Fibro UnFriendly

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If Fibromyalgia was a mood and not a chronic illness, it would be grumpy, mean, hateful and cranky. It would be the scariest monster that rages everywhere, over my bed, not even bothering to hide but willfully taunting me in the open. Once constant factor is the weather and its changes, enemies.  I want to set up all the old green plastic soldiers that my son used to play with constantly and place them on the Batmobile and fire truck and police cars and surge through dividing lines. I want to storm the troops of Fibromyalgia pain and run them over completely. In my fantasy, all that would be left in their place would be peace and pain-free living.

I know, I’m living in a dream world but it is better than the one that I am living in now. At night, which used to be my savior, snugly asleep under the covers, has now become another battleground. Pain wakes me up, the newest pain is in my arms and elbows and I never feel well-rested. I try to ignore it at night but minutes later it wakes me up again. I imagine the enemy mocking me, sneering at me as if to say “you thought I was only going to appear once then go away for the rest of the night? HAHAHAHA” ‘That is what I was hoping for’ I try to mumble under my breath.”FOOL” they spit blood right back in my face.

Why do all these new pains seem to intensify after my visit to the Rheumatologist when the blood work is in? Liver function? A little high? Sediment rate? A little high?  Auto-immune disease? Yes, I have that too, an auto-immune disease of the thyroid, known as Hashimoto’s Thyroiditis. When is it too high and what do they do about it? A question that has never been answered so far. Should I take Tramadol, “you could give it a try.” I don’t want to give anything a try, I’m frustrated and tired and inflamed and I just want a definitive answer which I know logically I won’t get. The answer is “let’s recheck your blood in two weeks.”

I’m frustrated, even the small flight of stairs in our house seems insurmountable. My ten-year old dog can come up and down those stairs better than I can when I am in a Fibromyalgia Flare (if that’s what this is, we rarely know for sure.) I have to grab unto the shaky metal banister and pull myself up, hear myself groan out loud, the sounds coming from me are more animal-like than I would care to admit. I try not to emit these sounds when my children are home but sometimes I can’t help it. They know I have this illness, but it doesn’t mean I don’t want to protect them as much as I can.

I drove away their monsters when they were little, why can’t I drive away my own?

Daylight Saving Time

Turn Daylight Saving Time Into SUNSHINE

Sunshine

I hate it. It’s not good for my brain or my bones. I think we need more sunshine and more warmth all through the year. Granted, I live in part of the country that gets snow often, and dreary weather and I resent it. I want to move someplace warm and perhaps winter on a beach in the Northeast. I want to be a classic “snowbird” and be proud of it. The freezing cold temperatures makes it difficult for me to move with my diagnosis of Fibromyalgia where every muscle and joint pain ache miserably. My mood is happier when there is sunshine, my bones are happier when there is warmth. What’s not to like?

The Object Of Being Left

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I sprayed after shave cologne on my wrists today, it was an old bottle with maybe an inch of liquid left inside it. I found it at my mother’s home, in an abandoned bathroom drawer, where she had hidden it after my father died. They were three odd-shaped bottles left, pushed back in a drawer like teenagers hiding beer or vodka. I took those almost empty bottles home with me and today I used one. The smell was so powerful and so familiar that tears immediately welled up in my eyes. I longed to see my father wearing his  soft plain purple and blue striped shirt and feel his  arms hugging me. I willed it to happen, almost believing it and then reality took over and left me alone with a sharp pain in my heart. I miss the one person in our family who knew me best with just a faint wink of an eye or a hint of a smile. I felt lost; I felt alone.

My dad died ten years ago and I don’t feel this way all the time but the pain goes away completely. I can feel fine for weeks or months and then some memory, a scent, the sight of his old shirt crumpled up in my closet will remind me harshly of my loss. When one is young no one tells you about all the pain you have ahead of you. When you are young you think you want to be grown-up and mature but you have no idea what that really feels like. There are times when it never feels good, not even for half of a single second of any one day.

I went grocery shopping today and met a friend whose son just graduated with my son. We talked about how their graduation from High School was hitting us both hard and in unexpected times and places. She said that once in a while she has to pull off on the side of the road to just cry and then, as if nothing happened, she puts her turn signal  back on and continue her journey. I have been on that road too. While I was in the grocery store I passed water guns and felt that same feeling of loss, I wanted to cry but I wouldn’t let myself. I thought about my son and his friends and the water gun fights, one tiny water gun pistol still sitting in the back of our old, big family car, moving from one side of the car to the other.

