Still Miles to Go

We’ve had a relatively busy week. We spent the last four days driving into Boston for various reasons. This is not usually the norm. I usually go in about 3 times a week to meet with tutees and go to various medical appointments; Keith goes in to Waltham 2-3 times a week. This week just happened to be “one of those weeks”…

Monday, I sent off an update (with Keith’s input) to my primary care doc. She read it and freaked out, called, and scheduled us in for the following afternoon. Now, Keith and I didn’t think too much of what’s been going on recently. We just figured it was normal progression (which it is) and we wrote it off as such, but my PCP isn’t too familiar with mito. So on Tuesday, we headed in. I had the air conditioning blasting on high and three ice packs on my body and got seriously overheated on the drive in. By the time we got there, I was bright red with a temp of 100 degrees (my “normal” temp runs about 96 degrees). I had vertigo and nausea. I did not look too pretty. Keith parked the car and took me into the Starbucks in our old apartment complex (just down the street from my doctor) to cool off with the a/c and some ice tea. I probably needed another hour in there to even feel slightly better, but I had to get to the appointment so we walked down the street. My face was still incredibly red when we got there so the nurses grabbed some instant cold packs and packed me down with them. Needless to say, my doctor was concerned.

While there we spoke about the recent issues: the resurgence of my multi-day migraines, the syncope (blacking out), my blood sugar levels, seizures, my fifth respiratory infection of 2010, and – of course – the temperature dysregulation. I have two new prescriptions and can now add endocrinology to my growing list of specialists. While there, she also expressed concern at my low blood pressure (80/50). I’m usually low, but this – apparently – is the lowest I’ve ever been in her office (I’ve been lower though). Usually, the stress of going to the doctor raises my blood pressure to a whopping 95/65, but I’ve never been above 115/70. She wants to run some blood tests on me when I’m off the prednisone (from the recent respiratory infection) to see if she can explain the blood pressure (other than, you know, mito). I was given 3 more instant cold packs for the 30 minute ride home and made the appointments for my neurologist (the dystonia specialist) and the endocrinologist.

Wednesday was Keith’s “day off” from Chelsea-sitting so he dropped me off with my good friend – and other other half – Stef. We set off almost immediately to pick up Auntie Weese from Beth Israel Hospital, which just happens to be across the street from my appointment the day prior. It ended up taking much longer than we had initially expected, but we had a good time sitting on Auntie’s bed and chatting with her and the roommate. I was wiped out by the time we left so I got a little nap on the way home. We spent the evening just chilling with Stef, Ralph, Linda, Bill, Weese, and the kiddos.

Thursday we were back on the road to see the immunologist. It was a rather routine visit, spent chatting about history of infection, allergies, and asthma. We made a plan and I was off to the lab to have 7 tubes of blood drawn. We especially wanted to check my immunoglobulin levels. Because I manage to get sick more frequently and more severely than the “normal” person (see: 5 URIs in 2010, 3 bouts of mono, yearly strep, etc.), we want to make sure that it’s not due to immunodeficiency. It’s likely just due to asthma and allergies raising my susceptibility to viruses, but it’s something we wanted to check on. After the appointment, Keith rewarded me with a trip to Target with Stef. We had a blast roaming the aisles with our matching chairs and service dogs and Keith got to educate multiple people on the topic of service dogs while we kept busy. I was able to pick up quite a few tutoring tools and a 5th birthday gift for Miss Sasha.

Today, we were back to Boston – surprise! – for a quick blood draw at MGH. I’m getting a muscle biopsy at the end of August to confirm which complexes are involved. As many of you know, I was approved for a fresh muscle biopsy at the end of June in Cleveland. Unfortunately, my body had other ideas and I was admitted after going into status. I had been told a week prior that my doctor wouldn’t sign off on travel due to the increasing frequency and severity of my seizures anyway. MGH does not do fresh muscle biopsies so we’re settling for a frozen. Cross your fingers that all goes well and I’m able to have the procedure done as planned this time.

After the visit to the “vampires,” I was off to meet my favorite tutee, whom I’ll refer to as “T.” We spent the whole afternoon at the Museum of Science. After heading to the mathematics room for about 20 minutes, we must’ve spent at least 90 minutes in the Electricity Theater. T spent a good 30 minutes of that playing with a computer programming system created at MIT called scratch. We had a blast playing with robots and computers. But I think Keith enjoyed himself the most; I swear that I need one of those kiddie leashes for him when we go out in public. He was laughing and playing like a child and T and I kept losing him. We finished off the day looking at the simple machines from The World Faire back in the 1920’s. It was great spending some “fun” study time with T as we’ve been spending much of our recent time doing book work to catch her up for school in the fall. Luckily, while at Target yesterday, I was able to pick up some fun tools to make that book work more engaging.

Keith and I are now safely back at home and resting. Rest is especially important tonight because tomorrow is our First Monthly Dose of Hope of the summer. This is a day where the local families affected by mito can come together for an afternoon of food, swimming, chatting, and hope. I’m really looking forward to meeting up with all of my friends once again. It’s a wonderful thing when you can get together with a group of people who understand on every level what you’re going through. And T is planning to come out with her step-dad. I’m sad that some of my pals won’t be able to make it this time, but mark your calendars for August 21st, because that is not only the next Monthly Dose of Hope, but also the kick-off party for the 2011 Energy for Life Walk!!!

I hope all are healthy, happy, and hopeful!