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

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

You know what happens when you assume

April 26, 2013

She called me up in tears. She wanted to talk specifically to me, because she knew I’d understand. Now that I’m remembering it, I’m just so angry!

Amy was having a bad day. She was worried about her sick elderly father. She was just told about a potentially career-altering problem at work. She’s still helping out her husband while he recovers from surgery and can’t do as much around the house as usual. She was in a lot of pain, even more than usual. And to top it all off, she’d just gotten bad news from her doctor. It was a bad bad bad bad day.

On the way home from taking care of her father, Amy stopped to pick up take-out food for her and her husband. She couldn’t Handicapped Parkingmanage to cook. She was exhausted and in pain and didn’t think anything of pulling into one of the handicapped spaces. Like me, some days she doesn’t bother with those spaces. It just depends on how she feels. But just about every day, like me, she looks healthy even though she’s not.

Food in hand, Amy returned to her car to find a hand-written note on her windshield. Someone had written that she didn’t look handicapped so she shouldn’t be parking in that space. And like any one of us who have gotten a similar note, dirty looks, or hurtful words thrown at us, she was angry, upset, hurt, and felt the need to defend herself. Of course, the writer of the note was no where around, so all she could do was go home and cry.

I am glad she called me, because I do understand. And at the end of the call, she seemed to be feeling a bit better. I suggested some self-care: a shoulder rub from her husband, good food, a relaxing movie, and lots of sleep. I told her to call me back if she needed to cry or yell, and to throw or punch a pillow. She apologized because she never complains, but I pointed out that she can’t just keep this bottled up.

And neither can I.

Everyone with an invisible disability experiences something like this at some point in their lives. I’m sorry, but it’s true. I have experienced it more times than I want to think about, but still fewer times than I’d expect. Over the years, though, I’m sure I’ll experience it more.

I applaud those who call out people who truly are fraudulent. I often report cars without proper tags that are parked in handicapped spaces. But none of us has any right to judge others for their perceived abilities or lack thereof. No, I do not look like I need to park in handicapped spaces, but I do. No, I do not seem to need a wheelchair, but some times I do. No I do not look like I’m unable to stand on the bus or train, but I am. No, I do not look like I am unable to work, but I am. That is my reality. It’s no one else’s.

And it’s no one else’s to judge.

4 Comments | Educating, Frustration, Insensitive, Intrusions, Parking, Rants, Support, Symptoms | Permalink
Posted by chronicrants

The incredible amount of time spent on health stuff

April 23, 2013

Phone keypadI’ve been meaning to keep better track of my health stuff. Now, a friend is trying to convince me to write a book about this disability insurance bullshit that I’ve been dealing with. I’d already been thinking about it, but I’m just not sure. Still, in case I do it, I should keep better track of things. So today I started noting the basics. Of course, this doesn’t include the huge amount of time I spent thinking about health-related stuff. And there was a lot more on today’s list that I didn’t get to. No, this is just a short list of a few basic things I did today.

For context, I should have received a decision about my disability insurance appeal two months ago. I figured that would give me plenty of time before the end of April, when I’d have to give notice to my landlord if I was going to move out of my apartment instead of renewing my lease. It was a nice idea, but the insurance company decided not to adhere to the deadline. So now it’s late April, and I was ignoring the letter from my landlord because I just didn’t know yet how to respond. If I move out, it will mean living with my parents.

Health stuff April 23, 2013

11:41 am – Received a call from the landlord’s realtor

11:43 – Spoke to T at landlord’s management office; She offered to either let me decide on the lease renewal by 5/15 or to extend the lease 1 month, which would mean paying another month’s rent but I’d have until the end of May to decide if I’m moving out

12:05 – Left voicemail for lawyer

12:42pm – Called health insurance company to find out about physical therapy benefits; after more than 8 minutes on hold I hung up and ate lunch

1:50pm –  Called health insurance company to find out about physical therapy benefits; found out I need prior authorization for all visits after the intake visit and I can get this from the physical therapist or my doctor

2:23 – Called physical therapy office to make intake appointment but was told doctor order must be faxed over; even though it’s not needed for insurance, they require it themselves

2:26 – Called Dr. K’s office to get physical therapy order; they said they should have it done by tomorrow

Throughout the afternoon – sent over a dozen emails to friends and parents discussing whether I should extend my lease even though I don’t know the disability insurance decision yet

4pm – Called Dr. H (endocrinologist) to get thyroid test results. On phone for almost 8 minutes.

4:10 – Emailed Dr. S (naturopath) with test results from Dr. H

6:57pm – Spent 1 hr 27 min talking to parents about housing; should I extend my lease or move out sooner or do something else? No decision made, but covered everything and will think about it. Lucky to have such supportive parents!

~~~~~~~~~~~~~~~~~~~~~~~~~~~

So that was my day. Except for the unusually long phone call at the end, it didn’t feel particularly unusual. I also needed to cancel a followup appointment, call for more test results, and make an appointment. In addition, I needed to resume making phone calls to try and find a new endo who takes my current health insurance. Maybe I’ll get to some of those things tomorrow. That will be in addition to following up on physical therapy and the thyroid test results and of course figuring out my housing issues.

Now, remember that this does not include my physical therapy exercises, time spent taking and tracking pills, rest, sleep, extra cooking time, research, or any of the other things I do for my health.

I am not writing this to complain. I am writing this to educate. People ask what I do with my days since I’m not working. Well, I may not be getting paid, but I sure as hell am working! Taking care of my health is more than a full time job, and I challenge anyone to try and disagree with me.

Ok, time to go research a new-to-me thyroid drug.

2 Comments | Educating, Expectations, Frustration, Healthcare, Job, Rants, Support | Permalink
Posted by chronicrants

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