I Dream of a New Season.

Do you ever get that sick feeling in the pit of your stomach when you hear about another person still maintaining full-time employment and they have fibromyalgia? You know the feeling;  your stomach ‘falls’ and you feel inadequate, incompetent, maybe even shame? That is what I was feeling last night when my husband told me his boss has fibromyalgia. His boss has many health issues but has now revealed fibromyalgia is also one of them. I couldn’t help it, I got that twinge in the pit of my stomach and feelings of inadequacies rushing through my very core. Why can I advocate for others but not myself? Why is it OK for others to do what they need to but not me? Why can I rationalize the differences each individual uses to cope with fibromyalgia and not myself?  Why, why, why…?

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I tell people who have fibromyalgia every day to give themselves a break, to listen to their bodies, to understand what they have is real. E-V-E-R-Y-D-A-Y. I am a co-administer of a Facebook page specifically for people with Fibromyalgia Syndrome. I counsel them to live their best life by doing what they need to. Their health has to be a priority. And I am proud of my group! There are members who are really struggling with this diagnosis. Men and women. They are in year one or two and the pain is the hardest to handle in the very beginning. Until you find the correct medication, the right therapy, exercise, and diet, your symptoms are all over the place. Once you get this down, your symptoms almost cycle.

  • manageable pain
  • symptoms and pain increase
  • fibro flare
  • fibro fog
  • symptoms and pain decrease
  • manageable pain

And it cycles like this at different speeds, again and again. When you are 20 years into it like me, I’m used to my level of manageable pain. My symptoms still cycle but not as quickly. I am fully prepared for them when they increase into a fibro flare and I experience the fibro fog.

So I have good pain days! Manageable pain days. Days I think, I really need to get a job. Then my husband steps in with a reality check. If I were working, cooking, and cleaning like a “normal” person, like the “old Kim” I would not have manageable pain days. So for now, I’m going to have to face and overcome my feelings of inadequacies and shame. I have chronic pain… chronic. That means forever.

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I received this from a friend who said it made her think of me.

The truth is I am first and foremost empathetic with others who have an illness. In my head, I know my facts. I know what I have, what I am facing, the best way for me to handle it, and that it is a life sentence. Period. But my heart aches for a season, a new season not filled with pain. I believe that there has to be hope, a wish for a cure. When I dream I am not limited in my activities. I like my dreams when I am free and there is no pain! When I meditate, I make up my own rules. I go to a place where there is no such thing as illness, and it is a wondrous season!

So to my friend who sent me the picture above and to you reading this, I want you to know I do own my diagnosis. I do what it takes to manage it. I try to improve what I know so I can do an even better job of coping. There is no harm in wanting to be better. I believe it’s healthy to have hope. I feel my heart wish for that new season but my knowledge shuts down the dreaming. I need to be present in my life as it is now. I have to cope. I have to manage. I need to share my knowledge and resources. However, there are times I like to listen to my heart and I let myself dream of the possibilities to come in a new season.

IMG_2890~Kim

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A Letter to Dezzie Kitty Johnson

Bare with me, I will have an outstanding epiphany by the end of this post…

Here is my beautiful girl, Dezzie, she is three years old. I rescued her a week before Christmas. I have had her for 8 weeks. I love her.

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Dezmond Kitty Johnson (Yes, that is her full, given name, courteousy of me!) was born on October 9th in 2013. She was purchased from a breeder. The woman who had purchased Dezzie was not able to handle the 55 pounds of energy this girl hit at age three and she decided to re-home her. I have a 10-year-old, silver golden-doodle named Dora and thought that she needed a friend. We lost our cat to old age and our Shi Tzu to cancer, both in the same year. Dora no longer had play mates. October 9th is the day my husband and I got married and since Dezzie was born on October 9th, I believed Dezzie was born to be ours!

Fast forward to reality! I have had my 10-year-old, Dora, since she was 11 weeks old. I knew she was going to be a big dog and I trained her accordingly. She is the most laid back, gentle giant at 85 pounds. I could not have asked for a better experience raising a dog from puppy to adult. Dora is a dream dog! Dezzie is three. She is hyper. She jumps on people, barks at other dogs, people, and the TV! She is a hunter and tries to kill all critters. To my horror, Dezzie believes small dogs and cats are to be considered critters as well. She is very smart and very naughty. Two weeks of training went out the window when her old owner came to visit … I really saw what I was up against! Playing “chase” with a big dog is not recommended nor is patting your chest so they jump up on you. (Thought everyone knew that.)

