In January of 2011 when I was called in by my supervisor and HR supervisor of “Liberty Medical” to be told I had exhausted every last second of my FMLA time and my job was terminated, I was almost relieved. I knew I was on borrowed time for quite a good while. The rumors had been flying throughout my team about me already. I was late nearly, if not every day. I was given special breaks to walk off sitting for too long. However, I could not walk too long either. I had numerous bouts of IBS sometimes taking me off the phones up to ten times an hour for three hours straight. Once the twenty or so Imodium I swallowed kicked in (only to be followed by horrific constipation a few days later), it sometimes slowed it down….. with 1/2 the day being interrupted by bathroom breaks. To make it worse, I was having frequent asthma attacks and having to be pulled off the phone at a moments notice. Both my main supervisor and co-leader knew the sound of my bellowing cough that meant one thing: I could not breathe. 911 was almost called more times than I can count and honestly likely would have been if I had not been so stubborn…. and embarrassed.  There were also a lot of people that got upset…. thinking I got preferred treatment. What they did not know was each and every time I signed off my phone I was OFF the clock. Was it a horrific arrangement for the person doing payroll? Yes. However, for them to keep one of the top cross sellers and ‘most compliments received’ team members… which include a hand written letter by the wife of a Congressman, it was unconventional, but worked. Until I ran out of time.  When my Doctor filled out the form for unemployment, after my termination: “Cannot Work”, my quest for my SSD (Disability Benefits) began. In fact it was more than that, she deemed me as “Disabled”. Thus began my journey in what I have known to be the most unfair, ridiculous and frustrating experience of my life: Our Social Security Disability and how it ‘deems’ one disabled is broken, and that is an understatement. Little did I know that 3 1/2 years later and 100 times sicker than I ever was then, I would still be fighting and have pulled both my Congressman and the President of the United States into my battle to get what I have payed into all these years; disability benefits, should I be unable to work.

I am not a freeloader, malingerer or looking for an ‘easy way out’. I simply, cannot work. I wish I could. I loved working. But the simple fact is, I can barely get myself through the day let alone show up for a job each day. I am rarely to never on time for anything. It is the nature of my many beasts also known as Fibromyalgia and my other medical issues.  It took typing out my list of “Medical Conditions” to wake me up to how sick I really am. It is 4 pages long; 12 point font typing. No matter how you slice it, I am: DISABLED.

I don’t think people who judge my situation realize, when this is all said and done, I will only be receiving a bit over $600 a month…. along with Medicare. However, that is enough to get us from ‘struggling’ to ‘barely making it’. I do not feel it is ‘owed to me’…. such as a lazy way of not working. I did pay into this system like all people do, however, and it is ‘insurance’ should you become unable to work. I cannot hold any job. I do not see there being any chance of a job opening with my skill sets: ‘some college’ and who will be calling in at least 5-7 days per month, late nearly (if not every) day, need 10 bathroom breaks a day at least 3 hours a day at least two days of the work week, need two 10 minute breaks an hour because I cannot sit too long. Of course I cannot stand for long either (meaning a standing job is out). If someone with a foggy brain who drops 1/2 of everything they pick up with all other of these issues is OK, well bring it on. However, we all know there is nothing out there for someone like me. Nor should there be. No employer should pay someone to be sick on their clock.. Any judge that cannot see I am 100% disabled is not fit to wear the robe he or she has worked to obtain. The first judge that ruled against my case said I could do one job: assemble things. Really? On what planet? I cannot even put a necklace on (Paul has to fasten it), put silverware up without dropping 1/2 of it or go through the day without dropping 50% of everything I pick up. Recently I dropped my new smart phone (free for re-contracting). It shattered and it cost $140.00 to repair.

I drop at least 50% of everything I pick up each and everyday. Recently I dropped my new cell phone and it was $140.00 to repair. We got a good cover for it and it has been dropped several times sinse. My hands ‘go out’ with no notice and when my legs do, I fall. SHAME ON THIS JUDGE! On what planet am I capable of assembling anything…. provided I would get to work on time, everyday and not have to take two-three breaks an hour and go on 30 bathroom breaks in a 3 hour period at least 2 mornings a week. Unempathetic, clueless and having a problem with me does not even begin to describe it. There is NO doubt in my mind if I were to get him again, he would not be fair or impartial.

As most people know my first hearing was denied. Even though I had the backing of ALL my Doctors (gee, you would think they know a thing or two, right?), and an MRI showing my neck is a trainwreck, he said I could assemble. WHAT? Ok, that is like saying a person without arms can cross stitch. I was clumsy before my neck started compressing my spine. Clumsy is not even a word that touches what I am now. I have ruined more eggs (dropping them), had heads of lettuce go rolling across a parking lot and many other like stories. When I say my hands and legs give out, I mean they just give out and I am down on the ground or whatever I  am holding is dropped. It is like a hose with a kink and the water pressure stopping or getting cut to nothing.

Because of this mean, horrible man, I am now entering 3 1/2 years of fighting for my disability. Would I rather be working? Hell yeah, I would!!!!! But when I say there is not one single job I can do, I mean that with all I am. Today alone I have had an IBS flare. I feel like I have been sucker punched in the gut. I have ‘gone’ at least 15 times and have taken 20 Imodium. It is miserable and it is my life. When I say my health dictates my life, I am not exaggerating. I am a prisoner to my body. If I am lucky, I get 2-3 hours sleep a night and then crash for about 14 hours from sheer exhaustion. Suicide? I would be lying if I say I have not entertained the notion. However my husband and my Grandbabies keep me going. So the good news is I get my case re heard. The absolutely devastating news…. it is the same judge. No! How can this be? Is this some sick, cruel joke? I am doing everything I can do to make sure a different judge hears this or even asking for a change of venue….. I have NO faith in this man. None. I was totally disabled when he ruled unfavorable. I am in hopeless and so much worse shape now. But he has an ‘issue’ with me and I will NOT be in the 36% again or Paul will collapse from having to work so many jobs to keep us afloat. Roanoke Disability Court, you will make this right and I will fight with all I have to make sure it is set right. I have no faith in you as it is. If I get this guy, you might as well sign unfavorable right then and there as I don’t know what his problem is with me, but it is quite evident.

Almost four years…… I am livid! This is beyond a miscarriage of justice and I am doing my best NOT to handle this in self destructive way. I have some ideas but my gut is in such bad shape, my Blood Pressure was up at the Dr appointment I had this morning and I am a mess. My long and arduous fight for what is right…. my disability…. will not be blown sky high by an unfair judge. They will make this right, after all, I have rights too. So here I go…. lets see if my rights are respected. I will post every few days and post smaller blogs in the days leading up to this. We shall see if I completely lose faith in our legal system or if it is restored. I will know in a few weeks. Until next time, K.

Remember this guy?  While this situation happened several years ago, the thoughts of this narrow minded, hateful man are sadly, shared by many. Fibromyalgia is the last medical disorder I know of in which the patient spends time and energy ‘proving’ he or she is sick. It is cruel and it is wrong. We have enough crap to deal with, without people labeling us as fakers or worse, as having a condition that does not even exist! We are modern day lepers.

