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.

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.

October is Breast Cancer Awareness Month

 The month of October is Breast Cancer Awareness Month and I am sure that most know someone, have a family member or have been touched by this disease.  Please take a minute to visit the web page below.  This book and site were put together by Regina Savage, a breast cancer survivor who has decided to make the most of her experience and reach out to others to help them.  She is having a wonderful contest this month as well as her Traveling Book project.  You will not want to miss this - you can check it out at the link below.  We are all better when we work together and we become richer and our lives more full, when we reach out to others.

Breast Cancer Awareness Month Contest at the Traveling Book at Quite Angel Publishing

An Open Letter to President Obama

Dear President Obama:

I am writing you to give you my perspective on health care - my own individual situation is not so unique, in our country today....it is the reality of many. I hope you will give me a few minutes of your time to read through my story. Hopefully it will serve a purpose of some kind for many who find themselves in the same place that I am. I voted for you in the last election and I support you, but even if I didn't, I would hope that you would listen and understand because I am the voice of many. Regardless of partisan relationships and all that follows, I believe and hope that you are a fair individual with the best interests of our country at heart. I truly believe that good will prevail, if not in my lifetime, then in years to come.

I am a 52 year old female, married for almost 25 years and I have four boys - 3 grown and on their own and one still at home - a teenager. But, I could be any age with any family situation. My name is Lynne, but it could be Sally or Sam or Tom - because you see I am the voice of many. You don't know me and I am not well known, but our government and medical insurance companies are slowly killing me and putting an end to families like mine across the country. Sounds extreme - I realize - but look at the facts.

Forgive me if this goes on too long but I have to get this out - this morning I woke up with the words spilling from my brain so fast that I could barely scoop them up and put them to paper. I must do this while I can, because tomorrow they may be lost like so many marbles in my head rolling around and never coming together.

I had to give up my job 18 months ago - my situation may be a little different than most but it is common. I was self-employed for over 14 years and as my health deteriorated, I was unable to do my job and no longer had the strength to fight for it. I was an administrative contractor for a non-profit association in the State of South Carolina. As a self employed individual, I was not eligible for unemployment benefits, insurance, or any other perks that our state employees or corporate employees enjoy. Although I worked for this group for almost 14 years and was treated as an employee, when I could no longer perform in the manner they became accustomed, they were ready and willing to throw me out like so much trash - such is the norm in our society. But...alas, that is a story for another day.

The long story short is that I was 51 years old with no job, no income and I was disabled - a disability which was partly made worse by the fact that I continued to try to work, to do the right thing - hold down a job, bring in an income, pay my taxes! I fought this disability for the last 18 years and it has become progressively worse. Unfortunately for myself and my family, it is an auto-immune condition and therefore I am shunned by doctors, friends, and others who say "But you don't look sick?" and because it is not all black and white and is hard to diagnose and treat. The particulars don't matter because they are different for all of us, but the results are the same. We can't work, we aren't well, can't get anyone to hire us, cannot be dependable as we once were, and live with shame because we can't help support our families and do what is expected of us. We are not dying today and probably not tomorrow....but we will die sooner than we should because we fall through the cracks each and every day! The test that was not ordered that could have shown a small cancer will be found much too late or the medications that could have been prescribed for the deterioration of a brain that could have been saved, were never given.

Well, less than 6 months after loosing my income, my husband lost his job. Now I know you are probably thinking that all good citizens should be prepared for that - right? He works in retail management and has all his life and there is no job security there. This is the 2nd time he has been out of work in the last 4 years and all of our retirement, savings, emergency money, etc. is gone! With the first job loss, he was out of work for about 5 weeks and we survived, but after six months of my having no income, we are drained dry this time. My medications and medical bills ate up all of our money in the bank as well as paying bills. He is a good man, guilty of nothing more than caring for his employees and trying to do the right thing. But in our state of South Carolina you can be let go for any reason - we are a work at will state. I am sure you are familiar with South Carolina - an interesting Governor to say the least, and congressman that is more worried about his republican constituency than the citizens who are hurting or lacking.

So, we were without income for approximately 4 months - and he finally found another management position in February of this year. While he is making a decent salary, it is less than what he earned before and we bring in less than half of what we once did. We are so very thankful for this job but..... we still continue to fall through the cracks!

