Friday, April 18, 2014

THE FIBROMYALGIA SERIES PART A









As we keep saying, 
until we are blue in the face.......


A - is for this is not all in our head! Even though research has proven it and medical journals have validated us there are still physicians who think this is all in our heads. It's demeaning and infuriating and it causes torment to those who have to go from doctor to doctor to find one that will believe that we're hurting and there is a reason.

A - is for the anguish this causes and......

A - is for the arrogance of some doctors and you'd like to slap them silly for callously dismissing the symptoms we have all because they can't find the time to help you with management.

A - is for advocate. There is no if, and, or but about it. We must be our own advocate. We need to arm ourselves with as much knowledge as we can. We need to watch what is prescribed and learn about our condition and how to manage it.  If we don't, no one will. The medical community is full of naysayers and doctors that haven't got the time for us. 

A - is for assertive. Yes, we need to have a voice and use it for what we need and expect from those who treat us. We should never walk out of an office in tears. We should never be confused by instructions or treatments that don't make any sense. When we find our voice we also find our confidence. Never be afraid to stand up for what you believe.

A - is for advice. Everyone has advice and you'll get a ton of it. People can be well meaning but this isn't just tired. This isn't just, "well I have aches and pains too." Everyone has someone who has someone who knows someone who has Fibromyalgia. Again, I'm sure they are well intentioned but there is advice galore out there. If you just take more magnesium it will help you.........sometimes it's just better to smile and say thank you.

A - is for appallingThere are sites that are full of the latest "cure." For $49.95 there is a supplement that will be the answer to all your prayers. These sites prey on our pain, fatigue and desire to find anything that can help us resume our life. There are snake oil salesman disguised as physicians that will promise to cure you if you just sign up for their protocol. There are people that will take advantage of the misery of others. Do a lot of research before you succumb to herbal remedies, vitamin or IV protocols or anything that promises you a cure. Some can be dangerous, let alone extremely expensive. Be careful.

A - is for agony.  Chronic illness takes a toll on your life. There is the physical agony and then there is the emotional agony. I don't know which one is worse. 

A - is for acknowledge. I have to acknowledge that this is "what it is." Why I still struggle with denial is beyond me. I think it's those days that I feel like I can leap tall buildings in a single bound. 

A - is for anxiety. Every single time, I mean every single time a new symptom pops up....

which brings me to.........

alarmed...............

and..........

waiting again for..........

something that will.........

alleviate all of this...........

( and this one is shorter because there is another A in Fibromyalgia!!)





Tuesday, April 8, 2014

THE FIBROMYALGIA SERIES PART Y








We still wish we had our old lives back.
I don't think that ever leaves us.
But we can still have a meaningful one.



Y - is for yearning. Yes, I still struggle with the loss of my career. I loved new home sales, however,  I struggle with it less than I did a year ago. I think we all have that but reality sometimes dictates otherwise. 

Y - is for yawning. I do that a lot. Fatigue is one of the twins (what I like to call pain and fatigue) that plague my life. Like a lot of people with Fibromyalgia, I also have Chronic Fatigue and Autoimmune Hashimoto's Thyroiditis. Between all of these ailments I have trouble knowing what to attribute to what. No matter what......I still don't get refreshing sleep and I'm always very tired.

Y - is for yourself.  We must take care of ourselves. Sometimes we feel guilty that we can't do things we may have planned or things that need to be done. We need to listen to our bodies and be good to ourselves. Mentally, physically and spiritually. 

Y - is for yoga. Stretching is good for our body. We need to keep the muscles moving even though it may hurt. Exercise is one of the things that we must do. Yoga, Tai Chi is two ways that we can be good to our bodies and keep it in shape.

Y - is for yield. Sometimes we have to bow to the inevitable. One of the hardest things I had to learn is, "if you push you will pay." I still have trouble remembering that but it is important to yield to your bodies demands. It's tempting to do too much when a good day comes around but it is important not to do too much. (although sometimes it is worth it!!!)

Y - is for yell. There are times we just have to. Fibromyalgia can really piss us off. I say that built up stress isn't good for you so.........when everyone leaves the house......close the door and release all that pent up frustration. I yell at Fibromyalgia a lot. It helps because I don't end up yelling at everyone else!

