Today, I had hoped to spend the day making a few 'business calls' and move 'onward' with my blogging about my latest week of visitors. Instead, I've started off another week, another Monday consumed emotionally and physically by the 'Ambien saga'.
So, as Carrie would say, today "I've got bigger fish to fry" and as my friend, Jessica said about the whole Ambien hearing, "I'm so angry I could spit!" She's right on.
Aaah, yes, and one of the things I am supposed to do with these illnesses is avoid stress? Oy vey!
At this point, especially after today's interactions with an MA nurse case worker, I plan to send my blogs on this topic to my representative. He must be made aware of the injustices happening to MA recipients around the state. As I look back at the entry I wrote today, I realize that it IS, in fact, the letter to send to my state representative. As I wrote, I realized that I was writing to him, more than perhaps to my 'readers and subscribers' (your opportunity to skip out on reading the following novel!)
What I learned from my friends after my first post on Ambien is that I have kept quiet about the battles I fight every day, year after year: the miserable battle for SSI, fighting for my other standard medications each year, last year's Ambien hearing, etc. Through my DINET friends, I know that they are fighting similar battles every day also.
Today's scenario:
As I mentioned in my previous entry on Ambien, at the end of the hearing the doctor (off-record) offered me a nurse case worker to 'help me understand' things. Apparently, when a person becomes disabled they also become stupid. Over the past nine years, I have been 'taught' that I am stupid countless times by those individuals whom we as a society most expect to treat others with respect (such as doctors, case workers, etc.).
Today I spoke with the nurse case worker assigned to me. Although she is very nice, and has reminded me 'not to shoot the messenger', she is of little or no help in the end.
The doctor (I'll call him Dr. T) also promised me, when pushed by the ALJ, that after the hearing I would have in my hands a copy of the 11 points of sleep hygiene. I have NOT received this and the nurse case worker had not received any information about this.
Toni, my nurse case worker, has IN HER HANDS, a copy of the denial by the ALJ dated July 16Th--the date of my hearing. I HAVE NOT received the a copy of the denial.
According to Toni, the denial states that I must have an evaluation of sleep hygiene by an ABSM certified doctor. The closest place she can find on the website given by Dr. T (www.sleepstudies.org) to have this done is 1 1/2 hours away.
Let me also mention that this nurse, whose job is to 'help me' and after I 'follow through' on my sleep hygiene study present my case to Dr. T, DID NOT know what an evaluation of sleep hygiene was OR what an ABSM certified doctor was.
I can find all of this information online, call the nearest sleep hygiene center, as well as call around town AGAIN to see if any of the doctors in town are ABSM certified (a NEW stipulation that had not been given to me previously). I am assuming ABSM stands for American Board of Sleep Medicine.
And, as discussed before, sleep hygiene refers to common sense questions such as: Do you eat in bed? Do you drink caffeine before bed? Do you drink alcohol? Do you have a good bed? Do you have a darkened room? Do you have noise control? Do you exercise (but not more than four hours before bed)? Do you avoid watching TV one hour before bed? Do you listen to quiet music or engage in another quiet activity before bed? Can you tell I've been over these a few times in the past nine years with various doctors? No psychiatrist would have prescribed Ambien to me in the first place without first assuring that I was practicing good sleep hygiene to the best of my ability. Filtered through the MA lens, these cut and dried questions do not take into account a person, such as myself, who is sometimes too sick to get out of bed to eat, or too sick to exercise, etc.
Today, I was the one who explained all of the above to Toni. I was left with the responsibility to find out what exactly a sleep hygiene study is and if a doctor locally can do this. I also encountered resistance when I asked her to contact the doctor and request the list of sleep hygiene points that he promised me (and, during the hearing, had admitted under duress that I met 7/11 criteria in the letter he had not read before the hearing).
