Fibro Girl, Grey’s Anatomy And Me

Grey's Anatomy (season 1)

Grey’s Anatomy (season 1) (Photo credit: Wikipedia)

When I think of “Fibro Girl” I imagine a small, spunky superhero with brown hair and round black glasses and a red cape that has a big bold black F on it. I don’t know why I think of her that way but it amuses me. Maybe because it’s such a juxtaposition between her life and mine. She is trying to fight Fibromyalgia with her strength. I have NO strength. When I was FINALLY diagnosed with Fibromyalgia, seven years ago, my strength was taken away.

Our lives with this illness are question marks. It is hard for us to plan ahead. In fact for me, it’s impossible. For people who DON’T have FIBROMYALGIA OR DOUBTERS (seriously? still?)  I am physically unable to commit to a date in the future without the caveat “depends on how I’m feeling.”  People who cannot understand that are not true friends. We didn’t ask for this, we wish we didn’t have it. Believe us.

My current experience with Fibromyalgia is that I am able to do one errand per day, MAYBE two. If I push my limit I’m wiped out and pay for it later with exhaustion/ pain. At the moment I am not suffering as much physical pain as I had in the past. (see past Fibromyalgia posts) There’s always some pain but I have learned to accept and manage that pain because of a great doctor and the right combination of Fibro drugs. Now, doctors are worried about a new “balance issue” which has nothing to do with Fibromyalgia.  More tests, a pink cane….I can’t walk a straight line, two perfect CAT scans. Can we stop now? No.

Fibromyalgia takes control over us. I’m embarrassed to say that I never thought about it that way. Amazing how our lives change so quickly. If stress is indeed a factor, I’m in deep trouble. My husband got laid off 2 days ago. I can’t work even though I want to and we need the money but it’s not possible. It doesn’t seem right to punish us for something we physically cannot do. Not right at all.

We don’t live in a perfect world, although I really do know people who live a charmed life in every aspect of their lives. Lucky them, maybe they have dark secrets but I doubt it. All I want is a break in having to struggle every single day with some new illness or symptom. The umbrella of Fibromyalagia has so many illnesses underneath it I go to the doctor(s) way too much.

Right now, with the weather is getting colder. I always feel worse when it is cold outside. Then, a good time for me is staying in bed with my dog lying next to me, watching Grey’s Anatomy, Parenthood or The Voice. The television has become my life line. That and this computer connecting me to friends with Fibro and without. We do the best we can with what we have. Minute by minute, day by day. We’re in it together, holding hands, on-line and off.

I Need Help: Fibromyalgia-TMJ

closed TMJ

It’s a pain like no other, hard to describe, impossible to treat, at least for me. Falling under the Fibromyalgia umbrella, TMJ is like lightning striking your ear and jaw straight through your brain and head. It kept me up all night; no pain-killer helped it, no heating pad, ice, soft foods.

The pain shoots, there is no warming and no treatment that helps; I didn’t eat any hard foods yesterday. My jaw usually pops and goes back into its socket; I live with that. I was a bit worried about the Presidential election but not enough to be awakened all through the night in utter agony as if I had been shocked by electrical wires, moaning and groaning all night long. I was restless, weary and I hurt so badly; I toss and turn to see if lying a different way will help. Nothing works.

Even though I have had Fibromyalgia for years, the varied symptoms (maybe because of the cold weather?) are worse now. I wish I could scream out loud and get it all out of my system but I can barely open my mouth. I try not to speak, to hold my lips a certain way; I pretend I am a model who is posing for a sculptor who is doing an impression of me in burnt-red clay. I can’t move my lips or my mouth for him to get the correct shape so I try to relax my mouth, my muscles until I find a single spot that doesn’t make me cry out loud. I try desperately to hold that same place so I don’t scream; I am just asking for tolerable not even for feeling good.