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We visited the veterinarian yesterday. I was running late and chose not to put her Gentle Lead on. This is a very humane, vet recommended, restraining device that is fitted around the dog’s nose to assist you gently redirect your dog from pulling, jumping, and attacking critters. (Eventually they won’t need this training device.) Mistake! Huge error in judgment! What do we see when we enter the Vet’s office? According to Dezzie, critters! By the time we were sequestered in the examining room, I was shaking, sweating, and out of breath. She had chased, jumped on people, and barked at everything. I was a total wreck. I looked at her in the exam room as she was lying on the cool floor completely happy, tail wagging and looking up at me. She has the most beautiful big brown eyes… Then it happened. Epiphany! This was my fault! It was up to me to teach her how to treat others, critters included. This was my job and I couldn’t do it if I was a hot mess, literally.

As we exited the veterinary office after her exam, we left as a very different owner and dog unit. I was the master, the one in charge and she was the dog, a pup really, obeying my commands. She could feel my stress, my anxiety, as I feared she would act out. So she did just what I feared, she acted out! She felt my anxiety and was therefore anxious. She saw my stress and was therefore stressed! A couple of deep breaths, a readjustment of my posture, and a firm command for her to sit followed my epiphany. I lead her out of that exam room, she did not lead me. I walked her out the door, she did not walk me… well it went almost that smoothly! I had to re-direct a few times, commanding sit and stay. She did listen. My naughty little 55 pound energizer bunny listened to her mama! She received praise.

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I had this skill set. I was trained to respond to stressful events without anxiety and in a calm manner. I used these skills in my line of work which included corrections and social work. Had I lost my ability to use these skills once I developed Fibromyalgia Syndrome? Nope. I just forgot I had the power. I had the knowledge. I had the ability to choose my response. Even if you are not trained in an official capacity, you too have the power to choose your reactions. This is a very powerful skill once practiced; no illness, no circumstance, no single person can take from you!

Fibromyalgia tends to make you feel out of control, stressed and filled with anxiety because you do not know what your outcome will be. You do not even know how you will physically feel in an hour! You must come to terms with the knowledge that you cannot control unforeseen events that happen in your life. You can only control your response. Stop worrying about what might happen, how you might feel and choose to respond to what is happening and what you are feeling. I was choosing my responses with my illness, but not my dog. I’ve had fibromyalgia for 20 years, I’ve only had Dezzie for 8 weeks. Time to choose my response! I’m not going to react with stress and anxiety to a 55 pound dog nor an illness. Seriously. I got this!

 

Dear Dezmond Kitty Johnson,

I adopted you when you were only three years old. I loved you immediately. You are a beautiful girl who has stolen my heart. You are full of energy and a little bit naughty. Even though I think it is funny at times when you are naughty, I can’t continue to let you be a naughty pup. So I want you to know I will train you, discipline you and praise you. You are my dog and I am your owner.  I will do what is best for you and what is best for me. You will be loved, cared for, and sheltered. You will be protected and kissed on the nose. You will obey me and you will change your behavior on my command. Thank you, Dezzie, for reminding me that I can choose to raise you up to be a good dog and that the choice was mine all along.

                                                                                                                Love, Mama

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Dezzie and Dora

 

IMG_1650~Kim

To: Every Woman, From: Austin

 

 

Ten Facts Every Woman Should Know

  1. Everyone has rolls when they bend over.
  2. When someone tells you that you are beautiful, believe them. They are not lying.
  3. Sometimes we all wake up with breath that could kill a goat.
  4. For every woman unhappy with her stretch marks there is another woman who wishes she had them.
  5. You should definitely have more confidence and if you saw the way others saw you, you would.
  6. Don’t look for a man to save you, be able to save yourself.
  7. It is OK not to love every part of your body, but you should.
  8. We all have that one friend who seems to have it all together. The woman with the seemingly perfect life. Well, you might be that woman to someone else.
  9. You should be a priority. Not an option, last resort, or back up plan.
  10. You are a woman, that alone makes you pretty darn remarkable.