After 7 long months without insurance, we finally were eligible in April - something to celebrate right? Well soon after we dished out the first big premium to Blue Cross and Blue Shield, we received a letter concerning pre-existing conditions. This is not much of a problem for my son or husband, but for me and others like me, it will mean that most of my medical will not be covered until January of 2010! They tell me that if they find any mention - just a note - about any condition that I was seen for during the 6 months prior to this coverage, they will not pay. I only visited my doctor's office 2 times during that period of time - once for a prescription refill, and the other for and update on paperwork for my Social Security Disability filing at the request of my doctor. Well - BINGO - that visit gives the insurance company all they need to deny everything for me for 8 more months. Their reason for doing this - I was without insurance for 7 months! Does this make sense???

I would suppose there are two ways to look at this - 1. I will die for some reason before January of 2010 and they won't have to pay anything; or 2. Anything that possibly could have been treated during this time will get worse and be more costly in the long run.......Does any of this make sense??? In a discussion with the insurance company yesterday, I told the rep that I knew for a fact that I have a new diagnosis and new necessary treatment and she again stated that even though I thought that was true, the claim would more than likely be denied.

So, here we are - barely making ends meet because of the cost of health care, medications that we can't afford even with prescription insurance, and still waiting for a year and a half - over 18 months for SS Disability Income! The real kicker - I have been denied twice already because I did not have insurance, and therefore was not able to visit the doctor, and therefore must not be sick enough to warrant the disability income and so on and so on with the house that health insurance built!

I cannot give you the full impact of my frustration in this letter - I can only say that the pain this has caused my family is unbearable to me. This is not about me or my illness, as much as it is about what this has done to everything that we have worked for. I have been employed and worked for 34 years of my life and would still be if it were possible. I have paid my taxes and paid more than most due to the fact that I was self-employed for 14 years and now at 52, I am literally begging for help and hoping and praying it won't come too late - after my family has lost their home, their self respect, dignity, and worst of all, faith in doing what is right and believing that we will be protected and taken care of in our time of need.

I don't know what the answer is and I surely don't have the magic bullet....but I know that there is an answer to be found because there are too many in this country hurting and dieing for the same reasons. Some say "let the churches take care of people like that" but unfortunately that just does not work either. If we don't all come together with a solution and forget about partisan issues and games, we will all witness the death of something so much more important......a decent life and the belief that if you work hard you will be ok - somehow, someway.

Again, I apologize for the length of the letter - I am passionate as you can tell and I have been very fortunate and blessed in my life - but now I, like so many others, need help and I am sending out one last distress signal in the hopes that someone will notice us - here hanging on by our nails to the the ever growing crack that will soon consume us.

What Would Your Mother Say...........

Well I know I am showing my age now, but I came so close to shouting at two college students earlier this week and asking them about the origin of their up bringing! I normally don't speak out when I see something I consider rude behavior, but this time, it was all I could do not to explode!

I had a doctor's appointment and after that went to visit my Mother at her apartment building downtown which is in the heart of our local state university - University of South Carolina or USC as we call it. On this particular day there were no parking spots at her building and I was forced to find one near a meter on a nearby street. When I tell you this street is a very steep hill, I am in no way exaggerating. I saw young people bracing themselves to walk down the hill it was so steep. I remember this particular street from my childhood - I was afraid when my parents drove up it because I believed that our car would fall backwards. If you have read my blog previously, then you are aware of how strenuous a trip like this is for me.

Anyway - I found a spot across from her building on this very steep street and pulled into it and carefully made sure that my emergency brake was up and the car was in park before leaving it. I did not have much gas and it did enter my mind that facing downhill like that might cause a problem when starting my 11 year old van but I was too exhausted to do anything else at this point. I had already driven around the block twice and could not find anything better and I knew that my Mother would be starting to get worried.

