Friday, April 27, 2012

Why Are You Complaining?

Last night I laid in bed bitching to my husband incessantly about how horrible I felt. It rained and wow did that do a number on me. "Oh my God my head is splitting. My sinuses are engorged and I feel like my face is weeping. My eyes don't look like a character from Japanese anime, do they? Man they sure feel like it. It's like my lower lashes are hitting the bottom of my cheekbones! My sacroiliac is frozen and killing me and the pinched nerve in my neck is shooting pain down my arm in pulsing waves," I finished, feeling I had appropriately briefed him on the many points of misery I currently suffered from. It was not the first time this evening I had done this.

But then I heard myself. It was like I floated up to my bedroom ceiling and looked down on the dynamic unfolding in complete objectivity. "You must get so sick and tired of hearing me complain!" I exclaimed with enthusiasm. "That is all I do. How can you stand it? How can you even be around me," I asked him, disgust rolling off my tongue. "Well that is not all you do," he said with a tease. "It used to be a lot worse." But I had opened my mind up to his perspective and needed to sit in it a little while before I could imagine what I would do if the tables were turned. What if he complained to me as much as I complain to him? What if he was always sick, an emotional roller coaster and when I came home each day never knew what person was going to greet me at the door, or if they were even out of bed? I can barely stand it when he comes home in a bad mood, for I want to fix whatever ails him at any cost.

After examining this I concluded it is the need to be understood that causes my incessant ravings about painful symptoms. I don't complain nearly as much to my friends with Fibromyalgia because they already know when I utter the phrases, "Can't sleep" "Headache" or "Rain," exactly what I am going through. And one would think by now my husband would know, too. Which he does. So what exactly is my bleating all about, then? During deep reflection while I played that stupid cell phone bubble game I discovered two causes. One is a constant need to remind those who are not physically suffering with me that although I look fine and dandy, I am oh so not. And the other is guilt. Argh! Still that damn guilt. Because my health problems have ruined every plan we dreamed of or expectation we had and I feel terrible about it. I am still bearing the burden, even though I know I am not to blame, I still somehow am. But I declare enough already! I gotta move past this phase, this need for approval and acceptance I am so desperately seeking as a way to assuage my own conscience. I want to improve my circumstances, not stay stuck in them! Life is what it is. Que sera sera, whatever will be will be. It comes with no guarantees. We do the best with what we are given, that is all one can do. And really didn't Al Pacino say it best in The Devil's Advocate while speaking to Keanu Reeves? "Guilt is like a bag of bricks. All you gotta do is set it down."

Thanks for joining,

Thursday, April 26, 2012

If I Knew Then

I happened upon meeting a young lady the other day. A mutual acquaintance set us up because this girl, let's call her Jane, hasn't been feeling well for a couple of months now. Our friend assumed I may have some advice to give so Jane and I went to lunch. As I watched this darling girl tell me about her life, her symptoms and her concern I couldn't help but remember myself at her age. In large part because she is the exact age I was when I got sick. Twenty-eight. No stranger to her list of complaints, I could not help but wonder if I had "pre-cursor" symptoms to Fibromyalgia I ignored before actual onset of this horrible illness? Alarms my body was clanging to get my attention, but I ignored because I was too busy living life. Who would have known back then, that this was to come? 

As Jane told me about her job and planning her wedding, her lethargy and rapid weight gain, I wanted to scream at her. I wanted to jump up and down and stomp and bang pots and pans and clang symbols and beat bongos or do anything else to get her to take notice. I wanted to shout "Pay attention!" at the top of my lungs. Scream at her to eat her vegetables and get eight full hours of sleep every night. I wanted to drop onto my knees before her and beg and plead with her to educate herself on matters of health and wellness, and to not take one precious moment of her vitality for granted. Tell her how bad life with chronic illness sucks and if there is any way to prevent it, do it! But short of scaring the girl or coming off like a complete lunatic, I could not do any of this. 

