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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Cranky Is As Cranky Does…I’m HUNGRY

Chicken soup is a common classic comfort food ...

Chicken soup is a common classic comfort food that might be found across cultures. (Photo credit: Wikipedia)

HELP WANTED: LOOKING FOR A SCONE ASAP OR EASY RECIPE

Yes, it’s true. I AM CRANKY and I don’t even need to explain it. I know. That’s enough. I don’t want pity and I can’t change the situations. My physical health, sigh, I have to accept. I’ll live. However, when my life’s joy, (vice,) hobby and life’s work is limited then it gets darned serious. No, I am not on a diet. That would be easy. I wish I was on a diet because there would be a reason and an outcome and a desired result.

But, with my bad luck, I have to be the one whose jaw blows out whose sound carried through the house leaving me shrieking in unbearable pain and crying that my husband came running. I knew I should have gone to the ER.

I saw my dentist, an oral surgeon and now I’m supposed to see a TMJ specialist. I’m not surprised, it was just another thing to heap on but for me, this was a personal tragedy. Not being able to EAT?  I don’t like drinking or smoking or anything else, I have no hobbies but one thing I love is food and now that has been taken away from me. I’m yearning for real food that is not mashed, white, banana-like or blended.

A fresh batch of homemade buttermilk scones.

A fresh batch of homemade buttermilk scones. (Photo credit: Wikipedia)

And even if I tried to like drinking I have recently been informed that my kidneys are in bad shape too. Surprise!

I’m sick of chicken soup, vanilla milkshakes, rice and bananas. I long for warm, crunchy French bread dripping with butter, a large sandwich, basically anything I am now denied. I still want scones, pizza and a great big salad and did I mention scones?

I can’t bear to call another doctor tonight. I’m in no mood. It’s almost time for dinner, home-made chicken soup with mashed up Saltines in them, I learned that from my kids. Luckily, we have cupcakes from yesterday, they better taste good. I need something before I start to scream.

The oral surgeon also said that this pain will come back that some internal bleeding happened when the disk in my jaw slipped. He’s a nice guy, a really nice guy, he didn’t even charge for the five-minute consult but I wish he hadn’t said what he did.

I’m hungry, I want to eat real food, Last night I rebelled and tried (the operative word) to eat teeny, tiny bites of pizza with fork and knife (a la Diblasio ) which really was no fun at all and of course the pizza WAS BURNED.

Out of pure desperation I ate my husband’s filet of sole drenched in egg and butter:  I don’t even like fish but it was something different.

BUT, I want scones, surely I could eat those, sweet scones made with love and wild blueberries, I see them dancing beneath my eyes.

I wish I could bake with ease. With all my illnesses I just may have to acquire a new skill: baking. No more liquid diet. ‘Eat as if you were a three-year old” the charming doctor said. I will listen to him, cutting everything up into tiny pieces, everything for a taste of variety.

I’m stuck on muffins and stones. Any kind. Soon. Help me. Please?

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National Invisible Illness Week: September 9 – 15th

Fibromyalgia Eye

Fibromyalgia Eye (Photo credit: Vinally2010)

Who am I?  Can you see me ? Over here. The woman with the curly brown hair, green eyes, the one sitting down on the bench inside Target or the supermarket. No, I’m not lazy, I’m tired. Did I sleep well? No, but I don’t usually sleep well even though I have medication for that. Do I feel rested when I wake up, eager to take on the world. Well, no but I am older. How old? I’ll be 57 in two weeks. Well, it might not sound old to you, to me it’s ancient.

I have a childhood friend who claims she has Fibromyalglia  but refuses to see a rheumatologist. What? Yes, she sees a general doctor, one who knows about endocrinology for her thyroid.Do YOU see the point? Right, me either.  I have tried so hard to help her feel better but I’ve stopped, she obviously doesn’t want to feel better, she wants to complain.I grew up with her, no other bond, my mother remembers she’s been complaining since she was five, I remember it too.

I had to go to neurologist after I suddenly fell, on my back and test after test came out perfectly normal except for one: I had no balance. He had me walk a straight line in his office as if he was a police officer and I was a drunken driver. I zig -zagged on that line as if I had an overdose of margaritas and tequila sunrises and amaretto sours, mixed together in a huge bathtub big enough to fill a college party.

“Hmm” he said, “you have no balance” I nodded my head, up and down, ‘yes, I said, I know’ but he shrugged his shoulders and sent me away and said “I was fine.” If I was fine, why didn’t I have any balance? “Oh, it’s probably your Fibromyalgia…”he said. I’ve found now that when doctors don’t know what you have and they know you have Fibromyalgia that’s the answer they give. Nobody wants to take the time to figure it out, they don’t care, half of them don’t believe in the diagnosis anyway; since we don’t have many answers let’s all lump the various symptoms together toss them into a bag and label them Fibromyalgia. That’s easy.

What’s not easy is not having a cure and there really no potential in site. I happen to have a wonderful rheumatologist in the city and he is not only incredibly knowledgeable, he also really cares and that is an amazing combination and very hard to find. I don’t have as much pain as others but I have no energy. I can do one or two errands depending on the day and I never know in advance. It’s hard to make plans. Close friends understand, others don’t, want to know who your true friends are? Oh, it’s not hard at all.

I have a handicapped parking sticker for my county, you should see the dirty looks I get sometimes when I try to get out of the car. People judge on no information, they don’t ask, they immediately judge. They don’t notice the pain in my eyes from sitting in my car trying to stand up? No. So they notice the pain in the back of my eyes so I don’t cry out?  I don’t look “sick” is that it? That’s what I thought.Do not judge me or my handicapped sticker, I don’t judge you.

There it is, I don’t look sick therefore I must not be sick? Wrong. If my legs were in casts or my arms and shoulders too perhaps you would understand, but just because my pain is in the inside doesn’t mean I’m not sick. Sometimes, I wish I could show you my pain, physically. because emotionally, you’ve already done your very best to make me feel like worse than I already do. Maybe you could stick my whole body in plaster, maybe then you would understand.

UPDATE: Hashimoto’s Thyroiditis and Fibromyalgia, 2011

Various pills

Image via Wikipedia

I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses  for over four years, with three different doctors and probably over 15 drugs in some combination or other.

I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.

Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.

Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the  brown overstuffed pillow.  The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.

I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number.  I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.

It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.

I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia  know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty,  and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.