Kings Island

Stacey,

One day, not so long ago, I was thinking about good blog topics for us to explore all that we have in common. One random thought was Kings Island, as any girl living in Ohio would have something to say about this place. Then, a few days later, you post something on your Confessions blog about going to Kings Island. Not that I needed any more proof you are my soul cyster, but really? For having never met each other, I can't believe how connected we are sometimes. :)

Anyway, living in Chicago as a young girl, I remember my Grandparents taking to me to Kings Island. I was very young (maybe 4?) and I don't remember the details, I just remember being there with Grandma and Grandpa. Kings Island is a special place to me because it is one of the few memories I have of my Grandpa...being there with him.

What does Kings Island mean to you?

Did you go as a little girl?

Lots of love to you,

Colleen

The Exercise MUST

Exercise has become the key to my health. I have been exercising regularly since 2000. I've always had a gym membership. For a long time I thought I was exercising to "stay skinny" but I have learned over the years that it is really about my health and keeping these lungs clear. It is my main form of mucus clearance. I keep a goal of trying to get to the gym four times a week. Additionally, I use the Acapella for mucus clearance. I try to use it every night. Some times I forget. Yeah, I'll admit it.

I keep things changing at the gym or I will get bored and not go. I do something different each time I am there: elliptical, weights, bike, walking, swimming, water aerobics, yoga. I try and rotate between these options. Some times I'll stay home and do an aerobics video. I just have to keep things changing.

Actually, I have to admit, I am proud of myself for keeping with a regular exercise routine. I hear the excuses people make to get out of exercising. Its weak. I don't want to be that person. (And by this I just mean the general population...not excuses CFer make).

I have some experience with Yoga and I love it. Believe it or not, it is the ultimate form of mucus clearance. Yoga involves deep breathing, which really gives the lungs a super workout. It may not get your heart rate up or you may not break a sweat, but it does lead to that productive cough!

I completely agree about keeping up with exercise while we are healthy enough to do so. I have learned that I am so lucky to have my health. I'm not going to take it for granted. Some days its not easy. My head hurts, I'm tired, I just want to be lazy. But in the end there is noting more satisfying that a good workout.

What I CAN Do!

Hey Colleen ~

I am so thrilled that things are still going well for you! I know you were disappointed that you couldn't produce a sputum culture in order to attend the CFRI retreat. That is a bummer. However, how great that your lungs are that clear!!! My lungs have actually been feeling good for the past 4 days or so. It took a couple weeks for the Doxy to kick in, but it seems to be going OK now. I just learned more about the mycobacterium that I cultured prior to my tune-up. If you haven't yet, read my blog post from today for those details. I have a clinic appointment next Wednesday. I may be starting a one year course of treatment. I really hope that knocks my lungs back into shape. It's really frustrating that every single time I go off of abx, I have an exacerbation within days.

So, with the frustrations and helplessness I have felt over the past couple months, I chose to focus my energy on positive things that I CAN do for myself. One of those things is exercise. My doctor allows me to replace one vest treatment a day with a one hour session of cardio exercise. The vest makes me itch, so I love the option to opt out of a daily treatment. I used to run, but I realized that I got bored a lot while running. I also had no motivation to really push myself when I got tired or winded. I would have a great day where I could talk myself into finishing a few miles, then the next day I had to drag myself through one mile.

About 3 years ago, right around the time my CF symptoms started getting worse, I was introduced by a friend to an aerobics class. It includes 40 minutes of cardio and 20 minutes of strength training. I find that for me I need to work out in a group-type setting. Knowing that others are watching and that if I quit, they will know, makes me continue. Even when I have little breath left. Even when I feel a wall of exhaustion. I guess it's peer pressure? Whatever it is...it works! I have gone to these classes religiously 4-6 times per week. On occasion, I'll even try to stay for back to back classes. It helps me feel healthy, even if my doctors tell me I'm not. It helps me feel strong. It helps my mood tremendously. Basically, I'm addicted.

I know you are aware that my PFT's have dropped 30% in the past 3 years. When I look back, I shutter to think how much lower they may have gotten if I hadn't been so active during those years. I feel like being introduced to this type of exercise program came at just the right time in my life. I also know that many with CF are not physically able to participate in this type of aerobic activity. It's not that they don't want to...it's that they just physically are unable. I think that's what motivates me to get my butt out of bed and work-out each day. As long as I am physically able, I MUST take advantage of my abilities. One day I may not be as able.

So what are some of the things that you do for your health, while dealing with this relentless disease of ours?

Hugs ~
Stacey

When to ask for meds...

...is a question I always struggle with. It's hard to judge my "normal" cough with an increased-we-have-a-problem-cough. Generally, the only time I need meds is after catching a cold. It always ends up in my chest with lots of coughing, especially at night. Ok, that is easy to judge. But after being on IVs my lungs are so clear, looking back I realized maybe my lungs needed these meds long ago and I just didn't realize it. So now what? Freak out at any little cough and call up the doctor? Probably not that extreme, but I think I have to be honest with myself in understanding that I may need antibiotics more than before. Not because I am sicker, but because I should of been on them regularly all along. I am more educated now. But the question still remains...how will I know? Can I trust myself to know?

