Would you rather have fibro or lose a limb?
me: lose a limb in a heart beat.
Would you rather have fibro or be homeless?
me: wheres the nearest shelter?
Would you rather have fibro or have cancer?
me: with cancer, there's a fighting chance you'll survive and feel like a normal person again. cancer. in a heart beat.

The Diagnosis

March 9, 2011 I was diagnosed with Fibromyalgia. I was 31 years old,  just two weeks away from turning 32. I did not understand the gravity of the diagnosis when it spit from the physician's mouth. I did not know anything about it, except what Wikipedia.com explained and that I had every single symptom described on that website.  I knew it was bad,  I knew it was incurable, and I knew it was the cause for the emotional and physical demise of everything I was at that time.

That day, I died.

Okay, okay, I get it!  Using death to describe an illness that is not fatal nor life threatening is a bit dramatic. But to be fair, regardless of when my expiration date is stamped, Fibro is a life sentence, and like it or not, life as you knew it is over. Period. Exclamation point. Finito. Say goodbye to everything you knew, the pastimes you cherished, and all the little things that give you joy and peace in this world, because chances are, they're going to kick you right in the money maker and knock the wind out of you if you keep trying to pursue them. So suck it up, look and think back on those times fondly, and walk away.

Game over. It's time to start a new you.

Don't get me wrong, you don't have to give up on life when you get this diagnosis. I mean, you will want to! But you don't have to. I definitely had to give what seemed like everything up, and I wasn't expecting it. Not right away, at least. Truthfully, after that day in March, I just went right back to my business as if nothing had happened.


Getting the diagnosis was like losing my virginity.

You spend months building yourself up for the big day, wondering when it will happen, and poof! It's done. Nothing spectacular, but special none the less. The mystery was finally solved, and frankly it didn't meet or exceed my expectations. It simply was. And it brought me relief knowing I finally had an explanation, an answer! Finally the waiting was over.


But I wasn't changed.  I was simply at ease. I could finally stop searching. No more trips down the I-70 during the snowiest winter in decades. No more spending my days off at the doctors office in Timbuktu (HA! that's never the case!). No more  MRI's, pricking and poking, breathing and coughing on command.

In fact,  when you get the diagnosis it's pretty exciting, actually.  I was fortunate enough, to live in a state that had TWO Fibromyalgia Centers, specifically set up to help poor saps like me. And once we knew what was ailing me, I immediately was assigned a team of physician's to create for me my medical "plan of attack."
So that's what we did. We planned. However our "attack" was more like a fumble, tumble and crawl. But regardless we were headed in the right direction.

March 10, 2011:  Plan of attack: Go back to Fibromyalgia Center and take an additional 4 hours of tests to see where my current "state of health" was.

The poking and prodding never ends. But its necessary. That day, I sat down and went over my care plan-which is a great plan, in theory. You just need to have a capable case manager to see you through and be proactive enough to keep you focused on point during your moments of massive brain fog, pain, delirium, and confusion.

This is where my plan was born. And had I had the right support I may have seen some relief sooner than the many months later, but I suspect my case manager was very young at the time and new and I was too far gone to be proactive myself.  I think this is a plan many of you will find great success putting to practice, if you follow it carefully.

So pay attention. Here is thousands of dollars of free advice I've received.

1. Don't get Fibromyalgia.     There you go! Problem solved. Thank me later. =)

Okay, seriously, here is what you need to do (Legally I must state, I am not a practicing physician nor a licensed know-it-all to truthfully, legitimately be able to tell you what to do, so by following this plan you are willingly heeding the advice of a fibro fogged, unemployed, disabled, know-it-not, useless individual who has taken up blogging as a hobby since she is presently still bed ridden. OK so you can't sue me or anything if you get worse. Because you're dumb enough to listen to me.) :

1. Get a group of medical professionals to care for you. You do need a team, with a case manager or head physician overseeing your care plan. 

I tried this at a Fibromyalgia Center in my Rocky Mountain State. And since I have moved to beautiful sunny California, I am part of what they call an Integrative Medicine Center where the same plan is in effect. If you are curious about centers that offer this for you, contact me and I will Google away to see if we can find a similar program for you.

2. Your Care Team ideally should consist of:

A. Case Manager of Head Physician who will communicate with your other care providers to get you on a healthy path.

This is important so everyone is reporting on your progress or perhaps your bad days and reactions to treatments. If everyone is on board with what's going on with you, everyone will be able to better "fix you up."

B. Nurtitionist/Dietition FOOD IS MEDICINE! Diet is everything.
Please for the love of God, I don't care how awesome those painkillers, and drugs, and sedatives are that those doctors are giving you. Put them away.  The sooner you subscribe to this the happier and better you will feel.
Listen, I know all about those pretty little pills they're popping down your throat. And they're so eager to prescribe them to you every month, because Western Medicine is there to treat the symptom not the problem. Those pills are simply masking your misery. You want that misery alleviated, stop taking them (but consult your doctor on how to stop safely and do it when you are ready). I was taking over 30 a day, I was in this trap. No one knows how bad you feel, and how bad those are as I do. You are making yourself worse. Alternatives exist for a better health and a better you and its in food, diet, supplements, vitamins--that stuff in your body! Ok, moving on.

C. MIND and BODY Therapist: This is your acupuncturist, your masseuse, your yoga instructor, your stress management instructor, your meditation leader. This is the answer. Right here. Once you start building your body's fundamental blocks back, so you are in operating mode again (granted it will be a very sleepy operating mode), the above is going to offer you some of the greatest tools to fight this life changing, life sucking disease. Learn to manage pain, learn to manage stress, learn how to better  your sleep habits, and relax your body. Get back to your body, mind and spirit.

D. Psychiatrist/Psychologist:  Sorry. I know it's like saying get a Lawyer. Honestly, I don't want to talk to about my feelings with anyone I have to pay. Frankly, I only confide in my husband and my mother.  And I get bored listening to myself. But, we have to do this. I will be honest, I have not done the talk therapy yet. I do have a Psychiatrist, who initially prescribed me all sort of antidepressants: Cymbalta and Effexor XR. Up until last month, I would see him every two months. My guess many of you are on similar drugs. I highly suggest having a shrink prescribe you those, versus a GP.  I is the Psychiatrist's job to know all these types of medications and their treatments, their good and bad effects, and their long term effect. I beg you to NOT get onto Effexor until you read the warnings. It is literally has the worst withdrawal when getting off I have ever experienced.  I will stop now on this topic. But have one of the above. I have someone in my Integrative Medicine Panel that provides me with Biofeedback. This is an excellent tool in knowing what triggers your "stress" moments etc. When you know, you change your associations with the event and learn to self-control. Please look into it.

E. Exercise  This is all you and me. You could get a Person Trainer or Physical Therapist.  I had the latter and he made me worse. So now I take myself out. Mostly these days, I walk. I have been very bad and "flared up" for about two months now--I'll explain those months and the reasons next time--but walking does wonders for me. Its not what I would like to be doing, for instance I'd rather be snowboarding, hiking the mountains, swimming, trying to learn to surf with my husband, riding my townie, cross country skiing etc., basically all the things I used to do a year ago. But those will come, in time.
For now, we walk. Every day, I walk. Thirty minutes, around the block, on the beach, in the yard, through the stores and shops. Walk, Move, Walk, Stretch, Walk. The more you and I sit, in a fibro state, the more the pain, the greater the cramping, the worse the migraine. That's the catch 22 of this disease, you feel like complete and total crap, but you must move.

About Moving and Exercise. It's important I revisit this, because exercise is critical but its a very fragile idea in the fibro world.
In April of 2011, when I was in truly at my worst with this disease, exercise was not an option for me. I had my team of doctors at the Fibromyalgia Center instructing me on what I could and could not do, or probably better put, should and should not do.
One of those things was focused on exercise. At that stage of my disease and diagnosis, I was suffering from brutally severe Fibromyalgia. My Epstein Barr Virus level had peaked, right around my birthday in late March, so because I already had Mono in my twenties, I could not have it again. But my body essentially felt like it had Mono. As I understood the doctor's explanation-the virus always lays dormant in our bodies if we have been exposed to or had Mono for the first time, but when you get so weak, and your body is fighting virus after virus, like in the case of severe Fibro, it can peak and get active again. This is all per my Physician-and it confused me so if it sounds off or weird, look and research it on your own. Either way I felt like shit.
At this state, my vascular system was also compromised. Meaning basically, my body was in "Fight or Flight" mode for months!

Think about this. This could be you, right now, if you are at your very worst state of this effed disease.

"Fight or Flight" Fibro's way of bringing you down. To paint the picture of my system last April:  I have an active, peaked E.B. Virus stirring the immune system pot. My body is 100% fibro flared, pain is pinging and dinging all over the place, I am in complete and total insomnia that two ambien a night won't fix,  my body won't let me heal, and this cycle won't let me break from the pain and the misery in my head. I am completely confused, have no short term memory at this point, and am literally lost in a fibro fog.

