Off The Wall: Goodbye, For Now, Robin Williams. Thank You For Everything!

RobinWilliams_1For this post I am going off the wall. How can I not? I am saddened beyond words at the passing of the awesome and wonderful Robin Williams. I have not been this affected by a celebrity’s death since Princess Diana died in 1997. Robin was not just an actor and comedian, he was like family. No matter how down in the dumps, anxious or otherwise off kilter I feel, I could see any movie he was in or any of his stand up acts or even an appearance on a talk show and my stomach would hurt with laughter. He truly was in a class all his own. He was perhaps the funniest man in history but more than that, he could turn on a dime and steal the show in a drama. There is no doubt about it, Robin was born to perform. I keep going over and over in my head what exactly lead up to the events that tortured him to the point that he felt the only way out was to exit this world. So perhaps I am really not venturing that far off the wall because many comparisons I make could be said for those of us living with Fibromyalgia.  As one who lives in physical pain each and every waking minute of the day, battles depression and anxiety myself as well as some complicated ‘family situations’,  I would be truly lying if I said the thought has not crossed my mind on more than one occasion.

The first time I saw Robin Williams I was a young girl and he played Mork on "Mork & Mindy". He has been making me laugh since then

The first time I saw Robin Williams I was a young girl and he played Mork on “Mork & Mindy”. He has been making me laugh since then

So what will I miss most about Robin Williams besides everything?

  • Humor   I think it is safe to say, Robin was the funniest man on earth. Some people compared his humor to others, however I would say Robin was in a league all his own. Between his ability to ad-lib and his manic, free-fall with sheer genius timing, no one did comedy like he did. He truly invented manic comedy and I dare say it would take someone extraordinary to even come close to him. No one in our lifetime will ever fill his shoes.
  • Drama   On a turn of the dime he was just as amazing in dramatic parts. Gentle, caring, insightful: he created his dramatic persona on the other end of the spectrum from his comic personality. Some might say it was because he was bi-polar. I choose to think it is because the man was simply talented beyond what words can even describe. Either way, Robin was just as good in dramatic rolls as he was in comedy.


One of my favorite rolls from "Good Morning Vietnam" which was true, blue Robin manic humor. Oh how I will miss this!

One of my favorite roles from “Good Morning Vietnam” which was true, blue Robin manic humor. Oh how I will miss this!

  • EGO: OR LACK THEREOF    So many of Hollywood’s biggest and finest grow an ego. It is easy enough. Fame, fortune and people throwing themselves at them makes it awfully hard to maintain rational focus. However, Robin did and he did it well. Not only did he maintain, but he carried demons that would take his very life; forces he could not reckon with that even those closest to him did not see until it was too late. Nothing turns me off faster than an ego. I would go as far to say that Robin was about as far removed from an ego as one could be.
  •  HE WAS HUMAN: FAULTS AND ALL     Other than internet trolls…which I consider to be  bottom feeding maggot pond scums…I have not seen one bad thing about Robin that anyone (ex wives included) has had to say about him. He was an amazing actor, comedian, spouse, father, friend, humanitarian and loved by all who knew and appreciated him. But beyond that, he was not without fault. He openly had an affair which ended his first marriage. The nanny of his first son was his 2nd wife and pregnant with his 2nd child when they married. He battled addiction with numerous set backs along the way. He battled bipolar disorder….. especially depression. In other words, he was human like the rest of us. These things did not make him weak, they made him like us! Real, tangible. And he didn’t hide it like some trumped up, egotistical, overbearing Hollywood star. He handled it with dignity, pride and even humility. In fact in the end, it was the very thing that cut him off from those he could reach out to and made him feel there was no other way out than to end his life.
Oh Robin! If we had only known! You were so loved! You would have been held up in a sea of love so big, you would still be with us.

Oh Robin! If we had only known! You were so loved! You would have been held up in a sea of love so big, you would still be with us.

What do you say to a man that could make you laugh when nothing else could? What do you say to a man who did so much for others including chartering his own jet to fly across country to be with a dying little girl… no press, no reporters… in fact no one knew until after his own death. He brought that little girl happiness in her last few weeks and even planted a tree in her name after her death. What do you say about a man that everyone in San Francisco said was kind, down to earth and never stuck up or unreachable? What do you say about a man that gave oh, so much but failed to reserve enough for himself?

If anything we must raise the awareness higher than ever that there is no shame in having any kind of mental issue. Whether it is depression, anxiety, bipolar, etc. Whatever it is, there is nothing to be shamed about. I have both General Anxiety Disorder…. crippling and have wrestled with depression for 21+ years. I was misdiagnosed as having another mental issue by a biased and I would find out later, very unethical ‘psychologist’. Four mental health care professionals; two Psychiatrists and two counselors; one with a PHD and one with a Masters refuted his diagnosis and all concur; GAD and Depression (well maintained most of the time). I am not ashamed saying this. It is part of my disability and it is also physiological in nature. The serotonin and  other chemicals in my brain need help. It is no different than my thyroid needing help for my Hashimoto’s hypothyroidism. Calling people mentally ill like it is a plague is very counter productive and will only serve to increase the suicide rate, not lower it. 

Many, if not most, people with Fibromyalgia suffer with Anxiety and/or Depression. So please, if either of these issues is not being well cared for, get the help that is needed. Do not make someone ask, “Why?” We have lost a beloved ‘friend’. We can’t have this keep happening.  If you need help and are thinking about suicide, please call (U.S.) 1-800-273-8255. Suicide is the one mistake you will not live to regret.

Here is the link to the video I made some  time ago on Fibro and suicide:

Thank you Robin. Thank you for the laughs, the movies, the life lessons. Thank you for the humanity. I look forward to partying in Heaven someday. Godspeed my friend. The Genie is free. Until next time, K. Robin_genie

When Those We Love Turn Their Backs


First of all I want to apologize for the length of time in between blog postings.
 I had to prepare for my SSD Appeals hearing and was blown away by the amount of last minute paperwork involved.
 To add to the mix, I have new evidence from my hospitalization over 4th of July weekend 
that was pretty heavy duty and needed to be submitted.
 Paul and I worked together over the course of several days including four days that
we had to turn off the phones and internet shut the world out. Our living room looked like a paper factory
had exploded in it.  Stay tuned. I will post part two once I get the official decision in writing.


Most of us with Fibromyalgia know the nettle’s sting of having family and/or friends reject us in one form or another. Why? Because we have a chronic illness that cannot be proved by blood tests, scans, etc. Therefore, we are just ‘whiny, attention seeking drama queens/kings’. I will admit there are people who do nothing but talk about how much pain they are in constantly. This is tiring. As a Fibromite, even I can only take so much of this. And when I do need to vent, I usually get the old, “Oh! I know what I mean, I have that too and this and this and that too!” aka, the ‘one up syndrome’. So I choose when, where and to whom I vent wisely.  However, how beneficial is it, really, to put on that game face and hide everything? I have never done the martyr thing well and have a great distaste for people that partake in it. We have all know them. Add in passive aggressive and we have super martyr.

What has prompted this post is two things. First, the fact that someone close to me has called me a slew of horrible names and still does not know what (somewhat frightening things) were found during my recent hospitalization. I am not disclosing this openly, however, while we do not think it is life threatening it is “abnormal’ and is warranting more tests as soon as I have insurance this Autumn. Frankly,  I am frightened. You try getting an abnormal brain scan and see if you would not be frightened. And then to have someone you have loved, cared for, gone to the mats for, taken crap from, jumped backwards through flaming hoops while farting rainbows and they suddenly turn their back; it is as cruel as it gets.

Second, the many posts I have read from Fibromites as well as our sister illnesses: MS, Lupus, RA and many other illnesses that they too have been kicked to the curb by family and friends. It is shameful! I would ask someone who would do this how they would feel if they had an illness which affected their life 24 hours a day, 7 days a week; How would you feel if you were gossiped about, called names and dumped to the curb by someone who is supposed to ‘love‘ you? I don’t know about anyone else, but from where I stand, that is NOT love.


Fibromyalgia is not a terminal illness unless you count the many people who take their own life. As I have stated many times before, the suicide rate for Fibromyalgia Patients is 8-10 times higher than the general population. If you are reading this and have Fibromyalgia, you do not need an explanation. However, if you are lucky enough to be Fibro free let me give you a little tiny view into our world. This is not a ‘pity party’, nor is it a plea to feel sorry for us. It is simply, our reality.

