Birthdays: to celebrate or not?

June 29, 2015

There are certain holidays that come with pressure to celebrate. New Year’s Eve comes to mind. A couple years ago I skipped it and it felt sort of nice, in a sad way. I was too depressed about my health to feel that a new year was worth celebrating. I played board games with friends, and was home well before midnight. That worked for me.

This year, my birthday was sort of the same. I was feeling lousy and did feel like celebrating anything, especially not getting another year older which, in my mind, meant another year of lost youth, another year of lost opportunities, and another year closer to the health woes of old age on top of my current health problems. Yeah, I wasn’t in the best frame of mind.

So I decided to skip it.

Whoa! Not so fast! My family and friends didn’t like this plan. I know they meant well, but I was surprised at how much pressure I felt. People kept asking me what I was doing for my birthday, and they were upset when I said I wasn’t doing anything this year. I tried to brush it off by saying I threw a party last year, so there was no need to anything this year. I think they all suspected the truth, though. They knew I was feeling down. Some of them knew I was feeling too sick to celebrate. I wasn’t sure if I’d be up for doing anything at all that day. Would I be able to leave the house? Get dressed? Take a shower?

A friend who isn’t working said she’d take me out to lunch that day. Ok, that seemed reasonable enough. Low key. Simple. And if I had to cancel at the last minute, she’d understand. That made things so much easier! When people asked what I was doing for my birthday I could say a friend was taking me out to lunch. Yeah, ok, it sounded lame. I knew that. But it’s all I had.

In the end, my friend and I had a lovely time. Except for her paying for lunch, and letting me choose the post-lunch activity (sitting by a pretty pond, then chatting at my place) there wasn’t much mention of my birthday. And that’s just the way I wanted it. Simple. Easy.

Holidays are hard enough when you’re single and there’s no default person to celebrate with. I don’t have an automatic date for New Year’s Eve or someone I know will celebrate my birthday with me. Sometimes that’s really tough. Throw health problems on top of that, and then pressure from loved ones to have a bigger celebration that I want, and it’s just too much.

So that’s why I didn’t really celebrate my birthday this year. And I’m ok with that. Maybe next year I’ll have a party again. Maybe not. Either way, I refuse to stress out about it.

3 Comments | Expectations, Fatigue, Frustration, Intrusions, Limitations, Milestones, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Thoughtfulness, Unpredictable | Tagged: , , | Permalink
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It feels so good to be included

June 22, 2015

Over the weekend we had a family thing. As part of the thing, we ate. Simple, right? Well, it’s not quite so simple when you have a lot of food restrictions. But it gets a lot easier when it’s at my mom’s house.

My mom is amazing. She has always been my biggest supporter. Now, with my food issues, she goes out of the way to have food I can eat. There’s gluten-free bread in her freezer and gluten-free crackers in her pantry for when I visit. When I’m there, she prepares meals I can eat. She thinks it’s absurd not to do that. Fantastic, right?

She wasn’t planning to cook this weekend, though. Because of the way things were scheduled, the plan was to get takeout. My aunt wanted to pick up some prepared foods from an Armenian shop near her. My mom asked if I could eat that food and I said no, but that I’d bring my own food.

I always offer to bring my own food. I always say I don’t mind, but the truth is that I do. It sucks having to always bring my own food. It feels awkward when I’m invited to dinner at a friend’s house. I stand out at potlucks. I have to cook more and prepare more than other people do. Logistically it’s hard to always carry it. It’s a pain in the ass, really. And I have to eat the same old boring dishes while everyone else gets to enjoy something new and exciting. Still, what else can I do? I can’t always expect others to prepare gluten-free, dairy-free, broccoli-free, kale-free, peanut-free, alcohol-free, corn-free, caffeine-free etc. foods. It’s too much. So I bring food with me wherever I go.

In this case, there would be 13 people, and I didn’t want the others to have to accommodate me. My mom, ever the ally, made the offer, though. She asked where I could eat. So I listed a few general options. Indian food usually works, for example. My wonderful mother decided we should all eat Chinese food, one of my favorites, because there’s a Chinese food restaurant near them that has a lot of gluten-free dishes, and I’ve eaten there before, so we knew it was ok. I asked that my gluten-free dish be set aside separately, so it wasn’t contaminated.

