And then I woke up

July 14, 2013

I’ve been feeling relatively good lately. A couple supplement changes have resulted in more energy, and the recent break in heat and humidity have allowed me to go outside, which greatly helps my mental and emotional outlooks. It’s been really fantastic.

That’s why I was so happy yesterday. I managed to go to a potluck picnic. It was cool enough that I felt ok being outside despite the humidity. I spent time with friends. I laughed and had fun. I was there for 3 hours, which felt like a long time. I wanted to see another friend afterwards but I was tired, so I went home and watched a movie. All in all, it was a great day and I was happy.

Then I woke up this morning and I felt lousy. My throat hurt, a sure sign that my thyroid was acting up, and I had that run down-dragged out feeling. I had gotten up to go to the bathroom around 5am, and that’s when my throat first started to hurt. Maybe it was the heat, maybe it was the lack of sleep, but my body wasn’t happy. When I woke up at 9:30, late even by my standards, it was worse. I wanted to go back to sleep. I just felt miserable.

I knew immediately that I’d be skipping the brunch I had been looking forward to attending. It was already late, I definitely didn’t feel up to rushing, or even moving at a medium speed. Plus, it would involve talking to a lot of people I don’t know, which would mean acting like I felt ok even though I didn’t. No way I’d be doing that. And then I though about my afternoon plans. I’d been feeling so good lately that I ambitiously made plans to do two things in one day. So much for that. I just hoped I could keep the afternoon plans! And what about my plans for tomorrow? That’s something I’ve really been looking forward to for a while, so I hope I don’t have to cancel! And later this week I’m supposed to do something with a friend, it’s our one and only chance, so if I cancel, we won’t be able to reschedule.

And then I took a step back. Yes, I feel horrible today. Yes, I could be getting sick and I could spend the next week in bed. But it’s also possible that this is a short-term reaction to something and that I’ll feel better tomorrow. Who knows? That’s one of the annoying-as-hell aspects to these kinds of illnesses: they’re entirely unpredictable.

So for now I’m waiting and hoping. I still haven’t decided if I’ll see my friends this afternoon, even though I’d have to leave my house in just 2 hours. They’ll understand if I can’t make it. I’m definitely skipping the brunch today. And I can decide on everything else later. I just wish I could go back and change that feeling I had when I woke up.

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?

Don’t punt me

July 10, 2013

The best thing a doctor can say to me is, “I don’t know.” Well, ok, that’s a lie. The best thing is, “Here’s a cure.” But if they don’t know the answer, then the best thing is, “I don’t know.” As soon as a doctor says that, I know I want to keep seeing them.

The problem is, too many won’t admit when they don’t know the answer. Of course, this isn’t a problem that’s unique to the medical profession. I know plenty of people who do this in their jobs and outside of their jobs, because they think that there’s something wrong with admitting they don’t know absolutely everything about a topic. I’ve had a lot of problems because of that kind of attitude in the past, so now I know to watch for it and avoid it.

Last week I mentioned that my finger was swollen and painful and that I was happy to ignore it. Well, after a few days it got numb and changed colors, so I thought maybe I should get it checked out. My primary care physician (PCP) wasn’t in, so I saw a physician’s assistant (PA) in her office. The PA said it was infected and prescribed antibiotics. She didn’t seem completely confident, but it did make sense. She told me to come back if it wasn’t much better in 48 hours. Three days later I saw her again. The discoloration was worse and the skin had hardened. She said that she thought it was healing, but clearly she wasn’t sure. She got a nurse practitioner and the NP told me that she thought it was getting better, and if it didn’t get better by the time I finished my antibiotics in 4 more days, then I should let her know and they would send me to a “hand doctor.” Yes, she actually said “hand doctor” to me! I didn’t like her lack of confidence, and when I mentioned that I was seeing my rheumatologist this week, she was clearly relieved. She exhaled and said that I should definitely have my rheum take a look.

She punted me.

She didn’t know what was going on, but instead of saying it, she told me to wait and see what happened, then to go to someone else if it didn’t heal. What kind of attitude is that?!? (And yes, I plan to leave this office after I get some insurance issues worked out – clearly they are not the right ones for me.) If she had told me she wasn’t sure what was happening, I would have respected her honesty. Instead, I found myself distrustful of both the PA and the NP, and nervous about what was happening with my finger.

