Watching the Boston Marathon with a chronic illness

April 21, 2014

It’s hard to explain to people who’ve never lived here, but the Boston Marathon is a BIG DEAL. Sure, everyone knows about last year’s bombing, so they know we want to support our runners more than ever this year, but it was a really BIG DEAL before that, too.

When I was a kid, many years we’d stand along the route and cheer on the runners. I knew they were doing something BIG, but I didn’t understand how BIG it was until I got a bit older. As an adult, I cheered on the strangers and often people I knew, too. I haven’t gone every year, especially since I didn’t always live in Boston, but I’ve gone most years that I’ve been in town.

Last year I skipped the marathon because I just didn’t have the energy. I was sad to miss it, but I didn’t feel like I had a choice. It was just too much. And so I was at my parents’ house when I got a phone call from a relative who wanted to talk about the bombing that we hadn’t even heard about yet. We spent hours glued to the tv, calling and texting everyone we knew who might be at the finish line.

But this year is different. I’m by no means “healthy,” or even back to where I was just a few years ago. Still, I think I could manage to watch for just a little bit. The thing is, I can’t be sure, and so I didn’t make plans with friends to go watch it, and going alone is boring, but I might do it anyway. There are new security restrictions because of last year, so I’m thinking about how I could avoid bringing a backpack. My meds fit in my purse, I can carry water bottles in a plastic bag, maybe I can bring lunch in disposable containers…. I’m planning and plotting, trying to figure out how it could work. I need to protect myself from the sun, stay warm, drink lots of water, and eat a healthy lunch. And I need to make sure I don’t expend too much energy in getting to and from the spot I’ll watch from (whereever that may be.)

So this year, like so many others in the past, I’m hoping to watch at least a bit of the Boston Marathon. I just hope I can do it without wearing myself down too much.

1 Comment | Decisions, Fatigue, Frustration, Limitations, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Places that gluten hides

April 18, 2014

The other day I wrote about how thanks to gluten’s many hiding places, I continued to consume it even after I thought I was gluten-free. There are many places online to find gluten’s hiding places, but it’s hard to come up with a list that makes sense for me. Some things from those lists are relevant and some aren’t, so I decided to make my own list.

Use this list however you want. I’m making it for my own reference, but I hope it helps others. If you don’t have a gluten intolerance but you sometimes cook for someone who does, please be sure to consider this list. And please please please comment with anything you think should be added! Thanks!

Some unexpected places that gluten hides (gluten-free versions can often be found if you look for them)

  • soy sauce
  • lemon juice from concentrate
  • lipstick
  • chapstick
  • sunscreen
  • chocolate
  • salad dressing
  • sauces
  • broths and bullions
  • hand lotion
  • medications, both prescription and non-prescription
  • cooking spray
  • dish detergent
  • liquor
  • oats and oatmeal unless they’re specifically marked gluten-free
  • toasters and toaster ovens where gluten breads were toasted
  • wooden cutting boards and utensils that used gluten
  • oil in restaurants that has been used to fry gluten items
  • rubber dish gloves

Some other terms for gluten (from a handout my nutritionist gave me and an informational email from a body lotion company)

  • atta (chapatti flour)
  • barley (flakes, flour, pearl) or any ingredients containing the genus species name Hordeum Distichon
  • beer, ale, lager
  • breading and bread stuffing
  • brewers yeast
  • bulger
  • communion wafers
  • couscous
  • croutons
  • dinkel
  • durum
  • einkorn
  • emmer
  • farina
  • farro or faro
  • fu
  • graham flour
  • hydrolyzed wheat protein
  • kamut
  • malt, malt extract, malt syrup, malt flavoring
  • malt vinegar
  • malted milk
  • matzoh, matzoh meal
  • modified wheat starch
  • oatmeal, oat bran, oats (but it’s possible to get gluten-free oats) or any ingredients containing the genus species name Avena Sativa
  • pastas
  • rye bread and flour or any ingredients containing the genus species name Secale Cereale
  • seitan
  • semolina
  • spelt
  • triticale
  • wheat or any ingredients containing the genus species name Triticum Vulgare
  • wheat bran
  • wheat flour
  • wheat germ
  • wheat starch

What other places have you found gluten unexpectedly? What other names does it hide under?

Edit: Four months after this was originally published, I’m now adding a new hidden source of gluten that I had missed before: kissing! Watch out for kissing someone who just ate or drank gluten-containing foods or liquids, or who might be wearing gluten-containing chapstick or lipstick.

Edit 2 (12/19/14): After all this time, I’m still finding more hiding places for gluten. Check out this list of dental considerations, including floss and the powder on your dentist’s gloves.

Edit 3 (12/23/2014): Oh boy, here’s another list of places gluten hides. There are so damn many!

Edit 4 (10/26/17): This is a fantastic list of places gluten hides, and it even included a couple of things I didn’t know. I thought that by now I knew them all, so this both amazed and worried me. Still, better to know than to not know!

Edit 5 (7/14/18): Gluten hides in a lot of non-foods that are still super-important to check. Here are ingredients to watch out for in lipsticks (and links to gluten-free lipsticks, which I’m finding very helpful today!) Here‘s a list of ingredients to watch for in hair products like shampoos and conditioners.

