Tuesday, January 31, 2012

For Worse, Poor or Sick

As surprised as I am Fibromyalgia has not destroyed my marriage, there is something else that strikes me as even more incredulous than that. My guilt. I feel so terrible for getting sick, convincing myself I have ruined my husband's life. Despite his reassurance, this guilt causes me to behave in irrational, panicked and often paranoid and delusional ways. I can't comprehend why somebody would want to make all the sacrifices he has made to be with, me? I have tried to convince him, many times, to leave me and go live his life. I have even offered to find him another wife! One that can clean the house and go to work and have children. One that can keep up with him and his voracious appetite for life. You know, the former me. I have projected this guilt on to him and gotten mad at him for being mad at me when he was just sitting there watching TV! I have flipped out a' plenty and behaved in desperate and pathetic ways because of this guilt. But for some odd reason he likes me enough to not only put up with my illness, but my craziness as well.

I was discussing this common emotion ill people feel towards their healthy counterparts with a friend. It is sensibly irrational and rational at the same time. As the years pass and my health problems pile up he is getting closer and closer to sainthood, in everyone's eyes but his. So as the conversation with my friend was winding down she summed up what I expressed in a supportive way, but threw an "It wasn't what he signed up for" at the end. I stopped immediately, cocked my head to the side and said, "Yeah, actually it is." I said the same vows he did. I have been a faithful and supportive and engaged wife, always willing to keep working at the living and breathing entity that is our marriage. I got him through college, the second time, after I graduated and he was expelled. I taught him the difference between napkins and paper towels, tissue and toilet paper, and the specific reason one was for your mouth, counter top, nose or ass. The first trip to the dentist I dragged my former frat boy to looked like it was straight out of Little Shop Of Horrors there was so much blood. I snatched up his checkbook early on and merged it into one bank account because the dear man did not know how to balance the darn thing and I needed his money to pay half the bills. And I have written every check since.

If you asked me at any point in our marriage, when I was healthy and unmarred by disease all the way to today, if I would stay by his sick side, be it chronic or terminal illness, I would kick you in the shins for even asking me. Of course I would. He is my husband. He did not ask to get sick, and neither did I. By continuing to feed into this guilt complex I have turned myself into a piteous victim not worthy of the charity of his love. Well to hell with that! I am worthy! Oh life is so different than what we had planned. So different. But the love and respect we have for each other has only grown, despite a union full of flinging wrenches. He married a healthy 24 year-old woman. But that is certainly not who he expected to die with, at the end of his long 98 years of life. When I ask him what he sees in me he tells me I am the strongest person he has ever met, he sees a fighter. He still views me as the ditsy, sarcastic, smart-ass that originally attracted him. He says because he could not imagine living life without me, no matter how sick I am or nuts I can be at times. He gives the exact same answer I would, because I am his wife. Am I a pain in the ass? Oh yes. Am I dramatically histrionic and extremely high maintenance? You bet! Am I worth it? Overwhelmingly so. I am quite glad he agrees...

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Monday, January 30, 2012

I Am Pissed

A friend with Fibromyalgia is new to the area where I live and asked for a doctor referral. Oh that is easy, I thought to myself, and sent her the info for Community Internal Medicine at Mayo Clinic, where they provide primary care for Arizona residents. I mean you can't get better care than Mayo, can you? That is where I go and my doctor is the best doctor I've had since becoming ill. She appreciates I am proactive and I appreciate she actually listens to me and works with me to make life manageable. So my friend went and saw a doctor who referred her to a Rheumatologist. WELL the Rheumatologist got mad at my friend, his patient! He was upset the referring doctor sent a Fibromyalgia patient to him. He told her he does not treat Fibromyalgia patients, nor do they at Mayo Clinic in Arizona. She asked for another doctor referral and he all but told her Fibromyalgia was not an illness medical doctors are interested in treating.

So when she messaged me with this account I hit the roof! Not only was I embarrassed, I felt absolutely terrible my recommendation caused her the distress that comes with doctor appointments of this nature. I know I have been there myself, and most Fibrates I talk to have gone through it too. I then got on the Mayo Clinic website and stared disbelievingly at the "Preparing for your appointment" page for Fibromyalgia patients. What the hell is going on? A friend who is a knowledgeable advocate for patient rights suggested she "send a complaint to the Arizona State Attorney General for refusing to treat. Also to the Arizona branch of the AMA. Maybe put a little birdie in the ear of some hungry reporter? And, make sure Mayo Clinic knows about this person." All excellent advice. That a healthy person would have to put forth quite a bit of effort to follow through with. And we are sick, which decreases our ability to defend ourselves and make a fuss the world, or at least the local news, would find worthy of championing.

I am becoming increasingly less patient with the slow progress Fibromyalgia awareness is making. Specifically the lack of continuing education for doctors in practice. I see a message all over the place, doctors offices, hospitals. It says "You have a right to not be in pain". Well I want to take a out black Sharpie marker and write across every damn one of those notes, "Unless you have Fibromyaliga. Because we are so stupid we can't tell the difference between a drug seeker and person who legitimately is in pain due to a medical problem. So if you are a Fibromyalgia patient you are indeed expected to live in pain". And that pretty much seems to be the response so many of us face in the medical community. I started The Fibromyalgia Crusade with the best of intentions. And on Prednisone. So all my grand goals and ambitions were put to the side when I came off the drug and had to start all over at square one to get my Fibro, and my life, managed. But this is just getting silly. So in the next few days I will write out a letter folks can send to doctors that do not treat them well, acknowledge Fibromyalgia is real or flat out refuse to treat. I have had it. I am pissed. I am ready to kick some ass. And when I get this mad I usually don't settle down until a few heads are rolling...

