It is here! It is that one day for ‘us’…. those of us with the ‘invisible’ illness… condition…. disease….. however you want to define it; that which would be known as, fibromyalgia. As a near twenty year veteran of this soul-crushing malady, what would I want to choose to make people most ‘aware’ of if I had center stage and full attention of the world? If the world were my audience and I had the biggest bullhorn known to human-kind… what would I make them aware of regarding this…. this….. fibromyalgia! This is the thought I have been kicking around and that is the direction I am taking this blog post. I have the attention of billions of people who did not know much, if anything, about fibromyalgia! Here I go!

• I WOULD CHOOSE TO MAKE PEOPLE AWARE:  24/7,  NON-STOPPING PAIN: Pain is the obvious symptom, forefront of fibromyalgia. My first symptom, many, many moons ago was numbness in my hips. As a new mother of my beautiful, amazing (youngest) infant daughter, I did not realize that the very thing that triggered my fibromyalgia; getting the chicken pox aka the Varicella Zoster Virus, at 18 weeks pregnant, and then getting the shingles (same virus) 4 weeks later would leave me “never feeling the same again”. I have said this before and I will say this again: I in no way, shape or form blame this on the pregnancy. I would have gotten the chicken pox pregnant or not. The fact that I was pregnant only served to worry me sick that I had in some way harmed my unborn daughter. The running joke now… because she is as close to perfect as it gets is…..  If it wasn’t for those testy chicken pox, she would be giving Sheldon Cooper (“The Big Bang Theory”) a run for his money. Instead of a gifted double majoring (College) flute player, she would be a super nuclear scientist in some lab somewhere. Naw, too boring. I will take my delightful, colorful, talented daughter just as she is 😉 (and you all know this is a joke!…not that she is gifted…. that I would take her any other way than just as she is… back to the point). The truth is, I got the pox, I was more worried what they would do to her (nothing), and they are what started the fibromyalgia (I was never the same after getting them). In any event, the pain that we with fibro have it…. it never stops. It sometimes lessens, but it never goes away. If you are a non-fibro patient reading this, imagine having a headache, flu or being sore after exercising. Now imagine that never stopping. Never. Not a day. Not an hour. Not a minute. No relief. Ever. That is the life we lead with our pain. It goes on and on. The medications we take? They do not make the pain go away, they simply dull it….. a little bit.

• I WOULD CHOOSE TO MAKE PEOPLE AWARE: THAT I HAVE A HEADACHE EVERY SINGLE DAY:  I would say that about one third to one quarter of my month would be labeled as bad headache days. The rest of those days I just get ‘day to day dull headaches’. I do, in any event, always have a headache (note I did not say ‘get’ because there is no get when there is no beginning or end… it is always there). It is rare to find any given moment in time when I do not have some form of headache. Whether it is small or pounding, my head always hurts in some fashion. It does not matter if I have gotten a good amount of sleep or if I am sliding by on just a few hours, my head will be hurting. Most fibro patients have the same problem. Headaches are one of the most common shared problems among those of us with fibro. While I understand headaches are a very common problem in society as a whole, this is a very good common denominator to share with people. Imagine as a normal person struggling with headache you are also aching all over, having issues with your gut, every light is too bright, every smell is overwhelming every single thing you touch is over stimulating and you have to watch everything you eat because even the mildest of spices sends your taste buds into total over-reaction. Now imagine all this is going on and you are nervous and anxious. On top of this you cannot sleep properly. To make matters worse, you are being labeled and judged. This is not just a ‘run of the mill’ headache anymore. This is a headache on top of a roaring, angry volcano. Some of the headache days are migraines (I had an eight day string up until just a few days ago). I average about three to eight migraines a month. Migraines are bad enough alone, but add everything else and…. well, I need no further explanation.
  
• I WOULD CHOOSE TO MAKE PEOPLE AWARE: THAT MY ‘GUT’ IS ALWAYS HAVING ISSUES: Most fibro patients suffer from Irritable Bowel Syndrome. I will try to keep this from being a ‘TMI’ moment, all the same, I would be doing a great disservice if I sugar coated what a messed up middle area I have. Nearly every fellow warrior in this condition of catastrophe can attest. I don’t know that I am acquainted with a single fibro friend that does not have IBS or other stomach/intestinal issues. Many have things that are tangible (show up on scans, blood tests, etc.) such as ulcers, diveriticulitis, Chron’s, etc. Nausea is very common and in fact I take anti-nausea medications on a daily basis. Some symptoms overlap. For instance my nausea can be worsened by headaches or disequilibrium (related to sensory overload) thereby making the nausea coming from more than one source. So along with pain and headaches, the gut gets its share of the attention.           
• I WOULD CHOOSE TO MAKE PEOPLE AWARE:
  THAT MY SLEEP PATTERNS ARE UNSTABLE , MY SLEEP QUALITY IS POOR AND MARKED BY SIGNIFICANT INSOMNIA: I am, at times, a walking zombie. I know years back there are those that thought I was ‘over medicated’ and there were those in my life that talked behind my back regarding this matter (did they really think I was not aware of this?). I was not over medicated then and I am even less medicated (and in much more in pain) now. Then, now: it stinks! I do not go to bed after the 11 PM news and go to sleep for the night like 90% of the population. I do not go to bed and read a good book until I start drifting off to dreamland (I am thinking of every TV show in existence when wife is in bed with her book and husband is talking over their current situation for that episode). No, 99% of the time I fall asleep on the couch. I have an amazing husband who rubs my neck, shoulders, arms (the last several months my arms have really been giving me high pain levels), or he does reflexology on my feet. ‘He’ is by far my most relaxing ‘medication’. At some point I transition to bed. Sometimes my transition is when he is going to bed between about 12 midnight and 1 AM; other times it can be as early as 2 AM and as late as 6 AM. If it is any later than 6 AM, I do not usually bother going to bed or if I do, I just lay on top of the comforter with a throw rather than ‘get into bed’.  I wake up every few hours wherever I slumber. Always. Sometimes, depending on whether my neck is not doing well or if I am getting a headache, I have to come back to the couch and try to finish sleeping the rest of the night in a sitting up position. I never sleep straight through the night laying in a bed. I am going to repeat that. I *never* sleep in a bed for a full night, go to bed, lay down, sleep for several uninterrupted hours and awaken in the morning with maybe one bathroom wake up in the night. Unless I am at the point where I have hit the wall with complete and utter physical exhaustion, going to bed and sleeping the night through does not and has not existed in my world for many, many years. Now, of course I have a pesky recurring nightmare that wakes me; heart racing, adrenaline pumping and very glad to ‘know it was all just a bad dream’. I need to call the “Dream/Nightmare Busters” I reckon. Nonetheless, unstable sleep patterns marked by bouts of insomnia are the rule and not the exception (I am typing this at 5:07 AM and have been awake since 2 AM) . This latest ‘addition’ of my recurring nightmare (most likely due to some repressed memories I am now, well, remembering from my childhood) are making getting quality sleep even worse! I won’t elaborate on this other than to say it just adds insult to injury….. I have a tough enough time attacking the sleeping monsters. Now with this recurring nightmare, it just adds one more obstacle to getting some good zzzzzz’s.
• I WOULD CHOOSE TO MAKE PEOPLE AWARE: WE ARE  ALSO MORE PRONE TO DEPRESSION AND ANXIETY WHICH INCLUDES EXTREMELY ESCALATED SUICIDE RATES:
  I, along with most of my sisters and brothers in this walk known as fibromyalgia, suffer from depression and some of us also suffer anxiety. If you hurt every moment of every day, did not sleep for more than two hours at a stretch, had a stomach that was either upset, cramping or causing some sort of intestinal ‘issue’ aka IBS (meaning you could not be far from your bathroom) and if your senses were totally overloaded meaning everything from light , smells, sound, tactile, etc were turned up to the top, super max ‘volume’……and to top it all off you were labeled as ‘having an invisible illness’ or being ‘negative’ because you choose to inform and raise awareness, I can guarantee, you would be depressed too. I have not even touched on how the serotonin in brain and how that relates to people with fibro…..at least in most people with fibro (because thinking on it is shifting to it being a neurological based condition rather than in the muscles themselves) so that means the serotonin is likely off kilter. If you add all the sensory overload, you also have a greenhouse for anxiety. Most people I know who have advanced fibro have both depression and anxiety. I don’t think it needs further explaining. All the same, it does bear mentioning with the stigma we already have with this condition, having depression and / or anxiety added just makes it all the more bleak. One study I looked at,  on “Reuters” cited, “Danish researchers looking at death rates in women diagnosed with this chronic pain condition found that the risk of death from suicide was ten times higher than in the general population.”
  • http://www.reuters.com/article/2010/07/16/us-fibromyalgia-suicide-idUSTRE66F3JJ20100716  Another study in “Phoenix Rising” http://phoenixrising.me/archives/12027  cited suicide rates as being eight times higher. Though I know I cited this in my last blog, this is sad but while there are a lot of ‘studies’ as in college research papers and fellow bloggers, there are not a lot of real hard core studies like the Danish study and Phoenix Rising. 🙁 We need more studies! People are dying BECAUSE of this…. maybe not FROM IT but they are DYING OF IT in a round about way! WAKE UP! BE AWARE!  And while flattered to have found my own blog hit number 2 in the google search (looking for suicide rates), it is sad that more people are not A*W*A*R*E enough that FIBRO patients are THREE TIMES more LIKELY to COMMIT SUICIDE Than the general population!!!!!!! (*thirdage.com).
  • I WOULD CHOOSE TO MAKE PEOPLE AWARE: BRAINFOG:
    Imagine going about your day. Imagine going to work, cleaning your house, tending to laundry, running errands, cooking dinner and even partaking in things you enjoy…. hobbies, music, etc…. only everything you do is through a dense, soupy fog. Every thought you think is muddled. You cannot find the words… though you consider yourself the luckiest woman alive because you have a husband who understands this so well and can fill in a word for you when you need it on a dime! Imagine everything you do…. from the smallest, most minute task being a challenge. Welcome to the life of BRAINFOG/ FIBROFOG!

  Now I told you I was collecting theories here for a later post so (theory check) in place for later.  First and foremost, NO, WE ARE NOT OVER MEDICATED! I want to nip that one first off the bat. I know a lot of people love to ‘think that’ but sorry to spoil your theory… it just is not the case. In fact my fog is worse than it has ever been and I am less medicated now than I have ever been.  In any case, my Dad was the Post It king! He had post-its everywhere and it worked for him! For true ‘absent minded’ people like my own husband…. things like post-its and other reminders are great! For true brain/fibro fog, it is a totally different world! I can tell you birthdays of three of my closest friends in school….. May 20th and April 5th for two grammar school friends and November 19th for my best friend in High School. My step brother is a Halloween baby and my step sister checking in a few years later and a week or so shy on October 23rd, I believe or very close. And no, I did not go look it up on their Facebook accounts. In fact three out of five of those people do not even have Facebook and / or I have lost track of them. My long term memory is great! Fabulous! Finding a word I need for my next spoken sentence….. finding what I need when I walk in the room! Reading! Oh do not even get me started on reading! I am desperately trying to get back this one thing fibro has taken from me! Fibromyalgia has robbed me blind! It has taken so much from me! I can read online until the cows come home and plow out 3 blogs with new posts every ten days. However, sitting down and opening a…… book…….I do not know what it is about it. I read five, maybe ten pages top and I am asleep or get distracted or…. or…. or…. or________.? Anything, really. I have already typed over 2,300 words for this blog post and I am about 2/3 done. I have hundreds of more words blazing to fire out of these fingers. All the same, you sit me with a gorgeous, wonderful book and …. insert that cheesy Clint Eastwood “Spaghetti Western” music and the book and me having a stand-off at high noon!If fibrofog could just give me reading back, I think I could live with having to have Paul fill in every 5th word to running interference when even the smallest things don’t go right. A perfect example is the Friday night he came home from his 2nd job and found me sound asleep with my dinner, uneaten, on my lap. I was sitting straight up on the couch and my dinner was right there, cold and uneaten. You know when people say, “Just push through it!” Well see, that is what happens to me when I ‘push through it’. I ‘pushed’ too hard and by the grace of God the pot of Mushroom Stroganoff  did not burn up! That is why I cannot push through it! I literally collapse in exhaustion. But see, I am not ‘you’ or ‘you’ or ‘him’ or ‘her’ and this is what people need to be aware of!So fibrofog / brainfog is very frustrating and time consuming. I would estimate I spend a good 2 hours a day just over compensating for the obstacles that brain fog throw at me. In spite of the ‘fog’, I do what I can to maintain and do the things I love. Though I cannot work anymore, I try to remain active in my hobbies. I am trying to find a way to get back to the 70+ books I want to read and I am a very stubborn person so I am sure I will find a way! I am also intent on making people aware about this monster aka as Fibromyalgia and Chronic Fatigue Syndrome.

