Same Old Pain, Now With Migraines

I’m used to the pain I have from Fibromyalgia, it’s not bad most days, no pain killers needed. Sure, there are a few days, mostly weather-related, that it gets worse but I can  stand that too, most of the time. It was under control until one day when I started having a headache that would not go away.

 

 

 

 

I’ve had plenty of headaches before mostly in the middle of my head and that’s how this one started so I thought nothing of it. I took Tylenol, the only medicine I am allowed  (Chronic Kidney Disease) to take, but it did not help. It was a mild headache for two days, I thought nothing of it.

Suddenly, the pain started crawling up on the left side of my face. It settled there like a jumbo jet that had just landed at the airport and was pulling straight into the proper gate. Passengers came off the plane then airline crew, the plane was cleaned and this baby was not going anywhere tonight. The headache had landed.

 

It’s hard to imagine I have another pain symptom but I accept it as my curse, this ugly life of mine. At almost 58 years old I now get migraines. “Welcome to the club” I mutter angrily under my breath, asking: “Why me?”

 

The first migraine, which ended me in the Emergency Room of the hospital moaning in pain and begging for a shot of something, anything, to relieve the intense, hammering pain happened a couple of months ago. “Nice to meet you, meet your new doctor, your Nurologist”.

I thought it was a one time thing, A visit to the Emergency Room, a shot and hydration and two days later I was fine. I went home where the lights were dim, I was safe in bed and all I wanted was darkness and no company, no radio, no television, just black solitude. I laid on my back and pulled the covers over my forehead, yes, this was my safe place, I promised myself the pain was over, gone for good.

Unfortunately, it came back with a vengeance twice more. Once a month ago and one two weeks ago.  I tried all the tricks, the medicine to supposedly make it go away before it really hits, a dark room, breathing slowly, ice, pressure points, Reiki, meditation….you name it, I tried it but it is clinging on to my head with traction and beating harder and harder.

It is now moving to the center of my forehead and the hammer is following after the movement, banging away, beat after beat rhythmically while all I can do is shut down and shudder.

Deutsch: "Kopfschmerzen". Die wohl b...

Deutsch: “Kopfschmerzen”. Die wohl berühmteste – stark von James Gillray beeinflußte – Arbeit in einer Reihe von sechs Blättern “medizinischer” Karikaturen, in denen Cruikshank Krankheiten als Teufelswerk brandmarkt. Erstmalig publiziert: 12. Februar 1819. Originalgröße: 210 x 255 mm (Photo credit: Wikipedia)

I know this isn’t fair, I know that life isn’t fair. I have accepted this new symptom because i don’t have a choice. It has joined the family of maladies that already exist, trapped in every limb of my body, from head to toe.

 

Since I was five I’ve always had a very low tolerance for pain, my parents used to tell me that. If one orange baby aspirin worked on other children to get their temperatures down, I needed two. I am still that way, believe me, it isn’t fun.

Recently, a friend told me to push my Internist to check more complicated Lyme Disease tests and I will do that. What are the chances? I don’t know but I will try. I don’t want to get even remotely excited.

Been there, done that, way too many times. I have no hope. I feel battered.

Enough already. This is getting old. Fast.

 

 

Loving The Ocean, Settling For A Lake?

Dear Fibromyalgia,

Another loss, another dream dashed, this one really hurts. All my life my dream was to live in a small house near the ocean. It was my fantasy, the one thing that I could think about when I felt a little down or when the Winter seemed unending.

Rainbow Waves

Rainbow Waves (Photo credit: The Uprooted Photographer)

Someday…I told myself, I will live in a beach house, and swim in the ocean. To me, the ocean is life, it is majestic, magical. It is the one source of pleasure I can count on, always.

Ever since I was a child my favorite activity would be to collect shells, to feel their shape between my fingers. What were the dominant colors? I used one as a “worry stone” others shaped like hearts I would give to my children. Another one with a little hole on top, I used as a necklace.

Seashell

Seashell (Photo credit: Moyan_Brenn (back soon, sorry for not commenting))

When I was hot, I would drift into the ocean between the two green flags and submerge my whole body and head into the oncoming waves. I was not a timid swimmer. I loved to jump wave after wave, it was thrilling for a scaredy-cat like me. It was adventurous and bold for someone scared to take chances.

In the water I was brave, confident, and happy. It was hard to get me out of the water but when I came out, usually under protest, I was out only until my swimsuit was dry, and then I went back in. I never had the patience to lie in the sun just to get a tan. Never. If I was in the sun for more than three minutes, it was far too long.

The beach was MY place. My secret place. I can’t even allow myself to have the fantasy anymore which saddens me. I have no balance and no strength since I got Fibromyalgia, seven years ago. My life was stolen from me, little by little. The last time I went into the ocean was in Florida, three years ago, with my daughter, and I couldn’t get up out of the water. I kept getting thrown under, again and again until I couldn’t breathe.

Fibromyalgia Eye

Fibromyalgia Eye (Photo credit: Vinally2010)

I needed her to help me get up. It took several times.

I lost part of myself that day and every day since. I know now that it IS a progressive disease, I feel it. I know with time I have gotten worse; my dream will never come true.

Beautiful, Tranquil Water

Beautiful, Tranquil Water (Photo credit: BrotherMagneto)

If I ever get to live close to the water it will have to be a lake but that’s not nearly the same as the ocean, not even close. Dreams die, health fades, burdens multiply. We cannot do anything else but accept. Accepting graciously is one option. I’m not there yet.

So, Thanks Fibromyalgia, you not only messed with my body this time, you messed with my dreams and emotions too. Way to go.

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Free Write Friday: Kellie Elmore

Rich Man, Poor Man

Rich Man, Poor Man (Photo credit: kcnickerson)

Name is John, most people around here call me Johnny D. don’t care much what people call me but I like Johnny D. better than John cuz it sounds less like Catholic school and more like my life now. I haven’t been to a church in years, not sure they’d want me anyways not with the life I lead. I live in the streets, and when warm it’s good but when it’s cold and snowing not so much. I huddle in doorways where people with their leather boots step around me, “hey don’t judge me asshole”, and sniff. So what if I smell bad, maybe you smell bad but they are just plain disgusted that a man could end up like me, living on the street, black garbage bag as my rent. What do they know, they know nothing, I’ll tell you. They judge me but they don’t know me, not one bit.” Hey, YOU, “I scream sometimes to get their attention,” I WAS you once” and then I take a long drag from my filter-less cigarette and keep laughing, that really makes em move fast, real fast.

Yep, I was walking in expensive, brown Italian leather shoes, carrying a briefcase and heading down to the city to a big- shot job. I made good enough money in banking until the world tipped over on its head and the stock market crashed like an airplane into water. Casualties everywhere, people drowning, hell, they were the lucky ones. I wish I had drowned but God kept me alive which to me was more punishment than having just killed me. I wasn’t lucky, I was cursed. I saw men and women who told me their plans to kill themselves with drugs and jagged lines up and down and across their wrists so they would get themselves good. They didn’t want to make no mistakes in dying.

So here I am, having failed at something I wanted to do. I couldn’t even die. Couldn’t even put myself out of my own misery. Well, shit, why I don’t know. People say it wasn’t my time to go, but I sure felt it was. I wanted to go so bad and not embarrass my wife and my baby girl and son anymore. They used to be so proud of their dad but now they referred to me as a “bum.” I was never any “bum” I was just down on my luck but my wife she didn’t stick up for me, not once.

Well, I guess she didn’t like the alcohol problem I was having and the drugs but I was trying to quit, I swear. She threw me out and that’s why I started living on the streets, not that I had too much of a choice.  Once or twice in the winter I stayed in a shelter for people like me, good people, until I got on my feet again. Just not on my feet yet. But, I will be soon enough. I’m determined to get help and walk straight up again, just need some good luck, someone to give me a break and a job. No, I haven’t been looking for a job myself but soon someone will find me and offer me a job, I can feel it. Then, I will get paid money, instead of collecting it here on the street with a cup, shave off my beard, change my clothes and stand straight and tall and go home so that my little girl can run and hug me and my son will jump on my lap and my wife will want to have me back because I have dreams. Aint nobody gonna take away my dreams.

walmart man

Photograph credit to photographers

Kellie Elmore and K. Nickerson

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Carry on Tuesday: “Run when you can, walk if you have to, crawl if you must; just never give up.”

English: a little shy girl Русский: ЗАСТЕНЧИВА...

