The Fibromyalgia Cure? OK, Let’s Talk About This…

There is a NEW cure for fibromyalgia plastered on FaceBook! Yep. They have done it! AGAIN! Another cure for us fibro sufferers, for crying out loud! It is about time!!!  (Really?) Well, let’s talk about this…

Here is the hook…

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Ok. There is a blood test called the FM/a to diagnose fibromyalgia. This is real. Your insurance, whatever that may be, will cover the cost of this blood test.

What does the FM/a test for? (Researcher-speak) This is a multi-biomarker-based test that analyzes your immune systems’ white blood cells’ chemokine and cytokine patterns. People with fibro have an irregular pattern regarding these proteins. 

What does the FM/a test for? (Kim-speak) This test measures the proteins in your body that increase when you are ill. These proteins increase your white blood cell count considerably to fight the likes of the flu, mono, infection, etc… These measurements should prove to be erratic if you have fibromyalgia.

Next, here is the theory ‘MOJO’ statement…

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The theory ‘MOJO’ statement is a promise to be admitted to their clinical trial if you test positive on the FM/a blood test.

(Researcher-speak) Take the FM/a test.

(Kim-speak) Do not rule out being tested for the FM/a test, just don’t be first in case its a deciding factor in the treatment you are allowed to receive! (This is not a one-size-fits-all illness!)

The result in this proposed theory will be a cure for the incurable… AND (drumroll!) they have the ONLY cure!

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Just what is this cure? It is the TB vaccine. Period. Will this work? I haven’t researched one case where it has worked. I have not studied one case where it has caused any harm. Go ahead and research the TB vaccine and see if you think it may hold promise for your ‘type’ of fibromyalgia. Go ahead and get the TB vaccine if you think it might work. Just ask your doctor to administer the TB vaccine. The cost is low, the vaccine is available. There is no need for such a cryptic message of a wonderous ‘cure!’ I trust YOU to make the best decision for YOU!

(Researcher-speak: More money…)

(Kim-speak: It’s a stupid $7 TB vaccine, get it if you want to!)

Always live your best life!

~Kim

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Hello? Is It Me You’re Looking For?

I’m back! My two-month blogging hiatus has expired, so let’s catch up!

Here we go!

Let’s get this out of the way; COVID-19. Hoarding, isolating, and assigning blame in the MOST fascinating ways. (Seriously?) Well, this has certainly been a fine example of how people behave in a crisis. I don’t think I’ve heard “fuck you” as many times as I have in the last 30 days. I don’t think I’ve ever run out of toilet paper in my adult life except in the previous 30 days. I don’t think I’ve ever observed such selfish, public behavior, disregarding the safety and health of others, as much as I’ve seen it in the last 30 days. I believe the squeaky wheel gets the oil. There are a lot of squeaky wheels in this world. Sadly.

What has been happening with me? Really not much! Here’s a little run down.

My time in seclusion… let’s see, practicing social distancing because of the coronavirus. We fight on…

Taxes. Well… the only certainty in this life is death and taxes. Who fights with their tax man and gets dropped? (Just me?) Damn. Taxes… at least we have until July 15th. A welcome reprieve, not to mention ample time to find a new tax dude.

We left Texas and traveled through New Mexico and into Arizona. Stayed in Arizona, locked down. Now I’m in Las Vegas, Nevada! Yes, quarantined, and socially responsible in (of all places), ‘Vegas!’ (Can you feel the agony in those typed words?)

Now, I must report, in my RV travels, I have met some fascinating people! Some nice, others not so much. I find the notion of ‘kindness’ nothing more than a relatively politically correct statement in most of the 55+ RV parks. I fully admit this may be mostly tied to the COVID-19 restrictions and flat out fear! Hoarding, isolating, disruptions in necessary daily rituals seem to lead to coarse attitudes. Hey, I get it!

Then again, I wonder if I really do get it?

I have been in self-imposed isolation for almost 20 years! When you have a chronic illness, this is necessary for your very survival. What has it been, 30 days in quarantine and people wig out. Really? I think I do not get that!

I’ve come back home to my blogging tribe. Here is where I find peace. I find support. I’ve missed you all! I’m so delighted to be back.

Always live your best life!

~Kim

Back to Basics

What is Fibromyalgia Syndrome?

That’s a loaded question! Each person experiences fibromyalgia differently… but, going back to basics, I will try my best to explain.

The nervous system of someone with ‘fibro’ looks like this;

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So, a person with fibro has an overactive nervous system.

You can read more about the nervous system: here.

Signals are being constantly sent to the brain that the body is in pain, the brain answers and we end up with this;

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Further reading about the effects on the brain: here.

So, the brain is very busy for a person with chronic pain from Fibromyalgia Syndrome. Then we add the cognitive dysfunction, known as fibro fog, that we deal with as fibro warriors.

This is a good description;

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(Image courtesy of Pixie.)

Further reading about fibro fog: here, and here.

So, the very basic explanation of Fibromyalgia Syndrome is this;

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(Image courtesy of Pixie.)

In-depth symptoms of fibro and accompanying conditions: here and here.

To sum up this post, it is OK to not fully understand fibro but NOT OK to think it is easily defined. Fibromyalgia is not a cookie-cutter illness. This is a real ‘syndrome’ (which means made up of many co-existing conditions) that is debilitating and extremely painful.

img_0456~Kim

Protecting the 1st Amendment OR Allowing Abusive Posts by WordPress Blogger?

I have something significant to ask you.

  • Should a person be allowed to write ‘how-to’ manuals about how to abuse women?
  • Should this person be allowed to publish these ‘how-to’ posts on a public blog?
  • Should this person be allowed to follow women bloggers who are writing about their escape from an abusive past?

WordPress believes this is a freedom of speech issue. I think this is definitely an issue! The issue is abusive behavior!!! Some behaviors, written or no, are flat out WRONG.


Read this excerpt…

“Anyone else who has also experienced rape, assault, abuse, stalking, or anything similar is likely screaming at the computer screen as much as I did when I read that myself. Admittedly, the support people probably were not prepared for the words I had to say, which, I’m proud to say, were righteously indignant but also respectful. But the reality is that we live in a society and a time where victims of crimes are often more afraid to report the crime than they are to live with it, and where there still is lacking a basic understanding of the psychology of trauma from the viewpoint of the victim.”

To read the full story, and it is unfolding RIGHT NOW with WordPress…

Click here, on Gwen’s site:

https://thekintsukuroilife.blog/2020/01/11/it-was-almost-the-end/


I hope you are as outraged as I am.

I have no more words.

img_0456~Kim

Kim Being Tom … Being Tom

I know! The title is confusing. My friend Tom (at Tom being Tom) has bestowed upon me the name of one of Santa’s eight reindeer! I am now known in some circles as Donner. Is Donner cool? I hope Donner is cool.

And I received an award! The Blogger Recognition Award! It really is an honor! The Rules… we are to ‘tell a tale’ of how we began blogging and give new bloggers a piece of advice! Then nominate UP TO 15 bloggers.

Thank you, Tom! If you haven’t, check out this gifted writer’s site! Tom Being Tom. I will accept this award and do my best! First here is a little example of Tom’s work;

“My advice? Copy everything you see here, post it somewhere else, and give me all due credit. You can call your blog, “Me Being Tom Being Tom.” Really, there will be no blog like it in the world, unless, of course, 12 of you do it, then there would be only 12 of them like it in the world.” -Tom at Tom Being Tom

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Here we go, I’ll begin with a little tale…

I was in a complete mental shut down. I had undergone seven surgeries in quick succession. My brain was mush! I could not put a sentence together. I could not think clearly. Could I write complete sentences? Could I think clearly enough to put down words on paper and have them make sense? I began to color… then journal… and then, BLOG. (The jury may still be out on the making sense part!)

It was a painstaking process. I had to re-learn how to think clearly. I had to process my thinking and put those thoughts into a format that would ultimately be a blog post. I found one mentor, then another! (Both will be nominated.) Then I began following a few blogs. I will never forget the feeling of communicating with people. I was writing! I was communicating! I was absolutely passionate about this ‘thing’ called a blog! From then on, I was hooked.

A piece of advice for new bloggers.

I’m a chronic illness blogger, so for those with personal blogs, I may have some advice! First and always, write for yourself. If no one else reads a post you’ve written, it doesn’t matter. Your blog will become a piece of your history. This will be a record of your life! Don’t worry about likes, follows, comments, or becoming a ‘brand.’ (A brand… really?) You may not be everyone’s cup of tea, and that’s OK! Your tribe is out there, and they will find you! So write your story!

(And probably don’t post every day because you become VERY difficult to follow…)

My nominees.

My mentors, who I’ve followed through thick and thin for years, are Wendy and Mer! These two women have always had my back! They have been encouraging my writing from the very start. I have learned much from these two women. I hope you will both accept this recognition award!

Wendy at Picnic With Ants

Mer at MerBear’s World

I would also like to nominate some of the very first bloggers I ever followed and continue to follow! I am still amazed by the quality blogs you four women put out! I thank each and every one of you! Please accept this recognition award.

Terri at Reclaiming Hope

Gwen at Beauty of Imperfection: The Kintsukuroi Life

Caz at Invisibly Me

Bella at Thoughts ‘n Life

My life is better because of these bloggers! There are many more bloggers I am proud to call ‘friend.’ Some of you do not ‘do’ awards; others will simply smile and nod… you are all my tribe!

img_0456~Kim

 

Three of My Cheaters to Fight Pain

If you know me, then you know I call things I use to assist me when I have painful flare; cheaters! I don’t know why. Here are three of my cheaters just for you! Consider it an early Christmas Gift…

1. Tommy Copper

Hello, Tommy Copper! Why haven’t I tried this before?!?! Well, I have tried ‘other’ copper products. But. Tommy Copper, the brand name, is a must! I got the back belt first but was so thrilled with the results I added the leg and arm sleeves! This product isn’t about compression, just get the copper cloth as close to your skin as possible. This means under your clothes. Start slow, a few hours a day and build. I felt relief within one minute after I put on the back brace. I had no back pain within seven days! I’m dead serious! (Yes, the pain comes back but to get an hour of relief, not to mention 8 to 10 hours in ONE DAY?!?! I’m sold!)

This product may not work for everyone! But for $20? It is worth a shot. The company states that these items are for those who are in pain but cannot ‘slow down’ to rest. Well, I got to put these on, rest, and run errands! Yahtzee! These come in black and also in (my favorite) camouflage! I put mine on, and I am sure I’m invisible, blending in with my surroundings!

2. Epson Salt

I just cannot stress the importance of soaking in Epson salt. Put a cup of the Epson salt into your bathwater. (At least soak your feet in Epson salt!) As I no longer have a bathtub at my disposal, I soak my feet in Epson Salt about three times a week. You can add essential oils! I did happen across Dr. Teal’s Epson salt, there are many kinds, infused with beautiful smelling essential oils. Get yourself some Epson Salt. It is so cheap and has such wonderful results! Calming, detoxifying, and great to do before trying to sleep.

3. Ibuprofen

I am not supposed to take NSAIDs (ibuprofen), but there are times that I do because recently, I was denied any access to my pain medication. (Yep. It happened, I knew it eventually would.) Hello, ibuprofen. When I was younger, in my early 20s, I suffered from bursitis in my right shoulder. Very painful! The doctor I was seeing told me I could take 800 mg of ibuprofen every six hours, and that was almost the equivalent of taking a pain pill. It works, folks.* Not great, but tamps down the stabbing, take your breath away, pain. Take your regular medication, supplement your pain management protocol with 800 mg of ibuprofen 2-3 times for one day. (Don’t do this for very long, maybe one to three days max.)

