Mind Field Monday (Hallelujah)

Depression and anxiety.

Anna went from being bedridden for two months to standing in front of an audience, performing. Takes guts.

Here is her performance in 2014 at American’s Got Talent.

Hallelujah!

IMG_0299 (1)~Kim

My Night.

In my bed.

Breathing,

Rise and fall,

Veins beat with pain.

In the darkness.

In my body,

like a song.

Stillness.

Hold my breath,

Pain pulsating, no!

Foreign.

My body,

is my own?

Pulsing pain beats.

Never ends,

Rise and fall.

~k.lynel

I Almost Lost.

As I sit here, this morning, I need to write about something that makes me feel weak. This results in a feeling of embarrassment and shame. But neither of these feelings are mine to own. What I just went through is a fact of depression, not the exception. While this is still fresh in my mind, I will share it with you. I hope, if you are familiar with these episodes, it may help to know others’ fight to survive them, too.

I have just gone through a significant depression flare. After dealing with depression for over 20 years, (co-existing with my chronic disease) these episodes of deep, dark depression are few and far between, but they happen. They are terrifying.

It started with fatigue, I could not get enough sleep. My neck hurt making it difficult to hold up my head. My lower back screamed in pain no matter sitting, walking, or lying down. But, I-had-to-sleep. My dreams were a black void of nothingness. I teetered on the verge of reality from a bottomless pit of unidentified sorrow only to wake in incredible pain. I felt awareness leave me then return, each time pain attacked my first waking moment. My only conscious thought, “I do not want to be here…”

Yesterday, I reached the deepest part of the vortex. I felt as if an actual blade had pierced my chest, leaving a gaping hole, feeling immeasurable physical trauma. My pain was almost palpable. Growing insidiously with each waking moment, every breath. (“I do not want to be here…”) I was stricken with grief! I felt hot tears release from my eyes, losing the fight for my sanity.

Unconscious…

Conscious…

Unconscious…

My husband never left my side.

Today I crept carefully out of bed, as a doe struggling to stand for the first time. The dull ache of where the blade pierced my chest is a reminder. I know nothing could have been done to prevent that emotional nightmare. While in it, I was not safe,  but I had not the means nor the fight to… “end it.” And today I will recover, slowly, the time in the black vortex still incredibly vivid in my mind. I will fight to remain despite it, I almost lost, but did not.

“I want to be here.”

image-14~Kim

Hello, Shadow Boxer???

The dictionary defines shadowboxing as a form of exercise used for training in combat sports. In psychology “shadowboxing” is a process one uses to overcome a negative self-image so success can be achieved. In the book I co-wrote, The ShadowBoxers, Fighting Fibromyalgia, Your Personal Journal, we define Shadow Boxers as individuals who are fighting against a disease they can not see. We fight to maintain health in the body, mind, and soul.

 

We, the chronically ill, are the modern-day Shadow Boxers.

64807706_Kindle Ready Front Cover JPEG_7239198

 

If you are thinking about purchasing this interactive journal, it doesn’t matter where you are in your disease, this journal will help you make sense of what is happing. If someone you love has fibromyalgia, this book will explain what they are going through. I am thrilled to list a few of the 5-star reviews that were received from Amazon customers who have purchased this book…

  • “Love this book! It has helped me understand what is going on and how to work through it.” 
  • “I like this book is a journal with lots of blank pages to let me write or draw what I feel. There are definitions that are easy to understand, and the book gives you suggestions as to what you could do to live a better life with fibromyalgia. I love the prompts. I liked reading all the stories. I am even starting to write my own story!”
  • “The Shadow Boxers is an insightful and informative book by two women who suffer from fibromyalgia and other conditions. This book describes their journies from onset, to diagnosis to the present. The authors give the reader and the fibromyalgia warriors ideas on coping with the chronic disease and suggest keeping a journal about day to day living. There are blank pages and ideas on how to start. If you are a family member or friend of someone suffering from fibromyalgia this book will help you understand this disease and hopefully give support.”
  • “I like that the book explains a fibromyalgia toolbox. It has Seven Areas of Positive Change and Six Healthy Habits to Develop for Fibromyalgia Syndrome.”