Thanks for joining,

Friday, January 27, 2012

You Sure Don't Look Sick

Oh if I had a buck every time I have heard those words since 2005 I would have no problems paying my medical bills now! One of the best things about this disease is for the most part, you can keep your looks...but it's also one of the worst. When I first became sick with "mystery illness" I was looking better than I ever had in my entire life. Six months prior I survived a severe bout with pancreatitis that nearly killed me. I subsequently changed my lifestyle and dropped a ton of weight, fitting into a size 8 for the first time since  my wedding. I stopped drinking alcohol and started eating whole, unprocessed, unrefined foods. The clean lifestyle really showed on the outside. So when all of a sudden I started complaining about the intense burning and searing in my legs, like my bones were separating from my muscles, and feeling like I was crushing myself when I walked, presented with debilitating fatigue, the response I received was skeptical at best. I did have a tiny bit of credibility due to pancreatitis being a "real" medical condition, but that quickly went away as no problems ever revealed themselves. I saw doctor after doctor and was given a clean bill of health and some anti-depressants. Man I wish I knew back then how common that practice was! But I had been depressed before and knew this was something else entirely. I would research a new doctor, gathering up my faith and hope and symptom lists and medical records, and come home sobbing because short of something new showing up in the same round of standard blood tests, I was as fit as a fiddle!

The first doctor to believe me was a resident in clinic at UCSF whose mother had Fibromyalgia, and like a good son he was going on to specialize in Rheumatoidology. He is the one that began the long and exhaustive process of ruling out any and every possible illness that shared my symptoms. This went on for about a year, culminating with the last test, a MRI to rule out Multiple Sclerosis. When the imaging came back negative I fell apart. Nothing was wrong with me, but I could barely move! My fear was real. Was I forever locked in a pseudo-livable world of sickness and misery entirely of my own fabrication? How could I get better if I didn't know what I was supposed to be getting better from? My doctor eventually ruled the diagnoses of exclusion Chronic Fatigue Syndrome but had no treatment, no cure, no way to manage it, nothing! My faith in modern medicine crumbled, as did my faith in myself, a future, and everything else in my world. As sickness overtook me life was abound with naysayer telling me to "get over it" or "it is all in my head" or "this is what lazy people do to avoid having to work".

My husband and I planned a long and relaxing camping trip to celebrate my birthday and our 5th anniversary. Money for anything more had already been spent on medical bills, that damn MRI alone cost me $2,000 with insurance. I gave up my corporate job and was working 30 hours a week. My life was starting to swirl down the hole... But it was during this vacation, sleeping on an air mattress in a tent on the shore of the lake, that full-blown Fibromyalgia knocked me on my ass. I ached and throbbed everywhere and could not sleep. A switch flipped on in my brain and nothing would shut it off. I spent six days floating on the surface of the glimmering water, internally burning in the radiant sun, roasting marshmallows around a cozy fire utterly confused. My husband was so supportive but had no idea what to do. We returned from our hiatus and I was noticeably sicker. A few months later I totally broke down and thus began my seven months on state disability. Oh this is when it really got good...

Battling with my doctors to extend my disability when I could leave my house for only 20 minutes at a time was hell. Getting my family to understand was darn near impossible. My friends dropped off, having nothing in common with a sick and whiny former life of the party. None of them had ever been through chronic illness and each suggestion they threw at me was met with a hyper-sensitive and often hysterical reaction. They just did not understand, did not get it. Family landed into town so I brought in food from the Italian grocery. Cooking? Ha ha ha. But just setting the table and opening a bottle of wine sent me over the edge, and no one was grasping how bad this really was.

I broke down, I cried. I isolated myself and typed a journal because my right hand and arm were paralyzed in pain and I could not write. I got mad, sad, enraged and deflated. If there was ever an emotion to be felt, I felt it. Along with unbelievable pain from my body simply doing what bodies do, pumping blood and breathing air and flexing muscle. It all was on fire. During this phase I grew up. I realized this was my fight and mine alone. And I had to win. While the love and support of those around me was crucial, I was the one who had to figure this one out. I stopped expecting the approval and belief of anyone other than a few who supported me unconditionally along the way. I was able to tap into a lifelong, deep need for acceptance and throw it away. It was during this time I became determined to get better, as well. More focused than ever to surround myself with positivity and improvement. I stopped listening to those that ceased to understand me. I did not care if I was doubted and did not absorb or retain criticism. I set out to find answers and find health, everyone and everything else could go to hell.

I was successful, my friends. One step forward and often three steps back, but I just kept going. I exploited my "healthy" look and used it to my best advantage. I prissed myself into the appearance of a calm, rational, believable, level headed, confused sick person that knew what I was talking about and demanded action. Projected an attitude of hope and perseverance. Many still looked at me and doubted, and do to this day, but that is their problem, not mine. Because one day I had some semblance of my life back, and  some control over my body again, and the sweetest revenge was simply not caring enough to say anything at all.

Thanks for joining,

This blog was originally published on 8/15/10. It was a hard climb back from the bottom. I became who I am because of it, though.

