I am a Unique Blogger!

Yep, I got an award from a young lady named Mackenzie at https://life with an illness.wordpress.com! She has a laundry list of illnesses, she is going through so much, but she also is a talented blogger… check out her blogs.

I must admit I don’t normally accept awards, well obviously… I DO! But few and far between. As I read about being a Unique Blogger it brought me back to a time after my husband and I had purchased our home, my sister-in-law was walking through our home and said, “I just love to look at how you decorate!” I smiled (her house was immaculately decorated) … my niece chimed in asking, “what do you call this?” My sister-in-law paused for a long moment and said “eclectic”. My niece looked at me obviously puzzled, so I replied, “A lot of junk thrown together in an orderly fashion!” I laughed and laughed as I was now known as the ‘eclectic’ Auntie.

Yes, I’m down for receiving the Unique Blogger Award!

Screen Shot 2017-10-23 at 3.29.20 PM

Mackenzie, here are the answers to your questions;

1. What makes me happy? 

img_1022
Dora and Dezzie.

2. What is one goal you want to accomplish?

64807706_Kindle Ready Front Cover JPEG_7239198
I wrote a book!

3. What would I tell my teenage self?

 

 

***My nominees are as follows, optional if you accept, answer with pictures as I have, that is my request. Tell us three things about yourself using photos! Ready, set go!

Gwyn at https://thekintsukuroilife.com

Wendy at https://picnicwithants.com

Mer at https://knockedoverbyafeather.wordpress.com

MJ at https://fibrowariormynewnormal.wordpress.com

Terri at https://reclaiminghope.blog/

MoJo at https://themomentumofjo.wordpress.com

Alyssa at https://positivelyalyssa.wordpress.com

Lady Fibro Warrior at https://ladyfibrowarrior.wordpress.com

 

Thanks, Mackenzie!

IMG_3563~Kim

“Sleep on…”

When you have a chronic illness there are people in your life who will stand by you no matter what. There are people who will not be able to do that either due to lack of understanding, disbelief, or even a lack of empathy. You cannot change their minds no matter how many times you try. You will need to move on, they are now in your past. These people are not meant to be present in this part of your journey. You disengage yourself because this is the healthiest thing you can do for yourself and the other person. You stop trying to explain, the define, to apologize. You simply stop beating your head against the wall trying to make others understand you, you simply let them “sleep on…”

I must admit, this entire post came from a sermon I heard from Joel Olsteen on YouTube. Joel was telling of a story where Jesus was asking his disciples to pray for him while he went to talk with God, his Father. When he returned to check on his disciples they were sleeping, he woke them asking them again to pray. When he returned a third time and they were sleeping and Jesus realized he was on his own, he couldn’t control the actions of others, and he finally understood this as he announced to his disciples, “sleep on…”

I like watching Joel Olsteen. SNL does a skit of him and he says he likes it when they make his eye sparkle on camera, he has a great sense of humor! In fact, he starts every service with a joke, seriously. Then he gives an uplifting sermon and relates it to our everyday lives. And on the day I happened to be watching, I was very nervous about some changes my husband and I were making and how our families would react. Change is difficult in the first place, but job and lifestyle changes are the MOST difficult. I had little doubt we were taking the right steps. We had planned these huge changes over a two-year process of research, study and taking a few classes, we’re moving forward. We are ready!

Take the words “let it go” and replace them with “sleep on…” There are times when we look to a person for support and that person is no longer supportive. We look for understanding and that person is no longer understanding. We look for encouragement and that person is no longer encouraging. Why? What went wrong? Times change and people change too. The person you may have counted on is no longer the one you can count on. You’ve outgrown their purpose. Time to move on. That person can “sleep on…”

You can work on your history or you can work on your destiny, you can not do both. Pick your destiny and let your history “sleep on…”

IMG_3343~Kim

“What is IT”?

Is fibromyalgia a central nervous system disease? Well, yes it is! Let’s talk about why fibro is a central nervous system disease. Then you can explain it to others and share this information until it seems commonplace and makes sense to all of those you encounter who ask the dreaded question, “What is IT?”

The central nervous system is the information freeway that begins in the brain, runs down the spinal cord and throughout your body telling it what to do, feel, react. We are not conscious of some of these things; flinching if we touch something hot, grasping a door handle to open a door, or bending the knees to sit on a sofa. The actions we don’t necessarily think about but know how to do. The central nervous system also holds our fight or flight responses. We retreat from danger and fight for our lives when cornered.

