You put orange juice in this?!?

May 13, 2013

I appreciate when people try to accommodate my food restrictions. They go out of their way to make sure I can eat their food, and it means a lot.

Unfortunately, some people don’t take it as seriously as they need to.

Here’s the thing: some allergies kill, some don’t. But all allergens need to be avoided.

So sure, eating beets or peanuts won’t kill me. But I’ll be pretty damn miserable for a week or more. I could have increased pain and increased fatigue, and I’ll definitely have all sorts of horrible digestive problems. So even though I’ll survive, that’s still some pretty rotten stuff that I’d rather avoid.

I’ve done pretty well in restaurants. I don’t go out to eat often and when I do, I make sure the waiter really understands my needs. So far, so good. Unfortunately, eating the food that friends and relatives prepare hasn’t gone as well. In fact, I’ve gotten sick several times. There have also been a few near misses.

A good example of a near miss was this weekend. We were having a lovely family meal. B had gone to great effort to prepare everything. He told me all of the ingredients, to be sure I could eat it. It all sounded fine except for one sauce, which he kept separate. I was thrilled. Later, as he was getting it all ready, I asked him again about the ingredients. Again, it sounded fine. Then while we were eating, someone else asked how he made it so they could copy it themselves. He ran through the preparation, and then mentioned what made it so great – the orange juice used at the end. Wait a minute, he didn’t tell me about any orange juice! I froze with food on a fork halfway to my mouth. I must have said something, because everyone looked at me. I’d already eaten several bites. Oh crap. He shook it off with, “It’s only orange juice.” I was horrified! As it turns out, it was a freshly squeezed orange, so I was ok. Store-bought orange juice would have been a problem. But he didn’t know that. He just assumed it was fine for some crazy reason. Or maybe he’d forgotten it earlier and he was trying to cover his tracks. Either way, I was really insulted. Here I thought he cared enough to work around my food allergies, and he’d left out an entire ingredient that didn’t seem important to him. This is the second time he’s done this. Once could have been a fluke, but twice is the start of a pattern that I don’t want to continue. I know he’ll be insulted when I don’t eat his food anymore, but my health is more important then his feelings.

I think that’s the important thing that so many people don’t seem to understand. My health is more important than their feelings. So if they suddenly realize they’ve forgotten to tell me about an ingredient, I’d rather they just say it than to wait and hope it’s ok. That’s happened with others who’ve cooked food that I’ve eaten. And it’s not ok. And if I say I can’t eat it, that’s not a comment on your cooking ability. It’s that I’d rather not spend the night doubled over in pain because I chose to eat something with a peanut sauce in order to keep you happy. Why is this so hard to understand?

Some of these incidents have turned out badly. I’m just thankful this last one was ok. I’m in the middle (or hopefully beyond the middle) of a bad downturn, and it’s kicking my ass. I’m pretty sure that eating the wrong foods right now would be a very, very bad move. Which is why for a while at least, I won’t be eating anyone else’s cooking.

2 Comments | Decisions, Educating, Expectations, Frustration, Gastrointestinal, Kindness, Rants, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

Welcome back, brain!

May 9, 2013

As bad as the physical symptoms are, it’s the cognitive symptoms that I have the most trouble with.

Last week I started on a downward spiral. It was slow at first, then I thought I was improving, and then it really took a dive. After the dive, I spent two days at home barely moving. Then I went to a medical appointment and the grocery store in the same day and could barely move that night. By yesterday, I was as fatigued as I’ve ever been, and I could tell that whatever was wrong, it wasn’t going to fix itself. I emailed my naturopath. She called back with a list of dosage increases for various supplements I was already on. Extra vitamin D, extra Isocort, etc. seemed like it might help. I took the pills and drops and then went back to watching tv, since I couldn’t do much else. I didn’t even have any interest in reading, which really isn’t normal for me.

Amazingly, I started to feel better almost immediately. I wasn’t sure if it would last, but this morning, I felt almost “normal,” whatever that means. It’s incredible! Thank goodness for that naturopath!

Now, I knew I wasn’t thinking well this week. My thoughts were fuzzy and took way too much effort. I didn’t even want to read. And my emails with a friend just weren’t right. She gets bored at work so we email back and forth most days, talking about her kid, my family, her family, her job, my insurance issues, tv shows, politics, and whatever else comes to mind. Yesterday we were debating the effects of language assimilation on cultural preservation. Part of the time I couldn’t get my thoughts to come out right in the emails. The rest of the time I couldn’t get my thoughts to get out right in my own head! I couldn’t seem to get a handle on what I wanted to say. I knew it was bad, but I didn’t realize how bad it was until I looked at those emails this morning and realized how poorly I was communicating. Today I could organize my thoughts. Today I knew the argument I wanted to make. For the first time in days I could think clearly. What a relief!

I won’t pretend that I have my cognitive abilities back completely; at least, not to the level they were at before I got so ill. But I’m sure grateful to have whatever I have right now. It was a short time, but I really missed being able to think. I’m so glad to have my brain back!

3 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

I simply forget to complain

May 5, 2013

The other night was a really really bad night. It was one of those nights. You know the ones. They feel endless. Time stops. Nothing helps, yet you know that somehow it will get better.

