The Emotional And Physical A, B, C’s of Fibromyalgia

Fibromyalgia Awareness

Fibromyalgia or any other illness combines physical symptoms AND emotional ones. This is a blog post that is not original. I just borrowed it from friends because that’s what friends are for! Here are mine:

A- Anxious, Aches, Achy, Anxiety

B- Bloated, Blue

C-Cramps in feet, legs, hands…etc, CURE??????? (not).

D-Depressed at times, Denial, Disapointment to others?

E-Embarrassed, (no) energy

F- Fatigue, Fibro Fog, Forgetful, Fat, FRUSTRATED, Fearful

G-Grateful it’s not life threatening

H-Hands that are swollen and ache, Hurt

I-Incomplete

J-Joint pain, joyous for a good (day, hour, minute)

K- klutz, I trip, I fall and I am uncoordinated

L-Lame, Limitations

M-Medicine, moody at times

N-Neuropathy

O-Oh what a pain in the ass this really is for all of us.

P- Pissed off, Pain

Q- (no clue or rather, qlue)

R-Realistic

S-Sad, Suffering, Savella

T- Tired

U-Unsure

V- Very tired, very frustrated, very much want carrot cake

W-Worn out, weary

X- Xanax for anxiety (the same answer everyone else gave!!!)

Y- Y? because I love you……

Z-zzzzzz’s for sleeping a lot

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The Map To Nowhere Fast

Chronic pain

Image via Wikipedia

I have a weird feeling of unrest and stress, slimy blue- green and flourescent orange winding its way around my brain is how I picture it, how I feel it. No soothing colors of white and yellow and beige. Fake colors, unnatural.  I frown more than I smile and as hard as I am trying to focus on the positive it’s not easy. There is so much going on in my life that it’s hard to focus. I don’t think it’s just me though, I think it’s a lot of people.  It’s a feeling, not a good one, somewhere between the roads of anxious and depressed, stopping at weary.

There are natural disasters all over the world and I am sure we all feel, not only heartbroken for other people, but scared. There is too much sinewy stuff whirling around and no happy place to settle. What happened to my “happy place” images? Why am I only seeing the rain battering the purple flowers instead of the blooming of the flowers alone.

There is tension inside my house, we are in “the sandwich generation” that I used to read about. It isn’t fun, it’s scary. The “baby boomers” who have restless teenagers and aging parents who are alone or ill or depressed. I am that “baby boomer” now except I have the added affliction of my own “chronic pain.” Fibromyalgia and Hashimoto’s Thyroiditis do not do me any favors, I walk along slowly, painfully, I stumble through different medications and expectations. Very low expectations.

I also have narrow-angled glaucoma which is a dangerous disease or as one unfriendly opthalmologist put it “you could go blind in an instant.” Quite a bedside manner, don’t you think? Needless to say, I stopped going to him. It’s funny that I barely write about this condition, maybe it’s pure, frigid fear. Maybe there is only so much pain I can handle. My brain and eyes get hammered, with laser shocks, every few months by a doctor that I once believed was very good. I don’t think so anymore. “In twenty years of practicing, I’ve never had a patient whose eyes kept closing up like yours do.”  Every time I go to the city he lasers my eyes again, because the hole he drilled into me has closed. He does this procedure either in his office or in the hospital with no pain relief; imagine barbed wire going through your eyes and brain, quickly, twenty or thirty times in a row. The eye drop he casually puts in gives me incredibly painful headaches (migraines?) I do know that the pain I feel is barbaric, no pain medications, no anesthesia, no break. Over and over again; fast and furious.

The gray, dreary day does not help me since I feel overwrought and unfocused. I am dealing with both chronic pain, (Fibromyalgia, Hashimoto’s Thyroiditis) and new back pain that feels like my back bent and broke itself during sleep like a twisted pretzel you find in any mall. I am trying to accept my life for what it is, both bad and good, often simultaneously. Change is in the air like a dog-sniffing a new scent, it’s just hard to predict when and where things will happen.

I read an article in the NY Times today about a young couple with a young daughter. Each parent has cancer. That, is a problem I say to myself, not the dreary workings of an often too-emotional, anxious and pain- filled mind. I am so sorry Nathan and Elisa. You and your baby have my prayers because perspective is the greatest gift of all. I will speak no more.

say narrow-angled glaucoma 5x fast on pain meds

Eye of horse.
Image via Wikipedia

my head is aching, laser like thunder striking inside my brain and down the right side of my face in a fast repetitive motion. don’t move, there, up, left, stay still. darts are being thrown directly into my eye by this rapid fire machine gun. a special hateful drop is given to me at the end for my shattered eye, throwing me, head first, down the crooked, chipped stairs straight to a migraine in progress.  doctor had to cut iris, no anasthesia and it was right near the nerves of my eye. lucky us fibromyalagia patients come prepared, had one old pain pill in my crusty, gray bag that has too many confusing pockets. the medicine did nothing. i have been suffering for too long,  in twenty years, my dr. boasts he has never had a patient like me before. i feel like i should at least win a prize or break down and cry uncontrollably. maybe both.

