Mary Hart.....WTH?????

OK - so I am watching television waiting for our frozen pizza to bake.  Entertainment Tonight is having a special good bye episode because host Mary Hart, is leaving after 29 years.  It is filled with music and dance and laughter and tears.....and then - there it is - I realize I am wiping away tears.  What the hell!@#!$%.....OK, I like Mary Hart but this is ridiculous.  After a few minutes I realize that I am not shedding tears for Mary - they are for me.  I realize that I feel her sense of loss so completely because I have had to say so many good byes over the last 20 years and unlike hers they did not come with music and cheers.

We all have endings to things in life - all good things must come to an end  - and all that, but how you say good buy - how you end something makes all the difference.  Also - the reason you end a particular thing is important as well.  Mary is moving on in life and doing some things she really wants to and she leaves feeling loved and missed.

I think back over the last two decades and remember loosing the only job I had held in my adult life - I had worked there for over 17 years and I loved my job.  But, having said that, I knew that I could no longer do the job due to my illness and I knew that I was laid off - more than likely because I was not well and the company needed to regionalize our department and it was known that I would not be able to meet this challenge.  I came to believe that was the best thing that had ever happened to me and the right thing......but the loss and resulting mourning were inevitable and I can still reach out and touch those feelings.

Again a few years ago, I was forced to give up my administrative business after 14 plus years because my health continued to become more and more unpredictable which makes me unreliable.  Again - no balloons or music - no fancy send off - just loss and pain and mourning.

While watching Mary Hart's tremendous, although somewhat sad ending, it is clear that this is a celebration.  I have to admit to myself that I feel cheated - I have worked for over 34 years of my life and illness has cheated me and taken away any pride I could have relished in moving on from these endeavors.

Well, Mary has moved on already to her new life and I am cutting that pizza and ready to put this out of my mind once again.  I know there is nothing to gain by wallowing in these feelings of loss - for those of us who suffer from unacceptable, invisible illnesses, our time for celebration has not come.  We must pat our own backs and know and believe that we did what we could at the time.  We have to keep moving through life and do what we can to accept our new situations and appreciate them for the value they bring to our life.

If anyone had told me 20 years ago that I would not be driving, rarely leaving home, depending on someone else for my transportation and making many of my decisions for me, I would have said NO WAY!!!  Well Mary Hart - my reality may not be anyone's dream, but it is doable and it can be the best it can be and I am thankful each and every day for this life.  As I learned today from another person ending something in their life (Oprah) - we must inhale.....don't just breathe.......take it all in!

Pain is Now in the Small Things.....

For a long time now, I have been able to control my pain somewhat by what I do physically.  This past December that came to an end - abruptly and does not seem to be changing....the hard thing is that I am not sure why.  I would suppose that is the question we - those who are afflicted by these chronic illnesses - ask most often.  What did I do???  What changed???  I didn't do anything different we tell ourselves.  As a long time member of this club, I can tell you there is no reasonable explanation on why things change for the bad or even the good.  We must learn to roll with the flow and just play the cards as they are dealt each day.  I try to make light of it and that is how I deal - your coping method may be different but as long as it works for you, that does not matter.

Please don't think I am complaining when I say this - this is just reality and I express it only in the hopes that if we can voice our realities then we help each other.  I know for me, it is so comforting to know that I am not the odd ball - I am somewhat in the norm somewhere.

The badge in this post is from my hero Misty - she creates these to give us a laugh and to make us feel better, if only for a bit, and to voice what we think each and every day!  I cannot tell you the number of times I have been told - But you look great - HA I say!  You don't see the extreme dark circles I have labored to cover and the way that I used to look - I was not always an old hag - really...;o)  Anyway - I know we all do it - we make assumptions, opinions about what we believe about others and I do it too.  But.....having said that - please try not to.  You may see me and say I cannot believe she is disabled or sick at all, but come and spend 24 hours with me.....you will walk away enlightened.  I am sure that is true for most of us - we compensate and work hard to be as normal in our appearance and in what we do when we are "on" but that is not our reality. 