I came home and marched up the stairs to get to my room, as fast as I could hobble, to reach for my computer and for a bunch of tissues from a yellow box. The color yellow comforts me; it makes me feel happier. I thought about my son, who is a Counselor, away at camp. He left a week ago; I feel bereft. I don’t want to call him, though eventually I will. I’d rather wait to hear his voice on the phone, starting off with the same low-key “Hey.”I am being widely immature and over emotional, part of me knows that. He is not making the transition from home to camp to college easy for me. I wonder, if at college, will he forget about us as much? When he is at camp, his second home, we really do not exist and while I am proud of my independent son, today I feel sad and lonely. Here I am, at home, opening up the window of his musty room, surrounded by half eaten boxes of cookies. Pain, like accumulated  laundry that sits in the middle of his blue carpet, taunts me.

“What Music Do You Work Out To?”

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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.

Wildflowers Dancing

Image by slight clutter via Flickr

The sun is shining, I have my ready-for-Spring green jacket on and I am gathering my blessings like a girl in a field of wild flowers: purple, pink, apricot and blue arranging them in a wicker basket. Today, my heart feels light, my steps seem smooth like I was on an invisible ice-skating rink and my elbows, fingers, knees are relatively pain-free. This is a gift from Spring, at least for the day and my body rejoices. Will I pay for this feeling tomorrow? Probably, but right now I don’t care.

I raise my face to the sun and delightedly close my green eyes. My hair hangs around my shoulders loosely. There, right there, the first hint of Spring in the suburbs. My nose gets kissed by the morning air, the 70 degree temperature makes me wrap my arms around myself and I eat golden honey on toast with butter and slices of a green, tart, Granny Smith apple.

I am not in pain always, I just write about it when I am. This is my apology to those who think I have NO good days or at least some better days. I am here today and I am enjoying life. A purple crocus is peeking from the earth, my beautiful, shiny nine-year old dog is ecstatic to be on a leash and outside for a leisurely stroll. I am as excited for her as I am for myself.

The snow returns tomorrow and the day after but that happens every year as March comes to an end and the pranks of April Fool’s Day come early. The one day of warm springtime teases us like a devilish child that loves to taunt and run away to safety. We have all known and loved that twinkling, mischievous youth. We know that there will be a few more days of snow and many more of rain and gray puddles. But, since we have tasted Spring on our lips, like the first soft-serve vanilla Carvel ice cream cone of the season, we know that it will come back to us soon. It will be even warmer, and lush, with green velvet grass sprouting and windows wide open to chase away the miserable coldness and stuffiness.  Once we have sniffed  the Spring, we embrace it, when it returns, like a lost puppy. Laughing now, we drink iced tea and grin widely as we look at a bowl of lush lemons gleaming in a simple, blue glass bowl.

Buying A Purple Shirt While Eating Jelly Beans

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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.

The Tin Man Known As Me

Image by Brian Negin via Flickr

I am in a world by myself  of chronic pain, fibromyalgia and thyroid disease, yet I coexist with many friends. Friends that have similar ailments, some have the same, others that defy diagnoses but the symptoms define them. I have learned we are more than the sum of our symptoms but I have not yet learned exactly how to deal with it emotionally.

There don’t seem to be medications that  I can take (or haven’t been told about) by the myriad of doctors that I go to help relieve my pain.  First stop, the Rheumatologist for my autoimmune thyroid disease known as Hashimoto’s Thyroiditis and for Fibromyalgia. After that, to the Endocrinologist for thyroid levels. My Internist, the Pulmonologist, the Opthamologist to check for narrow-angled glaucoma. I have seen more “ologists” than a healthy eighty-five year old person and I am not complaining for a second; these are the facts.

If people ask me how I feel, I am at a loss to describe the symptoms. The latest comparison I can make is The Tin Man from the Wizard of Oz, without the oil can. I am stiff, I hurt, I move at a slow pace. It is very hard for me to get in a car and get out, these are not smooth actions, often I am holding on and heaving myself up; sometimes once is not enough.  I have balance issues too. I keep trying new medications but haven’t taken one yet that truly works. These are immunosuppressant drugs that are supposed to help relieve the muscle pain and aches I feel all the time, the operative words are “supposed to.” They also take eight long weeks before they kick in…..I wait a lot.

