Tuesday, October 30, 2012

A Million Different Things

I am well aware I irritate people when they ask me what I did to get my Fibromyalgia managed. Hell, if I wasn't me my standard answer of "a million different things" would piss me off too. This is a life wrecking illness for so many and the desperation it can coax out of a person, well it's pretty intense. After I got sick and my inclination to curl up in a ball and die became futile I searched high and low for that answer myself. I couldn't find it, though. There were plenty of people selling the cure, or preaching a school of thought. No shortage of books to read and opinions from fellow-patients and strangers alike. But none of them fixed me. Waved a magic wand over my head and sent me back to life with a swift pat on the behind. They all just confused me. Made me feel bad about myself because I wasn't able to brush this off and go about my business. Inflamed self-doubt and flagellation because so many people made it sound as simple as a decision, one I was just too weak or stubborn or oblivious to make.

In the beginning I didn't know what to do with myself. I was raised on modern medicine. When I got sick I went to the doctor and they fixed me. Sometimes it was a pill or advice to rest, a couple of times a surgery, some hospitalizations thrown in for good measure. But I always rebounded, bounced right back to where I left off, so I didn't have much reason to question them. Then my eyes were peeled open by rubbing sand in them. I got very sick and not only could my doctor not tell me why or what to do, they didn't even seem to care! Treated me like I was a nuisance when I thought I was dying the slowest, most painful death imaginable. Well when the going gets tough the tough starts learning how to survive, and that is what I did. It took me many years and countless efforts to break through the deep sickness my body was bound in. And I am still sick today, but not at all like I was then. Knowing what I know now I couldn't find the answer because there was no one answer. I really can't say any one or five or ten things did it. It's far more about what didn't I do, than any one thing I actually did. I darn near deconstructed every aspect of my humanity and put it back together again, with many enormous setbacks along the way. 

At some point throughout this whole process I became a health conspiracy theorist. It was a gradual shift, subtle at first. But the more I learned the more confused I became about the life I lived. Information like artificial sweetener and birth control pills being bad for me didn't make any sense. Isn't that what the FDA is for? Now I laugh, for I had no clue what was in store for me or how quickly I would abandon blind faith and start thinking for myself. The more I read and studied the more what I was learning started making sense and the more I changed. As a natural skeptic I challenged what I learned every step of the way against my own reasoning and practical experience. No one doctrine swept me up and enraptured me with it's truth. Instead little bits of awareness started to break through the pain and sickness as I started to find my truth. So I still have no one answer, I have a lifestyle. I'm greedy. Modern, holistic, alternative, complimentary, if it works for me I use it. My illness is managed because my life is managed. Seven years in I am starting to find my smile again, my joy. Lightness in my heart that was weighed down with the burden of sick for so long. Now I can look back and thank my lucky stars I've survived this, not stomp around in bitter anger that this is my life. But it has taken me so incredibly much to get here and a lot of stomping bitterness lies in the wake of my path.

So how did I get my Fibromyalgia managed? I opened my mind and didn't give up. These are the books woven into the tapestry of my life which led to or inspired the million different things I directly or indirectly did to get managed. I've found with this illness no two journeys are the same. Each person has to seek and find their truth, which undoubtedly is not the same as mine. I receive no kickbacks for posting these titles and am not linking them to any websites because I don't give a rats woo-ha where or if you buy them. But for those who really want to know, this is what laid the foundation of my journey back to health... 