 

I thank the above for their great reviews, and there are more on Amazon! So generous and kind with your comments. Receiving, then maintaining 5 out of 5 stars since July of 2017 is very humbling. It is not only humbling, it feels like I have received a gift I had dreamed of but never thought it would come true.

May is National Fibromyalgia Awareness Month.

Sincere Thanks,

~Kim

 

In the Begining…

Once you have learned you have been diagnosed with fibromyalgia, you find relief for a split second. You have a diagnosis. Then complete fear as you realize, you have no idea what this diagnosis means? Fibromyalgia Syndrome, a chronic disease. This is where we all separate on our individual paths on our journeys through the ups and downs of dealing with jobs, family, partners, kids, friends… all while trying to determine how to fight this disease.

I have a degree in Criminal Justice and Social work. I had witnessed adversity in my entire working career. Well, my whole life was a study in adversity as I was born with a birth trauma. Once I had a diagnosis for the symptoms I was experiencing, I was thrilled. I thought now that I know what this is I can fight it! Chronic? No cure? That part I refused to believe!

I will tell you straight out the first few years are the most excruciating and painful years you will face. You fight through the pain. You fight against medication. You fight to keep your job. You fight to keep your home in order. You fight to make others understand fibromyalgia. You are already exhausted and in pain because of fibromyalgia but you fight! Chronic… no cure… remember this?

The best thing you can do when you find out you have fibromyalgia is to arm yourself with necessary skills! Read everything you can! Find a doctor who believes you and make it to every appointment they set up for you. Take medication as prescribed to help you feel as normal as possible (you will still have pain). Find a mental health therapist that deals with chronic illnesses. Keep track of all your medications, practitioners you see, and medical records from day one of diagnosis! You will need this information in the future.

Let’s break this down a bit, the first thing I did was find a book written by a doctor who has fibromyalgia, and I bought that book. This was almost 20 years ago, and I have not found a better book! It is entirely my survival manual. It covers everything from diagnosis, mind, and bodywork, co-existing conditions and what to do if you are no longer able to work. It is my fibromyalgia bible. Here it is…

Fibromyalgia and Chronic Myofascial Pain, A Survival Manual

 

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Looked for the used copies, prices are more reasonable.

 

 

I carry two lists with me to every doctor appointment. A list of my medications (current and discontinued) and a list of the doctors I have seen with the procedures I have gone through. Always. This is especially helpful when you need to change medications because they have stopped working or they had no effect. You do not want to go back on a medication that you did not tolerate very well. Be active in your medical appointments, know what medications you are taking and why. Really try to understand what a particular medication is supposed to do.

There is no one right way to be treated for fibromyalgia. Every person reacts differently to every medication, every treatment, even different kinds of exercise and therapy. So, just because it works for one does not mean it will work for another.

One other book to get to help you through your journey is an interactive journal I co-wrote! I only wish I would have had access to a book like this when I was diagnosed. However, newly diagnosed or years into your disease, you will find this book helpful. This journal will answer many of the questions you have while encouraging you to seek out the options that work for you! You will learn to live your best life with fibromyalgia.

The Shadow Boxers, Fighting Fibromyalgia, Your Personal Journal

64807706_Kindle Ready Front Cover JPEG_7239198
$9.99

 

 

 

You will learn to manage this disease!

Screen Shot 2018-02-25 at 12.48.43 PM~Kim

Before I Tripped Over a Stone, Fridays, #10

I was working as a Psychiatric Technician in the late 1980’s. You can refer back to my posts by following Before I Tripped Over a Stone, Fridays.

One thing I need to mention…

The patients were being cared for by psychiatrists, psychiatric nurses, and certified therapists. The psychiatric technicians (like me) were responsible for getting patients to their appointments, to therapy, to family sessions… we were more patient management than treatment staff. I just wanted to clarify that. These patients had the best psychiatric care and were treated by some of the top psychiatrists in the state.

 

The first post about my psych tech position is;

I had been approved to float for three shifts to the adult 6-bed unit. The adult units were in a different hospital than the adolescent units. I had been on this site working the adult unit for depression, and the adult long-term unit. We were required to float 8 shifts per quarter. It kept us tuned into other staff, and unit protocols. There were some floats that were easier than others. Six-bed was one that many dreaded but to be honest, I dreaded floating to the children’s unit. I just had a hard time seeing children in a locked unit and an even harder time with the parents! (Not saying that there was ‘fault,’ just more therapy needed for the entire family and a different setting for most of those children.)

