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 (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 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 (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.

 

 

Hope, Lost

fibromyalgia awareness (Photo credit: veganjoy)

I am feeling funky today. Not funky ha ha, funky bad, I get those days from time to time. Fibromyalgia and chronic pain are to blame. There are days when I have a really good attitude about my chronic pain disease, Fibromyalgia and I say things to myself like “it’s not life-threatening” to keep me sane and balanced and aware, even grateful. Then there are nights like tonight where my face crinkles in uneasy frowns and my smile has disappeared as if I have two very different personalities. This “me” is not happy, and this “me” is angry, pissed off and ready to rumble.

Tonight is a night when many of my Fibromyalgia on-line friends/sisters in solidarity, are on-line, I read their blogs, they read mine.  There seems to be a lull in energy for all of us, a low in satisfaction, an overall feeling of just wanting to give up and an off the wall chart on pain levels. We have had enough, all of us. Yes, we know we have the illness, yes we will never get rid of it, yes it hurts and clouds our minds so much that our children look at us as if we have dementia. It’s called Fibro Fog.

I’ve never been overly concerned with my age, 55, but I am disappointed and disgusted in my physical limitations. Between low blood pressure, Hashimoto’s Thyroiditis and Fibromyalgia, I don’t have a lot of energy. Other times, I have balance issues, always I have pain. At some point in the day or night, pain wakes me up in the cramping of my arms, in the battlefield of my legs. My husband passes by me and by accident his soft, cotton shirt touches one of my tender points and I scream out in pain. He didn’t do anything wrong but just the touch of the fabric was excruciatingly painful. It’s not fair and yes, I am whining tonight.

I’m tired and cranky and cranky some more. Oh, p.s. IT’S NOT IN OUR HEADS!

My jaw hurts from TMJ, my stomach hurts from IBS, my hair falls out and I can’t get a good night’s sleep which is imperative to my health. I can’t win, we can’t win. I feel  impatient and eventually I will settle down but now I just want to be angry at how my body has failed me. You know it’s true.

No, I don’t want platitudes, I just want to vent and say that I know it could be much worse but for now, it isn’t exactly like a walk in the park. I have a puppy, she needs to be walked, she needs to run but I can’t run with her. I take her on short walks when I can and sometimes I just throw her a toy, from my lying down position on the couch. It isn’t much but it is something. Still, I feel like a bad puppy mommy.

I had to have a brain/spine MRI because my imbalance was so severe that I fell flat on my face and knees outside with nothing to trip me. I’m seeing my Rheumatologist but I KNOW he doesn’t have the answer. He believes me, he cares, he tries but I know he can only do so much. Part of me wants to throw away the medicine I am taking (Savella) and see how bad it is without it. On the other hand, I’m scared to do that, I’m a little better than I was originally. Just not good enough.

How (NOT?) to Remember Names

Image via Wikipedia

Names? NO. Faces? ALWAYS.

No tricks, no memory, just really good and prompt improvisation. I have met many people and I used to have a very good memory and would remember someones name immediately and forever. Not Any More. Whether it is age, Fibromyalgia fog, hormones or any combination, it is really hard for me to remember someone’s name (unless they have made a really, special impression on me.)

When my son was little and I got introduced to a team of little guys “Hey, Buddy” worked well. “Sometimes “Hon or Sweetie” came in handy for my daughter’s little girlfriends. But now? I can meet you, shake your hand AND repeat your name out loud and there’s a good chance that in two seconds I will have forgotten it.

The only thing that makes me feel better is that I will always remember your face. Always. Even if I have not seen you in 35 years. My husband still cannot believe that we went to a bakery when we lived in Massachusetts, walked in and I said “Nora?” The woman turned around, she seemed a little flustered, but sure enough she had been my teenage friend in seventh grade back in New York. It had been about 35 years since I had last seen her; at a sleepover birthday party in her parents’ apartment.

So, before you get insulted that I do not remember your name, rest assured when I see you 20 years in the future, in a different state or country, I will know that I know you, by your unique, impressionable, face.

We Didn’t Ask For This (FIBROMYALGIA)

As a Fibromyalgia patient I need to explain a few things that the general public doesn’t understand. Actually, there are things that WE don’t understand but we are clear on one thing. This is NOT in our heads. Whatever crack pot thought that one up was clearly not a pain sufferer. We didn’t ask for this disease that makes us  live in a state of chronic pain.  Believe me, no person would want this every single day of their lives, no person would choose this.  We live our lives on the edge of our seats for two reasons: 1) because sitting one place for more than three minutes will hurt and 2) we can’t make plans ahead of time because we don’t know how we will feel on any given day.  People ask me to do things and I always use the same line: “Let me see how I feel.” Of course I have said it over and over again but people who are not patients tend to forget.

Which reminds me: forgetting things, we start to speak and stop, we go upstairs to get something and then not remember what we are looking for.  No, we are not feeble-minded, nor are we crazy, old, senile or menopausal. (Ok, we could be a mixture of things) There is something called FIBRO FOG which makes us forget, makes us as cloudy as fog rolling in to San Francisco. It is not our fault. Do you think I like looking like an absolute fool? Don’t you think it stings when my children say “I just told you that”or “Mom, I’ve told you that story 100 times.” I’m sure you did but “Fibro-Haze” got to me once again. I honestly don’t remember the last time I had a totally lucid conversation. I seem to drift half-way through. My husband recommended that I take stimulants, the pills given to people with ADHD. Thanks, but I’m on a lot of medications (that don’t help) as it is. Please don’t play doctor, you can’t imagine how many people do that to us. We know you mean well, it just doesn’t help.

If patients, had wanted this stubborn illness our homes would be filled with Fibro-Friendly items. We would all have an in-house masseuse. The refrigerator would be filled with our favorite soft foods,  soup, pasta, cheesecake with an apricot glaze, soft and chewy brownies that won’t activate our TMJ. We would all have extra-king size beds so we don’t have to bump into our partners in the middle of the night. Hair stylists would fluff out our thinning hair to make us feel better about ourselves. Our bedrooms would be equipped with huge 3D, High Definition television sets, the exact height that is comfortable for us so we don’t strain our already tense and knotted necks and shoulders. All houses would come with nurses and aides, to drive us, do the laundry, cook dinner and attend to our every need.  Our medicine cabinets would be filled with newly invented “Miracle-Meds”, an innovative medication that actually helps and relieves all of the pain. Not cocktails of useless pills that don’t do anything except make our stomachs, and IBS,  feel all sorts of crazy weird.

Chronic pain, with no relief is horrible. Please don’t talk to us like we are  psychologically challenged. There is nothing wrong with us except that we hurt. We hurt constantly with no relief. We have pain that is relentless, pain that is constant, pain that we have no choice but to accept it in our daily lives. We also don’t want your sympathy, but we would love your understanding.