Monday, April 26, 2010

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)

Wednesday, April 21, 2010

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! 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!

Friday, April 9, 2010

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,

Tuesday, April 6, 2010

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,