Couch potato

This blog is dedicated to all those couch potatoes out there. I don't believe any of us with POTS wanted or chose this lifestyle, it was kind of placed on our plates and I for one have begrudgingly accepted what I've been served. I don't believe a single person with chronic illness wakes up in the morning and says, hey looking forward to nausea, dizziness and fatigue today, I can't wait to lay around in bed all day. I can't remember a day before my diagnosis with POTS that I spent a single day in bed unless I was very ill. I truly feel less than a couch potato, more like a potato skin. I feel like I'm empty, potato less, purposeless and empty.


The past two weeks I've been struggling with the emotional side effects of this disease. Being chronically ill has put me on self preservation mode. I have a tendency to experience a negative symptom from an activity, and then that activity is crossed off the list, never to be tried again. Well, before I knew it, almost everything I like or want to do has been crossed off the list. I'm doing very little, and have begun to become quite lethargic with my life. Here's a small sample of the things I have crossed off the list:

• Concerts: The loudness of the music causes an adrenaline rush, which then triggers brachycardia, shortness of breath and dizziness.


• Shopping: Unless I can find someone to go with me to push my wheelchair, I can't walk for long periods of time.


• Outdoor activities: If the temperature is over 75 degrees, I'll pass out.


• Night activities: I'm usually too pooped after 8:00

The list could go on, but I'm sure you get the gist of it. I'm beginning to come up with reasons not to do things I haven't tried yet, because I'm sure it will trigger some POTS symptom. To be honest part of me doesn't want to find out that I can't do this new thing either. Just one more thing to put on my can't do list. I'm very aware that I have allowed this disease to imprison me.

I became very aware of my lethargic behavior yesterday. I was playing computer games, recovering from my trip to the grocery store. My family was coming and going to different activities. Being Memorial day weekend many of my friends have special plans. I began feeling sorry for myself, oh poor me, I can't go anywhere or do anything. This disease is stealing my life from me, boo-hoo-hoo. I want to go to the beach, listen to the ocean calm my soul, see God's handiwork and feel the sand between my toes. I had a list for not going; the walk from the parking lot to the shore will poop me out, it might be too warm, I probably should go with someone, what if I become symptomatic and I'm by myself, my POTS symptoms will probably get in the way of my enjoyment, blah, blah, blah! Excuse after excuse. At that moment I lost it a bit, I decided to go to the beach by myself. Who cares if something happens, at least I'll be doing something I love. What I discovered was that I needed that beach trip to knock some sense in me, to at least try to do the things I love, and if I become symptomatic, so be it. Better to try something and MAYBE fail, than to not try at all. I'm not saying my trip to the beach was symptom free, brachycardia, nausea and dizziness were definitely there, but I would have experienced those symptoms at home. I went to the beach, I had a good time, and I survived! I was so afraid of becoming symptomatic, that I stopped living my life at all. I'm going to feel nauseous, dizzy, fatigued, tired and short of breath at home anyway, why not do the things I love feeling yucky. As Nike says, "Just do it!"

Still inspired,

Michele

Random Facts

Well I've recently been awarded the Sugar Doll Award from two of my favorite bloggers, Michelle bobisdysautonomia.blogspot.com and Miranda mirandapowell.blogspot.com, I am truly honored to be recognized by two such brave and talented woman. Upon receiving this acknowledgement I'm suppose to write 10 random facts about myself in order for my readers to get to know me a little more personally. Or maybe understand the madness behind the writing.

Fact one: Those of you who have been reading my blog since the beginning know I love clothes, and love to shop. I may take my love of clothing a bit to far, I even worry about whether my pajamas match. It's a good thing that the panties labeled with the days on them aren't still popular, I would never be caught wearing Sunday's underwear on Friday (what would people think?). I wasn't always so fashion conscious in my youth though. My favorite Summertime outfits consisted of matching terry cloth shorts and shirts. For some strange reason I thought the shorts looked much better pulled all the way up to my armpits. Now I will give myself some credit, I was a beanpole, and I guess I thought if I pulled them up to my armpits, it would take them longer to slip down over my nonexistent butt!

