In Transition

I’ll be back In November. Be kind to each other! Sunday Quick Questions will be back in November as well! We are transitioning into our RV. I want to focus on this exciting time. I will have many stories to share with you! ~Kim

The Stone Begins to Roll!

Yep, we did it. We purchased our ‘rig.’ A  2020 Keystone Impact 359, 5th wheel, toy hauler. Say that five times fast! Here is the kicker; we still haven’t seen it in real life. There is no need to go to an RV dealer’s lot to purchase an RV these days if they are honest (do your homework!). You already know what you want anyway. There is now no-haggle pricing (yes I still haggled a bit, anyway) no discovering a new layout (we’ve walked through them all, this was our homework!) no new paint job unless specified that it has one. There is just not a lot of mystery!

You should go to many RV shows. You should visit many dealers, private sellers, and every seller on the web through RV Trader and RVT.com. This is a journey, not a destination. Well, it’s kind of a destination because you end up with an RV or you may not… may not would be bad at this point. YouTube videos and RV blogs are to be followed and watched with vigor (like the rabid dogs we are). You are consistently hungry for knowledge, and you must gain it before taking on this life-altering decision to full-time RV. We did it all!

So without further ado, here is our brand new home!

Isn’t she a beauty! What to name her? I just don’t know yet. All I know is that this is my ticket to living the fullest life I possibly can! No longer will I be homebound, teetering on visiting the ‘shut-in’ status. No more winters of being too afraid to venture outside in case I fall on the ice, then freeze to death.  I am so happy to be looking at a mobile life chasing the sun. I know my symptoms are increasing. Some of my conditions are getting worse… so I will travel now before that option is taken from me. I feel very blessed to have reached this destination. I am so lucky to be able to try to live this lifestyle. I want to take you all with me! Believe me, I will try.

This Fibro Warrior is finding freedom as a rolling stone!

img_1722~Kim

Talking Bluntly about Night Time Chronic Pain

September is National Pain Awareness Month.

I have a chronic pain disease called Fibromyalgia Syndrome.

You can read what fibro is: here.



(This is a typical night for me. I describe it as follows.)

I think the hardest thing for a person with chronic pain is to tell you how they are doing. (Seriously.) You ask me how I’m doing… really? Let me start by asking you, “do you really want to know?” (Probably not, sometimes maybe?)

When you ask me how I am? “I’m fine.” (That’s a flat out lie!)

I’ve read a few posts where bloggers are addressing pain, chronic pain. They are describing what pain we face and what that looks like because September is Pain Awareness Month. My friend, Terri at Reclaiming Hope describes a typical morning for a person with chronic pain. Terri could have been describing my mornings. You can read her story: here.

I will tell you what a typical night feels like for me.

It begins at about 5PM. I get very tired and extremely agitated. My evening will be filled with aches, pains, and irrational episodic thoughts… I will question my worth in this world.

I try to stay out of sight as the early evening turns into the late evening. I know bedtime is coming and without something to keep my mind occupied, it’s going to be a very long and painful night. The clock says it’s bedtime, as I crawl in, it begins. Pain. Unrelenting body pain!

I may be successful in falling asleep on my own, typically not, then I rely on a medication for sleep. My ears feel full of pounding blood. My legs feel so heavy I want to get a knife and stab them until I feel relief! My hip feels like my leg has fallen out of the socket, and my lower back starts to spasm. But these pains are the easier ones to deal with… it gets much worse.

Are you still with me? Have I shared too much? It’s very possible you are bored or feeling somewhat miffed! After All, you are an intelligent person. You certainly can tell if another person is in pain. Well, I don’t look sick! I might look tired, but not sick. I am in real pain every single day.

The night continues, and by this time I have been up at least three times. So here we go again as the next symptoms have their turn with me…

My arms will start jamming up, causing shooting pain throughout my elbows, upper arms, neck, head, and shoulders. As I try to relax, I’m often jolted back into my harsh reality by shooting pain. I try to hold myself tightly as it feels like my body is being pulled apart by some malevolent being. This is very unsettling not to mention extremely (yes) painful!

