Dear Body,

I know you have been trying to listen to me and I appreciate the effort but now, finally I think you have seen the light, pardon the pun. You have known what to do all along but with your being stubborn (and not letting your sister be right) you have negated every suggestion from everyone else. That’s not bad, you need to listen to yourself.

At the same time, I am proud of you, so very proud that you have decided NOW to,( on your own ), to do something entirely different. You went into a bad slump for a day and a half the “I can’t do this anymore” cry

but you realized you really don’t have to give up. What a mood elevator that was!

Suddenly and slowly like each ray of a sunshine blooming like a petal you decided to do completely different. Instead of adding another med, you were going to stop them all. Yup, each and every one except for Synthroid which is medically warranted for your health. The others, well, you’re not stupid, you won’t go cold turkey, but you can talk (if you want) with each medical doctor and believe me there are way too many and discuss getting off the meds with ease. You are not asking IF you can do it but HOW. Hear that Doc? I am not asking your permission, this is my body and I’m taking it back.

You’ve had it in your germ-filled hands for exactly seven minutes each time. SEVEN MINUTES !!! I have (barely) seen you. My body, outside and inside deserves more than seven minutes. I need love, I need  respect and I deserve it. I know my body much better than you do. My instincts have never steered me wrong. Never. Can you say the same, that you have never given me the wrong diagnosis or the incorrect prescription. I thought not.

The other thing I will do and believe this is harder for me than the above is try to eat healthier foods and that means less processed foods. I can’t promise to throw my Kraft American Cheese Slices, individually wrapped, away, just yet, but I will only eat them when all other comfort foods are exhausted. I do make a mean chicken soup, all natural.

Chicken soup is a common classic comfort food ...

But, again, I’m not going to make myself feel bad if I go slowly in my process. And, I refuse to make quinoa on principle, kale too just because they are “popular.” I’ll wait six months to see what the new food trend is.

I’m not saying I wouldn’t order it for lunch at a cute local farm- to- land sweet restaurant my friend Sarah and I go to but I’m going to take just one step at a time.

There you have it, my intentions, to be healthier, naturally and stop throwing back these ridiculous pills the doctors have given me because that’s what they do. Maybe I’ll send this to Michael Finkelstein at the Sunraven Center and we will go full circle. Meditation instead of medication. (Love that !) At least when Danny finds a job or if he has a sliding scale. It’s worth a shot. ANYTHING is worth a shot. Be Grateful, Be Kind even more than you have been. Heal Yourself. The time is now.

Love,

Soul

ps: Dedicated to my new friend, Ken

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Eppiglottitis: Do I Dare Ask How We Fared?

Fellow eppiglottitis sufferers, you KNOW what I am talking about, don’t you?   How WAS your Winter? I know it’s still July but I am already on high alert just anticipating the cooler temperatures approaching.

This murderess, inexplicable disease comes quickly from one day to another landing at any time, in one very specific place, beyond the throat, with no warning whatsoever.  All the patients are sure of is at least ten to fourteen days of hell and the most excruciating pain we have ever felt. Am I wrong?

Acute catarrhal pharyngitis. The oropharynx is...I just crossed my fingers so I will not jinx anybody, including MYSELF. Many people have written and asked me about this disease and while I have always followed up on each e-mail, now I want to ask how everyone did this Winter? I narrowly escaped it this year but I’m sure it’s on my To Do: List for this Fall. It’s hard to believe that you would be lucky twice in a row.

Does anyone care to share?  All “jinxes” are off and if they are on, I will be the one to get it because I initiated this damn blog. We share the same, horrifying experience, we feel the same excruciating pain and for all the pills to swallow and liquid to gargle it takes a long time to even feel the beginning of recovery.

pillsAs I mentioned in my earlier blog, “Calling Eppiglottitis A Bitch Is A Vast Understatement” the first time it happened, my ENT scoped me and said out loud “How the hell did you get THAT?” My answer, in my head, was “isn’t that your job, Bozo?” Which of course I didn’t say (basically because it was too painful to talk.)

