Archives For Diseases

You’ve no doubt heard of Crohn’s disease, a chronic inflammatory disorder of the bowels.  My heart goes out to people with Crohn’s because it can be very debilitating and difficult to live with.

However, there’s another condition with a very similar name, and this is the one I want to talk about today.  It’s not easy to discuss, but I need to face my fears and tell my story.

My friends, I suffer from Crone’s disease.  I don’t have full-blown Crone’s yet, but it’s just a matter of time.

Medical literature on the subject is scant; patients generally present with very vague signs and symptoms.  Because there are no tests for Crone’s, proper diagnosis can be made only when the disease is already advanced.

I vividly remember when I noticed the first symptom.  I was at a bar and the music was really loud.  Probably no louder than the music at other bars I had been to, but on this night the volume really bothered me.  I was seized by the overwhelming urge to tell the bartender to “turn down that fucking noise.”  This was accompanied by a strong desire to reflect loudly and at length on how much better the music was when I was in high school and college and how “bands today all sound the same.”

I had never experienced anything like that before.  It scared me.

Several years later, another alarming symptom reared its ugly head.  I was out with some friends.  We had a great time carousing but after so much debauchery I needed to call it a night.  I looked at my watch.  It was 11pm.  That can’t be right, I thought.  It’s got to be around 4am.  My watch must have stopped.  How could this be, that after only a few hours I was tired and wanted to go home?

I didn’t know it then, but I was in the early stages of Crone’s.

Other symptoms emerged recently. Not long ago I used the phrase, “Kids today have NO IDEA.”  I sometimes mutter under my breath at loud groups of young’uns in their 20s and 30s.  And when people discuss celebrities, I frequently have no clue who they’re talking about.  Blake Lively?  Who’s he?

I babble about how U2 was really great “back in the day.”  I bemoan the fact that people born in the 80s and 90s are co-opting The Breakfast Club and calling it a movie for their generation.  Yeah, well, I’ve got news for you, you little punks:  you can’t possibly know what it was really like back then.  I was there, bitches.  So why don’t you just run along and play with your Xbox or something?

Doctors don’t talk about prognosis when it comes to people with Crone’s.  But I’m not stupid.  I know what’s in store for me.

“Get off my lawn, you rotten kids!”

I’ll start saying “I’m too old for this shit” more often.  My joints will make odd cracking noises, like an old house settling.  It will take me ten minutes to get up after sitting on the floor.  Certain foods will no longer agree with me but I’ll insist on eating them anyway and complaining when my stomach hurts and I can’t sleep.  My glasses will crap out and I’ll be forced to read stuff by holding it either really far away or right in front of my eyes.

I won’t even get into the visible manifestations of Crone’s disease because they’re too numerous and horrifying.  But I will say this: grey hair is associated with an increased risk of Crone’s.  As you know, I already have a touch of hag.  My future is grim.  Eventually I’ll have to accept my fate.

For those of you who think you might have Crone’s, please know you’re not alone.  You shouldn’t suffer in silence.  Instead, you should bitch and moan to anyone who will stand still long enough to listen.  It’s the only way.

It’s hot out there today.  Although to be fair, it’s actually cool and refreshing here in NYC compared to what’s going on in other parts of North America.  Some of our Canadian homeys are sweltering in 40+ degrees Celsius (that’s 104+ degrees Fahrenheit for my fellow Celsius-challenged Americans).

In any case, when the mercury rises, so does my cranky level.  And my lazy level.  So it’s time for another reblog.  And what better subject to discuss on a hot, icky day than disease?  Enjoy!

Which diseases were the most glamorous?

 

It’s 4:30am and I can’t sleep. I woke up about an hour ago and have been up ever since. I didn’t get home from work until 10pm last night so I’d really prefer being asleep right now. But I’m taking advantage of the opportunity to have some quality time with the Weeblettes, one of whom is trying to climb on my lap even though my laptop is already on my lap.

So here’s a blog entry from a few months ago. Because you never know when this travel advice will come in handy.

Packing for a trip through time

Also, there is nothing good on television at 4:30-5:00am. I guess the networks feel that if you’re awake at this time, you deserve crappy programming. Unless this is their way of trying to be helpful, airing stuff that would be more likely to put you to sleep. Either way, sucks.

You know how sometimes a bunch of things happen at once, and it kinda/sorta of gives you the idea that someone/Someone is trying to tell you something?

I’m having that kind of day. Two things happened this morning that made me cry, in a good way. They reminded me of things I had put on the back burner. And I think it means it’s time to take them off the back burner.

Last night I saw a dear friend of mine, and I did some reiki on her because she’s having a bit of a tough time right now. My intention was for her to gain some clarity and peace of mind regarding her situation. This morning she sent me a beautiful email to tell me that I helped her to see her situation more clearly and that now she feels able to forgive herself. I practically sobbed when I read this. It’s extremely humbling to know that I was able to help, and I feel so happy that I had the opportunity to do this for a friend.

About 10 minutes after receiving this amazing email, one of my colleagues came into my office. She and I have had several conversations about medical care—she’s caring for her elderly father—and about how much unmet need there is for patients and caregivers when dealing with the medical community. She told me that when my name has come up in conversation with others in our industry, one of the things frequently mentioned is that I fight for the people I work with and I make sure they don’t get overlooked. And then she asked me if I had ever considered working with patients.

I felt like I had been clobbered with a Cosmic Sledgehammer.

Since I became a Reiki Master I’ve become much more aware of the different ways I can help people. I can’t prescribe medication or perform surgery, but I can help people endure their treatment or surgery better. I can help people gain clarity on things that are bothering them. I can help empower them to get through really difficult times. Doing reiki has really opened me up to understanding how much is out there.

I’ve toyed many times with the idea of doing patient advocacy, because I know how helpless people can feel. Doctors can be intimidating, and unfortunately quite a few of them don’t really listen to patients very well. And that’s just for your average doctor visit. When you need to go to the hospital, it’s very easy to get overwhelmed. Mountains of paperwork, hospital staff who ask you the same questions over and over again, and quite often, no clear, direct communication about what’s happening. So patients and their families end up feeling like cogs in the machine, and the result is that they don’t get what they need. If they’re lucky, the experience is merely horrifically stressful. But in worse scenarios, people get the wrong treatment—or no treatment—because there’s nobody to stick up for them.

Over the past several years I’ve accompanied several friends and family members to doctor’s appointments, and I’ve spoken to veterinarians on behalf of friends whose pets were ill. I’ve been stunned by the lack of genuine interest and/or integrity shown by some of them. Too often, doctors will just say “There’s nothing wrong with your blood work” or “Your x-rays are fine,” and then dismiss the patient’s concern as unimportant or medically irrelevant. It infuriates me that they don’t explore other options. I would have more a lot more respect for a physician who said, “Your blood work looks fine, so I don’t know what the problem might be. Why don’t we look at [fill in the blank] as a possible cause.”

I want to grab these guys by their white coat lapels and yell, “Just admit that you don’t know, for crying out loud!” Don’t imply that because you don’t know the cause, the problem must not really exist. Maybe the problem is that you’re seeing 50 patients a day, so that gives you only 10 minutes with each patient. Maybe the problem is that you think your patient is a hypochondriac. Maybe the problem is that you’re phoning it in and you don’t really care all that much.

The point of all this rambling is that too often there’s no care in healthcare. Patients often get shortchanged in one way or another. And it pisses me off. I want to help—whether it’s through energy healing, or advocating for patients who don’t know where to turn, or a combination of those two things, or something else completely. It’s time for me to move these thoughts to the front burner. Otherwise the Universe is going to whack me over the head again.

Yes, yes, I know. Disease isn’t glamorous. You know that, and I know that. But tell that to the people in other centuries. Even though most diseases were regarded in history much the way they are today, some ailments had cachet.

So which ones could theoretically allow the sufferer to convalesce attractively in a day bed?

Gout. A very painful type of acute arthritis brought on by excess consumption of rich foods and alcohol. Gout was called “the disease of kings” because it was something only wealthy people had—they were the only ones who could afford such delicacies. If you had gout, you were obviously a privileged person. And thus, glamorous.

Consumption. This was what they used to call tuberculosis—a deadly and deeply unpleasant disease. But how many stories, paintings, and operas have there been in which our heroine died from consumption? Plenty. In fact, consumption was called “the romantic disease.” That’s massively glamorous.

Melancholy. Better known as depression. Theories on its causes ranged from demonic possession to an excess of what was called “black bile” (which was thought to be produced by the spleen). Starting in the 16th century, melancholy was actually seen as a desirable thing because it marked the sufferer as especially sensitive and thoughtful, and often, more creative. Very glamorous indeed.

The Vapors.  Not technically a disease, more of a symptom. And curiously, the vapors were always suffered by women. Because, you know, the “fairer sex” was just more prone to dainty fits and fainting spells. Fever, fatigue, anxiety, and PMS, among other things, could all be ascribed to the vapors. The classic Victorian image of a woman with the vapors is one in which she’s swooning on a couch. How much more glamorous can you get?

On the flip side, men often used the vapors as a diagnosis for women who were headstrong, didn’t obey their husbands, or were somehow “too emotional.” Which is not just unglamorous, it’s also misogynist crap.