-From Fatigued To Fantastic by Jacob Teitelbaum, M.D.
-The Body Ecology Diet by Donna Gates and Linda Schatz
-Solar Power For Optimal Health by Marc Sorenson, EdD.
-The Maker's Diet by Jordan S.Rubin, N.M.D., Ph.D.
-Ageless by Suzanne Somers
-You On A Diet by Michael F. Roizen, M.D. and Mehmet C. Oz, M.D.
-The Master Cleanser by Stanley Burroughs

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Thursday, October 25, 2012

A Rebel Yell

I was one of those angry rebel teenagers. Luckily there were plenty of folks who loved me so somehow I managed to survive a tumultuous adolescence. But during that time I established some pretty scary patterns that followed me into adulthood. I don't remember how many years into my career I was when I realized I had a bad attitude. It was a hangover from running around and telling the world to go to hell during my early days of independence. There was just so much to rebel against then! But now it was only hurting me. Nobody cared if I stayed out past curfew or went to class anymore. It was as simple as either bringing home a paycheck or not. Make a success of my life or don't. It was completely and totally in my hands, and mine alone. So I got with the program and sought out therapy, trying to figure out how on earth at the end of all that hell-raising the only person I was still hurting was me. 

Like everything else in my life hard work, perseverance and the refusal to allow an unsatisfactory present propelled me forward. A wee bit older and wiser, I could now examine my options with a hint of objectivity and honesty and choose differently. This little attitude shift served me well. I got a big promotion at work and learned where I needed to practice discipline and restraint to achieve my long term goals. The concept of ignoring negativity and embracing positivity opened up my world. I could now see further than the instant gratification in front of my face and knew what to do to make it there. I was movin' on up to that deluxe apartment in the sky! 

And then I got sick. Everything changed. It was no longer about choices, but survival. It was utterly maddeningly horrific those first few years. CFS/ME and Fibro pushed me to the brink of my sanity so many times I am still shocked some days to wake up and have my wits about me. There is a unique kind of hell in having a serious illness nobody takes seriously. Every ounce of improvement or bit of health I have today is mine because I fought for it. Nobody handed it to me or gave me the recipe for how to find a quality of life worth living on the other side of chronic illness. It's so darn complicated I don't think anybody else's recipe would have worked for me! At first I had no clue what I was doing, or that it could even be done. I just knew I had to do something. And sure enough slowly, very slowly, lurching in a zig-zagged path that went backwards half the time, I was able to find my way. Looking back now I can't help but think knowing I'd changed my reality once gave me the strength to believe I could probably do it again.

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Monday, October 22, 2012

A Fibro's Ode To Dr. Seuss

Suddenly for some reason my behavior strikes me as completely ridiculous. So absurd in fact I have absolutely no idea who the woman was that did this. This is my flare to flurry pattern. It's a pretty simple routine. I feel okay because I have been sleeping and taking care of myself and exercising and not freaking out over one life trauma or another. So I fly into a flurry to catch up with the life I am supposed to live. The life of a woman with a clean house and her bills up to date, all the laundry done  and calls returned not nearly so late. Unfortunately she said her farewell in 2005 but me, the person sitting here writing this right now, I don't think I noticed! I sure haven't acted like it. Because I have expected me to be her but we are not one and the same. Not anymore.

Didn't matter, because in attempting to meld her, the busy, outgoing type-A, with me, the socially estranged, overly-cautious recluse I have become, that type A fought to the top every time. It's comical, in retrospect. In a sick sort of way. So here I run around in a flurry doing everything I am supposed to, in order for me to be pleased with me. And in doing that, in acting like her, I slide right into flare's home plate. Then I feel like a bug who hit a windshield so I focus on ways to make myself feel better. That sleeping and exercising and managing stress thing again. And low and behold there is a God because it works! Slowly but surely the flare will abate, I'll stop feeling like the bones inside me are going to crack or the fiery swirls of chainsaw are whirling around my back.

