March Worries

I’ve been in kind of a lull with the Nexvax trial. I’ve been doing self injections on Sundays and Thursday. I have been laying low and taking it easy. I haven’t been out with friends much, not eating out, or pushing myself too hard because of this trial. I haven’t had many side effects. Occasionally something will get me, but for the most part it has been pretty easy.

This week I go back to Nashville on Thursday for an injection there and blood work. A week later, the real fun begins. Food challenges. They are already on my mind. Food challenges have been the real part I’ve been dreading.

There are 3 challenges – one will be gluten, one will be placebo, and one will be either gluten or placebo. There is also lots of blood drawn on these days too. The challenges come two weeks apart. Once these six weeks or so are over, I should know for sure if I got the Nexvax and if it worked. We can compare my initial gluten challenge at the start of the trial to the gluten challenge after all of these injections and we should know.

On top of all of this, I have a relative that lives in California that has had a stroke. I am going out to California to help her recover and offer support for her husband. They are older and have no idea what will be required in order to keep me safe from getting glutened. I am going the first week of March. I will have to grocery shop, buy a new pan, and in general start over from fresh in their kitchen in addition to helping my relative recover from a stroke.

As I’m flying cross country, the airline does not offer any special meals on the flight. I will be carrying a cooler for my auto injectors, so I guess I get to throw some food in there too.

All of this while my husband has an incredibly difficult March coming up with his work too.

March 2019 is going to be memorable. I was going to say challenging, but that doesn’t do it justice. I will be going through a lot. My family will be going through a lot. We will get through it and hopefully be better on the other side. I hope this drug works. I hope my relative can recover fully from her stroke. I hope my husband has a great month at work. There’s lots of hope for the month of March. Yes, its gonna be hard but hopefully at the end of the month things will be a lot better.

Furthermore, I’m lucky because, I have friends and family to rally around to help. We have enough resources that we can keep all of these balls in the air. And I’m healthy enough to manage without too many setbacks. I’ve got the support of this community we’ve created. I’m grateful that you all are on this journey with me and I hope I can bring some hope into your lives.

I will keep you all in the loop as to how things are going! And wish me luck as we press forward.

Here’s to March!

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