My nightmare came true

December 19, 2017

I have had the dream more times than I can count. I’m sitting at a table, talking and laughing with the people there. The people vary, but it’s always some combination of my family and friends. Sometimes my grandparents are there, which is nice, since they are no longer with us and I miss them.

As everyone laughs over the meal, food is passed around. Someone hands me a piece of bread or a cracker, and I eat it. I immediately realize what I just did – I ate gluten! I’m horrified. Then I wake up in a panic.

It takes some times for my racing heart to slow down, to remember that it was only a bad dream, that I did really eat gluten.

bread-534574_1920

These kinds of nightmares make sense. After all, I spend a lot of my life stressing out over food, worrying that I might accidentally eat something that will make me very sick, and knowing it’s easy to miss that thing. Still, it’s not like I would eat a cracker!

I went gluten free 6 years ago. At least, I thought I did. That’s when I stopped eating obvious gluten. It took years to eliminate the final traces of it from my life. Gluten hides everywhere, it seems, and I had never thought it check lemon juice, chapstick, cutting boards, or hand lotion. I certainly hadn’t thought about what my date had had to eat or drink before I kissed them, but it turns out, that is enough exposure to get me sick, too. But eventually, I figured those out.

Finally, thankfully, gluten was gone. And I felt so much better!

Then in September, I got sick. Really sick. I’ll save you the gory details, since they aren’t relevant. My naturopath had told me that, thanks to my lack of gluten exposure, it could take my body up to 48 hours to react. When I first got sick, I couldn’t figure it out – I had only eaten my own cooking all day. Then I remembered what my naturopath said, so I looked at the calendar. And I knew.

2 days earlier, I had eaten dinner in the house of someone I trusted to make a gluten free meal. We had discussed every ingredient, so I knew I would be fine. There was only 1 thing to avoid: the bread. Everyone careful, even passing the bread back and forth on the other side of the table, so crumbs wouldn’t land on my plate.

Later, I was helping to clear the table between dinner and dessert. Passing back to the dining room, I grabbed some grapes off the plate that had been put out. After I swallowed, someone mentioned that the little kid in attendance had taken a huge handful of grapes, realized it was too many, and put some back. The little kid who had been eating bread with his hands. Yikes! But when I felt fine that day I forgot all about it. I remembered only 2 days later.

I was really sick for 3 or 4 days, and it was a full 2 weeks before I could eat normally again. Just from that tiny bit of exposure, probably no more than a crumb.

And that’s what makes this week’s living nightmare so horrible.

There I was, enjoying a meal at the same home, knowing everything was fine. I had checked each ingredient. The soup was great. So was the kugel. I was enjoying the salad. She had made a salad bar, putting out each vegetable in its own bowl, along with chopped up eggs, sliced turkey, and more, so we could take whatever we wanted. I ate one rolled up piece of sliced turkey, and the second I swallowed, it hit me.

“Is this gluten free?”
“Of course it is, it’s turkey.”

And I knew. I spent some time crying, before finally calming down enough to come back. But I was no longer laughing and talking with the group. I was thinking about how I would handle this week.

She had bought the turkey at the supermarket’s deli counter. Maybe it was gluten free, maybe not. There’s no way to know. I know from my own research that most deli counter turkey is not gluten free, but maybe she bought one of the few that are? Still, she didn’t know to have the deli worker clean the machine first, to avoid contamination.

This was the one home where I always felt safe eating, and even there, she wasn’t careful enough. Can I never eat outside of my own home again? It’s so frustrating!

But that’s a long term problem for another day. In the meantime, there’s the question of whether or not I got glutened. There’s nothing to do but wait. Since it took 2 days for symptoms to appear last time, I’m in limbo. I haven’t gotten sick yet, but that doesn’t mean I won’t.

So I did the only thing I could think to do: I stopped eating. For the past 2 days, I have consumed only a few pieces of gluten free bread with some coconut oil, a little plain white rice, apple juice, and water. That’s it. Because not eating much for 2 days won’t kill me, but if I was glutened, and I get sick, I will be VERY glad I didn’t eat much. At least, that’s what I’m guessing.

The truth is, I don’t know. Because, despite the nightmares, this has never happened before. In 6 years, this is the first time I have had any idea I might have been glutened before I experienced any symptoms.