But I wonder. If I had known my whole life long, or even just a few years before, sickness was to one day consume me, what would I do different? Would I have stopped to smell the roses or taken a drive just because it was a pretty day out? Not stressed about money, knowing true financial devastation was on its way but not yet here? Would I have stayed all those extra hours at work investing in a career that went up like a puff of smoke once I got sick? Or fought with my husband less, and over far more important things? Criticized my criticalness instead of my own self? Would forgiveness and acceptance have played a more prominent role in the way I conducted my affairs? And would I ever have learned life is about what you give, not get? 

So with all honesty I answered myself. I think no. I don't suppose I would ever have slowed down on the train track I was speeding down, taken a look at the bigger picture, the fundamental truths of life. Why would I? It took losing it all before I could grasp what it really meant. Working so freakin' hard for every inch of my quality of life before I understood how precious it truly is. The only way I got here was to live my life, fight this fight, walk the walk. Sadly there is no way I can save Jane. I could tell her little more than to get her thyroid checked and take her vitamins. And to pay attention to her body, because it wants to be healthy so if it is telling her something, listen to it! The rest is up to her. And I can't go back in time and save myself either. Do it all different, with more caution and care. A premonition of things to come slanting my vision, tainting my trajectory. That is just not how life works. So forward I go, making the most of what I got and finding gratefulness in my heart. For there are still plenty of roses to smell and drives to take on a pretty day. So much love to share with those who love me. And when life hands me a bowl of lemons, plenty of kick ass margaritas to make before I call it a day.

Thanks for joining,

Tuesday, April 24, 2012

Lilac, Mulberry and Amethyst

One day a friend mused she wished we had a code to communicate how we feel, since as any Fibromyalgia patient will tell you there is no continuity or routine to this illness. On Monday we are convinced Fibromyalgia is gone, an over-exaggerated figment of the imagination. Why on earth did we take it like such wimps? But not on Tuesday! On Tuesday morning we wake up with absolute certainty we are dying, no pain that great could possibly signify anything less, and we remember. Sick and tired of complaining about her sick and tired all the time, my friend needed a way to communicate her pain without, well, bitching all the time. I thought she was on to something and set out to come up with a "code" which would accomplish this goal.

The Fibromyalgia awareness ribbon is purple. Purple is a traditional color of royalty, the hue of the Crown Chakra which is linked to the crown of the head, nervous system and brain. It is representative of pure thought. The Purple Heart symbolizes courage in the U.S. military and pride in Christianity, to name but a few associations. A blatant blend of blue and red, it embodies the yin/yang of stimulation and calm while assuming an enlightened and distinguished reputation throughout history. Psychologically purple is known to uplift and calm the mind and nerves, reputed to offer a sense of spirituality and encourage creativity. We are in very good company with the color purple!

Using this color as an anchor I allowed my mind to absorb purple in its infinite number of shades, tones and hues. I traveled through this imaginative exercise and my instinct rang the lighter the color, the lighter the symptoms, and the deeper the color, the more raging the pain. So I painted a pretty little picture in my mind of Fibromyalgia if it were viewed through a purple kaleidoscope. Lilac starts out soft and light, and represents a pretty darn good day. Mulberry deepens and intensifies moderately and marks the middle of the road. Not great, yet not horrible either. Amethyst, one of the deepest shades of purple, finishes the journey with raging pain and unbearable afflictions. Well the idea stuck, and even became a source of motivation. Patients were genuinely trying to figure out how to get themselves to Lilac! Proud to report a day of reprieve they were also understood when tearfully admitting to Amethyst, a day of defeat. 

Too complicated! I won't spell them right! I can't remember that! I have Fibro-fog! Oh plenty objections certainly abound initially. But there is something off-beat, individual and just plain silly about comparing the wreckage this illness has made of our lives to flowers and gemstones. It somehow removes the ownership of the pain and forces it back on the illness itself. But please, by all means, do not blame the actual Amethyst stone for your pain. In fact I think Amethysts should be our pride and joy! A jewel all our own to wear with pride. Display our victory, the triumph over every Amethyst day from hell behind us, or those which will someday come.

