Wow...it's been a long time since I have posted. I try not to go this long in between posts, but sometimes, I guess it will happen.
2017. A lot has happened in 2017. So much so, that I don't remember a lot of it. ha!
I have continued with my 10-11 day schedule with Soliris for aHUS.
I am now on Remicade infusions every 8 weeks for my Crohn's Disease.
I am going to post pics from this year to try to catch up!
We will be going to South Dakota for Christmas this year, to be with Ben's family. I am sure there will be a ton of pics when we get home!
Here we go!
February:
Here I am getting my Soliris infusions at home. I swear that getting these at home has been such a blessing for me.
April:
We attended two Rangers game! Always a fun time!
May:
In May, we went to Kentucky to see my Dad! (How do I not have any pics of me and my Dad??!?!). We went to Abe Lincoln's birth place, shown below.
We went to the Corvette museum in Bowling Green.
We hung out some with my Uncle Joe and Aunt Holly (no pics of this either. sheesh!)
We had dinner with some of our aHUS family, Lee and Daphne (who happen to live in the city that I am from, in KY)!
We went to Lexington, so that Ben could see the UK campus!
We went to Tennessee to see some of our cousins, Freddie and Wilma; Uncle Wardean (you guess it, no pics of this either). We went to the cemetery while there to visit Aunt Mable.
We had a great time on this trip! Can't wait to get back!
June:
In June, I started my Remicade treatments! I have to go to an infusion center for these. Thankfully they are only every 8 weeks.
Also, in June, I met with US Senator Ted Cruz's liaison at their Dallas headquarters to discuss aHUS, rare disease, and some of the changes that are happening in healthcare!
August:
We went to see Steven Tyler in concert at the Winstar in Oklahoma! Amazing show!
September:
In September, I was asked to join The atypical HUS Foundation as a Board of Directors!!! I accepted and then 2 weeks later, I flew to California to the Global Genes Summit!
October:
In October, I had surgery to have my port removed from my right side (due to many, many complications), and a new one placed on the left side!
Ben, Mom, and myself (no pic of the 3 of us! I suck at taking pics) attended an Alexion Luncheon in Dallas! Met so many great aHUS'ers!
My car died! However, we were able to revive her! WOOHOO! (it is so sad to see her on the wrecker :( )
In October, we also attended the Blue October concert at the new concert venue in Irving with some friends! Great show!
November:
In November, the weekend after Thanksgiving, Ben and I went to see Willie Nelson in concert at Winstar in Oklahoma! We went to gamble a little and see the show, to celebrate our 6th wedding anniversary a little early!
Great night and I am so glad that we went!
December:
The first weekend in December, I flew to Orlando for a board of directors meeting! From leaving DFW on Friday evening, to touching back down in DFW on Sunday, I was gone 46 hours!
We worked a lot in that time!
We also were able to sneak away for a little fun at EPCOT!
So, that is where we are thus far into 2017! I hope to be able to keep up with the blog better in 2018. There are lots of aHUS trips and advocacy planned for the new year.
Hope everyone has a very Merry Christmas!
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