After a very nice meal with her and visit, I returned to my car exhausted and ready for a nap about 2 hours later. It was still there and had not decided to take wings and fly down this precarious hill and into oncoming traffic. Well - just as I had briefly considered, the car would not start. It has one of those gas tanks with a float and had I parked facing up the hill there would have not been a problem. But.....since I was facing downward, it would not start - even after many tries. I put the car in gear and tried to let it roll down the hill but I quickly realized that with the weight of the vehicle behind it and no power breaks or steering, I would more than likely crash. I literally stood up on the break with both feet and all my weight and was able to stop the car before it hit the little car parked in the space up one from me. In between the two spaces there was a driveway into what appeared to be student housing and of course my van was stuck right in that spot - anyone trying to get in or out of that driveway would have to pull over the curb to get in or out. Not impossible mind you, but a little detour none the less.

Well after all this fun, I was a little unnerved and exhausted. I got out of the car, where there was a cool breeze outside, and called my husband on my cell phone. I knew that I would more than likely get a lecture on why I should not have driven downtown on my own and etc. etc., but there was no other choice. As I expected he was not happy that I parked there but said he was on his way. As I was talking to him I slowly maneuvered my way back down to the bottom of the hill and I planned to wait for him there seated on a brick wall. I knew that I was too tired to make the walk back to my Mother's apartment and I didn't want to worry her.

Just as soon as I ended the call, I turned to see a young man at the top of the hill throwing his arms up in the air and mouthing something. I could not hear him from that distance but it appeared that he was repeating "What the ____?!$?%&" over and over again and motioning to my car. How did he know it was my vehicle - I looked around and I was the only one on the street walking and I was the only older lady with a big grandma purse so I guess he assumed the old van fit. I trudged back up the hill toward him trying to get him to hear me saying "the car is stalled and someone is coming to move it". Nothing - no response - no "Ok - I understand", nothing!! He jumped in his vehicle which was parked in the lot blocked by my van and hurriedly backed over the sidewalk and sped away without another look or so much as a "How do you do".

I was just stunned - I didn't expect him to offer to help or actually DO anything but he could have at least acknowledged that I spoke to him, especially after he completely over reacted to the situation. Oh well - I guessed that he was in a hurry to get somewhere - the life of a busy young college student.

Well I took a seat on a brick wall beside my van and waited, and waited, and then waited some more. My husband was a good 20 minutes away and would have to stop and get some gas to add to the van to get it to start so I knew it would be about a 30 minute wait. At least it was cooler than days past and pleasant outside.

When it was almost time for him to get there, another car rolled up beside mine and the driver rolled his window down and pointed to my car - it was another young man - obviously a student. I immediately jumped to my feet and told him that it was stalled and someone was coming to move it. Again, he rudely looked away obviously irritated and quickly pulled behind me and into the lot - no big deal. He got out and walked away without a word.

I was stunned - what had happened to decency and kindness??? I am mother to 4 young men and I am not bragging in any way when I say that I cannot imagine that any one of them would react in this way. They have stopped in traffic to remove errant lost turtles to the side of the road, gone out of their way to help stranded drivers and put their own safety in jeopardy to help others. I don't take any responsibility or credit for their being this way - we all just assume that it is the way to be. I didn't want these young people to do anything or take any time out of their busy schedules - just don't go out of your way to make me feel awful because you had to take maybe 30 seconds to go around my car. I just wanted to follow that young man to his door and fram on it and ask "What would your Mother say?????"

Whether there is a pretty young girl, an older woman, a child, a old man or whatever else, we are all human and we are all in this together. Showing a little kindness to each other does not cost us anything and we reap the benefits down in our soul and in our hearts. We all need to think before we react and this has surely made me more aware of this.

Long story short, my husband was able to start the car after a perilous ride down the hill with no breaks or steering and we finally got back home over an hour later. It has taken me days - more than a week to recover from this trip - but what is more important is that I realize that I must take my limitations into account when I do anything because unfortunately we cannot always count on the kindness of strangers........but I will be more vigilant about being a kind stranger!

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!!

Just because You Can........

Just because you can, doesn't mean that you SHOULD!

I need to plaster this saying all over my house and maybe even the palm of my hand and my forehead so that others can see it and tell me "Just don't do it!" If you have ME, Fibromyalgia, Arthritis or many of the other auto-immune diseases that are so prevalent, you can surely understand this little statement.

