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.

 

 

Enhanced by Zemanta
Advertisements

Eppiglottitis: Dear Innocent Souls, YES, You Can Get It Again. (I Should Know) 4/2013

English: Title: Torture Chamber of the Inquisi...

English: Title: Torture Chamber of the Inquisition. From ‘A Complete History of the Inquisition’, Westminster, London 1736 (Photo credit: Wikipedia)

The plight of those of us who have suffered from Eppiglottitis, an illnesses/virus/ torture/infection has gotten way with too much pain already and NOT just in the United States. People from many countries around the world share the pain. I know that for sure. There are searches for Epiglottitis on my blog, always. Today there was a search, from some poor, innocent soul who asked: “Eppiglottitis, is it possible to get it twice?” Oh, dear one, I just want to give you a great big hug and plant gentle kisses on the top of your sweet, innocent head.

Yes, you can get it again. In my blog I have written about the two times I had Eppiglottitis and how I wanted to beg, borrow or steal major pain killers from hospitals, doctors or become a gangster and hang out in the streets to score illegal drugs (okay not really ). People really do not understand the amount of pain that this  illness brings and frankly, unless your ENT (Ear, Nose and Throat, Doctor) has had it, they don’t know a thing about how painful it is either. Not for one second. The only people who know are the people who have had it or are going through it now. Do I smell the beginning of a support group?

What does it feel like? It’s like taking a scalding steak knife and searing your huge, ugly, raw open wound, repeatedly (obviously with no anaesthesia) over and over again. It is impossible to swallow because the pain is so excruciating but really what choice do we have? The last time I had it I was on a cocktail of medicines, steroids, a throat rinse, antibiotics and whatever else they threw at me but what I needed was a morphine drip and a sleeping medicine that lasted a solid week. I wish.

When I couldn’t stand the pain anymore I dragged my body to the medical group, to the ENT offices before they opened and BEGGED for someone to see me. I was in so much pain that I was crying and I looked like all hell, pale, distraught, helpless and hopeless. This is not something I would normally ever do. I was so grateful that they let me go sit in the office chair, who knows, maybe they were afraid of me. I WAS afraid of me. When the doctor came in, he scoped me, which requires putting a tiny tube through your nose to see beyond your throat. He literally gasped and said “How the hell did you get THAT?” I was not in the mood for rhetorical questions nor was I feeling combative. I just wanted him to tell me how on earth to get rid of this demon that had taken up residence in my body.

Apparently it’s not common to get and very difficult to get rid of, I live in fear of getting it again and I assure you, every Fall I think about it when the weather turns chilly although I am sure I could get it at anytime. Another doctor suggested that if I get it again to go see an Infectious Disease Doctor in addition to my ENT. Great, that’s what we need, to waste more time in doctor’s offices waiting to be treated. I’d rather check into Rehab so I could become a drug addict for pain relief until it healed.

I’m here for support, questions and comments. I am not a medical doctor, no, I’m better. I’m a patient who knows exactly what you are going through. Ask away or just complain, it’s not anything I haven’t complained about already.