IN SPITE OF IT ALL, I REALLY DO HAVE A WICKED SENSE OF HUMOR AND DO WHAT I CAN TO MAINTAIN THAT! AFTER ALL LAUGHTER IS THE BEST MEDICINE!

• I WOULD CHOOSE TO MAKE PEOPLE AWARE: WHEN WE GET AN EVERYDAY VIRUS IT ATTACKS US TWICE AS HARD AND TWICE AS LONG:
  Any cold, flu bug, any little bug that is going around…… if someone with (especially progressed) fibromyalgia. I know people think I am paranoid about ‘germs’ but if they knew…. oh if they knew. My last ‘ordeal’ was front and center of my Facebook in tandem with a blog post as I was having some ‘all-nighters’ due to not being able to sleep because of being so uncomfortable from the cold/flu virus that set in with my husband as a ‘mild, one-day cold’. Mild cold for him = 8 days of utter misery for me. On top of it, I had an abscessed tooth which actually sent me to the Emergency Room one evening.
• I WOULD CHOOSE TO MAKE PEOPLE AWARE: ABOUT FLARES  Probably the worst of the worst thing about having fibromyalgia is when you ‘flare’. All a flare really is is what you already have; AMPLIFIED!!!!!!!! Your body is saying , “Hey there! You over did it!” In any event a flare simply means; we with fibromyalgia pushed ourselves too hard. We over did it. We just plain should not have done whatever it is we did to the extent that we did it…. or at the very least we did do what we knowing good and well we would, well, flare.  Sometimes we make that choice…. because it means we have gotten out and LIVED. Going out once or twice a month for three to four hours (after careful, calculated planning and a lot of resting…. believe me, because when I know I have plans, I do rest and take other measures… no errands or appointments the day before, only THAT activity that day, etc)…. anyway, resuming…. when we go out ONCE for three or four hours, and then flare for a week, it does NOT mean we can work 8 hours a day, 7 days a week. Think about it. We would be in the hospital with exhaustion in a matter of days. When I flare, I usually walk hunched over like a ninety year old woman for the first 1/2 hour of the day. Every inch of my body hurts…. worse than just normal fibro pain; intense throbbing pain. My intestines are in fits and I cannot go far from home because I need to be near my ‘facilities’. My last flare had me in an IBS flare for eight days and feeling like “Cousin Guido” took the brass knuckles and gut punched me a few times.  My head pounds. I generally ‘crash and burn’ (the night Paul found me sitting upright, sleeping sound with my uneaten dinner on my lap is the perfect example). My fingers ache…..I mean ache to the deepest depth of the bone! My arms ache and throb. I swear, my hair hurts! I get hoarse. You can always tell I am flaring if I am hoarse! This has caused me more grief in trying to plan calls to people…. especially my Uncle David in California!…. because I literally have no voice! I have called Uncle David and literally had my voice disappear over the coarse of the phone call! So who says this is ‘all in my head’…. how do you fake that one!? My muscles knot up. You can physically see them….  how do you ‘fake’ muscle knots? Paul is amazing. He just rubs and rubs and rubs them until his fingers are sore. When his fingers get sore, we have a little plastic three prong massage device he uses to apply pressure to the knotted area.
  

  PAUL USES THE AIDE OF “MASSAGERS” TO KNEAD MY MANY MUSCLE KNOTS…. ESPECIALLY IN MY NECK AND BACK: THESE ARE TWO OF MY FAVORITES. HIS HANDS QUICKLY GET SORE SO BY USING THESE TO APPLY PRESSURE, HE CAN HELP BREAK SOME OF MY MANY MUSCLE KNOTS WITHOUT CRAMPING THE MUSCLES IN HIS OVER-WORKED, TIRED HANDS. THE MAN IS A SAINT!

  A lot of people assume ‘we’ are over-medicated at the time of a flare when usually just the opposite is true. I tend to back off my meds as much as possible when I know I am going to go somewhere that requires a little extra ‘physically’, hence, setting me up even more for the dreaded, flare. Assumptions are just as bad as any illness.

• I WOULD CHOOSE TO MAKE PEOPLE AWARE: ABOUT THE JUDGMENT AND STIGMA WE CARRY EVERYDAY AND EVERYWHERE WE GO.
  Having fibromyalgia is so much more than just hurting, chronic headaches, brainfog and depression with anxiety, etc. As if all of that were not enough, we are the “Lepers” of current day! We are the most judged illness and the only illness I know where an actual Facebook page *was* (I say was because we got two… not just one but two name changes for this ignorant troll deeming himself a ‘hypnotherapist’). It took a lot of us sending in numerous reports on a daily basis. I have nearly 400 Facebook friends and I would say nearly 1/3 of those have pain issues! Yet trying to get this page reported was like fighting a lone war (well not true there were over 100 of us ). This man was just mean. Yes! That is sure the way to get my attention! Say my illness is all ‘in my head’ and that I am a ‘whiner’. Good job….. not! No, he just proceeded to piss me off and in the process make me for fervent in my quest with Facebook that if a page existed that said, “Stop the whining, diabetes is all in your head!” or “Stop the whining, cancer is all in your head!” that those pages would be yanked in a nano second. However, Facebook *finally* saw it for what it was, yanked it, the guy had to change it twice and I won’t give him credit, so I will *not* be saying what it is called, but it is not demeaning, though if he were the *only* health care ‘provider’ on earth, I would go without because anyone that is treating someone and they treat their condition in such a disrespectful manner is not ethical in any way, shape or form.      He is just one example, sadly there are thousands more like him! People that think we are ‘lazy’, ‘over-medicated’ , ‘whiners’ who just ‘don’t push through it’ and need to ‘tough it out’. OK, well, you can pay my next round of hospital bills when I ‘push through it’ and collapse. I am busy trying to figure out how to pay the co pays for the over $150K I am still trying to pay off with the emergency surgery and various tests (CT, MRI’s, x rays, etc). I do NOT want pity! I just want fairness and recognition in my illness. I want people to know my pain, shattering fatigue, flares, IBS and other gut issues, headaches, brainfog, sensory overload, etc. are real and are absolutely soul-crushing! People are taking their own lives… in women up to 10 times over the average rate! If that is not real, I do not know what is! The stigma associated with this must stop! It stops here and it stops now! So me and my bullhorn would say all of that and probably a whole lot more. Albeit, if I had the world’s attention….. knowing how people’s attention spans work….. I would want to get in the important things.  Now what can people do, really? One thing hit me the other day, this being graduation season. I was reading about Mayim Bialik (formerly “Blossom” now known as Amy Farrah Fowler on “The Big Bang Theory”, mine and Paul’s favorite comedy… absolutely inspired!). In real life, like her character, she has a PHD in neuroscience. Her dissertation was an investigation of hypothalamic activity in patients with Prader-Willi syndrome. Now what does that have to do with fibro? Nothing. However, dissertation did get my wheels a turning! Why aren’t college kids all over fibromyalgia? It is moving from the school of that that it is a muscle issue (look for a later blog post on this) to a neurological disorder! I searched and found that companies are willing to write a dissertation for you if you pay them. What? I thought the point of the sacred dissertation was to show them “what you’ve got!” Why would you pay someone to write a dissertation for you! I also found a few…. that you could pay to view. Why would I pay $25 to view something containing information I can get on Google for free? I did find one from 2007… and I do not say this to be mean, but I could have written it! Seriously, I thought, “This is the sacred dissertation” ? It was adequate, but it just looked like a ‘term paper’ as we called them back when I was going to college; back when dinosaurs roamed the earth and we walked a mile to school in the 100 degree heat, barefooted. It was also lacked passion, in my opinion. One other thing…. it cited a study: with ten women. The urine of ten women. Really? Ten women? The writer is going to do a study using ten women? Real, true and tried studies involve hundreds of people. As I have said time and time again, while women are the highest percentage of fibromyalgia patients, men, teens and children are not immune. Nonetheless, even if she was choosing to just use women as a control group, no good study can come of just ten women. Then to further add she claims depression as the underlying factor. I am insulted. I propose …. no I plead! We need studies! We need college students to embark on true, from-the-heart dissertations. I would love to Google search in two to three years and find pages and pages of wonderful, informative and well thought out dissertations. So I make a plea to parents of kids embarking on a career in medicine, psychology, physical therapy or anything even remotely related: I challenge you or your rising college student to do their dissertation on fibromyalgia…. in any manner they choose to word or present it. It is with continued studies and awareness that then and only then will a CURE finally be found! And that is the golden ticket all of us with fibro wish for on our wishing star each and every night!May 12th is not just Mothers Day and though Mothers Day is very important (I am a Mom, and I know all too well how precious any contact…. a call, a text….. anything is cherished on that day), it is also a day for us; those suffering from this life-sucking parasite known as Fibromyalgia/ Chronic Fatigue Immune Deficiency Syndrome. Won’t you please take a few moments in the next few days to become enlightened to our lives, or lack thereof. We live life on the sidelines for the most part, plucking bits of happiness where we can find it. Our isolation is compounded when we feel left out, labeled as ‘negative’ (when we just need to vent)…. think of a pressure cooker or boiler needing that valve to release some of that pressure so it does not explode. We need to be the ones to say what we ‘can and cannot do’. Please do not say, ‘Oh, well, you should not be babysitting/ going there/ doing that, etc because of your fibro’. We know what we are capable of and we are our best guides for what is best for us. I feel so alone and isolated more than anyone would know. So give it up and be aware! Take a stand and become informed! You never know when someone you love or worse could end up with a chronic pain disorder. Happy Mothers Day to Moms and to my fellow travelers down this long, grueling and lonely road, Happy Fibromyalgia Awareness Day, 2013! Godspeed to each and everyone of you!  I now implore you; BEG YOU to watch this short ( like 5 minute video), all of it, please. If you do nothing else for me or anyone in your life you may know now or sometime in the future that suffers from Fibromyalgia and/ or Chronic Fatigue Immune Deficiency Syndrome (I suffer from both, to be technical here, something I am not sure I have ever clarified). The singer is quite ‘pitchy’, but it does not matter for this song had me crying within two minutes flat. I don’t mean just a few tears, I mean that deep down sobbing kind of crying that comes from the gut. My nose was running and my face was as wet as if I was in the shower, but I was motionless. My feelings, thoughts, words were captured by someone else! No, this singer isn’t going to be signed on for the next contract at MGM or RCA, but what this song did for me was more powerful than anything Beyonce , Pink and Adele combined could do! Please watch, you will see why! Though the video was made for Fibromyalgia Awareness Day, 2010, it does not matter. Little to nothing has changed since then. Watch and be part of what we live for a few minutes:

http://www.youtube.com/watch?v=1VAB1FI4CpY

Here is one more I found later….. it is also SO worth the watch!  http://www.youtube.com/watch?v=StXhLLiC63k

Until next time, K.

Most people think Fibromyalgia/ Chronic Fatigue Syndrome is just pain and just severe tiredness. That is so far from the truth as fibro / CFS is so much more than pain and fatigue. These two symptoms are but a very small part of these conditions. So just what is this….. this relentless force which runs the lives of people with Fibromyalgia and Chronic Fatigue Syndrome?

