We Are Warriors, Not By Choice INVISIBLE ILLNESS WEEK

I’m not going to lie. If I had a choice of having Fibromyalgia, the umbrella tree illness and all its branches and not having it, I would drop it in a hot fire-searing second. But, like any illness, we don’t have a choice. We have it and the more we fight it the less happy we are.

I do think it takes a long time to finally accept this chronic illness, beyond anger and months of crying, not to mention countless clueless doctors and the raised eyebrows of many who think we are all nuts. I don’t know about you but I want to slap that question mark look right off their smug foreheads.

One of my doctor’s, a well-known person, left me sobbing in her exam room, after diagnosing me with a thyroid condition. I was already on synthroid and still in agony when she clicked her expensive heels, saying “there’s nothing I can do for you” and marched out. She hadn’t diagnosed Fibromyalgia, she didn’t have a clue.  This was eight years ago and the image still is clear in my head.

We are warriors, all of us, invisible illness warriors. You probably have heard of us but you may not know who we are and how we suffer. We don’t offer up the information, and if you know we have a chronic illness you ask in a perfunctory manner only. Our answer to all of you when you casually ask ” how are you?” is “fine.” We always say “fine” at least I do. Not many people really want to know the details and if you think about it you will agree. That’s okay, it takes too long to answer, doesn’t it? “Fine” works for both of us.

If you REALLY want to know there are always  follow-up questions or even a cup of coffee or lunch. We tend to be independent, close to other people who have the same ailment, the ones who know what chronic pain feels like. Some of my closest friends are women  who I have never met yet I love and trust implicitly, met on a Chronic Pain/Fibro group on-line. THESE women and I are here for each other even if only by e-mails, messages or by phone. I thank G-d for these women who are more loyal, supportive and loving than some of my so-called “friends.”

Radical illness

Radical illness (Photo credit: Wikipedia)

We know that there are more cloudy days than sunny days. We don’t expect sunshine all the time but even when the sun is weaving through the clouds, in and out, we appreciate the moments. We whisper our thanks in a hushed silence, trying not to let those dark clouds come further down and overwhelm us. It takes effort, I know.

 

 

It’s the in-between season now, we haven’t had that first bite of crispness in the air yet, like the bite of a fall Macoun apple, but, as evening comes rolling in, and darkness shrouds the trees, you feel the rain that is soon to come. You feel it in your bones, they ache due to broken wrists or ankles, the weather forecasting of having Fibromyalgia.

We can’t change our world, we can barely change our body. What can we change? A few things, our diet (no, I won’t give up coffee and ice cream) and our attitudes, different doctors. I could write a book on the doctors and methods I’ve tried. Let’s face it we are stuck, but we are alive to see our children grow up, a dog to love and for the dog to love us back. Having my dog rest her head on my knees or stomach makes me incredibly happy when I have to lie down. She is a rescue dog but really she also rescued me.

 


Dedicated to my dear friend, Judith.

 

 

 

 

 

 

 

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Fibro Life, Friday


Please, just let me sleep, don't find me...

I am too tired to keep my head up, I tried to make good on advice to get out more. As Fibro patients know, I’m paying the price. Minus two spoons. I owe two spoons from tomorrow, not that it really works that way, right fellow spoonies? We really can’t win either way.

I generally never complain about Fibromyalgia, Savella and Tramadol usually do the trick but then again, I haven’t pushed myself this hard in a long time. I really have to ask myself if it is worth it? When I am racing around town, doing errands, getting my hair cut, drinking a strong cup of coffee, going non-stop I am NOT able to handle it because apparently now, I am a wreck, a demolished car on the side of the road, Not one part left, it’s sitting up an embankment totally crushed.

I have given the same advice to my friends “don’t do too much” but I didn’t listen to myself today because I was on a new mission to “live, to explore, to get out of the house.” Yep, I overdid it.

I might be so tired that I can’t even eat dinner. Nah. Who is kidding whom? I’m sure I will perk up after food, I smell chicken breasts on the grill, the salad is on the table already, I’m chopping tomatoes for bruschetta. But, really, all I want to do is to curl up in a ball and somehow loosen the muscles in the back of my neck and fall asleep. I don’t see that happening nor do I see myself cleaning my room and organizing it.

Let me stay here, in the midst of my bed, covered with clothes and freshly washed laundry, next to my calendar and my phone and a pink and blue pen. I will push things aside in a corner, I won’t complain, not a sound will come out of my exhausted mouth except the sweet snoring sounds of an overtired, head-throbbing, weak patient.
Don’t tell anyone I am here, I am so broken I don’t want to be found. I just want to sleep. Shhh, please just let me.
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Venus Williams, I Feel Your Pain. No Really, I Do.

Venus Williams Portrait

Image by TGIGreeny via Flickr

It’s Wednesday night at 9:30 pm. I’m so tired that it seems to takes an effort to breathe; I just want to curl up and go to bed. Every muscle and joint hurt. Every time I have to get in to the car or out, I moan and groan with pain. The same goes for sitting in a chair and getting up, or on the bed or couch, movement is key.  Fatigue and joint and muscle pain are key players on our lives.

I’m so sorry you were diagnosed with Sjogrens Syndrome, another one of the auto-immune diseases. I have a couple of friends who have that too. I have Hashimoto’s Thyroiditis (an auto- immune disease of the thyroid) and Fibromyalgia, a chronic pain disease. Both of these illnesses together pretty much make life a lot more difficult. You will have good days and bad; some of us have it better than others. Sometimes you have to lie in bed when you have a flare- up and hide under your down comforter, other times you can push your way through it, especially when you have no choice. Many of us are mothers, wives, daughters and are not in the position to relax and sit around eating chocolate bon-bons (as much as we would like to.) My husband just had surgery on his Achilles Tendon, he will be on crutches for a very, very long time. It’s my turn to help him.

I truly am sorry you have an auto-immune disease however, honestly,  I am THANKFUL for all the good you will do for so many people. I once wrote a blog post about how I wished a celebrity would have a chronic pain disease because then maybe we would get the credibility we deserve. Chronic Fatigue Syndrome, Fibromyalgia and other chronic pain and joint diseases often don’t get the respect we deserve. There are many uneducated and insensitive, poorly educated doctors (many of whom I have seen.)  I hope you get proper treatment and follow-up with a Rheumatologist. Make sure you not only trust him/her because of their background and expertise but because you truly believe they want to help you get better. It’s key.

It’s a long road, a really long road. Take it one tiny tennis step at a time. Good luck to you. There’s a whole family of people with these diseases on-line, join us anytime.

Are You Even Aware, Do You Care? (ChronicBabe Blog Carnival)

woman

Image by Alessandro Vannucci via Flickr

Dear Doctors,

Fibromyalgia Awareness Day is May 12, but I bet mostly people who suffer from this debilitating illness know that.  There are people, fellow doctors even, who still think this is all in our heads. That IS the most insulting thing of all. Do you think we would choose this way of life? On purpose? Do you think that we would want to feel pain in every muscle and joint in our bodies for the fun of it? Maybe we just want attention, is that what you think? Do you know that I was diagnosed with two chronic illnesses within a matter of months and that menopause was the catalyst? Did you know that it was menopause that turned my body inside out and sideways, plumped up my lower belly and shattered my metabolism?  Do you know I eat less than the average child but I don’t lose weight and walking around the block twice is considered a work out?

I am going tomorrow to my third Rheumatologist to see what he has to say. He’s local, convenient and since I have had such different points of view from previous doctors I’d like to add yet another opinion to my massively, confused, Fibro Fog memory. That is if I can remember what we talk about which is as likely to happen as Christmas in July. I will try though, I will write things down, I will do intensive listening. I want to hear what you have to say. I wonder if you realize that a Fibromyalgia patient making an appointment to see you is not simple at all? It isn’t, we have to get there too and that is always a work in progress.

Did you know I saw a famous Rheumatologist for years, only to find out later, that the strong, immunosuppressant medications he prescribed could have destroyed me? That the medications he prescribed for me in his fancy office with his “Best Doctor Awards” on his walls, are only supposed to be used to protect a vital, organ? I didn’t know that either until another Doctor, actually two, told me.

Awareness is not just acknowledging a disease or many diseases; it is also imperative to take the accompanying emotional distress that it brings too. It’s no longer just me, it’s me and my shadow. We bring baggage, physical and emotional because many of us have dealt with this elusive, enigma of a disease for many years. Please, bear with us.

Even if you mean the best, you might not want to say “I know how you feel” because unless you are a patient, you don’t.  You can’t walk in my aching shoes, the soles of my feet are rigid, hurt and are on fire, right to the top of my head that aches at times with horrendous headaches, pounding me like turbulent waves on stoic rocks.  Are you aware, Doctors, that when some of  you treat us chronic patients like drug seeking  heroin addicts you demean us? You take away any sense of self-respect that we once had in the past? We know you try to help us but please understand how we feel. We feel pain, we just want some relief, once in a while when we need it the most. Try and understand that, we’re not looking for a quick high or to be comatose on life-altering drugs. We just want to be able to breathe without pain for a short time, ONLY, when we need it the most.

I’ll leave you with one thought. We know you try to help make us feel better. Just remember a moment of compassion, a light hand on our shoulder, an extra second of your smile means a lot, especially when we feel we have so little. If your son or daughter had the same disease and our same symptoms, would you treat him or her any differently? If you have to think about it, please consider treating us, like you would them.

Thank you very much for your time.

Sadly, The Biggest Fibromyalgia Fog Ever (And Food)

Stairs.

Image by ЯAFIK ♋ BERLIN via Flickr

A few weeks ago on a Saturday morning, my husband woke us up from a deep sleep at 7:45 am, which on the weekends is basically the middle of the night. We went to meet his parents for brunch “in the middle” of our two houses in two different States. What I thought would be a one hour drive ended up being two hours for us. Two long hours, coiled like a bright pink hair scrunchy  in the front seat of a very small car. I didn’t move around in my seat, didn’t ask to stop the car so I could stretch, I just sat there like a block of white marble. Why? What was I thinking? Apparently, I was NOT thinking.

During the trip there I totally forgot that I had Fibromyalgia. How could I forget that I had a chronic illness? I really don’t know but that is exactly what happened. It didn’t occur to me until I felt locked in place and could not get out of the car. I couldn’t turn, I couldn’t extend my legs out, I couldn’t move and finally, the long, first step from the car to the pavement was pure agony.  It was the greatest Fibromyalgia Fog of all:  Blissfully forgeting I had Fibromyalgia…until we got there.  Had I remembered the illness I would have stopped every half hour to get out of the car, stand up and stretch. I should have been prepared, physically and mentally but I wasn’t. I just wanted to arrive at our destination. When we got there every inch of my body hurt like thousands of razor blades performing a pain symphony.

We walked up a long winding, flight of stairs, my new arch-enemy, to get to the restaurant we were going to for the brunch buffet. I looked up the winding staircase and had no idea how I would be able to get up. Being stubborn and independent I clutched the banister with the strength I had left, my stiff legs and knees protesting at every step; I walked like a small child, one step with both feet at a time. I realized anew that Fibromyalgia is a horrible, debilitating disease and forgetting about it entirely was a terrible burden for my body and my feelings; I felt stupid and embarrassed. “Loser” I muttered to myself.

