Shock and Disbelief.....

WTH???

I try very hard to aim for positivity with this blog and for the most part I maintain that here.  There is quite enough ugly in this world and in the lives of those of us with chronic illnesses.  But......today I must make an exception.  As most of you know there was a 60 Minutes report concerning disability filings that has slammed most of us with one fell slap in the face.  I am not going to post the video here because it is so biased and one sided but you can click on the link above and find it if you would like.

Now I am not naive enough to believe that there is no fraud in the disability process and I realize that our government is over taxed and the best decisions are not always made.  However, to come down on one group or illness and claim that there is an overwhelming  majority of fraud in that one category is painful and ignorant.  It takes us back years in the fight we have made to be recognized and accepted and most importantly understood.

Most of us suffer with other related conditions that add to our disability and I remember that the judge in my case noted that in his decision - that all of the relating disorders came together to create my disability.  Many of us worked for years after we became ill and tried very hard not to file for disability.  In my case I worked for 34 years and 18 of that came after I fell ill.  I worked from home for 14 just so that I could keep working.  I waited for over two years for the final decision on my disability and my family suffered a good bit due to that wait.  My story is not unique and is similar in many cases.

All we ask, those of us who are chronically ill, is for understanding and respect!  We have been called crazy and much worse, but we persevere - why you ask...because we are not well and it is the truth!!  It is REAL, it is frustrating and not something anyone would ask for just so they didn't have to work!!!  Most of us spent many years working very hard and were proud of that fact so don't belittle or lump us all together as one lazy bunch of so and so's who would lie just to get a measly amount of money that you can't even survive on.

Smell What?......

I know are have all heard of aroma therapy and the idea that smells can make us feel better, help us sleep, etc.  I believe in some of that but mostly I just use good smells to get rid of the bad ones.  Well, Hubby and I picked up one of those decanters with the sticks and the oil and it was pumpkin scented.  I just love fall and normally I will have fall scented candles around and stuff like that.

I don't know if I am just getting older or what but since I opened that smelly thing and the warm pumpkin scent has permeated the rooms in our house, I have felt a burst of Fall Feelings!  I am now a firm believer in this scent thing.  I have actually visualized that it will be cooler when I step outside (that's not happening - I live in SC) and I imagine pies baking, and I feel a little more festive.  It has brought about memories and feelings of Falls past and transported me from the mundane and everyday into a world of holidays, turkey, falling leaves and so much more.

Why do I mention this you say - I am thinking that those of us who suffer from chronic illness and pain could benefit from more of this type of therapy.  I know we have to proceed with caution because many of us are also very sensitive to smells, etc. and I am included in the group.  But.....there are many natural scents that we can use such as vanilla that will do the trick like my pumpkin.  Warm vanilla sugar is another favorite of mine.

Now.....the only drawback is that many of these make me hungry!!!  Ugh!!!  Oh well - good with the bad - right?

Always Learning......

I have been so lax lately about my blogs - just haven't been able to get the words down.  I have lots of things going on in my head - if only there was a direct link to my brain that would print it out for me.  Ha - that may not be such a good idea much of the time.  :-)

I read a very interesting article a few weeks ago and it really hit home with me.  Along with the Fibro and CFS/ME, I have ADD and other learning disabilities that were never addressed as a child.  Back then we just didn't know much about this sort of stuff - I just thought I was stupid and while that may sometimes be partly true.....I don't believe it is the whole story.  This article has really given me the ability to ease up on the crushed self esteem that had been caused by the combination of all of these things.  Maybe.....just maybe it's not necessarily all  my fault.  Time has always been allusive to me and math - lets don't even talk about that - I just simply am awful at it!  This article talks about how many of us have these types of problems and they are common among us.  I don't believe anyone is really sure about why.  Check it out and it may speak to you as well.  I always feel better learning more and the more I know, the better I feel.

http://chronicfatigue.about.com/b/2009/11/24/problems-with-time-math-in-fibromyalgia-chronic-fatigue-syndrome.htm 

Chain of Causation.......

