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?

Before You Know It..........

When I was young and I would ask my Daddy a questions about time, his answer was always "Before you know it".  As I get older I have realized that is one of the most profound things he ever told me.  We would be driving somewhere and I would ask - "when will we be there?"  - his answer would always be.....before you know it.  When my boys were young they would ask "When will it be mornin time?" -- before you know it....one of my favorite memories - I can still hear their tinly little voices.  That became our ritual with their prayers and tuck in.  When I asked one of the boys last night if they remembered this, it hit me that this one statement is so prophetic and just a good no nonsense piece of advice

When will I be all grown up?  When will it be Christmas?  When will I get married? 
When will my children be grown?
When will I be old and gray?

When we are young, adults always tell us to enjoy every minute because time passes so quickly and you must make the most of the present.  It seems like just yesterday, I was young with babies in my arms - 4 sweet little boys and I blinked my eyes and they were graduating and grown and it truly seemed like it was before I knew it!"  Don't waste time hanging out in the past or dwelling there --- nothing good can come of it.  Try not to waste time worrying about the future because tomorrow it will be here and you will have lost time in the present worrying about it.  Live each day to the fullest - find the good in it and count your blessings - even though some days they may be hard to find.  As my hubby always says age is a high price to pay for maturity but we don't have to wait until we are old to enjoy it.  All of this sounds like so much trite advice and just cheery nonsense but it is more true than we know.

All of this came to me when I was mulling over the fact that I had been in the throws of this illness for at least 20 years....wow 20 years - I have let it define me and let it push me to let life pass me by.  There is no excuse for it and it is my fault -- no one elses - sort of a subconscious decision - not one I have made with thought or intent.  Well - we all have to be present in our lives and along with the daily fight remember that you have to take time to live your life and make most of it.  Make decisions with living in mind - not submission.  Poke the bear, smile, laugh and enjoy because no matter what we do, good or bad......it will all pass us by Before you know it!

To Be or Not To BE.......

Last night I stumbled upon a Facebook page that really startled me and I have to admit that it makes me very anxious.  To make matters worse, I clicked on the infamous "like" button before I realized what it really was.  Very foolish use of my "likes" and now I cannot stop this garbage from arriving on my News Feed on a very regular basis.  The page was a rant against those with Fibromyalgia - sounds tame enough but for those of us with these invisible illnesses it is the very thing we fear and deal with on a daily basis.

This experience brought to mind when my oldest son was a teenager and we took him in for braces.  We knew that he had several rotated teeth and definitely needed the braces, but we had no idea how bad it was.  When my husband and I sat across from the orthodontist and he showed us the castings of my son's mouth, we were shocked.  I asked the Dr. how in the world all of that could be going on in his mouth and you really couldn't tell it.  He said without hesitation, "he is compensating" - he has learned to hold his mouth in such a way that you cannot tell that he has a tremendous over bite to say the least.  Several years later we learned that he had done the same thing with his ADD - he never showed any of the usual signs of over activity, etc.  He was so well behaved that we should have known something was up.  ;o)  He was struggling so hard to stay in control and handling things on his own but it would have been so much easier if he had been able to get some help.

That brings me back to our Facebook hate monger - he is the epitome of  what we all believe that others are thinking.  So, as a result, many of us hide our illnesses, compensate and pretend that we are fine.  So much of the time, only our families and closest friends know what we go through and how we all suffer.  I did this for many years to keep working - I was told time and again that I would lose credibility and my work if I didn't do that and funny thing is ---- I lost it any way.  I worked way to hard, did way too much and over compensated and it cost me - big time.  It made it harder to fight for my Social Security Disability, made it harder in the long run for my family and has taken away any pride I had in the work I did for over 14 years.  It also ravaged what little good health I had left.

But - the hero in this story is a friend named Misty Roberts - she puts herself out there for us - she becomes our voice and stands up for us when we are unwilling or unable to do so.  She takes on all of the bad guys and is not afraid to take the barrage of ugliness that some are willing to throw our way.  So - we all have to decide if we can Be who we really are or continue to compensate - over compensate to keep the peace.  I am not a good example and I have been embarrassed and unable to be honest about my health, and I surely am not advocating whining and complaining - that is not good for anybody - as my MIL would say - "That ain't never good" and she is right.  But - we can all find constructive ways to have honest productive communication about our illnesses and work to move forward in the understanding that doctors, family, friends and the general public need to have.  Misty is the perfect example of this and we can follow her lead.  Her web site is http://fmcfsme.com.  You can also find her on FaceBook.  If you want good honest conversation and information, this is the place to find it!  She is our Angel in a sea of criticism and speculation!