Imagine a time when you had the flu. You ached from head to toe. You were exhausted. You could barely get out of bed to use the bathroom. Every move… every step took effort. You had a throbbing headache. You were dizzy. Maybe your heart raced. The glands in your neck were sore. The light hurt your eyes. Every sense was overwhelming…. sight, sound, smell, etc. Every move took great effort. In fact just the mere act of getting up, off the couch, took effort beyond what you could extend. Your head is so full of fog, you cannot think straight to save your life. AND NO! It is not from ‘the drugs you take’. Nothing can get me from calm to totally upset than someone blaming it on the meds. For the record: I am hurting WORSE than ever (remember, my neck is completely wrecked; every inch of it has an issue and this is separate from the Fibro), yet I am LESS medicated than I have ever been. I told the PA at my pain management office just the other day that this cocktail is perfect. Do not get me wrong, I still have bad days. However, this cocktail gives me as much relief as anything can while maintaining clarity. Even my Doctor has said he is surprised, given my neck, how well I am responding on this ‘low’ dose of medications I am on.

I just described the bad end of the spectrum. The ‘good end’ is like you are coming out of that flu. You are ‘rummy’. You have malaise but can do some things. Not much. Some. You still ache but instead of feeling like you got hit by a bus, you have been hit by a car. If you get a few things done during the day….. fold a couple loads of clothing, cook a simple meal and maybe run to the store for a few items, that is a ‘good’ day. The headache is there, just dull instead if throbbing. The muscles hurt, but instead of feeling like the balls attached to you are 100 lbs, they are 50 lbs. The brain fog is there but instead of losing everything, you only manage to lose 1/2 of the things you need. You are either tied to the bathroom or feel as bloated as Jabba The Hutt because you have consumed an entire bottle of Immodium the previous 3 days. Add a cervical spine that is compressed like Scarlett O’Hara in her corset and you are stumbling, tripping…. possibly falling….. and dropping up to 1/2 of everything you pick up each and every day. Imagine for a moment that every time you pick your keys up, your brush,  a spoon to stir the spaghetti sauce or even a stack of important papers you drop them. Many people know about me dropping my cell phone days after getting it and the repair for the cracked front was $140.00. Many of us…. myself included… do not really have a life, we have an existence. My Grandchildren are my joy and of course my oldest daughter who has been my saving grace. I don’t think she knows the joy they all bring to my life.

Those of us with this unforgiving force do not need to be shunned. We need love, understanding and caring more than ever. Fibromyalgia IS REAL. People can stick their heads in the sand, but it is not going away. And until people quit treating us like modern day lepers, the suicide rate will continue to climb, the stigma will stay and the depression rate will soar. I recently received a comment from a two time cancer survivor who said she would rather battle cancer than Fibromyalgia. There are no words I have for that statement as it is one of the most powerful testimonies to how horrific this condition is that I have ever heard. I have to wonder how loved one would treat us if we had cancer or another like illness. Would they call us drug addicts?  Would they call us malingerers? Would they call us lazy fakers? No. Never. Fibro_Uncaring2This leads me to a recent event. I walk on a virtual land mine to be the person those I love want me to be. “To thine own self be true”? Never. I am too busy being what I think people want me to be. It is all for naught. Sleeping 2-3 hours a night with papers strewn all over my living room, I was tired and nervous in the days leading to my disability appeals hearing. I did overreact to something regarding a loved one. I apologized. On top of all this, I was learning how to use the voice recognition on my new phone. It sends a lot of texts, rather than one long one. This was a learning experience for me and bear in mind, we all have learning experiences…. it is a part of life.The texts sent back to Paul were vile and hate filled. I was called a “Mentally ill drug addict”. I am neither, but why try defending myself? It is a stigma many of us with invisible chronic illness face. And they wonder why so many commit suicide. Recently the great Robin Williams took his own life. I am heart sick. He did have bi-polar so it could be said he was ‘mentally ill’. However, it did not take away from his talent and how many laughs he gave us over the year. He added so much to so many lives. God rest his soul. Oh how I wish he had reached out to someone….. anyone. Now he is gone and the world is a little darker for it.

As for ‘drugs’; I have never used illegal drugs, including pot and my Rx meds are all on the low end of what I can take to help: in other words I do not over medicate. I do not agree with the school of thought that ‘one should just tough it out’. Why should I or anyone? My meds help me …. they are imperative and are the difference for me getting through my day with some degree of function vs being laid up day in and day out. I am not doped up, but the meds I do take allow me to control my pain enough to have *some* quality of existence…. not life…. existence. I do other things too such as eat healthy, meditate and low impact exercise. Nonetheless, I owe no explanation. The person the made this horrible, hateful accusation did so for no other reason than to hurt me. The saddest part, my life is hard and dismal enough. How can someone that proclaims to love you say such a horrible thing? Especially when your life is hard enough as it is.Fibro_uncaring