Since I tend to watch a good bit of television, I love comedies - laughter helps no matter how I am feeling and I get hooked on programs that are about families.  One that I recently found is "Are We There Yet?".  It's about a family with tween kids and a mom and dad who are busy working and trying to make this family work.  Always funny, right?  Well, Hubby and I were talking this morning about a line they use on the show quite frequently ~ Chain of Causation.  It's the kids way to explain their way out of things and the adults usually follow along.  I love it and if you are a parent or were a kid, you totally get this.  Just in case you don't, below is the definition.

Definition of CHAIN OF CAUSATION

• A series of events, each of which was caused by the immediately previous event.

• A series of events or situations interrelated and leading to a particular effect

For those of us with a chronic illness, our chain of causation is quite important because it allows us to trace back our steps and possibly figure out what caused a particular flare or symptom.  It's like a puzzle for me and over the years I have gotten pretty good at it.  I over ate on Tuesday night and had some fatty fried foods, and therefore I suffer on Wednesday and Thursday with tummy problems and more inflammation and......therefore more pain as well.  It is the same general idea as the balance discussion, but gives you a little better look at how far down the road the actual deed or action can cause difficulties.  Keeping a journal can really help with this and help us all to make better decisions or actually realizations that we may not otherwise come to easily.

Sometimes I feel like those V8 commercials and want to bop myself in the head - why didn't I know this already or notice that one small action can cause so many negative reactions.  Simple - right?  Not always because there is such a vast array of symptoms and causes.  Sometimes my Hubby is the one who puts the pieces together because he may notice something that I miss.

Good Luck with your chain and hopefully we can all have better days by a little change in our thought process.....thanks to the kiddos on Are We There Yet?.

On the Dark Side.......

 Ugh.....I hate when I get like this and I can't seem to help myself.  I am in a funk and it happens every now and then - not exactly sure why, all I do know is that the deeper I go the harder it is to find an escape.  I don't know if you can label these episodes as depressive or just anxiety or just part of this whole syndrome of illness.  But...one thing is for sure.....it's not pretty and my family knows better than to poke the bear.

The process is always pretty much the same.  I will be going along making small improvements, feeling that I am doing better, feeling like I have a harness on this crap and that even though I have to live my life differently, I can manage.  Then, out of no where it comes in and slaps me down to the floor and says Oh no you don't!!!  Don't even think about it.....!!!  Okay - I give, I say Uncle and I creep back to my corner and start sleeping way too much cause I can't help myself.  I eat sweets and eat too much and don't do much of anything which makes everything worse and round and round we go.

Maybe it is because we have had lots and lots of rain and cloudy days, maybe it's winter and possibly it is being alone way too much while everyone around me goes about their daily lives.  Possibly my meds need to be tweaked.....I sure don't know and unfortunately there is no easy answer and no where to readily seek advice about this hole I am in. 

Another possible trigger for me is when I get overwhelmed with all of the doctor's visits I need to catch up on and keeping up with refills on my prescriptions.  For someone who has issues remembering and understanding things, this can be a daunting task.  As is the norm for me, I put off appointments because I don't want to go through the process of coordinating transportation or asking my hubby to take time off from work to get these accomplished.  My Internist requires an office visit for every refill and this can get complicated especially when it is an important med like blood pressure, etc.  So I walk on the edge and let them get almost all out or completely out so that an appointment needs to be made right away.  UGH - I hate that.

Then it becomes like a game of dominoes - seriously.  OK - we are out of the BP and the thyroid is due too, oh and did you forget that you have been out of cholesterol for months....oops.  You already know you are not sleeping at night and then you can't get out of bed and the itching is getting worse and worse and Hubby is getting frustrated with you.  STOP......my brain is going to explode!