Thursday, January 26, 2012

A Yorkie, A Porkie & A Pit

My mom found an emaciated puppy running around her neighborhood. She took the dog in and fed it, and did her due diligence to check for a microchip, report the dogs description to the various animal shelters in the area and posted flyers around her neighborhood. Nobody ever claimed the dog, and animal control only keeps them alive for three days, so with my mom the stray dog stayed. Mom fattened her up and got to know her personality. This dog was a love! Looking like a cross between a lab, pit or staffordshire and something else, she was sweet and loving and not at all like the pits you read about in the paper. She was potty trained and knew some basic commands. She only had one flaw, the girl could not walk on a leash! And she was quite strong, bull-dog strong. But my mom travels regularly for work and could not keep her. She looked for a home but a 50 lb. exuberant black pit-bull looking puppy is not easy to place. So I advertised her on The Fibromyalgia Fun House wall and low and behold, someone was interested.

Christmas eve I took her home to my not very large two bedroom apartment. Mom was going back on the road and I wanted to evaluate her before pawning her off on a fellow Fibrate. Well puppy, who I call Big Girl, was fine. Yorkie & Porkie, not so much. Yorkie will be seven this year and is becoming a grouchy old man. One playful swipe of Big Girl's oversized paw made him resemble a snapping turtle more so than a dog. But that was nothing compared to Porkie. Now Porkie herself is a rescue. She was picked up off the streets at four months old. Porkie's guardian angel saved her from the pound and took the scruffy looking, fur-matted sack of skin and bones to a rescue. Sitting outside Pet Smart one day, playing with all the other adoptable little puppies in the pin, she found us. But oh the fear! This baby doll was so scared! We brought her home and put her in her crate with her own new bedding and toys, and an open door. She didn't budge. Stared at us for a good 48 hours. She was completely terrified of everything and everyone. With hard work,  patience and lots of bravery on her part she eventually opened up and is now a very entertaining and extremely necessary member of our family. However, I clearly I had not taught her compassion for those in a similar situation

She was so rude! Even earned herself the nomenclature "Snivley Snit". She worked herself into such a tizzy I had to hide the stuffed "babies" she guards with her life, for my dog's own protection! She had found a pack she was not giving up and was ready to fight till her death to keep her place. Anytime Big Girl would come near her she turned into a teeth-baring hissing and growling little devil. Even I was grateful to not be a female dog on sleepover at my house for the weekend. The puppy just wanted to play but Porkie was not having it. I started calling Porkie Anaconda because her long skinny neck would stretch around corners to take snaps out of Big Girl. Of course that made Big Girl want to play, and faster than a Maserati goes from 0 to 10 this 50 lb. dog was frolicking and bouncing around my increasingly shrinking apartment. Which made Porkie snap, which made Big Girl want to play...and around the mulberry bush (quickly turning amethyst) we go! After diverting and calming this cycle a dozen times my patience was wearing thin. I had everyone settled down around me, all three dogs, and was able to get pockets of work done. But the second any of them moved, Big Girl wanted to play and Porkie became...Snively Snit! Of course me being me, I lost my patience and yelled. Yorkie and Porkie are well trained. When mom gets like that they split. But it just made Big Girl even more excited and hyper. Oh my, I had met my temper-tantrum match! So I had to calm down me, then Big Girl, then Porkie, then Yorkie. I was very happy when my husband came home from work. Never been so happy to see him, in fact! All is well that ends well. Big Girl is doing quite well in her forever home and Porkie has resumed possession of "Blue Baby", her most prized of all babies she is photographed above protecting in her sleep.

Thanks for joining,

Tuesday, January 24, 2012

My Heart Hurts

I wish I could do it
I really wish I could
Write an uplifting blog today
A tale of hope and inspiration
Commiseration of the everyday struggle
Wrapped up in a neat little package of positivity at the bottom.

But I can't
I just can't find that girl today
Lack of sleep, medication problems and marital discord have taken her away.

My rational mind tells me there is hope
I have experienced it first hand
I have felt it
I know it exists!

But today my head cannot override my heart
And my heart hurts
It is angry
Overflowing with loss and sorrow

Health, normalcy and freedom
From pain, drugs and the big fat tears
Rolling down my face

I can't keep up anymore
Doubted, blamed and thwarted
And really, I don't even want to
No more pretend.

I am sorry my friends
Truly I am
 I gave it my best shot today
And this is what I have to give
I know you understand.


Monday, January 23, 2012

I Got Mad

There are many ways to handle chronic illness. One can ignore it, but that usually won't last very long before it takes you down. One can hide away from the world but that is the greatest depression inducer known to man, isolation. One can feel sorry for themselves and cry, and have every right to indulge in a pity party. Still others set out on the great quest of how to learn to accept it. And some simply get so unbelievably angry they can't see straight. Seeing as we are all not the same person we all don't deal with life's wrenches the same way. I probably felt every range of emotion ever known to man before I settled on the one of my choice, anger. And oh man was I pissed! 

I could not work, sleep, have sex, eat, laugh or cry without grave consequence. What I could do was leave my house for about 20 minutes before painfully smacking into that wall and needing to return home. I could also empty the dishwasher, as long as I did nothing else for two hours before or after. So needless to say I was quickly on my way to becoming an in-valid invalid. And that really really really got my goat. So I fought. With everything I had. I worked so hard to accept now, but refused to accept now as forever. I had to stop stressing out and getting upset over what I could not do. I had to accept my limitations. It was hard, and I did marginally well with it. But deep down inside that anger was burning. 

