A Bend in the Road

I am so behind on posting about this change in my journey, so I will have to catch you up. I've been getting entyvio infustions now for a little over 2 years at UAMS in their infusion center. For the most part, it has been a great experience. They have some of the most compassionate nurses there. It didn't take me long at all to know who to request. I want to take a moment to talk about my experiences with a few of the top nurses before I tell you about this "bend in the road".

I will never forget the first nurse I had there. I will be honest, I don't remember her name or really even what she looked like. What I do remember is her heart. It was overflowing with compassion. As I write this I am thinking I may have written about her before, but that's okay. It is worth repeating.

I was there for my first of what would be many infusions, and I was pretty scared. I think that is normal. Here you are in a very vulnerable state in your life and you really are at the mercy of the medical profession. I was doing so much better with my UC with diet alone, so needing to start meds this strong was quiet a shock and a disappointment. And let's be honest, when your meds are administered through an IV it seems a little more serious than taking an OTC medication or even a prescription. So, I was overwhelmed and scared and sitting among some really sick people. Many were way more sick than I was. My dear friend, Julie, was with me. She had driven me because there would be benedryl premeds and those usually make me pretty sleepy. She was also there for moral support. She was my cheerleader so to speak. I have had a few of those over the years, and to say they are a blessing is an understatement. The friends who will go sit by your side while your IV slowly drips and remind you that it is all going to be okay are pretty amazing friends.

So, back to my nurse.... She saw the trepidation in my eyes and probably the tears as well if I am honest. She leaned over and handed me one single pearl. She talked about how a pearl is formed from really nothing into something beautiful. Did you know a pearl starts out as a foreign object that accidentally lodges itself in an oyster's body? To ease the irritant, the oyster will form a substance around this foreign object creating a beautiful pearl. That is pretty amazing. Now, imagine hearing that story while you are hooked up to an IV fighting a disease that is caused by your own body attacking itself. By spending a few extra minutes with me telling me this story and talking to me about God she planted a seed of hope in me. She gave me a bit of courage and strength in that very small moment of time.

She was just one of my great nurses from UAMS. A few of my other favorites who I had were Cassie, Shane and Vallan. They were all very professional and you could tell by watching that they loved what they did and they had a deep concern for their patients. I would almost panic when I had anyone else besides these nurses. They were the BEST!!! When I found out I would have to get my infusions somewhere else, it was the nurses that I knew I would miss. I trusted them. Could I now trust someone else?

The answer is yes, BUT not without hesitation and resistance. So, my insurance decides it is not going to pay for me to have the infusions in a hospital setting. Since I have had multiple infusions without any difficulties they said I need to have a nurse come to my home to administer the meds or go to a stand alone clinic. I was like WHAAAAT?!?!!? You are kidding me, right???? I have been going for 2 years now and I know exactly who I want to administering my infusion and I trust them and..... You get the point. I was nowhere near ready for this change!! It took a bit to wrap my mind around this, but once I did it all worked out pretty smoothly. Last month I went to their clinic and had my first infusion. (I had to go there the first time.) I had a room all to myself and a nice, large recliner. My room even had a huge window to look out. I had a wonderful nurse who took great care of me. Overall, it was a great experience, and I can honestly say I think this will work out for the best. So, if things work out as planned the nurse will be coming to my house in December for my next infusion. I think it will be great, sitting in my own recliner in my own home drinking my tea and letting the meds drip. I will let you guys know how it goes.

One more thing. I titled this post after a Helen Keller quote I saw years ago.

"A BEND IN THE ROAD ISN'T THE END OF THE ROAD..

UNLESS OU FAIL TO MAKE THE TURN."