Loving The Ocean, Settling For A Lake?

Dear Fibromyalgia,

Another loss, another dream dashed, this one really hurts. All my life my dream was to live in a small house near the ocean. It was my fantasy, the one thing that I could think about when I felt a little down or when the Winter seemed unending.

Rainbow Waves

Rainbow Waves (Photo credit: The Uprooted Photographer)

Someday…I told myself, I will live in a beach house, and swim in the ocean. To me, the ocean is life, it is majestic, magical. It is the one source of pleasure I can count on, always.

Ever since I was a child my favorite activity would be to collect shells, to feel their shape between my fingers. What were the dominant colors? I used one as a “worry stone” others shaped like hearts I would give to my children. Another one with a little hole on top, I used as a necklace.

Seashell

Seashell (Photo credit: Moyan_Brenn (back soon, sorry for not commenting))

When I was hot, I would drift into the ocean between the two green flags and submerge my whole body and head into the oncoming waves. I was not a timid swimmer. I loved to jump wave after wave, it was thrilling for a scaredy-cat like me. It was adventurous and bold for someone scared to take chances.

In the water I was brave, confident, and happy. It was hard to get me out of the water but when I came out, usually under protest, I was out only until my swimsuit was dry, and then I went back in. I never had the patience to lie in the sun just to get a tan. Never. If I was in the sun for more than three minutes, it was far too long.

The beach was MY place. My secret place. I can’t even allow myself to have the fantasy anymore which saddens me. I have no balance and no strength since I got Fibromyalgia, seven years ago. My life was stolen from me, little by little. The last time I went into the ocean was in Florida, three years ago, with my daughter, and I couldn’t get up out of the water. I kept getting thrown under, again and again until I couldn’t breathe.

Fibromyalgia Eye

Fibromyalgia Eye (Photo credit: Vinally2010)

I needed her to help me get up. It took several times.

I lost part of myself that day and every day since. I know now that it IS a progressive disease, I feel it. I know with time I have gotten worse; my dream will never come true.

Beautiful, Tranquil Water

Beautiful, Tranquil Water (Photo credit: BrotherMagneto)

If I ever get to live close to the water it will have to be a lake but that’s not nearly the same as the ocean, not even close. Dreams die, health fades, burdens multiply. We cannot do anything else but accept. Accepting graciously is one option. I’m not there yet.

So, Thanks Fibromyalgia, you not only messed with my body this time, you messed with my dreams and emotions too. Way to go.

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My Fibro Fantasy, Rated X

I admit it, I fantasize, doesn’t everybody? There’s a possibility that tomorrow morning my fantasy could come true but most likely not. I’ve been here before. Several times and it hasn’t worked yet. It probably won’t ever work, it will never change, not in my life time.

FIBROMYALGIA

FIBROMYALGIA (Photo credit: *SHESHELL*)

I have an appointment with a new Rheumatologist that practices close to where I live. The doctor I am using is a wonderful doctor and a compassionate man, I have no complaints except he practices in the big city and it is a pain (literally and figuratively) in the ass to take public transportation to see him.

I can’t do it anymore, alone. I don’t have the stamina and energy  that I used to have. When did that go?  I used to drive my car to the train, walk up the flight of stairs to buy a ticket, down another flight of stairs to get to the train. After the ride I had to climb another flight of stairs and usually walk or take a taxi to the doctor’s office. It was a very long walk but I could do it. I could do that years ago but no longer. What changed?

English: The location of the nine paired tende...

English: The location of the nine paired tender points that comprise the 1990 American College of Rheumatology criteria for fibromyalgia. (Photo credit: Wikipedia)

I don’t know where or when my energy dissipated, perhaps it atrophied but I don’t have even 10 percent of it anymore.

Why the fantasy?

Because in the back of my teeny, tiny brain, somewhere in the bottom, left-handed corner, deep in the middle of the 36th quadrant, 76 degrees counter-clockwise there is a dot of hope that THIS doctor will help me. That SHE will jump up from behind her leather chair and wooden desk and exclaim “Oh NO!! You have been misdiagnosed. You do NOT have Fibromyalgia, you have a rare disease called Tortellini Soupadejour, highly treatable, all you need to do is take one small pill every morning, no side effects.You will be cured in 3-5 days, Congratulations!

