Fibro Girl, Grey’s Anatomy And Me

Grey's Anatomy (season 1)

Grey’s Anatomy (season 1) (Photo credit: Wikipedia)

When I think of “Fibro Girl” I imagine a small, spunky superhero with brown hair and round black glasses and a red cape that has a big bold black F on it. I don’t know why I think of her that way but it amuses me. Maybe because it’s such a juxtaposition between her life and mine. She is trying to fight Fibromyalgia with her strength. I have NO strength. When I was FINALLY diagnosed with Fibromyalgia, seven years ago, my strength was taken away.

Our lives with this illness are question marks. It is hard for us to plan ahead. In fact for me, it’s impossible. For people who DON’T have FIBROMYALGIA OR DOUBTERS (seriously? still?)  I am physically unable to commit to a date in the future without the caveat “depends on how I’m feeling.”  People who cannot understand that are not true friends. We didn’t ask for this, we wish we didn’t have it. Believe us.

My current experience with Fibromyalgia is that I am able to do one errand per day, MAYBE two. If I push my limit I’m wiped out and pay for it later with exhaustion/ pain. At the moment I am not suffering as much physical pain as I had in the past. (see past Fibromyalgia posts) There’s always some pain but I have learned to accept and manage that pain because of a great doctor and the right combination of Fibro drugs. Now, doctors are worried about a new “balance issue” which has nothing to do with Fibromyalgia.  More tests, a pink cane….I can’t walk a straight line, two perfect CAT scans. Can we stop now? No.

Fibromyalgia takes control over us. I’m embarrassed to say that I never thought about it that way. Amazing how our lives change so quickly. If stress is indeed a factor, I’m in deep trouble. My husband got laid off 2 days ago. I can’t work even though I want to and we need the money but it’s not possible. It doesn’t seem right to punish us for something we physically cannot do. Not right at all.

We don’t live in a perfect world, although I really do know people who live a charmed life in every aspect of their lives. Lucky them, maybe they have dark secrets but I doubt it. All I want is a break in having to struggle every single day with some new illness or symptom. The umbrella of Fibromyalagia has so many illnesses underneath it I go to the doctor(s) way too much.

Right now, with the weather is getting colder. I always feel worse when it is cold outside. Then, a good time for me is staying in bed with my dog lying next to me, watching Grey’s Anatomy, Parenthood or The Voice. The television has become my life line. That and this computer connecting me to friends with Fibro and without. We do the best we can with what we have. Minute by minute, day by day. We’re in it together, holding hands, on-line and off.

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Escape To The Bedroom

8773 - St Petersburg - Hermitage - Aphrodite

8773 – St Petersburg – Hermitage – Aphrodite (Photo credit: thisisbossi)

I’m so tired, my eyes are threatening to close and go on strike forever. I see puffs of clouds through jagged corners of my weary green eyes.  Believe me, I don’t want to fight you, I just want to go under my covers and sleep. It is the fourth day of gray, cold, damp weather and I try to pretend I am not even here. My Fibromyalgia tender points are raw, if I even touch one gently with my soft finger I scream with pain. It’s as if a rainbow of sharply pointed colored pencils plunge deeply into my tender points with the power of a strong hammer, the tip of bold silver needles aiming for precision. There is no cure and no release, not on these cold, damp days. Welcome to my chronic world.

I am taking a trip now, escaping under my blankets, where I belong. It is warm and sunny, I regret not having stronger sun glasses.  I am wearing a short, dark blue denim skirt that I haven’t been able to fit into for 20 years, I have a white V neck short-sleeved top with stunning embroidery around the lace yoke, a colorful beaded necklace around my neck, blue, yellow, pink, purple beads held together with silver strands. I am wearing silver sandals and freshly painted pink toes and I am smiling, happily. I move my head to catch the breeze and my hair feels like it is joyously dancing. I am not alone.

My lips have just been brushed, my breath stalled, the lightness of butterfly wings with unfamiliar lips brushing mine and lingering for a second too long to think it was an accident. It is just a touch, which makes my heart start to beat rapidly, and I have  t rouble regulating my breath. Both of us linger, for a second, in the air as we try to understand what just happened. That first question of possible romance and sexual curiosity being stirred up after such a long time. Who knew that they still existed? I thought they were gone forever, I fooled myself into thinking that because it made my dreary life easier.

