Please be aware at the end of my post, I have a video about a story that touched my heart. I was contacted by Cameron Von St James regarding his wife Heather and her journey with a very serious and potentially fatal cancer. I will have a link to a short video. Because my goal is to raise awareness about Fibromyalgia and Chronic Fatigue Syndrome, I feel it is my duty to help other warriors on the battleground of illness to make their voices heard. This story is beyond amazing and so full of hope. So please watch the video both to raise awareness and to learn about this cancer that most of us know little about. Trust me, it will leave you feeling very uplifted and hopeful!
As for my subject on this blog post, I decided to write an open letter. I had seen this done before in various places and the timing is just right. So please, read with an open mind and a caring heart!
To Whom It May Concern,
My name is Kelli Glover and I want to tell you a little about my life and the challenges I face twenty four hours a day, seven days a week with an invisible and very painful illness. In addition to that I have two areas of my spine that have damage, the lower lumbar is moderate (as far as I know from the report, I may find out it is more severe when I talk to my Doctor about it at my appointment). The cervical spine is critical. These are known as ‘tangible’ issues which means they can be seen on tests, MRI, CAT and other scans. These two issues are not part of my Fibromyalgia, they are separate. I am not lazy, I do not enjoy being unemployed, I never asked for the hand I was dealt and God knows this is not how I envisioned my life. I would like to clear up misconceptions regarding those of us disabled by this unforgiving monster.
If you think I enjoy being disabled and being able to stay at home all the time, you are extremely misinformed. There is nothing fun about not being about to get out very much because you are hurting 24 hours a day, 7 days a week and having an array of other issues: Irritable Bowel Syndrome, Sensory Overload, Migraines (at least five a month), Aphasia, Brain Fog, etc. There is nothing fun about feeling like you are 90 years old upon rising every single morning and walking around the house as if you are walking bare-footed on broken glass. There is nothing whimsical about having a condition that is thought by many to be either exaggerated or by some, not even a real medical condition. This is not the life I had planned for, but this is the hand I have been dealt.
When I was first diagnosed nearly twenty years ago, many of those that loved me the most either thought I was ‘attention seeking’, a hypochondriac or they just simply did not ‘believe’ Fibromyalgia was a real disorder. Ironically, some of these people were ‘frequent sick people’ with numerous Doctors and numerous health issues of their own. I would have never assumed any of their issues were fake. Even if I felt they exaggerated, I would have never gossiped about their plight. This is my past. Today, I either refuse to be around toxic people or limit my exposure to the bare minimum. If someone does not think the pain I deal with each and every minute of every day is real or has to play the ‘one up’ game, they are at least misguided and at worst, just plain cruel. I know for a fact people have talked behind my back. One thing about talking behind someone’s back: whether it is family, ‘friends’ or co-workers, it always gets back to the person. Always. For those who talk about how this ‘condition that does not exist’, I will be sure and pass that along to the estimated 400 million people worldwide that have Fibromyalgia. The muscle knots in my neck and shoulders can not just be felt but can be seen by both Doctors and my husband Paul. Though I have known for well over a year that my neck is in execrable shape, I have recently found out my lower back is not too far behind and had issues of its own. Having taken six falls inside two months, my Doctor wanted to pinpoint what he feels is a trapped nerve, and the MRI confirmed a condition I am not prepared to disclose at this time, pending discussion of my results (and the protocol / treatment plan for the condition). To be honest, as well read as I am on medical issues regarding chronic pain, I have never heard of the primary issue with my back though arthritis, a disc bulge and Lumbar Degenerative Disc Disease to boot. So if you think it is fun to be disabled, I will gladly trade seats with anyone who is functional and even stressed out at their job!
I have always been an active and busy person. I have never been a ‘couch potato’ and though everyone deserves a lazy day here and there, I do not enjoy days on end of being stuck in the house. I worked at two call centers and did my job well. My reviews were always excellent and my customer compliments were always among the highest of any of the team members. When I worked for Liberty Medical Center, my supervisor received a hand written letter from the wife of a US Congressman on the ‘exceptional customer service’ I provided. Sure, there was stress and it was a bed of gossip (I tried to keep my head below the line of fire) but as for my job, I loved helping people.
It is lonely being home and cut off from the world all the time. On good days I am doing good to shower, do a few light chores and fix dinner. What most people see as small daily tasks, I see as triumphs. On bad days, I shower and do the barest of minimum. I will say this: I only turn the TV on one hour a day and I make no apologies because if I were well and able to work, I would DVR the show and watch it in the evening or on the weekends. I think the most horrendous, evil and horrible thing about this unforgiving condition is the way people forget you exist.