I received my patient for my 6-bed stint, yes, one patient per tech as you shadowed them even to the restroom. My emergency pager was secured to my belt. And in I went … accidentally setting my pager off once during my three shifts. Good Lord!!! They had the WWE response team for that unit! I was impressed. These patients were extremely ill, extraordinarily violent and actively practiced self-harm. Any more information would only be for shock value, and that is not my intention with this post.

I worked those three shifts, and it took every bit of training I ever had received to come through unscathed with my patient. I did it. My patient made it three days without incident. I was ready to go back to crisis. I was going to miss my patient. She was so ill, mentally. I felt so sad for her, and I grieved for her. Her mental illness did not start until her late thirties. She had been a teacher and was a mom. Then all of that was replaced by ‘voices’ and an inability to care for herself. That is how cruel mental illness can be. Cruel.

I returned to the crisis unit. I returned to the unit knowing I did everything I could. There was no doubt left about “N.” I had to make sure I had done my job, and I did.

We had a rash of adolescents come in with drug-induced psychosis. It was spring break. They were mixing alcohol and pills. These types of combinations can kill you, but what they don’t tell you is that these combinations can just fry your brain, forever.

These patients were matched with staff on a one to one basis per shift. We had a procedure called ‘snowing’ them. They were given medication to make them sleep, giving the brain time to rest and hopefully jump start again, processing information correctly. I don’t know what was in those shots that were given, that was way above my pay grade. For 42 hours the patient would be snowed. We stayed with them around the clock, they were never, ever to be left alone. We spoon-feed them, took minute by minute notes. And literally willed them to come back. We talked to them, read to them, played music. When they were brought back out … they were better, or they were sent to an institution.

The worst for these patients (as well as the staff) was the 72 hours beforehand when we had to observe and take notes to produce the necessary paperwork for the procedure to be carried out. Everyone had to sign off on the procedure, up to and including God himself. (I think.)

These patients came in hallucinating and aggressive; sexually and physically. It took all of us working together to keep the ’72 hour holds’ away from the rest of the patients. We were successful the majority of times. At other times we’d have the kids go to their rooms or gather in one of the therapy rooms until we could regain some form of containment over the patient who was having a psychotic episode. I had worked several shifts along with my co-workers with two young gals, both were snowed, one recovered the other was not so lucky, she had to be institutionalized.

A big black limo delivered our next drug-induced psychotic patient to us from Chicago. His father was a big man, thick accent (Russian?) and walked in with his son from hospital admissions. He wanted his son to be treated in our unit. There were no insurance hoops to jump through, this guy had paid cash. When this man’s son walked into the unit, I don’t know if it was shock, fear, or sheer amazement? This kid had to be close to 280 pounds, he was not fat. He was huge! Tall! Muscular! He had jet black hair, and when he turned to look at me, he had no eyebrows. He had shaved off his eyebrows! I had never seen anything like it, black eyes and no eyebrows … welcome “Mr. Big.”

(Continued, Before I Tripped, #11)

img_0156~Kim

 

Before I tripped Over a Stone, #9

I am working as a Psychiatric Technician on an adolescent crisis unit.

Previous posts on this subject are as follows:

It was on the 5th day After “N” was released I was reporting for my regular shift. The unit director called me into the office and told me, “N” had committed suicide. She told me how he had done it and where. There was no note. Would I like the day off? What. What? What? No, I didn’t want the day off, and I would be fine, I excused myself.

I went to the staff meeting, I was given my patients and was not assigned any intakes, nor assigned to a response team. I just needed to make it through the shift. My co-workers knew that was my goal too. I didn’t want to think about “N.” Yet, I saw him on the unit everywhere I looked…

I made time to speak with “A’s” psychiatrist. Her boyfriend had been calling me threatening me with beatings, rape, blowing up my car ever since I had her put in the time-out room. I asked her psychiatrist if I should take these calls seriously? The psychiatrist said calmly, oh, “A”? She will definitely kill someone someday. He said he would take some precautions. I asked if there was anything he could do. He just brushed me off and reminded me I chose this line of work.

