Fibromyalgia and Combat Fatigue

mourning us

Another fibromyalgia crash day and I am learning to spot them coming a mile away, though doesn’t mean I can necessarily stop them.  Not having the space to fully engage in the arts on a daily basis, write, compose etc.., to be a full time artist, true calling, doesn’t help.

It is like being in a combat zone of sorts, not to in any way try to compare to a war zone, but you are dealing with issues that are chronic day in and day out, a range of issues because it is a syndrome.  You are having to deal with all this plus if you have others you are having to also care for, are in any way concerned about such as an elderly relative, adds to the stress.  If you have all this creativity you are bursting to get out, but now way to really fully express it, no steady, constant venue to do so, it just really creates a steady stream of stress.  Stress is a major trigger for Fibro and when that stress etc.. builds you can sense the negative feelings, pain, joint pain, osteocondritis hit you, sleep issues hit you.  Then the crash comes, the total fatigue meltdown and you have to sleep it off.  You feel like hell that whole day, not fun, not in the least.  Each day is one you have to stay on top of and be positive to the best of your abilities, push forward as best you can.  It would help if I did have a space, nice warm space to do all my creative work in 24/7, to be able to just write, sing, record etc.. with no distraction, just me and the Holy Trinity giving me the words, the music, maybe a great cohort or two as well.  Right now I have to figure out how to deal with the cards I have, the deck I have and also how to change it so I can have that space to be a full time artist and delegate what I know I need to delegate, still caring.  I have to meditate and pray on it and have faith it will come to pass very soon.

Fibromyalgia is a constant companion and I could set up a foundation, something like that, after all seems like everyone is setting up something, but honestly I get calls from charities, and stuff in the mail constantly and it annoys me beyond measure.  There are way too many charities, too many so called Non Profits, we actually need way fewer, not more, and much better managed with most of the funds going into charity and research.  I would rather find a national or global organization very efficient dedicated to Fibromyalgia assistance to those dealing with this, on many levels, fundraise for them, than try to stick society with another organization, add more people asking for more money for another cause.  

Love Me, My Fibro, & Sassy

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I realized that I very want a wonderful guy to share my life with, and I am hoping that my prayers are answered and that this wonderful person comes forward and that journey begins soon.  

However, embracing me means they also embrace my Fibromyalgia, which includes gluten sensitivity.  Fibromyalgia being a syndrome there is no magic singular bullet so to speak to make it go away.  It is a complex web of issues that one has to manage on a day to day basis and some days are pretty tough.  Travel is not an easy thing, and long distance travel, really tough.  The fibromyalgia is with me every day in some way and whoever is with me, shares my life, work with me will also be sharing this with me and all the frustrations, limitations of it to some extent, so they will have to be very patient and kind.  I am also certain that the Lord will bring me together with the right person who can and will be patient, and kind, understand this.  The other thing they will have to embrace is my sassy side, and boy to do I have one.  Mix Italian with being a Leo and naturally feisty and boy, that sassy will come out.   If I have to tell you, get off your tukkus, have a backbone, reach for the stars, I will.  By the same token when I feel you need a hug, a cuddle, I will also offer that as well.  I don’t do the submissive little lamb and always be diplomatic, say what you want to hear kind of thing, nah.  Forewarned is forearmed, that anyone who chooses to chart the course of life’s journey with me will have to embrace as part of that journey with me the fibromyalgia and my sassy side.  Hey, makes life interesting.  

Namaste, Shalom and Amen

 

Fibromyalgia Keeps Teaching

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The Journey That is Life.

Fibromyalgia is a syndrome and as any syndrome goes is not quite predictable, so when you make plans ahead of time you may find that those plans get put asunder.  Fibromyalgia changed my life, actually put me on the path I feel I was meant to be on, the arts and ministry in some way.  

