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 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) (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.

#103922368 / gettyimages.com

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.

Something Was Wrong, It Was Me

High Anxiety (Photo credit: Wikipedia)

It arrived every evening like a suspicious stranger, its presence like black fog slipping under the door. It was deceiving at first, mist, started slowly and then it changed in a split second and attacked me. I felt like I was being stabbed with an ice pick, repeatedly, the chill of cold anxiety running up and down my spine. The goal apparently was to shock me and knock me totally off-balance. It won, I didn’t stand a chance.  I don’t know why it came. I certainly didn’t invite it nor could I prevent it and its malicious presence only showed itself to me after dark.

I don’t know why it happened and I never completely understood it but the displeasure was here, every single night. I tried every trick I knew: deep breathing and meditation, but I did not stand a chance, it felt like I had been swept up by a tornado. Actually, I  lived in the eye of that tornado, I felt helpless, yes, out of control, out of control, out of control…

In past years during this same time period I felt sad, weepy. In the past eleven years I have known grief and a feeling of longing but not anxiety. Major life events happened, I felt loss , my dad was deceased but fear? This year without the regular Thanksgiving plans, control escaped me and anxiety with its octopus legs strapped me in and squeezed me so tight I could not breathe properly. Maybe Thanksgiving, without check lists and red lines crossed off made me feel undone. Would it be five people or nine? Last minute? I used to be so flexible, what happened to me? I missed feeling in charge, in control. I was alone in the world, it put me off-center, dizzy with fright.

I had trouble sleeping and eating and with my chronic pain disorder, Fibromyalgia, I questioned if this could have been a flare-up? Very possibly but I don’t know. The physical pain is the same but the IBS and the anxiety are on over drive.  Anxiety rolls in my stomach like one of those slippery aqua blue water park slides that I hate, wet,  flying down way too fast. I went on one of those once when my children were little and pleaded me to go on one of the rides with them. Trying to be a good mother and show them that fear should not stand in one’s way I relented, seeing their shiny little faces. Big mistake. I laid on my back and flew down the twisting spiral of hell screaming all the way down only to see them at the bottom, laughing. “Why did you lie on your back, Mom, didn’t you know that is the fastest way to go down?” OF COURSE NOT!!!

I felt like I have been on that water slide for at least two weeks except in my head and my body. I’m in my own zone of panic. Nothing worked, nothing helped, my last resort was to try to listen to music which has helped in the past. No luck. Maybe I’m just so excited that tomorrow I will be seeing my children, home for the holiday? Maybe I am feeling out of control not knowing if we will be five or nine people? Or maybe the last four, stressful weeks have finally caught up to me: my husband got laid off, I had to have painful uterine biopsies and on the way to my doctor’s appointment I had a flat tire. I found out my friend and her husband both needed surgery, I took on my friend’s problems too.

Maybe I’m anxious now because I couldn’t allow myself to be anxious before. The food lists are really not important, there will be plenty of food, no matter who comes. My friends will be fine. My husband will eventually find a job and we are not living out on the streets. My tests results came out perfectly. AAA apologized for dropping my call, twice and they paid for the private road side assistance. I’m taking a deep breath, it feels good. All of a sudden, I feel like listening to music and I’m getting a little tired. That’s got to be a good sign. I hope.

Haiku Heights-Green

A Thick Forest (Photo credit: Jon Person)

*Envy steals the soul

Gripping, stomach shooting, pain

Life lost in the past

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Forest, milky dew

Inhaling fir, musty leaves

Crisp apples of sun

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Ocean, sea of lights

Tumbling green, gray-blue colors

Looking for lace foam.

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*Dedicated To Tammy Spice, who once had a doctor that destroyed her life. I wish I could take the pain away from you. Please keep on fighting.

*Carry on Tuesday: A few of my favorite things

Wherever I go, I arrive early. Not on time like most people but about twenty minutes before my scheduled appointment. Don’t get me wrong, I am in no rush to be in any doctor’s office, especially this doctor. I think ‘I just want to be there and get it over with.’ The walls are pale pink, the chairs alternate between fuchsia and plum, first one than the other, all around the room. When I am here I just want to re-arrange the chairs, put all the fuchsia together and then the plum or put all the chairs in the middle of the room and stack them up. I know this room well. This morning I sit in the waiting room with a woman named Mary, she is here alone too. Once in a while a husband, boyfriend, lover, brother comes too. I sit here with my anxiety waiting for the nurse to call my name.