I am one of the lucky ones that responded to treatment for CFS/ME and slowly my functioning returned, at the cost of extreme physical pain. But I would not accept that either. It made me want to slit my wrists, jump off a bridge and stick my head in an oven all at the same time. There was no conceivable way to live the rest of my life like that. So as my walk down the stairs to take the dog out turned into a shuffle down the street, a stumble around the block and an eventual ability to take my dog on an actual walk where he got exercise, I got in touch with this anger I had squashed deep inside as a matter of pure survival. Pure survival had been achieved, now it was time to feel. I lived in San Francisco, which is exorbitantly expensive, and I would stroll through the hills of multimillion dollar homes that started with four bedroom two bath houses and ended in mini-mansions. I could not afford a house like that. I could not afford any house! But something about it, the contrast between poor sick me and affluent rich them, sparked that flame. What was so different between them and me? Why did they get to have that life and I get stuck with mine? For a good year I marched around the neighborhood raging in anger, telling myself they were not any better than me and by golly by gosh if they could have that house, I could too! It is that anger that kept me going. Fighting, searching, never giving up. People approach Fibromyalgia differently. My competitive nature focused not so much on a particular house or a particular neighborhood or a particular anything. It just got me so mad that I did not have one thing money can't buy. Options. 

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Friday, January 20, 2012

Down The Rabbit Hole

I am sitting here trying to get a grip on my day, and therefore my life. I woke up grouchy and did not want to get out of bed. Yorkie sat one foot from my face and whined with a dopey expression on his until I finally did, though. Figuring if I was going out anyway I mine as well exercise, I forced myself to run. Then I came home and could feel the fingers of angry closing in over my grouchy. My frozen sacroiliac is shooting cold pain down my leg and radiating out my hip. So of course I get anxiety from the pain. And then I did something I have been begging and pleading with myself to do for a very long time now. I recognized I was standing at the top of the downward spiral I constantly seem to be on the verge of and stopped myself from diving in head first.

Maybe it finally resonated that I am not capable of pushing through a bad mood in the same way I am unable to just will away my health problems. Because that mood is usually the first symptom of a flare. The initial telltale sign I am in for days of misery, very soon. Every 34,593 times this has happened before I led with my heart. I got mad, cried, felt angry and frustrated. Then I would usually slip into self-pity, wondering why on earth life has to be so hard. Why did I get sick? With something so strange, to boot? Then I would look around at a house in complete disarray and know that even if I busted my ass and cleaned it from top to bottom it is not something I can realistically maintain. Next I usually start obsessing on my friends that are in the same or worse situation than I am in. And now, adding helpless to my basket of negative emotions, it does not take long to convince myself I am a terrible wife, fur-baby mom, daughter, sister and friend. And a complete and total failure at this thing called life because I was somehow stupid enough to get Fibromyalgia. And I'll be darned if yes indeed, by the time I have done all this, I am not shaking hands with the devil as I dance down the miserable path of a colossal flare.

But no, I am not going to do that today. I cannot guarantee I would have made the same choice yesterday, or that I will tomorrow. But just for today I am going to let the world's problems be its problems. Accept there is nothing that I can do to cure Fibromyalgia right now, go get in the shower and hit my cold muscles with the hot water, slather some Bengay on my lower back and plug on. I may get a flare, I may not. I may be able to reduce its severity and intensity by not indulging my mood. I don't know. I just know I am sick and tired of being sick and tired but more than that, being so darn hard on myself. So for today I am glad to not be my own worst enemy. 

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Thursday, January 19, 2012

Fibromyalgia Patients Don't Want To Get Better

Anyone ever heard those words? I have. From medical doctors to multi-level marketing juice purveyors and everyone in between. It's stupid, we know. But why do they think this? What have we done to create this reputation? And after coming out of a horrible flare and peaking my head shyly around the corner of "normal" life I think I figured it out. We have to fight so bloody hard for so bloody long to get anyone to believe us. We get sympathy for the cold or flu but not a disabling illness there is no cure for. We try to remain positive and not complain. But our consideration painfully backfires in our faces. Since they can't see the illness, and you are not complaining about it, they forget. Assume the pre-Fibro you still exists in the same body and are usually not terribly pleasant if you refuse to meet their expectations or worse for you, fall down in the giant heap of a flare trying to do so. So sometimes we may get a little defensive. 

When I was on disability everyone kept asking me when I was going to get better. It would send me into catastrophic meltdowns. It's not like having a baby or wearing a cast for a broken bone, for crying out loud! There is no "due" date on chronic illness. But because of that specific function, that there is no end, for some inconceivable reason it is deemed optional. So that is why, I believe, when somebody discovers their personal cure they may shout it from the rooftops and insist everyone else in the world can get better too, if they just did _______. And how certain ignorant individuals assume they know the cause, such as lazy depression or nutritional inadequacies, and therefore self-determine the patient is not doing what they think the patient should to get better. Fibromyalgia is a really long journey to a seemingly unreachable destination. The road is as highly individual as the cause of Fibro itself. Each person finds their way based on individual circumstances. In my experience reaching for balance, homeostasis, is the one way I stay ahead of Fibro. One step closer to that destination, the place we all wish we could get to more than anywhere else in the world right now. Life Fibro free.

