What is so hard about sharing medical records?

July 11, 2013

I put a file into Dropbox on my computer, and suddenly I can access it on my phone or on another computer’s browser, as long as I have the password. The technology is there, so why can’t we share medical records?

My last rheumatology appointment was good, but it could have been better. It would have been nice if she knew what blood tests I’d had done lately. Unfortunately, she had zero information on that. I have some info, but it was at home. I hadn’t thought to bring it. Digitalization of medical records has been spreading and I love it. Unfortunately, at best it has been happening within individual medical practices and hospital systems, but not across them. This means that if you see 5 doctors at Beth Israel, they can all see each other’s tests, notes, comments, etc. However, if you see 4 doctors at Beth Israel and 1 doctor at Mass General, the Mass General doctor can’t see anything from the others. And this is what happened to me at my rheum appointment. She had just switched to a new hospital. The old hospital was supposed to send my records over months ago, but they’re backlogged and hadn’t gotten to it. Even worse, none of my other doctors are in this hospital system, so she can’t see their notes, either. We were stuck.

As for me, I can only see certain things from one hospital. Thankfully, that hospital realizes how useful it is for patients to see their own medical info. I can’t see everything, but I can see most test results. That’s fantastic! Unfortunately, I can’t see any other information, and the other hospital networks I’m using don’t have this option as far as I know.

I’m certain it doesn’t have to be this way. Yes, it’s important to have security measures in place. I definitely don’t want random people seeing my medical information! But should I be able to access my records whenever I want? Why must I make multiple phone calls, pay a fee (paying a fee to see my own records is absurd!) and wait for weeks or even months just to see my own records? Why can’t my doctors all see each other’s notes and labs? It would improve my healthcare greatly!

It is unrealistic to assume a patient will only see doctors in one hospital network. In fact, that’s one reason my original diagnosis was delayed for so many years – my PCP refused to refer me outside of his network, and they didn’t have the right specialist. If I’d been sent to the right specialist, I could have potentially been diagnosed many years earlier and had very different outcomes.

I have been going to the trouble of getting copies of all of my labs over the last several months. It’s a big effort, bigger than it should be, so far, it’s been worth it. And that’s why later today, I’m going to head over to the library to copy those labs (yes, I know photocopiers save images, but what choice do I have?) I’m seeing a new doctor in a new network in a few weeks. I’ve been waiting for months to get into this particular practice and I finally have an appointment. Unfortunately, he won’t have access to any of my medical records, so it’s up to me to bring them. I will spend time, energy, and money to make copy after copy. Then I will bring the large stack of papers with me, and it will be up to the doctor to find the relevant ones, since there won’t be any easy sort or filter options as there would, or at least should, be on a computer.

This system is harder than it needs to be and it’s hurting patients. It needs to change. If the goal in seeing doctors and other medical professionals is to get healthy, then shouldn’t this be considered a priority?

1 Comment | Educating, Expectations, Frustration, Healthcare, Limitations, Politics, Rants | Permalink
Posted by chronicrants

A day to celebrate! DOMA is dead!

June 26, 2013

Obviously I was upset yesterday. And sure, I should probably write about the pain flare I had last night while I was sleeping. But I just can’t. Today is too great a day to dwell on anything bad!

For those who don’t know. The U.S. Supreme Court ruled today that DOMA is unconstitutional, and it also ruled that Prop 8 had no standing. In English, the Defense of Marriage Act is dead, which means the federal government will now recognize same-sex marriages performed in the states where they are legal. The Proposition 8 ruling means that same-sex marriage is now legal in CA.

When I was younger, I just assumed that if I grew up and fell in love with a man then I’d get married, and if I fell in love with a woman we’d live together. That was it. Then in 2004, same-sex marriages started taking place in my home state of Massachusetts and everything changed. Suddenly, I could marry a woman! For some people this had an immediate affect. Since I was single, I wasn’t about to get married, but it still changed my attitude and also others’ perceptions of me. After all, if we’re equal enough to get married, maybe we’re just plain equal.

Even with more and more states recognizing same-sex marriages, the federal government did not. This affected taxes, inheritances, hospital visitation rights, health insurance, immigration, and so many other issues. I felt the inequality myself. I saw it affecting my married friends.

Today that changed. After days, months, years of waiting, we finally had the answer: the Supreme Court ruled that the federal government must recognize all marriages equally, just like it had before DOMA was created. I felt the initial excitement: WE WON! And then it started to sink in. I started to feel it. We won equality. We won rights. We were going to be treated the same as everyone else. I watched my Facebook and Twitter feeds fill up with the excitement. I saw the occasional detractor and dismissed them entirely. They’re falling behind the times. I have no doubt that one day soon, same-sex marriage will be legal throughout the country. The dominoes are falling. The objectors are realizing they have no valid points. The general public is realizing that if they’re straight, this really doesn’t affect them directly at all. And soon this will just be another embarrassing part of history.