• PAIN:Obviously pain is the number one symptom of fibromyalgia. Pain can be in certain areas, or is (usually) widespread. Nonetheless, where there is fibro, there is pain. It is not the only symptom of fibromyalgia. It is just the beginning.
• IRRITABLE BOWEL SYNDROME: IBS has to be the most frustrating of the side effects of fibro. To put it in a delicate way, many of us have to ‘manually steer’ our guts. We load up on Imodium when things are going too well and get the softeners going when things get backed up. For me, these days, rarely do things go smoothly on ‘their own’. Now I am not trying to be gross or give TMI, however, this is the reality of things and if I am going to be open and honest, I feel I would be doing a great disservice to leave this out.
• CHRONIC SORE THROAT / HOARSENESS: While my throat is not sore all the time, nothing screams “flare” like a scratchy throat! I do get these often….. especially when I am run down. To add to that, I seem to have an eternal hoarse voice and from a girl that not only has never smoked a day in her life but also has a severe nicotine allergy, I cannot be accused of ‘lighting up’. I don’t and couldn’t even if I wanted to partake in that deadly habit. No, it is the fibro and it is why I had to stop singing. You will find me saying ‘Fibro took ‘this’, ‘this’ and ‘this’ from me’…. one of them being my singing. Singing…. whether it being in choir in church or community theater was a passion. My passions have shifted because they had to, in part!
• PARESTHESIA:  a sensation of tickling, tingling, burning, pricking, or numbness of a person’s skin……also known as the feeling of “pins and needles” or of a limb “falling asleep” is another oh so ‘fun’ effect of fibro. My hands are in constant 24/7 ‘pins and needles’ which is also aggravated by the (tangible) severe stenosis in my neck. The two sort of collide like a great, sticky mess of a train wreck.
• PAINFUL / SWOLLEN LYMPH NODES: Again, this screams, FLARE! If my lymph nodes are doing anything funky, I know I am pushing too hard and am going into flare mode or getting sick. My lymph nodes and throat (getting sore) are my best indicators of when I am heading for a flare.
• THYROID ISSUES: (Theory Alert!…. remember, I am collecting theories for a later post). About the thyroid. I do not know why, but most every single person I know that has fibro also has issues with their thyroid. Now this may be a chicken/egg scenario, I do not know. Nonetheless, I do know that the thyroid seems to be a common denominator in fibro issues. 
•  SLEEP DISORDER: I am typing this at 5 20 AM and have been up since 3 AM. Last night my husband came in from his 2nd job and found me sitting up on the couch with my uneaten dinner on my lap, sound asleep. A few nights ago, I fell asleep on the couch at 8 PM and had (broken) sleep until 8 AM the next morning, and some nights I get 2 hours sleep. Some nights I get no sleep. I nap most days….. sometimes I nap an hour, other times I have napped up to 4 hours. There is nothing normal or regular about the way or places I sleep. When I do sleep in bed from a somewhat normal time, I sleep just like a baby….. up every two hours. As I stated in my “Day In A Life” post, it is very difficult to pin point a beginning to my day as  it sort of just loops round and round like Pink Floyd’s, “The Wall” CD. And then, to top it off, there is the recurring nightmare. To say my sleep issues mirror every other fibro patients would be totally wrong. All the same, the one thing most of us share is we do have challenges related to getting normal and uninterrupted sleep.

•  CHRONIC HEADACHES: This is by far one of the most common and shared complaints of fibro sufferers. Headaches in general are a common symptom in the society we live in and have different causes from hormones, stress, foods, sinus issues, etc. The thing about headaches with fibro is that the person is already in a substantial amount of discomfort. In many cases the fibro patient gets migraines and most everyone knows a migraine will take you ‘down’ in no time flat. Topomax is a good migraine prevention medication and Maxalt or Imitrex are good migraine meds once the headache starts. Maxalt works best for me and contrary to what some choose to believe, these meds are not pain meds, but rather go directly to the constricted blood vessels and cause them to open up.
• DEPRESSION / ANXIETY: If you hurt all the time, wouldn’t you be down? If you were judged, ridiculed and told your illness was non-existent at times, wouldn’t you feel pretty sad? If your life was run by a force so deep…. so powerful….. so unknown yet so volatile, wouldn’t you be anxious? Now add the chemicals in your brain being a bit off kilter because the chemical called serotonin was not quite being in sequence. Most people with fibromyalgia suffer from clinical depression. That is one reason Savella (an anti-depressant) has been approved by the FDA as one of the first drugs besides Lyrica to be used as a treatment for the treatment of fibromyalgia.
• NAUSEA: This is one of my least favorite side effects of fibro. Being post RNY also, I have ‘double whammy’ when it comes to my stomach and therefore always have anti-nausea medication nearby. I am not good when it comes to nausea and you can count me out in most things if I get an upset tummy so this is one area I have to be very careful about. For those of us with fibro, it is like dancing on hot coals….. especially those of us that have IBS
• HEAT / COLD INTOLERANCE / PHOTOSENSITIVITY / SENSITIVITY/ TINNITUS/ CHILLS: And so much more can be grouped into ‘Sensory Overload’ ….. which I of course did an entire Blog Post on a few posts ago. Sensory Overload is just that…. everything from taste, smell, touch, sight, feel…. everything is amplified, enhanced and heightened to uncomfortable levels. Cinnamon is nice, but not if it gives you a headache. Sugar tastes good until it makes you sick. Fur feels good unless there are burrs in it that stick you. Daylight is glorious unless the light is so bright it gives you a headache or makes you just feel ill. You will always find me wearing sunglasses…. even on the cloudiest of days. Nothing is good in extreme and with progressive fibro, sensory overload is paramount and it is one of the most frustrating of symptoms. You have super-human senses with the energy of a cell phone with 1/2 a bar of coverage.

There are many more side effects I could cover…. tachycardia, restless leg syndrome (I do not have that, but many do), shortness of breath (made worse by asthma in my case), vision problems, disequilibrium (I am the clumsiest person you will ever meet!), swelling (Lacex is my friend!), acid reflux, weight gain (too depressing to even talk about) 🙁 , light-headedness, hypoglycemia, difficulty swallowing (which can be quite alarming!!!!!), and anything / everything else you could imagine. Fibromyalgia is a cruel, evil, ugly …. pardon my language here, but there just is no other word….. bitch. She has no mercy and the saddest part of all? The stigma we carry by others. I have mentioned before how I was so harshly pre-judged a few years ago because my stomach….. getting ready for a trip abroad. Not too long after that, I had an intestinal perforation. I almost died! Because of my very limited ability to eat and severe sensory overload, I was ….. well, scared! I was going into the unknown, across the ocean. Someone decided…. based on that….. never taking the severity of my illness (even in the future knowing about my serious surgery, etc) into consideration. I never asked for special favors and anything anyone did for me was their decision and their decision alone and they were told with very sincere appreciation how grateful we were that they went to any trouble…. though not necessary. The point is, this is a perfect example of how one person used and still, to this day, uses fibro to judge me. Other ways? Being left out and not included because people do not think I can ‘do this’ or ‘do that’. As I have posted, I will be extremely honest. If I am not up to doing something, I will be the first person to say so! These ‘side effects’ are just as soul-crushing as anything physical. Remember, we with fibro / CFS…. we want our life to be as normal as possible. I enjoy ‘doing’ for others. Or trying to anyway…. sometimes that can backfire one me when I try…. but my heart is always in the right place. 🙁  So call that loved one in your life today who is suffering and invite them for lunch , tea, shopping, etc! Give a hug to the person in your life with chronic pain! We want to live, love and give too………. just as much as everyone else!  And remember, Fibromyalgia Awareness Day is coming up on May 12, 2013! Do something….. anything…. no matter how small; a text, a card, a call, even a short e mail to the fibro friend in your life on May 12th just to let them know you care! 🙂 Until next time, K.

http://www.youtube.com/watch?v=4Bl-pLG7_5E              

“Woke up, fell out of bed
Dragged a comb across my head
Found my way downstairs and drank a cup
And looking up, I noticed I was late
Found my coat and grabbed my hat
Made the bus in seconds flat” 
Most people can relate to the song. Even though it is decades old by one of the greatest rock bands ever, even in the 1960’s, people were pushing the envelope of the alarm clock, rushing about in the morning to get to work and punching that time clock to earn their wage. Most, like the rest of us, just wanted to grab a bit of happiness along the way. People with chronic pain and fatigue are no different. The biggest difference between us and them is everything; from rise to sleep takes tremendous effort. Things that most people do on autopilot, for many of us with chronic pain and relentless fatigue fight battles that would put Godzilla in a fetal position. So I decided to let you in on a day in the life of a person with chronic pain and chronic fatigue. I will present two scenarios; the tolerable day (I will not give the golden ‘good’ day, I only get about 5-7 good days a year…. they are precious, rare gems) and bad days which I get anywhere from 2-5 bad days a week depending on whether I am in a fibro-flare or not. I was in a horrible flare last week, for instance, so everyday was  pretty bad. This week seems to be starting on the same note.

It is difficult to even know where to begin ‘my day’ because I am usually so racked with unstable sleep patterns….. bouts of terrible insomnia followed by days of 3 and 4 hour naps we fibro patients label ‘crash and burns’ that like Pink Floyds  album “The Wall”…. it has no beginning and end….. it is just loops. Nonetheless, there has to be a starting point. Since I have been getting to bed at some point in the night/morning for at least a few hours (of bed sleep)… on a regular basis for the last several weeks….. I will start with getting up in the morning and go from there. I will describe a pain level 7 day…. tolerable and level 81/2-10 day which is bad. I usually am about 50/50.  So here it is ….. a day in the life.

• RISE AND SHINE:
  Getting up for me is a process. I don’t just ‘get up’ or ‘hop out of bed’. Morning stiffness is paramount with most progressive fibro patients and probably one of my top pain issues. For me it usually goes one of two ways: on a tolerable day I begin by removing my cat from me as he loves to sleep nuzzled next to or on my legs. It is ok, I already hurt so bad that having him nuzzle next to me is actually comforting. When I am ready to get out of bed I assess my pain level and begin with a slight stretch in bed. If I am at a tolerable 7 I can usually roll over and gently push myself to my feet. Once I do this, for the next 10-15 minutes I hobble about like an eighty year old would (sometimes using my cane depending on how steady on my feet I feel). Imagine walking bare-footed over rocks. On a bad pain level 10 day, I generally have to roll down, knees on the floor (being Catholic gave me years of practice for this) and get in the kneel position. Once I am in the kneel position I stay for a few seconds to get my bearings and slowly push myself to my feet and am hunched over like a woman of 100 years old. Many of these days, I just have to call Paul to come help me out of bed. If it is that bad, I literally cannot get out of bed without help. And that is very frightening. Now, insert a slight limp. It is documented on numerous medical records that I walk with a gait (limp) and I never knew this until Paul confirmed it

• MY DAY: Once up, I hobble to make coffee and get my hard working husband off to work. I will say, however, if I am having a bad patch… pain level 9-10…. he will get his own breakfast and make his own lunch. He is amazing with my illness…. the most amazing person in my life. Many of the people in my life do not even acknowledge its existence. While I certainly am not a drama queen and never complain/ vent to anyone except Paul (who knows I am just venting) and to my friends in pain on Face Book (for which we have closed groups for the very purpose of having a safe place to vent), it would be nice to be acknowledged once in a while that I am not normal; I am handicapped and even the most simple things such as going to church (which I have missed for weeks) is a devastating absence in my life. While people telling me to watch the sermon online is appreciated, I do not think people understand…. I miss the fellowship, the music, the laying of hands, the praise…… just being with other people who care! A box with the preacher is all fine and good, but nothing takes the place of the fellowship. Nothing can stand in place of that human touch and compassion.

• ROUTINE:
  Days go two ways: Staying home and going out. When I stay home I try to tackle as many chores as possible; dishes, laundry, tidying the house and sometimes a bit of ironing. On a tolerable day, I am doing good to keep the laundry topped off…. you would be amazed at how much laundry just two people generate. I do my best to keep the kitchen clean and cook dinner. I always say, if I can keep the laundry up, keep the kitchen clean and cook a simple dinner, I am proud of those accomplishments. Many people with the pain level I carry would be bedridden…. and bear in mind, I am on medication and still at this pain level (only below a level 7 less than one week a year). On a bad day, the laundry can keep and Paul will cook dinner. Now I make it a rule, the TV does not come on until my one daily guilty pleasure, “General Hospital” and then it is turned off again. I may be disabled of body, but I refuse to let my mind turn into a muddled wasteland of daytime television. I surf on the computer….. going on Face Book, check the local news, Pinterest, etc. Notwithstanding, I require myself to have focus and even if my energy is down (which a lot of the time it is), I will turn to a direction I can go without risking further pain or physical fatigue; One of two of my top passions, writing. That is why this blog post is here…. as I often say, if I can just reach or help one person a day with fibromyalgia or help one person understand it better, I have made a difference. I would love to become published someday, so I do take the advice of the published authors I know: write everyday; even if it is just 15 minutes. However, if I do not become a paid, published author in my lifetime, I love writing and fibromyalgia education is my mission! So a tolerable day: staying in and doing as many chores as I can manage, getting some writing in and cooking dinner. If I have a Doctor appointment or errands, they are carefully planned, and the only thing I do that day. Some days I get two or three things accomplished and for me, that is a successful day. For most people, that is nothing…. just a start…. a couple checks off a list. For me, that is a triumph. I think the best way to put it is this: Every thing that a person who does not suffer from chronic pain does…. from making coffee to doing dishes; from going to the store for a few items to going to the craft store to pick up scrapbook tape; from simply doing a load of laundry to just tidying up a bit to even going to work, something my Doctor…. along with the backing of each of my specialists determined was best for me… disabled me out of three years ago (and I am still fighting to get my benefits)….. every single thing with the exception of breathing takes double to triple the effort that it would for a normal person. Also, it is very important, on most days that I get some sort of a nap…. even if it is just for an hour. If I do not nap and put off naps day after day, I will crash and burn and sleep 12-16 hours straight.        There is nothing in this world that is simple for me. Nothing. Also bear in mind: besides pain and fatigue, I deal with severe IBS, brain fog, chronic migraines, chronic nausea, depression, anxiety, sensory overload and numerous other (fibromyalgia) side effects. I also have a laundry list of tangible issues with my neck. My body is …. well, pretty much a train wreck. Towards the end of last week my gut was in a complete tailspin with my IBS being out of control. I took 24 Imodium and an entire bottle of Kaopectate in a three day period. As so often happens, we had to miss an event that we were looking forward to…. the annual kite festival. It is a festival put on once a year that is what it says…. a bunch of people flying kites of all shapes and sizes. However, it is free, it is in spring with the nice mild weather and it is just the right length of time to get out and enjoy the sights, sounds and feel of the season without over exerting myself. Yet, as so often happens, my body dictated to me: no going anywhere until I get this gut calmed down.  I say this not to get any sympathy…. I do not want sympathy….. I say this to educate people what life with fibromyalgia can entail.  Suicide rates among people with chronic pain is high and back when Dr. Kevorkian was in business he assisted in the deaths of several women with fibromyalgia. According to thirdage.com, “The suicide rate for people with chronic pain conditions is two to three times higher than the population as a whole.”

