For the zillionth time yesterday a doctor said, “This (medical condition you have) is very rare, but, well, there it is.” Mast cell disease continues to be the gift that keeps on giving.
I guess I still don’t understand women.
This morning one of my doctors kept saying, “Is there anything else you’d like to ask me?”
After the third time she asked that question I thought, “I’ve seen this in the movies, I know what she’s really asking,” so I replied, “Do you want to come over and bake some cookies?”
Everything after that was a blur ... I think she said, “What?”, and then I think I said, “What??” ... now I don’t know if I need a new doctor or some cookie dough.
~ a Facebook post from July 15, 2014
You can tell sometimes when doctors have something they don’t want to tell you. One of my doctors is an older “manly man” kind of guy, and while we’ve had some interesting conversations, they’ve never been about clothes. But the last time I saw him he walked in and said, “That’s an interesting shirt. What does it say on it? Where did you get it?” The conversation felt weird, and then I realized he was stalling. Finally he said, “Well, the biopsy shows that you have cancer.”
So now, ever time I put that shirt on, like today, I think of that conversation.
I recently went through a period where my blood pressure (BP) went up to 150/100 and stayed there. My normal BP is ~115/70, so I monitored it for a few days, and when it stayed there I made an appointment with my primary care physician (PCP). I explained everything to her, how I eat almost exclusively organic foods that I prepare at home, and I exercise harder than I have since 2011. I told her that I started feeling a little sick about two weeks ago, and that I was now feeling worse. I suggested that I probably had an infection, because that had been a recurring problem before we knew about the mast cell disease, and I had also just had a surgery in December. To me there was no logical reason that my BP should be that high unless I’m having an infection or some sort of heart issue.
Nonetheless, without doing any tests, her recommendation was that I should increase my Lisinopril dosage from 20mg to 40mg — which is the max you can take, and also has potentially severe side effects. My response was along the lines of, “Okay, whatev,” and after I left her office I made an appointment to see a specialist. I felt like she was just medicating the effect, and had little interest in understanding the cause.
I was just reading a Seeking Alpha article about the pending healthcare deal between Berkshire-Hathaway, Amazon, and JPMorgan/Chase, and someone who added a comment referred to this image about the rising costs of healthcare in the United States, and how those costs correlate not to an increase in physicians, but to an increase in administrative overhead. (The image comes from this IBJ.com page.)
It seems like there still aren’t many women in computer programming, but twelve out of my last eighteen doctors have been women, so that’s cool.
In retrospect it’s humbling to see that doctors spent about half a million dollars over the last 5-7 years to figure out my illness. If more doctors knew about mast cell disease the total cost could have probably been 1/10th of that.
This makes me look forward to the day when doctors have better software, and are willing to use it. (Every time I watch an episode of House I think, “Use a computer!”)
When you have a rare genetic mutation (I prefer the term “posthuman”), doctors like to give you orange jugs.
If you need to find a doctor who specializes in mast cell activation disease, I currently know of two lists of mast cell disease doctors:
As I’ve learned in the last two months, most doctors don’t know what mastocytosis or mast cell activation disease is.
I learned that the hard way, with over fifteen ER visits in the last three years, and having seen not only my primary care physician (“I wouldn’t know what to test for”), two endocrinologists, an allergist, a hematologist, three gastrointestinal specialists (one with a focus on the liver), and others I can’t remember, in addition to all of the ER doctors.