I did see my rheum. She didn’t know what was happening, but she was honest about it. She felt that it was an infection that was healing, but the spread of the discoloration made her wonder if there was an infection under the nail. She said that she didn’t have the tools to check that, and it wasn’t her field anyway, so she wanted me to see my dermatologist. She asked who I saw, and was pleased that it’s someone she considers to be very good. I asked her if I should wait until I finish the antibiotics to see what happens and she said no, that I should be seen as soon as possible. Now THAT’S how you handle an uncertainty! She told me what she thought was going on, admitted that she wasn’t sure, told me which specialist to see, and insisted I address it immediately. BINGO! There are many reasons I love my rheum, and that’s a big one.

I’m going to see the dermatologist later today. I have seen many people in that office and liked them all. I am seeing a PA today who I have never seen before, because she was the only one with a last-minute opening. Still, I trust that they will treat me right, as they have before. And I refuse to be punted again. I want answers or recommendations, and I won’t accept anything else.

Sadly skipping the 4th

July 4, 2013

This is a barbecue holiday. Well, barbecue and fireworks. That’s what July 4th is known for. You stuff your face with friends and then watch colorful explosions in the sky.

Well, that’s what others are doing today. Not me. Thanks to my heat sensitivity and the ridiculously hot and humid weather, I am stuck indoors with air conditioning. My body is much happier this way, but my mind isn’t. I’m bored and lonely. I have a friend visiting from out of town. He and other friends are all going to a bbq. I would go if it was 10 degrees cooler and the dew point was 15 degrees lower. Unfortunately, I can’t control that. A bunch of other friends are a bbq in Boston. After they eat, they’re going to watch the fireworks from the roofdeck. Again, I wish I could go to that.

It’s not my fault. It’s not anyone’s fault. But it still sucks. Knowing it’s no one’s fault doesn’t change the level of suckiness. So I’ll try to make the best of it. I took a cool shower earlier. I ate a nice lunch. In a few minutes I’ll do my physical therapy exercises. Then I guess I’ll read. So it’ll be just like any other day. Except it shouldn’t be. This isn’t like any other day. It’s one of the few national holidays that isn’t all about family and religion and tradition. Everyone is off work and everyone is celebrating. And I’m sitting my living room trying not to overheat.

Yup, it definitely sucks.

Smile and ignore it

July 3, 2013

My finger hurts. It’s swollen and painful and there’s nothing I can do about it. This is new. I’ve never had anything like this before. There’s no sign of a bite or sting, so it’s probably my immune system acting up, even though it’s just this one finger. It hurts to use it in any way. I’m having trouble with activities from typing to wiping my own ass. So what can I do?

Smile and ignore it, that’s what I can do. I spoke to my doc. I’ll take some extra Vitamin D. I’ll ice it. I’ll take some arnica. But there’s really nothing else I can do, so I’ll just smile and ignore it and move on with my day. It sucks, but so be it. I’ve suffered worse before, and I’m sure I will again.

And since typing is incredibly painful, I’ll make this a short post. Time to smile, ignore it, and read a book. I’m just glad this is one that can be ignored (sort of.)

Lessons in limitations

July 1, 2013

I’ve been trying to convince myself that, if need be, I could do some part time work. It wouldn’t be much, but maybe a few hours every day. It would be something I could do from home, something computer-based. And then I got a reality check.

The other day I started a new blog. I’d been thinking about it for a while and I finally took the leap. This blog is about 2 years old and I’d forgotten just how long it took to set this up. Also, I was in much better health when I set this up. Hell, I was even working full time!

I set aside lot of time and I got to work. I signed up a domain name, and got the basic site set up. I created an email account to use for the work associated with the site. I signed up for a Twitter account related to the blog. Every time I signed up for something new, I had to confirm it through email. I had to make sure it all connected. I spent some time finding just the right look for the blog. I chose an avatar to associate with the blog account, the email account, and the Twitter account. I wrote the “About” page. I really wanted to write my first post, but I just didn’t have the energy.

In the end, I spent more than 3 hours working on my new blog. I got it all set up and ready for my first post. Well, it was mostly ready. There are some security things I still need to do and some other small items to take care of. But it’s mostly done. And by the time I got to that point, after 3 hours of work on the computer, I was mentally and physically exhausted. I was worn out. I was in pain. I’d had it. All I wanted to do was lie down. My eyes hurt, so I figured it would be good to read a book for a bit. I only read 2 pages. I was too tired to read.

So I learned a lesson. As much as I want to think otherwise, I’m not ready for a job, even a part time one. Sure, I spend lots of time on the computer now, but it’s broken up into small bits and it’s mostly reading. Being more actively engaged and sitting for so long was just too much. I’m not ready.

I just wish the insurance company and social security would read this.

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