As many know, I love to make videos. I make them about Fibro and other things as well. I made a video I am very proud of for Fibromyalgia Awareness Day 2014. I was greeted by one of ‘these people’ in the form of a comment. See below:

First, it is sad that pond scum like this even exists. Fibromyalgia is a medical condition and every Doctor out there has it in their medical book. Every Doctor now knows it is very real. Every medical school is teaching about it. There are even those scientist who are passionate about it and wanting to ‘take it on’ and figure this mysterious ailment out. Is it ‘invisible’? Sure! Unless you spend any amount of time with the Fibromite. You will learn quickly the winces that the chronic pain brings and the puffy eyes that only insomnia marked by chronic fatigue can give. So lets look at another invisible condition that many have had more experience with: Migraine headaches. You cannot see a migraine headache. You cannot do a blood test or run a scan for it. However anyone that has had even one migraine can attest, it is the most brutal of all experiences. I have never seen anyone question the existence of a migraine. As a sufferer myself, I can attest, there is nothing worse. Yet no one has ever has said I am faking, attention seeking or worse, my migraine is not real. Why should Fibro be any different? It should not… not back then, not now and certainly not in the future! And to answer this abusive troll on who I would be ‘without my fibro’? : I would be a nurse, taking care of people and still trying to write and get published, I would be going a million miles an hour doing it! Now I am lucky if I get two or three things done a day.

We Fibromites have the people like good ole “VeniceStu”. They want to label us as fakers. Of course “Venicestu” has a fake name and a cute ‘baby in a bath’ for his avatar thinking it will hide what he really is: an abusive troll. On top of that I have fought another smaller battle to stand my Fibro ground: everyone insisting by God, I must have Lyme Disease. Ding, Ding!!!!!! Again, “Fibro cannot be real, it must be masking something else”.  I have a lot of friends who have Lyme and I would never dream of going on to their Facebook wall and telling them that Lyme is really Fibro masked over as Lyme Disease. And furthermore, the tests they are taking are not accurate. I even have a Facebook Friend who was trying to advertise recently! What!? He said this particular brand of Lyme testing was the only one that is accurate anywhere in the USA!

I do not know how  many times or ways I can say this: I know my body. I… do….not… have… Lyme.  And I sure as he** do not appreciate my Facebook page being used as an advertisement page for a Lyme disease test. I have been in this game probably since this guy was in grade school. Do not be condescending to me. I know my stuff when it comes to Fibro if for no other reason: experience. If I say I do not have Lyme, do not pick a fight with me. I understand the passion. But I fail to believe that there is only ONE accurate diagnostic lab in the entire USA. And no, Fibromyalgia is not Lyme ‘disguised as Fibro’. Could it be in some cases? Sure! Is it all the time or even most of the time? No!

Possibly the worst offenders of the stigma of Fibro are family and friends that flat out ignore our illness. They are willing and ready to raise awareness for everything under the sun from autism to cancer; from breastfeeding to the debate on immunizations. However, bring up an illness that affects 200-400 million people worldwide and completely destroys lives, and all of a sudden you are a ‘faking complainer’. I have never disrespected anyone’s cause. I have even shared said and other causes. However, I never or rarely see those closest to me try to raise awareness about Fibro (only I ask or put it on the timeline myself). It is sad and shows….. we are the lepers of today as stated earlier.

We with Fibromyalgia, do not want pity. We do, however, desperately need AWARENESS! From those that think we are ‘lazy fakers’ to those that think we are useless and should be shot; from those that think we really have ‘their’ disease and that Fibro is simply in disguise to within the Fibro community and those who believe in no meds at all and try to make people who take meds feel weak, there is stigma everywhere. Add those who ignore our illness while raising awareness for everyone else and we feel like the lepers of today. It needs to change if we are ever going to find better treatments that are stepping stones to a cure. It appears You Tube finally removed Venicestu’s (it looks to be gone!!! Yay!) comment, but if you wish to check it out to see if you can see it (and report it) the link is:

https://www.youtube.com/watch?v=5109ysHdqQY

Until next time, K.

Last week was Fibromyalgia Awareness Day. I will admit I was a bit disappointed in the numbers. They were lower than an even regular month and last year during Fibromyalgia Awareness month, I had one of my top months of readership. Honestly, it is not so much for Fibromites.  My biggest wish was that NON FIBRO affected people would read this little corner of the internet and pause just a moment to see what our lives are like……. lives destroyed by the R*E*A*L*I*T*Y of Fibromyalgia.

R is for ROAR: Everything roars when you have fibro. From the pounding in your head, to the throbbing of your neck and shoulders, to the piercing cold shooting pains down your arms and legs that can literally knock you down, Fibromyalgia roars like the biggest lion in the jungle. Sadly, it often roars the loudest at 3 AM while the rest of the world soundly sleeps. It is deafening at times, how loud the sound of silence truly roars.

E is for EVERLASTING: The pain is everlasting. If one place calms down a new flare will rear its ugly head in another area of the body. I often joke that my body is a pin ball machine and the ball is a ‘pain ball’ and some unseen force is ‘playing pin ball’ with me. This force is landing the ball in a new place every few days. My video for Fibro awareness alludes to the fact that each day I ‘fight a new dragon’. This reference is also a good comparison. It is frustrating. It is like laundry. When you think you are caught up, someone puts more laundry in the basket.

A is for AWARE: We Fibro Warriors want awareness for our plight. We do not want pity and we do not want to be seen as complainers or drama queens/kings. What we have is very real, very life and soul crushing and can alter the very existence and journey of the Fibromite to the point of complete and utter disability. I feel most of the time as if I simply exist. I have a very low quality of life. I do not live as a normal person lives because each and every thing I do from getting showered and ready for the day to folding a load of clothing takes immense effort. Just grabbing a few items at the store can be overwhelming. Something that is a quick and easy thing done ‘without a second thought’ by a fully functioning person will take us five times as long. Friends forget us and do not invite us, remember us when they come to town or say “Goodbye” when they leave town. Even church family starts keeping its distance. Wait! What would Jesus do? Not what they are doing! Even people who have lost limbs or overcome catastrophic illnesses and recovered have overcome. Fibromyalgia is life long and progressive.

Gnawing, radiating, burning and pain radiating deep to the bone. These are just a few words to describe just the pain aspect of FIbromyalgia.

L is for LIVING, something that gets completely altered when this beast progresses in us.  A recent trip to a museum, for instance, is a prime example. I had to stop and sit every 5-10 minutes. My fatigue was so huge and horrific, it overshadowed most of the joy I got from visiting the museum. I therefore decided that I would make sure Paul got joy and found comfortable seating and thankfully there was plenty available. I sat about 90% of our visit. I then had to take a power nap to go to dinner with our daughter. Dinner, you know, that meal (that when you go out) you sit down and pay someone to serve you. It was as if I was climbing a mountain with giant 50 lb balls chained to each leg. It reminds me of the quote,

“Sometimes even to live is an act of courage.” ~ Seneca

I is for IBS: Good ole’ IBS, for me the most disabling of Fibro’s co-conditions. It is also by far the most ‘bi-polar’ of the conditions. After my 10th time of going, I finally have to ‘reverse thrusters’ and resort to Immodium. After swallowing about twenty inside an hour, I might  feel a let up on the cramping. If not, there are usually more Immodium involved which means in about 5 or so days I am taking stool softeners. It is ugly, it is miserable, it is embarrassing and it keeps you chained to your house. When my Doctor initially disabled me out of work 3 1/2 years ago, my IBS was having me sign off my phone at work up to 10 times per hour for two to three hours. A person cannot work like that! And that is just one of many disabling conditions.

IBS, for me the most disabling of Fibro’s co-conditions, has me doubled up usually about 50% of my week.

T is for TIRED: And I don’t just mean that run of the mill tired that we all seem to have in this day and age, I mean a fatigue so intense, it has literally shut me down like electricity going out during a power outage. I have literally collapsed from fatigue. As Fibromites know, our sleep cycles are that of nights of insomnia followed by a 14 hour “crash and burn”. Our body has to make up for that lost sleep somewhere. Because I also have severe neck problems (unrelated to fibro), I suffer horrific pain with this, especially when I get spasms.The knots can be felt and even seen! I need at least one surgery. And having surgery will not even alleviate all the pain. I recently went through a horrible muscle spasm flare. This went on for about 2 weeks before I went and had my protocol that breaks these spasms up, if only temporarily. A few days later I spent almost 24 hours straight sleeping. I had lost so much sleep in that previous 2 weeks, I was shattered beyond even my wildest expectations.

Y is for Yearning:
Yearning for the one good day among the many bad days; Yearning for a low pain day after several sleepless nights in a row hoping maybe tonight you might get a few hours of uninterrupted sleep; Yearning for the ability to feel a sense of normalcy after realizing how abnormal your crazy, pain filled, fog filled life really is; Yearning to even remember a normal day as I do not remember what normal feels like; Yearning for your gut to just give you some peace; Yearning for people to pay attention as you are not putting up little purple butterflies and noble sayings just for the fun of it. There is a reason; AWARENESS. Most of all,  yearning for a cure. I don’t think I will see it in my lifetime and even if I do, so much damage has been done to my body with 2 decades of Fibro and now a C spine that needs to be rebuilt, it will be too little, too late. However, those sisters and brothers getting a diagnosis today or next year and beyond will reap the rewards of a cure! That is why we must push and never let up for a full on cure. I do not mean ‘patches’ and ‘bandages’ for this cruel and soul crushing existence known as life with Fibromyalgia, let’s push  for a full cure!

If you missed my video on Fibromyalgia Awareness, here is the link:

https://www.youtube.com/watch?v=5109ysHdqQY

Until next time, K.

A*W*A*R*E

Happy Fibromyalgia Awareness Day!!!!!!!!

A:  For the AGONY that we live with day in and day out. From the moment we open our eyes until we fall asleep (if we are so lucky!). From a throbbing head to a gnawing, burning neck, the agony can be and is everywhere. It radiates from deep within our bones to the skin. Yes, it literally hurts to be touched. As I type this, I knew before I looked outside it was a cloudy, wet day. I did not even need to open the curtain, my body told me. Agony. In our bodies, always. Somewhere.

W: For The WARRIORS we have become. Most fold after years of this kind of pain. Most see an end….. even if it is death. We live with this hell day in day out. We are then ridiculed, on a regular basis…… many times by people we love….. and then questioned by society on the validity of our illness. As I type this my neck is burning. It is radiating with a pain so intense it would send a ‘well’ person to the Emergency Room wailing in pain. It would fold a healthy man. My head is pounding. My nose is running. My feet are burning. It is cloudy, but the brightness of the day is too intense. If I were to go outside, I would still need sunglasses. I am tired. My eyes burn. I got 1 hour of sleep laying flat…. the rest, all 4 hours…. was broken sit up sleeping infested by nightmares. Remember too, this is not just one night, this is each and every night!

A: For the ARRIVAL of a CURE or GOOD treatment. A true, real, treatment that gives us a life that lets us LIVE!

R: For Remembering what normal felt like. I do not remember anymore as I have spent 40% of my life now as a Fibromyalgia Warrior. It is all I know and I fear now I will die without ever knowing a cure. I said I would never get a tattoo because you are ‘branded’ for life and life is a constant journey of change. I am not the same person I was even 2, 3 years and especially a decade or more ago. However the one thing that has not changed in 20 years…… Fibromyalgia. This condition has remained constant in everything I have done for the last 20 years and has been pivotal in the way many people have treated me: both good and bad. I may just get a tattoo of the purple Fibro butterfly. I am not even a big fan of purple. I think it is surviving hours on end of the Barney the purple dinosaur. However, even if I live to see a cure, this condition has made its mark on me. I will never forget what it has done to me, my relationships, my health, my dreams and the people it has both brought in and out of my life….. and especially the people I have seen for who they are; good and bad!

E: E is for Eclectic. 🙂 OK, so I had to give me, Kelli the Fibromite a word that is mine. Kelli, the California native, free-spirited, bohemian, open-minded girl (See, if I really try, I do remember who ‘me’ is!) a word that describes me, just me, separate from the confines of Fibromyalgia. But wait, every person I know that has this horrible condition and/or its sister and brother conditions such as M.S., Lupus, R.A., Lyme. etc is Eclectic. We wear so many hats and put on so many faces (usually happy!) for people when we are just thinking, “When can I go home and get my PJ’s on?” in our little think bubble. But who am I? I am Kelli…. a person who loves to make people happy. If I could I would be a flight attendant and writing on the side. If I really could, I would be earning my living, like Danielle Steele, carting off a novel every few months and sipping iced tea on the porch of my beach house on the OBX, flying into ROA once a month to see my kids and Grandkids. Of course they could come to the OBX anytime and see me….. ok think bubble come back… whoa girl, Whoa! Wait! If I made it really big, as in a Bazillionaire territory, I would live in my posh house in San Francisco; my favorite city on earth and the one place I feel I truly ‘belong’ and jet in on my private jet once a month to ROA, hazardous descent be damned! I will just hire Sully as my private pilot! Hey I am rich here, I am thinking big…. BIG! OK, think bubble, we are getting way, way too big.

Seriously though, that is what a broken body is containing. It is containing a soul that wants to just be cut loose. The soul is so willing and the body is so broken. Now my oh so broken fibro ridden body and sick neck is in on the action and the body is not a spring chicken anymore and we have a freakin’ hat trick.

So as I write this Fibro Awareness Day Blog Bomb, If I make no one aware of anything else….. let me set this straight….. so little has changed in twenty years.

I was a young Mom when AIDS was ‘discovered’ and now it is not a death sentence if caught and treated. In fact the virus can become nearly undetectable. This is in less than 30 years! I have seen cancer go from most dying to most living (if caught soon enough). I have seen MS go from a death sentence to manageable. I have seen progression in almost all illnesses I can think of, so pardon the verbiage but WTF is going on with Fibro here? In two decades I went from a med cocktail to a slightly ‘better’ med cocktail. For those who are now thinking, “But Fibromyalgia is not a terminal illness!”. I say, in many ways it is. First, it has an increased suicide rate of 8-10 times the average rate. That is huge! I don’t know a single brother or sister in this plight that has not ‘thought about it’ at least once. I wish I had a $5 bill for every time I had. I am being honest here! For me it is usually at 3 AM when the pain is glaring and the world is sleeping. The white noise is so loud! Remember the song, “The Sound of Silence” by Simon and Garfunkle?  Fibromites, it is our turn, don’t you think?

“F” in Fibromyalgia = Forgotten. We are so often forgotten by our well friends and family. We are viewed as negative or even defective. We are looked at often as being ‘needy’ or even ‘exaggerating’ our illness. My next post is going to be no holds barred and I will take you into the last 3 weeks of my life and the true hell of what it is like to walk on the edge. Many of us…. myself included… feel our life has no purpose. I often feel I am a waste of space and resources. This is truth: plain, hardcore, truth.

I am sorry if this seems blunt, but this is after all, Fibromyalgia Awareness Day. Please be aware, this condition is ugly, painful and it is a destroyer of lives. Until next time, K.

