*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.

 

 

 

 

 

 

 

 

 

Haiku Horizons, Try

Dark, stormy, alone

Frozen hopes, cling to memory

Trying hard, hold on.

 

 

 

 

 

 

 

 

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Black, electric probes

Try to shock, me out of me

Crying bloody tears.


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Try to imagine,

life with chronic pain, grief, tears

A fantasy, sun.

 


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Cookies? Check. Ice Cream? Check. Impulse Items? Check.

WELCOME HOME

 

I haven’t had the energy to go grocery shopping (something I hold near and dear to my heart) since early Spring. I’ve had all my illnesses flare up at the same time: Fibromyalgia, Hashimoto’s Thyroiditis, Syncopy, Fainting and Crashing, No Energy etc. For me? A tragic loss. For the supermarket? A major deficit. I’m not joking (as most of my readers will tell you) I LOVE FOOD, good food, strange food, NEW food and products. I will always look at every item on the shelves to see if I can spot any new items. I always can and I always buy them. I have no idea what the photo below is showing but that is a product I would definitely buy and eat, wouldn’t you?

Fastelavnsboller (Photo credit: Wikipedia)

 

 

 

 

 

 

My husband came along for this trip just to see if I could physically make it but once we were in the store I shot out with my carriage grinning wickedly. I don’t need a list nor do I want one. This is my home. I look at every item in every aisle and I know what I need, want or have to have for that week.

I knew it was a mistake NOT to go into marketing after I graduated college. I am the one to pick out the next new product, the new sensation, the new flavor, I’m a marketer’s taste test dream. Is it too late? I am at my prime, have your people twitter my people.

My mom says I have been like this since I’ve been five years old. I haven’t outgrown it and am proud to say my children, have inherited this hobby too. Even now, in their twenties, they love to go shopping with their mom.

For a while when I was younger (no, I’m not kidding) my then boyfriend, now husband, watched a show called Supermarket Sweep. We watched the original show every single night when it first came on. We toyed with the idea of getting married in a supermarket but somehow never went through with it; I regret that.

Stew Leonard’s is a great place to shop and fun too. I bet they would help if we could talk my (un) romantic husband into the idea. Right near the mooing cow! Don’t get me too excited, please.

Stew Leonard’s (Photo credit: JeepersMedia)

Anyway, I bought: (New Product) lemon ice cream with mashed lemon cookies inside,huge, soft oatmeal raisin cookies (new brand) some new kind of skinny-ish popcorn for when you need something slightly salty but not fatty while you are watching a movie at home.

 

Also, I am now taking a new medication for my fainting spells, the fancy name is Syncopy also: Fibromyalgia, Hashimoto’s Thyroiditis, Narrow Angled Glaucoma, Eppiglottitis, IBS,  and others. I now have to have breakfast. I bought apple, blueberry and strawberry breakfast bars. This is the first time in all my life that I have eaten breakfast, my mom will be so pleased.

Usually, it’s just that steaming cup of coffee in my white Starbucks mug with half and half and one sweetener. I look forward to the smell and the first sip every single morning.

After that, I just go on with the boring details of my day. If I don’t feel the need to nap, I feel it is a personal triumph. Then our dinner conversation begins around 4pm. What shall we cook?  It doesn’t really matter, last night we had hot dogs, baked beans, and broccoli, the night before pizza but they are all precursors to the most important part of any meal: dessert. The lemon ice cream dessert:

I dipped my spoon, my little spoon, into that new lemon ice cream, slowly, tasted a small bite, let it linger on my tongue and swallowed slowly, making sure I had a cookie bite with the ice cream. I was hoping for a dance sensation in my mouth or as my husband and I used to say “I hope it dances.” Did it? Oh yes. After half a cup of delicious lemon ice cream with bits of lemon cookies, I have found a new love. It’s so nice to be in love again, I feel tingly all over.

 

An Open Letter To Ellen Degeneres

English: Ellen DeGeneres in 2009. (Photo credit: Wikipedia)

Dear Ellen, I hope you don’t mind me addressing this to you, I just need someone to listen, someone who cares about other people. I thought you were the right person even though I’m sure you will NEVER see it. That’s okay. With the exception of a few best friends I’ve learned the hard way that other people are too busy in their own lives to care.