i am finally home in bed now but my right eye is glued shut and i am not allowed to open this eye tonight. i am cold and have winter blankets trying to protect me from pain and chills but they don’t do a great job, yet they are trying so hard. blame me, i cry, blame me. i am the arbiter of all diseases chronic and unknown and erratic, unusual, the  “rarely happens to……” it is not surprising that i don’t i feel special; tonight i have plenty of pity. problems with my eyes, ears, tmj, chronic pain, joint pain, foot pain, all the time. struggling not to become one with the symptoms but i feel like i’m wrestling with myself in thick, mixture of quicksand and mud. once in a while i want to just sink deep and let my breath come out slowly and simply float on top. i am tired of fighting, i’m tired of the pain.  i just want the pain concerto to cease playing. tonight i feel pain on my pain. if my head wasn’t above the blankets i would hide beneath them, though crying is difficult with just one eye.

who is this young stranger i ask from three feet and thirty years back. the one that used to shimmy in tight jeans and black leotards and confidence amid conversations of the psyche and e.e.cummings and the book review section of the ny times. i was a traveling girl until they clipped our wings; but most of all i was a dreamer.

my dog is sleeping peacefully on my feet. i woke up at 4 am today, perhaps with nerves but also with an incredibly optimistic attitude. optimism kicked me again in the face like a feisty pony named speed. i didn’t see the pain coming, speed kicked me from behind and sent me flying to the ground bruising every bone. every already aching bone and muscle.

i have all these strange, out of the ordinary afflictions but special is not something i feel. now i feel sad and sulky and in miserable pain. music which usually calms me grates on my raw nerves. stop complaining, i admonish, this is not life-threatening but it is painful and lonely as all hell. i miss my husband’s reassuring voice and soft, gentle hugs. i know i can survive on my own, always knew that, but it is nicer when he is there beside me, and not on a business trip, gently reaching for my hand. i miss normalcy if i even remember what that feels like.

i look forward to slow down the grumbling monster that is the pain in my head and shooting  down half my face. why am i not normal. why are there bizarre afflictions attracted to me like bees to golden honey. i am too tired to shoo them away because i have been robbed of energy. so they stay, circling me, viscious black buzzards landing only for their meal and my life.

Calling Epiglottitis A Bitch Is A Vast Understatement

Visible epiglottis at the back of the throat o...

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I have had epiglottitis twice; it is an ulcerated part of your epiglottis, below your throat, hidden in thieves. It is the worst pain I have ever had and I’ve had it two years in a row. Nobody knows what causes it, they think it’s a viral infection. As much as I have BEGGED for answers on how to prevent from getting it again, there are no answers. The doctors shake their heads kindly but have no information.

The first time I had it the ENT ( Ear, Nose,Throat Specialist) scoped me through my nose and saw it he literally said “How the hell did you get that?” Those were not comforting words to hear. I don’t know how I got it and I don’t know how I got it again. I just knew that this was the worst pain I have ever had. Childbirth was a breeze compared to this long, incredibly painful illness.

Has anyone out there ever have this monster of an illness? I’d be interested in knowing. The most my doctor could do was promise me to give me pain medication. If I could, I would prefer being asleep for the ten days that I have it. It makes sore throats seem like a cute tickle in your mouth. It feels like a hot, serrated knife butchering you every time you have to swallow.

Don’t come again, you mean and evil illness. I’ve had enough.

Lost And Found

Tulips from Keukenhof Gardens, Lisle, Holland.

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I haven’t been writing at all and I don’t know why. It’s always a bad sign if I don’t write. Now, I need to question myself, in public, about what’s going on. The past week has been filled with pain, intensely painful legs out of nowhere with nothing to help dissipate the pain. Tylenol, Advil, Aleve, even Tramadol which I have been taking twice a day. Of course, I thought, I jinxed myself when I wrote that I was “lucky”that my pain was less intense than some.  Past tense. Now I have a new pain that I didn’t think was possible and I don’t know where it came from or why it still exists. That new pain jolted me to a new reality and I hate it.

I’m bothered that my sister is my sister and not a friend I would pick and that the best friend I had picked has completely lost herself,  in her marriage and her children and has not resurfaced for years. The stress in the house has become unbearable at times, with my husband unemployed and a Junior and Senior in High School. They have essays to write, exams to study for, colleges to apply to, jobs, appointments, homework, studying. We all feel the stress around us, inside us, despite of us. My children and husband are what keep me going; I not only love these three people, I adore them. They make me laugh, they make me smile and when I was about to cry today, they knew it long before I did.

