Fibro Life, Friday


Please, just let me sleep, don't find me...

I am too tired to keep my head up, I tried to make good on advice to get out more. As Fibro patients know, I’m paying the price. Minus two spoons. I owe two spoons from tomorrow, not that it really works that way, right fellow spoonies? We really can’t win either way.

I generally never complain about Fibromyalgia, Savella and Tramadol usually do the trick but then again, I haven’t pushed myself this hard in a long time. I really have to ask myself if it is worth it? When I am racing around town, doing errands, getting my hair cut, drinking a strong cup of coffee, going non-stop I am NOT able to handle it because apparently now, I am a wreck, a demolished car on the side of the road, Not one part left, it’s sitting up an embankment totally crushed.

I have given the same advice to my friends “don’t do too much” but I didn’t listen to myself today because I was on a new mission to “live, to explore, to get out of the house.” Yep, I overdid it.

I might be so tired that I can’t even eat dinner. Nah. Who is kidding whom? I’m sure I will perk up after food, I smell chicken breasts on the grill, the salad is on the table already, I’m chopping tomatoes for bruschetta. But, really, all I want to do is to curl up in a ball and somehow loosen the muscles in the back of my neck and fall asleep. I don’t see that happening nor do I see myself cleaning my room and organizing it.

Let me stay here, in the midst of my bed, covered with clothes and freshly washed laundry, next to my calendar and my phone and a pink and blue pen. I will push things aside in a corner, I won’t complain, not a sound will come out of my exhausted mouth except the sweet snoring sounds of an overtired, head-throbbing, weak patient.
Don’t tell anyone I am here, I am so broken I don’t want to be found. I just want to sleep. Shhh, please just let me.
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Thursday, In The Emergency Room…

I’m fine now. Okay, maybe not one hundred percent fine but so much better than I was on Thursday. I just FEEL like I’m alright in comparison with…you get the idea.

The left side of my head was wracked with searing pain, I could only describe it (and again this makes NO sense)  as oozing green jello on crack cocaine wearing a choker collar, fastened way too tight. The black collar was sharp, with metal triangular studs bursting through it about to swallow my skin. I have never had a headache, a one-sided headache, that bad, deep and unrelenting before in my life. And yes, in my imagination, there was blood, messy, crimson, creepy blood dripping from all my veins into my wide open mouth.

It was the headache that went on and off for weeks but got progressively worse.  Anyone living with Fibromyalgia is no wimp, let me start by telling you that. I’ve known all kinds of chronic pain but this was new. “Join the club” did not seem like an appropriate greeting. This stabbing, shooting misery aimed directly at the left temple and whole left side of my face were like launched missiles hitting their target every single time.

I've had a migraine/headache for 6 days straig...

I was also nauseous and my left arm tingled. I was my in my war zone. Finally, after a few hours of this non-stop torture, I agreed, I even urged, to go to the Emergency Room where luckily there were no lines of people waiting ahead of me. I was so grateful that there was only one family before me that I could have started sobbing at the registration desk.

I was already dizzy, so that when the security guard on duty started asking me questions,  I just had to pry my aching head, from my folded arms on the counter, and squint to answer what my name was, my address etc. that was all I could handle.

“Have a seat” never sounded so good to me before. My husband rushed in after parking the car and with his arm around me, my head nestled into his neck, I tried desperately to hold on to my sanity with all the pain.

When they finally called my name they led me to a room which happened to house another patient with the same symptoms, it was so odd. The nurse, the lovely and sweet nurse, was amazed at both patients’ similarities and if we could have laughed, we would have but at that time we still hadn’t received  pain relief and we had no sense of humor.

Grey's Anatomy (season 1)

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

After what seemed like hours, the ER doctor breezed in and while questioning a few things on my chart (not confidence inspiring At ALL)” What’s a stapedectomy mean? What does the drug Savella do?” 1) ear operation 2) a drug for Fibromyalgia.

Finally, FINALLY they gave me shot of some heavenly drug with a dose of benadryl and a huge bag of saline solution. They took me for a CAT scan and insulted my brain and my age which were not the same (never mind)  as they should be and left me to doze.