Y - is for yucky. I hate those days. The twins have taken up residence and all I want to do is curl up in bed cause I feel just yucky, yucky, yucky.

Y - is for yellow. The sun is a beautiful yellow so when the weather allows, go outside and soak up that glorious sunshine. It helps your mood and gives us Vitamin D. Take  a short walk and feel the warmth on your skin.

Y - is for young-at-heart. It doesn't matter how old our body feels and that we creak like a 100 year old person. It's OK because we can still think young. Learn a new skill and keep your brain active. Read, learn technology.....it keeps you young.

Y - is for yummy. .........

Personally?

I like ice cream......

Some is good.....

more is better.....

and too much?

Is just enough.......





Tuesday, April 1, 2014

THE FIBROMYALGIA SERIES PART M









We're already to the letter "M."
Where would we be 
without the pain in our body?
Which leads me to .....


M - is for our muscles. That lovely old fibrous tissue that gives us chronic, widespread, musculoskelatal pain which is our namesake.

M - is for moron. I feel like one when the fog sets in and I can feel my IQ drop by 60 points. It's very disconcerting to not be able to remember things. It really is embarrassing when you stop mid-sentence because you can't remember the next thing you were going to say.

M - is for motionless. There are those days when the pain is so intense that I just want to shut out the lights and lie motionless until it passes. 

M - for melancholy. Because the pain and fatigue are our constant companions it's tough to remain upbeat. This is a constant struggle because I just don't want to remain in that state. I will say.....it's work.

M - is for management. We must be ever mindful to manage our symptoms and not let them run away from us. We live with our doctors on speed dial and scour google for ideas and articles about the latest thing just in case it can help. I think most of us can run down numerous management tools that work and those that are junk.

M - is for mysterious. Odd symptoms appear and disappear at will. I have no idea what they can be attributed to and I end up throwing all of them into my Fibromyalgia wastebasket.

M - is for massage. At times, massage seems to help. When my muscles are in real bad shape the thought of anyone "kneading" those muscles is terrifying. I'd be screaming through the treatment and I don't think I'd help their business. 

M - is for memory. Memory? What is that???

M - is for money. Fibromyalgia isn't cheap. Even with insurance the co-pays can be ridiculous. It seems that the month starts and ends with doctor appointments and trips to Sam's Club for my prescriptions.

M - is for mellow. Believe it or not, I've mellowed in my old age. Now, there are those in my family that would hotly debate that statement but I believe it to be true! Not getting on my soapbox about everything has helped. Stress is a killer and it just isn't worth it. I'm not going to change the world. I need to just take a chill pill.

M - is for merciful. Even on the days that are terrible I go back to my mantra, "it could be worse." It could be a lot worse and I don't even want to think about it. People are dying and have cancer.....I'm grateful that what I have can be managed and isn't life threatening. It is life changing but I can deal with that. I am thankful that God has been merciful and I thank him every day that my family and friends are happy and healthy. Me? I'll get through this.

M - is for meaningful. Even when things are tough, we need to find something that makes our life meaningful. For me, it's this blog. For you it may be looking up in the sky and seeing a beautiful sunset or the soft breath of a dog sleeping next to you. What ever you find that is meaningful.....revel in it. 

Even though life is tough,

Even though life sometimes isn't fair,

Even though we think the pain will never end,

Even when we think we can't take much more,

just remember,

it truly is better than the alternative.









Saturday, March 22, 2014

THE FIBROMYALGIA SERIES PART O









Yes, it's the O series.
And I am tired.
Just tired....or......


O - is for out of gas. I have just been soooo tired lately. It feels like there is just nothing left. The fatigue has taken over or, as I call it, I've been visited by the twins. (The twins are pain and fatigue.)

O - is for ouch. I've had a lot of that too lately. It usually starts in my hands and works its way out. All I know is that my whole body has said "ouch" for way too long.

O - is for that out of control feeling when both of the twins hit me with a vengeance. I just feel slammed by them and my body is out of control. 