For me, it was a triple whammy. First, I was dealing with nausea and diarrhea. As I have mentioned in many posts before, I finally found a diet that seems to have healed my leaky gut and I almost never have these symptoms anymore. It’s been truly life-changing! So I don’t know where these came from. Second, I was having trouble breathing. This had been a problem all day, but when I tried to lie down to go to sleep, it got worse. Maybe this had to do with the new med? Finally, I wasn’t at home, I was at my parents’ house. This meant I couldn’t just pop in my go-to feeling-like-crap movie to distract me. It was a very very bad time.

After 2 hours of laying down, then sitting up to help my breathing, then laying down, then moving to the couch to try to sleep while sitting up, then going back to bed, all while sucking on Pepto tablets, I did finally manage to get some sleep. I slept fitfully, though, waking up often, and around 7am I finally gave up altogether.

The next day, I acted like it was a normal day, even though I felt like shit. I didn’t mention anything until late in the afternoon when my father asked how I was. He had been awake when I was roaming the house, trying to get comfortable on the couch. I hadn’t said a word to him that night, so he knew something was wrong. Plus, I don’t usually sit alone in a dark room for over an hour. I gave him a basic summary.  I didn’t think much of it, until I noticed my brother-in-law was paying attention to what I said. And then I wondered how it sounded to him, since I’ve never really spoken to him about any of my symptoms, and I hadn’t mentioned anything that day. No one else knew I had been ill the night before. I wasn’t trying to hide it, I just didn’t think to mention it. What was the point? It was over, and I was on the mend.

That night I was on Facebook, reading posts in the many thyroid-related and pain-related groups that I belong to, and I noticed multiple people commenting on the friends who get tired of listening to them talk about their illnesses. It made me wonder, not for the first time, what it is that people say.

Now, it’s not that I don’t speak about my illnesses or my symptoms at all. Of course I do. I suppose there are a few differences for me compared to what I read. I just have no idea what the reality actually is for others. For me, though:

  1. I don’t talk about it every day.
  2. Mostly I only speak about it when it effects plans with a friend, etc. I’ll say I have to cancel plans because I don’t feel well, or that I need to change things to be more sedentary because the fatigue is bad. But I rarely bring it up out of context.
  3. Except for the worst times, I intentionally try to balance things. When I hear myself talking about my health stuff a lot to someone, I make a point of then asking about their lives, and focusing on what’s going on with them. (I learned this lesson the hard way from a friend many years ago. But I did learn from it, which is why she’s still in my life and is reading this on Monday morning at work while she sips her coffee, I bet. *waves*)
  4. My symptoms came on gradually over many years. It’s not as if I had a particular life and then I woke up one day and everything had changed. Instead, the illnesses slowly eroded my life, so the changes were less startling, and therefore weren’t “news” the way they are when there’s a sudden onset of symptoms.

Do I complain? Of course. Do I whine? Occasionally. But mostly, I forget to bring it up. This crap is such a huge part of my life, that it almost feels normal. It’s sad but true. So I forget to talk about it most of the time. And that’s why I can’t imagine what it is that others say about it every day. I’m just curious. What is it you discuss with your friends and family regarding your illness(es)?

And for the times when I really just need to bitch about the unfairness of it all, well, this blog is great for that!

6 Comments | Expectations, Frustration, Isolation, Kindness, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

In my mind I’m different

May 5, 2013

Boston has been having a string of unusually beautiful weather. Don’t get me wrong, I really do love Boston. But usually our weather sucks. I especially dislike summer, since my body is so sensitive to heat and humidity. That’s why this extended Sunny Dayperiod of temperatures in the 60s with lots of sunshine and low humidity has been so wonderful. Even I want to be outside!

But just because I want to be outside, doesn’t mean it’ll actually happen.

I wanted to join some friends for a potluck brunch today. The usual driving route is a mess because of outdoor festivals, so I figured I’d take the T. It’s a bit out of the way to take the subway, but what nice weather for walking! I planned out how to pack up the food. I figured I’d bring both a book to read on the train and also my current crochet project, so I’d have options. I emailed a friend about going together. It was all planned out.

And then I woke up and realized I was in no condition to get out of bed. After more than an hour I got up, but only because my hunger beat out my exhaustion in my body’s debate for which negative feeling to try to resolve. If I lived with someone who could have brought me food, I’d probably still be in bed.

The sun is shining, the trees are blooming, and I’m at my computer. I’ve barely moved all day. While I was reading, though, my mind started to wander. I thought about how lovely it would be to ride a bike. I thought about taking a long walk, for hours, walking miles around these lovely old neighborhoods like so many of my friends do. I thought about how nice it would be to get rid of my car and just walk and bike everyplace.

And then I came back to reality. My body aches. My exhaustion is deep. I haven’t ridden a bike in over 17 years, and for good reason, reason that still exists and which has been joined by even more reasons. Walking 1 mile today is out of the question, and walking 3 miles on even my best day isn’t doable at all. I think about who I am and it just doesn’t match what I can do.

I won’t pretend I was ever athletic. I was never someone who played intense sports and was active all the time. I always watched a lot of tv and did a lot of reading. I don’t think my illnesses changed that. But I also believe that right now, if I got my health back, I would be more active. I would ditch the car and buy a bike. I would walk as much as possible. I would throw a frisbee in the park. And I would have joined my friends for brunch.

Too bad I’m not able to be the person I feel I am.

2 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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