Life With Fibromyalgia And Hashimotos Thyroiditis 12.20.2014


I really had no plans to write this but I noticed a few people were reading an update of mine from 2011 on this very topic and I just couldn’t let that happen. Believe me, not much has changed but I thought I owed it to you to at least change the date and update you with my thoughts.Hashimotos Thyroiditis is an autoimmune disease of the thyroid. Many people have this condition in conjunction with other illnesses.

Having Fibro and Hashimoto still sucks. Big time.

No surprise there, right fellow sufferers? My number one complaint is not having any energy and if one more person tries to tell me to exercise more (including my new Rheumatologist) I will want to slap them silly. I should have stayed with my old Rheumatologist,  he loved me best but I just couldn’t go see him in the city anymore. I didn’t have the energy to take

English: Common signs and symptoms of fibromya...

 

trains and buses and taxis and walk up two flights of stairs and down two flights of stairs. It’s not as if I dropped him, he was so sweet and understanding, Fibromyalgia did.

I now see a not so nurturing Rheumatologist in town and her motto is basically “Get over yourself and exercise.” She must know my mother.

I KNOW exercise is good for me, for us, but it sounds better than it is. Fibro Flare, really? I hope you have more discipline than I do because I need tips on how to haul my hurting rear out of my bed and on to the treadmill.

Anyone?

I KNOW it is not good for us but I COULD stay in bed 24/7 because of the exhaustion. Couldn’t you?

I’m on Savella twice a day, I was given a choice between Savella and (Fibro Fog, can’t remember the other one’s name but it is widely used and known to put on weight) so I chose Savella. It helps. Is it a cure, ha ha ha. NO. There is no cure, as we all know.

I’m now considering myself LUCKY that I got these illnesses when I was 50 when I hear stories of young when who get these illnesses in their twenties. I feel for you young ladies, I truly do.

What’s the worst part (parts) of Fibro for me? No memory and no energy!

No memory. None, Nada, Zilch. It scares me to pieces. It really does. I go upstairs to get a sweater and as soon as I go up a short set of stairs I am turning around in one room and then another NOT KNOWING why I came upstairs.

Yes, it freaks me out. Anyone else have this too? I need reassurance.

That, and having no energy except for one or two errands ( if I am lucky) every day or every other day. Buy the way, between hearing loss and forgetting I have young adult children (especially my daughter) who still makes me feel like dog shit when I don’t remember what she told me. “I TOLD you that…” and she may be referring to a year ago or two weeks.

I feel bad about myself as it is, but wow, I feel worse after one of those angry, “how stupid ARE YOU? looks.”

Researchers say they made a discovery about nerve pain, but to tell you the truth, it’s just words on a page. There has been no further development to HELP US. If you have found something, please let me know.

As for now, do the best you can, give each other support, I’m here, lots of Fibro Friendly people are on-line. Some of my best friends started with a now defunct Fibromyalgia group but we have stayed friends, close friends. (There is no image for a group of people in pain and smiling, I tried.)

I wish you all good health, good luck and better things to come in 2015.

With love and empathy,

Always.

 

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

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

     

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

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

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

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

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

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

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

    Mashed Potatoes!!!

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

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

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

     

    My Fibro Fantasy, Rated X

    I admit it, I fantasize, doesn’t everybody? There’s a possibility that tomorrow morning my fantasy could come true but most likely not. I’ve been here before. Several times and it hasn’t worked yet. It probably won’t ever work, it will never change, not in my life time.

    FIBROMYALGIA

    FIBROMYALGIA (Photo credit: *SHESHELL*)

    I have an appointment with a new Rheumatologist that practices close to where I live. The doctor I am using is a wonderful doctor and a compassionate man, I have no complaints except he practices in the big city and it is a pain (literally and figuratively) in the ass to take public transportation to see him.

    I can’t do it anymore, alone. I don’t have the stamina and energy  that I used to have. When did that go?  I used to drive my car to the train, walk up the flight of stairs to buy a ticket, down another flight of stairs to get to the train. After the ride I had to climb another flight of stairs and usually walk or take a taxi to the doctor’s office. It was a very long walk but I could do it. I could do that years ago but no longer. What changed?

    English: The location of the nine paired tende...

