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.

We won! Celebrating while sick

June 27, 2015

Yesterday was a big day here in the U.S. The Supreme Court of the United States (SCOTUS) issued a ruling that makes same-sex marriages legal throughout the country!!!!!

Are you done dancing your jig yet? Ok, let’s continue. This is huge news. SCOTUS also issued a big ruling for health

Equal Marriage Celebration Rally

Equal Marriage Celebration Rally

insurance coverage in this country several days ago. That’s huge too, but it doesn’t have the same kind of emotional impact for me. There weren’t celebrations all over the country for that (at least, not as far as I know.) So today I’m writing about the equal marriage ruling.

This is a good thing for our entire country. Many of my heterosexual family members and friends are saying that, too. But as a bisexual woman, that feels very personal. I’m currently single. Maybe one day I’ll get married, and when I do, it might be to a man or it might be to a woman, but whoever I marry, that marriage will be recognized throughout the country!

I have many friends who woke up yesterday knowing that their marriages were only recognized in some states. A few hours later, those marriages were recognized in every state! This has a lot of legal, financial, and logistical implications. I won’t get into hospital visitation rights, adoption, travel, or taxes right now. And there’s still a lot of work to do to gain housing rights, end LGBT youth homelessness, end employment discrimination, etc. You can see a good partial list here. So yes, next week we need to continue to fight, but right now we need to celebrate!

I spent the morning on Facebook. I hated to be alone – I just wanted to hug someone! I was bouncing up and down in 11535803_10152997661181169_4394317502946977616_nmy chair, crying and laughing at the same time. I’d stop crying, then read something like “Love wins!” and start crying tears of joy all over again. We finally had marriage equality!

This wasn’t quite a surprise. I knew this ruling was coming. I was watching the SCOTUS blog, and was disappointed each day when they didn’t rule on this important case. I expected a win. But when it came, the emotions were shocking and overwhelming. I could hardly believe it! We won!

So there was no question I had to celebrate. A large group of organizations had gathered together to host a rally and a celebration on whatever evening the ruling was issued, so obviously it was going to be yesterday. But here’s the thing about adrenal problems: any stress is a problem. That includes good stress. As I told my dad a few weeks ago, winning the lottery right now could leave me bedridden. So while this was a fantastic day with glorious news, the emotional excitement of the morning at worn me out. I could feel the chest congestion, the difficulty breathing at times, the roughness in my throat. My body had started to rebel.

I debated. I debated a lot. I knew that going to the celebrations could have really bad results, but how could I not go? I was protesting at the State House here in Massachusetts in 2004 when the legislature tried to work around the Supreme Judicial Court’s ruling to make same-sex marriage legal in this state. I was there when they finally delivered the vote that would lead to the first marriages in May 2004. But in May 2004, I didn’t feel well enough to go to City Hall and see the first marriages taking place. I was there, though, in 2012 when we celebrated the SCOTUS ruling that invalidated DOMA, the Defense of Marriage Act. This meant that the federal government would recognized all same-sex marriages, an enormous victory! So even if your state didn’t recognize your marriage, the federal government would.

And here we were in 2015 and I wanted to celebrate. First things first, I sat on the tv with some knitting and a movie and I forced myself to relax. It was tough not to go online, but I knew I needed to calm my emotions. After I rested, I made a 6-27-2015 1-09-45 PMsimple plan: I would get takeout for dinner, then go to the first rally. I would skip the more boisterous celebrations. As much as I wanted to go to them, I knew it would be more than I could handle. And if at any point on the way to the rally it felt like too much, I would come home, because celebrating on my own, or on the phone with loved ones, or any other way, would be good enough. It wasn’t my first choice, but it was the right choice.

In the end, I made it to the rally. Where I once saw opponents holding truly hateful posters, I now saw waving rainbow flags. There was a huge rainbow flag on the gate to the State House! I almost cried all over again. I heard amazing speeches, saw the cheers, and felt fantastic, though tired. So I found a place to sit. I didn’t cheer out loud, only in my head, and I took it easy. It was a necessary compromise, and one that I don’t regret at all.

I can’t begin to explain how meaningful yesterday’s decision was to me. Everything I write here is woefully inadequate. But the energy yesterday was perfect. We all understood each other. Strangers hugged and cheered together. I hugged my friends, simply saying, “Can you believe it?” and “What a day!” and we all understood. No explanations were necessary.

And now, as I type this, there is a rainbow stripe at the top of my screen, because apparently WordPress is in on the celebration. My Facebook feed is filled with celebratory notes, excited words, memes, articles, videos. Profile pictures are rainbow-colored or bi-colored (I went with bi colors.) My straight friends and family are celebrating just as much as the queer ones. Just as it should be. Because yesterday, we all won. And in my own way, I got to celebrate that, despite my illness.