O - is for organized. I have to be organized otherwise I would forget everything. My OCD kicks in and it feels kind of good to keep a little of it around. Organization makes me feel good and safe. Everything, I mean everything, goes into my phone. Checking it is a whole other issue but at least I put it in there. 

O - is for ostrich. Like that beautiful bird, I tend to put my head in the sand when it comes to symptoms. I tend to think everything is due to the Fibromyalgia and that is just not true. On the other hand, I'm more aware of everything that happens in my body. I don't know whether that is prudent or sad.

O - is for organic. Ever since the Fibromyalgia I've been more aware of the food that I eat. I look at labels and try to go for the organic whenever possible. I think that pesticides and processed food is responsible for a lot of the illnesses that are more prevalent today.

O - is for objective. I read a lot of research and articles. A lot of them. I try to remain objective when it comes to the management of Fibromyalgia. I also come unglued when I read stupid articles from people that don't have a clue about the science and truth about this illness.

O - is for opinionated, ornery and outspoken. I am and I know it.

O - is for oppressive. The fatigue and pain sometimes feel so oppressive. It weighs me down and I can't seem to get out from under it. My attitude goes in the toilet and I get depressed. There are times that I can deal with it and times that I can't. Lately, I've been in the "can't" category.

O - is for outside. I need to just go outside and walk. The weather has been beautiful in Las Vegas and I should take advantage of it. Actually, I need to just go outside, look at the sky and breathe in the fresh air. It could be a lot worse and I need the Vitamin D.

O - is for Okay. I'm getting there and I will get there. I'm just going to put on a Disney classic cartoon. They always make me smile. How about Robin Hood??? 

There we are.....

Roger Miller singing......

O de la le

O de la le

golly what a day.

That's it!






Sunday, March 16, 2014

THE FIBROMYALGIA SERIES PART R






So here we are
at the letter R.
Most of all we reflect....
and remember.....



R - is definitely for remember. Fibromyalgia is tough on your life. Most of us were Type A personalities that would thrive on the stress of our lives or careers. Once this lovely syndrome Velcros itself to us, we remember with longing our lives and for those of us who lost it....our careers.

R - which brings us to reinvent. If you lost your job or career, Fibromyalgia causes you to have to reinvent your life purpose. This is a tough one. I still struggle with this one but every time someone comments how I've helped them I know that I've found something that I wouldn't trade for the world. It has given me a creative outlet and it's given me purpose.

R - is for reluctance. Even though I've found an outlet, I've been reluctant to let my old life go. I still go through periods of longing and wish I could try sales again. Every time I think I can do it a doozy of a flare serves as a reality check. Ooh......another R.

R - Here we go. Reality check. Like I said.....just when I think I can disregard my body and run headlong into another idea, a flare comes along and slaps me and says...."not so fast..."

R - is for rebellious. Yes, I'm a rebel. Just look back at the other words. I try to live in a way that is kind to my body but every now and then I say.....eff it and push myself. I need to keep saying..."if you push you will pay." I cannot forget this because it is true.

R - is for relax. I need to do this more often. It's not in my nature to live on the comatose side of life but I push too much. If we just close our eyes....shut out the world.....it will help our pain. When life's challenges come at us: just relax.

R - is for recognize. Listen to your body and recognize what it's trying to tell you. I know that my flares usually start in my hands. I'll start rubbing them and then, before I know it, the old familiar ache starts to spread throughout my body. It's also very important to write symptoms and feelings down for your doctor. I hope you have one that listens to you.

R - is for reminders. When the fog hits and you don't know why you walked into a room it's helpful to have little reminders around. I make lists and lists in my phone. I have all my appointments in the calendar. What screws me up is that I forget to look at my phone.

R - is for those restless nights. Even though we have fatigue, we don't get enough restorative sleep. Thank goodness for my iPad. I don't know what I'd do without it. To try to get to sleep, I spray lavender on my pillow and I use melatonin tabs called Mid Nites. I know there's medication to help sleep but I take muscle relaxers and pain medication. I'm afraid to take a sleeping pill on top of that. 

R - is for responsible. Remember that all medications are powerful and we need to be responsible with them. That means responsible in taking them and responsible in where we keep them. If you have others in the house with you take care who has access to them. 

