There are many ways I express my creativity even though I am the worst “arts and crafts” person around. When my daughter was little and in the girl scouts I would ruminate for hours on what craft I could and would do to entertain the girls. I write (as you would expect!) and I also take photographs. There have been many times I have made collages out of some of the photographs I have taken and pictures ripped from magazines. I use quotes, poetry, even things that have broken, cemented on to the poster board of the day. I find that it really showcases how I am feeling at that particular time. I never plan it out, I just collect a lot of things and put it together the way I want. There is no wrong or right way. I have missed making a collage, thanks for the impetus; I’ll start a new one very soon.
According to my mother (my teenagers’ grandmother) you would think that society and civilization are quickly burning up with raging orange and red flames of fire because of two second text messages. That said, it is a new generation and technology obviously has changed interaction within families and in the general public.
In my generation we spent all our free time on the phone. I remember walking back and forth from the kitchen to the living room with the long, dirty, coiled, yellow stretchy phone cord to talk to my friends from school who I had just seen hours before. This was way before call-waiting too.
Then there was e-mail and even us parents could pretty much keep up with that as well as the older generation. But now? My children text obsessively on their multi-faceted phones and we have to force them to turn them off while we are eating (which sometimes they do and sometimes they pretend to do.) On a weekend away with the entire family our mother could not believe that the first thing her four grandchildren did was check their phones and Facebook. She was disgusted and distraught and my sister and I (and husbands) were used to it. Our mother took it as a personal affront.
Things change, people change, as parents we get used to things; we have no choice but it is helpful to set limits. The older generation think we have all lost our collective parental minds. In defense of my children they can keep up a great conversation at any time, they do well in school and we have adjusted. That’s what parenting is all about, you need to change with your children and with the times and set some boundaries. Is it easy? Not always. Will it make your children unable to have a reasonable conversation over a family dinner? No. Honestly, if I could figure out how to use one of those fancy phones I would own one myself. I have a simple, made for dummies phone and if I am lucky, I can actually call someone or pick up and scream “hello?” and hear a response. I consider that, for me, a success.
It’s winter time in the Northeast. Actually, it’s been winter time since Thanksgiving and it will probably last through April. We’ve had snow every two days; snow that does NOT have time to melt before the next 18 inches of snow comes piling up on top of it. We have been bombarded with wild, hysterical snowstorms and ridiculous amounts of snow for months.
My exercise during these long winter days and nights are the following: leaving my warm and cozy bed, wrapping myself with a soft, white, bathrobe, slipping on my beige UGG slippers and going downstairs on the carpeted steps to the kitchen. Once downstairs, I exercise my arm by opening the refrigerator, pulling things out, making something to eat: most likely fried eggs and cheese. I then exercise my jaw muscles to eat ambitiously, and drink YooHoo or flavored club soda.When I am finished I put the food items away back in the refrigerator.
I then prepare to go back upstairs, clutching the banister on the staircase, snacks now hidden in my plush pockets and pull myself up the stairs, take off my bathrobe, and climb back into bed. I cover myself with four comforters and then I use my fingers to: turn on the television, watch the Cooking Channel, reach for Raisinettes, check my computer and turn the lamp off so I can take as long of a nap as humanly possible.
Next day: Repeat.
Fear: I know your name and how you make me feel. My fingers are deep in the inner pocket of my blue fleece jacket rubbing my thumb and forefinger over the soft texture again and again. It is part of my life and everyone’s life at some point. It takes a long time to get over it but eventually you have to and you do. It is like a lazy turtle hiding in its thick green shell and only slowly, with caution, it sticks it’s leery head out and barely looks left and right. It retreats, yes, we all do but we do come out again. Maybe it’s a little easier the next time.
Life is like that, everyone can be terrified at some point and it took me years to accept that it wasn’t just me. I am still cautious, I still get those annoying, tight anxiety strings that pull and tug until they think they can wear me down. I try to push back but sometimes I fail and that is alright. There are solutions because we cannot handle everything ourselves. We need other people or we need medicine or we need to write down our fears or do a collage to rid ourselves of the scary lion, in our minds, attacking its innocent prey. Sometimes, we need to force ourselves to jump or to take a baby step or to skip like when we were innocent children. Remember the feeling of skipping down the street with your best friend? Pure joy and innocence and no fear whatsoever. Maybe we can still be that person once in a while.
