What is left to eat?

January 15, 2019

Any of you with complicated food restrictions will totally understand. Sometimes it feels like nothing is safe. Like the world is full of food landmines.

Seven years ago I figured out that gluten was a problem for me. Over the next 2 years I figured out a bunch of other foods I had to limit or eliminate. As my leaky gut slowly healed, I was able to bring back some of those foods, while acknowledging that others are gone forever.

For the most part, I don’t mind giving up these foods. I can deal with never eating gluten or corn again. Yes, popcorn used to be one of my favorite snacks. But it’s worth it if it means no longer feeling so sick! So in theory, things were good.

Groceries

Over the years, I have slowly figured out many places where I was getting trace amounts of gluten, and as I eliminated them, I felt better. These were things like sunscreen, moisturizer, lemon juice concentrate, and kissing my then-boyfriend. Some were easier than others to avoid. Let’s be honest, dating gets a lot harder when you have to tell someone at dinner on a second date that you can’t kiss them if they eat gluten – and you don’t even know yet if they were planning to kiss you!

Things were going ok overall until recently. Something is wrong. So far my doctors have thrown around ideas ranging from mitochondrial disease to some sort of yet-unnamed chronic infection to weakened adrenals that aren’t responding to the current treatment. I’m going to see new specialists. But I have also begun to wonder about what I’m putting into my body.

You see, my thyroid med isn’t doing the trick anymore and I want to switch brands, as many patients have recently had to do. The new one is gluten-free, but then just as I was about to get it from the pharmacy it occurred to me that it could have corn in it. It turns out, it does. Hmm. I asked my naturopath what she thought. She said it might be fine at first, but eventually it would probably build up in my body and cause problems. That makes sense. So I’m going to start a compounded medication next week instead.

But then I realized that I hadn’t checked for corn in my current thyroid medication since the manufacturing process was changed last year. And sure enough, it has an ingredient that might have been derived from corn. Yet I still have to take it until the new compounded medication is ready. Every day, I take it knowing that it could be making me sicker, but that I also need it to survive.

Then I looked some more. My vitamin C contains cellulose. So do a few of my other supplements. Huh.

So now I’m wondering if my malaise, fatigue, and brain fog could be from too much corn exposure. I know that small amounts of corn syrup in ketchup, for example, causes a problem for me. So this might be it!

But then just last week I was reminded of the many ways that Celiac Disease symptoms can appear that aren’t necessarily gastrointestinal. And at the same time I learned about some other places where I could be getting trace amounts of gluten exposure that I hadn’t considered before. These are harder to detect, like particles in the air when I’m in the home of someone who has recently baked with wheat flour, or produce in the grocery store that has gluten on it because another customer was touching it. How on Earth can I avoid those? I want a gluten detection service dog (yes, that’s a thing! And they are amazing!) but I am not healthy enough to care for a dog as a pet right now, sadly, much less to train a service dog.

So maybe I will take my new thyroid med and feel better and not worry about this other stuff. Except, even though some symptoms got a lot worse recently, there were issues before, also. So something else is going on. And while I am willing to try a new prescription for adrenal issues and to see the infectious disease specialist, wouldn’t it make the most sense to first eliminate all sources of the foods that I *know* can cause problems for me?

The problem is, I found a list of places where corn can be found, and it’s intimidating. Many of these are common (vinegar) or often found in gluten free foods (xantham gum.) I don’t know how careful I have to be, either. Do I have to avoid honey just in case the bees were fed high glucose corn syrup? If this were a gluten issue I would say yes, but for corn? Am I sensitive enough to need that level of scrutiny?

So now a lot of foods and medications I thought were Celiac-safe might not be and might contain corn that I didn’t know about, produce could be contaminated by other shoppers, gluten might be in the air, and no one knows what’s really safe and what isn’t. Ahhh!

It’s no wonder I’m stressed out about food. It’s no wonder I wish I could just take a safe nutritional supplement and never eat again. Food is a necessity in life, but it feels like a danger, too. Yes, I have to make sure my shampoo is both gluten-free and corn-free and that’s a real pain in the butt to do. Yes, I can’t wear the kinds of lipsticks I like anymore and it totally sucks. Those are emotionally hurtful in different ways. But food is something I can’t ignore. I can say I’ll deal with the lipstick issue another time, but food can’t wait that long. And that – how much I need that thing that has so much potential to hurt me – might just be the most frustrating part of all.

Unfortunately, my insurance will not cover a visit to a nutritionist, and I don’t know how much that would help me anyway. But I would love to hear from others who deal with this. If you have Celiac Disease or corn intolerence, please please please comment below and tell me how you deal with all of this, offer suggestions, or just let me know I’m not alone. It helps so much!

