So Much Joy and Some Tears....

This year has included so much joy for our family as two of our four boys will be married by year's end.  The first was in April in the beautiful Spring we enjoy here in the South.  The second will be a wonderful Fall wedding which is also a gorgeous time of the year here as it is cooler and the leaves are bright and colorful.  So that means that three out of four have found someone to share their lives with and we are so very fortunate to have such wonderful young women in our lives.

This year also has ushered in the final year of high school for our youngest and he will graduate next spring.  My how time flies and it truly does seem like yesterday that he was toddling around in diapers with a toothless grin and bald head.

Sadly - these happy occasions with all of the accompanying joy and love also bring about tears and frustration when you have a chronic illness.  Now I realize these are tearful moments for everyone, but for me, I shed a few tears here and there for different reasons.  There is the frustration that comes when we cannot afford to do as much as we would like for our boys because Mom hasn't worked for almost five years; there is the sadness I feel when I can't physically do things that I would like to, and be involved in their activities and festivities; and then there are the tears when at the end of a wonderful day of joy I am racked with pain and stiffness that will keep me from sleeping and the impending doom I will experience knowing that this overdone body of mine will revolt and remind me that it is no longer capable of doing what I so long to do.

But along with all of the tears, we experience the joy of our children and the fact that I can be present, even if in a limited way, and enjoy these triumphs in their young lives and make memories that I hope will be with them for a lifetime.  As with anything in life, we all have valleys and peaks and as I have been told, without the valleys, there would be no peaks.  I chose to embrace it all and enjoy every minute for life is short and time will not stand still for anyone.  As the old song goes I wouldn't have missed it for the world......

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.

It is Definitely a Christmas Miracle!

Last week I was working hard to try to prepare myself for my social security disability hearing and worrying that I would not be able to convey what is in my head to the judge.  I read so many things online about the hearing being the best possible chance to obtain benefits - my one and possibly only chance to plead my case.  Up until now all of the decision makers who worked on my case had only ready about me on paper and in the beginning had a few phone conversations with me.

As I have told my dear hubby many times, if anyone told me this story, I would have a hard time believing they were really experiencing all of the symptoms that I do on a daily basis.  Telling your story and having the judge believe in you is key and when you are a bit confused and very forgetful, that can be a very tall order.

Well, miracle of miracles, I got a call last Thursday that the judge was reviewing my case and had a couple of questions about my onset date.  After my disability advocate with Allsup and I discussed this, she said she would send the information to the judge and.........it may be possible that he would make an "on the record" decision and I would be approved without the need for a hearing.  Did I hear her right?????  After years of going back and forth on this (I first applied in January 2007), was it finally going to be over and end in my favor???  You can imagine - I was on pins and needles with my little laptop in my lap for the next half hour or so and she and I emailed back and forth a couple of times and then she said the magical words I longed to hear - "you do not need to appear at the hearing, there will be no hearing - congratulations!"  I was numb and truthfully I still am.  I guess I won't believe it until I see it on paper, it is surreal - a miracle of enormous proportion - not just for me but for my family.  I cannot express my amazement and thankfulness completely here but believe me when I say it is huge!!!

So may things run through my mind - will they call me and tell me they made an error and we have to start again - hopefully not!  I look at the future with some hope that I will finally improve, that maybe my family can have a somewhat normal life ----- normal by our standards anyway.  It is more than I can fathom at once and it will take time for all of this to sink in. 

The one promise that I made when all of this began is that I would do everything that I could to help others who have traveled along this path - those who are not as fortunate and those who are still hurting and in need.  I will not forget and I will continue to fight for those who have not been as fortunate because we must remember that we are all in this together!

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.

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.

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!!

Moving Onward.......

Last week I found out that my appeal with the Social Security Disability filing had been denied. This means that I will have to go to court and appear before a judge. I don't really mind doing that - it does make me nervous, but I welcome the opportunity for them to see me and let me answer their questions. ONLY problem is.......the wait to get a hearing is 8-36 months with a national average of 19 months! That is just unbelievable and I am sure it is worse right now due to all of the money problems we are all having. If I didn't have to, I sure would not be filing.

Having said all that, I do feel that I worked hard for over 32 years and kept working long after I was first diagnosed and should have quit years ago. Now that seems to be causing me a problem - both statements that I received from the SS states that I should go back to what I was doing. Believe me if I could - I would.

The little car above is so dear to me because it reminds me of what I used to love doing - going for a drive - run to the store on a whim, take my son here and there. Now I can't drive unless it is absolutely necessary and very rarely do and only close to my home. It is just not safe and I realize that but it is so hard.

Sometimes I even get an idea in my head that I will just run to the fabric store and browse - something I just love to do. Then when the reality sets in that I will have to dress, do something with my hair, put on make-up and then still have the energy to drive out and back, I just give up and don't go. On rare days when I am able to get out, the freedom is so wonderful and I think I can just do anything. Unfortunately within about a half an hour, I know that I have to return home or I won't be able to get myself there.

I would suggest to anyone in the same situation, to try to do all that you can to provide information to your disability advocate to get your case before a judge quickly. Also - find something that you can do and enjoy each and every day. Above all, I have learned that if I concentrate on others - even just doing small things for someone else, then I don't have time to feel sorry for myself. Each and every day I am thankful for my many blessing as we all should be. There is always something to be thankful for and show gratitude for! At least for today, I will count my blessings and think about what I can do rather than what I can't!

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.