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.

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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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Hasn’t It All Been Said Already?

My Life is getting old. Not just the years that have accumulated but the scenarios in my past and present, future too. If it’s not just one calamity after another, it’s another gross disappointment or health issue and the black cloud  that looms above us. Circling us like black hawks over newly killed animals waiting to swoop down excited to eat.

Black Hole Sun

Black Hole Sun (Photo credit: amira_a)

Yes, dear optimistic people, I do try so hard to project a positive image, I send healing thoughts and love to the Universe, I pray for good things for all and not just myself, I try to make a positive difference in the world in any small way I can. I smile, I care, I reach out, I do good deeds, willingly, lovingly.

What happens? Nothing much. If I can make someone laugh or smile that’s a definite plus, if I can offer an elderly person my arm to cross the street or to carry their grocery bags, that’s great, I feel good for a second. Then, that feeling goes away.

Day # 8

Day # 8 (Photo credit: .Nena.)

Poof.

Doing nice things is not the answer, I know, feeling good things will happen, is sure part of it but I’ve felt that for so long it is tiring me out. I have tried that approach for many, many months and I am burned out. I am  exhausted, hoping, that life will take a turn for the better.

Here we sit, my brown pillow and in the house on a sunny day, lying on the bed with no energy.  I could be doing many things but I have no energy, no will, just an overwhelming feeling of tiredness. I’m taking comfort in hiding, resting and blaming my Fibromyalgia for all that ails me and so much more.

 

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Did I Say There Was HOPE For Fibromyalgia? WRONG.

Flower alone

Flower alone (Photo credit: @Doug88888)

9/13/13

Earth to me. Earth to me. Calling all hallucinogenic hopefuls down to reality please. Yes, I know, I was one of them. Me, optimistic, me. Funny, quirky, stupid, friggin  me. What the hell did I know? DId you believe me? I believed me. I really did until I woke up in reality which was just recently. I used to think of the world as a good place but that stopped a long, long time ago, probably with September 11th. That shook me up and the world still keeps shaking me up and not with good things. I know, I’m a late bloomer and gullible as all heck. There will always be two different “Me’s.” Before and after.

I’m jaded, Jaded and faded and disillusioned. Know what my mother’s advice was to me? “Lower your expectations, “I did. No rah-rah speech from her which is not exactly her style to begin with. My dad used to be Mr. Educational Talk when he was alive, think positive, be optimistic, you can do it if you THINK you can do it. He gave “pep” talks to anyone who would listen and yes he believed it and I tried to believe it too, tried to change. But, at the end of his life he was terribly sick and depressed and didn’t want to get out of bed or listen to his favorite Viennese waltzes that had delighted him all of his life. He was a shadow of himself, a shell of a man, it went so quickly and so slowly at the same time. It’s hard to remember when he was last really happy, I have a photo of his birthday, I treasure that photograph. The birthday candles were lit, he was beaming with joy, but it was many years before his death.

I’ve gone to the dark side. Plain and simple. Life is about love and love is about abandonment. Gone. Hello, I am here. I love you. I now will leave you. Good-bye. You are born alone and you die alone. You should pretty much plan to be alone a lot in your lifetime because no one loves you like your mother or father does, or your spouse/partner. You love your kids more than anything, they are your heart and soul, the true essence of your being but it is not reciprocal. It can’t be. Their children will be the lights of their eyes, you need to stand back and make room for the next generation. You may still be in the picture but not upfront, from now on you are in the background and that is where you will stay, forever.

Remember that post I wrote on feeling blessedly numb and peaceful? Yes, that’s gone, it left as fast as it came. Had to do with children and my dead father and abandonment issues.  Just saying the word in my head brings tears to my eyes. Good old abandonment, am I the only nut job that has this umbrella issue? I would bet not. Life is scary sometimes, it’s the truth.

Many limitations from chronic illnesses: Fibromyalgia, Hashimoto Thyroiditis, I can not walk a straight line, my balance is worse than ever, my stamina is non-existent. I need to go into the city for an appointment to see my rheumatologist and I don’t have the strength to get there. Taking the train and a cab seems impossible, hiring a car service is ridiculously expensive and I can’t afford that. So, I keep postponing it which is the worst thing I can do.

I have to suck up my pride and ask my best friend for help, she’s already offered but I am not good at asking for things. I rather help than ask for help. So, today I have to promise myself that I will ask her for a ride to the city, pay for everything and appreciate that I have a friend I can ask albeit begrudgingly. I know I won’t get better, if anything I’m getting worse.

photo credit:@doug88888

written words copyrighted

Fibromyalgia And Flunking The Sobriety Test

Sunset Police Car

Sunset Police Car (Photo credit: Wikipedia)

Calm down, it’s not what you think. I can’t handle alcohol on ANY level, never could. Way back in my college days my friends would order a pitcher of beer and a Coke for me.  My now 20-year-old son’s advice is that I didn’t try hard enough. I should have just kept drinking because “it gets better.”  I’m sorry. I’m apparently a disappointment to my daughter and husband too.

One would think with my distaste for alcohol I would potentially have NO trouble with the law. That might not be the case. I went to my doctor, months ago, because I had consistent tingling in my legs and my internist (of course) referred me to a neurologist. The appointment was made and I forgot about it while my husband and I vacationed in Rhode Island for a few days. We had bright, sunny skies, we dug our toes into the silky sand, and ate raspberry scones, home-made sticky baked french toast for breakfast every day with a bowl of fresh blueberries and inexpensive lobster rolls at night. We napped daily.

One day I remember walking towards our car to my husband and then……. I was down……. I was on the floor, lying down, face down and have no idea what happened. Did I black out? Maybe. My knees and legs were bloody and filled with gravel but luckily my face was in good shape, apparently at the last-minute my husband said my arm came up instinctively to save my face. I hadn’t slipped on anything, there were no stones to tumble on, there was no logical reason this happened. I hadn’t twisted my ankle or sprained any ligament. I just went down. I wasn’t happy. Nobody was happy.

Upon my return I was even more nervous about seeing the neurologist who had ordered a plethora of tests including a CAT scan. My brain was perfect, the tests were perfect. Except for one. I could not, literally could NOT, walk a straight line. He told me I flunked that one outright and he had no idea why. He also felt there was no need to pursue it after seeing my brain scan. It’s true that a symptom of Fibromyalgia is imbalance but drunken-looking imbalance? Let’s say I was tired and driving sloppily, imagine a police car pulling me over and asking me to walk a straight line, maybe they would even give me a do-over since my breathalyzer test was normal…. I swear I’d be in the slammer pretty darn fast. Hopefully, you can still make one phone call. Even better, do you think I should get a doctor’s note?

Begging For A Diagnosis

Sad Little Girl

Sad Little Girl (Photo credit: Wikipedia)

I found myself in the waiting room of my Ear, Nose and Throat Specialist this afternoon actually praying for an inner ear infection. Yes, that’s what I said. I was praying for a diagnosis that would be fixed with a quick supply of an antibiotic, preferably a Z-pack. Done! No such luck. My ears have hurt me on and off for weeks. This was the second time I had been to the doctor in two months. Not only did my ears hurt but my entire face, under my eyes, my head, my forehead, my entire body was aching, as if I had the flu but I knew I didn’t.

Please, I groaned to myself, let me have an ear infection, or a throat infection, even eppiglottis, the dreaded disease that I have received so much mail about when I posted a blog about it. (* Calling Eppiglottitis A Bitch Is A Vast Understatement) Even that I could take if I have a diagnosis but no, my throat was fine, my ears were “perfect” I felt like I was five years old, alone, horrible and to the doctor I looked “good.” I’ve felt worse and worse and I don’t know why. The doctor told me it was probably my Fibromyalgia/TMJ……Nothing I didn’t know already. “Gee, I’m sorry,” he said “wish I could do more.” He patted me on my shoulder as he stared at my breasts and promised to call in a prescription strength type of Advil (which, he never did.)

My only hope is that I have my physical next week with my Internist ( a woman who does not even BELIEVE in Fibromyalgia) but at least she can run some blood tests and send them to my Rheumatologist. This is SO FRUSTRATING. Everyone just wants to throw different drugs at me and I don’t really want to take them. Take this, says the Rheumatologist and this, says the ENT,  but you need energy so take this, and there is nothing for pain so just live with it. I am tired of living with it and I can’t discuss this with my sister (or even have her READ THIS ENTRY) because it is not a safe topic for us. We can talk about many things, this is not one of them. Unless she can give me concrete examples of what exactly she would like me to try and how I can pay for it.

All I know is that I have been diagnosed with Fibromyalgia for six years now and after it got better, it has now gotten worse. Does Fibromyalgia get worse? Is this something new? Can I live like this? Is it the weather? An anxiety attack? I feel so vulnerable and so lousy that I cried in the waiting room from feeling so poorly.  I noticed a father with his teenage daughter; I missed my father who would have known how to kid me like that father did. I missed mine so desperately. Do emotions come to play in all of this? I think it’s probably all of the above and none of it is pretty. Not for me, not today, not until I feel better. I’m complaining, in writing. I should just shut up.

*https://hibernationnow.wordpress.com/2011/02/03/calling-epiglo…understatement

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.

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?

Fibromyalgia Update: It Just Gets Worse?

Magnetic Resonance Imaging - Human brain side view

Magnetic Resonance Imaging – Human brain side view (Photo credit: Wikipedia)

July 30, 2012

My Fibromyalgia update is not full of rainbows and unicorns and fairy dust, it’s plunking along through a slow and painful process, apparently it goes on forever. Now, in addition to Fibromyalgia and the auto-immune disease, Hashimoto’s Thyroiditis I’ve had to deal with Nuerological issues as well. Imbalance? Ah yes, you know it well.  Now I have another doctor to include to my semi-annual repertoire  and I have a feeling it isn’t ending here. Just a feeling though…..

I’ve already had a brain and cervical spine MRI, the results were fine. My new Nuerologist (yeah, now I have one of those too) sent me a note saying that everything was normal given my age. “MY AGE” as if I don’t feel old enough. I do remember in the exam he exclaimed” So, what you are telling me is that you were basically a healthy woman until you hit the age of 50.” That grounded me, but it is so true. I know we weren’t supposed to trust anyone over 30 when we were young but no one said anything about falling apart when turning 50. You would think that would be written somewhere, or at least a warning sent when you are 45, (“ENJOY YOUR NEXT FIVE YEARS!!!!) not that we would have believed anything so preposterous.

Whoever says 50 is the new 40 does NOT have Fibromyalglia, I can pretty much bet on that. Tell a person who has Fibromyalgia that 50 is the new 40 and you are most likely to get a response like “my ass it is.” I couldn’t agree more.  I am so frustrated with different doctors and medications, I’m tempted (merely tempted) to talk to my Rheumatologist and see what he says about stopping Savella. I know, I’m ALL talk, Savella helps me, at least a little. However, my Rheumatologist put me on something called Topomax which he said would help me and I took it for many months.  I took it until my balance was so off kilter (even more than usual) and my forgetfulness was at an all time high AND I was getting tingling in my feet and hands; that scared me. One look at my medical history and the Nuerologist immediately said: Topomax: First two side effects are tingling and imbalance. Seriously, Did my Rheumatologist not know that? You would think that my Internist would be involved in some way but if it isn’t strep throat or a sinus infection, “it’s not her job.”

Once in awhile I have taken to using a cane, especially when walking our really strong 5 month old puppy, but with an 18 year old daughter, who embarrasses easily, I think I will use it more in three weeks when she goes to college. Wednesday, I am going back to the Nuerologist for results of my tests, I will see what he has to say. I’m bringing my husband along with me to listen; I am a horrible “listener” at a doctor’s appointment. I think it’s called the “white coat syndrome” whatever the doctor says, I seem to only remember the one or two bad words. My husband is much better at things like that than I am.

Next week I will go to the Rheumatologist and try to straighten things out. I would ask one doctor to talk to the other but in the past few years I have noticed they really don’t like to do that. I know, “LIKE?” I will insist, because the only one who can manage my healthcare, let’s face it, is me.

I’ll keep you posted.