To top off these frustrations, I came across the article below which makes me want to light my hair on fire - OK maybe I am exaggerating but this is just what I have been experiencing.  Most Neuro doctors will diagnose you with a Somatization disorder because - guess what - you have pain in areas they deem to be all in your head.  Guess what - it is in our heads but not in the way this believe!!!
http://abcnews.go.com/Health/somatic-syndrome-disorder-mislabel-sick-mentally-ill/story?id=18606406

All right - I am done with this rant - I will go commiserate with my dog who appears to be in some what of a funk himself.  He gets it.  This too shall pass - I hope.

Are You Itching To Find Out.......

Am I the only one....surely not!  I am driving myself crazy.......ITCHING!!!!!  I keep thinking is it dry skin or just winter stuff, allergies, whatever, but the itching just does not make sense.  I buy special lotions and shampoos and I sleep with a back scratcher hanging right beside my bed because I wake up at all times of the night....you guessed it.....ITCHING!!!!  It is driving me nuts not to mention leaving scars and causing hair loss from my constant scratching.  I scratch to the point of drawing blood and I am constantly blotting up a spot of blood or treating scabs that are trying to heal.  My back looks like I had a bad run in with a tiger or a very angry cat!  I am truly not exaggerating here - my eyes itch, the inside of my nose, inside my ears, and my head wakes me up all night!  What the heck (not the word I had in my head but trying to keep this PG)!#$!%@))!@@#....

For the longest time I have thought it was just me and when I asked my doctor about it he just seemed frustrated again and gave me a prescription for a topical cream which of course did no good at all - none!!!  Well today I finally decided to look up itching and Fibromyalgia and light bulb.....it is part of the syndrome and like everything else it is sensory----not really topical at all.  Whew - that makes perfect sense to me and I don't feel quite as crazy......well I do but a little less.

The big problem now is that I haven't really found a good solution since my itching covers so much of my body.  If you have itching in one spot then cold packs can work wonders because they tend to numb the area.  As always I find Adrienne Dellwo has the best answers to some of our issues.  Itching is no exception and here is a wonderful article she wrote with some great solutions....http://chronicfatigue.about.com/b/2011/08/20/extreme-itch-in-fibromyalgia-chronic-fatigue-syndrome.htm.  She is the go to for no nonsense information and I can't believe I didn't look for this before.

I would love to hear if you have this problem or have any suggestions or solutions.  I am just ITCHING to find out more.....ok sorry but I couldn't resist.  We have to laugh right.....crying makes me ....ITCH?!!!

Can You See Me Now?......

Invisibility is part of our vocabulary and becomes an inescapable part of our lives once we have been diagnosed with certain types of chronic illnesses.  Have you ever sat in your doctor's office and felt you had melted into the furniture and weren't visible to anyone there.   I sure have and I don't much like it.  This is not another depressing whining blog entry I promise - so don't click away just yet.

I was reading a blog that I follow - Lil Blue Boo and I realized how guilty we all are of this.  What do we see all the time and don't really notice.  Ashley's blog entry was about an older man waiting at the same area in the hospital when she was awaiting a scan.  She realized he needed help and made an attempt to assist him but in the end was very sad at the realization that no one really noticed he was alone and needed help.

I truly am trying very hard to be alert and notice things like this but I am continually shocked at what I miss right in front of my eyes.  If we know first hand how hurtful and painful it is to be ignored and misunderstood then it only makes sense that we be the difference we want to see by trying to search out those in similar situations and actually do something - it doesn't have to be a big something.  Small ripples can make huge waves if we try and every positive thing we do for others makes the world a better place to live.  Like the three monkeys, I am going to try hard and put one hand over my complaining mouth and open my ears and eyes to others and maybe at the same time get my mind off of what is hurting and difficult in my own life.  It's worth a try. 

Can We Get A Respectable Disease Over Here.....Please....

