PAIN 11/11/11

I AM convinced that menopause was the catalyst for my getting a thyroid disorder, actually an auto-immune thyroid disorder called Hashimoto’s Thyroiditis and Fibromyalgia which crept in….no, more like, crashed into my body right after menopause and never left. It also changed me from a happy person to a somewhat content person. I am more anxious, I have more fear. If PMS was a wading pool, menopause for me, was like a tsunami.

I had been to doctor after doctor, half of them not having a clue what was wrong with me (including my beloved internist who walked out of the examining room in frustration and left me crying inside, alone.) There was a rheumatologist who said I had “scoliosis” and that my auto-immune disease of the thyroid would leave me “wide open for other auto-immune diseases.” Thanks, really helpful and informative not to mention it scared me half to death. I had another rheumatologist who put me on cymbalta and when it did not help said she could do no more and a maniac rheumatologist who put me on various, toxic medicines that are generally given ONLY to transplant patients so that they don’t reject a new organ. He also let me stay on one particularly noxious medicine that gave me gastrointestinal problems so badly I couldn’t leave my bathroom for a month. When I called him after a month and told him what was happening, he said just “give it another month.” A month later, weak and dehydrated I had an office appointment and he said “my bad, that was my mistake.” YOU THINK?

It’s hard to remember “Before” menopause since I am convinced that menopause and fibromyalgia both robbed me of my memory. What was I saying? Why did I come up here? What did I want to remember? Frankly, its terrifying. I can remember verbatim the words spoken in my husband’s and my first fight but what I did yesterday? Not easy at all. It also robbed me of all the energy I ever had, poured it out of my body with an invisible pump and threw it in a large body of water far away from here. It could be fueling the energy of a little known country for all that I know…..

I consider myself a sick woman now, not a healthy one. My Fibromyalgia flare-ups have been so long and pronounced it’s like they are my new constant. I don’t remember when I didn’t ache in agony. Movement of every kind makes me groan out loud. I’m not asking for sympathy or even help, I am hoping for understanding. Please, just remember, I HURT all the time, whether you believe in this chronic pain disease or not. It is my unhappy life, not yours; do not judge. I don’t complain to you, so please don’t offer suggestions. If I want your opinion, truly, I will ask for it. You have NO idea what I go through so don’t even think about saying “you know how I feel.” Trust me, you don’t.

“What Music Do You Work Out To?”

Image via Wikipedia

Non-Work Out Music?  Sure.

Oh, be serious, not EVERYONE works out. I am not speaking just for myself but on behalf of some friends of mine…..well, we don’t work out at all. We walk. I can’t honestly say this is a work-out though it is well-intentioned but speed walkers we are not. We stroll, we talk, we share and we don’t listen to music but to each other. It’s our time to be with each other, when the wind is a gentle breeze, when the sun is not intense and when it is not cold out. Are we particular when we want to walk outside? You bet! Besides, I am the most particular since I have a chronic pain disease called Fibromyalgia and usually I have to conquer my aches and pains to even get out the door. It isn’t easy.

If I was to walk alone or use the treadmill ( LOL) the songs I would listen to would be “Story” by Sarah Ramirez (from Grey’s Anatomy), a 1980’s song by the group, Red, whose name I have forgotten entirely and possibly anything upbeat from the Beatles, James Taylor, Carly Simon, Simon and Garfunkel and Crosby, Stills, Nash and Young. I am stuck in the 1970’s with my taste in music and when CD’s were not born yet and I listened to records, over and over again. Unfortunately, my chubby body is still stuck in the seventies as well! The best thing about being in your fifties, is image matters less and quality of life matters much, much more. Enjoy your life, whether you work out or not.

Buying A Purple Shirt While Eating Jelly Beans

Image via Wikipedia

This is the kind of post you want to read on a Monday afternoon when the clouds are all gray and gloomy and it is the start of a brand new week. The orange-green-red leaves on the trees are swaying and they look like they want to cry. I’m thinking about the future and living somewhere else where the sun stays out all day and you don’t have to wear a thick black jacket.  The only perk today is that our house is clean and it looks pretty. There are no cobwebs that I can see and the wood shines like a Pledge commercial. It smells lemony and the beds are made and the sheets are fresh and I am planning to take a hot bath tonight. It’s against house rules to put your dirty body into a brand new made-up bed with sheets and blankets that beckon you and smile.