The psychological impact is rough. Especially because all I can do now is wait. By tomorrow I will know. My nightmare has already come true. Now I am waiting to see how bad it will be.

6 Comments | Expectations, Frustration, Gastrointestinal, Pain, Rants | Permalink
Posted by chronicrants

Struggling to endure

December 6, 2017

Last week was a really good week. And that made Sunday so much harder to deal with.

2017-11-29 15.05.34

First I took a long walk around beautiful Walden Pond (and took this photo), stopping a bunch of times to admire the view. It was unseasonably warm, and sitting down to watch the water was lovely. I was able to clear my head and figure some things out.

I made plans. I worked through ideas that had been weighing on me. I made some tough decisions about my finances and my health. By the end, I was super excited to get started! I walked about 2 miles total and felt ok afterwards. I rested that evening, but that was it.

A few days later my mom came to visit. After a lovely lunch, we took a walk in a wooded area. The sign said it was a 1 mile loop, and that seemed ok to us. Well, I don’t know what went wrong, but the path never looped. We eventually made it back to the car, but we walked about 4 miles. I was surprised I felt so good afterwards. Tired, but good. Hmm. Maybe this was a new trend?

The next day I hung out with friends and had a wonderful time. I got home later than I expected and was too tired to go out to a friend’s house that night like I had planned. Too bad. I really wanted to go, but I knew that resting was the right move.

It had been such a fabulous week. I exercised, got fresh air, got clear on a new mindset, spent time with friends.

And then it all changed. I spent all day Sunday feeling run down. I never left my apartment. I cancelled all of my plans for the day. This sucks, but it isn’t unheard of. And I did a lot this week, so I couldn’t complain, right? I trudged through the day, mostly reading a novel and wishing I could do more.

That would have been ok. It would have been disappointing but totally fine. If only that was it.

Sunday night I got really nauseated. Sometimes I know what causes the nausea, but usually I don’t. I tried Pepto Bismol, which usually helps, but this time it didn’t. I tried medical marijuana, which usually helps, but this time it didn’t. The nausea was really bad. My pulse was racing (114 while I was still sitting) and I felt bad all over.

Over the years, nausea has because an emotional trigger for me. I don’t know why it has, when the pain hasn’t, but it just has. So as usual, I started thinking about how horrible this is, and when will it end, and why won’t it ever go away. Yes, I have these episodes a lot less often now that I’m off gluten, corn, and a couple others triggers.

But why does it still happen? Was it something I ate? Something I did? A delayed reaction to the 4 mile walk 2 days before? How will I handle another 50+ years of this? Why did I bother to make plans? Obviously it was stupid to think I could ever get off of benefits and support myself. I should just stop trying. Then I started thinking about how it might be easier to just kill myself and end this. Except that would be very upsetting to my family and friends. I couldn’t do that to them.

I started having those thoughts a few years ago. I know it’s temporary. I’m not too worried, because I only have them when I’m curled in a ball on the floor, too nauseated to do more than stagger to the toilet occasionally. I have never gotten to the point of really wanting to kill myself but even if I did, I wouldn’t be able to until the worst of it had passed, and I never think about wanting to die except when I’m in the worst of it.

So all these thoughts were floating around in my head, and then something strange happened: I started to cry. And cry. And cry. Before I knew it, I was sobbing. Big, ugly sobs. I couldn’t stop crying. I thought I should call someone. (If you’re new to this blog, I live alone.) I ran through a mental list of awesome people in my life, and finally decided to call a friend who lives in my apartment complex. I asked him to come right over and he did. I didn’t explain, but he must have heard it in my voice, because he showed up with his dog, saying the dog was for therapy.

The dog, of course, immediately started to nuzzle me and lick me. He’s that kind of dog. Very sweet. But what I really needed was a hug and some understanding, and I got that.

We sat on the floor while I cried and talked. I always sit on the floor during these spells – for some reason, it just works for me. I cried myself out and we just sat there for a while. Then for some reason, I started crying again. Still, having someone there was extremely comforting.