    English: The location of the nine paired tender points that comprise the 1990 American College of Rheumatology criteria for fibromyalgia. (Photo credit: Wikipedia)

    I don’t know where or when my energy dissipated, perhaps it atrophied but I don’t have even 10 percent of it anymore.

    Why the fantasy?

    Because in the back of my teeny, tiny brain, somewhere in the bottom, left-handed corner, deep in the middle of the 36th quadrant, 76 degrees counter-clockwise there is a dot of hope that THIS doctor will help me. That SHE will jump up from behind her leather chair and wooden desk and exclaim “Oh NO!! You have been misdiagnosed. You do NOT have Fibromyalgia, you have a rare disease called Tortellini Soupadejour, highly treatable, all you need to do is take one small pill every morning, no side effects.You will be cured in 3-5 days, Congratulations!

    At that point I would burst into tears, hug her and my husband and feel faint with relief.

    That’s the fantasy part.

    I want that so badly that I can taste it. I want my old life back. Before Fibromyalgia. Not this crappy piece of shit. Yes, I appreciate it’s not life-threatening, truly, but to hurt every day and night, to have NO energy is no fun either. I’ve also gotten to the point where I don’t care what other people think; I know what’s true and my Fibro Facebook Friends know.That’s all I care about now.

    All I want to do tonight is cry. No, don’t feel bad for me, that just makes it worse. Besides, if I told you how I really felt, I would be holding you up for an hour. You know that, just acknowledge it and move on. I hate pity parties and if I want pity, believe me, I will give myself the pity party I deserve. I don’t want pity from anyone else, but thanks.

    I want to scream at the world, I want to lash out at nice people who ask me, with hope, how I am feeling? I’ve decided on just saying “fine.” If I was honest it would take an hour and people would get bored and probably wouldn’t believe me anyway. My true friends can see it on my face or hear it in my voice, over the phone even.

    All they need to see is a glimpse of me, a catch in my voice, generally my friends are like me, sensitive, compassionate, at least most of them.

    Unicorn

    Unicorn (Photo credit: scorpiorules58)

    I am NOT expecting any miracle tomorrow, I know everything will be the same. She is just easier to get to, I don’t need my husband to drive me, I can get there on my own. The bloody diagnosis will be the same, I may burst into tears but not because I have a new diagnosis but because I had a speck of hope which was the stupidest thing to have, ever and the worst part? I knew that all along.

     

     

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    Children: The Moon, The Sun And A Fibro Flare Up

    Sigh. Welcome. I know you are here even if I don’t have any interest in wanting you to be here. I know you have arrived in town, I can feel the physical essence of your negative energy from the follicles on top of my aching head to the bottom of my over-extended curled toes. It would be too simple to describe how I feel as “everything hurts” or use my example “it’s like having the flu every single day without the temperature.” People try to look sympathetic while they are trying to figure out if I have lost my mind. No, sorry, we are NOT crazy.  My husband was right, my balance is really off and I should have brought my pink cane that I use, on occasion. Fibromyalgia is no one’s friend.

    Moon

    Moon (Photo credit: Paul Garland)

    Thank goodness we have for best friends and Fibro Friends, we understand each other, we know how we feel. We don’t really need to explain. I don’t have to tell my fellow sufferers how I will feel when I have to spend over 6 hours in a car. Yep, you heard me 6 long hours to get home from visiting our amazing children and that’s with no traffic. It’s realistically more likely 6 and a half to seven hours but that burns like acid on the tip of my coated tongue.

    We traveled to see our adult children at their perspective colleges and I wouldn’t trade that for anything but on the way there we stopped halfway so my pain, Fibromyalgia, would be manageable. I assumed the same thing was planned for going home. It was not. How did this happen? I have no idea except that my husband did the arranging and he probably told me what he booked but with Fibro Fog, confusion and loss of memory, it did not sink in.

    In the end it didn’t even matter, we are now home, we saw our adult children and whatever physical pain I suffered was quadtrupled  every second I was with them. I might make different arrangements next time but I don’t even care. That’s what Love is. Simple, Straightforward, Us, Them, Family.

    Think of me, taking whatever drugs I have, including but not limited to, Benadryl,or  Xanax that might relax my muscles enough to get me through the trip, curled on the back seat cushions, going home.

    I adored seeing my son and daughter, and I would do anything for either of them. I love them so much, so very much that pain and stiffness and being out of sorts for a few days, will help remind me of why we went to visit.

