Tag Archives: diagnosis

June is Migraine Awareness Month

And I was just diagnosed with Migraine! Wow, I feel so hip, so now.

Whoops, it’s already July. Does that mean I’m going to be diagnosed with something else?

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Therapy Dogs

Great article in yesterday’s Wall Street Journal: http://online.wsj.com/article/SB10001424052748703886904576031521407391768.html?KEYWORDS=doctor%27s+dog

It’s about how therapy dogs can be helpful to psychiatrists. My mom’s training one of her dogs for therapy, and having grown up with dogs myself I know how healing they can be.

From the article:

“Research shows that a few minutes of stroking a pet dog decreases cortisol, the stress hormone, in both the human and the dog. It also increases prolactin and oxytocin, hormones that govern nurturing and security, as well as serotonin and norepinephrine, neurotransmitters that boost mood. One study found that five minutes with a dog was as relaxing as a 20-minute break for hospital staffers.”

An article in the same section discussed the top five health-related books of the year, one of which I’ve blogged about, The Decision Tree. The other that seems very interesting to me is “After the Diagnosis: Transcending Chronic Illness,” by Dr. Julian Seifter.

Lupus Nose

I remember when I was first diagnosed with Crohn’s, every time something weird was happening to me (dull headache, pain in my side, etc) I wondered if it was because of the Crohn’s. And I remember that confusion was paired with a bit of hopelessness, like, if this IS Crohn’s, well crap, I don’t know what to do about it. I didn’t know anyone with Crohn’s, my doctor’s appointments were whirlwinds, and there really weren’t any other resources for me.

I was starting to feel that same way about Lupus. Over the past few months, even before I was diagnosed, I had this strange …I guess you could call it symptom. My nose hurt. It just felt dry, like on the inside, not my sinuses really, but my nostrils. Weird, right? I couldn’t figure it out. In desperation I put bag balm on my nostrils (amazing stuff by the way…seems to fix just about everything) and it helped make me feel better until it finally went away. I mentioned it to my mom who said it was probably because of the dry weather, and I thought myself that maybe I was having some allergies, since it started around the spring/summer. But then it just kept coming back, and then I was diagnosed with Lupus, and it did say something on the list of Lupus symptoms about nose problems, and then I just sort of forgot about it for a bit.

Then last week it started up again, with a vengeance. My nose just hurt really bad. It was bleeding too. I was doing the bag balm thing. So finally I did what anyone in my position would do – I Googled it.  And I learned nothing. I mean seriously, nothing of value came up. So I went to Technorati.com and started looking for Lupus blogs, to see if I could reach out to others with Lupus. But then I started to doubt myself. I just have drug-induced Lupus. Is that really Lupus, or will they seem me as some sort of poser? And what if no one writes back to me? I started feeling pretty hopeless again.

But then – duh – I remembered about the multitude of chat groups. I went to HealingWell.org and posted my question. Within hours, four people wrote back. Unfortunately none of them had an answer for me in terms of how to make it better, but they were all experiencing the same thing, making me feel less alone in it all. Then I went to another site, Ravelry.com, which is actually a site for crafters, but they have chat groups for just about everything. I received several responses there too, but this time with ideas on what I can do about it. One person suggested anbesol, and another suggested Badger Balm.

Solved? Nope. But I know from Crohn’s that this is all just part of the process. It sucks. But what a different experience it’s been this time around. Rather than no resources, or just having to talk to my doctor, I have thousands of people out there just like me, just one computer away.

My Latest Dr. Max Visit

Okay, I feel like a jerk. Because I didn’t like Dr. Max in the beginning, and now he’s really growing on me. I think it’s easy to shoot the messenger, to not like the guy who tells you you’ve got Lupus and then orders a phlebodomist to stick you. Right?

I had a check-in with him today and it was more on the good news front. I’m doing well on the Humira and all my joint pain is gone. He explained the concept of complement levels, which rate your immune system activity. He said that normal is around 90-180 and I was at 78 back in June. My most recent blood test in August said I was up to 86. I had another blood test while at his office and will find out the results later this week.

As for the fatigue I’d been reporting, it’s possible I inadvertently figured out that mystery on my own. Someone mentioned to me quite randomly that this time of year people should take Vitamin D supplements, and that I should get tested for D deficiency if I’m feeling tired. I said to myself, forget that, I’ll just start taking the vitamin and see if I feel better. That was about 2 weeks ago, and from day one I noticed a strong difference. I no longer feel that horrible end-of-the-day slump where I wanted to just lie down and sleep, which led me to when I wrote about singing in the car.

