I am sick, I am not sick, I am

Pain #TP637 (Photo credit: ConnectIrmeli)

I am not sick. I am. I am sick if I feel pain, pain hurts. Sick is pain, not bumping up against walls and tremors. So, I am not sick. Not now. Not yet. You did hear me, right? I am not sick. What happens when invisible illness become visible? When a pink cane accompanies me everywhere? I am not invisible anymore. People see me and give it a thought, “oh, there’s something wrong with HER, I wonder what it is.”

I think the same thing, flatly, without terror, at least today. What IS wrong with me. I have shut down for the most part and if I could stay in bed in my white-flowered pajamas, thin and comfortable, I would do that all day and night. I can’t. My kids are home today for a visit and as most parents know, I would do anything not to scare them or put them through any unnecessary concern.

I am unbalanced, imbalanced. I cannot walk a straight line. My neurologist was cavalier the first time he saw this, in fact he ignored it. Why would he ignore something as strange as that? Maybe because he ran over his 8 minute limit.  I don’t like him. I don’t like a doctor who does not acknowledge emotion, who pretends it is not there. I need to switch. He didn’t want to give me this second MRI but my” huggable rheumatologist” insisted. He is a doctor I respect. A person that you can be proud to call your doctor.

I need a favor, I have asked a friend and she can’t do it. I have asked another friend and I haven’t heard back. I hate asking for favors. Do I ask again or just call a cab? I’m too tired to even make this decision. My room is disgustingly disorganized and I don’t have the energy to clean it but I will try for ten minutes. There is a banana bread in the oven baking for my son for his 24 hour visit, I would have crawled to make that for him, I had to lean on counters but I did it. I just hope I don’t burn it since I am lying down upstairs.

I’m getting very tired. Tired of tests, tired of illnesses, tired of sickness upon sickness piling up on me. This blog is the friend I can always talk to. I do not tell my mother half of what is going on because I don’t want her to worry. Here, I can say anything, I am not seeking pity, just a few minutes of peace of mind. It generally doesn’t work but I give it a try. I have nothing to lose. I cannot hide because I am here, just because I don’t complain does not mean I don’t hurt.

photograph credit to the noted photographer above.

no rights.

FIBROMYALGIA: Now With Added Trigeminal Neuralgia

English: ‘A pain stabbed my heart as it did every time I saw a girl I loved who was going the opposite direction in this too-big world.’ (Photo credit: Wikipedia)

Hey Fibro. Can you hear me? I’m a patient, you’re the chronic illness.

Just pile it on, OK?  Not that you are asking my permission or anything, you’re not. One diagnosis after another, I figure there’s more to come, how can I not think that way? I feel betrayed by my rheumatologist who said it wouldn’t get worse. Yeah, right.  I’m an almost 57 years old, (OLD is the operative word,) woman who is utterly falling apart physically. Nope, not even plateauing. Yesterday afternoon I had an appointment with a neurologist for TMJ, I was referred by a doctor I trust. TMJ  causes a great deal of pain, daggers of sharp pain waking me up in the middle of the night, relentless pain. All a chronic pain patient needs, right?

“I don’t have ANYTHING to do with THAT” “I can’t help you at all, said the young doctor.  I don’t  know why she sent me here, he said, that is not  part of my job.” When things are down, and I am tired and feel sick already, I go down and tears started running down my cheeks. Here was my chance to take away one type of pain, I knew it wasn’t going to take away my Fibromyalgia, my chronic pain, my Imbalance, my sleep disturbances or  up my energy levels but at least I hoped that something, anything could take away one of my many types of pain I have. I asked him to call the referring doctor, really, the only doctor I trust in the world.

He was gone a good fifteen message and I took the time to “pity party,” now sobbing into my hands and getting red and swollen with a drippy nasty face. As Oprah has described it, I did “the ugly cry.” I cried  loud and hard and the people at the desk must have thought I was having  a mental breakdown which in a way I probably was. So, after my cry-fest the doctor comes in and says there has been some progress. “Really?, I thought skeptically” I was still crying and he was not acknowledging that in any way whatsoever. Not one, “I’m sorry you are so upset.” Not a :, “I know this must be difficult for you”, NOTHING. He ignored me. I found that appalling. He looked through me. Thanks, Doc. My internist did that too a long time ago. I remember it in detail, she, I’m sure doesn’t, just part of her busy day. DOCTORS:  Be human, SHOW EMPATHY. PLEASE

He then proceeds to tell me that I have another condition ( as if he forgot a teaspoon of sugar in a recipe) : ANOTHER CHRONIC CONDITION NAMED TRIGEMINAL NUERALGIA AND it has to be addressed immediately, which means another medicine, probably damaging my kidneys and liver so it has to be watched carefully. Blood tests, follow-up visits etc,

Guess what? Not only did I try it for two days but it made me MORE dizzy and light-headed. I missed a festival in town that I was longing to go to, I missed out. Again. So, tonight I stopped. I was supposed to double the dosage today and I said “No way.” I was tripping over everything and I looked and acted drunk, without have had anything alcoholic to drink. I COULD NOT WALK, EVEN WITH MY CANE. I’m taking over control. Got it?

