Tired...4-7-09

Dear family and friends -

Hope you are all well and that spring is making its way to your various parts of the world. The sun is at least shining today in Chicago, though it hasn't gotten much warmer. But at least it's not snowing anymore. I'm sorry it's been so long since I have sent an update - work has been driving me crazy and I barely sit down at the computer for personal reasons these days. Or talk on the phone. Truthfully, things have just been a wee bit stressful and so I haven't gotten around to writing.

I guess the good news is that I have a job in this economy...and so I wanted to share a little about what it is I do, for those of you who I hadn't been in touch with much before my MS diagnosis. I am the Research Study Coordinator for the Multicenter AIDS Cohort Study (MACS), the longest-running cohort study of HIV/AIDS in the United States (and anywhere). I work at Howard Brown Health Center, which is the Midwest's largest LGBT health center, and one of the pilot sites for the MACS. We see 3 times more participants at HBHC than at the other Chicago sites at Northwestern University and the CORE Center (part of Cook County's medical system). Other cities that are part of the MACS are Baltimore, Los Angeles, and Pittsburgh. We are also partnered with a sister study, the Women's Interagency HIV Study (WIHS). The MACS has produced over a 1000 publications in peer-reviewed journals.

I supervise 2 research assistants and a research physician assistant, manage a $3 million budget, and coordinate the study visits of 260 participants twice a year. In addition to filtering participants through every aspect of their visits (bloodwork, physical exams, computer behavioral interviews, and one-on-one medical and neuropsychological interviews), I also get to do all the fun stuff that goes along with project management Being a boss is a new skill that I'm still working on, but I love the study itself.

I am a member of the Behavioral Working Group, a group of investigators studying, you guessed, the behavioral aspects of HIV risk within the MACS and the WIHS. I currently just started a substudy with an investigator from the University of Chicago designed to elicit ethnographic interviews about high-risk experiences and attitudes toward HIV. We had our first participant for that substudy today.

Additionally, I am trying to organize a Chicago 25th anniversary event for the MACS, because we just completed the 25th year of data collection. I am also on the committee planning the national 25th anniversary celebration in Washington D.C. in May. As you can imagine, all these things together keep me busy every second of every day.

In other news, I have decided to try keeping a blog where I can write updates more frequently and have to write less per message....I know reading a blog might be easier for some people but more difficult for others, though, so I am going to continue sending email updates as well. I will just mostly copy and paste these email messages into the blog, though, so no one misses out. The URL for the blog is http://katerkins.blogspot.com. Feel free to comment there or email - personally I like reading emails more than blogs but different people like different things!

Healthwise, I am doing ok. Not great but not terrible either. I have been on the new medication, Avonex, for one month now. What's nice is that it is only once a week, so I have been doing injections on Friday nights. It helps me in that I am missing less work, but it kind of messes up my weekend and I haven't been accomplishing much on the weekends yet. The bummer is that the needle is almost 2 inches long, because it's intramuscular and has to go all the way down to the muscle. I almost get sick to my stomach every time I look at it, but it's really psychological....

I'm at half a dose of the medication right now, but this coming Friday I will go up to the new full dose. I haven't been having the horrible skin reactions, so all the other injection sites from the sub-cutaneous medication I was on are starting to heal. Unfortunately the combination of side effects (mostly pain and fevers all week long) and being really stressed with work (end of one budget period and beginning of another) have made for a bummer of a situation. I have just been so very tired and in so much pain it has been very frustrating. On the plus side, I haven't had the nausea. So there's good and bad.

I have been so busy and not feeling well and so have been putting off getting my follow-up MRI...so I don't actually have a picture of what's going on with my brain and spinal cord at the moment. I noticed yesterday when I got really especially tired and worked until 9:30 p.m. that I was having a difficult time with speech - but I don't know if I did that before the MS or if it's the MS. I might not ever know.

When I get to the MRI and get results I will let everyone know....

That's far too long...should have just blogged....forgive me for being long-winded! I really need to try to update more frequently and with fewer paragraphs! Love and hugs and thank yous to everyone....Happy Easter!lots of love,Kate