Eventually I wore myself out. My friend and his dog left (he mentioned leaving the dog, but I was too weak to care for him.) I fell asleep on the couch to an old movie that I often watch when I don’t feel well. I woke up less than an hour later and found the nausea had subsided enough that I could drink a little water. Lots of diarrhea and lots of crying can really dehydrate a person. Then I stumbled to bed. I slept fitfully, but got through the night.

Monday was a bust. I cancelled plans and ate almost nothing. But it didn’t get that bad again. Tuesday was better, and I even left the apartment. And today is better still (though it’s after noon and I’m still in my pajamas, so it’s not fantastic – I try to get dressed by noon every day when I can.)

So why am I sharing this? I’m sharing it for a few reasons. For one, amongst my friends with chronic illness, I’m often seen as the strong one. Strangers online (both through this anonymous blog and under my real name) say that I’m a role model. I have my shit together. I’ve got a good handle on all of this. I work my butt off to take care of my health, research new treatments, find the best doctors and practitioners. That’s all true. But that doesn’t mean I don’t have really bad times, too. I think we all need to remember that the people who seem to be great probably have bad times behind closed doors where we can’t see them. It’s important not to idealize people, but to see them as they are.

It’s a reminder that we all have our struggles. We struggle, and then hopefully we have better days, too. We don’t need to assume someone is perfect in order to have them as a role model.

I’m not perfect. I’m still continuing to fight every day for the best health possible. I want to believe that one day those episodes will end. Until then, I will just keep on trying. Because what else can I do?

4 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Defining “affordable”

November 1, 2017

Only a few people know that I live in “affordable housing.” It’s not something that I want to publicize because of the stigma involved. One friend recently asked me what my rent is, and was shocked at the answer.

That’s because it’s not all that “affordable.”

And it’s about to get worse.

There are different types of “affordable housing.” The kind I live in works like this:

  • I live in an apartment complex.
  • At least 10% of the units need to be part of the “affordable housing” program so that the developers/owners get tax breaks.
  • The rents are set by the state, based on my region. It’s based on a percentage of local earnings or housing rates or something. I’m not sure, and it doesn’t really matter, because it works out the same way.
  • Every year, the state determines how much rents will go up in my region.

As my lease is coming up for renewal, I filled out the 25-page questionnaire that reminded me of the colonoscopy I once had. They need A LOT of information. I have to account for every deposit into my bank account so they know my income is within the affordable housing limits. Cash a check from my parents? That counts as income. Get a job? That counts as income. Sell shit from my apartment? That counts as income. It’s invasive and unpleasant, but I do it so I can live here.

When they gave me the form, I was also told when next year’s rent will be. It’s a lot. Cheaper than what my neighbors in this complex pay, but a lot. Over $1400, not including utilities. Now I live in the Boston area, so rents here are high. Still, this is tough for someone who isn’t able to work full time. (Actually, my income is below their minimum requirements. The only let me move in because I have enough money in savings so assure I can cover my rent. Sadly, a lot of people earn too little to qualify for “affordable” housing!)

The increase bugs the hell out of me for one simple reason: it is a 5% increase! Yes, my rent is low compared to my neighbors, but 5%!

Rents in the area have been skyrocketing for years. My social security disability payments will not go up at all this year. I get the maximum SNAP (formerly food stamps) benefits, and this year they went down by $2 per month because the maximum amount was lowered. None of my other benefits are going up. And let’s say I was working. I might be lucky enough to get a 2-3% raise. Maybe, and I mean maybe, a 4% raise. Maybe. But no one gets a 5% raise.

The cost of food is going up. Housing costs are going up. And benefits are going down. Politicians are saying that these programs cost too much, and they’re right. But instead of finding a way to fund the programs or fix the system, they are reducing benefits to people who need them.

And I am one of the lucky ones. I have enough money in savings to cover my costs for a while. My part time work covers some of my expenses. My parents help out a bit. It all works out. Sure, I almost never get to spend money on fun things, but at least I’m getting by.

I was telling someone that the waiting list for Section 8 housing is now 8-10 years. I am told I should expect to wait another 3-4 years to get into the program. Of course, I was told that when I signed up 4 years ago. She asked what people are supposed to do in the meantime.

And that’s the catch. The “safety nets” only work for people who aren’t truly desperate for them. Yes, people who are homeless get moved up on the waiting list for Section 8 (which is one reason why I get pushed down the list.) But it’s not enough. Someone shouldn’t have to be homeless before they get help.