(F**k you very much!)

The patients on the unit had heard of “N’s” passing. There was a definite division happening on the unit; the angry, the grief-struck and the destroyers…

“Dr. Red Crisis Unit. Dr. Red, Crisis Unit immediately.”

We had three restraints that day. I had been down for dinner and heard the code, for the third time and took off running for my unit. “Kim, this one’s yours!” It was one of mine that was going off, I assembled a 6 point restraint team, and I walked in to begin. I looked at my patient and asked him to sit on his bed and show me that he was calm, or we would be taking him to the time-out room. He wouldn’t comply. I looked back at the door of his room where my team was waiting, they looked like they were a mile away! I was in trouble. I broke protocol and called out to Rick who was my point man on the restraint to take over. I started walking for the door, it felt like it took me an hour to get to the door frame. Rick stepped in and lead the restraint.

I went to the nurse’s office, put my jewelry back on, took my purse out of the locker and said tell the director I won’t be in tomorrow either… I walked off the unit.

I would end up taking three days off. I had to deal with those death threats. The police were not that helpful. One savvy telephone operator taught me a few tricks to make the caller believe he was being recorded by a security agency.  I let my anger loose on him a few times, especially when he would say creepy things like, “I like the red sweater you wore today.”  I knew I wasn’t supposed to engage with him but I would. I would tell him, “I am not in the mood to be played, do something or get the hell off my phone!” (The phone calls lasted for about two weeks then stopped abruptly.) But. I kept having nightmares that “N’s” parents were at my apartment telling me I didn’t do my job and “N’s” death was my fault.

“N” was the very first patient I ever knew personally that actually committed suicide, but he wouldn’t be the last… I remember them all. Devastating is the only word I can think of.

I called into scheduling on the fourth day and asked to float to 6-bed for a week. “WHAT?” The staff scheduler couldn’t believe it.

  • “Why on earth do you want to work 6-bed? Not a whole week Kim.”
  • “Just give me three shifts Rhonda, I want 6-bed, then I’ll go back to crisis.”

The unit we referred to as 6-bed, was feared by all staff, (if you had a brain). The team stayed pretty much on the other side of a reinforced glass window. When you went into the unit, you had to wear a pager, and if that pager alarm was pressed, you had back up right away. I needed to test my skills. I needed to see if I was still sharp or if I missed something with “N.” Was it my fault? I had to find out.

(Continued, Before I Tripped, #10)

img_0156~Kim

 

Before I Tripped Over a Stone, Fridays #7

(We are continuing from last weeks entry Before I Tripped Over a Stone, Fridays 6.)

I have taken a position as a Psychiatric Technician (psych tech) and was just removed from completing my first admission on the unit. I have been told to wait in the Unit Director’s office. As I’m sitting there, she comes in, looking furious, and says this will be recorded.  She puts the device on the table and hits record.

“Did you proceed with the admission process for “L”?” 

“Yes.” 

“Did you attempt to strike her father?”

“No.” (The charge nurse had told me what to say to the director’s questions.)

“Did you attempt to crawl over the admissions desk to inflict physical harm on this man?”

“Nope.”

“Did the unit charge nurse escort you from the room?”

“Yes.” 

“Why?”

“I wasn’t feeling well, I needed a bathroom break and then she told me she’d finish the admission.”

“That ends the session with Kim ‘——–‘, Psychiatric Technician for the Adolescent Crisis Unit on September of ‘——‘. I find no further reason to pursue this claim as the unit charge nurse corroborates her story.”

She clicked off the recorder and said someone should’ve put that man in his grave 20 years ago. “You have a verbal warning. Don’t ever do that again.”

“Never again.” (And I made sure it never happened again.)

Just then, the operator announced, “Dr. Red on ALTU (Adolescent Long Term Unit).” Shoot I don’t know where that is! “Dr. Red to ALTU immediately.” I see another psych tech from my unit hauling ass, and I know he was assigned to respond too… I take off on a full run after him, pulling off my earrings, necklace, and rings, shoving it all into my pant’s pockets.

