Denise had asked me to write a blog about how the speech went last week. I am a little behind in getting this done as I also want to write another blog and am having a hard time getting something down on paper. Sometimes I can write just from my head and other times I have to write in on paper first. This other blog will be one I must write on paper first.
Anyway, I gave a speech at our local support group meeting on February 28th. Usually, we have someone representing a drug company at our meetings and until recently they would always supply the food… but budget cuts…. Anyway, in this case United Therapeutics which makes three of the nine medications to treat PH was present. The rep I had never met before. He was very nice and said he had been looking forward to meeting me as he had seen us in the video’s from Hawaii. He also told me that his best friend was Nicole’s former pediatrician (she went to that practice from 1999- 2011). He said he remembered three years ago getting a call from him about a patient and he knows that patient was Nicole.
The local Accredo nurse, who has trained Nicole and I in Tyvaso and Remodulin and is the one who recommended the new insertion device for Nicole, to try came by the support group meeting specifically to give Nicole and I flowers in honor of my speech. She couldn’t stay as her daughter didn’t have soccer practice and her husband was out of town and she couldn’t leave her by herself for long and she still had to drive to Tampa which is about 1 1/2 hour drive. I was greatly touched by this.
After announcements from the head support group leader and going around the room to introduce everybody, it was my turn to speak. I opened with trying to sell the few calendars that I had brought with me for Nicole’s medical expenses as well as t-shirts and buttons that we sell with proceeds going to our local support group for stamps, food, etc. I started my speech with talking about the medications used to treat PH. I basically just printed out the entries I wrote on Facebook about them during November of last year. I would look over at the drug rep and he would be nodding so at least I knew my facts were correct.
After I finished talking about this I read Nicole’s story which was the blog I posted here. Looking out into the audience I saw a couple of people with tears in their eyes. I tried as much as possible to throw humor in. I didn’t tell a lot of the story especially since her diagnosis. I am hoping that I will be able to speak again and finish. I closed with a little bit about congenital heart defects. I had wanted to look up the symptoms for them but I had forgotten. Overall I am happy with it.
After my speech. I sold all of the t-shirts (about five) that I had brought with me and the three calendars plus one more. The drug rep came up to me and gave me a hug and told me what a wonderful job I did on the medications. I was very happy to get this compliment from him and it made me feel very good as he is a pulmonist specialist. He gave me his card and told me if I ever needed anything to let him know. He planned to come to other meetings. A lot of people came up to me and said that I did a good job.
I DO NOT like public speaking and I remember about 23 years ago when I was at the community college trying to get a AA degree I had to give a report for a class. I remember I thought I was going to pass out and my hands were sweating and my knees were shaking. I had this same feeling when I spoke at my mom’s memorial service in 1998. From 2007 – 2011 I was on the board of the homeschool group which required me to speak and run a meeting one time during the year. I credit the homeschool group and one of the influential members for pushing me out of my shell when it comes to public speaking. When I spoke last week I didn’t have butterflies, my knees weren’t knocking, my hands weren’t sweating and I wasn’t terrified. I did get tongue-tied a lot and thoughts of “you are an idiot, you are going to blow this” would try to creep into my head. I would have probably added much more than I did if Nicole hadn’t been present.
A couple of days ago, Nicole’s PH specialist’s nurse called me to tell me that the hospital that they work out of was going to do some media publicity on PH patients and had asked her doctor who he wanted highlighted and he said, Nicole. The hospital will pitch the story(ies) to the media … print, local (news) and national (news) and see if it gets picked up. She wanted to know if I would be interested. It didn’t take me any thought to answer this with “yes”. If it gets the work out about a disease that most people have never heard of or gets one baby diagnosed with a congenital heart defect it is all worth it. I spoke with the media relations department yesterday for a good hour and told her our story. I am waiting on a consent form. I was having some issues and concerns about it when it comes to Nicole’s privacy but I was able to talk to Denise about it and this has really helped because I have a lot of control regarding this. I will keep you posted on this progress.
I was thinking yesterday while talking with the lady from media relations that I should print out all the speeches/articles that I have done about Nicole and her illness and put them in a binder. As the lady was asking me questions I thought that would be a nice reference to have. I think I will make this a project and try to start working on it.
- Update (caregiving.com)
- Anger and frustration… (caregiving.com)
- Continuing the transplant process (caregiving.com)
- The Good Phight: My Daughter’s Story, the path to diagnosis, treatments and acceptance (caregiving.com)
- Transplant Appointment (caregiving.com)