I have a drivers license, I can drive, and sometimes I do, but that does not mean that I should. I try not to unless it is necessary and never when I am very tired or early in the day. But, my son missed his school bus on this day - not his fault - and so I drove him to school. It was a necessary evil but as I was driving back home after dropping him off, I realized the many reasons that I SHOULD not be driving. It is only by the Grace of God and dumb luck that I have not had a major accident.

Most with ME or any other brain altering illness will know what I mean. While driving, I no longer am able to remember familiar routes that I used to drive every day, I become confused as to what button or dial makes the turn signal versus the lights and wipers work. My car is 11 years old so I can't blame it on not knowing. Left or right pose a problem and can be easily confused and the more anxious I become, the worse my driving becomes. My son would tell you that I wait way too long to pull out when making a turn, trying to be sure that no one is coming and I am doing the right thing. This often causes problems when those waiting behind me are no so patient. The Interstate is a very scary thing and I don't feel comfortable traveling there at all anymore. It is all too fast and not within my control.

The same can be said of foods like chocolate, beef, sugar - just because I can eat them - my hand goes to my mouth with a fair amount of ease - it DOES not mean that I should! I won't begin to die immediately if I do but there will be consequences and sometimes we don't even know what they will be. Over doing in any capacity has many consequences - especially for my family - but I do it anyway and suffer later.

My point here is, if we know there are things that we CAN do but just SHOULD NOT do ---- then Just don't do it!!! This little rule does make life a little small bit less unpredictable in a world that seems so out of control and can make each day just a little easier. When that box of brownie mix whispers to me again, just for today, I may tell it to be QUIET because I can't partake - just for today!

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!

Being Disabled Can Be a Blessing!!

Believe it or not, you can turn your disability into a positive thing. It just takes a little time - after you morn the life you won't be having and get over the anger, move on to embrace what you love about your new life. It's not always easy but you can do it!

I was thinking about this earlier today and it brought me back to a time years ago when I was 25, the mother of two little boys, 9 months and 3 and they were the center of my existence!! I had a mole on the right side of my chest that had been getting larger and larger for a few years and I kept putting off checking into it - sort of a bury your head in the sand and it will go away kind of thinking. Then in an instant it became an emergency - I was innocently reading a "Good Housekeeping" magazine and in it there was an article about Melanoma - Uh Oh - there were pictures and alarm bells went off and I was in a state of panic. My Dad had died of lung cancer when I was only 17 and since that time I was always on alert for the allusive symptom that would strike me with a similar diagnosis.

Long story short, a friend of mine convinced me to go to the doctor the very next day and my kind old physician told me he feared it was a malignant melanoma and should remove it right away. So, I let him make a deep wide angled cut into my chest that very day and send it off for diagnosis just knowing that I was going to die. All that I could think of was my sweet little boys and what would happen to them - I was obsessed and unfortunately it would take at least a week to get the results back. That was a week of suffering for me and my family - I drove them nuts to say the least - it wasn't about me but about my babies - they needed me. I called my beloved OB/GYN - he had been my doctor since the age of 16 and I talked to him about what this diagnosis could mean - bad idea for someone like me. He told me about these types of cancer metastasizing, commonly going to the brain - Oh my GOD - my boys just did not deserve this.

Well, after a little over a week of non-stop drama, I found out that the mole was benign! I still remember the tremendous sense of relief and I can honestly say that this event changed my life. Some good ways and some bad but changed it all the same! I was so thankful just to do ordnary things and spend time with my babies!! Each day was a gift.... Now I see my disability the same way - not nearly as traumatic but I look at everything differently now and you can too!

I am thankful for the dirty dishes in my sink because that is something that I can still do for my family. I make my 13 year old's bed for him most days because that is a small thing that I can do for him when there are so many things that I can't do. I LOVE doing laundry even though I mess it up sometimes, it makes my guys happy and they appreciate it. The highlight of my day is fetching the mail - because most days I can!! Making a meal, baking cookies, paying a bill - all things that I can do sometimes are all tremendous triumphs and so greatly appreciated by me.

Each day after my son and husband have fallen asleep, and the house is quiet (I am normally still awake because I don't sleep well and dread going to bed) I think back over the day and if I have been able to do at least a couple of things for them, I am so very thankful and I feel my day was a success. Rather than dwell on the many things I can no longer do, I chose to be thankful for what I have learned to appreciate.

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!

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.