It Took How Long....

I am asked many times how long it took me and how did I get my disability.  Many times I don't tell the whole story because I am afraid it will discourage others and they may not even try when they really need to be approved.  It is a very long process fraught with many battles, lows and highs and frustration.  But, having said that, I will add that it was worth it and I do think it really helped me to realize that some things are truly worth fighting for.

Here is my story and I tell it in the hopes that it will help others in the decision process and give some the courage to do what they need to do.  I first filed in February of 2007 ---- I was diagnosed in December of 1990 with ME or Chronic Fatigue Syndrome and Fibro in June of 1991.  Before being diagnosed I worked full time with three children and was miserable much of the time.  My symptoms started suddenly in 1983 after a bout of Mono that never really went away.  I would get better and then be sick again.  It actually turned out that I had had a bad case of what they called Glandular Fever at age seven which we now know is also Mono.  So...this bad bug was probably dormant somewhere for a very long time.

Back to my disability story - I was laid off in January of 1991 from my full time job and was unable to get another because of this illness.  After that I made up my mind I would find work that I could do from home so that I could rest and work at intervals that would work for me and besides I was relatively young way back then.

I was able to keep working at home doing contract administrative work and I loved it until Osteoarthritis reared it's ugly head and I began to have debilitating cognitive issues that made it impossible to do my work.  When I first filed in 2007, I quickly became frustrated with the process and gave up and continued to try and work part time and my family helped me try to keep my contracts.  That didn't last and the stress of trying to do even part time work was taking a huge toll.  On April 16th, 2008, I gave up and let go.  I realized that I no longer had the cognitive abilities or energy to work and my husband who is the closest person to me, agreed.  He knew it was time as well.  Even still, I waited until October of that year to file again.  I kept hoping I would find something I could do and believe me over the years I have tried many things.  I just didn't want the stigma of receiving disability and I wanted to be free to do what I wanted to do.

I downloaded the forms and completed them myself and mailed them off and for the first few weeks I thought the process was going to move better this time.  I spent much time on the phone with representatives from our local Disabilities office going over my information and answering questions. They talked with my husband at length for health and behavor1al history and details about my daily chores and even if I cared for pets at home.  I started to believe I would be one of those very fortunate few who just might get approved the first time around.  Looking back I realize that I should never have let myself believe that.  I later found out that it was very rare to be approved in the first round and you almost always have to be terminal or at the very least have cancer.

The day before Thanksgiving that year I called for a follow up and was told that I had been denied and that they had suggested that I go back to what I was doing.  I was truly shocked about how upset I was at this determination.  I knew I would be disappointed but I was so upset that I really had trouble consoling myself.  I later realized that to me it was just another way that I was not being taken seriously, that my illness was not being understood and these nameless, faceless people were making a decision about what they believed I could do without so much as a meeting.

At this point I knew that I needed help.  A friend of mine had told me that, when going through this with her husband, she used an advocate and he was able to help get him approved.  I talked with this gentleman several times and I learned many things from his assistance.  In the end I decided to go with an advocate group, Allsup, mainly because they had  a good ratio of approvals and specialized in illnesses such as mine.  After my initial conversation with a representative she agreed that I met all of the criteria and scheduled me for a phone consultation.

The long process began again and I spent many hours completing new forms and in conversation with representatives and with the individuals at the Disabilities Board.  I was also able to get a disk with the information from my decline which gave us some insight into what my doctor's had reported.  The long story short is that I was declined once again.  This time it didn't sting quite as bad because my advocate had prepared me for this and advised that I would have a much better chance once I got to a hearing and was able to meet the judge in person.

Finally I was on the schedule to be set for a hearing in the Fall of 2009.  I was told it could take as long as 6 months to a year to get a date.  As our situation was getting more dire and I was unable to have any medical care during this time, I asked my advocate if my financial situation would change or make my situation any worse.  Surprisingly she told me that I should submit copies of foreclosure notices on our house and medical bills to be considered as a hardship case.  As soon as I submitted this information my hearing was scheduled for December of that year.  I was a nervous wreck - more than likely this would be my last shot and with my cognitive issues, I was not sure I could be my best advocate.

