It’s Not Just Peanut Butter And Jelly Anymore (Food Cop)

I’m hungry, borderline starving. I know that’s a fairly regular experience for me but tonight I am ravenous AND I have to be careful ABOUT the texture of what I eat.

 

I’m having a flare-up of everything that could possibly hurt, especially now with my jaw, teeth, head and neck.

Having a vicious battle with TMJ  AND a cavity that needs to be filled, I thought I would be cautious and eat soft food. Since I was not feeling well, all day, light-headed, dizzy (reason still to be determined with the dreaded TILT test) my husband was kind enough to bring me a peanut butter and jelly (extra orange marmalade on the side to be mixed in) sandwich. For a side dish there was a tiny amount of mashed potatoes, leftovers from last night yummy restaurant. Oh yes, there was sour cream and butter in those “mashlers” as my dad used to say and as part of my family still says.

The amount of peanut butter and jelly is crucial to any perfect sandwich, bearing in mind everybody’s personal preference. For me, more jelly and less peanut butter is the way to go. My husband and our friend John in the neighborhood, put staggering amounts of peanut butter on their sandwiches (“There IS NO such thing as too much peanut butter in our house”) John said. My husband, agrees. He slathers on peanut butter and measures it in inches. I disagree. I’m a more jelly than peanut butter kind of girl.

I was having a bite of mashed potatoes, on the side, following a bite of my sandwich (the color of the jelly and the taste is carefully matched too) when I noticed a wonderful, soothing, comfort spreading taste in my mouth and stomach. After two or three bites of the sandwich and then the mashed potatoes I was sure that a combination sandwich would definitely ease my pain.

Wait for it, my friend, Maureen, because you KNOW it’s coming….

Hence, the peanut butter and jelly and mashed potato sandwich was born. Don’t prejudge, it is the ultimate in comfort food. The peanut butter and jelly or jam is cold or at room temperature and the hot mashed potatoes, sans gravy, are warm, buttery and rich.

It was love at first bite. I finished every creamy morsel and would have eaten more if I had more to eat. I have had in the past peanut butter and jelly with cheddar cheese and once I had a peanut butter and jelly combined with tuna fish sandwich but those are a little too much and way less comforting than my new, favorite combination.

Mashed Potatoes!!! (Photo credit: Manuel Alarcón)

It’s a win-win situation. How could it not be fabulous? The greatest in comfort food.

Sure, I make a mean chicken soup, or lentil soup, those are all   eaten mostly in the Winter. But this new combination?  Adding mashed potatoes as an ingredient? A genius idea of comfort in a bite. In every single bite.

 

Something Was Wrong, It Was Me

High Anxiety (Photo credit: Wikipedia)

It arrived every evening like a suspicious stranger, its presence like black fog slipping under the door. It was deceiving at first, mist, started slowly and then it changed in a split second and attacked me. I felt like I was being stabbed with an ice pick, repeatedly, the chill of cold anxiety running up and down my spine. The goal apparently was to shock me and knock me totally off-balance. It won, I didn’t stand a chance.  I don’t know why it came. I certainly didn’t invite it nor could I prevent it and its malicious presence only showed itself to me after dark.

I don’t know why it happened and I never completely understood it but the displeasure was here, every single night. I tried every trick I knew: deep breathing and meditation, but I did not stand a chance, it felt like I had been swept up by a tornado. Actually, I  lived in the eye of that tornado, I felt helpless, yes, out of control, out of control, out of control…

In past years during this same time period I felt sad, weepy. In the past eleven years I have known grief and a feeling of longing but not anxiety. Major life events happened, I felt loss , my dad was deceased but fear? This year without the regular Thanksgiving plans, control escaped me and anxiety with its octopus legs strapped me in and squeezed me so tight I could not breathe properly. Maybe Thanksgiving, without check lists and red lines crossed off made me feel undone. Would it be five people or nine? Last minute? I used to be so flexible, what happened to me? I missed feeling in charge, in control. I was alone in the world, it put me off-center, dizzy with fright.

