Four years later

July 21, 2015

My physical therapist asked “How does that feel?” It took me a moment to answer, because I had to first block out of my mind the pain in my right wrist, in three toes on my left foot, in four toes on my right foot, and in my left knee. Finally, I had a sense of how my neck felt.

I started this blog 4 years ago today. It was very different then, in so many ways. I was very different.

Back then, I was amazed if 1 or 2 people read my blog each day. Today, I get at least 20-30 readers per day, sometimes over a hundred in a day, plus over 200 who get the blog emailed to them and more who read it in Feedly and other

Where readers have come from in recent months

Where readers have come from in recent months

readers. This blog has had about 33,800 page views…. That’s not much compared to some blogs, but I’m very happy with it. After all, the goal was never to win any popularity contests, but to have a small community. I have a bunch of twitter followers, too. For the first few months I blogged every single day. I still don’t know how I managed that. Now I average 2 posts each week and that feels about right, but I never pressure myself to write and I never worry about keeping any kind of schedule. Best of all, I have an active audience who often comment on what I write and on each other’s comments; that’s what I wanted from the beginning.

And then there’s me. Four years ago today I was working at a job I didn’t particularly like, going in at 9, leaving at 5, and barely surviving it. Every morning I struggled to get ready for working, have to lie down and rest for 20 minutes after my shower just so I’d have the energy to put on clothes. I came home every evening and did nothing but watch tv, eat, and write one blog post. Gone were the days of socializing after work. I started to make mistakes at work. I was always exhausted and I didn’t know why. I was in more pain than ever. I only felt decent when I was on Prednisone, but when I went off that, the fatigue and pain returned full force. So did the gastrointestinal symptoms that had gotten somewhat better while I was on the drug. I had no answers, and my doctors didn’t know what was causing my symptoms or how to help.

Now I have some answers, though probably not all of them. I have taken charge of my life. I no longer turn to doctors for all the answers; I do my own research. I still deal with fatigue and pain, but my gastrointestinal symptoms are almost entirely gone. I understand the workings of my body much better than I did before. I’m not working, or even trying to work, and that takes away so much pressure and stress. On the other hand, it also leads to less financial security, and that does have me worried. I no longer travel, but I have learned to be happy and content where I am. In fact, that’s the biggest change: despite all of my health problems and the other areas of my life they have affected (money, dating, travel, and so much more,) for the first time, I feel good about who I am and about where I am in my life. I am happy and content in a way that I never was before. I take time for introspection more than I did 4 years ago and I have learned more about myself through this long process than I ever would have expected.

If you’ve followed this blog for a while, you’ve watched me struggle to figure out which foods I couldn’t eat, to start a gluten-free diet, to deal with insensitive jerks, to find new doctors, to beg for tests, to cajole for new medications, to deal with dating, to find ways to tell friends and relatives and acquaintances and strangers about my health. You’ve read my political opinions, my frustration, my anger, my joy, my views on so many topics, and my issues with everything from sex to diarrhea. It’s been an interesting journey and I’ve been so grateful to have you here with me as I take it. It’s been rough, too. Still, I see some overall improvement. I get frustrated a lot of the time that the improvement is so slow, and that for every 3 steps forward, I end up taking 2 steps back. Still, I’m grateful for any improvement I can get.

So I’m looking back over these past 4 years and it makes me wonder: where will I be another 4 years from now? Only time will tell, but I’ll do my best to head in a healthy, safe, positive direction.

What about you? How has your situation changed over the past 4 years, 4 months, 4 weeks, or any other time period you want to think about? Are you trying to change direction? Or are you able to forget about the past and be present only in the moment? (I’m still working on that myself.) How are you doing?

4 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Job, Limitations, Milestones, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

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!

4 Comments | Expectations, Frustration, Isolation, Rants, Symptoms | Tagged: , , , | Permalink
Posted by chronicrants

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.

2 Comments | Fatigue, Frustration, Isolation, Limitations, Medication, Rants, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

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
Posted by chronicrants

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