A Reader Speaks up! A Cry for Fairness.

This piece was sent to me by email.  To protect the reader's identity, I've changed certain details in the hope that even a best friend would not know who the writer was.  I'm deeply saddened by the content of the email and suggest that we all will be a little better if we condsider what our lives would be like if we had to endure even a fraction of this writer's daily routine.  To the writer, if I've lost the thread of your writing the fault is mine alone.  Thank you for allowing me to share it.  I ask the readers to allow your imagination to  to fill-in certain necessary blanks.  God bless you, Colin.  Any note you have to "Sarah", I'll forward.

     My name is Sarah and I am not a writer,except late at night when I'm upset.  So please excuse any mistakes I might make. 

  I really like all of the words of the writers and pictures of the photographs.  Your blog site was the only one I have found where I read the honest truth of the ups and downs of a life filled with Chronic Pain.  Too many are have a false sense of over the top cheeriness.  There is a big difference between inspiring and insipid.  So thank you very much, you have touched my life and made me think and feel like I am not alone anymore.

     Now, I know that there are people out there who express how I feel.

     I am reading all the archives trying to find if there are any that tie,  with sories like mine that bedin at the end work back to the to begining.  Stories that start with people who now find themselves disabled and go backwards describing how the lives of these people might have already been hard before sickness.

     I am specially interested in folks who use Medicaid as their health insurance.  I'm sure there are thousands of us, and more to come with the baby boomers rapidly becoming older.  Being on Medicaid was not such a big deal until I became truly disabled. 

     Although many of us tried very hard to avoid being on Medicaid.  It's now that I find such a flawed system.  You fill out a lot of papers to file for disability.  Then you are told if you have enough points, work history, to qualify for Medicare instead of Medicaid. 

     I did not qualify for Medicare, since being a full-time mom doesn't count as "work".  But, even if you do qualify, being disabled and/or having large medical bills, means a lot of the time wasted on trying to proove you're disabled. 

     It's not a pretty picture being stuck in the middle.  You might end up selling your home, then if that's not enough, going through  everything like savings, stocks, furniture, cars, etc.,and then ending up on Medicaid anyway, because you have run out of money.  That happened to my Grandmother...then me.

     It is hard enough being disabled.  On Medicaid though, I might as well put a big neon sign on my forehead that lights up every time I walk into a new doctor's office that flashes "bad financial risk".  Going to the hospital, and especially the emergency room, is just plum awful.  I sit waiting to get medical help and I hear ,"you need to sign this form for MEDICAID", nice and loud for everyone to hear, or, " your medical provider is MEDICAID?"  Then everyone looks at me and I'm labeled.  I mean do you ever hear "you need to sign this form for Blue Cross and Blue Shield?"  Nope! Instead, you hear "your insurance form needs you to be signed."  But if you're on Medicaid, it's like a loudspeaker shouted-out for everyone to hear.

     The the emergency room is the worst.  First you end up waiting longer. Then the real embarrasment starts.  Second, it seems like every nurse and docor thinks every person on Medicaid is just there to try to get drugs.  So, they think you are faking the pain.  Last, all Medicaid patients are treated like lazy bums who should just get a job...and, of course, we all live in trailers, are druggies, didn't graduate from high school, have children to get free money, and we're the frauds that cause everyone elses insurance cost to go up.

     I wish a government official, as part of their spin, would say, "I am for Medicaid insurance, caring for everyone who cannot afford to care for themselves through no fault of their own:  the poor, the disabled, the mentally ill, the homeless.  We're not bums, fakes and drug addicts.  The few that are wreck it for everyone.

     I believe we should care for those twenty something mothers of two, newly divorced working two fulltime jobs and still can't get by.  And those women are the statistical facts in in every state in the counrty.  Try to survive on welfare.  Add this to your pain and you have me.

     Oh, and the average time on welfare is two years.  Is it okay to spend $30,000 on just one rapist in prison versus $500 spent on three people, two who are kids?  Is this fair?  Most of us work hard.  We work the two jobs.  And we're lumped in with the frauds and crooks and anyone else who abuses the system.

     We have no lobbyist like corporations do.  And speaking of corporations, tell me what is the fraud average there?  Enron isn't the only one.  Or tell me about the health insurance,and all the other little perks you get in government service. The amount of money spent on special interests or corporation welfare could make a huge difference in the lives of those who had to sell their homes to pay medical bills, or who are disabled and who don't always get quality health care

     One of the diseases I have is CVID (common variable immunodifiency) a disease similar to the "bubble boy",impaired immune system.  I get an I.V. of 20 grams of gamma goblin.I have needle marks all over the tops on my hands and lower arms.  A nurse in ER was horribly rude , bodily jerked me around while he tried to put in an IV on me. 

     Finally I said, "stop why are you so upset at me?" 

     He replied with righteous vengence on his side".  "Look," he said jerking my arm around, "you are a druggie." 

     At first I was shocked and didn't understand till he shoved my hand at me.  I said,  "A druggie would not put needle marks there, they hide them.  I come here to this hospital biweekly to get IV's."

     He kind of setled down, but the IV he gave me blew out four veins before he got the needle in.  Many doctors are even worse.

     I live on $623.00 a month.  That is for everything.  I was diagnosed with a rare orphan disease at 32 years old.  A year an half later my husband left me for a stripper.  I found out after bell choir at the Methodist church.  I lost my car, all my money, savings, my home. 

     Then I applied to finish my college degree the office of SSI said no.  I appealed, and this time, the "no" had an explanated, "...not cost effective due to health".  I asked what that meant and it seems someone decided I would not live long enough for them to get any tax money back out of me.

       I am labeled and now I have another, in addition to DIVORCED, MOTHER, POOR, MEDICAID, WELFARE, DRUG ADDICT, add , NOT COST EFFECTIVE ENOUGH FOR FURTHER EDUCATION.                           

      I just had a CT scan of my neck and spine.  I hurt so bad I would scream but that would probably make it worse or wake the neighbors.  A week ago I had a bone scan for osteoporsis.  I had 70% bone loss in one hip and 30 in the other.   I've becone 1/12 " shorter. Compression fractors.

      My life is like one big comression factor.  Thanks for listening.

                                                   

Comments

[Anne McGill]

Colin,

Thanks for sharing this. We have to help this woman. Can she share some info like the state she is in? Maybe somone knows somone in the government in that state who can pull some strings for her.

She makes me feel like a big wuss.

Anne

[Denise Kellams]

Colin,
I am Diane Hort's sister (Sarah in your article). She died 8/25/07. I wanted you to know, as she was very touched to 1) Have her story published on the web 2) Receive comments. I am witness to her medical challenges as well as the financial and emotional burdens that accompanied her illness(es). I felt that since she was so touched by your support, that my note to you would let you know that your kindness and website were blessings to her. Thank you for your prayers and warm thoughts of her. She will be missed dearly and we are only glad that she is no longer in constant pain. One thing that she strived to achieve in her last few years was her spiritual growth and companions via internet. She was house-bound in these last few months; so your correspondence was immensely appreciated. You can locate her 'In Memory' by searching for any of the following newspapers on-line (all newspapers are in Kansas); The Colby Press, The Oakley newspaper, McPherson Sentinel, Garden City, Kansas newspaper. You will also find my name as surviving sister to confirm both Diane and me. Again, best wishes to you and your team and the help you will give to others. Diane would love to know that you were able to help others who are in the situation that she was in. Thank you, Denise Kellams

[zed null]

anne, colin, denise, and others...

i worked for nearly twenty years, as an "admitting clerk/intake worker" at a major private hospital on the west coast...

both in the "main section of the hospital, and their emergency room/trauma center...

(until i "became unable to do so", due to a "worker's comp/lifting injury" where i "blew out my lower and upper back (L4-L5, and C1-C2), and now suffer with chronic pain as a result of bone spurs adding to my disability!!!"

i "know well" the examples of "indignities heaped upon those with medicaid (medi-cal in california) by insensitive and uncaring doctors, nurses, and others that you speak of; having witnessed some to that behavior among my co-workers and the medical staff that i worked for/interacted with on a daily basis... and "received myself" once i "became one of the WALKING WOUNDED" instead of "one of the CAREGIVERS"...

while "still able to work" i tried to "treat each person; patient, family member, or significant other" as a VIP... regardless of "insurance or ability to pay"... that "little bit extra" caused me to be voted Employee Of The Quarter on more than one occasion, and have money donated to the hospital i worked for in my name... until, those who "supervised me" eliminated that recognition program; because "i kept consistently getting re-nominated", much to the "shame and embarrassment" of my co-workers, who were never even "in the running"!!!

it's really a shame... that "people who CALL THEMSELVES part of the HELPING PROFESSION; as doctors, nurses, i v technicians, phlebotomists, and others... "become so judgmental" based on a persons health coverage, without realizing; that "there but for the grace of the almighty", they "might find themselves" in a "similar predicament"!!!

perhaps, after the 2008 elections, if the NEWLY ELECTED PRESIDENT is SERIOUS about THEIR FOCUS on HEALTH CARE REFORM and ENDING POVERTY and MEDICAL IMPOVERISHMENT... "those types of examples" might "become a thing of the past"!!!

my thoughts and good wishes go out to all who read this!!!

namaste,

zed null