I DON’T WANT ANYTHING FROM YOU.

I guess I’m trying to think and talk out loud here. I’m lost, and have no idea what happened to me, I have no idea who I am either though I used to know so clearly.

Have I just become a mountain of symptoms trying to blend themselves together in a jig saw puzzle where no piece fits? I’ve made changes, I stay away from negative people, I try to be as kind as possible and pay it forward when I can but still trouble follows me like a black cloud.

Believe me, I am NOT asking for pity. I don’t want anyone’s pity, if I want pity I give it to myself, underneath my three layers of blankets, with the door shut tight, my dog lying next to me on my bed. I don’t want pep talks either, encouraging me that it “is just a phase.” This phase is my life and I have accepted it, I just don’t understand it.  When I try to fight against the “down” period, people tell me not to do that and to be positive. Everything is a mixed message.

You have the natural talent to bring joy to others just by being yourself, I love that.

Right now, I am a huge collection of symptoms that I don’t mind sharing, I’m 57, there are people who are 97 that are healthier than I am. From head to toe: narrow angled glaucoma (eyes) many, MANY painful treatments in my eyes to try to correct that, but its a life long condition, hearing loss (had stapedectomy-operation for ears) the dreaded Eppiglottitis, I don’t wish on my worst enemy, I shiver at the thought, (open, gaping wounds below the throat,) horrific TMJ, shooting pains from my jaw/ear to my brain causing me to scream with agony caused by any random thing and some other facial myalgia the doctors threw at me) which I don’t even count. I have IBS, Fibromyalgia, Fatigue, No energy, Chronic muscle and joint pain, Fibro Fog (not remembering something someone said a minute ago.) General Anxiety Disorder, Hashimoto’s Thyroiditis (an auto immune disease of the thyroid) foot pain, wait, the most recent one and most deadly,  Kidney Failure, Stage 3? (No one ever told me about Stage one or two) I think I’ll stop here.

Now for the social things, I can’t work because of the above illnesses, my husband was laid off for the second time and still is not working. We have two fabulous children who are attending two different state universities and a dog (our second) I rescued from a shelter.

I want you to know that we ARE thankful for our blessings, we truly are. Writing this down makes me realize that even more.Thank you for listening, sometimes it is good to write it down and look at it on paper.

But, am I jinxed? Is this what they call “going through a rough patch?” Whenever I feel I’ve reached bottom something else happens. Do you only know where the bottom is when you finally start climbing up slowly? Isn’t it possible to stay down here forever?

I guess I just have to accept what is going on now, breathe slowly in and out and believe that something good will happen. Someday.

Please don’t “like” this post. I don’t.

Support Thyroid Change, Please

Overview of the thyroid system (See Wikipedia:Thyroid). To discuss image, please see Talk:Human body diagrams (Photo credit: Wikipedia)

A really important organization with lovely people.  Here is my published blog post.

http://www.thyroidchange.org/blog.html

http://www.thyroidchange.org/2/post/2014/02/you-call-them-curveballs.html

Energy

Physical and Emotional Energy

Energy, or lack thereof, is one of the main complaints of all the varied yet connected physical illnesses I have. I honestly don’t remember what energy feels like anymore, except for the brief time when I was on Prednisone. I felt half my age and filled with methamphetamines. The world looked bright, I appreciated every second of being in that world, I felt grandiose, I was so happy to have this reprieve to what I perceived as “back to normal.”

When I had to taper down slowly I understood that this was not a drug to take for a long time. But, I distinctly remember when the drug disappeared from my body. Similar to the colorful, glorious leaves in Autumn slipping slowing to the ground until none were left… .. I looked up and saw only dry, miserable lonely branches. I remember specifically the day that the medicine left my body completely, I put my head in my arms and sobbed. There was an old movie called “Cocoon,” where elderly people were given the gift of youth for a short time, their bodies replenished, their illnesses healed, their faces back to their youthful selves. They seemed so happy until the potion wore off.

Of course the potion wore off, doesn’t it always? Aging is inevitable, loss of hearing, sight, lack of energy. I have been without that energy, that youthful quality for over seven years now but not just from aging gracefully, I could handle that. I am lying in bed with my back twisted, the heating pad behind me, feeling quite sorry for myself for actually being disappointed that I had to cancel a dentist appointment because of back pain. If that’s not pathetic, what is? It was a place to go, to get out of bed, leave the house and drive, to talk to new people, nice people, unknown people.Who understands this except other people with these disorders?

I blame my Thyroid (Hashimoto’s Thyroiditis) and Fibromyalgia for my lack of energy yet I blame the nasty, hateful people around me for draining me, for stripping me of happy energy for my soul. They are not to blame, however, I blame myself for allowing them to do that. I control me. This is my responsibility, not their responsibility. Let them rip each other apart if they want to, I don’t have to be involved with it anymore. That is my choice.

I will control whatever energy I have left. Physically and Spiritually.

LAF Photography

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.

Hitting The Wall: Fibromyalgia

English: Common signs and symptoms of fibromyalgia. (See Wikipedia:Fibromyalgia#Signs and symptoms). To discuss image, please see Template talk:Adult female diagrams References fibromyalgia-symptoms.org Retrieved on April 19, 2009 (Photo credit: Wikipedia)

Fibromyalgia and Fun. An oxymoron. Who would argue with that? Everyone who has this chronic pain illness.  I’ve recognized a pattern, on a “good” day ( rare)  I can get out of the house (showers are optional) in the morning and I am able to do a couple of errands. The maximum time spent out two-two and a half hours. The other day I pushed myself to three hours and right in the middle of the sidewalk I hit the wall.

Literally, I stood on the street and felt all energy drain from me. I couldn’t speak, walk or focus. Finally, I managed to get to my car and after a few minutes of sitting down, having something to drink and eating some peanut M & M’s, I was  able to drive home. *(Think about doing this fellow Fibro Buddies, yes, its sugar but it’s also protein.) Once home, I dragged myself upstairs with my hands on the stair rails, one step at a time, like a toddler. I flopped into bed with my street clothes on and passed out for three hours.

Rolling around in my brain for the last day or two is a notice posted on Facebook about a fellow Fibro sufferer who has taken her own life.** This is not the first person to do so and it makes me so sad. Was it the pain, the frustration, the depression, the anxiety, headaches, all the above? Did she take antidepressants or anxiety tablets?  Was she faced with uneducated and unkind people who didn’t believe her?  Did people think she was just “complaining” a bit too much or maybe she had a doctor that  rolled their eyes and told her to just calm down and stop whining.

I will never know, but I cannot stop thinking of this woman, so desperate to leave her life, her pain. I don’t know her but I feel FOR her. Yes, we do have a chronic illness that is limiting and there is no cure for it. BUT, through trial and error, it can be maintained. You need to stay and fight for your life, for your children, husband, partner, mother, lover or precious dog or cat. You need to fight for YOU.

We have support groups for this very reason. Please don’t give up. Join one of the many wonderful groups on-line if you need support and, if you are EVER thinking about taking your life, let someone know, a friend, a neighbor or call the hotline below. I’m begging you. I care, we all care. We understand. There is a tomorrow that will come very soon and it may very well bring with it lower pain levels and a better day. The day you are having is probably the worst it can get, give your life another day, another chance to be happy. That’s all I ask for.

**No matter what problems you are dealing with, we want to help you find a reason to keep living. By calling 1-800-273-TALK (8255) you’ll be connected to a skilled, trained counselor at a crisis center in your area, anytime 24/7.

 

Eppiglottitis: Asked and Answered

Throat Diagram (Photo credit: Wikipedia)

To my fellow Eppiglottis Sufferers,

Here are some answers to questions you have asked me:

1) YES you CAN get Eppiglottitis AGAIN and I’m sorry. ( I have had it twice )

2) There is no way to prevent it. If you found a way, please contact me immediately.

3) Yes, it causes unbearable pain.

4) I  worry as soon as my throat tickles much less hurts.

5) “Calling Eppiglottitis A Bitch Is A Vast Understatement” is my most sought after and popular blog post.

6) No, I never had my throat/breathing problems/occur  but if you have trouble breathing,

go to the Emergency Room or call for an ambulance. Do NOT take chances.

7) No, you cannot “SEE IT” looking down your throat. It is below the throat and a doctor will have to “scope you.”

