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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Decluttering My Life

Clutter

Clutter (Photo credit: marlana)

First, I thought I might be a hoarder, and believe me I am in no way making a joke out of this. I read that hoarding starts with keeping sentimental things. If that’s how it starts then I am in big, big trouble. If I look around my house, though, the clutter is really just in my bedroom and my (once) big walk-in  closet. You can’t walk into it anymore. I ‘m scared, truly scared, as I look around my bedroom filled with Diet Snapple bottles and magazines, candles, plates, lavender moisturizing creams, piles of paper… I need to breathe, I  need to breathe.  Other rooms in the house “look” fine, for example: the living room but my room and my closet are humiliating and filled with junk. Boxes and boxes, laundry baskets and laundry baskets filled with everything but laundry.

If I declutter my house, will my head and heart be clearer too?

Lately, I have misplaced things too. My keys, my sunglasses, my plane ticket,  lipstick, my book, my jacket. Also, recently I have been very stressed out, emotionally. This is MORE than my nemesis Fibro Fog from Fibromyalagia. I misplace one thing after another, panicking and starting the cycle over again. There has to be a connection here I’m trying to slow myself down, so far it isn’t working. It’s not amusing when I “lose” something, my daughter helps me find it, ( I always find things,) I misplace things rapidly. I need to slow down.

I can’t deal with anything when I am feeling so overwhelmed. I need to start cleaning and organizing now, actually yesterday. I feel the stress in my stomach. I always feel stress first in my stomach, is that just me or does it happen to everyone? The tender points in my neck and shoulders are all raw, tap me lightly on a tender point and I will let out a blood-curdling scream. Last week the edge of my husband’s sleeve brushed against me and my scream was so awful and so loud that it scared both of us. Damn disease.

Next morning: I can breathe a little easier today, I really did work myself into a panic but once I started organizing my room and recycling a lot of papers and magazines I felt better. There’s still a lot on my mind, I don’t feel settled yet, but even if I make a tiny bit of progress it will make me fell more in control. Of everything. I will need to work things out, in my head and in my heart. I will do all that while I am cleaning, because cleaning will give me more control, I just feel that. I can’t be wrong. Can I?

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.

February, Freezing

Weber Grill

Weber Grill (Photo credit: Moomettes)

Charles River, 3 February 2010: Thicker ice ag...

Charles River, 3 February 2010: Thicker ice again, and snow-covered under cloudy grey skies (Photo credit: Chris Devers)

It is gray, gloomy, my mood matches what I see, another storm approaching wet, wintry, cold ice, it pushes my hopeful thoughts of Spring and red tulips further back in my exhausted brain. I long to paint my toes pink, to wear flip-flops that go clickety-clack on the street, even imagining that sound in my head makes me grin. Foolishly, I’m dreaming about back yard barbeques, the smell of food grilling, earning its succulent stripes, that charcoal smell, chicken, corn, cheese burgers, hot dogs. We always have way too much food when we have friends and family over for a BBQ: potato salad, coleslaw, fresh, crispy bread, four different kinds of cheese, at room temperature, salsa and bread, mozzarella and tomato salad with a drizzle of olive oil and fresh, fragrant basil. Hummus and pita triangles and fresh vegetables and dip for our own vegetarians. Potato chips, pretzels to tide us over, pasta salad too with veggies chopped up so fine you can barely see them. We’re always too full for dessert but that passes quickly. The dessert table includes: chocolate mousse cake for the chocolate lovers, vanilla and coconut cake freshly baked brownies, my home-made banana bread with chocolate chips and raisins, fruit salad, a cherry and apple pie. Marshmallows are a given; I like mine burnt completely on the outside, charred, the inside still gooey, runny and soft. Ice cream is in the freezer just waiting to jump out and join us.

I am so happy and…oh wait, I forgot. It’s still February and ice is hitting the windows like little rocks of torture. Reality is difficult. The gusts of wind are my enemy. Let me keep dreaming, please but I know I can’t. I don’t want to leave the house in this cold weather with my bones and muscles stiff. The tender points all over my body from Fibromyalgia are raw with pain, even if I brush against someone’s sleeve. Shoulders lifted, up high, stuck in tension, held in place like soldiers in the military, standing in front of their Sergeant, First Class, saying ‘Yes, Sir, No Sir.” On demand,  feeling unnaturally stiff, not able to make a move, praying they won’t have to sneeze or cough. There is no room for error.

I am staying up late tonight, I smile because it’s my favorite time, 11:11pm.; what a gift to see that on my clock. Somehow, 11:11 AM just doesn’t do it for me. I miss sleeping deeply, the way I was able to do, now I sleep lightly and it is not restful. I don’t know if it’s aging or a medication or a phase but I don’t like it. Maybe if I stay up really late, my sleep will be deeper, my dreams fanciful and memorable, in shades of purple and pink and yellow. Of course, yellow.

It’s been a long winter already, and it continues, I know it’s just February but it seems like it’s been February forever. The weeks seem to go by fairly quickly but the months drag as if they are ground in cement. They drag on like a tired tortoise in heavy, deep, wet sand, barely moving a centimeter every few hours. I know the lesson, I do, we have no choice but to accept it even if we feel angry or impatient, Mother Nature wins. I need to slow down, my impatience will not do me any good. I will try another approach, perhaps I will make lentil soup or pea, start to read another book, listen to music and be grateful I can stay inside today, in a warm house, cooking, cleaning and stroking my red dog’s fur.