We get to the unit, and we are quickly told what was going on. One male, 14 years of age, slit his wrists and barricaded himself in his room. He has been throwing his bedroom furniture at any staff who tries to enter his room… They have one psych tech severely injured, she was removed from the unit. The other kids are getting agitated, and we may have two more possibly aggressive patients that may need intervention. The patients have been sent to their rooms, but I see two psych techs standing outside of two doors, I figure that’d be the room for the patients that were ‘in need of possible further intervention.’

We now get our orders from the psych tech who was assigned to this patient… we will be going through a bathroom door with a mattress to keep us safe and gently tackle him. The psych tech hands out the positions for the 6 point restraint. I am asked to clear the furniture from the front door of his room so they can carry him out through that door to the time-out room.

We had about fifteen seconds of surprise on our side as we came through that bathroom door. That door had been locked because it is on the female side, the patient used the bathroom for males on the other side of the room. He never expected us… and gave up without too much of a fight. I had the broken dresser drawers removed, and the bed frame pushed back, the path was clear. He was taken to the time-out room, the unit psych nurse attended to his wrists while we removed his shoelaces and belt. We all backed out as the lead tech instructed, and the door was closed. This patient would be put on a suicide watch, and a psych tech would remain outside the door making a note of his behavior every 15 minutes.

Restraint completed, patient unharmed, safe and secure. All staff involved in 6 point restraint procedure, unharmed. Procedure sheet signed and dated, we return to our respective units.

I had only been at work for 2 hours… the rest of the day was pretty quiet thankfully… I got all finished up with “L,” getting her settled. I received a few low fives from my co-workers… I thought well, that was a terrible way to start my shift but they all seemed to approve of me. It has got to get easier. Nope… this was what a quiet day on the crisis unit looked like.

I have some very memorable patients for you yet to meet and a few outstanding psych techs that I had the honor of working with. Amazing psych techs. Incredible kids. Incredulous stories, and a tragedy that knocked the wind out of me for days.

(To be continued.)

img_0156~Kim

Before I Tripped Over a Stone, Fridays #8

Before I tripped over a Stone, Fridays, #5

I am terrified to tell this story. I reason that I am so ashamed that it even happened. There-in lies the problem…shame. I did nothing wrong. So I will finally tell my story and let it haunt me no more.


Trigger Warning: sexual assault.


I had taken a few years off of college after I completed my first year. My grades were not that great. The hard fact was I didn’t know how to study, I had to learn. High School was a breeze compared to college courses. So when I went back to college at age 22, I was fully prepared to study hard for my grades.

I picked Social Work and Criminal Justice coursework. The accredited college I went to was also known as one of the most prominent party schools in Minnesota. I was fully aware I would party my way through school, and I did, but I also worked two jobs; bartending and driving a school bus. I kept my grades high enough to make the Deans’ List a few times and was dating a very nice guy who was a DJ at a local radio station.

One night, my friends and I had gone to see a favorite local bar band, and it had been my turn to be the designated driver. After the band finished, we were getting in my car ready to leave. Then, “Dude” came running up to my car. He said his buddy went with some chick and he didn’t have a ride. Could I give him a ride to his apartment building? Sure, no problem. I knew him from school, we had even chatted a bit earlier in the evening at the bar. He was funny. I was the designated driver, after all.

I began dropping off my friends one by one, according to how close they lived and “Dude” lived the furthest out. When I pulled into his apartment parking lot he asked if he could run up and get his keys, his truck was parked close to where I lived. Sure, I was going that way anyway. But there was a group hanging out in the parking lot, very drunk, and very loud… “Well, you’re not waiting out here for me with this bunch.” So I went up to his apartment with him, feeling secure and thinking he was very thoughtful to not leave me outside with a bunch of drunk strangers!

He went to get his keys and yelled from a different room that wanted to show me a picture. I followed his voice, and it led me into his bedroom. I looked at him, stunned. He just chuckled and said it’s right there on the wall. I turned to my left. To my relief, there was a picture hanging on the wall. It was a picture of a bunch of military guys sitting on a tank. He pointed himself out. I continued to look at the picture, it was amazing how big that tank was with all those guys being able to sit on it. Then, from behind me, he reached his arms around me, restraining me with one arm and covering my eyes with the other. Everything went black.

He was not violent, he was precise. I felt like I was a participant in a very deranged choreographed sexual encounter. He didn’t speak much, but what he did say was weird, like I was his girlfriend… He was pure muscle, every time I tried to pull away, he corrected me quite easily. This went on for almost 3 hours… finally I convinced him to let me go to the bathroom.

I got into the bathroom and tried to think of a way out. Think, Kim! I had to get myself out of this! Ok, military, what did I know about the military? He spoke to me as if I were his girlfriend. How could I use that? Did he really think I enjoyed the night with him? I was going to have to be convincing and make him believe I wasn’t phased by what had just happened.

I walked back into the bedroom, he was sitting on the side of his bed, “There you are, I was just coming to see if you were ok?”

“Where are my clothes?” I started gathering them up and putting them on pretending I was bored but moving quickly. He moved closer to me. I put my hand on his chest to stop him from getting any closer. I said as calmly as I could, “I’m tired and hungry, let’s go get breakfast.” He was agreeable. I told him to remember his keys to the truck and to hurry up and get dressed because I was starving.

This was working… This WAS working! We got close to the front door, and then we walked through it! I was out of that apartment. We got into my car, I asked him where his truck was parked again? My voice was shaking, but I turned it into an attitude like I was impatient. We got to his truck, and I pulled up beside it, blocking traffic because I wanted him out of my car, quickly … he got out, then he asked me, “Where are we going for breakfast?” (I was on the brink of hysteria.)

I calmly said, “this isn’t working for me…” and stared him down. I knew I now had witnesses. We were out in public, in the daytime, holding up traffic. He said, “well, call me sometime” and he shut the door. I drove home, peeled my clothes off and threw them in the garbage, I sat in the shower and cried… how could I have been so stupid? When I got out of the shower, I heard my boyfriend’s voice on the radio. He was a DJ wrapping up his shift. “This goes out to my number one…”

I wanted my boyfriend to save me, to make it all better. I was angry with him for not being with me to hear the band. I was irrational. I was conflicted and ashamed. I wanted someone to pay, but I knew he was not deserving of my anger. I wanted to be his ‘number one’ when he called me after his shift, but I couldn’t be that anymore. I wasn’t that girl any longer. The phone was ringing, I knew it was him, but I didn’t answer… the song played to the end. And that was the end for him and me.

 

I never told a soul. I never reported the assault, I didn’t want that on my record. I broke up with my boyfriend. I wasn’t alright for a while. But I would be… I would be.

img_0156~Kim

Sexual Assault Hotline: 800-656-HOPE(4673)

(Continued, Before I Tripped, #6)

A Rant From Monday Night

It is 11:11PM, on a random Monday night. I am listening to my husband breath deeply as he sleeps. My dogs are sleeping near me, Dezzie at my feet and Dora is lying to my left. I am awake. Painfully awake! I know what is happening, I know what I need to do to make my days and nights tolerable again, but I just… can… not. It seems too hard. It looks too big, too much, too everything. I can’t. I can’t. I can’t.

(Well, this is ridiculous.)

This happens to me. I hate to assume, but I believe it happens to others as well. I’m stuck! I am over 20 years into this disease, and I feel stuck. My fibromyalgia is manageable, as much as it can be. My co-existing conditions have multiplied and are getting worse. Medications that use to work, do not.  Home remedies that seemed to work no longer do. I have to seek out new treatments all over again! Buy the snake oils and hope one is the real deal. I have to become that test dummy again, and I just don’t want to. I say can’t, but it’s more of a don’t want to.

(I need to get it together before I don’t have it together!)

I know things, a little bit about a lot of different topics. I can hold my own in most conversations. I do understand what fibromyalgia is and how it behaves in each stage. I know what you will go through because of how fibromyalgia presents itself the first few years you have it. Then it is all a mystery! Once you get into year eight or nine, things start to change rapidly. This is where I see the most significant division of how people deal with fibro.

Each person’s experience is unique, and with time, their ability to handle their disease can make or break them. The deciding factor many times comes down to their support system and have they built a healthy one? Of course, they must be able to deal with their overall physical and mental well-being. These coping skills are usually in place by the eighth or ninth year. Sometimes it takes a bit longer to get boundaries established and medications dosed correctly, but an individual is very near to establishing their patterns to live the best life they can with fibromyalgia.

(I was there, and now, I have to start all over.)

It will soon be 21 years since I was a passenger in a car accident that was the catalyst for my fibromyalgia. I thought I was home free… you are never ‘free’ when what you have is chronic, and it is a disease. A disease that may have anywhere from one to over 200 co-existing symptoms and/or conditions! I get why doctors are frustrated. I am frustrated too!

(I can handle this.)

So in the morning, I will pick up that phone, and make that difficult call to my amazing doctor and we will figure out what to do next. I do have an excellent doctor. I will handle the next stage of this disease called fibromyalgia, and we will see what kind of information I gather to deal with these symptoms until we find a cure.

And I do believe that there will be a cure one day…

(Monday night rant ends…)

IMG_0168~Kim

Find Your Tribe

Over the weekend I received a message from a wonderful woman who wanted to purchase a few of my books. I was happy she was interested and began to get her information. Then she said to me, she had just lost her best friend to suicide because she was in so much pain and no one believed she had fibromyalgia.

How can this still be happening? How? Yes, Fibromyalgia Syndrome is an invisible illness, but it is a chronic pain disease. It has officially been entered into the International Classification of Diseases Classification Manual (the ICD-10-CM) used by doctors worldwide. Fibromyalgia has been named the second most diagnosed rheumatoid disorder according to the BBC World News.  There is a blood test for a fibromyalgia diagnosis (the FM/a). MRI’s can detect the brain pattern of a fibromyalgia patient. There are commercials explaining Fibromyalgia on the TV! What else needs to be done?

“You don’t look like you are in chronic pain.”

 A woman I know told me this was said to her just last week! Her response was, “What does a person in chronic pain look like?” I believe her response was fair and just after being basically accused of lying about being in pain.

It is common for those of us with invisible illnesses to not be believed. We lose friends, family, employment, and our sense of self-worth. We isolate but in public, we shine. We work to put on an acceptable outfit, make sure we have some color on our cheeks and cover up the dark circles under our eyes. We smile through the pain. We walk down the street with grace even though every step makes us feel like crying. We make sure no one sees us fight back that pain. Why? Because we are used to not being believed.

I have been advocating for Fibromyalgia Awareness since November of 2016. That is when I started blogging, running a support group, and writing a book. I have had fibromyalgia since 1998, I was diagnosed officially in 2001. I had researched, read, questioned and learned every single thing I could before I made my stance as an advocate. I know I will never stop learning!

My biggest mistake? Believing others were learning about fibromyalgia while I was. The second mistake I have made? Believing that those around me wanted to learn about fibromyalgia. You must be careful and pick your tribe. Those who are not willing to accept your disease must be left behind as they will only hinder your progress and in severe cases lead you to your demise.

Find your tribe, your support system. Depend on those people, and they can depend on you.

We have much work yet to do. We must teach without expectation and continue to learn without assurances that those around us will follow us on our educational journey.

Always remember, you ARE enough!

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I Feel My Disease (the rough days)

The syndrome that is fibromyalgia is complicated. I research, try different ‘treatments’ and hope for the best… it never comes. The Best. I cannot find it. I feel my disease. My body reminds me with every step, reach, and stumble. Disease. Painful disease.

I am angry right now. If it were not for Anger, I’d be a puddle, on the floor sobbing. I am angry at this disease today. It is not to be ‘noticed’ by an onlooker and keeps me from doing most things I love. Worse, is not being believed therefore estranged. Left mostly alone, with my disease.

My chest hurts. I think it is because my heart is breaking. But. It keeps beating, my heart. Silence is too loud. Noise is deafening. Is my disease getting stronger? So I find Angry again and convince myself not to feel. I turn on the music to escape the pain, if only for a song.

I have days when the disease wins, and that is just the way it is. It may have a day, maybe two, and sometimes more. Eventually, I fight my disease back in its box. I search again, hoping for The Best. Stepping carefully, reaching tentatively, facing pain still. I feel my disease.

The syndrome that is fibromyalgia is complicated.

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Better days are coming I say to myself, imperfect is fine because I understand that lie. ~Kim