    Sun Rays Dancing…!!!

    Sun Rays Dancing…!!! (Photo credit: Denis Collette…!!!)

    We went to visit the moon and the sun. Two things I cannot live without and two things that I enjoy simply by watching. My grown-up adult kids. They are worth every darn tingle, ache, pain, IBS attack and a host of many more symptoms; so when you hear me complain, please tell me to shut-up and to remind me of how worth it, it really was. Love, family love is, what matters and pain is just a side effect. It will get better, hopefully, in a few days. Just being around them, gave my husband and myself incredible joy. It was worth every single second of this trip and many more. We have GREAT kids, each one a delightful pleasure, we’re lucky to have them in our lives. We appreciate THEM.

    Thank you, kids, for having us, we loved seeing you in your home. It was great for all of us, especially me to show me how much both of you have learned and grown-up. I’m proud of you both. Really proud.

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    An Open Letter To Ellen Degeneres

    English: Ellen DeGeneres in 2009.

    English: Ellen DeGeneres in 2009. (Photo credit: Wikipedia)

    Dear Ellen, I hope you don’t mind me addressing this to you, I just need someone to listen, someone who cares about other people. I thought you were the right person even though I’m sure you will NEVER see it. That’s okay. With the exception of a few best friends I’ve learned the hard way that other people are too busy in their own lives to care.

    I DON’T WANT ANYTHING FROM YOU.

    I guess I’m trying to think and talk out loud here. I’m lost, and have no idea what happened to me, I have no idea who I am either though I used to know so clearly.

    Have I just become a mountain of symptoms trying to blend themselves together in a jig saw puzzle where no piece fits? I’ve made changes, I stay away from negative people, I try to be as kind as possible and pay it forward when I can but still trouble follows me like a black cloud.

    Believe me, I am NOT asking for pity. I don’t want anyone’s pity, if I want pity I give it to myself, underneath my three layers of blankets, with the door shut tight, my dog lying next to me on my bed. I don’t want pep talks either, encouraging me that it “is just a phase.” This phase is my life and I have accepted it, I just don’t understand it.  When I try to fight against the “down” period, people tell me not to do that and to be positive. Everything is a mixed message.

    You have the natural talent to bring joy to others just by being yourself, I love that.

    Right now, I am a huge collection of symptoms that I don’t mind sharing, I’m 57, there are people who are 97 that are healthier than I am. From head to toe: narrow angled glaucoma (eyes) many, MANY painful treatments in my eyes to try to correct that, but its a life long condition, hearing loss (had stapedectomy-operation for ears) the dreaded Eppiglottitis, I don’t wish on my worst enemy, I shiver at the thought, (open, gaping wounds below the throat,) horrific TMJ, shooting pains from my jaw/ear to my brain causing me to scream with agony caused by any random thing and some other facial myalgia the doctors threw at me) which I don’t even count. I have IBS, Fibromyalgia, Fatigue, No energy, Chronic muscle and joint pain, Fibro Fog (not remembering something someone said a minute ago.) General Anxiety Disorder, Hashimoto’s Thyroiditis (an auto immune disease of the thyroid) foot pain, wait, the most recent one and most deadly,  Kidney Failure, Stage 3? (No one ever told me about Stage one or two) I think I’ll stop here.

    Now for the social things, I can’t work because of the above illnesses, my husband was laid off for the second time and still is not working. We have two fabulous children who are attending two different state universities and a dog (our second) I rescued from a shelter.

    I want you to know that we ARE thankful for our blessings, we truly are. Writing this down makes me realize that even more.Thank you for listening, sometimes it is good to write it down and look at it on paper.

    But, am I jinxed? Is this what they call “going through a rough patch?” Whenever I feel I’ve reached bottom something else happens. Do you only know where the bottom is when you finally start climbing up slowly? Isn’t it possible to stay down here forever?

    I guess I just have to accept what is going on now, breathe slowly in and out and believe that something good will happen. Someday.

    Please don’t “like” this post. I don’t.

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    Fibro Girl, Grey’s Anatomy And Me

    Grey's Anatomy (season 1)

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

    When I think of “Fibro Girl” I imagine a small, spunky superhero with brown hair and round black glasses and a red cape that has a big bold black F on it. I don’t know why I think of her that way but it amuses me. Maybe because it’s such a juxtaposition between her life and mine. She is trying to fight Fibromyalgia with her strength. I have NO strength. When I was FINALLY diagnosed with Fibromyalgia, seven years ago, my strength was taken away.