Thanks for joining,

Tuesday, January 17, 2012

The Breakable Bonds Of Friendship

Yet another area of our lives chronic illness bulldozes. I blogged some months back, when I was still running around in a bathing suite and working on my tan, how we met a couple that seemed really nice. So we started hanging out with them. And quickly realized we had as much in common with them as Russell Brand has with the Pope. They worked hard all week to watch obsessive amounts of mixed martial arts sporting events and get black-out, pass-out drunk every weekend. It didn't take us long to figure out we were oil and they were water. We tried, we did. But after the third time hanging out with them my husband and I looked at each other, and the expensive bar tab we were hardly able to afford, and said enough. I have spent months trying to figure out why on earth we came off as compatible to die-hard partiers? Why would they just assume we were like that? I told the girl I was sick from the get-go. But she just did not get it. We told them we didn't go out very much but then decided we were fuddy duddy and joined them when invited. But it just did not work. On the bright side I was given a chance to confirm that at age 35 sitting in a bar and watching people get wasted is not only boring but actually extremely annoying.

When I first got sick my social life mainly consisted of work friends and party friends. Both dropped off quickly, for they were not friendships based on anything real or lasting, but more temporary circumstance. A handful of friends remained from my past but undoubtedly the day would come  when they would expect or need something from me and I would let them down. Most of them eventually faded away, too. Then there were the stressful and high maintenance friends. Usually so self absorbed they didn't notice when I got sick, once I stopped doing what they wanted, giving them the attention their bad behavior usually illicited, they dropped me, too. That sucked, because I was the one that should have said, Get on outa here, you are too much for me! But my self-esteem took a big ding when I got sick and standing up for myself became hard.

I now have about five friends from my past. They are my true friends. The ones I will have for life. They know me and love me and accept me for who I am. But none of them live anywhere even remotely near me. It's lonely. But something happened, when I started this blog and The Fibromyalgia Fun House on Facebook. I made friends! True and real friends of my heart. They not only offer me compassion and sympathy when I so desperately need it, they understand firsthand that when I say my clothes hurt my skin, my clothes really do hurt my skin and I do NOT need to be checked into a psych hospital. At least not for that. It is amazing to not have to explain every little thing in so much detail I get sick of hearing myself talk and just want to go to bed. But none of them live near me, either. So the solution to the whole rigmarole of establishing future friendships hangs in the balance. But I have figured out what I am going to do. It is called my "Friendship Disclaimer". In summary it states I am a true and faithful friend to the end BUT you have to really want to be friends with me because I am way more focused on myself than I should be. I can't always go the extra mile, physically or emotionally. I disappear for days on end when I am absorbed in a particularly intriguing piece I am writing or in a bitch-from-hell flare. I expect you to come to me and put forth most of the effort, for I simply can't. And no drama, I just can't do drama. So anyone nuts enough to accept those conditions, who does not get falling down drunk every night, is welcome to apply. Just read my "Disclaimer" first so you can't say I didn't warn you!

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Friday, January 13, 2012

The Blue Angels

One weekend in 2006, the year I was the sickest of my life, the U.S. Navy Flight Demonstration Squadron known as the Blue Angels were coming back to town. They came every year to to dart, bob and weave over North Beach in San Francisco, demonstrating quite a show-stopping display. It was a performance I had seen many times, simply walking up to my apartment rooftop and gazing across the magnificent San Francisco Bay. Feeling the rush of excitement and closeness to the frenzied action as the planes thundered and nose-dived on top of me, pulling up and away in the last second of safety, or so it felt. My husband, sadly, had not been so lucky. Our years in San Francisco were harried and intense for him as he pursued two bachelors degrees full-time while also working full-time. He was very busy and missed most of the uniquely San Francisco weekend experiences due to the responsibility of his hectic schedule. But now he had graduated and we moved a little south. Despite my mounting mystery sickness I scheduled a chiropractor appointment in the city with a leisurely afternoon of Blue Angels viewing while we hung out with friends in our old neighborhood.

But I just could not do it. Simply attending the chiropractic appointment took every ounce of energy my Fibromyalgia and Chronic Fatigue Syndrome racked body possessed. And as we left Pacific Heights and headed toward North Beach tears sprung from my eyes. I could barely move, but knew how excited my husband was to finally see this magnificent display, and how badly he needed a day of fun to mix up his long work days and stress from my increasing health woes. There was not one ounce of anything I could pull from myself to proceed with our plans, and as I sobbed out my needs I visibly watched the life drain from his body as he slumped over the steering wheel and set his jaw in a tensely-bound square. The guilt radiating from my body matched the despair shock-waving from his as he turned the car toward home. I knew I was ruining his life and was powerless to stop it. I begged and pleaded with him to understand, get in my head and see how bad off I was, not giving him the right to his own feelings of anger and frustration he was so badly due.

This is but one of the multitude of times my health problems screwed up our plans for life. But the memory is so acute, so pointed. Such a glowing example of what these diseases rob from you and yours. The people we depend on so desperately to get us through, shelter our sick and throbbing bodies from the harshness of the outside world. It has taken me years to get out of my own head and begin to let him feel his feelings. Feelings he compressed deep inside and shoved out of the way because it was just not practical for both of us to fall apart at the same time. I did him a major disservice, but believe I did the best I could at the time. As my health returns and light and laughter and springing steps once again envelope our union, his tightly wound and deeply suppressed emotions are rushing forward. And I must deal with them. I must encourage him to talk about it, tell me how mad he is at me for getting sick, knowing it was not my fault, and then feeling guilty for his anger. I must listen as he pours out his frustration and sorrow he was forced to bottle up inside for so many years because everything was simply about me. I must listen with compassion and grace and understanding and not own it, not get defensive or feel guilty or take it personally. This is simply and truthfully what happened to us, and what we must do to process and move on. For it is in living and rejoicing in the now that we can heal the past. But I have not forgotten what I owe him, a Blue Angels nose dive on top of his head, and one day soon I hope to replace that painful and missing experience. Do the Blue Angels come to Arizona?