BUT…”What is IT?”

A person with fibromyalgia has a ‘brain signal’ called a ‘pain signal’. This is constantly firing in our brains telling us we are in pain thus we feel pain all day, every day. That is what “IT” is. Now you can tell your friends!

That explanation is the very basic, uncomplicated way to explain what fibro is. Of course, we know that fibro has over 200 possible accompanying symptoms, but as the conditions of those symptoms differ with each person, the central nervous system misfiring is the basic commonality we all share with fibromyalgia.

So I end today with the above, it is a Friday fibro FYI.

IMG_3497~Kim

Sphincter of Oddi Dysfunction, I’m Deadly Serious.

Shaved ice! Best to cure…heartburn, stomach acid, nausea, … and pancreatic attacks.

IMG_2599

Ever had trouble with your pancreas? A pancreatitis attack? Well, how would one know? You would know because it feels like you are literally going to die from the pain and you invite death. Anything is better than living with the pain you feel as it crushes your middle, right under your ribs all the way around to your back. You find yourself crumpled on the floor with searing heat overtaking your midsection. You can’t straighten up and are curled in a ball, literally stifling screams from the pain you feel.

The pancreas is a little organ or “gland”, inside of your body that resembles the shape of a fish. Your pancreas inflames and quits working. All of the nutrients you consume go through you, and you begin to rapidly lose weight and have trouble remembering the day’s, week’s and month’s events as the blood is slowly being redirected from your brain to feed the other organs in your body from completely shutting down leading to your death.

That was the first stage, a clear indicator something was wrong … but I just had the ‘fat lady surgery’, (the RNY weight loss surgery) a little under five years prior. I thought nothing of a rapid weight loss period as the weight loss came in increments over the first five years after surgery, this was ‘normal’. This is what we were taught in the classes, yes, you have to take classes before the RNY surgery. The memory loss? I attributed to fibro fog. Surely this was related to my cognitive difficulties from fibromyalgia? I was so sure. I was so wrong.

Fast forward; eleven lengthy hospital stays and seven surgeries later … I found out that I had a calcium blockage in my pancreas that caused the inflammation which in-turn resulted in an idiopathic (unknown) pancreatitis diagnosis as well as a permanent sphincter of Oddi dysfunction. (Meaning the duct that drains bile would not work correctly, creating a calcium deposit by a bile back-up that inflamed the pancreas.) How’s that for a big revelation that took four years out of my life and two years that I cannot remember one damn single full day from.

I ordered and reviewed my hospital notes, trying to regain my memory. My husband wouldn’t or couldn’t talk to me about it. Some form of sheer terror would show in his eyes everytime I questioned him. All he’d ever say is, “You lived, you survived, that’s enough.”

I searched through the medical records. I had signed two DNRs. Once my husband was called into the recovery room to attempt to wake me up from the anesthesia because the nurses in recovery could not. I was not expected to live through many of the surgical procedures. The procedures which included several ERCPs, Endoscopic surgeries with stent placements to enlarge the opening of the inflamed pancreas to finally remove the calcium deposit. My skeletal remains of a gallbladder were removed. I had numerous stent placements, CT scans, and scopes. I had a living will in the system. I had a drainage tube inserted that stuck out of my stomach for over a year. Some of these notes jogged certain memories, like that damn tube, but I am not certain of the rest…

The good news is there is an 80% recovery from pancreatitis. The bad news is I am in the 20% group.

But I am still here! I am still fighting! I am still educating people that idiopathic pancreatitis is real, of unknown origin, and can be lived with even though pancreatic attacks will continue to plague me for life. They happen ‘at will’ and ‘whenever’ they damn well feel like. My doctor told me to stop blaming myself and just learn to live with this. So I quit complaining about it. I put a stop to the ridiculous and very intrusive continued surgeries they wanted to try but could not say the results would benefit me in any real way. I can put up a good fight now, I know what to do when an attack hits and when to call it a day and check into the hospital for IV fluids and painkillers … but those check-in days are few and far between.

I got this!

