About a month ago, one of the other girls on the Generation Hope website, Keri, posted a song by Kerrie Roberts called No Matter What. This is a very good song; Keri felt it must have been written for her. I then searched iTunes and found some more Kerrie Roberts songs. I found one that seemed to be written for me, called Keep Breathing. The words are so powerful. I like most of the songs that I have found by her, but this one in particular is so inspirational to me. Watch it here:
The lyrics of the song start out talking about how your life isn't what you think it should be. It then goes on to talk about not giving up or giving in, how we are not done yet. When I listen to this song, I feel like she is singing just to me. When I'm having a bad day I’ll listen to it over and over to boost myself back up. Sometimes I cry and sometimes I smile when I hear it.
So many PH patients are like me. We are working one day, then the next it all comes crashing down, barely giving us time to digest or understand what has just happened. It can be so devastating, no matter what degree of PH a person has. This song gives me that little nudge to say, “Okay, I feel yucky, but yes I can walk on the treadmill today, or do the grocery shopping.” These are just some of the little things that lots of people without PH do on a regular basis without having to worry about finding energy to do them.
There are things that we PH people can do to make us continue to feel worthy and less like we are a burden to our families. I went from working part-time to not at all. I felt so much like a burden to my family. The part-time income I used to get would have really helped to pay for bills, meds, etc. That was super hard, and I loved being a nurse. It's what I've wanted to do since I can remember. Also, I didn't think I was one of those ladies that was wired to be a stay-at-home mom. Now I have become so grateful, even on the hard days, to be able to spend all this time with my daughter and my wonderful husband. I hope that everyone in our situation has the same support that I have, even if it is not a husband. I would be lost without him.
Sadly, with PH we never really know how long we have left here on the earth. So like Kerrie sings in this song, we have to "hang on a little tighter, a little longer, we are not done yet." Most of us have families to live for, children to raise, cures to pursue for PH and other illnesses. So we will keep fighting, raising awareness and money for research, and we will be in studies. All so that maybe someone in the future will not have to go through all this, especially our children. We will go to pulmonary rehab and walk on treadmills, and take medicines that make us feel, at times, worse than the PH itself, because we want to "Keep breathing, believing , we are not done yet."