Thanks for joining,

This blog was originally published on 8/14/10. To date it is still my husband's favorite.

Thursday, January 12, 2012

Well Then Let Them Eat Toast

Tuesday was a horrible, terrible, no good, very bad day. Or as one of my friend calls them, a "drink heavily or take a long walk off a short pier" kinda day. I was up until 3AM the night before and slept till noon. So I woke up already behind the eight ball. I forced myself to run and do some sun salutations but could not muster up the motivation for a full yoga practice. I knew I was doomed the moment I walked into the living room and saw the mess I have promised Fibro-me will not bother me. But not on Tuesday! No, I started nitpicking everything apart and getting very bent out of shape. At this point I really should have gone back to bed for the day. Wouldn't it be so nice if we could just do that? Then I burnt my toast for the 559th time (my toaster oven really sucks) and was on the phone with my husband when I realized this. I screamed, "I burnt my toast I am hanging up!" into the phone and flung the charred remnants of a slice of bread across my kitchen towards the trash. I made a new piece while my egg got cold and flipped on the TV. Then I proceeded to cry at the end of a documentary about Hugh Hefner. Well clearly something had taken over my body and it was not me!

At that point I decided a shot of horse tranquilizer might be a preemptive step in avoiding a full on meltdown. Okay maybe not that dramatic but I have learned, I don't know it its Fibro or the strokes or just my wiring, that once I get going I will usually escalate my dark cloud into a full-on tantrum if I don't get control of it, and for heavens sakes I just didn't have time for that! Then I piled Yorkie & Porkie in the car and headed out to mom's house for dinner with relatives that have just arrived for the winter. Well I leave my house at 6PM and of course hit traffic. Poor Porkie quickly pukes everywhere because the jolting from the stop and go made her carsick. I look at my cell phone and the battery has about twelve seconds of life left. And then the whopper happens. I am forced out of the lane I needed to merge onto the connector for another freeway. I got so mad at this mean person who would not let me over! So I got off at the next exit. Once I got back on the freeway I realized I had already passed the connector coming from that direction. So I go two exits back in the direction of home and give it another try. And I wish I was kidding here when I tell you the exact same thing happens to me again! Except this time I cannot get in the lane. Once again another very mean person will not let me over. Clearly I have forgotten how to drive in traffic.

I am furious. Waving my hands out the window to please let me over you very very big SUV! But no, they too are incapable of humanity. It seemed intentional, driving the same speed as me in my blind spot for 3/4 of a mile, no matter how fast or slow I went. So I got off the freeway again, turn around and switch my almost dead cell phone on. Crying, I told my mom what happened and I sure wish I could make it but at this point don't have it in me and am going home. I felt robbed. Of my day, my family, my opportunities, my warm egg on a nicely toasted piece of bread. I felt sorry for myself and pouted. But when my husband came home he asked me why I threw burnt toast into the living room. "I didn't!" I said. When I hucked it across the kitchen towards the trash I missed. I guess Porkie, being quite the hunter and gatherer she is, sussed it out. But only a small rounded over corner was gone. My husband starts cracking up as he waves the rock hard petrified piece of wheat in front of my face and tells me I burnt the toast so bad not even the dogs would eat it. Pretty soon I was holding my side and laughing too, because the whole day was just so incredibly...preposterous. 

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Tuesday, January 10, 2012

Sex And The Fibro Girl

Sorry Helen Gurley Brown, I could not resist. This is a topic I've been getting requests to talk about from day one of penning this blog. I have over 500 published blogs and finally, I'm going to address it. I'm not here to talk about why we need it, who's doing it, or who they should be doing it with. That's either something you already know or none of my business. I'm simply here to say in my experience, sex and fibromyalgia are vicious enemies. Or more directly, fibromyalgia is a heat-seeking missile out to destroy both the physical ability and chemical desire to participate in activities that require contorted muscles and repetitive motion. No matter the endorphin rush it may provide.

When my body was wracked with pain so great that wearing clothing or jewelry hurt, close, intimate contact with another human being was the last thing on my mind. If it's a flu or cold, surgery or procedure a person will heal from, a temporary hiatus is not the end of the world. But when that illness is chronic, and it does not go away, that can indeed become the end of a sex life.

It's a very frustrating position to be in. The last thing in the world my husband wanted to do was add to my physical pain. The last thing I wanted was a repressed and miserable husband who wasn't getting his needs met. The guilt of being sick in the first place was already torturing me! After a few tizzies of hurt feelings and mangled communication erupted into outbursts of frustration, we finally got real and talked about it.

Turns out we were both suffering from a similar emotion, for entirely different reasons. His position: my sex drive was nonexistent. We didn't know it at the time, but my testosterone was in the eighty-year-old woman range. But before that medical information became known to us, he mistook my lack of initiation as a lack of attraction. Additionally, the last thing he wanted to do was add to my physical pain, so he was ambivalent to approach me.

My position: I was in agony. Sex was a painful endeavor I had no physical drive to engage in. Plus I'd gained so much weight, I didn't think there was any possible way he found me attractive. I looked puffy under the eyes and grew a generous double chin. My middle, the most popular spot on my body to balloon up, thickened noticeably. I don't know how he saw sexy, for the mirror undoubtedly told me I was anything but. 