Chuck the new medicine and call the non-empathic doctor who will most likely call in another script and call it a day. But this time, I’m ready and I WILL NOT CRY. I WANT ANSWERS AND NO MORE DRUGS IN MY SYSTEM. TELL ME WHAT TO DO WHEN I GET THE ATTACK, NOT PREVENT IT. NO MORE MEDS! I’M DONE.  I AM IN CONTROL, NOT YOU. ANY QUESTIONS? I’LL BE HAPPY TO ANSWER THEM, OH, AND I WILL LISTEN AND RESPOND BECAUSE EMPATHY IS MY STRONG POINT. LEARN SOMETHING.

Yellow Magic Madness #29 Spinning Yellow, Out Of Control

Wheel (Photo credit: Today is a good day)

I am a very

spiritual person and so I pray. Tonight, my oldest friend is in the ICU, his kidneys have failed him. We were born one day apart, he never let me forget that I was older by one day. Our mothers met in the maternity ward in our old local hospital many years ago. Tonight he is fighting for his life. Yellow magic, Yellow light, The joy of Yellow, the Hope.

My mind is spinning out of control, like a misguided ferris wheel on the wrong speed, it’s going too fast. He went through a bad time physically last year. I feel like I am living in a surreal world. Right now, all I think about, is him. I’m scared and sad and yes, a little angry too. Please don’t die, please. You had a lonely life, but you have us, your friends. Don’t give up. I am begging you.

10:30 PM : My phone rings, I don’t recognize the number, the voice sounds muffled, I hear loud BEEP- -BEEP sounds every few seconds. My friend has called me, I am shocked, happy, relieved, confused. We talk for only a few minutes, I tell him that “I love him, that all his friends do” he becomes emotional; I was so grateful to hear his voice. Let him make it through this night, and another….just one slow day, after another. Breathe…Breathe, Breathe.

Carry on Tuesday: Once Upon A Time

Out of fog Bay Bridge and Golden Gate Bridge and San Francisco in fog and crepuscular rays. (Photo credit: Wikipedia)

There was a time once, not so long ago, when I was chubby, fat, or just pleasantly plump. In Italy I would have been a goddess. Men would have followed me down the cobble stoned streets, whistling and begging to touch my beautiful breasts and my bountiful behind. Unfortunately, I wasn’t living in Italy, I was here in the United States, where all I really wanted was to be slender. I thought if I was thin, all my problems would dissipate like the mysterious fog in San Francisco. I imagined the fog lifting while I watched, wearing a heavy knit red sweater and sitting peacefully on a huge rock.

A couple of months ago I was very sick, (on top of my chronic illnesses” Fibromyalgia, Hashimoto’s Thyroiditis, IBS) I couldn’t eat, I couldn’t leave my house or the bathroom for an entire four weeks. I was pale, gaunt and looked ill. People on the street would ask me guardedly “If I was okay?” Part of me, if I had a sense of humor back then wanted to say “Of course, I’m in the middle-aged super model competition” but I had no sense of humor at the time. The other part of me was scared to speak so I just said “I’m fine” which people accept with relief and don’t follow-up with questions.

All my life there was always something about me that I wanted to change and after I changed it, I thought I would be happy: my weight, my hair, my glasses, wearing make-up, dressing better, nice shoes, tinting my hair to cover the tiny amount of gray that swirled in front of my face. The gray hair that I had been so proud to have, to acknowledge my real place in the world, as someone who had already experienced a great deal of life and had earned them with pride.

Having been married for 24 years with two young adults doing well in college was proof enough and even though I did go through a time feeling sorry for myself that the kids ” didn’t need me anymore” I realized my husband and I had done a very good job of parenting. I admit, I needed to remind myself that loving and needing were two very different things, they would love me as their mom but their lives and our lives would be constantly changing. Yes, sometimes it changes so quickly it was hard to keep up, that’s when I found myself alone, crying into an old, soft, handkerchief and feeling sorry for myself. I learned to accept that too. You have no choice.

