Dear Santa: A Fibromite’s Christmas Wish

Letter_to_Santa1Dear Mr. Claus,

Do you remember me? I did not live here in Virginia as a child. I lived in the foot of the great San Joaquin Valley about 100 miles north of Los Angeles. I was a cute dark haired little girl with lots of red highlights and I loved Barbie Dolls. Oh yes, in my prime toy years, it was all about Barbie….. a house, car, Motor Home, swimming pool and even an airplane. Oh how I loved that airplane for I wanted to be a flight attendant one day and see all the places I could see! Yeah, now you remember! I was usually good, not too naughty. Feisty maybe, but I never naughty. I always left you two cookies and milk.  There you go, now you got it! You remember!

I am grown up now and in fact I am a Mammo! I still feel so young inside. And in fact today 50 is young! I am not asking for things. I am not asking for possessions. But Santa, I need some help and I am hoping you are the man that can do it! I do have a Christmas list this year and I am calling it the “Fibromite’s Christmas List

I don’t need things, I need some sleep: Could you add some clarity too. My brain is working overtime and it forgets and gets mixed up and I don’t know what to do. Could you sprinkle some understanding on those who I love and hold so dear. For they get so short with me and it makes me so anxious that I resort to tears. I hear not a word lest I mess up. Then swift comes the ax of strife. Why can’t I get a good word of encouragement, it would so light up my sad and dreary life. And let me harbor on that thought for it is not dreary but for this: this illness that rules every thing I do from going to church to forgetting a small shopping list. I love with abound and do for others without judgement of their beliefs. Yet an illness that renders my brain to embers sends in the judgement police. It is a dangerous game when your heart is on a string and your life is has so little to gain and you feel your love is in vain. So Mr. Claus I implore, a miracle or perhaps more. I need your help and I am out of time, please do this for me and I won’t ask anything else for all time.

Loved ones dote on other people. They hold them in role model esteem. While I try so hard to be perfect. But fall flat on my face at everything. Dearest Santa, I need motivation, for my life is dismal at best. I hurt all the time, I need a new spine and my gut feels like it is having a fit. The smallest of things like cleaning the kitchen, are big triumphs to me, so don’t you see? Dearest Santa my list is quite simple. But I will list it one at a time anyway. And yes, I do realize the list repeats itself in a few places. It is my way of saying, “I REALLY need this!”:

  • Love, Understanding and Empathy From My Loved Ones (especially when I ‘mess up’)
  • To Quit Having To ‘Prove’ my Fibromyalgia at every turn. I cannot believe this is still happening in this day and age after nearly twenty years!
  •  A LOT Less Headaches
  • Resolution or at least Treatment of my “Gut Issues” that hold me hostage many times
  • Normal Sleep Patterns
  • A better memory
  • Once in a while could the people that only comment on my Face Book when I make a mistake press the “Like” button or make a positive / nice comment. Just once in a while.
  • More Understanding of when I get mixed up; acknowledging the good as well as the bad. I am a human being too! I need love too! I need thought and caring too! Sometimes I feel like a problem and this is a very dangerous thought process for a fibromite. 🙁
  • Normal and Restful Sleep Patterns
  • My disability to finally be out of appeals. Mr Claus, you know the story. 🙁
  • Some much needed rest for Paul
  • Did I mention, a better memory?
  • People that only comment on mistakes or to debate me on Facebook actually occasionally “Like” or have positive feedback….. it is heartbreaking to only get negative.
  • Did I mention more understanding? I think I might have

And of course, The Biggie: LESS PAIN

Oh and this is for society as a whole, and not so much as a personal, but I want to throw it in: more forgiveness and less grudge holding. This is the most unforgiving, “I will debate you until dawn because I am right”, unforgiving society in existence. And it is sad. We all have passions, opinions, voices and ways we approach things. That is the beauty of living in a free society. If we all expect the next person to agree with ‘our train of thought’ then we would all be mindless drones. So Santa, more empathy there too, if you would kind sir.


