Looking For Dr. Lisa Sanders, Dr. House, The Mayo Clinic?

Dear Dr. Lisa Sanders, Dr. House, New York Times, The Mayo Clinic or any doctor, active or retired that wants to save a life and help a really nice, frustrated, sick woman.  If you are looking for just the money, trust me, you are not the doctor, if you are looking to make someone who is desperate, happier, even if there is no answer, you’re my person. My medical person.  (if you watch Gray’s Anatomy you would understand this, if not ask someone who does.)

I am desperately seeking a miracle, yes, a doctor or a team of doctors who will put all my different symptoms together (for the last eight years) and try, just try, to figure out the root cause. Believe, I have an idea but not the credentials. I don’t have the knowledge or the education, just an inner voice. That leaves me with nothing. If there is nothing that comes out of it, I UNDERSTAND but I will know, someone really tried.

I have an internist who gives me 7-8 minutes and two specialists who are absolutely amazing but they send me to different specialists and it is too much for me to handle and take in. You understand, right?

The Mayo Clinic in Rochester.

The Mayo Clinic in Rochester. (Photo credit: Wikipedia)

 

 

 

 

 

 

I know the Mayo Clinic would take me! I have about six doctors who would gratefully write a letter to get me inside the Mayo Clinic and off their backs. Do they have the equivalent of financial aid?  I probably would be the most interesting and mystifying patient they have seen in a long time. Trust me, I’m not bragging. Living in my body and brain is pure hell.

 

I asked, okay, begged, two of my nicest specialists today, my cardiologist and my nephrologist if they could assign me to a medical student to take on my case, you know the way they charmingly do in Gray’s Anatomy. They both shook their head within a second and laughed. Sure, they would like to help but they can’t. Of course if I had A LOT of money (which I don’t at all) I could hire a private concierge doctor and maybe that would help me, yet break us financially and there’s no guarantee. Honestly, I never heard the word “concierge doctor” in my life. As for random medical students to assign them to my case alone, they laughed out loud. Gray’s Anatomy is truly a fictional fantasy. I want to be someone’s person. (Ask a friend.)

 

I’ve thought of the Mayo Clinic, Johns Hopkins and I need to do more research on that this week. At today’s nephrologist’s appointment he literally ( a 58-year-old) referred me to a pediatrician. Yes, it is not a typo. Supposedly, there a doctor who specializes in low blood pressure and syncope who sees children and on occasion, if begged, a woman of thirty, helps. My doctor is going to talk to him and plead with him to see me. P.S. he said no  but referred me to a pediatric neurologist,  (what?)

DO YOU SEE WHY I NEED HELP?

He also suggested a fat biopsy. A FAT BIOPSY? What on earth is that? I googled it and it really made no sense to me plus it’s always a bad idea when I research something, a very bad idea. He also recommended Hormone Replacement Therapy. My jaw dropped. He said what?

Yep, the dreaded  (my own personal view) of adding more medicine to my body?

I also have Eppiglottitis, and have had this three times already. Figure that one out. I have posted many articles about it, it’s deathly pain, its sword-like plunge  beneath your throat. Many readers have read this article and many ask me questions. I know there is a vaccine to prevent this for infants, I’ve asked several doctors about giving it to me. There answer is a confused look on their faces and they say “we can’t.” Why, I pursue, “because it’s for children.” Take a chance, do some research, you can’t even try?? Have you ever had that horrific pain? I also fall down from low blood pressure (we think) and randomly shake.

I have more symptoms but I don’t want to scare you away!

Does anyone have any connections? I’m realistic, not stupid. Please forward to anyone you may know at The New York Times or Dr. Lisa Sanders or The Mayo Clinic.

Please.

Thank you in advance.

 

 

 

 

Advertisements

Crazy Looks Like Me, Crazy Looks Like You

It’s raining sheets, like unfolded plastic wrap falling from the sky. The clouds overhead are not dismally gray or black, nor are they white and cheerful, they are just the background for the rain, a neutral color of uncertainty.
.
My younger sister, Shelly, sat at the kitchen table in the dining room, alone, her head down, her eyes unfocused. She had a tiny silver spoon in her hand and she was stirring her coffee, over and over again. I don’t think she even realized she was still doing it. I said “Good Morning” to her but she never answered.” She wouldn’t speak to any of us.

 

Shelly was wearing her same  blue striped pajama bottoms, the dingy white tee-shirt and a pair of thick, pink socks. She hadn’t brushed her hair, it seemed, for weeks. She wanted to just stay in bed and be alone, the only thing she would say was “I’m not crazy, do you think I’m crazy, because I’m not.” I bit my lip.

I wasn’t trying to be mean, honestly, but I had begged her to see a therapist and our parents forced to talk to someone and she went with them once, kicking and screaming the entire time. She never even went inside.