I had trouble sleeping and eating and with my chronic pain disorder, Fibromyalgia, I questioned if this could have been a flare-up? Very possibly but I don’t know. The physical pain is the same but the IBS and the anxiety are on over drive.  Anxiety rolls in my stomach like one of those slippery aqua blue water park slides that I hate, wet,  flying down way too fast. I went on one of those once when my children were little and pleaded me to go on one of the rides with them. Trying to be a good mother and show them that fear should not stand in one’s way I relented, seeing their shiny little faces. Big mistake. I laid on my back and flew down the twisting spiral of hell screaming all the way down only to see them at the bottom, laughing. “Why did you lie on your back, Mom, didn’t you know that is the fastest way to go down?” OF COURSE NOT!!!

I felt like I have been on that water slide for at least two weeks except in my head and my body. I’m in my own zone of panic. Nothing worked, nothing helped, my last resort was to try to listen to music which has helped in the past. No luck. Maybe I’m just so excited that tomorrow I will be seeing my children, home for the holiday? Maybe I am feeling out of control not knowing if we will be five or nine people? Or maybe the last four, stressful weeks have finally caught up to me: my husband got laid off, I had to have painful uterine biopsies and on the way to my doctor’s appointment I had a flat tire. I found out my friend and her husband both needed surgery, I took on my friend’s problems too.

Maybe I’m anxious now because I couldn’t allow myself to be anxious before. The food lists are really not important, there will be plenty of food, no matter who comes. My friends will be fine. My husband will eventually find a job and we are not living out on the streets. My tests results came out perfectly. AAA apologized for dropping my call, twice and they paid for the private road side assistance. I’m taking a deep breath, it feels good. All of a sudden, I feel like listening to music and I’m getting a little tired. That’s got to be a good sign. I hope.

# FWF Gratitude, Kellie Elmore

wonderful nature have a nice weekend and a beautiful 3.advent dear friends (Photo credit: Wikipedia)

Listen, Love, Give Thanks

It was my birthday last month, I bought myself a small cup of creamy coffee with a crisp twenty-dollar bill and whispered to the cashier “let others use it up until it runs out” she looked at me with a blank stare. That was a birthday present to myself, the best kind. I felt happy to be able to do a small act of kindness. I walked out grinning. Giving. Joy. Love.

Today is dreary, rainy, and glum. I have turned my loud music off, there is no noise in my room except the ringing in my ears, the sound of my fingertips on the keyboard and airline jets flying overhead in the sky. I imagine they are traveling to exotic places: Bali, Greece, Japan? A couple of newlyweds are on their way to their honeymoon, holding hands and sipping champagne, kissing each others pink lips lightly. I was young once too.

The rest of the next hour is a gift. I have the luxury of peace and I relax on my bed with my sweet red dog, Lexi, wrapped around my legs. Every day has been long, arduous, bringing some medical testing, and waiting for results, a flat tire, silly and stressful things. Finally, Friday, I get results, I can give thanks that all has ended well. I send hope and light to my friend who is also facing challenges, we haven’t talked in years but now we talk daily. Support, Understanding, Old Friends.

I listen to the sound of my breathing and try to slow it down. Inhale slowly, Exhale slowly. The weather is damp and my arms ache with soreness just from raising them, my body is the barometer for all things; fellow patients with Fibromyalgia nod their heads “YES.” We understand when the weather changes before the news weather forecasters have any idea. What a waste of a job, why not just hire us at a fifth of the cost? Many pillows prop me up like a hospital patient, fully clothed, drowned in six comforters for warmth. I try to release pain and tightness from every limb, bone, muscle. I try. It doesn’t work. I’ve accepted that, there is no room in my life to fight. With age there is wisdom, I’m grateful for that.

Maybe I don’t have the highs and joy that we used to have in the past, a gratifying status of being “Mom” with sticky kisses and playing with cars or having tea parties, those days are far gone. But, I did have them once, a long time ago. It is not the good times we had in the past but also not the bad times that may await us in the future. I can’t possibly complain. Yes, my husband was laid off and I haven’t been in the best of health for the last seven years but we are dealing with the situation. A word of advice: Just count your blessings and not your sorrows. Thank G-d, Nature, or Angels, whatever you believe in, that you are alive TODAY. Enjoy today as much as you can because we cannot count on a tomorrow.

Embrace your spouse/partner or friend, child, mom, dad, grandparent and give thanks for what you do have and don’t waste a minute focusing on what you don’t have. Hug your cat or dog, Buy a present for someone you don’t like, maybe there is a reason why they are so cranky, see what happens. Everyone has a story, listen. There is always someone who has it worse than you do.We are relatively healthy, our adult children are coming home for a visit and we will have a turkey on the table for Thanksgiving. We give thanks for what we have.

Flare-Up Friday

Cluster headache (Photo credit: Wikipedia)

DEDICATED TO ALL MY FIBRO FRIENDS

My world is gray and I feel like a dull-looking ice-cube. Last night, I knew something was going on in my body, things were changing. After all these years you would think I would know immediately the signs of a flare-up but I look for excuses. Basically, I lie to myself. I’ve had small headaches for a week, usually at night, all of a sudden that changed to a more serious headache. My balance which is not good became much worse. I needed the pink cane to be able to walk without falling. Anyone looking at me from behind would have sworn I was drunk. I wasn’t.

My husband said I “didn’t look right” I’m not sure what that means exactly but apparently I didn’t look “good.” For two days before this I had (note past tense) been feeling great (as great as one can feel when you have Fibromyalgia.) I had showered, dressed, out the door for two days in a row, fairly early, running errands, taking photographs, shopping, meeting a friend. It’s not like I was doing a triathlon, just regular things that most people don’t even think about. But for us Fibro warriors we, unfortunately, need to think about everything.

I was proud, feeling strong. Then, I crashed. My back was aching ridiculously, of course I blamed the uncomfortable chair at the restaurant. My appetite certainly didn’t suffer, If I’m hungry I must be fine. Two trips to the women’s room, a little unusual but nothing to even think about even though I knew deep inside it was IBS. I blamed my muscle aches and bone pain on the weather. My general feeling of discomfort, I was sure was from not drinking enough water during the day and not eating enough.

Yes, you got it, I was trying to pull a fast one on myself. I was trying to fake what I really knew was starting: a Fibro Flare-Up.  “Nooooo: I groaned to myself. I had done so well, I was outside a lot, with nature, trying to keep a positive attitude, all the things I am “supposed” to do. I was eating well,  healthy things like salads, drinking cranberry juice, no soda or diet soda, and eating fruit, veggies with yummy desserts but essentially all good things. I hadn’t gained or lost weight, my blood tests had all come back normal.

Even my green eyes felt heavy, tired and looked dull. I flunked the “eye-ball virus negative test*” known only to a few but it is a definite indicator of sickness vs. health. I knew my color was certainly not rosy thought it never really is but it had that “look” the one moms (and some dads) see on their children’s faces in one second begging the immediate question: “are you feeling okay?”

I was cold, so I went to bed early piled under a massive amount of blankets, (6) and tried to get warm. That was a hard one, I was still cold. Took two aspirin for my head (not allowed to take Advil per my doctor which I now long for like a junkie) and tried to go to sleep. When I woke up this morning, the headache was still there, I was still freezing and I couldn’t get out of bed.

I sighed, I knew what it was all along. I just pretended that it was allergies or my imagination. Do you do that too? Well, it didn’t work. So now, it’s Saturday, I’m under six blankets, still shivering in my bed with my headache, my husband brought me coffee in bed and I’m under the Fibromyalgia House Arrest. There are no colors in this room and basically it hurts to move. If you need me I’ll be here but for now, I think I’ll take a nap. I’m too tired from just waking up to do anything but sleep.

*eyeball virus negative test: a diagnosis based on a game about rapid movement from your eyes, going left to right and back etc.

PFAM- The Stress of Having a Chronic Illness- Fibromyalgia

Fibromyalgia Awareness (Photo credit: Kindreds Page)

When you have Fibromyalgia stress is part of your life, it’s your face staring back at you next to the definition of “stress” in the dictionary. Wait. What? What were we talking about? I don’t remember, it couldn’t have been too important. It doesn’t matter. I had a good morning, the pain in my arms only woke me up twice during the night and it wasn’t bad at all getting out of bed if you don’t include the dizziness that happened when I tried to get up.  I actually was able to go out and do an errand, even two. My energy level was okay for an hour and a half to two hours! Then, the boat that is my life, sank like the Titanic. There were no survivors. That always happens. I should get used to it but I can’t. Maybe it’s Fibro Fog or pure denial but when I crash in the afternoon, every afternoon, I crumple like a rag doll and need to lie down. I can barely make it up the stairs on my own, the stair rail helps me up as I plod along slowly. It happens every single day. Maybe Fibro Fog and forgetting are better than acknowledging my sad, interrupted life.

My stomach aches, It’s probably IBS, or irritable bowel syndrome as we Fibro patients know, we get pain THERE too, it’s a classic symptom. Stress only makes it worse, where did it come from? We are not exactly sure, some say it’s from Fibromyalglia, some say it’s a gastrointerology disease, other say stress. No matter what, we can’t win.We can run to the bathroom with stabbing pain or basically not go at all. Pain all around. You can’t help it, there is nothing you can do but wait it out. Just an added bonus of Fibromyalgia, just one more question mark that will never be answered. It limits where we can go and when, which in itself is stressful. We have to plan or not plan at the last moment. Friends who understand call in the morning and ask “are we still on?” or “let’s see how you feel in the morning.” For every friend like that, there are two friends plus family members thinking or saying, “you should just exercise/eat gluten free/lose weight/gain weight/go holistic/ try acupuncture, get a massage etc. They are so strong in their feelings and I know it is out of love but I have stopped trying to defend myself and just let them talk as much as they want. Since it’s the 100th time, I don’t fight anymore, now I just pretend to listen.

This insidious illness has not only interrupted our lives, the lives we once had, but for me, divided it into two. Before Fibromyalgia and After. We mourn our old selves to a point, some people still hope for a cure, but I don’t. I need to focus on my new reality, the pills, the pain, the realization that I cannot do many things that I was able to do in the past. That sometimes I feel like half a mother, half a wife, that I have the energy of a cockroach, let me correct that, the energy of a nearly dead cockroach because those things can be feisty.

I am not feisty anymore but I once was. Those were the early days when I could describe myself, without hesitation, as HAPPY but also young. I remember saying that, though conjuring up the feeling now is so much harder. Luckily, when I had my children I did not have Fibromyalgia but they don’t remember all the running around, playing, swinging and rough housing on the floor we did because they were so young. That to me, is heart breaking. Ask them now, as young adults and I’m sure they will remember “Mommy is in bed, she doesn’t feel well” or “Mommy is sleeping.” Ask any mother who has Fibromyalgia if that’s not the tipping point for her. It was for me.You want to help your children until you become old. Fibromyalgia makes you old, makes you feel old and useless a good deal of the time. The stress of life continues and it waits for no one especially us. There’s not only physical pain with those of us with Fibro but emotional pain too. We are not who we used to be. Does anyone ever think of that?  We are half of who we were. People with Fibromyalgia don’t get a “do-over” we don’t even get a chance.

My Voice Returns Softly

Cherub (Photo credit: Mr Mo-Fo)

I haven’t been able to write a cohesive sentence since the viscous killings in Newtown, Ct. I’ve started more than a dozen pieces but they have all been left, to age, in my computer like a piece of green, moldy cheese. I felt like my soul had been snuffed out, like a lit candle, and until today I could not put those sentiments in words. It was too devastating. While I think of those babies, young, innocent children every day, I’ve been forced to realize that life, does indeed, go on.

There is something about young, innocent children that tears apart the hearts of every mother and father in ways that are indescribable to others. As a mother of two, now grown children, it is the worst thing you can possibly think of and more. I over identified and was consumed with the sadness that those families are going through. The thought of God having more angels didn’t comfort me at all. The unfairness and the brutality shattered me internally. Many others have written about how they feel about the incident but unless you are a parent, there is no comparison. It’s something you can’t possibly understand and there’s NO judgement, it just comes from a very different viewpoint. It’s almost like saying that someone who has a cold and feels sick is just like a cancer patient, because, they both are sick, that may make NO sense and that is the point.