Finally upstairs we were treated to a lovely meal. The brunch was a buffet, a man played the piano, my teenagers were well-behaved, there were mimosas available and it looked festive. We feasted on made-to-order omeletes, mine with mushrooms and cheese. On display were cinnamon buns with drizzled, sweet vanilla icing. They served eggs benedict. an array of cheeses and fresh vegetables and Belgium waffles with a vat of whipped cream and another close by filled with bright red, plump strawberries. They had croissants and rolls and blueberry muffin tops coated with brown sugar. They had serving stations of steak with horseradish mayonnaise and grilled sirloin, all too carnivorous for me so early in the day. There were smoked salmon platters and my personal favorite, a lovely poached pear, the color of burgandy, with brie and walnuts.

Once we were finished I dreaded walking down my nemisis, the evil staircase. I had to take a deep breath with every painful inch that I could move. Each step sent electric shocks down my legs, my hands were red and swollen, as if arthritis had landed in my body unannounced. I stayed behind the family this time and managed with one hand to clutch the banister down and with the assistance of my husband holding on to my other arm. I felt like a 95 year old grandma and while I appreciated my husband’s help, I loathe that I need it. I don’t like feeling dependent, at all. The food cheered me up, it was lovely and presented gorgeously. I tried to remember that and not getting there or going home. Next time, please, someone remind me so I can avoid a Fibro Fog as stupid as this one.

The Beauty Of My Fibromyalgia

Red berries

Image by freefotouk via Flickr

My husband came home from town and told me that he heard an update about a mutual friend; that she was at the end of her life.  She has ALS, (formerly called Lou Gehrig’s disease) a horrible, disease that affects thousands of people every year. I felt terrible for her and her family and know how hard that disease is for everybody.  I pictured her in her wheelchair with her beautifully spun white hair coiled behind her in an old-fashioned bun, the bun that my grandmother in her nineties used to wear every day; held together with old-fashioned black bobby pins. There was one difference, the woman in this story is not in her nineties, not even close, she is 43.

I have Fibromyalgia and Hashimoto’s Thyroiditis and before you write me letters about how pain is all equal and that pain is pain and we have our right to our pain I will tell you this: the stripping of your body, one by one and of all your faculties, is something I would not trade for and neither would you. The last vestige of communication this woman, this YOUNG woman had been struggling was to try to write something with her twisted hand on a computer generated machine. Fibromyalgia pain IS pain. I know I have pain, I understand it and I can communicate it, I can’t solve it. When there is nothing that helps me feel better, at least I can verbalize this, at least I can try to focus on a pretty picture of strong red berries on a simple branch. When I clutch the banister to be able to go up and down stairs, I am mostly doing it myself. If I can’t and need a hand, I will ask for it and accept it and will be able to have the dignity to say “Thank You.” I can ask my daughter about her day or my husband’s first day of work or my son’s admission to colleges. I am able to do that and am thankful for it.

My husband, the most patient man on earth, gets irritated and annoyed with me when he asks me questions about the type of pain I am in. He is direct, like a prosecutor: “is it muscular?” is it in your joints?”  “does it stab, burn, tingle, come in waves?”  “is it sharp, is it dull, does the pain move around?” I’ve always been vague in my answers about how I feel physically because I am the type of person who can’t verbalize my symptoms well. Fibromyalgia is defined as having pain all over and that is what I have. Is it muscular? Yes, Is it your joints? Yes, It is all over and hard to differentiate from one Doctor’s appointment to another, Yes. We also have Fibro Fog, our endearing term for forgetfulness, makes us forget how things were yesterday compared with today.

Fibromyalgia changes every day, sometimes every hour; there were times when I was sure I had a really bad virus but my Doctor just told me they are “flare-ups.” My mother was concerned because I was sick so often, I never knew I had flare-ups, I didn’t know what flare-ups were; no-one ever told me.

I am not saying that your pain or her pain or his pain is any less uncomfortable because it is not life threatening. Listen to me: I am saying that pain is pain, and that it can be unbearable and it does affect your emotions and social skills. But, at least it does not deprive me, me personally, of the ability to still connect with my loved ones and friends and I am able to communicate.