After diagnosis, a few years into my illness, I became basically bedridden. At the beginning of my relationship with my future hubby, I would be awake about four hours a day. That was it. My normal. I could push through a day once in awhile. I made sure to spend that precious ‘awake time’ with Jeff. Then this disease turned upside down on me. I now get maybe a total of four hours of sleep at night. This lack of sleep causes me to lose days! I am mentally a train wreck and physically spent and in pain.

But. You ask how I’m doing?

“I’m fine.”

September is Pain Awareness Month!

What is … IT?

What the heck is fibromyalgia?

The truth is, we know of it. We know it is about pain. We know it is chronic, there is no cure.

We do not know with certainty how it happens, what toll it will take on a person’s life, or why it varies from person to person.

How do we expect other people to understand fibromyalgia when we don’t really know ourselves? It’s a guessing game at this point. How do you explain something like Fibromyalgia Syndrome?

Let’s get down to basics when asked what is fibromyalgia, keep it simple…

No one gets in line to get a diagnosis. We receive it. It’s the gift that keeps on giving. We were never given a choice! Let’s at least work together to promote awareness and understanding of this syndrome.

 

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Ignorance on Reddit

I am hesitant to post this, but I think it’s important to acknowledge the lack of understanding about Fibromyalgia Syndrome.

Most of you are familiar with the Reddit site. You may know their tag line; Trending News and Honest Conversations. I must admit, Reddit was a foreign site to me until it came up in a google search. I clicked on the site and read a disturbing conversation. It states that it has been ‘archived’ but looks to have taken place only one year ago.

The person who asks the gateway question is either a personal trainer or a Dojo instructor. He (or she) has their first fibromyalgia  “student” and is seeking out assistance on training alternatives.

The conversation that ensues stunned me. It starts out well, then goes downhill.  There is a point where a confrontation ends up getting nasty, and the commenter deletes all of their posts. To enrage a person that much, this commenter must have said some very ignorant stuff. I do find the final comment satisfactory, apparently, a physical therapist who understands fibro.


***This may be disturbing to read, choose wisely.***


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It is very apparent to me that the misconceptions about fibromyalgia are very much alive and well. What I take away from this conversation is that we have so much more to do when advocating for Fibromyalgia Awareness.

IMG_0250~Kim

A Shame Filled Entitlement

Social Security is a Federal program we pay for every day of our working lives. I started working when I was 15 and paying into Social Security. I looked at those steep payments being taken from my check every week as a savings plans for retirement. I also knew in case of injury, I was paying into Social Security so it would be available for me if the need ever should arise. Just like having insurance on your home, car, and your very own life, this was a safety net. In the end, I needed it, and I am on disability.

Is social security an ‘entitlement’? Hell no! I paid into the program!

Why am I still so embarrassed to tell people I am on disability? Are you on disability? Are you comfortable with that? Tell me if you are because that is one thing I can’t shake, the shame I feel for taking checks from the government for a monthly payment. The disability checks are not near enough to live on, let alone pay for the needed medical attention due to the injuries that put me on this very program! People making minimum wage make twice what I do in a month and that was before the $15.00 per hour minimum wage went into effect. I used to work at McDonald’s, I’d have no qualms about going back to work there now and claim my $15.00 an hour … but I am not physically able. I am disabled!

It sucks being on disability. Calling it an entitlement only worsens the stigma. I am already filled with shame. I blog, I admin a facebook support page because it makes me feel that I am somehow earning that check; that disability payment. Does that even make sense? To me it does. I was ‘medically released’ from a job I loved. I enjoy helping people and answering their questions so blogging and admining a support group makes sense to me. Giving back and earning that government check …

I finally have an answer to the dreaded question, “What do you do for a living?”

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I am an advocate for fibromyalgia awareness, I published a book, I am a blogger, and I admin a support group. That is my identity. My reality is that I fight the fibromyalgia pain demons every day, take my medication as prescribed, and research every aspect of my health for answers. I fight the chronic fatigue and try to keep a clean house and a satisfied husband. I fight the sleepless nights and exhaustion every day to check in with my group and write a blog. I don’t always win, but I fight.

