Tuesday, June 23, 2015

And We're Back!

Two steps forward, one step back...although it sometimes feels like a tiny step over the start line and turning and running backwards in the opposite direction...

But that's still a step over the start line!

My appointment last week with my mast cell specialist went well. While my GI doctor and PCP are great about following Dr. Afrin's protocols and corresponding with him as needed, it was still nice to be able to sit down with him in person. It was nice to be able to ask questions and hear about current research and new treatment possibilities that may be available in the near future. As you know, since we got the diagnosis, we've been trialing medications to hopefully find one that will best manage my symptoms. I started a new one about a week before our cruise to Alaska. Since then, we've noticed some small (or big depending on how you look at it!) changes in my daily functioning.

While the improvements are small, it's definitely a step in a positive direction. Dr. Afrin was very encouraged at the improvements I've seen even on the lowest dose of the medication. One of the biggest changes is that I'm EATING!!!

Okay, I'm not ready for Thanksgiving yet (good thing it's still 5 months away!) but we are making progress. I was able to eat a few scrambled eggs on the cruise along with a bit of fruit. I'm still eating a bit of scrambled eggs and fruit and have been able to add in some soft foods, like mashed sweet potatoes. Dr. Afrin thought even that small improvement was a good indication that this latest medication may be a good fit for me and we may be dealing with dose adjustments for a bit.

We are thankful.

Like I said, still just a small step. But at least it's something. Unfortunately, last night and today have been rough. While insomnia and fevers are not usually on my list of symptoms, my body has decided to switch things up a bit...never a dull day in Bokatopia!

As always, thank you for your prayers. It has been just over 4 weeks since I have been in the ER which is a new record! Please be praying for that streak to continue! Also, Nick and I have a couple fun trips planned in the coming weeks, a fun change from our typical "date nights" and doctor travels. Please be praying for health and safe travels while we are hoping to have a weekend away and some time with friends. 

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