A "what Does Pots Mean To You" Letter Written For My Pcp

[cardiactec]

my PCP has been great over the past couple months, allowing me to go in and just sit to vent over this whole condition........he listens and cares deeply with what i tell him i go through, even if he doesnt understand it personally himself..........anyway, he had me write him a letter (havent given it to him yet, i just wrote it) about "what POTS means to me".............it is basically my story of what i have faced over the past 6 years...................

for all of you, feeling like you are at the end of your rope, dont give up. try and tell your story, aloud and on paper, to anyone who will listen. it'll help to deal with the emotional aspects in dealing with autonomic dysfunction. i'd find a good doc, perhaps your PCP or a counselor, to be able to vent.....writing a letter is a good idea...........i tried to write this in a way that my doc could understand, through analogy................

let me know your feedback. i'm not completely finished with it yet (even though i'm up to like the 6th page!)....it's more like a novel than a letter!

anyway, enjoy!

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Dr. __________,

You asked me to write you a letter regarding what POTS means to me. I must first start by explaining to you what POTS MEANT to me and presumably those that I sought for help for my symptoms, before it was ever recognized that my symptoms were all due to autonomic dysfunction?..

?Anorexia?, ?Eating disorder?, ?Depression?, ?Anxiety?, and ?Illicit drug use? ? all false speculations, false ideas, and false allegations that somehow all had been deemed the causes of my unexplained symptoms and you ask, ?What does POTS mean to you??

At first, it was a guilty verdict. It was supposedly something I could avoid, something I was told I could just ?turn off? by thinking happy thoughts or taking prozac, something I could prevent if I supposedly stopped this inconceivable falsified notion that I was doing drugs or sticking my finger down my throat. Even after the diagnosis of POTS was made I was told by an ER physician that my heart rate of 220 was from illicit drug use and not to try and argue with him about his suspicion (the drug use too they also suspected the cause as to why I was so thin appearing?heh?..if it wasn?t an eating disorder to cause the weight loss/nausea post eating problem, it was from drug use). One time I was told to just ?fess up? about using drugs so that the doctor?s wouldn?t have to go through the lengthy process of blood work to check for drugs in my system. Mind you, I didn?t ask or initiate any cardiac workup for any tachycardic event because I never had/felt palpitations and yet still, this was my fault.

A guilty charge was read as me being the cause for my symptoms. As fast as I was trying to run away from the horrors of my daily symptoms, even faster I had to run, making a detour from the place and people I thought would help to diagnose and treat whatever it was that was ailing me, ravaging the normalcy of what I knew life to be like before getting sick, only replacing it with captivity. Sick people seek a medical doctor for answers and treatment for their sickness, not a prosecutor to be read a guilty verdict because of their sickness. And you ask, ?What does POTS mean to you?

This is one of two letters I have written since dealing with POTS. My first letter I wrote to God, after two years of feeling so miserably sick, of doctor?s entertaining crazy ideas of eating disorders and drug use as the cause for my nausea/other symptoms, my thin body habitus, and even the fact that I was very young and yup, even that I was also a woman (because young people don?t get sick and all women are just hereditarily marked with a ??crazy?? gene? is this what they teach you in med school???). So there were three strikes against me: age, gender, and body habitus. These three pieces of evidence led to an easy prosecution and so it was, guilty as charged.

I started writing my letter to God, explaining how I couldn?t deal with how I was physically feeling anymore, that I couldn?t deal with all of this being summed up as some ?psychological? problem because I knew it wasn?t, that I couldn?t deal with nobody believing me in how I was feeling. I wrote out of desperation, a plea for either mercy from the symptoms I was having or for a revelation to be imparted on someone so that I could start getting some relief from my symptoms and possibly some answers to what was going on physiologically.

Thankfully that first letter to God, written 4 years ago is followed today by a second letter, now finding after two years of needless suffering, that there are still good doctor?s who care and intently listen to try and find the TRUE cause of what is ailing their patients and not to just write them off as psychiatric. I now know that even if I can?t get complete relief of symptoms, I can get relief of the POTS triggered emotional roller coaster ride because there are doctor?s who practice medicine above and beyond standard patient care. So a thanks, in advance, to you, Dr._____ and the other?s that acknowledge POTS as both a REAL and debilitating condition, willing to do all that can be done to make this journey an easier one to walk through. I couldn?t imagine walking through this the way I had to four years ago, with people just pointing fingers at me, like this was all my fault.

After getting the POTS diagnosis, there was at least some closure in knowing that I wouldn?t be blamed for my symptoms but still, my limitations/symptoms took a toll on me emotionally, and still do. I have just recently allowed myself not to be fearful of showing my frustration or upset with my physical limitations or how I feel physically due to POTS.

For a long time, I stripped myself of any ?down and out? emotion I was feeling due to how I was physically feeling from POTS. I was so scared and still am to some degree to allow any dismal emotion to show towards how upsetting it is to have to live with this chronic, physically limiting condition. I am scared to get upset over/about my POTS because at the beginning of all this, all was regarded as behavioral/psychological as the cause for my symptoms.

