Early Bird or Night Owl

Old?

Elderly Couple – Vintage

Early bird or night owl? Are these the only options? I’m neither. Oh dear, I think I am old. With one child in college and another child a senior in high school, I am able to sleep later in the mornings. Do I stay up late and party? I hate to confess, the answer is no. Maybe, instead of just old I’m also dull. Great…. I used to want to go to sleep before my husband or after for peace and quiet and lately, I love having him near me as we both fall asleep together. He was away for four weeks so maybe I’m just appreciating him more now.

I’m boring too. Gasp! It’s true. I never was a drinker, was always more of a homebody, even as a teenager, so I guess I’m still the same. I write, I read, I am now addicted to Pinterest (which I can’t pronounce.) I used to be much more independent when I was single and lived alone, before I got married. I stayed out late with friends, we went to dinner after work, to the Village, to the movies. We were out late and up late fearlessly taking the subways at all times of the night. Sometimes when I came home late, I then rearranged the furniture in my studio apartment or cleaned until 3am with my music blaring and me dancing like the Jennifer Beals in Flashdance (a movie from the seventies.) When you are YOUNG and living by yourself, it’s “fun.” You would have to have me lifted by a crane to do ANY cleaning at any time except during my normal waking hours. I’m neither an early bird or a night owl. What does that make me? I’m 55 years old and yes, I do have a few chronic illnesses that make me more tired but they are not life-threatening. I’m going to give myself a break (for once) and just say “I’m normal.”

Worrying, Lamb Souvlaki And Pollyanna

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I’ve had way too many changes in my life in a short period of time and I feel unsettled. Anxiety attacks have crept up on me like the sting of bees approaching quickly, out of nowhere.  I feel anxious, on and off, and I am not too proud to admit it. A lot of people have feelings of anxiety, that’s why there’s medication and breathing, writing and music, and today, cleaning and keeping busy. Usually there are friends to talk to but my dear friend is in England having a great vacation and others don’t really make the effort or are just too busy with their own lives. My worry and I are together, we’re holding hands.

My mom has been sick and I am worried about her; her anxiety is fueling mine. My mother who was always seemed so strong and energetic seems  more vulnerable now, she’s had a horrible year and she’s scared, we both are. I’m “meeting worry half -way” as my old friend, ex-nun, lesbian and former boss used to say. That’s not doing anyone any good. I am scared for my mom and for me,  I think she is too.  My sister is usually the Pollyanna type in the family so I just wrote her and asked how she felt, maybe she can comfort me. I know she is not a worrier, and even though she is extremely positive about these sorts of medical situations I’m not sure it will rub off on me though I hope it does.

I have a wonderful husband, two great kids, a lovable, sweet dog; I have a home to live in and food on the table. So, why am I so unhappy? Better yet, why am I feeling so anxious lately?  I know I am worried about my mom but things have also been changing quickly.  My son graduated High School and is at his second home in Connecticut being a Counselor at his old sleep away camp. I’m told he’s very happy, we haven’t heard from him. I wonder if it will be the same way when he starts college in September but I am not ready to go there mentally yet.

When did fun flee from my life, like people racing out of the water at the mere hint of a shark sighting? What is happening? Last night was different and I was thrilled.  My husband and I went to an old, small, family -owned Greek restaurant, I ate Avgolemono soup (Greek chicken, rice and lemon soup) and pita bread, he ate lamb souvlaki, big, fat, french fries and a salad. Afterwards, we saw the new Woody Allen movie and ran into friends. Throughout the movie I did not worry, I was entertained and charmed by Midnight In Paris. Welcome back, Woody Allen.

Xanax is a prescription medicine that just takes the edge off of being worried, it doesn’t fix things, it smooths the sharp edges like green and blue sea glass. My feet ache, I think I have a broken bone in my left foot, it is hard to walk up stairs, it is hard to walk, it is hard to breathe. There is no way I can hobble around in the city, as planned, I will postpone it until after the X-ray next week and the results of my mother’s tests. More importantly,  I will  “talk” to my deceased father, sending messages and prayers into the dark sky like shiny, silver helium balloons. I hope you are right Pollyanna, I really, truly do.

Best Friends – Chronic Babe Style

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The best friends in my life have common traits: warmth, kindness and the gift of caring deeply. They are all people who I can rely on without a single doubt; that is something very important to me. Some people have a big family to fill these roles; I have my friends.

I met one friend when our children were six, they are now eighteen. Two years ago, in the dairy aisle between the orange juice and yogurt of our local store, I took a chance and impulsively asked her if she would like to go for coffee one day.  I didn’t have to worry, she said she “would absolutely love to” with a big goofy grin. Since that day we have seen each other at least once a week at our favorite diner, we talk daily and we e-mail. When she thinks I look wan and tired, she tells me to sit, when she thinks I am not feeling well enough SHE begs off and reschedules.

I’ve also had a best friend for thirty-five years, we met at work after I graduated college. We’ve been through so much together that our friendship is practically tenured. We have gone without talking for months on end, if not years because she disappears emotionally.  I tried to break up with her but when I thought of the word ‘best friend,’ I saw her sheepish face and her emotional handicaps. I don’t understand why she does it and neither does she but I accept it and we work at our friendship. No-one said friendships are always easy.

I was two when my other friend was born and we were inseparable for the first eight years of our lives. We were childhood friends, bound together by foundation, emotional glue.  We grew apart, with different interests and different locations yet there was never a birthday when we didn’t send each other a card. I got married and had kids and lived in Boston, she had Springsteen tickets and a new boyfriend. Even though we may not see each other for years there is an emotional connection and joy built into our foundation, like red bricks for a building. If I needed her, she would be there for me in one second, no questions asked and I would do the same for her.

I have best friends on line who support me and whom I support in our chronic pain journeys; we give each other all that we can and it is always enough. Saying that you understand, you can relate, is a gift that we inherently have. Everyone is equal here and safe. There is one person I consider a ‘best friend that I have not yet met.’ I trust her advice, love her honesty, intelligence and wit not to mention our shared love of everything sweet. I have a friend on-line that I call my ‘twin’, another that I call ‘my little sister’ and one I refer to as ‘the mother hen.’ There is a friend on another coast that I would go to if she gave a seminar, not thinking twice that I had never met her in person. These friends on-line are important in my life; we send each other messages of support, and soft, gentle hugs that you feel in your heart and they cause no pain.

These women are in my home with me on my laptop, helping me when I am down, congratulating me when I feel better, always available for a question. We are a group of people with a common thread of pain, sharing support, advice and friendship. We understand what others are going through because we are there ourselves. We are not just friends; we are a circle of women, connected; another way of saying family.

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

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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.

i want outta here

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i’m sicka my body, sicka my self, cranky as all hell for bein my age and my character and my illnesses. so sick i wanna steal someone else’s body and call it my own so i can feel myself for who i really am. know what i’m sayin? i don’t wanna be a granny, too old for who i am inside me. my body doesn’t match what i feel in my heart. i cant be happy anymore least not tonite because now my ear hurts and i dont wanna go to see my doctor cuz i am sick o doctors, doctors o every kind. i got lots of different doctors one for everything, and then some. none of them ever did me much good an i don’t care if they are hotshots. no cure, no care.

i wanta be another person in another place, or maybe me in a different time. i want ta be in hawaii like when i was 30 and in love and slim and my green eyes were dancing and my legs, arms, face, body was tan, like with healthy skin not like some tanner beds they have now. i was as brown as milk chocolate and equally sweet. i was someon way back when and i mattered.

now im just old and hurting and i ache so much all the time that it makes my mind go unhappy and a little nervous ass too. who am i now, i dont like this stranger, this whiny mess, she is not me but afraid she is me. i just dont like her anymore, not the way she is today. bring back that girl with the twinkling, brazen green eyes and the perfectly shaped lips. replace her sagging jowls with happiness and the black circles under her eyes, make them disappear too. you are old now and sick and there will never be a witness to who u were before you got these chronic illness like fibro and hashimotos thyroiditis. you know what it means. it means you hurt all over, all your muscles and all your bones and nothin makes you feel better any of the time except maybe when you sleep. sometimes when i sleep i wake up at 3am and then everything is just worse than usual because things get scarier and you feel really alone. try to sleep tho, because its your only escape from relentless pain. try.

jus remember in the mornin, you gotta start all over again, cuz there never is a tomorrow that is different than today. because sometimes life is not so fair even tho there are people that have it worse. but after awhile when u don’t get a break you think you gonna just lie this way forever and someday get smaller and smaller but you will still be lying on that bed, under blankets except the bed will stay the same but not you, no will just go on and disappear, like angry dust in the air.

The Sad Mom

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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.

“Because I Am”

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Tonight I am having a pity party for one; I am the guest of honor. You are welcome to join me but motivational speeches and happy clichés are not allowed. I’ve learned that the sun will probably not come out tomorrow, it will be cold, dark and windy just like the last few weeks. Some of my friends with chronic illnesses seem to be feeling the same way: Is it the weather?  Seasonal Affective Disorder? Pain and unhappiness? Other friends that don’t have chronic illnesses are also fed up and feeling down. I’m wallowing in self-pity and I am allowing myself to do so. Wallowing and venting are the main attractions in my self-imposed symposium.

1) Both my husband and I have been very discouraged because of the job market; he has been unemployed for a long time. He is always the best candidate, the one they love, the one they want. We get excited, euphoric even, and then the final news hits us like a tsunami: “We would love to have him but there is no funding approved for this job now” or “There’s a hiring freeze that just  started.” We plummet, like rapidly deflating black balloons.

2) I need to protect myself from future painful disappointments. While, in the past, I have tried to feel positive and hopeful,  I am now keeping my defenses up because it is too damn painful to feel excited and then let down over and over again.I am tired of feeling bad and blue and not having anything to look forward to. Yes, I have tried to be positive, I count my blessings and I list the things that I am grateful for: nothing works. A good friend of mine told me she was depressed last week and I asked her “why?”  “Because I am” she said. I now understand that completely.

4) Physically, I have no energy. I’ve been over-eating and sleeping way too much these past two weeks. I’m trying to sleep straight through to May but the chances of that are pretty slim. I stopped taking the autoimmune drug that was helping my energy level because it made my legs ache continuously and I wanted to rid myself of extra pain. This is what happens when I try to rid myself of drugs and toxins in my body. I end up asleep. I made the wrong decision.

5) The holiday season is not joyful for me. After my father died, the holiday spirit died with him. We go through the motions for the children. I’ve accepted this but each year after his birthday in November things start to go downhill fast, straight through to New Year’s Eve, the night he passed away. Why can’t I prepare myself? Why is it only familiar when it is happening again? Think of it as a long, a really long extended period of situational depression.

6) I’m having a default Thanksgiving in my house this year. My mom broke her wrist and I just couldn’t let her have it in her house. She is also depressed because of her broken bone and pain and having to be dependent on others, this affects me too. I feel bad for her. I can’t begin to talk about my self-involved sister, there is too much to say and at the same time, nothing to say. Thanksgiving is in one week, I have nothing prepared and I am both overwhelmed and underwhelmed.  I will rally for the holidays because I have to; it’s a necessity not a choice.

Let me tell you directly what I want:  Accept how I feel and allow me to have the emotions I do have. Don’t analyze, debate or criticize me. Try active listening. Help out during Thanksgiving and be kind to one another. I would truly be grateful if you could do just that.

9 And A Half Minutes, Episode 1

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Tick Tock, Tick Tock. Welcome to another edition of 9 and a half minutes. A place where I mention the things that annoy me. First up: SPAM. If you are going to send out this trash can’t you make the effort to spell “dear” CORRECTLY? It’s always misspelled and it’s in all  lower case letters :”hello deaer.” This bugs me. Not to mention that I get hundreds of junk mail every day and yes, I do, have a SPAM filter.  I am OCD about the amount the junk mail that I get so I need to check it and delete it frequently. It’s supposed to automatically delete in one month but that never happens. Every day I get the following suggestions: “buy drugs, enlargge your penis, veagra for womens, congradulations deaer, autimatic lottery winner”….just stop sending us this junk. Here’s my suggestion: ” go away, get losted, please, hun.”

Another thing that’s irritating is the call you get on a Sunday night from your favorite hairdresser, the one you found after years and years of searching. The one you trust implicitly. You finally find her and sure enough, one day you get “the call.” You know what it’s about, the minute you get the message “It’s Linda, from Tresses” on the phone. Deep in our hearts, women everywhere  know that the only reason your hairdresser is calling you at home at night is because she has fled her old job, stolen your chart and is working somewhere else. My dilemna: I love the way she does my hair but she has joined a salon that I fervently despise. It’s not the end of the world and yes, a mere annoyance but these things add up.

It has been a horrific couple of years and many of us are suffering the consequences of a bad economy. The idea of a vacation used to give me something to dream about, to look forward to. Key word: USED TO, past tense.  Even though it may not be financially feasible, it was something to dream and fantasize about.  Thinking about flying someplace warm in the middle of winter or early spring used to make me so happy, an inside secret I tucked away in my heart. Now? Thinking about flying makes me anxious, another mood elevator crashes to the ground (no pun intended.) With the media screaming about terror alerts and bomb threats, who wants to fly now?  Flying used to be fun, an exciting adventure. Now, you wait in very long lines, several times over, experience huge delays, body checks, shoe checks and most importantly, basic primal fear, anxiety and paranoia. I’d have to think it over for a long time before I would fly again and then, I would literally have to be sedated. Where’s the joy in that?

What is there to look forward to now? The economy stinks, the unemployment rate is ridiculously high and everyone seems to have less money or no money at all (with the exception of perhaps the super-rich which is even more annoying.)  The world, as we know it now, is a scary place. I know things take time but even I am losing patience. The country needs some good news, some great news. We need something, anything to feel good about our lives; I don’t care what it is. Give us a glimmer of hope, a tidbit, a really solid fantasy.

It’s the first week in November and we had sleet, snow and a power outage for six hours the other day. At this point, I’d even welcome some global warming: as in the warming up the country variety. If you hadn’t guessed it before the other thing I despise with a passion is winter. I would love to sleep straight through to spring. It’s cold and dark, scary and we all get sick; especially for those of us with chronic illnesses and pain. I know life is not perfect, believe me, I know. I also know you’re not supposed to “sweat the small stuff.” But, when the BIG stuff is all bad, the little stuff just adds an additional amount of worry and annoyance;  it makes us cranky. Very cranky. I’m not Andy Rooney, I’m just little ol’ me but I’m seriously pissed off. Join me next week for another edition.

A Dream Is A Wish That Your Heart Makes

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I speak with a raspy whisper a voice unknown to me when I was younger. Starting in high school I became the adolescent lioness that practiced roaring with my brown braided hair that ran down my back in lanky curls. I learned to lick my ferocious lips with pleasure getting into funny escapades with my best friend Paula. I spoke with great assurance to teachers and professors whose titles meant nothing to me. My body language stated that I was their equal because I too was involved and able to keep up a conversation; I read the book review from the New York Times.  Of the many poems I penned one was selected as the winner to  recite in person to the poet, Rod McKuen. I mattered back then and I turned heads as I wore my black leotard that clung to my body like a kiss, my worn denim jeans that hugged my body with a warm embrace and my brown clogs that clicked and clacked happily down the hallways. I had a voice back then, a sweet, cajoling, flirtatious, strong voice that I no longer have. I had a lot of dreams when I was younger but in the past four years, saddled like a working mule, with Fibromyalgia, Hashimoto’s Thyroiditis and Chronic Pain I seem to have lost them.

I used to dream that I would publish a book and it would be a best-seller. I saw myself on Oprah, chatting it up, I could practically hear her whisper into my ear: “you go, girl!”  Oprah and I would be friends, and I too would get all the presents that the audience gets, including: the trip to Austrailia, a brand new car wrapped in a giant red bow and one present each of ALL her favorite things, retroactively, of course.

I used to sing out loud, off-key and high-pitched, but that didn’t stop me from believing that Simon and Garfunkel or John Denver would welcome me up on stage to sing with them. I could see the white stretch limo parked outside my apartment building to pick me up. All our neighbors and friends would be hanging out of their apartment windows to see me. After that, I was so sure that I would be the first mega millions lottery winner that I worried about security and who would handle my new financial windfall. Could I deal with all this money? Four years ago with my diagnosis of Fibromyalgia and Hashimoto’s Thyroiditis, things changed. With the focus on my pain I lost all of my dreams and tried to learn how to cope.  The dreams died like fragile moths hitting a glass door, violently and forever.

I always dreamed I would get married and when I was 30 I did. I married my best friend and we’ve been married for 22 years. A year after our wedding we started trying to have children with no luck. My dream back then was to get pregnant and have a child, more than any of the previous dreams wrapped up together. Finally, after two and a half years of painful injections and grueling testing at an infertility hospital I got pregnant and that was one dream that did come true. I loved being pregnant and I glowed with delight, all the more because I had experienced such pain and anguish with the infertility process. When my son was one I got pregnant with my daughter and having a boy and a girl made all my dreams come true.

While I daydream about traveling to Holland to see the cheery tulips bloom or a trip to Spain’s countryside I know those dreams come with a huge price tag now: pain, special accommodations, and sacrifice. I am not the young traveler I used to be, I worry about traveling and all my limitations. I’ve accepted the aches and pains and sore muscles and swollen joints of Fibromyalgia and Hashimoto’s Thyroiditis. I live with the chronic pain and the cloudy haze that encompasses my brain.  I can’t entertain the thought of a possible cure because I couldn’t stand to live in my body, hoping. I would not be able to cope with life as I know it today; my skin crawls stealthily out of my body just imagining it. I need to protect myself  and my friends from that faraway fantasy. If I could protect those I love from heartbreaking devastation and pain I would. My new reality is giving up on a lot of dreams that I used to have; like my size 10 pants, that no longer fit me. My new dream is trying to appreciate the good things I do have now: my family, my dog, my dear friends.  If I could I would spin a protective web, thick like golden honey that would protect my family from pain and heartbreak. Living in the here and now, appreciating every moment that we do have is my everlasting, unwavering and constant dream. I had to redefine my dreams as I had to redefine my life, my life as a chronic pain patient.

People Called Me Lazy

My Fibromyalgia was diagnosed four years ago along with an autoimmune (Hashimoto’s Thyroiditis) disease and a connective tissue disorder. They both were gifts I got after menopause. Thanks. I’d rather burst into tears a hundred times and change night shirts six times a night than have this. I’m sure I’ve had Fibromyalgia for a long time, I just didn’t know what it was.

I never had the same amount of energy that other people had and I always needed ten hours of sleep. I can’t function on less than eight but ten is ideal. Let’s not forget the nap too. I used to nap every day for three hours, every single day and I would head to bed at 9:3o pm each night. Every bone in my body hurt, I  thought I had the flu,  without the temperature  but it never went away. New pain pops up like the springs of an old mattress and I just sit there in utter disbelief.’ No,’ I would say to myself,’ it can’t be. Isn’t there enough pain and discomfort?’ Sigh. Apparently not.

This pain I have makes me feel like a hundred years old; my 83-year-old mother is in so much better shape than I am. She does yoga once a week, she swims every day,  she is out of her apartment all day, going to the city, socializing with friends. She literally runs around without stopping to rest or sit down or G-d forbid, nap.  In the beginning, before she understood, (does she really understand now?) she used to tell me that I needed more exercise which is a common thing for people with Fibromyalgia to be told, over and over again. Read My Lips, NO CAN DO. I can barely make it around the block twice with my friends. They continue for a third loop and I beg off, mostly I’m fine with it, a few times I have had a twinge of embarrassment even though there is no reason for me to feel that way.

You get unsolicited advice from many people, people who don’t have a chronic pain illness. Go holistic, just get massages, change your diet. They might as well say dye your hair, or drink raw eggs or spin like a top and throw up as a cleanse. We KNOW the choices that are out there, really, we do. But generally we look to other pain sufferers for the answers not you. We know you mean well but frankly, it doesn’t help us.   Often, we don’t know WHAT to do and we are the ones that are suffering.  I’m there now. I’m not only caught up in the cotton-headed Fibromyalgia Fog (where am I, what did I come up here for?) that is my life but I feel unsure and anxious about my options.  I don’t know what to do or who to turn to or who to trust.  My energy is better from the medication I am currently on but now I have new pain in my legs. Great, I can stay up all day having more energy but with more pain. Do I have more pain from the side effects of the medication or from Fibromyalgia or wait, it could be from my auto-immune disease or connective tissue disorder. Listen up, world, I can’t speak for other people, but I am often unsure and clueless, trying to live in this world, day by day. I’m the first one to admit that I have no clue if what I am doing is right. How can we know that? We go to top doctors and hope for the best, sometimes it just isn’t enough. Do we settle? Do we stretch? Do we give up on medications? Is six weeks enough time to know that a medicine is working? Who knows? We don’t have the answers either, believe me it’s our fervent wish to understand and solve these medical mysteries.

I have stopped scheduling things in advance because I don’t know how I will feel that day at that time. My good friends understand, they will say “let’s talk the morning of” and I really appreciate it. My friend Sarah will just say “let’s see how you feel” and her concern (and no advice) is for my health and I know she just wants me to feel good and be happy; I also know she worries about me. I appreciate everyone’s concern, truly, I just sometimes don’t know what to say. I wish I was healthier too and in less pain,  I wish I didn’t have new symptoms from time to time but I do. Please understand that I like it a whole lot less than you. I know you feel bad for me but be careful of your words, saying “just when I thought you had every symptom in the book, you get another one,” is really not helpful. I know what I am going through you don’t need to tell me. Just be there for me, listen, offer me gentle hugs and a shoulder to cry on, be supportive. Take it from me, that’s plenty and more than enough.