And, I forgot to mention, I receive a check from the Federal government from a program that I paid in to… there should be no shame in that.

IMG_0250~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

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$9.99

 

 

 

You will learn to manage this disease!

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

Roll Around in My Mind!

Just some thoughts… maybe lessons learned? Certainly hard-earned. Remember always, if you have life, you have a purpose.


Bad things happen to ordinary people. It is a fact, not a coincidence. Who did I think bad things happened to? The movie star that hated the limelight? The rock star that lived in a world of addiction? Maybe the guy down the street because bad things wouldn’t happen to me! Certainly not me! I was not an ‘ordinary’ person! I followed the rules, I had a career, I had a life to live! I was someone! Nope. I-am-an-ordinary-person. Bad things happen to ordinary people just trying to live life.

Things will never go back to how they used to be. The ‘good old days’ are gone. Yesterday is gone! You will never be 20 again. Or 30? But would you want to? Think of all you have learned. Would you go back if the opportunity presented itself? I wouldn’t.  There are no do-overs in real life. No one can teach you what you have to learn for yourself. I do wish I would’ve appreciated more in life when I was younger but I wasn’t capable. I did not know then what I know now. I do know I still have much more yet to learn in this life. I believe with age comes wisdom.

Don’t keep score. I used to think there was some kind of point system in this life. If I could just reach the right number of points, I would magically be a happy, healthy, wealthy person! Now throw in acquiring a chronic illness. There was a pre-fibromyalgia me, and now there is post fibromyalgia me. Even though I fought with everything I had, I couldn’t beat this thing! I thought eventually I would have earned enough points and I would beat this disease! In the end, it was dollars. I spent an enormous amount of money on “cures” and got nowhere. I visited specialists, experimented with all kinds of herbs, oils, and special diets. I tried every alternative medical program I could find. I went to every physical therapy program known to man! I didn’t win. I didn’t find “the cure.” Don’t keep score.

It is OK to ask for help. This doesn’t mean you are weak, less than, or incapable. Asking for help allows you to grow. You gain intrinsic self-knowledge and personal power in the form of inherently knowing what you need. You have to stop allowing yourself to get so worked up over someone else’s ‘suggestions’ on how to improve your life. You take control back and ask for what it is that YOU need. If you are unsure of what you need, give yourself time to discover it. Read everything you can get your hands on, consider your sources, join a support group, get a therapist. It is OK to receive help. Just make sure it is you doing the asking!

IMG_0171~Kim

 

 

And on the 8th day, I slept.

At 0930 I received an automatic voice message this morning;

“Thank you for filling your prescriptions with our pharmacy, we want you to know the prescription items you ordered have shipped.”

Today is the 8th day I have been without my medications. I had a few rescue medications that I was able to use, but for the last two days, I’ve had nothing so I improvised. I used some over the counter medications for the sole purpose of knocking myself out. The body pain was absolutely like stepping out of a boxing ring. There was the sharp pain with every movement, nagging pain while at rest, agitating restless legs, and deep depression. Finally, I broke for about two hours yesterday. I could not stop crying. Then I threw up, again and again!

My husband arrived home during my massive meltdown and crushed up some ice chips for me to suck on. He had this terrified look on his face and I felt awful. I felt guilty for putting him back in this headspace of fear. What had I done? Why hadn’t I planned better? It had been 56 hours of torment, remembering why I was indeed on medications and what my life would be like without any…

At 1330 today the doorbell rang and a man called out, “I need your signature!”

It was my medication! All of it! Every single pill I needed… I took my morning dose immediately and a pain pill, just one. Then two hours later I took one anti-anxiety pill and I laid in my bed. I slept. I slept for four hours and I woke with minimal pain. I ate a decent meal and took my evening dose and headed for a hot shower.

I made it! I made it! I made it!!!

Changing insurance plans should not have to entail such personal devastating disruption but it did. I went through it and am on the other side. Grateful that I am still a fighter and reminded what an amazing doctor I have as we journeyed through the medication jungle to find me the right kind of medication. In a sad way, this was a good reminder why I take the medication that I do and why I am receiving the disability that I do. (Even after 20 years I still question my disease, the severity of it.)