But that wasn’t good enough for my mom. Oh no. She made sure all of the food was gluten-free! She and my aunt intentionally made sure every item they chose was gluten-free. She carefully stated it several times when she placed the order. And, sure enough, I could eat every single dish on the table! Sure, I skipped a couple (I don’t like shrimp and ribs don’t appeal) but I ate each of the others and loved it. Even better, I ate the way everyone else did. I didn’t stand out at all. It was such a treat!

I don’t expect every person to always find a way to include me in their meal plans. That simply isn’t realistic. But it’s so damn great when they do! Thanks Mom!

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That time I didn’t have anorexia

June 19, 2015

I was horrified when I looked in the full-length mirror and saw how thin I was. I forget why I was looking in the mirror while I was naked in the first place. I usually only looked it in to check my outfit, but that day, I was naked, and I was shocked. I immediately went to my mother and showed her. She took me to the doctor. I was diagnosed with anorexia. I insisted I wasn’t trying to lose weight. They assured me they believed me, that this was a different type of anorexia, that they knew it wasn’t intentional. If I’d only understood then what I understand now, I’d have recognized the bullshit.

I hadn’t thought about that in a long time, but I’ve been reading this book on Celiac Disease and it’s really opened my eyes to a lot of misdiagnoses in my past. As I read about eating disorders, this memory came flooding back to me. I remember being weighed; I was 89 pounds (and about 5’0″ tall.) I was told to drink high protein shakes. The nutritionist wanted me to gain 11 pounds in the next two weeks. I gained a lot, but not that much. I had to continue with the high protein shakes and eat more at every meal. She wanted me to eat more high calorie foods, too. That was my treatment.

Now I wonder how different my life might have been if they’d asked me questions about my health. Instead of assuming this underweight teenage girl was anorexic because she was underweight and a teenage girl, what if they’d probed more? What if they’d recognized my own fear – after all, I was the one who told my mother I needed to see a doctor to find out why I was so thin – and considered other options? What if, when I told them I sometimes skipped meals, they had let me explain why? (I tried to explain but they wouldn’t listen.) Maybe they would have learned about my digestive problems, about how often I was doubled over in pain, about how frequently I had diarrhea. Maybe it would have occurred to them that I wasn’t absorbing nutrients properly.

The doctor and nutritionist terrified me. I’d never had an eating disorder, and suddenly I became anxious about food for the first time in my life. They insisted I had to eat three meals every day. This meant that if I slept in and ate brunch at 11am, I needed to squeeze in another meal before dinner. In college, I would get out of bed early on Saturday to eat breakfast before heading to brunch with my friends an hour later. It didn’t stop the diarrhea, and it certainly made me worry about food constantly, but it did keep me from being quite so thin. I maintained a weight of around 100-105 for a long time. It was better, but still too low.

I don’t remember when my perspective changed, but it did. At 22 I insisted on seeing a gastroenterologist and was diagnosed with IBS for the first time. The appointment was 10 minutes long, with no physical examination, just a recital of my symptoms and then a diagnosis. I wasn’t told there was a diet to follow. I learned that on my own a year later when I accidentally found a pamphlet in a doctor’s waiting room. My first colonoscopy and endoscopy were years later. They ruled out Crohn’s disease and cancer. Then I was on my own again with the IBS diagnosis. I was still constantly sick. My next endoscopy with a different doctor didn’t give me any more information, but it changed the diagnosis to IBS, reflux, and some mystery ailment. The doctor said she wasn’t sure what it was, but that IBS and reflux alone didn’t explain my symptoms. Then she said she couldn’t do anything else for me. I have no idea if either endoscopy checked for Celiac. Maybe they did and the damage to my intestine wasn’t visible yet. Maybe they didn’t look.

It wasn’t until age 32 that I tried going gluten free. My primary care doctor didn’t want to test me for Celiac or send me to a nutritionist. I pushed on seeing a nutritionist and she gave me a referral to someone who was very nice but who, as it turned out, had absolutely no experience with gluten free diets. No wonder it took me another TWO AND A HALF YEARS to eliminate all of the gluten contamination in my diet!!!