My doctor is the product of two old hippies, his first name is Pond. No really, I couldn’t make that up if I tried. Pond enters the examining room and I automatically sit straight up, with the blue hospital gown open in the front. He is a breast surgeon that I see every every year. He examines my breasts, first one than the other; I wish he would close his eyes but mostly he stares into space. He starts talking about his vacation in the Hamptons and I shush him, telling him to concentrate. He laughs and says “It’s a good thing I’m not chewing gum, right?” I say a quick, terse yes. I am waiting for him to say, the usual breezy, “it’s all good” but this time he goes over and over one spot on my right breast and kneads it as if he is making bread. I become perfectly still and feel freezing cold in less than one second.

I pick up on another vibe in the room that has changed; I know something is wrong. He straightens up and in his bright blue eyes there is a new hue of concern. His face is still unreadable but his forehead now has deep wrinkles. I have never seen that before but I have always dreaded it. “There’s a mass, ” he says. He has me feel what he feels, but I barely want to touch my body since there seems to be an intruder there, a most unwelcome guest. This is a feeling I had before when I needed a biopsy of a lump, thirty years ago. I was very young then and very naive.  I remember my parents drove up from New York to Boston to stay with me while I waited for the results. Dear God, those feelings of fear and panic come back immediately.

Now, I am a postmenopausal woman but before I was a youngster, a youngster in shock. I remember going to the doctor with my best friend. ‘It would be nothing,’ we thought but I ended up needing surgery though the lump turned out to be benign. I remember staring into the mirror and drinking coffee, day by day, early in the morning of my one bedroom apartment and wondering how I could still drink coffee normally and function at work with this huge secret.

I have to focus now but I can’t; crazy things go through my mind like the scene in Mary Poppins with the chimney sweeps dancing. I see Lassie in the closing credits where he puts his paw up and remember that my sister and I always loved that part the best. I try to remember the lyrics of a song I just bought on iTunes that reminds me of my teenagers but my mind goes blank.

The nurse schedules me to come back in a few days for a needle biopsy, that is familiar too. I try to remain perfectly still, trying to clear the thoughts and panic clouding my mind but it is virtually impossible. What can I focus on, I ask myself? My daughter’s blue eyes, my son’s olive complexion, my husband’s kiss on top of my head, my sister and I posing for photographs on a rooftop in Brooklyn Heights, my mother’s soft hands. I try to picture my puppy Lucy but the images change to my deceased dog, Storm, who died unexpectedly and dramatically of cancer of the spleen. I can only try to remember highlights of my past favorite things. It’s my only chance of survival: I remember the free trip to Hawaii when we were upgraded to first class, the small town of Roses near Barcelona, Spain. My favorite memory, sunsets at  Cape Cod when the children were young, when we were all young. I try to imagine these things to steer my mind away from the doctor and nurse talking to me about scheduling a possible biopsy of my breast tissue yet I can’t remember one thing they said. As soon as you feel like you are a patient, you become one. I feel weak and tired, sore, and very, very cold even though it is 93 degrees outside and humid.

I need to drive home, alone, in my car down the parkway that winds and bends dramatically. How can I calm myself down enough to do this and not crash my car into a tree? I have no idea. I turn on the engine and on automatic pilot, I just point my car in the right direction. Luckily, the car seems to take over and I am just a passenger at the wheel, driving slowly, steadily, on my way home.

*I wrote this last night before my appointment. While some of the facts are true, the end and some details are all FICTION.

The Measure Of Time

When I was twelve I measured time in two-week increments. Every other Wednesday night my friend Brian and I would have to go to our orthodontist appointment. One of our dad’s always drove us.  I renamed the orthodontist “Dr. Tuna Fish Hands” since he apparently had tuna salad for dinner, twice a month, right before we came. It took years for me to ever eat tuna again.

Now, I measure time in annual mammograms. It seems like just when I thought I was in the clear for another year, it’s October again and I am sitting with other anxious women, draped in thin navy blue robes. no deodorant or powder allowed. I feel the same dread every year; I feel nauseous and anxious and scared. If I get cleared I then worry about my mother and my sister.

I woke up at five in the morning, last week, a little early for my 8 am appointment. I couldn’t go back to sleep so I took my dog out for a walk in the early morning darkness. After that, I huddled in Starbucks to drink a very strong cup of coffee for much-needed energy. I then drove to the lab at the medical center and at 7:45 I wrote my name down on the appointment list. Twenty minutes later, they called my name, a couple of other women were called too.

