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.

Thursday, June 5, 2014

Excess Supplies?!?


So last night I was working on organizing our apartment and getting it ready for company to come into town. I decided to separate and organize all of our IV supplies. It took me close to an hour, but I got everything separated and into their own little bags.

In the picture there is the following from left to right and front to back: tubing extensions, end caps, syringes/needles, IV3000, dressing kits, chloraprep, biopatches, anchordry covers, alcohol pads, steri-strips, sharps containers, port needles, gloves, heparin, and saline.

I would hate to know what all those "extra" supllies cost. I'm sure the IV pharmacy got their monies worth by billing my insurance for all of it. I cant be too upset because if I ever go without insurance, I will have a lot of extra supplies that I wont have to pay for out of pocket.

This is not including all the extra meds we have in our kitchen, which also needs organizing. Needless to say, having CF means you should have an extra closet labled CF Pharmacy to store all of this crap!
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Monday, June 2, 2014

Still breathing...

So it's been over a year now. Long story short: after 8 1/2 months I developed peripheral neuropathy in my feet,  they took me off Zyvox after a lot of tests trying to figure out what caused the neuropathy and determined it was the culprit. They put me on inhaled Amikacin for the remaining 3 1/2 months.

At 11 months and a few days I was allowed to stop treatment. 3 days before Amanda and mine wedding day I was able to de-access my port and be free from antibiotics for mycobacteria.

Now a year from developing peripheral neuropathy I still have it. Uncomfortable,  tingling, numbness and painful sensations in both feet from the ball to the tip of my toes. I have no way to get relief and no idea if it will ever go away, but it was worth getting rid of the mycobacteria.

All of that and I'm still breathing,  God is good!

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