Guest Blogger: When A Caregiver Becomes The Patient

I am back! Thank you for being patient with me while I took a much needed break and while I had my neck surgery. Stay tuned! My first post is actually a part of what has happened during the time I was away from my blog. It is written by my husband Paul. Enjoy!


I’ve been Kelli’s full-time caregiver now for some considerable time. I knew it was going to be a part of our marriage and knew it might be hard sometimes. In practice, this means I find myself responsible for the major share of tasks around the home and sometimes have to help out with, or step in on, things that Kelli had planned to do herself.

So when, the day before Labor Day 2015, I took a bad fall and broke my collarbone…stuff got real, in a hurry.

For several days, I was functionally useless, alternating between immobile pain and opiate-induced sleep. Kelli’s caregiver, in the blink of an eye, became unable to render care of any sort. It was about all I could do to use the bathroom, eat, move…

And Kelli, bless her heart, was overwhelmed. She did an amazing job of looking after me, for which I am eternally grateful.

We did finally secure some outside help with meals thanks to my awesome employer. But my initial recovery put us through the wringer and left Kelli exhausted.

The thing I realized while injured: when you hurt, badly, you cannot do anything much. I got to walk, maybe not a mile, but a few dozen yards in her shoes. In doing so I gained a huge respect for what it is that chronic pain patients have to live through.

Eventually my pain subsided. My bone started to heal, the muscles regenerate and build back up. I regained most use of my injured shoulder and improve with every day that goes by.

But the chronic pain patient, the Fibro warrior, Lymie, or any other long-term condition sufferer, they don’t get that. They just keep on hurting, with no end in sight. It doesn’t get better.

For as overwhelmed as being a caregiver can be, it is orders of magnitude worse, all the time, for the one receiving the care. I found that out the hard way by becoming the patient, albeit briefly.

So if you’re a caregiver and you’re feeling like everything is so unfair, just stop. Think about it. Think from their perspective for a moment and how you might feel if you felt the way they do all the time! You still have the better end of the deal, trust me on that one.

peacetips_colourp215c271Until next time…… K.

I Will Be Back!

underconstructionThank you for bearing with me as I tend to some personal family issues, take a needed break and just take an all around breather. I will be back soon with an eclectic range of posts! Coming soon! Anticipated Date at this time: December 2015 after my ACDF surgery on November 13th. I have been very busy preparing for this surgery and hope  to start a VLOG on this. I have 3 herniated disc: C-4/5 5/6 6/7 (C-1/2 herniated a long time ago and they fused themselves), Severe foraminal stenosis, bone spurs, degenerative disc disease, osteo arthritis, a severe kyphosis. Basically the only I do not (I think anyway) is a fracture. One Dr agreed  in my city (that is the teaching hospital for Va Tech Medical students) to take my case. Wish me luck! And I will be back…. just the Terminator! 

Thank you one and all who have supported me by following this blog. This is my labor of love and I love all of those who share this journey with me. Take one day at a time and make the most of the ‘good’ days and rest, relax and just do your best on the bad ones. Life is but a breath. Take every moment and make it count. See you all soon. I have much to say!


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

Fibromyalgia: No Two Cases Are Alike

Fibro_notwocases1I have several friends with Fibromyalgia and have talked to countless people who struggle with this monster. While women are most affected, men and children are not immune to Fibromyalgia. I myself suffered what I think was my trigger event in my 20’s and was officially diagnosed at age 32. I even wonder, at times, if I had events beforehand that were foreshadowing my fate. I may never know. However, the one thing I do know between the many friends I have personally and the countless people online as well as in public, such as in the line at the store, each and every case is unique. No two cases of Fibro are ever the same. Ever.

Fibromyalgia can run the gamut from unnoticeable to bedridden and most of the time somewhere in between. One of the warm water/arthritis pool teachers at the YMCA has Fibro. If I had not talked to this lady myself, she would be the last person I would have guessed as having even a hang nail. She had endless energy, is bouncy, never seems to be in pain and is a great motivator. I do agree that we must move through our Fibro. Being stationary only brings more pain. I have tested this theory and moving (in the end) always helps lower my pain levels. Of course Fibro is not just about one treatment, but that is an entire other subject. She is a dynamo and the last person one would think as having Fibro.

