Sliding backwards

April 28, 2014

Sometimes I feel like Sisyphus. I keep trying so hard to get better, and I keep having setbacks. And yet, I know I’m one of the lucky ones.

I’m one of the lucky ones because I’ve seen improvement overall.

So I’m frustrated and grateful, scared and excited, angry and glad, whipping back and forth between different emotions as my physical health changes. I’m so glad I was able to go to a family party yesterday and still feel ok afterwards, but I’m frustrated that I don’t feel up to going out to dinner with friends tonight. I’m glad that I’ll probably feel up to going to a doctor appointment tomorrow, but frustrated that I probably won’t feel up to doing laundry afterwards. I see a bright future, but I wonder if I’ll ever reach it. It’s like the carrot being dangled in front of me. Family, friends, my naturopath… they all say that one day I’ll grab that carrot, but no one says that it will still be crunchy and delicious. Maybe by then it will have gone bad. Instead of working and socializing and living a so-called normal life, I’ll only be able to work a bit and then be too sick to socialize. Maybe I’ll never really be able to date again. Maybe my dream of being able to actually give a solid RSVP to an event is nothing but that: a dream.

Two weeks ago I was feeling pretty good. I had been seeing a lot of improvement since starting a CPAP machine. I was on a new medication. Things were looking up! I was feeling better than I had in ages and I thought it would continue. The pattern was clear: 3-4 days of feeling great, 1-2 days of feeling crappy, and another day of feeling so-so. It wasn’t perfect, but it was a great sign that things would continue to improve. And then that pattern ended. I don’t know why. Technically, nothing changed. I thought I was in transition towards a better stage of health but maybe that wasn’t it, afterall.

I am trying to focus on the positive. I feel so much better than I did two years ago. I feel better than I did even 6 months ago. And I guess that’s the difference between me and Sisyphus: so far, I haven’t had to start over in this most recent journey. I slide backwards, but not completely. That means that the next time I improve, I’m starting from a higher point. It’s not perfect, but I’m grateful for it.

So right now, as the dark clouds are rolling in and my seasonal affective disorder is kicking up, as my body aches and the fatigue is ever-present, as I wonder if I’ll ever reach that carrot of a future, I’m trying very hard to see the last few years for what they’ve been, and be glad that, at least right now, I seem to be done with them.

 

10 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Isolation, Limitations, Medication, Pain, Rants, 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

So much for “gluten-free”

April 13, 2014

Back in February 2012 I thought I was going to stop eating gluten. As it turns out, what I did was stop intentionally eating gluten. I was still consuming it, though.

In my first year being gluten-free I avoided the obvious sources, like breads and pastas made with wheat flour. I also went online to figure out some of the less obvious sources of gluten to avoid, like soy sauce, lipstick, chocolate, salad dressing, and chicken broth. I found gluten-free versions of all of these, and I thought I was doing pretty well.

Then in the second year, I was horrified to realize how many other sources I hadn’t considered, like sunscreen, hand lotion, cough syrup, lemon juice, cooking spray, vitamins, and dish detergent. Oops!

Now I’m at the start of my third year, and I’m still learning. There are so many areas to consider. Yesterday I reviewed relatives’ recipes they were using for a big family dinner. Hours later it occurred to me: I hadn’t asked about cooking spray. And it’s a good thing I asked, because one person was going to use a type that I couldn’t have. She’s kindly using butter instead.

There are a lot of sources online that list areas to watch out for, but some are incomplete and it’s hard to remember them all. I have a list of food allergies in a Google Drive document so that I can share it with friends when they want to cook for me. I think I’ll make a list of hidden gluten sources on there, too. That way, I won’t have to worry about forgetting to mention something – I can just look at the list!

Where have you found gluten that you hadn’t expected? How have you kept track of all the places it hides?

3 Comments | Educating, Frustration, Gastrointestinal, Healthcare, Limitations, Medication, Rants, 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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