Instead of posting a PHighter Friday story- I need to ask you for your help.
If you have Pulmonary Hypertension and have an inspiring story to share, please contact me at firstname.lastname@example.org. This blog cannot continue with the help of other people with PH who are willing to share their journey.
To share your story you do not need to be a long-term survivor (but I accept stories from long-term survivors as well!) You just need to share your PH journey that will help provide hope to others ( (especially the newly diagnosed, or a few years past diagnosis.)
Have you improved much greater than your doctors said you would? Have you survived and thrived much longer than the original time frame given to you by a doctor? Have you accomplished something you were originally told you would not be able to do with PH? Do you work full or part-time? Do you volunteer, run a support group? Have you adopted? Are you active? Do you walk for 30 minutes every night? Do you go to the gym? Are you not just surviving but thriving? Are you doing much better than the lousy internet statistics you originally Googled when you were diagnosed? Have you downgraded medication? Discontinued oxygen use? If you answered yes to any of these questions and are willing to share your story to help others, please e-mail me at email@example.com. From there, a brief e-mail with a list of topics will be sent your way to help with the creative process! If you know someone who would be a good candidate to write for a PHighter Friday, please feel free to send them my contact info. Remember, people of all abilities and from all walks of life are invited to share their story so long as it is inspiring.
For 2015 I hope to continue with more PHighter Friday stories. Right now I have some posts ready and waiting for the upcoming Fridays. They will be posted every Friday, or for every Friday that there is a story to share.
I will also be introducing a new category of posts called Partners with PH. The Partners with PH posts will be written from a spouse or partner who is in a relationship with someone who has Pulmonary Hypertension. The goal of this topic is to show that these partners aren't necessarily caregivers to their spouse. They help their partner with whatever they need, but that is how most loving relationships work! I also hope that this proves that these kinds of relationships can have a sense of normalcy, and to encourage other PHers to pursue relationships or continue relationships past diagnosis. I know that this is something I myself have felt guilty about. I have two posts so far, and I cried reading them. They were so sweet and inspiring, and I have always said that there is a pot for every lid. Don't let this disease stop you from finding your bliss, whatever that may be! If you are in a relationship with someone with Pulmonary Hypertension and would like to share your story, please contact me and I would be delighted to send you more information about writing a blog post!
Sometime in 2015, Charity Tilleman-Dick will be sharing her journey with Pulmonary Hypertension, which ultimately lead to two double lung transplants. Told she would never sing again, Charity has kept her career as an opera singer and has used her platform to spread awareness and hope! I have followed Charity since diagnosis, so I am really excited to learn more about Charity, and that we will get to share her story with readers! She actually reached out to me after diagnosis and sent me very kind words on a message board. Here is a video of Charity on TEDMED speaking of her experience.
TED Talk: Charity Tillemann-Dick: Singing after... by TED
I also hope to share more personal posts in 2015. A few people with PH thanked me for being so honest, and one newly diagnosed person thanked me for sharing what my first year past diagnosis has been like. I wasn't sure if anything I had to say was beneficial. Their feedback has really showed me that is important to share my journey so soon after diagnosis. It can be one heck of a roller coaster.
I have learned through this experience that I can still be very shy and reserved (something I thought I outgrew in high-school.) I have received some attention through this project, and at times it has been too much for me. But, I knew I wanted to start this project because it was so desperately needed, and I knew that I had the resources and training to take on such a task. It has been a little difficult to run this blog while returning to work part-time. I hope to return full-time in 2015. It turns out this blog is a job as well. Have you ever wondered how I found all of the stories for PHighter Fridays? I am rarely approached by others...I would say maybe one person has approached me throughout this process. Pulmonary Hypertension is also a fairly rare disease, so it is even harder to find people on my own to share their story.
So what does 2015 have in store for me? I have no idea, and that thought scares me. I hope I continue to improve, and surprise doctors by my improvements. I hope that this is "my year," because last year hurt like hell. I was really depressed the days leading up to New Year Years. I have made it one year past diagnosis, and it surely wasn't what I thought it be. My specialist is optimistic that I will get off the oxygen completely sometime shortly within the New Year, so I am hoping that happens soon as it will lift some of my burden. Despite how depressed I was thinking about the future, my New Years Eve was wonderful. My boyfriend, Spencer (pictured beside me,) cooked us a lovely low-sodium, gluten free dinner to meet my dietary needs. We stayed up and played card games and watched the countdown on TV. I think this was more our style anyways. Last New Years I was barely coherent, so I have certainly come a long way. He told me that this was his favorite New Years. I made a face- his favorite New Years? How? Things have been so hard so this part year! I thought about what he said, and he was right. It was my favorite New Years too. We went to our favorite cafe, he made an amazing and romantic dinner, we both made it to midnight, and well, I had a pretty good day. I didn't need to use my oxygen while at his house at all! It was a great New Years. As I mentioned before, I plan to live to 87 so I am hoping for many many more happy and healthy New Years. Maybe next year we can go out dancing.
I want to wish all my readers a happy and healthy 2015. Here is hoping that less invasive and more effective medication comes our way this year, and maybe even a cure!