I think you have a good plan. Regular clinic visits. Discuss your syptoms with the doctor, gauge your lungs with regular PFT results. Aggressive care is good, but really assess when you need treatment. Don't think about how often others with CF are on meds; make the judgement based on your own body.

This Sunday will mark my third week off IVs. I am still feeling good: clear lungs and clear sinuses. With everyday I am hopeful to have at least one more day feeling good. I'm sorry you had a change in symptoms. How are the new meds?

Stay strong,

Colleen

Can I Trust Myself?

Hey Colleen -

Sorry it's taken a while to get back. It was a pretty crazy week. I know that you read about my reaction to the Nafcillin in my Confessions blog. That was a huge bummer. It stinks to think that the entire category of Penicillin drugs won't be an option for me. I had a clinic visit on Wednesday and got my PICC pulled. I kinda spouted a bunch of blood. I soaked through a paper towel. I had to hold my arm over my head for about 5 minutes, while the Dr. put pressure on it. The removal itself was completely painless, though!

The thing that bummed me out most about the clinic visit is that my PFT's did not improve, not one little percentage point. UGH! They are not horrible, but I expected that all of that work would have given me some kind of tangible benefit that I could see on paper. Not this time... I do, however, feel good.

Here's my biggest fear right now... I don't know if I can trust my instincts to know when I'm going to need more treatments or medical intervention. When I had the 30% decline in my pulmonary function it completely snuck up on me. I had no major indicators that told me that my health was declining. My body compensated. I am going in to see my Dr. every 9 weeks, so I'm sure we'll catch it pretty quickly. I think having healthier lungs over the years, compared to others with CF, has given me a false sense of security. I've now just completed a tune-up and I can no longer hide in that comfortable state of denial. I have made a decision that I want to be extremely aggressive with my care from this point forward. If I have a choice between orals and IV's, I'm doing IV's. If I have a choice of whether to treat the mycobacterium that I cultured, I will choose to treat. I think the past year has scared me straight. I just need to work on learning how to "read" my body, like others with CF have seemed to master.

I know you wanted to update me about how it's been for you post-IV's. I'm hoping it's all good! Let me know...

Hugs -
Stacey

It's No Big Deal...

Stacey,



"It's no big deal" is how I would summarize my whole attitude with CF. And in a way, for me, having CF really isn't a big deal...at least not at this point in my life. When I look around at those with CF waiting for a lung transplant or recovering from one, I think to myself, THAT is a big deal. When I see people much younger than me who can't work because of the 6 hours they need during the day to administer treatments, I think THAT is a big deal. When I see those in and out of the hospital for weeks at a time, parents who have to plan a child's funeral, young women giving in to the fact that they will not be able to have children...I think you get my point. That is not to say that we, however, should minimize our relationship to this disease, its just hard because this disease is affecting me so different then it does with other people. Maybe one day that will be me. It's hard to think about.



A lot of people don't even know I have CF, mostly because of my "No Big Deal" attitude. It is like I am almost embarrassed to tell people I have CF because I don't want them to get the wrong idea. When I tell anyone that I have CF, I feel like the next thing I have to say is "but I am REALLY healthily" or "it's mild." I can't just say it and let it be what it is. In a way, I feel like I am trying to protect people in some way. Or maybe you are right...I can't just admit to myself that it is a big deal, mild case or not.



I guess I have a few good PICC line stories of my own. I would find people looking, but like you said in your Confession's blog, its expected...I would do the same. I found people at work asking the most questions, which I also expected. I did catch one guy in the grocery store staring longer then the normal glance-and-look-away. The only really awkward moment was doing my treatments at a friends house during a 4th of July party. I tried to just find my own space and do my own thing. Most people would just walk by with no reaction. Almost everyone at the party knew what I was doing and why. But one person walked by and stopped and looked at me like I was shooting up heroin or something. It was priceless. Wish I had a camera. I couldn't help but apologize and say something like this will only take me about 10 minutes.



The PICC line removal was painless. No blood. There is a little scab right now and it is healing fine. My skin is super dry, so I am just trying to keep lotion on it. Good luck with your appointment. Let me know what happens. Stay strong. Stay positive.

Re: PICC is Gone

Hey Colleen ~

It's gone? Just like that? Did it bleed a ton when it came out? I have an appointment on Wednesday. I'm going to do a PFT and we'll decide what to do. I am actually hoping its gone by the following week. I really want to take a couple day trip with the family and it would be a bummer to have to take care of it out of town. I think mentally I want to keep the PICC for what it symbolizes, but physically, I will be happy when it's gone.

I have been trying to be kind to myself. I got a mani/pedi today and ate a Twix bar...YUM! I feel like I'm allowing myself little pleasures to make up for the stress that this has caused over the past weeks.

I just posted a blog about strangers reactions to my PICC. I would love to hear what your experiences were over the past couple weeks. I didn't mention this in my blog, but today at the mall I had the cashier at Justice ask me what was going on with my arm. She was curious, because she is going to nursing school. I was honored that she asked, but embarrassed when I told her. I did the whole "It's no big deal" thing. It's just a little lung disease, nothing horrible. I think this is my reflex response in an attempt to spare other people's feelings. It IS a horrible disease and the treatments ARE a big deal. I just can't say it out loud. Maybe then I would have to admit it to myself... Do you ever react like this???

I'm so proud of you, that you made it through the treatments and are back to "normal"!

Hugs ~
Stacey