I can not walk from my office to the stairs-which was 30 feet-without stopping to sit at the receptionist's desk to catch my breath or keep me from collapsing.  I could not shower without sitting down for months. My vascular system is in "Fight or Flight" mode, and it is essentially telling me to FLY!  I was told it is restricting my vessels and capillaries, so I am not getting the oxygen supply I need into my body, but particularly my brain. In fact sitting in an Hyperbaric Oxygen Chamber was one of my "therapies" because I did not have sufficient oxygen saturation in my blood at this time.

So clearly, I can not exercise like this. I can not do anything like this. I was told if I got my heart rate exceeded 130 for longer than 30 minutes at one time, I could pass out.

130! Really? I lived at 10,000 feet in a ski town. That is NOTHING! And suddenly, that sounds like an intense challenge for me to even get it up that high. And to last 30 whole minutes! Are you kidding me? I would forget what the hell I was doing after 10.

So exercise is not for everyone, right away, until you have a serious discussion with your doctor about your current medical state.

April showers bring May flowers.  I am so relieved to have lived through April and to be nearly a year away from it. God that month was terrible. Really, all the months since my diagnosis have been less than amazing, but that's for another time.

I'll board the memory lane train next time with regards to going right back to work with the diagnosis of severe fibromyalgia, having no useful support (AT FIRST) from my spouse and employers, and what caused me to pack up my life, husband and all one month later to live with my parents, where I still reside today.

I am not the Golden Girl for Fibro. It sucks. I would  bitch and moan about it all day if I knew it wouldn't make you uncomfortable and leave everyone completely bored.  And frankly, I really don't want to bitch about it. But when all your days, every single day, is consumed with pain and the focus of "getting better" it is hard not bitch a little here and there. Especially when you get out of the fog of denial and realize this day, right now may be my "better."

I am flared terribly today. But I am starting to figure out what causes the bad days, the worst days, and how to get back the good days. This disease sucks. It's true and I am not going to blow smoke and pretend it doesn't.

I am not going to sit here, and act like I am too tough to let Fibro phase me. I am not that person who professes their strength and empowerment from the disease. I don't buy that.

Frankly, I am not going to post something on my Twitter account (www.twitter.com/callinginfibro) that shows I am too "positive for fibro, and living my life anyway!" I am not here to be the Golden Girl of this disease.

I am here to be real about it. It does get better.  It also gets worse.

I hear you can put your symptoms into remission. I hear you can control the pain with diet and exercise. I hear lots of things. But we all are different, and many of you have additional diseases that contribute to the Fibro.

I'm not here to get into a pissing match of who is worse off. In the end, its bad all the around. And all any of us want--those of us suffering from this--are answers. Tips. Maybe some laughs,  to connect, to relate, to bitch and to moan and more than anything some hope.

What I want is some inspiration from those who died, and came back to life. Reinvented life. Because that's what I want. And I am trying really hard to get there. And I won't quit, but I won't lie and put on a tough face like it's nothing to do it. Like it's okay this happened to me. Because it's not. And it didn't just happen to me. It happened to my husband. My parents. My friends. My bosses. My clients. And it will continue to happen to every new individual who stupidly, blindly enters my life (run now!).
But there's no stopping it.

I hope my blog offers something useful to somebody out there. And if it doesn't that's fine because simply writing it, gives me a little bit of my life back, that I really dearly miss.


Two months ago, I couldn't sit down and write a five sentence letter without getting a migraine. So I guess things are looking up right now. Today anyway.

Thank you for visiting my blog. This is a very personal record of my journey into the world of Chronic Illness and Disease. I was diagnosed with Fibromyalgia at 31. In the course of 6 weeks following my diagnosis, I lost my job, my independence and my ability to live life without limits. You will find I lose my "voice" for nearly 9 months. The disease progressively took over and I had no desire to write about something that was destroying me on a daily basis. Now, January 2012, nearly 10 months after my first entry, I am back and ready to journal the ups and downs, the diets, the treatments, the wacky experiments seeking a pain free, energy filled existence. It is my hope this blog will provide some comfort for many of you suffering from this (explicative) disease. If there is one thing I have found, there are too few resources readily available with answers on Fibromyalgia. Western Medicine is quick to prescribe you an army of medication, hippie fueled newsletters are quick to tell you are poisoning yourself with food and lifestyle choices. Both of these can help us get better, but neither ultimately and solely hold the answer for us. Hopefully, through this journal, I can do the suffering for most of you and tell you the "do's and do not's."
Please be warned, bitching and moaning will go hand in hand with this blog. Its par for the course, after all this SUCKS!  But  to be fair there wil be no shortage of rejoicing in the good days and embracing any glimpse of a silver lining.
So consider this a resurrection of the initial intent of this blog.