As I have droned on here before, my reality is one of sleeping 12 hours or more a day and not because I am lazy but because I have to so that I can have a few alert hours each day.  My reality is being in pain just doing normal things like washing dishes or emptying a dishwasher, falling unexpectedly, forgetting what I did 5 minutes ago, being extremely irritable for no reason at all, only getting dressed when necessary, rarely wearing shoes because of the pain, and I could go on and on.......but I won't.  Aren't you glad.....;o)

But just know that when you see someone like me and make an assumption that they are fine, just remember that NO one would chose to be this way - We survive and make the best of this life and smile and go on because what choice do we have.  For our sake and that of our families we put one foot in front of the other and just hope that most people are not STUPID!  ;o)

What's In Your Basket Today..........

While I was reading a devotional yesterday, I saw another way that we can look at our issues and make decisions about how we are going to deal with them.  No matter what our life involves, each day we have our own daily events, symptoms, family situations, etc. to deal with.  I have read a lot about the spoon theory and I do love this comparison and explanation from the But You Don't Look Sick web site.  Another take on this idea for me now is What do I have in my basket today and more importantly how will I deal with my basket----how do I choose to deal with the items in my basket each and every day.  Because, you see, the way we deal with it is so much more important than what is actually inside.  This is a hard concept at times but so true.

For some, their basket may overflow with pain, frustration, different symptoms along with their regular daily life.  Some days my basket is like that but many days there are more good things to contemplate.  I used to tell my husband that each day I could throw all of my myriad of symptoms into the air and see what landed in my lap for that day - you just never know.  One day, I may feel okay not be as tired or weak and get a few things accomplished.  The next I could be in pain, exhausted, sleepy and depressed all day long.  On another, I might experience something that is new to the mix and totally unexpected.

So - I am trying hard - its not always easy - to look at each day and take a peek into my basket to find what is inside for me - there is only one thing for certain - and my basket can change as the day goes on - but there will surely be obstacles and issues along with other daily things we all experience.  Now - what I decide to do with my basket and how I handle it is all so important.  If I let it overwhelm me and don't take charge then it will over take my day and I will loose more time in my life.  But.....if I take it by the handle and decide how I will handle its contents for today ---- just for today, tomorrow is another day and another basket, then I can make better use of my time, enjoy this life as much as possible and become stronger and better able to cope.  It is an exercise and the ability to deal with our basket gets better over time and it does get easier - day by day and basket by basket.  What is in your basket today and how will you deal with it?

Falling Down, Falling Down.........

Nope - I am not talking about the children's nursery rhyme and I am surely not My Fair Lady.....;o)  It seems that I seem to be falling down at every turn lately and although I have been very lucky about the damage it does, it is a little disturbing.  I know this is common for issues like mine but it is getting pesky.  For the first time, last week I fell face first --- I still cannot figure out how that happened.  I was walking and then the next thing I knew is the floor was coming to meet my cheek very quickly and there was nothing I could do.  What a loud boom!  I know the holiday rush makes it easier to over do and get hurt - but I am trying to take my time and take it slow - not always easy.

Since then, I have fell a few more times and this morning I found I had a huge bruise on my ankle and foot and I cannot remember for the life of me, hitting it.  Does any of this sound familiar.  I know my balance is a problem as it is for most but the frustrating thing is that there seems to be no warning - one minute all is fine and the next I am speeding to the floor or hanging onto whatever I can grab. 

Solutions - well for one a cane is a huge help but I am embarrassed about using one because I feel that people will see me and think that I don't really need it.  Most of the time I don't, but who knows when I will......so the smart thing would be to be prepared.  We can't worry about perceptions - it is important to do what is best for your particular situation.  There will always be grumbles and misunderstandings about these conditions and if I had a dollar for every time I have been told "I have some arthritis too" or something similar then I would be very well off. 

I believe the lesson here is - do what you need to do in order to take care of yourself - no one else can make those decisions for you.  Your doctor can help you find the best solutions and possibly save you lots of black and blue marks!  Take care during the Holidays and enjoy - just don't over do --- Christmas in a cast won't be fun.