‘I feel awkward and shy, my cheeks blushing pink, childishly and I try to hide my face from my new love but he misses nothing. He curls his hand and gently strokes my cheek, lovingly as if I was a precious gift. He looks at me as if I am his treasure, I don’t remember feeling like anyone’s object of worship ever before. This is separate, a later in life gift, a precious offering that I am trying to fight but know I will attempt to struggle hard and eventually may give in. Who doesn’t want to feel loved and sensual and appreciated? Who doesn’t want their body to be stroked so slowly and lightly that all your senses awaken like budding flowers from the long, dark, icy winter. I have never heard compliments murmured in my ears, whispering loving phrases as if my body and soul were a beautiful sculpture, more beautiful than Aphrodite.

I am yours, under these covers, in our world, in my head. You keep me alive, you make me vibrate and tingle until I can imagine I will see you the next time. We both long for that, sometimes not having the access immediately intensifies the passion, the lust. I want our eyes to meet again, the first second of shyness, the second of hunger, of greed and then…..’

Someone is pulling on the covers, intruding on my safe world, someone is screaming for me to” wake up.” No, I don’t want to leave but leave I must. I don’t want to return to that world with its gray dullness seeping into every molecule of my ordinary self. My brain is dead, my emotions flattened; I am jealous of my own fantasies.

PFAM- The Stress of Having a Chronic Illness- Fibromyalgia

Fibromyalgia Awareness

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.

I Need Help: Fibromyalgia-TMJ

closed TMJ

It’s a pain like no other, hard to describe, impossible to treat, at least for me. Falling under the Fibromyalgia umbrella, TMJ is like lightning striking your ear and jaw straight through your brain and head. It kept me up all night; no pain-killer helped it, no heating pad, ice, soft foods.

The pain shoots, there is no warming and no treatment that helps; I didn’t eat any hard foods yesterday. My jaw usually pops and goes back into its socket; I live with that. I was a bit worried about the Presidential election but not enough to be awakened all through the night in utter agony as if I had been shocked by electrical wires, moaning and groaning all night long. I was restless, weary and I hurt so badly; I toss and turn to see if lying a different way will help. Nothing works.

Even though I have had Fibromyalgia for years, the varied symptoms (maybe because of the cold weather?) are worse now. I wish I could scream out loud and get it all out of my system but I can barely open my mouth. I try not to speak, to hold my lips a certain way; I pretend I am a model who is posing for a sculptor who is doing an impression of me in burnt-red clay. I can’t move my lips or my mouth for him to get the correct shape so I try to relax my mouth, my muscles until I find a single spot that doesn’t make me cry out loud. I try desperately to hold that same place so I don’t scream; I am just asking for tolerable not even for feeling good.

I have dealt with many of the other symptoms of Fibromyalglia in an accepting way as possible but nothing has been as urgently painful as this. I’ve been to ENT’s (Ear, Nose and Throat Specialists) convinced I have had flaming ear infections until the diagnosis was always the same. TMJ.  Now, I no longer go to the doctor, I know what it is and I huddle under blankets, drink liquids through a pink striped straw and pray for the pain to subside.

Those of us with this chronic pain disease have so many different symptoms, yet there is usually one or two that affect us the most. This is one of them for me. Pain, out of nowhere, unexpected, usually starting in the middle of the night and continuing as long it takes. I’ve tried the mouth guards (sort of), I’ve tried heating pads, I’ve tried deep breathing and meditating. TMJ lurks in the quiet of my brain and body and jumps out of the darkness to scare me with its razor-sharp accuracy. It attacks with no warning, no signals. Unlike migraines, there are no warning signs. This, I find hard to deal with, hard to surrender to so much pain for however long it decides to stay. For once, i am helpless in this situation, I feel disempowered and small, the pain has caught up to me and it is winning.

Plinky Prompt: Skydiving: Would you do it?

  • Falling in the Sky
  • Seriously?
    Skydive Skåne I am a 55 (soon to be 56) year old woman with Fibromyalgia, a chronic pain disorder, I have an Auto-Immune disease and if I even look at my wrist or ankle the wrong way, it breaks. The answer is LOL, no I would not do it. I have a hard enough time making it through the day as it is. But, I admit it is a funny thought to imagine.
    When I was young I considered doing it but I never followed through. It wasn’t a very serious thought. I regret many things but this is not one of them. My son went skydiving when he was 18, I just about had a heart attack until he was safe on the ground. I hope my daughter doesn’t copy him but I am afraid she will….maybe she will have more sense?