Worst. Pain. Ever. Childbirth is like a little cramp compared to this misery of hell. There are no pain pills that can keep up. Literally, none. Be thankful if you can still breathe and get yourself to the Emergency Room ASAP.

It starts as a simple, little sore throat and then our alarm bells are on alert…we are always aware that this could be an invitation to the deadly Eppiglottitis instead of just a regular old-fashioned cold. If a sore throat lasts more than a few days/ gets progressively worse, I haul my behind to the ENT where he will insert a tube (sorry) through my nose to look at the usually ulcerated gap beyond where the throat lies.

Swallowing is torture. Pure torture. I did read of a trick that, while it may sound disgusting, has a definite advantage: don’t swallow. How, you ask? Lie on your stomach and have a spit bowl. Next time I have it I am definitely trying that. What could be worse than that razor blade swallow. Nothing.

Also, get your behind to an infectious disease specialist, I have never been but I plan to go the next time this horrible disease stops by to visit.

Person washing his hands

I hope you have a wonderful  rest of the summer and do keep in touch with me in the Fall and of course in the dreaded Winter. Keep washing your hands as much as you can (it will make YOU feel better) but no matter what you will get through it if it should creep up on you again. Trust me, I know.

 

Just A Tiny Bit Of Cancer

Overview of the thyroid system (See Wikipedia:...

Overview of the thyroid system (See Wikipedia:Thyroid). To discuss image, please see Talk:Human body diagrams (Photo credit: Wikipedia)

Demi, one of my oldest best friends has just been diagnosed with thyroid cancer. “The good kind of cancer” as she was told. “If you are going to get cancer, have thyroid because it is contained.” It’s not like breast cancer or bone cancer or ovarian cancer and it’s not pancreatic so be thankful for what you have. But, it’s one weird way of thinking even though I guess I can understand it. From what these doctors have said she has the “good” kind of cancer but she’s not feeling so happy.

She had waited a good two and a half weeks for the results from her thyroid biopsies. They weren’t unclear, they were short-staffed and it was around Christmas and New Year’s Eve. Try not to be sick around the Holidays, please.  I did research for her especially from my neighbor across the street, who had gone through the same, exact process six years ago.  She said and I quote:”If I can give any advice, I would tell her not to take the chance that I did and only have half the thyroid removed. If there is suspicion of cancer, let them take the whole thing out. You don’t really need your thyroid anyway.” I totally agreed, because if it was cancerous, why have two separate surgeries?

Coming from my family where three out of three of us are on Synthroid (brand name only which is like a Bible to us) I talked to my friend daily. She had slide after slide of her thyroid tested without surgery, all results came back “inconclusive.” What the hell is “inconclusive” anyway? Who likes “inconclusive?” You sure can’t celebrate but there’s no reason for weeping. Inconclusive is just that, to me, basically a shrug of the shoulders signifying “we have no idea,  could go either way “60 percent chance there is no cancer, 40 percent chance there is” quoted top specialists at both Memorial Sloan Kettering and St. Francis Hospital in New York according to my friend.

Finally, on New Year’s Eve she gets the call from her surgeon and it IS cancer. I stop breathing, I am in shock and so is she. I remember saying to her “Wait, what?” She tells me again. We are both in shock. So now she waits, until the puffiness around her scar from her first surgery goes down before she goes in again for the rest of her thyroid to be removed and a nodule to be removed as well. More surgery, more anesthesia, more pain. It was the first time that she and I, usually pessimistic, chose to be positive and optimistic and spiritual. The one time. As soon as I heard the news, I looked at my husband and said “see what happens when I am optimistic?” He replied dryly: “I was waiting for that….”

I knew my best friend, stubborn, beyond stubborn,would not heed my neighbor’s advice or mine. If it didn’t NEED to come out it was staying inside her body. I can understand that (well, I cannot) but I knew she felt this way. This dear woman will not even take an aspirin or any type of medicine unless she absolutely is forced too. Compared to her I am a junkie waiting for Methadone. Having Fibromyalgia I know pain, all too well and even with prescribed medicine it does nothing for the pain.

