studied the manual ALLLL week! It was a simple enough test; how could this BE?!?!?!? I have a few ideas of how it could be, but none of them are exactly appropriate or lady-like, so I shall refrain from sharing them. Needless to say, I felt like a complete moron. This resulted in several, intermittent hissy fits during the rest of the day: the first of which occurred right after I failed in the DMV lobby.  

Now, I know lots of people fail the test the first time. But that doesn't mean I spared myself from my own criticism and mental self-flagellation. No sir. I do not accept failure from myself, especially when it concerns such a simple task such as a 25-question multiple-choice permit test. Ever since the 3rd grade I have been a perfectionist, even to the point where my elementary school teachers were concerned and wanted me to be seen by a counselor. Perhaps it was knowing that I was meant to be a physician from the age of four; perhaps it was knowing that without the perfectionist attitudes of my own doctors, I wouldn't be here today; maybe it's just genetics. But whatever the reason, failing that test ate me alive. I don't fail tests. I got accepted into 5 of the 6 colleges I applied to, graduated high school with a 4.7 GPA, earned  4s and 5s on a couple of my AP exams. I have only earned 2 Cs in my life, the first time being in Calculus my senior year and the second time in my full-of-crap general philosophy class at JMU. I earned a B in Biology 114 (the bio majors' bio), an A in Biology 203 (Viral Discovery and Genomic research laboratory), and an A in Foreign Language 490 (Medieval Latin, thank you very much). I DON'T DO FAILURE. 

It wasn't just failing that test, though. Events throughout entire week (or month, really) leading up to my diva-sized meltdown only added to the stress. I switched pacemaker doctors and hospitals entirely, and have my first appointment with my new doc tomorrow but never received paperwork; the results from my last month-long heart monitor were never received by my POTS cardiologist, so I signed an authorization to have them released to me a MONTH ago, and STILL have not gotten them; the results from my 24-hour heart monitor turned up NOTHING despite my feeling many symptoms, and will probably not help me in my quest for answers; my POTS has been even less predictable lately and a few new symptoms have started cropping up; I still don't know when I will be returning to real school; the realization that I will need to start paying off the massive student loans I took out last summer has hit me, and I have no money or job to support that; my Internet has been smoking crack an not working very reliably; and there has been an increase in people not believing that I truly am still ill. On top of all of that, I failed that simple little test to get my driver's permit, and Mother Nature decided to play her monthly cruel joke on me (which is a huge problem for people who already struggle with low blood-volume). So I'm going to blame my poor performance on the fact that POTS symptoms were being exacerbated by Nature's disinclination toward women. Yeah. That works, right? Then let the hissy fits commence! 

Blah. I am thoroughly exhausted from throwing so many hissy fits and from the utter abuse the Universe has deemed necessary to put my body through. Here's to hoping I get some decent sleep tonight and that I won't have to show my Diva tomorrow at the hospital (another perfectly acceptable place to throw a fit if one is warranted). Lord knows I've thrown plenty in my old hospital. 

And now for a tribute to the finest Bitch Fit ever thrown in the history of Divadom:

Remember: 

Keep Calm

and if that doesn't work

Throw a Major Hissy Fit!

Sydney the Diva ;)

Some Major Battle Victories in the War on POTS

Here in the South, young people are (usually) taught to respect their elders. My parents reared me that way, and I have always tried to show it. But recently, I have found great difficulty in holding my tongue when it comes to disbelief of my illness. Specifically, when older people express disbelief. A few elderly gentlemen in my life have found themselves close to encountering a full-blown cat fight over it. Southern ladies are also taught to not start fights, but we sure as hell are allowed to finish them. So that's what I did.