  “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” ~ Mary Radmacher

• ERRANDS / SHOPPING/ APPOINTMENTS: Errands, shopping and Doctor appointments pose their own challenge. If I am in a flare….. like I am as I write this…… I will do the bare minimum. A few days ago serves as a good example. I had a 15 minute Doctor appointment in which Paul accompanied me. I then had to run to the store to pick up a few items. Dinner was leftovers so it just needed re-heating. I was shattered and fell asleep on the couch shortly after 8PM. I slept the entire night (with my normal waking every 1-2 hours as I always do). In total, I slept about 12 hours (broken sleep). For me that is a crash and burn. My body ‘turns off’ and forces itself to re-boot. Though I felt a bit better rested the next day, I still felt like I was the pinata at the receiving end of a gaggle of five year old children. The one I feel for most is Paul. When I have these flares and crash and burn, he has a wife that is out cold by 8 PM. That is not a fun evening after a long day at work. When I go to the store I often have a difficult time finding a disabled space that is available. Once I have done my shopping, I leave the non perishable, heavy items for Paul to bring up. Struggle; each and every little minute detail of my day can be a struggle. Paul always assists me with big shopping trips.

•  NIGHT: Nights are bittersweet. After spending a day with only the cats to talk to or doing everything from cooking to laundry…. from shopping to a simple Doctor appointment as if there were a 100 lb ball chained to my ankle, I so look forward to my wonderful husband coming home. If the day is at a tolerable level, I have been able to prepare dinner. We have our dinner and, like most people, settle in for a night to watch some of our favorite TV shows. On the flip side, nights can be my worst enemy. Night time also means bedtime and for me I do not get up and go to bed like normal people. If I am able to fall asleep… and I say if because I am presenting this scenario from the standpoint of a tolerable pain level day in which *each and every night* Paul rubs my shoulders, arms and feet (reflexology) to help me relax. I often say, he is my favorite medication. So 99.9% of the time I fall asleep on the couch. It is what it is and I am trying to get to a point where I can get up, go to bed and fall asleep in bed. For me many of these goals are baby steps. In any event, the first time I fall asleep at night is just the beginning of my night 90% of the time.

If I am able to remain in bed, I wake up every one to two hours, without fail. If you have ever been to a very hot place…. imagine this place. Not just a hot place, I mean HOT…. as HOT as it gets. I am from Bakersfield, California and the hottest temperature I can recall feeling is 117 degrees F. however, after 105 degrees F. it all feels the same. When the sun settles in this really hot place the earth still radiates with the heat of the day. It is kind of a throb…. a sort of rhythm one can feel. That is what it is like for someone with fibromyalgia laying down at days end; our body throbs, bump, bump, bump with pain. It radiates outward to the point you are certain it can be felt by your spouse/partner. Many times I am up and down. If you have had a surgery or been in pain or had a bad cold, you know what it is like to be unable to sleep properly because of pain/discomfort. For us, this is nearly an every night occurrence.

If I have a bad headache or neck pain is flaring for any reason, I usually ‘sleep’ sitting up with a neck support pillow. This type of sleep is more of a twilight sleep, but any rest is better than no rest. In the case of insomnia….. where pain is so intense I am unable to sleep at all…… this is the worst night of all. Nights are the longest and loneliest when pain levels are high and sleep is nowhere to be found. I must remain quiet as not to disturb my husband…. a man working two jobs, without complaint. If it is the weekend I will generally be able to find something on television that is interesting but if it is during the week I do not even bother. I surf the net, write…. if I am feeling able to retain anything I read, I will go ahead and read whether online or a book. Usually, however, brain fog is high when I am tired and unable to sleep because of pain so I don’t even bother trying to read…. knowing anything I read will all be lost as soon as the words are read.

MANY TIMES WHEN OVERWHELMED WITH INSOMNIA, A PERSON IN PAIN WILL STAY UP AND SURF THE WEB OR WATCH TV. MANY TIMES YOUR LOVED ONES WILL FIND YOU ASLEEP OVER THE COMPUTER OR IN OTHER INTERESTING POSITIONS

The other thing that plagues me….. and this is not a fibro thing but does add difficulty to my sleeping problem……… is my recurring nightmare. This is very personal to me and quite dark. All the same, I feel it is necessary to mention it to give the reader an over-all view of my ‘day’. It generally occurs about 5 AM. I have tried to hide from it, miss it, lose it, trick it and everything else I can think of. It always finds me. If I pull an ‘all-nighter’ with pain induced insomnia, it finds me If I am able to get a nap or the next night, and it is generally more creepy and a lot more disturbing. So trying to trick this nightmare or displace it is futile. I do not know when or if this nightmare will cease so for now, it is just something I must accept.

TRYING TO TRICK MY RECURRING NIGHTMARE IS FUTILE AND ACTUALLY MORE TRAUMATIC. THE BEST THING TO DO IS LET IT RUN ITS EVERY 24 HOUR CYCLE

Then the morning comes and my ‘process’ of getting up/ crawling to an upright position and it starts all over again.

I cannot speak for any other or even a percentage of other fibro patients. We do, nonetheless, have many things in common…. morning stiffness, pain, fatigue, sensory overload, insomnia and so much more. So I think looking at my life as a disabled person with advanced fibromyalgia, Chronic Fatigue Syndrome, a load of ‘tangible’ issues with my neck and a host of issues like IBS, migraines, insomnia, etc related to the fibro, I think a day in my life is a fair overview of a day in the life of someone with fibro. As bad as it all sounds, I am not miserable and full of woe. Sure, I wish I did not have this monster to deal with. I would love to have the energy that matches my soul and passion, but it is the hand I was dealt. I have an amazing husband, beautiful children, a perfect Granddaughter who is the center of my universe and a Grandson coming in September who is the co-center of my universe! I have an amazing Uncle and though he is in California, he has served to be a tremendous support and second Father to me. I am not an unhappy person. Frustrated a lot of the time? Yes. Unhappy? No.

WHAT WE WANT: We want to be treated like anyone else you know. We do not want you to assume we ‘cannot go’ somewhere, ‘cannot babysit’, etc because we are in pain. A lot of time doing the very things people think was ‘cannot do’ or will ‘aggravate us’ are the very things that deflect our attention away from the overwhelming things that are happening in our body. We know what we can and cannot do…. let us be the judge of whether we are ‘up to doing something’…. we will let you know if it is too much for us. I often feel very forgotten and left out because other people do not ask me to go places/ do things/ help them out because of my illness. This is so far from what I want. We want our illness acknowledged and one of the biggest things someone can do to us is act like fibro is ‘over – exaggerated’ or ‘in our head’, etc. That is hurtful and so wrong. Trust me, someday the very people thinking/ saying/ acting out these things may be the very people who understand the very best.

WHAT WE DO NOT WANT: We do not want to be left out, forgotten and treated like freaks. Believe me, I already feel like enough of a freak…. with this monster that even my husband upon seeing the number it has done on my gut the last several days, “You are such a colorful, alive person…. I HATE what this thing does to you. I hate it… it just sucks the life out of you.” And it does. Every Medical Doctor worth seeing now will tell you fibromyalgia is very real. They may not fully understand it…. and (remember, I said I am gathering theories here… so take note, another theory for a later post)…. it is being shifted to a neurological disorder now over a muscular disorder. So the nicest thing you can do for the fibro patient in your life? Love them and include them…. unconditionally. I am speaking for myself here, but I am sure other fibro patients will agree….. I feel all the time that I am living life from the sidelines. I feel so very left out of so very many things. It would be nice to be included just once in a while in things with family and friends. I often feel like “FIBRO FREAK GIRL” because I am… well, a slave to this disorder. It is not my fault and I certainly did not ask for this hand I was dealt. If you ask us along, or to house sit, baby sit, dog sit or to help…… we with fibro will let you know if it is too much for us at that particular time. 

Those of us with fibromyalgia need to be included, acknowledged, accepted and LOVED……. not just tolerated.  Until next time, K.

******This post is dedicated to the memory of my Dad, Gary Coleman, 1940-2007. I now understand that though you made mistakes and I was upset about those mistakes for a while….. as a parent who has made my share of mistakes, I understand! We are parents, but we are people and as people, we are imperfect. You loved me and you also not only acknowledged my fibro, you but you cared about my health and pain! I also now understand that your pain and health really did prevent you in your last few years from coming to visit. It is OK! I understand now. And one thing is for sure, your dance on this earth was too short.

http://www.youtube.com/watch?v=gjZQyWG6z3o

Oh very young
What will you leave us this time?
You’re only dancing on this earth for a short while
Will you carry the words of love with you?
Will you ride the great white bird into heaven?
And though you want to last forever
You know you never will
You know you never will
And the goodbye makes the journey harder still

MY DADDY AND ME WHEN I WAS ABOUT TWO YEARS OLD. IF I COULD ONLY TURN BACK THE CLOCK, THE THINGS I WOULD DO SO DIFFERENTLY. MY DAD’S DANCE ON THIS EARTH WAS NOT NEARLY LONG ENOUGH, BUT WHAT AN IMPACT HE MADE! I STILL MISS YOU DAD, EVERY SINGLE DAY!

As I have gotten older, my skin has taken on more of an olive complexion like my Mother.  My Father, on the other hand, could snow blind a person if they stared at his long, flamingo like legs long enough. Now I did get the long flamingo legs and when I was a child though not as snow white fair, I was much more prone to getting sun burnt then I am now. Growing up in Southern California, with a once a year trip to Pismo Beach….. along with numerous weekend trips and occasional spring break getaways….. I got more than my fill of sun burns.

So what does a sunburn and fibromyalgia have in common? Sensory overload. The best way I can describe what sensory overload is like for a fibro patient is to say it is like your senses have a bad sunburn. First let me tell you, from personal experience, what hell it is going through life as….. my husband Paul puts it….. with ‘super human senses’ without any sort of boost in stamina or strength. In fact if anything just the opposite is true.It is like having Superman senses with the energy of a cell phone on that last single bar before it poops out on you.

The best way to describe sensory overload in a simple way is to say everything is amplified. Every sound, taste, temperature, texture, light, odor and even the smallest thing that is not as it should be…. something that would not be noticed by the average person….. can be overwhelming to someone with fibro because of this strange and recently noticed quirk of this condition.

• SOUNDS: Paul and I have a ritual each morning. Now Paul has  a small touch of TMJ so his jaw slightly clicks when he eats. Most people would not even begin to notice this slight click. But to me it is as if someone has a little ‘clicker’ right at my ear, with a mega-phone, and is clicking away at the rate someone can eat cereal. Then, of course, there is the crunch of the cereal.  So our ritual is (him knowing and respecting it is me and not him) that we get some music going if it is not already on. I can also hear the neighbors….. I could even hear the last one below us snore (though in all fairness Paul could too at times). The worst is the night. When the insomnia is in full speed, the silence of the night is so loud. There is no silence for me. My silence is like a loud, high pitched, buzzing that never goes away. Basically, my silence is a loud, shrilling form of tinnitus. http://en.wikipedia.org/wiki/Tinnitus . Some say silence is golden…. I say silence is hell. For those that have had a chance to see a harrier jet in person, you will know those babies are loud! Before leaving my home state of California, we used to frequent air shows …. love them! What a rush! I saw this beauty of a jet…. and heard it. YIKES! (It was also featured in the movie “True Lies” with Arnold Schwarzenegger). The harrier can land and take off (almost) like a helicopter. It needs almost no runway. If I had then, what I have now as far as sensory overload, I would have bolted. Now, seeing the harrier would be unbearable. The other thing is balloons. Or should I say popping balloons. Now I am rounding up theories here, so pay attention, because in a few months I am going to take these theories and make a post out of them. Also pay attention to this statement very closely: I have always hated popping balloons. More than that,  the tins you get with cinnamon rolls, pizza dough, etc that you unroll the paper and they “POP!”, I have always been scared witless of those and do not open them unless I have to. Champagne corks, firecrackers and even the 4th of July fireworks turn me into jello! My Dad used to tell me about the time I was a young child and they took me to the fireworks display at Bakersfield College. We had to leave shortly into it…… I could not take the loud popping of the fireworks.

• TASTE: Being from California where real Mexican food comes from, I love my ethnic cuisine. While I have never been a huge fan of overly spicy food, I was always one to like a bit of a kick to my food. Not anymore. Even the smallest amount of heat….. as in spicy heat….. ruins food for me. I just cannot take it. Foods that the average person would not consider spicy or maybe mild spicy, I consider three-alarm, off the charts spicy. Having to re-order food at eating establishments on more than one occasion (that the server has claimed are not spicy), I have learned to steer clear of anything that has the slightest description of even a hint of spice. I believe my taste buds are probably the most sensitive part of my body. Talk about sensory overload, there is just no adequate way to describe the way my taste buds react to food. Paul has become a big help in this department…… knowing if a dish would suit me or not. It was not always this way, but he has learned. He is almost as good at knowing what will suit me as I am. A good example is Totino’s pizza rolls….. the supreme flavor (with meat)…. they are too zesty for me. For most, they would not be hot at all, for me, I cannot take the seasoning.
• TEXTURES: As a kid growing up in sunny California, I went around bare footed nine months out of the year. Running with my friends on the 800 block of Woodrow Ave in the Oildale area of Bakersfield playing tag, riding bikes, playing hop-scotch,  double-dutch jump rope and hide-and-go-seek 90% of the time I was bare footed. I stepped on 100 degree pavement, stones, burrs in the grass and everything else one might imagine. It did not faze me. I was never overly picky about the texture of my clothing or coats and gloves. My Great-Aunt would knit me winter scarves, hats and gloves and they came in various widths and textures. There was never an issue with any of these warm delights. As an adult, the only thing I was opposed to was ‘itchy sweaters’ and was never a fan of silk. Other than that, I was never fussy….. at least until my fibro took such a bad turn. When my senses got turned up to full blast, it was as if the receptors in my skin could feel every fiber in the clothing I would wear. Every glove, scarf, shirt, pants, sleep garments, socks, sandals, etc. I can no longer go bare-footed. I must even wear flip flops in the house because of the carpet fibers. It is like clothing touching skin when it is sun-burnt…… only it is the nerve endings. So I guess one could say you have ‘sun-burnt nerve endings’.

•  SIGHT: “I’ve got sunshine on a cloudy day. When it’s cold outside, I’ve go the month of May…..”. Awwww…. I love that song; who doesn’t? It is, nonetheless, true for me. I have sunshine even on cloudy days. You will find me sporting my ‘Audrey Hepburn finest sunglasses’  most every day. Howbeit, it is not to look like a cool chick! No, it is because even in the dimmest of light my eyes are very sensitive to sunshine and all bright light. I also have issues with strobe lights, overbearing colors, etc.

• TEMPERATURE SENSITIVITY: This one speaks for itself. I cannot stand cold water. I do not get into the pool until we get our first good heat wave and the water temperature is well above 85 degrees Fahrenheit. Likewise extreme cold days as well as extreme hot, humid days absolutely shatter me. Growing up in the hot, dry desert of Bakersfield, I can bear 110 degrees at 10% humidity more than I can 85 degrees at 90% humidity any day! On the flip side cold is the absolute worst enemy of a fibro patient.

• ODORS: This is perhaps the most frustrating of all the senses that get ‘overloaded’….. especially with secondary conditions such as asthma and a severe nicotine allergy. For someone with such bad sinuses, I have the nose of a bloodhound. Bad odors can flatten me with nausea in seconds flat. I am often saying to Paul, “Do you smell_______?”. Many times he does not…. but some times he does. When we moved to town from living in the country, after my youngest daughter graduated from High School (I lived close to her Dad’s house to make it easy for her to go from house to house), we moved right above an elderly couple…. that had oxygen vented into their apartment…… and were virtual chain smokers. Because they had the oxygen vented into their apartment, they had to smoke on their balcony. They went in and out, in and out, in and out…. every 15-30 minutes from 6 AM until 10 PM at night. The management could not do anything about it because they were ‘free to smoke on their balcony’ and the man was extremely confrontational. They knew they were killing themselves (the ambulance came to get one or the other on more than one occasion the times we saw) but they did not care….. and the man said so! They loved their smokes and made no bones about it!  We were prisoners of our home the first year…. unable to open our window except for the one week they went on vacation. I was never so happy to see two people move. This issue, in part, actually caused someone to dislike me before they ever knew me. I won’t go into what happened or who the person was that decided they did not like me before they ever met me. I was, nonetheless, a victim of prejudgement. It also caused that person the loss of respect of myself as well as my husband….. something that says a lot. Having sensory overload makes you so vulnerable  physically, it opens you up to even more criticism than just having fibromyalgia alone does. One good way of putting it is: when you have all the crap going on involved with sensory overload; it is like you are a porcupine with your skin inside out!

Though each of the senses I described get overloaded, much of the time a fibro sufferer just feels like they are completely overwhelmed…. especially in a place where there is a lot of people, it is loud, there are a lot of bright lights or they are in a stressful/ nervous situation. It is much like that cliched part of every movie where the main character gets overwhelmed….. the music swells to a great dramatic suspense….. and the character bolts out of the room in heated anxiety! For a fibro sensory overload, that is exactly what a overload panic attack is like. You just cannot take it and you bolt. Since this is a recently ‘stumbled upon’ subject….. or should I say the elephant in the room that fibro patients are finally talking about (because we have enough stigmas with our condition as it is), the experts say removing yourself when you get overloaded is exactly the right thing to do! In fact to prevent overload, experts suggest patients that know they are going to a big event or situation that may cause overload adequately rest, mentally prepare and make sure they are ready to face whatever it is that may cause the overload. If there is a situation that you know will likely cause overload, the best course of action may be just to avoid it altogether.

Fibromyalgia comes with a bucket load of symptoms and annoyances. Though sensory overload is newly acknowledged, it has always been a part of the many struggles for the fibro patient. As if all the other difficulties of fibro, including the stigma attached are not enough, sensory overload is another obstacle to deal with. However, recognizing its existence, planning accordingly and removing yourself when things get overwhelming can help cope with this frustration. Until next time, K.

PHOTOGRAPH BY PAUL D. GLOVER: ALL RIGHTS RESERVED BY PAUL D. GLOVER PHOTOGRAPHY

Yes! “The Sensory Overload” AKA, “The Sunburned Senses Of Fibromyalgia” is coming soon! I am busy researching and preparing for this exciting, upcoming post. This particular subject is cutting edge and very new ground in the world of fibromyalgia. I am on a time crunch finishing my Certified Paranormal Investigation course and need to finish it in the next three days, so I am taking this opportunity to share a poem I wrote about two years ago. This poem is very close to my heart and is very personal…. and powerful.

PHOTOGRAPH BY PAUL D. GLOVER: ALL RIGHTS RESERVED BY PAUL D. GLOVER PHOTOGRAPHY

One of the most difficult things fibro patients can face is insomnia. Hopefully the words of this poem can tell the story in a way

The Early Morning Hours Of The Night

By: Kelli Coleman Glover

It’s so quiet in the early morning hours of the night
As I sit with my pain and worry in the dark, waiting for the light
They say stay positive and it will be alright
But they who say that, know not my plight
So I sit, in the early morning hours of the night; waiting, worrying, wondering; will everything be alright?

The smallest sounds are so amplified during these minutes of the night
The hum of a machine, the rhythmic breathing of another human being
Every small sound, made so big; every single worry set out before me
Every thought, every fear, every notion; nothing is made clear
In these early morning hours of the night, as I sit in the dark, waiting for the light
They say stay positive and it will be alright
But they who say this know not my plight
So I sit, in the early morning hours of the night: waiting, worrying, wondering; will everything be alright?

I do not apologize, for I have a right, to feel whether others think it is wrong or right
As I sit in the early morning hours of the night; waiting; worrying; wondering; will everything be alright?
They say stay positive and it will be alright
But they who say this know not my plight
Some judge harsh, for it is true, these that judge like this have never known true doom
They judge every word you say, every thing you do; never knowing you or the intention of your ways
They make themselves the victims, the ‘whoa is me’; they have never known real pain and I truly hope for them it continues to be
Do not judge my plight, for you haven’t a clue
You do not know what real pain is; but believe me, I do
In the early morning hours of the night
I sit and wait, will it be alright?
I walk humped over, the Doctor calls it a gait
It is noted on my files, at least it is official and not just hearsay
In the early morning hours of the night
It is so quiet, will it ever be alright?
I limp around in pain, as quiet as can be, waiting for the darkest hour
For the dawn follows closely
The light of day and I can move about
I will not be alone, but my pain will still shout! Anger! Throb! Burn! Knotted up! Pound! Pound!

In the early morning hours of the night
When it hurts so badly, I cannot bring slumber to my eyes
I sit in the room, all alone in my pain
While others sleep, oblivious to my strain
Do they not know the horror of my life
The horror that I face, night after night
For sleep rarely comes but pain comes always
Will I ever sleep again? Oh wait, yes, I will sleep when I am dead

In the early morning hours of the night.
I sit alone, my pain and I
I know there are others, their stories like mine
They do not judge me, they know my plight
In the early morning hours of the night
As the tears roll down, I type and type.
Chronic pain is a torture, horrendous to bare
Remember next time you meet someone, somewhere
who is at mercy to this cross that we bear
In the early morning hours of night
I sit alone; alone with my plight’
Pain is strong, the night is long
No end in sight, so I will try to be strong.

Until next time: K.

PHOTOGRAPH BY: PAUL D. GLOVER : ALL RIGHTS RESERVED BY PAUL D. GLOVER PHOTOGRAPHY

Nearly a decade ago, while my husband and I were engaged, he was sent an e mail saying I would be costly and run up endless dollars of Doctors bills because of all my health challenges. He was warned  I was an ‘expensive undertaking’ because I always had appointments and was on a number of drugs. Of course my drugs are really medications prescribed to me by my various Doctors of Medicine. They are needed for my body to properly function and stay as healthy and pain free as possible. Would the author of the e-mail rather have me wither away and die? Perhaps. However, I have no intention of going anywhere and the ‘who and reason’ behind that very hateful e-mail are not important. As a writer with the highest integrity, it is not relevant to say who wrote my husband that e-mail or how I knew the person who wrote it. Who it was is of no importance….. how it relates to this post is what matters.

My husband loves me. I sometimes do not understand why. I am costly. I am high maintenance…. not in material  possessions, still, in Doctors bills, scans, surgeries both past and pending and medications. My husband entered in, fully aware. What the person that wrote my husband that e-mail did not step ‘outside the box’ and realize was, the vows say, ‘in sickness and in health’

.