The medicine wore off quickly and while all I wanted was to get out of the hospital, away from potential staph infections (I watch way too much Grey’s Anatomy) my neighbor chose another shot (not that I blamed her) and slept it off. At one point I actually wore small blue hospital gloves that embarrassed my husband, shocked the ER doctor and amused me immensely.  I left to just get out of the hospital germ zone and they gave me a Percocet to swallow on the way out. All of this is true.

We left at 1:30 am and I stumbled to bed. The next day I had three, yes, three doctor appointments: First with the Rheumatologist that my husband was hell-bent on me keeping (I regretted that. 2) My Internist (follow up from the ER and 3) New (bad-ass) Neurologist because I had no choice and I lucked out with a great doctor!!

She was an impressive, straight forward, to the point and very, very nice and I begged to be her patient to which she smiled and said she didn’t care who I made my post office appointment with and half winked….We love her. (A big thank you to my friend Phyllis.)

So, now I wait, until eleven pm, a more decent time to go to bed than 8pm. I’ve been waiting for this time, this pain pill, and my pillows all day and night. I think of it this way, nothing could be worse than the headache of yore. It won’t happen again, I hope.

*All typos and grammatical errors are due to prescription drugs that I am NOT abusing.

This New Waking Up At 5: 30AM Is Seriously Getting On My Nerves

If (when) I get cranky during this post you can blame it on the lack of deep, constant, uninterrupted sleep. I’m cranky just thinking about it. This has been the fourth or fifth night in a row and correlates beautifully to the new medicine to raise my blood pressure.

True, I am not passing out and smacking my head getting bumps the size of baseballs but still, as any chronic pain or Fibromyalgia patient knows, sleep is our vacation. I wish I would be kidding but I’m not.

Insomnia

Insomnia (Photo credit: Alejandro (Lì Delfos))

Literally, going on vacation stresses our bodies more than staying in bed, not that it isn’t worth the risk at all. So, this old body now awakens way too early in the morning and today it’s not even a sunny morning but a gloomy gray one. Of course, I try to go back to sleep but it never works. Also, I can’t nap anymore.

Fibro: The Way It Is, make something better, make something worse. A trade-off. Ugh, I’m disgusted but with Fibro or any Chronic Pain Disease when aren’t we totally fed up? Usually I can handle it very well and I am NOT a complainer but now I am definitely cranky. If I can’t run around and have some semblance of a normal life at least let me enjoy my sleep and sweet dreams.

I guess that’s too much to ask, isn’t it? I’m giving this drug a few more days and then I will begrudgingly call the doctor as promised. I know he is just going to give me one pill after another to try but I wanted fewer pills not more. Granted, passing out at any time definitely had its disadvantages and the fact that no one call feel my pulse was a little scary but there must be something in-between?

Before you tell me about any type of herbs or supplements I am NOT allowed to take any, because of the chronic kidney problem. It’s time to do some deep breathing, now that I’ve written my frustration out here, hopefully I’ll feel better soon.

If not, there is always leftover pizza with grape jelly.

IF I had some.

Nestle Toll House Chocolate Chip Cookies

Nestle Toll House Chocolate Chip Cookies (Photo credit: fritish)

Since I LOVE FOOD and SWEETS maybe it’s time to make Nestle’s Tollhouse chocolate chip cookies. Just one, maybe two before bed with a very large glass of milk. Milk is medicinal, it helps you fall asleep.

That is, of course, why I will bake cookies today, all in the name of science.

Cookies? Check. Ice Cream? Check. Impulse Items? Check.

WELCOME HOME

 

I haven’t had the energy to go grocery shopping (something I hold near and dear to my heart) since early Spring. I’ve had all my illnesses flare up at the same time: Fibromyalgia, Hashimoto’s Thyroiditis, Syncopy, Fainting and Crashing, No Energy etc. For me? A tragic loss. For the supermarket? A major deficit. I’m not joking (as most of my readers will tell you) I LOVE FOOD, good food, strange food, NEW food and products. I will always look at every item on the shelves to see if I can spot any new items. I always can and I always buy them. I have no idea what the photo below is showing but that is a product I would definitely buy and eat, wouldn’t you?