When she told me that she did, indeed, take the pain medicine in the hospital and stayed overnight I was in surprised but happy she was open-minded. Now, post surgery, her surgeon is getting annoyed at her repetitive questioning. You know that tone: “AS I SAID BEFORE…” not good. But, good for my friend that she keeps asking until she gets her answers. Way to go, girlfriend.

She has another three weeks to go until the next thyroid surgery. This time, I’m wearing black, I’m feeling negative, doomed and totally pessimistic. Bad news all around. We both are. We deserve it. That’s what best friends are for.

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FWF: Kellie Elmore

Sad Little Girl

Sad Little Girl (Photo credit: Wikipedia)

everything i could never tell you

I’m sorry, baby girl, I was barely a teen then, I didn’t know there was a name for what your mama had. I just knew she closed herself in her bedroom, turned the lights off and had me babysit you every afternoon. She hid under the covers because she was really sad and all you could hear from her bedroom was her sobbing. I kept the television on to try to protect you from the sounds.

You know, back then, it didn’t even have a name, just crazy. Your mama was chronically depressed and it is like every other illness but years ago it was shameful. Thank God, now, people know more and there are medications and no shame involved.

When I would walk up one flight of dusty, gray stairs, your smile would brighten your entire face like sunshine and your cheeks would turn rosy pink as soon as you saw me. Your mama would scream sometimes, but she couldn’t control herself. Oh, I know you pity yourself but I’m sure it was not easy for her, she was very sad every minute of every day. Yes, it WAS hard for you but you are a grown-up now, can you now think about what it was like for her?

What I remember most, for some funny reason, is that she used to make two pale chicken legs in the toaster oven. Oil or butter turning into bubbles on those nasty looking legs. You must have eaten them after I left but I kept thinking “where was the rice and the salad?” Was there bread and butter to eat?  I could picture you and your mama eating one sickly yellow chicken leg each and you drinking your glass of milk.

Your mom never let you have candy so with my babysitting money I would hold your hand and take you into the candy store and let you pick out a chocolate bar and tell you it was our secret. I didn’t care about lying to your mom, she wouldn’t even have noticed. I just wanted you to have a little happiness in your life, I wanted you to be able to be a kid for a short time, anyway. Your eyes would glisten like stars on a dark night, with happiness and excitement, you were lit up like electricity in a lamp.

I met you for lunch once when we were both adults, I didn’t know you anymore. You hated your parents,  you hated everything, nothing but hate and coldness inside you. This was way before your older sister became sick too and I adored her as well. I know you were wonderful to her, you did everything for her and everyone knew that, there was the goodness in you.That sweet little girl came back to be her sister’s angel, but when she died, it died too.

We didn’t know about the funeral, no one told us. As soon as we found out we raced to your mom’s apartment where your cold, icy, blue eyes looked through us. I wanted to hug you, but you didn’t let anyone close enough to even say we were sorry. Why? You were blaming us for something we had no control over but you were the queen of control, right?

You built a wall around you of law books and court rooms and tennis-playing friends. I hope you are happy now. But, I wanted to say something that I never could say before: I missed my sweet baby for a long time. The little girl you were, the innocent, happy child that would race to sit on my lap.What happened to her? My one question is “do you even remember her, that sweet sunny child, you were?” Because if not, that would be a damn shame. A damn shame.

The Moment A Tear Falls

DISTRESS

DISTRESS (Photo credit: Davi Ozolin)

Blue. Medium Blue, not Light Blue. Medium to Dark Blue. Not Black, Definitely Not Black. That’s what I was, for some time, I wasn’t happy. I started looking for answers to why I was so blue, but I couldn’t move, couldn’t think; I was trapped within myself. There had been anger and tension in my extended family and I looked everywhere to find answers; I was depressed, you don’t need a reason for depression. It is, it just happens, you feel sad, alone and it is also contagious. My husband has been depressed for several months, my rock, my person to lean on, it shook me up, not that I knew it when it was happening. I was searching for something, anything, anywhere but in essence, I had forgotten an important thing. I had forgotten about me.