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Getting back to “normal” – whatever that is

October 15, 2018

I’ve missed you! This blog is one of many things that seemed to fall to the side as I struggled to keep up with the million and one medical appointments I had over the last month and a half. I kept wanting to write, but just couldn’t manage to pull myself together enough.

For weeks it felt like all I did was go to appointments. “What day is it? Well, I’m at occupational therapy right now so it must be Tuesday.” When you keep track of the days by thinking about what appointment you’re at, things have gone too far.

Thankfully, things began to slow down a bit 2 weeks ago. Unfortunately, right around that time I was feeling really fatigued. It made sense, given the physical and emotional stress of all of those medical appointments, right? Plus we were having unseasonably humid weather. I took more supplements. I pushed through.

It got worse.

I rested more. Watched tv. Read books. Let my chores wait and cancelled plans I had been looking forward to. I spent my time resting whenever I wasn’t at an appointment. It still got worse, and my stomach started to act up, too.

I thought about my diet. Had I eaten anything new lately? Some apples. But I made sure they were organic (a few autumns ago my stomach acted up and I learned it was the pesticides on the apples.) And I had only eaten 4 apples so far this season. I couldn’t think of anything else until a few days later when I was literally doubled over in pain, barely able to even walk from my couch to the bathroom. And then it hit me all at once: iron. I had started taking iron supplements.

The next day I stopped taking the iron* and by that night, I was doing a bit better. The next day felt even better than that. And now 4 days later, I feel back to normal! Whatever the hell that is.

I’m still tired. I’m in more pain than usual, mostly in my back, neck and shoulders. That’s from last week’s “rest” time on the couch, when I had horrible posture. I felt too bad to bother with it, and I didn’t do my physical therapy exercises either, plus my physical therapist had to cancel our appointment, and now I’m paying the price for all of that.

Still, I feel so much better than I did before, that I’m managing ok. And I only have 2 medical appointments this week! My friends would think that’s a lot, but you and I know better. After weeks of having 3-5 appointments every week this is nothing! And today’s appointment was only 12 minutes away, so there wasn’t even much driving involved. I had enough energy afterwards to go grocery shopping, then I came home and had lunch.

I am now sitting in cozy clothes, catching up on email, finally writing here, and generally feeling a bit more in control of things. It feels so good! In the back of my mind I think about how I still don’t feel up to dating, so I’m putting off signing up for a new online dating app that looks interesting, and I’m intentionally not thinking about how much I want a dog and am still not able to care for one. Ok, I think about it a little. But I try. Overall, though, I feel better physically so I’m trying to focus on the good stuff and ignore all of the things I want to do and still can’t.

Hopefully this week I can get back to having some balance in my life and in my schedule and then, well, maybe I can catch up on the many things I didn’t get to do over the last couple of weeks. After all, sick or not, some things still have to be done.

*In case you’re wondering about the iron, my doctor wants me to try taking a small dose. I was already taking 1/2 the recommended amount. We’ll see. About 5 years ago I had to have iron infusions because I couldn’t tolerate supplements. I was hoping to avoid that this time around, but no luck. I’m anemic so if the supplements don’t work, I’ll have to do the infusions again. But that’s a problem to deal with next week. For now, I’m focusing on getting back to “normal.”


How dare insurance not cover my specialists

March 27, 2018

24 years. If I’m remembering correctly, I have had gastrointestinal problems for 24 years.

First it was ignored. I didn’t think to tell anyone. And I didn’t know that diarrhea wasn’t normal, that not pooping for days at a time wasn’t normal, that nausea and pain weren’t normal. So I suffered in silence.

Then I saw a doctor who wasn’t helpful. I drank prune juice for the constipation and that got me through the worse of it. Sort of.

Another doctor said I had IBS and gave me a prescription.

Years later I went off gluten, then a bunch of other foods. That helped a lot. The episodes that had been coming more frequently backed off. I no longer found myself in the fetal position from gastrointestinal pain 3-5 times a week. Now it was only 1-4 times a month. Only. Hmm.

The problem was, the episodes continued, and my emotional response to them got worse. I found myself thinking more and more often about how I would prefer death. I only thought that way in the middle of the episodes, when I am already in too much pain to seriously consider killing myself anyway, but still, that’s not good.

I never think about death when I have joint pain, even though that pain is much worse. There is something about the nausea that triggers these thoughts now.

Recently I had an episode that was especially bad. I called a friend and neighbor, who came right over. But even his dog, who he kindly brought, wasn’t enough to help me. I sobbed while curled up on the floor, unable to sit up, unable to think clearly, but knowing I needed to not be alone. Eventually the worst of it subsided. But it was enough.