Now, I have VERY limited energy. Taking the time to do all of this research and make these phone calls will take several days of my time. If, as I have mentioned before, I was poor and uneducated, I would not even have a computer or be able to research these things. So, how much is this nurse case worker really doing for me? Or someone without such resources?
If I must travel 1 1/2 hours away and the sleep hygiene study requires an overnight, my parents must pay for travel and overnight stay in a hotel room. Why not just keep paying for the Ambien as we already are doing? Why put my body through this when the price I will pay for travel and perhaps several days off of Ambien will be horrific?
It seems today I was the one 'helping' the nurse to understand what Dr. T specified in the denial, rather than the other way around.
At the end of my conversation with Toni, I flat out asked her if putting myself through all of these hoops would even result in me receiving Ambien. She could not answer and had no idea.
I also want to address here all of the responses I received to my first entry on Ambien, in particular the question of whether or not I could get a lawyer to help me win my case.
Last year I also had a hearing that went quite similarly to this past one. It consisted of the same ALJ judge, a different doctor, and ultimately the same outcome, however with different 'specifics' in the denial.
In order to begin receiving SSI and MA, I hired a lawyer who specializes in disability. The only work he does is SSI and SSDI cases. I travelled out of town to find him, as no local lawyers handle disability cases. Why? Because there is no money to be made. My lawyer, Charlie, spent endless hours working on my case to win SSI, yet he is entitled to only a small percentage of my retro-pay and current pay, an amount totaling about $250! When I was up for renewal this year, he again handled my case at NO CHARGE.
When I needed a lawyer last year for my Ambien hearing, Charlie volunteered again to help me at NO CHARGE. However, what is VERY IMPORTANT TO NOTE HERE is that the laws MA has created to get medications are brand new as of 2006. Charlie admitted that he was not up to date on all of the new laws, but still offered to take my case. We hoped that just having a lawyer 'on board' for the hearing would help us win. It did not.
This year, I handled the case on my own.
The only other options for legal services in this town are through a group that helps individuals with such cases as MA hearings, SSI, etc. HOWEVER, they are so overwhelmed it is impossible to get a lawyer to represent you. They are especially overwhelmed now that MA has added a hearing process that, in fact, probably does require clients to have a lawyer for every medication they are denied.
So, that is the answer to the question of finding a lawyer to handle my case. In the end, the questions we must really ask are: How much money is MA using to pay ALJs, doctors, nurse case managers, etc. to handle these drug appeals? Is it in any way cost effective? It seems with all of the money spent on staffing and handling these hearings MA could have, quite simply, paid for the drug I need and my doctors requested.
As I mentioned in my previous post on this topic I have spent the past year and half trying to find out what MA defined as 'a formal evaluation of sleep hygiene' without success. Today, I again encountered a nurse case worker who is supposedly on my side who did NOT know what this was.
Over the past two years, I have also spoken several times with a pharmacist in the Division of Pharmacy. After the first hearing, he suggested that my ANS specialist call him and write to him directly. My specialist did both--faxed a letter AND spoke to the pharmacist on the phone. I was still denied. The pharmacist assured me he would talk to the medical director and ask what more information was needed from my specialist.
Again, a denial.
During the July 16Th, 2007 hearing I was told that my specialist's information was NOT relevant and could not be used in my case because I had not seen him within the past year, despite the fact the he and I email and talk on the phone frequently. I have not travelled to see him because of the distance and the toll it will take on my physical well-being and this has been HIS decision. (Please note also that MA does not pay for me to see any of my out of state specialists.)
So, in other words, my doctor who has more on his plate than he has time to do, jumped through a bunch of hoops, made phone calls, wrote letters, and in the end was never told (and neither was I) that he was literally wasting his time because I had not seen him in person within the past year.
However, the law serves MA when and how they want it to. My ANS specialist wrote a letter requesting all of my maintenance medications not covered by MA. They approved all of them EXCEPT Ambien CR two years in a row.