I have dealt with many of the other symptoms of Fibromyalglia in an accepting way as possible but nothing has been as urgently painful as this. I’ve been to ENT’s (Ear, Nose and Throat Specialists) convinced I have had flaming ear infections until the diagnosis was always the same. TMJ.  Now, I no longer go to the doctor, I know what it is and I huddle under blankets, drink liquids through a pink striped straw and pray for the pain to subside.

Those of us with this chronic pain disease have so many different symptoms, yet there is usually one or two that affect us the most. This is one of them for me. Pain, out of nowhere, unexpected, usually starting in the middle of the night and continuing as long it takes. I’ve tried the mouth guards (sort of), I’ve tried heating pads, I’ve tried deep breathing and meditating. TMJ lurks in the quiet of my brain and body and jumps out of the darkness to scare me with its razor-sharp accuracy. It attacks with no warning, no signals. Unlike migraines, there are no warning signs. This, I find hard to deal with, hard to surrender to so much pain for however long it decides to stay. For once, i am helpless in this situation, I feel disempowered and small, the pain has caught up to me and it is winning.

Clown Underpants

Hospital Bed

Hospital Bed (Photo credit: Indiana Public Media)

Last week, when the nurse in the hospital gave me a warmed blue blanket I thought she was an angel from heaven. I had already been waiting three hours for my 15 minute procedure in the outpatient unit in our local hospital. I was there for a Cystoscopy, having a camera, pretty much shoved up your bladder and beyond. I had already been given 10mg of Valium orally; (why do they tell you, you aren’t supposed to take a sip of water or anything at home when they offer you these drugs with water in the hospital like candy at a Halloween party?)

The nurse did get permission from the arrogant anesthesiologist who took my disclaimer of incredibly painful TMJ, another side effect from Fibromyalgia, with a shrug of his shoulders and a basic “not my problem” attitude. Kudos to my doctor who apparently switched anesthesiologist so a lovely Doctor replaced him and she used a different drug and didn’t have to wire my jaw open wide, thank you! You were kind, gentle and I remember your sweet, assuring smile that I would be dopey and sleepy in about……..and that was it.

Next thing I knew I was in some hall with my name being called way too loudly. “Laurie, Laurie” are you awake, wake up!” the nurses shouted and I had no idea where I was or even who I was. After saying “Where am I?” not at all original, I remember I uttered my husband’s name and someone went to get him. Apparently the procedure was over and I was in the hallway.  The same nurse brought me huge, mesh “clown” underpants which, I found hysterical. Let’s just blame it on the drugs. (but really they were SO funny!) I wish I hadn’t thrown them away!

Oh, those memories just come flooding back, pun intended. No one told me or prepared me that after a cystoscopy I would get cramping and pain and bleeding and would need the same supplies I needed when I still had my cycle; that pain was familiar. It’s funny how when we try to recreate happiness it’s hard to do but pain? We remember it vividly.

I wasn’t hungry anymore or thirsty, I was just tired and the only thing that interested me was a cup of coffee.  My pounding head felt as if a boomerang was bouncing between each lobe of my brain, what’s left of it that is. With Fibromyalgia comes “Fibro Fog” I don’t need to define if for those of you who have it, but for others who don’t know what it is: it’s an extended brain freeze. It bothers us much more than you, even if you have to hear repeated stories. It makes us feel stupid, old, daft and like we have dementia. We forget what we have done five minutes ago, it’s sad. Forgive us and try to be kind.

Finally home, I crawled into our bed, Lexi, my dog, climbing on and lying across my feet, her way to say she cares, not leaving my side. She licked each finger, I stroked her fur. Grateful to be home, to be in bed, I thanked my guardian angels for keeping me safe, I held one silver guardian angel key chain in my hand. Most of all, I told my husband how much I love him and how grateful I am for all that he does for me and to the nurse that brought me the warm blue blanket: thank you, it’s the little things that make all the difference. I appreciate all of my friends, especially, my on-line friends who support me and care for me without ever meeting me. You mean the world to me too!