Saturday, July 26, 2008

Gathering the bread crumbs

For a while now, I've wanted to gather all of medical info in one place so I can review it and hand it off to my new rheumatologist.

I obsessed. I looked at Google Health, Microsoft Health Vault, EMRy stick. Through Google Health, I learned of MediConnect Global and My Medical Records.com, all of which seemed like good ideas, until I learned the fees that MediConnect Global charged and I saw Asa Hutchinson, Homeland Security on the board of directors of MyMedicalRecords.com. I'm not entirely sure that my SED rate is a matter of national security, but I don't trust Homeland Security or any agency that would wiretap Americans.

I'd had Wal-greens health info card service for a while, but the web interface was frustrating as heck and I actually never got my card.

What about Web MD? Did I really want to enter all of this info MYSELF?

So I fretted.

Did I want a service? Did I want records that anyone could access anywhere? Did I want to carry them with me on a USB key?

Google Health was both too limited because I couldn't add my own scanned documents, and too scary, because, well, it was Google. I love them, but I already get creeped out when I send an email about a personal topic and am suddenly bombarded with ads. I have no expectation of privacy on the net and I don't usually let that bother me too much, but there seemed to be a line I didn't want to cross there.

Ditto for Microsoft Health Vault. Dude, they can't get my Windows Mobile 5 phone to talk to my Vista computer and they make both operating systems. I don't quite trust them to have it together.

And I don't know if having my health records out there bothers me more because it's SUPPOSED to bother me or if I really do mistrust the big boys of the health business to do right by me.

I looked into getting an efax number and gathering my records myself on a continual basis. It seemed like a gigantic hassle. I looked into having MediConnect global do it for me, but it seemed too expensive (looking back, it would have been about the same. )

I decided to go with MedicAlert Gold. I have a fax line and a voice mail line for $10 a month, what it would have cost to have a fax number through efax or something like that.

I store all my medical records online and when I'm not so poor, I'll buy the software to sync it with a USB key. I'll have the ID card someone can call to reach an operator if needed and the USB key I can give to a doctor and say "here you go."

Still, it's a giant pain in the you know what, gathering up records from the last 32 years. Most places charge $15 - $20 for just the idea and then around 50 cents a page for copying. I just got a bill for $50 from my last rheumatologist for his 5 years of service. Ugh. This project will cost me a few hundred dollars when it's over. Should have just let Mediconnect deal with it.

Is it worth it?

Well, in copying pages of lab reports, I noticed something. My total cholesterol was high in 1995. I was 19. 120 pounds. It later shoots up in 1999, when I was in AmeriCorps, running marathons, building trails, in the best shape of my freaking life.

Not a soul mentioned it to me. I have gone 10 years with cholesterol levels that have gone between normal and in the 240s, where my cholesterol was last winter when everyone freaked and wanted to put me on statins. I am going back and looking at office visits to see if there is a correlation between my high cholesterol and what drugs I'm on.

This is HUGE. I'm struggling so hard with this South Beach Diet, especially sitting in the nursing home and hospital with my uncle and visiting my Arkansas family. They don't make salads that are as good as hamburgers when you're stressed and sad. And when my cousin Karen makes a pie, there is no diet in the world worth missing it for.

This lets me know that my cholesterol levels may have way more to do with my medicine than with my diet. This isn't permission to eat more McDonalds, but it is a chance to say "Okay, I haven't failed. I'm not killing myself with lack of willpower."

It also lets me know that if I can find the correlation, I can stop it instead of adding statins or niacin.

That one little find there might be worth gold as far as having info I need about my health.

Then there is something else in that file -- my letter to voc rehab. I was on a full scholarship in college and did NOT want any voc rehab support. My counselor convinced me to apply and have a case open. My doctor wrote a letter saying I was great now, but I would continue to struggle for the rest of my life and he could not predict anything, but I would most likely need some sort of accommodations in employment for the rest of my life.

Since last April, I have kicked around applying for disability, especially when it became apparent that working full-time was a struggle. That letter might be worth a different kind of gold.

What all of this did is remind me of how far I've come.

I have been having GI issues and over the last week, I was home, so I went to my family doctor. He knew me from the moment I was born. Not many people in their 30s can go to the doctor that delivered them.

I remember sitting outside his office one day, holding my file because I needed to do lab work, flipping through it and seeing my six-week-old check up. I was a little anemic, but overall, fine, it said. I was a college student and bowled over that this file literally had my medical life in this file folder.

My doctor is retiring soon. I'll never get this again, being able to walk into an office after six years away, and remind him about my ulcer treatment in high school and him being able to do the rest of the math and return with a handful of nexium samples and the number of a doctor in my new town to see in 10 days. It was comfortable, like seeing an old friend.

Gathering up all these bread crumbs from all over the country is maybe my way of trying to recreate that. No one will keep the file on me. After so many years, it's destroyed. There isn't anyone to gather a whole file of my life any more. No one is that interested. My new rheumatologist only wanted records from the last few years.

I don't know why it's important that I hold on to these. But it is. It just is.

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