-Austin Blood

http://www.austinblood.com

 

It’s so beautiful when the boy smiles…

Nothing lights up my world as much as when my husband smiles! He has a beautiful smile. When he laughs, really laughs… I can hear the joy in his tone and it’s infectious! My husband, my dogs, this is my world, my little family. I am grateful. I am blessed.

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I fought very hard to regain my health after a car accident in 1998 left me with a myriad of chronic pain conditions, one of those being Fibromyalgia Syndrome. I wanted to live the life I felt I should live. I had a career! It had always been about a career for me. Not dogs, not kids, not a husband! Some days it is good to step back and re-evaluate your life. Why are you doing what you are doing? Why do these ‘things’ mean so much to you? What would happen to your self-worth if these things were taken from you?

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Well, everything can all be taken from you in the blink of an eye. No matter how sucky you think your current situation is… it can get worse. What we forget is it can get better! It will get better! Illness creates a detour in our lives. Sometimes the detour is temporary. Other times the detour becomes permanent. It’s acute vs. chronic. The biggest challenge you will ever face in your life is to take that detour and realize it will be permanent. Your life will change, drastically.

Guess what? I used to drive a new SUV and wear suits to work. Now I don’t even have a car, and I wear jeans and sweats.  I take a über if I need to go somewhere or wait until my husband gets home from work to run errands. Anything I need to do during the day, I can still do after 5! It’s a 24-hour world now. I shop at thrift stores. You have to find the good ones, so you visit quite a few but then you hit the jackpot! I refurbish old furniture and sell things on Craigslist. I order my groceries online, this helps me stick to my budget and stops the impulse buys. We purchased a duplex. I take care of renting and paperwork for the upper level (we live in the lower level) and I determine our monthly budget. My husband despises paper work and budgets. I write this blog, I am co-authoring a book, and I am an administrator for a Facebook Group called Fighting Fibromyalgia with Kim, Karen, and Andrea.

It took me quite a few years to get to a standing position again after my accident. I made a lot of changes. As soon as the anger dissipated and the pity party came to an end, I realized this is now my life, better make the best of it. I had read everything I could get my hands on. I had spent an enormous amount of money on doctors. I had tried every alternative treatment available. So, I stopped. I stopped! I started doing what worked for me. I began taking the correct medications that worked for me. I put together an exercise program that worked for me. When I was tired, I rested. I found out who this new Kim was going to be. A  5’2″ blonde woman with fluctuating weight, a husband that loves me unconditionally as I love him, a dog mom and a writer, blogger, and group leader. This is my life now. It is a GOOD life, a healthy life, a fulfilling life. Was it what I had imagined? No. It’s better.

IMG_3064~Kim

My Paradigm Shift.

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When my husband said this to me I honestly experienced a paradigm shift but first I must explain…

I had gone from a world of hospitals, surgeries, medications, and not caring whether I lived or died to a life that I had no desire to live out. I hadn’t planned on surviving. I was sure I would not. I had been hospitalized for a blockage in my pancreas that took lengthy hospital stays, eleven in all, and seven surgeries to restore my pancreas back to health. This fight with idiopathic chronic pancreatitis took four years of memories, family gatherings, and time from me. It took a toll on my husband, our time together and my ability to be a participant in my life. I can remember almost nothing of those years so I fell into a deep, devastating depression. I couldn’t claw my way to the surface.

I knew three things had happened during those four years. Most of my family members were angry with my behavior, my husband was frustrated with my memory problems, and my primary care physician was extremely happy every time she saw me that I was still alive. Confusing, I know.

When you live with a chronic condition like Fibromyalgia Syndrome you tend to believe everything you experience relates to this syndrome. You may try to self-medicate, self- diagnose, and self-treat additional symptoms that come your way. I did. By the time I reached out for medical care, my pancreas was shutting down, starving my body of the nutrients needed to think, sustain weight, and remember. This leads to organ failure then death.