Here is a link to my Awareness 2014 You Tube Video

https://www.youtube.com/watch?v=5109ysHdqQY

and the Fibro Suicide Awareness Video

https://www.youtube.com/watch?v=lzCqzSvUch8

Dedicated to all my Fibromites…… “silence like a cancer grows….the sounds of silence”…. if people knew how loud the quiet really is……..

https://www.youtube.com/watch?v=dTCNwgzM2rQ

This has nothing to do with Fibromyalgia Awareness, but he is so cute, I just wanted to make you smile!

It is that time of year again! We get ‘our’ day Fibromites! Yes, ‘our’ day to try and make others aware of our world, our life, our pain and struggle that we know as Fibromyalgia. I hope at this point some of you reading this do not have Fibromyalgia because the whole point of this blog is to raise awareness!

So, now that I have your attention and a few minutes of your very busy schedule, if I had a wish list, what would I tell someone who I were going to ‘sell my story’ to? Here we go, my Awareness Wish List:

• I hurt always, 24/7 somewhere; I never know a moment that is pain free: Now before I hear, “Well honey, that is just a sign of aging” or “Get used to it”, remember, I was diagnosed at age 32 and had had symptoms for 2-3 years prior to my diagnosis! I have been living this hell for 20 years and it is progressive. I do feel the signs of aging along with the progression of Fibro and a neck that needs re-building. I have been told I could wake up one morning and literally not feel my legs because my neck is so compressed by cervical stenosis (separate issue from Fibro). It is kind of like being in the movie “Groundhog Day”….  you wake up over and over again to the same hell.
• I have a headache everyday: Fibro, Cervical disc herniations with advanced stenosis, hormones, sinus issues and the fact I cannot sleep lying down for more than a couple hours a night (and the last month not at all), and I have a headache every single day with at least 1/2 the week being migraine level. It is hell on earth. I really cannot add to anything other than if you have never suffered with migraines, you just do not have a clue.
• The Fatigue is like being hit by a pack of Elephants: Everyone has had a really bad flu. They cannot move. Every muscle aches. It takes everything in them to just get up and go use the bathroom. Even then you wait until your bladder is about ready to explode because you just have no energy. That is what the Chronic Fatigue part of this condition is like. My technical diagnosis, Fibromyalgia Chronic Fatigue Immune Deficiency Syndrome. I know it is a mouth full, but that is the level of fatigue I feel most of the time. It is the sort of fatigue that levels me and keeps me on the couch, in my PJ’s until 5 PM and then Paul has to come home and cook after working all day. Did I mention he is juggling 3-4 jobs because SSD are ass wipes and cannot get their heads out of their back-sides and get my SSD approved yet people with a fraction of what I go through get approved. One of my best friends cries when she looks at my MRI scan of my stenosis…. a glaring, obvious sign of how ‘sick’ my neck is. Stay tuned for my next blog post on how f___d up our disability system is.
  

  Two herniated discs and advanced stenosis (pressure on the spinal cord; see normal spinal cord at the thoracic level and totally constricted spinal cord at the C spine level). This is separate from my Fibro and causes intense pain, muscle spasms, recurring falls, numb hands and feet among numerous other symptoms. One of my best friends cries every time she sees this picture and my best friend next door cringes when looking at it. I have had numerous friends ask me how I function; my answer, “Not well”. The disability judge said I could be an ‘assembler’. HA! HA!, that is funny, as this causes me to drop 50% of everything I pick up, every single day.

  • Stigma: Yep! Believe it or not with 200-400 million people in the world suffering from Fibromyalgia (roughly the same number as the population of the USA), there is still stigma to this condition! Many people say our illness is not real. They think we are ‘faking’. They think we ‘make our illness up’. I have had ‘friends’ and ‘family’ extended and blood tell me to just “exercise” or “snap out of it”. Sound familiar to any Fibromites? If you are reading this and do not have Fibromyalgia but have Diabetes or Arthritis, how about just ‘snapping out it’ or ‘getting out more’. I, of course, do not mean that. I am just trying to put the shoe on the other foot. And in all fairness, there are many people…. friends and family…. that are very supportive too!  I am lucky in that I test 18 of 18 tender points and my muscle knots can be felt and seen by the naked eye. I also have the tangible (can be seen on scans) neck condition to go with it. Twenty years ago when my neck was x-rayed, I was told (upon finding my kyphosis… reverse curve), within 15 to 20 years I would have arthritis, bone spurs, stenosis, possibly disc herniations and disc degeneration. I have it all. It was as if Dr Johnson Jung in Bakersfield, CA was looking into a crystal ball. He was a fabulous Doctor. Wow, did he nail it. He was good enough to send me to a Neurologist who then sent me to Scripps in La Jolla, CA (San Diego) to get my Fibro diagnosis from the head of Neurology. When I was diagnosed, the head of Neurology at Scripps did not question the validity of Fibromyalgia for a moment. I cannot believe there are some that still do! Shame on anyone that does! Karma will show those that do. This illness is very real.  In the words of one of my favorite bands, “What a long, strange trip it’s been”
  • A Day In The Life: What is a day in the life like for a Fibromite? First if the Fibromite has had sleep, we get out of bed/off the chair/couch/recliner. Many times we need help because morning stiffness is always a given. A throbbing head is usually the first thing to greet us. I often say it is like having a hangover without the fun night to go along with it. That sucks. If I have to feel like crap all the time, I should at least have something to show for this. Getting moving is a slow process. I do not know very many Fibromites that I would call ‘morning people’. Most of us are night owls. We have our daily Dragons to fight. Some days it is headache with gnawing, burning neck spasm and sore ribs (Costochondritis…. which I first got in 1987 after a bout with bronchitis, was this a precursor?). What will I drop today? Will I take a fall? Is it raining? If it is, I will be very sore for sure. It is like having the flu and it never ever going away but add light sensitivity, sensory overload (white noise is so LOUD!), brain fog, insomnia, followed by 14 hour crash and burns, memory loss, anxiety, unforgiving fatigue, depression, loneliness, isolation, the dreaded “Fibroburst” which has only happened to me about a dozen times in 20 years but is akin to what I would think being terminally ill is like and the list could just go on and on and this is just for the Fibro/CFS/ME….. add a neck that is wrecked and well……you know and if you don’t, I hope you are now aware.
    

This pretty well sums it up!

I have had Fibromyalgia for 20 years. That is 40% of my life. I do not even remember what ‘normal’ feels like. When my Fibro was well managed, I think I felt pretty ‘normal’ as I was the all-American Soccer Mom and had a lot of energy. I also had a weight problem. I think it is fair to note I had way more energy at double my body weight than I did after my Roux-en-Y and while my cardiac health looks good on paper, I feel like crap (not the word I want to use, but I do not want to offend anyone!). The numbers can look great, but the body can be screaming a different tune. Pain, Fatigue, muscle spasms….. I may not have a heart attack, but my quality of life is poor. I had dreams and my dreams have been shattered. Fibro took my dreams from me and until there is a cure or effective treatment, I will continue to exist. I just hope the readers of this blog are not only people that share my affliction, but people that need to understand the world we live in; The world of Fibromyalgia. Until next time, K.