I wanted to run, hide, have people help me through these feelings that I didn’t like, depression, feeling blue, blah and everything that comes with it. Little things just added to my depression. “I was quite surprised when I dragged myself in to see my therapist and she asked if there was anything I was looking forward to?” I literally looked at her as if SHE was crazy. I had nothing to look forward to, but she could tell that by just glancing at my face.

Now, since the fog has lifted a bit, I can try to look forward to another day on this earth though when you are severely depressed that is not an option. You can’t. Aside from Fibromyalgia, an Auto-Immune disorder and some physical pain I don’t have a disease that is life threatening (well, not yet.) I  should have been thankful for that but you can’t see it that way; It just doesn’t fit into the pattern. You just want to lie still in bed, under the  blankets.

I stopped searching for all things outside my life and one day I felt a cloud gently lift, literally by inches, I pictured as a venetian blind being pulled up slowly and just a bit. I didn’t want to get excited but I noticed it and that itself felt good. Cautiously, I waited until the next day and the next and I was feeling a little better. I had stopped reaching outside and started looking within, when I started to cry, really cry and get angry I thought that it was a good sign. Who said “Depression is anger towards inward?” A bunch of psychiatrists including Freud and in my case, I have to admit, I agree.

If you haven’t been through (even a mini) depression you really can’t relate, I was let in, however, to a world I had never seen and it scared me half to death. My empathy for people with depression is stronger, I had never been depressed before. I saw a part of your pain, a glimpse really and I don’t want to go back.

Venetian blind, detail

Venetian blind, detail (Photo credit: Wikipedia)

all photos used are property of the owners.

Standing at the crossroads (Carry on Tuesday)

Egretta sacra

Egretta sacra (Photo credit: Wikipedia)

The counselors in group say that everyone has a choice. They tell us that every single day. I think they are wrong. The therapists are like old, cranky parrots on repeat play telling us things about how drugs are bad and they can help people with depression or any mental health disorder but I don’t listen that much, I pretend to listen. We sit on a multicolored carpet which is dirty with potato chip crumbs and cigarette butts and empty Diet Coke cans in the corners next to the gray, rubber trash cans.

I sit inside my room, after lunch for “reading and rest” looking at the pale green walls. I come out only for food, meds, eat, group, private therapy or to play solitaire 50. There is one night nurse that I know and she comes on shift at ten pm. She lets me play cards by myself every night for 25 (half of 50) minutes.  Fifty is MY number. The number on my room says it is #3 but it is really #50.  My cards  always add up to fifty.  Nurse Kelly lets me play solitaire because I earned that privilege for my positive behavior. I know.

When I first got here a long time ago, another “inmate” told me I was in the silent mattress room for two days. I had to go in because they said I punched an aide but I didn’t. I’m sure. They must have made that up. I do not remember a lot of things now. I used to have anger “issues” but now when I feel angry I sit in my room, alone. Sometimes I crouch in a corner, words  popping up into my head like popcorn or toast from the toaster. I say stuff out loud, QUIETLY,  like “animals” or “sailboats” or “nuclear weapons suck, but I don’t scream it out loud. I want to but I don’t. I force myself not to. Plus, the medications make my mouth dry and fuzzy so it’s hard to talk. It’s part of my plan. I smile a lot that’s why Nurse Kelly likes me best. I have learned not to tell these things to any of the nurses or doctors or even my friend, Melissa. That’s how smart I have become here. I don’t tell them about the zombies and the power inside me either. That’s my secret.

I am standing at the crosswords of my life, do I let the zombies win or do I win?  I want power.  I hate it when they have the power, sometimes they try to scare me but I know I have the power and it is getting stronger.The voices in my head are getting louder, I put my hands over my ears. I  fold myself into the blanket and rock. The enemy laughs at me, they think they have won, they don’t know anything.  I spit up yellow bile, it lands on the floor. I feel angry but I tell myself ‘NOT YET, NOT YET. Tonight, after dinner and after I play solitaire 50. I have to be extra careful tonight.  For the past three weeks I have asked Nurse Kelly if she could come with me to the bathroom while smiling at her. She used to come with me but after one week she stopped (which I knew that she would) and she says “she trusts me.”