I have found what I need to take to lead my best life with this disease, now it is up to me to follow through. I’m coming back, slowly but stronger.

IMG_0075~Kim

Detour

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?

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. BUT. What we tend to 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.

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I used to drive a new SUV and wear suits to work. Now I don’t even have a car, and I wear jeans or sweats.  I take an über if I need to go somewhere or wait until my husband gets home from work to run errands. I shop at thrift stores, not department stores.  I refurbish old furniture and sell things on Craigslist. I order my groceries online so I can stick to my budget and stop 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.  I write this blog and I co-authored a book.

At first, as the anger dissipated and my pity party came to an end, I realized this is now my life, better make the best of it. Afterall, 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. I did anything and everything I was told to do to try to beat this disease. I was exhausted, broke, and hopeless.

So I stopped everything. I stopped! I started doing what worked for me. I began taking the correct medications that worked for me on time, every day. I found the supplements that fit my needs and an exercise program that worked for me. I ate what I found to be healthy and stopped obsessing over food. I found new hobbies that I could do and that I enjoyed. 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. I have a husband that loves me unconditionally as I love him. I am a dog mom, blogger, and an author. This is my life now. It is a GOOD life, a fulfilling life. Was it what I had imagined? No. It’s better!

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

Why is Fibromyalgia Syndrome an Unacceptable Diagnosis?

I was watching a YouTube lecture about fibromyalgia. (I wish I could remember the name.) The doctor giving the lecture told his students, “Telling a patient they have fibromyalgia is like telling them they have a fever, this is not an acceptable diagnosis.”

I immediately turned the TV up!

The lecturing doctor continued and I am just summarizing his major talking points. The doctor’s reasoning behind Fibromyalgia Syndrome not being an acceptable diagnosis is as follows;

  • In order for the patient to get well, each fever must be treated according to the type they have. How did the fever start? When did the fever start? What symptoms are presenting with fever? Is it due to a viral infection, flu, or a cold? How high is the fever? Is this an adult or child? A patient must be treated according to their specific type, age, and symptoms of a fever.
  • To correctly treat and diagnose fibromyalgia you must ask and find the answer to some very specific questions. How did the fibromyalgia start? What are the symptoms currently presenting with the fibromyalgia? When did the symptoms start? Fibromyalgia has layers to treat. Think of it like an onion and you are peeling back layers; physical, mental, and emotional … Fibromyalgia Syndrome as an all-inclusive diagnosis is not acceptable.
  • The common denominators here are how, when, and what. How did your patient get fibromyalgia? When did they begin feeling the symptoms of fibromyalgia? What kind of specific symptoms are they currently experiencing? All this must be taken into consideration so you may begin to treat that fibromyalgia sufferer as an individual. Just as you must know the root cause of a fever before treating it, you must also with fibromyalgia!

In conclusion, I will add, Fibromyalgia Syndrome was officially entered into the International Classification of Diseases Classification Manual (ICD-10-CM) on October 1, 2015. This manual is used as a diagnostic manual worldwide by the medical community. Fibromyalgia Syndrome was finally legitimized as a disease. Needless to say, we have a long road ahead of us to be able to decipher the varying types of this disease on a case by case basis.

I don’t have any answers, only more questions, but this is definitely a start in the right direction for the medical community.

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

Practice Koselig

Let’s re-visit Koselig and Fibromyalgia!

I Tripped Over a Stone

Koselig is a Norwegian word, loosely translated meaning cozy. Koselig is much like the Danish word Hygee also meaning cozy. Since I am of Scandinavian descent, heavy on the Norse (yes we have lutefisk for Christmas), we will talk about Koselig. The practice of embracing all things cozy! If you practice Koselig, the winter blues may be held at bay! Winter is here so why not give it a try?

Koselig is a state of mind. A feeling of enchantment with all things that make you feel cozy. A warm fire, fleece blanket and a cup of cocoa. Koselig is not only things, a person can make you feel Koselig, a gathering can, a walk through a park on a wintry day can. When was the last time you went sledding, ice skating or skiing? Embrace winter!

With fibromyalgia, you may not always be able to participate in outdoor activities.

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