I can?t deny the thoughts that if I fortuitously showed one ounce of sadness or frustration from this condition to any medical personnel, that I?d be read the guilty verdict again, that this would once again be viewed as all emotional/behavioral distress, and that I?d be left to fend for myself. So for a long time, and even to some extent presently, I have a hard time letting people see how this condition effects me on an emotional level because the blame for all my symptoms at first was erroneously assumed just that, emotional/behavioral/psychological.

So not only do I fight the physical limitations of POTS, but I feel as though I must fight off the emotional low?s that are instigated by POTS flare-ups/symptoms for fear of someone saying ?ah ha, she cried, so it must not be POTS but emotional/psychological distress?. It?s definitely more baggage than I should have to carry, to have to worry about once again, something that I am supposedly doing (self-induced vomiting/drugs) in being the etiology behind my symptoms. I think I was so devastated by how I was treated when nobody knew what was going on that it still effects how I choose to talk/discuss with people in how POTS effects me. Even to the lay-person, if you explain POTS to them as ?autonomic NERVOUS system disorder?, all they hear is NERVOUS and the primary symptom ?fast hear beat?. Immediately they think you are just a nervous, panic-stricken wreck. So you ask, ?What is POTS to you?? It was at first, a postulated falsified identity of being a, anorexic drug addict, a guilty verdict.

POTS, many days, feels like playing Russian roulette. I never know when the loaded bullet of debilitating symptoms will fire, or if just firing blanks. It means me having to decipher whether my plans for each particular day will cause a flare-up of symptoms or if no matter what it is I plan, somehow the loaded bullet full of symptoms will be triggered. Some days there is no warning. I will wake up feeling fine and the next minute, I?m nauseous, I?m weak, I?m tired, I?m dizzy.

POTS is a constant game that I am forced to play. Unlike a board game where the game both begins and ends by a mutual understanding from each game participant, instead of me having any say, POTS is the determiner of when the symptoms both starts and ends. Every morning is a guessing game with how I will feel throughout the day and what event or activity might trigger my symptoms. Usually my days are set up according to how the POTS is behaving for each particular day. It becomes a sick and twisted game in discerning how to plan the day AROUND POTS and not WITH POTS, how to determine my physical capabilities for the day without having to recognize or be aware of what I might not be able to do or accomplish because of POTS. Do I move the game piece forward and gamble on the chance of feeling really sick? Do I move back to avoid being symptomatic? Do I move at all? I have come to find that in any of the three options in this crazy POTS game, that any option will eventually, at some point throughout my day, result in POTS symptoms not allowing me to pass go, going straight to jail, not collecting 200$, and missing my turn of rolling the dice with a second chance for a different outcome in life aside from feeling controlled by POTS symptoms! Sometimes I ask myself who is winning this game, am I or is POTS? POTS seems to have the upper hand.

I have learned to play like a straight shooter by just playing the cards I have been dealt and hoping that my hand ends up being higher than the card hand of POTS. To once again capture the fullness of life, to not be cheated by symptoms, not to lose my turn in having the social opportunity of meeting someone, having children without sending my heart into a 500 beat tachyarrhythmia, work full-time with all it?s physical demands, to sometimes be able to go go-go-go-go and not end up feeling sick from it, to ultimately conquer, win, and knock POTS off the game board of life! So you ask, ?What is POTS to you?? - POTS is a head-trip board game that I must win!

Life has greatly changed since POTS. It?s always planning out the day for two, for me and for me with POTS. Some days I feel like I can escape POTS symptoms, to be my own entity, eliminating the feeling that POTS defines who I am and what I do. Other day?s the POTS symptoms annoyingly goes with me, wherever I go with whatever I do - to work, to school, to social gatherings. These days must be analogous to caring for a child while ??on-the-go?? in having to pack up all the emergency anti-cry/anti-boredom essentials of a diaper bag stuffed full of toys, cherrio?s, and coloring books to pre-occupy the child all while the guardian try?s to accomplish what needs to be accomplished with their agenda. Planning for POTS when symptomatic is similar. I must carry the emergency anti-symptom essentials both physically in-hand and cognitively in-mind of things that will hush up and keep pre-occupied the easily tempered POTS symptoms while I try and accomplish and carry out my agenda without feeling symptomatic. Yup, these essentials to include, but not limited to, salt packets, bottle upon bottle of water, making sure that wherever I go there is somewhere to sit down if need be, anti-nausea meds so I don?t puke on myself, beta blocker meds so my heart doesn?t run off ahead of me, and compression stockings so I don?t float away by the blood flood pooling in my legs. It?s anything and everything to try and hush up and distract the annoying, screaming, life-altering and temper tantrum symptoms of POTS so I can have my life.

So you ask, ?What is POTS to you?? POTS, as you have learned thus far, is not only a falsified identity of being an anorexic drug addict and also a head trip board game, but also a full-time babysitting job.