Over the next weeks and months I became more and more anxious and afraid but was reassured by family and my advocate that I could do this.  I wasn't so sure and I knew that I would be devastated by another denial.  Just a few days before my scheduled hearing, I received a phone call from Allsup stating that the judge wanted more information on my initial filing and subsequent one.  Amazingly after a few exchanged emails and phone calls that morning, I was told that if I was willing to go with the April date as my date of disability, then the judge would approve without a hearing.  What????  I was in shock - I couldn't even comprehend what was happening and of course I agreed and the rest is history.  After years of angst and worry and disappointment, I heard or should I say read, the words You have been approved!   A couple of months later I started receiving my benefits and even more than the financial support, I felt redeemed, believed, and absolved of all of my guilt over this illness.  I was finally getting the affirmation that all of this is real and someone understands and know that no one would ask for this or go to these lengths if they weren't really sick!

Okay - what can I share that might be helpful with the process.  These are a few things I wish I had know or understood from the beginning.  I hope they help in some way as you walk this path as well.

• Don't expect any of this to be quick and easy - somehow it could be but don't allow yourself to expect it to be
• Get help - whether it be an advocate or an attorney - find someone you feel comfortable with and go with them - someone who is educated in your illness and filing for disability 
• Don't give up if you really need this - that is how they weed out those of us who are really in need
• Find a doctor who truly understands your illness and know your full medical history
• Keep yourself knowledgeable about how your illness is treated by Social Security and know yourself and what you can honestly do
• Get a letter from your doctor stating your limitations and why you need disability
• Be painfully honest about every detail of how your illness affects both you and your family
• Do everything you can to make regular doctor's visits - even when it is a strain on your budget - I didn't and it hurt my case in the long run.  They assume you can survive if you are not seeing your doctor(s) and in the end my health suffered as well
• Don't let shame or guilt over being ill bring you down - no one would want this or ask for it!
• Keep your head up and find things to keep you occupied and that give you joy - life does not begin after you are approved - enjoy it in some way each and every day!!

I apologize for the length of this post.  I do tend to go on a bit and if you have made it this far, I sincerely hope you gain something from your time reading this.  Good thoughts and blessings to you!

 

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......

It's All About the Balance.....

As I was about to doze off last night, I thought about the unbelievable balance that is involved in all lives - for all living things really.  Then my mind quickly moved on to the required balance of lives that include a chronic illness.  Many times we think that illnesses like the ones we experience are different because we many not wear the obvious label of being ill.  But...not well we are, and the balance we must find each and every day requires quite the learning curve.

I, like so many, have fleeting feelings on a good day that maybe it's gone - maybe it never existed and I am fine.  Maybe the collective "they" were right and it is all in my head!  Then, like the sun rises, the reminders of my illness creep back in and I am once again reminded that when I push myself out of balance, I will quickly be given small warnings that let me know that more trouble is on the horizon.  I am so very fortunate that I am in a place in my journey that my severe pain is not daily any longer.  If I am very careful and work very hard to balance my life, my symptoms are lessened and I can do a little more than I once could and I have some really good days.  This has been a long process for me and started over 20 years ago.  In the beginning I was miserable much of the time.

So what is the point here - life is a difficult balance for all life forms but if you do have a chronic illness, it is not a choice and it is imperative.  If you have children and or a spouse, a job, etc., the balance becomes even more important and you must save the best of yourself for the most important items on your checklist.  Chose wisely and pick your battles - know your limits and tune into your signals and know when you are abusing your system because as surely as the sun rises and sets each day, your more severe symptoms will return with a vengeance if you push beyond your limits.  This is not always fun - my hubby helps me by reminding me of the small things that I tend to do like staying up too late, not eating right, doing too much, letting things upset me, and over thinking things.  Small things for most but very big things for people like us....know your triggers - make a list if you have to.

Another thing that throws a juggling ball back up to our tightrope is that our triggers change and morph themselves over time so be alert for changes and know your body and mind.  It takes time and being quiet to listen to what your body tells you, but the payoff is so very worth it.  Over time you will have many more good days and learn to lean into this new life and make the very best of it.  It is different but it can be okay too!!