These things are decided by people with good jobs earning steady paychecks. They presumably can pay for housing and food from those paychecks. So maybe they simply don’t understand what “affordable” means? I’d rather think they don’t get it, than that they don’t care.

Because raising rents based on what the community is earning or paying might sound good in theory. But a 5% rent increase is a lot for someone who wasn’t making ends meet before, and isn’t getting any sort of increase in their own income.

And I’m one of the lucky ones. What does that say about our system?

3 Comments | Expectations, Frustration, Politics, Rants | Permalink
Posted by chronicrants

Fed up with fear

October 24, 2017

I remember the “old” me like it’s someone else. Someone else who took risks. Someone else who moved all the way across the country to try something new. Someone else who traveled overseas alone. Someone else who went scuba diving with sting rays despite her fear of open water (and yes, I was terrified of the open water! I was happy with the sting rays. Go figure.) Someone else who simply did things.

Grand Cayman Underwater 24

My hand, petting a sting ray’s nose. It was softer than I expected.

But no, it was me. Me before I felt this sick and tired and in pain all the time. Except not really. My nausea was much worse back then. The pain was just as bad (or worse), simply in fewer parts of my body. But the fatigue wasn’t the same. The food limitations weren’t so strict. The knowledge of how sick I was hadn’t reached me yet. I figured I was ok, just with pain and nausea, and so I did things.

And now I don’t.

I haven’t been on an airplane in almost 7 years. I miss travel, but I don’t do it. What’s the worst that could happen? I hate to think about it. But would it really be all that bad?

Why don’t I try new things that are fun and exciting? Sure, I do new things, but they’re boring things. I’m writing a book. I tried a new group through Meetup. I have started dog sitting. I might enjoy the things, but they don’t open me to exciting new experiences. They don’t expand my view of the world. They aren’t like scuba diving with sting rays.

For a long time I have been frustrated by feeling like I couldn’t do things. Now I question if maybe I could do those things, but my fear is what’s holding me back. I get different opinions from my doctors. No one tells me sure, it’s no problem if I want to fly to England to visit a friend there. But they also don’t tell me it’s a horrible idea and I shouldn’t consider it. I get a lot of, “you could probably do it if….”

And then I wonder if my fear is rational. I’m worried about having a lousy trip because I feel horrible the entire time. It seems like a waste to spend a lot of time, effort, and money on a trip that I won’t even enjoy. But I could risk that. It’s not what’s ultimately holding me back. No, what’s holding me back is a fear of setting back my health.

If you have been following this blog, you know that 6 years ago, I was struggling, but getting by. I worked a full time job and sometimes went out after work. I liked a fairly “normal” life. Then things got so bad that I was on bed rest 3-5 days a week. Now I am doing much better than I was a few years ago, but no where near well enough to work a full time job. I can’t even manage a part time job. Still, things have been slowly improving. Doing something big and exciting could set me back. And a backslide could take years to recover from. I’m scared to risk that!

And let’s be clear, I’m not only talking about travel. I would love to go ziplining locally, but what if I injure myself, or my adrenals can’t handle the excitement? I want to go to a party and stay out late and have fun, but whenever I try I feel horrible for days afterwards, sometimes weeks, so now I’m scared to do it anymore. I want to try a new type of food that’s free of gluten, corn, and the other foods I can’t eat, but what if it makes me sick? I could go on and on.

Some of these are reasonable and I should avoid them. But others….. am I letting fear hold me back too much?

Fear has it’s place. It protects us from doing things that will hurt us. But right now, I wonder if it’s stopping me from experiencing great things that I will love. Things that will make me happy. Because what’s the point of life if I’m not experiencing it? Then again, what’s the point of life if I’m always making myself miserable?

I don’t have an answer to these questions, but at least I have gotten to the point of questioning my own fears and whether or not they are valid. I’m frustrated that I don’t have answers, but I am glad to be asking the questions.

Maybe one day I will be able to answer: are these fears reasonable?

If you have dealt with similar fears, how have you handled them? Do you take the risks, or avoid them?

8 Comments | Decisions, Expectations, Fatigue, Frustration, Gastrointestinal, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »