*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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Haiku Horizons, Try

Dark, stormy, alone

Frozen hopes, cling to memory

Trying hard, hold on.

 

 

English:

 

 

 

 

 

 

*****************************************************************************************************************************************************************************

Black, electric probes

Try to shock, me out of me

Crying bloody tears.

******************************************************************************************************************************************************************************

Try to imagine,

life with chronic pain, grief, tears

A fantasy, sun.

 

 

 

Talking Out Loud: Feeling Sorry For Myself

My throat is scratchy, every time I swallow it’s like a science experiment. I feel cold even though I am under three blankets. Oh wait, I shouldn’t be surprised, we’re back from our short vacation in the sun.

We are anticipating a snowstorm with wind and ice and I’m sure the clouds can just feel me smoldering with anger and resentment, like a fire just beginning to spread quickly.

The Universe can feel that I don’t want to live here anymore, the Winters are too tough for my aches and pain, Fibromyalgia has never been my friend but it is becoming my worst enemy.

I hate having to confirm a lunch date with my best friend in the morning although she totally understands.  Will I be okay for getting up and out of bed? Can I dress myself and drive my car and meet her over salads sipping strong, strong coffee? I have NO energy and NO short-term memory. That is excruciatingly embarrassing to me, that is the worst part.

I will know that only tomorrow morning and even that is iffy. I can deal with this chronic pain disease much more easily in the Spring, Summer, even Fall but Winter? Oh, Winter is the devil of all evil, to me. He’s that bratty, bad boy, the one every grade school had who tried to make other kids’ lives unbearable, the bad boy brat that succeeded in torturing a grade.

Way back, when I was a child, we never had a “No Bullying Allowed” rule. We just had the town bully and everyone knew who he was. I can picture his face so easily in my mind as he grabbed my winter hat and threw it around the bus to taunt me.

Now, we are all grown-up, the bullies, the kids, those of us who care for our grown-up children and parents and dogs. We face problems every single day. The stress and tension are finally catching up with me.

I don’t smile much anymore. It’s tough enough to get out of my warm, comfortable bed with my dog lying beside me. Sometimes, I choose not to get out of bed. I’m okay with that.

Please, I don’t need platitudes or well wishes, I just need circumstances to change. I need a sign, I’ve been patient. Until now.

Yes, I will ask the Angels for help.

I will ask anyone for help. But, so far, nothing has worked. I’m so very tired. I want to curl up in my bed until I see that it is Spring. Things will change in the Spring, for the better. We will make it change, not now, not during the bleak, gray darkness of Winter.

The new us, starts in the Spring, 2015.

 

 

The Big Swallow

Dear Dr. Batman.

Every night my mouth gets dry and I try to convince myself that it is from the allergy pill I have taken. In the morning I can barely part my lips and my whole mouth feels like it is full of cotton, as if I had been at the dentist all night getting painful injections, mouth puffed up and out, red cheeks pulsating with pain.

I swallow carefully, a few times in a row, even though there is nothing to swallow. I reach for the tall glass of clear, cold water with lemon that stands next to me on the wooden bed stand and take a few tentative sips.

Yes, my mouth is dry, check. It is a bit scratchy, check. Can I call it an official sore throat? No. Is it “The Dreaded Eppiglottitis?” Thank God, no or at least not yet. I rue the day that happens to me again, for the third time (or is it the fourth?) My fellow eppiglottitis sufferers know what I mean, they know EXACTLY what I mean; it’s not a pain that you can ever forget. When we get it, we get it BAD, there is no way of getting it any other way. It doesn’t come in light, medium or strong degrees, it only comes in “devastating and horrific.” Believe me, childbirth is nothing compared to this.

Apparently, there is a vaccine that is given to children that could prevent this from ever happening to adults again but no one will give it to us grown-ups. I’ve asked “why?” a bunch of times but apparently “it’s not used for this purpose.” There are a million things used for different purposes that help other conditions not used for the original intentions but help others with different maladies. Why no one will look into this, I HAVE NO IDEA.

Acute catarrhal pharyngitis. The oropharynx is...