*Please check with your doctor before doing this. There are always risks and rewards with every medication you take! The pros and cons, according to your own body chemistry. I am NOT a doctor nor do I play one on TV! Talk to your medical professional.

Live your best life!

If you would like to read about 20 additional cheaters I use click here.

img_7612-2~Kim

The Search for an RV.

Ok, we are living in some pretty good digs right now. There is a fireplace! There is a lake and a grill and a fire pit. I’m certainly not complaining. All I want to make clear is that I am ready to have my own home again. Whatever I define as my home. That would be an RV!

There is an RV I like in Oregon, Texas, Pennsylvania, Iowa, and Arizona… now, what the heck do we do? Update. The Arizona one sold. What? One day on the RVTrader!!! Wow. That went quick. And there goes the one in Texas as well. I still have a total of seventeen RV’s on my saved list. Seventeen!

The decision to purchase a 5th wheel was fairly obvious soon after we began our search…at least I thought so until the buying process started. Eventually, you need to choose, and we decided to hunt for a 5th wheel! Then we heard some of these 5th wheels come with a garage! A garage translates into ‘office space’ to me as well as a place to hold our CanAm Spyder once we are travel bound.

A 5th wheel toy hauler is for us!

There are different ‘makes.’ There are various ‘models.’ There are different lengths, colors, and floor plans! There is the Cadillac of RVs then there are the humbled down versions. We tried to pick something in the middle.

We chose the Keystone brand as we like their track record in the warranty department. We also like a number of their models. This being our first RV purchase, we want to be somewhere in the middle of the price point of the RV ‘sales’ when we choose our first home on wheels! Not too long, not too short! Not too expensive, not too cheap! We have to live in this, so it’s got to have a little appeal and adequate storage. (Whatever adequate means at this point.)

We have four contenders. Starting with the high-end Raptor (nice but scary expensive). Then continuing in the price point spread; the Fuzion, Impact, and Carbon. One of these will be our future home! We like the Fuzion a lot. Then, looking at the most bang for our buck, we have decided to go after an Impact.

First things first, after deciphering the weight of what we’d need to pull a 40 foot, 5th wheel, we needed to purchase a 3/4 ton, diesel pickup truck. We decided on a low mileage 2015 Chevy Silverado, 3500. We bought this little beauty last Saturday!

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We will pick up the truck today. The ‘Anderson Hitch’ (Really cool, google it!) arrives this afternoon. Next, it’s time to decide on a toy hauler… and make that purchase!

Stay tuned!

img_1722~Kim

Fibromyalgia #NoChoice

(Feel free to share!)

The fact is no one has a choice about receiving a chronic illness diagnosis. You just get it.

I will never forget the day a doctor looked at me and said, “You have Fibromyalgia Syndrome.”

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#fibro #nochoice

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The results are in! My review of the “Med Management” Bag.

I unboxed this bag on July 30th. I was mailed this bag at no cost and asked to review it. I have worked with this bag for a little over two weeks. I will tell you this is a very nice management tool and I highly recommend it. I won’t beat around the bush if you can afford the 50 dollars, get this “Med Management” bag right now at http://vivalife.care.com.

Preparation

I started off purchasing pill organizers at Walgreen’s pharmacy for 99 cents apiece. I bought four and color-coded them. I take medications four times a day. I picked up a composition book as well for 50 cents. A composition book is a tool I use to take notes to prepare for medical appointments as well as record any issues I may be having with medication. The bag comes with file holders and tags. Keep your medical information; past and present in these divided files. Organize them as they make sense to you. I always carry a list of medications I am currently taking, a list of past medications and what they did or did not do for me. Medical procedures I have undergone and the doctors names and addresses that I see. I like to keep my pharmacy information and insurance cards with me too.

Design

This “Med Management” bag is not cumbersome! Medications bottles of all sizes fit, and you can carry as much paperwork with you as you need, your iPad will fit in this bag without issue. The design of this bag is smart.

Con, or is it a Pro?

The only downside that I encountered was the color! I like to carry my medications ‘incognito,’ but this bag stands out brightly! Now having said that, this is also a pro! People will notice you are carrying this bag. They will notice if you ‘forget’ your bag. I believe when walking in for an appointment, it seemed that I may have been taken a bit more seriously? Yes. A lot more seriously.

Last Word

Only you know if this bag will fit your lifestyle. The price is steep. I doubt you’ll be disappointed. I think this is worth its price! Two thumbs up for the “Med Management” bag.

 

 

img_1453~Kim

Zoolon Hub, #1 Indy Artist in the UK.

Remember when I asked you if you’d met Zoolon? Well, George is going to the top of the charts! I am so proud. Read about George at Zoolon Hub!

 

SAYING ‘THANK YOU’ TO THE DEVIL — Zoolon Hub

https://bandcamp.com/EmbeddedPlayer/v=2/album=1987542439/size=large/bgcol=ffffff/linkcol=0687f5/tracklist=false/artwork=small/

(Me caught on camera making a serious point when talking with The Devil) I got the notification that read, ‘Chart-Topping Artists – Discover this month’s chart-topping alternative artists now.’ It got better because one of them was me. I’m number 1 on ReverbNation’s UK Chart and have been for a week or so (19th on […]

via SAYING ‘THANK YOU’ TO THE DEVIL — Zoolon Hub

The Chronically Hopeful Award

Brigid over at Watching the Daisies  was kind enough to nominate me for the Chronically Hopeful Award. There is no way I can express what Brigid means to me, I will let her own words tell you who she is and have to leave it at that.

Brigid P. Gallagher is a retired natural medicines therapist, passionate organic gardener, and author of “Watching the Daisies- Life lessons on the Importance of Slow,” a holistic memoir dedicated to the art of mindfulness and healing from a debilitating illness.

The Chronically Hopeful Award has been created by Pamela, “to recognize the incredible people who blog about chronic illness, mental health, and disability.”

The rules:

  • Thank your nominator
  • Recognize Pamela from There Is Always Hope as the creator of this award and link her URL – https://pamelajessen.com
  • Use the Chronically Hopeful Award logo somewhere in your post
  • Copy these rules onto your post
  • Answer your nominator’s questions
  • Write 5-10 of your own questions (they don’t need to be illness-related)
  • Nominate 5-10 other chronic illness, mental illness, or disability bloggers
  • Comment on each of your nominees’ latest posts to tell them they have been nominated.

Brigid’s Questions for Me:

  1. What advice would you give to a new blogger?

Just write. Be real. Write about your day, your ideas, what you hope to achieve, what your dog did! Don’t worry about perfection. Don’t worry about followers. I know its tough to look at other peoples blogs and see the number of followers and the number of comments. But believe me, you will end up reblogging many of your old posts, probably yourself. Once you get the hang of the style of blogger you hope to become, you will go back an re-do your first few posts. (I PROMISE you… it’s true!) For now, write and visit other blogs! Comment and don’t expect anything back. Reach out to one or two bloggers for advice. A little mentorship never hurt anyone. Blogging should be a way of expressing yourself, some use it as a ‘platform,’ and that is not my kind of blogging. I like to feel a sense of accomplishment when I get done with a post. Period. End of story. 

2. How has blogging changed your life?

Oh my! I don’t know if I can count the ways. I adore blogging, and I live for the communication that I receive from it. The blogging community welcomed me, and I now have a sense of belonging to something much better than I could have ever dreamt of. I love my tribe!

3.  What is the biggest lesson you have learned about your own health condition, that you wish you had learned sooner?

 

The reality is that no matter what I learn and how much I move forward, there are still people in my life who do not care to move forward with me. My Fibromyalgia Syndrome is chronic, it is here to stay! I was caught off guard at how much this certainty has turned some against me. (No, I am not going to “beat” this one.) It doesn’t matter how much I fight back, there is never a winner. I have to say that is the biggest lesson, about living with a chronic illness, I have learned and definitely needed to.

4.  What hobbies do you enjoy?

Well, I like hobbies that are tangible. I like to write, so I wrote a book! The Shadow Boxers, Fighting Fibromyalgia, Your Personal Journal. This is an interactive journal and the first, ever, published on Amazon about Fibromyalgia Syndrome. I am so proud of that! I believe my book is a useful resource for anyone with fibro no matter where in life you are with your illness. My co-writer and I wanted to offer options, not opinions. It is definitely not a ‘how-to’ book.

5. What dreams do you still want to fulfill?

Well! (Remember that tangible thing I have going on with me.) I have always wanted to travel. I love it, but I thought once I got sick, that part of my life was over. The hubby and I have been working towards becoming mobile so we could start traveling fulltime in an RV. It is now happening! Our house goes on the market on August 1, and upon that sale, we are ready to purchase our rig and start off on a new adventure! Crazy cool. We can finally see the goalie, and it looks like it’s all net!

XXOO

Thank you, Brigid! I am truly honored to accept this award.

Now my nominees, and my five questions for them:

Caz at Invisibly Me

Wendi at Simply Chronically Ill

Mer at MerBear’s World

Wendy at Picnic With Ants

Karen at MS graceful…NOT!

  1. At what age were you were diagnosed?
  2. What were your first thoughts after you received this diagnosis?
  3. Do you think chronically ill people are expected to behave a certain way when they are in public?
  4. What is the biggest misconception about your illness?
  5. Have you seen any significant strides in the treatment for your illness? 

I’m looking forward to your answers. You have been given this award from me. I hope you have time to accept and answer the questions. Either way, you are phenomenal bloggers! I count myself lucky to have come across your site, more importantly, your friendship. All of you truly deserved to be recognized!

 

 

 

img_1129~Kim

Good Morning! Feelin’ Fibro?

What do mornings feel like when you wake up with a chronic pain disease like fibromyalgia? I was stumped when people would ask me how it “felt” to have fibromyalgia. “Not good?” Seriously, it is hard to explain. Some say like the flu, others like the flu with a sunburn. Some say it’s like being held under water while you have the flu… do you see a running theme here? I finally figured out three examples I can use to explain what it feels like to have fibromyalgia.

-Ever had the flu and been in bed for an entire week, getting up only to throw-up? Your body hurts!  It feels like the day after you get over the flu. Knowing it could get worse, could get better… you are just unsure and still hurting from a week in bed.

-Ever ran track? It feels like the day after the first practice of the season.

-Ever played basketball, football, or volleyball? It feels like the day after the first practice of the season.

Fibromyalgia is basically a nerve disorder. Overactive pain signals are coursing through your body, and your brain’s response alerts you to feel pain. You are in pain, every minute of every day, only the degree of pain changes. Along with the pain are fibromyalgia’s little pain pals that show up uninvited. Backaches, headaches, vertigo, fatigue, nausea, restless legs, depression, and oh so much more! It’s like a fierce fibro gang hell-bent on reminding you that you are a member!!

Here are a few of fibro’s pain pals:

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(~Pinterest)

So, a day with fibro begins in pain as you wake up you feel like you’ve spent all night not sleeping but thoroughly planning and cleaning your house for a fancy dinner party that you will be hosting! The invitations have gone out, the RSVP’s have rolled in, and you have a three-course meal to prepare for twelve people. You are beyond exhausted and yet, you have to put on your party clothes and host this shin-ding! Hence, your day begins with you feeling like the party guests will be arriving any minute and you are too exhausted to even shower. Now, get out of bed…

Good Morning… Feelin’ fibro?

Live your best life!

img_0992-4~Kim