*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:

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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.

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.

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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.

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*DON’T WORRY ABOUT ME, PLEASE.

 

 

 

 

 

 

 

 

 

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.

 

 

Whoever Said “Facebook Friends Aren’t Real” Is One Big, Stupid Idiot.

An American version of a fruitcake which contains both fruit and nuts. (Photo credit: Wikipedia)

The holiday season is winding down and I’ve read blogs about fruitcake, go ahead, start the jokes… Pass them around like some people did (not me, kids) like a joint or bottle of beer when they were in college. I’ve heard it all, all the silly jokes how nobody likes fruitcake, and everything is artificial, ad nauseam.  My father, when he was alive, ate fruitcake joyfully and loved it; he passed that gene on to me.

I love fruitcake, I honestly do. For years I begged people if they had received fruitcake as gifts NOT to throw them out because I would happily take it off their snobby shoulders. Funny, in all that time, nobody offered me their unwanted fruitcake. Nobody, until recently, one of my Facebook Friends, Sarita, saw me talking about fruitcake and out of nowhere she offered to send me a mini fruitcake that was baking in her oven.

Sarita, is one of my group of Facebook Friends that share a common and unyielding illness. We all seem to have some sort of chronic pain disease, in my case, Fibromyalgia. Believe me, it is not limited to Fibromyalgia (Fibromyalgia generally doesn’t work alone) but comes with many other ailments. I also have an auto-immune disease, Hashimoto’s Thyroiditis and some of my friends share that as well. Others have different, chronic pain but we are connected, perhaps not in person since we live in different places but definitely in our hearts.

When I told my (adult) children that my friend on Facebook was sending me a mini-fruitcake across the country they looked at me with those critical eyes, and the “what are you crazy” stare? “Mom, they said slowly in single syllables, you. don’t. even. know. her. she. could. be. send.ing. you. An.thrax.” I had never heard a more ridiculous thing in my life. Of course I knew her, I have known her for years, we’re friends, we are here for each other, we support each other.  The fact that Sarita was a “stranger” NEVER ONCE crossed my mind because Sarita was my friend and I was hers.

“So, my observant 19-year-old daughter said,  you wouldn’t mind if I was corresponding with some random man on the internet and he baked me some cookies and sent them to me and I wanted to eat them? Well, now that was indeed different, I said. I have talked to Sarita on the phone several times, we’ve been in touch with each other for years and I am not 19 and Sarita is certainly not some stranger. However, my daughter was right, I would not feel comfortable with her taking candy from strangers but I hardly see it as the same situation.

Facebook Friends for those of us with common limitations are not only useful to us but sometimes life-saving, Who knows better what it feels like to be in a Fibro Flare than another Fibro patient? I don’t like to complain to my family or my friends at home because frankly, they just don’t get it. How could they? They don’t have the illness. I’m not saying they lack empathy (most lack it a few don’t) but my Facebook Friends understand what I feel, completely every single day.

To them, I say THANK YOU, for the love and support and the ongoing kindness. We are all here for each other and that means a lot. I need to take a break now, for some more fruit cake and with it some pumpkin bread as well. What did you say about my Facebook Friends? Yeah, that’s what I thought. It’s okay, we are all wrong sometimes……May God or Spirit or Angels Bless these special people in my Life. They are in my life for a reason.

Happy Thanksgiving – On Gratitude

It’s Thanksgiving and being with family and friends is a huge part of what I am grateful for; not to mention my sweet dog curled up, on our bed. It’s seeing my son’s first smile as he enters the room, home from college. It’s my husband giving me a cup of coffee and a kiss on the cheek. It’s watching my daughter sing to our dog and wrap her arms around the dog’s fur. It’s the little things. Those snapshot moments that will stay in my mind forever as a present for my future.

It’s been a rough year but I’m trying to put that in the past. We’re still house-less but when our family is together, we’re still at home. I know I need to focus on my own attitude; to count my blessings daily, instead of my losses. When you lose a family member, it’s harder to do this. It’s been ten years and I still think  “I wish my dad was here, I miss him.” I know my dad would not have wanted us to mourn every holiday but still his memory is deeply ensconced in my soul. I would love to see him heaping his plate with mashed potatoes (known as mashlers in our family) and constantly refilling his plate. That’s all gone, but I have the memories and I am grateful for all the Thanksgivings and Holidays we did have with him; I need to appreciate that.

