NIH Visit with a Ray

Well I made it to Bethesda, Maryland on Sunday, on the tiny ass airplanes!!

Our housing was a little messed up and so we had to be transfered to a different building off campus which then took me out of my confort zone so had a little anxiety about that but we got it all figured out! The off campus place is wonderful! Maybe even better the the Childern’s Inn at the NIH (National Institutes of Health).

Monday, was my first day of clinicals at the NIH building 10 which went fine for the most part. Except, security at the NIH west gates tried to tell me that my State Drivers license was not real and that I made a photocopy of it. Which we all know is not ture and that the DL is the temp one they issue you while  you wait for them to send the card one in the mail. I told my nurse about the issue and she had the NIH issue Ray and I both Extended Stay ID’s to use instead so we don’t have to go through that secrurity.

Monday was not the bussiest day. I only had appointments until 12pm. But we had to wait to get our vouchers and to get our IDs then after that we had to wait for the off campus shuttle to take us back to the Woodmout House so I could do dialysis and then get ready to go out exploring some of Bethesda downtown. Which was fun! It started raining on us! Those bitches in the sky running shit!! LOL Well anyways we were looking for a CVS to buy some crap we really didn’t need but yet did. Then we walked back and found Starbucks so we had to go there and get some queer starbucks and support Marriage Equality! BTW people Maryland is voting on Quetion 6 which asks the voters to decide if the state should let the Marriage Equality bill become law or repeal it! So remind you Maryland friends and family to vote yes on question 6!!

Tuesday or shall I say today was fine. I wouldn’t say great but fine. I woke up feeling sick today so that messed up my entire day. Jeez! Today I the bussiest day. I had to drop off my 24-hour pee bag and the women at the desk in outpatient floor 9 told me that I needed to take it down to the lab place instead so I went down there and they told me to go back up so I did. lol the woman was wrong like I told her. LOL. Next I had a little EKG and then I had dental but we had so much time to spare since we were actually early instead of being almost one and a half hours late because of the stupid security people. After all my moring appointments and lunch we had to go up for my eye clinic and there I met both of the other Cystinosis families that were at the NIH this time.

BTW EVERYONE, the NIH clinical trial for my EYE DROPS is COMPLETED!!! The NIH finally got FDA APPROVAL for the EYE DROPS!!  This is just wonderful because it means that I can now get my eye drops from a pharmacy here in the midwest now near where I live or from CVS like my Cystagon. So that was some very good news!

Well that is about it for Sunday-Tuesday/Today. Only other thing is I came back to the Woodmout House and ended up sleepying through most of the Presidental Debate and then go online to share this blog with you all. While on the other hand Ray was ablt to go and explore Washington, D.C. for his first time. I have seen almost everything in D.C. so I just decided it would be best for me to just try to rest some.

I will have another blog out tomorrow after I get back from Bethesda.


1 thought on “NIH Visit with a Ray

  1. I don’t believe that you are in any clinical trial.


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