English: a little shy girl Русский: ЗАСТЕНЧИВАЯ ДЕВОЧКА (Photo credit: Wikipedia)

She had always given up too easily. As long as she could remember, she chose not to fight but to deflate, like the air sizzling, slowly, out of a big brightly colored blue balloon. Why, she wondered now? Was it just her character or was she never able to feel safe and confident as a young girl even in her own home? It was hard to differentiate one from the other. Nature vs. Nurture?  Was it because she had  been six weeks premature and had to stay in the hospital for that long in a heated crib? She had always been a shy girl, an anxious one too.  Whose fault was that, she asked herself, in her older years. Surely it was not hers alone? Did her parents not think this was unusual enough to warrant some extra attention?

She didn’t like “playing board games”like Scrabble because there was no game that she thought she could do well in and she was easily embarrassed and ashamed. Had she dug right in, like others she knew and practiced feverishly, she could probably have been on top in at least one or two things but she never stayed long enough. It was a shame, she thought, later on in her life. No one had ever encouraged her to keep trying, it was almost as if they expected little so she gave them what they expected. She felt just like a tiny speck against a world made up of giant red rocks and icy mountain peaks, even large green valleys. She could disappear easily and no one would notice.

She tried to disappear one day when she was about thirteen or fourteen. Their family had a shared cabana at a beach club and one day she took off walking a very long distance and stayed away for hours. She wanted her family and friends to worry, to look for her, she wanted to be missed but when she eventually started walking back, and came “home” no one said a thing; they never even knew she was missing. She was upset, and mad that no one had even noticed.

She gave up all the time, but it didn’t seem like giving up when she was doing it, only years later, while looking back at her youth she figured out that she had been too scared, too fragile, too afraid to try new things. She gave up before she could fail; that was a very lonely and limiting life. She pushed boyfriends away before they became too close. She knew they weren’t serious, so she ended the relationship, knowing it would never be more than what they had then. She regretted that only once in her life but she didn’t have the emotional capacity, at the time, to communicate well.

Looking back forty years, she could see when her life had come to an emotional halt. It’s as if the brakes were firmly pushed and there she stood, alone and apart from most of her friends. Her husband still teased her about playing with Barbie dolls at fourteen with her friend, Linda. She was definitely a “late bloomer,”  her comfort companions were stuffed animals that surrounded her bed for many years. Even now, one or two are tucked under her pillow.

Now, as an older person, she sees the world in a different way. While physically she cannot run anymore, her mind jogs like the wind, as fast as possible. She is no longer shy and introverted but strong in her opinions and in her intuitive feelings. When she walks now, she walks with a brightly, colorful cane to help her balance issues but that does not stop her from walking, it fuels her with confidence, a confidence she never before had. Lastly, if she doesn’t like the sound of something she has written or a photograph she has taken, she will take another and another and not give up, until she knows, in her heart that it is exceptional and only she has to love it for it to be magnificent and divine.

Please, Mama

c. 1901

Image via Wikipedia

Don’t give up the fight, Mama. It’s okay to feel anxious but please don’t give up; don’t fall into the rapid hole of deterioration like a black funnel cloud gaining speed. What can I do to keep you from slipping? I will hold your soft downy hands with all of my strength so you don’t go anywhere and you have no choice but to stand up like a strong, red oak tree. I will not let you down; I promise. Have a little faith, accept the bad things that have happened and move past it.

Dad gave up but he had no interest in living anymore because he was so depressed. Do you remember? The light in his blue-gray eyes had been extinguished two years before. He was not the same dad that brought us up, the joking, warm, TWA company guy that took us to eat in the airline terminal. He was not the same husband that protected you and took care of you and adored you and your less than stellar cooking attempts.  You “cooked” mashed potatoes out of dehydrated flakes that you poured into a pot and heated with tepid water or with milk. Dad made his own concoctions for dessert: red, strawberry, glistening, jello mixed with canned fruit cocktail and yogurt. To top it off he added applesauce and rainbow sprinkles. He said you were his favorite cook bar none. No restaurant compared to your cooking; that was real love.

He became an old man who had difficulty walking, he shuffled and it was heart-breaking to watch. I was fearful anytime he walked up or down my three front steps that he would fall over. He refused to use a cane, or a walker, his vanity meant more than everything else. At least he had his dignity to the very end. I was lucky to see him when he was still fighting. I was there when the Doctor asked him if he would be “amenable to training so he could use a walker.” He looked up at her and said “NO, Doctor, I am not amenable to that at all!” I remember he wore his white down jacket with the bright red lining inside. I wore that puffy jacket for months after he died. I wear the chain he always wore for luck. I lost daddy years before he died, we all did.