R - is for relatives. My hope is that they recognize what is happening to you and don't make you feel like your faking it or being lazy. Fibromyalgia is real. It's tough enough to deal with the symptoms of this illness without friends or relatives making it worse. If you have people in your life that don't believe you, get to a support group. Reach out....it will help you. None of us can go through this alone.

R - is for realization. Fibromyalgia isn't going away and right now there is no cure. We need to learn management tools so that we don't get overwhelmed. Fortunately, there is a research going on out there that may help point to a cause. 

R - is for renewed. I may not get enough sleep but each day I wake up feeling a sense of renewal. I know that life could be a whole lot worse so I try to be grateful for each day. Gratitude and laughter go a long way.

R - is for rewarding. Thank you so much for reading my blog and commenting. All of you have truly given my life a direction that has so much meaning. It truly is one of the most rewarding things I've ever done. 

and lastly.....

R - is for ridiculous. 

Reduce it down to the ridiculous and find something to laugh about each and every day.  

Find joy and happiness and love. 

Sometimes the pain makes it very difficult but find it......

in spite of the pain.






Friday, March 7, 2014

THE FIBROMYALGIA SERIES PART B







Here we are to the letter B.
If you were to ask anyone to name a trait....
and it's not brilliant.....


B - definitely have to start with bitchiness. When I am exhausted and the pain has moved in and taken up permanent residence, I tend to get a tad bitchy. It starts out with being snappy and as the day progresses it can definitely move into the bitch range.

B - feeling like you are bound by pain. I have to remember that this too shall pass. I have two pain levels: manageable and voodoo. The other words in this category are Bad, Bone-tired and Beaten down.

B - is feeling betrayed by your own body. Every time a bizarre symptom rears its ugly head we wonder if it's something to do with Fibromyalgia or another body part is deciding to revolt.

B - is for the belligerent stance we take when a doctor gives us that "Fibromyalgia-isn't-real" look. If this look has been given to you.....find another doctor. This brings me to another word for doctors that either don't believe you or patronize you......Bogus.

B - is for keeping the emotions that are tied with chronic illness bottled up inside of you. This isn't good for you or anyone else for that matter. I have trouble in this area. I think when you're somewhat reserved opening up is difficult. That's why I was surprised how much I could open up in this blog and it was truly healing. If you have trouble in this area....get a journal and write. Trust me...it helps.

B - Which brings me to balance. Life in general is easier when we find balance. It can take a bloody and bruised, bedraggled soul and bring it peace. Take time to be quiet and listen to that inner voice that is in there buried beneath the struggles of chronic illness.

B - is for beige. Beige is looked at as a flat, neutral color. We don't have to live life in beige because of Fibromyalgia. Find joy in something and laugh every single day. 

We may not be able to run at full speed and we may be tired and hurting. There are lots of challenges that we face every day because of this, however.......

Remember.......

In all things we are blessed.

Baggy sweats or pajamas still feel really good........

We can still walk barefoot and feel the cool grass under our feet...

A glorious sunrise or sunset is still breathtaking.

And even though we look in the mirror and see pain....we are still beautiful

and maybe, just maybe.....

in the midst of pain we can find purpose and bliss.









Sunday, March 2, 2014

THE FIBROMYALGIA SERIES PART I








The Fibromyalgia Series, Part I.
OK....some of my traits don't change.
Fibro or no Fibro....
I tend to be Impatient.


I - well, let's start with that lovely word impatient. There are times that I live in denial so when I decide I am not going to let my symptoms get in my way; then I am impatient. I'm impatient to get moving and to do anything I can whether I'm up for it or not. Yes, I do pay for that impatience. I didn't say I was the brightest candle in the box when I try stupid things. I was going to say very, very impatient but, then I thought, either you're impatient or you're not. So there you go. 

I - absolutely has to stand for invisible Illness. We can look like we feel fine to the untrained eye. Only those people close to me can see when my mouth is smiling but my eyes aren't. We still struggle with the invisibility issue. On one hand, it doesn't give credibility to the fact that our bodies are in a great deal of pain and that we struggle with so many issues and symptoms. On the other hand, that invisibility can shield us from that very credibility issue. Unless we want to come out of the shadows, we can hide there.

