Let’s Make a Smash Book!

What is a smash book you ask? It is similar to scrapbooking without the rules. All those pictures you don’t know what to do with? Put them into a smash book. Letters, notes, pictures your kid colored for you, trinkets, the instruction sheet on how to use your voodoo doll … SMASH it all in this book!

Many of you remember my first attempt at a smash book. Everything from that box under the bed (I know you all have one) was smashed into this book and tied with a ribbon to keep it closed!

 

Now for the second smash book, I just completed. This one went fast! I kept it to just extra wedding photo memories and a few cards. I was prepared with supplies (tape, glue, stickers, colorful papers, glitter glue, etc.) and I have a convenient little paper cutter! So this is what I started with…

 

I purchased my original smash books from Amazon when they were having a massive sale. (I got three.) I just went back and looked at them, and they are a bit more expensive. You can use ANY scrapbook, art book, even a regular book! My mom found an old book with the title “Kim” and sent it to me. I will be doing some smashing with that book as well. Look on Pinterest for additional ideas. I have mad love for Pinterest!

And the final product looks like this!

 

It’s definitely my style. I like creating messy ‘look’ books! It fits my life perfectly. The best part is when you feel low, take out your smash book and remember what makes you happy!

Live your best life!

img_0581~Kim

How Do I Record My Medical History?


Since I am back to searching for a new primary doctor, I am revisiting these steps. I need to update all of my medical records. I thought I’d share my outline with you. I hope it is helpful.


You are responsible for your medical history. I always carry a list with me. When I get to an appointment, my memory ceases to be present! This list ensures any information requested of me is available.

What to Include:

  • Name and Personal Information
  • Medical Providers
  • Medical Conditions
  • Illnesses and Surgeries
  • In Patient Hospital Stays
  • Emergency Room Visits 
  • Medications
  • Allergies
  • Medication History  

There may be a more appealing way to do this, but at least this is a quick way to organize medical notes to bring with you to every medical appointment you have, including dental appointments!

IMG_4264

So let’s go over what is most important for you to carry with you, in your purse or on your person at all times. Then you decide if you want to put this information on your phone, in a computer file you can print out and carry with you or merely handwrite this information out. Whatever works best for you!

Your Name and Personal Information. Date of birth and street address, with a phone number and emergency contact. Simple!

Medical Providers; their business addresses and phone numbers. Do this for EVERY physician, specialist, therapist, and dentist you currently see. Get that information down.

Medical Conditions you have been diagnosed with! List them.

Illnesses and Surgeries. Do a timeline for illnesses and surgeries. Just get the month and the year down for the medical event.

In-Patient hospital stays. Remember as best you can the tests and procedures you had done and include them.

Emergency Room Visits. Listing E.R. visits are optional if you follow up immediately with your doctor. The testing completed during the visit should be noted.

Medications. List your current medications, supplements, and PRN (as needed) medications.

Allergies. List them.

Medication History. Try to remember medications you have taken, the medication dosages, the effect this medication had on you and why it was discontinued.

Much of this information you can request from medical records and your pharmacy. Just give them a call. I have found the medical records personnel to be very helpful in sending me what I need. One exception, they do not go back farther than seven years. Just like taxes, medical records older than seven years are destroyed, so, get working on this!

Just follow this outline and remember to carry this with you at all times! This is part of excelling at being a responsible patient. And it is worth every minute you work on this because when the nurse or doctor asks you a question all you need to do is hand them your list.

Make copies so they can keep the list you hand them.

Take charge of your health and live your best life!

IMG_0250~Kim

The Nightmare Hospital Stay

I was hospitalized back in late September for pneumonia. I wrote about my stay being a nightmare. In fact, it affected me so much I could not discuss what had happened. I think I am finally ready to write about what happened.