Fact two: I didn't always want to be a teacher, in fact I hated playing school as a child, it meant I would have to write, which I hated doing (funny how things change). My big dream was to be an airline stewardess. Traveling to distant lands, romances with strangers, flying period was the ultimate high. My mom had a brilliant plan to help me with this glamorous career choice. When I graduated from high school she was going to send me to Germany to attend a Frauschule (which is a school back in the day, that teaches young woman how to be good housewives). That sounds so archaic now, I can't believe I was on board with this idea, I guess I'd do anything for my dream job (which I now believe is just a glamorized waitress). The purpose of this was that I would become fluent in German so that I could apply for a job at Lufthansa.

Fact three: My thoughts on marriage were quite unique. My big dream when I was in college was to marry a pastor. Being a pastors wife sounded amazing with me. I thought I would be perfect, I loved my God and His church. I loved to serve, I'm a pretty good cook for the many potlucks I'd be going to, being there to support my pastor husband while he supported his congregation sounded amazing. I didn't realize what a sacrificial life a wife of a pastor has, I'm glad God didn't grant that prayer, though it still sounds pretty cool. I did end up getting married, but he probably is the complete opposite to a pastor as you can get. For some silly reason I followed my hormones and not my smart brain. Though my marriage did last 23 years, 23 years of love, pain and deep suffering.

Fact four: My music choices are almost as random as I am. As a preteen and young teen I loved the Partridge Family. I swooned every time I heard David Cassidy sing "I think I love you". I liked BTO, Peter Frampton and Pink Floyd. But I have to admit I really, really loved the Go-go's, trying to dress like them, sing like them (I had a unrealistic biased opinion of my singing talents), I just wanted to be a Go-go! As a grown up, I mostly listen to pop Christian music.

Fact Five: I love to dance, though I have no talent for it. In my college years disco was quite popular, I would spend great quantities of time practicing my dance moves with my two best friends Bruce and Victor! We would take turns partnering like John Travolta and Karen Gorney, and then trying to do the hustle until we fell on the floor exhausted. Later in life, being a parent of teens, I would walk by their bedrooms and their music would wake up the inner dance diva in me, and my uncontrollable urge to dance would take over and I'd allow the dance diva to do her thing. Unfortunately my daughter considered my dancing entertaining in a not-so-complementary way, and my son would slam his door in utter embarrassment. Lucky for them the dance diva in me only comes out on rare occasions.

Fact six: I taste and smell color, the technical term is synethesia. I can see color when I'm eating food, and the color of the same food can change for many reasons. For example, a red delicious apple tastes yellow/brown, but the color I taste would depend on it's ripeness and variety. I discovered I had this special talent when a friend offered me some avocados from her tree, and I turned her down because they tasted brown. She asked me what I meant by tasting brown, and I told her that when I taste avocados I see brown when I eat them. She asked if other foods tasted like other colors and I said yes. It was then that I realized that everyone didn't tasted food in color.

Fact seven: I have had several dreams (maybe nightmares would be a better description) come true. I dream of people getting into accidents or being injured at work and that day the person I dreamed about has been injured in the exact same way as I dreamed. Often I haven't seen or thought of these people in years. It doesn't happen often, but I often question the validity of my dream until after reality has struck.

Fact eight: If I had unlimited time, energy and financial resources, I would go back to school and become a doctor. I have always had this inner sense of how my body works, what's wrong with me, and where the problems are. I would love to study and do on research myself, to get a deeper understanding of dysautonomia and how to cure it.

Fact nine: I was on a float once in a local parade. I wasn't chosen for any special beauty or talent, I was there because my precious little sister has cerebral palsy and they wanted her on the Elks club float. The Elks were sponsoring my sister, they paid for her crutches and anything else she needed that insurance didn't cover. The Elks club is filled with many kind and considerate men and woman who truly want to help those in need.

Fact ten: I'm really quite boring, and I can't think of any more random facts.

It's time to pass the baton or Sugar Doll award, and the Sugar doll award goes to (drum roll please) Laura Dysauto for her blog
The POTS ran away with my SPOONS. She shares her personal experiences with dysautonomia in a way that is easy to relate to.

