Jennie's MS Journey

OK, this thing is getting VERY close now. I’m pretty much ready. I picked up the prescriptions I need to bring with me and the pharmacy sent the Neupogen shots. I’m supposed to carry those on the plane with me and they need to stay at a refrigerated temperature. I guess I will just get a little cooler to store them in. Mom is starting to get ready as she is coming with me week 1. I bet you a million dollars she is all packed long before I even start;).

I have a very full schedule the first few days. Northwestern has been contacting me almost daily updating me and making sure I am aware of any changes…etc. I appreciate that and it makes me feel I will be in good hands once I get there. After spending a year and half at UCSF, I see a clear difference in the quality of care, respect, response time, and professionalism at Northwestern.

Still no luck with loser insurance but we have changed companies during open enrollment and we will try again with United starting today to try and get some coverage. In the mean time, we are moving ahead because we don’t have time to wait especially being off medication.

When I met with the child counselor to see how best to handle all this with the kids, I was told that it is best to get your hair cut short first so they gradually can adjust to being all out shiny bald. Ok fine, so I sucked it up and got 10 inches cut off my hair this week. I would love to be one of those mod women that say how liberated it makes me feel but I would be lying. I feel like I reluctantly chopped 10 inches off of my hair, lol. I think it looks like an aged Dora the Explorer/little painter boy hybrid but the kids thought it was cute so I jumped on the bandwagon.

My girls currently share a cell phone to bring with them in emergencies in case they want to come home from where they are etc…but I think maybe the older two might need their own the next 3/4 months when I’m in Chicago and home recovering since so they can FaceTime or text me. I also like to think if they need to call home they can. So I still need to do that this week.

I have been receiving a lot of text messages from friends and it is so nice everyone is thinking about me. They have been asking if we want a meal train (when different people bring your family dinner at night). I think that is so kind and sweet of everyone but we really won’t be needing that, mom can make fast dinners for the kids and I just don’t like the idea of people spending time on that when we typically order or have prepared food anyway. Matt certainly did not marry me for my strengths in the kitchen!  I will however take every one of those prayers and good thoughts coming my way. I like the sounds of that.

So by Sunday, this will all be underway. I’m grateful this is happening earlier that originally thought and that Dr. Burt feels I will be able to halt this disease from progressing any further! It’s just a little stressful waiting to do it all. I’m better in the actual game than I am leading up to it!