I almost forgot who I am


I’m so much more than just the quirky little dude with bad lungs. I’m the original badass asthmatic. I made the words “fitness” and “lung disease” sound cool together. Im the first and only person with really severe asthma ever to finish the Boston marathon. Not once…but 3 times.

Im also one who doesn’t gets easily overwhelmed by my disease or by all the medical interventions that go along with it, but I have to admit these last couple of years have really sucked. Spending a lot of time in and around hospitals and clinics has a way of wearing even the strongest person down.  On top of that, last month my Pulmonologist classfied my disease as end-stage and recommended I consider pulmonary palliative care. Let me tell you, nothing says “there’s nothing more we can do for you”, than being referred for palliative care. Now I know that palliative care is totally different than hospice care and might actually be beneficial, but it’s still involves more doctors, more appts and more time spent on thinking about my health problems. I would also be one of the first people with asthma to be in a program like this.

I think there comes a time when you start believing that because you’re sick so often, that you have to start the living that way full time, even on the good days. You get so frustrated with all the setbacks and disappointments, that you become satisfied with just taking it easy and trying not to rock the boat. Well, the hell with that…. I need to rock the boat.

 

 

 

So that brings me to today and the patting of my own back.  Today I pushed myself into walking non-stop for a full hour .  I covered less than 3 miles at a snails pace, but it might as well have been a full marathon because it’s farther than Ive walked in over a year. It was extremely hard to breath, especially on the hills, but not because Im out of shape, Ive still been getting in a mile and a half per day. My breathing sucked because my lung function is lower than its ever been, that’s just the way it is. As difficult as today’s walk was though, it felt good in my head and was just the right sized challenge I needed to pull myself out of this terrible rut Ive been in. Today’s mini-achievement reminded me once again that Im not my disease.  I might not be able to move as fast as I used to, but I can still move, and more importantly… that I need to. Im going to be short of breath no matter what, so might as well do something that’s “non-medical”  that Im good at, which is also healthy. Im still limping a little on my right side from the accident in late Dec, but not much pain anymore, unless I torgue it the wrong way.

You’ve probably heard this expressionbantered around in social media , but it’s so true. Those of us who live with a chronic disease , can get so caught up with all the sickness and medical crap going on in our lives, that we often forget who we really are. We are just regular people who unfortunately have health problems that we have to deal with. Our diseases, whatever they might be, can only take over if we let it.

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5 thoughts on “I almost forgot who I am

  1. Stephen, I just found your site. I’m sitting at home recovering from an asthma flare up and was getting depressed because I had been doing really well with my walking and this just blew me off course. You are an encouragement! Keep on keeping on! I look forward to reading the archives to hear about your journey.

  2. Hi Grace, Try not to get too discouraged. These kinds of set backs are unfortunately a common occurrence for many of us. But you’ll make up of for those losses once you start to feel better again. Don’t give up on what you like to do, just start off slow and you’ll get back to where you were.

  3. It’s really hard when you feel like you lose who you are. I haven’t commented since I was extubated (the second time) a week and a half ago, but in that time I’ve lost what felt like the most important part of myself- my independence. I developed severe leg weakness during my second ICU stay and haven’t been able to walk since. Though my lungs bounced back (that’s how it works for me, I spend days not responding to treatment and then suddenly everything kicks in) and I was cleared by pulmonology, I couldn’t go home. After much waiting and a battle with the insurance company, I got transferred to a rehab hospital 2 days ago for intensive physical therapy. At least here I have a wheelchair and am allowed to move about on my own, so I’m regaining some of my independence- which feels amazing! I don’t know how long I’ll be here, but I never imagined my asthma would take this away from me…I’m going to be working really hard to get back my muscles and mobility, so I can get home and back to my life!

  4. Hi Stephen, I have had asthma when I was little, and it went away. Now I’m 23 and my asthma has full-blown recurred. I am very happy and inspired to have read that someone out there isn’t letting asthma get in the way of their dreams and goals in life. Thank you for reminding me that I should pursue the things that I love and not be hindered by this condition.

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