Yesterday I laughed so hard I had a stomach ache, my kids put up a fake unicorn tapestry to prank their father for going to the Cloisters. After dinner with our friend Janis from California we all ate chocolate, one with a spice called cholula. We laughed and gasped through the pain and I downed two glasses of Arnold Palmer lite iced tea and lemonade afterwards. I went to bed smiling, the laughter being a delightful and unexpected present.

The holidays are almost upon us and I start thinking of my dad, who passed away 8 or 9 years ago. Why is it that I can never remember the year he died? Not being good with numbers has nothing to do with it, it’s a mental and emotional block that I can’t seem to get over. My father was the buffer in the family, the diplomat, the peace-maker. Without him the rest of the family is a triangle of raw emotions.  I was the one who lost the person who understood me the most and who thought identically like me. There is a gaping hole in our family and as everyone who has lost someone they loved knows, there is nothing to heal that pain. It’s like a festering, open wound and once in a while someone tosses in a cup of salt every now and again. There is before and there is after. Your whole world changes forever.

My birthday is coming up and as much as I used to love my birthday this year it feels like a dull ache. I don’t care that I am another year older, I was never concerned with age. Whether I am 53 or 54 doesn’t mean much to me at all. I don’t hide my age and I don’t erase my wrinkled forehead. These fine lines come from experience, both good and bad, they are here to stay. Earlier today I was thinking of my “bucket list”.  The first thing that came to mind was a tour of the tulip season in Holland and snorkeling in  some Caribbean Island so I could escape the long, cold, snowy winters.

Life is short, I am trying to make it fun. Every day is a gift and I should appreciate it but sometimes I get swept away by all the negativity and I need to pull myself up and out of that empty hole in the musty, brown earth, inch by painstaking inch. I think I have found my voice again so after I dig myself out, I will be facing the sun.

Gray

Tropical Depression One upon being declared

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In my 200th post (ok, I missed it, it’s really 201) I look back at who I was when I began, and who I am now. Many things have changed, many have stayed the same.I ‘ve always blogged about different things: pain, joy, food, celebrities, loss, egg salad, Food Network, chocolate and people. I blog about whatever I want and I don’t hold back; today my life feels gray and dark and tumultous.

The first bog I posted was tentative and scared; the name of my blog itself (hibernationnow)speaks volumes. I was a frightened and sick bear cub that wanted to burrow under blankets and hide, away from people, from symptoms, from pain, from life. I’d had enough of various illnesses and I just couldn’t deal with it anymore. Since writing had  been a passion in high school, I decided to take a chance and try once more, I decided to blog on-line. For me, it was a very bold  first step; I hadn’t written anything substantive for more than 35 years. I started with one post, here I am today. When I don’t write in a while, like now, trouble is brewing.

Having  chronic pain  is not an easy thing to deal with because it in itself is so unforgiving.  I have to consciously say out loud  ” this is not my fault. ” I have also learned from my blogger friends that “pain is pain” and that I can’t compare my pain to others nor should I diminish it. I give this group of women in the chronic pain world a lot of credit, they will hold you when you need it and tell you the truth when you deserve it. From them I learned that my pain is no greater or no lesser than anyone else’s pain. I hurt, therefore I am.  I am now owning my pain.  These women in the chronic pain community have given me support, information and emotional good cheer. We keep each other afloat and when one of us is down, the others rally around with gentle hugs. If the world could be run by this group there would be no war.

In the past year there’s been hospitalization,  various autoimmune drugs (and their evil side effects)  asthma, broken ankles, fibromyalgia and a thyroid with the beat of a listless, dull, old  gray-blue pidgeon. I was so nervous about my last routine round of blood tests that I had a full-fledged anxiety attack and needed to take a Xanax  but alas I was too far gone and it didn’t help.

For the past three or four days I’ve had excruciating pain in the small of my back and in my legs. Sitting, standing, sleeping or walking, this is a whole new arena of pain that I have never experienced. What is wrong with me? Why is this happening? What’s the matter with me?  In this tumbled world of chronic illness I don’t know where this particular pain is from. Is it a side effect from the medicine? Is it a pinched nerve? Is it something new and horrible?  Inside, you groan, “oh no, not again….” and still it continues. I am feeling depressed and ill at ease; I am now a stranger in my body and also, my mind.

My husband of 22 years has been unemployed for more than a year now. I’ve handled it well until recently but I think I am at a breaking point. We have a son who is a senior in high school and a daughter who is a junior in high school. The stakes are high at the moment, there seems to be a new challenge every day. There is chaos on top of chaos.  I’m trying hard to hold on but I can feel myself slipping. Perhaps my new pain is telling me to breathe, to slow down, to let the stress go. I’m trying.

I am in the eye of the storm and the world is whirling around me and I am stuck in the middle, unable to move, wanting to scream out but being incapable of screaming. There are so many things to do and so many emotions that it feels overwhelming.    I am stuck in pain, in conflict, in existence; I need to breathe, to find time to breathe and sit with music as my therapy and Advil by my side. Soon, I will ask for help.