Thanks for joining,

Friday, April 20, 2012

The Fibromyalgia Crusade

I am launching The Fibromyalgia Crusade! I am a Fibromyalgia patient, not a doctor, scientist, researcher or PhD. I am a real woman living a real life with a real illness which receives little to no respect or understanding from the world at large. In 2005 I became ill and have devoted my last five years to overcoming the debilitating and miserable reality of living with Fibromyalgia. My medical history is complex. My journey fraught with as much failure as success. I worked harder than I ever did for anything in my life to regain quality worth living, and am amazed to say not only do I survive, I thrive! But my heart is breaking…

I started this blog last March. It was a way to dissect and digest how life deposited me in the strange and foreign land I resided. I also dream of a career as a writer, and used the blog as an outlet to exercise those skills. But I was private, unsure. Embarrassed by the truth of my reality I kept it to myself, all the while progressing emotionally and physically in leaps and bounds. Slowly I begun to unravel the tangled ball of yarn my life had become and see some real progress. But my life being my life, at the end of July I had two strokes. Came within a hairs breath of death, but survive I did and with treatment I will live. High on survivors life I woke up. A renewed responsibility to my fellow man, Fibromyalgia patients specifically, was born inside me. I stopped caring about acceptance or judgment, going public with very intimate and private details of my life. Utilizing Facebook and my blog, I reached out to other normal everyday folks trudging through the grim and dismal misunderstood darkness that is each day when one lives with Fibromyalgia.

The response is overwhelming! People are crawling out of the woodworks to join up and gain support, a sympathetic ear, shoulder to lean on who truly understands how awful life is when one is forced to live sick in a world of healthy expectation. We are knitting together into a viable network of Fibromyalgia patients. All singing the same song, just to a different tune. As I became aware of story after story following the same devastating outline I found rage. Too much loss and suffering and ignorance surround this condition. With every beat of my heart I want to change the reality of living with Fibromyalgia. Take it from a doubted and questioned condition and give it the validity it deserves. I want to make people recognize the suffering and loss and devastation is indeed real, as real as the air we breathe. I believe when thousands of Fibromyalgia patients come together and stand strong as one clear voice it can be done. If Fibromyalgia has touched your life, someone you love, someone you know, join The Fibromyalgia Crusade. We can change the reality of living with this disease from one of devastation and loss to one of support and understanding, but only if we band together. Come join my army, for we are going to fight, and we are going to win!

Thanks for joining,

This blog was originally published on 9/5/2010. With gratitude to every person who has become a part of my Fibromyalgia world, I credit the success of our awareness campaign to you. Each person you stand before proud and tell you have Fibromyalgia, every doctor you fire for not "believing" you, all the mornings you get up to fight through another pain filled day, you are getting us there. Slowly but surely, step by step. We have not won the war yet but Rome was not built in a day and we are building!

Thursday, April 19, 2012

It's Not Me, It's You

Back in the days of yore before I got sick I was a big bad manager in department store cosmetics. It was a tough job, balancing the joy of pleasing both my bosses and employees, whose interests were usually not aligned. And quite frankly working with the general public on a service basis, while frequently entertaining, was no picnic either. One of my greatest challenges lay in my ability to boost the morale of my troops and spur productivity without badgering them to meet sales goals. A proactive and positive "I can conquer anything" attitude worked best. Even if I had to fake it.

Sadly time and time again my employees would come to me in tears. A meanie just yelled at them, or was degrading or condescending in some other way. Rude, uptight or miserable, they would hurl insults, stomp their foot as smoke poured out their ears or mimic a pressure release valve with angry puffs of air. It can be quite upsetting when someone treats you that way, especially so when for the sake of job security you can't tell them to stick it where the sun don't shine. So we had to learn how to not take these assaults so personally. Through much trial and error I discovered the way I was treated had very little to do with me. It had a lot more to do with the customer. If they were generally mean, they were mean to me. If they went through life yelling, then they yelled at me. If they got their way through aggressive rude behavior, they were aggressive and rude to me. So with logic overriding emotion I set out to share this perspective with my fellows in the hopes they too could stop taking ugly behavior personally. 

