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Superhuman Strength

I’ve written before about some things I’ve done growing up, such as marching band playing a bass drum, midget football, 4 years of baseball, track and field, and years of rough-playing recess at school. A reader requested a topic today and I agree with her that it makes for a fine discussion.

Hollie said:

I’m a fellow CFer as you would say. I think your posts are great and I am so glad to know you don’t wallow in self pity like a lot of other people with CF do. I know growing up wasn’t the best. I went to one of the best CF clinics in the US it was at Chapel Hill, North Carolina. Funny thing is doctors told me and my brother who also has CF that we would NEVER be able to do any kind of sports and basically just drag us down. Well guess what, my brother played soccer, baseball, football, and wrestled. I ran cross country, cheerleaded for basketball, and played soccer. I think you should do a post that highlights what doctors or even what others say and how other people with CF deal with it. Personally I think it’d be pretty cool. I am now 22 years old and have a fiance and a beautiful 4 month old daughter, thank goodness she doesn’t have CF but others should know that just because they have CF not to let that stop them from doing something that they want to do.

Sounds like a good topic for our group, so let’s dive in. Since I’m writing, I’ll follow Hollie’s lead and start things rolling.

My childhood clinic was the Toledo Hospital with Dr. Vaughty and Dr. Reddy. Some others came and went, but they cared for me from about 9mo until my 16th birthday. I don’t recall them ever telling me I wouldn’t be able to do something. I do know they predicted my parent’s marriage would end early (from stories, and it still hasn’t after over 35 years), but if they ever said something about my abilities, it either wasn’t to me and didn’t get passed on to me or else I’ve deeply repressed it because I’m a stubborn son of a gun. In fact, Dr. Vaughty had a standing agreement with all of his patients that they could drive his Porche to prom. Not sure if he didn’t think we’d make it or if he’d kick off first, but I remember that.

Unfortunately, I had prom in Florida and drove a 1992 Dodge Caravan to prom… I should give him a call while we’re in Columbus and go for a joy ride around I-75.

So, let’s run down activities and accomplishments to give a big middle finger to CF and show the younger generation to not give up hope of having a normal life. Pick yourself up by your bootstraps, put on your big girl panties, and take your health by the horns.

Let’s see… I guess I named quite a few of my activities, so on to accomplishments. I graduated in the top 10% of my class of 300+ students and got a full-ride scholarship plus books to any state school. I lost that scholarship due to a lack of study discipline and cockiness. I found out at that point that if you’re not in college you can’t be covered on your parent’s insurance, so I did what any normal person would do: got a job with benefits. It was at a call center. After taking 15,000 calls over 9 months, I got bored and got a job at a software company with benefits. Hello, 9/11 and the dot.com bust, company closed. Got a job outdoors for 3 years and paid my individual insurance policy up until I got a desk job at a gov’t contractor with great benefits. Stayed there for 3 years until I hit a ceiling and went to work for an Internet start-up for 5 months and then started my own business back on Groundhog Day 2009. I’m back on an individual policy with Aetna, gladly paying over $600/mo for insurance for me, plus Beautiful’s much less individual policy with another provider.

I spend almost all of my energy on treatments, eating, and earning to stay ahead of expenses and taxes and saving up for a huge rainy day fund if a transplant is in my future before a cure is found. One day my life insurance purchased with my last job will run out of its transfer into an individual policy, and we will need to be self-insured at that point, else I will not have been a responsible husband.

We have gone through the foster care classes and have begin making major changes and preparations to bring in 2-3 young kids under 5yrs, which will take even more of my energy, but I’m sure that energy will come when it’s needed. We are looking very much forward to having something else to do that is a long-lasting benefit to someone in need who can’t help themselves.

I guess that is a quick run-through of how we got to where we are now looking at my side of things for a CFer view. No welfare, no SS disability – things that I feel strongly about avoiding because I am a producer and consumer, not a burden on society. I may have a pulmonary handicap that limits my activity level and forces me to wear a mask at times, but I am not disabled and do not see myself ever not working until we have reached retirement age and retirement income/savings.

The sky is the limit

Do NOT let a doctor tell you what won’t be able to do, within reason. Of course, there are limitations to what we can do: military rules prevent service, many things have physical tests that we can’t pass at the age of eligibility (NFL, astronaut, free diving, or climbing Mt. Everest).

What are your doctor stories and personal/professional accomplishments?

Comments

  1. I once told a doctor from Salt Lake City, UT that I was going to be a ‘Actress” when I grew up & he told me ‘Why would you do that?’ and then went on to say “Well, you can’t forget you have CF” It didn’t detour me from pursuing my dream. I had a different Doctor from SLC, UT tell me I (in a very lengthy statistics presentation) that I was not a candidate for a lung transplant and that I WOULD have Diabetes “IF” I got a transplant. I am glad he told me those things, cuz it just made me fight harder to prove him and his statistics wrong ๐Ÿ˜‰ Which I have!!

  2. sanden3366 says:

    What a GREAT Post!! I was diagnosed with Cf at age 15, I have had the same doctor since Dr. Wylam at Mayo Clinic Rochester MN. Since a little girl all i wanted to do was be a MOM. Those dreams were crushed at age 15. I am stubborn and when someone says i cant do something I will prove them wrong. At age 25 i became pregnant, naturally which rarely happens with Cf. My doctor was mad. ha At age 27 we are pregnant AGAIN!! This time my doctor straight up asked my husband and I if we were going to give the baby up or abort the pregnancy!?!? I sat there with my mouth open for a minute trying to process what the HELL he just asked me. I yelled no!!! I think at this time its time to find a new CF doctor/clinic. So my dreams have come true. Im a mommy that stays at home!!

  3. jerrymildred says:

    Looking forward to reading more amazing stories from you CFer friends, Jesse. I don’t remember that either Dr. Vaughty or Reddy said anything about limits for you. Personally, I just can’t see you becoming a sumo wrestler, but I’m proud of the way you always found something that was both fun and challenging to do and then threw yourself into it with abandon. When I saw you marching with that bass drum, my chest stuck out almost as far as the drum. ๐Ÿ˜‰

  4. chillcutt says:

    Great post. I played sports when I was younger like YMCA basketball. I never let CF stop me from doing what I wanted. I also go to the CF Center at UNC and I never remember a doctor telling me I couldn’t do something relating to sports activities. I am significantly older than Hollie and that might be the difference with the doctors. I applaud you in your success and also not demonizing other Cfer’s that have used SS Disability. You have made good decisions with your life and some of the Cfer’s that have made poor decisions end up on SS Disability. Some Cfer’s are just unlucky (such as catching certain bacterias that are hard to treat) and have no choice but to get on SS.

  5. KristiRalstonBowers says:

    Well Kaleb’s doc at 3 months told us horrible things and it has taken me years to recover. She spoke so much negativity to us about what he wouldn’t be able to do it was devastating. But….we have tried to think positive and follow the words of those great people in our lives, like you and Kaleb’s specialist who only push Kaleb to greatness!