 

 

I didn’t know what to do, but I did know that this was not helping her. Staying in bed all day, getting up only for coffee or her one meal, a bologna and cheese sandwich on white bread with mayonnaise  that our mom would leave her in the fridge. Shelly told all of us “it was none of our business” but of course it was our business, we loved her and hated seeing her fall apart, a little more each day.

I didn’t know how long I could take looking at the shell that was my little sister, curled up in bed with the light off and no life coming from that room. She slept all the time. Once, I started playing music in my room, music I loved and thought she loved too. I thought she might enjoy it but she screamed and moaned for me to turn it off in such a violent, out of control way, that my parents immediately came and scolded me, they turned my music off. It was upsetting Shelly.

She needed help, she desperately needed help, she was getting worse and my parents and I couldn’t handle her anymore. Now, she was not sleeping at all and roaming our apartment at all hours demanding attention. I had a full-time job as a Customer Service Representative and I was already in trouble for missing too many “sick” days. Our parents were older and not in good physical shape and our little brother, Josh, was just eight, a mere baby himself and, of course, troubled and confused.

For a week we whispered among ourselves to arrange for an intervention, we knew something had to be done.  Time moved quickly, it was 4 pm on Tuesday and the day had come. I sat in the corner, biting my nails. I wanted my sister to get better but I did not want to be part of the intervention. My parents made me so II also felt like an accomplice and hated that feeling. I hated being in the middle of everyone.

We were all assembled in the living room, Shelly was in her room, sleeping. The people from Edgehill Hospital were waiting right out side the door. They decided that our dad should approach Shelly gently by first calling her name and asking her to come out of her room. She refused.”I’m tired” she murmured.”Maybe later.” After several more attempts and being exasperated, our dad asked her to come out again but I could hear the strain in his voice… Finally, in a fit of rage, he broke the door down, and started yelling at her. He screamed for a couple of minutes, his patience worn and suddenly stopped to find Shelly on the bed, still, not breathing, and cold. He called 911 immediately but we knew she was gone.

She died from an overdose of pills that she had accumulated for many years. We found two empty bottles of alcohol on the floor next to her bed. The note that she scribbled with a purple pen said this: ” I hate my life, it’s all black an” that was the end. She couldn’t even finish the sentence about her young life.

No one could speak after the initial gasp of horror, we each sat in our own corner, after the ambulance came and pronounced her dead. No one  spoke to each another, harboring our own guilt, our own excuse, our own irresponsible part we had in Shelly’s life.

All of us thought we killed her. I know I did, for sure.

 

 

 

Help Needed: For Fibro And Chronic Pain Sufferers 2012

icy storm

icy storm (Photo credit: Vilseskogen)

I’ve often thought about placing a classified ad to get responses from people about what are the best climates for someone who has Fibromyalgia and Chronic Pain. I live in the Northeast so I know that the freezing cold weather just knocks me out, like a painful gust of wind on a fragile old lady. I feel like that old lady at times, more often than not, I need to hold on to something or someone because when the weather is terribly cold, I am in pain. I will not live in this cold country for the rest of my life, I don’t want to do that but I have said that for years.

It started to snow in October which seems crazy and the winters are longer. We need to stay here until my little one (18 years old) finishes college. Where would we go after that? I have no idea; suggestions are welcome, the only requirement is WARMTH. Moving is a daunting task, especially with an elderly mother, my sister and her family near-by and two children here. Moving FOR people is NOT a good idea, but it is a consideration. The only compromise I can think of is to be “snow birds” but you must need a lot of money for that.

WANTED: 2 BR APT. in Warm climate

Needed: Warmth (Desparately)

Needed: Near Sand and Water

Highly Preferred: Low Humidity

Close to teaching Hospital

Close to Public Transportation/Airport

Do you think that’s asking too much? That’s what I am going for, in my fantasy. My bones ache in the cold weather, I shudder with pain like an injured yellow bird flapping her broken wing. I want to be close to nature, to take walks all year round and to give myself a break. Just need money, my husband to agree, and the courage to move away from family. That’s the toughest one of all.

Simple Pleasures

English: Fireplace. For more translations SEE ...

English: Fireplace. For more translations SEE BELOW (Photo credit: Wikipedia)

I like walking on the beach and collecting seashells. I love watching the ocean, any time of year. Sitting in front of a fireplace watching the orange flames flicker and dance in front of me; I sit so close that I feel the warmth of the fire on my cheeks, safe enough not to get burned. Familiar music playing that I sing along to, I used to burn candles but I don’t do that as much anymore. It used to be comforting and pretty but I’ve outgrown that. My dad used to buy me a candle for my birthday every year. Since he died eleven years ago, my mom and my sister try to do that, it’s so sweet but not the same. I love their intentions though, I appreciate it.

