Friendly Fire

friendlyf1When most of us think of friendly fire, we think of two soldiers on the battlefield both fighting for the same side and then in an instant one accidentally kills the other. This is a horrific event and certainly causes a tremendous amount of collateral damage not only to the mortally wounded and his or her family, but to the one who causes the fatal shot. However, what is friendly fire in chronic illness? I really do not even know if this term has ever been used or invented so I am branching out on uncharted territory here and branding it if it has not yet been used in this case. Friendly fire in the sense of the chronic illness world: those of us with Fibromyalgia, CFS/ME, M.S., Lupus, RSD, Lyme, Spinal injuries/damage and any other condition that can fit into the category is simply this: not respecting each other in the way we each choose to handle our illness. None of us present exactly the same symptoms and problems. None of us respond exactly the same to treatments…. whether it be medication, nutrition, exercise, physical therapy, counseling or the many other ways we chart our course to treat our conditions.

In the last month alone I have been attacked by a reader because I am able to go to the YMCA and participate in arthritis warm water classes. I am the youngest member of my class, at least by 20 years. This embarrassed me for a long time but then when all the lovely, funny, wonderful people in the class started to embrace and talk with me, I felt so at ease. I simply cannot afford physical therapy and it had been suggested to me by several of my health care providers that warm water therapy is excellent for Fibro. So I tried it. And guess what? It feels wonderful! It is not exerting at all, and as most Fibromites know, we can all attest how wonderful a warm shower or bath feels. This is basically the same only add a bit of movement and socialization. I make no apologies for this and it is quite hard to get out of the house at times, but it has helped some. Not a lot, but some. And I actually think just getting out of the house and socializing with these lovely people is 1/2 of the effect.

This same woman attacked me for being able to go to the store a couple times a week. What she does not know is when I go to the store, I only go to pick up a few light things. I am all but housebound. If I did not get out at some point during the week, I would lose my mind. I have no problem with someone questioning something I write if it is a true, intelligent question. But this person rambled in poor grammar to boot. To not embarrass her …. because trust me, it would… I did not approve her rambling attacks. Some bloggers would approve her attacks just to embarrass her. I did notice, however, on her Facebook page she has pictures of herself out at the lake, on the beach and at several social settings. She also noted she was staying in a hotel. Take it from me as someone who has, in the past, traveled a lot, checking into a hotel takes a lot of energy. So I find it hypocritical to attack me for doing my best when it is clear she is not as much of an invalid as she claims. As they say, a picture is worth 1,000 words.

I am trying to help people here. I realize not everyone is going to like and/or agree with what I say. Nonetheless, rather than issue a verbal assault, why not just move along in peace. I do not make any money from this blog. It is a labor of love to help others in this journey and to hopefully raise awareness to people who want to learn more about Fibromyalgia and Spine issues. We have got to stick together. I see so much squabbling and arguing amongst the chronic illness community, it saddens me.

When we in the chronic illness community fight and attack each other, we are really doing more harm than good. Even if we do not agree on each topic, treatment, method or protocol, it is imperative to respect each other and the personal choices we make. The one thing we do know about all these auto immune and like conditions is no two cases are exactly the same

When we in the chronic illness community fight and attack each other, we are really doing more harm than good. Even if we do not agree on each topic, treatment, method or protocol, it is imperative to respect each other and the personal choices we make. The one thing we do know about all these auto immune and like conditions is no two cases are exactly the same.

