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

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

The Map To Nowhere Fast

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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.

My Spring To-Do List

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There are beautiful yellow forsythia blooming, an occasional purple crocus, the beginning of grass seeds growing. There are rain showers all the time, gray skies, rain pelting down from the sky like rock stars playing and dancing along with their jumping guitars.

I always have the same thing on my spring to-do list: cleaning, getting rid of the old, broken stuff, the clutter, the sentimental memorabilia that should not be sentimental anymore. Keep the memories, but get rid of junk, plastic gadgets, piles of magazine articles, painful shoes. Old toys and old clothing from my teenagers should be given away in black trash bags to be picked up by Big Brother, Big Sister. I need to declutter my brain, rid myself of the layers of thick, molten dust both on the furniture and in my cloudy head. I need to get rid of so many things so I will be able to move ahead, in my mind and in my life. My children are not little anymore, they need me much less, soon they will be off to college. I don’t want to be here surrounded only by old memories, I need to make new memories, not cling to the past. I need to emotionally accept the difference and move on.

If I Had My Own TV Show – fiftysomething

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If you are old enough to remember the show “thirtysomething” I would have a show called “fiftysomething.” I don’t know why it hasn’t been done before. This would be a realistic show that would deal with the ‘sandwich generation” all of us aging baby boomers. It would feature our kids, our parents and the loss of our parents. How the economy affected us. Life. Children. Divorce. Being wIdowed, still being single. It would deal with life, giving us a sense that we are not alone, that we all have to suffer through these things and it would be based on real stories and with much-needed humor. Because if you can’t laugh about all this aging crap, you just have to cry!

The Donald, Oprah And President Barack Obama

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I am not the only one who feels stressed out. It seems the world is in a very stressful and sorry state. Not just in our country (The USA) either, it seems that everywhere there are horrible natural disasters, wars in different countries, debt, unemployment and no hope for the near future. Instead of asking President Obama for reassurance, which I am sure he would love to do if he could, I’m asking Oprah for her take on the situation. I trust HER.  Oprah is the only person I want to run for President because I believe in her. So, right now, in the middle of many world crises, I choose her. I pick her. I want her to tell us that things will work out and that the karma that really goes around comes around because unfortunately I’m starting to doubt that. I’m just not one hundred percent sure if that really is true anymore but if Oprah proclaimed it to be true, now, I would become a believer again.

I saw Donald Trump being interviewed by Meredith Viera today. I was absolutely speechless but The Donald certainly was not. Even the looks and grimaces on Meredith Viera’s face were newsworthy. She was practically spitting at him. The Donald was saying that he is pretty sure that “Barack Obama” is not a United States citizen. Again. WHY, Donald, why? You were so emphatic on the show today that even I, an avid Barack Obama supporter, started thinking that maybe there was something behind that. (Did I just say that?)

I’m beginning to fear for my brain. If I am actually starting to question my judgment about President Obama that is a very scary thing. So, I will not be listening to Donald Trump anymore (except on The Celebrity Apprentice) and I will continue to try to have faith in this Administration. It isn’t an easy job, and we know what shape the world was in when the President took office. But still… I need some answers, I need some faith, and I need some hope and the only one who could possibly do that now is: Oprah. Oprah Winfrey for President of the United States, 2012. I’m in.

What's Worth Waiting in Long Lines

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I’ve waited in line ONCE for over an hour but it was for a restaurant and worth the wait. I’m a true foodie but I would never wait over an hour again. 15-20 minutes tops at the most. Other than food,here are the three things I would wait in line for:

1) Oprah

2) Oprah

3) Oprah

Carrot Cake Was NOT Just An 80’s Thing, Was It?

Image by Pen Waggener via Flickr

Hubby and I went out to dinner last week and as we looked over the dessert menu (after all, isn’t that the reason I go out to dinner?) I realized that certain important items were missing from the menu. There was no carrot cake, cheesecake. vanilla cake. Or any cake except a dense, all dark-chocolate cake. No pies. Just passion fruit crème brûlée,  a brownie with vanilla ice cream, a root beer float (really? that is a beverage to me) and fresh fruit in season, (LOL) and Nutella in pastry shells. I have a big jar of Nutella at home in the closet and with a teaspoon (or 5 teaspoons) to eat right out of the jar it costs a lot less than the eight dollars THEY were charging. I had just baked brownies for my kids and husband so that was out of the question, vanilla ice cream was safely nestled in the freezer. I had been dreaming of carrot cake, cheese cake, vanilla layer cake, coconut cake but there was nothing.