- Pain and all the other ‘add on’ conditions only tell part of the story of Fibromyalgia and Chronic Fatigue Syndrome. The one thing that rarely gets a mention is the way you simply get totally and completely forgotten.
I am having issues with my religion right now. I stated religion, not faith. I will never waver on my faith. I have a personal relationship with Jesus Christ first and foremost before religion. However as far as religion…. meaning the church I go to welcomes Paul to volunteer on camera while working two and at times three jobs, the fact I am rarely there is not noticed. I am rarely asked about. I am not on the prayer list. If ever I need to be on a prayer list it is now. I have basically fallen off their radar. We were told when we joined that one of the best things about this ‘family’ is that if you are not in church for a few weeks, you will be checked on. No one has checked on me recently. Why? I am a member. People know I have a chronic illness. People know it has taken a really difficult turn. This is not a ‘pity party’, however I would be lying if I said I was not hurt to some extent. This is my church family, after all. Having Fibro makes you the ‘red headed step child’ of many things. I often say people with Fibromyalgia are the modern day lepers. We have experienced everything from being left out of immediate family (big/decade) birthdays (things always slip out, and it does not get past me, and it is extremely hurtful to be left out) to friends that maybe get to the area every 3-5 years coming to town and not letting you know. Who wants to be around Kelli? She is defective. If you are not forgotten, you are, at best, tolerated. I don’t know if people think you are contagious (you are not). I don’t know if people just do not like to be around those who are not ‘happy, happy, happy’ all the time. Being over the top happy is not normal anymore then being super depressed. While I am pretty depressed about all this, I put on one great game face and act. No one would ever really know. I am cheerful and upbeat when we do go to social events. I could be having a level 9 pain day and trust me, I would be “Best actress” Oscar material. I don’t sit and mope at gatherings. In fact that is the farthest from the truth. I laugh and socialize. If I am feeling super bad, at worst, I might just sit and be a bit quiet. It is funny how family and friends will flock around someone with a life threatening illness or someone who has been in a horrible accident but if you have Fibromyalgia, a condition in which the suicide rate is 10 times the average percentage, you are shunned like last week’s dinner. I feel like I am an embarrassment. It hurts to the core! Yet I am the first one to help, even if I don’t feel like helping. When friends have been in accidents, had babies, etc, we have been there. Yet when the tables are turned? That is one reason I have not had my neck surgery. I will literally be 100% immobile for a few weeks. My neck has to be reconstructed. Paul has enough on him. Taking care of my every need is more than he can handle. Then there is anxiety and its fraternal twin depression. These two alone can be overwhelming, but just ‘dog pile’ them on all the other things and tell me, if you hurt all the time, every day and had stomach issues; nausea, IBS, migraines, sensory overload, insomnia followed by sleeping for hours on end (crash and burns / super fatigue episodes) and if your muscles burned…. and I mean burned and turned into spasms that radiated pain down your arms and legs like a charlie horse cramp, I believe you would be anxious and depressed. To whom it may concern, when I wake up in the morning I ache to the bone.If I am lucky I was able to sleep flat in bed 6 hours and if I had a bad night I maybe got one hour of bed sleep. I watch the person I love work 50+ hours a week, still do 40%+ of the house work, cook at least 3 nights a week, do the dishes nearly every night and give you a much needed massage every night, without complaint. And this is fun? Oh and to add one more thing: we have not had a vacation in eight years. Eight years. The one and only vacation we have had since getting married was our honeymoon. Again, I am not complaining or asking for pity, I am just trying to give you a view from the inside out.
