For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: SSDI

Medicare, Blue Cross/Blue Shield, and Me

September 21, 2012 / / 5 Comments



Found this kind of funny since I have a busted up foot and have no health insurance. Well, at least at the beginning of the story…

 

Note: This essay was written Thursday September 20,2012

My best friend, who also is disabled and struggles with her own chronic health issues, recently made a statement to me in reference to how I was feeling about unexpectedly not having health insurance. She said that for people like us, having your health insurance abruptly ripped away from you is like a person suddenly being laid off from their job. Those of us who are disabled or have chronic illnesses may depend on our health insurance every single day just like most people have to depend on having an income from a job every single day. Once that gets taken away from you unexpectedly, how do you feel?

Anxious.

Angry.

Fearful.

There is a long story to why I have lost my health insurance twice since July 2012 and when I have more energy and more answers, I will blog more about my experiences with the Social Security, Medicare and disability systems. Today, I just cannot because the system has me completely exhausted and worn done and I want this entry to focus on the miraculous thing that happened today. A thing that despite all the negative things we have to say about the health care system, the insurance companies, and the government, proves that there are good people out there who care.

The short version is this. I switched from my ex-husband’s health insurance that I was on as part of our divorce agreement to Medicare Part B July 2012 as I found out I was being dropped from his coverage. I had been eligible for Part B for quite a while but chose to stay on his as it had better coverage and was more affordable. I had notified all parties involved about my decision and took all the appropriate steps and was told that if and when I was dropped from my ex’s group coverage, I would be eligible for Medicare Part B through special enrollment which is what I did. Because of my extensive medical care needs and Sjogren’s specialists that are only located in CT (I live in MA), I also signed up for a Blue Cross Blue Shield (BCBS) PPO Medicare plan; known as a Medicare Advantage plan. This became my official insurance for everything. It cost a lot more for premiums, co pays, drugs, labs, etc. but was my best option at the time.

Social Security Adminstration (SSA) made a huge error and dropped my Part B in mid July which in turn dropped me from BCBS. To this day, nobody can explain the error. It was a fiasco. They still owe me large sums of money that they mistakenly took from my monthly SSDI checks. Errors they have admitted to but have yet to set straight. However the health insurance was put back in place after approximately two weeks and life went on.

I contacted Congressman’s John Olver’s office in western Massachusetts to assist me in getting this money back. They began to diligently work on the issue but meanwhile once again, without notice, my Medicare Part B was dropped in September without an adequate explanation except to be told there was a systems error. This of course prompted BCBS to drop me from their plan which is standard procedure, leaving me with no medical coverage at all. I had no notification except from my local CVS pharmacist who called to notify me that one of my refills did not go through because my insurance was denied and then a voice mail from SSA saying “you no longer have Part B, I don’t know why, and don’t know what to do about it.” I was unable to connect with my case worker at SSA however I was able to speak with the congressional aid at Congressman’s Olver’s office who started to follow through on the issue for me.

Meanwhile I was dealing with an exacerbation of my Sjogren’s syndrome which required an increase in medications and more lab work, an orthopedic appointment of a six month old sprained ankle that had gone bad, and an MRI. I started physical therapy for said ankle and then had to stop as I had no insurance and was worried the issue won’t get straightened out as by this point I didn’t understand what the issue was or what was going to happen next.

I have learned to handle stress very well. I have to with an autoimmune illness because stress just makes my symptoms worse. But not having health insurance puts me in sheer panic mode and I had my first panic attack in years. I became afraid to answer the phone or check the mailbox because it was always bad news that just made my situation worse and more frustrating. My days became filled with dealing with emails, phone calls, documenting every single thing said or done, working with health care providers and the pharmacy; the list goes on and on.

After several straight days of dealing with this, yesterday I heard back from the Congressman’s office who told me she got me reinstated in Medicare Part B but being the skeptic I am, I knew I would not feel sure about this until I called BCBS the next day to get reinstated with them because they would check the system and I would know for sure I was all set.