Mr Claus I appreciate your time and trouble and sure hope you can make your magic work. I know the list is stacked and the goals set high. And moving others’ hearts is a tall order to comply. If anyone can do it, you are the one who can. Letting others know of our plight and the reality of our walk is a difficult thing to do. I call Fibromyalgia the leprosy of modern times because it has such a cruel stigma, so Santa, please, 1 dash of help for me and a whole bucket load of empathy and understanding on those in our lives that just quite do not get how bad it really is for us. We hide it well. You see, I love them all so much it hurts and I have worked so hard to become a woman I like but fear no one sees it under the layers of the Fibro, spine injuries/disease in my neck and lower back and list that is far too long to take up your time with.

Letter_to_Santa2I will leave it with this song that is one of my favorites. I think it says it all. It may not be about having a chronic illness that is not just pain…. but so much more. But the point is pretty much the same. Thank you Mr Claus and we all love you and the spirit you represent. You still, at age 50, make this girl smile! Merry Christmas! And a Happy New year! Until next time, K.


Off The Wall: The Wow’s And The Whoa’s Of Social Media

socialmed1This post I am going “Off The Wall”, to some degree, and posting about our life as we know it now: Social Media. I say to some degree because I suffer with General Anxiety Disorder and anxiety is greatly increased by Fibromyalgia and CFS/ME. My anxiety levels soar when a social media drama unfolds so in a way, I guess I am still ‘hitting the wall’.

I have been wanting to do this post for some time. While I would like to say there was one straw that broke the camel’s proverbial back, I am sad to report that there are too many straws to know exactly which one made “Hump, The Camel” finally fall. I will state this now and repeat it again in a moment and at the end. This is about no one in particular and everyone. Yes, I have used specific examples, but named no specific person. If ‘you’ (when I use the word you, it is always going to be in the general sense) think my story or example is about ‘you’, please read again because everything I cite has happened to me more than once…… everything. No one is called out, no one is labeled and no one is called bad. We all fall into the frenzy of social media madness. So chill. I am just writing a blog post. socialmen2Let’s do this again properly. Before I get started, I am making a disclaimer: This is not about anyone in particular but it is about a whole lot of people together. I am not exempt. If ‘you’ think I am talking about ‘you’, I am not. I am talking about ‘general sorts’ of people that fall into a group. On the other hand, ‘you’ also may want to examine why ‘you’ are having such a personal reaction to a statement I am making that is about ‘general types of issues’. These are things I see as being sad, judgmental, smug, arrogant, hypocritical or otherwise harmful to the flow of a peaceful and respectful co-existence. On top of that, this blog is my little place on the internet to say what I want. If you are upset with me after reading this post, I probably have proven my point. But again, it is about a whole lot of people with no one in particular being singled out, and that would include myself as I have been sucked into this madness too. socialmed3

I will start with the “Wow’s” or good side of social networking because there are good things about it and when used as it should be it is a very effective product of the times we live in.

  • FAMILY AND FRIENDS: We live in the most mobile, movable society in history. Though I call it one of the ‘greatest mistakes of my life’, I myself am a California native residing in Virginia and moved just around the time most homes even knew what the internet was. Remember AOL? Social media, more specifically Facebook allows us to get in touch and keep in touch with family and friends we would either not otherwise keep in touch with or lose touch with altogether. For those who are close or who you do keep in contact with it is also a handy tool. I can text my awesome neighbor just feet away or chat with my amazing friend in Florida anytime, anywhere. If my neighbor and I have plans, we can text each other to set a time or let each other know one of us is running late.
  • MAKING NEW FRIENDS/BONDING WITH OTHERS WHO ARE ‘IN YOUR SHOES’: Facebook groups are fantastic for finding people who understand your ‘thing’, passion or problem. Some of the people I would call my closest friends in the world I met in a Facebook chronic pain group.  I have so many Facebook friends who ‘get it’ when I say I am in a bad flare or I ‘hit the wall’ after only going to run a couple errands. Bonding with people who are ‘where we are at’ in life is paramount in getting through our current situation whether it is a fabulous and wonderful thing such as raising children or a horrible thing such as living with a chronic illness. Before the internet I belonged to a play group and another church-organized group called Mothers Of Pre-Schoolers (MOPS) which was a structured group for Christian Moms to put their kids in the care of other Moms while we heard a lesson from an ‘older’ Mom (her kids were adults) and did a craft. Now these things still exist, the difference is you read about them on Facebook.
  • Expanding Our Horizons: Whether we Facebook, Twitter, Instagram, Flickr, Tumble, YouTube, Etc. Great quotes, lessons, recipes, information and wonderful journeys abound. Want to show off your kids or Grandchildren? Or if you are out and you see a beautiful sunset, the snap of a camera and it is up in an instant.  If you come across an amazing quote you can share. If cooking is your thing, you can share your latest recipe. You can tweet and hashtag your life for everyone to see. In my case, as a chronic pain and chronic fatigue patient, I too can share my blog and get it out into the eyes of fellow chronic patients, as well as hopefully our friends and family who I can only hope are educating themselves on our plight.