Here is the link to my Fibromyalgia Awareness video…. I had to pull the original video and redo some of the music because You Tube is ridiculous about Copyright. It would seem if I play a song on a video it would promote the song…….especially given I bought the song on I tunes to play it on my video. Well, that artist’s loss is an amazing band in Northern Ireland’s gain! Remember, this is all about Fibromyalgia Awareness! So please watch, share and be aware!!!!!

https://www.youtube.com/watch?v=5109ysHdqQY&feature=youtube_gdata

Paul and I were glowing parents, attending our daughter Taylor’s Junior Recital at VCU Palm Sunday weekend. We are so proud of her!  At twenty years old, she has worked her way up to management position at the restaurant she is employed by (and watching her this weekend, she never stops, she is on her feet and going 100 MPH the whole time!). She is both supporting and putting herself through college as a double major. She is balancing a 40 hour work week, a full college load, paying her own bills and is still has the most contagious, wonderful personality in the world. Of course we are proud of all the girls. My oldest daughter is much the same. She balances a full time job, keeps a spotless, beautiful home and is such a good Mother to our amazing Grand-kids. There is plenty of proud to go around.

It was our first long weekend away in eight years. I was nervous from the get go. A lot has changed in eight years. I was not at all organized with the packing. I feel nothing ‘looks good’ on me so I always over pack. I always have and likely always will. I was behind. I did not make a list. That is a bad idea in and of itself. But I got everything together and even having to turn around 10 minutes out because I forgot one of my medications, we were off and going. It is odd, as hard as it is for me to sleep at night, I can fall right asleep in a car and even better in an airplane. I joke at how I wish I could take off each night and fly around Virginia and I am certain I would not have the insomnia issues I do on a regular basis.

I do my best sleeping when in motion; especially on airplanes. This is generally how you will find me on a flight that is longer than an hour. I love the roar of the engines and the gentle motion of the airplane. I wanted to be a  flight attendant as a child so maybe that is why I love to curl up and go into dreamland soaring above the clouds! So it is not a surprise that a car is the next best thing!

Sadly, I cannot climb aboard an airplane every night to greet the sand man. And the car trip, as nice as it was to have a spring time, wind blown nap, did have a destination. Do not get me wrong, it was fun…. wonderful! Amazing even! However, I was humbled beyond the capacity that words can describe just how bad my Fibromyalgia has progressed in the last few years. By the end of the weekend, Paul and I were talking seriously about  buying a motorized wheelchair in the not too distant future, at this point for part time, and if I do not improve or go into a Fibro remission eventually, most likely full time (when out in public). It was sobering. It hit me like a boulder falling from the sky.

I never saw my journey with Fibromyalgia ever leading me to a wheelchair, but after my 3 days on a short trip, in which my husband did *all* the ‘heavy lifting’ and ‘leg work’, by the end of the weekend, we were seriously discussing starting to save money to purchase a used motorized wheelchair.

Stamina? What is that? I don’t remember what stamina is. I don’t even remember what normal is. Friday was ‘fine’ because Paul drove, I slept and then we watched the recital (sitting of course). After Paul checked us in, we grabbed a bite to eat and went back to our room. Even with that I was exhausted. I had sat and slept in a car, sat and watched an amazing recital (our daughter did such a wonderful job! She truly has a God-given gift) and ate (sitting yet again), and those things alone shattered me. Yet Paul, who works 3 jobs because SSD won’t get their head out of their ass (next blog post), was tired but not exhausted….. and he drove 3 hours along with doing all the physical work of the trip!

The next day would prove to be a true eye opener. After tossing and turning in a hard, hotel bed….. even sheer exhaustion had me waking and pacing the floor in the night. I woke up feeling like I had been manhandled by a 600 pound Silver-back Gorilla.

After sleeping in a car while Paul drove, sitting and relaxing to gorgeous music at my daughters recital and actually enjoying a meal out, I was shattered. I tossed and turned in the hard hotel bed, and do not get me wrong, it was a very nice hotel. Hotel beds as a practice are firm.  I paced the floor in the night when it got to be too much. Upon waking, I felt like I had been man-handled by a 600 lb Silver-back Gorilla.

The real eye opener came when we went to The Virginia Museum Of Fine Arts. I had been here before many years ago. We had some time to kill before our daughter got off work and my husband had never been there. It is free and nearly impossible to take in via one trip. So we thought we would go and see what we could, knowing my limitations would slow us down, taking solace that we would be back. This turned out to be a defining moment for me.

I love museums. I always have. I could spend a week doing nothing but going to museums every single day. Art, history, transportation, engineering, everything! I love it all! Art, however, has a special place in my heart. I am a huge fan of Impressionism. Shortly after we entered I was tired nearly straight away. I knew I was in trouble when I was having to sit down every ten minutes. My legs gnawed and burned with pain. It was as if I had 50 pound balls chained to my legs and 25 pound weights chained to each arm. I was literally having to sit every ten minutes, and at times less, and remain sitting for at least 10-15 minutes before resuming. It was sad, frustrating and so sobering.  I felt so bad for Paul I told him to just go on. Luckily there were seats scattered about everywhere and elevators to the various upper levels. Nonetheless, this is when I realized how very dire and advanced my Fibromyalgia is. For those in SSD who have me now at about 40 months of fighting for what is rightfully mine; my Social Security Disability Benefits, oh how I wish they had been following me around. If they had, they would have seen how truly disabled I am. Paul felt bad, but I not only encouraged, I insisted he go on to see various things and I was able to see a few of the galleries, including the Impressionism. I am thankful to the museum for having benches or chairs in every room at every turn of the museum. It was that evening we discussed, seriously, the fact that getting a motorized wheelchair is not a possibility but a reality in the not too distant future. When did it get to this?

In fact I was so exhausted, we had to go back to our room so I could take a power nap  before picking our daughter up for the evening. I am glad we did this as if we had not, I would have had a truly challenging night. We did have a good evening, going to a lovely park and just doing the relaxing zen thing, eating and taking in a movie. We had a good time!

The next day did not prove to be any less challenging and we took in bits of what we wanted in very small doses. We will go back but I fear the same problems only worse as time goes on. For something that is chronic but not life threatening, Fibromyalgia is the most cruel of conditions and trying to ‘explain it’ to someone is impossible. Even Paul who is understanding beyond words gets blown away by the force of this horrible storm that sometimes lightens, is sometimes almost bearable but always blowing its mighty winds in the body of the Fibromite. It is utterly soul crushing.

I think from my perspective, it was not about what I could and could not do, it was about how much I slowed Paul down. He insisted it was ‘no problem’, however, as hard as he works while SSD continues to fight me for what I have spent my life working for (insurance, in the event that I become disabled), he has a lot of hats to wear in our family. It is for that reason that I felt terrible for him. This was his time to just relax. It was not about what I was missing or unable to see, it was about the things he had to give up. In truth, a wheelchair would have made all the difference. It is very hard to admit that to yourself when you are still so young and also so very alive on the inside.

The trip taught me much. It was like a giant slap in the face by a big hand named, Reality. The next few days would also prove to bring it home even further. It goes without saying that I went into a full flare. Mr. Silver-back came back for round two and was twice as rough and I think he went to the top of the tallest tree with me and threw me down. I felt like I had been a pinata at the birthday party of a bunch of frolicking five year old future professional baseball players. However Monday night (the day after we returned home), I had something happen to me that has only happened maybe five to ten times in the nearly twenty years I have had Fibromyalgia. Of course I do not have Fibro only, I also have a very damaged neck. My nerve block wore off several weeks ago  so the spasms and intense pain from my many neck issues have returned. Add that to the fibro flare and the night after we returned I had what I have dubbed a “Fibro-burst”. A Fibro-burst is so intense and overwhelming that I feel it is the closest thing that must come to someone with cancer or a like illness. I moan, whimper and eventually give way to tears. Meds do not touch it. Sitting, laying, standing or any combination does not matter…… it is the most intense of all Fibro related pain. Paul is ready and willing to do anything necessary, but nothing helps. They can last 1/2 an hour to hours on end. I finally was able to fall asleep and I do not even remember how. Nonetheless, these are the times I am glad I do not own a weapon. The Fibroburst is that bad.