I - then a lot of us deal with Insomnia. Either we cannot get to sleep or we fall asleep quickly but don't stay asleep. That's the part I deal with....the lovely alpha wave intrusion. Those pesky alpha waves that love to pop in just when I'm about to go into a refreshing deep sleep.

I - is also for the inconsistency of my symptoms. Every day can bring a different issue and when compounded by stress or even the weather...well, it's a symptom free for all.

I - is also for the inconvenience these symptoms bring to our lives and the lives of our friends and family.  When we try to plan something (I know....I know) something will invariably rear its ugly little head and shred those plans into oblivion.

I - is for the struggle we face with isolation. Chronic pain tends to do that. After all, who wants to be out and about when you're tired and in pain? This is one area that we really do have to fight. It's not good to be alone. We have to reach out whether it's friends online or a support group. If friends and family don't understand this illness there is help out there.

I - is for issues. We all have them and chronic illness can compound them. None of us are alone in this fight. Some of the nicest people that I can call my friends are those that I've never met face to face but truly get this illness and would be there for me if I need someone to talk to and vent.

I - is for just feeling icky.

I - is for the imagination we use to manage our symptoms. 

I - is for irritable. 

Hey, being really tired and in pain tends to make one a tad snippy. 

I'm real good at this one. 

Especially first thing in the morning.

Especially before coffee.










Friday, February 21, 2014

THE FIBROMYALGIA SERIES PART F






The Fibro series.
And, golly gee....
we're going to start with the letter "F."
Guess what that stands for??
Frick??


F is for Fibromyalgia that wants to suck the life out of you. It takes a vibrant, thriving person and turns them into something that is unrecognizable. I look in the mirror with wonder and say, "what the hell happened to me?" 

F is for the fog that turns a fairly intelligent person into a lump of jelly. There are times that I actually think an amoeba has a higher IQ than I do.  The fog has me looking for glasses and they're on top of my head. It's scrambling for the keys that are right in my hand. It has me standing in the middle of the grocery store wondering what I was supposed to buy.

F is for the fatigue that isn't relieved by sleep. It's the feeling that roadkill feels better than you do. It's going out to do simple errands and coming home feeling defeated because you haven't expended hardly any energy. 

F is for the fun that we miss. It seems that making plans is a thing of the past. If we do make plans there is always that caveat that "it depends on how the day progresses."  Sometimes I feel like I sit in the shadows because I don't want the focus to be on me. I used to have a lot of fun. Now, I don't.

F is for fat. I don't get as much hard exercise anymore so it's harder to lose weight. Even though I'm not, I feel like a big fat lump. 

F is for frustration. Everything about this illness frustrates me. Every single time I get dismissed by another doctor I get frustrated. When I get the look that tells me the word Fibromyalgia is a garbage can diagnosis, I get frustrated. I get frustrated when I can't think straight and I get frustrated when I don't feel good for days on end. 

F  is for force. There are the days that I finally say "screw it" and force myself to either work out or push myself beyond what my body decides I'm able to do. I do this periodically when I get tired of being tired.

F is for the fetal position that I find myself in after I get finished doing the above. 

F is for fearful. Every time a new symptom rears its ugly head I become fearful. I'm afraid of my own body because I can't trust it anymore.

F is for facade. I do this well because I don't want people to know how bad the pain is or not to appear weak. I hide behind this smiling facade and only those who know me well can see beyond it.

F is for faith. I have faith that it will all work out. It took awhile to get here. I've suffered through the confusion about my path and through the loss of my identity and income. Faith has brought me through so many things in my life and it has never failed me. I just have to search to find it and bring it front and center.

F is for forgiveness. I think that we need to forgive ourselves for being sick. We are so used to having control over our bodies and our lives that it's tough to navigate this thing called chronic illness.

F is for flares. Nuff said.

F can be for so many things,

feeling frail,

feeling feeble

feeling frightened

feeling forgetful

feeling fearful

feeling those fears are frivolous

feeling that finally life will never go forward.

But then,

F can ultimately stand for freedom because we can be free of fear.

F can also stand for fibromyalgia allowing us,in spite of everything, to fly and find ourselves.

What other F-words do you know??