So yesterday as I am listening to the umpteenth tale of how friends, family or doctors just don't believe a person with Fibromyalgia is really sick, it smacked me across the face. Perhaps this has a lot more to do with them than it does us? Think about this here. Sick is inconvenient. It creates more work for the healthy when we can't do what we once did. Especially sick which never goes away. A doctor with a God complex who can't fix us may feel justified in blaming the patient or telling us we are nuts as a way to compensate for their lack of success. A boss who needs the overly-productive type-A person we once were may fail to show compassion or empathy because yet again, they depend on us but that person is no more. If you were daycare for your grandchildren and no longer can be, your kids may be mighty pissed off at the wrench this has thrown in their path. Think about the relationships in your life that hassle you the most. Those who spend all their time convincing themselves the problem is you, not your disease. Are they happy and at peace with themselves? Are they stretched too thin? Are they so self-absorbed to never even try to understand what life is like for you? It is much easier to judge than walk a mile in someone else's shoes. We are given a tall order my friends, surviving a very real illness still a mystery to medical science. It is not made any easier by those we need desperately to believe us who simply don't. But just for a moment try and allow intellect to override feelings, and assess the situation objectively. And then ask yourself to consider the source.

Thanks for joining,

Tuesday, April 17, 2012

Will Myself To Health

Oh I have got it bad. I have got it really bad. You know that phase chronically ill people go through where they decide to stop fighting the illness and start ignoring it, convincing themselves it is not as bad as they are making it out to be? Well, that is what I have right now. I have been going through this for a couple of weeks now. Unfortunately each time I try to "push" through Fibromyalgia I wind up crashing and burning like a helicopter struck by lightening. 

Last week I declared myself a horribly incompetent housewife and decided to change. I cleaned my house from top to bottom again, this time even shampooing the carpets, and vowed to keep it up. I plastered a bitchy note on my front door to remove your shoes before entering my domicile and sprung up like a morning glory every time a dirty dish was ready to go into the dishwasher. I folded and put away laundry when it came out of the dryer, didn't pile it up for weeks to look at and feel guilty about. I did everything a doting homemaker is supposed to, every inch of my being rebelling against me. And then I woke up this morning not wanting to wake up. I had a headache and a sick taste in my mouth. My chest was heavy, throat scratchy and sinuses throbbing. I buried my head under my pillow and mourned.

I don't want to be sick anymore! I am over this already, damnit! I cannot live life this way. I cannot set a schedule or stick to any routine. I can't have a life, accomplish a goal or complete a task. After flogging myself for a while I calmed down. With startling realization it became incredibly clear I am subservient to Fibro, my needs always coming second. This made me mad but also gave me some grace. I have tortured myself enough to know, once again, I am not making this up, blowing it out of proportion or completely delusional. I am seeking out that place of acceptance and peace so necessary to survive living sick. Slowly but surely I am making my way back there. Battle with self number 7,398 completed and behind me. As this has come up before I am sure it will come up again. I just wish me today could tell me then to be nice to myself. That would make this whole cycle so much easier to take.

Thanks for joining,

Friday, April 13, 2012

The Day I Forgot How To Spell My Father's Name

When I was at my worst, sick and miserable, floating around in pain, anguish and a severe fog of confusion, something happened that damaged my faith in myself. I was having serious cognitive problems, and not just the "You are getting older" kind. Frankly I was 29 so in retrospect was not old at all. But I frequently didn't remember what I was doing while I was doing it or where I was going while I was going there. I would be driving down the street from my house and suddenly have no clue where I was, and poor Yorkie was left on the wrong side of the front door more than a few times. Well one night I got into an argument with my husband over how to spell my father's name. Honey pie was laughing but I was getting mad, insisting it had two L's while he said it had just one. I finally gave in and called my dad who informed me in a bit of a surprised voice it did have only one L indeed. Damnit, my husband was right!

I hung up ashamed, speechless, hanging my head. My husband could see how upset I was. For who in the world forgets how to spell their father's name? Maybe if he was just a sperm-donor daddy that was never around, but the man that raised me? That was a dark low in my CFS/Fibromyalgia journey and I am glad to say with the occasional exception of forgetting why I walked into a room (okay maybe more than occasional) or losing my train of thought (usually off on a tangent anyway) I am relatively clear headed. There are so many basic things this disease robs a person of. So many fundamentals of life that are taken for granted until we just can't do them anymore. Chop an onion? Sleep? Work? Do the dishes? Drive yourself to a doctor appointment? Pick up your child? Oh the list goes on. And to top it all off the world at large, fueled by sweeping numbers of the medical community, doubt us. Tells us it's all in our heads, treats us like a junkie or mental case or lazy free-loader. 