I pray that you will bounce back, mom, and that the pain of the last six months will dissipate forever. You have fallen twice in a short period of time, you broke your wrist and your vertebrae and now we just want to keep your bones strong by taking the drug, “Reclast.” The “drug whose name shall not be mentioned” that gives you nightmares and anxiety attacks and too much fear. You had a vicious bout with a grueling flu that kept you in bed and dehydrated with high temperatures that confused your own doctor. She made you go to the Emergency Room, I met you there. You got through that, now, you have to work through the past to the present and the future. Think about your favorite occupation in the summer time, swimming in your condo’s pool with its chlorinated clear, blue water and the temperature of a warm bath. You will be surrounded by friends, and fans. You will hold court in the shade while people gather around you like the Queen that you know you are.

We all get older but I don’t want to get older without you by my side. You are the first person I call when I have any type of news. You are the one that tells me that beneath my emotional mush, “I am very strong inside, like steel” and sometimes I need to be reminded. Mama, be abrasive or demanding and unreasonable. Really, its fine. You can remind me that I should exercise more and get mad at your grandchildren for not calling often enough.

I am not ready, I never will be ready to give you up. I want to play “tickle fingers” on your hands like we used to do when I was a small child. I want to see the flirtatious woman I know, engaging with everyone you meet because people are drawn to you like moths to light.  Don’t forget our famous song by Helen Reddy: “You and Me Against The World.” I will sing it for you if you want but mostly I want to sing it with you.

Love,

Your Daughter

UPDATE: Hashimoto’s Thyroiditis and Fibromyalgia, 2011

Various pills

Image via Wikipedia

I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses  for over four years, with three different doctors and probably over 15 drugs in some combination or other.

I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.

Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.

Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the  brown overstuffed pillow.  The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.

I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number.  I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.

It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.

I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia  know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty,  and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.

The Lost Souls

I can’t stand the pain anymore;  I just can’t take it another second. I am having a hard time accepting that this is my life. I am not coping well today; I am not coping at all. Another day of stomach pain and too much sleep, no energy and endless trips to the bathroom, not leaving my home. Is it my long-lost enemy IBS revisiting me? Is it the side effect of the Cellcept that I am taking for my auto-immune disease, Hashimoto’s Thyroiditis? I don’t know, I really don’t know. I could easily start crying now, I just don’t know if I could stop.

I don’t know what to do and I hate that feeling, I feel powerless. I have no energy to fight or to make any medical decisions, minute or radical. I don’t have the strength or state of mind to start going to doctors anymore, again. What if I do nothing? Stop the medications and live like that? I’m scared. The medicine is supposed to be making me feel better and in some ways it does, except for the horrible side effects. Unless it’s a virus….See? There’s no way of knowing and I feel helpless, truly helpless.

People try to be nice, “Hang in there!!!” they write or say with heartfelt warmth. No. I can’t. I just can’t do it anymore. I’ve been pushed beyond my limit and I don’t know if there is a way to pull me back on board without me kicking my legs, punching fists in the air. I refrain myself from starting to scream obscenities like an absolute crazy person. I take an orange pill for anxiety, I drink a cup of ginger tea from a yellow ceramic mug. I droop.

It is clear I can’t continue to live my life this way. I’ve seen more doctors than I would like to see in a lifetime. Friends and relatives  yell out well-meaning ideas: homeopathy, acupuncture, massage?  There’s a doctor in Massachusetts, in Israel, two towns away? Try gluten-free, try vitamins, go to Dr. Weill, to this woman we’ve heard about in Brazil, how about the Mayo clinic for a minimum of $50,000 dollars and no guarantee?

I don’t want to talk about this, I don’t even want to write about it anymore except for the other “friends” who have painful and annoying chronic illnesses like me. They understand, they are the only ones who understand what it is like to live hour by hour. It’s not life-threatening, true, so we don’t get much sympathy but we have no lives to speak of.  What about us? The lost souls that linger in our beds, hoping for a surge of energy, a sign of life?  We are not part of the statistics because really, who knows about us? Who cares?   We are not in hospitals or reporting ourselves to the CDC.  We are not checking in to one specialty hospital because they don’t exist. We have symptoms all over the map, we are not just one disease. There are many, many of us who are unhappy, who are fighting each and every day ; we feel sorry for each other, because only we can understand the struggle, the fight, the emotional and physical pain that live with us just about every, single day.

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