Always inspired,
Michele

The Fishbowl

I'm sure many of you remember that first fish you won at a local carnival. I remember my first fish very well, I was eleven and at the carnival with a few of my girlfriends. I remember the booth with all the fishbowls with fish in them in the middle of the booth. To win a fish all you had to do was hand the man a dollar and he gave you 3 ping-pong balls. It was your job to throw the ping-pong ball and make it land into a bowl. Sounds pretty easy until you try it. Usually the ball hits the side of a bowl and lands on the floor somewhere. I remember it only took me three dollars to win my beloved fish (what a money maker for the carnies, they probably got 100 fish for a dollar). Now that I have my fish, I push my brain to come up with a creative name, and name her Goldie (wow, that was a push LOL). I begin carrying Goldie around the carnival grounds, and realize I'm unable to go on any more rides for fear of jeopardizing Goldie's life (she's already become a burden within an hour), so I take off for the cotton candy machine and head for home. When I get home I realize I don't have a bowl for Goldie, and am thankful I didn't spend all my carnival money. I take off to the corner fish store, and four dollars later I have a bowl, some rocks and some fish food for Goldie.

The first week, Goldie's is living it up at my house, she has a clean bowl, she's fed every day , and I talk to her whenever I'm in my room. Week two, Goldie is fed every day, I rarely say a word to her, and she's lucky if her bowl is cleaned once a week. Week three, I think maybe if I feed her less she won't poop so much, and her bowl won't need to be cleaned as much. Week four and a half, I wake up and think "what's that smell?", I look around the room, and notice Goldie's bowl is a greenish brown, and I can barely see Goldie and she's struggling to breath. I quickly clean the bowl, feel slightly guilty for not caring for my fish, and do a little better for a couple of days. By week five, the bowl is stinky and brown, and I'm thinking to myself, DIE Goldie, DIE! Finally after several weeks of abuse, Goldie goes to the big ocean in the sky via my toilet.

Lately I've given some thought to my poor goldfish's life, and thinking I might be reaping what I have sown when it comes to my treatment of Goldie. Lately I've been feeling like a fish in a bowl, watching the world around me living and going on with life.

Recently I went on my typical trip to the grocery store, and as normal, by the time I was done, I was exhausted. Behind me was a sweet elderly woman with a cane. My heart went out to a fellow sufferer of a body that was no longer working at 100%. By the time I was done unloading my cart, my body was finished. I knew I would barely have the energy to walk out of that store and load my twelve bags of groceries into my car. I slowly walk around to the side of my car, when I see the sweet lady with the cane walking to her car. She opens her trunk and gingerly unloads her cart, and is backing quickly out of her parking spot and driving down the street. I guess she had me fooled, I'm sure she could have taken me down with a gentle push of her cane. I finish loading my car, and drag myself to the driver seat, close the door, close my eyes, and try to will my heartbeat to slow down, to ease my gasping for air, to stop the world from spinning, and pray that I have the strength to be able to place my hands on the steering wheel so that I will be able to drive myself home before my frozen goods begin to melt. As my heart slows down and my breathing eases up, I slowly open my eyes trying to focus on the people and things outside my car windshield. As I sat there watching, I realized that the world around me was alive and busy. People coming and going without a clue that I was sitting in my car barely able to function. I felt so separate, and almost not a part of this world around me.

It's the same for me at home, I watch my children come and go, watch the people outside walking the neighborhood, hear about the things people do on the weekends, read about the fun things people are doing on face book, and feel like that fish in the bowl, seeing but not being a part of it.

At church, I watch the people come and go, catching up and sharing, but I can no longer participate in church activities so I've lost the connection, it's work for me to go from person to person. I now feel like a stranger to these friends I use to know so many precious details of their lives. I feel like I must sound like a broken record to them, my life is the same, I'm still sick, I still am blessed to work, and I still have an amazing family. When I do get the chance to talk to someone, I ask about how they are doing , but I seem to be getting a pat answer from many, I'm sure I must be doing something to get the quick answers, probably the fact that I'm not there and not connected.

Now I'm sure some of you are thinking jump out of the bowl and get out there and live. I guess part of the problem with that is fear, there are so many things that can trigger a crash of my symptoms that I don't want to pay for it later. I'm also so tired on the weekends after working all week, that I have practically no energy to expend on extra curricular activities. It feels like the last hospital visit took more than a few days and a chunk of change, it feels like a part of me was left in that lost and found room they left me in. I know I need to work harder at telling others what I need, but I just don't have the energy to do that. Part of me is becoming compliant to this life of solitude, but the other part of me screams for my old life, my busy others filled life. I wish this blog could be more inspiring for those who struggle with the same problem, but I haven't found the answer to this one yet, when I do, I'm sure to blog about it.