Well I have had it! Meeting large numbers of Fibro patients through this blog shows me these are not problems unique to the individual. A great many patients are all singing the same song, just to a different tune. Details vary; geography, additional ailments, race, religion, marital status, socio-economic levels. Oh Fibromyalgia does not discriminate, she is an equal opportunity invader. But many patients are afraid to speak out, can't take judgment from the world at large. I was one of them before the strokes shocked me into action. Made me not care anymore about what anyone thinks of me, my drama, struggles or journey. We need real help. We need a charge, a General to lead us to war, the war of informing the world we are real people who are really suffering. There are enough of us out there helplessly watching our lives crumble apart, completely vulnerable and unable to do anything about it because we are so sick. This is pure insanity and something has got to change. We have to band together and do something about this. It really is just enough already. 

So hang tough with me friends. We are not going to sit back and wait for justification from a reluctant medical community. We are not going to let big-pharma be our only voice as they heavily advertise the miracle of their "drugs" that only mask symptoms and many of us cannot afford anyway because they are too darn expensive. We are not going to keep losing our homes and families and security and health care and quality of life to this nameless, faceless stranger that won't kill you but leaves you rotting like a living corpse, wishing you could just die and get it over with. Each and every one of you I have come into contact with have sparked tiny little embers in me, and now the brush is smouldering, the twigs are starting to burn and pretty soon the bonfire will be raging. When this lioness gets pissed heads roll...and I am really pissed off.

Thanks for joining,

This blog was originally published on 9/4/2010. Prednisone is know to induce bravery, or what some would call delusional rantings, among other things. But that anger kicked me into gear and this is why we are standing stronger than ever today.

Thursday, April 12, 2012

The Night I Almost Stopped Breathing

One hot summer evening, a dozen plus moons ago, I suffered the horrible misfortune of a sleepless night. Now being a seasoned Fibromyalgia patient, insomnia is no stranger to me. But this was something all together different. I knew exactly why I could not sleep. I was on high-dose Prednisone to treat my strokes and spinning around like a crack-head. The only way I could sleep at all was by taking Xanax. But for whatever reason she was not doing her job that night and I laid there in bed, thoughts whirling, tapping my foot anxiously, totally wound up. And extremely jealous of my snoring husband lying next to me. I didn't want to take too much Xanax, for obvious reasons, but I had an important day ahead of me and needed to sleep. I prayed, counted sheep, actually got into the 50's going backwards from 100 before I realized that was only stimulating my brain even more.

So I broke out the Valerian Root. Well that didn't work either. A little more Xanax, a little more Valerian Root, the clock spinning its dials into the wee hours of the night. Frustration mounting like a lion ready to roar, I kept on this way until finally it hit me. All of it, all at once. I felt myself doze off and jump awake as I stopped breathing. Oh no, I panicked, I have taken too much! What on earth was I going to do now? The pull of slumber I had been desperately praying for was strong, but I was over-medicated and each time I dozed off would jump awake with a start, gasping at breath. I propped myself with pillows so I was sitting up, said a big fat prayer and went to sleep in a vertical position. Somehow this seemed a logical remedy at the time. I was a very grateful woman when I woke up the next morning.

A little Googling informed me I should NOT take Xanax and Valerian Root at the same time. They are contraindicated, meaning not to be taken together. My breathing had slowed because I had depressed my central nervous system by taking too many central nervous system depressing substance. And this here brings me to my point. Many of us rely on prescriptions, supplements and herbs to manage our Fibromyalgia symptoms. When a person has a lapse in health insurance, horrible side-effects from a medication or a hard time finding a doctor to treat Fibromyalgia, supplements may be all they have access to. But we have a major responsibility to ourselves to be educated and knowledgeable about what we are putting into our bodies. I know personally when I run out or skip my supplements I get sick. I need them. Doctors are starting to pay attention to key nutritional deficiencies in the body like calcium and vitamin D. But it is the way we take them, what we take them with and how often that makes all the difference. And in seeking out this knowledge we can often find other things to help, too. But please friends heed my advice. Whatever you do, don't take Xanax and Valerian Root at the same time!