Fast forward to just a few weeks ago. Someone who is now, sadly, a former friend, insisted that one of my examples from my last post…..of people that tell me they have pain but have no choice but to  ‘push through it’….. was referring to her? Excuse me? I assured over and over that  this simply was not the case. I let her know I had twenty years of experience to draw on and of all the people I have dealt with over twenty years, she did not once enter my mind. A lot of other things were said….. things I will not mention here because as I told her, I am a writer with probity. I am also a person with integrity.  I asked for an example but she refused until finally, upon several requests,  she pointed to a vague paragraph (above mentioned). I tried and tried to explain to her, even swearing to the Lord above that did not once creep into my mind (really, why did it have to be about her?…. it simply was not ). I crossed a point where it did not matter if she knew the ‘truth’ or not. I told her still, she was simply not the person referenced and in fact there was not one certain person in mind but rather a number of people. She was not one of them. It was a lost cause and honestly I think a cop out.  The bottom line is this: for us….. people with fibro and chronic pain…… friends either stick by our side through thick and thin (like our wedding vows in sickness and in health), or they scatter like mice on a sinking ship. She has a lot of stress in her life and I understand and respect that, but she stated that the sadness of the subject matter was more than she could take. I do not accept that. Again….. if a friend is to get, God forbid, a terrible disease such as cancer, is it just too much sadness? Unfortunately, in many cases, yes. I have seen this happen too. I have seen people left high and dry by friends and even family with every condition or disease ranging from fibromyalgia to something as serious as cancer. When I was twelve years old, I recall a young man who was a neighbor of mine getting terminal cancer. His parents lived across the street from me and his baby sister and I were good friends. He moved back in with his parents his last few months on earth. He was only in his early twenties. As sad as this is, his wife left him when she found out he was dying. Some people cannot take watching others hurt. While I certainly try to stay as upbeat, informative and as much of a crusader as possible, the truth is not always positive and happy. The truth, at times, hurts. The truth, at times, is painful, soul-crushing and lonely. I am here to try to maintain a balance……. keep things upbeat but also let my sisters and brothers in pain know: it is OK to be down and feel alone when you hurt twenty four hours a day, seven days a week. My sisters and brothers in pain: you are not alone!

Fibromyalgia is a lonely condition. There is a group on Facebook Called, “Stop Whining Fibromyalgia is A Joke”…. I hate even giving it space here, but please report this group as often as you can as “Should not be on Facebook” followed by, “Hate speech against a group with a disability”. If you need to, join, “Close Down Stop Whining Fibromyalgia Is A Joke”  on Facebook……. which has more followers than the troll page it is trying to get stopped. Free speech is one thing; hate speech is another. For that is exactly what it is. Do you want to know what the owner really is? He is a hypo-therapist trying to get clients! He is going to hypnotize that pain away. And do not try and reason with the man or he will call you ‘dumb ass’ and ‘moron’ and block you ….. for a day. So mature! Would really trust him putting me in an altered state of consciousness? I don’t think so! My husband Paul…. who is extremely refined and restrained tried writing a very mature and educated post. The post got deleted and Paul got ‘banned’. He simply ‘questioned’ the way he approached getting business and ‘poof’ he was gone.  There is no reasoning with hateful trolls. Anyone that would be so cruel does not deserve any sort of credibility. I have no problem with anyone trying to promote a business. Be that as it may, why would someone try and and promote it from such a hateful stance? Imagine if you inserted “Stop Whining Cancer is a Joke” or  “Stop Whining Autism is a Joke”. Do I have your attention? I hope so because both of those issues fall very close to my heart and I would take great issue if that same person left fibro out of it and did the same thing with either one of those subjects. Somehow,  because it is fibromyalgia, it gets swept under the rug. We are the ‘negative’ ones. No, we are warriors. Yet so many of us with this condition are left lonely…. feeling as if ‘we have done something wrong‘. Some of the bravest and strongest people I know are people with chronic pain. I have a friend in Canada that I will call “E”. “E” is amazing! She has made hero in my book…. a very difficult thing to achieve. “E” is taking on the Canadian Government! Because I respect her privacy, I will not elaborate, but I just have to say she is beautiful, smart, driven and one of the strongest people I know. She is not a whiner or a ‘negative nellie’ in any way, shape or form! Chronic pain survivors are strong…. not weak and ‘sad’.

My friends with fibromyalgia, you have done nothing wrong! Remember, depression is one of the most common (of many) side-effects of fibro so already you have one thing stacked against you. Also bear in mind, approximately 5 million Americans ages 18 and older have this condition so as alone as we can feel, we are not alone! Reach out to others. I am a member of various groups via Facebook and, as I have mentioned in the past, have made numerous friends all over the world! I would not trade these friendships and the bonds I have formed for anything. I cannot count the times I have had someone to ‘catch me’ at 2 AM when I am unable to sleep because of pain.  As sad as this sounds, people that do not have fibro or do not have a loved one with fibro in many cases maintain the attitude of that man who runs that Facebook page, ‘you hurt, so just shut up and live with it!’. I have said this many times: Fibromyalgia is 50% pain and 50% so much more. It is not just pain. If it were just pain, I think I could almost deal with it! However, I am not saying people that do not have fibro or have someone close to them with chronic pain are incapable of being sensitive to the walk we walk. I have met many sympathetic to our plight and many who have stopped to talk to me for several minutes to soak in as much information as they can. “What is that? I have heard of that?” to be followed by, “You poor thing” or “Bless your heart” to which I reply, “Thank you! But don’t feel bad for me. I have accepted this. Now I just try to educate and raise awareness. I also hold out hope for a cure or a really good treatment.”

I cannot let this go by without mentioning a few who have been with me through the long run. “N” who I would classify as my best girl friend. We are polar opposite when it comes to politics, but, we respect each others rights to have our own opinions. Isn’t that why we have a Constitution and live in the Land of the Free? We have these rights so we can each have an opinion. “N” and I respect this about each other and that is why our friendship works so beautifully. The same can be said for “S” a friend literally since age three and separated by 2,500 miles. We have many beliefs (such as religion) that are spot on, but politically are polar opposite. We have always steered clear of this subject. Both of these friends have stood by my side……. in sickness, health and everything in between. That is the foundation for which a real, true friendship is built on. If it is ‘too sad’  then there was never a friendship at all. If I am too costly because of my health as was stated in the e mails to my husband a decade ago, why not just execute me? If sick people are considered, to this person, to be such a burden, well maybe movies about getting rid of  people that are no longer considered ‘valuable’ or are over a certain age are a little too close to home. Two examples would be “Logans Run”  http://en.wikipedia.org/wiki/Logan%27s_Run and “Soylent Green” http://en.wikipedia.org/wiki/Soylent_Green

The bottom line is simple. I am who I am. I am far from perfect but I have a good heart. I am passionate about writing and I am passionate about fibromyalgia awareness. I make good use of this hand I have been dealt.  This beast has robbed me of my quality of life. I am going to do the best I can do to be as productive as I can within the very limited confines that my body allows. Rather than zoning out in the wasteland of daytime TV, I choose to keep my mind…… muddled in brain-fog…… as active as possible. I choose to educate, inform and comfort. My goal is not to be a ‘downer’ or start a petty argument about something that someone insists is ‘about them’ when it just simply is not the case. Not to burst anyone’s proverbial bubble, but the people I am concerned with when I write about life with fibromyalgia are people with fibromyalgia and their loved ones. I am also here to educated anyone who in simply interested in this never-ending, never-ceasing cycle of pain, emotional upheaval and the overall assault it plays on ones body. I know I am helping people. That is what is important. For the people that insist life has to be a constant ‘positive party‘, I make no apologies, because I am writing about the reality that is fibromyalgia.  Additionally, life is not always ‘happy, happy!‘. You do not have to like my writing. I will, on the other hand, not have my integrity questioned. My integrity is front and center with every word I type. Most of all, my Lord and Savior Jesus Christ is with me every step of the way. For that, I am truly blessed. Until next time, K.

A perfect song…. for all the lonely people….. may your days be full of comfort ,friendship and most of all……unconditional acceptance!

http://www.youtube.com/watch?v=k9Itt02QOO0

Just a few days after writing my post explaining that there is, indeed, an art to having fibromyalgia, I found this picture:

Coincidence? Fate? Kismet? All of those put together? Perhaps God led me to the picture. Either way, it validated the very concept I came up with on my own; you can refine the art to living with a painful, chronic and often disabling condition. When mastering any art, you will have trial and error and a lot of experimentation. People will criticize. Forget people that have nothing better to do than trash talk those whose walk they will hopefully never have to experience. I do hope and pray, nonetheless, these mean, heartless people learn the art of empathy and compassion. To read “The Art Of Fibromyalgia”…. the post I am referring to….. just continue reading. Until next time. K.

I have written about the balancing act that comes with fibromyalgia and chronic pain. There is also an art to fibromyalgia. The great composers such as Bach, Beethoven, Mozart, Handel and Chopin all had one thing in common; their never-ending quest for excellence and perfection. The great impressionists also had the same qualities. Dot by dot, stroke by stroke, each painting was not a half baked undertaking. All their great works were completed after much preparation, study, trial and error, experimentation and ability to learn what works and what does not work. As ‘outside the box’ as it sounds, there truly is an art to master living with fibromyalgia.

MY HUSBAND IS AN AMAZING ARTIST OF BLACK AND WHITE FILM PHOTOGRAPHY. HE STARTED OUT WITH A FILM CAMERA THAT WAS GIVEN TO HIM AND STUMBLED INTO THE WORLD OF BLACK AND WHITE. WHILE ALWAYS HAVING A ‘GIFT’, HIS TALENT HAS GOTTEN MORE AMAZING AS TIME GOES ON. ALL ARTIST ARE SIMILAR. THE MORE WE PRACTICE, THE BETTER WE MASTER OUR CRAFT. *****PHOTOGRAPH BY PAUL D. GLOVER

The biggest conquest for anyone with fibro is learning how to manage day to day pain. For every patient there is a different answer. You will see me write this many times: my pain is not your pain or ‘her’ pain or ‘his’ pain or the pain of the person that lives down the street from me.  My pain is not the same of the many people I talk to at the store. I am my fathers daughter! I can talk to anyone. I was in Wal Mart a few weeks ago looking for shampoo. I knew what I was looking for but it was like that book the kids and I used to have fun with, “Where’s Waldo?” Trying to find the “Hold and Lift” version of my brand along with the 500 other brands was about ready to make me scream. A very sweet, elderly lady next to me started talking to me. She asked me if I saw the shampoo she was looking for. We began a conversation that would last a good, full, five minutes.  Dad would be proud of his girl. We compared hair notes. I complained about my thick, unruly wavy locks. She complained about her straight, silky hair. I love straight, silky hair. My best friend in my childhood Tammy J.  had long, black, silky hair. I loved her hair. I have my mothers Mediterranean locks; thick and wavy. The lady told me that the very next week she was paying a lot of money to have what nature gave me, a permanent wave put in her hair.  I told the lady my husband would enjoy this conversation stating he quipped often about how ‘us women were never happy with our hair’. In the end her shampoo was two feet in front of her. She thanked me for the good conversation and laugh, I did so likewise and walked off with a smile. My hair is not her hair….. her hair is not mine and as much as I can try and ‘get’ why on earth she would want to have the very thing I fight….. wavy curl…… I am sure she was left that day trying to get why on earth I would want straight silky hair. The same is true for pain. No one will ever understand my pain and I will never understand the pain of another person. Empathize? Yes. Sympathize? Of course? Completely understand? Impossible.  Since 2009 I have been on the best ‘cocktail’ I have ever taken since starting treatment in 1996. It is not the golden ticket…. far from it. However, it fights my pain as well as anything and being that it is not an opiate, it does not leave me loopy. I like that a great deal!  My pain levels never get below a six. Ever. A six for me is a good day and I get one of those maybe three to five times a year. Out of 365 days, I get maybe 5 good days. 7-8 is tolerable and that is where I sit about 75% of the time. 8 1/2-  9 is bad and 10 is miserable. Bad and  miserable are the days that take the wind out of my sails. The art here is to not be labeled a complainer but rather a crusader. If I only make one person a day aware of fibromyalgia, I have achieved my goal.

When you hurt all the time there comes a time when you do need to vent. How do you master the art of venting without being labeled a whiner? In spite of a society that says “Push through it” or “No pain, no gain”, the same people that say these things are not in your body feeling your pain. If someone who is also hurting chooses to be a martyr, that is their choice. I have heard more than once, “I am hurting too, I just have to deal with it and go on.” If I could ‘deal with it and go on’ I would. I did for years. I worked ‘through it’ and ‘went on’ as long as I could. My Doctor stopped me before I killed myself on the road or collapsed at work and had to be hauled away by an ambulance (between my asthma and fibro, I was actually almost taken away by ambulance more times than I can count). In the same sense hurting when there are Doctors and medicines available to help is a choice that each makes him or her self. If a person has a condition that causes pain and decides to push him/ her self, that is their decision to make.  It is not the fault of myself or any other chronic pain patient who finally has had the courage to say, “I am calling it a day” to blame us because we have listened to our health care providers recommendations on how we should live our lives. I get criticized for speaking raising awareness, notwithstanding, at least I am doing something productive. I am writing, not drowning in daytime TV. The fact that I choose to educate on fibromyalgia awareness does not mean I am asking for pity. I love to write. It is my passion. It is great therapy.  There are still ignorant trolls who think this condition is not real. There are newly diagnosed people everyday; women, men and children. Fibromyalgia affects over 5 million Americans with about one in six of those being under eighteen years old! People need education available them. Who better to educate than a twenty year veteran of the condition?