    Our lives with this illness are question marks. It is hard for us to plan ahead. In fact for me, it’s impossible. For people who DON’T have FIBROMYALGIA OR DOUBTERS (seriously? still?)  I am physically unable to commit to a date in the future without the caveat “depends on how I’m feeling.”  People who cannot understand that are not true friends. We didn’t ask for this, we wish we didn’t have it. Believe us.

    My current experience with Fibromyalgia is that I am able to do one errand per day, MAYBE two. If I push my limit I’m wiped out and pay for it later with exhaustion/ pain. At the moment I am not suffering as much physical pain as I had in the past. (see past Fibromyalgia posts) There’s always some pain but I have learned to accept and manage that pain because of a great doctor and the right combination of Fibro drugs. Now, doctors are worried about a new “balance issue” which has nothing to do with Fibromyalgia.  More tests, a pink cane….I can’t walk a straight line, two perfect CAT scans. Can we stop now? No.

    Fibromyalgia takes control over us. I’m embarrassed to say that I never thought about it that way. Amazing how our lives change so quickly. If stress is indeed a factor, I’m in deep trouble. My husband got laid off 2 days ago. I can’t work even though I want to and we need the money but it’s not possible. It doesn’t seem right to punish us for something we physically cannot do. Not right at all.

    We don’t live in a perfect world, although I really do know people who live a charmed life in every aspect of their lives. Lucky them, maybe they have dark secrets but I doubt it. All I want is a break in having to struggle every single day with some new illness or symptom. The umbrella of Fibromyalagia has so many illnesses underneath it I go to the doctor(s) way too much.

    Right now, with the weather is getting colder. I always feel worse when it is cold outside. Then, a good time for me is staying in bed with my dog lying next to me, watching Grey’s Anatomy, Parenthood or The Voice. The television has become my life line. That and this computer connecting me to friends with Fibro and without. We do the best we can with what we have. Minute by minute, day by day. We’re in it together, holding hands, on-line and off.

    Figuring It Out. ALONE.

    Dark Moon Tree on Night Sky / Magic Fantasy Space

    Dark Moon Tree on Night Sky / Magic Fantasy Space (Photo credit: epSos.de)

    Part 2: Figuring it Out: By Myself

    Why didn’t I just sit down and listen to myself? Really listen and take my advice and go away for a few days to have some alone time? I didn’t have a second this summer when there wasn’t someone around me. Without a doubt, the high point of my summer was spending time with my daughter in Fort Lauderdale,  Florida for five nights, just the two of us. That was amazing and I would do it again, in a hot second, because not only did I want to go but my 18-year-old daughter wanted to come with me. For the first time.

    I need my space, have always needed my space so I can breathe. Like a fish needs water, that is how essential my alone time is to me. That’s why I’ve been depressed, I knew it was something simple, something tangible but it was far beyond my reach at the time to understand. Yet, it was right in front of my face. It was just so black, I couldn’t see it.

    During this summer, hostile weather and all, I was housebound with Fibromyalgia and Depression, not a win-win combination. For the first time in six weeks I feel so much better, I’m smiling at the computer and a smile feels better than a sack full of jewels. I’ve always needed my alone time and I had none. Not one minute. There was no balance in my Libra life, no balance at all.

    I drove myself crazy with questions and speculation deepening my depression because I couldn’t figure out why the cause of my depression. I have never been a depressed person. Anxious yes, depressed, no. I had researched meditation, chakra, astrological practices etc. and what I really needed to do was sit still and listen to myself like I did tonight. Finally. I can breathe again, slowly.  I am yawning with relief and self-satisfaction. Next time, before I run myself around in circles I should just listen to my gut feelings and act on it and not back away because it feels too hard to do or too expensive. It’s worth every single penny and then some. I feel clean and light.

    I couldn’t sleep when I wanted to sleep the most. I couldn’t concentrate because I forgot everything the very same second : the cause: Fibro fog (Fibromyalgia Fog: short-term memory loss. I had no appetite and could only eat the smallest of portions. My mind felt cluttered but if you asked me with what I couldn’t tell you one single thing. I felt like I couldn’t breathe. Nothing felt right, nothing was right, I simply was not myself and I was out of balance. I tried to find my center but tried to find it on the outside and not on the inside where it belonged.