Now here is something to baffle you, now that I have spent analogy after analogy in trying to help you understand what going through life with POTS is like, how much of an annoyance it is, and how life altering it is, figure this one out. A war sometimes wages in my mind. It?s a war between wanting to be free from this affliction or to remain a prisoner of it. This may sound crazy at first, since this letter seems anything but a desire to live out life like this for the rest of my life, but let me explain. Fear is found in both options, to remain held captive or to be free from POTS prison, the latter to seemingly become the goal. So why is there hesitation, you ask?

A prisoner must conform to the environment they are forced to reside, in all that it encompasses. Nothing they know of it is familiar ground, so they must train themselves emotionally, mentally, and physically to adapt to these new surroundings, new people, new ways of having to live life.

Before POTS, I LIVED life. After getting POTS, I feel like it?s a voluntary effort some days to just GET THROUGH life. Adapt and adjust. Call it survival mode. When the prisoner is finally released, after five or six years from their transitioned adaptation, when survival mode is no longer needed or required, when finally they are free to live their life again and not just find a way to get through life, freedom they now fear their prison. Why you might ask? Because the life they once knew is now something very since being incarcerated for so long. Things have changed from what they once knew them to be like, people have changed from how they once were, the environment has changed from how they originally saw it. Everything they see and know has changed and they don?t know how to life works for them anymore.

POTS has changed how I have had to live/view life. It?s been so long since how I once lived life and knew life to be, free from symptoms, that I have forgotten what it is like to live life without them. I went from being a fairly active, always on the go, free to do as I willed person to being shackled, chained, and cuffed. The past five years I have had to adapt, conform, and surrender to what has ailed me physically, my prison, all while life has gone on without me.

My whole life has turned upside down because of POTS symptoms and so I have been forced to either stand on my head to try and see life right side up again, the way I have always known it to look like and play out for me, or to look at life through distorted view, with everything upside down (funny I thought of this analogy since POTS is all about gravity, wonder why standing on my head hasn?t worked the past five years! Haha).

This POTS prison has forced me to redefine my understanding of how life was is supposed to play out for a 19, 20, 21, 22, 23, and now 24-year old woman. After awhile though, I have learned how to somewhat adjust, just as a prisoner does to unfamiliar surroundings, to their ?new? life (whether temporary or permanent, for me hopefully temporary). I have never gotten completely comfortable with how I have had to change living my life, but I have learned to adapt for the most part.

I wonder sometimes if me having to change how I live out my life, to accommodate for this condition, that when POTS leaves if I?ll be able to adjust back to what life once was for me. What if dealing with POTS has become such a forced way of how I have had to live that I won?t know how life works without it? Kind of like the prisoner to his cell, how does life work after spending so many years having to redefine your life by your situation/circumstance/surrounding, whether it be an actual jail cell or changing life up to how you once lived it to accommodate for an annoying chronic medical condition?

Some people say that once you have learned how to ride a bike that you?ll never forget how to, even if it?s been years since the first time you have ridden. When you go to get back on the back, it?ll be like you never had gotten off of it. Some days it feels like I have forgotten how I once was able to live life before getting POTS, without the restrictions, without the special modifications and I wonder, once POTS is gone, if life I will have to re-learn or if I can just pick it up again, like I had never stopped living the way I once had.

So you ask "What is POTS to you"? POTS is a prison that I have had to live in for so long that I have forgotten what it's like outside of barred windows and double pane plexi glass. Has life the way I once knew it to be, the way I once lived it gone on without me? When I am released from this prison I fear that life the way I once lived it/knew it to be will no longer meet back up with me like a long lost friend, but instead a complete and total stranger.

[labas_2u@shaw.ca]

OMG cardiatec!!

You wrote my feelings exactly!!!

Beautifully written..... I saw myself there and cried.

Maggs

[SunsetParadise49]

Great job writing Cardiatec!

[shannon]

Thanks for sharing that. I could really relate to what you were saying!

Shannon

[corina]

cardiactec,

thank you for sharing this, you let us in into your life. the things you describe go for lot of us, we have lost so very much and all we "gained" is a lot of people/doctors misunderstanding.

for me dysautonomia is also very much struggling to become friends with myself again. i am now so very different than how i was, that it?s very difficult to find peace with myself.

i wish you wisdom and strength and hope you will get a life that you can deal with!

corina

[bttrflyamby1981]

That was very well written! I too can relate and am so glad you shared it with us.

Amber

[cardiactec]

thanks to all of you for your words of encouragement and praise. i knew posting this letter here was the way to go because you all know exactly what i'm talking about .

i have showed the letter to a couple people that i work with and they werent too sure what to say, i think most have been shocked that POTS effects me this much (they only see me 20 hours a week at work, they dont see me when i get out of work and crash HARD, even from just work 4 hour shifts sometimes)...........heh, one person said she thought i was a little too "dramatic" for the "prison" part of the letter. she is a wonderful person, really, but she doesnt understand what i have to deal with day in and day out. if she walked in my shoes, she would think a prison to not even be the place or word to compare to what is faced with a chronic illness, specifically for us autonomic dysfunction.

[Guest dionna]

i havent read it all yet but so far into my reading is almost exactly how i feel as well. wonderful piece.

dionna