The Most Difficult And Final Decision Of One’s Life


Several months ago I made a You Tube video on the escalated suicide rates of Fibromyalgia patients. Fibro patients are 8 to 10 times higher than the average population to commit suicide. I understand why. Living life with this monster is horrible and it derails the Fibromite’s life. It destroys dreams. For many of us it completely disables us. I know I am not alone when I state for many of us our families even abandon us. They see our illness as fake or worse, perhaps they are afraid of the genetic ramifications of what may happen to them one day and choose to go into denial.  As I stated in my last post, for many, it is an existence more than a life. I also stated, the good news is, it is not life threatening. The bad news is, it is not life threatening.

Unless you have been in outer Mongolia or just do not listen, read or keep up with current events, I am sure you have heard about the beautiful Brittany Maynard. Unless she has a change of heart, she is going to die this Saturday, November 1st. She is going to get into her bed, surround herself with loved ones, play music she loves and take two pills prescribed by her Doctors. These are suicide pills. Brittany has terminal brain cancer and is determined to die on her terms instead of letting the cancer take its course. 


I do not get life. I do not get why people inject toxic drugs for a 'high': destroying their otherwise healthy body. I do not get why a beautiful woman of 29 years old (the same age as my oldest beautiful daughter) has to have such a horrific terminal illness. I do not blame God. I just think things like this are not for us to understand on this earth. Still, I am not 100% sure how I feel about 'dying with dignity' at THIS STAGE in her illness.

I do not get life. I do not get why people inject toxic drugs for a ‘high’: destroying their otherwise healthy body. I do not get why a beautiful woman of 29 years old has to have such a horrific terminal illness. I do not blame God. I just think things like this are not for us to understand on this earth. Still, I am not 100% sure how I feel about ‘dying with dignity’ at THIS STAGE in her illness.

I know Matt Walsh attacked Brittany for her decision. And honestly, Matt Walsh can get on my last nerve. He can be very preachy. He obviously has never lived with an illness of any magnitude nor has he been faced with a sentence of pain, suffering and a life that is existing, being deserted by loved ones who cannot take your illness and being saddled with hundreds of thousands of dollars in medical bills. What does he care if this girl opts out? The sad truth is she is going to die. If not now, in the next few months. My problem is, she seems to still be at a functioning level that is manageable. I have no problem with ‘death with dignity’ in the end stages when the patient is in so much pain that they are crying out for help. I have no problem in the end when they are days or hours away. We all know many Doctors have given just a bit extra morphine to ‘help speed it up’ to end the suffering. By all means, when it is getting to that stage, take the pills. If I were a sister, friend or yes, even her Mother, I would not stand in her way in the end when it is pain, suffering and just sheer hell.  The problem I have now, if she can travel to the Grand Canyon, why ‘pick a date’. Why not just wait until things get to the point where they are unbearable. Look at Valarie Harper. She has outlived her ‘expiration date’ by a few years now. And if I am doing the math right, Brittany has already passed hers by a few months. I realize she has headaches and is having seizures but it is clear things are not to the point where she is unable to have joy and happiness in her life. Britt3So how does this all relate to a Fibromyalgia blog? It goes back to the escalated suicide rates. I often wonder why so little press is given to an illness that is so disabling and life shattering. I wonder why so little education is spread about an illness that literally drives people to want to die…. not because they have a death wish but because they cannot take the day in and day out pain anymore. This is an illness that most Fibromites I know have been shunned by loved ones, myself included. Ex-extended family used to gossip that I was faking and making it up to gain attention. I am not sure how a scan showing muscle spasms so bad that it was (20 years ago) pulling my c-spine in a near backwards motion can be made up. Wow, if I can will my body to have that kind of powerful muscle spasm and now the knots that require 2-3 injections a month, call The Learning Channel. I want my own reality show…. “The Woman That Can Make Her Body Do Anything”. At least then I can make some money out of this hell I live day in and day out. It is impossible to fake muscle spasms. On top of that, my cervical spine is wrecked and can clearly be seen on scans. Can numerous scans be faked? If so again, call The Learning Channel, darn it, I want that show!

So does dying with dignity spill over to a condition that wreaks havoc the way Fibromyalgia does? Where do we draw lines in the sand? We get chastised and left in the dust if we express that we do not feel good. We are assumed to feel fine if we say nothing. When people do end their life people say, “Why did they not reach out for help?”. I have been called a ‘mentally ill drug addict’ by someone in the world that I would lay my life down for. It is cruel and hate filled. I know I am neither of those and so do those that truly care for me. And I know where it is coming from…. or should I say who it is coming from. But coping with this condition is hard enough without taking that kind of abuse from someone that you have moved Heaven and earth for. So you begin to think, ‘why bother?’. ‘Why do I fight to maintain if the people I love are going to treat me that way?’ And honestly, I made the video in hopes of helping someone contemplating suicide. Fibro is painful, but no, it is not a death sentence. So where do we find the balance when our lives are already so filled with pain and challenge? How do we keep morale up and the will to live not just for each other but for ourselves? Britt4Sadly,  I do not have any magical answers. I do know Brittany is lucky because her family has stuck firm, by her side. That is a gift no matter what your expiration date is. I do know karma is a lovely lady and she always, always comes around and delivers to those what they give. So for those who think it is their purpose, mission and goal in life to deliver ‘justice’, just remember, no one has that right except for our Creator. I do know that with Fibro many days are bad, some days are tough and some days are bearable. We do not know what is coming tomorrow. We do not know what medical breakthroughs are around the corner. So for Fibromites, is it fair to have this? No! It sucks. I have had Fibro 40% of my life and I would be bold faced lying if I said I have not considered suicide on more than one occasion. And NO I am NOT suicidal. I am going to repeat that. No, I AM NOT SUICIDAL. Having considered something at one time or several times does not mean you are considering it now. I have two very important little reasons for wanting to stay on this earth. And they love me just as I am for who I am. No judgements.

Death in two prescription bottles? Sounds surreal but that is exactly what it is.

Death in a prescription bottle? Sounds surreal but that is exactly what it is.

Time is a thief. One day you are a child, the next day a Grandparent. Last week Brittany Maynard was at the Grand Canyon and within a week’s time was to take her suicide pills? The latest reports now say perhaps a change of heart is at hand and she may postpone her original expiration date. I really hope so.

With Fibro it seems to extend into months and years. And flares. The famous flares. Or bouts. How about a bout of Cellulitis, 2 antibiotics, a pounding headache that won’t let up for weeks and you cannot remember the last time you slept in a bed.

And NO…. Fibromyalgia is NOT terminal brain cancer nor do I allude it to be. But if you look several comments ago, the most profound comment…. the most memorable comment I have ever gotten from a reader of this blog was from a cancer patient. She had gone two bouts with cancer. She said she would rather fight cancer than Fibromyalgia. Wow. Paul and I often talk about this. Why? We think it is this: with cancer there are two outcomes: You beat it and go on to live a normal life OR you go to God. Paul wrote a post about being a caregiver. He knows what it is like to watch a loved one live this hell that is Fibromyalgia, year after year after year.

I wish I had magic answers for everyone. And I realize this blog post feels more like a “Cat In The Hat” riddle than a statement in places. Perhaps it is because I am so heartbroken for Brittany and her family. Perhaps it is because I want her to wait just a bit longer. I get it, trust me, I do! But going in and laying down on a date you hypothetically pick out because ‘it sounds good’? Why? Why not just take a day at a time. When it is the ‘right’ time (excuse my lack of better wording) you will know or at least as best you can. If I have a plea to Brittany, that is it I suppose. Because trust someone who feels at death’s door most of the time, life is precious. Each and every moment that you can grab is precious. I can have the worst day and then as Paul and I settle down for the night, something will happen and we will have a full on belly laugh! I will be meeting one of my two best friends for the first time in a few weeks. We both struggle with chronic illnesses but even if we have a few days where we can only chill and stay home, I vow to cherish each moment with my precious Jenn. I get to hug her and laugh without it having to be through the computer monitor of a Skype session (and trust me, I am not complaining, I am thankful for Skype!). I had a wonderful Sunday with my precious Grandbabies having Halloween fun. And then I slept until morning. And I would not have it any other way. You know it is funny. My daughter…. such a precious, wonderful young lady that I am so, so proud of, always apologizes about goldfish cracker crumbs and little things that need to be tidied up. But I cannot seem to make her realize, the crumbs and toys tell Paul and me that our precious Grandbabies were here and had a good time! And I would have it no other way! We are going to blink and they will be in High School. Yes, I hurt and my life can be hell. But if I had to opt for one of the other, I will take the life of pain and even if in a wheelchair at some point, I would rather be here in this pain and see these two perfect little people grow up. So we must grab on and take these moments…. hold onto them for you, for your loved ones and for those of us that choose to dredge on because we don’t have an opt out button. Godspeed Brittany. Whatever you decide to do and whenever you decide to do it, my heart aches for you. You are young and beautiful and do not deserve this. But I hope and pray you wait just a bit longer because I know you have some good days in there.