To Do or Not To Do........

The week of July 4th is always a very busy time around our house.  Three of our four boys have their birthday and with the holiday it gets a little crazy.  I do love it though!  The problem arises each year when I try to do way too  much and don't listen to the signals that trouble is coming.  None of us want to believe that we can't - I remember my Daddy saying "Can't never could" to me when I was little to discourage my whining and saying "I can't" which I often did when faced with new things.

The odd thing about chronic illnesses is that most of us continue to try to do things we know we cannot and we refuse to accept our limitations.  That makes life difficult for us and our friends and families.  But.....there is a fine balance here - we still have to try and push to do whatever we still can because if we completely give up we won't be able to.  So - each holiday, birthday, event, etc. we have to reassess what we can do on this day, this year, this particular time and try to make the best decisions.  Not always easy and I tend to err on the do way to much side and pay for it later.  I am told this is typical for those with these types of diseases.  Someone in a support group I belonged to once told me that if you don't want to do anything and don't believe you can, you are more than likely depressed----but when you want to do so much and try but can't, it is more likely you are physically ill - I believe this to be true.

So this year I did and I am glad that I did and we had a wonderful day to celebrate the 4th as well as three birthdays in our family - all together.  By some standards, not a big celebration but wonderful all the same.  At the end of the day, I felt good about the efforts I was able to make and I believe in pushing myself and fighting because "can't never could".....

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.

We Have Hearing Date!!!!!

Our Date is Tuesday, December 15th, 2009 -- We finally got the call we have been waiting for yesterday --- I still can't really believe it, but it happened!  I have been fighting for Social Security Disability for 19 months and it has been a hard fought battle.  My disability advocate had hoped that we would be able to get it without having to go to a hearing but that's ok.  I welcome the opportunity to tell my story - I am just hoping and praying that we will have a fair and open minded judge and the hearing will go well.  I get butterflies in my stomach just thinking about it - I am sure as the date approaches that will get worse but it will be worth it in the end - hopefully!  I am one of the lucky ones - my hearing has only take about 8 months to schedule - many in our state wait for over 20 months to get a hearing.

I have heard stories of things like this and I never really appreciated the gravity of the situation.  You just cannot imagine until you walk this walk.  This has really given me a new appreciation for anyone dealing with issues with their health and the dependence on the system for their well being.  In this country, so many of us are used to being in control - control of our lives and everything related to it.  There are always many factors that we just don't control - the weather, accidents, some illnesses, etc. - but at least most of the big stuff is in our hands.  When you loose your ability to work things change - you give up independence in many ways and are at the mercy of many people you don't know and will never meet.  For some of us that becomes a very frustrating journey and for many it turns into a long struggle.

I heard myself telling one of my doctors this week that I just did not want to be THIS person - I didn't want to be the one who was begging for disability income, who wore the label that says I can't work, the one who appeared to be useless to family and friends, community, etc.  I used to be a hard working, law abiding, tax paying wife and mother.  I worked for over 34 years of my life and paid my taxes - for 14 of those years I paid taxes as a self employed worker which means I paid in more as there was no employer to contribute.  Now that I am damaged, I have to beg to get back some of what I paid in and made to feel as though I am somehow asking for help that I am not entitled to.  This makes me angry and many like me but I fight the anger and try to be patient and I wait and I wait, and I hope that this decision will be made while there is still time to to try to repair some of the damage that all this waiting has done to my health.

Thirty-seven days from today a total stranger will sit in judgement of my situation and my future - I can only hope and pray that this individual will actually read the facts, actually truly know what is going on with me and will understand.......enough to allow me to receive some of the benefits that I have already paid for, so that I can try to piece the me, that I used to be, back together.......in some way.  I am so very thankful for this opportunity but I proceed cautiously because I cannot afford to get my hopes up again - each denial, each disappointment takes way too much out of what is left of me and that is just not fair to my family because they walk this walk with me, even though this is not what they signed up for.  So, we will count down the days with guarded hopeful anticipation and continue to travel this road and have faith for better days ahead.

Downwardly Mobile.......