There is no competition. Pain is pain is pain. My friend who is dying from cancer is fighting every day as she has for five years before her breast cancer metastized into brain cancer. This is not a game where whose pain, whose life is worse. This is MY opinion, own it or reject as you please. I do have enough pain to consider myself suffering. I may not have control over my pain but at least I still have control of all my faculties.

We are all at risk for everything, like everyone else in the world. There is so much sadness: health, terrorism, wars, economy,  that sometimes I need to focus on just by breathing, in and out, in and out.  Sometimes I need to slap myself out of my self-pity and give thanks for the things I can do and more importantly send blessings to those who are less fortunate than I am. Now.

The Peace Prize

Blue Water

Image by doug88888 via Flickr

In the small, contained river, ringlets of water come to me, float away from me. I feel relaxed, my body is not betraying me now. There is silence in the house, just my breathing, in and out, with an occasional sigh from my contented old dog. I have spent three days and nights in bed, aching, pale, listless; every muscle and joint screaming in pain, tight as twisted steel. Now, there is a little comfort of mind and body intertwined. My music plays in the background, I’m listening to “My Immortal“; by Evanescence.  It was my grief song and at the same time my healing song. I can listen to this song now without sobbing yet nine years ago when my father died, I crawled into a ball and wept every time I heard it. Sometimes time brings just a tiny bit of healing in increments as small as cells.

Many other days I am filled with questions and complaints but today they have been momentarily swept away. I try to keep my shoulders balanced so the tightness and stiffness will stay away. I do not want to be known as Fibromyalgia Girl. I want to be known as a woman with Fibromyalgia and not have the illness define me. Same too, I do not want to be Auto-immune Girl, Hashimoto Thyrioditis’ woman, The Woman with Chronic Pain. I am still the same person inside yet with physical limitations. Please, please, remember me.

When there is a day like today when I can release the labels and just be myself it is like winning a prize; a prize of peace. It is rare but on the days it does happen I am so relaxed I yawn automatically. Treasure this, I tell myself, this moment, this second, as long as it lasts; I know that they are merely moments of reprieve but I am grateful for them.

I am clean and polished, I want to organize, slowly this time, not like the crazy rush I did five days ago, punishing myself with aching limbs and so much stiffness I could barely walk down the stairs. I clutched the hand rail for  support, for guidance, my jaws clenched, my hair pulled into an unforgiving, tight ponytail ; my body was stone and cement and there was no softness, no pull, no elasticity.

I swing my right leg, back and forth, keeping time to silent orchestration.  The world outside is bright and bitter-blue cold. I have no interest in bracing myself and stiffening my body just to go out. I rather walk slowly through the rooms of my tiny, doll-size house and get reacquainted. ‘Hello, pen,  hello, Bridget, the stuffed pink poodle, nice to see you again’. I am trying to breathe in even breaths but the more I try, the more I lose my relaxed rhythm. I decide that that’s okay; I refuse to worry.

Nothing has changed in the outside world so I know today is a gift for the internal me. I can’t make it happen anymore than I can make it stop. I am grateful for the breather, a vacation for an hour or two from body and mind.  The jack hammers are on a break, questions are still unanswered, situations will ultimately resolve themselves. I am grateful for this one moment of peace.

The Sad Mom

wept

Image by the|G|™ via Flickr

I’m cold, terribly cold and I am not even outside in the twenty inches of snow we have. I’m in my bed with four comforters, a heating pad for my neck and shoulders and my feet are still freezing. I need to find those fuzzy socks that help tame the frozen beasts that are my irregular toes.

I’ve had Fibromyalgia for about five years now. In all this time I have tried many different medications and I have seen two or three Rheumatologists.  Still, no relief.  I am taking Savella and I am on the maximum dose and I swear it did work  for a while but now…..nothing. Does this happen with Fibromyalgia? I also keep getting new symptoms like my hands  and elbows and legs cramping in the middle of the night, symptoms that I was unfamiliar with but are now constant. I don’t understand this illness; perhaps nobody does.