It’s time, the exact time I always have to go to the bathroom and I ask Nurse Kelly if she will come with me to the bathroom. She just smiles and waves her hand and smiles. I have to be extra fast tonight because I am carrying my secret wrapped up in three tissues. I wanted to have fifty tissues but I didn’t need to because 3=50. I whisper to the zombies under my breath.”Not for long motherfuckers.” I want to run to the bathroom but I don’t, I walk normally. I lock the stall. I take the special sharp secret from my pocket that I quickly peel away from the 3/50 tissues. It is shiny, silver, metallic, hard.  I put the secret present to my wrist and I quickly stab it in, over and over again. ” I WIN” I say out loud. I cut up and down my wrists and across them.  I see the blood coming out and I keep slashing until I can’t any more and then I don’t remember anything. Maybe we do all have choices, this was mine. Looking back, maybe I screwed up. I kinda feel bad for my parents. Nurse Kelly found me in the bathroom stall, dead at 10:50 pm.

National Suicide Prevention Lifeline – Suicide Prevention Crisis

www.suicidepreventionlifeline.org/

National Suicide Prevention Lifeline 1-800-273-TALK (8255): Suicide hotline, 24/7 free and confidential, nationwide network of crisis centers.

Should We Take A Moment To Mourn Together?

Mourner. Could be Isis mourning Osiris

Mourner. Could be Isis mourning Osiris (Photo credit: Wikipedia)

Dear Invisible Illness Sufferers:

I’m conflicted. I want to say that we have lost a part of ourselves, a physical and emotional part, do you think it is a good idea to get together in real or computer time to say good-bye to the people we once were? Have we done it ourselves? Or do we just accept and let it go? There is the before Fibromyalgia or Diabetes or CFS, Virus, Autoimmune OR fill in the blank disease________ and after. Think about it, it would be an acknowledgment of our former selves, our loss and our lives now. We mourn people we loved; I am not the same person I was before my father died, I view my life “before he died” and “after.” Maybe we should have a ceremony together for the people we became after our loss, as simple as being silent for a minute at a designated time?

I guess this begs the question: do we ever really accept it 100 percent? We make do, we understand but it’s a way of life that we have lost, forever. I don’t believe that it will ever get better in my lifetime or that there will be a cure. That’s just my opinion. A wonderful approach is given in a book by  Toni Bernhard called “How To Be Sick” which is a Buddhist inspired way of living with your illness. It will teach you things, no other book will teach you.

It has taken me years to truly accept Fibromyalgia, chronic pain and an autoimmune disease called Hashimoto’s Thyroiditis, my activities are now severely limited. Part of my energy used to be used defending myself to people who thought I was out of my mind or a pill popping junkie. Sigh. I can reassure you I am neither of those. Realistically, who would WANT to be like us? Does it sound glamorous to have no energy and to be in pain constantly? It’s not like we take magic pills to make us feel great, there are no pills that take away the pain. In fact, we don’t even remember what pain-free feels like. Of course there’s Fibro Fog but that’s a whole other blog post.

After the imaginary designated time where we mourn our former selves, we give our thanks,  grateful for the life we DO have, for the cyber friends that are in the same situation that UNDERSTAND and for the body that still exists and for the many blessings we hold in our hearts.

Tell me what you think, I’d love to hear from you.

Finally, I Am So “IN” Repost

anxiety

anxiety (Photo credit: FlickrJunkie)

For the first time in my life I’m in fashion and not following a trend that started four years ago. I am cutting edge; I am “IN ” because I get ANXIOUS.  I’m not talking about buying Uggs (I did buy those 4 years after they came out)  but I still wear them year after snowy year because they keep my feet toasty warm. Apparently, talking about anxiety is now fashionable and trendy. I’ve been popular for this newly accepted diagnosis all my life, I just never knew it. I could be President of this club, and CEO if not founder and major stock holder. The stock market is practically riding on my shoulders, okay the world.