Well as times goes on, we continue our path to being more and more downwardly mobile.  I guess that is a term that will mark this time period in history and we will all become too familiar with what the meaning is.
We all probably know someone who has been hit by this economic down turn and that is putting it mildly.

But what about the people you know who have the added stress of health issues and add to that the great health insurance dilemma.......then you have a snowball that becomes an avalanche.

It does not happen over night......usually it creeps in, one step at a time and then one day you look back and realize that you can't remember what one thing really started the decent and you know you may never be able to stop the fall.  You wonder if you should just roll on down and stop fighting the pull, the force that keeps you moving until you hit that hard rock bottom.  But.....would it be easier to let go - it is hard work to fight gravity...almost impossible but you continue anyway because that is your only choice.  It is not just about you and for your family, you continue each day two steps forward, three backwards and all the while, you keep hoping that one day you will wake up and the illusive disability money you have been fighting for will show up, your insurance will pay for your necessary and needed medications, tests, etc.  Things will not be quite so hard - you don't expect perfection or anything close to it - just not quite so hard.  But, you are ever so aware that you are very blessed - you still have a roof over your head, food to eat and loved ones.  While you are in danger of loosing those things - for today, they are still yours and there is still hope that you may begin a short climb back up - maybe you won't hit bottom - maybe you will just end up in a different place.  That is not always bad - just different.

Now you are just thankful to have some connection with others, some sort of phone, possibly an internet connection, cable television - those are all things that will go soon if your situation does not head in a different direction and you know that the lack of communication and exercise for your brain will make your health situation worse - the fear of the long hours without these distractions is scary - but still it could be so much worse and you know that.  You know in your heart that those are actually luxury items and just because one of you is working, that does not mean you can afford those things - life is hard and you have hit a rough spot.

It is funny - I thought of this blog entry while I was dealing with trying to change or get out of a cell phone contract that we had and could no longer afford.  With so much job loss, I know there are others who are where we are and I wonder how we will continue to afford these essentials that we have become used to.  Maybe we will have to make choices - I already know that of the three, I would choose Internet access without a doubt.  My 14 year old tells me the same.  While a phone is wonderful for keeping track of our loved ones, I have never been a real phone junkie - maybe when I was 14 but not for a very long time.  But - the Internet can give you entertainment, news, information, ways to do all that you can to protect your health, email to keep up with those loved ones.  For me it is a no brainer, but everyone in this situation will have to make this decision for themselves.  I know that if I were still able to work, my choice would still be the same because when I worked, I was online all day with my work.

Yes - the convenience of all of the other wonderful gadgets is so nice but not necessary and we will survive as best we can.  We will all learn to make a way in this new world that we find ourselves in and move forward in a different new way - not necessarily a bad way, but a different way.  Could be we will find other ways to make up for what we have lost.  I have to believe we will.

Good Times...Old Friends...

I have been remiss, out of touch lately and have let my blog down. I just haven't had the words...thoughts that would propel me to write the way that I normally do. I have let the depression and anxiety that befalls many who are chronically ill, get me down and keep me there. I have not had the strength to fight the fight in the best way. But......then, out of the blue, this past week I heard from a very old friend. She is not very old - our friendship is. We knew each other as children attending the same church, same Sunday school class, growing up together as children of that era - rarely missing weekday church school or any opportunity when the dark red Lutheran church doors were open. In our time, that was our social life, our touchstone to a life outside our families and it was good - very good.

When I think back on those times, I can pull countless memories that were exceptional, full of just plain fun, craziness and love of live. All of the crushes that we thought we would never survive, dealing with our parents, siblings, starting middle school and high school. We knew each others parents and even grandparents and visited each others home on a regular basis. We were the kind of friends that you don't have to pretend with, that you could spend hours with on the phone gabbing about nothing and everything.

Well, we graduated from high school and went our separate ways and lost touch and 35 years have passed and so much has changed but many things still remain the same. The thought of this type of friendship brings a smile to my face, a bitter sweet look back - glad to be grown and away from those awkward times but a little ache to go back there, even if for just a day or an hour. To feel the breeze in my hair (awful frizzy curly hair in those days) and still have wonder about what would lie ahead. To listen to our favorite songs - The Carpenters - and dream of our true loves, and dance to the Osmonds and The Jacksons and swoon over lost loves. For us it was the Coffee House at our church on Saturday nights - om my gosh - dance and drink sodas and just have fun - anything was possible.

Not many adults retain those types of relationships and it is a shame. There should always be someone that you could tell anything, talk about absolutely anything and not worry about ridicule and feel the embrace of friendship. My husband is now my best friend and I feel so fortunate to have him.....but my heart does still ache for the friendship of childhood. Just a taste of it and the memories come flooding back and I feel whole again, even if just for today, I feel normal - whatever that might be and I feel that I lived in a time when we cared deeply and knew what true friendship was.

Insurance...What a Beautiful Thing!!!

Well, after 7 long months, I am eligible for health insurance today!! I have never been so excited about seeing a doctor, with the exception of when I was pregnant. I am so relieved that my husband and son are again covered and I am so hoping that some new meds and tests that have been put off for far too long, can make a difference in our lives and in my plea for disability income.

I don't go out much, but right now but I am so looking forward to having blood work done and getting my check-up because this will hopefully mean that I can begin to improve - at least somewhat. I have been on a decline for about a year now and I know the lack of insurance has definitely added to the problem.

It is so odd that we take things for granted and don't appreciate them until we have to do without them. Having chronic health problems, you really take for granted that you will get the medications you need, that you will be able to go to the doctor when necessary - which is quite often. In the last 7 months I have not been able to do this and the two times that I did go in it was quite expensive for just a prescription refill or to have forms completed for my SSDI.

When your child runs a fever, a fear strikes you when you don't have insurance - even more so than normal. How will we get meds, how will we get him to a doctor??? I am just so thankful to have this period of time over and hopefully not to have to endure this again anytime soon. This experience has so helped me to realize the plight of so many and my desire to find solutions. This is something we all have to be cognizant of because we are all in this together and must work to help each other!!

Spring Things To Do...

It was another blustery day here with lots of rain and clouds but a nice day just the same. Again my little bird friends outside my little window make me smile. They were busy as usual today doing whatever it is that birds do and the squirrels were running all about digging things up and burying others. The Blue Jays were in the trees making their warning noises to scare all the cats away. My front and back yard seem like critterville this time of year and I just love it. It is sort of odd though - we are in the city, close to a traffic filled road but still we have so much life going about their daily business in our yard - even small brown rabbits can be seen scurrying about at night trying to remain in the shadows with their white fuzzy tails lighting up the darkness.

All of this happy activity makes me feel a little sluggish and slow at times but most of the time I feel the joy that these creatures have in their simple daily routines. My routine now is so much more simple than it was even just a little over a year ago. My husband and I have a routine worked out - he works a good many hours as a retail manager of a large grocery store. So, I try to do what I can to make his days a little easier since I am not working any longer. I don't always succeed but I always try. My goals each day are to get out of bed (first big hurdle of the day!), get my 13 year old up and off to his bus; remember to brush my teeth, :), try and pick up around the house - things like dirty dishes, laundry, etc.; make the two beds in our house and help get things moving toward some sort of dinner for the 3 of us. I would have laughed if someone told me a year ago that that was all that I did all day!! If my day is really good, I try to throw a load of laundry in the washer and try to remember to put it in the dryer and I put some clothes aside for my hubby to wear to work the next day since he is normally out the door around 6:00 AM. And last but not least, I try to plug in his cell phone to recharge for the next day and have his coffee set up for the morning. It is hit and miss and some days I get them all and others none but I always try.

This all may sound mundane and trivial but for me they are small accomplishments that help my family and keep our little house running. They are the contribution that I can make to this family and feel needed and somewhat useful. We all need this - just like the birds and the bunnies - a since of importance for someone - a job to do. At least for now, I am just thankful to be and to do what I can with the hope that I can make things just a little easier for my family.

Struggling to Put the Pieces Together...

It is the Saturday before Easter and I have been trying to clean up a little in preparation. Unfortunately with my being so slow, I don't feel like I make much of a difference. My youngest son (13) is helping and that is so appreciated. I find myself very frustrated and irritable today and the cause of those feelings lie in researching my illness and trying to understand what is going on.

For some arbitrary reason, I decided to look up M.E. this morning - that is the newest name added to my litany of symptoms, etc. It is fairly common knowledge that Chronic Fatigue is for the most part referred to ME/CFS now. I decided to find out what the new name means and what it could mean to me.

Keep in mind that my quest for knowledge is mainly to try to get the pieces of this puzzle that has become my life, in an orderly group....to seek to understand and help my doctor to understand. Well, I almost fell out of my chair when I stumbled upon something called A Hummingbird's Guide to M.E. ~ Myalgic Encephalomyelitis. I could have written the symptom list myself from my daily life. Why can't the SSDI people use this information in deciding my case. If you have this or know anyone who does, then you will want to read this group of articles. It is very eye opening and will begin to bring sense to this illness that many of us have not had before. It also has links to more sources and information.

I have had my head in the sand for a good many years now, and I believe that all of us with disabilities must be our own advocates - we must use our last ounce of energy and intelligence to research and assist in our own treatment. Otherwise you are destined to be misunderstood and denied your proper rights as a disabled individual. Rights that I would fight hard for in the assistance of another person and now must fight for so that my family receives the assistance and understanding they deserve in handling my illness. Be good to yourself and learn all that you can about your own disability or that of a loved one.

Off to See the Wizard.....

Well I went in to see my doctor yesterday - my Wizard of sorts. :) Since I have been without insurance since my husband lost his job last September, I have been unable to go in on a regular basis as I had before. We will have health insurance back in only 17 days - he has been working for his new employer for almost 3 months!! I can't believe it.

I got a call on Monday from my doctor's office telling me that I would need to come in on Tuesday - he had received another packet of information from Allsup (my disability advocate group) and needed help completing them. So, I went over and spent two hours there - I am so very thankful to have a doctor that would take the time to be sure the forms were completed correctly. I am so hopeful that it will make a difference and speed things along on the track to a hearing or at the very least a review by a judge. I am told that if a judge agrees to review without the necessity of a hearing, a decision could be made quicker than the time it would take to have an actual hearing. That would be wonderful!!!

My doctor wizard tells me that according to the paperwork we completed I cannot hold down even a simple menial job - then what is the problem with the Social Security Disability Income robots - I just don't understand......I know they are trying to do what they think is correct but it is all too frustrating to those of us wait and hope that we won't lose all that we have while they take their time making decisions that determine our lives.

Enough grumbling - I am ever so thankful for my doctor and his staff and for the group at Allsup. I will pray and hope for the best. Each step along this journey has been a learning experience and I hope that I can help others who walk this way with me. At least for today, I will remain optimistic and hopeful and search for ways to make the travel easier for all of us.

Birdies Again Remind Me To Slow Down......

It is very blustery here today - wind coming in gusts blowing all of the trees around. It is a beautiful sunny day - just a little chilly. It would be a perfect day to fly a kite out of site! My 13 year old son is out of school on Spring break and we ventured out today to make a short trip to the bank and put gas in my car. Since I rarely drive, it was a special treat. We took along our two dogs on our little outing.

When we pulled into the gas station, as I was pulling up to a pump, I happened to look down and there was the tiniest little bird - possibly a sparrow. He was, with all his little might, trying to drag a cup cake wrapper off with him. The wind was trying to take it in the other direction but he would not give up on his quest to steal off with this goody at least twice the size of his little self. We stopped the car to watch him take little nibbles of the cake that was still stuck to the wrapper, gobble them up quickly, and then try his mightiest to fly off with the whole thing once again.

Finally we pulled around him to the pump directly in front of his and the entire time I pumped my gas, he worked on the tasty bits around the paper all the while bracing himself against a wind so powerful it was hard to open and close my car door. My dogs even noticed him and I could tell they thought "um - chicken for lunch" but they were interested in his hard work non the less.

After I finished with my gas and was pulling away another car pulled in and not noticing this brave little creature, they shooed him away with their vehicle, his cup cake wrapper left behind. I couldn't help but feel a little sad for him - all his hard work and he had to leave it behind. But - he had enjoyed a tasty little treat to stave off his hunger and he was on to his next adventure. What wonderful little creatures birds are - they are so happy just to BE! He put all of my whining and complaining to shame and made me again realize how so very blessed I am each and every day!!

What a Difference a Small Creature Can Make.....

I am reminded daily of the things that I am unable to do - I am fortunate though because it could be so much worse. People with Fibro and ME as well as arthritis can many times do a good bit for a short period of time. The problem comes the next day or maybe even later that same day.

This past week I walked out to retrieve my mail - a short walk of about 50 feet and on my way back I heard a little rustle behind me. Both of my dogs were inside watching me from the two windows on each side of the front door, so I knew it wasn't them. I turned to find the cutest little dog with scruffy hair and the sweetest little face starring up at me as if she knew me. Being a long time push over for anything on four legs, I reached down to pet her. I noticed that she had a little pink collar on so I was careful not to distract her so she would head back to her own home. She seemed so happy to see me that I couldn't help myself and I picked her up. Big mistake - she was just so sweet and lovable and by this time my own dogs were loosing their minds still watching from the windows.

I put her down on the side of our drive way just sure she would run back to her home, but each time she followed me back to my front door. I decided I would sneak in through my garage to keep my dogs from escaping with her. About that time my next door neighbor came over and told me that she had been abandoned and they could not keep her. Well I have a Jack Russell, a Beagle Jack Russell mix and two crazy cats so I knew that my hubby would not go for it.

Long story short, I agreed to take care of her until one of us could find her a home and then just as that was settled, she took off as if to say come on lets run! I forgot to mention she appeared to also be a Jack Russell and believe me those dogs are just crazy! I have barely been out of my house in months, much less running or even walking fast but off I went after this little creature. I am not sure why but I just had to save her. It is what I would want someone to do if one of my babies were loose. I chased that dog on foot for almost an hour and we went up hills, down slopes, through grass and all of my neighbors yards until I just could not chase any longer. My neighbor, whom she had become familiar with, was able to catch her and we tried our best to find her owners but no luck.

I sent out pictures of her to everyone I know trying to find her a home and my 22 year old son who lives in an apartment decided he would like to take her. So being a good Grammy, I baby sat for him this past weekend as he had a surfing trip planned. Well tonight, myself and 6 other members of my family were out chasing this cat crazy little monkey all over the neighborhood in the dark. Beside the fear of not being able to find her and how upset my son would be, it was unbelievable how we all came together because we all had fallen for this little sweetheart! She finally headed back for our house and my 13 year old tackled her - all 11 1/2 pounds of her crazy fuzzy little self. She was exhausted and ready for bed and headed home with my son and his long time wonderful girlfriend. Thank goodness a happy ending......until the next time she escapes.

My point in telling this story is that I would never have thought that taking this little being in could have turned my life so upside down over the last few days but it did. I am exhausted and I can barely walk and my arthritic joints are screaming, but ask me if it was worth it and I will say it definitely was. Sometimes, even though we know we shouldn't do things, and we know it is not the best thing for us to do....sometimes, just for today, we must because it is the right thing to do.....and in the end the benefit so out weighs the consequences. Hopefully I will still feel that way tomorrow.

Deadlines, Goals and Tickers......

Well it has been one year since I gave in to my disability and gave up the fight to be employed. In a way, it is comforting not to have to fight the fight, make the decision, doubt each day if I can do what I need to do to keep my job.......but it is also hard not to feel like a failure. Thus the struggle of fighting for Social Security Disability Income and that is a very long battle for sure.

My next deadline is 7 months, 3 weeks and 2 days away - that is the absolute earliest, I have been told, that I might have a hearing scheduled to help determine my case. The average is 19 months with a time frame of 8 to 36 months. I am amazed - I completely understand the system is backlogged and it is their responsibility to ensure that no one receives these benefits unless they are truly disabled. But.....for people like me that have the burden of proof - it is very difficult, demeaning and frustrating. I have worked for 32 plus years of my life, paid in my Social Security - double that of most in the last 14 years because I was an independent contractor. Now I need help and it seems so far away like an impossible dream. I do this for my family much more than for myself.

I am trying very hard to keep a positive outlook and "be the difference" but it is a daily struggle. I find myself thinking more about the battle I went through to keep my contract, my livelihood, to help support my family and it makes my angry. I have more dreams - or should I say nightmares of the conversations and disagreements with the board that I worked with under the association that employed me for 14 years and then decided to discard me like the trash we take out daily. I find that the feelings are still raw and I feel the urge to try to again make them understand - but in reality I know that I not possible.

Ok - enough of that! For those in my shoes, take one step at a time - try to find the things and people that you love, embrace what you still have and try - this is not easy - but try to put the past behind you and move on to a happier and better life! It is possible and most days I can do this with some effort - other days are a struggle, but all in all it is very worthwhile for my family and those that I love dearly!

There are Good Days and Then There are Normal Days.....

Yesterday was a really good day as far as my health. I felt a little burst of energy and actually accomplished a couple things. I cut up a batch of strawberries (before they went bad this time) and made a cake - before the eggs and butter spoiled from my leaving them out too long. :) For me that is an amazing day on the scale from good to bad. However - today.....not so much!

That is one of the most frustrating things about my particular illness. There is no real rhyme nor reason most of the time. Today is a normal day for me - dragging to move, very tired and sleepy and just not able to do much more than what is absolutely required. Days like this I spend in my old lazy Boy rocker watching HGTV and dreaming about the day when I will be able to paint and do things that need to be done around my house. My head throbs for no reason and I struggle to understand what is being said to me and to remember what I was doing five minutes ago. Who is this old person that I have become and where did the real me go???

I live vicariously in my day dreams - I remember that a friend on a chat group once told me that the difference between someone who is really sick and one that just thinks they are is that the one who is will think they can do anything and try and not succeed. That is me - always planning, dreaming, just knowing and believing that tomorrow will be the good day that I sew something and finish it, make dinner and not destroy it, have an intelligent conversation without having to search and drag the words from my brain, drive out on my own and not get lost or turned around. I have to have faith that the day will come at some point I will be able to remember to turn the stove off and have the energy to enjoy Grandchildren that I may one day have. For those like me we all have to have faith and believe because if we don't then we give up and I can't do that. Just for today - a normal day for me - I have to hang on and continue to dream!

Spring Has Sprung!!!

SPRING IS HERE!!

It's funny to think of Spring and how you change your feelings about it over the years. When I was young, it was my favorite time of the year. I still remember so clearly the Spring that I was a senior in high school - it was 1974 - oh that takes me back. I remember walking outside on a beautiful March day and feeling that life was anew and everything was reborn. I had lost my Dad one week prior to Christmas the year before, after a two year battle with lung cancer and it had been a very long depressing winter. At that time all of the flowers he had carefully planted in our small yard began to bloom and let me know that life would continue on.

Years later when I was working at an insurance company, I would always dress in my cheerful, flowery best on the first day of Spring - no matter what the weather. In South Carolina, it could be snowing on March 20th or it could be a balmy 80 degrees - you just never know. I remember a co-worker commenting on my Spring tradition and I was so touched that she noticed my mood and wardrobe change. I am happy to say that no one can see my wardrobe welcome to Spring now because it is a far cry from what it once was. I have to admit that the beginning of Spring often brings on a little bout with depression as I remember what it used to mean to me and lament on how my life has changed. But.......I cannot allow myself this little whine session for long because I have others to think about and I must put on a happy face.

I truly am thankful for many things these days, especially my family and my home and my computer which allows my brain to not be turned into a soft mushy ball. I am thankful for my friends - some whom I have never met, but they boost me daily online and keep me trudging the path that is now my life. They allow me to feel useful even when it is not true and they give me dignity that I have lost in so many areas of my life!

So for at least today - the first herald of Spring - I will put one foot in front of another and continue on my path - it may not be what I planned, but it is ok and I am happy just the same.

Oh - I Miss Dancing!......

One of the things I miss most about being a WAHM is dancing! Oh so much. I was never a coordinated ballerina like this little cutie but I just loved to dance! Beach music, soft rock, all that wonderful old stuff. I used to do conferences when I was a WAHM instead of a DAHM and there was lots of dancing and it was just plain fun!! I would look forward to the music and dancing for months prior to a conference. Oh well - I am watching "Dancing with the Stars" and living vicariously watching them do things I never could.

What else do I miss? I miss reading a book all the way through and remembering what I read; I miss being able to shower, wash my hair and go somewhere all in the same day; I miss driving - although I still can, I rarely do and only short distances on good days; I miss running and running and running - the great feeling you have afterward; I miss being able to cut the grass and get all dirty and sweaty and having a good hot shower after and then looking out at a wonderful clean cut yard; I miss having a really good nights sleep; I miss being able to clean my whole house in one day and then enjoying the nice cleaness of it all. Believe it or not, I miss working - the satisfaction of finishing up a project, doing a conference, working on a newsletter and then mailing it out myself.

But - I have to say that we learn to replace the things we miss, and there are many, with the new things we find in life. The window that God opens is so wonderful - even after the door has been closed. I have tried to start taking note of something each day that is new for me in this new DAHM life and being thankful for it. There is always my little bird friend, having time to visit graphic sites like my friend Carmen's - Shweet Potato Designs - it never fails to cheer me up. Look around and you will find many things in your new disabled life to be thankful for - it just takes a little time to appreciate. Just for today - look for the windows in your life.