Fastelavnsboller

Fastelavnsboller (Photo credit: Wikipedia)

 

 

 

 

 

 

My husband came along for this trip just to see if I could physically make it but once we were in the store I shot out with my carriage grinning wickedly. I don’t need a list nor do I want one. This is my home. I look at every item in every aisle and I know what I need, want or have to have for that week.

I knew it was a mistake NOT to go into marketing after I graduated college. I am the one to pick out the next new product, the new sensation, the new flavor, I’m a marketer’s taste test dream. Is it too late? I am at my prime, have your people twitter my people.

My mom says I have been like this since I’ve been five years old. I haven’t outgrown it and am proud to say my children, have inherited this hobby too. Even now, in their twenties, they love to go shopping with their mom.

For a while when I was younger (no, I’m not kidding) my then boyfriend, now husband, watched a show called Supermarket Sweep. We watched the original show every single night when it first came on. We toyed with the idea of getting married in a supermarket but somehow never went through with it; I regret that.

Stew Leonard’s is a great place to shop and fun too. I bet they would help if we could talk my (un) romantic husband into the idea. Right near the mooing cow! Don’t get me too excited, please.

Stew Leonard's

Stew Leonard’s (Photo credit: JeepersMedia)

Anyway, I bought: (New Product) lemon ice cream with mashed lemon cookies inside,huge, soft oatmeal raisin cookies (new brand) some new kind of skinny-ish popcorn for when you need something slightly salty but not fatty while you are watching a movie at home.

 

Also, I am now taking a new medication for my fainting spells, the fancy name is Syncopy also: Fibromyalgia, Hashimoto’s Thyroiditis, Narrow Angled Glaucoma, Eppiglottitis, IBS,  and others. I now have to have breakfast. I bought apple, blueberry and strawberry breakfast bars. This is the first time in all my life that I have eaten breakfast, my mom will be so pleased.

Usually, it’s just that steaming cup of coffee in my white Starbucks mug with half and half and one sweetener. I look forward to the smell and the first sip every single morning.

After that, I just go on with the boring details of my day. If I don’t feel the need to nap, I feel it is a personal triumph. Then our dinner conversation begins around 4pm. What shall we cook?  It doesn’t really matter, last night we had hot dogs, baked beans, and broccoli, the night before pizza but they are all precursors to the most important part of any meal: dessert. The lemon ice cream dessert:

Lemon

I dipped my spoon, my little spoon, into that new lemon ice cream, slowly, tasted a small bite, let it linger on my tongue and swallowed slowly, making sure I had a cookie bite with the ice cream. I was hoping for a dance sensation in my mouth or as my husband and I used to say “I hope it dances.” Did it? Oh yes. After half a cup of delicious lemon ice cream with bits of lemon cookies, I have found a new love. It’s so nice to be in love again, I feel tingly all over.

 

Is Begging From Strangers On The Internet Now “In?”

The first time I saw an ad over the internet for a couple asking for money from complete strangers, all over the world, I thought it was a joke. I literally thought it was a spoof but it wasn’t April Fool’s Day so I didn’t understand it. Until I saw another ad asking people for money to pay their expenses to cover their credit card minimum. I’ve seen actual ads for couples asking people to donate for their fertility treatments, for their sick dogs and cats and yes, one for an ailing bird.

Money

My husband was laid off from his job10 months ago. He started looking Day 1 and hasn’t stopped. I am not able to work full-time due to physical limitations (numerous health conditions including Fibromyalgia, Kidney Disease, auto-immune disease, Hashimoto Thyroiditis, Syncope and Hypotension ) but even I am looking for part-time. We are not eligible for unemployment money. It never crossed my mind to put an ad on Facebook or anywhere on the internet to beg for money. Call me old-fashioned. When did this become a socially accepted use of media? Or, a personal standard?

I’m not judging (okay, I’m TRYING not to judge) but this is all so new for old-fashioned me. Is this the younger generation’s idea of problem solving? I sincerely hope not. So, believe me this blog post is NOT about asking for money. I would not do that. But, I am asking for a favor and while I don’t have high hopes I consider this networking because my husband gave me permission to put his résumé on my blog.