I live in a fairly small community by some standards and know most of the clerks at the stores I frequent. I know of two clerks in separate stores that stand all day. They too have Fibro. Both ladies are around my age. Both do their jobs very well and both hurt tremendously at times. I do not know this because they tell me but because I can see the pain in their face. I generally inquire and tell them to be straight with me. I will then get the truth. They are concerned and care about me and were pulling for me during my disability ordeal as well as my impending neck surgery. I too wear the ‘mask of happiness’ when I am hurting badly or in a flare. I think we all have.  I know that mask and know how to see through it.


Then there are those completely bed ridden and I fear I will be there someday. I will go down fighting, trust me I will! But I get it. I see it getting closer everyday. In the last week alone, I have spent three full days laying on my couch all day. It is utterly soul crushing! Paul and I already talk about having to rent a wheelchair if we want to ever go back to an amusement park. I have to sit every few minutes when I go shopping. There is no way I can stand all day. To sit every 15-30 minutes at a park would mean getting nothing done. I balk at it. I detest it. I pray for me it never comes. Nonetheless, I so understand where it could get to this.

Fibronotwothesame2I feel that Fibromyalgia/Chronic Fatigue Syndrome is one of the most wide ranged illnesses that exist. My first symptom was numb hips. Yes, numb hips and from there it turned into a cruel monster. And in the prime of my life I was struck down.

My best friend got to come up and visit me for 8 days for Thanksgiving. I met her through social networking and she too suffers from chronic illness. She stated I have the worst case of Fibro she has ever seen. And I was having a good week! All the same, this is not a contest. In my last blog I made that very clear. We are all sick, we all hurt and we all have numerous other issues related to our Fibro and in some cases other chronic illnesses or spinal degeneration, etc.

My hope and wish in this post is for us to all care about our fellow warriors. My (arthritis) pool class teacher could be hiding pain. Behind her bubbly personality could be sleepless nights, lots of pacing the floor and a fight she does not show the world. As stated, I hide things all the time…. we all do. We all hurt, we all feel like crap and we have all had a huge part of our lives ripped from us. This is not a one size fits all but we have the common denominator: pain as well as all the collateral damage Fibromyalgia throws at us. My Fibro is not the same as yours or his or hers. So let’s just support each other. As the quote says,

“Be kind, for everyone you meet is fighting a hard battle” ~ Plato

Until next time, K.


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:

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.


My Long And Arduous Fight For Disability: Part 2, Fully Favorable!

Disablity2_1It has been 3 1/2 years since I left Liberty Medical and my Doctor disabled me out of work. Little did I know that this process would turn into a 3 1/2 year fight which included my husband taking multiple jobs, numerous health issue setbacks, more paperwork than I ever thought possible, financial issues of devastating proportions and so much more if I were to undertake writing in full, it would be a book and not a blog post. Since I filed the first papers my health has declined so rapidly it is scary, I have changed my entire medical team and now have what I have dubbed my ‘medical dream team’ and I feel I know a whole lot about this long, grueling process called “The Social Security Disability Process”. My appeals decision, Fully Favorable.

Not only did I get a Fully Favorable decision, I imagined it be this great climactic moment with the background music swelling and slow motion up to the moment of revaluation. It was completely opposite. In fact I said two things: My name and “Yes” upon being sworn in. After talking to my attorney nearly an hour two days prior to the hearing and going over the ability for me to shut my trap… “Less is more, less is more” became my mantra for two days ….. it seems ‘intelligence’ is a detriment and not an asset in this case. In fact my attorney laughed and said, “If your were not so obviously disabled, I would love to hire you!”.  In this case it was simple: I am one sad, sick lady. Justice was served. There was no other way to go in this labyrinth if we were to find our way out. There was one and only one direction. I will also add there is nothing more sobering than to see your medical records… all 2,000 pages …. and knowing that 1,000 pages were during the last year alone.