Do you ever wish you had something else.....almost anything else other than an invisible illness that is suspect and misunderstood???  Well I sure do - every day.  I know that is counter productive and silly but it is the way that many of us feel!  I remember way back when I was first diagnosed with ME/CFS - I was relieved and I told a friend in a support group how thankful I was that it wasn't something else.  Then when Fibo was added and then Osteoarthritis and Paget's Disease and so on and so on, I realized that with these chronic illnesses we have the same quality of life as someone with MS or Parkinson's Disease.  But.....we are vilified, accused of being hypochondriacs and worse on a daily basis.  We fight for disability in a way that those with more respectable diseases don't have to.  No one wants to talk to us about how we feel or what is going on with us.  These conversations are avoided at all cost.

Please don't misunderstand - I don't want sympathy or anyone feeling sorry for me or my situation.  I don't want to drone on endlessly about my symptoms, I and most of us, just want to be understood.  We want to be treated in the same way a person with one of those understood believed in types of illnesses are.  I know this may sound petty to someone who is not traveling this path with us, but it makes our journey harder each day.

How many times have you been in a situation that someone asks about your health and you don't want to say what the actual problem is because you don't want to see that look on their face??    I believe all of this has come to the surface again for me because I am in the process of completing my SSDI Update Report and it brings back all of the memories and looks of disdain I experienced when first filing for disability income.  I worked 34 years of my life - many years after I was first diagnosed and fought to keep working way too long and therefore I will admit to being a little over sensitive about this topic.

I can't tell you the number of times I have read in reports that ME and Fibro alone can be as debilitating as MS or other neurological diseases.  When will this become a commonly understood fact??  I tell my husband that one day, long after I am gone, I hope there will be understanding for what we live with and people will say.....I can't believe how hard it was for those who came before us and were misunderstood..... 

Thank You Mr. President......

My post today may not be a popular one, but something I feel strongly about all the same.  A few years ago I wrote a post here which was an open letter to our President ~ President Barrack Obama.  It was a plea asking that our government look closely at the health care crisis and take action.  At that time I was caught between loop holes in the system and was unable to attain proper health care for my chronic illnesses.

Many may say that I am Pollyanna in my support and belief in our current President and I admit that may be just a little bit true.  But, I stand firm in my belief that President Barrack Obama is an extraordinary human being and we will look back on this time and realize that we were all witnessing faith, hope and love in action during this time in our lives.

Now you may say that a President has to be tough and cut throat to do his job - I don't believe this to be true.  I believe that a person who has the best interest of all people, all colors, all faiths, all man kind, will make the best decisions for us all.  For those of us who have been in the group known as the disenfranchised, we see through the politics and muck and myer and know that we are so very fortunate to be alive to see the actions of this man and those who support and work with him to do the right thing even when it is not the popular thing to do.

I would go a step further and guess that if Martin Luther King, Jr. were alive today, he would be so very proud of this man who blends the best of two races and is an enigma in our life time.  At the ripe old age of 56, never has there been a time in my life when I felt so very thankful and in awe as I watched the Presidential Inauguration with tears in my eyes and a very full heart. 

Imagine, what would happen if we all, even those who don't support our President or his party, gave up the negativity and tried, really tried to support non-political decisions and actions.  What if all political decision weren't based on money?? What if we worked to all get along and put all negative thoughts aside?  The possibilities are endless and we all will gain if we try and our children will be the beneficiaries of seeing true cooperation and love in action.  What if we reached out a hand to those weaker than ourselves and made the right decisions in our daily lives rather than the one most popular???

On this day of service, we can all think about what we can do to move ahead with positivity and love in action for Love is meaningless without action and action is nothing without Love!  This post is for those friends and family of mine who still fall between the cracks and continue to struggle to get adequate support and health care......Susanne, Julie, Lynda - I love you all and keep you in my prayers each and every day.   There are two many to name them all but know that those of us who can, will continue to beat the drum and fight the good fight.  May God Bless the POTUS and the FLOTUS as well as their family!