Fibro Girl, Grey’s Anatomy And Me

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.

I Can Barely Find My Shoes

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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.

The Map To Nowhere Fast

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I have a weird feeling of unrest and stress, slimy blue- green and flourescent orange winding its way around my brain is how I picture it, how I feel it. No soothing colors of white and yellow and beige. Fake colors, unnatural.  I frown more than I smile and as hard as I am trying to focus on the positive it’s not easy. There is so much going on in my life that it’s hard to focus. I don’t think it’s just me though, I think it’s a lot of people.  It’s a feeling, not a good one, somewhere between the roads of anxious and depressed, stopping at weary.

There are natural disasters all over the world and I am sure we all feel, not only heartbroken for other people, but scared. There is too much sinewy stuff whirling around and no happy place to settle. What happened to my “happy place” images? Why am I only seeing the rain battering the purple flowers instead of the blooming of the flowers alone.

There is tension inside my house, we are in “the sandwich generation” that I used to read about. It isn’t fun, it’s scary. The “baby boomers” who have restless teenagers and aging parents who are alone or ill or depressed. I am that “baby boomer” now except I have the added affliction of my own “chronic pain.” Fibromyalgia and Hashimoto’s Thyroiditis do not do me any favors, I walk along slowly, painfully, I stumble through different medications and expectations. Very low expectations.

I also have narrow-angled glaucoma which is a dangerous disease or as one unfriendly opthalmologist put it “you could go blind in an instant.” Quite a bedside manner, don’t you think? Needless to say, I stopped going to him. It’s funny that I barely write about this condition, maybe it’s pure, frigid fear. Maybe there is only so much pain I can handle. My brain and eyes get hammered, with laser shocks, every few months by a doctor that I once believed was very good. I don’t think so anymore. “In twenty years of practicing, I’ve never had a patient whose eyes kept closing up like yours do.”  Every time I go to the city he lasers my eyes again, because the hole he drilled into me has closed. He does this procedure either in his office or in the hospital with no pain relief; imagine barbed wire going through your eyes and brain, quickly, twenty or thirty times in a row. The eye drop he casually puts in gives me incredibly painful headaches (migraines?) I do know that the pain I feel is barbaric, no pain medications, no anesthesia, no break. Over and over again; fast and furious.

The gray, dreary day does not help me since I feel overwrought and unfocused. I am dealing with both chronic pain, (Fibromyalgia, Hashimoto’s Thyroiditis) and new back pain that feels like my back bent and broke itself during sleep like a twisted pretzel you find in any mall. I am trying to accept my life for what it is, both bad and good, often simultaneously. Change is in the air like a dog-sniffing a new scent, it’s just hard to predict when and where things will happen.

I read an article in the NY Times today about a young couple with a young daughter. Each parent has cancer. That, is a problem I say to myself, not the dreary workings of an often too-emotional, anxious and pain- filled mind. I am so sorry Nathan and Elisa. You and your baby have my prayers because perspective is the greatest gift of all. I will speak no more.

say narrow-angled glaucoma 5x fast on pain meds

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my head is aching, laser like thunder striking inside my brain and down the right side of my face in a fast repetitive motion. don’t move, there, up, left, stay still. darts are being thrown directly into my eye by this rapid fire machine gun. a special hateful drop is given to me at the end for my shattered eye, throwing me, head first, down the crooked, chipped stairs straight to a migraine in progress.  doctor had to cut iris, no anasthesia and it was right near the nerves of my eye. lucky us fibromyalagia patients come prepared, had one old pain pill in my crusty, gray bag that has too many confusing pockets. the medicine did nothing. i have been suffering for too long,  in twenty years, my dr. boasts he has never had a patient like me before. i feel like i should at least win a prize or break down and cry uncontrollably. maybe both.

i am finally home in bed now but my right eye is glued shut and i am not allowed to open this eye tonight. i am cold and have winter blankets trying to protect me from pain and chills but they don’t do a great job, yet they are trying so hard. blame me, i cry, blame me. i am the arbiter of all diseases chronic and unknown and erratic, unusual, the  “rarely happens to……” it is not surprising that i don’t i feel special; tonight i have plenty of pity. problems with my eyes, ears, tmj, chronic pain, joint pain, foot pain, all the time. struggling not to become one with the symptoms but i feel like i’m wrestling with myself in thick, mixture of quicksand and mud. once in a while i want to just sink deep and let my breath come out slowly and simply float on top. i am tired of fighting, i’m tired of the pain.  i just want the pain concerto to cease playing. tonight i feel pain on my pain. if my head wasn’t above the blankets i would hide beneath them, though crying is difficult with just one eye.

who is this young stranger i ask from three feet and thirty years back. the one that used to shimmy in tight jeans and black leotards and confidence amid conversations of the psyche and e.e.cummings and the book review section of the ny times. i was a traveling girl until they clipped our wings; but most of all i was a dreamer.

my dog is sleeping peacefully on my feet. i woke up at 4 am today, perhaps with nerves but also with an incredibly optimistic attitude. optimism kicked me again in the face like a feisty pony named speed. i didn’t see the pain coming, speed kicked me from behind and sent me flying to the ground bruising every bone. every already aching bone and muscle.

i have all these strange, out of the ordinary afflictions but special is not something i feel. now i feel sad and sulky and in miserable pain. music which usually calms me grates on my raw nerves. stop complaining, i admonish, this is not life-threatening but it is painful and lonely as all hell. i miss my husband’s reassuring voice and soft, gentle hugs. i know i can survive on my own, always knew that, but it is nicer when he is there beside me, and not on a business trip, gently reaching for my hand. i miss normalcy if i even remember what that feels like.

i look forward to slow down the grumbling monster that is the pain in my head and shooting  down half my face. why am i not normal. why are there bizarre afflictions attracted to me like bees to golden honey. i am too tired to shoo them away because i have been robbed of energy. so they stay, circling me, viscious black buzzards landing only for their meal and my life.

Fibro Frights And Fatal Fantasies

 

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I messed up and didn’t realize that the PFAM’s ( Patients For A Moment) blog carnival deadline was by midnight tonight. The subject was fear. I’m wondering if deep inside I just didn’t feel up to writing, competing, finishing or if I was dissassocating myself from the project. I was going to talk about the web of anxiety and how it feels when it starts to swell in my stomach. It always starts in my stomach beginning with a slight twinge, quickly advancing to panic and anxiety. My arms and legs feel tingly and somehow not connected to my body, I am alternately hot and cold or both together.

The first time that queasy sensation started was the summer before my freshmen year at college.  I was eating dinner with my family in a fancy Italian restaurant in Queens, NY.  I couldn’t eat, I couldn’t speak, it was the first time I had ever felt anxious and I remember calling it “cold dread.” How could I explain this new, horrible feeling when I had never experienced it before? How do you name something you do not know?

Those fearful sensations in my body became like a close cousin to me. We lived as if we were conjoined; I could not separate reality from frightful fantasies. It was something that I have learned to live with and deal with.  I started with a tiny germ of truth and blew it up out of proportion. There was no stopping my obsessive worrying, nothing helped: warm milk, hot baths, reading a book, distraction.  I remember a time when I was sitting in the trolley in Boston and thought what I had whispered to my friend was overheard by someone else and I became overwhelmed and frightened. What if? What if? It became a wakeful nightmare for me.  I did a lot of catastrophizing back then and even now, once in a while, it still tries to creep into my brain. I need to forcefully push it away, as if an intruder was about to enter and I had to slam the door hard, with brute force.  Sometimes that is enough, sometimes it isn’t.

My cousin’s stomach ache could be pancreatic cancer,  my sister’s low throaty voice could mean she was manic, my narrow-angled glaucoma could make me blind in a second.  I worked with a hot-headed, explosive employee that I thought, for sure, would bring a gun to a grievance meeting and shoot us all. I remember strategically seating myself closest to the door, just in case. I lived in a world of tragedy, of horrendous outcomes, death, madness, cancer, stroke, coma, terrorist attacks, murder, mayhem and more. “Health and welfare” is what I worry about as I tried to succinctly wrap it up like an adorned Christmas present, perfect silver wrapping with a tight red bow.

