To deal with any government office, the phone doesn't help you. You have to go there. "Going there," wherever it is, is a lot harder than it used to be. This seems especially bitter when you wouldn't need to go there if you weren't disabled.
I went to the Chinatown Medicaid office on Chrystie Street. By obsessing over Hopstop, plus google & yahoo & mta maps I was unable to determine exactly how many blocks it was. Did I ever worry about such things before? No. I never even had the patience to wait for buses before. I just walked. Fast.
That was another life.
M14 from 6th Street to Essex & Grand. Grand Street to Chrystie Street. Chrystie Street to #115.
The sun was very bright, but not terribly hot. As I was leaving the bus stop on Essex & Grand one of my shoe buckles came loose. With the help of my cane I limped back to the stop so I could lean against the shelter to fix it, awkwardly fumbling the strap into the buckle. Onward.
Step by step, I got there. Getting there, wherever it is, takes such effort that by the time you get there you either forget why you went or the reason, no matter how important, seems beside the point in comparison.
The gentleman at the front desk said my application was denied on June 1 because my husband's income, $400 a week for a family of three, is too high. I told him I was never notified of this decision. He gave me a printout of the instructions on how to request a fair hearing, highlighting the phone number. "Can you tell from this system that the reason I'm not working is I'm disabled? I have multiple sclerosis and have high medical bills?" He gave me a ticket to wait my turn to see someone else.
I waited probably over an hour, but all they could tell me was go back to the place where I applied (12 W. 14th St. At least it's easy to get to.)
Now I realize the instructions on how to request a fair hearing are not the same as the notification you get in the mail, which has some number pertaining to your case which you use when requesting the hearing.
The highlighted phone number is always busy.
I think the most important thing is to get them to send me that notification. I'd like to ask the advice of my former employer, who is an attorney who deals with NY Medicaid all the time.
The trip was exhausting, with very little to show for it.
Sunday, June 19, 2011
Tuesday, June 14, 2011
Monday, June 13, 2011
preparing for 1st Tysabri infusion today
Practicing with iPod has moved up on my list of things to do.
I have never been able to get any kind of headphones to fit properly or provide decent sound. It's not loud enough. I adjusted the volume using the wheel, I adjusted the headphones so that they're snugger, yet it just doesn't do it for me. I suppose my head's too small. Somehow nothing seems to compare to listening to vinyl records on the stereo we got from Blue Chip Stamps when I was eleven...
I have never been able to get any kind of headphones to fit properly or provide decent sound. It's not loud enough. I adjusted the volume using the wheel, I adjusted the headphones so that they're snugger, yet it just doesn't do it for me. I suppose my head's too small. Somehow nothing seems to compare to listening to vinyl records on the stereo we got from Blue Chip Stamps when I was eleven...
Wednesday, June 8, 2011
Beth Israel Neurology
The next step was dealing with the results of the referral.
It did not work out well.
Probably there isn't a problem with Beth Israel neurology in general.
The problem may only have affected uninsured patients referred by community health centers.
To the doctors' credit, the first thing they asked me was "Are you sure you want to be treated here? Do you want a referral to an MS Comprehensive Care Center?"
The reason I said "here" was because I knew how I could pay for it. I had a 60% discount from the financial assistance ofc and a job.
The doctor in charge of my case was a resident. This meant he was completely unreachable between appointments, which were 2 or 3 months apart. I could not reach the attending physician either. So I got no feedback at all about new symptoms or any other issues.
The bright spot was radiology. The radiology department was on the third floor of 10 Union Square East, also known as the Louis Armstrong wing. A wonderful picture of Satchmo when he was young and cute was prominently displayed by the elevator. I visited it twice every time I was there, which was twice for MRI's, and twice more for medical records, so I could go somewhere else. Even the medical records dept. of radiology was nicer than that of neurology.
I had a total of 2 neurology visits to Beth Israel. One in September 2010, the 2nd in December. The resident/attending pair from the first visit was apparently not available for the 2nd, so that time I saw a different duo.
In September they ordered a lumbar MRI. In December I found out it showed no lesions. In December they ordered a new brain MRI, which I had on January 5.
My next appointment was to be in February. I prepared to demand a contact person I could reach between visits. The stand I anticipated making was not to be. When my husband & I arrived, slides from my first brain MRI in tow so they could compare them with the new one, we were told my appointment had been cancelled.
That's when I resolved to switch where I was getting treatment. Enter the
NYU Comprehensive Multiple Sclerosis Care Center,Dr. Jonathan Howard, and the next chapter in my multiply scleroded life.
It did not work out well.
Probably there isn't a problem with Beth Israel neurology in general.
The problem may only have affected uninsured patients referred by community health centers.
To the doctors' credit, the first thing they asked me was "Are you sure you want to be treated here? Do you want a referral to an MS Comprehensive Care Center?"
The reason I said "here" was because I knew how I could pay for it. I had a 60% discount from the financial assistance ofc and a job.
The doctor in charge of my case was a resident. This meant he was completely unreachable between appointments, which were 2 or 3 months apart. I could not reach the attending physician either. So I got no feedback at all about new symptoms or any other issues.
The bright spot was radiology. The radiology department was on the third floor of 10 Union Square East, also known as the Louis Armstrong wing. A wonderful picture of Satchmo when he was young and cute was prominently displayed by the elevator. I visited it twice every time I was there, which was twice for MRI's, and twice more for medical records, so I could go somewhere else. Even the medical records dept. of radiology was nicer than that of neurology.
I had a total of 2 neurology visits to Beth Israel. One in September 2010, the 2nd in December. The resident/attending pair from the first visit was apparently not available for the 2nd, so that time I saw a different duo.
In September they ordered a lumbar MRI. In December I found out it showed no lesions. In December they ordered a new brain MRI, which I had on January 5.
My next appointment was to be in February. I prepared to demand a contact person I could reach between visits. The stand I anticipated making was not to be. When my husband & I arrived, slides from my first brain MRI in tow so they could compare them with the new one, we were told my appointment had been cancelled.
That's when I resolved to switch where I was getting treatment. Enter the
NYU Comprehensive Multiple Sclerosis Care Center,Dr. Jonathan Howard, and the next chapter in my multiply scleroded life.
an end in sight?
After the audiologist said I should see a neurologist, the next step was a referral to Beth Israel neurology. It took a long time to get the referral.
While I was waiting, my employer suggested I see his good friend the neurologist.
After I saw him he thought I should have an MRI right away. Then he wanted to see me in his office. When they do that, you think you're dying.
The good news was, I didn't have cancer or a brain tumor. I was so relieved to hear that, I forgot that there might be bad news.
The bad news was, my mri results looked like ms.
When I'd added the bowel & bladder problems to a webmd search for the balance problem, the results said something about ms. At that point I thought "that can't be right" and stopped reading.
But Dr. GoodFriendThe Neurologist turned out to be right. The quest to find out what the heck was wrong with me was over.
And he was much nicer than Dr. House.
While I was waiting, my employer suggested I see his good friend the neurologist.
After I saw him he thought I should have an MRI right away. Then he wanted to see me in his office. When they do that, you think you're dying.
The good news was, I didn't have cancer or a brain tumor. I was so relieved to hear that, I forgot that there might be bad news.
The bad news was, my mri results looked like ms.
When I'd added the bowel & bladder problems to a webmd search for the balance problem, the results said something about ms. At that point I thought "that can't be right" and stopped reading.
But Dr. GoodFriendThe Neurologist turned out to be right. The quest to find out what the heck was wrong with me was over.
And he was much nicer than Dr. House.
Sunday, June 5, 2011
a pause that depresses
I've come to the point in the narrative where I'm close to finding an answer.
Meanwhile the energy to tell this story is gone. I've spent a lot of time writing about stuff I usually don't write about, like disease. Not only do I not feel like writing it , I think "who the heck wants to read about this?"
Meanwhile the energy to tell this story is gone. I've spent a lot of time writing about stuff I usually don't write about, like disease. Not only do I not feel like writing it , I think "who the heck wants to read about this?"
Saturday, June 4, 2011
The audiologist.
I remember a long and difficult day trying to find Beth Israel audiology. It must have been still early spring. A cold, bright day.
I went from one location to another getting directions from various security guards only to be told Beth Israel had closed its audiology department.
Then, figuring there must be audiologists in private practice, I decided to find one on my own.
I could afford what he charged me.
He gave me a complete ENG/VNG workup, made me try to walk a straight line, cheerfully proclaimed my balance "wackadoodle" & sent a detailed report to my primary care doctor suggesting I see a neurologist.
I went from one location to another getting directions from various security guards only to be told Beth Israel had closed its audiology department.
Then, figuring there must be audiologists in private practice, I decided to find one on my own.
I could afford what he charged me.
He gave me a complete ENG/VNG workup, made me try to walk a straight line, cheerfully proclaimed my balance "wackadoodle" & sent a detailed report to my primary care doctor suggesting I see a neurologist.
Or maybe it's...
Tuesday, June 8, 2010 6:48 AM
Maybe tooth decay is what the balance problem & fatigue are all about...
The Daily Grind
In April 2010 I wrote:
I go to Key Food several times a week, but I'm still not prepared for what to eat. Then I think "I must not be doing it right. I don't know how to shop."
An example of "All or Nothing Thinking." I know something about how to shop.
Part of the problem is by the time I get there I'm tired & usually aching & am not thinking imaginatively.
That's the secret to food shopping, imagining the moment when you or others want something. What do they/you want? That's what you should get. I usually don't think past tonight's dinner.
Or past when I get home & get to sit down.
To quote Brent Spiner in Independence Day, "now comes the really icky part."
Diagnosis & treatment. How to pay for it when you don't have health insurance.
Hospitals employ financial counselors to deal with uninsured patients. Contrary to what seems to be a common belief, they don't throw you out to die in the street.
It's worse.
They make you document your financial situation by digging up all kinds of stuff you normally only have to think about at tax time.
Really icky.
In March 2010 I was looking for inner ear testing. My doctor, not liking to expose people to x-rays unnecessarily, tried treating the pain in my hip joints with an anti-inflammatory. It worked great for a while. Then the pain came back. She sent me for the x-ray, thinking arthritis. The x-ray came back negative. I didn't have arthritis.
That's when she started thinking inner ear.
Hospitals employ financial counselors to deal with uninsured patients. Contrary to what seems to be a common belief, they don't throw you out to die in the street.
It's worse.
They make you document your financial situation by digging up all kinds of stuff you normally only have to think about at tax time.
Really icky.
In March 2010 I was looking for inner ear testing. My doctor, not liking to expose people to x-rays unnecessarily, tried treating the pain in my hip joints with an anti-inflammatory. It worked great for a while. Then the pain came back. She sent me for the x-ray, thinking arthritis. The x-ray came back negative. I didn't have arthritis.
That's when she started thinking inner ear.
Here it is.
Friday, March 26, 2010 7:02 AM
I fell on the street again yesterday. This thing is getting worse. Something is affecting, changing the way I walk, and walking that way is what's causing the aches, pains and fatigue. This is why I get so tired. Walking a normal distance is difficult, a struggle. I can hardly walk. That's why I get so tired.
This is going to be hard.
Looking through my journal for more steps along the way to the elusive diagnosis, I'm recognizing how I always had so many other things on my mind, all of which were more interesting to me than whatever the heck was wrong with me. When writing it's possible to forget trivial details like being unable to walk right, especially before it was constant. A year may have gone by after July 2009 before I pick up the thread.
Intro
I have decided to start this blog with the following entry from my journal recording the first time I fell. I haven't corrected all the errors on purpose. I didn't used to type this way. I'm doing a little better now, as I've learned to slow down & work around it.
Wednesday, July 15, 2009 8:25 PM
Yesterday I tripped & fell as M. & I were outside the building. A bad fall, scraped knee. It woke me up that I can no longer ignore the balance problems I’m having. Web search turned up “vestibular” something, dysfunctin – inner ear problem – it could be causing my joint aches & pains and also my fatigure – which now that I’m thinking there might be a cause has gottern worse today, as though I’ve been trying so hard to find anotehr explanation or pretend it’s not happening. Why everything seems so difficult and like such an effort.
I'm not a Dr. House addict, but the few episodes I've seen engendered a fantasy of Dr. House and his crack team of diagnosticians coming up with the one explanation for everything that's wrong with me. That's what multiple sclerosis has been for me.
Getting to that diagnosis was a long journey.
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