We all had to change and then we sat together in a tiny corner of the room. My neighbor’s foot shook, the woman across from me was sighing heavily, I did both. I couldn’t concentrate on reading even though I brought a book. I seem to do that every year and I never get past the first two sentences.  Finally, they called my name to go into the Mammography room. I don’t care about the physical discomfort at all, just the results. I went back to the room and waited for the results. My name was not called. I saw a new batch of women come and go with relieved smiles happily clutching their piece of paper which basically says “No Change, See You In A Year.”

I waited and waited some more. Two more groups of anxious looking women came in and left and I was still sitting there focusing on accepting my fate and concentrating on breathing deeply. Finally, after an hour and a half, I couldn’t stand it anymore and I asked the nurse if I could speak to the radiologist. She rolled her eyes and said “We don’t do it that way, you have to wait.” I had had it by then so I said politely, “I would like to see him, please, for just for a second.” She wasn’t happy; she rolled her eyes up inside her head, sighed and slammed the office door but she did come back to get me a minute later.

The doctor sat leaning back on his chair as if he was sunbathing in Honolulu. I didn’t even have to speak when he offhandedly said “Oh, everything is just fine, it’s exactly like last year’s.”  Um, what?  I was too stunned to feel relieved but finally mustered up the courage to ask why I had to wait an hour and a half for the news? “You are scheduled for an ultra-sound soon, he droned, so I thought we would wait to see the whole picture.” In a nice tone of voice I said, “I’ve been coming here for fifteen years and the doctor has always seen me in-between the tests and told me the results.” His answer? “NO, we never do it that way.” “Are you kidding me” I wanted to yell? I KNOW they do it like this, I’ve had it done for the past fifteen years.” He shook his head no. Apparently, either the rules changed or he didn’t want to take the extra step. I couldn’t fight the system any longer. I was sent back to wait for my ultra-sound.

The ultra-sound took another forty minutes and I didn’t utter a sound. I understand that even if it feels like they have been over the same spot a thousand times, it is their job to be thorough. I took some more deep breaths even though I lay tilted on the side of the examining table, close to the edge. I felt if I had to move another inch I would land on the floor, breaking ribs and fracturing an ankle or two.

Finally, the ultra-sound was complete. I was sent back to the jolly radiologist, now with a Pina Colada in his hand (sorry, I couldn’t resist) and he said “everything is perfect”  and bid me adieu. It had been over two and a half hours, dozens of women had come and gone. I walked to the changing room to retrieve my clothing; I was so tired and spent, it was hard to accept the happiness. As I walked through the bright red exit door sign, I paused and gave my personal thanks for this year’s reprieve and then limped to my car. Time of appointment 8AM, time I left 11:00 AM but I’m not complaining, I can’t. Because between my shaking fingers, I too clutched a piece of paper that said “See you next year.”

Banana Milkshakes

Image via Wikipedia

I feel really poorly again today and I don’t know why. Every step hurts, every joint aches, every muscle is stiff, and I’m not hungry, which is definitely unusual. The windows had been open with fresh air coming in but I missed the comfort of the cool air conditioner and a cozy blanket and the room swaying like a slow-motion ballet. My head is pounding and I feel weak, it’s hard to move, hard to think, I feel like throwing up but can’t.

I tried Alleve for my body aches and headache but it didn’t help. I always question and try to diagnose my ailments and when I come up with no new answers, I sigh and breathe deeply and think “Fibromyalgia Flare?” Or maybe it’s the flu or too many allergens, a virus or just a few bad days. At this point I don’t care what it is or what it is called, I just know I am back in bed, with my dog near me and my mood, weary. I’m tired of being tired and achy and I want to slip into my sneakers and go places, see people. Instead, I am alone with my book but I haven’t read one single page.

I tried so hard to heal myself and I made a banana milkshake, with very ripe bananas, milk and ice and sipped it slowly to try to soothe my spirits, to hydrate myself with bright and shiny, nutritious food. It didn’t help and I am disappointed; I thought for sure that the banana milkshake cure would help me. I tried to listen to music and sing but I just couldn’t stand to listen to the music, so I stayed silent, listening only to the beating downpour of rain attacking my windows. I can’t even think of leaving my bed to help out with driving and that makes me feel both guilty and drained; my head pounds harder, my whole body feels hot and it burns like a slow-cooker, constant with a warm temperature.