I dedicate this post to all people suffering from any form of terminal illness, any form of cancer or other serious and/or life threatening illnesses that they are fighting with all they have including a very kind and dear Facebook friend of mine who I shall keep private and just call him “J” and those suffering from any form of chronic illness that interferes with daily life and has taken a toll on their relationships and quality of life.

“So it’s goodnight, things go wrong
But it’s alright
We’re all just passin’ through here
At the speed of light”     Celeste Prince, “Wherever You Are”

The link to my video on You Tube for Suicide Prevention:

Fibromyalgia, For Many It Is Not A Life, It Is An Existence

exist1I was quite young when I was diagnosed with Fibromyalgia. I was initially told I had a chronic condition called Fibrositis. Of course as time marched on I would come to know this was one and the same as Fibromyalgia. I was sent to a Neurologist in my hometown in California who told me he thought that is what it was but wanted to send me to Scripps Institute in La Jolla to have the Neurologist there further examine my case. After a long and detailed appointment, the chief Neurologist agreed: Fibrositis (Fibromyalgia) with Chronic Fatigue Syndrome. Little did I know at that moment my life was going to change in the most drastic way possible. I had no idea the force that my body was dealing with and how unforgiving and downright harrowing an experience this journey would be.

For many years I did fairly well. I was a Mom to four young girls and my 1st husband worked out of town much of the time. I never missed a beat between school activities, soccer, music, etc. I would often over exert myself, but that was just par for the course. Back then sleeping was not an issue at all.  I would sleep all night and do it all again the next day. I was on a good medication cocktail and though I was in pain much of the time, my cocktail could handle what my stamina could not. I truly believe living in a very dry, warm climate was a huge asset as well. As sad as it is, I did have many people… family by extension mostly…. that would talk behind my back. I was being a ‘drama queen‘. I was an ‘attention seeker‘. I was ‘faking this thing with a pretend new and trendy illness‘. Trust me, I heard it all and then some. Sadly the trash talk would live on through the years. However Karma is lovely and I know people reap what they sow. I will let God handle that one. The truth of the matter is: I had no clue how bad this thing, this Fibrolmyalgia would get, and that eventually it would be one of the things that disabled me.

Fibroexitence1Moving from sunny, warm and dry Southern California to the damp Blue Ridge Mountains of Virginia was one of the biggest mistakes of my life. I regret it everyday for a multitude of reasons. One of those reasons is my Fibro precipitated into an ugly monster. I kept on my cocktail but it only worked for a short time here in Virginia. I was blessed to find a good Doctor straight away. He gave amazing trigger point injections. In fact Fibromyalgia was his ‘baby’ of sorts. Though he was a middle aged man, he actually had Fibromyalgia. To up the ante, he had a new patient from the San Joaquin Valley who could tell him all about Coccidioidomycosis better known as Valley Fever; something he knew of but had never met anyone who had first hand knowledge of. He also truly cared which is a great plus, actually scolding me (in a loving way) one time when I let a muscle spasm get out of hand. He said, “Don’t ever let a spasm get that bad again. You call in right away for an injection the next time your neck gets this bad.” We were both equally happy with our Doctor/ patient relationship.

With Dr. Alexander, I had a Doctor that was good, was passionate about Fibromyalgia and he had someone with first hand knowledge of Valley Fever. It was a win-win situation, as strange as that sounds. It worked!