I’m looking forward to the special sweetness of a pit-free clementine, the happy, simple snack that I can just grab and peel. That is one easy part of the winter that I like. The winters are long here, way too long for me so I try to think of specific things that make it better like my home-made pea soup with smoked ham pieces and plenty of carrots so that it has a smoky-sweet taste. Or my home-made chicken soup that comforts us when we have colds and feel like eating nothing else. Our son used to crumble up Saltines by the handful and throw them into the soup so it was thick, the consistency of gruel but tasty. In the winter, I drink hot chocolate, in a steaming mug, sometimes with marshmallows for an extra treat and I bake my famous banana bread, with chocolate chips and raisins. I bake it for three out of the four cousins; my daughter will not try it.

I like having a flashlight right beside my bed every night and a tissue clutched in my hand. On my bookcase, along with many, many books I have photographs of my son, my daughter, my dog Lexi, and our deceased dog, Callie. There is our informal “engagement” picture of my husband and myself grinning so happily at the world. There is a basket of seashells that I collected from Florida and Rhode Island that I play with every now and again. I look at them all the time. Our dog, Lexi, lies on my bed, across my legs and sighs deeply and happily.

I have an anxiety disorder and recently I was so lucky to find a Psychiatrist who is lovely and gracious and someone who will not just dole out anxiety medications but will talk and listen. I told her today I picture her and her assistant as Glenda the good witch, all pink tulle and smiling eyes. I do not take this lightly having seen a couple of really creepy people. This is something I hold special in my heart, that there are still a few good people on earth, that do good things, whether you have the money or not. They will work with you to figure it out, there ARE a few people to believe in. I am grateful for you; thank you for helping me believe that there are good people left in the world. I am grateful and blessed.

Dedicated to M.E. and B.

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

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.

Carry On Tuesday – “Every Now And Then”

A Hill-Rom hospital bed

A Hill-Rom hospital bed (Photo credit: Wikipedia)

I live in a world of darkness; light splinters in through occasional cracks in the white, plastic blinds. I would rather be in the darkness than in the light. When there is a hint of brightness I hide under my covers and lie still, squeeze my eyes tight. I have felt this way for a long time. Every now and then I try to picture myself in the past buying red tulips and iced coffee but it has been so long ago I can barely remember what it felt like. I now lie in a hospital bed, the IV dripping fluids into my wobbly bluish vein, pain medication scheduled every four hours. There is no silence in a hospital ward, it’s always too noisy; I can’t even hear myself think, maybe they do this on purpose for distraction.

When visitors come I put on pale, pink lipstick and try to sit up to give the image of energy. I attempt to smile and make conversation but really, what is there to talk about? We all know I am dying but nobody wants to talk about that, well, except for me. I bring up the topic from time to time but my friends squirm and change the subject. Since it is not happening to them I don’t understand why they won’t have a conversation with me about it, for goodness sake. Death is my future, it’s all of our futures, some sooner than later. It makes them feel uncomfortable to mention the word, I want to yell at them “man up, I’m the one who is dying here, not you!! ” but I don’t have the energy.

When my father died, many years ago, I had one friend who just let me cry, her name was Margo. I didn’t have to say anything,  I just needed to be able to be with someone I trusted, her arm around my shoulders and I could cry. No one else, even family, made me feel that safe with the exception of my dog. She would jump on the bed and I would cry and she would kiss my face and lick my tears. She was one of the most empathetic dogs I’ve ever known, her nickname was Buddha Dog.

I wear red “cowboy” bandanas in my hair, or what’s left of my hair, I look like a cross between a bad-ass motorcycle chick and a kewpie doll, that’s one hell of a combination but it amuses me. I’m not supposed to admit this but I really don’t like when my children come to see me, I’d rather they didn’t but my husband disagrees and lectures me on this. Why should they have to see me like this, thin and disintegrating and in pain? I would rather them remember me as I was, happily eating mango sorbet, laughing at my own jokes. I would scratch as many cars as possible and not be mad when they teased me about what a horrible driver I was if I could turn the clock back but I can’t. I can’t do a thing except lie here and wait; I am powerless.

Sometimes I ask for foods from my childhood, Wonder bread sandwiches with the crusts cut off with butter and Kraft American cheese or creamy Skippy peanut butter with honey and sliced bananas. These things are soft and don’t hurt the sores in my mouth as much as some of the other foods they try to make me eat. Even if I can’t eat them, I try to touch them and smell them and it makes people feel good to bring something. I’ve learned that. I will ask for simple things so they will feel better.

