ME: Do you mind if I ask why you are on oxygen?
-This is the first time I have ever asked anyone this question, but for some reason I was compelled to do it. Anything medically related could be a personal subject for many people. I ask in this manner to give her the out if she doesn't want to discuss her situation. Luckily I work in a profession where people seem inclined to discuss things they would not even tell their therapist. That's right' I'm a hair stylist.
CUSTOMER: Oh I have this rare lung disease, you have probably never heard of it.
-No effing way right?!
ME: Oh really? What is it called?
-because that would just be to stinkin crazy right?!
CUSTOMER: It's called Pulmonary Hypertension.
ME: HEY! I have that too!
CUSTOMER: Speechless, I mean really... this lady is just looking at me like I'm crazy.
This was the first time I had ever met anyone outside of a support group with PH. At the time I was not really a fan of support groups, I mean I had gone to one or two, but everyone was over 50. Well everyone is still over 50, but now that I am getting older -almost 30, yikes- the age difference doesn't seem so crazy. I don't remember how I found out about PHA or all the support they offer. At my first appointment with my PH Specailist, Dr. Ralph my amazing nurse Stephanie gave me the PH guide book (what is this called?), so realistically I suppose that I knew about them right from the beginning. What a blessing that was.
After talking to this lovely older lady while I was giving her an amazing haircut, I realized that she did not know about all these resources. She did not know about PHA, and she was having a difficult time affording her medications. I was able to give her two vital pieces of information. The number for caring voice coalition, and the pulmonary hypertension website. I had the opportunity to see her twice more after that visit. I myself am a very shy person and while I love to chat with people, I have a hard time extending myself to people I don't know. I couldn't believe that this lady had the same super rare condition as me! I felt good that I was able to help her, but I also left the encounter feeling that I could have done more to help her.
Now I am a coleader and I have my own site dedicated to bringing hope and positivity to the PH community. Still though it is quite difficult to get the conversation started. I truly feel that my job gives me one of the best avenues to create awareness that there is available. I meet new people every week. Of course I don't tell everyone what I am going through, but if there is a spot in the conversation where it is appropriate then I make myself. If this is an unknown disease then let's make it known, and I never know when the world will get a little smaller and I will have the opportunity to make a difference in someone's life.
This is me at work.. You know doing one of the most crucial tasks of the morning!
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