Tag Archives: doctor

Doctor Today

I am actually really looking forward to going to the rheumatologist today. I woke up feeling awful. I feel weak, and my throat and lungs feel like they’re burning from all the coughing.

In my heart of hearts I hope I’ve just been unlucky enough to catch cold after cold these past two months. Let’s see!

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Back on the Grid

Geez. I was sick for a while. I spent two days in bed, and then went back to work Friday feeling like I’d risen from the dead. Then this weekend our daughter had a fever for most of Saturday, so it was like sickness just pervaded our house.

She had a rough few nights (which meant of course that we had a rough few nights…luckily my wonderful amazing husband always gets up when we first hear her cry, but the munchkin has been on a bit of a mommy kick, meaning I got up too to help settle her down…) So this morning I’m feeling pretty zonked out. She was up for about an  hour at 3 am and only wanted me to  hold her. It’s strange, I wanted so badly to go back to sleep, and yet I admit I loved the opportunity to hold my little baby girl, especially since she’s getting so big so fast.

Anyway, nothing a little (or a lot) of coffee can’t fix.

So I spoke with Dr. D on Wednesday when I was home sick, to see what he thought of me taking the Humira (he said to just wait until I felt better, which is what I did) and also to ask what he thought of my complement levels being down. Of the complement levels, he echoed Dr. Max and said it’s probably fine, and that I can wait until my next appointment check-in in six months.

Complement Levels Doooown (My Blood Test Results)

In a previous post I introduced the concept of complement levels, which I still don’t completely understand and haven’t yet much looked into. But Dr. Max told me that right now my C3 is low, 74. This is the complement level that was at 78 in June and 86 in August. My C4 is 27, which is normal.

Okay I just googled complement levels, and the most relevant information came from this site, which explained basically what Dr. Max already told me. I have Crohn’s and Lupus and my meds aren’t helping much yet. Bleh.

However, he did say that I shouldn’t be worried about this, that he thinks the Humira will kick in eventually and get the levels up. Hmm.

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.

Phew, Glad That’s Over

Okay, so I spoke at the conference and it turned out okay. I don’t know why I work myself up into such a frenzy.

It was actually a pretty interesting panel and I’m so glad I did it. It was with Allison of www.lemonadelife.com, Hannah of www.dorkabetic.com and Gilles of ACOR, and we were talking about how the health industry can support and/or learn from patients who blog. I can’t say that we reached everyone but there seemed to be enough head nodding to make me feel like we were making some sort of impression on the doctors, pharma marketers and agency people in the room.

Pediatric gastroenterologist Bryan Vartabedian was there, known as @Doctor_V on Twitter, and he had also presented earlier in the day (his topic was “what you need to know about doctors and social media”). What I loved about meeting him was the first thing he said to me: “so, do you have mouth ulcers?” I guess those are the sorts of conversations we can expect when we break down the walls.

My co-panelists are an amazing bunch. They’ve made it a priority to help make being a patient better. Whether for diabetes in Allison and Hannah’s case, or for cancer in Gil’s case, they make a difference because they’re making that effort, which helps people know they’re not alone. And Dr. V is also doing his part, possibly just as important, because he’s getting doctors to do the same thing.

So much has happened at this conference that it’s hard to summarize it all, especially since the crappy coffee has seemed to give me the shakes, making it a bit hard to type. But to be brief, one thing that has stuck with me is something Allison said yesterday, which is that when you blog, you are inviting more people to your team. I love that analogy. I feel that anyone reading this post or any of my blog is truly part of my team that helps make me feel well. As much as I’d hoped that my blog might help others, ultimately it’s a selfish endeavor – I know that I need support as well as an outlet, and this blog gives me that.

Sartre Was Right

Do you ever feel like you’re speaking a totally different language from someone you’re trying so desperately to communicate with? Excuse the dangling participle, I’m trying to make a point here.

I’m a pretty good communicator. I mean, at least I think I am. But sometimes when I go to the doctor it’s like I’m speaking gibberish. After my monumental wait at the PCP’s yesterday (see blog post below…and by the way, it was Jean-Paul Sartre, genius indeed…) I was brought into the waiting room for my doctor visit; things continued quickly downhill from there.

I was already cranky, I admit it. In addition to the things I was complaining about in my post, a rather strange and scary woman tried to talk to me in the waiting room a few times, and it really freaked me out. Apparently she’s the local eccentric and I was told by staff that they just ignore her – but it still scared me.

So. I was brought into the waiting room and told to undress and put on a gown. The conversation went more or less like this:

Her: So, take off all your clothes and put on this gown, and he’ll be in in a minute.

Me: Um – the doctor is a male? I thought I set up an appointment with a female.

Her: Nope.

Me: Um, okay – um, why do I have to take off my clothes?

Her: So he can examine you.

Me: Um, okay, can you tell me specifically what he’s going to do?

Her: You know, listen to your heart and stuff.

Me: He needs me to take off my clothes for that?

Her: [Getting increasingly annoyed], Yes.

Me: Do I have to?

You can see where this is going. The more nervous I get, the more annoyed she gets. So, she left and closed the door, and I sat down and cried. I did. Then I told myself I was overreacting, and read the book I had in my purse for 10 more minutes until the doctor arrived.

Does this sound like an overreaction? If you don’t know me, yes, I’m sure it does. Even those who do know me might think so. But, when I was a teenager I had a bad experience with a doctor, so I choose all my doctors very carefully.  I don’t have a problem with removing my clothes, or even with procedures. I have a problem with not knowing what is going to be done to me.

I’m not going to go into any more detail about my past experience or the one with this doctor, but what I will say is that all doctors need to know what’s going on before they enter the room. How is the patient greeted at the reception desk? (Yesterday, I was greeted by a medical technician who actually said to me, “sometimes I don’t know why I’m still working here.) The first person who greets the patient is still, to the patient, part of the care process, and needs to act like a professional. I know that this person gets access to my medical records, which I consider quite private, so how do I feel when that person is acting like a doofus?

And what about the waiting room? Sure, it should be clean. Old-as-sin magazines, okay. But are there people in the waiting room making others uncomfortable? Is there a separate area for contagious people?

The medical technician who brought me into the office didn’t introduce herself to me. I thought she was a nurse, which is why I was asking her so many questions. Her lack of knowledge negatively escalated the situation. If she had just told me she didn’t know the answer, we could have found someone else to help.

Finally, before a patient enters the doctor’s office, there’s a world of experience each has had that has brought them to this point. Some are coming to the doctor for the first time, and some are old hat. But most, I’d think, have some anxiety about the visit. If you choose to work in healthcare, you should CARE. Take care, be gentle, assume that the person standing before you needs to trust you with his or her life. That is no small thing.

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.