In case I forget.

“So how long does it take for most people to get pissed at you?”
October 31, 2006, 11:37 pm
Filed under: Brain Bits, Dr. NeuroPsych A, Neuro

Today I had an interesting experience. I failed a test. Not something I’m used to doing. Oh yeah, sure, Dr. NeuroPsych A said I didn’t fail, that it’s not a pass/fail test but HEY I know what only getting 50% right means. It means I FAILED. Did not. Did so. Did not. Did so.

I took three neuropsych tests today. The first was the Trail Making Test. Apparently, I can draw lines OK.

The second was the Stroop. I did OK on the first part because blue means blue and green means green. On the second part, I slowed down like car with a clogged fuel pump. Green does not mean green. It could mean tan, or red, or freaking blue for chocolate’s sake. Dr. NeuroPsych A said I did OK but in my experience, 65% isn’t OK. It’s not even a “C”. Below average is not something I am comfortable with.

The third is when I hit it out of the park. The Wisconsin Card Sorting Test SUCKS. I got the first set no problem. The second set took me a while. After the third incontrovertible “INCORRECT” I said, “So how long does it take for most people to get pissed off at you?”. The third set was even worse, and by the fourth set I just gave up trying to figure out exactly how the tester was fucking with me and just went with color because everything else I tried didn’t work. So I came in at about 50% on that one.

The last time I failed a test was in 4th grade and that doesn’t freaking count, right?? What a frustrating day. I’m trying to look at this as progress – we now have some level of documentation that shows exactly where my shiny new neurological deficits are. And I guess that’s good, right? You can’t fix something if you don’t know what’s wrong, eh?

None the less, very frustrating. Dr. NeuroPsych A asked me if I wanted to throw something at the tester. I was very gracious and said “He didn’t design the test”. What she doesn’t know is that I came home and stuck pins in the voodoo doll with the new name of “TESTER”.


Here comes that fear again
October 29, 2006, 10:22 pm
Filed under: Dr. Neuro B, Dr. PCP, Fear, Mental Health, RX

This is NOT how I was hoping this would go. Today I started the target dose for Lamictal, 300mg. For most of this past week the burping has been getting worse again and today I had the first series in a few months that was so long and heavy I couldn’t get my breath. I am so freaking scared that this drug is going to quit working again, and I just don’t know how I’ll deal with that. I’m about two weeks out from my first follow-up with Dr. Neuro B.

I guess if this has to happen that it’s best that it happens before I go back so I’ll be able to address it at that time. I just can’t believe this is happening again. I feel so pathetic and self absorbed. I feel like just crying. I have this oh-so-self-pitying thought running through my head: I don’t deserve this! I didn’t do anything wrong!

When I was in the hospital and then in rehab and then all the months of physical therapy and all the surgeries, all the pain and frustration, all the fear and anger, all the stress and imposition on my family and friends, I kept my eye on the endgame: I would overcome this. I would make my limbs work again. They would be better than any doctor or therapist thought the could be because I am strong in mind and body, I am determined to not give up anything. I didn’t do anything wrong and I can get through this.

But now? I don’t know if I can get through this. I can’t force my brain to get better the way I could force my leg to bend or my should to lift my arm up just a little bit farther every day. I can’t fix this through force of will. These past two years have taken so much out of me.

I think a lot about Dr. PCP and that time he spent with me on the floor in his exam room. I try to go back in my head to those moments when he was holding my hand, when he told me God could help, when he told me he would pray for me. I hope he still is. Because I really, really need it.

Yeah I’m still here.
October 25, 2006, 11:06 pm
Filed under: Dr. NeuroPsych A, Memory, Neuro, RX

I know you all thought I had moved to Costa Rica, changed my name to Juanita, and started selling bananas at the docks but no, I’m still here.

I’ve seen Dr. NeuroPsych A a couple of more times. Last time we talked about neuropsych testing and I questioned what the point is. I know what is different about my cognitive/visual/etc skills now -v- pre-brain injury so I don’t see the need for my insurance company to pay $1,500 dollars so I can be told I have verbal problems, memory problems, comprehension problems, visual processing problems…

Dr. NeuroPsych A brought a bunch of dice to our last meeting. The dice were multi-sided like D&D dice. We played a game where she rolled the dice. One die had a big number on it and I was supposed to figure out how to add and subtract the numbers on the other dice to reach the big number. She demonstrated and could do it almost without thinking. I tried four times and, had I been a six year old, I would have thrown the dice at her out of frustration. Instead I just tried and tried and couldn’t do a single one. Not even close. It was like reading Sanskrit.

The burping has really improved over the last few weeks – I’m down in the 15-10% range most days. The last two days have been in the 25% and heavy range so that’s worrying. After my experience with Lamictal earlier this year when it quit working I am hypersensitive to its ongoing effectiveness. I don’t know where I’ll turn if it quits working again. Scary stuff.

Thanks to the two folks who have sent emails checking in on me.  Mainly just trying to be patient until my next appointment with Dr. Neuro B in the middle of November.

What a difference an Allied Moving Van can make.
October 17, 2006, 1:18 pm
Filed under: Dr. Neuro B, Dr. PCP, Texas Comprehensive Epilepsy Program

Something strange has happened. I’ve had the same medical insurance for ages. It used to be that I’d have to have a shot of bourbon before I called them for anything because they were rude, stupid, unhelpful, full of attitude, and generally undeserving of good holiday gifts. This went on for years. Every tiny little claim resulted in multiple calls to get them to cover it.

Then, about a year ago, something changed. They started just….paying claims. Occasionally they would kick something back and I would have to call them. BUT. When I called, they were polite. They were helpful. You could hear the smile in their voices. These call center people had become something of an advocate for me, helping me understand terminology, giving me leading information that caused me to ask the right questions.

Case in point:

Epilepsy Protocol MRI, ordered by Dr. Neuro B, for who I had a referral from Dr. PCP.

Facility charges: $2,749

Insurance adjustments: $1,099.60

Insurance payment to provider: $1,154.59

Patient balance: $494.82

Problem: $494.82

I knew I had done everything right. I had the referral. I had an in-network provider. I had the provider get a pre-authorization for 100% coverage. And now I have a bill for $500. So I call MegaInsuranceCompany.

I got to talk with Craig. He first said, “That’s you co-insurance payment.” I said, “I don’t have co-insurance.” He said, “Let me dig some more.” Then he said, “It looks like you didn’t have a referral.” I said, “I had a referral from Dr. PCP to see Dr. Neuro B, who ordered the test at an in-network facility. I have a Managed Choice plan and this should have been covered at 100%.”

THEN Craig said, “I’m sorry if there has been a confusion. Would you hold please while I research your benefits?” I, thinking yeah I’ll hold for $500 say, “Sure.”

A few moments later Craig comes back on the phone and says the mistake is theirs, that they mis-coded the claim, that he had “validated” it and sent it through for rush payment. He apologized for the inconvenience and THANKED ME for calling so he could fix it.

Then we chatted a little bit…he said it was snowing. I said No Way! He said, Oh Yes. In this rural northern state bordering Canada, it is snowing. I told him how pleased I am with the service I’ve been getting from his company. He laughed and said he hears that all the time. He said that MegaInsuranceCompany had moved a year or so ago from Huge Multi Million Residents City to Middle of Nowhere Rural State and that everyone there is nice. He laughed and said, “In the winter we can’t help but be nice we’re just so happy to have another human being to talk to!”

So…they key to good customer service is to establish your call center in the middle of freaking nowhere. The citizens are happy to have good jobs available. They don’t spend an hour in rush hour traffic commuting to a huge smog infested city where it costs $20 a day to park their cars. The citizens in Nowhere are community oriented, they live at a slower pace, and they still think being helpful and polite is a good way to go.

If I ever leave the Gulf Coast, I think I’m moving to Frozen Land by Canada, just because the people are nice.

Thinking about rebuilding
October 13, 2006, 11:29 pm
Filed under: Brain Bits, Dr. NeuroPsych A, Memory, Neuro

A report on Dr. NeuroPsych A.

A pretty darned positive experience. A striking physical environment, which I might tell you about later. For now, just imagine piles of papers and magazines and file cabinets. And bright colors. Like yellow. We talked for about two hours. It was a focused, good exchange of information.

She is of the school that believes the brain can regenerate connections that are damaged because of various events, including traumatic brain injuries. She’s been at it for many decades and I liked her. We’ll talk next week about neuropsych testing. It’s something I’ve been asked by many doctors, etc., since the accident but no one has said “do this”. I’ll talk with Dr. PCP about it before I do anything of course.

The most surprising and exciting thing about my time with her was when she said, “When you see Dr. Neuro B in November, please ask them for a release form so they will send me their records on you.”

I said I would and added, “The records I REALLY want are those from the injury – the transport, ER, surgery, and inpatient records.” She said that of course they’re mine for the asking. But – I told her that the hospitals charge a lot for those records – to patients and attorneys. But if a doctor is treating a patient for the problem the records pertain to, the hospital will fax them directly to that doctor for no charge.

