Anxious Health Administration
The last two months have been difficult. I've spent far too many hours managing the administrative things related to my health. Multiple things had to be dealt with at the same time. I'll post about our adventures in our next post. In this post, I'll describe some of the difficulties I've recently encountered. They are all related to problems that can arise while full time traveling with health problems, and so of possible interest to other travelers in the same situation. Feel free to skip this entry if this doesn't apply to you or you just aren't interested in the minutiae of full-time traveling with disabilities.
My social security disability benefits were up for renewal and they asked for medical records for the last two years. My private disability insurance also requested documentation of medical care for the past year to determine if they will continue my benefits. There were problems with my medical insurance; I have insurance from both Medicare and Care First Blue Cross Blue Shield. Not all the providers I've seen in the last six months have been billing both providers when I've received services, and I some of my mail from these providers and the insurance companies seems to have gone astray. Consequently, I've gotten notices saying that I have past due balances for medical services provided months ago, and chastising me for not responding to earlier notices.
I also had difficulty with a conflict between my two medical insurance providers, each of which claims it is primary and the other is secondary. I spoke with representatives from each provider; each continued to insist that they were primary. Multiple times I spoke with billing, schedulers, and nurses in Maine and California trying to get my April Remicade infusion set up. Without a resolution to the insurance problem, I could not get my Remicade infusion authorized and scheduled. In one of my phone calls I learned that, despite having two forms of health insurance, I had a several thousand dollar past due balance at the hospital that gave me my last infusion.
I contacted my prior employer for assistance in resolving the insurance problem, since they were the ones who had informed Care First that they must be primary, despite Medicare's insistence of the contrary. They had no answer other than referring me to a service that I pay for as part of my health insurance, one that is supposed to help with billing and other medical access problems. The representative at this group had no ready answer so the company has assigned me an agent who is doing an investigation to get a definitive answer about which insurance provider is primary, and trying to help me resolve the past due medical bills.
In addition to this whole process, since I was due for appointments with my primary care doctor and specialists, and we'd decided not to go back to Maine, I needed to identify new regular providers. I contacted doctors and centers in central New Mexico, where we will stay (with some time in Colorado) for the summer. To make appointments, these doctors all required that I first send them my medical records and get referrals from my previous doctors. This process of getting referrals unfolded at the same time that I was trying to make sure that these previous doctors were sending my records to my long-term disability company.
So far, I was able to set up appointments with a new primary care doctor, a hematologist, and a rheumatologist. I have been working on getting the correct records sent to and reviewed by the new neurologist for over a month now. I still do not have an appointment. I've also been working on setting up my next infusion for over a month. I contacted multiple facilities in New Mexico. None of them will schedule me unless I see their in-house rheumatologist. But none of them have appointments any time soon, even when I explain the circumstances of needing regular infusions. The best I could do was get an appointment with a rheumatologist at the end of July. I spoke with my rheumatologist back in Maine about alternatives to hold me over until that time: medications I could self-administer. He said there was one, but changing to it would be a problem: it would take awhile for its effects to be felt and I would have to wait until it was out of my system before I could go back to Remicade. And when patients go off and then back on a medication like Remicade, the medication is likely to be much less effective than it was previously. So another medication is not a viable option.
I had an appointment set up with a hematologist for early May and we made our travel plans around that date. Then we got a call saying that the doctor could not see me then and would have to push it off for two more weeks. No apology, no explanation. I explained my circumstances: I'd been diagnosed with anti-phospholipid syndrome but hadn't yet been in to see a hematologist about treatment. The receptionist told me I was welcome to look elsewhere for a sooner appointment. I tried, but no such luck, so I'm taking baby aspirin and feeling afraid at every leg cramp or chest pain until the postponed appointment.
The hematologist works out of a center that provides infusions, including for Remicade. I tried to ask if their doctor would be able to authorize an infusion for me if my current rheumatologist sent over my records and requested the infusion; I was wondering whether a hematologist is authorized to prescribe something that a rheumatologist typically prescribes. The receptionist avoided the question and said that this authorization would be for their doctor to decide when I saw him. So I'm in limbo about whether I'll be able to get my next infusion when I'm supposed to. I've explored all the viable options and haven't made any headway.
A high point came when I got notification from Social Security saying that they had decided not to conduct a review at this point and would contact me in the future if they decided a review was necessary. This alone went smoothly. Their notice adds to my uncertainty, though. I have no idea if they will ever require another review, or if a review will be necessary in two years, seven years, etc. That makes me uneasy.