Luckily it didn't take long for us to discover the power of intimacy. Being who we are, we set out to make it a game. It was called "20 Minute Time." When either one of us shouted those words, we had to hightail it to the bedroom. We would lay on the bed and get caught up, holding each other in a reverse pillow talk, if you will. No TV or computers, no expectation or pressure. Just twenty uninterrupted minutes of each other's company. And if it led to something more, hey, that worked too!

Either way we bonded and strengthened the love and passion so hard to keep alive in a long-term relationship, even between healthy people. Eventually we figured out ways to modify sex itself so it didn't hurt, or my pain was very minimal and entirely worth it. Creativity in this arena is critical. And like everything else in my life, energy had to be stored up in advance. And rest was required after.

Ultimately I discovered my fibromyalgia diagnosis did not come with a sex-life death sentence. It was hindered, hampered, and complex to figure out. It changed, like everything else in my life. It required flexibility (ha ha) and an openness to new ideas. But there are ways, if determined, to accomplish pretty much anything. For many of us, this is a pretty important anything.

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Sunday, January 8, 2012

The New York Football Giants

I started dating my husband one month before I graduated from college. Right after graduation I moved and we spent six long months falling in love long distance. Sick of being apart he threw away nearly everything he owned, jumped on an airplane and moved into my 350 square foot "junior one bedroom" apartment. Luckily it had skylights or we would have turned into over sized trolls maneuvering around a hamster cage. That first Superbowl came shortly after he moved and he had no local friends. So I bought chips and dip and Bud Light in the cube and we had our own Superbowl party. It took me a good three years to realize football was so much more than the Superbowl (I was raised by basketball fanatics). And another two to fully accept "football season" as a period of reverence in our home.

Once my boyfriend was my husband of many years I finally understood it was not so much about football as it was about a particular team, the New York Giants. I believe my slow realization was lengthened by the team's lagging performance in the first decade of the new millennium. Starting with losing the Superbowl in 2000 I proceeded to watch my husband meltdown like clockwork every time they lost a game. I started to hate the Giants. They were making my life very complicated. A perfectly good Sunday would be ruined in a matter of minutes as the score flipped and the Giants seemed to forget they were playing football and started playing track and field. After gracing the playoffs with one game in 2002, 2005 and 2006, they went on to break one team's very impressive record breaking record and bring home the grand poobah in 2007. Since then they have been mounting and building, making the playoffs for one game in 2008 and just won our first playoff game for the 2011 season yesterday. 

Through all this loss and success my husband remained an ever faithful fan. There were years where people laughed at him and told him to get a new team. But that is not how that man works. Once they started winning the greatness of each victory was oh so much sweeter because he had remained true, rode out the rough years and was now seeing something near and dear to his heart find success. At some point during the last thirteen years we have been together I stopped getting annoyed and started watching. I will admit it, the players can be easy on the eyes. But being the competitive lass that I am I started wanting to know what was going on. And learning the rules. I now watch the game with honest enthusiasm. I have gotten to know a little bit about those boys in red, white and blue. How they can cream a team in the first two quarters only to come back after halftime and lose miserably. How their favorite position seems to be the last two minutes of the 4th quarter down by 8, and they will pull out a victory. You can't get too uppity as a Giants fan. They seem to relish the role of the underdog, it is when they do their best, play the hardest. And achieve the most. There are a lot of ups and downs and quite frankly they are extremely unpredictable. But when they are on it is glorious. Amazing. Spectacular! As I watched an impressive game yesterday I noticed the parallel between the endless grit and strength my husband and I have tirelessly exercised to be successful in our lives is reflected in our team. No we have not always achieved the winning title, but we have not failed either. We keep showing up, day after day, season after season, year after year, and trying with all our might to get it right. One of these days we will...

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Friday, January 6, 2012

Fibromyalgia Support Group

When I first became ill in 2005 I was confused and misunderstood. No doctor could tell me what was wrong with me, I was just depressed, they kept saying. And they treated me like a mental case for even asking for medical modification to my work schedule in order to keep my job. I was sick and getting sicker and did not quite believe myself, that is how good they were at convincing me nothing was wrong, it was all in my head. Or my pathetic excuse of laziness to avoid having to be an adult and move forward in life was rearing its ugly head. So blame and question myself I did. Thank God my husband did not. He believed in me and loved me enough to stand beside me the entire time. The entire "mentally unstable bitching, moaning, complaining, lashing out at him because there was no one else to" time. I know how truly lucky I am. I also know that I would not have made it through if not for his unquestioning love and support. I hear tales of spouses leaving, sick and tired of their sick and tired they vowed to love in sickness and health. As money, work and lifestyle all flush down the rabbit-hole of normalcy replaced by chaos, they bail. Leaving a person already so raw and stripped bare completely alone. It makes me angry, and it makes me cry.