So for those who think I am lucky not to have to work. For those who make assumptions. For those who hurt from the natural aging process….. bear in mind, I will be having these aches and pains on top of all this and I don’t even let myself go there because it is such a dark and scary place, it consumes me and frightens me beyond words. For those who think my brain fog is because I must be on ‘powerful medications’, I am actually less medicated now than I have ever been. Of the medications I do take, of this I can assure: none of them make me euphoric or doped up. Most of all for those I love and care about whether family, friend or even online buddy, please remember: I am all but house bound. I am typing these words about about 5 30 AM after waking up at 4 AM with a burning neck and a headache. I am so tired, but sleep shuns me because the pain and anxiety I feel trump the fatigue. I am hopeful yet disappointed at the same time. I am filled with hope that continued progress will be made with Fibro. However, with the condition of my spine, I still have two giant mountains to climb. Having one spine issue is bad….. having two? It is overwhelming. Impossible. Spine surgery is at best a 50/50 success. Two spine surgeries? I won’t even comment. Nonetheless, I am blessed. I have a husband that there are no words for. He understands and does more than anyone could or should have to do. My oldest daughter is such a wonderful Mother to my Grandchildren and I honestly, truly think, it is my Grandchildren that really keep me going. She blesses me by being able to see the kids often. It lifts my spirits beyond words. It is the desire to see them grow up and see the people they are going to be and the fervent intent that they know me for who I am and not for what they hear from other people. Also, my youngest daughter, who I miss so, so very much as she is away at college. She has always been so loving and compassionate. She is the most focused and driven person I have ever been blessed to know as well as amazing beyond words.
So do you still think I am ‘lucky’? Do you want to live in pain all the time? Do you want to be the subject of endless ‘behind your back’ gossip? Do you want to have constant gut problems? Do you want assumptions and judgements made by people? I *will* tell you this: going through a chronic illness lets you know who your real friends are. It lets you know if it is a true friendship or a ‘friendship of convenience’ (aka: how it benefits the other person vs. how you are doing and when there is the least bit of heat in the kitchen you get dropped like a hot potato). Do you want to deal with people calling you ‘crazy’ because you are anxious? (Note: your therapist calls you a walking ‘miracle’ given what you have endured in your life) Do you want to be home days on end? Do you want to be forgotten and left out of things? I am not the only Fibromite to have this happen: this is a very common event among not just those with Fibro, but all chronic illnesses that are not life threatening. Do you want to be an embarrassment? If you are healthy and have normal stamina and energy and just think your life sucks because you have to go to work, I will gladly trade you. As Bob Marley said, “Who are you to judge the life I live? I know I’m not perfect
-and I don’t live to be-
but before you start pointing fingers…
make sure you hands are clean!”
If you watch the show “Nashville” then you know the story of Juliette and her Mother who is a on again/off again alcoholic/addict. Most people know that my Mom had been an alcoholic from about the time I was 10 years old. My Mom got mean when she was liquored up so this story line really hit close to home. I don’t want to over shadow my guest bloggers video, so I will not link any scenes from this on this post, however, I do want to make mention of something. Juliette’s Mother Jolene finally got clean. Juliette took her in but kept a ‘wall’ up. She was downright hateful to her at times. Jolene did everything she could under the sun to win back Juliette’s love but it was never quite enough. Finally she took the fall for a ‘sex tape scandal’ and killed the person committing blackmail as well as ending her own life. For several days Juliette thought her Mom had ‘gotten high and had a thing’ with this man that had blackmailed her. However, Juliette got a letter in the mail from her Mom explaining everything. Jolene did not want Juliette’s name to be tarnished and she took the heat including giving her life up to make it look like it was all ‘on her’ (she destroyed the computer disc…. evidence of a sex tape gone forever). Though the storyline is a big 1985ish (who cares about sex tapes anymore, really?), the point was, it took the death of her Mother to finally bring down that wall. It should have never come to that. Things are just too unforgiving and complicated today. We could all use a bit less arrogance and pride and a whole lot more compassion and understanding!
I did not choose this path, but I know what is and is not real. I know who is and is not sincere and that is perhaps why so many fellow chronic pain/illness warriors I have met online are like fellow soldiers in a battle that only ‘we understand’. While we can never fully understand something we are not going through, we can certainly have empathy. This is a very bumpy road, we with chronic pain and illness travel. I know I speak for my fellow warriors when I say, we do not want pity, we just want to be accepted for who we are and remembered …. To Whom It May Concern, Until next time, K.
Please refocus your awareness to this amazing story about Heather Von St James. Heather defied the odds. When Cameron and Heather Von St James welcomed their baby girl Lily into the world, little did they know that within a few months, Heather would literally be fighting for her life. Heather was diagnosed with malignant pleural mesothelioma when Lily was just 3 1/2 months old. Heather was only 36 years old at this time. Most with this diagnosis only live about 15 months.This short video packs a punch of determination, courage, hope and triumph! Thank you Cameron Von St. James for contacting me and allowing me to share this amazing story! God Bless you, Heather and Lily….. May God continue to watch over all of you and bless you all with health, happiness and love!