Desiring to inspire,
Michele

Mystery Rooms of the ER

I had no idea the hospital had secret rooms to place patients in when they didn't know what to do with them. If you're unfortunate enough to be placed in one of these rooms, you may be untraceable for unknown periods of time, and no-one can hear you scream (scary laugh, ha-ha-ha-ha).

For those of you with POTS, several thoughts go through your mind as you are heading to the ER: I'm scared because my POTS symptoms are out of control, do I have my list of medications & doctors, will the staff know what to do once I get there, and finally will anyone there know what POTS or dysautonomia is?

My POTS symptoms were out of control, and my doctor couldn't see me or talk to me, so the decision was made to go to the ER, which is the last place on earth I'd choose to spend a nice sunny afternoon. I arrive at the ER entrance, where a greeter quickly swoops me up in my wheelchair (I begin to think this might be the beginning of a positive ER trip)and he drops me off alone in the admitting line (well maybe not). The admissions personal ask "Why are you here?", and wheezing from being out of breath I try to tell them "tachycardia, shortness of breath blah, blah, blah.", they give me a confused look and ask "What was that again?" I bow my head in defeat, take a few more breaths and try again. They finally get it, with a reply of NAME?... I don't have the energy or the oxygen to give her my name, so I hand her my ID. She calls a nurse over, and the nurse quickly wheels me over to a space in the triage area recently set up in the usually full waiting room. The nurse takes my pulse and blood pressure, my bp is skyrocketing, and my heart rate is dropping. I tell her I have dysautonomia, and she responds "You have what?", I try to explain, but I can no longer speak so the nurse decides I need an EKG, and wheels me to the EKG room.

Now for a little of my Er's history. Spending many hours there, with my type 1 diabetic daughter, I know the place rather well. We're on a first name basis with many of the nurses on staff. But on Tuesday they made a few changes, the ER waiting room was split in half, half remained waiting room and the other half became a triage area. The room they call the EKG room was the sound proof room they brought families into if they had to deliver bad news. I was later told that the triage center was less than a week old!

The nurse rolls me into the EKG room (formerly soundproof bad news room), I lay down on a gurney, the nurse rolls my wheelchair to the far corner of the room (so there's no way possible for me to escape, creepy laugh ha-ha-ha-ha), she tells me the EKG tech will be in soon, and leaves me alone in the room! As I'm laying there I'm experiencing chest pains, I'm dizzy from being short of breath, my head feels like it's about to explode, and I'm overcome with nausea, and no-one in this condition should be left alone in a room for any amount of time! I wait, and wait, and wait, and no EKG tech! After quite a long time the nurse comes back, peeks her head in, and quickly asks if I have had my EKG, I barely said no, and she was out the door. So again, wait, wait, wait, finally after almost an hour the EKG tech comes in looking for Michael Miguel. I tell him I'm the only one in the room, (now remember I'm experiencing brain fog, so my brain is running a bit slow) tick, tick, tick, oh I scream, are you looking for Michele McGough? Bingo, we have a match. EKG tech tells me he's been looking for me for over a 1/2 hour, and runs my EKG, he wheels me out of the room, where my name is being called out, I call "here", and the nurse asks me "where have you been, I have been looking for you for over a 1/2 an hour!, didn't you hear the pages?", "um, well no, I've been in the EKG room.", "the what?" the nurse replies, "THE EKG ROOM!" which only comes out as a whisper (but I am beginning to find humor in this). She rolls me to the registration desk, and informs me that she has a few questions for me, and I ask for my daughter, because I know I don't have the energy or oxygen to answer her questions. She goes to the waiting room where my daughter comes in a bit frazzled and ask "where have you been we've been looking for you for over a 1/2 hour!" I begin to giggle and my daughter gives me that knowing look of "you've got a story to tell", but we both want to get things going so my daughter asks what they need to know (I don't know what I would do without my precious daughter!). With the registration process over, a nurse comes in and tells me "I have been looking for you for over a 1/2 hour to take your blood and run an x-ray", with a smile I tell her "they left me alone in the EKG room for over an hour." she apologizes and tells me the triage area has only been running for less than a week, she takes my blood, and wheels me over to the x-ray department. While waiting we hear a woman screaming (in my head I'm thinking she just got some really bad news and I begin to pray), then we see 6 security guards running to a room where we heard the screaming, a few minutes later a social worker tells us that the woman was high on drugs and was bi-polar, wow, I got that one wrong! The x-ray tech comes out and informs me that she has been waiting for me for over a 1/2 hour, I chuckle and tell her that the hospital misplaced me, and she gives me a look like I'm a bit off my rocker (she obviously doesn't get the humor), not wanting her to call the six security guards on me, I put on my serious face and explain that I was in the EKG room, "the what room?". I'm getting a bit tired of explaining, so I redirect her to the task at hand. X-ray done, the nurse fetches me, I'm thinking finally I'm going to be placed in a room!

