What is Your Season????

For many of us with a chronic illness, seasons can make a huge difference in how we are feeling.  Some just love Spring with the color and more moderate temps and others love cold for some inexplicable reason.  For me, Fall is the season that I get the most relief from pain and allergies.  Well for most of us, Spring has sprung and love it or not it is here.

For many years I had a love hate relationship with
Spring.  While I enjoyed the color and life that showed up with flowers and weather, I felt Spring was mocking me.  Yep - there it is - how could the world be alive with color and beauty when I felt old and awful.  To top it all off, like so many I am plagued with allergies that exacerbate something awful in Spring.  They are with me all year long but Spring is the trifecta for me - runny nose, stuffy head and drippy eyes.  Ugh.  I have read many times that allergies are supposed to lesson as we grow older - something about the immune system becoming less effective so it doesn't fight the things our bodies used to rebel with as much vigor.  Sure - not for me - mine just keep getting worse.  Anyway - enough of the whining - there is a point in all of this.  Really.....

As I get older I am learning to embrace the good things that we can enjoy from each time of the year and put the bad ones on the back burner.  Now that sounds so easy but just like anything in life it has taken lots of time and practice over the years.  Don't misunderstand, next week I will very likely be complaining as I hack and sneeze but at least for today I am embracing the first day of Spring and so trying to enjoy all of the things on the love side of the list.

Now this is true with all of the things that bring on bad days and weeks in bed. I still believe in fighting for my health and I do it everyday but I have also learned that we must mine for the gold in each and every situation to make life all that it can be.  If we allow the pain and negativity to overcome us it will envelope us and we become powerless.  This past winter was difficult for me and while our weather here was mild compared to many areas in the country, it was tough for us Southerners who are not prepared for it.  I succumbed to a deeper depression than usual and confined myself to my bedroom for hibernation.  With a change in meds and an ability to see myself sinking in deeper and deeper, I have been able to grab hold of the side of the hole and begin to claw my way out.  I am not on solid ground just yet but I am feeling my feet beneath me again and as I look up to a rare bright sunny day I feel some of the pain easing away slowly - just as it came on.

For those of you who don't suffer depression as an aside to the effects of chronic illness, then none of this may make sense.  But......for those of us who live it and breathe it every day of our lives, you know these feelings well.  Get out and take a walk, make yourself connect with others, love those who love you and enjoy them.  Hug your pets and hold them close to feel another heart beat, feed yourself well and know that you are worth feeling better!  Above all learn to be kind to yourself because through that exercise you will know kindness and love for others and life will bloom again right along with Spring!

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?

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.

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.

Being Thankful.........

Today, more than most, we all have so much to be thankful for!! I am sure each and every one of us knows someone who has served our country in some capacity and can bring to mind sacrifices they have made to do so. Some - the ultimate gift - their lives.

For me, I am so very thankful - I have four wonderful boys who are all healthy and still with me - 3 grown and on their own and one still at home. I know there are many parents who are not so fortunate and have given that ultimate sacrifice.

On days like this, my mind wanders back to a sandy haired little boy who lived across the street from us years ago. He would come to our door to play with our boys and he was always so polite and a gentleman. His name was Josh - the same as one of my boys and I was always fond of him. He grew up to be a very big boy and played football in high school and did well during those years. He made the decision to join the military right out of high school. He had been in ROTC and this seemed a natural decision for him. I will never forget the day that I received a call from a neighbor from the old neighborhood that Josh had been killed in Iraq. I could not and still cannot fathom the pain of his family. Josh was a hero and a very fine young man and there are so many more like him.

No matter what our circumstances or beliefs on this day, we all need to pause and offer up a prayer for the families of those who have lost loved ones for our sake - to keep us safe from harm - to do what they believed in and so willingly gave the ultimate sacrifice!

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!!

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!!

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.