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.

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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!

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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

Adjust Your Attitude

We will continue with the Six Healthy Habits to develop to live your life successfully with Fibromyalgia.

We covered #1. Know Thyself {Know Thyself. }

Today we will look at #2. Adjust Your Attitude.

As a reminder:

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To learn to Adjust Your Attitude, you must have taken the time to allow the grieving process to run its course. You are no longer the person you once were, your life is not what it once was. You must say goodbye and move into a period that allows you to adjust your attitude.

Adjusting your attitude can be exciting and very positive! Who is this new you as you begin a new life? What are your hobbies, interests, and goals? What are your interests within your limitations? What new things do you want to try? Go after these things and find some joy in your life!

I reached an honesty about my life, it was not the one that I had hoped for but it was still a life to be lived. I did grieve for all that was lost. Then, I realized I was getting a shot at a whole new life! A second time around. Who can say they lived two lifetimes in the one we were given? You can. I can.

I found that hobbies I had enjoyed now held a promise of future purpose. Some dreams I had were now capable of becoming reality. I was beginning to like this new, gentler me. I was gentler, yet somehow so much stronger! I realized I was actually hopeful as I started this journey with a new attitude.

Adjust your Attitude.

IMG_3383~Kim

Five Foot Two.

I watched Lady Gaga’s documentary, tonight.

She is very happy with her career at the moment, not her love life. She has a masseuse for when she cries in pain and a chiropractor for her hip. A nurse to give her medications, and a gaggle of Gaga helpers. I honestly do not know if she can dress herself? (It’s OK, she has helpers for that too.) Yes, she has pain, she probably has fibromyalgia but it was never mentioned in the film. She did say she felt bad for people who had pain like she does. She felt bad because they were poor and did not have the kind of money that she has to hire help.  She said she couldn’t do it on her own. (Big fear factor there.) We were blessed with a Gaga boob shot poolside and a literal shot in her ass cheek before she was to take the stage. She is a bit of a Diva (who isn’t these days?)

Her agenda was made clear in the first two minutes this documentary, The Joanne (Deluxe) Album was going to sell millions and she was going to make sure. She said she would do whatever it took, well, checkmark! The last sentence of the documentary, “A Million Reasons, from the Joanne (Deluxe) Album, just hit a million sold.”

Well done. I don’t have much more to say… except stop fighting with Madonna.

Listen, Lady Gaga is talented, she has a killer voice. I like her music. She was probably born to be a star and has probably worked very hard to reach her Gaga goals. I’m happy for her. I wish her success. I hope she finds a new love interest and has those babies while she tours the country! (Her dream, not mine.)

This documentary was a promotional filming to get her ‘new sound’ out to her fans. It was not about her chronic pain issues but a lifestyle lived in excess with access to anything she will ever need.

I’m still a fan, a bit disillusioned, but I will still listen to her music.

IMG_3178 2~Kim

Get Gaga Ready, Put on Your Poker Face.

Yes, the media released Lady Gaga’s announcement that she has been diagnosed with fibromyalgia. The millionaire pop culture performer has fibromyalgia. If Lady Gaga can be up on that stage, dancing and singing, so can we! Right? Well, get ready to be compared to fibromyalgia’s new face because that is who you are now up against.

What did Magic Johnson do for the HIV population? He ‘normalized’ this horrific, life ending, disease.  He made it seem possible to lead a full life while continuing his professional persona as a guy who was ‘dealing’ and living life with HIV. We dropped our fear of this deadly epidemic because an LA Lakers basketball player seemed to be handling his diagnosis with ease. The number of people contracting this virus skyrocketed. As did the number of death related AID’s cases.

These are public figures putting a face to the name of diseases we have been too ashamed at times to admit we have. So, on one hand, the stigma will lift, on the other hand, we will be compared to these well-known public figures.

Why can’t I deal with my fibromyalgia, like Lady Gaga???

First of all, I am not a millionaire. I’m border-line poor. The medical expenses that come with caring for the symptoms of this disease are insurmountable at times.  I can’t afford to have fibromyalgia. Lady Gaga can afford it.

Second, I do not have a ‘staff’ to help me deal with my fibromyalgia. I do not have a manager, an assistant, a personal chef, a maid, a physical therapist, a massage therapist, an acupuncturist, a personal nurse and doctor, all at my beck and call. I can’t afford a team of people to care for me. Lady Gaga can.

Get ready Fibro Warriors, we thought we were misunderstood before!?!? We now will be compared to a woman, who has no financial issues, paving the road for us … while we search for a detour!

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In conclusion, I want to apologize to all of those people whose lives have been touched by the HIV/AIDs epidemic. I, too, believed it was possible to live like “Magic” with this deadly disease. I was so wrong. I am so very sorry.

IMG_3343~Kim

 

Restless Legs Syndrome

Those legs … those damn restless legs. Those of you who have Restless Legs Syndrome know what I’m talking about. Those who don’t, it is the feeling of needing to move your legs so badly that you cannot sleep, you can not relax. You must get up and move while praying you don’t fall over because your legs are like jelly filled donuts. Some experience a feeling of heaviness in their legs, others pins and needles, some creepy crawlies, like bugs in their legs. How ever you experience restless legs, you will do anything to make it stop.

Let me help you out! I have a few tricks, you decide what to try. Maybe it will work for you, maybe not, but anything is worth a try to ward off Restless Legs Syndrome!

Quinine and Magnesium. I drink one glass of Tonic water with 10 drops of magnesium in it every day.

Clay Packs. These can be heated or frozen and are reusable. When you are at an event, place the clay pack in the windshield area of your car, the sun will warm them and have them ready for use. Great for traveling as well as regular use at home.

Weighted blanket. These blanket were originally used for individuals with Autism. Well, welcome the weighted blanket for suppressing your restless legs! I have a small 8lb. lap blanket. I use in conjunction with my clay heating packs after I beat them with my hand held massager!

Hand held massager. I put mine on a setting that pounds my legs hard! Extremely helpful when your legs are acting up!

Epson Salt Baths. Add about a cup in your bath water, not only relieves your legs but your other aches and pains as well. (I love to add a few drops of my favorite essential oils.)

Diffuser. I have a diffuser in almost every room of my house. I like a combination of peppermint, eucalyptus, and lavender. Not only does it help with allergies, but it is a very peaceful scent and aids in healthier sleep habits.

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I do take medication for Restless Leg Syndrome but I have found doing these types of things I mentioned above, prevent most severe episodes but not all. 

Finally, I clean in high heels. WARNING: Do not do this unless you are sure of your balance, I have taken some nasty spills! (See featured image above.) I give my legs a workout while I cook and clean. It is not the most comfortable, but if I am slowing down an episode of restless legs, it is well worth the effort.

IMG_3178 2 ~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 Mcdonalds, 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 for 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_3180~Kim

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