In the last few days I had posted a video from a “Doctor” in Las Vegas who makes big bucks on making fun of various illnesses. From Ebola to Influenza, if it kills, he parodies the disease and is getting quite rich and famous doing it! I am not quite sure what is funny about the suffering and death of hundreds and thousands of people, but I guess where there is a buck to be made…. no matter how unethical… people will cash in. I attempted to post this video to my page and simply put it as such: IF this video offends you, please speak up. I had three Facebook friends dislike the video for the same reasons. Two of my Facebook friends launched a campaign on the evils of drugs and how no one should use them for any reason. One stated even over the counter medications were evil. I quickly gave my side. Simply put, many of us cannot get by on air, nutrition and exercise alone. Many of us follow our pain contracts to the tee. Many of us work hard…. walking the tightrope of using as small a dose of meds we can to achieve a livable life vs. not being labeled an ‘addict’. Personally, I would rather see a Doctor with a syringe full of steroids than one who wants to offer me more medications. In fact if I were offered meds, I would decline them. I am not supposed to take NSAIDS. It is quite dangerous for me. I have started taking them again because of the issues I am having with migraines. Note NSAIDS instead of leaning on the prescription meds. I stated that I had said, “If you are offended, speak up, if not, that is fine, move on in peace.” I thought that would be the end, but it was not. friendlyf3The debate continued. Since it was stressing me out and it was my wall, I just deleted the whole conversation. One person messaged me and accused me of being in ‘defensive mode’. I wrote twice in my post and in the message that I felt the video was a double whammy: making fun of addiction (something as the daughter of an alcoholic, I do not find funny) and making it look like every single person in pain management is a pill popper (False!). Most people listen with the intent of talking. In other words they do not listen. The other ‘friend’? She blocks someone on a nearly daily basis. She complains every day about how bad her pain is, posting pictures of various selfies of ‘faces of pain’ yet refuses meds. I am not sure why she blocked me. I did not insult her and in fact I did not even respond directly to her, I simply pulled the post. If she thinks it ruined my day, it is the farthest thing from the truth.

Great words to live by! We have each got to respect that each of us respond to our illness in various and unique ways. My pain is not your pain. Who am I to tell you how to manage your illness? I would not dare!

Great words to live by! We have to respect each other and the fact that we each have a unique illness. The way I manage my pain is not going to work for everyone else. My pain is not your pain. Who am I to tell you how to manage your illness? I would not dare!

Each of us in this walk has a unique story to tell. This is not a rubber stamp illness and in fact I have layered issues… Fibromyalgia and a really messed up C-Spine (putting it rather mildly). My C-Spine needs at least one total reconstruction but thinking they can get it in one surgery is optimistic at best. There is only one Doctor in my city that has even agreed to take my surgery. I am also facing the likely event of another diagnosis of a 3rd autoimmune illness in the next few months and though we do not know yet, our bets are on MS. Stay tuned.

Rather than tell each other how to manage our illness, why not worry about our own illness and be supportive of our brothers and sisters and their walk. The DEA just cracked down yet again and the laws and restrictions are very tight. I am proud of myself and I know Paul is very proud of me. I am far worse today than I was five years ago, yet I am less medicated now because of the utilization of the wonderful epidurals and how wonderful they are in the management of my neck pain. Still, I do need some help from medications. But even my pain management Doctor notes that he is surprised, given the extent of my Fibro and neck damage that I can get relief from the low amount of meds I am on. My NP at my Internist office even noted on my last visit that my meds had lightened a good bit! It is a tightrope. And I am not ashamed. I have a lot of stuff going on. I am proud that I am know what to utilize and how to utilize it. I am able, if needed, to go to the ER in a pinch and get a Torodal shot (NSAID) which is non-narcotic. These are the things that will give us, the chronic pain patient, the reputation of not being a pill seeker. Now, if we can just get respect and support from our brothers and sisters in pain. That is the real test! Until next time, K.battle2