Last night I felt worse than today and I tried to cure my evening with chocolate. There’s a lot to be said about half a big pack of M & M’s at the end of a very long day. I chose each pretty color to pop into my mouth and crunch. I know it is not right to treat illness and malaise with food  but once in a while, the cheerful colors of M & M’s soothe me, the endorphins kick in and I go to sleep.

Perhaps tomorrow I will feel chipper and I will wake up happy, my head and eyes clear and more energy in my body. Maybe my legs will swing over my bed and I will greet the day with enthusiasm. But if not, maybe it will happen the next day or the one after that. If I still feel the same way I will eat the rest of the pack of M & M’s, make another banana milkshake and begrudgingly call the doctor. I will have to go in to see her and she will most probably tell me “it’s viral, go back to bed and drink plenty of liquids” as if I didn’t know that already.

Someone I Wish I Were Closer To

Image via Wikipedia

*”She Rides In The Front Seat, She’s My Older Sister”

* song by Carly Simon

I didn’t have to think long for an answer; the question was already answered in my mind and in my heart before I stopped reading the prompt. Who would I pick?  My sister. We look nothing alike but many people say we sound exactly alike, especially on the phone. Sounding identical on the phone came in very handy for practical jokes when she grew tired of talking to a guy or a girlfriend and handed the receiver over to me; I joyfully took over. No one ever knew, we laughed about that a lot, it is still a funny memory. We tricked our dad all the time he could never tell us apart on the phone, tricking mom was a challenge but we even got her once or twice.

We may be connected by blood but we don’t really have a lot in common. Our mother and father used to call us Day and Night, probably not a good thing to encourage a warm, trusting, sibling relationship but they were right. You probably could not find two more dissimilar sisters if you tried.

We are opposite in most everything. If I love a movie (Ferris Bueller) she will hate it. If she recommends a Doctor (she did) I hated him on sight. We have no preconceived notions it’s just that are tastes are so different. When she picks out a present for someone she buys what she would love to have; when I buy a present I think of what the person will like based on who they are.

Our hearts must be wired differently as well as our personalities. I’m trying so hard, so deliberately NOT to push buttons or start a fight. We have the same issues for each other yet with different circumstances. I feel like I walk on eggshells when I talk to her and she feels the same way about me. There are dangerous, hidden explosive mines that should probably all be detonated by now but I’m afraid they are not. They explode a few times a year and I’m being conservative.

I always wanted a Hallmark sister, I longed to buy one of those cards that said “To My Sister And Best Friend” but I couldn’t. I wanted us to be the two sisters in the photograph above, loving, sweet, bound by an indescribable connection. I wanted an older sister to play with me, someone I could rely on for support and warmth. Someone that would teach me things about boys and make-up but our five and a half-year difference and our different styles made it hard if not impossible. She probably wanted another person like herself, more adventurous and wild but we can’t seem to meet half way on anything.

I love my sister, I wish we weren’t that different but we are. Understanding each other will never happen; now we are trying for acceptance but that’s really hard too. I wish my sister was my friend, I wish she was my best friend but she isn’t. I wish we didn’t have the complicated emotional history we have; we’re the Yankees vs the Red Sox, the chocolate to vanilla, our pet names for each other were “stupid” and “ugly” and that just sounds so wrong. But, we were also “tuna fish” as we said good-night to each other through a fake wall partition and “peanut butter,” and that exchange usually lasted a good ten or fifteen minutes or more. Until one of us started to get tired and then we would ask good-naturedly “What time is it?” just to prolong our simple game.

My most favorite memories when we were older and our parents would still be sleeping but she and I would wake up and gather around the kitchen’s white formica table and sip coffee together and talk. In the end, she is my only sibling and when our mother dies we will have our history and memories to link us together. Maybe then, we will be able to put away our differences and cling to what we have left: each other.

REPOST: FOR INVISIBLE ILLNESS WEEK:Thyroid Disease And Fibromyalgia With A Touch Of Menopause

Image by quinn.anya via Flickr

I am NOT a Doctor. I may see a lot of Doctors but in no way am I one. I don’t pretend to be one. However, I am a patient, a chronic pain patient and I believe I know a whole lot more, personally, about these subjects than some Doctors do. Sorry, but it is true. This is only what I THINK, only what I FEEL and only what I have EXPERIENCED. For those who have read earlier posts about my dealings with Fibromyalgia, Hashimoto’s Thyroiditis and Menopause, this is different; I’ve never once put my own theories down on (computer) paper. Also, for the young woman who responded to a post saying she will check out Fibromyalgia even though her Doctor said “He didn’t believe in it”  YOU GO GIRL!

