A minor pet peeve of mine…

So, today I was at the oncologist, and as per usual, I was visited by medical student first. (I am treated at a teaching hospital, so this is a regular occurrence) He was very nice, though he seemed a little nervous. We were talking about the issues I had back in March, and he was asking me about the tests that had been run while I was in the ER. As I told him about the tests (chest x-ray, EKG, CT [with contrast] of my chest, and belly etc), he just stared at me.

When I was finished he says “Wow…are you a nurse?”. Now, I’ve heard this more than once, and normally I let it slide. But for some reason it really irked me today. I told him that no, I’m not a nurse, I’m just not stupid.

I am tired of those in the medical profession assuming that the rest of us are completely ignorant. I’m tired of the look of awe I get when I tell the medical professional that I am NOT a nurse. I am tired of having to explain the fact that I am a relatively well educated, active participant in my treatment, and that I want to be a partner in my health care. These are things that shouldn’t have to be explained. I realize that not everyone is as passionate, or as assertive as I am with regard to their health care knowledge, but I have to presume that I’m not the only person like this out there. That being said, my suggestion to medical professionals is simple; Rather than implying how shocked you are that I know anything about my medical treatment, maybe just participate in the conversation? Don’t express how surprising it is to come across a patient who knows what she’s talking about. Just continue the appointment. I’m not there to get a pat on the back from some godly-doctor-in-training. I’m there to get advice, learn more, and go about my day.

OK…rant over. For now.

On the plus side, the appointment was otherwise pretty good. My platelets are holding steady around 630,000, while the norm is 150,000-450,000…when you consider I used to be around 1.5million, that 630k looks pretty darn good. All the rest of my numbers are looking good too. WBC, RBC, HGB, HCT all within range. On the lower side of normal, but fine. We are going to continue abstaining from the PegIntron for now. I’ll go for monthly CBCs until my next appointment in August, and if we notice that my platelets are getting close to 800,000 or above, we’ll start the PegIntron again. I’m definitely not looking forward to that, because it will mean starting from scratch with all the extremely unpleasant (that’s putting it mildly) side effects, but we’ll cross that bridge when we come to it.

As always, you are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina

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Living Well With MPNs!

So…I know I said my next blog was going to be about fatigue…Sorry, but it’s not going to happen. Not right now at least. Instead I’d like to discuss something about which I am really excited!

Last summer I was lucky enough to go to the Chicagoland Patient Support Group meeting. It was extremely informative, and I had a great time meeting so many other patients! It was a wonderful feeling being in a room full of people who understood how I felt, and who had experienced the same things as me. I am excited to say that this summer I will be attending another MPN event in Chicago.

The MPN Research Foundation and Patient Power are Hosting an event on June 7th.  Living Well with MPNs. The event will include review of the latest research, information on planning treatment, and one of the things I’m most excited about is the opportunity to meet other patients. Presenting at the event will be Dr. Brady Stein of Northwestern, and Dr. Alison Moliterno of Johns Hopkins.

I can’t wait for the event! I plan to try to video some of the event (if that is allowed, of course). I will also do a review/recap of the meeting  like I did last summer.

Are any of you going to be there? I hope so! I’d love to meet some more fellow-MPNers 🙂 Hope to see you there!

As always, you are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina