WAFM to DAHM

First I was a work away from home Mom and it was very hard....then I was a SAHM - stay at home mom and mother of 4- then I tried being a WAHM - work at home mom and that was awesome......But now I am a DAHM - Disabled at home Mom and I am doing the best that I can to make that Okay! Recently I have added caregiver and advocate to my 84 year old mother who suffers from Dementia and mental illness. Such is life... I hope you visit here and find a reason to smile and a little Joy!

Friday, September 11, 2009

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.