Six weeks ago I went from eating and being lively to not eating and not feeling well, I lost over 30 pounds and before you coo and ooh and ahhh and wish it was you I can tell you, you better take that back. I did not enjoy clothes falling from my body, or food flowing through me, and not being able to go outside of my house for four weeks. The doctor scheduled me for every “cancer” test known to humanity and that was not fun. The doctor, not known for his bedside matter, actually told me WHAT he was testing for when we first met him in his office. Thanks, Doc, nice touch.

I will be getting the results later this week, I’m hoping that everything will be fine, I’m ( fairly) certain that they will be. The symptoms stopped a few days after my office visit and while I haven’t gained a lot of weight back, I do get hungry and I feel better. My newest ( little ) problem is this: I went to shop for new jeans and found that there are no jeans for women of my age. They have skinny jeans, under the waist jeans and jeans for teenagers with lithe bodies. Basically, the clothes that I have are four sizes too big for me and the style out there now are for teenagers only. I have nothing to wear, I miss my “Mom jeans.” It is impossible to find them, anywhere. Suggestions?

All that I have accomplished in this quest are the lack of clothes to wear and the acquisition of numerous wrinkles. I sat outside in the sun for a few moments, noticing all the wrinkles on my knees and thighs that were not there before. As I sat, warming my face, was I thinking about the good things in my life in a delighted way? No. I was thinking about the barium test (drinking chalk) that I have to drink tomorrow morning at eight am and where to aim my projectile vomiting. That, at least, is amusing me.

Be happy with what you have and who you are. As my dad used to say “Health is the most important thing.”  It’s the only thing, be grateful.

Plinky Prompt: When was the first time you felt like a grown up?

Yes, they do cry during sessions! (Photo credit: photosavvy)

• When was the first time you really felt like a grown up (if ever)? See all answers

• Edit answer |
• March 18, 2013 by hibernationnow

• All grown up?
• We had just had our first baby and after two and a half years of infertility treatments this little boy was our miracle. He was born at the end of October and we were so careful not to expose him to germs. We did not allow anyone near him if they were sick or if they thought they were going to be sick.
  Nevertheless, at six weeks old, he seemed to have trouble breathing and was congested. We immediately called our pediatrician. I tried to feed him a bottle but he couldn’t drink. The doctor said bring him in right away.
  As my husband started the car and I cradled the baby in my arms underneath a pile of soft blue blankets. I realized for the first time, that I was responsible for this little boy’s life. No one was taking care of me, it was my job now to take care of him. At that moment, even though I felt a moment of  incredible fear run up and down my body, I became a grown up.

Carry on Tuesday: I have wiped the slate clean

Description unavailable (Photo credit: wakingphotolife:)

There was so much anger and resentment in my past, in my youth, it piled up like a bloody automobile accident on an icy winter day. Black ice that you can’t even see, like feelings that you didn’t know you still had. They snuck up from deep inside me and burst, like popped balloons. Years and years of self-teaching and negotiating and drawing lines and speaking up and creating boundaries had finally come. There had been teachers and books and confrontation to arrive at this peaceful place now, a place of breathing and thinking, forgiving and living in the present. It took a lot of work but I was proud of myself, finally.

I had wiped the slate clean and all the baggage of my past was behind me. However, I look across at you, my lover of five years and I fear it is still in you. I begged you for years to come to therapy with me, to work on our relationship but you refused. Does it mean anything to you that I have done all this work for our relationship? You shake your head back and forth and say in a low tone: “Not really.” You scratch your beard and stroke it, a habit that I have come to detest. I shudder from the cold temperatures in the room and in your answer which is void of emotions. You do not like change, I know, why would you like change; you haven’t noticed anything was wrong to begin with. I sigh deeply. I don’t know what to do, how to respond to you, you are a creature of habit and you annoy me now, this highly predictable presence in MY artist’s cottage. I don’t know if you belong here anymore, I mutter that under my breath but you don’t listen to me, even if I had shouted it out loud. You never listen to me, do you? You just hear what you want to hear, as if you were a five-year old boy, plugging his ears with his fingers and screeching some vile noises, getting louder and louder by the minute. I want to slap you but I have to control myself because that would be getting nowhere and I abhor physical violence in every form. Look what you have almost made me think of doing!!

I get up from our scratched wooden kitchen table, I feel sick to my stomach and head to the sink and heave into it, my long brown hair falling far into the sink. I am trying to vomit the destruction out of my body but nothing comes out. I want to look at the decay, describe it, name it, show it, but I can’t. I can’t even do that right. Nothing comes out of my body except the decaying dry heaves of a woman starting to become undone. No, I will not let myself do this. I stop myself and breathe. Slowly.