I assume that I don’t have hidden gluten in my diet anymore because, for the first time in 20 years, I don’t have nausea, diarrhea, constipation, and abdominal pain on a regular basis! The feeling is miraculous and I am constantly thankful to be free of it all.

Still, I have to wonder, how might my life have been different if, instead of assuming that every underweight teenage girl was anorexic, that doctor had actually examined me and maybe figured out that I had Celiac Disease or gluten intolerance? (Note: I don’t know which I have because I was never tested and the only way to test for Celiac disease is to eat gluten again, which I can’t do. My doctor should have tested me before I started the diet.) Ok, gluten intolerance wasn’t known 20 years ago, but Celiac Disease was, and they never even considered it. For that, I may never forgive them. I’m just so grateful that I finally took things into my own hands, did my own research, and got better. And next month, for the first time ever, I’m seeing a Celiac specialist! I can hardly wait!

3 Comments | Frustration, Gastrointestinal, Healthcare, Medication, Pain, Rants, Symptoms | Tagged: , , , , | Permalink
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The truth about my depression

June 12, 2015

Everyone has an idea of what “depression” is. Some think it means the person is suicidal. Others think it means the person is having a lousy day. Some think you can just snap out of it by wanting to snap out of it. Others think it doesn’t really exist.

The truth is, like just about every other health condition, depression is different for different people. That’s why I’m not writing about depression in general; I’m writing about mine. And more specifically than that, I’m writing about the depression I’ve experienced over the last few weeks.

I’ve spent many years keeping an eye on my mental health, making sure that when I feel depressed, I’m aware of whether or not I need help. When I was younger I spent a short time on anti-depressants that gave me all sorts of side effects but didn’t seem to help much. In hindsight, I wonder if that depression was really a symptom of my undiagnosed autoimmune conditions. Maybe it was, maybe it wasn’t. Since then, I haven’t been on medication for depression, but I’ve definitely had periods of depression. Sometimes it lasts hours, sometimes days. If it lasts longer than that, I know I’ll need help, but usually the worst of it is shorter.

This last time around has been different. I wasn’t depressed over a short-term flare, but over a very real, very large setback. Like that setback, it’s lasting longer than an acute flare typically lasts. I’ll write about the setback another time, but suffice it to say, it was, and still is, pretty bad. I lost 3 years of progress in 1 week. It’s been horrible. So it’s no surprise my emotional health would suffer. On top of that, I could feel my emotions swinging around. It’s hard to explain, but I just knew I was having emotional symptoms from the setback in addition to the physical symptoms from this particular setback. I could feel it in the same way I can feel if my knee pain is from too much walking or from an oncoming thunderstorm (even when one isn’t in the forecast, my knee knows it’s coming.) But try explaining that to a doctor!

Sometimes I want to cry for no particular reason. Sometimes I want to cry specifically because I’m angry or scared or sad. Sometimes I just feel sad. Sometimes I think death might be better than living like this. But I’m not suicidal. Those last two sentences seem contradictory to some people, but read them again. I didn’t say I wanted to kill myself. I thought death might be better. I’ve had that thought many times over the years, but in that same abstract way; never in a way that involved me taking action to make it happen. I’ve had it more in the last few weeks than usual, though.

Still, I’m not too worried about this bout of depression. Yes, it’s unpleasant and unfortunate, but so is my fatigue and pain and all of my other symptoms. And like with all of those other symptoms, I’m doing my best to feel better and I’m doing my best to not make things worse. Can I really do more?

I keep this quote over my desk. (If you know whose it is, please let me know so I can credit them.) It’s always apt, but I think it’s especially important right now to reread it constantly.

“I am doing the best I can with what I have in this moment. And that is all I can expect of anyone, including me!”

Do you get depression in relation to your physical conditions? How does it feel to you? Please share your experiences in the comments. And remember, you’re not alone!

3 Comments | Educating, Expectations, Fatigue, Frustration, Healthcare, Limitations, Pain, Symptoms, Unpredictable | Tagged: , , , , | Permalink
Posted by chronicrants

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