It also keeps teaching me that the adage of best laid plans of mice and men etc… is true.  It also keeps teaching me over and over again that patience is not only a virtue, but a necessity, as is flexibility.  That doesn’t mean I can’t have goals,  a life vision all that, but it does mean that I have be flexible enough to allow for changes, last minute changes etc…  Often in life isn’t that the case?  You make plans, have it all set out, all laid out, and then boomerang.  However, it is important to be able to step back, and rather than get into a tizzy, let it go, or just adjust the plans.  If God, the universe etc… determines maybe that plan was not the best option, the way you laid it out, and you need to go back, nothing wrong with having to adjust it.  Doesn’t mean you have to scrap it.  You simply meditate, pray quietly, maybe in a place where there is nature, and you figure out how you do need to adjust it.  Adapting or changing plans, does not make you weak or a failure, but failing to do so or even consider it, makes you a stubborn baboon.  Today I was supposed to go to an event, Founder’s Day for the Sons and Daughters of Italy Petrosino Lodge, important day for the lodge, but I had a bad night, and crashed.   I could get all down about it, but that does nothing, so I have to let go and if I crash again tomorrow, miss another event I am supposed to go to, okay.  Monday I go see the doctor, get blood work done, as it is likely the thyroid, one of the issues the Fibro brings with it, my meds get adjusted and all is well again.  

At one point I was even going to close myself off from a relationship, even letting one in because of the Fibromyalgia, thinking that the person I have in mind to have a relationship with would not be keen on being with someone who deals with this syndrome and the annoying boomerangs that go with it.  Then I thought, no since I am very open social media about my syndrome and even in discussion about it, have been always, so the person is well aware of it, and if they come knocking looking for a relationship, then I would be wrong to close that door and I would not be giving them much credit as a person if I did, so when they are ready and come knocking, which I cross my fingers is soon, very soon, boldly and courageously they will know about it and we will get through the rough patches together.  I look forward to opening my heart etc.. to them and they to me fully and riding the rough waves together, including riptides.   Fibromyalgia may change plans etc…, but I can’t let it close me off to others.  

Namaste, Shalom and Amen

 

Fibromyalgia Can’t Knock Me Out

Can't Knock This Gal Out, No Way!!

Can’t Knock This Gal Out, No Way!!

Life is as Gump says a box of chocolates and you don’t know what you are going to get, on the one hand I have some really great stuff in my life, amazing people, my music, my writing and I had realized just how resilient I am, just how much of tough tukkus I am.  Anyone who has Fibromyalgia and Chronic Fatigue can tell you, it is not a fun journey and if you don’t have a strong persona and resilience, it can totally knock you out of life and living.

Recently, I have come to understand how strong I am, even when the body may rebel.   A very dear friend of mine has asked me to do PR for her, she is an emerging designer, and I also started, just this week working with a career coach.  As these two people have been giving me feedback on my life since having to go on SSDI and even reviewing thing leading up to the moment when the Fibro made a fixed schedule of any kind a NO, they have helped me realize the range of gifts and skill sets I have, and as I research, it dawns on me that though I stopped teaching and working in any traditional paid sense, I continued to work, grow etc… as a person, in my gifts as an artist, as a writer, and will continue to do so.  Life, like the rose has thorns, but when you have a strong will, and realize the only person who can ever hold you truly prisoner is you, with the help of great people in your life, who are supportive of your journey, you can break free and fly.  Not to say the Fibromyalgia is gone away or will magically disappear tomorrow, but I can still be a teacher, an artist and thrive, working through and around it.  It can at times knock me down a bit, make me dizzy, but it can’t, unless I let it, know me out.  

The same goes for life itself.  We often will say that others are imprisoning us or holding us down etc…, but in reality we are doing it to ourselves with our fears, self doubts etc… and unless we address that and release it, we will stay in our prisons that we have created, due to that and even false sense of duty and even sometimes false sense of loyalty.  Loyalty and all that is a great thing, to an extent yes we should be loyal to others, but loyalty can still be given by appreciating what was done for us, and walking away in Agape Love.  We also have to be loyal to our heart, the call of the heart, and the spirit in order to live not in prison, but in freedom.