(don’t ask.) Okay, fine, he or she will have to thread a tube through your nose so the doctor can see what is happening down there.

The first time I had it my ENT (Ear, Nose and Throat Specialist) said “How the hell did you get THAT?” Gee, thanks, Doc.

8) Yes, I too, live in constant fear of getting it again.

9) Other doctors? I have been told if I get it again (UGH) to see an Infectious Disease Specialist.

10) It hurts so MUCH because it is incredibly painful to swallow and you have to swallow, lying on your stomach and spitting into a bowl is an idea but not a solution.

11) I feel your pain and your anxiety and I hope this will be an Eppiglottitis free year for us all.

12) Yes, I do have Fibromyalgia and an auto-immune disease (Hashimoto’s Thyroiditis) but apparently there is NO connection.

13) and Yes, if there is interest, I will consider starting a group on-line.

Feel free to keep those questions coming and to share your own miserable experiences, believe me I can relate to them all!

GOOD LUCK FOR A PAIN FREE WINTER!

#FWF Kellie Elmore

Frühlingsblumen verschiedene Krokusse (Photo credit: Wikipedia)

Circle of Life: Death & Rebirth

This is the time for introspection, to put things in order not just for my house, but for me. My life lesson: I have clung to old friendships far too long, they are dead, like the crumpled crisp brown leaves on the yard. Friendships where I am the only one who is trying.  You can’t force a friendship and your real friends, your true friends are always there. “The past” is a nice memory not a basis for friendship.

It is the second week of November, I look out my window and see gray skies and naked trees. There is no more sun peeking from behind blue skies, I mourn the sunshine, the flowers, the bright, orange, red, yellow leaves of the Fall that used to embrace the trees. What was once my favorite season is now seen as the precursor to the worst season, Winter.

Winter is on its way, people are dismissive and say “add layers of clothing” as they stuff themselves into scarves and hats, mittens and feel warmer but not me and not anyone who shares the chronic illness of Fibromyalgia and Hashimoto’s Disease. Those words taunt us, they are a  joke, a cruel comedy, a farce. Nothing helps, the winter chill goes through our bones and latches on like a one huge tick, sucking blood. We are always exhausted, we have no energy, we have what seems like the flu without the fever, every day of our lives. In the winter our bones and muscles are stiff, unyielding and painful.

Many times I don’t get dressed. My nightgown becomes my party dress and my pajamas serve as my jeans and sneakers. I know when I am in a ” Fibro Flare” when I cannot wear anything, that strains against my body. My body is bloated and the jeans make angry red imprints on my stomach even though they are the right size for me. If I have to be outside, as soon as I  come home I literally rip the tight, restricting clothing off, my bra, my pants and change into loose, soft pajama bottoms and a well-worn tee-shirt. It is only then I can breathe. To people with chronic pain, Winter is a slow death, a Tragedy.

After a long, bleak winter, when the temperatures get higher and we have weeks of rain, my body and mind change. My body hurts because of the dampness and the changing weather but my heart knows that soon I will see buds springing from the ground to show off the first fashions of Spring. One day out of the corner of my eye, I see several bright, green buds pushing their way from the deep, dark earth. It is the promise of Spring fulfilled, crocuses have pushed their way above ground: Hope. Once the crocuses have sprung forth, soon we will see the burst of color dancing before our eyes.  It is a ballet I love to watch.  I never get bored. In a matter of days the forsythia bush in my back yard has sprouted brilliant, bright yellow lights, buds and I know that we are safe and loved.

One day, the sun pulls out its lazy arms and stretches, beams its beautiful smile and soars to the top of a deep blue sky. It is officially Summer, It is time to Rejoice, to take advantage of every single day that we have been given, a reprieve, from pain, from gloominess, a treat. I enjoy the summer as much as I can. Even though extreme heat is not good for chronic pain patients, it is good for my soul to look outside and see the painting of flowers and sun and hear the laughter of children riding their bicycles in the neighborhood. The sun, makes me happy, it does affect my mood. It softens the world around us, like a soft, romantic filter on an otherwise hard life. I am grateful for the sun, every single day, it is time to Celebrate with friends: joyous laughter, food, children selling lemonade, dogs running around outside, people holding hands. This would be my final act.