Carrot cake, to me, is perfection. It is a blend of sweet, salty, crunch and creamy. I’m not a huge fan of cream cheese frosting but hey, its frosting and it is vanilla-ish so that works for me. My husband in his loud, convincing voice said: “carrot cake was just an 80’s s thing.”  Excuse me? I don’t think so but he kept telling me that we don’t see it on dessert menus very often and I just assume that we’ve been going to the wrong restaurants.

Was carrot cake a cult thing? Like a flash in the (cake) pan? Do I need to find my leg warmers and leotards and watch “Flashdance” on the, (gulp) oldies station? Look at denim, that’s been around a long time and I doubt that’s going anywhere. I don’t want to think that carrot cake is not available anymore and please don’t suggest I make it because I don’t have the patience or the talent for all the chopping, mixing and whatever 52 steps it takes to create it.  Also, it’s no use saying “don’t order dessert” because that is totally irrational.

If I can’t find it in a restaurant I really don’t want to buy a whole cake. I don’t want a whole cake of any flavor in my house, from a bakery or Costco or the frozen section of my local supermarket. If there is (non-chocolate) cake, I will eat it.   Please, don’t let me buy an entire carrot cake or cheesecake because I am the only one in the family that will eat it and I have given up on portion control or rather portion control has given up on me.  I will have to scour every bakery and grocery store to find a place that serves these delicacies by the slice. I’m just not sure if I can be trusted to only buying one.

Snail Mail

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WHEN THE WORLD WAS A BRIGHTER PLACE…..

 

I sent a handwritten letter with photographs of my children to a wonderful man, earlier this month. We adore this gentleman and I dubbed him The Sheriff, many years ago when we lived in a small suburb of Boston. The Sheriff, and his wife Louise lived down the hill from us on a cul de sac. My children were young, 2 and 4, back then and The Sheriff was very much a part of our lives. He invited us to his July 4th bbq where my daughter sat on my husband’s shoulders, seeing fireworks for the first time, covering her ears and screaming. The Sheriff was invited to my son’s fourth birthday party and he arrived bearing a plastic green dinosaur that still lives lovingly in our basement; I cannot part with it.

I received a letter from Mr. and Mrs. Sheriff last week thanking us for the photos. The Sheriff was so touched we remembered him and that we still thought about him after all these years. We had kept in touch, though not often and once we even paid him a surprise visit but it had been a few years since we had communicated.

The two and four year old little kids he had known were now 16 and 18. When the children were young I bought a Sheriff’s badge for him and he wore it proudly; every time we ran into him he had it with him. It was plastic and silver and if it wasn’t attached to his shirt, he had it in his pocket. I know in my heart, he still has it, tucked away somewhere, in an old green address book or in the corner of a dusty bedside table. Even if it is missing in action he would never throw that sign of honor away. If we never saw him wear that badge again, he will always be The Sheriff to us, the one person who made the whole neighborhood “home.”

Dedicated to George

say narrow-angled glaucoma 5x fast on pain meds

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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.

Where I Go for News

Channel Sunshine

 

I would assume that MOST people would take this as “the news” so the internet might be a choice, maybe breaking headlines during one of my yummy television shows like Grey’s Anatomy or Brothers and Sisters or Modern Family or even Parenthood or….I think I’ve said enough. When I have bad days from chronic pain from my Fibromyalgia and Auto-immune disease, I tend to watch a lot of television. I know. My bad. But, I will not watch “the news.”I will not watch any channel for the news unless it is absolutely necessary. Honestly, I get too overwhelmed, too stressed, too sad and mad and I am left feeling completely helpless and extremely anxious.

Bad personal news, however, should always be prefaced by a “Honey, I need to tell you something” or “I have some bad news” even “I think you should sit down.”This should only be done IN PERSON. It makes my brain prepare myself for something that I know will be unpleasant or upsetting, generally both. There doesn’t seem to be a lot of good news going around right now. Here are more television analogies: Oprah, to me was good news. Ellen, funny, warm news, Rosie, straight shooter and wonderfully pro-children, pro-democracy, pro-truth and yes, a little pro-nutty but that’s perfectly okay with me.

Many years ago I used to watch the news at night; not a chance anymore. I couldn’t fall asleep after hearing about all the tragedies and the deaths, murders and dismemberment that the newscasters would cheerfully declare. You always find out the bad news, it’s the good news that should be broadcast. Life is too short, we know the bad stuff, that spreads quickly. Good news? That, should be on it’s own special channel, MY channel, broadcast and celebrated everywhere, every day, even every hour throughout the country, throughout ALL countries in the world. Don’t you think it would make for a better day? I do.