I searched for support groups, someone to tell me I was not loony, there were others that understood and had been there, were there, for crying out loud! But every attempt, every turned-over stone left me so very alone as no real network ever revealed itself. So I just gave up, and got desperate, and threw my credit card at what my research showed was my best bet. Clearly this was not something I could live with so I set out to get over it. It, the still unnamed disease that was quickly disintegrating my body into a mush of pain, exhaustion and fear. It did not hold a promise of any kind of future. I was disabled and had to return to work! I was 28 years-old and had to get better. Better from what, I still did not know. A private  and specialized Fibromyalgia and Chronic Fatigue Syndrome clinic was my high priced saving grace. They diagnosed viral infections of CMV (Cytomegavirus), EBV (Epstein-Barr Virus) and HHV-6 (Human Herpes Virus-6) as responsible for Chronic Fatigue Syndrome, along with many other bacterial and fungal infections allowed by the breakdown of my central nervous system from the viral infections. They understood and had success in treating patients with this condition. They exploited the best of holistic and modern medicine to their advantage and I did recover, strengthened my immune system so it flipped on top of the viruses and their symptoms did not rule my life. I took a drug that was a major risk, Valcyte. A cancer-causing carcinogenic, it was a powerful anti-viral and no joke. And there was no guarantee it would work, for it was still in clinical trials. I had to make a decision, was potential quality of life now worth potentially cutting my life short at the end? Hell yeah it was! And it worked, after two rounds and tons of other drugs and a bunch of other stuff. But by then Fibromyalgia had settled in, my nerves damaged from such a long journey of untreated infection, and went wild in an epic battle. I emerged as victor and got it under control. That is where I sit today. In remission from CFS and managing my Fibromyalgia. My life is not what it was before, but is so much better than where it had been.

If I can offer any words of encouragement to my fellow Fibro friends it is to keep searching. Search for the support of those you know and love, search for the friendship of others that understand and are in the trenches with you. Search for doctors and medicine to heal and manage your daily life, work and responsibilities. Search for a way to laugh a little bit every day and find a way so this illness does not control you. Oh so much easier said than done, I know, but as long as you are living a life, it mine as well be a life worth living.

Thanks for joining,

This blog was originally published on 8/13/10 and is an excellent summary of my journey with Chronic Fatigue Syndrome.

Thursday, January 5, 2012

Just Because I Am Having A Lilac Day Does Not Mean Fibromyalgia Has Gone Away

I have a serious problem. It is my good days. The ones I work so hard to have by getting my rest, managing my stress, eating nutritious food and all the other rules I must follow to avoid flares as best I can. In the past it was me, all me. I would have a lilac* day and jump up and run around in a frenzy trying to get caught up on everything psychotically pecking at my psyche I had been too sick to do. Then I would be sick again. I did that about 75,000 times before we met half way. My body resumed a degree of functionality and I developed an ability to look at disarray and leave it alone.

My problem now is expectation. If I am not bitching and moaning about my sacroiliac all jammed up or the pinched nerve at the top of my convex spinal cord causing my right hand to lose the ability to grip, shingles or an Epstein-Barr flare, then it is assumed I am just fine and dandy as can be. Not sick anymore. Why would I not jump up at the chance to join the land of the normals? Go shopping or to dinner, girls night out or a spontaneous movie? BECAUSE THE REASON I AM NOT IN A FLARE IS BECAUSE I DON’T DO THOSE THINGS!

Sigh. How on earth does one communicate this? How do I tell my friends and family, even at my best I cannot keep up with them at their worst? That my life is carefully managed so I don’t throb with every heartbeat in body-wracked pain and I simply don’t have room? That pretty much they have to accept me on my terms or not at all? Oh this is hard. Oh so hard. Getting Fibromyalgia managed was a nightmare. Living with managed Fibromyalgia is worlds better but still comes with it’s own complications and challenges. But ever forward we must go…pushing for progress, recognition and acceptance. We crusade because we have to, for we simply must find a way to exist on this earth without this illness eternally ripping us apart.

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Tuesday, January 3, 2012

The Precious Present

2011 was a year I was anxious to leave behind. It was certainly not the worst year of my life or anything, but it came with it’s own special turmoil and anguish and I really just needed a fresh start. I was so bogged down in the past. Past behaviors, patterns, hurts. Past reactions, responses, expectations and disappointments. Sitting in the recesses of my life, the forefront of my mind, marring my future, in a place I could not reach because they had already happened. I would get so mad about whatever offense I was obsessing over, be it a misunderstanding or slight injustice or blatant injury. A year of stale emotions I cycled through continuously, round and round like a Ferris wheel. It was exhausting.

At some point it occurred to me I was allowing the infected past to poison my precious present. And then I got mad about that. So after many cycles of anger, fighting back as best I could and ultimately getting my booty kicked, I finally conceded. I could not fight the anger monster anymore. It was much bigger and stronger than I. But I discovered what I could do, for I am far smarter than it. I could stop giving it life. I could cease to rise to it’s occasion. I could rip my brain out of whatever negative thought pattern I was caught in and ask myself what it had to do with right now. When the answer was nothing, I could force myself back to right now and change my focus the way some folks change an uncomfortable subject. Quickly. So I set out on a journey to chisel those neuropathways in my complicated and sometimes questionable brain into automatic response.

It takes years, to break a bad habit and replace it with a good one, in my opinion. I am plenty old enough by now to know practice and mindfulness are the only ways to get there. And that a new digit at the end of the calendar year did not mean I had wiped the slate clean and was starting a new year as a new me. I still had the same problems, hurts and anger. But I also had a new way to deal with it. Like many things in life that are really hard to do, it takes making a decision and refusing to give up on it, no matter how many times life hurls you off track. I got so sick and tired of watching my blessings pale in comparison to my hardships. I know my puppies will not be here forever, my youth is at that “beginning to be fleeting” stage and there are no guarantees tomorrow will come. 2012 is the year I have decided to gift myself, no longer content to allow right now to slip through my fingers. Right now is all I have, by returning again and again, to the precious present.

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