It’s our friend Christina’s 16th birthday and she looked so sweet and innocent and happy like a shiny polished Macintosh apple. My son drives her to school and back every day along with his sister seated proudly in the front seat. Christina was wearing the soft beige scarf that my daughter gave her for her birthday. Her arms were packed with brownies and oatmeal cookies and chocolate cake that her school friends made for her birthday celebration. Oh to be young, filled with sweetness, innocence and incomparable joy. I see myself in young Christina, all eager and willing to please, her arms outstretched for a big, warm, hug.

I’m listening to music to quell the anxiety that has been plaguing me for the last week. It starts in the late afternoon and escalates until nighttime; my stomach clenches and my legs ache with unbearable pain. My aches and pains stem from stubborn, bossy, Fibromyalgia and sleep comes as a welcome relief.

I’ve taken down all the photographs of my children when they were very young and replaced them with an up-to-date picture of the two of them grinning, their eyes alive with mischief; my son’s arm casually draped around his sister’s shoulders. I had to beg and plead a lot for that one portrait. While I am extremely proud of my children’s independence I have had a few problems lately adjusting to it.  I can’t forget the moment last year when my son said patiently “Mom, High School is one big lie.” It is a message that has been burned into my brain and I think of it often.  I didn’t believe him then but I do now. Apparently, lies are commonplace but I need to force myself to look deeper, for honor, and not compare my past, unhappy and burdened youth to their present, over-indulged happy lives.

I am booking a massage at the local spa, a gift I received for my birthday, and I am looking forward to it. There, I will not think of the last year, tension pressed up against stress like two sweaty lovers: unemployment and illness together as one.  I will fantasize about traveling, seeing the tulips in Holland, a trip to Israel in the spring, perhaps the countryside of Spain. I will picture my loving husband’s face, his hand in mine, playing the punch buggy game in the car and competing in the “I love you more” contest. I will remember that when I asked him for a phrase, another definition for “empty nest” he threw his head back, howled loudly, with glee and in a snap of a second he shouted: “Freedom.” I love him so much in many ways but I especially love him for giving me that.

Dedicated to Danny

lucky (for Jolene, the Bloggers and Invisible Pain Carnival)

I think I am lucky. I do. Now everyone will be mad at me and I will be thrown out of this precious group of supporters. I’m sorry and I know this is not what you are looking for in this blog carnival but I have to be true to my self. I am lucky. First of all, I don’t think my symptoms are all that bad compared to many of the other bloggers; I feel like I don’t deserve this group. Yes, I have pain but it doesn’t sound half as bad as my fellow members. I feel like a fraud, and a lurker and ashamed.  Second, a close friend of mine is dying of cancer, around the corner from me and she has weeks, maybe months to live. She is a wonderful person, someone with a sunny disposition, a great mother, good friend, an absolutely lovely family. Her name is Dawn and she is at least ten years younger than I am so she is in her early forties. When she was able to walk she would ask me how I WAS doing. How I WAS feeling and when you asked her, she always said “fine.”

She is not fine anymore. She had breast cancer and then brain cancer and now I don’t even know where the cancer is because it might be all over her. There are no more treatments for her, no more cures, no more hope. I am alive and she is dying. She has three children, 19, 16 and 13, all three amazing kids. They don’t deserve this in life and neither does she.

I drop by with food, I make a special chilled peach soup for Dawn because that is the only thing she can eat, a tablespoon or two of soup, if her family is lucky. I haven’t seen her in weeks but I know she got bad news on Sunday from Memorial Sloan Kettering Cancer Hospital in NY and no-one has seen her since. I don’t know how long she has to live but I feel it isn’t going to be very long. Her parents were in from Wisconsin for a long time and when her mom saw me and our mutual friend, her mom started crying and she and her husband, Dawn’s parents, continued to walk, slowly around the block holding on to one another.