I usually make an effort to write only about chronic illness-related issues but, well, this is my blog so I can write whatever the hell I want, right? And today I really can’t write about anything else. It’s too great a day.

7 Comments | Educating, Expectations, Milestones, Politics, Raves, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

It feels great to do ANYTHING proactive!

April 5, 2013

I’ve been a proactive person for as long as I can remember. Sure, I procrastinate a bit. Ok, I procrastinate a lot. But when it counts, when it’s important, when I care, I really get things done.

In my personal life, I get things done. When the cable company wasn’t fixing my service, I called them and hounded them until it was fixed (and I received multiple apologies from them!) When I needed medical paperwork at school or at work, I always took care of it; even in middle school, I was careful to get notes from my doctors so I would be excused from gym class and in high school I took care of special arrangements for a non-standard SAT test and got note-takers in my classes. You name it, I did it. Even as a child, my parents knew I’d take care of everything and never interfered at school or at my jobs. They were there for advice and support, but I was the one who did everything.

In my professional life, I was even more efficient. Just watch a vendor try and stiff me on a service or not meet a deadline! One particular staff member had trouble meeting deadlines, so I broke down projects for her and sent reminders for each piece well in advance on their due dates. When something broke, I got it fixed. I got out ahead of problems and stopped them in their tracks.

I like being in control. I like taking steps to get things done. And that’s why it’s so hard to not have any control in my current situation. Of course there isn’t a ton I can do to control my health. I do what I can, but it’s limited. I want to see certain doctors and try certain treatments, so I get frustrated at financial limitations. But I’m trying. With the disability insurance, though, I’ve been completely stuck. If it was up to me, I’d call the insurance company every single day and bug the hell out of them until they approved my claim just so they could get rid of me. Unfortunately, I have to rely on my lawyer to work with them. I sit and wait and then wait some more. I get notices of delayed decisions and can’t call them up to find out why on earth there’s a delay. It’s infuriating.

So it’s no surprise that I found myself in a fantastic mood a couple hours ago. I spoke to my lawyer yesterday about the latest delay, which I found out about earlier this week, even though it took place more than two weeks ago. We discussed my lack of options. There’s no regulatory agency. Calling the attorney general won’t help. Calling my senator won’t help. Calling the company isn’t an option for me, and she already left a message (which hasn’t been returned!) Suing is my only option, and it’s likely to fail. They know there’s nothing I can do, so I asked my lawyer why on earth would they bother to do it at all? Why not just delay another 6 months? After all, even if they approve me, they do not owe me any interest or reimbursement for costs I’ve incurred. So why wouldn’t they continue to delay it? My lawyer had a good answer: to keep their clients happy. They don’t want to piss off my employer (well, former employer) by denying every claim that’s submitted. That gave me an idea: what if I called my employer’s benefits person and told her what was going on? My lawyer didn’t object.

And that’s how I found myself finally doing something useful today. After 2 days of phone tag, the benefits person and I finally spoke. The call was short, under 10 minutes, but it was enough. I told her my story and she was concerned. She took notes. She asked the right questions. She expressed sympathy for my situation. And then she said she’d email the insurance company to find out if the latest internal deadline of theirs was met. She warned me that they wouldn’t give her an answer because they would only give that to my lawyer. However, she felt that by asking the question, they would realize they were pissing off their client and would move their asses on my case. Ok, she put it in more professional language, but that was the idea of it. She promised to get back to me next week when she heard from them.

This may have been the push that changes everything. Or it may accomplish nothing at all. But at least I did SOMETHING to help myself. After so many months of just waiting, it feels great to do something to potentially move things along. I just hope it works!

4 Comments | Expectations, Frustration, Limitations, Milestones, Politics, Rants | Permalink
Posted by chronicrants

How dare you judge how I treat my pain!

March 26, 2013

This has been a very bad pain week. I have a guess about why things are so bad, but it doesn’t help me to fix the problem. On our lovely pain scale (we all know that scale, don’t we?) I had a lot of time at 2s and 3s for a while. Lately it’s been at 5s and 6s. I can handle that. I don’t like it, but I can handle it. But when it was getting into the 7s and 8s and 9s and disturbing my sleep for several nights in a row, something had to change.