 

2DE45478-3139-4A04-8299-57F000C3ECAC~Kim

One of The Top 50 Fibromyalgia Blogs

I was awarded a spot in the Top 50 Fibromyalgia Blogs on the internet by Feedspot. I was notified by email and received this award along with 50 other bloggers that currently blog about Fibromyalgia.

Screen Shot 2017-10-10 at 10.13.40 AM

Thank you Feedspot for the recognition, I am truly humbled to be included in such an awesome group of bloggers.

 

11988766_10153360968976633_5104550706524625827_n
Dear Fibromyalgia

 

IMG_3343~Kim

Just point North!

Big changes happening here at my household. Remodeling continues, we have been living in a construction zone for almost 1 year… that would be enough to put me over the edge on a good day. Then there are job changes, insurance changes, late taxes to complete, a house to refinance and so much more!

I am about 8 seconds away from curling up in a ball and just crying. But. If I start, I won’t stop, this I am sure of… If I break right now, I will remain broken. I do not think I’ll rebound and my husband will simply shut down. He does this when I have an ‘episode’, almost as if he loses hope right along with me. No, I can not curl up in a ball and start crying.

As I’m writing this I have stacks of paperwork that I should be doing… but it seems so very overwhelming right now. So, what did I do?

I decorated a wreath for Halloween.

IMG_3512

Now is that a coping skill or what?!?! It took the anxiety away a bit, and a little helper pill assisted with the rest. My point is that I don’t have it together right now. I’m turning in circles and can’t seem to get my compass to point North. I am utterly lost!

I know that I have the power to pick how to react to this situation. I have the power to decide to just start dealing with one issue at a time. I just can’t figure out where to start and am utterly overwhelmed and afraid to start anywhere… compass still spinning.

So, I let today slide… tomorrow is a new day. We get to have days that are overwhelming and dealing with those days and not ending up on the floor in a puddle is a win in my book. I’ll take the win.

I’ll take a better look at that compass tomorrow…

IMG_3176~Kim

The Shadow Boxers, Fighting Fibromyalgia, Your personal Journal.

After you have been diagnosed with a chronic illness, you will begin to know yourself intimately. Some say you will decide, “what you are made of,” others, “what I can’t do anymore.” You will really be looking at your life as a half full or half empty glass. Some may not even see the glass. You will have to decide how you will live with this chronic illness. It won’t be easy. It will be one of the hardest things you have ever had to do, but you can do this.

I have co-written an interactive journal that is available for purchase on Amazon. This is not a self-help book like we are used to! Karen (my co-author) and I do not believe fibromyalgia is a ‘cookie cutter’ disease. We will give you suggestions, ideas to think about and implement if you decide they would work for you. This journal is to record YOUR thoughts and what YOU believe will benefit you! This will be your personal planner, your personal journal. You will make your own choices and write your own story!

64807706_High Resolution Front Cover_723919864807706_High Resolution Back Cover_7239198

 

The Shadow Boxers, new book listing!IMG_2728

 

 

The Shadow Boxers, new book synopsis!IMG_2730

The Shadow Boxers is available to purchase in paperback and ebook format available on Amazon. Again, this will be in printed form and e-book. And do not forget to check out the resources personally recommended by Karen and myself! They are great resources! Whether you are new to fibromyalgia or have had this disease for years, this book will speak to you!

The Shadow Boxers Link to purchase on Amazon.

IMG_2890~Kim

 

Trust Me, Eat The Monkey

I had a friend tell me that she used to trust anyone that could write a prescription. So did I. Trust. That is a big word. Those five little letters in a row can be life-altering. Do you trust me? Do I trust you? Trust is a knife wrapped with a bow. A gift that can cut you and make you bleed.

In life there are buyers and there are sellers. You have to be willing to purchase what they are selling in order for that seller to continue selling. Does this make sense? The rule of supply and demand. We all have something to sell and we all have something to buy, that is what motivates us. The bottom line is do you trust the process, the person, the outcome?

Let’s cut the through the B.S. 

I want to get well. I want the doctor to cure me! Why? Because I want to be healthy, return to the career that I love and make money so I can buy shit that I want to buy. I busted my butt getting a college diploma and I haven’t gotten my just rewards! I’m sick and tired of being a “patient”. I’m sick of being the “buyer” of those things deemed necessary by a seller. Like medications, therapies, yoga mats, TENs units, and etcetera. I want to be a seller for a change! I want to sell my services and get a big fat paycheck for the work I can be trusted to do! The work I was trained and educated to do.

What am I willing to do to become a seller? At one point, I was willing to do A-N-Y-T-H-I-N-G! If I was told to eat a monkey, I’d eat a damn monkey! I trusted the people who were telling me to eat the monkey and I ate! Guess what? It didn’t work. I am not cured. Broken trust? Not for me! I went back, bleeding with hands held open for another helping.

And I kept going back, after all, these people had prescription pads…

Eventually, trust was slowly and sadly removed from my vocabulary. Trust must now be earned. I don’t care if you can write a prescription or have several initials after your name. I do not care at all! You have to earn my trust. I’m not buying blindly anymore. I will listen and take your advice into consideration, but my purchasing power remains steadfastly with me.

I can read, I can research, I can weigh out options and make a list of pros and cons… I am smart. I am a consumer at this point in my life and I am well aware of the target that places squarely on my back. I’m the buyer. Within these confines, I need to do my due diligence! That isn’t just a good idea, it is imperative to my goal of getting as healthy as I can possibly be and living a good life.

You are smart, you can read, research and do your due diligence! Don’t blindly buy what the seller has to offer, it might be just a monkey.

 

IMG_3497~Kim

Exit Strategy, The Three Day Rule.

Recently, I have been going through a fibro flare. This flare has been brought on by a toothache, a damn toothache! I have a tooth that needs to be pulled. Since I don’t have dental insurance I go to the dental school. I am very happy with the dental school, but things take time and there is a month wait to get my dead tooth pulled.

I have been in agony. My body has turned on itself, leading to a need for antibiotics for an infection, pain pills for the fibro flare caused by the infection, and anti-nausea medication because I feel like I’m going to throw up ALL THE TIME because I am in full flare mode.

Now, the flare is ceasing. I am done with the antibiotics, decreasing the pain medication and the icky, empty, confused state of mind complete with an all over uncomfortable feeling is playing out. I know this feeling, and I know how long it will take to get through this feeling, three long agonizing days.

  • I will not be able to sleep.
  • I will not be able to eat.
  • I will not be able to think clearly… and I will probably cry, a lot, from pure exhaustion.

Well, guess what? It’s day four and I made it, again.

This is how my body works with fibromyalgia. The length of a fibromyalgia flare is always uncertain. The reasons for the flare itself are at times, uncertain. The increase in the symptoms the overall feeling of helplessness vary from flare to flare. And your flare will be different from mine! The only certainty about a flare is that it is temporary and it will eventually stop. You will return to a manageable level of pain. So how do you get back to the manageable level of pain after throwing everything you got at the monster flare?

The three-day rule.

A fibro flare is an increase in pain, fatigue and other symptoms unique to your type of fibromyalgia. Mine comes with the pain, fatigue, restless legs, nausea, and fatigue but the inability to sleep plagues me. I do try to sleep as much as I can until the flare lets go, but I have difficulty sleeping longer than a few hours at a time.

When a flare hits, it is time for rescue medications and your fibromyalgia toolbox (read this if you do not know what a fibro toolbox is;  Pick Your Box ). Anything you can think of, use, to just get through the flare. What you are not told is you will also need an exit strategy from the increase in medications you took and the body pain you feel from being so immobile for the time you had the flare.

Your exit strategy. First, this is unfortunate, you will go through three days of wishing you could just take a pain pill to make it go away. Do NOT. This is how you get addicted to pain medications. Just get through three days of feeling like crap after your flare ceases. Come up with your exit plan.

Here are a few idea that work for me, they may not work for you but you will figure out what does and you must use your exit plan. Take Tylenol or ibuprofen for the pain and rebound headaches. Use Dramamine for nausea and dizziness. Try drinking herbal tea, eat jello, use everything you have in your toolbox to keep your mind busy and pass the time. Get Netflix and binge! Sometimes … chocolate helps, (keep some mini fun bars in your freezer). Regular Coke calms the stomach, try sipping on a regular coke. (SIPPING not drinking six cans.) What I am saying is do what you need to do to get through three days after your flare. Whatever it takes.

When you hit the fourth day, get back to making smart choices … until your next flare comes along. You have your arsenal ready! You will do what you need to do and you have an exit plan in place.

You got this!

IMG_3383~Kim

Create a website or blog at WordPress.com

Up ↑