Psych! I'm wheeled into a small waiting room in the far corner of the hospital, with three other tired and distressed looking patients and their families. I announce to my daughter, "oh... this must be the lost and found room!", and the whole room erupts in laughter. I guess they must have been misplaced as well. We realize this is the transitional waiting room. As each patient is called out of the room we cheer them on and give them well wishes. Finally it's my turn, and I'm wheeled off to a room, woohoo!

I'm sharing a room with another patient, and I'm hooked up to various monitors, and asked "what brings you to the ER?" and I'm thinking isn't that in a chart somewhere? I tell him the same thing I've told a half a dozen other nurses, and the nurse says "you have what?" I answer, "dysautonomia", "could you spell that, never heard of it". Off he goes not to return, I guess I scared him off. He finally returns and announces his shift is up and someone will be replacing him shortly. It's been hours, I need to pee, I haven't had anything to drink, and no-one has checked on me in a while. I see a passing employee, and ask them to find my nurse, and she announces briskly that she is my nurse! Well that was the last straw, I tell her what I need, she tells me she can't give me any water or fluids until a doctor approves it, I tell her I've been there for four hours with no water, which will make my condition worse, and she tells me there is nothing she can do, and a few hours without water isn't going to hurt me a bit. I ask to use the restroom, and to bring me a supervisor. The supervisor finally comes, I tell her about the EKG room, and the long wait, and lack of supervision, she apologizes, gives me excuses and leaves. A few minutes later my daughter and the family next to us are offered snacks and drinks (I guess she thinks a little food will make us forget about the terrible treatment), and the nurse becomes more attentive, hmmm... I wonder why?

After five hours of waiting a doctor finally comes in and asks, "Why did you come to the ER today?", I responded, "Didn't you look at my chart when you came in, I can barely breath, and I don't want to explain it again." He informs me that he did look at my chart, and I ask him if he knows what dysautonomia or POTS is, he tells me no, I demonstrate to him how my bp and heart rate change by positional changes. He looks a bit startled, and by then I'm gasping for breath, and I'm finally given oxygen. I ask him to call my neurologist, he agrees, and leaves. I'm left waiting for another hour, and when the doctor comes back he announces that my neurologist wants to admit me. Two hours later I'm settled in my room where a new medical nightmare awaits!

Still inspired,
(but not by the ER department)
Michele

Spiderman has nothing like this!

Spiderman, Superman, and the Hulk live life as average guys. Men you may or may not look twice at if they passed you in the street. But when danger confronts them, they quickly transform into superheros. The Hulk ripping through his rather thin tank, Spiderman pulling open his shirt to expose his spidy suit and Superman transforming discretely in the privacy of a phone booth. All three looking bigger than life and completely capable of facing any danger in front of them.

Well I have a little secret, I transform into something that's not quite a superhero, but feels super something. I call myself DysedGal. I too look like your average gal walking down the street, maybe slower than most, but surely pretty average looking. My super transformation doesn't need villains or catastrophes. It comes on quite suddenly and I'm sure if I were a real superhero, the transformation would feel identical.