Spring will surprise us when it’s ready, not when we are, that we know for sure.

Fibromyalgia 2013 – UPDATE

#Fibro - Awareness Day

#Fibro – Awareness Day (Photo credit: sand625)

I’m being a bad patient. Yes, I’m confessing. I have a doctor’s appointment with a new rheumy (as us Fibro patients like to call them) a new rheumatologist in about a week and I think I am going to postpone it. Again. My old rheumatologist who I do indeed love, takes about three hours to get there and back, usually more, and this one is only twenty minutes away, I’m getting lazy. However, this is the height of flu season and I really do not want to expose myself to the “flu factory” that is my doctor’s office. It is not just one office, it’s two buildings of sick people for every specialty in the world. It’s a factory for any illness you can think of. In addition to having Fibromyalgia, I also have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis. Just glance at me and I will catch it.

This is a tough choice. Had I been feeling extremely poorly now with Fibro I would surely go for the appointment but the fact is I’m feeling pretty good. (I know, don’t jinx it) It’s the first time in many years that I am NOT complaining about aches, pains, moving or walking. SHUT UP! my friends will say but no, I cannot. Of course, I still have Fibro Fog to the extreme (really scary) and I am on enough medication to kill a horse but this last combination of drugs apparently is doing a little something-something. You guys understand…

Sure, I suffer from the tender points, but I don’t even count them, they are as natural to me as getting up in the middle of the night to pee. I accept it. And yes, I have all the other symptoms of Fibromyalgia: IBS, tingling, headaches, “yada yada yada*” but overall I feel better. I’m not asking for fabulous, I’m just satisfied with better. Better to a Fibromyalgia patient is like a miracle, BUT it is a miracle for however long it lasts. I think a lot of it has to do with my endorphins being raised quite a lot. Wish I could say it was from exercise but let’s not get too crazy here. It’s the result of medication, and no, not-self medication.

Right now, I’m just appreciating feeling a little different, in a positive way. I want my Fibro friends, and the newbie Fibrosmyalgia patients to know that it is, indeed possible. Don’t give up hope, maybe one day you will feel better too with the right combination of medicine. Keep fighting. I know there is no cure but you need to trust your doctor, or team of doctors and they need to believe in YOU.

For now, until it changes, I am happy, fine, content. Do I think it will stay like this? Probably not. Do I hope so, definitely: yes. But, as we all know with Fibro, we have absolutely no control over anything, which really is the hardest part of all.

Let’s wish each other a whole lot of luck.

If you have questions for me, especially those who are new to Fibromyalgia, feel free to ask, I’m happy to help.

*yada, yada, yada from Seinfeld

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.

Hope, Lost

fibromyalgia awareness

fibromyalgia awareness (Photo credit: veganjoy)

I am feeling funky today. Not funky ha ha, funky bad, I get those days from time to time. Fibromyalgia and chronic pain are to blame. There are days when I have a really good attitude about my chronic pain disease, Fibromyalgia and I say things to myself like “it’s not life-threatening” to keep me sane and balanced and aware, even grateful. Then there are nights like tonight where my face crinkles in uneasy frowns and my smile has disappeared as if I have two very different personalities. This “me” is not happy, and this “me” is angry, pissed off and ready to rumble.

Tonight is a night when many of my Fibromyalgia on-line friends/sisters in solidarity, are on-line, I read their blogs, they read mine.  There seems to be a lull in energy for all of us, a low in satisfaction, an overall feeling of just wanting to give up and an off the wall chart on pain levels. We have had enough, all of us. Yes, we know we have the illness, yes we will never get rid of it, yes it hurts and clouds our minds so much that our children look at us as if we have dementia. It’s called Fibro Fog.

I’ve never been overly concerned with my age, 55, but I am disappointed and disgusted in my physical limitations. Between low blood pressure, Hashimoto’s Thyroiditis and Fibromyalgia, I don’t have a lot of energy. Other times, I have balance issues, always I have pain. At some point in the day or night, pain wakes me up in the cramping of my arms, in the battlefield of my legs. My husband passes by me and by accident his soft, cotton shirt touches one of my tender points and I scream out in pain. He didn’t do anything wrong but just the touch of the fabric was excruciatingly painful. It’s not fair and yes, I am whining tonight.

I’m tired and cranky and cranky some more. Oh, p.s. IT’S NOT IN OUR HEADS!

My jaw hurts from TMJ, my stomach hurts from IBS, my hair falls out and I can’t get a good night’s sleep which is imperative to my health. I can’t win, we can’t win. I feel  impatient and eventually I will settle down but now I just want to be angry at how my body has failed me. You know it’s true.

No, I don’t want platitudes, I just want to vent and say that I know it could be much worse but for now, it isn’t exactly like a walk in the park. I have a puppy, she needs to be walked, she needs to run but I can’t run with her. I take her on short walks when I can and sometimes I just throw her a toy, from my lying down position on the couch. It isn’t much but it is something. Still, I feel like a bad puppy mommy.

I had to have a brain/spine MRI because my imbalance was so severe that I fell flat on my face and knees outside with nothing to trip me. I’m seeing my Rheumatologist but I KNOW he doesn’t have the answer. He believes me, he cares, he tries but I know he can only do so much. Part of me wants to throw away the medicine I am taking (Savella) and see how bad it is without it. On the other hand, I’m scared to do that, I’m a little better than I was originally. Just not good enough.