He does not want a hand out. We would not accept money to pay our bills. We would rather move (which we are talking about) anywhere he can find a job. Do I want to move? Not really. I have an elderly mother here and my sister, both twenty miles away from me, I’m in the middle. Our children go to SUNY schools.

Half Empty Or Half Full?

Half Empty Or Half Full? (Photo credit: MarkyBon)

I am not asking for pity but a connection would be lovely. The following link is my husband’s resume, please read it and pass it along if you know anybody. Anybody who is somebody is even better!

http://www.proj-mgt.com/dfriedmann.pdf

If you can find it in your heart to take a minute to read his résumé, we would greatly appreciate it. I’m not too proud to network for my family, that’s what families do, we stick together. We are trying to stay positive, truly. Today was rough, maybe tomorrow will be better.

Thank you for reading my blog and for any help you can give us.

 

 

 

 

 

 

 

It’s Not Just Peanut Butter And Jelly Anymore (Food Cop)

I’m hungry, borderline starving. I know that’s a fairly regular experience for me but tonight I am ravenous AND I have to be careful ABOUT the texture of what I eat.

     

    a peanut butter and jelly sandwich, top slice ...I’m having a flare-up of everything that could possibly hurt, especially now with my jaw, teeth, head and neck.

    Having a vicious battle with TMJ  AND a cavity that needs to be filled, I thought I would be cautious and eat soft food. Since I was not feeling well, all day, light-headed, dizzy (reason still to be determined with the dreaded TILT test) my husband was kind enough to bring me a peanut butter and jelly (extra orange marmalade on the side to be mixed in) sandwich. For a side dish there was a tiny amount of mashed potatoes, leftovers from last night yummy restaurant. Oh yes, there was sour cream and butter in those “mashlers” as my dad used to say and as part of my family still says.

    The amount of peanut butter and jelly is crucial to any perfect sandwich, bearing in mind everybody’s personal preference. For me, more jelly and less peanut butter is the way to go. My husband and our friend John in the neighborhood, put staggering amounts of peanut butter on their sandwiches (“There IS NO such thing as too much peanut butter in our house”) John said. My husband, agrees. He slathers on peanut butter and measures it in inches. I disagree. I’m a more jelly than peanut butter kind of girl.

    I was having a bite of mashed potatoes, on the side, following a bite of my sandwich (the color of the jelly and the taste is carefully matched too) when I noticed a wonderful, soothing, comfort spreading taste in my mouth and stomach. After two or three bites of the sandwich and then the mashed potatoes I was sure that a combination sandwich would definitely ease my pain.

    Wait for it, my friend, Maureen, because you KNOW it’s coming….

    Hence, the peanut butter and jelly and mashed potato sandwich was born. Don’t prejudge, it is the ultimate in comfort food. The peanut butter and jelly or jam is cold or at room temperature and the hot mashed potatoes, sans gravy, are warm, buttery and rich.

    It was love at first bite. I finished every creamy morsel and would have eaten more if I had more to eat. I have had in the past peanut butter and jelly with cheddar cheese and once I had a peanut butter and jelly combined with tuna fish sandwich but those are a little too much and way less comforting than my new, favorite combination.

    Mashed Potatoes!!!

    Mashed Potatoes!!! (Photo credit: Manuel Alarcón)

    It’s a win-win situation. How could it not be fabulous? The greatest in comfort food.

    Sure, I make a mean chicken soup, or lentil soup, those are all   eaten mostly in the Winter. But this new combination?  Adding mashed potatoes as an ingredient? A genius idea of comfort in a bite. In every single bite.

     

    The Tilt Test Has Been Scheduled

    English: Kirnu, a steel roller coaster in Linn...

     

    I’m not ashamed, ever, to say how I feel. Obviously you all know that by now. I’m honest, sometimes too honest but writing gets my feelings out, the good, the bad and the ugly. The anxiety, the fear, the fibromyalgia symptoms and most lovingly, the food.

