A little support goes a long way

July 24, 2015

I was having a tough day. I was exhausted, fatigued, and in a lot of pain. It all felt overwhelming. I was supposed to spend the night at my parents’ house, but just the idea of driving down to them felt like too much. With my mother’s encouragement, I went anyway. She knew I’d feel better when I arrived, and I was pretty sure she was right.IMG_20150724_195633

I rested for a while and finally got in the car with my things. I hit far too much traffic for 3pm on a Thursday, but after nearly two hours, I arrived at my destination – it took double the time it should have.

As soon as I walked in the door I got a big hug from my mother, a smile from my father, and warm greetings from two wonderful pooches. It shouldn’t have mattered. It shouldn’t have made me feel better. And yet, somehow, it made all the difference. After some cuddling with the guy above, I felt so much better. Some good homemade food, nice conversation, and tv rounded out the day and before I knew it, I was asleep on the futon with this cutie pie stretched out alongside me. There’s just something about cuddling with a dog that makes me sleep so much better.

The pooch has been great medicine, but my parents have been, too. The simple things help more than they know. Helping me to carry things, fetching things for me, and just generally trying to help me feel good showed me how much they care. They made me feel cared for. And that’s why now, just 27 hours later, I’m still in pain, but I’m less fatigued and my soul feels refreshed. I’ll spend an extra night here because I know that no matter how I feel, my parents will always do their best to help me feel better. So thanks Mom and Dad! You’re the best!


Will I get dressed today?

July 18, 2015

Back in the old days, I would get dressed every weekday around 7 or 8am, and later on weekends. Occasionally I’d have a leisurely Saturday where I’d stay in pajamas all day. It was such a treat! I loved the luxury of it, but it was definitely rare.

2015-07-18 20.51.04

Today’s glamorous outfit, a.k.a. pajamas

Well, times have changed. Now I force myself to get dressed on all but my sickest days because I’m worried that not getting dressed one day will lead to not getting dressed more days and soon I won’t have the drive to do anything. I live alone, so if I don’t leave my apartment, then I don’t see anyone. And if I don’t leave my apartment, no one knows if I’m dressed or not. So staying in pajamas all day would be so easy. And that’s exactly why I know I shouldn’t do it.

The other day I found myself in my pajamas at 4pm. This was even later than usual. If I don’t have to be out of the house for a medical appointment in the morning, then I usually don’t get dressed until noon. I shower and get dressed right before lunch and I hate that I always do it so late. I try to get dressed earlier, but it never happens. But the other day I was more fatigued than usual and I just couldn’t push myself. So I watched the hours tick by and finally, by sheer willpower, I forced myself to shower and get dressed so I could go out. I didn’t want to go out, but I’d been looking forward to that party for ages, and I knew I’d have fun once I got my ass out the door. (And I did! It was so much fun!)

Today was different. Today I didn’t have to be anywhere. That’s why it took extra effort to finally, finally get dressed at 5pm. While most days I get dressed right before lunch, today I waited until right before dinner. The funny thing is, it was a more productive day than most. I didn’t spend all day on Facebook or watching tv. Instead, I cleaned out my desk drawers, going through dozens upon dozens of papers….. old handouts from presentations I’d attended over the years, financial notes, and so many health insurance letters all made their way to the recycling bin. It felt fantastic to purge all of that clutter! And yet, even with that drive and excitement, I was still in my pajamas at 5pm.

Tomorrow I’m meeting friends for lunch, so I’ll have to get my butt moving a bit earlier. I might even be dressed by 11am! Now, wouldn’t that be something?


When the nightmares are real

July 15, 2015

It was only recently that I realized my dreams might be something to worry about. I started to suspect there was a problem when I read about the recurring stress dreams that people with PTSD sometimes experience. Mine probably aren’t that severe, but they’re similar in nature. Then a friend with chronic illness was talking about his health-related anxiety dreams in a way that assumed everyone knew it was problematic to have them. Hmm. All the little pieces added up, and now I’m thinking my dreams might be a reason for concern.

When I was a kid I was scared of a substitute teacher. There was no real reason for it, there was just something about her that bothered me. I had a recurring dream that she was chasing me down my street. I think she was carrying fire, too. Until recently, that was the only recurring dream I ever had, and I hadn’t had it in 25+ years.

Now I have a recurring dream where I’m desperate to find a toilet, but I can’t find any. Then I finally find some in a public restroom, but they’re built too high up on the wall, and I can’t climb on to them. I finally find others, but there are no walls between the stalls, and no doors, so there’s no privacy, and that absolutely terrifies me. I’m feeling the diarrhea coming on, wondering if I’ll shit my pants, and trying desperately to climb onto a toilet that’s 3 or 4 feet off the ground.

Before I can resolve the dream one way or another, I wake up, my heart racing, terrified that I’m about to have diarrhea in my bed. I run top speed to the bathroom and…. nothing. That’s when I realize it was a dream.

Lately I’ve gotten better at returning to reality quickly, and I usually stop myself before I get all the way to the bathroom and I return to bed. But returning to reality also means acknowledging that there’s a lot of truth in these dreams. When I was a kid, that teacher would never have chased me through the neighborhood streets carrying fire, but now I could easily shit my pants. It’s happened before and it will probably happen again. The other symptoms I dream about are real, too.

For a while I had recurring dreams where I accidentally ate gluten, then had to wait in agony for the onset of symptoms that I knew would come at me. Waiting for the symptoms was horrifying. I’d wake up with my heart pounding, fear coursing through me, usually sweaty and anxious. Thankfully, those dreams disappeared around the time I got rid of the last remains of hidden gluten in my diet. But for some reason, I had that dream again twice recently. I can’t imagine why.

I have other health-related anxiety dreams, too. Some are about pain, some are about my diet, some are about other symptoms, some are about doctors and insurance companies. Sometimes I dream about pain and then wake up to discover I’m actually in pain. There was one time I dreamed someone was screaming, then woke up to discover that I was screaming because the pain was so bad. My own screams woke me up that night.

What does all of this mean? I don’t have the answer. I don’t need an answer right now, but what I’d love would be to know if others experience similar dreams.

Have you ever had a health-related anxiety dream? Does it happen often? What do you do about it? Does it concern you? Please comment below, anonymously if you prefer, and share your experience. I think that it helps us all to learn from each others’ experiences. Thanks!


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.