30 Things About My Invisible Illness

I rarely ever do these question and answer things , but some of my favorite asthmatics are doing it and it’s for a good cause…. so what the heck.

1. The illness I live with is: asthma
2. I was diagnosed with it : at the age of 2
3. But I had symptoms since: birth in 1954
4. The biggest adjustment I’ve had to make is: learning to live WITH the disease.
5. Most people assume: because I’m able to walk marathons, that I’m totally healthy
6. The hardest part about mornings are: that they end too soon.
7. My favorite medical TV show is: I don’t watch medical TV shows.
8. A gadget I couldn’t live without is: my Mp3 player.
9. The hardest part about nights are: making it through them.
10. Each day I take 12 pills, 3 inhalers and 6 nebulizer treatments .
11. Regarding alternative treatments I: have tried just about everything.
12. If I had to choose between an invisible illness or visible I would choose: probably an invisible one.
13. Regarding working and career: I chose something I was very familiar with…..Respiratory Therapy.
14. People would be surprised to know: that I have interests other than asthma.
15. The hardest thing to accept about my new reality has been: I was born with this disease, so it’s always been part of my reality.
16. Something I never thought I could do with my illness that I did was: become the first person with severe lung disease ever to finish the Boston marathon.
17. The commercials about my illness: I think this one depicts it the best.
18. Something I really miss doing since I was diagnosed is: taking my breathing for granted.
19. It was really hard to have to give up: Ive never given up anything because of my asthma, Ive always found ways around it.
20. A new hobby I have taken up since my diagnosis is: Searching for a cure.
21. If I could have one day of feeling normal again I would: RUN a marathon and savor every moment of it.
22. My illness has taught me: that I’m a lot stronger than I thought.
23. Want to know a secret? One thing people say that gets under my skin is: I’m an inspiration
24. But I love it when people: tell me that Ive made a positive impact on their life.
25. My favorite motto, scripture, quote that gets me through tough times is: “life isn’t about how to survive the storm, But learning how to dance in the rain”
26. When someone is diagnosed I’d like to tell them:that they’re  not alone.
27. Something that has surprised me about living with an illness is: that I would meet so many interesting and kind people.
28. The nicest thing someone did for me when I wasn’t feeling well was: stayed by my side till the crisis was over.
29. I’m involved with Invisible Illness Week because: believe it or not, Ive been guilty myself on occasion of judging people by their outward appearance. Shame on me.
30. The fact that you read this list makes me feel: that you’re interested in my answers.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at invisibleillness.com

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10 Comments

  1. hey breathinsteven, saw you follow my blog now (wheexytux) so i came over to have a read of yours. Our asthma sounds quite similar. i am in awe of your achievements. its amazing. keep up the good work. WT x

    • Hi Olivia, Nice to meet ya. I only got a chance to read the first page of your blog, but it sounds like you'be been through a lot. Sorry you have to deal with this crappy disease.

      Did I read that you use a flutter valve and take lots of antibiotics? Ive been lucky in that I never get infections.

      It's amazing how many people in the UK have severe asthma ( or what you call brittle asthma).

      • Yeah i use a flutter to clear the rubbish in my lungs and im on ling term antibiotics. I take one for its anti inflametory properties and the other to try and keep infections at bay. I think there are quite a lot of people who say they have brittle asthma but there is a difficult asthma protocol you have to go through first and not many poeple have been through it. I think there is about 1500 brittle asthmatics but i may be wrong in the UK. But there is a difference between brittle as and severe asthma. there are alot more with severe asthma than brittle asthma.

        Hope your having a good day and keep walking.
        do you have email?

        • Hi Olvia, The words "brittle" and "severe" are used pretty loosely all over the world. The term "brittle asthma" was actually coined by a British lung doctor several years ago as a pnenotype of severe asthma. He went on to further differentiate brittle asthma into subtypes A & B.
          In general though ,we look at brittle asthmatics as those having very "twitchy" airways, that tend to clamp up without much warning, as opposed to non brittle asthmatics whose airways are not as spastic.

          Here in the USA, they classify asthma in 4 categories; mild ( intermittent or persistent), moderate persistent ,and severe persistent . A small percentage of the severe persistent asthmatics are also classified as refractory asthmatics, meaning that they have symptoms all the time and respond poorly to treatment. I fall into that category.

          I'm sorry that you have to deal with all the infections. Taking all those antibiotics is very hard on your body.

          Take care of yourself and dont give up hope.!

          My email is breathinstephen@gmail.com

  2. Danielle says:

    Steve, I've always noticed that there seems to be more brittle asthma in the UK too.

    So, I learned from this (among other things) that you don't like to be called an inspiration. Please don't hate when I say that I had you in mind when I got my butt outta bed this morning to go wogging, ie ridiculously slow jogging. I just wanted to tell you that.

    It's a start and I enjoyed it!

    • kerri says:

      Danielle, I thought the same thing about the inspiration point (except for I didn't go "wogging"). Heck, if I see the word "marathon" I think "STEVE!" :D.

      Also, i've noticed that about brittle asthma being seemingly more prominent in the UK also (or it might be that people are more open about it?). However, I do think that the UK seems to have a much better asthma care/awareness system than we seem to over here in North America. Not saying our care isn't good, but they seem to have a much better protocol that is followed in dealing with asthma.

      Steve, I'll never call you an inspiration again (can't promise I won't think it though!) I will just have to replace the thought with "awesome" or "rocks". I hope that's okay :D.

  3. HHUUUGGGG TO YOU!!! Ok Steve … You know what kind of an infulence you've had on me … so I'm looking FORWARD to giving you your hug in person!!!! You've helped me more than you will ever know in an up-hill battle … and changed a couple other minds that were pretty fixed too! A runner saw me take my first pre-race preventative hit off my inhaler on Saturday saying "That's cheating, isn't it? No athlete does that." I smiled … exhaled and said "You don't know my buddy Steve … and Bruce Jenner is an asthmatic. I'd have to say he's an athlete. You tell these guys, ok?" I checked his number after … and he was soundly behind the two male racewalkers ahead of me. He saw me come in and said "I guess you are an athlete." I smiled again and said "I'm a minor leage asthmatic athlete."

    When are you arriving in San Jose?! There are going to be a small pack of us there …

    • Hi Lizzy, Don't worry, even if I'm too sick to do the actual race, I'll be there.

      Let me know what your schedule will be like on that weekend. I'll probably go to the Expo on that Friday. I plan to be at the starting line of the race at about 7am.

      Have a great week!

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Most frequently asked question

"Can you have an asthma attack with a normal sat reading"?
The answer is..YES!
While it's a little unusual to see a person with a perfect O2 sat of a 100% during a severe exacerbation, its pretty typical to see sats in the 94-97% range. The reason for this, is that asthma is a disease of the airways , not the alveoli where gas exchange takes place. Most asthmatics dont desaturate during the early stages of an attack,unless theres a secondary problem such as pneumonia. You have to be extremely ill with asthma if your sats are low.

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