After that, I finally decided to pay the money for the stool test that had been recommended to me. When I saw my doctor the next week, I was shocked to learn that the test was actually covered by insurance! Wow! I took it home, read the instructions, and realized I needed to go off of a couple of my supplements for 2 weeks before I could take the test. So I waited. And waited. And finally it was time, but my joints were acting up and I just didn’t have the mental bandwidth to manage the pain and the test at the same time.

And then, finally, I took the test. For 3 days I scooped poop into a cup. Joy oh joy. But I did it.

It took time for the company to process the test. Then more time for my doctor to get the results, and for the results to be sent to me. But now, finally, months later, I have the results!

And I have no fucking clue what to do with them.

Some aspects of my gut are in balance, others are not. My doctor was honest: there was nothing he could suggest except to take a probiotic (which I already take, but which I had to stop taking for several weeks before the test) and so he wanted me to see someone with more expertise. I appreciate his honesty. That’s why I see him.

There’s just one problem. He recommended 2 different practitioners. And neither are covered by my insurance. At all. Not one penny.

So now I’m considering paying. The one who looks more promising based on her experience is $217 for the first visit and $188 for each followup. I have no idea how many visits I’ll need.

I have the money. And to be honest, if I’m going to spend money, this is a good thing to spend it on. I save as much as I can these days, but really, why am I saving it? To take care of myself. And if I can fix this problem, avoid these episodes from now on, why wouldn’t I do it?

So once again, I am going to pay out of pocket for my healthcare. My insurance is fabulous when it covers my care. But when it doesn’t, I question what is wrong with our system. No one would question that I need help. There is obviously something very wrong. I have limited my diet, tried pills, and followed doctors’ orders. And yet, I still have episodes that have me curled on the floor thinking that death might not be so bad. I need help. And I am so incredibly lucky that I can afford to pay for it.

What if I was one of the ones who couldn’t?


The things we do for our health

February 26, 2018

As I sat on the bathroom floor scooping poop into a plastic cup with a wooden stick 2 hours ago, I thought about how some people can go their entire lives without ever having to do this. Lucky them. I’m not so lucky.

I really really really didn’t want to do a stool test, but much more than that, I really really really couldn’t stand to keep having these episodes. I can handle the gas, the bloating, the constipation, and the diarrhea. I don’t love them, but I can handle them. But I can’t handle the nausea. It just does me in emotionally.

I have had these kinds of episodes since my teens. When I removed gluten and corn from my diet in my early 30s, they became much less frequent. Instead of 2-4 times a week they were *only* 2-4 times per month. Still, that’s far too often. The symptoms changed, too. Some got worse and some got better. And over time, I accepted it, to a certain degree. At least it was less often, right?

The thing is, the nausea, the fatigue, the rest of the symptoms all come on together. I never know when it will happen. Is it my diet? One night I feel fine and another I’m a mess, even when I ate the same thing both times. Maybe it’s something else? I have tried diets, so it’s time for the next step.

Someone suggested this particular test to me. I asked my doctor and was shocked to learn that insurance will actually cover the cost (a rarity for many of the tests I ask for.) His office gave me the kit, and I put it off.

First I needed to do an adrenal test – the fatigue was a more concerning symptom. Mentally and emotionally, I could only handle doing one at a time. It took a few weeks before I could schedule that test, since I had to change some things about my medications to prepare for it.

I gave myself a week, then decided to do the stool test. I read the instructions and learned I had to be off probiotics for 2 weeks before the test. I stopped taking probiotics. 2 weeks later, I was sick. I waited. I finally felt better but my schedule was a bit busy. I knew I needed to be home and not rushed for this. My schedule cleared and I went to take the test. I read the instructions again and saw that I had to be off another of my supplements for 2 days. I went off those. I felt sick again. Then if I did the test, I would finish on a Saturday, and it has to be mailed Monday-Friday, within 24 hours of finishing. I waited a couple more days.

FINALLY it was time! I was nervous and not wanting to do it, but I did it. Because I had to. Because I need answers. Because each time I have one of those episodes, I start to wonder if I would be better off dead. The only times I feel at all suicidal are doing those episodes. I don’t know why. They last for hours that feel like weeks, but never more than a few hours. The pain can be so much worse and last for so much longer, but it never makes me feel that way. These episodes have to stop.

So I did the test. It was a 3 day test. For 3 nights I had stress dreams about the test. The first day I realized it wasn’t fun, but not nearly as bad as I’d expected. But still, I had the dreams. They woke me up at 5:15am today. I want to believe it was worth it.