I can feel the change begin slowly through my body like a gentle stream tingling slowly down each limb to my fingertips and toes. As I feel the tingling moving through my body, I can feel the strength leaving me like the sand on the shore being gently carried away to the ocean depths. My heart begins to pump erratically so hard and fast that it possibly could pound its way through my chest. My breath seams to quicken trying to catch up with my beating heart. My head becomes fuzzy, no longer able to produce a coherent thought, not even the ones that would protect my body or help alleviate the symptoms.

The transformation complete, but no superhero has been produced, just a super weak, tired, frightened body that can barely move a limb. I've been Dysed! After the symptoms that feel like I should be transforming into something amazing, I'm left weaker than I started off, not fair! DysedGal is not a fair exchange. Where's my cool superhero suit, I want to fly, to leap tall buildings in a single bound. Where are my bulging muscles, or maybe a few curvaceous curves in just the right places! What about my x-ray vision (blurry eyesight doesn't count). And while I'm at it, those superheros always get the cute girl, where's my super hot manly man? I think I deserve my fair share of superpowers!

Hmmmm..no superhero, oh well, I only mention it because the feeling is so strong and so inhuman. It only takes a few seconds to go from semi-normal to a bowl of mush. I often refer to myself as a vampire because the changes often are connected with sun and heat, and it does feel like a chemical change is happening, a bubbling or simmering, it is so bazaar. Well I guess the closest I get to a superhero is my TV and my DVD player.

Maybe I'm not meant to be the rescuer, I just need to depend on the only one who can rescue me from myself! I've never made a single POTS transformation alone, I'm truly thankful to have God on my side through all this.

DysedGal signing out!

Spa Treatment

The sun is shining, the birds are singing and the signs of Spring are all around me. It's one of my favorite times of the year. It's time to add to my Spring wardrobe, pull out my shorts, and skirts, and get out my strappy sandals. I look down at my feet and realize my feet have been ignored for nearly six months! If it weren't for the occasional clipping to keep my toenails from pocking holes through my socks and stockings, my nails would easily resemble my dog Elmo's (curved and scratching the floor as I walk). It's time to head to my favorite nail salon for a pedicure.

I'm totally prepared for my spa experience, a good book, my ipod, chai latte tea and some salty snacks. I can't wait! As I'm walking into the salon, it's obvious to anyone looking my way that I am armed and ready for a relaxing morning at the spa.

I'm immediately greeted by the salon manager and instructed to pick out my nail color as she fills the spa tub. I pick a hot pink to go with my cheerful mood and sit in my chair. The salon manager adjusts my chair as I'm beginning to relax, and poof, she pushes the massage button on the chair and these huge massage balls begin shaking and rolling down my back. I am so startled that I jump and my book flies into the tub. Every eye in the spa is now staring at me as the manager tries to save my book, which is now soaking wet at the bottom of the tub. We decide the book has been read for the last time and it's tossed into the trash. The sweet manager hands me a magazine and informs me that my tub is ready. I slowly ease my feet into the steaming tub only to quickly pull them out because the tub is so hot it could only be used to poach eggs! The manager kindly cools the tub, and I give it another try, ummmm just right!

Finally, I can relax, chai in my hand, my favorite music gently uplifting my spirits and a fashion magazine listing the top 5 must haves for my spring wardrobe! I'm in heaven. It couldn't have been but a few minutes into my heavenly bliss when I noticed a throbbing in my feet and toes, I look down and notice my feet have turned a lovely shade of purple! Reality sinks back in and so does the dysautonomia symptoms. I pull my feet out of the tub and rest them on the edge. My pedicure lady comes and asks if there is something wrong with the water temperature, I just explain that my feet needed a break. She gives me an odd look and lets me know that my feet need a good soaking before she can start. I nod and reluctantly return my feet into the tub. After a few more agonizing minutes of soaking, my pedicure lady rescues my feet from the tub of doom. As she pulls my foot from the soaking tub her eyes pop open in surprise, and she informs me that my foot is purple! I giggle and tell her that is normal for me, she shakes her head and moves on to the pedicure.