It is alright to make mistakes and to make them all over again. Some lessons are hard to learn but not impossible. I know that I feel that too. Some people hide it better than others, some quake, some sweat, some can’t speak for a moment but eventually you find your OWN path. Don’t think it’s just you because it isn’t. I promise. Think of someone who you think has absolutely no fear and then think again. Everyone feels frightened some time in their life. There are some of us that wear our hearts on our sleeves, like me. You can notice my feelings on my face ten feet away, at least some people can; others, don’t notice a thing.
Sometimes I have to play a game. You can play it too. Plaster a great big fake smile on your face and pretend you are absolutely confident. Once my college teacher called it “the confidence game” and I needed it as much as anyone else. It takes time to master it but give it a chance. You might be happily surprised.
“What if I fail?” asks the nervous me. “What if I made a really big mistake?” I wept to one of my son’s teachers when he was in first grade, “Stand in line, she said “do you think you’re the first one to make a mistake?” To me it seemed colossal and I did fret with worry but it made me think. My son is now eighteen and I still think of her words, I can picture the teacher’s red hair and the tears on my face streaming down like a small but steady waterfall. When I finally stopped weeping and gave her a hug, I left feeling a tiny bit better. As years went by I always remembered that and now I give other people the same advice I was given. It is okay to make mistakes, everyone does.
If I had any failures in my life most of them were because I was “scared to try.” I look back at my life and think it might have been really healthy to have been fired once or twice, or scolded and reprimanded instead of TRYING to be the perfect me. My one badge of pride is that I did not pass on my own fears to my children. For this, and this alone, I have succeeded in a spectacular way. I have also forgiven myself for the mistakes I have made, because the decisions I made at the time seemed right. Now, knowing more and being older if I try really hard, I can make different choices. Not always, but sometimes and that’s perfectly good enough.
I had a friend on my blog who once lived in the same town that I grew up in at different times. We both lived in Kew Gardens, Queens. He would read my blog fairly consistently and would always comment with his classic signature “Mr. L.” even though I knew his first name was Abe. When I wrote about our old neighborhood, he loved it. I wrote a few posts on the now dissolved oldkewgardens.com about what it was like growing up in that sweet town and that is where we first met. He contacted me after that and we stayed in touch.
He hasn’t been on in a long time and I’m beginning to get worried about him. He was last living in California, I believe, and was contemplating whether he wanted to continue living there or not. Mr. L. to me, was like my substitute dad or uncle, since my dad passed away ten years ago. We used to kid around a lot and talk about our favorite gourmet delicatessen, The Homestead. I still dream about their Polish rye bread, sour and chewy and their faux Sachertorte cake made with many layers of raspberry jam between layers of creamy, sweet, chocolate cake. When I lived at home, every birthday cake was this particular cake inscribed with “Happy Birthday.” A real Sachertorte from Austria is drier and has layers of apricot jam but this was sweeter, this was MY cake.
When Mr. L talked about his deceased wife it was with such emotion, always, he still missed her so very much. From what he told me he absolutely adored her. In every “conversation” he would bring up his wife and talk a little about her; those little things that really make up a great marriage, sharing breakfast, the same bed, holding hands.
I know this blog post isn’t going to win any awards, nor will it attract a lot of people but that’s fine. I know Mr. L had adult children but I don’t remember where they live. So, if anyone knows him (and yes, I do know his full name) please let me know. I know I am overly emotional and sensitive, that’s a big part of who I am but I care about him and hope he is alright. I don’t want to lose Mr. L if I don’t have to. Mr. L. please come back and say hello.
ADDENDUM 10/19 2011. I HEARD FROM MR. L TODAY!!!!!!!!!!
