What to bring to your next medical appointment

October 30, 2013

I have seen way too many doctors in my life. Hell, I’ve seen way too many doctors this year. The point is, I’ve had some practice with medical appointments and I’ve learned a few things along the way. I didn’t think too much of this until I met with my potential new primary care physician on Monday. Twice during the appointment he commented that he wished all of his patients would bring in what I was then handing him. That reminded me that a lot of people don’t know to do these things. So I’m spreading my knowledge. Please share yours in the comments!

Here’s what I bring:

  • Forethought. I think in advance about what I want to get out of this particular appointment. What do I want to learn? What do I want to come away with?
  • Paper and pen, a laptop, or some other means of taking notes. It’s nice to think I’ll remember everything when I leave an appointment but I won’t. There’s just too much new information. By the way, don’t be afraid to ask the doctor how to spell the name of a possible illness or medication. It’s important to get it right so you can look it up later.
  • My list of diagnoses, especially for a new doctor. I have so many diagnoses at this point that I can’t remember them all. Bringing a written list is helpful. You might want to add other relevant notes, such as the year you were diagnosed with each one and how the diagnosis was made.
  • My list of symptoms. Same as above, it’s hard to remember them all.
  • All of my medicine bottles, both prescription and over-the-counter. This way when a doctor asks how many IU of Vitamin D I take, or how much selenium is in my multivitamin, or a what an unknown item contains, I can just hand her or him the bottle to get the answer. After all, saying I take three calcium pills per day doesn’t mean anything unless I know how much calcium is in each pill. Sometimes I leave home the less necessary ones if my bag is too heavy for me to carry comfortably. There are a lot of bottles.
  • A list of questions. It’s nice to think I’ll remember to ask my doctor all of my questions, but when the time comes and I’m busy answering theirs, it’s easy to forget one. I start thinking about this list days in advance of most appointments and I make sure to write down absolutely everything I want to cover.
  • A list of tests I want run. This isn’t necessary for every appointment, but it’s important for many. In this case, the doctor planned to run some of the tests I wanted anyway, but there were several that he hadn’t planned on. When we discussed it, he agreed to run them. It’s a good thing I asked!
  • A list of referrals I need. This is especially important if your health insurance requires referrals in order to cover the expenses of care. Mine does. I brought the list so I’d be sure not to forget anyone.
  • Someone to lend support, ask questions, and later lend insight. I don’t do this for most appointments, but sometimes it’s necessary. I didn’t do it for this last one, but I’ve brought my parents to other appointments. I have also accompanied loved ones to appointments. The doctor never bats an eye – this is normal. And it’s so important.
  • A printout of all labwork from outside their hospital system. Within a given hospital system around here, doctors can see each other’s notes and test results. They can’t see these when they’re from other systems. Since I am seeing doctors in different hospital systems right now, I have to be careful to coordinate everything. Earlier this year I began recording all test results in a spreadsheet. Before Monday’s appointment, I filtered it to show only the labwork run by doctors in other systems and I printed that. My new PCP was thrilled. It included “normal” ranges, the date of the test, and the doctor that ordered the test. However, before I had this spreadsheet I would bring any copies I had of test results with me. If I needed to keep those pages, I would offer to let the doctor photocopy them.
  • Food and water. Some appointments last a long time. It’s good to have a snack for afterwards.

So that’s mainly what I bring. Obviously everyone’s needs are different, but this might be a useful starting point for many people. In case you’re wondering, the two things that made my new doctor especially happy were the pill bottles I’d brought and also my printout of labwork. What do you bring with you to medical appointments?


Why is dinner so difficult?

October 25, 2013

I know the title of this sounds whiny, but I don’t care. I feel whiny.

I was just talking on the phone to someone who worked a full day at a job, then worked out at the gym, then finally got home to rest for just a bit before having to suddenly go out and take care of a sick family member. I spoke to her just after she had gotten home and she was completely exhausted. She was having trouble just getting up and moving around. She was completely worn out.

So was I. That’s why I feel whiny. What did I do today? I had a quiet morning. I met a friend for lunch. We walked over to an eyeglass store and I tried on glasses while she gave her opinion on each. I came home. I read, checked Facebook, answered emails. I was doing pretty well until dinner. Some days cooking isn’t too bad, but this wasn’t one of those days. The oven was on and it was too hot, even though the windows were open. In a tank top, I was sweating. I made something new, and it took too much mental energy. I had to leave the kitchen to sit and rest twice. And that was just preparing the meal. Never mind the effort to eat it or, even worse, wash the dishes.

I’m lucky that I can prepare meals most days. I know that. But still, sometimes I just get so frustrated that cooking one dinner can exhaust me as much as a healthy person on their most hectic, stressful day.

What daily (or near-daily) activity wears you out? What do you feel is so much more exhausting than you ever thought it would be?


