The Tilt Test Has Been Scheduled

English: Kirnu, a steel roller coaster in Linn...

 

I’m not ashamed, ever, to say how I feel. Obviously you all know that by now. I’m honest, sometimes too honest but writing gets my feelings out, the good, the bad and the ugly. The anxiety, the fear, the fibromyalgia symptoms and most lovingly, the food.

 

Because I had another collapse/fainting/black out episode/severely bruised my leg and had a huge bump on my head… I now have to have a series of tests. I keep telling all these stupid doctors that I am sure it is due to my low blood pressure. 85/60 wouldn’t you consider that as a cause?

I have salted my food, adding pretzels and potato chips and nothing seems to help. Doctors bug everyone about high blood pressure but as my internist always said, “Yeah, I have low blood pressure too, just sit up slowly and salt your food.” After twelve years do you think that’s been working? Apparently not. You were only interested in this now because I told you my rheumatologist had suggested an idea and would run it by my nephrologist. All of a sudden you wanted to get involved? Like you forgot I asked about this for the last twelve years??!!

Nothing like a little medical competition.

But still, they have to rule out everything else first. Gotta love the medical industry, schedule those tests, pay the bills, I’ll see you for seven minutes, kick you out at eight. Insurance number? Same address? Medications? The same, doesn’t matter, fill it out again, we know you were here yesterday. Rules are rules.

English: Blood pressure measurement.

As one of my favorite doctors, my nephrologist, put it you must have: “The Vomit Test.” Thanks Doc, not the right time to be friendly and casual even though I’m sure your intentions were honorable. I can’t even say the name of the test without feeling like I am going to throw-up. I am dreading this, although I admit, the nurse who is monitoring the test has probably seen it all. Actually, not really, I am dreading it more than anyone or anything.

I HATE the feeling of being nauseous, dizzy, off-balance, I have always called this test “The Dreaded Tilt Test” and so here we are. My cardiologist talked me into it and since his father (coincidentally) was my pediatrician growing up and because I like this dude I said I would do it. But NOT HAPPILY. (I can still cancel and I am considering this.)

I’m the nerd who has to take Dramamine for a long car ride or any ride in a boat. Those big cruise ship lines where they say you don’t feel a thing? Been there, done that and definitely needed a drug for anti-nausea. I HATE ROLLER COASTERS. Went on a baby roller coaster once and screamed my head off, never to be seen on a roller coaster again.

If I’m feeling nauseous just thinking about the test I can only imagine what the test itself is like when they swing me around from start to finish, in rapid movements, in different positions. They said it only lasts about thirty minutes. For me, this is thirty minutes in absolute hell. If I see this contraption and it is anything like the Disney tilt chairs or like a small roller coaster, I am out of there. Cancelling has never looked better. Help!

“The vomit test?” Really?

 

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My Fibro Fantasy, Rated X

I admit it, I fantasize, doesn’t everybody? There’s a possibility that tomorrow morning my fantasy could come true but most likely not. I’ve been here before. Several times and it hasn’t worked yet. It probably won’t ever work, it will never change, not in my life time.

FIBROMYALGIA

FIBROMYALGIA (Photo credit: *SHESHELL*)

I have an appointment with a new Rheumatologist that practices close to where I live. The doctor I am using is a wonderful doctor and a compassionate man, I have no complaints except he practices in the big city and it is a pain (literally and figuratively) in the ass to take public transportation to see him.

I can’t do it anymore, alone. I don’t have the stamina and energy  that I used to have. When did that go?  I used to drive my car to the train, walk up the flight of stairs to buy a ticket, down another flight of stairs to get to the train. After the ride I had to climb another flight of stairs and usually walk or take a taxi to the doctor’s office. It was a very long walk but I could do it. I could do that years ago but no longer. What changed?

English: The location of the nine paired tende...

English: The location of the nine paired tender points that comprise the 1990 American College of Rheumatology criteria for fibromyalgia. (Photo credit: Wikipedia)

I don’t know where or when my energy dissipated, perhaps it atrophied but I don’t have even 10 percent of it anymore.

Why the fantasy?

Because in the back of my teeny, tiny brain, somewhere in the bottom, left-handed corner, deep in the middle of the 36th quadrant, 76 degrees counter-clockwise there is a dot of hope that THIS doctor will help me. That SHE will jump up from behind her leather chair and wooden desk and exclaim “Oh NO!! You have been misdiagnosed. You do NOT have Fibromyalgia, you have a rare disease called Tortellini Soupadejour, highly treatable, all you need to do is take one small pill every morning, no side effects.You will be cured in 3-5 days, Congratulations!

At that point I would burst into tears, hug her and my husband and feel faint with relief.

That’s the fantasy part.

I want that so badly that I can taste it. I want my old life back. Before Fibromyalgia. Not this crappy piece of shit. Yes, I appreciate it’s not life-threatening, truly, but to hurt every day and night, to have NO energy is no fun either. I’ve also gotten to the point where I don’t care what other people think; I know what’s true and my Fibro Facebook Friends know.That’s all I care about now.

All I want to do tonight is cry. No, don’t feel bad for me, that just makes it worse. Besides, if I told you how I really felt, I would be holding you up for an hour. You know that, just acknowledge it and move on. I hate pity parties and if I want pity, believe me, I will give myself the pity party I deserve. I don’t want pity from anyone else, but thanks.

I want to scream at the world, I want to lash out at nice people who ask me, with hope, how I am feeling? I’ve decided on just saying “fine.” If I was honest it would take an hour and people would get bored and probably wouldn’t believe me anyway. My true friends can see it on my face or hear it in my voice, over the phone even.

All they need to see is a glimpse of me, a catch in my voice, generally my friends are like me, sensitive, compassionate, at least most of them.

Unicorn

Unicorn (Photo credit: scorpiorules58)

I am NOT expecting any miracle tomorrow, I know everything will be the same. She is just easier to get to, I don’t need my husband to drive me, I can get there on my own. The bloody diagnosis will be the same, I may burst into tears but not because I have a new diagnosis but because I had a speck of hope which was the stupidest thing to have, ever and the worst part? I knew that all along.

 

 

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ramblings from a tired, overwhelmed dizzy girl

Brain scanning technology is quickly approachi...

Brain scanning technology is quickly approaching levels of detail that will have serious implications (Photo credit: Wikipedia)

i’ve hunkered down, too tired, overwhelmed to care about anything, just want to lie down quietly and recover. recover just from the world of medicine and tests and bad vibrations all around me and doctors who make me cry and don’t even acknowledge it because they frankly don’t care, it’s not their job. i thought the younger doctors had been taught differently but no, not yet. sad statement for people in the medical world, in my medical world. i’m tired, so tired that my arms can barely reach the keyboards and my fingers click the keyboard automatically.

i still live in fear of the balance test i had two days ago, alone in this capsule-like, completely dark, dark what? it wasn’t a room or a cubicle it was literally like a big capsule whose black door slid open until you were seated belted in and then everything was completely black. you could hear a woman’s voice telling you what to do, to focus on the red lines or the black keys or the white keys as i was tilted and spun like the nightmare of a scary amusement park that i shy away from. this was one living nightmare and mere will to figure out this problem and self control made me complete that test, it lasted at least over an hour and then it spun me quickly and i had to hold my stomach in order not to get sick. that was just the first part.

there was one lucid thought that popped into my brain that said being imbalalnced and using a pink cane is better than what i was being subjected too but i couldn’t stop and start the test, it had to be done all at once. so after the darkened, claustrophobic capsule i was led by the arm to another room where i could lie down with heavy glasses on my face and again, the room was pitch black. again i had to follow red dots, first slowly than quickly and talk to the tester to keep my brain active and say things like a boys name that starts with v is victor, a boys name that starts with b is bob, a boy’s name that starts with g is glen…you get the idea. more darkness, a different position, i had to fall back, the trust game and i did not trust have learned not to trust any physican but again, i was stuck so here i was in the darkened room having to quickly twist my neck, first left and then right, feeling my muscles tense and then flop on my back trusting nobody but not having a choice.

my only strength coming from the fact that i need to find out where my imbalance is coming from, so i can get rid of the cane and feel more confident and i am sure they will suggest occupational or physical therapy after they get the results of the cat scan or mri or whatever they are scanning my brain, once again, and i will be tempted not to go to the place, which immediately as you arrive, smells like an old hospital smell which turns me off, and flips my stomach over immediately.

i can’t go on like this.

And Now I Shake

ECG complex.

ECG complex. (Photo credit: Wikipedia)

For the last six weeks I’ve felt light-headed; I’ve often brought this up to my internist and she has always said that it’s my low blood pressure ( 80/60.) “Salt your food” she murmurs, “stand up slowly from a seated position.” Then she adds: “That happens to me too!!” (Now I’m SURE we can be best friends because we have so much in common.) My husband insists that it has been happening more often and he has nagged me to see my doctor for a few weeks now, I’ve refused.

Yesterday I had an annual physical with my gynecologist who I like but totally FORGOT that she’s a worry wart like I used to be. Notice the PAST tense. I casually asked her if she thought I needed to see my internist about this small issue. She said “yes” and “that it might be a problem with my heart “valve.” The only “v” word I expected to hear from her was “vagina”( if there are any guys reading now is your opportunity to run) valve did not make me happy. I finally confessed to my husband, tried not to look at his smug face and called to set up an appointment.

I described feeling light-headed, having to bend my head down to prevent fainting, feeling very warm, getting a massive headache but never passing out. I could reach a chair or a bed and sit down and I’d be fine in a few minutes. It never happened when driving and obviously if I felt weak, I wouldn’t go out. It did happen going up or down stairs but I always held on to the banister. It was NOT, in my estimation, dangerous.

Now that I had conceded, a nurse gave me an EKG which was perfect with the oddest exception. My whole body started shaking. Once or twice lately I have noticed that my body starts shaking uncontrollably and I can’t stop it. I have asked my husband if he could see it and he has always said “no.” I think it’s one of those “guy” things. The nurse noticed it right away, I’m sure a best friend could as well.

So now, I could add “shaking” to my long list of maladies. Along with Fibromyalgia, almost passing out, Thyroid disease, Auto-Immune disease of the thyroid,  impaired hearing, I shook. I felt like one of those bobble heads except it wasn’t just my head that bobbled, it was my body wobbling. A nurse took five or six vials of blood and then the doctor told me (wait for it…) I had to go to the cardiologist for an echocardiogram and even worse, a stress test. No, No, No! Ugh, this is sweat and embarrassment  in front of others and I hate that kind of stuff. I gave my husband the evil eye, actually two evil eyes. They scheduled me in six weeks, obviously not a crisis situation to them (Thanks, honey!)

My doctor used this new phrase at least five times during my seven minute visit: “due diligence. In my language that means ” I’m running these tests to cover my ass.” For someone who used to get anxious for days, even weeks, I only got anxious for about five minutes which for me is zen-like (and that’s when they  told me I had to see the darn cardiologist.)

As soon as we got home,  I made myself my old standard comfort food, an American cheese sandwich on soft bread with butter, some salt-ridden baked sour cream and onion Lays potato chips( for medicinal reasons only) and a cold Yoo-Hoo to drink. For dessert, nothing speaks comfort more than a dish of really rich vanilla ice cream, softly melting in a red ceramic dish. No drugs of any kind were necessary. No jelly on pizza, I required nothing else. Damn, I was proud. But, I still have to do those stupid tests unless, as my sister suggested, I cancel?! What do YOU think?

Woman in Café with Yoo-Hoo and Cigarette, afte...

Woman in Café with Yoo-Hoo and Cigarette, after William Glackens (Photo credit: Mike Licht, NotionsCapital.com)