I hope this will take the five or more years of suffering that I had to go through and help someone; HELPING just one person would make me extremely happy. I mean that from my heart. I think there is a correlation with the above- mentioned diseases/changes, at least for me there was, especially with Thyroid Disease and Fibromyalgia.

I went through Menopause about five years ago, it wasn’t too bad, I had the usual symptoms but it wasn’t anything I couldn’t bare. I think that Menopause was the catalyst to all these (bad) changes in my body. After being in menopause, I went to my annual physical where my Internist did the usual blood work. When the results came back, for the first time in my life, I had an underactive thyroid. (Thyroid disease DOES run in my family, both my mother and sister have it.) I was put on Synthroid (my opinion ONLY: I use brand name, NOT the generic.)  My symptoms were chronic pain, muscle pain, severe aches and pain, and extreme fatigue.  My own quote: ” I felt like I had the flu without the fever.” That is what I felt like day in and day out. I thought the Synthroid  (for my underactive thyroid) would help but it never did. For months I was in bed feeling worse and worse, my said Internist said “there is nothing further I can do for you” and walked out of the room leaving me inside, on the examining table, sobbing. True story.

She finally referred me to a Rheumatologist who looked at me and said I had “Scoliosis” and that with my thyroid disease (an auto-immune disease: Hashimoto’s Thyroiditis) I should be prepared to get OTHER auto-immune diseases. Gee, thanks. There was no mention of Fibromyalgia and since when did I have Scoliosis? Whatever.

I felt horrible, chronic pain, muscle pain, joint pain, I could barely get out of bed. I won’t even mention the doctor ( he gets lower case on purpose!) that I went to who treated me with very DANGEROUS drugs, I will spare you that. I have Fibromyalgia and I really do think, there may be a connection between Thyroid disease and Fibromyalgia. AGAIN, I am not a doctor. However, I recently read about a new study where they are trying to see if T3 levels are linked to Fibromyalgia. (Promising!?)

Please, if you are experiencing all the symptoms I mentioned, don’t let an ignorant doctor make you feel like a fool. You know YOUR body best. Keep fighting, keep researching and, go to a good Rheumatologist, this is the Doctor that you need for Fibromyalgia. I have a friend who has a Thyroid condition like me (Hashimoto’s Thyroiditis) and a severe case of Fibromyalgia and she only goes to an Endocrinologist. Big Mistake but she will not listen to me. Don’t be like her. I just want to help. If you do see a Doctor that scoffs at Fibromyalgia and doesn’t believe in it: leave, do not stay. Check out your Doctor on-line, I chose mine from a list that said he believed in Fibromyalgia, treated it and patients loved him. I am one of his biggest fans. You deserve this too. Good luck.

Yes, There Is HOPE For Fibromyalgia

I have made a lot of friends on some of the Fibromyalgia support groups on-line. I was diagnosed with Fibromyalgia about five years ago. Five years that have crawled at a snail’s pace, going backwards and forwards, up and down, down, down. I wanted to write this blog post for all my fellow Fibromyalgia sufferers and tell you that while there may not be a cure, I have improved.

I never thought I would be able to get out of my bed and get to the bathroom without all the serious, horrendous, stiff, and chronic pain I have had for many years. I never expected perfect, I don’t now, but I do know improvement and I have improved. I almost want to cross my fingers while typing this so I don’t “Jinx” myself, I’m sure all of you can relate to what I am talking about.

I will always have good days and bad days, that is a realization I have accepted. I have taken, in the past, probably about thirty different medications in different combinations and this is the fourth Rheumatologist I have seen (and will continue to see.) While your Doctor does NOT have to be your best friend, you should feel that he/she believes in you AND in Fibromyalgia as a chronic pain disease. That’s very important. The Rheumatologist I went to before this called Fibromyalgia a “lazy diagnosis” and attempted to treat my pain with dangerous immunosuppresant drugs that made me sick as a dog for months at a time. He did this because combined with Fibromyalgia, I also have an auto-immune disease called Hashimoto’s Thyroiditis. I didn’t know better so I followed his advice and took seriously harmful drugs at a dosage that should never have been prescribed. This old Doctor was a genius, but not in Fibromyalgia and not in being pleasant and understanding. As my present Doctor put it referring to my old doctor “it’s his way or the highway.” Don’t accept that.