     

    Because I had another collapse/fainting/black out episode/severely bruised my leg and had a huge bump on my head… I now have to have a series of tests. I keep telling all these stupid doctors that I am sure it is due to my low blood pressure. 85/60 wouldn’t you consider that as a cause?

    I have salted my food, adding pretzels and potato chips and nothing seems to help. Doctors bug everyone about high blood pressure but as my internist always said, “Yeah, I have low blood pressure too, just sit up slowly and salt your food.” After twelve years do you think that’s been working? Apparently not. You were only interested in this now because I told you my rheumatologist had suggested an idea and would run it by my nephrologist. All of a sudden you wanted to get involved? Like you forgot I asked about this for the last twelve years??!!

    Nothing like a little medical competition.

    But still, they have to rule out everything else first. Gotta love the medical industry, schedule those tests, pay the bills, I’ll see you for seven minutes, kick you out at eight. Insurance number? Same address? Medications? The same, doesn’t matter, fill it out again, we know you were here yesterday. Rules are rules.

    English: Blood pressure measurement.

    As one of my favorite doctors, my nephrologist, put it you must have: “The Vomit Test.” Thanks Doc, not the right time to be friendly and casual even though I’m sure your intentions were honorable. I can’t even say the name of the test without feeling like I am going to throw-up. I am dreading this, although I admit, the nurse who is monitoring the test has probably seen it all. Actually, not really, I am dreading it more than anyone or anything.

    I HATE the feeling of being nauseous, dizzy, off-balance, I have always called this test “The Dreaded Tilt Test” and so here we are. My cardiologist talked me into it and since his father (coincidentally) was my pediatrician growing up and because I like this dude I said I would do it. But NOT HAPPILY. (I can still cancel and I am considering this.)

    I’m the nerd who has to take Dramamine for a long car ride or any ride in a boat. Those big cruise ship lines where they say you don’t feel a thing? Been there, done that and definitely needed a drug for anti-nausea. I HATE ROLLER COASTERS. Went on a baby roller coaster once and screamed my head off, never to be seen on a roller coaster again.

    If I’m feeling nauseous just thinking about the test I can only imagine what the test itself is like when they swing me around from start to finish, in rapid movements, in different positions. They said it only lasts about thirty minutes. For me, this is thirty minutes in absolute hell. If I see this contraption and it is anything like the Disney tilt chairs or like a small roller coaster, I am out of there. Cancelling has never looked better. Help!

    “The vomit test?” Really?

     

    Smelling Change, Part 2 (2 weeks ago)

    Illustration of the Devil in the Codex Gigas, ...

    Illustration of the Devil in the Codex Gigas, folio 270 recto (Photo credit: Wikipedia)

    A follow-up to “Smelling Change” where I was highly optimistic….

    It was a long week or two that followed that one amazing day of innocence.

     

    WHAT THE HELL WAS I  THINKING?

     

    At least I thought things were going to change for the better.

    I know, nice try. The thought of happiness and joy, like being enveloped in a soft pink cotton shawl didn’t work at all. Maybe it was a lot of bull—-. Maybe I was just in a really good, positive, affirming mood that day. I’ve tried so hard, you know I have, but I went from gratitude and perseverance to sadness, depression and disgust. Now, I’m plain fed up.

    The fantasy of hope was delicious for a few days, like savoring a spoonful of a rich, vanilla bean ice cream twirling on your tongue, letting it melt and slowly swallowing. A tantalizing, sensual process. I lick my lips with the tip of my tongue.

     

    Now?

    I have lost all feelings. I’m in an empty, lonely place and that scares me more than any situational depression. I am a woman with great emotions, always, good or bad, high or low and now I feel like I am pressed in a corner, invisible, except for the dust bunnies that surround me. My husband will most likely vacuüm around me but not see. He prides himself on his vacuuming skills.

    Worst of all, now I feel nothing. If you can feel numbness, that’s what I feel. Things haven’t been going well at all. I feel alone, not the “we’re in this together” support that usually holds us closer together. We may watch television together but he holds his cell phone in his hand playing games and not my hand.