There always seems to be a flavor of the month diagnosis, last year it seemed it was Bipolar and in the last few months, the newest and most focused on illness seemed to be Bipolar 2, (I can imagine a Bipolar 3 diagnosis soon). No disease is funny but when you start putting numbers after the diagnosis it feels like an  iPhone upgrade, with each upgrade things are a little bit different but you still need to buy new headphones or a different speaker.

My friend, Jenny the Bloggess always talks about her bouts with panic attacks and how, on the road, to plug her new book people have stopped to offer her Xanax. Last night while watching an HBO show called Newsroom a character had to go outside because of her anxiety and she didn’t have her Xanax with her. Look fellow anxiety sufferers, we’re even on television, HBO no less!

I’ve never been embarrassed or ashamed at the fact that I get anxious at times. I told my children about it when they were old enough to understand,  just as if I was a diabetic that had to take medicine. Some people are anxious, some are not. I would say my anxiety definitely started in my early childhood when I constantly had to be reassured, each night before bed, by my very nurturing father who would answer a list of questions that I had, same questions every night (I have OCD Worrying) I guess back then, in the old days, people didn’t send their kids to a doctor for an evaluation or to a psychiatrist, it was “just one of those things;” I was always “too sensitive or over-sensitive. I suffered with anxiety until I was in my early fifties when I finally got diagnosed and received medicine to help prevent anxiety attacks and medicine if I have an anxiety attack. I have what is commonly known as “Anticipatory Anxiety” and I’m one of many, many people who suffer with this.

There is NOTHING to be ashamed about worrying or being anxious. You worry because you care and you feel scared. You are fearful of bad things happening to you or to your loved ones or scared about planes, or elevators OR like one of my ex-friends, scared about everything, which is tragic. Unfortunately, she was even scared to go to the doctor and scared of taking medicine so her phobias piled up on her every year like a bloody car crash. There is so much help available if you are suffering, but you must consult a specialist.  My life turned for the better when I stopped worrying obsessively. So, we’re now out of the closet (not that I was ever in) we’re human, everyone deals with life in a different way. It can get better, trust me.

Keep your *Xanax or Valium or whatever you take with you but only use it as needed. Sometimes, the thought of having an anxiety med in my handbag is enough to deep breathe the scary thoughts away. Sometimes.

* I am in no way encouraging people to take medicine, without being under a physician’s care.*

*Obviously I am not a doctor and I am not dispensing advice, I’m an anxiety sufferer who wants to help others.

*I am not getting paid for this (I wish).

Calling Myself A Complete Idiot Would Be A Supreme Compliment

Stir Crazy 3

Stir Crazy 3 (Photo credit: The Michael)

A few weeks ago I posted a very disturbing blog post that scared me and some of my friends and readers. It was called “Worried Sick: One Crazy Ass Blog” and people I didn’t even know got worried about me. Days later and a tears shed, it prompted me to write a gushing thank you post and sincere apology.

That said, I now believe I am a stupid and utter asshole, although I can’t say for sure. However, I realized today that I think I did something totally silly and possibly quite dangerous. In my “fibro-haze/know it all “frame of mind, I realized that I had stopped taking one of my Fibromyalgia drugs, Topomax (used also for epilepsy and a variety of other illnesses) cold turkey. What makes it even more insane is that I had checked this out once before and knew to taper it. My excuse? I forgot. Reason? Fibro Fog Forgetfulness. We just can’t win, can we?

I researched it today and found out that yes, stopping the medicine without tapering it can produce some significant and intolerable symptoms including severe anxiety, discomfort AND tingling of the hands and feet etc. I’m just lucky I didn’t end up in the Emergency Room (although that was listed too.) However, I was curled up in the fetal position in bed feeling a bit suicidal.