A Fibro-burst is an attack of such intense proportion that nothing helps. It is the kind of pain that makes you moan, whimper and eventually succumb to tears. It is like an F5 tornado running rampant through your body, leaving pain, beyond verbal explanation, at every stop.

I am glad we were able to go see our daughter give such a beautiful performance. The trip was about her and seeing her perform at her recital, the rest was just ‘fluff’. However, it did open my eyes to how disabled I truly am. From having to literally sit down every 10 minutes to having a severe attack of IBS the morning we left…… then downing 1/2 a bottle of Imodium so we could just get out of the hotel…..I was humbled beyond words. Nonetheless, I am housebound too much as it stands. I want to enjoy life to the extent I am able. Does this mean that I am able to do much less in a day then a well person? Yes, it does. I accept that is the reality of my life right now. However, it also means I need to swallow my pride and use resources like motorized carts at the store and eventually getting a motorized wheelchair so when able, I am not hindered by a tsunami of fatigue ten minutes after arriving at my destination. My biggest hope in prayer still stands at this: A full cure for Fibromyalgia.  Until next time, K.

Before I start my post, I wanted to let my readers know that if you have had problems loading any of my videos on YouTube to your tablet or iPad, it is YouTube being ridiculous. Yes, I know songs have copyrights, but I am using it to tell a story…. not make money and further more, it is ‘free advertising’ for the song! I am considering alternatives to future videos.. However, as far as I know, the video is coming up fine on laptops and desktop computers.The problem seems to be with tablets and iPads. Now, on with the post.

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There is no cure for Fibromyalgia. Full Stop. There are treatments; medications, natural, holistic and everything in between. I want to make it clear, I am not here to discourage any treatment that is proving beneficial be it through a chiropractor, diet, vitamin cocktail, pool / physical therapy or any other program that helps your Fibro. What helps you may not work for me and vice versa. I don’t like Lyrica…. never did…. but many people do. I love Savella and it has “improved” my situation although it is all relative. I still hurt all the time. Savella has helped to improve it from intolerable to tolerable, not manageable. I will take anything I can get!  I have numerous other health conditions so sadly, I am still fully disabled. I hope and pray to see a cure in my lifetime. Any Tom, James or Henrietta that pitches he or she has all the answers, is looking for one thing; MONEY! This is especially true on YouTube. Ask yourself this question: Would Jonas Salk, the Doctor who created the polio vaccine have needed to advertise on YouTube? Would he take his magic vaccine in a covered wagon and give a big speech? When AIDS was downgraded from a terminal illness to a chronic, manageable illness due to the cocktail that can render someone with HIV down to the point the virus is almost undetectable in blood tests, did the researchers of this protocol advertise their miracle or drive from city to city with a microphone announcing to crowds they had the magic pills? Of course not. Always, Always ask yourself that before leaping to the person that says they have ‘the answer’.

Just the word Polio once made people shudder. Thank you Dr. Salk, a humble research scientist, for making it so my Grandchildren will never have to know the fear but will hear the stories of the crippling affects, iron lungs and worse. Jonas Salk would never have pitched his polio vaccine on You Tube.

So what does the Fibromite do who wants to veer outside medication alone? Here are my suggestions:

1. If you see it advertised on YouTube, Facebook or any other type of social media, really research whatever angle the person is pitching. I watched one guy on YouTube and could only make it through 1/2 the video. He was just talking. He was a used car salesman taking advantage of those in pain who would do anything to make it stop. He started talking about yaks or elk or some like animal and the percentage of their cancer rate. Nothing made sense. It was as if I was Alice and had just walked through the looking glass. Be very leery of those pitching a ‘cure’ because there simply is not one. Always ask: Would Jonas Salk be doing this with his polio vaccine?

2. Do your own research. I have had Fibro for nearly 20 years. I was researching it before the internet and now I continue. I can cite, verbatim, statistics and information about Fibro. I actually had the attention and even slight captivation of a Medical Student who is in an internship program from Virginia Tech. He sat and listened intently and I told him, in great detail, about my conditions (Fibro and neck damage). The same holds true for the last ER Doctor I saw. I think he was stunned that I had an answer, without hesitation, for every question he threw at me. If I know anything, I know Fibro. I also know many people make tons of money on the vulnerability of Fibromites. It infuriates me. Again, while one can go into a Fibro remission (Many years ago I want into Fibro remission for 6 wonderful months), there simply is no cure.

There are a lot of vitamins that claim they are the answer to Fibro. I have done my own research and certainly have an aggressive and unique cocktail of vitamins and minerals I take. However,  I do not take them because someone promised a cure. I take them because of my own research and trial and error on dosages. My numbers on paper (blood work) are excellent.

3. Watch out when buying books. There are many Fibro books out there. I am certainly not saying do not read books, actually quite the opposite. The thing to watch out for is a book claiming to cure Fibro. Knowledge brings empowerment and I encourage reading Fibro books however read with caution! The books by Fibromites about their journey: Fabulous! There is comfort in knowing you are not alone….. that you are indeed not the only one in pain, unable to sleep, having IBS so bad it feels as if your insides are getting ripped out and knowing that you are not the only one labeled as ‘attention seeking’, ‘faking it’ or even worse, ‘trying to seek drugs’. The books I caution my fellow Fibromites about are the books that state, “I have the answer”.  At the risk of repeating myself, would Jonas Salk have written a book about his polio vaccine? No! My advice on books: read with caution. Be guarded. In the words of my late college mentor, “Never buy anything lock, stock and barrel”.

Books! So many books! These are just a few and I am not saying they are good, bad or anything in between. I am just giving an example of the multitude of books available. Remember, there is no cure but there are proven and effective treatments. Those are the ones your Doctor is going to know about. I would be more inclined to buy a book written by a Fibromite who knows what hell it is living with this condition. That is my preference. You are getting it from the source and not some person with an angle, trying to make money.

Here are two books I can highly recommend. They do not offer a ‘cure’, but one offers stories of fellow warriors and the path they have forged while the other offers sound advice from a fellow Fibromite:

http://www.amazon.com/Fibromyalgia-Journeys-Collection-Stories-Personal/dp/0615917887/ref=sr_1_2?s=books&ie=UTF8&qid=1395852920&sr=1-2&keywords=fibromyalgia+shelly+bolton

http://www.amazon.com/Fibromyalgia-Understanding-Journey-Shelly-Bolton/dp/0615778844/ref=sr_1_2?s=books&ie=UTF8&qid=1395852805&sr=1-2&keywords=fibromyalgia+books

4. By all means run with what works! If nerve blocks, eating certain foods, taking certain vitamins, seeing a chiropractor, going to the gym for warm pool therapy or low impact workouts, meditation or any of a number of other alternate treatments help, keep it up! I do not treat my fibro with pills alone. For instance, I do not eat processed foods. I take super doses of iodine for my Hashimoto’s hypothyroidism, I pray…. throughout my day…. talking to God often. I meditate. My hobbies, writing, paper-crafts and the paranormal (from a Godly stance…. no occult here)…. are my passions. I allow myself 1 hour of daytime TV (my guilty pleasure), even if I cannot get up off the couch for the day. I refuse to let my brain go to TV mush.  My last video on YouTube was done in a semi reclined position with my laptop on my abdomen. I am *always* looking for the latest advances. In other words Doctors as well as Fibromyalgia veterans would encourage the Fibromite to seek other avenues besides meds alone. However, do not seek a ‘miracle cure’ because one simply does not exist.