One Upmanship: The Competition Of Chronic Illness



Most of the people reading this have some sort of chronic illness. Those reading this that do not have chronic illness are likely trying to gain understanding. So either way those reading this should benefit from this blog post. I know we have all been a part of this dance; the dance of one upmanship. What do I mean by this? Let me explain. Most of us have a plethora of friends who share the same pain issues that we do. In most cases we have met these friends in a social networking scenario. Sadly in many situations instead of getting support, we end up hearing stories about fellow warriors’ woes at times when we are trying to vent and reach out. This leaves the person who shares and needs support feeling unheard. When we vent, we need to feel heard and validated. We do not need to feel like someone thinks our story is unimportant and feels their situation is more important than ours. They hijack our vent, so to speak. We are all fighting a battle. We must be kind and let each person who needs to vent have the floor, allowing them to feel heard.  oneup6I have worked hard on my listening skills over the past several years. Because we tend to be a society of talkers,  this is something I have made a deliberate decision to improve on. As the song says, “Everyone is talking and nobody is listening”. I do not want to be that kind of person. I want to be the kind of person who hears. I want to empathize. I want to help if I can. All I ask is if, occasionally, I need to vent, I am able to do so without it being a contest of platitudes or who has it worse off. There is always someone who has it worse off. If the truth be known, lately my vents only reveal a small portion of my frustrations. I often repeat I feel alone. Now let me explain something: I know there are many who care deeply for me and perhaps I should tweak this statement. On the flip side there are some who have said they love me only to leave me high and dry. That is not love. To say you love someone who is trying their hardest to be what you want them to be (basically jumping through the hoops set in front of them) only to have it never be good enough, high enough, long enough, _____ fill in blank enough, that is not love. It is sick manipulation. So what happens is this: when I have listened time and time and time again to friends only to have them one up me, I just retreat and hide. It does not mean I do not care about my friends, it means I just want to be able to have my turn once in a while to vent without being told that they have it  just as bad or worse. I spent hours listening to them and even helping them at times when in crisis. Yet when I need a shoulder, I cannot get one without one ups?

While oneuponship is human nature to a certain extent, it is imperative that we as fellow warriors become better listeners. We each vent and that is OK! However, when our friends vent, we need to be more sensitive to giving them the stage so to speak. This holds especially true if they have been there for you time and time again!

While one upmanship is human nature to a certain extent, it is imperative that we as fellow warriors become better listeners. We each vent and that is OK! However, when our friends vent, we need to be more sensitive to giving them the stage so to speak. This holds especially true if they have been there for you time and time again!

The dance of one upmanship usually goes like this: I will be in a horrible state and vent about my neck or Fibromyalgia. It has been especially bad lately and believe me, I do try not to do this often. I will then get a variety of replies. Most are kind, such as prayers for you or thinking of you. However, many are short essays telling me about said person’s journey with their lower lumbar or knee and how they need surgery too. They need to have L-5 fused to L-6 or a Cervical Spine Transplant or a double knee replacement while having a spine fusion while being suspended from the ceiling as a team of specialized surgeons film it for a super surgery docudrama. I know that my many friends in illness have extended issues. And when they vent I am the first one to offer a prayer, hug or any support I can give. However, the one thing I refrain from at all cost (unless they flat out ask questions about my experience) is T-boning another person’s vent with my issues. If a person is venting whether it is me or a friend, the last thing anyone should do is write a short story about their problems. It is inconsiderate and makes the person venting feel like they are unimportant and their problems are viewed as superficial. Instead of talking about our issues, why not try to really read or listen to our friends and tune into what they are saying. Are they frustrated? Are they scared? Do they just need a hug (even if it is a virtual hug)? Maybe they want prayers or good wishes. Perhaps they are crying out for help. Of course if they ask people to share their experiences with a surgery or illness then of course that is an open invite to jump in and share!

The best gift we can give each other is to be good friends and good listeners. We all have enough friends and belong to enough support groups that if we need our turn to vent we can. I am going to be honest, I am retreating into myself more and more because I feel less and less safe these days to vent. Each and every time I do I regret it. I feel like a chump much of the time because I have been front and center for so many people. Sadly, right now, I need friends more than ever. Yet lately I have been hibernating more and more. I hope as a society in general we can get better at listening. It is a great gift you can give someone and they will hopefully want to return it by listening when you need someone. Until next time. K. listen

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: