Fibro Once Again, Bump In the Road

a dark room

Sometimes fibromyalgia can be compared to being in a dark room.  You make plans, want to, but then at the same time, the fibromyalgia is so unpredictable.  Add to that the fact that now my 93 year old mom is starting to forget, leave the gas on, and adding more stress, something not good for anyone with fibro. Today I missed out on a day of heritage celebration because of the fibro messing with my memory in a sense.

I have set my cell phone alarm to go for doctor appointment before, since the alarm on the dresser clock doesn’t work any number of times.  However, I was worried after mom again left the stove on and I then went in to get something and saw she had, and the shift in weather, made for a horrible night, so I set the alarm settings on my phone, but never saved them, so the alarm this morning never went off.  If mom wakes up and she knows I have plans she will wake me if I have had a good night’s sleep, my blood pressure was high, sugar was off, arthritis pain acted up or just knows I really want to be there, but she had not slept well, , so she didn’t wake up either.  I could get very discouraged, get all down and depressed, which wont help at all.  Instead, I am blogging, listening to music that uplifts me, inspires me and I am planning on my activities for tomorrow, including a class in Music Appreciation at my coop, in the community room.  This is not the first time that because of Fibromyalgia I have had to either do last minute cancelations or stuff like this has happened and it likely won’t be the last.  What matters here is how I respond to these moments, these “crisis” moments, and if I choose to see them as crisis.  Another example, I will do all I can to help a church I feel strongly about saving to thrive, but if after all has been tried it still folds, I can’t have a pity party for the church, what I can do is figure out how to make my faith life stronger and make the faith stronger.  I can honor my heritage daily in different ways and it’s up to me to find constructive ways to do so.  Life and fibromyalgia will throw curveballs and yet it’s not the curveballs that are the issue, it’s how I respond, that is the issue.


Reflection for Today, Attitude, Intent

soaring eagle

Nothing can stop the man with the right mental attitude from achieving his goal; nothing on earth can help the man with the wrong mental attitude. ~ Thomas Jefferson, American former president from 1801 to 1809

Attitude and intent, what’s the big deal, you have a dream, a goal, see an injustice, what you think is one, a need you think needs met in society etc…, you just go full speed bull in a china shop and do whatever it takes to make it happen, right?  Be the hero, right?  Not so fast, buddy, not so fast.  A goal, even righting what you perceive as a wrong can be disastrous, have a disastrous end.  The attitude and intent of what you do has to be with integrity and nobility, with a sense of reason, objectivity, if we are talking on a larger scale in some cases historical and overall life context.  An article in Forbes recently explained that attitude is more important than one’s IQ.  Huh? That’s right attitude matters more than a person’s IQ, interesting huh.  Why?  A person with a growth mindset, a mindset of willingness to learn, of inquiry is more likely to meet with success in life, then one without that willingness.  Attitude also is important in terms of being able to accept and manage failure, if you can’t, God help you, you are dead in the water.  Attitude is important in life.  You should have clear sense of values and all that, but you also have to be willing to learn, to grow, to accept failure as part of life’s learning process, if you do fall down and have to get up again.   Goals are set in life with intent of reaching a destination, but often we can go through life without intent, ships just roaming through the seas, drifting and that also has an effect on others who have no clue what we stand for, who we are really.  We may have a sense, but we leave others confused, and even in just our day to day lives, in our speaking etc… what is our intent?  Do we know?  Do we have any idea what we are achieving? Most likely we give no thought to that.

I am realizing in my own life how much of an impact my fibromyalgia and my not so healthy co-dependent relationship with my mom has had on my attitude, not in a good way.  I am also realizing I have been left with impatience and fatigue, overall impatience and fatigue with life, human stupidity etc…, you name it I have impatience for it.  I also realize that intent is something that I never really thought about in terms of my artistic life etc…, and it is only now that I have really come to a place of intent, the intent being to help people find their place of spiritual and creative potential, and figure out how to best fulfill it, hopefully with that undo some of the damage done by this “modern, and liberal progressive” malarky.  As for my own self, I am going to be seeking community, community close to home, in and through my coop,  faith community, connecting to my culture through the Casa Italiana at NYU, and perhaps a meet up group I create.  I have some work to do in terms of my own self as regards the toll these two things have taken on my attitude and intent, but half of the battle is knowing, so I am well set to make changes. 


The Body Speaks, Tough Lessons To Learn


It can be a long and difficult road when the body has been damaged by the subconscious barrage of negativity thrown at us from our own inner voice, negative choices made, regrets from choices made, from others, the media. Rebuilding and healing may not be an easy process, but it is possible and one must find the most constructive affective way to do so.

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


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

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.