So today I called and sure enough, according to the system, I did not have Part B and could not get my BCBS back. I told the rep how I had to borrow money to pay for my medications yesterday and had to cancel appointments which was concerning since I just found out that my MRI showed a torn tendon in my right ankle. Also I had missed an important eye doctor appointment today. She promised me that she would flag my file and watch the system for my name to come through as maybe I went into the system late yesterday at SSA and might come through tomorrow morning. I knew better though. It wasn’t going to be that simple.

So I hung up and just cried. I asked God why can’t the people in charge just make this right so I can get the care I need and so I can not feel so riddled with anxiety to the point where I feel like I am on the verge of panic? Don’t they realize because of my health issues how vulnerable I am? I have utilized every resource I have. I prayed for the strength to just keep going.

And then the phone rang. I hesitated to pick it up because well, it’s always bad news lately. It was a woman named Judy from BCB. She told me that effective today I will be fully reinstated onto my BCBS plan. I told her that I had just spoken to someone from BCBS who said I wasn’t in the Medicare Part B system yet so that couldn’t be done. This woman said that yes, that is true what the previous woman said and that that same woman had then contacted her and that the priority to them is that I receive the medical care I need. And apparently she was the one that was going to make that happen.

I started to cry, a lot.
Because I had health insurance again.
Because I could get the care that I needed.
Because someone cared enough to go to the edge for me.
I was no longer just a number.
I was a human being.

She said my coverage will be retroactive to July 1st (as it should be) and she will check to make sure that none of my recent claims will be denied. She said she needs twenty-four hours to get my prescription coverage in place but to bring all my scripts, including ones I paid for out of pocket so far, to CVS and they will be covered effective tomorrow. She said to make sure I attend my physical therapy appointment tomorrow and to be assured that I now have medical insurance. She will deal with the rest. She was my angel.

This is what happens when God is listening and when you are fortunate enough to find your way to the compassionate people who work in the health insurance industry. Thank you Judy.

Addendum: I called Blue Cross/Blue Shield again today September 21st to reconfirm that I still have an active policy because well, it just seemed all a little too good to be true. And yes, I still have coverage. So today I am off to get a prescription and another much needed physical therapy session. God is good.

























































Photo Courtesy of Google Images

Sjogren’s and Disability

September 29, 2011 / / 18 Comments
I have been reading a lot of posts of the Sjogren’s Syndrome Foundation Facebook page lately about disability for this disorder. People seem to have a lot of questions and comments not only about the process itself of obtaining disability, but also about the journey which is at best, extremely stressful. Having gone through the arduous process myself, I thought it might be helpful to blog about my experience in the hope that someone may find the information useful or at the very least, know that they are not alone in their struggles and frustration with getting through this system.

My journey with disability began in 2008 when I was put on short term disability through my former employer. After a period of time (I believe it was ninety days), it converted to long term disability which was a benefit I had elected through my employer, thank god. What that meant was that a private disability company, contracted through my employer, paid me sixty percent of my previous year’s gross income. Of course I had to get documentation from my doctors and fill out a million forms.

As time went on, it became apparent that I was not going to be able to return to the workplace anytime soon. My long term disability company (Aetna) required that I apply for Social Security Disability (SSDI). The way it was explained to me was that if I was approved for SSDI, Aetna would subtract the amount that SSDI paid me every month from the amount that Aetna paid me so that I would always be earning that sixty percent. I also would be eligible for Medicare if and when I was approved for SSDI.

I first applied for SSDI in October 2009. It required a lot of forms, phone calls, and patience. From what I have read and heard, most people are denied when they apply for SSDI the first time. This is why I was so shocked when in January 2010, I was approved for SSDI. However, the joke was on me. After being on SSDI for about six weeks, I was notified that I was actually DENIED and that my SSDI claim was accidentally approved. The amount of drama and stress this created in my life cannot really even be put into words. It affected my disability through Aetna and caused financial havoc for a year afterwards. I mention this because the only reason I got through it was due to meticulous record keeping on my part.

I appealed the first denial and was denied a second time. The reasons given had to do with the fact that the doctors reviewing my case through Social Security felt that despite my illness and limitations, I should be able to do some type of sedentary work on a full-time basis. I constantly had to justify my symptoms, my illness, and my limitations. A very demoralizing experience I can tell you.

My third appeal involved an administrative hearing with a judge. I was scared out of my mind. Mostly because I didn’t think that I would be able to handle it if I was denied again. I was fortunate enough to have representation at the hearing by a company called Allsup. They are an organization which assists people in obtaining SSDI. I was even luckier because it was Aetna who provided the service free of charge. They had their own interests in mind by supplying this representation because if I received SSDI, that would be less that they had to pay me. However you have to take your help where you can get it and I knew it would benefit me in the long run.

I went to the administrative hearing and in May 2011, I was finally awarded SSDI. I think the best part for me was that I was just relieved to have the process over with. Despite the fact that both SSDI and Aetna review my case periodically and I still could have problems with either in the long run, at least this part of the process was over.

There are many things I learned along my journey of applying and receiving SSDI and they are as follows:

1. As mentioned earlier, keep meticulous records. To start with, get copies of all your medical records. As someone who saw twenty plus doctors, I realize what a task this can be but it pays to have them as a reference. Knowledge is power! Also make sure to document every single interaction you have with anyone related to your claim, especially the Social Security adjuster. Keep track of any monies that are given to you or taken from you. Trust me, mistakes can and will be made so impeccable documentation is a must!

2. Get a doctor in your corner. This is especially important with autoimmune disorders as many times they are not accurately diagnosed and/or symptoms can vary so greatly. If you have a rheumatologist, they are your best bet as they are most familiar with Sjogren’s Syndrome. Make it clear to them that you are applying for disability and that you would appreciate clear documentation in your record as to why you are disabled. When I was approved for SSDI, the judge sent me a very long and detailed letter about how he came to his decision. He said in the award letter that there were two compelling pieces of evidence in helping him make his decision and one of them was letter that my rheumatologist at the time had written about why he thought I was disabled.

3. Many people are under the misconception that SSDI is given out based solely on your diagnosis. I found as I went through the application process that this is not where their focus is. Honestly, I don’t think they care if you have six months to live. What the folks at SSDI are concerned about is how you function on a day to day basis. Make sure to stress this when you are speaking with the folks at SSDI and on your assessment forms.

4. Know why you are disabled. This seems like common sense but you would be surprised. When I was preparing for my hearing, I spent a lot of time thinking about WHY I couldn’t work and I discussed this with my doctor. I can have days and even weeks where even though I still have symptoms, I can get myself through a day and be productive.  However this is because I usually control my environment and all the factors that lead to a flare-up including climate, diet, schedule, and stress. This does not happen in the workplace. More importantly, I cannot reliably and consistently get myself to a job on a full-time basis due to flare ups of symptoms. There is no employer that I know of that would be OK with being out of work as frequently as I would be. Stress these facts during your hearing. It could make all the difference.

5. Be honest. This is critically important. When you are sitting at a hearing, any decent judge is going to be able to tell if you are exaggerating your symptoms/situation. If you are truly unable to work, tell the judge why. Make sure to not leave out any details. Everything counts. When I received my award letter from the judge and he mentioned those two compelling pieces of evidence that helped him make a decision in my favor, the second piece of evidence was my testimony at the hearing. He said that he found me to be forthright and honest about my situation.

The SSDI process is not easy. It takes time, patience, and diligence. Not everyone who needs disability is granted it and there are people receiving benefits who don’t need it (this is not a judgment, but a fact from my conversations with said people). However like everything else we encounter when faced with such a complicated disease like Sjogren’s, we must fight for what we need in order to survive and yes, even thrive.
Persist!
You can do it.
Photos Courtesy of Google Images

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