I was treated well in the emergency room after I arrived on a Sunday night. I was admitted with chest pain and shortness of breath. I was taken immediately back to an open room and given morphine, and baby aspirin to chew. After an MRI, I was given fentanyl. I was told they would need to admit me as I had a bad case of pneumonia.

Then I was moved to a hospital room, and things went downhill from there…

I was put on the 5th floor first, the cardiology unit. I was hooked up to a heart monitor and within the first fifteen minutes, I was approached by the attending doctor who asked me if I would be willing to have an ultrasound performed by doctors who were learning to detect pneumonia through its use. I thought I should accept so they could learn. I believed an ultrasound was less invasive and by far a better option for claustrophobic patients (like me) than an MRI.

I was chatting happily with my nurse when my attending doctor walked back in with four other doctors and an ultrasound machine. By the time all five of them had pushed the ultrasound around on my back, I was in incredible pain! As they left, I told my nurse I was going to be sick! The pain had come on so strong, and so fast all I could do was throw-up and cry! My nurse asked me what was wrong with me? (I never put it together, the ultrasound had triggered a severe fibro flare.) I told my nurse I was a chronic pain patient and would need to be treated. I pleaded with him to contact my primary care doctor. He walked out the door to talk to two other nurses who were sitting at a desk facing a window that looked directly into my room.

I could hear him mumbling something to the two female nurses. I heard “drug seeking…” and for the next 20 minutes as I sat in the room crying and throwing up as they discussed what they had done that weekend. (It was now Monday.) They laughed a lot.

My Mom called, all I could do is cry and say ‘pain.’ I held the phone up, and my nurse came in, I managed to tell him to talk to my mom. I listened to him calm down my mother. Brush her off. But she didn’t stop, she called my husband and told him about the troubling state I was in. He told her he was on his way.

I was moved to the 4th floor. My husband didn’t know where to find me and had to search. I don’t know to this day what unit I was on. I just knew it was the 4th floor. I was hooked up to IV antibiotics and told by the attending physician I would need to see a pain doctor, he wouldn’t be in until after 5 the following day. The nurse brought me two Tylenol and disappeared. My fever was raging, I was dry heaving now. The two, unit nurses were in another patients room for 3 1/2 hours. I saw no one. Then my assigned nurse walked in to write something on my chart. She flippantly asked how I was? I told her to get out of my room. She obliged.

My husband arrived. He took my temperature and started applying cold washcloths to my head. I was burning up at 102.9 degrees. I was adamant that ‘they’ were trying to kill me. He had brought some medication with him, extra-strength Tylenol PM and my regular daily medication but no pain medications. We told no one. He stayed with me through my delirium. He pulled out a sleeper chair and placed it in front of my bed so no one could reach me without going through him. There were a few disagreements between my husband and the nurse. It stormed all night long.

I don’t remember much else than pain and the storm raging outside. I knew my husband was there and finally felt safe. 

After a quick chat with the pain doctor on Tuesday evening, he ordered oxycontin and was gone. It only took about ten minutes until I was given the oxycontin. I immediately felt the pain lift after the first dose of the pain medication. I had a restful night sleep and the next day demanded to be released.

My room was never cleaned. My bedding was never changed. I was never given the option to change my hospital gown. I was covered in vomit and sweat.

I left that hospital on Wednesday, vowing to never return.

Since that stay, I found The Chronic Pain Disease and Palliative Care Forms. I have made them available on my site. These forms will ensure we will continue to be treated for our chronic pain while we are hospital patients. Print out your form!

~Kim

Engage.

I made soup! I made soup. Cabbage roll soup. It is delicious and freezes up in smaller portions very well … the point is, I am trying to re-engage in life. Healing from pneumonia that I have takes weeks, sometimes months. This virus has caused my fibromyalgia to flare with a vengeance. The fatigue itself is overwhelming. But there is more to this then just healing from pneumonia, I need to recover mentally from the treatment I received while I was hospitalized.