Sobering! Four Reams of copy paper equals 2,000 pages. That is the amount which equals my medical records in the last 3 years. Of those pages, 1,000 of them were in the last year alone.

Sobering! Four Reams of copy paper equals 2,000 pages. That is the amount which equals my medical records in the last 3 years. Of those pages, 1,000 of them were in the last year alone.

The night before the hearing, my next door neighbor and bestie Eva brought over hugs, prayers, good wishes and something else. She handed me a small, see through package. In it contained a small, pewter Angel. She said this angel was a ‘traveling’ Angel and it had been all over the world. It was to stay with me until someone close  to me needs it for a similar reason. The minute she handed me this little Angel, I felt a great sense of peace. I knew everything was going to be alright. I had been searching for a sign from God, and this was it. In fact while I was a bit nervous going in, I was not near as nervous as I ‘should’ have been given what was at stake. I was not smug, I just was not anxiety stricken Kelli……. the girl sitting in the seat about ten feet away and three feet lower than the judge.   God had my back and my traveling Angel was firmly at my side. It also helped that I had the truth. I am so utterly broken, there is no possible way I can hold down any job.

Paul had settled down into his seat after using the facilities. He was starting to thwack himself for not bringing reading material when the door to our hearing room opened and out we walked. I knew it was not long, but I would later find out we had been in there about fifteen minutes. The minute he saw us coming out he knew it was either very good… or, very bad. The moment he saw my face he knew, all was well.


Time is odd. It can stop when we are waiting for something good or go so fast you blink. A child that you once held on your lap is now  graduating High School and you wonder where the time went. My Granddaughter was an infant when I first filed for disability. She is now a year from starting Kindergarten and as smart as a whip. She can use her Daido’s I-Pad like a pro, knows her numbers and letters, can swim, build play-doh creatures and had an infinite imagination. She was not even crawling when I filed my first papers. So it would stand to reason that this ending….. a bittersweet victory to my existence such as it is….. would swell with climatic music and moments of intense drama. It did not. It was short and sweet and I was more a ‘fly on the wall’ than the subject of the hearing.Disability2_2aa

Happy is not the correct word, relieved is a better word. I had dreams and great ambitions for this point in my life. I have slight ADD which means the brain cannot stop even when the body does. I am not one just to ‘sit’ and watch TV. In fact my TV only goes on one hour each day as is (40 mins if I use the DVR). No, happy is not a good word. You cannot be me, living in this pain and be ‘happy’. It is the true definition of oxymoron. However, I am relieved to finally get some of the pressure off of my amazing husband…. a man who does so much and complains so little. He still does have a life and I would like to give some of his life back to him.

I see God’s plan in all of this. And it takes me to back to that word, time.

Jeremiah 29:11:

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

I realize this timing was God’s plan and it takes me back to that January day in 2011 when I initially filed the first time. I remember the nice man at Social Security saying, “If you get denied the first or even 2nd time, don’t give up hope. What happens with people that are disabled is they tend to get sicker and sicker and eventually get approved.” It was a spot on call. I feel It was meant to be this way for a reason. God’s timing; His perfect timing.  Nonetheless, the truth has been there and always was there. I will add one small victory, as I see it. When completing the endless paperwork, Paul and I did not list Fibromyalgia as my number one of approximately twelve issues that disable me. Honestly, my neck, Fibro, migraines and IBS, it is a draw, really, as to which to list as the number one of about a dozen issues. If you add in the latest findings from the hospital (which I am keeping private for now), the potential for these latest findings opens up an entire new list of possibilities…..and I do not mean good ones.  However, on the list in the ruling, Fibromyalgia was listed as the first item. I see this as a very huge victory for Fibromites! This shows that the judge recognizes that Fibro is real, evil and life robbing. Sadly, the list is long and most issues beyond repair at this point. The truth was presented and justice was served. I thank all who prayed and sent positive energy. Most of all, I give all the Glory to God. Until next time, K.

Cast me gently
Into morning,
For the night has been unkind

“Answer” ~ Sarah McLachlan

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.