- it is YOU, not ME
- HAVE YOU EVER HAD TO REPEAT A PROMPT?
- please stop asking the same questions over and over. many thanks!
- Dear Plinky,
- were you serious when you asked if we would miss you when it was ultimately time to say good-bye? Are you ending soon, or was that a TRICK QUESTION?!!!
- I would miss you, the way you used to be…..
- Repetition is BORING. I’m sure I have answered this question BEFORE…
- WE WANT CREATIVITY. CAN WE TRY AGAIN?
- Hugs and Kisses,
- Love, Hibernationnow
Why Do You Feel This Way?
I would have pushed my insecurities away, told myself there is nothing I can’t do and meant it! I would have followed my dreams to obtain a Psy.D and not stopped with a Bachelor’s Degree and a few Graduate courses. Laziness would not be a word in my dictionary. People would have called me Fearless Leader and not “Libra girl who can’t make a decision and is too lazy to keep going.” I should have, I could have but I didn’t. Was it wrong decision? Not really, it was right for me at the time.
Books, Movies, TV, Blogging, Music, Writing, Computer, Books…..Still bored after all those options? Get a grip! I’m generally not bored, and I’m generally not fussy. I’ve always been able to occupy my “alone” time. In childhood, our mom said I was happy to play in my room all by myself but that my older sister needed to be entertained all the time. I see that with my own children now: my oldest child needs to be entertained and my second born is more content and doesn’t mind alone time (though she probably wouldn’t admit to it). Maybe it has to do with birth order. The first-born child does get undivided attention, where us second born (or babies) have never known anything else except sharing. We’ve never had undivided attention. Maybe it’s a coping mechanism or just maybe we are more content. Or it’s simply a personality issue. Alone time, to me, doesn’t mean I’m bored, it means I’m comfortable with myself.
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.
As a Fibromyalgia patient I need to explain a few things that the general public doesn’t understand. Actually, there are things that WE don’t understand but we are clear on one thing. This is NOT in our heads. Whatever crack pot thought that one up was clearly not a pain sufferer. We didn’t ask for this disease that makes us live in a state of chronic pain. Believe me, no person would want this every single day of their lives, no person would choose this. We live our lives on the edge of our seats for two reasons: 1) because sitting one place for more than three minutes will hurt and 2) we can’t make plans ahead of time because we don’t know how we will feel on any given day. People ask me to do things and I always use the same line: “Let me see how I feel.” Of course I have said it over and over again but people who are not patients tend to forget.
Which reminds me: forgetting things, we start to speak and stop, we go upstairs to get something and then not remember what we are looking for. No, we are not feeble-minded, nor are we crazy, old, senile or menopausal. (Ok, we could be a mixture of things) There is something called FIBRO FOG which makes us forget, makes us as cloudy as fog rolling in to San Francisco. It is not our fault. Do you think I like looking like an absolute fool? Don’t you think it stings when my children say “I just told you that”or “Mom, I’ve told you that story 100 times.” I’m sure you did but “Fibro-Haze” got to me once again. I honestly don’t remember the last time I had a totally lucid conversation. I seem to drift half-way through. My husband recommended that I take stimulants, the pills given to people with ADHD. Thanks, but I’m on a lot of medications (that don’t help) as it is. Please don’t play doctor, you can’t imagine how many people do that to us. We know you mean well, it just doesn’t help.
If patients, had wanted this stubborn illness our homes would be filled with Fibro-Friendly items. We would all have an in-house masseuse. The refrigerator would be filled with our favorite soft foods, soup, pasta, cheesecake with an apricot glaze, soft and chewy brownies that won’t activate our TMJ. We would all have extra-king size beds so we don’t have to bump into our partners in the middle of the night. Hair stylists would fluff out our thinning hair to make us feel better about ourselves. Our bedrooms would be equipped with huge 3D, High Definition television sets, the exact height that is comfortable for us so we don’t strain our already tense and knotted necks and shoulders. All houses would come with nurses and aides, to drive us, do the laundry, cook dinner and attend to our every need. Our medicine cabinets would be filled with newly invented “Miracle-Meds”, an innovative medication that actually helps and relieves all of the pain. Not cocktails of useless pills that don’t do anything except make our stomachs, and IBS, feel all sorts of crazy weird.