Not My Child

Alone

Alone (Photo credit: Pink Sherbet Photography)

I went back to my Rheumatologist today with the help of my husband, driving me in to the city. This summer I haven’t had the energy to be able to take a train anywhere much less drive to the nearest train station. I’ve been so tired and so filled with pain that I can’t even imagine the days of yore when I used to go to the city by myself FOR FUN, for excitement, to sit, grinning, sipping iced coffee,watching people or seeing a new movie. I cannot manage the steps up to the platform or down them, I can’t even think of the service elevator that grumbles so slowly and so infrequently and is so small, smelly and lifeless.

The quality of my life, in the last six months, has deteriorated, rapidly. I’ve tried to keep it out of my head, to ignore it and not to complain but the evidence is clear now. I’ve fallen, out of the blue, directly unto the ground smashing my face and knees, I’ve been severely imbalanced, I’ve even used a cane that I keep in the car. My pain levels are at an all time high and I complained to my doctor that I thought Fibromyalgia symptoms were supposed to stay the same, not get worse. “They get better, they get worse” he said diplomatically, this being the worst he has seen me in years. Cranky, unsmiling, complaining and saying “ouch” every time he touched a tender point on my arms and legs. I hurt everywhere and then some. I have interrupted sleep, pain wakes me up so I don’t get enough rest to heal during the night and I’m frustrated, angry and sick of it. It’s almost six years now.

The only thing, THE ONLY THING, that shut me up quickly today was the sight of a mother and her daughter sitting in the waiting room today, noticing that the daughter was the patient. I will remember this daughter’s face forever. She looked definitely younger than her years, she said the word “bi-coastal” at least five times, almost to prove out loud that she did live away from her mother. She looked about 15 but was probably in her mid twenties. Her two braids made her look younger, the sound of her high, squeaky voice sounded child-like and the way she moved looked awkward, clumsy, painful; something was definitely wrong, missing. She stepped gingerly into the doctor’s office alone like a wounded fawn.

I shut up completely, quieted my misery when I saw this young woman, this frail young woman.  I would have this frustrating disease called Fibromyalgia five times worse if it meant my daughter or son go through it. I would have it worse for this young stranger I had just met.  I looked at my husband and he looked back at me, we understood each other. I stopped feeling sorry for myself in a quick, NYC, second. Let me have the pain, just spare the children, I can take it, I will take it, just let them be healthy and happy and let this poor young woman find some answers and relief too. I am a mother, I hate to see any child hurt and suffer. I hate to think that this young wisp of a woman feels anything like I do. That would be so wrong, it upsets me deeply.

The Separation Between Pain And Pain

snake

Pain woke me up from a deep sleep, as if someone was crossly shaking me awake. It started in the middle of the night, doesn’t it always? I felt sharp, stabbing pain that started behind my ears and shot down to my jaw line like bursts of fireworks you want to watch but not feel. I  moaned out loud; the pain was unbearably familiar but I hadn’t had it in a long time. Labor pains, during childbirth, at least give you a couple of moments rest in between contractions and a beautiful new baby as an award but this did not. I would try to sleep for a minute or two and be awakened by searing pain, inside my head, like a steak being branded on an open fire. TMJ had come back with a vengeance.

I have noticed that my Fibromyalgia symptoms, soreness of legs, feet, joints, muscles, pain everywhere on my body, have been at an all time high. I wonder if it has anything to do with the weather changing since it started so suddenly, or all the stress building up in the last three months or is it just random torture? Maybe it’s all of them, together. I can take medicine for the pain but we all know it just doesn’t help. Nothing does.

I know it doesn’t seem to make sense but I don’t have the energy to take a train to see my Rheumatologist, I’m sorry, I’m just too tired. Patients with other type of  illnesses may not be able to relate to this but chronic pain patients understand. They understand all too well about Fibromyalgia Flare-Ups. “What’s a Flare-UP” you ask? Ah, obviously you don’t have Fibromyalgia and I am jealous of you now. I understand though, it happens all the time. I would not be a good Fibromyalgia Ambassador right now because I tell the truth. Physical and emotional pain are closely connected, they join together like two vapid snakes curled around each other. You can’t have one without the other. Pain is here to stay, it never goes away for long, it comes back like the univited guest that crashes a party with drunken rowdiness. Pain is here to stay; wrap your mind around that.