I am now on a combination of drugs that not only treat my symptoms but also have treated my energy levels. I am NOT running any marathons, believe me and I have flare-ups that still can make me cry, but overall, at least on some days I am better. Please, do not give up hope, do whatever you have to do to find a good Rheumatologist and only a Rhematologist that believes in you and the disease. One where you feel that he/she really wants you to get better and that they truly do care. Don’t settle for less.

We all deserve better and I just wanted to say to all my on-line friends (Hi Graceful Agony Ladies, Chronic Babes, ohmyachesandpains, etc.) please don’t give up and thank you for always being there for me; I love you all.  To friends that are new or newly diagnosed I NEVER  thought I would feel any better and now I do. How long will it last? I have no idea. I have accepted my limitations, I accept that I will have bad days as well as good but I can say for sure, that compared to how I felt five years ago, I am better. My attitude is better too.

If anyone is interested in which drugs work for ME, I would be happy to tell you. Don’t give up, I almost did. If you are new to this and don’t know how you are feeling or if you are feeling mad and angry and sorry for yourself; go ahead, you deserve it. Been there, done that and try to stay in the present, not the past or the future. As my dad used to say to me “Be in Neutral.” It’s a life lesson from my dad that has stayed with me, try it, it might help you too.

Please, Mama

Image via Wikipedia

Don’t give up the fight, Mama. It’s okay to feel anxious but please don’t give up; don’t fall into the rapid hole of deterioration like a black funnel cloud gaining speed. What can I do to keep you from slipping? I will hold your soft downy hands with all of my strength so you don’t go anywhere and you have no choice but to stand up like a strong, red oak tree. I will not let you down; I promise. Have a little faith, accept the bad things that have happened and move past it.

Dad gave up but he had no interest in living anymore because he was so depressed. Do you remember? The light in his blue-gray eyes had been extinguished two years before. He was not the same dad that brought us up, the joking, warm, TWA company guy that took us to eat in the airline terminal. He was not the same husband that protected you and took care of you and adored you and your less than stellar cooking attempts.  You “cooked” mashed potatoes out of dehydrated flakes that you poured into a pot and heated with tepid water or with milk. Dad made his own concoctions for dessert: red, strawberry, glistening, jello mixed with canned fruit cocktail and yogurt. To top it off he added applesauce and rainbow sprinkles. He said you were his favorite cook bar none. No restaurant compared to your cooking; that was real love.

He became an old man who had difficulty walking, he shuffled and it was heart-breaking to watch. I was fearful anytime he walked up or down my three front steps that he would fall over. He refused to use a cane, or a walker, his vanity meant more than everything else. At least he had his dignity to the very end. I was lucky to see him when he was still fighting. I was there when the Doctor asked him if he would be “amenable to training so he could use a walker.” He looked up at her and said “NO, Doctor, I am not amenable to that at all!” I remember he wore his white down jacket with the bright red lining inside. I wore that puffy jacket for months after he died. I wear the chain he always wore for luck. I lost daddy years before he died, we all did.

I pray that you will bounce back, mom, and that the pain of the last six months will dissipate forever. You have fallen twice in a short period of time, you broke your wrist and your vertebrae and now we just want to keep your bones strong by taking the drug, “Reclast.” The “drug whose name shall not be mentioned” that gives you nightmares and anxiety attacks and too much fear. You had a vicious bout with a grueling flu that kept you in bed and dehydrated with high temperatures that confused your own doctor. She made you go to the Emergency Room, I met you there. You got through that, now, you have to work through the past to the present and the future. Think about your favorite occupation in the summer time, swimming in your condo’s pool with its chlorinated clear, blue water and the temperature of a warm bath. You will be surrounded by friends, and fans. You will hold court in the shade while people gather around you like the Queen that you know you are.

We all get older but I don’t want to get older without you by my side. You are the first person I call when I have any type of news. You are the one that tells me that beneath my emotional mush, “I am very strong inside, like steel” and sometimes I need to be reminded. Mama, be abrasive or demanding and unreasonable. Really, its fine. You can remind me that I should exercise more and get mad at your grandchildren for not calling often enough.

I am not ready, I never will be ready to give you up. I want to play “tickle fingers” on your hands like we used to do when I was a small child. I want to see the flirtatious woman I know, engaging with everyone you meet because people are drawn to you like moths to light.  Don’t forget our famous song by Helen Reddy: “You and Me Against The World.” I will sing it for you if you want but mostly I want to sing it with you.

Love,

Your Daughter