“What’s your cerebellum?”

I have met quite a few interesting people since my diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.  And, to be honest, many of these “interesting” folks have been medical professionals.

I had blood drawn this week, and sometimes I mention to the staff my medical history (but only if it comes up in conversation).  The technician who drew my blood was new and I’d never seen her before.  We began to talk about my veins, whether I was hydrated (I was fasting), things like that.  I should have known things were going downhill fast when she began to push down hard on my arm.  I had to hold my tongue to not tell her a thing or two!

I know enough to tell them they need to use a butterfly needle, as I have deep veins and lots of scar tissue from the surgeries.  She didn’t like the fact that I told her that.  Then, as this continued I mentioned the brain tumors in my cerebellum and Lhermitte-duclos Disease she said, “What’s your cerebellum?”

I about lost my noodle.

I didn’t mention this to a restaurant worker, or a teacher, or a bus driver.  This conversation was with a person who works in the medical field.  Basic anatomy 101.  Kinda unnerving, to say the least.  Especially when I got home and saw my arm.




Just like riding a bicycle

These last few months I have had a nice break from medical appointments.  It’s been really nice, I must admit.

But as they say, when it rains it pours.

Not even counting oral surgery or losing my hubcap last month, I got slammed this week.  I got sick and I don’t mean a bit sick, I mean siiiiiiiiiiiiiiiiiick.  All week I needed to get my blood drawn for my endocrinologist appointment tomorrow morning; I was only able to crawl out of bed this morning to get that done today.  Also tomorrow morning, I have my oncology appointment.  After my blood draw appointment I had a thyroid ultrasound.  There was so much wailing and gnashing of teeth.  I could not stop coughing.  At all.  At one point during the exam the technician asked me, “How long have you been coughing like this?”  (Some of the medical people on my “team” don’t like me coughing too much since I the craniotomies.)

Thankfully, I powered through.  The doctor won’t have the report by tomorrow, but at least he can read the results online.  I best be ready because I feel a firestorm coming!

I would like to keep as much of my blood as I can, thank you!

What with all my surgeries these last few years, I am a bit partial to holding on to my blood.  I mean, I just am.  I realize that Cowden Syndrome comes with a lot of blood work (including managing my Vitamin D levels) and the other labs vary from time to time.  I have had to learn to be an empowered patient, or engaged patient, or electronic patient, basically any appropriate (medical) word beginning with “E” and in front of the word “patient” would be me.  🙂  I have to add that I still hate identifying myself as a patient though.

This morning I was due to get my levels of Vitamin D checked. I am still unclear why it has been so wonky since before diagnosis, but it has been quite tough to get it stabilized.  (At one point I was on 150,000 IU’s of Vitamin D a week!  #TrueStory.)  Before I knew about brain tumors or rare genetic disorders, I remember that my Vitamin D level was 28.  I have been forced to learn a whole lotta stuff these last few years I know it’s better to have a higher level (but my current endocrinologist doesn’t want the level TOO high because then I am at risk for kidney stones, or something.)  Anyway, it’s been a very fine line getting this Vitamin D level worked out.

About a month ago, thankfully one of my doctors checked my level and it was 34.   Before this test, I remember it was almost 50.  Why the change?  What the heck is going on?  Thankfully I got ahold of the endocrinologist and he told me to take 50,000 IU once a week and then get my blood checked a month later (which was this week).

I went to the laboratory this morning and joked with the front desk woman that I “only had 1 lab this morning”.  She said, “Oh yeah, I know, huh.”  (NOTE:  The hospital staff in Radiology and Laboratory know me by first name.)  I told her which lab I was having done this morning (VITAMIN FREAKING D!) and which doctor.  I thought she was clear.  I was clear.  Come to find out she was clear as mud.

When I went back with the phlebotomist she took 5 vials from the drawer.  I thought it was rather odd to have so many, and mentioned it to her kind of matter-of-fact.  She then mentioned, “Cortisol (something)”, and I told her:

Me:  We aren’t doing those labs today.

P:  Oh, you’re not doing labs for Dr. B?

Me:  NO. I TOLD the woman up front that the labs were for Dr. S and ONLY Vitamin D.

P:  Hmmm.  OK, right?  OK, we’ll cancel.

Me:  I EVEN joked with her that I only had 1 lab today!

So the point to my story is this:  People make mistakes, people are human.  I get that.  But I never knew how much I had to be on top of my game before this life with 2 Rare Diseases.  Before, I would have just let her take those 5 vials of blood and never would have been the wiser, never asked a further question about it.

Now?  I am all about asking all the questions I want and need to.  And, everyone else better just deal with it.