At that point I would burst into tears, hug her and my husband and feel faint with relief.

That’s the fantasy part.

I want that so badly that I can taste it. I want my old life back. Before Fibromyalgia. Not this crappy piece of shit. Yes, I appreciate it’s not life-threatening, truly, but to hurt every day and night, to have NO energy is no fun either. I’ve also gotten to the point where I don’t care what other people think; I know what’s true and my Fibro Facebook Friends know.That’s all I care about now.

All I want to do tonight is cry. No, don’t feel bad for me, that just makes it worse. Besides, if I told you how I really felt, I would be holding you up for an hour. You know that, just acknowledge it and move on. I hate pity parties and if I want pity, believe me, I will give myself the pity party I deserve. I don’t want pity from anyone else, but thanks.

I want to scream at the world, I want to lash out at nice people who ask me, with hope, how I am feeling? I’ve decided on just saying “fine.” If I was honest it would take an hour and people would get bored and probably wouldn’t believe me anyway. My true friends can see it on my face or hear it in my voice, over the phone even.

All they need to see is a glimpse of me, a catch in my voice, generally my friends are like me, sensitive, compassionate, at least most of them.

Unicorn

Unicorn (Photo credit: scorpiorules58)

I am NOT expecting any miracle tomorrow, I know everything will be the same. She is just easier to get to, I don’t need my husband to drive me, I can get there on my own. The bloody diagnosis will be the same, I may burst into tears but not because I have a new diagnosis but because I had a speck of hope which was the stupidest thing to have, ever and the worst part? I knew that all along.

 

 

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Haiku Heights – Fortitude

FREE MYANMAR 2012 - I give you my smile - Ich ...

FREE MYANMAR 2012 – I give you my smile – Ich zaubere Dir ein Lächeln (Photo credit: alles-schlumpf)

How I feel, appear

strong, confident, sparkling-gold

Inside I crouch, wilt.

***

A lonely corner

a pink crumpled little girl

Will not show her tears.

***

Inside, she is steel

Stubborn, rigid, eyes black- gold

Blonde, sweet, smiling curls.

The Fibromyalgia Sorority- Update

Ping Pong game by Parker Brothers, The Childre...

Ping Pong game by Parker Brothers, The Children’s Museum of Indianapolis. (Photo credit: Wikipedia)

August 5, 2012

I promised an update and I keep my promises but it’s nothing “earth shattering” as my Mom is fond of saying. It’s just the same old, same old. I did go back to the neurologist for results but everything was fine. To me, that was good. He figured out that the tingling and imbalance could have been caused by the drug Topomax, but why I fell flat on my face for no reason he couldn’t answer. To him, he looked vaguely disappointed a) because he couldn’t help me and b) I was no longer of interest to him. He made that VERY obvious. The difference between the first and second appointments were like night and day. I stopped Topomax which now leaves me to go back to the Rheumatologist but I am not in any hurry. He was the one who prescribed Topomax. (Did he not know better?) From one doctor to another, I feel like a ping-pong ball.

Today, it is beastly hot and humid and I can barely get from the house to the car, this weather is not ideal for those of us with chronic pain, imbalance, weakness. There’s only a couple of days during a few weeks when we have ideal weather but that does not guarantee feeling well.  The winter is really rough, icy winds and snow but the summer’s humidity feels like I’m suffocating.

I went with my daughter to one store for shopping for college and there was no way I was going to miss it but I sure wish there were more chairs and benches to sit on for those of us who need a break. I’ve found holding on to a carriage is helpful and sometimes, if I really feel bad while I am there I can use the electric carts. I didn’t want to do that with my daughter but that’s a blog post of a different kind…..I’m sure those of you with teenage daughters understand.

How can we look forward to any day when we don’t know how we will feel? I used to set things up in advance, make plans with friends, go into the city, or to a movie or a museum. Now, it’s like the earth has to be aligned in 940 ways before I even think about it. Not too hot, not too cold, not humid, not torrential downpours and then we have the symptom assessment. What hurts, what doesn’t (rarely an answer there) have I slept well? Everything is so complicated now. I envy my old life, pre-Fibro, but I have accepted it is gone. I wish one or two of my family members would accept that too.