I decided this morning that my life has to go on and all those other posts can stay in my computer for as long as they want or at some point maybe I will finish them. But, I needed to tell you why I’ve been silent for so long. Yes, a week, to me, is a long time. For those who know me, I’m sure they can guess the timing given my sensitivity. This silenced me like nothing else could. Part of me wanted to jump into my car and drive to Newtown to offer my condolences to anyone there but I don’t think they want tourists now to gather and gawk. My prayers, love and healing thoughts have already been sent from my heart. I know I will go there, perhaps in the Spring, and pay my respects.

I need to move on and to find the joy in life, the funny times but in the past few weeks I’ve also been physically sick either from a Fibromyalgia Flare up (Fibro Flare-Up,)  IBS, stomach bug or a combination thereof. This started way before the Newtown incident and hasn’t resolved itself yet. Eventually I will drag myself to the replacement doctor (who you know is filling in for your own doctor, who is sunning herself in St. Martin with her family) but that can wait until after the Holidays. I feel fine. I’ve lost weight and some of my appetite but I can handle that. My jeans never looked better on me.

It is time to look ahead. I want to laugh, appreciate my family that is here nestled under our roof. It’s great to have the kids back home for college break, I love the noise and liveliness that they bring. It’s time for all of us to look forward to 2013 which I sincerely hope, will be brighter than 2012.

Haiku Heights-Pain

A Pain That I’m Used To (Photo credit: Wikipedia)

A knife through my hand

crimson blood pouring out fast

A heart, numb, frozen.

*****

No contact, no love

Babies without touch, react

Doubt, afraid, for life.

*****

Your breath near mine, close

the beat of our hearts, different

Tears tell our story.

*****

Brittle bones, swollen

raw, excruciating pain

A Fibro Flare Up.

Sadness 90/365 (Photo credit: SashaW)

*****

Alone, we will be

No guarantee in life, death

Be at peace with One.

I’m On Fire In A Fibro Flare-Up

I’ve been working through the pain of Fibromyalgia for the last few months; today it caught up to me in a bad way. I couldn’t move, walk, take a baby step. Even when I sat down on my pale green modern sofa, my feet ached and throbbed and wouldn’t stop hurting. Drugs don’t seem to help me but sleep does. It’s only 7:00pm and I am forcing myself to stay awake even though I am lying down on my bed, stiff and unable to move. I need help to get out of bed, I am grateful for my husband who comes to my rescue. Very grateful.

I am yearning for sleep; to pull the extra blankets over my head and feel my body try to release its tension and pain. I’m hoping the pain will not wake me up tonight, will not tug at my shoulders or send stabbing pain up and down my legs. I need a night off from pain, just one night and then I will be ready to trudge through the pain again, like walking uphill through a windy snowstorm. It isn’t easy but if it has to be done, it’s sometimes possible.

Everything tonight is black and white, food, books, conversations, life. I am trying to relax my muscles but it is not working, maybe I am trying too hard. I am not sure I know what the word relaxation means anymore since my body feels like an overworked metal machine; I am the Tin Man from The Wizard of Oz, still searching for some oil.

After many years of believing in the magic oil, the magic pain relief, I have given up on believing in a possible cure. I don’t care about the naysayers either, I know what I feel, what many of my friends feel. Who wants to advertise or brag about pain? Not I.

I compliment myself on my attitude, still having a sense of humor, still looking forward to a piece of a chocolate chip loaf from a nearby restaurant. I have plans to watch Modern Family with my husband on-line to keep me up 26 minutes later before I beg for sleep. I accept what I can do and what I can’t do. There is a handicap rail for inside my new, deep bathtub. My daughter looked shocked, embarrassed: “Mom, please don’t tell me we are having handicapped bars in the upstairs bathroom.” “Yes” I said quietly but firmly. “Why?” her teenage self asked. “Because I need them, honey” I answered. She had the grace to turn away so I could not see her embarrassed and troubled blue eyes.

I need to use handicapped rails sometimes, like I also need tea with milk and honey in the winter and bright yellow daffodils in the springtime. All of these parts represent me, not just one. Like I need my morning coffee, now known as “a red-eye” a strong cup of coffee with a shot of espresso, it doesn’t define me but it is part of my routine in the morning. Fibromyalgia and my autoimmune disease, Hashimoto’s Thyroiditis are just parts of me; the parts of me that suffers with chronic physical pain. I have to accept that but I do not have to let them define me.