Fibromyalgia is cruel. The pain is relentless, the fatigue is a force not to be reckoned with, the co-conditions such as IBS, insomnia, sensory overload, migraines, brain fog, etc are overwhelming. If you have tangible issues with Fibro such as Spine damage, Diabetes, etc., it compounds the effects even more. I have been up in the long hours of the early morning, pacing the floor with pain, as the rest of the world sleeps soundly. Everything I do from doing a load of laundry to driving to the Doctor takes five times the effort of the average person. I know the desperation of just wanting it to stop. I do not remember what normal feels like. I have not slept all night in a bed, laying flat, all night, since 2011. Therefore I very much understand wanting to believe in these ‘miracle cures’ but the truth is, they simply are ploys on the part of the ‘inventor’ to make money. They are using a debilitating illness for their gain. I am not saying there are not nuggets of good advice with various ‘experts’, however pick and choose wisely and never spend a load of money on what is really glorified snake oil. A good medical team including Doctors and Practitioners who went to school for many years and had intensive training beyond their schooling, taking your medications as directed, a good diet, low impact exercise and more than anything knowledge are your best front line defenses in dealing with this monster. Do not make these dodgy dealers richer, empower yourself and find the path that best suits you!

I would like to share this video. It really hits home for us. It touched my heart beyond words. I think it should be the World Wide Fibro song:

https://www.youtube.com/watch?v=r5yaoMjaAmE

Here is the link to my latest video. As stated earlier, it likely will not work on an ipad or tablet but should work on a laptop or desktop.

https://www.youtube.com/watch?v=2Yz6xKIi_9k&list=UUez7OOB9jAQAyRqnve1G5gg

My video about Fibromyalgia and suicide just passed five thousand views on You Tube. I am very humbled and happy that Fibromyalgia and its plight is trickling out into the world. While I made it to give HOPE to my fellow Fibromites, I also made the video to raise awareness about our day to day battle with this monster and the fact that people with Fibromyalgia have a much higher rate of suicide. I can concur. Let me just say I woke up on Saturday morning with one of the worst migraines I have ever had. I am glad we own no weapons.

Last week I took my 11th fall in six months. Many might think I have recurring falls because of the Fibro but sadly, this is not the case. If you remember me writing “The Tangible Tales” a few posts back, in which I wrote about my neck problems….. 2 disc herniation’s, stenosis, arthritis, bone spurs, kyphosis, degenerative disc, etc., it is the pressure on my spinal cord that causes these falls. This fall was bad. It was in the parking lot of Kroger and I went down with NO warning. The fall was hard. Even though I was layered in winter clothing and a thick coat, I still have scrapes and a bad knee abrasion that looks like it is getting infected. I am still quite sore, six days later. So I have pretty much been down for the count since then. I decided to do another video on Fibro from my eyes and and loosely base it on my experience. I did this video literally from a semi-lying / reclined position on my couch. For two days I got up just to do the bare minimum….shower and use the facilities. My poor husband had to cook dinner or grab Subway or pizza every night for the last week. He is a Saint!

I proudly introduce, “Fibromyalgia, What It Is Like, From My Eyes”

https://www.youtube.com/watch?v=2Yz6xKIi_9k

Until next time, K.

I am part Italian on my Mother’s side. Albeit, she was not raised by her biological Mom from age 6, the Italian blood runs deep. I am sure this does not help that while I am usually “sweet and easy going”. when I have had enough of something….. like a smug pharmacist, I blow like Mount Vesuvius. Life with Fibromyalgia and other chronic pain conditions are difficult enough, but to have a major upheaval in your life, one car to share, a husband working upwards of 50- 60+ hours a week and still fighting for your disability 38 months after applying, the last thing you need is a Pharmacist not willing to work with your overworked husband, one car family or telling you when or if you finally get to go on a trip and your refill is due in the ‘middle of a vacation/ trip’ (if that were to happen), you have to have it transferred, “ONLY OPTION!”. Excuse me? “Certain meds can only be transferred once! So I transfer it to ‘wherever’ and leave it?”.  “That is your only option” he shrugs. One thing is for certain, he has those eyes… and I have known for a long, long time……. he sees me as a ‘drug seeker’. Nothing in this world makes me more angry than to be labeled as something I simply am….. not.

I have never had any problems with any pharmacist anywhere and save for one girl at this pharmacy that I do not consider ‘overly friendly’; she is just not a ‘happy person’, everyone else there seems pleasant and respectful. I will ignore the time I walked up, heard my name, someone saw me, gave eye contact to the other employees and the conversation quickly diverted. This is what I get for adhering to a strict pain contract? It is not always easy. At 3 AM when NOTHING is helping and the entire world around you sleeps (except trash collectors in the distance…. my how sound travels). But I do it! I do pill counts…. with Paul… at least once a week. I pre count my meds out into my ‘old person pill keeper’. Doing it right simply is not enough. Most of the time, because of Paul’s hectic schedule, I simply cannot get in the exact day it expires. Many times I call in a day or two early…. I have even OVERSHOT IT because I have had pills left over. I know without a doubt that never gets noticed. Nope! Many of ‘us’ have and will be labeled as drug seekers, sooner or later.

 Respect? No. I most certainly do not have that. At least not from certain people. Now my Doctor’s ‘get me’ and ‘get it’. They know my story. They have seen the scans and test results and they know my history. In fact my pain management Doctor is ‘surprised’ I am getting the relief I am with the low doses of medication I am on. Does that sound like someone ‘pushing the envelope’ of oblivion seeking? Let me tell all well people reading this a little secret. NOTHING helps. You could take every pain pill in the world, line them up in order and give me the strongest one in line in a double or even triple dose and it will not make all the pain go away.The pain ever goes away. The intense pressure on my spine from 2 herniated discs and severe Stenosis (along with a full laundry list of other issues) along with the Fibromyalgia and  hands down, always, the pain will win. In fact when in hospital with my last three surgeries; one emergency surgery and two elective), it was the NON NARCOTIC Toradol shots that sped past my morphine pump and tapered off the ‘break through’ pain. If they could put Toradol in a patch, I am in! It is what I take at the ER every few months to break up stubborn cervical muscle spasms. No euphoria. No ‘high’. But my, what a heat seeking little wonder this mega NSAID is! If Toradol had a fan club, I would be the President!So what do you do when you are labeled or it is being insinuated that you are drug seeking? Well, you can blow like Mount Vesuvius like I did to the smug pharmacist who will not listen to a person and what their life is like and why they cannot come in on certain days. I am NOT a person to him, I am someone he can control. I have been around enough judgmental control freaks in my life to know one when I meet one. Honestly, they gave a very sweet lady pharmacist in there and if I had it my way, she would be the head pharmacist. She has a heart!
You can issue a complaint. There is a phone call in my afternoon…. waiting and ready to happen.
I suggest their immediate district manager and if they back their guy and do not listen, call the CEO of the company. I have done it many times in various instances……. both good and bad. This will usually get your somewhere…..especially if you bring in a lot of business for the store.

