Insurance, Doctors, and Pre-Parkinsons (?!)
One the one hand, I don't think that this entry will be of interest to any one; it's very specific to me and my life and my physical conditions. On the other hand, I know that it has been very helpful for me to read others' accounts of their attempts to cope with chronic illness and the related issues that arise. So, read it if you want, skip it if you don't.
The biggest worries I had about moving here to New Mexico were related to continued access to medical care. Currently, I take four prescription medications and receive another of my medications through an infusion in an Infusion Center. I see a neurologist about twice a year, a rheumatologist every three months, a psychiatrist as little as often (which works out to about once or twice a year), a therapist maybe three times as year, a primary care doctor usually every month or so, and an eye doctor about once a year. That's a lot of medication and visits to doctors. Medical insurance is very important to me, as is continuity of care.
Moving away from my university for the duration of short/long term medical leave complicated things. I would still be employed by the university in D.C. and receiving medical care through their employee policy, yet I'd need to access care out here. My employer offers several plans; the one I was enrolled in when we came out to New Mexico was an HMO. I'd been very pleased with access to providers, lack of wait time for appointments, and the general quality of the care available, though my doctors did always have to rush through their visits to get on to the next patient, which was sometimes frustrating. And it was often easier for them to refer me to another specialist than to listen to me and figure what my problem might be. From this system, I ended up with multiple diagnoses, one from each specialist, and no one to put together the pieces to determine if these separate conditions were in any way related. My primary care doctor was replaced roughly every five months so I couldn't count on having a single doctor who was familiar with my entire medical situation. That's a problem.
As is the case for many employers, they offered medical care through a regional network of preferred providers. In this case, that network was in D.C., Maryland, and Virginia. Luckily, that insurance company had a few other regional networks across the country, and for the first three months in New Mexico, we were able to participate as guests in the Colorado regional network. It did mean a six hour drive (each way) once a month in order to get my infusion and to see a doctor, but that wasn't the end of the world; we got to see the scenery and visit friends in Colorado.
But the HMO only allowed three months of access to care as a guest, and I knew I'd have to change medical insurance plans in order to get my infusions and my other medications, and access doctors. That was very scary. My infusion medication alone costs several thousand dollars each month, and there's no way I could pay for that, never mind the visits to the specialists I would need to see to get the medication authorized.
I was really worried that I wouldn't be able to find an insurance plan that would give me access to in-network care, given that I'm in New Mexico and my employer is in D.C. At first, M. and I looked into adding me to his employer-provided plan but that proved to be very expensive--it would cost us more than four times as much per month than what I was paying, just to pay for the insurance alone. And the co-pays for doctors' visits and medications were also much higher than my existing insurance.
Then I found out that my employer did provide access to a plan that would give me access to a national network of providers. This plan had doctor and medication co-pays similar to what I was already paying, and it cost only twice as much monthly as my current plan. Because my divorce was recently finalized (which counts as a qualifying condition), I was able to change insurance plans prior to open enrollment.
Once I was enrolled in the new plan, I was terrified that I wouldn't be able to get in to see a rheumatologist in time to schedule my monthly infusion. I called around to rheumatologists within a two hour drive of my house and no one could see me for at least two months. Then I realized that my employer also provided a service that helped employees with health insurance related problems, regardless of what health insurance provider the employee used. This proved to be a life saver. Within a week and a half, the service gave me two names of doctors serving patients within my region, in each of the specialities I needed to access, and who had openings within the next several weeks.
I did a little research on the doctors they identified and then called up a rheumatologist--one who was board certified in his speciality, who had received patient awards, and who publishes original research in his field. His center made an appointment for me to come in the next day.
We did have to travel almost an hour and a half from our house but I expected that, given how rural our area is and that I was looking for specialty care. We also had to wait more than an hour for him to finish with other patients...The traveling alone was really physically painful, as was sitting around the office waiting room.
But he proved to be a pretty nice guy and seemed to know his stuff. After reviewing my medical history and examining me, he told me that the medication I had been having infused monthly was newly available in a form that could be self-injected once a week. That would mean no more long monthly drives to infusion centers! Even under the new insurance, I would have had to sit in the car two hours each way to access my infusions once a month. This is a major improvement.
I'm still working through the process of getting the medication formally approved by my insurance company at a local pharmacy. A three month's supply should cost me $90, that's roughly what I was paying for three months of infusions. Major, major relief.
Until I got sick and started to depend so heavily on doctors, tests, and medications, I really had no idea what a stressor access to quality, affordable, reliable medical care could be. The fact that I can access such care, apart from the care itself, is a serious factor in supporting my physical and mental health. It means I can focus on eating well, exercising appropriately, and getting the rest I need in order to have a decent quality of life, while continuing to live with chronic illnesses.
So--major relief. At the same time, I've been really upset by something my rheumatologist said after my examination. He said I have some pre-Parkinson's Disease symptoms. He and my last several doctors have noticed that my hands shake and jerk when at rest, and that while they ask me to do things like touch my finger to my nose or follow their fingers with my eyes, my whole torso starts to jerk and twitch. Up until now, every doctor has said roughly the same thing: "Huh, that doesn't look like Multiple Sclerosis. How odd." This new doctor wanted to make sure I was seeing a neurologist soon and that I would give him that doctor's contact information.
Up until now, I'd been diagnosed a few times with possible Multiple Sclerosis. My neurologists have hesitated to be final about it because when I have what appears to be an exacerbation, there's no new inflammation to be seen in the MRIs of my brain, even though systemic steroids do seem to alleviate my symptoms. I do definitely have demyelinating disease in my brain, but the doctors haven't been sure what kind it is and consequently, if it will progress beyond what it is now.
In my own reading and research about my physical health, I'd noticed that many of my non-arthritic symptoms were those of Parkinson's Disease and other movement disorders. And my grandfather died from a really unpleasant degenerative movement disorder, and my uncle on the same side of the family showed signs of the same disease prior to dying at a youngish age from the effects of alcoholism and cancer.
So, I've been kind of terrified and relieved. I'm relieved that maybe I'll get a diagnosis in the near future, Parkinson's or not, that helps explain to me the disparate and crazy seeming symptoms I've had for the last eight years. And of course I'm terrified that the diagnosis could be Parkinson's or some other degenerative brain disorder.
I had a bad day or two struggling with this possibility. Then I realized that the best thing I could do, regardless of what eventual diagnosis I end up with, is take good care of myself and live my life to the fullest. I feel like I'm doing that, as best I can right now.
There's a bit of a catch-22 here. If I felt better, I could be doing more: traveling, writing, building, growing things, cooking, reading, activism, etc. But if I felt better, I'd be working full time and wouldn't have the time or energy to do any of those things.
So I need to go with what is: given the endurance that I do have and the way that I do feel, I'll be as active as I can. And I'll do things that help keep me as active as I can be, such as exercising, eating well, sleeping, and learning.
The biggest worries I had about moving here to New Mexico were related to continued access to medical care. Currently, I take four prescription medications and receive another of my medications through an infusion in an Infusion Center. I see a neurologist about twice a year, a rheumatologist every three months, a psychiatrist as little as often (which works out to about once or twice a year), a therapist maybe three times as year, a primary care doctor usually every month or so, and an eye doctor about once a year. That's a lot of medication and visits to doctors. Medical insurance is very important to me, as is continuity of care.
Moving away from my university for the duration of short/long term medical leave complicated things. I would still be employed by the university in D.C. and receiving medical care through their employee policy, yet I'd need to access care out here. My employer offers several plans; the one I was enrolled in when we came out to New Mexico was an HMO. I'd been very pleased with access to providers, lack of wait time for appointments, and the general quality of the care available, though my doctors did always have to rush through their visits to get on to the next patient, which was sometimes frustrating. And it was often easier for them to refer me to another specialist than to listen to me and figure what my problem might be. From this system, I ended up with multiple diagnoses, one from each specialist, and no one to put together the pieces to determine if these separate conditions were in any way related. My primary care doctor was replaced roughly every five months so I couldn't count on having a single doctor who was familiar with my entire medical situation. That's a problem.
As is the case for many employers, they offered medical care through a regional network of preferred providers. In this case, that network was in D.C., Maryland, and Virginia. Luckily, that insurance company had a few other regional networks across the country, and for the first three months in New Mexico, we were able to participate as guests in the Colorado regional network. It did mean a six hour drive (each way) once a month in order to get my infusion and to see a doctor, but that wasn't the end of the world; we got to see the scenery and visit friends in Colorado.
But the HMO only allowed three months of access to care as a guest, and I knew I'd have to change medical insurance plans in order to get my infusions and my other medications, and access doctors. That was very scary. My infusion medication alone costs several thousand dollars each month, and there's no way I could pay for that, never mind the visits to the specialists I would need to see to get the medication authorized.
