A little about us...

My name is Ryan and my wife's name is Amanda. We are just two people with a lot in common that fell in love. Just so happens that one of those commonalities is Cystic Fibrosis (CF). We are breaking all the rules with being together, but love knows no boundaries.

Amanda and I met a few years ago at a CF walk kick-off event. Who knew our path's would cross again.

I was going through a rough time in January 2012, and a friend of ours mentioned to Amanda that I might need someone to talk to. Being the caring person she was, she contacted me to talk. We had an instant connection. She had previously gone through what I was going through, and was there to lend an ear. We started talking more frequently and feelings started developing. When we saw each other, there was a feeling that we had never felt before, almost like in the movies, love at "first" sight. Our friendship was stronger than ever and with feelings developing stronger and stronger every day, we decided that we had to make a hard decision. Being that we both had CF we had to decide where this relationship was going, did we want to take it to the next level, or was it going to end at just being friends. After a little time we both decided we were ready to take it to the next level. There was no turning back. We were in love, and took our last first kiss.

Wednesday, January 30, 2013

cant keep it short and sweet


Going to try and keep this blog short and sweet. Another trip to Tyler down, hopefully only a couple more to go. I’ve been on antibiotics for 3 months straight now to treat the mycobacterium abscessus I cultured out January 2012. Went to the specialist 4 hours away to find out that I am doing well on my treatment. Still no return of the mycobacterium and also staph is gone. Of course I suspect when I get off the antibiotics the staph to come back, but hopefully keep the mycobacterium out. Not to mention Amanda is on IVs right now for an exacerbation. So neither of us are feeling great, but not too bad either.

Even though my appointment went well I was still having an issue. Sunday is my day to de-access my port and go a day without a needle. Well Monday night it was time to re-access my port so I could start my IV. While I was doing my IV I started itching. Since I have been on IV antibiotics I have developed a rash, which the dermatologist diagnosed as pityosporum folliculitis. This is a type of yeast that naturally grows on your skin and when you are on antibiotics it kills off the natural bacteria that keeps the yeast at bay, now that I have been on antibiotics for 3 months its caused this rash. Well I thought that the rash had gotten under the tegaderm and was causing me to itch by my port. So since I was going to Tyler I decided to de-access Monday night so I could show the dr. Tuesday. He told me I could try a yeast medicine to get rid of it, but I should still keep the dermatologist informed. When I got home Tuesday night, same thing happened but worse. Amanda accessed me and the itching was worse and I couldn’t stand it, I was tired, frustrated, and upset. I had to take the dressing off again and de-access. This morning when 8 o’clock came around I called the dermatologist. The dermatologist said I needed to keep the tegaderm dressing off until this rash healed around my port, but luckily it isn’t the same as the rest of my chest, it is dermatitis. Hopefully by the end of the week I will be healed and not itch anymore.

Now off to bed, haven’t been sleeping well. Hopefully Amanda and I start feeling better soon.
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