I finished the test just a couple hours ago. The samples are sitting in my refrigerator (carefully packaged, of course) and ready to be mailed when go out this afternoon. And then I wait. And wait. And wait. It will only take a few weeks to get the results, but it will feel like so much longer.

After many months of procrastination, then another 6 weeks of mostly legitimate delays after I received the kit, I finally feel SO CLOSE to potentially having some answers. I don’t want to hear I have parasites or infections to deal with, but those might be better than a lifetime of these episodes that make me literally want to die, that I can’t predict, and that continue to get worse over time.

So yes, I scooped my own poop into plastic containers multiple times. That’s something most people never even consider doing. But maybe, hopefully, it was worth it.

 


First kisses and gluten ghosts

January 10, 2018

I recently went on two first dates. And both times, the gluten ghost haunted me.

If you’ve read this blog for a while, you know that I date, but not very often. So going on 2 first dates in a short span is really unusual! And each time I have a promising first date, it’s the same story: how can I tell the person about my gluten issues without making it sound too scary?

I went off gluten 6 years ago, in February 2012, and within months I saw signs of my health improving. It was slow going, and as I eventually learned about the many places gluten was hiding, I got sick less often. Still, I noticed that I often got sick after dates. Not every time, but a fair amount. Maybe it was from stress? Maybe I was overdoing things by going out and having to be “on” for so long?

It took 2.5 years after I first went gluten free, but finally I figured out the problem: kissing! There I was, sitting down with my then-boyfriend, watching him open a beer, when it hit me: he was going to drink that gluten-filled beer, then kiss me, and I bet that would make me sick! I told him my theory and asked him to brush his teeth after the beer, but instead he said he would just skip it. I didn’t get sick that night.

Or any other night I went out with him.

Then we broke up. And the next first date I had went great. I wanted to kiss him and thought, maybe I was wrong. Maybe it was a coincidence. We had met up for ice cream and he only had vanilla, so maybe it’s gluten free anyway! We kissed that night and a few hours later, I was really sick. Huh. So much for wishful thinking.

Ever since then, I have avoided first date kisses. Even if we don’t eat anything, maybe they’re wearing chapstick or lipstick that contains gluten. It’s a big risk.

I asked a friend with Celiac about this and she said she, also, can’t kiss someone who has eating and drunk something with gluten. But she said first dates aren’t a problem, because she doesn’t kiss on the first date anyway. I guess that makes it a bit simpler. For me, though, it’s an issue. I often kiss on the first date if I like the person and it’s reciprocated.

So that brings me to my two recent first dates.

The first went very well. We met for coffee and tea, and totally hit it off. After a couple hours, I suggested we eat lunch. I had already mentioned the Celiac Disease, and suggested a nearby restaurant where I knew I could eat. Over lunch, I found a way to slip in a mention about the kissing issue. I’ve been getting better at that over the years, but it still feels awkward.

After a looooong first date, almost 6 hours together, I knew I wanted to kiss her. But I couldn’t, because we’d just eaten lunch and her lunch was definitely not gluten free! Plus, she was wearing lipstick. Damn!

Thankfully, on our second date she didn’t wear lipstick (I took this as a promising sign) and we did eventually have our first kiss, with no fear of getting glutened. Yay!

Then I went out with the other person. Again, we met for coffee. It was a good first date, but not amazing. I was pretty sure I would go out with him again, though. We had met in the evening, and after an hour and a half the coffee shop was closing, so we said goodnight. I had found a way to mention the Celiac Disease, but not the kissing issue. Not that it was relevant – we had just met (we met online, so this was our first in-person meeting) and it felt more like a get-to-know-you kind of thing than a real date.

So there we were, standing on the sidewalk saying goodnight, when suddenly he was kissing me. I didn’t see it coming! We separated, and while my brain was still trying to figure out what just happened, he kissed me again, and his tongue was in my mouth! Yikes! This was too much. Forgetting the gluten issue, it just didn’t feel right at all. We said goodnight and I walked to my car feeling very confused…. and nervous!

I only saw him drink tea, but had he eaten before that? Would I get really sick? It was nerve-wracking to not know!

The gluten ghost haunted me that night and the next day, and when I didn’t get sick, I was finally able to relax.

These two dates were so different. They felt different both at the time and after the fact. But both had the same gluten ghost haunting them. The first time the ghost prevented me from kissing my date (assuming I wouldn’t have chickened out, that is) and the second time it haunted me afterward from the unexpected and unwanted kisses I received.

Dating is hard enough. I really wish I didn’t have to deal with the gluten ghost complicating it even more!


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.

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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.


Struggling to endure

December 6, 2017

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

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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?


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