I won’t ever be that cavalier again. I think what happens with those of us with chronic pain is that we take so many different medications (none that seem to help us at all) that we figure stopping one won’t make a bit of difference. Wrong.

I was totally out of my mind to have not thought it through in my search to lower the amount of pills I was taking. Again, when they say “consult your physician” as much as we may hate to, understandably so, at least we should call our local pharmacist. Besides, at least we know their number by heart.

How I Stay Healthy??????

Considered a father of Western medicine, Hippo...

Image via Wikipedia

Give Us A Break……

There’s a fundamental mistake here: you are assuming I am healthy and I’m not. Along with thousands upon thousands of other patients I have a chronic pain disease and an auto-immune disease (not to mention others: IBS, narrow angled glaucoma, interstitial cystitis, painful and swollen joints, flare ups and….oh, is that too much? Because I could continue and I could also go blind instantly but that’s another post altogether.

First off, I am really not complaining just commenting and venting. “It is what it is” and it could be a lot worse: pain is not life threatening so I am grateful for that. TRULY. However, Fibromyalgia and other chronic pain disorders ARE extremely painful (and no it is NOT in our minds.) That is totally insulting. Also, there is little to relieve the pain, at best, and certainly no cure. Live with it? Not comforting. If this affected more men than women you bet there would be more research and no tiptoeing around about pain medication. The latest information frenzy that has all chronic pain patients up in arms (and my mother who saw a show on TV!) is that doctors and the media now are becoming increasingly hysterical about dispensing pain medication to THOSE OF US WHO ARE IN PAIN.

To me, it’s idiotic. I have a Doctor who writes prescriptions for Vicodin like they are gummy bears, lots of gummy bears, but when I tell him I have taken one and it doesn’t seem to help the pain, he insists it’s the only pain reliever he can dispense. Does that make any sense to you? Because, Vicodin itself is highly addictive and he writes prescriptions for them all the time YET he won’t write a prescription for half the amount for something different, like, I don’t know, Tylenol with Codeine? What am I missing here? A different class of pain killers? I am not swallowing pain killers for a high, I have tried Vicodin (one pill) on two separate occasions when I was in dire pain. It. Did. Not. Work.

I’m beginning to feel like the chronic pain community should an old-fashioned revolution. All the patients talk about it but I don’t think all of us have spoken directly to the doctors about it. I have but it does no good. Do you know why other patients are reluctant to be honest and I don’t blame them? Because we have to deal with the raised eyebrow, and the ‘are you a junkie quizzical smirk.’ I want to find a Doctor that HAS Fibromyalgia and see what they say!!

Do you think if we have addictive personalities we will misuse codeine and not Vicodin? I KNOW I don’t have an addictive personality, believe me I would have had plenty of opportunities to have one but it’s just not something I would do, want to do or will ever do. Shouldn’t doctors be able to differentiate patients from junkies?

Think about the Hippocratic (Hypocritical?) Oath that says: “First, Do No Harm.” You are causing harm refusing to treat illnesses that are incredibly painful. How about a different warning label? USE ONLY WHEN IN DIRE PAIN. That works! I don’t know anyone personally who would abuse it but I am sure there is a percentage of people who would abuse anything. Don’t punish us, for them. I certainly wouldn’t want to take anything every day if I didn’t need it. My doctor had me on two different medications to prevent pain that didn’t work and I ASKED if I could stop them, he hesitated and I then convinced him and stopped. I WANTED to use as little medication as possible. Frustrating.

In terms of exercise I walk slowly to try to get exercise and if I had the extra thousands of dollars I would probably buy a membership for a gym that has an indoor pool so I could swim but that’s money a lot of us don’t have lying around. My special diet? I usually eat healthy meals, chicken,veggies, salad, pasta, red meat a couple of times every month or two. However, my special chronic pain diet, for comfort since there is no pain relief usually involves Cadbury Creme Eggs, Yodels and Egg Salad Sandwiches. Sometimes comfort, even though it is not a pain reliever, might just make you feel a little bit better emotionally since no one is trying to help us physically.

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