The Squeaky Wheel Gets the Oil.....

Yesterday while feeding our various pets (we have a zoo) I was reminded of the old adage, The Squeaky wheel gets the oil, meaning the one who complains the loudest and longest gets attention first.  We have two dogs and two cats - crazy, I know - especially for someone like me but they bring us so much joy.  Back to my story - the dogs - Maddie a Jack Russell and BJ - a Beagle-Jack Russell mix are normally always first.  As a matter of fact they get so excited about their breakfast that I don't feed them unless there is no one else around to do it.  They knock me down, cause me to spill the food and then commence to fight over the bowls and who might have more......then they beg for treats - bones, etc. - non dog food type stuff and believe it or not they both Love carrots - the little tiny sweet kind and will literally attack you for one.

Then there is the old cat who lives on the back porch - she just turned 19 on March 17 - no, really!  She is a calico and we got her when she would fit in the palm of your hand and she had a Siamese Daddy - quite a mix.  She is living on the porch now because it is warm and it helps her old bones and because she can't remember how to use a litter pan -- and we all know how that story ends. She is also very noisy like most Siamese and she makes the long MEeeeeee-OWwwwwww sound that will wake the dead and reverberate your brain.  Then there is the baby - Jessie - she is a tuxedo kitty and just turned 5 years old.  We got her at 5 weeks when we thought the old one was dying once again but turned out to be on her 15th or so life.  This little fat kitty does not meow or fuss or cause any real problems other than scratching a little now and then.

So when it is feed up time and I am handling the duties, I notice that she quietly watches me feed the others, tries to stay out of the way and then she makes a few little peeps and looks me in the eye as if to ask - my turn now?  So yesterday, I explained to her that the others make more noise and trouble so that is why they get attention first.  She turns her head sideways as she often does and looks at me as if to say "that's ok - as long as you don't forget me" - so sweet.

That brings me to my point - maybe those of us who have the invisible illnesses that we do, don't get the attention we need because unless we fuss and complain and call attention to ourselves, we are not noticed.  Personally, I have had a problem with that because I don't like complaining so I figure I don't want to be that person.  But......in this case we all must make an exception.  If you are ill and the problems are not apparent, you must stand up for yourself - be vigilant - keep track of your symptoms - call them to your health care provider's attention - don't sit and wait for them to be discovered because I am here to tell you it more than likely won't happen.  In this instance you must be the squeaky wheel and don't stop until someone comes with the oil can!!

Some Things Get Better While Others Go Down Hill......

For most of us, each day brings new challenges and struggles - for those of us with autoimmune issues, these can be complex.  It always amazes me that I will have a day or two that is fairly good by my standards, and I fall for the joke my body plays on me.  I start to think - am I better??  Am I really sick at all or is this all in my head?  Maybe I can do whatever I want and I just don't realize it.  Maybe all of my symptoms and conditions have disappeared and I was not aware of it.  Then --- as suddenly as the good days came, they are gone and the wave of pain, fatigue, confusion and too much more flood me with the reality that it is not in my head and yes I am still just what I thought I was  - someone who is very limited in function.

What is worse is when I begin to believe that I can do what I dream about doing -- over doing --- then I am quickly reminded what the cost of over doing is!!!  Days or even weeks of more debilitating symptoms than what I normally experience on a daily basis.  Therefore, we walk a tight rope - do enough to help but don't do too much.  Add to that the fact that this can be a different equation on any given day - it is not a sure thing or something that we can know for sure at any time.  Today - maybe I can wash and fold a couple of loads of laundry and be ok - tomorrow that may be too much.  It is all trial and error and more trial.  I tend to push the envelope and I personally believe that is I why I am not completely bedridden, but it could also be why my condition is moderate to severe rather than mild - who knows.  The only thing that I know for sure is that I am going to try to live this life that I have in the best way that I can as long as I can take a breath.  I would rather push a little to stay alert and enjoy my family and I believe that we each have to fight so that this monster does not over take us and take over our lives.  Don't ever give up the fight!  That is what keeps us going.