I entered the Emergency Room on Sunday the 16th of September. (I have been a patient in this hospital over a dozen times; in-patient, I was not really worried as I believed I would receive adequate care.) I was having chest pains and a hard time breathing. I was instantly taken to a room with a crash cart! There were 4 to 6 nurses and technicians with me at once! My clothes were removed, a monitor was hooked up to my heart while an IV was started and blood was taken. The doctor appeared immediately. Morphine was given, and baby aspirin was given to me to chew. I was put on oxygen and wheeled into a different room for an MRI and brought back to my emergency room and given Fentanyl. More blood was taken, and my vitals were beginning to return to normal, but my fever remained very high. I had pneumonia. A nasty case according to the emergency room doctor who said he would be admitting me into the hospital…

Everything went wrong once I was moved to a hospital room. Everything. I was released three days later. It was so traumatizing I cannot write about it to this day… to heal, mentally and physically, I need to put my memories about this hospital stay in a box and close the lid for now. I did send in a survey that was sent to me from the hospital. I filled it out truthfully, painfully, as the nightmares have still not ceased.

In time, I will write my story when my body heals, and my mind can deal with what I went through, this is not that time. 

I have received stories from women with all sorts of chronic illnesses, reading about their very own hospital horror stories. They are brave and strong and wrote about their experience. They had the guts to send their stories to me. I am disgusted and angry at the horrific treatment they suffered through.

What do I do now? 

How do I handle this information?

I want to make sure these horrors never happen to anyone again… I want these women to have their stories heard! I also need to work on a solution. I need to figure out how to ensure patients are listened to and their “rights” to a pain-free hospital stay are upheld! I have been going over story after story… what would make a difference?

I think I have an idea…

The introduction of Palliative Care Medicine Plans for all chronically ill patients:

Screen Shot 2018-09-30 at 11.26.34 AM

This is my new project. My goal will be to provide access to these type of care plans for those who need them. I will not stop until I have these types of informational packets ready for anyone who needs one. This will take some time, but it will become a reality.

 

~Kim

The Chronic Illness Hell Flare.

“I will take charge of my illness it cannot be in charge of me.”

Before we begin, can I just explain how much I hate going to the doctor? I mean, getting ready? (Showering is hard but who wants to be the ‘funky’ patient?) The questions! When was your last period? Yes, the question they ask you every damn time, and you can NOT remember! Could you be pregnant? Well, what are the chances of immaculate conception? The enticing but gross magazines. Even though you want to lose yourself in one of those bad boys all you see is “GERMS!”

So back to my initial statement, “I will take charge of my illness it cannot be in charge of me.” I realize this is now bullshit. Because it has me by the rear and is shaking me like the 70’s commercial for shake N bake “…and I helped!”  (Remember that sweet little child in the commercial who helped? If you don’t, I can’t help you understand.) I am not saying, you can ‘control’ this chronic illness at all times, but I am saying you can take charge by coming up with a plan.

Taking charge (in this case) of a flare that has come out of nowhere and I really don’t even know if it is a flare or if an alien really did succeed in taking over my body… ‘taking charge’ means any damn way we can think of! I currently put out an S.O.S. to my doctor. (Did I mentioned how much I hate going to the doctor?) Yes-I-Did! And I LIKE my doc! But I will do whatever she requests if she will just call!!!

My trip to the chronic illness hell flare is called “My FM Day.” I named it. Notice the positive indication of calling it a ‘day’ instead of three days, or a week, or a month? Just stay with me, I know I sound like a crazy person right now.  There is nothing positive about having a flare. I let others know by stating I am having an “FM Day” so I do not have to verbally abuse them.  Those who care to know more will ask. Those who understand will not need to ask and will retreat. So, take a moment and name your ‘hell’ day, week, or month. (Please inform your loved ones of said name.)

  • Got a name?
  • Now get a box, bag or suitcase.
  • And gathered supplies for…

“My [insert hell flare name] Day”

  • Adult coloring books and colored pencils.
  • DVDs.
  • Netflix.
  • Amazon Prime Video.
  • Zentangle workbooks and gel pens.
  • Sketchbooks.
  • Journals.
  • Crossword Puzzle Books.
  • Playing Cards.
  • etc.

There will be rescue medications we will have on hand for flares. At times, we will have an S.O.S. call into our doctor. There will be soft PJs and lots of pillows on the bed. Don’t text! Don’t write letters! Talk as little as possible because you will not have nice things to say! Seclude yourself as much as possible but when the flare is over, it is over. Taking charge means we get through IT however we need to!

We will get through this!

img_1722~Kim

Nothing More.

I am a blogger. A simple blogger that happens to have fibromyalgia and a few of its cronies. I blog about chronic illnesses, mostly fibromyalgia. Sometimes a few additional “surprise!” pieces come together and grace this blog. But. I am a blogger. I just want to blog. I have things to say. I have “opinions.”

I run a Facebook support group. A group of women who have come together to question, answer and share about anything really. If you have an issue, we will do our best to help. Other strange things that come up are discussed. Basically, nothing is off topic. It reminds me of a quilting bee, each member presents a handmade square, and when we start sewing these beautiful squares together, we have a magically woven quilt of beautiful stories and tales. We are a part of something! I am an admin of a wonderful group of women who make my day, every day.

I also run a page on Facebook. I repost my blogs on that page as some find it too difficult to find my blog on WordPress. There is nothing wrong with that. Who isn’t tech savvy? Me. (I surprise myself most days!) If I can make someone’s day easier by merely posting my blog in two formats, then that is what I will do. I run a facebook page for my blog posts. That is all.

It got crazy for me a bit. I said “yes” when I should’ve said “no.” I signed up when I should’ve hit delete! No one’s fault but my own… my responsibility to make things right again… I have and I did.

I am a blogger, nothing more.

IMG_5013

 

B&W, Seven Days Photo Challenge, 6&7

I was tagged by Jo, at Life in the Spectrum, to complete the seven days, black and white photo challenge! This is a new blog for Jo, (The Momentum of MoJo). It is wonderful, please check it out.

The rules are straightforward. Seven days. Seven black and white photos of your life. No people. No explanation. Challenge someone new each day.

Day #6 and day #7 I am going to include in this post. The 4th of July is upon us, so I will not challenge any more bloggers and instead wish you all a restful, peaceful, (except for fireworks – see a good show) happy 4th of July! Here are my last two pictures, I hope you enjoy!

Day #6

IMG_2640

Day #7, final picture:

IMG_4442

Thanks for the challenge, Jo!

~Kim

B&W, Seven Day Photo Challenge! #1

I was tagged by Jo, at Life in the Spectrum, to complete the seven days, black and white photo challenge! This is a new blog for Jo, (The Momentum of MoJo). It is wonderful, please check it out.

The rules are straightforward. Seven days. Seven black and white photos of your life. No people. No explanation. Challenge someone new each day.

Day #1. I (tag) challenge …  The Woman, The Kitsukori Life … my friend “Kit” who teaches me about a brave heart and beauty of the struggle in life.

IMG_2647

~Kim

Happy Father’s Day to One of the Best!

A Man who grew up with no running water, no electricity, or heat. Now walking around in the age of computers and cellphones… I remember the day he brought home a “microwave” for my mother. All of us kids would watch that big, heavy, electric box cook as my mom would yell at us not to look at it for fear we’d go blind.

My dad was interviewed about his ‘roots’ and ended up on a YouTube special. Grab a cuppa, relax for 7 minutes, and have a peek into his boyhood family home that we have restored and still own today!

“A Place Called Home”

 

I love you, Dad!!!

FullSizeRender 87 Me and my Dad! (1995)

You Must Deconstruct to Reconstruct Your Life!

 

14563552_10153802747216604_7570582689605128241_n

I use to wonder if I would die from this Fibromyalgia Syndrome I have? Fibromyalgia in itself is not an autoimmune disease. An autoimmune disease is when your immune system attacks your healthy cells by mistake, you suffer from inflammation and chronic pain. Some autoimmune conditions even cause death. Fibromyalgia is not this. Fibromyalgia is considered a lifelong central nervous system disorder. It is chronic meaning you will have it for the rest of your life. You live with the pain and the co-existing conditions, but it will probably not kill you. In fact, the number one killer of people with fibromyalgia is suicide.

I have had fibromyalgia since 1998. I was a passenger in a car accident. I experience chronic pain, chronic fatigue, insomnia, clinical depression, post-concussion headaches, severe anxiety, cognitive impairments and digestive issues just about every day of my life since that car accident. Who wouldn’t feel like ending the pain? Some days suicide seems like the right choice. Once you’ve made up your mind, these irrational thoughts become rational. You have decided on a plan and are damn proud of it. Relief washes over you. You feel happy! Finally, you feel like you are in control! But up until now, luckily, something always stops you…

Honestly, I don’t want your pity, your medical advice, or your employment advice. If I hear; ‘get out of your own head,’ ‘I know a person who recovered from fibromyalgia,’ or ‘just volunteer, you’ll feel better’ one more time I swear I will scream! But I do. I hear those bits of advice frequently. I hear these things from people, I thought, knew what I was going through. Obviously not. 

By the way, people expect volunteers to show up! I don’t even know if I’ll be able to put together a full sentence on any given day let alone keep a promise to volunteer for a specific frame of time…

I have arrived at a place in my life where I just don’t give a damn what you think because I have to live in this body, not you. You have no idea what I have had to endure until you have walked a mile in my shoes, which I doubt you could stand for 10 minutes.

I read about a man who has fibromyalgia talk about deconstructing your life to reassemble it in a way that addresses your limitations. I have never read a better description of what a person with fibromyalgia has to complete to live some resemblance of a normal life. There are chemical changes in a person’s fibromyalgia brain. These chemicals tell the brain to fire random pain signals as we can’t maintain a feeling of well-being. Our bodies are kept in a constant ‘fight, flight, or freeze’ mode. This results in on-going pain, cognitive impairments, weaker immunity, digestive issues, poor sleep, low energy, and the list goes on… The introspection it takes to deconstruct, then reconstruct your life is painful and takes time. But you do it, you face it. You have to address this chronic disease and your very real limitations because of it.

In the end, people in your life do not deserve to be collateral damage. So, after a few years, you stop with all the doctors, all the tests, all the programs, and all the alternative treatments. You start putting together what works for you. No one can do it for you! I can’t, your mother can’t, your partner can’t. If you are expecting them to help you in this process, they just are not equipped to do so. Eventually, you will stop reporting your daily hurdles to everyone around you. You will get in the right frame of mind, and you will just begin. The double-edged sword that comes with a chronic illness is you don’t want advice, but you get it. No one can help you, even though you want them to.

Finally, my advice to you! (If you want it…) Get professional mental health help, this journey of deconstructing so you can reconstruct is no joke. Join a support group, find one that suits your needs. Find something, anything that you enjoy but works the brain. Adult coloring, drawing, crocheting, reading, crossword puzzles, jigsaw puzzles, go to YouTube and learn something. (I’m still trying to learn to crochet left-handed!) Your process for the rest is all up to you. My hope for you is that you are mentally prepared and supported throughout your journey with fibromyalgia.

Live your best life!

IMG_0250~Kim

 

Let’s Talk Smash Books!

What is a Smash Book? It is merely a scrapbook that you fill up with all the things that are in that box, under your bed, filled with notes, photos, and cards! The precious things that are important to you.

The beauty of a Smash Book is there are no rules! I am not a ‘gifted’ scrapbooker! I have the attention span of a mouse! So, all I did was cut and paste and smash everything I had onto the pages in this book. And I tied a bright, happy polka-dotted ribbon around it to keep it closed!!! Smash it in there! No rules.

The purpose of my Smash Book was explicitly for use in my fibro toolbox. Things that brighten my mood and remind me who I am when I reach the lowest depth of a pain flare or a depression flare are in this book to encourage me to just hold on! I will get through this flare, and I will return to these things that make me happy.

I will list the items that you may find helpful to make your very own Smash Book. I  purchased all of my supplies from Amazon as I find them to be ‘cost-friendly’ with many alternatives! Here are the items I chose. Go to Amazon, Wal-Mart, or a store of your liking and select items you like! Make up your very own Smash Book.

What will your Smash Book look like?

Screen Shot 2018-06-13 at 11.39.23 AM

Screen Shot 2018-06-13 at 11.43.26 AM

Screen Shot 2018-06-13 at 11.41.39 AM

Screen Shot 2018-06-13 at 11.46.20 AM

A scrapbook, colored papers, tape, glue, stickers… you are all set!

Smash!!!

~Kim

Fibro Toolbox

 

Dear Future Me …

May 2018

Dear Future Me,

You will be reading this when you turn 70, in 2037. You will have had fibromyalgia for 40 years. Maybe you will be cured, perhaps not. Either way, I am writing so you remember your time in 2018. How you searched and fought to live your best life with this chronic disease that is fibromyalgia.

As I write this in 2018, I am 50 years old. I have accomplished many things… I thought my life would be very different but then a chronic illness and its dastardly friends showed up and took my home and my livelihood in a matter of a few short years. But I am handling it. I learned to live with daily pain. I managed to get married. I started a support group and a blog. I published my first book, never thought I could ever do that.

We had some hard times too. We lost brother Kory in 2003. Although my marriage was celebrated in 2004, we went through a breakdown in family communication. There were misunderstandings right around 2011. Then there was the pancreatitis scare. So many surgeries and so many lost memories. We beat it, but that is a time I still grieve over. I can’t make what happened any better because I can’t recall the majority of two whole years. I hope you have figured out a way to repair those relationships. I have lost my way at this point. Letters and apologies did not work. I must have done something awful… did you figure out what it was?

I suppose we have lost more family members by the time you read this letter in 2037. Mom and Dad will be gone. Aunties and uncles, even some cousins will be gone. And the next generation should be well on their way towards taking over our family lake home; StoweAway. I wonder if they and their children will realize all that it took for us to make it what it is? A safe place for family and friends to gather and enjoy the company of one another. I hope you have made sure they know how special StoweAway is. How much work it takes to maintain this property. How many meetings, we five original board members held, to ensure the property would remain safely in the family. I believe you will ensure they are well versed in what it takes.

I am hoping this letter finds you and Jeff living the RV life full-time. We are working so hard right now in 2018 to make this happen. Remember all the classes we took about financial markets and trading platforms? Jeff quit his job in 2017 and started driving fulltime for Uber and Lyft. It was a jump into the unknown! We were so scared. It is working though. It was frightening in the beginning, but we knew this was the only way we would become mobile, making our dream of travel come true! All the planning, research, trade shows, classes, and textbooks! I hope you smile now as you are reading this. I hope you are smiling because you ARE living the RV life, Jeff and I are trying so desperately to get to.

I hope your pain has subsided. I hope you still look at our hubby and tell him you love him, every single day. I hope you still find laughter in each and every day and that you finally feel like you deserve to be happy. Because you do. You never gave up! You fought very hard from the beginning, then you found acceptance and did the best you could for you, your husband, and all those who came and went in our lives. You fought a good fight! Yes, sometimes it was just minute by minute, but you did it. If you are reading this letter, you made it! I hope you are wise and witty! I want you to lead a life of love, peace, and joy in your heart.

Happy 70th birthday, Kim!

From me, 2018.