With good, however, comes the bad. There are many “Whoa’s” of Social Media. Things our Parents and Grandparents never would have imagined take place and much of it is just ugly.

  • TROLLS: If you have ever posted anywhere on anything or in any group, we all know what the dreaded troll is. A troll is a person with no life whose greatest pleasure is to bombard groups and just make a sloppy, word attack. They may not even be ‘against’ what they are attacking. They may be neutral or even positive about the subject. However, they get in there and bash, cuss and name call thereby stirring up strife and conflict. People bite. I have ‘fed’ plenty of trolls. It is human to defend your cause. If you see people type “Don’t feed the troll” it means don’t react because a reaction is what they want! troll
  • Pick Your Battles/Attack Mode/Get a life: My therapist is a tough cookie. She is also the most effective therapist I have ever had. One thing she hates is Facebook. Why? Because she knows how easy it is to say cruel and hurtful things with the safety of a monitor between you and your ‘target’.  She also knows that people can, will and do take anything and turn it around to start a confrontation. I literally could say, “It is a beautiful day, the sun is shining, the birds are singing and the air is crisp” and I could offend someone by that upbeat, harmless statement. This is different than a troll, this is a person you ‘know’ to some capacity, turning on you for even one or two words. Trust me, they will use one sentence and go to the mattresses on that one sentence and fight it to the death!  I am not an Angelina Jolie fan. I just am not. I do not need to say why and I make no apologies. However, when she had a elective mastectomy and was setting to have her ovaries removed because of the cancer history and genetic screening she did, I commented on her courage and the difficult decision she made. Someone actually attacked me for ‘commenting on her bravery for a decision other women make everyday’. A debate ensued. My point was this: perhaps she could serve as a model for other women if nothing else, to at least be fervent about yearly screens and be proactive about getting more in depth tests if there is a history of certain cancers in their family. I could list so many times something like this has happened when a celebrity raised awareness to a situation such as this one. The ridiculous things people get upset over is mind boggling. We live in the most overly sensitive, over reactive society in the history of man. I will admit, I too have been offended by things people say and post. I rarely comment and the few times I have, it rarely ends well. Everyone is talking and no one is listening, So many people get wrapped up in the exact wording, take one sentence and beat you over the head with it. Even if you apologize and/or explain, they continue. Why? What good is it doing? I have apologized for the love of God. What do they want, my signature in blood?  I comment much less and sit on my hands much more than I used to. I have even joined groups for things that strike a nerve, so I can vent in the group rather than risk saying something to a friend that may start a debate. I recently had a friend lash out at me for something I cannot even recall. I stood my ground on the issue, and explained. Her response was a very passive aggressive, “Ok, you win Kelli”. There is no win/lose. The person attacking me really needed to learn to pick their battles. I truly feel people are spoiling for a fight at times.
  • POLITICS: Most people have strong political views. Both politics and religion especially have been the underlying cause of wars over centuries gone by. The USA, the country I am so proud to be a citizen of, was founded on freedom. One would think for this reason that we would respect each other and our choice to both vote and worship as we wish. Sadly, I find this to be the farthest thing from the truth. The very thing I taught my children…… we vote, the person with the most votes wins and if it is not the person we voted for, we still respect that elected official because they are, after all, serving us. The quickest way to lose my respect is to politically beat a dead horse. OK, we get it, you don’t like the President, the Speaker, your Senator, etc. However, constant jabs as to what a baboon ‘we have in office’ does what good exactly? Other than making the person that posted it look like a child who did not get their way, it serves no purpose . Why even have the voting system if ‘your’ way is the only way? If that is the case, we should live only under one party and have a Monarchy in which ‘your’ party rules the roost. If ‘my’ opinion is garbage, why should I be allowed to vote? This is one of the two worst things social networking has brought about: making otherwise mature, smart and likable grown men and women resort to the antics of grade school children. In fact we teach our children to have respect for those in office, yet we cannot muster up enough respect to not spew sour grapes for four to eight years? It is ugly! And it is the quickest way to lose my respect. Being transplanted to the south, especially, it has opened my eyes even more. Our forefathers fought a hard battle and many died giving us the right to freedom and the right to vote as to who our elected officials would be. I am glad they are not here now to see the mud slinging, name calling, sick jokes, disrespect and joke made of the voting process because frankly, the way people act now is childish and embarrassing. socialmed5