I don’t have much time left but time enough to know that this life is a short one. Enjoy, not each day, but each part of every day no matter how shitty it is. You are alive and you still have your future. I do not. Hold on to what you have, it is just a fleeting moment or two. Really, hold on to what you have while you can.

Bust An Infertility Myth “You Have Really Old Eggs…”

Venus

Image by Daquella manera via Flickr

Twenty years ago my husband and I battled infertility for over two and a half years. Infertility back then was shameful, shrouded in secrecy. Never have I fought for something so hard in my life, not before then and not after. This had been my dream since I was five years old, I was not going to give up easily.

I woke up at 5am, every day, to have blood drawn and an ultra-sound. Often, I was there again at night. We had tried IUI twice with no success. I was on a lot of medication and nightly shots that my husband administered into my sore buttocks. It is a draining process both physically and emotionally and it was not working. Eventually, I was told it was time to try IVF and we did.

The day for the IVF preparation was here and I was ready. I went in for one last ultrasound  and an unfriendly nurse started shaking her head, clucking and frowning. “Bad news” she said:  “you started ovulating on your own, the IVF is canceled, get dressed.”

She stopped me in the reception area as I tried to leave. In front of other patients she said loudly “You have really old eggs, at your age they just shrivel up.”  I was 33, not very young but definitely not old. I was crushed and left the clinic weeping. It didn’t even occur to me how unprofessional and rude the nurse was, I was too upset and depressed. The next morning I was scheduled to have an IUI .” My husband sat with me and stroked my hair.  We both needed a break and decided to have a date thinking only about the two of us. We went out to a small Italian restaurant, came home and did what we had not done in a long time, we made love.

I was scheduled to go in for a blood test the next week and I didn’t even tell my husband.  After my blood test I got the usual “call us tomorrow for the results.” I knew that routine by heart but I felt calm, peaceful. Later that day, I got a call from a nice nurse who asked me how my day was going. I said “fine.” She said “well, I’m calling to tell you that your day is going to get a whole lot better! Congratulations, you’re pregnant!” I remember saying “no way.” She replied with “way” and had to convince me that it was  true. I shut the door to my office, sank down to my knees and wept with gratitude. Later, I opened the door and in a dream-like state walked out slowly, one hand already cradling my stomach.

After all we went through I didn’t want to tell my husband on the phone. I knew he was supposed to play racquetball after work, across the street from my office so I surprised him there. I asked our friend if I could borrow my husband for a few minutes and he smiled and left us alone. I leaned against my husband and whispered in his ear: “I love you very much and we’re going to have a baby, I’m pregnant.”  He stared at me blankly for a few seconds in shock. “I’m pregnant” I repeated and his warm brown eyes bulged out of his head. “Are you sure?” he asked softly and I said “yes” beaming.  He was so excited that he canceled the game  after ten minutes and arrived home shortly after I did. Apparently, my decrepit old eggs were still viable. We had a baby boy nine months later.

Addendum:

On our son’s first birthday I got out the number for the clinic. I tried to see the date of my last period but I had forgotten to keep track. I felt peaceful, calm and happy. “Oh my G-d” I whispered to my son, “I know this feeling.” I went out and bought a pregnancy test and it was positive. Our daughter arrived without any medical intervention, nine months later.  My eggs rocked.

http://www.resolve.org/infertility101  National Infertility Awareness Weekhttp://www.resolve.org/takecharge.*A wonderful organization to raise awareness for infertility with compassion.

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.

Powered by Plinky

The Emotional And Physical A, B, C’s of Fibromyalgia

Fibromyalgia Awareness

Fibromyalgia or any other illness combines physical symptoms AND emotional ones. This is a blog post that is not original. I just borrowed it from friends because that’s what friends are for! Here are mine:

A- Anxious, Aches, Achy, Anxiety

B- Bloated, Blue

C-Cramps in feet, legs, hands…etc, CURE??????? (not).

D-Depressed at times, Denial, Disapointment to others?

E-Embarrassed, (no) energy

F- Fatigue, Fibro Fog, Forgetful, Fat, FRUSTRATED, Fearful

G-Grateful it’s not life threatening

H-Hands that are swollen and ache, Hurt

I-Incomplete

J-Joint pain, joyous for a good (day, hour, minute)

K- klutz, I trip, I fall and I am uncoordinated

L-Lame, Limitations

M-Medicine, moody at times

N-Neuropathy

O-Oh what a pain in the ass this really is for all of us.

P- Pissed off, Pain

Q- (no clue or rather, qlue)

R-Realistic

S-Sad, Suffering, Savella

T- Tired

U-Unsure

V- Very tired, very frustrated, very much want carrot cake

W-Worn out, weary

X- Xanax for anxiety (the same answer everyone else gave!!!)

Y- Y? because I love you……

Z-zzzzzz’s for sleeping a lot