13 Comments | Educating, Frustration, Gastrointestinal, Healthcare, Medication, Symptoms | Permalink
Posted by chronicrants

A day off means something else when you have a chronic illness

April 2, 2014

For most of my life, “a day off” meant a weekday that I didn’t go to work or school, wasn’t in bed sick, and could do whatever I wanted.

About a dozen years ago I took “a day off” for the first time that didn’t involve any travel. I didn’t go to work, I got extra sleep, I took the car in for some work that needed to be done, I cleaned the apartment, and I indulged in some hobbies. By the end of the day, I felt fantastic – rested, relaxed, and productive. I remember it so well.

These days “a day off” is a completely different animal. For one thing, I’m not in school or working at a job, so that’s not relevant. Instead, I spend a lot of my time dealing with health issues. I can never get away from my health problems; those are and will always be with me. I can almost get away from some of the logistical issues, though. And I can ignore the “to do” list that needs doing.

I woke up feeling horrible. I’m more exhausted than I have been in a while. So many muscles ache that don’t usually ache. I woke up not wanting to do anything. Luckily for me, I didn’t have anything scheduled today, medical, social or otherwise. So I decided to take “a day off.” There’s so much I should be doing, but I’m not. I should be making phone calls to find a therapist. I should be dealing with a form from my lawyer. I should be doing laundry. I should be changing the sheets on my bed. I should be taking a walk on this rare sunny afternoon. I should have put food in the crockpot this morning. I should be getting a long-overdue haircut. Doing even two of these things would make me feel very productive, but instead I’m not doing any of them. No, instead I’m taking “a day off.”

Here’s what I have been and will be doing:

  • Took a shower at 4pm. I put it off as long as I could, but in the end I felt sort of gross and decided it was worth it.
  • Emailed with some friends (but ignored all of my other emails.)
  • Fill my pill boxes for the week. I do this every Wednesday. I don’t want to do it, and I’ve been putting it off, but it really has to be done today.
  • Watched tv. Will watch more tv.
  • Read my book. Will read more.
  • Knitted. Will knit more.
  • Writing this blog post.
  • Ate leftovers. Will eat more leftovers
  • Will wash dishes. Because there’s no one else to do it.

I haven’t decided yet about my physical therapy exercises. I should do them, but I’m just so tired, and they take so much effort, and it’s my day off, so I don’t want to even think about it. But I know I need to.

So at the end of today, I won’t feel rested, relaxed, and productive like I did that day 12 years ago. But maybe I won’t feel any worse than I did when I woke up this morning. If that happens, I’ll consider it a successful day.

Leave a Comment » | Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Is remission possible?

March 28, 2014

I saw my naturopath yesterday and she surprised me with one of her goals. She said that she wants to get me to believe that once I’m better, I’ll stay better, and that I won’t relapse. That had never occurred to me. [As a side note, I’m very impressed that she picked up on this mindset of mine and chose to address it head-on.]

Several friends and family members keep insisting I’ll get better. I keep trying to explain to them that I’ll never be 100% healthy. I’ll always have some symptoms, and I’ll always have these medical conditions. These are lifelong diseases that won’t ever go away, and I’ve accepted that. The best I can hope for is to go into remission, which I’ve never really thought of as a possibility for me, though I know it’s a possibility in general. As for symptoms, my gastrointestinal problems are almost entirely better and my fatigue has been improving, but I think I’ll always be at risk of those returning, and I’ll certainly continue to have pain. Maybe the pain can be reduced, but no one has suggested they’ll be able to get rid of it completely.

I’ve accepted all of that. I’m ok with that. If we could just get rid of my fatigue, I’d be ecstatic! But what my naturopath said really stopped me in my tracks. This whole process has been so traumatic. The symptoms, their impact on my life, the insurance issues, the uncertainty over my future, have all changed me. There are some good changes, like a new appreciation for the little things in life, and a desire to keep my life simple, without the “busyness” that so many people take pride in. I’m glad to have come to these realizations.

But there have also been some bad changes, like more fear. I’m scared to spend money, because what if I can never earn money again? And even if I’m able to work, what if I get sick again and need it for that? I’m scared I’ll never find a life partner who can handle all of my health issues. I’m scared I’ll be a burden on my parents. I’m scared to make plans for anything big (tickets to a show, a small trip out of town, attending a wedding) because what if I have to cancel at the last minute? And if I do get better, what if I get sick again? Will I have the strength to go through this all again. And what if I never improve in the first place?

I think that all of these fears are natural. I also think I have to get rid of them. My naturopath is right: if I’m going to have a goal of feeling X% better, then when I reach that goal, I have to trust that I’ll stay there. I’ll need that mental attitude to propel me forward. Sure, I might have setbacks. In fact, she agreed that I probably will have them. Then medications will be adjusted and I’ll improve. But she thinks there won’t be many and that they’ll be short, just a few days or a few weeks; not months or years.

I want to believe that. I do. Really. But I can’t. Not yet. After the trauma I’ve experienced recently, I’m just not ready. But I’m working on it. I love the idea. I hope she’s right. So when I eventually get a therapist (I started looking for one recently) I think this topic will be at the top of our agenda.

Leave a Comment » | Decisions, Expectations, Fatigue, Frustration, Healthcare, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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