I’ve gotten notes from friends far away saying “I don’t want to read that you are in pain” when they read SOME of my blog posts. When words strike an already high-wired nerve, I have to respond. I am a woman with Fibromyalglia; Fibromyalgia does not define me. It is part of my life and it has taken a long time for me to accept it but I do. You should too. It is only a part of my life just like food and television and good friendships and my amazing family. I write about all these things.
When I am in pain, I write out my feelings which, I think, everyone in the chronic pain community understands. To the people who read my blog and don’t share a chronic illness, let me explain: when I write these things down, I am trying to heal a little piece of myself. I do not write them for sympathy or for you to feel bad. I write about all my feelings, all the different parts of my life: like having teenagers or hiding orange cupcakes in my room or my sweet, aging dog. I’m sorry if you are feeling uncomfortable about my pain and I’m sure you wish I had less of it but that is not something I can control.
When something funny happens or I fall in love with a cooking show about “Desserts” or “Chocolate” or a delicious/horrendous meal that I have had, I write about that too. A new, dear friend I met on Facebook wrote: “you sure do like to talk about food” as we discussed dinner and I made her describe the chicken and dumplings she made in great detail (hint: buy Bisquik.) I complain about the boring lentil soup I have made and she tells me which spices to add. We both have chronic, autoimmune illnesses but we don’t focus on that. Our chronic diseases are a given. Life goes on and we with it.
I see photos of her beautiful garden with red, ripe delicious tomatoes stretching towards the sun and bright yellow ears of corn I want to bite into. I see her huge, beaming sunflowers on the side of her house and I am in awe of nature and it’s beauty and my friend’s talent. I taunt her with my (as she calls it “disgusting”) food combinations; pizza with jelly, tuna salad sandwich combined with peanut butter and jelly ( I only did that once) and all things edible. I tease her about her “texture” issues with food, anything “squishy” is unacceptable! Once in a while I will interject a questionable squishy food into a totally unrelated conversation: “raisinettes?” “shrimp?” and she understands what I mean and we laugh.
My evenings are brighter after we talk. This is a friend that has been more protective of me and more supportive than the “best friend” I had for thirty-five years. This is a friend I have made without meeting and if I never meet her, we will still be friends. It begs to ask the question: how do you define friendship? It’s given me a lot to think about. Friendships on Facebook with a common interest are special, we bond about something we have in common and in most cases (except one horrible group I was in) without judgment. Period. We don’t care about how much money people have or what religion they are or if they have a job. Be wary of a group that say they support everybody with pain and yet they discriminate and cause extreme pain to others who might not “fit in” to their exclusive or religious group. In the other wonderful chronic pain groups, we don’t emphasize anything except friendship and empathy, nothing else matters (if you need suggestions, write me.)
See me, please, as a whole person and if you feel uncomfortable about the days I blog about pain, please don’t tell me not to write about them; you could just say you are sorry that I am in pain and that you are thinking good thoughts for me. Our illnesses are part of our lives, but most of us try not to let them define us. It’s what we have to do.
Dedicated to Katie
My head is throbbing, my cheeks hurt from congestion, my legs feel like tree trunks. I want to get showered and dressed and hop into the car except I don’t hop anymore nor do I skip. In the best of times it’s hard to even walk, to get up from a seated position, to lower myself from standing to sitting in the car. I’ve been robbed. I have been robbed of my physical, mental and my emotional health by some unknown force like the robber fly as he takes his victim.
In addition to Fibromyalgia and an auto-immune disease, Hashimoto’s Thyroiditis I now have a simple virus or mini-flu which in the best of times makes you feel poorly. But, a virus on top of my other two chronic illnesses makes you feel overwhelmed. I can usually handle the discomfort and pain but not now. Not this time. Is it a flu, a Fibromyalgia -up or a flu on a fibro flare? No one can even tell me what a flare up really feels like or what it does to my body. I don’t really need to know but it would be nice if I could once in a while differentiate my sources of pain. I can’t. I only know that I feel worse, that every step is agony and that I groan going up the steps and down, clutching the banister for support. What has happened to me and who have I become?
