Two weeks living like a Zooble

I’m happy because 2010 didn’t end with a hospitalization due to coughing up blood. Instead, I spent the two weeks with my daughter. I wish I could say that we got a lot done or did something important like discover a cure for cystic fibrosis while playing with Zoobles in our living room, but we didn’t, though I did make sure Zoobleland is CF-free. All of the little critters are healthy. There’s something to be said for being able to turn yourself into a protective ball when needed. This magic power allows Zoobles to escape all illness and evil in the world. I wish I could do the same.

The damn Zoobles had a party and drank my Cayston, which is like 80 proof alcohol to them.

So, when we weren’t playing with little plastic toys made in China, the two of us spent a lot of time being potatoes, or slow-moving potatoes, which one might call turtles. We played Donkey Kong Wii and did some shopping. We looked for a new pre-owned car, which was a major pain in the ass and a task that is still unfinished. Thinking back on the time now, I’m not sure where it went or exactly what we did to fill every moment. But it passed, and it passed without going to the hospital.

Though time went by fast, it wasn’t stress-free. I had plenty of blood streaks to remind me it was there, waiting, lurking, ready to explode without warning. But thanks to the miracle of Cayston and three treatments a day, I escaped the hospital. I’m so lucky. Have I mentioned that before?

I have a clinic appointment this week. Though I’m feeling okay, I need to speak to the doctor about the psychology of the blood and what it’s doing to me mentally. Every cough feels like it’s the beginning of a hospitalization. I took measures over the holidays to minimize the risk of bleeding, e.g., not exercising. My plan for 2011 is to get aggressive and exercise and force the blood to come out if it’s there. Then embolize it right away. I can’t go about living with such a nasty timebomb waiting to interrupt my life. I want to go after it and not feel like I’m waiting for it. It’s time to run into battle not flee it. Let’s see how that works out. I’ll keep you posted.

Stay healthy.

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10 thoughts on “Two weeks living like a Zooble

  1. I’m really happy you’ve had 2 weeks of doing sweet FA, and have spent it with your family without any major incidents, (fingers and many other things crossed that this continues) but I sense that CF best run and hide it’s sorry arse from you now you are on it’s case with a new years plan to give it hell, I know that there will be some tough times to come, but you will have an army of people supporting you every step of the way. Good luck with your clinic visit and here’s to a Happy and healthy New Year. 🙂

    • Sean,

      Happy New Year to you and the family. I wish we lived close together and could hang out, see a cricket or soccer match. If I could get the blood worked out, I’d come visit you.

      John

  2. Ah, Zoobles look more fun than the Squinkies I’ve had to play with/step on every ten feet. Good thing they are CF-free too! Did you know that there is a new doll called “Sick Baby”? You buy the doll sick and try to make it well…hmm… So, if you REALLY plan on exercising (exorcising) the blood out, please at least have your cell phone in hand with 911 on speed dial. Sorry about the “waiting for the other shoe to drop” feelings… So, so frustrating.

  3. I know the sheer joy of making it through winter break without the hospital- it feels like such a win! Thanks for putting it into words.
    This past week was the first winter break in 3 years that I was at home with my husband and daughter, iv free. (Last year was spent in the hospital over Christmas and New Years Eve, and the year before that, at home with the close companionship of a picc line feeding me iv abx). I did my time in the hole in November, so I felt grateful to finally have a “normal”, minimally invasive winter break vacation.
    My clinic appt comes up in a few weeks, so I too am waiting for that big ol’ shoe.
    Hope you find some peace and quiet and blood-free coughing in 2011. Will be sending you “fairy dust”, as my daughter likes to say.

    • L,

      I am so happy you were not in the hospital over the holidays – and IV free. That’s wonderful. I did my time Thanksgiving weekend. I thought for sure I’d be back over Christmas.

      Thanks for the fairy dust. I can always use that. I wish you the best this year and hope you stay out of the hole.

      I appreciate the comment and visit.

      John

      John

  4. Hemotypsis is one of the scariest parts I’ve ever experienced. There are a lot of themes in your writing – fear of the “next time”, anxiety about ‘what if it happens in public” (I got hemoptysis on a plane last week, en route to our vacation – fun, huh!) – and I wonder if you are in therapy to deal with those issues. I was, and therapy helped me TREMENDOUSLY to deal with this profound psychological power that hemoptysis had in my life. I am far less fearful of it than I used to be: I know now what to do, I now have a plan, etc.

    BTW of course I am not a doctor, but I wonder about “exercising to make it bleed”. It’s not like a cork that you need to force out of a bottle; the blood vessels need to heal, which exercise (and strenuous coughing) only impede. Maybe not a good idea physically to force the blood to come out; though it may feel better emotionally, I think it only damages the blood vessels further and makes more hemoptysis likely in future exacerbations. Let yourself heal, heal, heal, rest. 🙂 – Laura 47 yr old w/CF in California

    • Laura,

      Very interesting comment. I really appreciate you taking the time to write it. What a drag that you bled on the plane. I feel for you on that one, as it happened to me once. I hope it’s resolved itself. Or you’re better now.

      Regarding therapy, it’s interesting that it’s helped you. I’m not sure if it would help me or not. I”ll give it some thought. I know what to do when it happens. I just don’t like having to do it, which is going to the hospital for IVs, or an embolization.

      I’m glad you mentioned the exercise and bleeding. It allows me to clarify. I won’t exercise just to get the blood to come out. I need to exercise to help my lungs improve. I’ll be careful. Even without exercise, the blood comes. And my lung function is going down. I need to try to be proactive about the reduced lung function. I won’t go past the point of forcing the blood. But I don’t feel like waiting for it either while I lose more lung function. It’s a hard balance.

      Thanks again for the thoughtful comment. Much appreciated. You and I are close in age and living in the same state. I hope you’re surviving the rain. I’m tired of it.

      Happy New Year,

      John

  5. Happy New Year to you. I was hoping you’d get to spend quality time with your little girl! I’m sure she enjoyed just hanging w/ dad. And you may have needed to not accomplish anything for once. 🙂 Take care.

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