Pray For Me Tonight -A Poem

http://www.youtube.com/user/kappelloartsnewyork1

Pray For Me Tonight -A Poem

 

There are days when the fog is go heavy, I can barely think through the day. There are days when it seems knives are being thrown at me every which way, but I wont lay down and die. Maybe it’s karma comin back to get its’ due, I don’t really know. I do know I have to stand tall and fight through the darkness to the light.

I look to heaven and ask whoever can hear me whispering now.

 

Pray for me tonight,

pray with everything you got.

The pain piercing through,

straight to the heart.

Pray for me tonight,

cause I’m fightin the devil with everything I got.

 

I’m breathing deep and fighting to stay where I am, maybe it’s not what it seems, but it feels that way tonight. It hurts so bad just to take a breath, and each breath is a knife cutting through the soul. Funny thing is even now, the one thing I think about is that one great love, the one that broke me. Funny the workings of the heart and the soul, funny what goes through your head.

I look to heaven and ask whoever can hear me whispering now.

 

Pray for me tonight,

pray with everything you got.

The pain piercing through,

straight to the heart.

Pray for me tonight,

cause I’m fightin the devil with everything I got.

 

I wrote this poem after a very rough night of pain etc.., a night when my fibromyalgia hit me hard, hard as can be and I wrote it the next morning and this gives you a sense of what it can do to a person when it’s full onslaught flare up. 

 

 

Is creativity Limited Just to the Arts?

Creativity

When you say the word creative, people tend to think, art and that’s valid, but is creative strictly the arts?  As someone who has Dysautonomia, creative for me is not just about the arts, but a part of every day life. How is that?

Scheduling.  There’s no scheduling  a number of activities in any one day unless I then want to crash for  two days after that.  There’s no scheduling early morning activities, as that is a bit difficult due to the fact I generally have trouble getting to sleep and so may not get to sleep till 3 am often times, even with meditation.   You have to get creative if you are going to have a career, and freelance is probably your best bet, but you will have to be very disciplined and that included financially.

Food.  When gluten upsets your tummy, and some gluten free stuff tastes really yukky, you have to figure out how you can enjoy a chocolate chip cookie or two at night and not feel ikky.   You take probiotics and find natural, homeopathic products to help offset,  you get creative.  I may even decide to start making a lot of my own foods, bread, pasta and who knows what else.

Products, such as beauty products.   I have to look at labels and figure out if I can use that product, so I had to do lots of research and came across a product line that is eco-friendly, organic, kosher and even hallal, with gluten free products, including hair and skin care.  I even became a rep for them recently.  Forever Living Products and I love their products, but I had to do a lot of trial and error with beauty products and reactions to find this line.  

I am realizing that creative is not just confined to the arts, but to all aspects of life and that is beautiful.

If you are interested in finding out more about the products, especially if you have Fibromyalgia or such issues and need eco-friendly, organic products, contact me.  

Shalom and Amen

Help Me Help Israel

http://www.amazon.com/dp/B00LWGZF1A

https://www.wavecloud.com/book/mosaic-life-and-faith-poems/978-1-62217-168-2/12737926

Blessed Are Those that Bless Israel

One of things that an artist can do is be a voice and as an artist there are three things I will be a vice for.  One is Dysautonomia, which can turn lives inside out and upside down, as it did mine. The other is for care of others by supporting organizations such as Caritas and Doctors without Borders.  I also hope to set the world straight on truth and the truth is Hamas and others wish to destroy the Jewish People and Israel and this can not happen again, can not be allowed to happen again this hatred can not happen, and Israel can not be made out the villain when it is not.  One of the organizations I will be supporting is the United Jewish Fund. 

Please help me to help others and support Israel whose children have to live in fear and hatred daily and purchase the e-book, tell others about it and encourage them to purchase it. 

Thank You.