So there I sit feeling better. What do I do? I look around and the house is a freakin' mess! The dogs need to be groomed, bills paid and oh but don't forget to have dinner made. Calls need to be returned so people don't just write me off forever. And I really do ask myself what the hell is my problem? Why is my life so out of control? Why is it I don't have a job again? Really, I mean really, why do nearly every morning I sleep until ten? And then she steps in... Before I know it I am racing around trying to get everything done at once, good riddance! I am apologizing for every failed expectation and lost stroke of brilliance. I promise myself this time I am going to do better, not succumb to some pesky little illness. And before I know it, oh I think by now you know where this goes, I've gone and done it again, and let the Fibro wall smack me in the nose.
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Thursday, October 18, 2012

What I've Become Is So Burdensome

Last week my mom invited me out for lunch and a shopping excursion at our local mall. I was thrilled to join her. I haven't been getting out of the house nearly often enough for some time now and woke up full of purpose that morning to actually have something fun to do with another living and breathing human being. But I have been in quite a state lately and was a bit of a hot mess. Like almost cried eight times over lunch hot mess. Considering the week before I watched Gwen Stefani's True Hollywood Story blubbering with snot and tears clutching at tissue like a bride left at the alter, I guess the fact I didn't actually cry was progress. Even if I felt like a raw emotional wound. So we made it through a tearless lunch and ventured out into the mall. It took all of five seconds for me to realize I felt like an alien in a foreign land. Mind you I worked at this mall for a few years before the strokes and spent the better part of ten years working in a department store. This should not be foreign territory at all.

But, alas, it was. People looked weird. Their outfits and hairstyles and makeup looked weird. I kept catching these faces frozen, distorted and puffy from the bevy of cosmetic "procedures" so popular these days. They looked really weird. The merchandise was odd, the way everyone related to each other seemed off, everything was just left of center. I walked around in a daze not really knowing what was going on or how to engage and participate. Seriously, in my reclusive anti-social efforts to get my brain and body to heal without inflicting my crazy on everyone else is it possible I have become this out of touch with the world? A few days later through the crystal clear 20/20 of hindsight I am happy to say no I have not.

Because I wasn't just having a rough couple of weeks, I was under severe distress. I'd been stepping down on some medications and the withdrawal was awful. I had my viral flare thing going where the roof of my mouth starts shredding and my face starts throbbing with the stab of a million nerves. That alone puts me in evil woman mood. And I was hormonal. Very. But it seems I don't realize these things until I get through them, that there might be a reason for my whacked out state, no matter how many times I run around this track. So I repetitively go through the same cycle of blaming myself for massive inadequacies when I am hormonal or mourning my lost opportunity in life when I am in a flare. I actually took it so far this time to actually start asking myself why I wasn't strong enough to stop this illness from taking me up in its evil clutches in the first place. Like I was supposed to have known what was to come and how to stop it. Well imagine my relief when I woke up on Friday morning and suddenly, like the flip of a switch, the sadness darkening my days for what felt like weeks and weeks was gone. Oh sweet relief, life isn't a miserable terrible experiment gone terribly awry after all! Had I found my joy or the flare just ended? Are they even different things or two sides of the same coin? So I went yesterday and got a tiny little calender I could track my activity, symptoms and mood, and I am determined to follow through with recording my reality this time. Maybe if I have it to look at the next time Just A Girl comes on and I face plant sobbing into a box of Kleenex I will realize something bigger than I can control is at play here and just be nice to little 'ol me.

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Friday, October 12, 2012

No More Rheumatology?

I had my twice annual doctor appointment this past week. My last visit in May didn't go so well. I was hurting and needy and goodness me if some doctors aren't just like a man looking for a one night stand, they don't want you in the problem phase! I felt judged and misunderstood and diminished and not listened to. So I left in a huff and declared I was going to find another doctor which I have not done, no not at all. Haven't even started looking, it's just so overwhelming. I rationalized since my Fibro is pretty well managed, and a new doctor wouldn't be able to do much else for me, I could skip out on practicing what I preach. Not very noble but at least I'm honest about it. Well my mood as of late has been pretty grouchy and I was worried I would wake up the morning of the appointment in hell-woman mode and spew it all over my doctor. After the last appointment it became very obvious negative emotions are a massive hindrance to my communication with her. But I woke up and didn't hate the world and went in with a calm and open mind. I wasn't going to diminish my reality, but I wasn't going to react to it in front of her either.