  • RELIGION: Religion is an extremely personal decision. Among my closest friends I have some are like me, born again Christians (though these days I consider myself to be a Progressive Christian), but I also have Buddhist, Wiccan, Atheist/Agnostic and even a few Jewish friends. My life is diverse and richer from every one of these people. It does not change my stance on Christianity, but I love my friends and honor their right to believe as they choose. I had a very recent occurrence where someone that I thought was a friend… a good friend at that. He messaged me out of the blue and questioned my Christianity. This person ….. who is into the macabre, graves, cemeteries and general creepy places. He also frequents the paranormal group I used to be a member of (but left for two reasons: I approached the leader about an issue with *me* and asked how I could fix it and he went, well, nuts on me and the other reason, they have become very ‘dark’ and are treading into things I want nothing of…. vampire porn, zombies and demon type pictures on their site). He posts there all the time yet claims to have no ‘real interest’. Then he goes off on me about religion because I am a Christian Paranormal investigator? He is running amuck in this dark zombie fest while thumping his hell, fire and brimstone at me? The truth is, I, Paul and numerous close friends feel he may have been spying to see what I was doing and if I was planning any legal action (because the leader of said group mocked my disability in front of other people on more than one occasion). He knew that would be a deal breaker and used it when he was ready to step back.  Religion is either an explosive subject that never ends well or a mutual respect among each other to worship and coexist. I want to add that as of late, I have been having a very difficult time with a variety of things, but not one thing in particular. Out of the blue, I received a package in the mail a few days ago. I had been waiting and waiting and waiting for a $3 money order for a custom greeting card I made that I fear will never be sent. What I got was far more valuable. It was a book about angels. It was from my friend Tina up in Pennsylvania. Tina and I know each other through Facebook and though we have never met in person, I consider her to be one of my most cherished friends. She is Buddhist, but raised Lutheran for about 6 years and then did not go to church until adulthood but in her letter she conveyed that she still believes in God. This book came just when I needed it the most. I love angels and I rely on them often. I was asked to pass the book on when finished and I plan to. THIS is what ‘religion’ is about. We all have to make our call in the world as to which we pick but in my book as long as it is love, light and goodness, I am going to respect that. Tina is one of the kindest, generous people I know. Yet, I have lost many evangelical friends over my stance on gay rights, etc. Religion: unless among the closest of friends for whom you know there will be mutual respect, it is a topic that should be avoided altogether. socialmed7
  • THE UNFORGIVEN: There is no human being on this earth that is perfect. As perfect as some think they are (and believe me, I know a lot of people that think they are perfect), a person of perfection…. in my belief….. only walked this earth just over 2,000 years ago. In a nutshell, we all screw up, each and everyday. Mistakes are mistakes, sin is sin. It is how we handle our mistakes that count. If If I feel I have done nothing wrong, such as commending a celebrity for making a very difficult decision…. a celebrity I otherwise do not particularly like……I will stand my ground. Choosing to have your breasts and ovaries removed when you are healthy is a bold step. I don’t care who you are. However, if I truly make a mistake, I will own it and apologize and so did one of my closest friends when I recently found myself in the middle of something I did not anticipate. I had an incident where a friend of mine said something to another friend that was inappropriate. I was super stressed to begin with (going back ‘on the wall’ for a moment, and very sleep deprived and in the middle of the worst flare I have ever had so my brain was not at optimum thinking levels). Not wanting to make it a bigger drama than it was, I privately made it clear to my friend that I was not at all happy about what she said while trying to lay low on Facebook until things got sorted. Within an hour an apology was issued. A sincere apology. She still tells me from time to time how bad she feels for the things she said and she herself had had a rough day. This friend and I are sisters by ‘other mothers’. The person that made the comment and whom my friend lashed out at (a knee jerk reaction of protection), I have known  for years and have even helped her family in times of need. That was my pleasure because that is what friends do. I was unfriended and even worse? My husband Paul who had NO part in this situation was unfriended too! My husband is a good and kind person. He did nothing, yet he gets the Facebook guillotine? This is the freshest story I have….. but we have all been victim of the dreaded ‘unfriend/block’ button. It is sad that so many people grab a grudge and hold it like a life raft in the middle of the ocean. It is sad we teach our kids to apologize while we do not accept a true, sincere apology. However the saddest part is when you think you are a real friend to someone and you find out you are simply, a ‘throw away friend’. I think this above and beyond anything is the worst demon of social networking. Drama. It is sad and it is ugly. Socialmed8
  • THE SILENT PARTNER: We all have that friend or friends on Facebook or other social media that we post on their profile, we like their pictures and jokes, their recipes, etc. In fact in many cases, we are their biggest cheerleaders. We post… not too much, but enough to let them know that they are important to us. We certainly are not in stalker mode, but they are our family or friend and they mean something to us. Do we embarrass them? Are they trying to tell us something?   It is deeply hurtful, at times, for the non-silent partner who finds that funny picture to brighten a day…. finds that one special thing we are certain they will like. They like the exact same points that you make on their other friends’ pages and are even huge cheerleaders for other friends. They have posted rebuttals to your posts when they don’t like something you have to say. If it strikes a chord, they will chime out.  So why no positive posts on your profile? Why only speak up if something strikes a hair? Certainly not every single move you make is adverse to their thought process and in fact you know it is not because you find cute little things to brighten their day from time to time, with no response.  You may have even gone an extra step…. helping to deflect attention from yourself (such as not showing up on pages of people that it might be awkward for them), yet nothing. It is hurtful at times. It is hard to try to constantly wonder why the most innocent of sentiments go unnoticed. Perhaps once in a golden moon, when unicorns fly and The Northern Lights are visible on the equator, they may like something on your profile. This one sided posting is very distressing and very mysterious. Heart-break
  • MY WAY OR NO WAY: Having passion for something is great! From child rearing to the type of food we eat to the challenges we face on a day to day basis, we all have ‘our thing’. The problem starts when people become so consumed that they cannot see the forest for the trees. Before I proceed, I want to make this statement and I want all Moms of young children to read it twice: I do not know or know of any BAD Moms. Parenting is not a ‘one size fits all’ skill. Some Moms breastfeed and some bottle feed. Some sleep with their babies in bed, some choose to put their baby in a crib. Some Moms have to go back to work after a few weeks and some  stay at home full time. Some Moms home-school, other Moms public or private school. Some Moms vaccinate, some don’t. I could go on, but you get the drift. The problem starts when the “Mommy Wars” start and Moms who choose a way different to ‘your’ way are told they are ‘bad’ Moms. We are raising children here, not landing on Normandy. I want to quote something from another blog I read not too long ago when the writer was told off, in public, because he and his wife give their twins pacifiers: Many people — mostly parents — seem to have absurdly intense opinions about every single solitary aspect of parenting. They have these dogmas that they attach to the most unremarkable minutia of everyday parenthood and they will defend these orthodoxies ruthlessly. I don’t get it. These zealots get specific — I mean, REALLY specific — about how they think all human beings, everywhere, no matter what, should raise their own kid/kids.
    Who cares? It is not their kid getting a pacifier. Frankly how dare someone give him a lecture for that. It is the business of he and his wife. Full stop. When my kids were growing up and I was in two different Mom groups, we all did things differently. No one judged anyone on the way anyone else was raising their kids. We were a bunch of women with different backgrounds who got along great, as did our diverse children. Also, not every single solitary moment has to be a Kodak moment. Sometimes let the fun just roll. Having 50 pictures a week to put up on Facebook is a lot of work. Yes, pictures are great, but so is spontaneous fun. I have to boast about my oldest daughter who seems to have found such a happy medium. She posts pictures of the most perfect Grandbabies on earth. But she does not post a full on album everyday. It is just enough. Paul and I take a lot of pictures at times because 1. It is one of Paul’s passions and 2. With schedules, etc, we generally only see the kids about once a month (for which I am very thankful for!). 🙂  We only put maybe 1/2 the pics we take at a time to boot! But you see, we get it! We know ‘you’ are a great Mom and so is she, and her, and that lady and the one over there. There are very few ‘not such good Moms’ out there. So relax and enjoy your babies. I took a lot of (film) pictures when my kids were growing up but some of the best memories I have of my kids childhood are the ones that just….. happened.nopicsjustmemories As far as other subjects whatever it is…. and I myself really try to strike a balance with fibromyalgia awareness, it is all about moderation. The problem is, I don’t think anyone (who is ‘well’)  is really interested in learning about fibromyalgia. After all, I am just the ‘grumpy sick girl’ 🙁 That is why I post, almost daily, a fibro awareness statement. My goal is that ‘well’ people will care enough to learn about an illness that plagues approximately 400 million people worldwide.

    “Caring about the welfare of children and shaming parents are mutually exclusive endeavors.” ― Brené Brown

    “Caring about the welfare of children and shaming parents are mutually exclusive endeavors.”
    ― Brené Brown

    I cannot think of a better time to be in existence than today. I am blessed to have gone from remembering the moon walk like it was yesterday, to an age where we can talk to anyone, anywhere via social media, e-mail, Twitter, Skype, etc. in seconds. The social media revolution has brought many good things with it however, with the good there is the bad. Amid the convenience of speaking to family and friends, speaking out for your cause, learning about anything while going down Wikipedia ‘rabbit holes’ and watching endless hours of YouTube, there are things that sting like poison oak. The instant gratification of the send button sometimes causes us to say the wrong thing. When we apologize we find out who our real friends are and who they are not when that person decides that they are going to block us out of their life for making a mistake. We tiptoe around politics while watching people who we used to see as near perfection beat the horse until it is not just dead, but a carcass decaying and down to the bone. We sometimes get that person who infringes on our spiritual space and tries to ‘save’ us when they are committing one of the biggest sins in Christianity…….. judgement. We have people judge and not like us before they even meet the real ‘us’. I had this happen a few years ago with a family member by marriage. She decided (cultural differences? I did not respond to something that someone did ‘for us’ the way ‘she thought I should’…. though the person who completed the tasks was going to complete that task with or without us coming…. Who knows?) This much I do know: it was apparent from about 2 minutes off the airplane that I was being ‘tolerated’ by this person who eventually unfriended me on Facebook. I don’t really think she knows the full potential of the damage that was done by her snobbery. But it all started with social media and someone not getting that sometimes people are not ‘the same as we are’.  We have people in our lives that see us and appear to love us in the real world but virtually ignore us on Social Media even when we send them something that is cool, harmless, neutral and even something that they are really passionate about. Then there is the ‘my way or no way’. How did we ever get by in this world before the dawn of the raw food diet, pacifier vs no pacifier, helicopter parenting vs letting kids learn from their own freedom and growth. Frankly, the only thing I wanted from my parents was love and for my Mom to quit drinking. Even the divorce, though hard, was manageable. I was born in a hospital, my Mother had an epidural and though she tried to breastfeed, I ended up on the bottle. And until the age of 10 they were my “Wonder Years”. Nearly perfect. I was bright, happy and well adjusted  What caused my biggest bump in life? It was my Mother’s alcoholism that was the single most destructive thing to my existence and who I am today. And I am still trying to deal with it. So my view is this: Social Media is great! However, it is like driving a car. You have to be careful, drive with care, watch for road signs (others’ feelings, others’ hearts…. hearts are breakable, after all), storms, snow, ice and all kinds of things that driving out in the world can hurl at you. Some people are good drivers while others are really lousy drivers. Some fall somewhere in between. A good analogy? Maybe not, but it is the best one I have. As I finish this I want to again emphasize, NO NAMES were used, no PERSON was singled out and ALL these things have happened and most with much more than just one person. If you are ‘upset’ after reading this, it is not my fault. I am not saying anything anyone else has not said or thought. I am just writing about it….. on a blog…. which may or may not be considered social media. Until next time when we go back to “hitting the wall” and talk about the strain on caregivers, K.