I mentioned the D vitamins to Dr. Max (1,000 mg), and he said he’d check my D levels to see if I need a stronger dose, say 50,000 mg. He also said I may not need the sleep study. Nice! I’m still going to do the Zeo though. Today my ZQ was 67 due to our little nighttime adventure, but I seem to be averaging about 70.

e-Patient Connections 2010 – Elizabeth Cohen of CNN, Plus More on ePatientDave

You know how when something great happens you’re supposed to play it cool and accept it with grace? NOT ME! I think it’s so, so awesome that ePatientDave himself tweeted about my blog, check it out, I completely geeked out and pulled the screenshots off Twitter:

Because you know what? I think the real rock stars are the people who go through rough things and come out smiling…that makes me more starstruck around him than a literal rock star.

So, this is a good space for a reminder that I’m holding a contest for the rest of this week to win a copy of ePatientDave’s book, “Laugh, Sing, and Eat Like a Pig.” Just post a comment to any of my blog posts relating to the e-Patient conference, and you are automatically entered.

Speaking of books, I’d like to devote the rest of this post to Elizabeth Cohen of CNN, author of “The Empowered Patient.” She gave a fantastic presentation that related both to her own experiences and to those who she reports about.

My jaw dropped as she described her experience with her daughter, who was sickly when she was first born. At just a few days old, the hospital gave her daughter an unnecessary spinal tap, and was about to give another – Elizabeth tried to stop them, but was rebuked by the doctors and nurses. Listening to her, I was reminded of every nightmare I’ve ever had about being helpless in an emergency. She related this to the story of a woman who’d had her finger injured and was told there was nothing they could do for her, but she pushed and pushed and finally got someone to listen.

I think overall as patients that’s all we want. Empowerment, yes. But what does that mean? Quite plainly, we want someone to listen. Ultimately, it’s the doctor that can help us get better but the patient has to be part of the process. When a doctor listens, the patient can heal, body and soul.

Sherlock Holmes, Dr. House, and My Appendix

Just started reading Dr. Lisa Sanders’ book “Every Patient Tells a Story.” She writes the Diagnosis column for the NY Times, and also is a resource for the TV show House. I hadn’t seen the show, so after reading a few chapters this weekend I also watched a few episodes from season 1.

Sanders references Sherlock Holmes frequently in the book, because so many of these health issues are real mysteries. It’s interesting to think of it that way. And in the TV show, House often says that the patient lies. He doesn’t really mean that they lie, but really it’s that they don’t know the right thing to tell the doctor so that the doctor can find the cure.

It reminded me of when I had to get my appendix removed, about 8 years ago. I was working in my first job and had just had my first business trip, which was exciting but also pretty stressful. I’d also just been diagnosed with Crohn’s a few months before and was sort of getting used to the diagnosis even though I was feeling really good and was basically already in remission. My stomach was hurting really bad for hours, and so finally around 3 am I took a cab to the emergency room. The first thing I told the nurse was that I had Crohn’s disease, and in hindsight it was the worst thing I could have done. It was a busy ER, and even though I had every classic sign for appendicitis, they chalked up my symptoms to a Crohn’s flare and left me sitting there as they ushered everyone else through. Delirious with pain, I ended up calling my GI and begging him to come down to the ER and help me get admitted, which he did, and it was the only reason I was admitted – by then I’d waited 6 hours, and then after multiple tests to confirm appendicitis, I was put in surgery, a full 12 hours later.

It was a mystery, I guess, just how any other diagnosis story begins. However, the ER docs were terrible detectives because they didn’t pay attention to the clues. Yes, I had Crohn’s, but I also had every symptom for appendicitis. If they’d paid attention to that, I may not have suffered as long as I did.

Dr. Sanders’ book shows story after story just like that one. Strange symptoms and doctor’s assumptions send them down the wrong path again and again, sometimes resulting in harm and/or death. It all comes down to poor communication in a lot of ways.

Which is why this is the important thing – communication. Eye contact. The doctor spending time listening, talking, working to really figure out what’s going on. I am hoping that my doctors take a look at this book.