    Droid Apps Cell Phone

    Droid Apps Cell Phone (Photo credit: GoodNCrazy)

    This is the person who was my support system, my best friend in the world. Whoever is living in the same house now, I do not know. He’s a stranger to me. Yes, I am here, imperfect, with all my flaws and disabilities but I have raised our children and have done a great job of doing that. I need more in my life than emptiness, and sitting on my bed to eat alone. I have my dog who keeps me company, I enjoy that.

    I feel sad when I write this, is that a good sign? I know all couples go through good and bad times. It’s not the very first time this has happened in 25 years but of course, it feels that way.

    When my husband brought up my disability, Fibromyalgia, in a threatening/demeaning way, “when I get a job, things will be different because you are sick” what the HELL did he mean by that? AM I NOW supposed to apologize for my pain? Get down on my hands and knees, scrub the floors but not be able to get up?

    That was insulting to me and to my Fibromyalgia sisters and brothers, something I will not accept.

    EVER

     

    underwater fibro fog (unfinished)-altered jour...

    underwater fibro fogSigh,

    We both need to work harder to communicate more clearly. Over and over again. Riding the waves, up and down, in and out; there are never new problems, just old problems recycled again and again.

    The work is endless, the peaks and valleys are like that of an EKG. Everyone has problems, we go up, we go down like waves on the beach, we’ve been down together for a long time. Are we ever going to be able to get up? To rejoice? We, have lost all hope in the world, not in us, but in the world.

    We are both under a lot of stress and have been for many months, we both realize that. But, we are on the same team and need to rally, once again to support each other. To keep each others hopes and dreams alive.

    *”salt ur food?”

    my rifght haand is clutching tht ice pack over the big bump on the lefftt hand side off my head,,  my heaed has beien pouwnding 4r days and it hasnt sto[[pped. this my not look prrtty but it sure as hlkl is genuine, though by now, if u r reading my blog this wont come as a big surprise.

    My World

    My World (Photo credit: GollyGforce – Living My Worst Nightmare)

    this is thre fourth time i have blacked out for no s apparent reason; sondssy b sunday night was the worst, i ended up craShing intoa wall my(forget the ice pack) left thigh thrown into the table landing me on the floor with a chair over my head.

    (I know I’m supposed to be icing but 2 minutes won’t kill me and if my husband comes in you will know I’m icing again.) I have no idea what caused me to go down in the first place, no idea, none. This is the fourth time this has happened and my dear internist, known as The Ice Queen, has always poo-poohed this and said just add more salt to your food. She has said, for the last twelve years, that she also has low blood pressure, and that she feels dizzy and light headed too when she stands up from a seated position. That’s all the advice she ever gave me. I swear.

    Oviously that’s NOT working. I know I have low blood pressure, extremely low blood pressure and all my doctors know about it but my new Rheumatologist was the first one ever to suggest calling my Nephrologist (kidneys, weak and small, stage 3) to see if I could be given a drug that would be safe for my kidneys and bring up my blood pressure.

    Aneroid sphygmomanometer with stethoscope, use...

    I called both doctors early this morning. Both of them, repeat both of them were out. I know it’s just a bad coincidence but the Rheumatologist will be out all week and the Nephrologist might be back on Wednesday. The Ice Princess has to step it up, she is literally only good when there is a mystery to be solved so here is her chance.

    She scheduled me for a head CAT scan immediately, blood work and an EKG, referred me to a Cardiologist that I know and am going to see this week and the rest will just have to wait until the other doctors come back.

    Usually, I would worry myself to death and hope for nothing wrongbut not now. I want there to be something fixable, to figure out what is happening and find a cure. It’s enough that I have Fibromyalgia, a chronic pain illness with no cure, there better be a cure for this illness. I do not want to be passing out and crashing on floors, driveways, under tables and I forgot the other place.

    I’m on “bed rest” this week and I am fine with that, I will obey and be a very good patient but I’ve had enough; I want concrete answers and I will not stop until I get them.

    * I want to THANK members of my “Moms” group who helped me with referrals, names and numbers within minutes of my request. They say “It Takes A Village” and yes, it certainly does.

    ass fur countingg my . as for salting my food? salt your vb oiwn foode doc .

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    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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