Tomorrow, to “get me back on track” before starting the newest of medications that I don’t even have yet, I am supposed to take Prednisone, 3 days of 30 mg, 3 days of 20 mg, 3 days of 10 mg. I have been on Prednisone before and I have mixed feelings about it. While I had no bad side effects before, there is always that risk. The emotional risk, to me, is even harder. I felt SO GOOD on Prednisone when I needed it last year that when I started lowering the dosage, I actually broke down and cried. In a previous blog I referred to it as if I was in the old movie “Cocoon” where older people feel young again from a miracle and then suddenly a short time later they are themselves again, old, aching, and hurting badly.

Tonight I feel anxious, tired, discouraged and down. I think once I am able to sleep, I will sleep deeply. It is always a game: whether to nap or work through it. Today, I was determined to stay awake. I am  deeply worried about a friend who is very, very sick with cancer. I was too upset to nap so I decided to push through the pain and get busy.  I got myself out of the bedroom and went to the kitchen to bake home-made banana bread for my family. Mushy bananas, a little vanilla, some chocolate chips, some raisins and the basics, to occupy my mind, my hands, and most importantly, my heart.

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!

Paging *All Doctors: Check Your EGO At The Door

Dear Doctors,

Before you enter a patient’s  exam room, where they have probably been waiting at least twenty minutes, stop, pause, and check your ego at the door. This should be standard procedure; but unfortunately it isn’t. There should be a confirmation box needing  a signature for “Check Ego?, next to the automatic Purell dispenser, to assure quality control.  *While the title is catchy I do know I cannot accuse all doctors of doing this but the ones I DO know (and you know who you are) are definitely in need of lessons in humility, humanity and sensitivity training. The bad part about it? Certain doctors just do not care. Full disclosure.

Two days ago I had an experience with my pompous, grandiose, full of himself, doctor who shall remain nameless.   Many of you have heard about this person before. He is an excellent doctor, scratch that, he is an excellent DIAGNOSTICIAN.  He charges exorbitant prices and he does NOT take insurance (insurance, what is that? what is it for?  Me take insurance? Ha Ha! ) but he is very smart, I’ll give him that. Is that really enough? Do we have to pick expertise in lieu of great beside manner, can’t there be a combination? That said, he is so out of touch with the “real world” that it is insulting, aggravating and utterly demeaning. Unfortunately for me the deck is stacked; I need him, he does not need me; and he knows it.

I had been to a local doctor (one who takes  insurance) and the doctor I saw asked me to have Ego- Dr.  fax her some information.  A reasonable request, I thought.  I thought wrong. When I e-mailed him, he flipped out and as an old friend used to say ” had a serious nutty.” I’m talking a crazy outburst in print.  I’m serious, he was FURIOUS. “He should fax her?? ABSOLUTELY NOT.  “If she wants to call him he would try to talk to her but he will not answer specific questions.” The questions she asked, were so innocuous, I have no idea why he made such a fuss. Perhaps he realized that he was dabbling too extensively in my case, acting as Head Dr. of Everything.  He also mentioned that “if I chose to see a doctor in MY INSURANCE PLAN, so be it. His implication was clear, without saying it, he made it known that he felt “You get what you pay for.”

Unfortunately, I need to see this doctor a few times a year for my auto-immune disease/thyroid illness.  I am considering looking for a second opinion and more importantly, some sensitivity. This man is well-known in his field,  however, he is not well-known for his “bedside manner.”  When these magazines come out with their rankings of” BEST DOCTORS” who is filling them out? Other doctors?  Which leads me to think that it might be a little biased.  Maybe they should ask patients and ex-patients their opinion to get a clearer view.  A great idea: ex-patients, that would be ideal “why did you leave the practice of Dr. So and So?. Please explain. Now that is a survey I would read with relish.

Apparently the phrase “First do no harm” was meant merely in a physical way. Some doctors should think about their actions and take responsibility for them. A person is not just a symptom, we are multi-faceted people who deserve YOUR respect as well. A doctor who treated the whole person? That to me, would certainly deserve the title of BEST.