    It took some time but when I finally figured out WHAT was making me depressed and the feelings beyond that, it was a gift I welcomed. I felt so disheartened not being able to figure it out by myself because that is one of my strengths and yet it was right in front of me. I just couldn’t see it in the dark.

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    Decluttering My Life

    Clutter

    Clutter (Photo credit: marlana)

    First, I thought I might be a hoarder, and believe me I am in no way making a joke out of this. I read that hoarding starts with keeping sentimental things. If that’s how it starts then I am in big, big trouble. If I look around my house, though, the clutter is really just in my bedroom and my (once) big walk-in  closet. You can’t walk into it anymore. I ‘m scared, truly scared, as I look around my bedroom filled with Diet Snapple bottles and magazines, candles, plates, lavender moisturizing creams, piles of paper… I need to breathe, I  need to breathe.  Other rooms in the house “look” fine, for example: the living room but my room and my closet are humiliating and filled with junk. Boxes and boxes, laundry baskets and laundry baskets filled with everything but laundry.

    If I declutter my house, will my head and heart be clearer too?

    Lately, I have misplaced things too. My keys, my sunglasses, my plane ticket,  lipstick, my book, my jacket. Also, recently I have been very stressed out, emotionally. This is MORE than my nemesis Fibro Fog from Fibromyalagia. I misplace one thing after another, panicking and starting the cycle over again. There has to be a connection here I’m trying to slow myself down, so far it isn’t working. It’s not amusing when I “lose” something, my daughter helps me find it, ( I always find things,) I misplace things rapidly. I need to slow down.

    I can’t deal with anything when I am feeling so overwhelmed. I need to start cleaning and organizing now, actually yesterday. I feel the stress in my stomach. I always feel stress first in my stomach, is that just me or does it happen to everyone? The tender points in my neck and shoulders are all raw, tap me lightly on a tender point and I will let out a blood-curdling scream. Last week the edge of my husband’s sleeve brushed against me and my scream was so awful and so loud that it scared both of us. Damn disease.

    Next morning: I can breathe a little easier today, I really did work myself into a panic but once I started organizing my room and recycling a lot of papers and magazines I felt better. There’s still a lot on my mind, I don’t feel settled yet, but even if I make a tiny bit of progress it will make me fell more in control. Of everything. I will need to work things out, in my head and in my heart. I will do all that while I am cleaning, because cleaning will give me more control, I just feel that. I can’t be wrong. Can I?

    PFAM- The Stress of Having a Chronic Illness- Fibromyalgia

    Fibromyalgia Awareness

    Fibromyalgia Awareness (Photo credit: Kindreds Page)

    When you have Fibromyalgia stress is part of your life, it’s your face staring back at you next to the definition of “stress” in the dictionary. Wait. What? What were we talking about? I don’t remember, it couldn’t have been too important. It doesn’t matter. I had a good morning, the pain in my arms only woke me up twice during the night and it wasn’t bad at all getting out of bed if you don’t include the dizziness that happened when I tried to get up.  I actually was able to go out and do an errand, even two. My energy level was okay for an hour and a half to two hours! Then, the boat that is my life, sank like the Titanic. There were no survivors. That always happens. I should get used to it but I can’t. Maybe it’s Fibro Fog or pure denial but when I crash in the afternoon, every afternoon, I crumple like a rag doll and need to lie down. I can barely make it up the stairs on my own, the stair rail helps me up as I plod along slowly. It happens every single day. Maybe Fibro Fog and forgetting are better than acknowledging my sad, interrupted life.

    My stomach aches, It’s probably IBS, or irritable bowel syndrome as we Fibro patients know, we get pain THERE too, it’s a classic symptom. Stress only makes it worse, where did it come from? We are not exactly sure, some say it’s from Fibromyalglia, some say it’s a gastrointerology disease, other say stress. No matter what, we can’t win.We can run to the bathroom with stabbing pain or basically not go at all. Pain all around. You can’t help it, there is nothing you can do but wait it out. Just an added bonus of Fibromyalgia, just one more question mark that will never be answered. It limits where we can go and when, which in itself is stressful. We have to plan or not plan at the last moment. Friends who understand call in the morning and ask “are we still on?” or “let’s see how you feel in the morning.” For every friend like that, there are two friends plus family members thinking or saying, “you should just exercise/eat gluten free/lose weight/gain weight/go holistic/ try acupuncture, get a massage etc. They are so strong in their feelings and I know it is out of love but I have stopped trying to defend myself and just let them talk as much as they want. Since it’s the 100th time, I don’t fight anymore, now I just pretend to listen.