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How was I going to make up for the bad feelings my loved ones had about me when I couldn’t remember what I had done? I did get a lot of the blanks filled in by my husband and best friend Holly, who, by the way, never wavered in our friendship. I had acted very irresponsibly and my mental health was questioned. At this time no one knew, including myself, that my pancreas was shutting down. I went ahead and made my apologies but the damage was done. Letter after letter, email after email… “I’m sorry.” Finally, my husband said I must stop. I was fueling his anger towards my family without even knowing it. But my last-ditch effort was to apologize face to face. And I did that and was met with, “You were really f**ked up.” There would be no understanding from many. But some did choose to understand, and some did choose to forgive. Others simply did not care, “get over it.”

15871964_10154019911976604_8758913617386085532_nI finally found some semblance of self-respect after I talked at length about my feelings with my husband. I was devastated that I was held in such disdain from those I loved so dearly. I felt I would never feel like a whole person again and any action I took was met with suspicion. This is when he said to me, “The environment dealt you a few bad hands. You survived! You are a fighter, that is what I see.” His words reached into that dark place I was living in and opened a window, I could see the sunshine again.

So why am I revisiting this painful part of my past? I am here at this point in my life because of it. I want you to know you can make it out of the depths of despair because I did. I want to bring you hope.

Not everyone will like you even if they love you.  There is no such thing as unconditional understanding but there is unconditional love. You do not have to apologize for being ill, people get it or they don’t. Unpack your emotional baggage, it is not taking you anywhere. Now it is up to you. You can choose to harden your heart and stay bitter or learn from it and start unpacking.

IMG_1829~Kim

 

Unwrap Your Present.

I’ve been doing a lot of thinking about people in my life. Those that have come and gone, those that I think about but something has damaged our relationship and those who are still with me. There are those close to me who have weathered the storm with me by understanding they do not have the power to fix me. I think about the new friends I have made and wonder how I can be a good friend to them? I think about Father Time and what a thief he really is… I can’t buy back lost time.

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But there is a lesson that I have indeed learned and that is, I am taking back my power! I have said my apologies for my past behavior (most of it stemming from poor health), been very open and answered any questions, no matter how personal, asked of me … this has been a lesson in futility. Circumstances remain the same. Attitudes aren’t easily changed. So it is time for me to let it go because I have the power to choose that option.

 

Although I have tried to move on before I have been unable to. Some thought pattern always got in my way. This is the first time I will no longer dwell on what was and I will live for what is because I finally can feel the value of my life. I have grieved for those I have lost, and those still distant. I believe with all my heart I have tried to make things right. I cannot fix someone else’s issues. Living in the past is stressful, and it limits what I can achieve in the present. I am choosing the relationships I have now. I am closing the book on the past. Those chapters have been read and re-read too many times, causing too many tears and wasted time. The past has been stealing my happiness and I will not allow for this anymore. Those in my present deserve all of my time and effort and I will give them as much as I can. I am going to unwrap my present.

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IMG_1376 (1)~Kim

Political Correctness in Medicine?

Words that marginalize, are slanderous and hurtful to select individuals of the population are never to be tolerated! This is not what I am talking about in this post. Let’s get that out-of-the-way right up front! What I do want to discuss is the term ‘political correctness’ used for personal benefit or cause.

Lately, the push for political correctness has become a personal agenda that we pull out of our pocket when we need to get our wants and/or needs to be met. Political correctness is an over used fall-back term to justify what a minority of the population deem appropriate for The majority of us. This so-called ‘politically correct’ group defines what is appropriate in our daily lives, our schools, even our churches. This is the group that demands separation of church and state yet expects government funding for such state benefits. This makes no sense.

 

Let’s look at the word, uncomfortable, as some of you reading this may be feeling right now. Let’s say a doctor asks us if we are in pain… “well, I’m uncomfortable.” Somehow this feels like an empowering, politically correct statement to you. To a doctor, this does not seem like a medical issue. Your underwear could be crawling up your butt crack and leaving you in an uncomfortable state. I know that was a bit crass but I need to make my point. Some words are supposed to be blunt so that others may acquire the proper understanding of your current situation.

If a doctor asks you if you are in pain, you better know what your answer is and as directly as you can, you respond to that question. That will be the difference between you getting adequate care or not. If you feel the need for empowerment at a doctor appointment, change your brand of underwear.

  1. Do people with fibromyalgia have pain? Pain (noun) physical suffering or discomfort caused by illness or injury. Yes!
  2. Do they suffer from this pain? Suffering (noun) the state of undergoing pain, distress, or hardship. Yes!

Why has being in pain, and admitting to suffering from that pain somehow become politically incorrect?   This is beyond my comprehension. I have a real diagnosis of a syndrome that causes pain and I suffer because of it. It is called Fibromyalgia Syndrome. I am not medically challenged, a victim of circumstance, or a survivor of a disease. I have a chronic syndrome that causes pain and suffering. Blunt. To the point. I need medical assistance to deal with my pain and suffering. I feel no less empowered for seeking medical help because I am busy building my life, with the tools I need, to lead my best life as a woman with Fibromyalgia Syndrome.

cropped-fullsizerender-56~Kim

 

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The Fibrofog Theory.

I feel like I am back in the 9th grade, in chemistry class, proudly proclaiming I have a theory that I want to test. Of course, the theory I am suggesting would best be left to physiology professors to prove or disprove…I am going to argue my point for proving my theory as fact;

Cognitive dysfunction experienced by fibromyalgia sufferers often called “Fibrofog” is caused when the sufferer can no longer tolerate the chronic pain associated with fibromyalgia.

Fibromyalgia is a central nervous system disorder. The central nervous system is made up of the brain, spinal cord, and nerves in the spinal cord.This means we are sensitive to e-v-e-r-y-t-h-i-n-g. It is not that we are emotionally over-sensitive. We physically feel things to a degree that people without fibromyalgia would not. It is a physiological thing. People with fibromyalgia are sensitive to unpleasant things, medically this is called “noxious stimuli.” This stimulus can be smells, lights, noise, touch, this is our central nervous system overreacting to what is around us including the pain we experience.

When we go to the doctor we are asked to say where we are on the pain scale; 0 = happy face, 10 = sad, crying, agony face. As a person with chronic pain, you have pain, all-the-time so you never experience the happy face. I know I don’t. The happy face and I are no longer an item. We haven’t seen each other in years! Unless given pain-relieving medication in the hospital, I don’t even get to flirt with the #2 face on the scale. The hospital no longer attempts to bring chronic pain sufferers down the pain scale to a happy face. We are asked at what level is our pain “tolerable.” Well, I’d like to try no pain (get me to that happy face) since I’m here, in a hospital, surrounded by medical professionals. The medical field no longer believes in relieving the pain that a chronic pain patient is in. Maybe they fear we are seeking medications for pleasure? How much fun can one have in a hospital? Those forms I signed that stated I am entitled to be treated for my pain… just what were those for then? I’ve never used the word entitled for myself but the form that I signed did. So reunite me with the happy face!

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Let me introduce you to the stage of numb, every person with chronic pain knows it. We have just come through a ‘flare’ (increased pain, coexisting conditions, and fatigue) or might still be in it! We have been battling hard pain for days, the fatigue is overwhelming, and our ability to manage our ‘flare’ is compromised by the extreme pain, lack of sleep and inability to find comfort. We eventually surrender to the stage of numb. We become brain-dead; numb. Cognitively we check out. Words may not make sense, tasks are difficult to complete, simple math is difficult, everything is distracting, your memory is gone and you cannot remember what you are looking for or even doing in the first place. You are experiencing a complete shut down because of a sensory overload which I believe is the inability to deal any further with chronic pain. This is cognitive dysfunction; fibro fog.

We all know when we are feeling a little ‘foggy’. Anyone who didn’t get a good night’s sleep knows when their memory is a bit impaired, a little off their norm. There is a tendency to interpret a cognitive impairment with cognitive dysfunction, the two are not the same. Lapses in memory, forgetfulness, not recalling someone’s name; these are examples of an impairment. You are well aware you are not good with memory, tend to forget where you put things and are bad at remembering names. An impairment that you can correct if you wish. Fibro fog is a cognitive dysfunction. When you are in a  fibro fog there is nothing you can do to correct it. You may not even remember the depths of the dysfunction you were in.

In conclusion, I have read a few articles about ‘suffering steps’ vs. ‘pain scales’ but have never come across one that I felt would serve the fibromyalgia community objectively. Pain is subjective of course, but there are steps that take fibromyalgia sufferers from awareness to the extreme of dissociating with pain. A ‘step’ or ‘pain’ scale for chronic pain sufferers needs to be identified and processed throughout medical offices and hospitals.

IMG_2083~Kim

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