I Invite You to become a follower of this blog as we Take Awareness To a Whole New Level Together
Why do I have RunSickboyRun.com?
Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life. RSBR is a hub for comfort, information, advice, encouragement and understanding. It is a place where no question is ignored, no accomplishment is too small, no goal is too big, and every comment is cherished.
1. Remember your sweat test at age 3 1/2 . . . . something strange being on your forehead 2. Remember your first chest x-ray . . . cold table, green walls, crying 3. Remember your first enzymes . . . Viokase, three of them, in grape jelly on a spoon, mom and dad standing across the kitchen watching. 4. Chew enzymes instead of swallow them . . . never eat grape jelly again (can't even stand the smell of it . . .) 5. Quickly learn at age 3 1/2 that swallowing the pills is a much better idea 6. Only have to go to the CF doctor once a year in the 70s and 80s(can you believe it?) 7. Have your friends ask you why your thumbs look like cobras 8. Have your friends ask you if you smashed your thumbs with a hammer 9. Do bowl-a-thons, swim-a-thons for CF 10. Join the swim team even though your mom's not sure you can handle it 11. Win first place ribbons on swim team 12. Play soccer, make the varsity in high school 13. Watch your sister start having to go in for tune ups 14. Get pissed because everyone is always asking how your sister is doing . . . 15. What about me? I have CF, too . . .oh yeah, I'm the "lucky" one 16. Become fiercely independent . . . as much as I love my sister and we are great buddies, hate all the attention she gets, so decide to just be me. 17. Sob when cousin dies from CF at 14 in 1984 . . . first time really think about people dying from CF 18. Ask doctor if I should even go to college since I have CF and will probably die anyway 19. Praise God for having a doctor who when I was 16 told me YES, go to college as you have NO IDEA what the future holds 20. Go to college 500 miles from home 21. Watch "Alex, Life of a Child" with college friends . . . sobbing, explain to them that is the disease you have. 22. Vow never to read or watch "Alex, Life of a Child" again . . . because that was NOT me (and never do) 23. Interview for internship at national office of CFF 24. Do not get chosen for job in Washington, DC at CFF, instead intern at local CF chapter 25.. Graduate in 4 years, and take job working for college sorority 26. Praise God for not getting chosen to intern at national CFF when learn that CFers living in group apartments doing the internship started getting sick . . . (first emergence of cepacia and realization that CFers can pass bugs to each other in the late 1980s) 27. Hate sisters supposed friends for not including her while her disease was progressing when they were going out 28. Decide to go to law school 29. Spend summer living with sister in St. Louis while she's waiting for lung transplant 30. Decide her friends are not so bad after all because they come visit her and call while she's in St. Louis 31. Drive the 5 hour drive from Kansas City to St. Louis in 3 hours when sister gets call that lungs are available so dad I and I can join mom as surgery begins (thankfully we made it safely) 32. Meet future husband. Don't tell him about CF 33. Break up with future husband, get back together and tell him right away about CF 34. Learn that he already knew and had researched it and was okay with it 35. Get engaged, have mom panic that future husband really doesn't understand CF 36. In the course of 15 months from May 1993 to August 1994, graduate from law school, get engaged, move to Washington, DC to begin legal career, sister dies (too hard to balance lymphoma and rejection - no regrets, she had two great years), get married, find out pregnant with first child. (too many life changes in too short of time . . .) 37. Successfully have one, two then three healthy boys . . . and just live life 38. Realize that I've followed the "median age" as it has risen for most of my life . . . and actually surpassed it; decide to do clinical trials because if not me, then who? If I've made it this far, I must do my part to ensure others do, too 39. Vow to make it to 45, then 50, then 55, then 60, etc . . . one day at a time 40. Celebrate never having been in the hospital because of my CF 41. Celebrate never having iv antibiotics because of my CF 42. Vow to continue proving everyone wrong when it comes to expectations for those with CF 43. Toast myself on this Friday the 13th, the 43rd anniversary of my birth, that indeed, it is a lucky day for me . . .