I lay on the sofa, with a red and blue crocheted blanket tucked around me that my mom made for me years ago. I’m tired, confused and feel very much alone. I don’t know what to do right now. I know in my heart and deep inside me, just one thing, we need to separate.  I need to be free, he is stifling me and I feel I can’t breathe anymore. “He had” no idea, he will wail, I’m sure, when I would later say this a mere week later. But, it was in the room with us for a very long time. He just wasn’t paying attention.

I Wish I Had Twizzlers Right Now

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Random things about me:

I love deleting my SPAM folder. I don’t just like it, I look forward to it. Now its at zero, YES!!

When I eat a piece of dark chocolate I feel virtuous. Let’s face it, milk is my chocolate of choice, it’s sweet, it’s sensual but dark is healthy and I’m aiming to please. Health points, two for me.

Haven’t had red meat in three months. When hubby starts grilling those famous burgers of his outside, I know I won’t be able to resist. I can deal with that: moderation.

I am proud to say that I both Love and Like my son and my daughter and I’m Proud of them both. This is an amazing feeling. It gives my life purpose and meaning. They have turned into wonderful young adults, 17 and 19. Goal: Achieved.

It takes my ten-year old dog more time to jump on and off the bed. I have noticed a difference in the last year and it breaks my heart. You can never be ready but I am starting to prepare myself. Preparation: Grief. I need to do this. I love her THAT much.

Starting to explore the Internet for new recipes  to try. Good for me.

Bought a juicer, used it for a week. Hid it. Pain in the ass to clean. Need to find it (again) and man up. Love the juices, hate the cleaning. I need to get over myself. Fail.

Am reading a trash novel, it’s a nice break from all the morbid and depressing books I always read. It’s not even trashy as it is easy chick lit although rumor has it that the phrase is not politically correct anymore. Sorry, Jennifer Weiner, author.

When I wear the perfume Angel, I feel special and people compliment me on it all the time. I like that.

I dress so poorly, my daughter is a bit ashamed of me, she has a right to be. She’s taking me shopping soon, I’m more than a little afraid.

I have very bad feet. I can only wear one type of sneaker with orthotics. Other people with bad feet understand this. Fashionable girls (like my daughter) do not. That, I cannot change.

Deviled eggs, roast chicken, banana bread, pot roast, pea soup, chicken soup are things I cook/bake extremely well.

I once pooped in my pants when I had a stomach virus and couldn’t make it home on time. Mad sick.

Last night I woke up and my jaw was locked, it was terrifying. I must have been clenching my teeth so hard I could not open my mouth. Grabbed an Alleve and swallowed it, thankfully it helped.

I have a fear of germs and sickness, especially getting the dreadful Eppiglottitis again which just about killed me. Twice. Pain like searing swords in a red, hot throat. Childbirth was easy compared to it. Please don’t come back again. I carry Purell in my purse.

Sometimes I feel scared and anxious of things in advance, I try to talk myself out of it. Sometimes it works, sometimes it doesn’t. I hate when it happens.

I still have stuffed animals and I am proud of it. There is no age limit on stuffed animal friends.

I tell myself that “life is short” so I should “enjoy each day” but then I forget. Working on it.

The TV Executives should never have taken off the show “Brothers and Sisters.” Don’t even think about taking off “Parenthood.”

I should listen to more music.

Carry On Tuesday – Stop All The Clocks….(W. H. Auden)

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Gayle had been sick for years, but her demise was so slow, so painstakingly slow, that it was difficult to judge. She was always very soft-spoken, she talked with a delicate, hushed whisper, always. I always thought if she were an animal, she would be a beautiful young doe.  She was to me still  a beautiful doe, but now older deer and very sick. She wanted no visitors, no-one at all except for her beloved husband of 55 years who remained the love of her life. They wanted only each other through good times and bad; it seemed unimaginable, a love like no other. As you get older that there are not only few happy endings but none.

Her doctor has sent his nurse to their apartment once a week now to check her vital signs; that was the most he could do for her. Her breathing was labored, her muscles had atrophied, she no longer could walk. Paul, her husband, did everything for her; he carried her from room to room, he coaxed  her to eat a teaspoon of chocolate pudding, he sat near her when she was sleeping. He didn’t want her to wake up from a long nap afraid, her voice was so low he was afraid she would call for him and he wouldn’t hear her. He had workers come and put intercoms throughout their house. It made him feel better, to know they were installed even though she probably didn’t have enough strength to push the button.