With Dr. Alexander, I had a Doctor who was good, was passionate about Fibromyalgia and he had someone with first hand knowledge of Valley Fever, something he had always been interested in. It was a win-win situation, as strange as that sounds. It worked!


Sadly when I moved back to Virginia from a very brief move to South Carolina, Dr. Alexander had retired. I kissed many frogs but found only a few mediocre Doctors in the process. Fast forward and after a painful divorce, I finally got into pain management several years ago and as I wrote in a blog a few articles ago, I now have my medical dream team. This is a good thing considering my Fibro and spine issues have never been worse. I have a team that I respect and in turn they respect me. I finally won my disability case. All should be ‘right’ with the world. Except one thing: I am disabled in body, but inside I am alive. I  am the true blue free spirited girl. I am full of life and vigor. My body, however, has other things to say. Being able to do a few things here and there does not make up for all the things I have lost on a daily basis. What I really have is summed up as an existence. existence1aaaEvery day when I wake up, I put no expectation on how I will feel. I do not ‘set up’ the day for feeling bad. I want to send positive affirmations to the world that it will be a ‘good’ day. Sadly I get maybe 1-2 ‘goodish’ days a month. Let me explain a ‘goodish’ day. A ‘goodish’ day is not a good day. I do not remember good. Good is without pain. It means normal: no pain, everything is fine and everything is working like it should. I gave up on that concept a long time ago. It  is what it is. Now I put on a great mask for others (besides Paul). I try to keep that happy face on unless I really, truly am ‘in trouble’. I have worn masks more times than I can count. If you count up the ‘goodish’ days I have, I get the equivalent of about two days per month. Yes, that is less than 2 weeks per year. That means that for 11 1/2 months I am struggling with severe pain, insomnia, muscle spasms, migraines, crippling anxiety, brain fog, numbness, hands that do not work and drop 50% of everything I pick up every day, feet and legs giving out, Fibro flares, senses in overdrive, horrible and unforgiving IBS (noting after an IBS flare my stomach feels as if it has been sucker punched for a day or two), unforgiving fatigue, allergies that are off the chart and so much more I could keep listing issues. We all know the score. Also, note the approximately two weeks of ‘goodish’ days I have per year, I am not free of these woes, they are just lessened to a point that I don’t feel encompassed by them. Imagine for a moment if you do not have Fibro (or if it is not progressed to this point) having only two weeks total a year that you feel bigger than the malady that controls your life.  The worst part, however, is not the dismal issues I listed about. No, it is the judgement from those who are supposed to love me unconditionally. Some people in said group are unforgiving and nearly hateful. It is sad beyond words. My existence is hard enough without having this added stress and heartbreak. People question why Robin Williams took such extreme measures but when those who are supposed to love you most in the world turn their back on you, why should anyone even give a rip?

People wonder why such a big, well loved celebrity such as Robin Williams could feel so desperate to do something so extreme? When your own loved ones judge everything you do, call you unfounded names and listen to gossip of others, why should I care about the shell of an existence I have. I am holding on by my fingernails as it is.

People wonder why such a big, well loved celebrity such as Robin Williams could feel so desperate to do something so extreme? When your own loved ones judge everything you do, call you unfounded names and listen to gossip of others, people wonder how it can all go so wrong. Very easily.

This blog post is not meant to be a pity party. In fact it is anything but that. It is simply meant to be real and honest. Life for many with Fibromyalgia is not life but a mere existence. Do not get me wrong, nonetheless, I find joy in the little moments: that first taste of coffee in the morning, the changing leaves in Autumn, a sunny day, friends I have made all over the world and most of all my family that has stuck by me including my two perfect Grandchildren who give light to my world. They make my life worthwhile as does my amazing husband!

Life is hard under  the best of circumstances. For those of us battling chronic illness, who have decades of pain and stigma as well as loss of dreams to contend with, it is a struggle that words cannot describe. When your dreams are waylaid by such a cruel condition as Fibromyalgia, the collateral damage is mind boggling. It robs the Fibromite of more than anyone can begin to comprehend. It turns a life into an existence and can leave the person feeling hopeless and empty. Fibromyalgia is not just a word, it is a mighty force! Until next time, K.