Chronic pain, with no relief is horrible. Please don’t talk to us like we are psychologically challenged. There is nothing wrong with us except that we hurt. We hurt constantly with no relief. We have pain that is relentless, pain that is constant, pain that we have no choice but to accept it in our daily lives. We also don’t want your sympathy, but we would love your understanding.
Ever since my friend Linda and I were eliminated from singing in the chorus in seventh grade (with mean Mr. Patterson) I haven’t been the same and still think he was totally wrong (not that I hold a grudge). I have moved on and his mistake did not stop me from singing out loud and enjoying it but even being placed in the chorus? How bad were we? I love to sing and while I may not have the BEST singing voice I’m not horrific. I think I can carry a tune fairly well, I don’t shriek or scream, doesn’t that count for something? People don’t look askew when I sing or give me dirty looks. I have said before I enjoy it no end; the world needs people who love to sing. Music makes me feel better and since I can’t afford therapy as much as I would like or need, I have relied on this blog ( which has gotten me into serious trouble with some family members) and music. Music, trust me, is much, much safer.
I know I am dating myself and calling myself a nerd at the same time but in the early seventies, John Denver could take me out of any vile mood and make me smile and sing along. No, I was not “passing the pipe around” as he sang but he could always make me feel better. Always. Until he divorced Annie and then when he died. My best friend Paula and I were devastated. After not being in touch for months, we called each other that day. How could John Denver die? We barely had forgiven him for divorcing Annie. She “filled up his senses,” he named the song after her, they adopted children ( oh wait, am I confusing him with Tom Cruise again?) Apparently after the divorce from Annie, who we felt we all knew I think he remarried. I mean, really. Then there were viscous rumors, a lot of rumors about his excessive drinking, cavorting and doing major drugs. Allegedly. That was when the John Denver fan club ended.
But dying? That was a whole new and last chapter and one that was really sad and unbelievable to us. How could he have died in an airplane? What was he thinking? It seemed too horrible to think about; after all he was our first musical crush and the first ever concert we went to.
It took a long time after his death to play his music again. First it made me sad and angry and then with time, like everything else, I began to remember the John Denver that made me happy when Paula and I were in High School filled with some type of drama. Now I can still play his music (and yes, I do still play his music) and feel the happiness I felt when I was 15; kind of. It’s not really the same, of course, but now it’s better and soothing and I know every word to every song he ever made. RIP.
My latest choice of songs to make me forget my troubles and to smile is a song by The Kinks called “Better Day” which I have been playing every day since my friend Scott posted it. It is going to be my theme song for 2010. It’s upbeat and it makes one feel happy and hopeful like no other song. For variety, my happy mood music always includes Bruce Springsteen( that’s for you Claudine). I have different music for different moods; there is Josh Groban, Neil Young, CSN&Y and of course The Beatles. There’s also time when you just need girl music: Sarah Mclaughlan, Sheryl Crow, Wynonna, The Corrs, Carole King and Carly Simon, Madonna and yes, Barbra Streisand.
Of course this is all biased but we should never, ever forget Simon and Garfunkel whose songs I think should follow the National Anthem o or at least played in the Smithsonian. They sing Neil Diamond’s “Sweet Caroline at Red Sox games, there should be a place for Simon and Garfunkel, somewhere.
There aren’t many people I would see in concert again. Saw James Taylor and he was rude and sarcastic, saw Crosby, Stills and Nash and their voices were….umm…different. There is/was Peter, Paul and Mary who I could not enjoy since another legend, Mary, died.
I would see Simon and Garfunkel again (perfection)in concert and maybe Carole King. I leave the Rap bands to my 2 teenagers, I know they like it but they also like that we hate it. Works every time. It would give my husband and I a headache to go to a Rap concert, but it might be worth it to totally embarrass our kids!
So next time, before you head for the Xanax container or your favorite cocktail or 5, take a deep breath, turn on the music and listen. Listen until you find the song that makes you feel good, or if you want to cry, try a sad song. Therapy is very expensive and it is worth it bu give music therapy a try first. Music therapy, the first step for intervention, give it a try. Because even though it helps to have someone nod his or her head at something you said, music is relatively cheap, it’s always available and you never get charged for an appointment if you don’t cancel 24 hours before the session. Try it because the beat of music, really does go on and on….
For Paula, Scott and Claudine