Tuesday, February 11, 2014

THE OPTIPESS ANOMALY







Optimist? Nope.
Pessimist, shmesimist.
It all looks the same to me.
And I'm positive it will all work out.
I guess that makes me....
an optipess.


I'm not being pessimistic, I'm thinking in a positive manner.  I'm positive that this flare is winning. I really want to feel better but my thoughts are not cooperating. 

I know that thought can do so much for your outlook and help distract you from the pain that threatens to take over every fiber of your being. There's so much that attitude can help and when chronic pain is a part of your life, you definitely need to keep your attitude in check.

I know this but I'm having a hard time doing it.

As I research right brain and left brain function, I see a startling fact. First, meditation does grow the gray matter in your brain. I'm not saying you have to sit cross legged and say ohm but some sort of quiet time focusing on nothing but relaxing your body and getting your brain waves down to something lower than an beta level would be highly beneficial. Second, thinking does affect your body and it will go in the direction of your thoughts. 

Remember, the power of positive thinking?

The beta level is most associated with our normal waking state. Beta helps with analysis, logical thinking and active attentive function. Stress can throw the beta level into overdrive. I think that I'm very familiar with the beta level in overdrive.

Negative thinking brings cortisol and other lovely things that are only intended for the flight or fight syndrome. That syndrome is there to keep us alive. It's not there to be used on a continual basis or as a way to live. That impacts your body in a very unhealthy way.

Negativity also obscures your thinking and stands between you and your realization. I heard this today and pondered on this for awhile. While I have talked myself into many, many things; self realization and having the ability to move beyond my fears isn't one of them. It would be interesting to find out how much I could really do if I didn't talk myself out of things due to fear or my inherently cynical way of thinking.

So, how do you take a natural cynic and turn that around into a positive force? I haven't figured that one out yet. I've got a litany of quotes regarding human nature.......

No good deed goes unpunished.

When you see the light at the end of the tunnel it's probably the train coming at full speed.

It's always darkest before it goes pitch black.

In the battle between you and the world.....bet on the world.

Yep,

just call me Little Mary Sunshine.........

Does this tell you anything about how I feel right now??

Very optipesstic.









Saturday, February 1, 2014

THE BLOODSUCKING LEECH EXTRACTION









Little Sucker Word of the Day
leech


"You would probably be alarmed if your doctor kept a container of bloodsucking worms on her desk, but it wasn't always so. It may be shocking to learn that today's word, before it denoted said bloodsucking worm, meant "physician" or "surgeon." The creature attracted the name because of the former use of leeches by physicians to bleed patients. Leech is a native English word, of ancient origin."

I get Thinkmaps Visual Thesaurus Word of the Day in my email. I'm one of those geeks that love words. I will say that since Fibromyalgia has been foraging around my system my mind works slower than it used to and my vocabulary has definitely shrunk. (Hey, I sounded kind of literate there for a moment!)

Not so fast.
Anyway, when I saw this word I knew I'd have to comment. 

Where to begin? The fact that while there are some excellent physicians who really take the time and have the desire to help you, there are those that resemble the picture and word that I'm writing about. You know those doctors. The ones that take thousands from you promising to cure what ails you only to tell you that it will take thousands more, "but you're on the right track."

Or those who belittle and dismiss your symptoms as, "all in your head." The ones that tell you Fibromyalgia isn't real and they certainly won't write that down in your chart.  The ones that have you crying when you leave the office. They are also the physicians that have you doubting yourself and you start thinking about what you did to deserve this or, worse, what you did to yourself that brought this on. 

But then I thought of something else.

There's also this blood sucking leech called Fibromyalgia. It wants to suck every bit of life and joy out of you. There are leeches of this illness all over our bodies and our soul and every time we recognize one of them we need to pluck them off and throw them in the fire. The leech of telling us life is over and we will be miserable for the rest of our lives. That one? Definitely pluck that off and throw it!

Whenever anything robs you of your joy, whether it be a symptom or a doctor, get rid of it.

We have enough to deal with managing our symptoms.

We can't let all this other crap get in the way of that.

I know that laughter is truly the best medicine,

even though sometimes I feel like I'm in the placebo group.