When I’m sick after all

November 6, 2013

The thing about having a chronic illness is that I often feel like I have the flu or something like it. It sucks, but I can’t do much about, so I accept it. And I think that acceptance really affects how I handle having something that isn’t part of my chronic illness.

I used to get a sore throat, the chills, and fatigue, and assume I had a bug. It took me many years to figure out that those symptoms had more to do with my thyroid than with a virus, so even though I felt lousy, I didn’t have to worry about being contagious. Unfortunately, that attitude led me in the wrong direction last week. I had what I thought was an especially bad IBS attack for the first time in a long time. It didn’t resolve as quickly as usual, so I starting thinking that maybe I was having a bad response to my new thyroid med. Uh oh! I decided to wait a few days to see what happened. In the meantime I went on with my life. It never occurred to me that I had a bug.

Three days later I was having a really rough time. It was late at night, and I felt truly dreadful. I decided that enough time had passed and in the morning I called my naturopath. That’s when I got the news: I had the exact same symptoms as many of her other patients. There’s a stomach bug going around, it lasts about a week, and I had it. I needed to spend several days at home, resting and not eating. Oh crap!

I immediately thought about the unusually high number of “vulnerable” people I’d been around over the last several days. This was unusual, even for me. I was with my friends and their 4-year-old. I spent time with my 90+ grandfather. I waited with a friend who was in labor, while her husband rushed to get there. I visited with a friend who was recovering from knee surgery. *(&$#^#!!!

I couldn’t do anything about the past. I just hoped no one I had been with got this bug! (Update: So far, go good. No one I was with has reported symptoms, so I don’t think they caught it from me. Yay!) I was so used to not being contagious when I felt lousy that I went on with my life. A “healthy” person would have probably known immediately that something was wrong, and they would have stayed home while feeling crappy. I hadn’t done things ideally in the past few days. But looking to the future, I had the advantage.

Yes, I was disappointed to cancel my plans for the next few days. There was a lot I was looking forward to, but I’m also used to canceling. I didn’t get upset over it. I didn’t even look at my “to do” list. I knew there was nothing on there that couldn’t wait until I was better. Sure enough, a car issue, a cell phone issue, balancing my bank accounts, cleaning up the apartment, writing to my doctor to correct mistakes in my medical record (that’s a whole story in itself!), getting my orthodics adjusted, buying new glasses, getting my friend a baby gift, and taking out the trash, among so many other things, still need to get done now that I’m feeling better. And you know what? Waiting a few days to do them didn’t hurt anyone or anything. In the old days, I would have tried to do some of that while I was sick, or I would have at least worried about it all needing to get done. Now I know better.

Resting is sort of a skill. It can be hard to rest if you don’t have the tools. After years of chronic illness, though, I’m an expert in this area. I have the mindset. I knew I had to take it easy, so I did. I didn’t try to push myself to do more than I should. No problem there. I also have everything I need. I had plain rice in a cabinet and I quickly made some. I pulled ginger root out of the freezer and grated it into hot water. I had apple juice in a cabinet. I put on cozy, comfy clothes that I keep specifically for lounging around the house. I pulled out some relaxing knitting and crochet projects. I had plenty to watch on the dvr and, in case that got boring or not relaxing enough, I had a stack of feel-good moves on my bookshelf. I had an interesting, fun book from the library. To top it all off, I had the large, soft, oversize throw blanket that I cuddled up in for the better part of each day. Yup, no one knows how to relax like someone who’s forced to do it constantly.

So did it suck having to slow down, cancel stuff, and stay indoors on sunny days (especially knowing the lousy weather that’s headed our way)? Yup. But I’ve done it before and I know I’ll have to do it again, so I didn’t let it get to me. I’m just glad that it’s over now, and I can started to get things together again. I have writing to catch up on here, lots of laundry to wash, and that whole “to do” list to catch up on. But at least I’m no longer doubled over with nausea. I guess it’s all relative.

1 Comment | Expectations, Frustration, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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?

11 Comments | Healthcare, Medication | Permalink
Posted by chronicrants

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?

6 Comments | Expectations, Fatigue, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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.

12 Comments | Decisions, Limitations, Medication, Raves, Symptoms | Permalink
Posted by chronicrants

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