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Now, I love my grandparents. They have always done so much for us, and they are just awesome. But my grandfather is one of those men who thinks the only excuse for a sick day is if something is broken or bleeding profusely. So when I left college, he didn't quite get the memo that it was for health reasons. I LOOK healthy; why should I need to leave school? I was accused of goofing off, wasting time, and not knowing what to do with my life. Keep in mind that I am still pursuing my dream of becoming a pediatric cardiologist, which I've had since the age of 4. Keep in mind also that I am taking online courses which are all medically-oriented. You can imagine my dismay, utter shock, and raw anger upon hearing these accusations over a family breakfast one morning. When he first started talking my face probably looked like this:

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But after I realized that my arguments were going nowhere and he just kept repeating himself, that little pickax called "Guilt" started to chip away at my soul (read about Guilt and Chronic Illness here). Doubt of whether or not I was taking necessary time off crept in and I felt like I was just being a lazy loafer. I excused myself to the ladies' room and had myself a small meltdown. That was 2 months ago. 

Yesterday, my grandparents came over for Easter dinner. After the festivities, we were all lounging around in the living room when my grandfather started in on another lecture of how concerned he and my grandmother were for my future and how he didn't want me wasting my time. Being in a slightly better mood than the last time one of these impromptu lectures occurred, I quickly whipped out my best pre-medical student voice and every simplified, lay-person analogy in my repertoire for POTS. I calmly explained what was going on inside my body, that there was no way to know when or even if it would go away, and that I am still intent on becoming a physician. This seemed to placate him and, after answering a few of his questions, I brought him some information about Dysautonomia and POTS. He skimmed the list of symptoms (which took up an entire page) and nothing more was said about my "time-wasting" tendencies. SCORE! This, my friends, is a major win in the Dysautonomia world!

That was not an easy win, but it was only one person. Church, on the other hand, is like fighting a small army of people who have all decided that I left school to sit at home all day and eat Bon-Bons when in actuality, I left to be able to take classes on my own time, exercise when I am able without having to go anywhere, and to be able to follow doctor's orders 24/7. Fighting this myth is made even more difficult when you attend a small Methodist church - composed mostly of older, retired people - in a small Southern town, where people's opinions of you become rumors, which circulate like wildfire (you would think they would have been over that after high school, but I guess they need something to occupy their time). 

Two gentlemen in my church have approached me recently, and every Sunday it seems like I am faced with some sort of verbal attack on my life choices. The first incident was by a kind man who had donated his old golf clubs to me, and had even taken me out on the course to play 9 holes once. The particular Sunday that he chose to lecture me was kind of a bad POTSy day, and I just wasn't having any nonsense. He told me that I "can do anything I put my mind to," and I needed to get back to school. I explained why I left and that a career in medicine was looking kind of iffy. Instead of dropping it, or even giving me some cliche`platitude like most people would, he said, "Well, sometimes interests and goals have to change." I was about fit to be tied. I explained through semi-gritted teeth that I've wanted to be a doctor since the age of 4. He repeated what he said about goals needing to change. I stared at him and  mumbled something about him not getting it. Do you think he stopped there? Of course not! He hugged me a little too tightly and mentioned another golf outing when the weather got warmer. I shrugged him off and explained that an impromptu round of golf wasn't going to be possible for a while due to the highly unpredictable nature of my illness and of the possibility of passing out. That was really a stupid thing to say, as he obviously didn't get it the first time. He responded with an "Oh, you won't pass out." At that moment, the world stopped for a moment.Anger exploded inside of me. I could only stand there staring at him with my mouth hanging open stupidly, trying to comprehend the mind-numbing ignorance. Repressing the urge to be physically violent, I simply stomped away, shaking my head in my own state of disbelief. Win for remaining semi-civil! 

Another man who seems rather fond of criticizing me sits right behind my family during service. He happens to be a heart patient himself, and we've been friendly for many years. Last Sunday was the first time we had problems. Boyfriend was here visiting from Minnesota, and he ended up having to hold me back by the end of the conversation with this gentleman. He, like the others before, felt a compelling need to tell me that he didn't want me “wasting my life.” However, the fact that he prefaced the conversation with, “Well, since the doctors don’t know what’s going on, maybe it is all in your head” ignited a fuse that has only been lit a few times in my life. That is exactly what was said, verbatim. With the anger I felt combined with my hypoxia, I can't even remember what I said to him. I probably just blubbered like an idiot. A few kisses and hugs calmed me down and I finally pushed a brochure about Dysautonomia into his hands and left. Nothing more has been said about my supposed "delinquency," so I'm putting that one in the "Win" column as well. 

In addition to battling the cynical and dismissive people in my life, I have been winning a more impressive battle. Recently I was able to come off of my Midodrine!! Midodrine is a commonly used medication with Dysautonomia patients for raising blood pressure, and it was actually causing my BP to be too high. Yay? Still a victory! Also, my symptoms have much improved and I have been able to complete some work outs and neighborhood walks!! Bonus! On the downside, however, the results from my last 24-hour heart monitor showed nothing significant, so I’m still stuck wondering what is causing the weird heart beats. I’m going to see my new pacemaker doctor, who works with my POTS cardiologist, on Thursday, so hopefully they will have some insight and not just think I’m making it up/ crazy. I've caught these arrhythmias on pacemaker interrogations and blood pressure machines, so I know there's something there. We shall see...

Happy Belated Easter! :)
Sydney

  

The Shortest, Sweetest Six Days Ever

While I was on my short hiatus from blogging, I was enjoying 6 symptom-minimal days spent with my boyfriend. This was actually the first time we had really been together, although we had (sort of) known each other for over 3 years. We met through Camp Odayin , a camp for children with heart disease.

I only had the privilege of attending Camp Odayin for 3 years, while he had gone for 6. We were both born with heart defects and we both have pacemakers. In fact, the majority of campers have congenital heart  defects, and many of them have either an implanted pacemaker or defibrillator.I think I speak for the majority of campers and staff when I say that Odayin is, simply put, the best place on the face of the planet. And no, we don't just sit around doing arts and crafts because we are heart kids - we go kayaking, horseback riding, swimming; we do archery, attack each other with water balloons, have a talent show and a dance, and basically participate in "normal" summer camp stuff, but in a medically supervised environment (2 pediatric cardiologists are on-call 24/7 and there is a nurse in each cabin). It's truly awesome.

Boyfriend and I actually hit it off about 6 months ago, when he contacted me through Facebook. Numbers were exchanged, many Skype dates were had, and the rest is history. We both share a love for "That 70's Show," stand-up comedy, Peanuts (the cartoon by Charles Schulz), extremely cheesy tourist traps (hence our date to Dinosaur Land), and helping others (among lots of other things we both enjoy).

For 6 short days, I felt almost "normal," and had very few symptoms. We went on a few adventures and really enjoyed being together. We made cookies, terrorized the Downtown area, verbally attacked (but kind of secretly liked) Dinosaur Land, held hands, watched lots of movies whilst curled up on the couch, were present at my brother's Arrow of Light ceremony to become a Boy Scout, explored the very sketchy woods behind my neighborhood, and played some pretty competitive rounds of Uno and Scrabble. I can't remember the last time I had so much fun! I'm already counting down until the next time we are together, which will be in late May.

He treats me so well, and I can honestly say I feel like the luckiest girl in the world. I know, cheesy. But this man is truly amazing! My man-eating dog refrained from viciously attacking him, he got me a plane ticket for Valentine's Day to come see him, changed the batteries in the smoke detectors, and put gas in my mom's car. Seriously, this guy is wonderful. Conversely, he's the one who caught a Southern Belle, so I think we're equally lucky. ;)

Sydney 

Guilt and Chronic Illness

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What's this? A post about guilt? 

WAIT! Don't leave yet! I'm not sending anybody on a guilt trip, although I would love to tell you all about my fabulously guilty adventures, if that's alright. 

Guilt is part and parcel of being chronically ill, both for the ill person and their loved ones. I've been on both sides of it, and it isn't pretty. I had the first taste of it when I was around 7 or 8 years old. My grandfather had terminal cancer, and during cold and flu season, we were not allowed to visit due to the risk of making him even sicker. I did not fully comprehend why we couldn't see him, but I do remember feeling incredibly guilty. I remember how awful that felt: being so helpless and sad, and feeling like I had done something wrong (whatever that could have been at the tender age of 8). But that's the whole thing! Guilt is often an irrational, illogical feeling. This can be evidenced perfectly in the sick people themselves. 

Now that I am the ill person, I've got my very own brand of guilt, and it makes even less sense than the case I just described. I feel guilty for leaving school because I know there are students with Dysautonomia who are able to stay. I feel guilty for being up at 3 AM, writing this when I need the sleep so I can get the house ready for a very special gentleman caller. I feel guilty that my friends and family have to see me so ill. I feel guilty that I can't pick up and go wherever I want, whenever I want with my friends. I feel guilty that you are reading this incoherent slop written by the crazy, sleep-deprived woman with nothing better to occupy her time at 3 in the morning. I even feel a slight guilty twinge at getting such an obscure, under-recognized, and highly-ridiculed disorder. Way to kick me when I'm down, universe! If I have to be sick, can I at least have something that people believe?? There is no better way to add insult to injury than for respected physicians to tell you that "POTS is not a real, physical illness" (see here for my dealings with that gem). I feel guilty for feeling guilty! I'M the sick one here, shouldn't that make me entitled to guilt-free days?

Oh, that's right. I completely forgot. Dysautonomia is the disease for over-achieving, Type-A individuals (studies have actually shown that people who get Dysautonomia tend to be high-achieving, Type-A personalities). Perhaps there is some truth in POTS/ Dysautonomia being a stress-related illness, what with prolonged elevated levels of stress-hormone and all. But just like heart disease, stroke, and other stress-related problems, it is a physical disorder which can be medically verified! I digress. For someone who has striven for excellence since the third grade, accomplished many outstanding achievements, and was in the top of her class (not trying to toot my own horn, just stating fact and making a point), there is no greater irony. I have always been challenge-oriented and extremely competitive. Now the challenges I take on include climbing the stairs without needing to stop and making it through the store without needing a wheelchair to finish what I came in for (no sir, I can't just leave or sit down to rest. I'm here to accomplish something and I will get it done, shoddy body be damned!). Some days getting out a complete and coherent sentence is a competition in and of itself. And I feel guilty because I can't do the things I used to. Guilty because it gets worse every year, and the treatments don't seem to be helping. Guilty because maybe I would get better if only I would listen to all the comments made by well-meaning yet ignorant people (no, I do not care to try your magical root tea made by your local wizard, nor do I care for crystals, small animal sacrifices, vegan diet, marathon running, or any other remedy that you claim will help. I'll consult my doctor on potential treatment plans, thanks). *Bangs head on wall repeatedly* 

I am told constantly to "take it easy, do things at your own pace." Oh how I wish it were that easy. While I may be feeling guilty for not being as intelligent or athletic (HAHA! Erm) or exciting as I was just a few years ago, I will be indulging in a combination of chocolate, YouTube episodes of "Here Comes Honey Boo Boo," Pinterest, and copious amounts of coffee. I deserve to have some guilt-free time for myself, to not think about what is going wrong inside of me. I may or may not finish cleaning the house today, as my body decided to deprive me of Melatonin and desperately needed sleep. This post took me over 2 hours to write; I would love to see how house work would go. I'm sick, damn it! I don't need the guilt. And if conquering that emotion and eliminating stress is going to reduce me to one of those strange Type-B people, then so be it. Yes, I know. I laughed too.

Wishing you a stress- and guilt-free day, 

Sydney :)