People still say stupid things and most people, unless they have Fibromyalgia, JUST DON’T GET IT.  Those of us who have it are unlucky members of a very big club. We understand EACH OTHER.  Fibro sufferers, if nothing else, be glad we have each other. Perhaps we could all become sisters (and some brothers) in a Fibromyalgia Sorority. Fi Kappa Fibro anyone?

My Dad, The Little Yellow Butterfly

Clouded Yellow butterfly (Calias crocea)

it was an absolutely brilliant day, the thirteenth day of November

the sun was shining high in the sky,

covering my shoulders and arms with warmth that felt like a cashmere shawl next to newly showered skin.

I miss you dad, especially on your birthday

sometimes I forget that you died ten years ago

and I don’t know how I can go on without you

but then you show yourself to me, when I need it most.

‘see me there on the tree branch’  you whisper like a passing cloud, a subtle breeze

i am this small yellow butterfly: i can finally fly, i am happy in my spirit, and no longer in my poor, old, aching body

that made me feel so sad and powerless.

believe me honey, i would not lie

my spirit never left you and it never will for I will always love you.

see? i’m down here now, i didn’t leave you,

you just turned away.

Being A Mom With A Chronic Illness (ChronicBabe carnival)

Mother and Baby

Image by Praziquantel via Flickr

My goal in life, since I was five years old, was to become a mom.  I thought getting pregnant would be natural and beautiful but it seemed we needed a little help. After two and a half years of painful shots, medication and an every day visit to the infertility clinic  for blood work and ultra-sounds I finally was pregnant. I collapsed to my knees behind the closed-door in my stuffy office and kissed the dirty gray carpet in gratitude. I cried with happiness, one hand already covering my tiny belly.

My son was born and we called him Buddha baby, he never cried, he was always happy, a smiling, compassionate and outgoing kid.  He was my miracle baby, my first born. I went to every baseball game for my son, sitting in the bleachers in the rain, and sneaking away to the car to warm myself up.

My daughter came, naturally, twenty-one months after her brother was born, screaming on top of her lungs as she entered the world. I remember going into her room and lifting this red-faced baby girl to my shoulders, she would take a deep breath and her whole body relaxed into my neck.  I was her only source of comfort when she was a baby. I was there for every ballet lesson and dance recital, holding a bouquet of daisies, her favorite flower, in my arms like I was nestling a newborn baby‘s head.

I did everything for my kids and I loved doing it. This was the career I decided on and I wanted nothing more. I stayed home with them even when they got older because I knew they needed me during the tough middle school years. They would never admit it but they were happy to see me when they got home. Working moms called me “old-fashioned” but I didn’t care.

When I was 50, I went through menopause and my body fell apart. I was diagnosed first with Hashimoto’s Thyroiditis, an auto- immune disease. When Synthroid, did not help me at all, I warily shuffled from one doctor to another, every bone and muscle and joint in my body screaming with agony.  My internist had given up on me, she stormed out of the room while I was laying there on the exam table crying in pain.  After visits to many different doctors I was finally diagnosed with Fibromyalgia. I felt like I had the flu, every single day and night, with no fever, my personal definition of Fibromyalgia.

My life changed after that. I became the mom “before” I was sick and the mom “after.” I felt that I was no longer the mom you could always count on. I prefaced everything by saying “If I feel okay that day,” and “I’ll call you the morning of…”  Luckily my children were fourteen and twelve but it was now Dad who got up, made breakfast and lunches and dinner. Me? I was asleep, always asleep and in pain.

I felt lost and sad for years, not being able, physically, to be the mom I once was. Now, I am dropped off at an entrance to anywhere we go  like the handicapped patient I am. I sit alone, on a chair, when all the other parents and children go on a campus tour to see the entire campus. I cannot walk that far. I don’t want to be an embarrassment to my children or a burden for my husband.  I want the kids to remember the mom I was before I was sick but I know they don’t. They probably just remember me as I am today. I am not the mom I was before my illness even though my heart remains unchanged. I am the mom that they have now and because of that I have tremendous guilt and a lot of residual, emotional pain.

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.