Two nights ago I slept for only 4 hours, and it wasn’t great sleep. The pain woke me up often before getting so bad that even dozing was impossible. Long before dawn, I lay in bed and knew I wouldn’t be sleeping again that night (morning?) I thought about getting painkillers. I take them very rarely because I don’t like the side effects. I take them so rarely that my last set expired ages ago and I’d thrown it out. When their office opened, I could easily call my doctor and have a prescription sent to my pharmacy, but did I really want those side effects? And let’s face it, it only helps occasionally and minimally. I really hated that idea.

Some of you may know that medical marijuana was approved in my state in last November’s election. I’ve written my views on it before, and they haven’t changed. So you may think this is a good option. Unfortunately, the regulations have not yet been written by the state group in charge, and probably won’t be for several more months. Without regulations, doctors won’t prescribe it and there are no dispensaries to sell it. Still, what other options did I have?

Around 5:30am I was exhausted, in pain, and really pissed off at my body. First I emailed one of my medical practitioners and asked if the prescription painkillers would interfere with any of my current meds or supplements, just in case. Then I emailed a friend and told him about the horrible pain. I asked him to put me in touch with a friend of his who sells pot. I was going to write to a few more friends who might be able to help, but I was just too tired and in too much pain to type. I figured I’d write to them later.

The doc wrote back that I’d have to discontinue a couple of things but that it wouldn’t be a big deal to take those painkillers. But I still didn’t want to take them. I dreaded it. Then the friend texted me. We spoke on the phone and he said he had what I needed and would give it to me for free because it was a tiny amount. He wasn’t kidding – the scale had trouble registering it. Even with the plastic bag it was barely a gram. But it was enough to see if it would work.

I knew I wouldn’t go to jail for this. Even if I wasn’t protected by the medical marijuana laws, marijuana was decriminalized in this state a while ago. At worst there would be a fine. But there’s still the stigma. I told a couple of friends, though. People joked about it, not understanding that my goal wasn’t to get high, just to get away from the pain, and that it sure as hell wasn’t a funny situation to me.

The thing is, I can’t smoke. My lungs just won’t go for it. So I have to eat it. I looked up online how to cook it, then went through the process. The last time I ate it, I got really paranoid (but it got rid of the pain!) Of course, it turns out that what I ate was incredibly strong and I didn’t know. This time I was dosing it myself. I did about half of what I figured I should, and just hoped it would work. Thankfully, it did. I didn’t really get high. I was a bit mellow and smiley, but that was it. The amazing part was that I wasn’t in pain! I walked down a few stairs and it didn’t hurt! I held the tv remote in my hand, and it didn’t hurt! And then the best part: I slept! I slept deeply for about 9 hours and it felt great! I slept without noticeable pain. Today, I feel like a new person. Sure, I’m in pain, but I feel a lot better just from having slept. I won’t have more pot today because, really, if I took it whenever I was in pain, I’d be on it all the time. But if the pain gets worse, if I can’t sleep, then I’ll have more in a day or two. And at least I know it’s a decent option with no unpleasant side effects.

The interesting thing was when I told a friend about it this morning. She’s no stranger to pot. She smoked a bunch of times in college, and always thought it was weird that I didn’t try it until much later, in my late 20s. But as she’s gotten older, she’s gotten more conservative. She made a face (you know the type) and said how she’s not so sure about this whole medical marijuana thing. It’s not safe. It’s addictive. It shouldn’t be legal.

I was shocked. I pointed out the supposed safety of prescription painkillers. And their levels of addiction. And their side effects. She stopped talking, but I don’t think I convinced her; I think she just knew she was wading into dangerous territory. It’s one thing to suggest a better treatment, but dumping on the best treatment method I’ve found for myself? She knew I was about to get very pissed off. So she backed off. But now I wonder… should I try to make her understand? Because if she’s judging me, she may judge someone else. And she won’t speak up when she hears someone else making the same judgments.

I get very angry when politicians make these judgments, and it’s just as bad, or maybe worse, coming from friends who should understand my situation. I am not hurting anyone. But by denying a treatment, they are hurting me. How dare anyone judge how I choose to treat my pain? Especially when they themselves are not experiencing pain every single damn day of their lives. How dare they?!? If they have a headache, how will they feel if I take away their Tylenol? For that matter, what if I took away something that’s really not all that helpful or healthy but widely used, like coffee? Let’s make coffee illegal on the basis that it’s unhealthy and addictive, and then let’s talk about how people make decisions for their health. I bet a lot more people would be saying it should be a personal choice. Well, if coffee should be a personal choice, then so should medical marijuana.

At the end of the day, this is my body. It’s my pain. If I can lessen the pain in a way that won’t hurt anyone else, then why on earth would that be a bad thing? And what would give you the right to judge me for it?

2 Comments | Decisions, Educating, Fatigue, Frustration, Medication, Pain, Politics, Rants, Symptoms | Permalink
Posted by chronicrants

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