She said, “Great. Let’s see if we can get them.” I signed the release and am excited at the prospect of reading this stuff. Like the pictures that came to me a few months ago that answered so many questions for me, and gave me so much perspective that I couldn’t have gotten any other way, these records hold the truth about a vital event in my life. They are the only source of this information and I am itchy at the thought that I might get them. The best part – I told her I wanted to read them, highlight them, and then have someone explain to me what I don’t understand. She patted my arm and said, “Let’s get them.”

If I Didn’t Need Therapy Before…
October 10, 2006, 11:13 am
Filed under: Brain Bits, Dr. PCP, Mental Health, Neuro

It’s been since July. Not a constant pursuit, but rather, innumerable phone calls, hours spent on my insurance company’s web site, multiple office visits (and a couple of humiliations).

I have a great PCP. We respect one another. He gives me his best, and I work hard at living with and acting on his advice. He gives good advice. In July, after that unfortunate incident on his exam room floor, he – understandably – urged me to immediately start therapy with a good counselor. He took my insurance company’s list of counselors and marked it up with his recommendations.

But if you have any experience with the modern world of third-party-pay-medicine, you know how it goes. Most of the doctors have 6-8 week waits, if they’re accepting new patients at all. Some you never get a call back from and some make you wish you never had. I live in a big city so I had a larger pool to choose from which makes me luckier than a lot of people.

I tried three over a period of a few weeks. I’ve talked about it here before – one took phone calls during the first session, one told me that all I needed to do was let go of my anger at the man who hurt me, the other I saw three times and on the third visit when he witnessed me having a seizure in his office, LAUGHED at me. As you can imagine, I felt a little burned.

So it’s been a number of weeks and I need to try again. I really need to. Yesterday I began the round of phone calls and web-site trolling again. I had originally gone looking for a neuropsychologist but there was only one covered by my insurance and she was closed to new patients. This time I skipped it completely and tried regular therapists again. Tough morning.

In the afternoon, I ran across the name of a doctor I was pretty sure I knew, and had a good feeling about. I called my sister. “Hey, remember when we worked at that answering service?” (This was 25 years ago – our first jobs.) She remembered and I said, “Remember Dr. XXX?” and she did remember him – the same way I did. So this is a notice to all doctors and therapists: if you’re an asshole to your answering service operators, they WILL remember many years later when they possibly become your patient, or when they are advising friends on which professionals to see. They will ALSO remember you is you’re a kind, courteous, decent human being. My sister and I both remember Dr. XXX as being just that. She said, “I always had a warm fuzzy feeling about him.” I remember also that his patients were always under control, even when they were in crisis, and I always thought that this had a lot to do with his manner. He returned urgent calls promptly. He was kind when we spoke with him – even at four in the morning. His patients trusted that he would be there for them, and they respected his time.

So I called. This is funny – I got his answering service. Ha! I left a message asking for a new patient appointment. He personally called me back in 3 minutes. Instead of taking my insurance info and setting an appointment he talked to me for about 15 minutes, asking very personal and pointed questions but in the kindest and most patient was possible. The point was that he didn’t want to waste my time by seeing me without knowing if he might be able to help me. He DID end up helping me even though he said he didn’t think he would be the appropriate counselor for me.

He urged me to seek a neuropsychologist and gave me two names. I explained the insurance issues and he told me to talk with them about it anyway – he bet they could work something out. He was the Dr. XXX my sister and I remembered.

I called the first neuropsych. He is booked through January except for “emergencies”. I called the second. Her assistant took the call and I asked about new patient appointments. She asked me told hold and – get this – the doctor came on the line. I told her that Dr. XXX had referred me, and she started to ask the same questions he had asked. We talked about the out-of-network problem. She said told me that she wanted to see me, that Dr. XXX is someone she trusts and that if he told me to call her that she would make it happen. We talked a lot about money and you know, we’ve got that worked out. She THEN told me that she needed to call another patient and ask if they would move their appointment because she always tries to see Dr. XXX’s patients immediately. I said, I’m not his patient – he only talked with me on the phone. She said that didn’t matter, she had that much respect for him. I told her that I’m not in crisis, that it isn’t an emergency. She chuckled and said if it were an emergency she would be sending me to an ER.

So I’m seeing her today. She is a specialist in helping people with brain injuries. She knows of my neurologist and, I found out after doing some more interneting that she’s director of a private clinic that she started 35 years ago.

The moral of this story is that everything you do in your life could, sometimes years later, effect what you do in your future. My job 25 years ago led me to remember Dr. XXX. His kindness made me remember him all these years later. And maybe his kindness has led me now to someone I can go to for help. I’m not in a really bad place but I’m not in a really good one, either. It’s been a really tough two years and the last six months have been worse than all the broken bones.