The truth of the matter is that now we DO live in a fearful world and something COULD happen.  Fear perpetuates fear and even while  I am writing this down I feel the first fingers of anxiety like a gray mouse with darting eyes. I take deep cleansing breathes. I ask myself questions: “what are the odds of that happening?” The media doesn’t help: “Don’t go to public places when you are traveling in Europe” What? Of course we would go to public  places if we were in Europe. Is too much information just too much?  I refuse to watch the news on TV before I go to sleep.  The only thing we can do is try to push the worry aside and live as normally as we can; even if it takes enormous strength and effort. Carpe Diem as they said at Boston College where I worked: Seize The Day, as best as you can.

Who Am I?

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Am I more than the sum of my symptoms or less?  It started with menopause, the entire disintegration of my body. All of a sudden my thyroid became underactive and I thought I had achieved a state of false bliss. Just add Synthroid and  I will be able to eat AND lose weight at the same time” Well, as it turned out, not exactly. The image of every foodie fat girl eating AND shedding pounds like my hairy mutt sheds her fur was not accurate, I was disappointed. I was  in pain all the time, my favorite phrase: “I feel like I have the flu but without the fever.”  I ended up not just having an underactive thyroid but I had Hashimoto’s Thyroiditis, an auto immune disease of the thyroid, basically my own cells were attacking me. My internist nodded her head and said “there’s really nothing more I can do” and as I lay there sobbing, undressed in the exam room, she clicked on her brown high-heeled shoes turned swiftly and marched out of the room.

One doctor led to another and another all with differing points of view. The second Rheumatologist  diagnosed me with Fibromyalgia but still, my aches and pains continued.

The third hot-shot doctor specialized in RA and Auto-Immune Diseases. “Fibromyalgia” he said, “that’s nothing but a lazy diagnosis.” We treat the auto-immune disease, straight and simple. Of course, not that simple. He started me on Methotrexate which helped but landed me in the hospital for my second bout of Eppiglottitis and possible lung damage. I develped a 24/7 cough, asthma and breathing difficulties, the pain from the Epiglottitis was excruciating. Several prescriptions and an inhaler later I came home.

They stopped the Methotrexate and he put me on Cellcept which worked well, with the exception of intense intestinal distress that forced me to stay in the house (and close to the bathroom for 8 entire weeks). I complained after four weeks and hot-shot ignored me and said “stay on it another four weeks” and like a fool I listened.

If I was rich I would go to the Mayo Clinic but having had no income in a year, that rules that out. One day at a time? How about one moment at a time? Today I stayed in bed, napping and trying to calm my internal self. Part of me wants to kick and scream and fight, the other part is too tired and weak to even imagine it. Along with the aforementioned symptoms I also have narrow-angled glaucoma which is very serious, interstitial cystitis, TMJ and a connective tissue disorder as well as a balance issue. Who have I become? When did all all these symptoms become me?

My latest blood tests come back next week and with it, I hope, will be some helpful information. I am tired of being tired, sick of being sick. I feel horrible when I fall and my two sweet children and darling husband come racing up the stairs to see what happened….again.

Help me, fix me, try me, define me.

What Is Not There

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I was thrilled to be going with my family and in-laws on a 5 day cruise to Bermuda, courtesy of my very generous in-laws. It brought back all sorts of memories that I hadn’t thought about for many, many years.  I remember that 12 years ago my parents treated my sister’s family and my family for a cruise to Bermuda. It was a family vacation complete with my parents, my sister’s family and us, and most importantly “the cousins.” Four little fresh faces, all shiny with excitement, a boy and a girl for both my sister and I: 5, 7, 8, and 10 who love and adore each other. After that trip, they would always be connected and they still are very much so today.

I have a photo that I cherish of my sister and I that shows our happy faces and wind-swept hair. Our brown hair blends together and although we look completely different, this photo just smiled “sisters” and love.

I remember 12 years ago we were all on deck as the boat pulled away from the dock.  There was yelling and whistling and waving, and total excitement; sometimes I wish life could have stopped at that joyous moment but we go on anyway as time wills us, forces us to do.

Twelve years later, my husband’s parents (who felt sorry for us) treated the four of us and them to a 5 day treasure of a vacation, again to Bermuda.  What a difference time makes and it passes so quickly you barely have a moment to stop and think. This time, when we pulled away from the dock, I went outside to look and cheer, and I couldn’t. I didn’t even think of this as a factor when I went outside but as soon as the boat started moving, I felt sad. It was so emotionally charged for me that it was surprising to me and so unsettling.  I couldn’t speak, couldn’t even cry, I just felt numb yet able to feel this horrible and powerful feeling of complete sadness. I went inside as fast as I could, not walking, not skipping but running as fast as my aching body let me. The skyline looked empty with the devastation of the twin towers. How could I enjoy the view when the twin towers were not there?   They were in the background of our first trip; there was nothing now.