When I am at my family’s house today, with my two teenagers, my husband, my niece and nephew, brother-in-law, mother and treasured older sister, I will be happy. Today I want to collect new memories to add to my collection of past memories. Things will never be the same, without my dad, and I have to accept this different reality. It just isn’t easy.

What I have to focus on is that the rest of the family and there is a great deal of love, together in one room.  I know I have to look forward and not back,  each and every day. I will try to concentrate on the next generation, my two kids and my niece and nephew, four really great young men and women, who love each other deeply. I am grateful they have each other.

I am grateful for all my family, my friends, both old friends, new friends and cyberspace friends, my dog and the gracious blessings that we have in our lives. To ALL THE READERS OF HIBERNATIONNOW, I AM GRATEFUL FOR YOU!!!

Be kind, be grateful and love one another.

Gratitude (Chronic Babe Blog Carnival) November

Most everyone in our caring Chronic Pain community knows that the last three months has found my family renting a small room in a small hotel having been harshly betrayed and ousted from our house by termites, carpenter ants, and completely rotted wood. Everywhere. What started as a simple kitchen renovation became the nightmare you would imagine in a horror movie. That horror show was mine. At the very same time, my husband ruptured his Achilles Tendon while running to catch a train. It’s like one of those scary novels some people read so when you are finished reading you can clap the book shut and be thankful that the book is over and you can return to your own life. Not this time.

Facing emotional, physical and possible financial ruin for the house (no, insurance did not pay a dime) I had to adjust to our new circumstances and yes, I did cry a lot. But, in order to maintain my sanity and hold it together I decided, with a lot of pushing and prodding, that I needed to focus on something, anything positive. I was grateful that we didn’t have life-threatening diseases to deal with in a hospital. Truly, I gave thanks for that every day, sometimes every hour because while the situation we were in was uncomfortable and sad and draining, no one would die because of it (although we all felt terribly violated). I felt bad for my daughter, a senior in high school, who had to room with her parents on an uncomfortable cot in the same room. I felt bad for my husband, on crutches, non weight-bearing, hobbling around the room. I even felt bad for myself who got the brunt of everyone’s dissatisfaction. I managed. I even found the strength to drive my son to his first day of college and back, all by myself; I even felt proud ( because if you knew my sense or lack of sense of direction I’m lucky to be back home now.) IF I HAD TO, I COULD DO ANYTHING; a great lesson to learn.

Of course I wept, and I was cranky and felt sorry for us but that wouldn’t do me any good for three months, nor would it help my family, especially my husband who was bed -ridden or on crutches for most of the time, unable to work. I needed to know that, despite my own intense pain and flare-ups from Fibromyalgia and an auto-immune disease (Hashimoto’s Thyroiditis) I could do what I HAD to do. I was grateful I could do it even if I paid for it later on. It didn’t matter. When my husband had to be pushed up a hill in a transport, I was the one who did it. I don’t know where I got the strength but my mind and my guts and my determination became my strength and my shaking knees and shoulders made me even more determined to get up that hill. I managed and it felt good, my husband smiled and was impressed and I was happy too. All that talk about doing things for others? It is so right on.

I was grateful that I could help my husband, he who has always, ALWAYS helped me. I wanted to show him  that I could help him too. I’m not saying it was easy, it wasn’t. But, it was well worth the effort for the internal strength I got from within. It was worth seeing the smile on his face, the kindness of strangers who helped me manage the steps. It is a person that has heart and knows kindness. I’m convinced now more than ever, you either have it or you don’t.  You don’t necessarily need to know people for a very long time to know who they are. They will show themselves to you, very quickly, just watch and listen.

That new study that showed people had their own friends and considered Facebook Friends, also friends for support and trust? I am totally grateful for all my different types of friends because they can not be grouped, in just one group. My Facebook Friends, they are a special bunch, very dear to my heart. I hope I have told them enough times that they truly believe it. Gratitude? It comes from within. I sprinkle bits of my heart in my e-mails to my Facebook friends. From mine to yours and back. I’m grateful.