The pedicure begins, and so does my motivation to try to relax again. I'm enjoying the skin care section of the magazine, when suddenly my feet inform me that they are under attack by the pedi lady sawing the bottom of my feet with a sander! My body begins to tense up as I try to endure this painful experience, and my pedicurist blissfully continues the sanding process. As she sands away, I have grabbed the arm rests of my chair in the same way that I do when I'm at the dentists office and I'm getting my tooth drilled. The lady in the next chair is eyeing me as if I'm crazy to not be enjoying this relaxing experience, and I start to feel like a failure at something as simple as relaxing. As I look around the salon I envy those woman resting peacefully as they are getting the full spa experience, and I chuckle to myself as I realize I am the only one tenser than a cat in a room full of rocking chairs. I then begin to give myself a pep talk to try to endure the torture for just one more minute! I'm no longer able to take the discomfort, and I pull my foot away, and the pedicurist laughs and says "does that tickle?" (ARE YOU KIDDING ME?), I frown and gently tell her that she's hurting me, so she stops and begins on my other foot. My body is just starting to relax again as she meticulously works on beautifying my other foot. Then my foot is being tortured by the sander again, and I pull my foot away. Again I try to explain that the sanding hurts the bottom of my foot, and she stops, frowns and places my foot back in the tub. She then begins working on my toes, and tells me my toenails are really soft, I again re-assure her that this is normal for me, and she continues.

It's time for the massage part of the pedicure experience. My pedi lady begins rubbing on the lotion and asks me about the bruises on my legs, and again I inform her that it's normal for me and not to worry. I'm beginning to think maybe this woman should be a doctor instead of a pedicurist, she's much more observant than my doctor is. She begins to rub in the lotion on my legs, and starts kneading my calves with her tiny fingers, and they feel as if they are being attacked by tiny paint ball pellets. The pain of the massage is more than I can handle, so I kindly ask her to please stop. I don't give her much of an explanation because there is a language barrier and I didn't think she would understand me (just so you know, my mom is German and didn't speak English when I was a child, and I totally respect those who come from other countries and try hard to learn our language, it's a challenging process and they have one language up on me, but the truth is it's still a bit difficult to communicate). By this time the manager is looking my way and begins shouting in Korean at my pedicurist. They argue back and forth for several minutes and finally the manager begins speaking to me. She is wondering what my pedicure lady is doing wrong! At this point the stress of this experience has finally come to a breaking point and I begin to laugh hysterically. Again all eyes in the salon are staring at me, and I don't care. After a few minutes I calm down, wipe away the tears of laughter rolling down my cheeks, and inform the manager of my dysautonomia and the symptoms that go with it. She finally nods in understanding, and begins translating our conversation to my pedicurist in Korean. When they are finished talking the pedicurist gives me a compassionate smile and begins painting my toenails.

I left the spa that day with hot pink nails with butterflies painted on them, and the need for a nap. Who would of thought that a trip to the spa would be so exhausting. I also learned a valuable lesson that day. I could have easily walked away from that experience deciding to never return again, but dysautonomia would have just took another fun experience away from me. I've learned to not be afraid to ask for what I need. I also need to allow for a bad first experience, so that I will have the opportunity to learn from that experience, and then know what I will need for the next time. Be strong, be persistent, and don't forget to laugh, life is too short to wallow in the negative.

Always inspired,
Michele

Insurance & Peace of mind...NOT!

My father use to tell me that "insurance gives a person peace of mind". Well, that was 20 years ago, and I don't believe the insurance companies are using that motto in their training sessions with their employees any more. I believe the new motto for insurance companies is "Insurance is a circus act". In my opinion insurance companies train their personnel to see how many hoops they can make a customer jump through to get the treatment he or she needs before they actually authorize treatment. I can imagine each customer service representative (CSR to save time) given a list of hoops, and after all hoops are achieved, the CSR is told to tell the customer that they didn't receive the faxed copies of hoop "X", please try again. I've also noticed that these CSR's seem fairly cheerful on the phone, but I guess I'd be happy too if I got paid to get nothing accomplished all day!

You may be wondering why I chose this topic to write about, well....yesterday was the day I gave myself to finally try to get the wheelchair my physician recommended for me 6 months ago. If you have read my past blogs you know that I have been procrastinating this task for emotional reasons, but I know having a wheelchair will improve my quality of life so I decided to push forward with it this week.