This time it went well, but I wasn't asking for anything, just routine maintenance. It was probably the most normal doctor appointment I've had since I got sick in 2005, matter of fact. So I came out with it and asked her point blank why I have been hearing from quite a few people that Mayo Clinic in Arizona does not treat Fibromyalgia patients anymore. She got "that look" on her face. Like she knew but couldn't say. She explained it's not that they wouldn't treat a patient who has Fibromyalgia in the primary care department as a primary care doctor, but Rheumatologists weren't seeing Fibromyalgia patients anymore as a specialty. Now this is one of my worst fears come to life, that Rheumatology as a practice would kick Fibromyalgia to the curb since more and more research is confirming Fibromyalgia is neurological and not a rheumatic illness after all. So I asked if Neurology was picking us up? No, she all but laughed, they were not. Now I personally have never been to see a Rheumatologist but hear their consult can be quite necessary to confirm a diagnosis or support a disability claim. They are the specialty that has housed our illness for over 20 years and established the diagnostic criteria necessary to separate Fibromyalgia from a "wastebasket" diagnosis. Is it possible we, the misunderstood, underrepresented, overly-blamed, confused, exhausted, pain-racked Fibromyalgia patients of the world will be left with even less acceptance in the medical community? Less doctors with a responsibility to help us? No specialty to claim a field of study or channel of research?

Holy Mary Mother of God I had to get my rosary out and run a few decades! This was not good news, not at all. We can't take less, we need far more! How are people going to survive this illness in the changing world of healthcare and insurance and medicare? So many are hardly surviving it now. We don't have any give to spare! How do you make a school of medicine claim an illness? Is there a process, a petition? Are people already doing this? So I came home full of questions with no answers and a heavy sadness in my heart. This problem seems insurmountable, how to get adequate medical care and social services to Fibromyalgia patients. So many people have this illness but because of the stigma of it not being real, since it's a new variant to modern medicine, nobody wants to admit to it or talk about it. How many times can someone tell us our illness is our choice or all in our heads or because we are depressed or drug seekers before we just shut our mouths and go about our business, swallowing the pain of a thousand swords? For so many it doesn't take long. We have a problem friends, and I don't have any answers. Yet. But at least I now know why Mayo will no longer treat Fibro.

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Monday, October 8, 2012

Get A Second Opinion

Well let me tell you about the most awesomest and funnest roller coaster ride I had this weekend! My husband took my car to get an alignment on Saturday morning and then we went to the dog park. About 30 minutes after we drop it off the guy calls. Oh no, he can't align our car. The control arms are about to break off, all four of them, he says. All four struts are leaking too, and need to be replaced. So under the guise of not taking our $49 to do an alignment which won't stay aligned, he tells us to come pick up the car because he can't do the work until he can order the parts from the dealer on Monday. "What's the estimate," we ask. "$2,200," he says. So with a grave warning that driving the car will cause even more serious damage, like the wheels flying off as we cruise down the road, we pick it up and head toward home with our heads held low. Luckily we live across the street. My husband starts doing some research and becomes increasingly more confused. The "symptoms" of these problems, shimmying and shaking at high speeds, squealing and popping from turning the wheel, all the signs we need new control arms and struts, are simply not present. None of them. It just pulls a little to the right. So something is clearly not adding up.

Yesterday we took it to another shop. Didn't say anything more than we need an alignment. We wanted them to come to the same conclusion as Mr. $2,200 all on their own. However they call us a couple hours later and tell us to come pick it up, it's aligned. BUT we may want to take the right front tire in to get balanced because it is a little off. They could do it and charge us $15, but they know the shop we bought the tires from will do it for free. So now we are in full tactical alert and race over to pick it up, bogus $2,200 alignment estimate clutched in my hand, full of confusion and questions. Long story short the guy confirms there is absolutely nothing wrong with either the control arms or struts and actually laughs when he sees the bogus estimate. To say I wanted to give him a big kiss on the cheek is an understatement.