It also reminded me in a painful way that my dad was not with us; he passed away 9 years ago but the pain felt fresh and raw  and stabbed me at different moments, like it did years ago. Time does not change that type of pain, it hides, it tries to fool you, but once someone dies that is special to you, life as you have known it, is gone forever.

It’s been a long year, of unemployment for my husband and the pain of Fibromyalgia and Hashimoto’s Thyroiditis for me. Add narrow angled glaucoma, TMJ, chronic pain, and a connected tissue disorder and other unresolved medical problems and that has been my life for the last, long, 4 years.

Back home now, we are enmeshed in back to school errands. Our son is a Senior in HS this year, our daughter is a Junior in HS. Next year there will be another change, that will be wonderful and heartbreaking and empowering and positive. Our son will leave for college, our daughter a year after. I am cherishing every moment that we spend together but I know that there will not be enough time for me. This vacation created new memories for the four of us, ordering room service, having dinner together every night, laughing. These are the memories I will cling to, in my heart, forever. Time goes by and I with it, looking forward, looking back, trying to ride the waves as they rise and fall, rise and fall.

Running Away: My “Rachel Green” (Friends) Moment

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It’s no secret that being an adult can be very stressful at times for a variety of reasons. It could be parenting, it could be employment or unemployment,  marriage, illness or a combination of the above.  Parenting, to me, is utterly delicious but not always easy especially when you have two teenagers in High School at the same time.  Adulthood in itself can also be extremely overwhelming; you are older and things are not as easy as they used to be.  Everything is harder and more difficult however, if you live with a chronic illness. Your energy level is low, you feel weak, you feel pain, tiredness and sometimes sad and discouraged. That is the world I live in.

My husband and I had agreed to meet for lunch in the city where he was working.  I was coming from one of  many doctor appointments and feeling very discouraged. I think I had been to my  Opthamologist who had to relaser my eyes for the umpteenth time for my narrow- angled glaucoma. Or,  It could have been to see my Rheumatologist who is in charge of auto -immune diseases for my Hashimoto’s Thyroiditis.  It could have been both.

We ordered our food and then I excused myself to go to the ladies room. Once I got inside I saw a big, wide open window,   leading to the street. Yes, I admit it,  I had a moment. I had a Rachel Green moment ( for those of you who don’t know the tv episode of Friends, she climbs out of the window at her wedding and runs away). For a few seconds I pictured myself climbing out that window;  I was absolutely stunned. Shocked. Eerily quiet.  For a split second I thought to myself, “I could just leave through this window and escape.”   I saw myself in  France or Italy,  eating warm, dense, freshly baked bread, pulling it apart and dunking it in olive oil.  I laid in the soft green velvet grass surrounded by leafy, gorgeous trees and rolling hills. There were wildflowers of every color, purple, yellow, pink and white.  I was alone. I was another person and, I was happy, feeling marvelous and buoyant and free. Free of illness, free of worry, I had just stepped into the colorized version of my life; I had entered into my own personal  Wizard of Oz.

No one could have been more shocked than me!  I shook my head quickly at the notion, but as I was returning to the table (and confessing to my husband) I still saw that image in my mind.  The sweetest thing was the feedback my husband gave me which was “I don’t blame you!!” I would NEVER do it,  would NEVER leave my family, but the fact that the thought popped into my mind was absolutely startling.

My husband and I finished our lunch and my husband led me to the train, the pain in my eyes like sharp, steel wires under attack, unable to see clearly and with a severe headache that pounded  the entire right side of my face. I stumbled to  Starbucks and bought a cup of coffee and a densely rich, moist,  brown sugar and molasses cookie for the ride. As  the train doors shut, I settled in, seated next to a window, in a chair facing my home and away from the city. Taking small, sugary bites from my molasses cookie I tried to relax.  My back nestled in the old, worn, smelly quilted chair. I sat quietly, listening to the  slow, chug-chug beat of the train like a song that was stuck on only one phrase, repeatedly. I sat in the train, the 2:48  that was delivering me back home.