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!

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!

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!

No! I’m not using my health as an excuse!

June 8, 2015

Somehow I had a strange insight when I was a kid. Well, the insight wasn’t strange, but having it at such a young age is probably unusual. I realized that if I ever used my pain as an excuse to get out of doing something when it really wasn’t a problem, no one would ever trust me again.

Maybe that’s why I felt so defensive today when someone accused me of that.

Ok, I’ll be fair. She thought I was doing it in an honest way. We were talking about her upcoming move out of state, and I said that I’d love to try moving someplace for just 6 months. I’d store my things in my parents’ basement and rent a furnished apartment near the ocean in Maine for 6 months, just to see how I liked it. She loved the idea, and pushed me to consider it. I pointed out that I couldn’t even think about it until my health was better. She asked if I was using my health as an excuse because I was really just scared to try it.

So I went on the defensive. I don’t talk bluntly about my health problems, but I’d had a recent setback that she hadn’t known anything about, and I was in no mood to have anyone suggest that being away from my doctors for 6 months was a problem only in my own mind. I told her something that she probably hadn’t realized: that while none of my health problems are fatal, that’s because they’re not fatal with proper treatment. But without proper treatment, yes, they could kill me. Ok, I didn’t happen to mention that death would take years, maybe decades, but that’s beside the point, right? And in the meantime, things could get awfully bad.

I’ll admit, I’m more fearful than I used to be. I used to jump at chances. Now, I’m weary. But who can blame me? So yes, I don’t take as many chances as maybe I could, or should. But then again, I take a lot of small risks on a regular basis, so who’s to say what’s right?

As for moving away for 6 months, I know that’s a risk I shouldn’t take. I don’t have a single doubt in my mind. What if I’d been away a few weeks ago when things went bad? I wouldn’t have gotten my blood work done, which means I wouldn’t have known to adjust my thyroid meds. I was having horrible symptoms of adrenal insufficiency, but I didn’t realize it until my naturopath pointed it out. My pulse was low, but I hadn’t checked it. My blood pressure was so low that she couldn’t even hear it. She tried three times. A machine wouldn’t have been able to read it either, so I wouldn’t have known about that. And if I was in Maine, I wouldn’t have visited my naturopath and started on folate (which I should have done a while ago, to be honest.) I would have gotten worse and worse until I couldn’t properly care for myself. Eventually, my parents would have had to come get me and take me to their house. I would have been bedridden. Now, I’m already seeing a bit of recovery. If I hadn’t caught it early, recovery could have taken months or years. So I have no doubt.

Even so, it sucks to have my judgment questioned. I know it’s hard for health people to understand this. As I pointed out to my friend, we’re taught that when you get sick, you take medicine and then you’re better. But for some of us it doesn’t work that way. We take the medicine and we stay sick. Sometimes we get even sicker. If we’re lucky, we stabilize. That’s what happened to me, I stabilized. Then that went to hell. I’ll probably never be stable. I may never be able to move away from my doctors for 6 months. I’m ok with that. I just need my support network to be ok with it, too.

I understand your recovery restrictions better than you think

June 3, 2015

My neighbor down the hall had unexpected surgery last week. I told him that I’m glad to help with small things, but that of course, I’m disabled myself. He knows that. He has shoveled out my car for me and helped me lift heavy things a couple of times. But that’s all he’s seen of my limitations. So it’s not a big surprise that he doesn’t get it.

The other day he asked if I could walk down the street to the farmer’s market to get him some things. I had to explain that while I can walk down there most days, I wouldn’t be able to carry much back. That gave him pause. He had been focusing on his own lifting restrictions. He hadn’t realize that I had some of my own.

And it’s been like that as he’s explained each of his restrictions. He said he couldn’t walk down the street for several days. Well, often I can’t leave my apartment for days at a time. He said he can’t lift anything heavy for a while. I can’t lift anything heavy for the rest of my life. He can’t ride a bike for a while. I can’t ride a bike for the rest of my life. I didn’t give him my own comparable limitations because I don’t want him to feel that I’m belittling what he’s going through.

Still, it’s interesting that after being neighbors for almost 10 years, he has no idea what I live with. And how would he? We rarely say more than a few sentences to each other at a time. We’re friendly, but not friends. And to the outside world, I seem ok. Because on the days I’m not, no one sees me.

At this point, I’m trying to be clear: I can do X to help him but not Y. I don’t go into details and he hasn’t asked. But the next time he tries to explain how difficult a particular limitation is, I might just need to explain that I’ve had that particular limitation for many years, even decades. Then at least he won’t feel the need to explain.

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