Along with the art of fibromyalgia comes the art of knowing when to reach out to other people. People, as a rule, reach out for a lot of reasons. We reach out for prayers, comfort and help. We reach out to other people going through the same types of things we are going through. I have seen mothers reach out who are overwhelmed. They are tired from only getting a few hours sleep. I had four children in eight years. I understand this frustration. At least they have a cute face and a warm cuddle at the end of the day. On my ‘Sleepless in Salem’ nights, the clock just ticks away as the early morning hours march on. I feel so alone. Mothers want their children. I did not ask for this illness. As a Christian, I have found great solace reaching out through to my church family. Recently, however, I had an experience that made me guarded to say the least. Bearing in mind I am careful to try to make it clear I am not being negative. I accepted long ago my fibromyalgia and the fact that I have to live with progressive, chronic pain. I recently went through a three week bout where I had a tooth abscess followed by a cold which was then followed by a three day migraine headache. Because viruses and other illnesses hit me so much harder, even a mild cold is very difficult to fight and extremely uncomfortable. I was miserable for three weeks straight at a pain level ten. Most…. 90% of my church brothers and sisters…. are wonderful, caring people. There are, on the other hand, the ones who look for a deep, longing mystery in everything. Sometimes it is just about a virus. Sometimes it is just about a broken tooth allowing infection in. I recently reached out to my church on Facebook and asked only for prayers. I did not ask for anything else, just prayers. I have been so sick for so long that it has been months since I sat in and worshiped. The message is available online and that is great. It is very appreciated. It is, however, not the same as being there. It is not the same as being there for the music, the dancers, the group prayer, laying of hands and the warmth of a touch. Nothing replaces what being with your ‘family’ in worship brings to your soul. After putting this out, I was not pleased to get a ‘sermon’ about how I should seek God’s will in my sickness and not what I WANT. What?  Excuse me? OK, first, I had spent nearly three weeks in miserable mode. WHY was I getting this? I was not asking for prayers for my fibro and made that abundantly clear. I was very restrained, knowing the young man that posted the response was half my age, knowing he likely did not know anything about fibromyalgia and making it very clear I just wanted prayers for the secondary virus, tooth issues, etc that occurred. I don’t think wanting to feel better was being unreasonable. The person who wrote this apologized and and said he meant no harm. I don’t think he did but why did this have to have some big, huge, deep meaning? I just wanted prayers. It was just about a virus, a toothache and a headache. Even our Senior Pastor has preached on more than one occasion that sometimes things happen not because God has a reason or the enemy is out to ‘get us’ but because sometimes we have dumb, bad luck. Sometimes we just have a hubby that picks up a cold bug and gives it to us which is not his fault either. So a few more people offered up prayers and all was good and even helpful because I was improving the next morning. Out of nowhere someone comes and starts hurling Bible passages at me like a horrible sinner that needed to ‘reeee-pent!!!!’. I was dumbfounded. Did he not read the previous exchanges? Did he not ‘get it’? The quickest way a very evangelical Christian can lose me is to start hitting me with ‘hell, fire and brimstone’. I own five Bibles and have a computer that can pull any verse I want up in seconds. I know how to read. I asked for prayers, not preaching! I am a moderate- liberal Christian. I believe God is loving. I believe he is compassionate. I do not believe everything is evil. I do not believe in preaching that if you are sick or if you have a problem it is because God is trying to teach you some grand lesson, or worse, trying to punish you. I also believe before you belong to any church with a building and preacher, you have to have a personal relationship with Jesus. The sad part is, I am not sure if I am ever going to walk through the doors of that church again. The first person shell-shocked me; the second person scared me off. The saddest part? Some of the best of the best people I know belong to that church. They are hurting financially, in part because a drove of people left. Well they may have just lost me. All of this because I reached out for one thing. I reached out for prayer and only prayer.  I need to refine the art of reaching out I suppose. I am still a work of progress in this area.

Two other good coping mechanisms are various support groups and finding friends that share your pain: whether it is online through such mediums as Facebook or through your Doctors office or other local medium. The art of mastering support groups is avoiding drama! Online especially, drama can be a real problem. I have seen numerous issues blown out of huge proportion and people getting into gigantic fights. I have seen back-stabbing, name calling and have had it done to me as well. There have been dramas that I have watched from afar and have been no part of. I have had a fellow sister in pain tell me to ‘push through it’ or ‘suck it up’ when if I had said that to the same person, she would have ‘had me for lunch and spit me back out’. Talk about double standards! I have had the saddest thing happen on my husbands side of the family with a family member of whom I have tried for years to be cordial towards only to find my efforts met with lukewarm to even cold results. Both my husband as well as myself finally gave up. The sad part is, this person pushed us away and set the stage now for a gaping hole. Because of her / his (not specifying) treatment of me, my husband wants, at best, arms length and basic human courtesy to this person. There will be no real relationship…. unless someday this person sees that I did indeed try to build a foundation for a family relationship only to have effort after effort go rebuked. Now I am not naming any names of any person in this situation, I am not naming any groups, I am not naming names PERIOD. I do not want to hear through the grapevine that “Kelli was talking about this or that group” , “Kelli was talking about _____” or “Kelli was talking about ‘me’ “. Kelli is not saying who or what she is talking about….. Kelli is not naming names of any person or any group. I am making one thing clear: I am writing a story. I am telling a tale and using examples. If I wanted to name names, I would. However, I am not. Case closed. The actual point I am trying to get across is simply: Beware of drama!

I have made “friends….fellow warriors on this journey” that live as close as five minutes away and as far, as I call my ‘internet bestie” who lives down under in Australia (babe, you know who you are and I love you with all my heart) …… and every place in between in countries such as the UK, Canada, Portugal and many other places. I have a very dear friend in Yellow Knife in the northern territories of Canada…. she is one of the strongest people I know and is doing some amazing things up north! I have a super amazing friend over yonder in Alabama who talked me through some pretty dark times. She is one of about only five people who know everything that crushed my world at the first of the year. I know someone near DC and by goodness if we ever get up that way, we are meeting for lunch!  There is the woman who is probably what I consider to be my best friend and we go back to Jr. High School.  Though she does not have fibro, someone close to her is walking this walk. There are just too many wonderful people to name.  I belong to some wonderful groups that have helped hold me together when no one else could. These groups get it when I am up at 2 AM, 3 AM, 4 AM watching the clock slowly move by as I try as hard as I can to sleep but the sandman gave me a miss for the night.  Alas, where people gather….. whether in person or on in a virtual coffee house, drama can and at times does erupt. Does this mean we avoid groups? Of course not! Do we become hermits because sometimes life is not fair to us or because maybe someone says something rude. No, that would be paralyzing. I think, however, what we do is learn to back away when drama begins to rear its ugly head. I have learned two things: you pick and choose your battles and it takes two to fight. If only one of you is swinging and only one of you has his or her hands raised without throwing a punch, pretty soon the person throwing those punches will stop.

When I was diagnosed with fibromyalgia as a young Mother, I never thought my condition would get this bad. I never imagined the collateral damage that came along with the pain. I think the biggest shock, in any event, is that one becomes an ‘artist’. You master the art of your condition. Just as the great composers and painters, you learn when and how to approach everything from educating to reaching out. You will never be a finished project. You will continue to learn as you go along. Like all great artists, we become better and more skilled the longer we practice. Notwithstanding, you will become quite refined in the art of fibromyalgia. Until next time. K.

THOUGH THE IMPRESSIONISM ART PERIOD IS MY PASSION, “THE KISS” BY GUSTAV KLIMT IS MY FAVORITE ALL TIME PIECE OF ART. SOME CONSIDER THIS WORK SYMBOLIST. I HAVE ALSO SEEN IT REFERRED TO AS POST-IMPRESSIONISM.

One of the biggest frustrations anyone with fibromyalgia can attest to is the balancing act it presents to its sufferer. Fibromyalgia brings a multitude of challenges both physical and emotional…. all of which create a day by day and sometimes minute by minute ‘house of horrors’. Whether these roadblocks are put up by the pain of fibro or the judgement this misunderstood condition often brings, people that walk the ‘fibro walk’ can attest to many of the following experiences:

• FIBRO AWARENESS VS. BEING LABELED A “NEGATIVE NELLIE / NED”: I am a crusader for this condition! I post information on my Facebook page nearly daily. Whether it is inspirational quotes, You Tube spots, research articles or a picture, I am ‘so there’. I will not stop until my brain-fog makes my writing look like gibberish. The very words you are reading are a testimony to my passion for fibro awareness.  I am not negative, I am a warrior. My name means “Warrior Woman” and my parents chose wisely. Part of it may be that there are still people that label this disorder as ‘unreal’. They are trolls! 99.9% of all Doctors are now in agreement…. fibro is *very* real. The .01% of supposed ‘professionals’ that do not believe it is real should not be allowed to practice medicine.

• IT HITS US “TWICE AS HARD/ TWICE AS LONG/  TWICE AS EASY VS. BEING LABELED PARANOID: I am typing this at 4:05 AM through burning, bloodshot eyes and a tired, aching body that is yearning for sleep. I cannot keep my eyes open, but I cannot shut them to make them go to sleep.  I hurt so bad right now, it makes me shudder to itch my arm. The very act of applying light pressure to itch actually is painful.  My neck has a one inch range of motion. I also have a very sore mouth as  I had pretty wicked oral surgery three days ago for an abscessed tooth that had been agonizing me for the prior two weeks . Just when I thought things were getting better….. or  the version of ‘better’ in my world……I picked up a head cold that my husband is just now getting over. So now I have a sore and scratchy throat that is keeping me up, a sore mouth from my tooth extraction and I my pain levels are elevated even higher because I am so exhausted. Fibro makes everything expand. If I get what was a mild head cold to my husband, it is sheer misery for me. If it had been anything other than mild, I know I would end up with a roaring sinus infection and at the Doctor for antibiotics. I am seriously considering getting “Michael Jackson” masks for the next time I hear that dreaded sentence, “Um, honey, you might want to refrain from kissing me…. I think I am coming down with something”…. only to have him go into auto-pilot fifteen minutes later and kiss goodbye for the day despite having stated the fact. The sheer terror. I knew I was screwed. And no, I am not mad. It is what it is…. it is the hell that is my world; the world of a compromised immune system.

• THE ATTEMPT TO HAVE SOME QUALITY OF LIFE VS BEING SHORT ON TIME, HIGH PAIN LEVELS, TIGHT ON MONEY: As I have stated, it is a very rare day, indeed, that I have a good day. I may have a ‘good’ day (meaning pain level 6) two to three times a year. They are essentially non-existent. My days (pain level 7-10) are tolerable, bad or miserable. I have been in miserable mode for nearly three weeks and I am about to claw my eyeballs out! My husband Paul works two jobs. I do not think I have ever met anyone in my life with a better work ethic than Paul. He is devoted beyond words to both of his jobs and we are blessed that he has two good jobs. However,  we do not have much time to actually go out . With week nights racing by at light speed, Saturdays usually tied up in errands, chores and getting him out the door by evening, Sunday is our only day. Then, he volunteers on camera at church (though he did ask for a reduction to one Sunday a month because it is starting to catch up to him at times). Add one phone call every three weeks (that was changed from every other week) a month to his Mom on Sunday afternoons… but of course, as it should be!…. and though I am no math expert that leaves us with about 1-2 Sundays a month to try to do something….. anything. I am not complaining. Some couples have ‘date nights’. We cannot because he works weekend nights. On top of that, money is always a bit tight. Now, factor in that I have to ‘feel good enough’. I think we would have better odds at winning the lottery. It is absolutely soul crushing! 🙁 I will say, the one shining bright light is the Sunday every four to six weeks or so that we see and play with our Granddaughter. Now that is a truly happy, happy, happy time for both of us. It seems no matter where my pain falls that day, her very presence lifts it, if even for a few hours.

• KNOWING WHEN TO EASE UP: One of the biggest misconceptions about people with fibromyalgia is that we are ‘lazy’ and that we can just ‘push through’ our pain. One way to lose my respect….. and I literally mean there have been a few…. not a lot…. but a few people I used to respect. I now do not or hold in a different light because of the crass and insensitive comments I have heard / read over the years. It would be like telling someone without legs to ‘get up and walk’ or a blind person to ‘watch where they are going’. The day I left my last job….the day I exhausted every last minute of my FMLA time…..my Doctor ticked the box that said “NO, MY PATIENT CANNOT WORK”. That day changed my life and was the day I officially became disabled. Every specialist I see backed my Doctors decision up, 150%. My pain is not the same as anyone else. What someone might easily be able to ‘push through’….. possibly something I could have ‘pushed through’ even five years ago…..is something that would now make me collapse. The only person whose pain I am qualified to gauge is my own. And a part of that is knowing how to balance my ‘to do’ or ‘to don’t’ list so I am most efficient for my husband and myself.

Life with fibromyalgia is a day to day, minute to minute balancing act. It is a constant ‘checks and balances’ of the patient to make sure they are in optimum physical, emotional and spiritual well being. Anything from an unwanted cold to an unexpected toothache to a ‘well meaning’ friend trying to tell us how to manage our pain can send that set of balls that are carefully being juggled into a spilled frenzy. As the driver of our vessel, broken it may be, we are still the best person to gauge which side of the scale to set the next weight. And by the way, I am finishing this at approximately 5:30 AM. It will be dawn soon and I am sleepless in Salem. I have been awake for almost 22 hours. Yep. Twice as long, twice as bad…..it just sucks. This condition; it never ceases to amaze me. Until next time. K.

Do you remember this song?

http://www.youtube.com/watch?v=JPR108kwNo4

“Where Have All The Cowboys Gone?” By Paula Cole. That is a blast from the past!

I pose this question? After twenty years on this journey with this ‘condition’, fibromyalgia/ Chronic Fatigue Syndrome, where have all the good, caring Doctors gone?

Of course we see “Greys Anatomy” on television and all want the renegades. We want the “McDreamys” and the “Greys”….. the Doctors with tireless vigor and passion who went to medical school because of their unquenchable thirst for medicine, not because they lust for the almighty dollar.

When I was a little girl my Doctor, Dr. Ray Owens, North Of The River, in Bakersfield (Oildale), California, was the same Doctor that delivered me, cared for my Mom throughout her pregnancy and cared for my Mom from the time she came to Bakersfield at the age of six years old. Dr. Owens never changed. He had silver hair, however, his face was not that of an old man. His silver hair was always in a military ‘buzz cut’ and he wore one of those old time scopes on his head with the light on it Doctors of old used to wear. He would always greet me with a firm but affectionate grasp of my face and plant a firm kiss on my forehead. This was well before the days Doctors could get a law suit for doing ‘such a thing’. He cared. He was the first human being to literally touch me. I was a bit sluggish when I came out, according to my Mom, and Dr. Owens spanked my bottom and got me wailing. So he also gave me a wallop, 😉 something also now that could be seen as ‘politically incorrect’ I suppose. I am glad he did, for if it were not for that first ‘spanking’, I could have been in trouble!  He nursed every case of tonsillitis I had (at least twice a year) and the only ‘specialist’ I was ever referred out to was the Ears/Nose/Throat surgeon that finally removed those pesky tonsils of mine, Easter break, when I was in fifth grade. Of course our parents did that to all of us kids so we would not have to miss school. As a parent I now understand the thinking, as a child, I saw it as my Easter vacation being ruined. Dr. Owens splinted my pinky finger when I broke it (twice), bandaged me, soothed me and  literally saw me through every illness, bump, bruise and sprain until my High School physical when I was fourteen years old. I have had a few come close; one Physicians Assistant almost dead on (M. Collette Carver formerly of Parkway Physicians in Vinton, VA and has now moved to the east coast of VA 🙁  ). However, no Doctor I have seen has ever been able to completely fill those shoes. They simply, do not exist anymore. If they do exist, they are very rare and I certainly have not come across any such Doctors.

Why the change in the way Doctors conduct their practice? I have some theories:

1. HMO’S: There are good things and bad things about HMO’s and PPO’s. It is nice to have a set co-pay for your Doctor visit with no hidden surprises. Though many things such as CAT Scans and MRI’S have to get prior authorization, I can attest to the fact that when it is a life or death situation, that all goes out the window. I went to Lewis Gale Emergency Room on July 1, 2011 with severe abdominal pain. I had to wait a few hours, but once in back and CAT scanned, they hit the ground running. I was CAT scanned at just after 3 AM on July 2nd and in an OR by 5 AM with a perforated intestine due to a bad duodenal ulcer where my bypassed intestine was connected to my pouch. They tell post RNY patients not to take NSAIDS for a reason. I found out the hard way. I was in ICU for three days with an NG tube for five days (the most miserable thing I have ever had in my life) and hospital for a week. The bill? $80,000. But the now retired Dr. Reif Kessler saved my life and I appreciate ever nurse, NA, orderly and volunteer that assisted me. These men and women are truly in their field as a labor of love. HMO’s/ PPO’s however, have greatly limited Doctors. There are so many restrictions and rules that they must abide by, it makes it difficult, if not impossible, for them to step or even think outside the box. It is my opinion that for this reason, it is easier to maintain a very business like relationship with their patients.
2. The “God Syndrome”: I think everyone has seen more than their fair share of Doctors that have “The God Syndrome”. I also call it the “Shut up and listen”;  “What you are saying is irrelevant”; “You did not go to medical school, so what could you possibly know?…. Even though you have lived in your body _____ years and know it better than anyone.”; “I don’t care to hear what you think.” and the ‘rush in… listen as …as then can *breathe real fast*…. write a rx… and I am outta here to the next room in five mins*.  Do any or all of these ring any bells or hit any nerves? Sadly, such as in my case with a few of my Doctors I have seen along the way. Some I refuse to ever see again and others, I am sorta ‘stuck’ with them. Now, I have a LOT of Doctors and I am NOT naming names. Some are GOOD, some totally have the God syndrome, some fall somewhere in between and some, God bless them, I believe do their best but are just so overwhelmed.
3. Specialties: Our insurance has a lower copay for seeing a primary provider than a ‘specialist’. The problem today, unlike when I was a child and save for my tonsil surgery, Dr. Owens was a ‘one stop shop’, most every medical condition requires you see a ‘specialist’. For my Hashimotos Disease it is a Endocrinologist (though my newest primary care has agreed to take over my thyroid care, THANK YOU!), a Pain Management for the management of your pain in fibromyalgia and a surgeon for the tangible problems of the neck that are going to require ACDF surgery at some point in the near future. Then there is the gynecologist for the ‘yearly’ though he does do surgery as he did my ‘partial’ a few years ago. There is a specialist for everything; for us, requiring a $50 copay at each visit! Back in the day one Doctor did all these things unless you were very sick. Going to a ‘specialist’ back when I was young meant serious business. If you have psychological help, you even see a counselor and a psychiatrist: one to ‘listen’, one to treat you for your medications. You see so many Doctors today, if you have health issues, it is difficult to form a bond with many of them. They see so many patients, they know you but are so frazzled, they cannot form that bond we long for when we pine for those Doctors we see championing for their patients on “Grey’s Anatomy”.
4. Legal Issues: Today in a “Law Suit Happy” society, Doctors walk on the never ending path of “medical egg shells”. In a society where you can sue a fast food company for having hot coffee, lawyers are just as money hungry in many instances and pounce on the opportunity to get the almighty buck. Doctors tread lightly. Many are afraid to “push the envelope” for fear of a malpractice suit. I know myself for every scan, test and poke I have, it seems I have to sign and initial a series of pages as if I were buying a major appliance. Just days ago my knees needed x-rayed to check how advanced the arthritis in them has become. I had to sign in two places and initial twice for x-rays that took five minutes. Most of the time we do not even know what we are signing. I can see both sides here: I feel bad for the rare Doctor who wants to have the freedom to practice medicine the way he/she sees fit. However, people that have had a slew of mishaps like we have with our dentist here in Roanoke and are truly looking into seeking legal action have their side. I think here it is a happy medium situation. We definitely have a law suit happy society but we also have Doctors that are frozen in their tracks, afraid to try anything new innovative.

I see a lot of Doctors. I have a *wonderful* gynecologist and he is probably closest to the “Dr Owens” of my childhood that any of my Doctors have come. M. Collette Carver LNP is a jewel! I am so very sad we lost her here in the Roanoke Valley but cannot fault her wanting to move to the coast. I would if I could! If you know me well, you know I am quite vocal about most of my regular Doctors. I have ‘issues’ with some but for the most part have the best of what I can get in the area. I feel ‘over-talked’ and rushed. I feel my fibromyalgia is being ‘managed’ but do not feel my Doctor GETS IT when I say there is just no money at the end of the month for warm pool or other alternate therapies. I would love to go into the warm pool…. trust me…. however, the food bill, gas bill, electric bill, Doctor bills, Copays, and other bills (no credit cards!) come first and there is just nothing left. Is that difficult for a six figure earning Doctor of Medicine to understand? Maybe. However, unless he/she was on a full ride in medical school surely they can think back to a time, long, long ago, in a land far away called “Pre-Med” and “Medical” school when beans and ramen noodles were substance and money was as scarce as fairies. What do you do? If you are in an area with limited numbers in a certain specialty and if you are in a comfort zone with your treatment, there is little you can do unless you want to travel to UVA, two hours north or Duke/Chapel Hill, two hours south. As a footnote, the average Doctor in Roanoke, VA earns $156,423.00 a year.

http://swz.salary.com/salarywizard/Physician-Generalist-Salary-Details-Roanoke-VA.aspx

Now I am not naming names, nor will I. However, I hope enough Doctors might see this and just think. We appreciate you! We do! However, we want to be treated like people with 1/2 a brain and people that know what we can and cannot do either by limitations of our own physical capabilities or our own finances. I recently procured a new Rheumatologist. I did this for a second opinion and to get answers as to why my hands are ‘pins and needles’ numb all the time and as to why I have been taking falls since about November. Bear in mind, I picked this person after careful studying and ratings research. I was quite happy with my choice. His picture showed that he had ‘kind eyes’. He was ‘nice enough’ but he looked at me like I had two heads. “Exactly why are you here?”, I said, “To get answers.”…. long pause….. “Well if Dr ______ is ready to proceed with the ACDF surgery……”. I have reasons for waiting. Most are quite personal. I will say, however, only ONE Doctor in this area of about 300,000 and two teaching hospitals will take my neck surgery. I am very happy with the surgeon, his expertise and his bedside manner so waiting has nothing to do with him. I explained and it made a little more sense. His take: the severe stenosis I have. WOW! I researched it.

http://www.webmd.com/a-to-z-guides/cervical-spinal-stenosis-topic-overview

Indeed cervical stenosis can and does cause the constant numbness I now live with and the falls I have been taking (jello leg) on a fairly regular basis. Why couldn’t the first Doctor have just answered that for me. It was all right there in front of him in the CAT Scan and MRI reports. He did not have the time and barked, “Get in the hot pool!”, “I think it is arthritis!”

I think what these Doctors do not understand is simple: We are NOT looking for another pill. We do not expect them to wave their magic stethoscope and ‘make it all better’. We, as intelligent human beings, do want answers. I have numb hands 24 hours a day, 7 days a week. Why? This is not normal. A middle aged woman should not be averaging three to five falls a month. That is not right. I know nothing short of intense therapy and/or surgery is going to ‘fix it’, however, at least knowing why these things are happening help to some degree.

Where have all the Doctors gone? Probably Los Angeles, San Francisco, New York, Miami, etc. I have many friends in chronic pain groups online and the ones who have found ‘gems’ or ‘diamonds in the rough’ have all done so after much hunting. It is safe to assume the best of the best can afford to go to the most influential and popular locations. Also the ‘best of the best’ are human. They are going to follow the money. I would, no matter how passionate I felt about my work.

If you watch NONE of the other videos I put on, you must watch this one. For USA people who do not know who this is, Robbie Williams is very big in the UK and also is the original singer and co-writer of the song, “Angels” which has been covered numerous times. I about did a spit-take (won’t say when) when he says, “But not St Johns Wort, cuz I can get that at Boooooots.” Boots is the UK’s equivalent to CVS/ Walgreens, etc. Thank you Robbie Williams for including nicotine as a drug, because it is! A very addictive drug!  I found this video by accident but had to include it because it is just too FUNNY!. Enjoy! Until next time, K.

http://www.youtube.com/watch?v=EH1VaQ0MAtU