So we, those of us with chronic, painful conditions have a ‘group’ of sorts. In my own case, about 80% to 90% of my friends on Facebook have either Fibromyalgia, Lupus, MS, RA, CFS/ME, etc. I also have many friends who do not have these issues but suffer from anxiety or spinal stenosis. The one common thread? We all have a chronic illness and we have all been on the receiving end of platitudes, ‘advice’, disbelief and good ole’ gossip. So many of us rely on each other whether talking to each other or in groups. We have each other to vent to. While I do not like the ‘one upping’ that can sometimes transpire, I will say that I have made some wonderful friends all over the world. I have these people I can talk to anytime…. day or night…. any time I want. Nonetheless, sometimes there are things my loved ones need to hear that may not pertain to my Fibro or my neck. Our loved ones need to listen when we tell them, this is serious, you need to listen!!!! I have a loved one that still does not know about an abnormal finding on my brain scan. I must deduce this person does not care. Also, having a good, supportive partner is essential. Paul is my Northern Star but he is not a ‘yes man’. If I am being unreasonable, he will call me on it. He sees my personal hell on a daily basis. The morning of my SSD with poetic justice I dropped my cup of coffee all over myself and my kitchen. I laughed. I cried. It was so sad, but so funny. How apros pos.

What needs to happen is simple. Those that think we are ‘faking drug addicts’ who just want to get out of working: this mindset must change! THIS is NOT how I envisioned my life. I am still young. I had hopes and dreams. Crushed. No, I am not having a pity party, I am being realistic. Anyone who thinks we want this mess: they are the ones who need their head examined. I am going back to the cancer example. Maybe it is easier because cancer has one of two outcomes; remission/cure or sadly, death. Maybe it is easier because there is a definitive ‘end’ at some point. Maybe with ‘us’, because in most cases we are not terminally ill, but chronic and for life it means we are going to be this way for the rest of our lives. Well I have a secret, if it makes you uncomfortable, how do you think that makes US feel? I know that (unless a cure is found), I will hurt, each and everyday, for the rest of my life. And not just hurt, I mean HURT. Nonetheless, I put on my ‘happy’ mask and rarely talk about it.


bekindMy message to fellow warriors: To thine own self be true. All we can do is the best we can do with what we have. Most of my fellow warriors rarely, if ever, talk about their illness to others (people lucky enough to not have to endure our hell). However, when something serious comes along we do need to let our loved ones know. If they refuse the information, ask yourself: “Does this person really love me?”. Is it worth  getting upset or worse, feeling guilty about an illness you have no control over? Of course not! You did not plan, anticipate or ‘sign up’ for this horrible lot in life. So we just do the best we can each day. I suggest we don’t make every conversation about it and in fact rely on your fellow warriors more than those who will never get it unless they get sick someday. Even with that, try not to think about it all the time. I try to keep my mind occupied all the time. It is hard when getting through the day means dropping things constantly, 50 shades of hurting, muscle spasms and a lot of tears. But try. Try and focus on other things.

My message to Loved Ones: Try. Try to understand what our life is like. From the moment my eyes open in the morning, that familiar throb throughout our body reminding us this force called Fibromyalgia is calling the shots. If it is raining, we know without even looking outside. For me: 10-15 headaches a month and the rest of the month I have some sort of headache. This means I have a headache nearly if not each and every day. Some days I am so fatigued, it is all I can do to shower and just collapse on the couch. My time management sucks because my gut runs my clock. At least five nights out of any given week you can find me pacing the floor at 3 AM in so much pain that I am in tears. I must leave Paul to sleep so he can get up for work. Night…. it is the worst and loneliest time. All the same, I try. Not only do I try, I feel like a puppet on a string trying to obey my puppeteer’s commands. Most of the time I get it right but when I don’t, I am thrown in my box, lid is shut, latch is locked. Wait! I am not a puppet! I am not a machine! I am human. I am just like every one else: subject to imperfection. Remember that. Remember, it is hard  to live our lives. Our existence.

As stated earlier, I was so saddened by the death of Robin Williams. However, when I found out his suicide was brought on by a bout of depression, I was not ‘surprised’. By surprised, I mean I ‘get it’. Oh how  I wish he would have reached out. But in the bitterness of his exit from this earth, maybe we can begin to break the wall down and get people to quit judging those of us with invisible/taboo illnesses and just start loving. Until next time, K.