Yesterday morning I began the task. I grabbed my prescription for the wheelchair and made a call to the insurance company. I should have known there would be trouble when I heard the recording on the insurance companies intro message; "Please listen carefully, our options have recently changed, please choose from the following new options". Choosing an option is always a gamble because if you have chosen the wrong option, you have to hang up and start the process all over again. So I said a quick prayer and chose option 18; authorizations. Bingo, I chose the right option. I am then told to enter my id# and group # (which is in such fine print that I need to get a magnifying glass out to see the numbers), and then told that my communication may be recorded for quality assurance purposes, hmmmm.... After I punch in my id and group #, I say another prayer that I didn't make any mistakes, and then push the # sign. After 5 minutes of listening to obnoxious music and advertisements telling me how caring my insurance company is, a CSR comes on the line. She asks me again for my id # and group # and I begin to realize that I'm Alice and I've fallen down the rabbit hole, and Johnny Depp isn't there to meet me. I have fallen into a reality that only makes sense to the insurance company and my wonderful CSR. I'm asked to state my problem, I tell the CSR that my doctor has prescribed a wheelchair for me, and I need to know the procedures to get one. She then tells me I need to use an authorized medical supplier, and asks me for my state and area code. I wonder what information pops up when I give them my id# and group#. After she gives me a long list of cities that are 60 or more miles away, she finally comes across one that is in a neighboring city, and I take down the address and phone number. My arms and hands are now aching because holding the phone up to my ear is so painful, I decide to take a 5 minute break before I proceed any further.

Woohoo, I'm on my way, I make the phone call and get a recording, "We're sorry, the number you have just dialed is no longer in service, please blah, blah, blah.... Arggg, I call back the insurance company, and after spending 15 minutes pushing a million bazillion numbers, I'm back on the line with a CSR, a different one of course, so I tell her my story, and she gives me a web site to check. We say our goodbye's and I go on line. I'm told I need to register to get the information I need, so I follow the complicated list of info needed to become a registered member, and I am denied! I try 4 more times, and I'm told to call customer service. So I call the number, and again the animated phone service has me jumping the hoops needed to direct my call, and finally I'm given a CSR. I tell her my problem, she asks me for my id# and group # which I now have memorized. She types in the info, which she proceeds to tell me that her computer is running slow, and it may take a few minutes, chirp... chirp... chirp. Finally she is back on the line with a hmmm..., this is strange, you are not coming up, can you please hold...... CSR comes back and is wondering if I work for _____, I say yes, and she says oh, your group doesn't have access to this site, you need to go to another site to get your information. She gives me the site info, and wishes me good luck, which I know I'll be needing at this point in the game.

I go to the new site, and bingo, I'm able to log on and access the information I need. I find the only medical supplier in my area, and give them a call. I am told it is a rental company, and to bring in my prescription. I hang up the phone and realize that I need to start all over, because I do not want to rent a chair for what appears to be the rest of my life.

So I call the insurance company again, and after the may hoops I automatically jump through, I'm back on the line with a CSR (a different one than the first two). I tell her my problem, and she doesn't know what to do, and puts me on hold to ask a supervisor. I couldn't be the first person that insurance company has come across that needs a wheelchair permanently! The CSR gets back on the line and asks me what my doctor told me to do, now this was 6 months ago, and all I remember was him telling me he got one for his office at Sam's club for around $100.00, and that he would see me in 6 months. The CSR laughed, and told me that I needed to contact my doctor, because he is the one who needs to take care of it. Thank you for calling and have a nice day. I'm thinking to myself, are you sure, this is the doctor who recommended I go to Sam's club!

I look at my clock and was shocked that it said 11:55, I began this quest at 9:00. My doctor would be going to lunch in 5 minutes, and wouldn't be returning until 2:00. I would love to have a two hour lunch break! I was totally drained, and decided to wait for my next doctors visit (which is in a week), to complete this task. I am not up to jumping through a new rabbit hole in which my reality depends on a doctor who believes I can get a quality wheelchair for $100.00. I'd like to see him sit in it for 4 hours, or try pushing the wobbly wheels up a curve!

After spending hours on the phone and accomplishing nothing, I was drained and frustrate. I've learned through my experiences that things are easier when you're not alone. I called a friend who is familiar with the frustrations of the insurance companies circus hoops, and after ranting and raving to her I felt so much better. Even the yucky things in life are better when shared with a friend, thanks Von!

Back to my reality, Dysautonomia, my new normal.

Always inspired,
Michele