Yes, There Is HOPE For Fibromyalgia

Wildflower

I have made a lot of friends on some of the Fibromyalgia support groups on-line. I was diagnosed with Fibromyalgia about five years ago. Five years that have crawled at a snail’s pace, going backwards and forwards, up and down, down, down. I wanted to write this blog post for all my fellow Fibromyalgia sufferers and tell you that while there may not be a cure, I have improved.

I never thought I would be able to get out of my bed and get to the bathroom without all the serious, horrendous, stiff, and chronic pain I have had for many years. I never expected perfect, I don’t now, but I do know improvement and I have improved. I almost want to cross my fingers while typing this so I don’t “Jinx” myself, I’m sure all of you can relate to what I am talking about.

I will always have good days and bad days, that is a realization I have accepted. I have taken, in the past, probably about thirty different medications in different combinations and this is the fourth Rheumatologist I have seen (and will continue to see.) While your Doctor does NOT have to be your best friend, you should feel that he/she believes in you AND in Fibromyalgia as a chronic pain disease. That’s very important. The Rheumatologist I went to before this called Fibromyalgia a “lazy diagnosis” and attempted to treat my pain with dangerous immunosuppresant drugs that made me sick as a dog for months at a time. He did this because combined with Fibromyalgia, I also have an auto-immune disease called Hashimoto’s Thyroiditis. I didn’t know better so I followed his advice and took seriously harmful drugs at a dosage that should never have been prescribed. This old Doctor was a genius, but not in Fibromyalgia and not in being pleasant and understanding. As my present Doctor put it referring to my old doctor “it’s his way or the highway.” Don’t accept that.

I am now on a combination of drugs that not only treat my symptoms but also have treated my energy levels. I am NOT running any marathons, believe me and I have flare-ups that still can make me cry, but overall, at least on some days I am better. Please, do not give up hope, do whatever you have to do to find a good Rheumatologist and only a Rhematologist that believes in you and the disease. One where you feel that he/she really wants you to get better and that they truly do care. Don’t settle for less.

We all deserve better and I just wanted to say to all my on-line friends (Hi Graceful Agony Ladies, Chronic Babes, ohmyachesandpains, etc.) please don’t give up and thank you for always being there for me; I love you all.  To friends that are new or newly diagnosed I NEVER  thought I would feel any better and now I do. How long will it last? I have no idea. I have accepted my limitations, I accept that I will have bad days as well as good but I can say for sure, that compared to how I felt five years ago, I am better. My attitude is better too.

If anyone is interested in which drugs work for ME, I would be happy to tell you. Don’t give up, I almost did. If you are new to this and don’t know how you are feeling or if you are feeling mad and angry and sorry for yourself; go ahead, you deserve it. Been there, done that and try to stay in the present, not the past or the future. As my dad used to say to me “Be in Neutral.” It’s a life lesson from my dad that has stayed with me, try it, it might help you too.

The Sum Of Me

Henri Matisse, The Dance I, 1909, Museum of Mo...

Image via Wikipedia

I am part of an internet group of dear friends who also have Fibromyalgia, a chronic pain disease. We generally talk about the effects of this leech, this parasitic illness and how it makes us feel and how it affects our lives. It is what brings us together; and we truly care about one another. Imagine, a group of people who you have never met yet you trust them, seek out their advice. These people really do know how your pain feels.

We could discuss things we used to do but cannot do now. For me, I would talk about gardening and how I used to have a big vegetable garden many years ago when bending down to my knees and getting up was no problem. I would reminisce about the bright green English peas that grew, the fiery red cherry tomatoes that bathed in the sunlight, two kinds of lettuce and thick, orange carrots. I could also talk about the three miles I used walk in under an hour with my work friends each day, outside, around a blue-green reservoir. Maybe I would confess I was a size eight for about two minutes and twenty years ago while I was struggling with infertility issues and the deep, emotional pain of that process. “If I couldn’t have children, I was going to be skinny” was my mantra as I made myself march outside.