What a waste of our doctors' precious time and energy. What a waste to dispose of their expertise in favor of a doctor who does not know my case. And most of all, what a waste of time that could be spent on what our doctors are meant to be doing: patient care.
Why am I so angry? Why do I break into tears just discussing this? Why can't I have a better supply of duck oil and just let this all roll off my back?
Because my parents and Davidson and The Friends School taught me to care. They taught me to care about others. They taught me that justice matters. They taught me to be an active citizen of our nation. They taught me to fight for those less fortunate than myself. Nobody should be treated without dignity and respect. Period.
I want to shrug my shoulders and say, "Well I guess my parents can pay for it." But I can't. And, it's just one more pile of financial guilt to carry, one more thing they pay for because I can't. No one on SSI with a chronic illness can live on their own: $650 a month and $31 in food stamps. Sadly, I'm making more money and am better insured than those living at what we consider poverty level in the United States. Aahh, but that's another topic for another day.
Toni suggested I seek out a drug assistance program. Well, since I can't physically take care of myself OR financially afford to live on my own, I live with my mom. This means that I am ineligible for such services because they are based on 'household income'. Again, I am left to be my parents burden. And given no power to become self-sufficient. If, God forbid, I am still sick when my parents die, they cannot even leave me their money without risking me losing health care coverage. And what insurance company would take me? Frankly, it's terrifying, and more than can be discussed in what I am supposed to be keeping to a post on Ambien.
Quite frankly, what this all boils down to is that I feel that I have been lied to, treated unfairly, and set up to fail.
I have a nurse case worker who doesn't know what the stipulations mean and she WORKS for MA. I have been told varying conditions by different people throughout MA (i.e. the pharmacist in the Division of Pharmacy vs. the doctors at the hearings). I have been promised (and flat out lied to) that I would receive written documentation of an evaluation of sleep hygiene. I have not even received the denial notice myself.
With each denial and each hearing MA ups the ante.
They keep changing the conditions I have to meet to receive this medication.
They keep adding more hurdles and hoops for me to go over and through.
The goal line keeps moving farther away...
I am so weary.
But, in the end, I know I will keep fighting because it's part of who I am.
I've been taught to fight the good fight.
And I will.
Disability does not discriminate.
I did not ask to be sick. I did not ask to be treated this way.
I speak for myself, and I believe for my DINET friends who are also very sick: we would give anything to be healthy, to be working, to be out in this world, to wake up and know what it feels like to not be sick and in pain.
If we can't have this, I ask that we at least be treated fairly, justly, and with respect.
I ask that Melissa, who fights every day just to LIVE, be granted SSDI or that Steph be granted Zofran for her Cyclic Vomiting Syndrome (CVS) so she doesn't waste away completely and end up on a feeding tube because Medicaid will not give her Zofran.
Is this too much to ask?
As a person who is chronically ill, I already fight simply to 'get through' each day--to get dressed, to put on my compression hose, to take a bath, to eat my meals. In between, if I'm lucky enough to have a 'good day', I'd like to spend my energy on something other than fighting for my basic medical needs. When I am at my sickest, I'm hoping and praying just to survive the day both emotionally and physically. I'm not able to be fighting for basic medical needs.
My focus, and that of every chronically ill person, needs to be on healing (or in the absence of healing, being given the best quality of life possible) and doing the best to create a life from what we have been given. Instead, most of us spend countless hours of our precious emotional and physical energy fighting insurance companies, doctors offices, lawyers, etc.
A DINET friend (I will be vague to protect her privacy) recently shared a success story with me about how she had kept fighting an unfair and unjust medical situation. In the end, she won. The agency was heavily fined and is now being carefully monitored for further violations. She fought for the same reasons that I am fighting. Thank you, my friend, for fighting and making a difference.
So, as you can see this, for me, is much, much bigger than a little blue pill...
Wishing you all, especially my DINET friends, a day when no one goes without services and medications they need,
Emily
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