*A Blob In A Bed

As lightning strikes and cackles, silver pain against a mournful deep black sky, rockets flare rapidly from my brain to my chin.  Immediately, I recognize and rationalize the signs; I sigh wearily breathe slowly and finally admit that TMJ has come back to stay for the next few days or  a week. At least I love my two options for dinner, peanut butter and jelly or an American cheese sandwich and tomato soup:

 

 

I had a tiny, mild spasm when we had dinner but I was eating the mushiest of foods. A veggie burger that I had to scoop up with a spoon and I didn’t eat the top half of the bun. After that, a small portion of ice cream that I put in the microwave, I was sure I had paid the price for the pain already. Yeah, right. As if fairness counts in this world. I shake my head from side to side.

 

I didn’t “say AHHH” as if I was giving in to a strep test, my mouth was as wide as it could go comfortably (yes, dentists/doctors from all over say I have a child size mouth and face and hands and ring size.) I do remember the tip-toe beginning signs of TMJ and paid heed to them, with further occurrences, I forgot about it and went to sleep and slept well. When I woke up (or did it wake me up?) the first flash of agonizing pain ripped through my brain to my ear and down past my teeth into my wobbly neck.

There is no rhyme or reason for when this happens so I just resign myself to it happening every once in a while and search (I know, I know) for the mouth guard that I should have worn all along. My bad.

 

 

I can’t feel too sorry for myself because I’m the one to blame. I remember yesterday, even before the first pang, opening up the case and finding it empty. I did find it later on, of course, I’ll need to search for it again ( Fibromyalgia Fog) since I forgot where it I found it. I don’t lose things, I just misplace them ( repeatedly.) I look outside at the cold, crystallized window and I find a little comfort in the fact that I can nurse myself back to health today without (a lot of ) help from anyone. (PS I found it and have been wearing it.)

 

I slip back into bed with my five layers of blankets and heating pad, it is the second day and I am still in so much pain that I can’t even go down a flight of stairs to make my cherished mug of coffee. I hate asking for help but this morning I knock on my daughter’s door and ask her to help me. In a second, she goes downstairs to make me coffee and warms my heart. I am so grateful for her.

English: steaming hot mug of coffee

The coffee barely cheers me up which is unusual. I try to gulp it down quickly but the pain interrupts me. I’m doomed. I’m not allowed to use most pain medication because of my kidneys so I reach for one Tylenol, two.  I automatically click the heating pad that lives beside me on the beige carpet. Please help me soon….

 

I don’t know how other people can get motivated to get dressed and race out of the door when it is below freezing outside. I truly wonder. I don’t believe I was like this when I was young, but then again, I didn’t have Fibromyalgia or Hashimoto’s Thyroiditis.  Maybe I did have it all along but never knew?

 

My mother calls and she hears “the slight off pitch” of my voice.I can never fool her, my mother and my son are the only ones I can’t fool. She zeros in for the kill. “What’s the matter?” she inquires directly bypassing all courtesy. I answer truthfully yet less urgently “I just have a little TMJ thing going on, that’s all.” She sighs, she feels helpless, I totally understand. My 22-year-old son had the flu last week and I certainly felt the same way, “what can I do, do you want something to eat, tomato soup with mashed up crackers? no? NO?!)

Mothers love to mother and when we can’t or when our kids grow up, at first we don’t know what to do. Mothering is our job, one we always will love. Without it, we just feel a little lost. Many people, including myself, ask themselves the question “Who am I now” when our youngest child is in college.

I know the feeling. After my daughter’s two wisdom teeth were extracted during a summer holiday and the medication wore off, she got up and gently woke me up at 3 AM. She scowled and said through muddled cotton mouth “it hurts.” For me, as bad as I felt for her, I felt happy I could help her, I could mother her and make her feel better. I didn’t want her to have pain, I wanted to make any type of pain go away.

My daughter and son have left to go out, my husband will be home shortly. I will go down and make my own soft American cheese sandwich and drink some Yoo Hoo, I don’t want to bother my husband who has worked all day. I understand pain, I’ve lived with so many different forms (too numerous to list), I don’t need people near me, I have all of you.

Thanks, Facebook Friends for always being there for me.

*DON’T WORRY ABOUT ME, PLEASE.
 

 

 

 

 

 

 

 

 

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Eppiglottitis 2: The Movie

English: Diagram of the Human Throat for the T...

English: Diagram of the Human Throat for the Throat article. (Photo credit: Wikipedia)

It’s the season when Summer is ending and you know you have a few precious days left of warm weather, light clothing and a little bit of sunshine left. As soon as those little Italian “prune” plums as we call them, appear in supermarkets, we know, summer is over. I’ve seen large candy packs lined up like soldiers at the drugstore and supermarkets for Halloween for for the past two months.  I’m waiting any day now for the Thanksgiving decorations and the holiday decorations: Christmas lights and tinsel and Chanukah menorahs and candles to be placed. In my family the fight over Thanksgiving has been going on for months.

In preparation for the Fall and Winter months, I decided to get ready by buying a large container of “home-made” chicken soup.  I make a mean chicken soup, let me tell you, better than theirs by far, but it was 93 degrees out and I couldn’t stand the thought of making it in the in my hot kitchen. I just wanted to be ready. Prepared for what, you ask? Well, obviously you have NOT suffered from the pain and misery of the dreaded disease Eppiglottitis which I have had several times and I know, my faithful readers from all over the world have too.

I am the Queen of Eppiglottitis.

Describing it as hell on earth does not give you an adequate picture. In my first Eppigottitis post called” Callling Eppiglottitis A Bitch Is A Vast Understatement” I heard from people all over the world, each one relieved to find another person that had it this miserable nightmare.I believe I described it as a sharp steak knife plunging down my throat repeatedly. It is the disease that has searing pain constantly underneath your throat for at least ten days and if you haven’t suffocated yourself yet by not being able to breathe, you have to take 3 different types of medicine to slowly get back on the road of recovery. The problem is, once you have the disease, any little cold, or any allergy that starts with a sore throat throws you into a tailspin of fear.

Like right about now….Is it allergies? I sure hope so. It is allergy season. I’ll give it the weekend. Do I go to the ENT? Does he really have to shove a tube up my nostril again to see the flap below my throat? Isn’t there any other way? Nope, there isn’t. People who have this horrible illness go through this every single time there is a mere tickle in their throat. We should start our own support group.

One reader had an interesting suggestion that I will pass on to you: because you CANNOT swallow he/she laid on their stomach and used a bucket to spit. I have to hand it to them, that is pure genius and would be a wonderful opening scene. Kudos.

Ok, fine there really isn’t a move about Eppiglottitis or book about …but there should be…..

Best wishes for a pain-free season.

Hope, Lost

fibromyalgia awareness

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.