A low point came when I got an e-mail from the company working on my student loan cancellation. My loans were on hold due to disability, and I am in the three-year period where I am required to document ongoing disability before the loans are discharged. The e-mail said that they had not been able to contact me for documentation of ongoing disability, and thus they would be reinstating my loans within the next five days. I never received any notice prior to this.
That same day I faxed and e-mailed documentation. I then looked at the loan status online and saw that the loans were already reinstated a few days earlier. I called and the representative apologized and told me that the date in the e-mail they'd sent was an error; the loans had already been reinstated. I was ready to pull out my hair: did this mean that my three year period would be re-started, or that I'd have to go all the way back to the beginning and reapply? Keep in mind that while this is going on, I'm paying the IRS every month for the taxes that came due two years ago when the student loan company sent me a notice saying that the forgiven student loan debt counted at income for tax purposes (these same loans that were not actually forgiven and had now been reinstated).
Update on this: I looked online this morning and my student loan forgiveness status has been changed to approved. I assume this means that they received and reviewed my documentation and were satisfied that I'm still not working. I did receive an e-mail saying that they had received the documentation and that they'd send me a letter letting me know what happened. I wonder if I'll receive the letter.
Some of these mail issues are my fault and some are not. I changed my address to a mail processing company that is supposed to send me notification of all of my first-class mail. It's working to some extent, because I have received some mail. However, it seems that there's a glitch somewhere because some of my most important mail is not being received.
I still don't know the status of my private disability insurance payments: I know, from the phone calls I've made, that I was approved through the end of this past month. But will I receive a payment this month? This money makes up the bulk of my income: it's what I use to pay the bills. The company is not required to give me any advance notice if they decide to terminate my benefits, and the benefits stop with the last payment received. If they decide against me, I can appeal but I won't be receiving benefits while the appeal unfolds. This kind of insecurity makes for some anxious living.
I can't write anymore about any of this. I can't think about it. I try to bracket it all so that I only let myself think about it for designated periods of time and even then I focus on some specific task and get it done. Today was supposed to be a day to tackle a task--to check if my new neurologist has finally received everything necessary for the referral--but I decided I wasn't up to it. I decided to face updating the blog instead, which was a mistake, because I let myself get draw into thinking about the entirety of the issues and what has taken place since I last wrote here. If I'm not very deliberate about how I handle the administrative tasks of illness, there's too much to manage, there's too much anxiety, too much room for confusion and errors that could have serious consequences. I'll take a deep breath now, directing it all the way to the tips of my toes. I'll focus on creating a warm feeling in the center of my chest, and I'll breathe in kindness toward myself.
Sorry about any editing errors; I can't stand to go back and face what I've written about right now.
My social security disability benefits were up for renewal and they asked for medical records for the last two years. My private disability insurance also requested documentation of medical care for the past year to determine if they will continue my benefits. There were problems with my medical insurance; I have insurance from both Medicare and Care First Blue Cross Blue Shield. Not all the providers I've seen in the last six months have been billing both providers when I've received services, and I some of my mail from these providers and the insurance companies seems to have gone astray. Consequently, I've gotten notices saying that I have past due balances for medical services provided months ago, and chastising me for not responding to earlier notices.
I also had difficulty with a conflict between my two medical insurance providers, each of which claims it is primary and the other is secondary. I spoke with representatives from each provider; each continued to insist that they were primary. Multiple times I spoke with billing, schedulers, and nurses in Maine and California trying to get my April Remicade infusion set up. Without a resolution to the insurance problem, I could not get my Remicade infusion authorized and scheduled. In one of my phone calls I learned that, despite having two forms of health insurance, I had a several thousand dollar past due balance at the hospital that gave me my last infusion.
I contacted my prior employer for assistance in resolving the insurance problem, since they were the ones who had informed Care First that they must be primary, despite Medicare's insistence of the contrary. They had no answer other than referring me to a service that I pay for as part of my health insurance, one that is supposed to help with billing and other medical access problems. The representative at this group had no ready answer so the company has assigned me an agent who is doing an investigation to get a definitive answer about which insurance provider is primary, and trying to help me resolve the past due medical bills.
In addition to this whole process, since I was due for appointments with my primary care doctor and specialists, and we'd decided not to go back to Maine, I needed to identify new regular providers. I contacted doctors and centers in central New Mexico, where we will stay (with some time in Colorado) for the summer. To make appointments, these doctors all required that I first send them my medical records and get referrals from my previous doctors. This process of getting referrals unfolded at the same time that I was trying to make sure that these previous doctors were sending my records to my long-term disability company.
So far, I was able to set up appointments with a new primary care doctor, a hematologist, and a rheumatologist. I have been working on getting the correct records sent to and reviewed by the new neurologist for over a month now. I still do not have an appointment. I've also been working on setting up my next infusion for over a month. I contacted multiple facilities in New Mexico. None of them will schedule me unless I see their in-house rheumatologist. But none of them have appointments any time soon, even when I explain the circumstances of needing regular infusions. The best I could do was get an appointment with a rheumatologist at the end of July. I spoke with my rheumatologist back in Maine about alternatives to hold me over until that time: medications I could self-administer. He said there was one, but changing to it would be a problem: it would take awhile for its effects to be felt and I would have to wait until it was out of my system before I could go back to Remicade. And when patients go off and then back on a medication like Remicade, the medication is likely to be much less effective than it was previously. So another medication is not a viable option.
I had an appointment set up with a hematologist for early May and we made our travel plans around that date. Then we got a call saying that the doctor could not see me then and would have to push it off for two more weeks. No apology, no explanation. I explained my circumstances: I'd been diagnosed with anti-phospholipid syndrome but hadn't yet been in to see a hematologist about treatment. The receptionist told me I was welcome to look elsewhere for a sooner appointment. I tried, but no such luck, so I'm taking baby aspirin and feeling afraid at every leg cramp or chest pain until the postponed appointment.
The hematologist works out of a center that provides infusions, including for Remicade. I tried to ask if their doctor would be able to authorize an infusion for me if my current rheumatologist sent over my records and requested the infusion; I was wondering whether a hematologist is authorized to prescribe something that a rheumatologist typically prescribes. The receptionist avoided the question and said that this authorization would be for their doctor to decide when I saw him. So I'm in limbo about whether I'll be able to get my next infusion when I'm supposed to. I've explored all the viable options and haven't made any headway.
A high point came when I got notification from Social Security saying that they had decided not to conduct a review at this point and would contact me in the future if they decided a review was necessary. This alone went smoothly. Their notice adds to my uncertainty, though. I have no idea if they will ever require another review, or if a review will be necessary in two years, seven years, etc. That makes me uneasy.
A low point came when I got an e-mail from the company working on my student loan cancellation. My loans were on hold due to disability, and I am in the three-year period where I am required to document ongoing disability before the loans are discharged. The e-mail said that they had not been able to contact me for documentation of ongoing disability, and thus they would be reinstating my loans within the next five days. I never received any notice prior to this.
That same day I faxed and e-mailed documentation. I then looked at the loan status online and saw that the loans were already reinstated a few days earlier. I called and the representative apologized and told me that the date in the e-mail they'd sent was an error; the loans had already been reinstated. I was ready to pull out my hair: did this mean that my three year period would be re-started, or that I'd have to go all the way back to the beginning and reapply? Keep in mind that while this is going on, I'm paying the IRS every month for the taxes that came due two years ago when the student loan company sent me a notice saying that the forgiven student loan debt counted at income for tax purposes (these same loans that were not actually forgiven and had now been reinstated).
Update on this: I looked online this morning and my student loan forgiveness status has been changed to approved. I assume this means that they received and reviewed my documentation and were satisfied that I'm still not working. I did receive an e-mail saying that they had received the documentation and that they'd send me a letter letting me know what happened. I wonder if I'll receive the letter.
Some of these mail issues are my fault and some are not. I changed my address to a mail processing company that is supposed to send me notification of all of my first-class mail. It's working to some extent, because I have received some mail. However, it seems that there's a glitch somewhere because some of my most important mail is not being received.
I still don't know the status of my private disability insurance payments: I know, from the phone calls I've made, that I was approved through the end of this past month. But will I receive a payment this month? This money makes up the bulk of my income: it's what I use to pay the bills. The company is not required to give me any advance notice if they decide to terminate my benefits, and the benefits stop with the last payment received. If they decide against me, I can appeal but I won't be receiving benefits while the appeal unfolds. This kind of insecurity makes for some anxious living.
I can't write anymore about any of this. I can't think about it. I try to bracket it all so that I only let myself think about it for designated periods of time and even then I focus on some specific task and get it done. Today was supposed to be a day to tackle a task--to check if my new neurologist has finally received everything necessary for the referral--but I decided I wasn't up to it. I decided to face updating the blog instead, which was a mistake, because I let myself get draw into thinking about the entirety of the issues and what has taken place since I last wrote here. If I'm not very deliberate about how I handle the administrative tasks of illness, there's too much to manage, there's too much anxiety, too much room for confusion and errors that could have serious consequences. I'll take a deep breath now, directing it all the way to the tips of my toes. I'll focus on creating a warm feeling in the center of my chest, and I'll breathe in kindness toward myself.
Sorry about any editing errors; I can't stand to go back and face what I've written about right now.
Comments
Post a Comment