I was really worried that I wouldn't be able to find an insurance plan that would give me access to in-network care, given that I'm in New Mexico and my employer is in D.C. At first, M. and I looked into adding me to his employer-provided plan but that proved to be very expensive--it would cost us more than four times as much per month than what I was paying, just to pay for the insurance alone. And the co-pays for doctors' visits and medications were also much higher than my existing insurance.
Then I found out that my employer did provide access to a plan that would give me access to a national network of providers. This plan had doctor and medication co-pays similar to what I was already paying, and it cost only twice as much monthly as my current plan. Because my divorce was recently finalized (which counts as a qualifying condition), I was able to change insurance plans prior to open enrollment.
Once I was enrolled in the new plan, I was terrified that I wouldn't be able to get in to see a rheumatologist in time to schedule my monthly infusion. I called around to rheumatologists within a two hour drive of my house and no one could see me for at least two months. Then I realized that my employer also provided a service that helped employees with health insurance related problems, regardless of what health insurance provider the employee used. This proved to be a life saver. Within a week and a half, the service gave me two names of doctors serving patients within my region, in each of the specialities I needed to access, and who had openings within the next several weeks.
I did a little research on the doctors they identified and then called up a rheumatologist--one who was board certified in his speciality, who had received patient awards, and who publishes original research in his field. His center made an appointment for me to come in the next day.
We did have to travel almost an hour and a half from our house but I expected that, given how rural our area is and that I was looking for specialty care. We also had to wait more than an hour for him to finish with other patients...The traveling alone was really physically painful, as was sitting around the office waiting room.
But he proved to be a pretty nice guy and seemed to know his stuff. After reviewing my medical history and examining me, he told me that the medication I had been having infused monthly was newly available in a form that could be self-injected once a week. That would mean no more long monthly drives to infusion centers! Even under the new insurance, I would have had to sit in the car two hours each way to access my infusions once a month. This is a major improvement.
I'm still working through the process of getting the medication formally approved by my insurance company at a local pharmacy. A three month's supply should cost me $90, that's roughly what I was paying for three months of infusions. Major, major relief.
So--major relief. At the same time, I've been really upset by something my rheumatologist said after my examination. He said I have some pre-Parkinson's Disease symptoms. He and my last several doctors have noticed that my hands shake and jerk when at rest, and that while they ask me to do things like touch my finger to my nose or follow their fingers with my eyes, my whole torso starts to jerk and twitch. Up until now, every doctor has said roughly the same thing: "Huh, that doesn't look like Multiple Sclerosis. How odd." This new doctor wanted to make sure I was seeing a neurologist soon and that I would give him that doctor's contact information.
Up until now, I'd been diagnosed a few times with possible Multiple Sclerosis. My neurologists have hesitated to be final about it because when I have what appears to be an exacerbation, there's no new inflammation to be seen in the MRIs of my brain, even though systemic steroids do seem to alleviate my symptoms. I do definitely have demyelinating disease in my brain, but the doctors haven't been sure what kind it is and consequently, if it will progress beyond what it is now.
In my own reading and research about my physical health, I'd noticed that many of my non-arthritic symptoms were those of Parkinson's Disease and other movement disorders. And my grandfather died from a really unpleasant degenerative movement disorder, and my uncle on the same side of the family showed signs of the same disease prior to dying at a youngish age from the effects of alcoholism and cancer.
So, I've been kind of terrified and relieved. I'm relieved that maybe I'll get a diagnosis in the near future, Parkinson's or not, that helps explain to me the disparate and crazy seeming symptoms I've had for the last eight years. And of course I'm terrified that the diagnosis could be Parkinson's or some other degenerative brain disorder.
I had a bad day or two struggling with this possibility. Then I realized that the best thing I could do, regardless of what eventual diagnosis I end up with, is take good care of myself and live my life to the fullest. I feel like I'm doing that, as best I can right now.
There's a bit of a catch-22 here. If I felt better, I could be doing more: traveling, writing, building, growing things, cooking, reading, activism, etc. But if I felt better, I'd be working full time and wouldn't have the time or energy to do any of those things.
So I need to go with what is: given the endurance that I do have and the way that I do feel, I'll be as active as I can. And I'll do things that help keep me as active as I can be, such as exercising, eating well, sleeping, and learning.
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