Are You Ready For The Fight Of Your Life?

That's what it took me to have anything resembling a quality of life after Fibromyalgia knocked on my door and wormed its slimy miserable self into my life. This is what Fibromyalgia taught me about itself:

1) It will not kill me, no matter how badly I want it to

2) It will take everything from me if I let it

3) There is a significant amount of self-pity, fear & depression I had to go through to begin to see clearly

4) This is absolutely something the 5 Stages of Grief applied to, but my order was a bit different:

•  DENIAL- Doctor after doctor telling me there is nothing wrong with me and it's all in my head, and part of me believing them because this makes absolutely no sense.
• BARGAINING- With myself to just get over it already! And with those I love, work with & am friends with to understand what is happening is indeed real. 
• DEPRESSION- Because this is real and I am no longer functioning like a normal person. The guilt, anger, frustration, panic, sorrow, anguish and pure unbearable pain take over. If that's not depressing I don't know what is.
• ACCEPTANCE- This is real, this is happening to me, and I have to do something about it. No doctor or drug or treatment will wave its magic wand and take it away. For whatever reason this is the course my life has taken and I can lay down and take it or fight to see another day.
• ANGER- (by far my most favorite) GO TO HELL FIBROMYALGIA! You have stripped me bare, destroyed my life, my light, my laughter, my security, my relationships and I am not giving you any more of me. So if it is the last thing I do on God's green earth I will get something close to a quality of life back...

And that is when it really got interesting. Without the fight, without the anger, I do not believe I ever would have recovered to the point of "managed".  I could not comprehend how at the age of 28 the rest of my life was going to be spent a disabled invalid. But how does a person that is in so much pain find fight? How does someone who has been broken down, beaten and pulverized into mush re-construct their mental fortitude enough to insist on repairing their broken body, soul and psyche? Getting Fibromyalgia managed was without a doubt the hardest thing I have ever gone through in my entire life. The disease itself is bad enough, but the doubt and lack of compassion from the world at large creeps deep into the heart of a person and inflicts wounds so broad and scaring they are darn near impossible to recover from. As a person looses their ability to work and support themselves, parent their children, engage with their significant other, maintain friendships, perform basic duties (like showering and making the bed), participate in a social life, laugh, play or love, the despair and hopelessness can swallow you whole! 

There were people who criticized me harshly for stepping outside the confines of modern medicine and embracing a holistic approach. Those same people would be sitting here doubting the validity of my illness today if I were still that crumbling, quivering, unable to function mess of a woman. But I am not. I charted my own course, forged ahead, learned how to stop giving a rats-woo-ha about what anyone else thought. I ceased to look for acceptance and approval where none was to be found and clung to strength and hope I did not know I possessed. I grabbed my life, shook it silly, believed in myself and forged on to build a better tomorrow. I kept "interviewing" doctors until I found one that believed me and listened to me. I let the world know I was  hurting, but working on making it better. Projected a life of confused sanity, not sloppy despair. My worst doctor appointments were the desperate ones. The ones where I went in crying, needing, forlorn for help, only to be dismissed and turned away. See they don't know what to do with us, we are messy and complicated. Our diseases are too new to their scientific realm so therefore are dismissed. But let me ask you one question. Will medicine or science ever progress or discover anything new? Of course it will! And one day we will be understood. Till then, do the best you can, love yourself and believe in a better tomorrow, for if you don't it will never come.

Thanks for joining,
Leah

This blog was originally published on 8/27/10.

Guilty As Charged

I am quite upset about something relatively minor in the grand scheme of life, but still kinda a big deal to my here and now. Last fall I got one of those photo-radar tickets everyone is in such an uproar about. I was speeding my way home from getting my blood drawn and they nabbed me. However, I did not receive this ticket in the mail until this January. Well I sure learned what that uproar everyone was all upset about is, considering the date for me to have addressed this matter had long since come and gone. After verifying there was not a warrant out for my arrest I petitioned the court for an extension to complete traffic school and it was granted. And then I proceeded to spend the last month, much like most of my months since I had the strokes, flipping inside-out and upside-down about every single challenge, big and small alike, I encounter on a daily basis. 

By the time I looked at the paperwork from the court close enough I was within seven days of my court date, and I didn't even know they did this, but traffic school would not let me attend! So I flipped. Kinda. Because I realized all the flipping out I have done in the last month over issues which either work themselves out or go on to become what they are, well, its distracted me from doing something quite important. Going to traffic school! This made me sad. And mad. At Fibromyalgia, me, my life, my many other sicknesses, our financial issues, familial issues, marital issues, pretty much everything that has taken precedent over me taking care of me. Or more to the point, I have allowed to take precedent.

So I made a decision. To pick myself up by the bootstraps of my big girl panties and deal with it. Pay the fine, take the hit on my driving record and not freak out. The world will not cease to orbit on its axis over this one. I know I can't go head to head with a judge to get it extended because I really have no good excuse, or one that would not raise question to my right to have a drivers license in the first place. So it is today I truly learned the meaning of the phase choose your battles. I don't have a toddler or teenager to have taught me this lesson already, and quite frankly in marriage think it only leads to resentment. But I have not been picking my battles in life. I have forgotten how to roll things off my back, not take everything personally, ignore the bullshit and laugh in the face of absurdity. You know, not sweat the small stuff. Because at the end of the day very few things are not the small stuff.

Thanks for joining,

Leah

The Little White Pill

One cold and painful night, many many moons ago, I stood staring at the little white pain pill sitting on the counter top laughing at me. I needed the pill, for I was in pure physical agony of the kind only Fibromyalgia can deliver. But I lived on the pill in order to get through work and life and quite frankly, it sucked. I was moody, bitchy, short-tempered, nauseous and constipated. And those were my good days. There were days my pain was so bad I could not take enough to damper it and still expect to live. So on top of being moody, bitchy, short-tempered, nauseous and constipated I was also in writhing misery. Fire coursing through my extremities. There were days off of work where I simply could not take the pill that day, just could not take the side-effects, and condemned myself to lying in bed sobbing at the torturous injustice of it all for twelve hours straight.

Oh yes, that little oval Percocet and I danced every dance, boxed every match, battled every tune. When I was healthy prescription narcotics were something a person took for a short while after surgery or a car accident. Anyone else was thought of as "dependent" or sometimes more specifically "an addict". Judged and condemned without need for an explanation. So how on earth did I find myself at the age of 30 going through over 100 of these nasty little bastards a month? Me? How? I was a party girl in high-school and college but that was long behind me and this was certainly no party. I was an adult with a career and husband and a life full of promise and potential! At least before this pain started I was.

Well the more determined I became to not need the little white pill the more I needed it. Oh such a lose-lose situation, no winner allowed. One of my driving forces behind getting Fibromyalgia "managed" was to get off these suckers. I was living a dulled-out, vacant half-life but also needed to work to support myself. Believe it or not moody, bitchy, short-tempered, nauseous and constipated accomplished working a job far better than unmanaged Fibromyalgia pain did. And I learned a thing or two along the way. The more you take, the more you need. Narcotics create more pain receptors, actually increasing the pain. Hence the need for a larger dose, ie. addiction. I also learned when taking a medication prescribed for a condition by a treating doctor a person is not an addict. I was worried about this one so I asked my doctor. He asked me if I was breaking into cars to steal stereos to pay to obtain drugs illegally off the street. When I answered no he reassured me I was not addicted. I also learned living on them for the rest of my life would most likely severely compromise my internal organs and shorten my life. So I set about figuring out how to get off them. I don't take anymore than a few pills a month for severe breakthrough pain these days. Whenever I wake up the next day I thank God I don't have to live on them anymore. I also learned I would have never gotten here, not needing them, without them. They were part of the treatment plan that got me here. In so many more ways than one.

Thanks for joining,

Leah

Getting Off Cymbalta

Cymbalta is without a doubt one of the worst medications I've had the horror of coming off of. It was prescribed while I was in the hospital during my last pancreas attack in 2007 to combat the pain I was using Percocet to manage. My hospitalization was an awful experience over all. Then a few days after starting Cymbalta, I felt this sticky sweat cover my body. It made me feel gross and clammy. I was in the hospital for six days and thought it was being there that was inducing that nasty slick. But upon returning home, I could not get away from it. I could not sleep without waking up drenched, constantly felt dirty, and was sweating out of my head profusely.

That one was really helpful for good hair days. One evening while at my aunt's house for dinner, I had to blow dry my scalp three separate times because my head was soaked. I looked like a menopausal, wet dog sitting at the dinner table fanning my head while everyone stared at thirty-one-year-old me. I was not aware this was a documented side-effect of Cymbalta until I was perusing through Prevention magazine one evening and started reading the fine print on the drug's advertisement. It was like a light bulb went off. So that's what all the sweating was about!

I suppose it helped with the pain, although there wasn't a marked difference and I was still taking narcotics daily to get through work and life. Desperate for anything to damper the throbbing, stabbing, aching fire that coursed through my body, I stayed on the drug for two years. Eventually my pain was managed with high doses of Lyrica. Thanks to my doctor's refusal to prescribe, I was off Percocet entirely.

But I gained serious weight while being on those drugs. More than fifty pounds. My complaints to my doctor fell on deaf ears. I was paranoid I was going to have another pancreas attack. He told me I would never get off Lyrica or Cymbalta. Instead, he instructed me to go on a medically supervised starvation diet and gave me a referral to a bariatric surgeon. Whoa! Are you kidding me? Get my stomach stapled because he had no idea how to treat my conditions and didn't want to prescribe narcotics? Sadly this was not the first time I realized "do no harm" was decidedly not at play for this chronic pain patient.

So I went on a holy quest to get off as many medications as possible. I blamed them for my weight gain and feared the consequences a lifetime of taking prescription drugs would have on my organs. Cymbalta was my first attack. I tapered down to half a dose. After about a month I stopped entirely. Oh, I really should've cut the half in half, but it was a name brand prescription and too expensive.

Well, shortly after stopping, I started feeling withdrawal symptoms I can only assume are like coming off some hard-core drug. Inside I felt like a telephone wire cut in half by lightening, whipping and snaking in the air, cracking electricity with every contact. It would course through my veins and cause me to twitch and tremble. I felt like an eel, a shorted wire, a wet plug, in a word ELECTRIC.

I was moody and grouchy and angry and frustrated and negative. Emotional garbage came pouring out as I became consumed with every injustice ever inflicted upon me, intentional or otherwise. I cut off contact with family and friends. The pure anger oozing out of me was so great, I couldn't differentiate what was real and what was a magnified perception from the withdrawal. I sat at my computer and wrote and wrote and wrote, getting it all out, feeling justified and victimized and wronged. I became extremely negative at work and borderline suicidal. I started seeing a therapist again because I was fearful of my actions without honest accountability to another person.

What I glean now from this experience is Cymbalta was masking psychosis from Lyrica, and once I was off Cymbalta the full experience of Lyrica took over. At this point I'd fired Dr. Stomach Staple and was with my new doctor at the Mayo Clinic. She upped Welbutrin to help my anxiety and quickly switched me off Lyrica and back on Neurontin (gabapentin). I began to feel better emotionally and mentally, but of course never anything easy, the pain came back. I started loosing weight, though. Guess I didn't need that bariatric surgeon after all.

I have tried darn near everything out there to manage this disease that is so unbelievably destructive to living a decent life. Drugs, diet, exercise, supplements, acupuncture, more drugs, stress management, lifestyle management, disability, physical therapy, more supplements then anyone could possibly imagine, working barely part-time, more drugs, rearranging my priorities and expectations, moving to a warm-weather climate, serious sleep management... Oh you name it, and I have tried it.

And my fibromyalgia is managed! I can work, love, laugh and savor a little. No, I'm not the woman I was before I got sick. But even though I had my physical health then, I am much more mentally and emotionally full now. I am clear in mind and conscious. I know what I need out of life, where to put my priorities to get it done, and what to just plain ignore because it will do nothing but suck me down. We are all different and each fibromyalgia patient must keep trying until they find the right combination of lifestyle and medical management to get their life back. But as for me, Cymbalta, we are broken up, never getting back together again, and I am sorry I ever met you!

Thanks for joining,

Leah

Originally published in August of 2010

S#%t And Sleep

Communicating with Fibromyalgia patients and observing the many stages each and every person goes through as they navigate life with this nightmare of an illness triggers major flashbacks for me. Different people, varying root causes, separate co-mingling conditions, but we all experience the pure misery of a sickness they don't know why we get and certainly don't know how to cure. Little lightbulbs like the twinkling dance of blinking Christmas decorations pop off and on as memories long forgotten rise to the surface of my conscious. Time and time again I answer a question with, "Holy shazam, I totally forgot about it but that happened to me too!" Two major issues impeding my ability to get Fibromyalgia managed were my sleep deficiencies and, ahem, bathroom problems.

I was a small little person trapped between two big thick walls crushing together. The walls of life and sickness. They did not get along, could not meet in the middle and made mincemeat of all unfortunate enough to be caught in their path. I was finally crushed to smithereens between them on September 6, 2006. Raging insomnia, excruciating pain and mental anguish consumed me. I cancelled the sleep study it had taken a whole year to obtain a referral for because I broke down. Bad. I saw no point in living. Same reasons I have gone over in every other blog; anger, pain, frustration, sickness, guilt, panic, fear...it goes on. I was free-falling and the deeper I went the less I cared enough to hang on, the less there was to grab at. I was not suicidal, but it was the first time a complete and overwhelming loss of hope rationalized the will to live as unnecessary. It took a breakdown of this proportion before I finally took this illness seriously, accepted it was not going away no matter how much I willed it to, and it was up to me to figure this out. I got the medical help I needed and started sleeping. And I dreamed! It had been years. Many years. But suddenly strange, odd and sometimes disturbing visions filled my nighttime slumber. My unconscious had found its filter and and trapped images exploded through my brain and out my head. I know now that sleep disturbance, unrecognized by me and medicine alike, was the shotgun at the start of the race to the Fibromyalgia finish line for me, genetics notwithstanding.

So I was sleeping and doing a lot better, but still not well, at all. I was constricted. So stiff, puffy, painful to the touch. It felt like one gentle poke would burst my skin open like an overstuffed sausage casing. I was on Lyrica and gaining 10lbs. a month. Full of toxicity, distorted, swollen, grogging through quicksand, my digestive system was free of the candida imbalance which caused IBS but was still not function properly. I went to dinner at a friend's house and her mom was going on and on about getting a colonic. It dawned on me all the drugs I had been on, dead sickness inside me, the fermented toxins settling in my cells and tissues, none of it had a way to get out. But I was not quite ready to have somebody stick a  tube up my butt to suck it all out either. I did many cleanses, got off the drug obviously not fit for me and started eating healthier, even walking again. Vegetables were good, psyllium husks even better. Slowly but surely as I cut out processed foods my stomach stopped swelling after every meal and elimination became regular. The puffiness came down and there was a marked difference in my quality of life. Now I was sleeping (repairing) and eliminating (toxicity removal) and the energy in my body was flowing. At this point I could actually move forward with the many other layers of healing my dear little central nervous system required. I was now free to set out to repair everything else it had demolished on its way to breaking down.

Thanks for joining,

Leah

Assessing My Priorities

"I never think of the future. It comes soon enough." 

-Albert Einstein

Some family came to town this past weekend. We had fun, hanging out and catching up and laying by the pool drinking Moscow Mules. Oddly enough, as we relaxed and unwound, I was a bit surprised to discover I was not fighting with my husband. At all. Which was a bit unusual considering that has damn near become our default these last few months. As that tightly wound ball of stress, expectation and self-flagellation relaxed and unwound inside me I realized there was a marked difference in my perceptions and reactions. Because I was not stressed out! The more relaxed, and quite frankly myself, I became the more I noticed a massive disconnection from the person I am, and the person I have become. As the weekend ended we bode our fond farewell and came back to our life. I was determined to maintain this awareness and figure out how to change my reality. 

But Monday morning came, as it eventually does, and I was horrified to wake up the same me I have been lately! My reality and expectation and stress was sitting there waiting for me. Nothing had changed. I just had a little break and wanted more. So of course I dived in head first, for that is what I usually do. But I whined all day about how my reality and me, we are stretched too thin! I am overcommitted. I am doing too much. How do I change this? What do I give up? These thoughts whirled around my head all day as I fought with my hand, arm, shoulder and neck to release the vice-grip of shooting pain they were paralyzed in, rendering me unable to type. I got so frustrated I just took a nap, knowing all this would be there for me when I woke up, but hopefully I would be in a better mood.

Finally I gained my perspective. I am stretched too thin, way too hard on myself and have too much on my plate. But I am not willing to give any of it up. I blog, am writing a book, proudly run The Fibromyalgia Crusade and of course admin The Fibromyalgia Fun House on Facebook. That takes up an awful lot of time. I am also a full-time housewife, puppy mom, patient and last but not least a girl that cares about my appearance. But I have to figure out a way to not be so uptight and miserable, stressed out and racing around getting nothing done because everything feels like it is crushing in around me. And finally the light bulb of my brain lit up and I realized how to do this. Keep my hands in all these honey pots without going completely nuts. I need to slow down! I can still do all of this, I can. But it's just going to take me a lot longer to get everything done. Back in the days of yore when I was in interior design school I learned clients want three things. Fast, inexpensive and quality. And any designer worth their salt would inform the client two are possible. Fast and quality? It's not gonna be cheap. Inexpensive and fast? Don't expect marvelous quality. And inexpensive with quality? Oh it's gonna take a long time. I, my friends, am okay with it taking a long time. I just need to go mediated now to re-learn to live in the moment, not spend today obsessing about what might happen three days from now.

Thanks for joining,

Leah