Thanks for joining,

Tuesday, April 10, 2012

Race Through The Week

Well if I didn't push myself into a big fat flare last week then I don't know what. It all started with me somehow convincing myself managing Fibro was as easy as, well, mind over matter. The voice of Leah past told me in a very firm tone if I just pushed ahead and ignored the pain I would be fine. The progress of order and accomplishment would provide a much needed analgesic for any repercussions I would feel. Wherever she came up with this idea I just don't know. But on Monday I cleaned my entire house, minus my office of course, top to bottom. Both bathrooms, dusting, organizing, fluffing pillows, shaking out rugs and vacuuming. I even swept the patio and moved around some very large potted plants. At the end of the day I hurt. But I was determined to stick to my new schedule! So Tuesday I got up and ran, then jumped in the shower and high-tailed it over to the coffee shop around the corner to exist among the land of the living while I wrote. Well the thoughts and ideas were flowing and write I did. I was even up until 5am laying down another chapter for my book. Wednesday there was one word for the day, TAXES. Stayed up until 5am again making sure all my records were in order, i's dotted and t's crossed. Thursday was tax day and I flew out of our afternoon appointment with the tax lady like my pants were on fire because I had not written my blog yet. 

Then began my four day weekend with my husband. It was great to spend time with him but man is he healthy and man does he move fast! We were up and out the door or engaged in some activity pretty much non-stop. Now my husband is quite sympathetic to the restrictions my health places on my life but is also thrilled I am on the upswing health wise. And I did little to put the breaks on his enthusiasm because I am excited too. I want to live! Lord knows I have fought hard enough for it. But I already spent my wad on Monday, Tuesday and Wednesday. And those two nights of 5am tic-tac-toe totally disrupted my sleep patterns. I couldn't fall asleep and when I finally did was not getting deep sleep, waking up each morning progressively more exhausted. Then throw Easter Sunday into the mix, and more processed foods in one day than I eat in a month and I woke up Monday morning crushed under a 7,000 lb. truck. So I ate cake for breakfast and played this stupid bubble shooting game on my cell phone all day as I laid in bed, wishing I could sleep. Then thank God finally last night I slept.

Will I ever learn? I woke up this morning deciding to get back on that magical schedule of productivity which holds no forgiveness for the fluctuating symptoms of my chronic illness. I forced myself to run and hurt pretty damn bad the whole way. Came home and did yoga, really trying to convince myself I was just stiff from not exercising. But alas, one good night of sleep did not replenish my sleep deficiency at all and I still feel like crap. There is no way I am cleaning my house or going to the coffee shop today. But the thought of wasting another day when there is so much to get done makes me nuts. So I am staggering around the house, somehow more cake finding it's way to my plate, trying to convince Yorkie the best thing I could do is give him a haircut. He really needs one, but I don't think he agrees with me. Every time I say this he walks out of the room with his tail between his legs. Yup, Yorkie-cut it is. I mean a girls gotta get something done...

Thanks for joining,

Thursday, April 5, 2012

I Only Have Fibro When I Want

Well folks we have a big problem. It is not a new one, and certainly not experienced by all. But given the nature of our illness, its ups and downs. The lilacs, mulberries and amethysts of Fibromyalgia, we have influenced popular opinion. 

"How come you went to Sally's party last weekend when you didn't go to mine the week before?" "Why can't you join us for Thanksgiving? You were off visiting your friends just a few weeks ago!" "You just pick and choose to have Fibro when it is convenient for you." "You use Fibro as an excuse to not live your life. You won't work but went out to dinner last weekend."

Sadly many I have talked to have expressed the frustration of this sentiment. So let me get right to the point. When a person has a disabling illness they have to damn near live in a bubble to manage you bet your ass we pick and choose what to do with our "well" moments. We just don't have that many of them! Did it ever occur to the offended persons that you like Sally a whole lot more, and had an astronomically better time at her party than you would have had at theirs? Are they aware you did as close to nothing as possible for a week before and after to even make it to your friend's house out of town? Have they ever stopped to think you are still a person with hopes and dreams and desires even though you got sick? The basic tenants of your personality are being squashed by awful pain, but have never gone away? And you have as much of a right to snippets of happiness in your life as they have in theirs? 

I was chatting with a couple of my Fibro friends not too long ago. One of them had been harshly criticized. She went to a party and danced the night away. The court of public opinion came blaring back at her in full judgment. She was accused of using Fibromyalgia as an excuse to only attend the activities she likes, and avoid the ones she does not. Rationalizing that because she danced she was clearly not that sick. Well the real story was in order to dance at this party she had to pump herself full of "pain dullers" and spent the week in bed after because of the pain. But dancing is her most favorite thing to do that brings her joy. She is an adult who is allowed to make her own choices and suffer the consequences as they come. To her, this was worth the cost. Another friend said something that brought this home so acutely it gave me shivers up my spine and made the hair on my arms stand on end. "Criticizing you for enjoying yourself is not love. You want to know what love is? Dance harder."

Thanks for joining,

Tuesday, April 3, 2012

Why Me?

Last Wednesday Yorkie turned seven. My husband and I both forgot, reaffirming my theory that we are much better canine parents than we would be human. On Saturday we went to our local "Yuppie-Puppy" fancy dog boutique such occasions like a birthday warrant. He got a dog-cookie shaped like a crown that said "Prince" in blue icing and Porkie got one that said "Diva" in pink. They were both very happy. My husband and I love to browse and look at all the froufrou dresses and bow-ties and sweaters and boots made for dogs whose parents have far more money and a lot less to do than we do. It was a fun outing.

We started talking to a lady who works there a few days a week, a darling woman who knows us and has helped us in the past. It turns out in the year or so since we had seen her she had been diagnosed with pancreatic cancer. It was horrible news, for that is a cancer few survive. Everyone from Steve Jobs to Patrick Swayze will tell you it does not matter how much money or access you have, it is most always a death sentence. But the woman standing before us looked healthy, had a full head of her own hair and a twinkle in her eye. "They caught it early," she said. "How?" we marveled, knowing pancreatic cancer is hardly ever caught early. Turns out she had a minor and completely unrelated procedure done and the tumor on her pancreas showed up on a PET scan. It had not spread, she underwent major surgery called a "Whipple" which removed parts of her stomach, pancreas, liver, intestines and gallbladder, and excepting a very intense recovery from this surgery was going to be just fine. She even returned to school full-time the following semester. We hugged and expressed our joy, so happy this woman's life was not hanging in the balance.

But on the drive home I got sad, and mad. "How can she go right back to school full-time? That was very serious and six months later she is back in school full-time? I could barely even complete one class after my strokes, and that took me three semesters of trying!" I bemoaned. I felt inferior, histrionic and more to the point, jealous. She too had almost died but bounced back like a ping-pong ball. Here I was going on my seventh year chronically ill. Bouncing back was not part of my vocabulary anymore. Slowly and steadily fighting for every inch of my health and life, that was more my speed. All these feelings of self-doubt and flagellation rose to the surface. Am I indulging myself? Have I made more of my illnesses than they really are? Basically, am I mentally placing constraints on my behavior and blaming them on sickness? It took my very compassionate husband to remind me of the truth. She does not have chronic illness, I do. The nature of our diseases are completely different and given the early detection of her tumor, it was more of a cancer "scare" than the actual horror that type of cancer usually inflicts. Oh yes I suppose he is right. I know there is a physical problem in my brain which amplifies the sensations of pain to a ridiculous level. I did not choose it, heavens knows, and do everything in my power to manage it so it does not suck up my life. I really really wished it wasn't so, but it is. No amount of positive thinking or internal brain-washing will take it away. Then it dawned on me, if the sensations of pain have to be felt so acutely why the hell couldn't the sensations of pleasure be magnified as well? Touche my friends, touche...

Thanks for joining,