No matter what, however, I am now glad he knows that I know what he thinks of me. He is judging me yet does he for one moment understand my life? No. Anyone that says ‘Too bad if the script runs out…. nothing we can do’ when looking at having your first small vacation in 9 years; that is not a person with feelings. That is a person that is heartless, judgmental and worse, does not give a rats backside about the patients he serves. Honestly? I think he would do better seeking a new career. As for me, I work too hard to make sure I stay as low as I can and to the book on my meds to have someone like him label me. Let the process of ball rolling begin. I am so done with people like him! Karma….. karma is a lovely lady and someday he will need compassion and understanding and find no one wants to extend it to him.

If you have not yet checked out my You Tube Video on Suicide Awareness for Fibromyalgia, here is the link!

https://www.youtube.com/watch?v=lzCqzSvUch8

Until next time, K.

If someone were to come to me today, tell me they were newly diagnosed with Fibromyalgia and ask me to offer them a few pieces of pertinent information, one of the most important bits of advice I would offer is that it is imperative with this condition to have your “Medical Dream Team” in place. Fibromyalgia is not something you have and eventually savor in recovery. Until a cure is found, unfortunately Fibromyalgia is a life sentence. This means the Fibro warrior will be seeing at least two and probably closer to four Doctors on a somewhat regular basis. With this team of Physicians, we need several behaviors and practices to be in place. As with anything, I would suggest starting from scratch and building up. The first thing the Fibromite needs is a good:

• Primary care Physician: This can be a Family Practice, General Practitioner or Internist. Because I have so many other health issues, I see an Internist. Nonetheless, if you have a good Family or General Practice Doctor, there is no need to run and change if you have a half dozen other fires that need stomping on a regular basis. As they say, “If it is not broke, do not fix it”. On the other hand, if you are less than pleased with your ‘home Doctor’ it might be time to start inquiring. My primary care physician is amazing. He is kind, helpful, listens, extremely knowledgeable, spends time with his patients and the thing I respect most in a Doctor, if he is not 150% sure about something, he will go look it up and / or inquire further. That is not a sign of weakness, that is a sign of a Doctor wanting to get it right! Doctors for the most part are fabulous and smart. However, no matter how good any of us are at our craft, we all have to look things up from time to time. Many times your Primary Care Physician will be the one to refer you to a specialist. So this is one we all want to get right! You may have to go through a few bad apples before finding the golden, sweet and juicy one. But once you do, you will be confident that your Doctor has your back.

• Search! Search! Search!: Once the time comes to see a Pain Management Specialist and other various Specialists, The Fibromite will again want to look for the cream of the crop. There are a lot of crappy Doctors out there. Trust me! Be honest with your Primary Care Physician. Tell him or her that you may need to go through a few Doctors before finding the right one. Get him or her on the same page so they understand that if you do not like the first specialist, you are not staying and will need a 2nd or even 3rd referral. You need to be happy, confident and relaxed with your medical team.  You may have to drive to another city. I grew up 1 1/2 hours north of Los Angeles. The city I grew up in was by no means small. However, we were known for getting all the LA and San Francisco ‘rejects’ in the Doctor community. I myself was diagnosed with Fibro at the Scripps Institute near San Diego, a three hour drive from my hometown. I now live in a medium sized city about 1/2 way between Washington DC and Charlotte NC. There are good Doctors here, and most know who the good vs. the not so good are. Nonetheless, you also have to click with your Doctor. Adding that variable can make finding the right Doctor tricky. We have many people here that drive in from West Virginia and the rural areas. We also have people here drive 1 1/2 hours to UVA to the north and 2 hours south to Duke and Chapel Hill, both in North Carolina. Do not settle!

• Be Open, Be Honest: Once you have your team of Doctors and practitioners in place, it is imperative that you be open and honest with them. This is especially true with Pain Management. Pain Management Doctors are under immense pressure from the Drug Enforcement Administration (DEA) to follow extraordinarily strict guidelines. Missing any one of these whether by accident or ‘bending the rules’ could strike them of their license to practice medicine, or worse, in an instant. I had  a horrible Pain Management Doctor until last summer. It was not until he bullied me into signing a Psychiatric Release by lying to me that I took action. Knowing I had 2 months of medication…… the primary medication I had been begging to be changed for months as it was much stronger than I wanted and not used as standard pain relief for any condition, that I then saw my Primary Care Physician. I explained everything and he proceeded to set me set up with a new Pain Management Doctor. My new specialist is wonderful. He is everything my Primary Care Doctor is: caring, respectful and does not ever leave that room until every concern I have has been addressed. I have learned more about my neck condition in the last 6 months then I have in the last 1 1/2 years!  I, however,  must be open and honest. For instance, I have to go to the ER every few months because of a muscle spasm. I am able to not jeopardize my pain contract (I refuse opiates at the ER) and instead am able to take a prescription NSAID called Toradal (via shot only for me, of course), and a small amount of valium for just a day or two which serves to relax the spasm. This serves to ‘break it up’. My Pain Management Doctor, knowing how bad my neck issues are, has given his blessings to this protocol. We must be open and honest. This is how we earn a Doctor’s respect and they in turn want to further champion for us!
• Champion For Yourself! Never Settle!: If you truly feel your Doctor at any level of your ‘team’ is less than their best, do not settle! I was diagnosed with Fibromyalgia in the spring of 1996. I have since lived in three different states and seen more Doctors than I can count. I have seen bad….. oh have I seen bad. I have seen mediocre and honestly, these are usually Doctors that want to help but don’t know enough about Fibromyalgia to know what to do. It does not make them a bad Doctor, it simply means Fibro is not their specialty. Would your take your broken transmission to a brake shop? The brake team would do an excellent job of repairing your brakes and while they might know a bit about transmissions, calling them ‘bad mechanics’ because they don’t know what to do about the transmission problem is highly unfair. As stated, my own Primary Care Doctor has said he is not an ‘expert’ on Fibro and does not understand ‘how’ it is caused but he knows it is very REAL. You may go through 1/2 a dozen Doctors and end up traveling to the nearest big city. That is OK! I would travel for my medical ‘dream team’ I have in place. There is not a one that I would replace for anything.

There are many things of great importance to those with Fibromyalgia. It goes without saying that building that medical dream team is at the top of the list. Without good, caring, respectful and receptive Doctors and practitioners who care about our well being and are passionate about helping their patients achieve maximum quality of life, Fibro patients will be unheard and over or under medicated. There are so many treatments that involve using medications that do not ‘drug’ the patient up in tandem with such things as nerve blocks, trigger point injections and many other things. Also the latest meds such as Savella (I am the poster girl and biggest fan for this med!), Lyrica and Cymbalta, we are getting there. Having that good, solid connection with an excellent health care provider is a huge part of this battle. Never settle for less than what you deserve.

I would like to dedicate this post to my medical ‘dream team’, Dr Mark Schleupner, Internist;  Dr Cyris Bakhit, Pain Management; Dr Richard Leggett, Psychiatrist; Dr Mark Gustafson, Gynecologist; and my dentist….the sweetest person on earth, Dr Nathan Stephens DDS, yes, 2013 goes down as the year I got my medical dream team, finally. But you know the saying, ‘you have to kiss a lot of frogs before you get the prince’. 

Honorable Mention to:  Dr. A. Reif Kessler, Surgeon, who saved my life during an emergency surgery in July 2011. That was one tough undertaking and I do not know if Dr Kessler will ever know how grateful I am that he is the one who took the 3 AM phone call from Lewis Gale ER that they had a very dire case that needed immediate surgery.

Make 2014 the year you find your medical dream team.  Do not settle for less. You are worth it! Until next time, K.