I have Fibromyalgia and an Auto-immune disease called Hashimoto’s Thyroiditis. It was partially diagnosed 4 years ago. I felt like” I had the flu but without the fever.”  That is the only way I could describe what I was feeling and how badly it hurt.  I couldn’t get out of bed, I couldn’t do anything but sleep and moan, my whole body aching all the time. I felt like it had been flattened by an enormous truck,and the truck kept going but I did not.

I felt sorry for myself and my mother, and sister and husband and kids and friends felt sorry for me. I get tired easily, I live in the “fibro fog” people talk about, I can’t keep up with everyone else; I don’t try to either.  Still, with aching limbs, and joints and bones I am alive. Yes, I hurt but I don’t think I hurt as badly as some of you and I don’t hurt as much as Dawn’s children who are at home, by her side as she breathes, as long as she breathes. I may not have the perfect life, my husband hasn’t worked in a year and we have no income coming in. I have a Junior and Senior in High School but I can’t complain, I won’t complain because I don’t deserve to.

I am here today with clenched shoulders and tired, swollen feet, aching, tender and swollen, red joints but I am here. Even though there are a lot of things I could complain about I can’t. I won’t, because I’m lucky.

Soggy Cereal, Wilted Lettuce, Elizabeth Hasselback and Me

I am too tired to think, speak, eat. Too weary to walk, talk, move. My body is aching and sore from being in the car yesterday for more than 4 hours total. In the car, out of the car, each movement is painful, uncomfortable and is such an unbelievable effort. It was visiting day at camp and we were NOT going to miss out on seeing our kids, who are  really not kids anymore, they are 16 and almost 18. They will, to us, always be our kids, our grown-up babies.

The Imuran medication which I take for the aches and pains of an auto-immune disease, Hashimoto’s Thyroiditis, an Inflammatory Disease, Fibromyalgia and possibly Arthritis, has not done a darn thing; at least not yet even though I have been on it for six weeks. I know, I know, I will give it 2 more weeks, just in case.  I’m tired of being a patient, even more so, a patient, patient. I want to stop all the wretched stiffness now; my body is wearing me down and my mood is plummeting. I don’t even think a good dinner would cheer me up and that speaks volumes,  for anyone who knows me. Food is Life, Life is Food. Too tired to even eat? Something is very, very, wrong.

I am part of a club that I don’t want to belong to.  Here I am amongst the champion women of chronic pain, chronic tiredness, chronic everything survivors club. These other women/friends have such better attitudes than me. Tonight my attitude is pure, personal, chronic misery. I feel dreadfully, chronically old. I am 53, I still feel 5 in my mind and over 85 in my body. I think young, I act young and child-like (ok, childish too sometimes) but I move like a very ill old person whose limbs  and joints hurt. Everything hurts me. I know it’s not the end of the world and there are far worse things, but I’ve been going through this for the last three and a half years. It gets better with one medicine and then I have to stop the medicine because of evil side effects. This is medicine number 3 and I don’t see myself going for a 4th. I’m so done.

I am even (gulp) considering a gluten -free diet when I return from vacation (a free cruise, I can’t start now!!)  and when school starts. I’m thinking it over and as much as a foodie as I am my health is more important than the taste of food. I hope. Did I just say that? Seriously?  I wish. I truly believe that because being on a gluten-free diet AND not feeling well will definitely put me over the edge. That, as Oprah says,” I know for sure.” I know there are gluten-free cookbooks out there but honestly, I will not spend my money on Elizabeth Hasselback’s cookbook, no offense. I will probably buy the “other” gluten-free cook book just because I find Elizabeth annoying. I am not saying she is a bad person but she is definitely annoying (not to mention way too conservative).  And so I sit, and wait and creak. Any comments or suggestions from you, my friends, about gluten-free diets would be greatly appreciated especially if you can talk me into being enthusiastic about it!