One afternoon,after she was asleep, he went to his office for a few moments to pay some bills, to grieve for a few moments by himself. This burly, big-hearted man had become nothing but a shell of himself. Once burly and robust he was now thin, his face sallow, the light in his eyes gone. He rubbed his face with his hands, dried the tears, and a long, deep breath and slowly walked back into their bedroom.

He knew something was wrong the second he opened their door, he could sense it without seeing anything or hearing anything. “Gayle” he shouted, “Gayle, wake up” but of course, she didn’t.  He sobbed and shook her, his beautiful wife, cold and stiff, dead, like a tiny dead bird. He screamed, “It was just one minute, why, Jesus, why did you have to take her in those few minutes?” He laid down next to her and bawled like a child. This was a love so primitive, his only love.

He didn’t know what to do, he couldn’t do anything for a long time. He stayed on the bed with her, not moving, not being able to call their children or close friends.”Stop all the clocks, let time stand still, I can’t go on without her” he sobbed. He got up once, many hours later when it was dark outside. He tiptoed to his locked cabinet where he had secretly kept a gun that no one knew about. He got back on to the bed, next to his beloved and at some time in the middle of the night he shot himself in the head, and died next to her.

Nobody knew for two or three days; a concerned friend, after trying to call them for days, finally called the police. The police found them together, in bed, both dead, Life was not worth living without his wife, he had always said. He meant it.

My First Experience with Death

Grief Lasts A Lifetime

When I was very young my best friend Claudine and I sat on the floor of my bedroom and played with my two turtles. Apparently I injured the turtle ACCIDENTALLY. I didn’t know it at the time because my father played doctor and I remember the turtle’s frail neck had been wrapped with white bandages. He smelled like the red, antiseptic medicine that my mom used on my skinned knees. I don’t remember being particularly upset over the sudden demise of the turtle but I do remember that my dad, who of course knew it was dead, pretended to nurse him back to health, for me.
That same loving man, my father, died ten years ago. He died New Year’s Eve 2001 an hour before my parents’ wedding anniversary on January 1st. I remember that horrible night in excruciating detail, I was sitting on my bed and the phone rang and it was my mother. “It’s over, it’s done” she said and I sobbed for what seemed forever and grieved for a very long time. I still miss my dad, I will always miss him. Sometimes I do get messages or signs from him and I believe in that. How do you recover from someone’s death? You don’t. Not ever. There will be a new world for you and it will be divided into before the death and after. You are now a member of a new club for adult children who have lost a parent and it’s not a club you ever wanted to join. You have no choice. Intense pain and grief get less frequent with time but there will always be moments, at least for me, when the pain feels fresh and raw. I was in Targets six weeks ago and I automatically turned into the Father’s Day card section. I remember I stood still and openly gasped. I had to hold on to my cart to steady myself. Only then did I stop and remember I had no one to send it to. I didn’t have a dad who was alive anymore in the physical world. Tears filled my eyes and I left the store quickly; my eyes were so blurry it was hard to see.

Coffee vs. Tea

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Coffee And Tea

Mmmmm. In the morning, when I first wake up, I look forward to very strong coffee that either my husband makes or that I make. We generally use about 3 scoops for a large mug and it is aromatic and strong. It is not for the weak or instant coffee drinker. Generally, I mix Cafe Bustelo (espresso) with some sort of flavored coffee to balance the taste. I’ve had coffee from the grocery store, like Hazelnut Creme or Vanilla Creme mixed with Starbucks (as a treat) or espresso.

I have favorite mugs as well, mostly thin-lipped, some classic like a Starbucks mug, some entertaining like a cow mug or a yellow mug with a thumb holder or a bull mug my husband bought me in Malaga that has a top to keep the coffee hot. If there ever is a morning that I don’t feel like a cup of very strong coffee, I am sick. Very sick. When I am sick, with a sore throat or a bad cold, I drink tea with honey and lemon. However, for a stomach virus I drink tea with milk and sugar only. In the fall and winter, when my daughter comes home from school, we drink a cup of tea together. My favorite tea-cup is one from my friend Sarah, a petite, red and white flowery design that belonged to her grandmother. I feel honored that she gave me that cup with a box of English tea she loves and now, that I love. I drink that tea every afternoon; sometimes my daughter keeps me company and she drinks green tea. I love those times together.

For me, it isn’t a matter of coffee or tea, it’s both, for different reasons, different times and different lessons to learn. I gather my thoughts with one cup and yet another one calms me down, and of course, in the early morning, strong coffee, a hearty roast, kick starts and welcomes me to start the new day.