Does Fibromyalgia encompass every symptom that has ever been heard of? Is it progressive? Why do I have more symptoms now than I did five years ago? I don’t know what to do. I don’t know which doctor to trust, if any. I also have an auto-immune disease called Hashimoto’s Thyroiditis which complicates my overall condition. I’m not feeling too lucky today; I’m just feeling sad, with no hope.

I have read countless books and articles, each one of them bringing a little piece to the puzzle but none of them fitting together to make a full-fledged picture. Ask ten doctors advice, you get ten different opinions. If you are lucky to get a doctor that doesn’t roll their eyes in disbelief, you consider that a win.

I would be open to new kinds of treatment , massage? acupuncture? diet? but I am not sure where to start. Not only do I not know where to start, I can’t pay for it even if I did.  Everyone “means well” and adds their opinion:  my mother says I should “just get out of bed and exercise more” when she doesn’t realize that getting out of bed is in itself is a painful exercise. My husband thinks I should go back on auto-immune drugs but I’m the one getting all the side effects and chemicals. Nothing seems to work. Nothing.

The only people who understand me are the people I meet in Fibromyalgia/Chronic illness chat rooms. I fantasize of a cure, an Oprah A-Ha moment but know that is unrealistic. I don’t like being the mom that has to be dropped off at the door of college presentations for my son and daughter, so I can sit down. I don’t like being the mom that sleeps a lot, when I can, and groans walking up and down our staircase.

I could easily start weeping but stopping would be that much harder.

The Lost Souls

I can’t stand the pain anymore;  I just can’t take it another second. I am having a hard time accepting that this is my life. I am not coping well today; I am not coping at all. Another day of stomach pain and too much sleep, no energy and endless trips to the bathroom, not leaving my home. Is it my long-lost enemy IBS revisiting me? Is it the side effect of the Cellcept that I am taking for my auto-immune disease, Hashimoto’s Thyroiditis? I don’t know, I really don’t know. I could easily start crying now, I just don’t know if I could stop.

I don’t know what to do and I hate that feeling, I feel powerless. I have no energy to fight or to make any medical decisions, minute or radical. I don’t have the strength or state of mind to start going to doctors anymore, again. What if I do nothing? Stop the medications and live like that? I’m scared. The medicine is supposed to be making me feel better and in some ways it does, except for the horrible side effects. Unless it’s a virus….See? There’s no way of knowing and I feel helpless, truly helpless.

People try to be nice, “Hang in there!!!” they write or say with heartfelt warmth. No. I can’t. I just can’t do it anymore. I’ve been pushed beyond my limit and I don’t know if there is a way to pull me back on board without me kicking my legs, punching fists in the air. I refrain myself from starting to scream obscenities like an absolute crazy person. I take an orange pill for anxiety, I drink a cup of ginger tea from a yellow ceramic mug. I droop.

It is clear I can’t continue to live my life this way. I’ve seen more doctors than I would like to see in a lifetime. Friends and relatives  yell out well-meaning ideas: homeopathy, acupuncture, massage?  There’s a doctor in Massachusetts, in Israel, two towns away? Try gluten-free, try vitamins, go to Dr. Weill, to this woman we’ve heard about in Brazil, how about the Mayo clinic for a minimum of $50,000 dollars and no guarantee?

I don’t want to talk about this, I don’t even want to write about it anymore except for the other “friends” who have painful and annoying chronic illnesses like me. They understand, they are the only ones who understand what it is like to live hour by hour. It’s not life-threatening, true, so we don’t get much sympathy but we have no lives to speak of.  What about us? The lost souls that linger in our beds, hoping for a surge of energy, a sign of life?  We are not part of the statistics because really, who knows about us? Who cares?   We are not in hospitals or reporting ourselves to the CDC.  We are not checking in to one specialty hospital because they don’t exist. We have symptoms all over the map, we are not just one disease. There are many, many of us who are unhappy, who are fighting each and every day ; we feel sorry for each other, because only we can understand the struggle, the fight, the emotional and physical pain that live with us just about every, single day.

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