    This insidious illness has not only interrupted our lives, the lives we once had, but for me, divided it into two. Before Fibromyalgia and After. We mourn our old selves to a point, some people still hope for a cure, but I don’t. I need to focus on my new reality, the pills, the pain, the realization that I cannot do many things that I was able to do in the past. That sometimes I feel like half a mother, half a wife, that I have the energy of a cockroach, let me correct that, the energy of a nearly dead cockroach because those things can be feisty.

    I am not feisty anymore but I once was. Those were the early days when I could describe myself, without hesitation, as HAPPY but also young. I remember saying that, though conjuring up the feeling now is so much harder. Luckily, when I had my children I did not have Fibromyalgia but they don’t remember all the running around, playing, swinging and rough housing on the floor we did because they were so young. That to me, is heart breaking. Ask them now, as young adults and I’m sure they will remember “Mommy is in bed, she doesn’t feel well” or “Mommy is sleeping.” Ask any mother who has Fibromyalgia if that’s not the tipping point for her. It was for me.You want to help your children until you become old. Fibromyalgia makes you old, makes you feel old and useless a good deal of the time. The stress of life continues and it waits for no one especially us. There’s not only physical pain with those of us with Fibro but emotional pain too. We are not who we used to be. Does anyone ever think of that?  We are half of who we were. People with Fibromyalgia don’t get a “do-over” we don’t even get a chance.

    Fibromyalgia 2013 – UPDATE

    #Fibro - Awareness Day

    #Fibro – Awareness Day (Photo credit: sand625)

    I’m being a bad patient. Yes, I’m confessing. I have a doctor’s appointment with a new rheumy (as us Fibro patients like to call them) a new rheumatologist in about a week and I think I am going to postpone it. Again. My old rheumatologist who I do indeed love, takes about three hours to get there and back, usually more, and this one is only twenty minutes away, I’m getting lazy. However, this is the height of flu season and I really do not want to expose myself to the “flu factory” that is my doctor’s office. It is not just one office, it’s two buildings of sick people for every specialty in the world. It’s a factory for any illness you can think of. In addition to having Fibromyalgia, I also have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis. Just glance at me and I will catch it.

    This is a tough choice. Had I been feeling extremely poorly now with Fibro I would surely go for the appointment but the fact is I’m feeling pretty good. (I know, don’t jinx it) It’s the first time in many years that I am NOT complaining about aches, pains, moving or walking. SHUT UP! my friends will say but no, I cannot. Of course, I still have Fibro Fog to the extreme (really scary) and I am on enough medication to kill a horse but this last combination of drugs apparently is doing a little something-something. You guys understand…

    Sure, I suffer from the tender points, but I don’t even count them, they are as natural to me as getting up in the middle of the night to pee. I accept it. And yes, I have all the other symptoms of Fibromyalgia: IBS, tingling, headaches, “yada yada yada*” but overall I feel better. I’m not asking for fabulous, I’m just satisfied with better. Better to a Fibromyalgia patient is like a miracle, BUT it is a miracle for however long it lasts. I think a lot of it has to do with my endorphins being raised quite a lot. Wish I could say it was from exercise but let’s not get too crazy here. It’s the result of medication, and no, not-self medication.

    Right now, I’m just appreciating feeling a little different, in a positive way. I want my Fibro friends, and the newbie Fibrosmyalgia patients to know that it is, indeed possible. Don’t give up hope, maybe one day you will feel better too with the right combination of medicine. Keep fighting. I know there is no cure but you need to trust your doctor, or team of doctors and they need to believe in YOU.

    For now, until it changes, I am happy, fine, content. Do I think it will stay like this? Probably not. Do I hope so, definitely: yes. But, as we all know with Fibro, we have absolutely no control over anything, which really is the hardest part of all.

    Let’s wish each other a whole lot of luck.

    If you have questions for me, especially those who are new to Fibromyalgia, feel free to ask, I’m happy to help.

    *yada, yada, yada from Seinfeld