The one thing I really miss about gluten

October 22, 2013

People ask me all the time if it’s been hard to give up gluten, or what I miss, or how I do it. Even though I used to wonder the same thing about others back before I’d done it, now I find these questions so strange. It’s not hard, because I feel so much better. There’s no question of how I do it, because I feel so much better; willpower isn’t 20131022_204902necessary because there’s no temptation. There’s one thing I really miss, but it’s not what most people think.

I don’t miss the gluten-filled pastas or breads at all. I don’t miss the cookies or cakes, either. Don’t get me wrong, I love all of these things. It’s just that the gluten-free versions are just as good, and I’ve realized that having them less often is fine. In fact, I now only have sweet desserts about once a month, and that’s plenty for me. I stopped eating pizza many years ago because it made me sick, so I don’t miss that. Gluten-free soy sauce is just as good for cooking as the gluten kind. Gluten-free chicken broth tastes as good to me as the gluten type. I know it’s not easy for everyone to find substitutes, and I’m glad that I have these options. I can’t substitute everything easily, of course, but for the most part I don’t care. Some things I have just stopped eating altogether, and I don’t mind. I don’t miss them. And there are plenty of foods that are naturally gluten-free, too. The truth is, my diet is better now, and I’m happy about that.

There’s one thing I miss a lot, though: convenience. I miss being able to leave my house without thinking about what I’ll be able to eat while I’m out and if I need to bring food. I miss being able to go to a friend’s house for dinner without having to bring my own meal. I miss running errands without packing snacks. I miss being out longer than I expected without worrying about what I’ll eat. I miss grabbing a cider donut with my friends while we’re apple picking. I hear that the gluten-free bakery has them but now, weeks later, it’s just not the same. I miss eating Chinese food in Chinatown; now I can only go to certain restaurants that have gluten-free items. Mostly, I miss not having to worry about it what, when, or where I’ll eat.

But I don’t miss feeling sick every single day and that makes the inconvenience completely worthwhile. I do not have any desire to “cheat” on my gluten-free diet and I doubt I ever will. The benefits are just too great to give it up for a bit of cookie.


Sometimes I want someone to get as sick as me

October 17, 2013

I’ve always been a kind, generous, compassionate, empathetic person. I know that sounds like bragging, but it’s just the truth. I always want to help others and I never want anyone to feel sick or hurt in any way. A friend posted a picture on Facebook today of circus elephants and all I could think was, “Those poor elephants!” So you can imagine how hard it is for me to admit that sometimes I want others to get as sick as I am.

For a long time I’ve fought this. I’ve tried to tell myself that I didn’t really mean it when I thought this way. But that wasn’t true. The truth is, there are some people who I want to feel bad. I don’t feel this way about all people, of course, but it’s still there.

But when someone says that all people wanting prescription painkillers are just trying to abuse the system, I want them to feel horrible, chronic pain. I want them to be in pain every single day, horrible pain, can’t-think-properly pain, want-to-cut-my-arm-off pain. I want them to know it will be for the rest of their life. Then maybe after a few weeks, after they’ve had to deal with the physical, emotional, and social fallout, then maybe they can feel better.

When someone suggests that I should really be well enough to work, that a little exhaustion can’t be that bad, I want them to experience my exhaustion. I want them to miss friends’ weddings, fun outings, living life, having a job, feeling young, feeling independent. I want them to worry about ever dating, getting married, having children, having pets. Then after they’ve fully experienced the horribleness of it, then maybe they can get better.

When politicians say that the already underfunded Social Security Disability system should be cut back because of fraud, I want them to get so ill that they can’t work, apply for benefits, get denied, appeal, get denied again, and then question how they will pay rent, buy food, and live in general. After they’ve fretted and suffered for a while, then I suppose they can get better.

When someone says that we don’t need healthcare reform in this country I want them to get really sick and try to get care. I want them to see that even with health insurance, it can be very expensive. I want them to see that health insurance doesn’t cover it all. I want them to see how hard it can be to get health insurance and how easy it can be to lose it. I want them to spend dozens of hours fighting with insurance companies instead of using those hours to get well. Then they can get better.

When someone judges me, thinks that I’m not too sick to do the things they can do, thinks I shouldn’t be out of work or “acting” sick, I want them to get exactly what I have. I want them to feel the exhaustion, pain, and fear, all while “looking good.” I want them to be judged and to have to defend themselves constantly. I want them to break down crying because it’s all too much. Then I suppose they can get better.

You see, I don’t want these people to feel as sick as me forever. I’m actually not all that vindictive. But I want them to feel it for a while so that they understand. So that they have some compassion. I just want understanding and I really don’t think anyone can understand unless they’ve been through it.

I hate to admit all of this. Today was the first day I admitted my true feelings to myself. Maybe it makes me a horrible person, maybe not. But it’s how I feel and I won’t pretend otherwise anymore.