The summer before I was diagnosed with Fibromyalgia, and my children were at camp, I would take the train to New York City and relish being surrounded by people from all over the world, hearing them speak, watching the beautiful, colorful outfits that so many people donned in shades of rose, green, yellow, blue, shades of white and grey. Perhaps I would see a Broadway show for half price, go to a museum, or back to the Village and try to recognize it after many years. Going in to the city was like having an international picnic without even leaving the gleaming Grand Central Station.  I didn’t worry back then about getting to the city and how much walking I would have to do and whether I had to take a cab because I was so tired and drained that I couldn’t put one burning, aching, painful foot in front of the other.

Many blogs I read are about chronic pain and diseases, and I wonder at their brilliance. It’s a dilemna for me because while I do write about my chronic illness or two, I write about everything else in my life.  Am I doing myself a disservice? It could be. I write about food, depression, fun, family, television, friends, travel, grief, cheesecake, chocolate etc.  It’s a mix and mash-up of a blog, like a patchwork quilt with different patterns and colors. Do I need to define myself more clearly?  I may have just answered my own question. I am all things, not just one.

I am a patient, a parent, a friend, wife, mother, teacher and student. I love many things: reading books with beautiful covers, writing, taking photographs of children or benches or boats. I love to watch red cardinals and yellow finches at my bird feeder and butterflies winking by me. I love to eat good food, I am sweet on sweets, I dislike alcohol; coffee, orange juice, chocolate milk or Diet Coke are my beverages of choice, I drink them all at different times.

I could choose to pick one subject to write about but, it would not be my true self, of that I am sure. I am all over the place with emotions and experiences, flying, sometimes crawling, like red, yellow, blue and black kites sailing in the gusty wind, all tangled together, or in peaceful harmony, sometimes independently flying free. I am a person, with many  facets. I am as many pieces of my puzzle as I want. It’s my puzzle, I need to make the pieces fit,  for me.

I Can Barely Find My Shoes

NYC - Metropolitan Museum of Art - Abduction o...

Image by wallyg via Flickr

The darkening skies have lifted to show off a mild blue sky and yellow buds on naked trees. I was up all night suffering from IBS (Irritable Bowel Syndrome) which seems to have some connection to my Fibromyalgia though I don’t really understand it. At 4am, being a mother of two teenagers I became a child myself. I was alone in the house except for my dog and the children fast asleep downstairs. I was in a lot of pain and sometimes pain takes away my judgment. I go online to see if any of my friends are there because I need to talk to someone calm, motherly.

Luckily my friend, Michal, who lives in a different country, is awake and I ask her the same things I know deep inside. It is the same advice I would tell my children or friends or my spouse to do. The fact that she is awake and talking to me calms me immediately. She tells me to drink Coke and to stir the bubbles out with a fork or Alka-Seltzer, baking soda and water…..I tiptoe down the stairs and I am overjoyed that I have found a dusty yet unopened bottle of ginger ale to drink. In my race with pain I had totally forgotten the right things to do. It was her being there that made me feel better, more than the few sips of soda that I swallowed in the dark.

We all need people sometimes, whether we have a chronic disease or if we are perfectly happy and healthy. I have Fibromyalgia and Hashimoto’s Thyroiditis and Narrow Angled Glaucoma but it took these diseases to learn to ask for favors. A few weeks ago I asked my friend Sarah to go with me to the city because I would not, without someone’s help, be able to make it home if  my eye doctor needed to do surgery at the Eye Hospital. It was hard for me to ask her, but I did, and I needed her help desperately. It taught me the balance between being independent and dependent and the fuzzy middle line we all try to achieve. I don’t think twice about offering help to a friend or an acquaintance but feel awkward asking. I have relied on my husband for the last two years, when he was home, unemployed,  to such an extent that I needed to relearn my own skills and find my independent self again. I had lost her, she was hidden in piles of soft, flowered comforters, next to pre-made cups of coffee and the security of my husband’s endless amount of hugs.

I am glad I have found my old self again because I  need to make decisions and be responsible for myself. At the same time I am glad I can finally ask for favors when I really need them. I don’t like having all these illnesses and I don’t like that my husband is working five days a week far away from me. I do like knowing I can handle things myself, even if I do need help once in a while from a friend. There are so many decisions to make in a single day, so many minute details that I actually trip over them every so often. I get out of bed in the morning, slowly, with aches and pains and I do everything I need to do when in fact I can barely find my shoes. Sometimes there is a strength that we all have inside that enables us to pull ourselves together and go through the day and the long nights. I am not always able to do everything on my own and I do need help at times but I am happy that I have rediscovered me, balanced albeit sometimes unsure.