I don’t have the energy or the will to get showered, dressed and out the door. Everything I do seems to be an overwhelming task. I cannot remember what it felt like in the past to have such strength and motivation and joy to start a full day. If I can do one errand, get out of the house for one thing in particular, it’s a good day; I have achieved something major.
Fibromyalgia hurts my body, my mind and my feelings. Imagine having a disease that gives you extraordinary pain when half the world is smirking and rolling their eyes and the other half are nodding with tears streaming down their cheeks in empathy. The world, as always, is divided.
I both dread and look forward to my appointments with my Rheumatologist. Sometimes I feel that THIS time he will have the magic answers, most times I can comprehend that there are no miracle cures. I have this chronic illness that will not go away, ever. I am not the same person who used to walk with friends for 3 miles in 45 minutes, who was a size 8, who belonged to a gym with my friend Lisa, who was young and independent.
I was a different person years ago. I worked full-time and drove back and forth to work, made dinner, took care of my child, went to bed fairly late and woke up to the shrill noise of my alarm clock and my husband’s arm nudging me awake. Who was that girl, that young woman? Why did you have to keep her held hostage forever? Why not even a reprieve now and then?
I sit, I wait, I lie down, I avoid the ice, the freezing rain, any chances to fall and break another bone. I lie back against three lumpy pillows and think about dinner or when I will feel able to pick up my prescriptions from the drugstore. I am not who I was yet I don’t recognize myself either.
Who am I? I am lost.
“What do George Clooney, Tom Cruise, Josh Groban and John Travolta have in common?” Yes, they are all great actors/singers and celebrities. What else? They are all handsome in their own way. Other than that? I’ll tell you. What they all have in common is that there have been many rumors swirling around for years that they are all gay: “NOT THAT THERE IS ANYTHING WRONG WITH THAT’ as the writers on the late, great Seinfeld show would say.
Who cares? Not me. Ricky Gervais threw out a line last night from The Golden Globe Awards mentioning two leading men who were known for their involvement in Scientology and for their homosexuality. Meow. I did think that was a little over the line but I’m sure some people salivated, nodded their heads up and down and smirked. It was rather forthright, but I expect that from Ricky Gervais, he is an unpredictable comedian. He was hired to amuse and to provoke people and apparently he did just that.
Some celebrities feel comfortable about coming out, i.e. the lovely Ellen Degeneres, others not so much. That’s alright. Not everyone has to go through life waving a flag for the rainbow coalition. It’s your choice….however if you are covering it up and lying, people with whisper. It hasn’t been long enough for everyone living in the closet to swing open the door proudly. Personally I go for truth over lies any day but there are still people in the world that would not like a leading man to be gay, to them, it just doesn’t fit. Tom Cruise, John Travolta are stars in their own right and both involved heavily in Scientology. Their personal live are their own but it would be nice for them to set it straight (no pun intended.) It seemed that it was perfectly alright that two straight men Jake Gyllenthal and Heath Ledger played gay lovers in Brokeback Mountain. What’s up with the double standard?
What I don’t understand is that some celebrities get maliciously outed ( ok, villified) by “entertainment” magazines and by the media. What causes one star to get the slick, slippery red carpet of secrecy and others get thrown to the wolves or in this case, the press. Is there money involved? I’m not suggesting it I’m just trying to figure it all out.
Why do we even talk about it? Curiosity. We want the truth and don’t want people pretending they are something they are not. I I would still listen to Josh Groben’s angelic voice as often as I do now. I would see good movies if the movies were good not if their characters were gay or not. It’s 2011, I’m sorry people still feel the need, and they do, to hide their homosexuality but that is their right.
Why do we want to know what’s real and what is fake? Because they are celebrities and they are in our lives through movies, commercials, ads, talk shows, the media and magazines at the supermarket check out counters. So, come clean if you want to, we’re all here to listen. Yes, it is a little like jumping into a lake of ice water. First, there is the initial shock but very soon everyone adjusts, jumps out or swims incredibly fast to get over that very first hurdle. Your fans are here and we are listening and waiting; for, hopefully, the truth.
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.
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.