I was put on methotrexate, a drug for cancer, when I didn’t have cancer. I had Fibromyalgia and my hot-shot brainiac crazy as all hell Rheumatologist prescribed it to me. It made me feel great, best drug I was on. Unfortunately, it had bad side effects so I couldn’t stay on it but boy, did it help. He thought outside the box and while I couldn’t take the drug, the man was a genius. A crazy, arrogant genius but still, a genius.

Epiglottitis is a bitch, there’s no way around that. It’s a sure-fire way to get the worst possibile pain and a speedy pass to the Emergency Room if you feel your throat swelling up and you have trouble breathing. I don’t think it’s too much to ask for SOME CREATIVE doctors to at least look into the reasons why we CAN’T have the vaccine that is given regularly to babies.

People, doctors, do not want to go out of their comfort zones, even if it is to save people an enormous amount of pain. A medical friend in England asked me why the American doctors were so hesitant to do this, I had no answer. To her, there was an illness and a cure, it made sense. It makes sense to me too. What happened to “First do no harm?” I guess that is antiquated or is now synonymous with “It’s not in my job description.”

That really stinks. Help us, someone, please.

There is only one pediatrician that I remember from when my adult children were little that I can imagine going out of his way to even think about this. He recently returned from helping sick people in Africa. He’s THAT kind of nice guy. Please, Dr. Batman from MKMG?

If anyone, I know you would try or at least think about it, It would mean so much to so many people. Please, will you just read this letter? I know you will do at least that much, I wouldn’t bother to send it to anyone else.

You’ve always been kind to everyone, moms, dads and especially children. Just take a quick look.

Thanks in advance.

Eppiglottitis Mom

Happy

Mother and three children, oil on wood, 38.5 x...

Our family’s circumstances stay the same, unemployment, unwell but managing,regular stuff, nothing has changed. There’s been no formal job offer or no magnificent leap in good health.

My husband had skin cancer removed from his eye brow that required several layers scraped off until there no cancer cells were detected.Yes, it was another bump in the road. We both handled that in stride, well done!

 

I guess we are so used to the ups and downs of life that they don’t quite startle us as much as they used to, maybe that’s a good thing. Maybe that’s the lesson that we are supposed to be learning. If it is, it has taught us well. I know we can handle anything thrown our way, I’m not asking to be tested again and again but we have been tested and we haven’t fallen apart or broken down. We have stuck together, even stronger in our bond. It’s comforting to know.

 

Which means, parenthetically, that on the very (very) rare occasion we hear good, actually GREAT news, it feels FANTASTIC yet very, very new and foreign. A feeling that we both haven’t felt in such a long time that it feels brand new. And, yes, we certainly appreciate it more, now more than ever.

 

So, when our son called me, breathless, to tell me he got into medical school,

 

 

I was at first, speechless. “What?” I said because I wasn’t sure of what he said. He said it again, slowly, my voice rose two octaves ” WHAT?” I squealed and started shrieking, and felt for the first time that all was good with the world and that I now knew what happiness felt like.

 

 

It was brand new and intense and it was a feeling I was not used to. I remember in my mind thinking ‘  so this is happiness’ like bubbles floating inside my head.

But, it was a feeling that you can’t even imagine or dream about because you can’t wrap your head around that feeling and you certainly don’t remember when you felt like that before.

 

When you are a parent, the size of your joy or sorrow doubles when you have kids. If they hurt, you hurt twice as much. But, hearing the joy in their voice, that is better than anything in the world because you are so much happier for yourself because they are happy. I kept reminding myself of this feeling and still do to remember what happiness felt like. It’s so fleeting like a butterfly dancing by you, a wisp of a thing but if you concentrate, really concentrate you will remember, at least part of the feeling.  HIS joy and your own are inseparable. It’s the mommy quotient.

 

Nothing else has changed; it’s all perspective. I’m trying to remember that. Look at your situation in a different way. Express gratitude. Be happy for all the good things in your life, smile as much as you can even if you don’t feel like it. It makes a difference, I know.

 

 

 

Dear Stupid Pesky Migraine,

BACK OFF. No, Really, Back the flippin bleep off. Got it? Good. I’m pretending that you are just a regular, tiny headache and I’m still in full control of my life. Sure, I’ve dimmed the lights, for a cozy, romantic look but that proves nothing.  I just have a minor headache and even though I am squinting, it’s because I took off my glasses so I could see better. You understand, I’m sure.

I’m new to this world of migraines so I don’t have a whole lot of experience, do I take that preventive medicine now or am I wasting it? I don’t know. I really don’t, I guess I’ll wait, in an hour it will be better or much worse.

I know I am tired, I have been tired all day because I didn’t get enough sleep and I wish I could tell you that I had a great time last night drinking and dancing at some fab party but frankly I haven’t been to a party since my sister’s surprise party which really wasn’t that much of a surprise.There was no drinking or dancing there (at least for me) just Jane’s quinoa salad which I hate to admit, I really liked, because she had raisins and craisins and dried apricots in it. Fruity quinoa, who knew?

Why have I recently developed migraines at the advanced age of 57 years of age? I have no flippin’ idea. I got through the first one at the ER after hours of agonizing pain

and finally they gave me a shot of something wonderful so I could get some sleep and the pain eased away so very slowly. I discharged myself after the first round of medication because I wanted to be home in my own bed. My counterpart in the next bed, with the same exact diagnosis, chose to stay in the hospital and get another dose of pain relief.

Can’t say that I blame her, looking back, If I had known then what I knew now, I’d still be in that bed smiling in my safe slumber. I wish they had given me a strong medication to take with me but they don’t trust us normal pain people with “abusive substances” as if one Percocet would put us over the edge. Anyway, all I wanted was to get out of the hospital, infestation hotel of germs and creepy-crawley things.

So, do you really think I needed ANOTHER INVISIBLE ILLNESS to add to my plethora of symptoms because frankly, I thought I had enough. I KNOW I had enough. Is this some cruel joke or do you think this is wildly hysterically funny?

I’m not laughing, I’m disgusted, fed up and sick of all these unrelated illnesses that I keep dreaming about a miracle cure or at least ONE interested doctor that will take it upon him/herself to try to figure it out. Got no volunteers except the mother of a son (who used to be friends with my son) in elementary school. That’s the closest I have and I truly appreciate her interest. Nobody cares, anymore. That’s what it feels like, that’s what it is.

All those one in a million doctors that take the extra time to try to solve the puzzle, I haven’t found one yet and yes, I’ve been looking. Any volunteers?  I will beg if you want me to but nobody is sending me emails or sending me SOS messages that spell out ” I WOULD LOVE TO HELP YOU ANSWER THIS MYSTERY, LEAN ON ME.”

In the end we each have our own shit we have to go through. I sure have mine. Apparently, It will stay mine forever. All mine. Because, in the end, nobody cares, let me introduce you to Medicine 101.”IT’S JUST NOT THEIR JOB, DEAL WITH IT, IT’S ALL UP TO YOU. LOOK WHO IS LAUGHING NOW, IT SURE ISN’T ME!”

Same Old Pain, Now With Migraines

I’m used to the pain I have from Fibromyalgia, it’s not bad most days, no pain killers needed. Sure, there are a few days, mostly weather-related, that it gets worse but I can  stand that too, most of the time. It was under control until one day when I started having a headache that would not go away.

 

 

 

 

I’ve had plenty of headaches before mostly in the middle of my head and that’s how this one started so I thought nothing of it. I took Tylenol, the only medicine I am allowed  (Chronic Kidney Disease) to take, but it did not help. It was a mild headache for two days, I thought nothing of it.

Suddenly, the pain started crawling up on the left side of my face. It settled there like a jumbo jet that had just landed at the airport and was pulling straight into the proper gate. Passengers came off the plane then airline crew, the plane was cleaned and this baby was not going anywhere tonight. The headache had landed.

 

It’s hard to imagine I have another pain symptom but I accept it as my curse, this ugly life of mine. At almost 58 years old I now get migraines. “Welcome to the club” I mutter angrily under my breath, asking: “Why me?”

 

The first migraine, which ended me in the Emergency Room of the hospital moaning in pain and begging for a shot of something, anything, to relieve the intense, hammering pain happened a couple of months ago. “Nice to meet you, meet your new doctor, your Nurologist”.

I thought it was a one time thing, A visit to the Emergency Room, a shot and hydration and two days later I was fine. I went home where the lights were dim, I was safe in bed and all I wanted was darkness and no company, no radio, no television, just black solitude. I laid on my back and pulled the covers over my forehead, yes, this was my safe place, I promised myself the pain was over, gone for good.

Unfortunately, it came back with a vengeance twice more. Once a month ago and one two weeks ago.  I tried all the tricks, the medicine to supposedly make it go away before it really hits, a dark room, breathing slowly, ice, pressure points, Reiki, meditation….you name it, I tried it but it is clinging on to my head with traction and beating harder and harder.

It is now moving to the center of my forehead and the hammer is following after the movement, banging away, beat after beat rhythmically while all I can do is shut down and shudder.

Deutsch: "Kopfschmerzen". Die wohl b...

Deutsch: “Kopfschmerzen”. Die wohl berühmteste – stark von James Gillray beeinflußte – Arbeit in einer Reihe von sechs Blättern “medizinischer” Karikaturen, in denen Cruikshank Krankheiten als Teufelswerk brandmarkt. Erstmalig publiziert: 12. Februar 1819. Originalgröße: 210 x 255 mm (Photo credit: Wikipedia)

I know this isn’t fair, I know that life isn’t fair. I have accepted this new symptom because i don’t have a choice. It has joined the family of maladies that already exist, trapped in every limb of my body, from head to toe.

 

Since I was five I’ve always had a very low tolerance for pain, my parents used to tell me that. If one orange baby aspirin worked on other children to get their temperatures down, I needed two. I am still that way, believe me, it isn’t fun.

Recently, a friend told me to push my Internist to check more complicated Lyme Disease tests and I will do that. What are the chances? I don’t know but I will try. I don’t want to get even remotely excited.

Been there, done that, way too many times. I have no hope. I feel battered.

Enough already. This is getting old. Fast.

 

 

We Are Warriors, Not By Choice INVISIBLE ILLNESS WEEK

I’m not going to lie. If I had a choice of having Fibromyalgia, the umbrella tree illness and all its branches and not having it, I would drop it in a hot fire-searing second. But, like any illness, we don’t have a choice. We have it and the more we fight it the less happy we are.

I do think it takes a long time to finally accept this chronic illness, beyond anger and months of crying, not to mention countless clueless doctors and the raised eyebrows of many who think we are all nuts. I don’t know about you but I want to slap that question mark look right off their smug foreheads.

One of my doctor’s, a well-known person, left me sobbing in her exam room, after diagnosing me with a thyroid condition. I was already on synthroid and still in agony when she clicked her expensive heels, saying “there’s nothing I can do for you” and marched out. She hadn’t diagnosed Fibromyalgia, she didn’t have a clue.  This was eight years ago and the image still is clear in my head.

We are warriors, all of us, invisible illness warriors. You probably have heard of us but you may not know who we are and how we suffer. We don’t offer up the information, and if you know we have a chronic illness you ask in a perfunctory manner only. Our answer to all of you when you casually ask ” how are you?” is “fine.” We always say “fine” at least I do. Not many people really want to know the details and if you think about it you will agree. That’s okay, it takes too long to answer, doesn’t it? “Fine” works for both of us.

If you REALLY want to know there are always  follow-up questions or even a cup of coffee or lunch. We tend to be independent, close to other people who have the same ailment, the ones who know what chronic pain feels like. Some of my closest friends are women  who I have never met yet I love and trust implicitly, met on a Chronic Pain/Fibro group on-line. THESE women and I are here for each other even if only by e-mails, messages or by phone. I thank G-d for these women who are more loyal, supportive and loving than some of my so-called “friends.”

Radical illness

Radical illness (Photo credit: Wikipedia)

We know that there are more cloudy days than sunny days. We don’t expect sunshine all the time but even when the sun is weaving through the clouds, in and out, we appreciate the moments. We whisper our thanks in a hushed silence, trying not to let those dark clouds come further down and overwhelm us. It takes effort, I know.

 

 

It’s the in-between season now, we haven’t had that first bite of crispness in the air yet, like the bite of a fall Macoun apple, but, as evening comes rolling in, and darkness shrouds the trees, you feel the rain that is soon to come. You feel it in your bones, they ache due to broken wrists or ankles, the weather forecasting of having Fibromyalgia.

We can’t change our world, we can barely change our body. What can we change? A few things, our diet (no, I won’t give up coffee and ice cream) and our attitudes, different doctors. I could write a book on the doctors and methods I’ve tried. Let’s face it we are stuck, but we are alive to see our children grow up, a dog to love and for the dog to love us back. Having my dog rest her head on my knees or stomach makes me incredibly happy when I have to lie down. She is a rescue dog but really she also rescued me.

 


Dedicated to my dear friend, Judith.

 

 

 

 

 

 

 

I Want To Be Melissa Rivers’ Sister

One day or another

I turn myself inwards, hiding from the world.

I don’t want to go out and make small talk, my friends don’t feel like real friends tonight and

blood, it turns out, happens to be thicker than water, even when blood types are opposite.

The news on television is too scary to watch and I take on too much of it.

That’s when I have to force myself to extricate my sensitive soul and feel alright

snuggling under the blankets for a day, maybe two, listening to music or trying to name my new pink pig stuffed animal, stroking her soft cotton skin.

Imagine a soul without a name. What shall I call her? Suggestions?

The sun is setting earlier and earlier, things are the same but they are not.

I see a very long Winter ahead of us, I don’t even have the energy to groan.

I can’t blame it on Fibromyalgia either. I won’t.

My birthday month is on, even early, I don ‘t care about getting older, I still love birthdays and I am not vain.

Wrinkles are graciously earned, gray hair are few but I don’t hide them anyway. I am the warrior that they present, I earned them.

My children are now adults perfectly able to take care of themselves without us, both a blessing and a curse. I still miss them as I see mothers posting their first and second graders first day back to school pictures, excited grins and new outfits.

I think we have done well in parenting them, we are both so proud of them, we shine.

Suicide, brain tumor,  starving herself, no will to live, and now Joan Rivers? I don’t know but now I wish I could be Melissa’s sister

so she has somebody with her, to support her.

Nothing is fair, deep down, I still expect them to be at the end.

That’s the very immature part of me that won’t grow up. I can’t seem to learn this lesson even as it presents itself over and over again. Why? Why CAN’T I learn this?

I too, would wait for my mom to wake up, cracking a joke. But, my mom would NOT want to be brain-dead, that I know.

We all deal with pain, grief, discomfort, sadness and people really DON’T reach out to give a hand, I think that is what shocks me the most.

No one makes the time, they have themselves to consider first, last and in-between.

I am not sure who I am anymore, who I’ve become.

Maybe, just maybe, I’m disappointing myself, maybe I have become one of them too.

Nothing would surprise me anymore.

Nothing does.

Fibro Life, Friday


Please, just let me sleep, don't find me...

I am too tired to keep my head up, I tried to make good on advice to get out more. As Fibro patients know, I’m paying the price. Minus two spoons. I owe two spoons from tomorrow, not that it really works that way, right fellow spoonies? We really can’t win either way.

I generally never complain about Fibromyalgia, Savella and Tramadol usually do the trick but then again, I haven’t pushed myself this hard in a long time. I really have to ask myself if it is worth it? When I am racing around town, doing errands, getting my hair cut, drinking a strong cup of coffee, going non-stop I am NOT able to handle it because apparently now, I am a wreck, a demolished car on the side of the road, Not one part left, it’s sitting up an embankment totally crushed.

I have given the same advice to my friends “don’t do too much” but I didn’t listen to myself today because I was on a new mission to “live, to explore, to get out of the house.” Yep, I overdid it.

I might be so tired that I can’t even eat dinner. Nah. Who is kidding whom? I’m sure I will perk up after food, I smell chicken breasts on the grill, the salad is on the table already, I’m chopping tomatoes for bruschetta. But, really, all I want to do is to curl up in a ball and somehow loosen the muscles in the back of my neck and fall asleep. I don’t see that happening nor do I see myself cleaning my room and organizing it.

Let me stay here, in the midst of my bed, covered with clothes and freshly washed laundry, next to my calendar and my phone and a pink and blue pen. I will push things aside in a corner, I won’t complain, not a sound will come out of my exhausted mouth except the sweet snoring sounds of an overtired, head-throbbing, weak patient.
Don’t tell anyone I am here, I am so broken I don’t want to be found. I just want to sleep. Shhh, please just let me.
* Two images should have appeared, if no images appeared, I will let zemanta support know again, feel free to join me. Thanks in advance. If they both appear, I will be delighted!