Couldn't be happier, oh no we could not. But the trauma we were under overnight thinking we had to come up with $2,200 we just don't have was pretty profound. Ultimately I decided to look at this as a big fat lesson on how things really could be worse and found a bucket of gratitude in my heart. Even if I wanted to clobber Mr. $2,200 with a caveman's bat really bad. My husband calls me this morning singing the praises of a second opinion. I tell him a story I am sure to have relayed at some point in the 13 years we have been together, but the lesson seems timely so I repeat myself. "Did you know my mom went to the doctor and he told her she had a huge tumor on her uterus and needed a full hysterectomy at the age of 23? She didn't have the money for the surgery so she went back to her parents house and went to her family doctor, trying to figure out what to do. He told her she did not have a uterine tumor at all, she was pregnant. Voila, here I am!" Moral of the story, sometimes money problems make you reevaluate your obstacles in ways you wouldn't if the cash was no big deal. And NEVER underestimate the necessity of a second opinion, especially when the symptoms don't match the proposed cure.

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Friday, October 5, 2012

Are Cancer Patients This Mean To Each Other?

People use The Fibromyalgia Fun House on facebook to ask questions pertaining to living and coping with Fibromyalgia in order to gain a cross section of answers. It's become a great source of information from people who actually live with the illness and thrills me to see so many coming together to offer support, encouragement and information to each other. Well the other day I had a question. Silly me, I don't know what came over me, but I guess I thought I had the right to ask it seeing as it's my page and all. I was hard at work updating The Fibromyalgia Crusade website and wanted to hear from patients who tried the "wellness" approach to managing Fibromyalgia, combined with modern medicine, and had absolutely no results or lessening of symptoms. By changing my life in a million different ways I was able to get out of the hell of unmanaged Fibro and recover a decent quality of life. But I know what works for one does not work for all and I wanted to hear from the patients who tried, but it didn't help. 

So I posted the question. Came back a few hours later to look at the responses and almost spit my chips over one of the comments. An individual wanted to know why I was asking. They told me how terrible I was for trying to sell a "miracle cure" for Fibromyalgia. Blowing smoke up their asses, I believe was the phrasing used. I was shocked to say the least. Miracle cure? What on earth was this person talking about? As I continued to read the annihilation of my character their motives didn't become any clearer. By the end of the comment this person had chewed me up and spit me out. Told me I was terribly selfish for trying to make a buck selling poor sick people a false cure. Judge, jury and executioner, I had been tried, convicted and hung in the court of this person's comment. But I was still very confused. I didn't mention a product, just asked a question. I never tried to sell anything, other than awareness bands and t-shirts, which according to my understanding of the laws of physics couldn't be construed as a miracle cure. Could it? I was very glad I wasn't in a sensitive mood or I might have taken this ridiculous tirade personally.

But this experience reminded me of one of my most shocking discoveries when I became active in the community, the utter lack of respect many patients have for other patients. It made me wonder if people with other illnesses are this mean to each other too? Does one cancer patient get mad at another because they have a different type of cancer? Or are in different stages at the point of diagnosis? If chemo or radiation works for one patient are they chastised and harangued by those it does not work for? What if someone catches it early enough, has it surgically removed and is cancer free? Are they told they didn't "really have cancer"? If they do all the treatments and do not recover, are they then told they didn't try hard enough? What about the patients who decide to include a wellness approach to their treatment, does a certain sector of the patient body declare them public enemy number one? I can only assume there are far more "miracle cures" out there for cancer than Fibromyalgia. For crying out loud it's a terminal illness! We are not the only ones people try to make a fast buck off of in our time of need. But just because this faction exists in the world does that give patients the right to treat each other with unprovoked disdain and hostility? I don't think so. I have a very hard time imagining a bevy of catfights erupting at a breast cancer walk because not every patient has the exact same experience or responds in the exact same way. 

I believe we will get so much further together than apart. We struggle to be taken seriously, not dismissed as depressed or told we are exaggerating a few muscle aches and sleepless nights. Massive differences exist in the patient body. Some are disabled, others work full time. Some got the flu and were left with Fibro, others have five other ailments in addition to Fibro. Not a one size fits all illness here folks! It is with perseverance and unity we will see a change in the way society reacts to our reality. It is with respect towards other patients we can learn and grow to figure out how to make Fibro fit around our lives, not our lives fit around Fibro. And it is with compassion toward others we can find the greatest respect for ourselves.  

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Wednesday, October 3, 2012

Snippy And Bitchy

Oh was I in a mood today. So snippy and bitchy I annoyed even myself. Kinda like in that movie Beetlejuice when a second head springs out of Michael Keaton's neck and says horrible things. All I  could do was stand there mortified and watch it happen. My dear husband finds himself privy to short tempered snaps and condescending reactions for anything and everything he does. How he puts up with me I just don't know. Hell, I can barely put up with me! It's hard to be nice while suffering...just plain hard. He is bearing the brunt of the emotional effects of my illness as much as I am. I believe that is what prompted him to turn to me in frustration this morning and say, "When you are on a new drug I feel like I am on a new drug!" Wow. I try to make a conscious effort to stay positive, and when I am in one of my "moods" stay as far away from him as possible. I know full well I can quickly turn into one critical nit-picking nightmare of a broad with little provocation. And he really does give me the space to get through it even though I know it hurts him when I withdraw. And once again that brings me back to that all too familiar feeling of guilt...always so much guilt!

On our latest Costco trip he suddenly stopped me mid-aisle and turned to look at me with love in his eyes, asking if I remembered when I was at my worst and we would get halfway (if that) through the three football-field sized mega cinder-block structure and I would throw on the brakes. I was so sick and there was so much stimulation and too much to choose from and way too much square footage to cover. I had hit my "wall" and was done. So we would leave the store, shopping half done, and head home to put me to sofa-rest. It was also during this phase that he would come home on his lunch break from work and carry multiple baskets of laundry down three flights of stairs so I could coin-op in our complex, too weak to do the job myself. He has picked up major slack in our lives to compensate for my illness, all the while holding jobs he did not like, fending off potential friendships because the reality of our financial situation could not afford new friendships, foregoing living his life because he did not want to live it without me right next to him...and continuing to love me and support me with all of his heart.

I believe we have made it as long as we have and through as much as we have because of sheer determination. We were a blessed match from the beginning, and despite many setbacks and wrench-dented roads we have not taken that gift and squandered it. He is a man of integrity and honor. We have worked so incredibly hard to put our relationship first and make it the priority of our lives. I feel like there are three of us in this marriage; me, my husband and the marriage. She has taken on her own identity and is the primary focus, coming long before our own individual needs. It is returning to this philosophy time and time again that allowed us to push through the rough patches and make it to the other side. But I have to give myself some credit here as well. When my health and sanity failed I spent the requisite amount of time wallowing in self-pity and misery, and then got mad and refused to play the victim, grasping onto the non-optional sheer determination that I was going to recover from this, I was going to get my life back. How much I could not tell, but was insisting on at least enough that I could exist in the outside world in some form or fashion. My quest to recover, or manage Fibromyalgia was/is long and tenuous, but I have restored a quality of life that I see so many searching so desperately for. This is not an illness that is managed easily. No doctor is going to give you a magic pill or prescription for absolute healing. Fibromyalgia is scientifically mysterious at this juncture in the practice of medicine, but that does not mean there are not ways to treat it and gain some life, passion and laughter back. I cannot tell you how to do it, we are all different and it affects each person individually. I can just tell you what I did and that it can be done. Oh yes I still struggle plenty, but when I take a second to pause and reflect am amazed that I can not only make it through the entirety of Costco but then come home and put everything away!

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This blog was originally published on 10/13/10.