When Running Is No Longer an Option

Part of my current goal for my health is to gain weight, but more importantly to gain muscle. I am on an appetite stimulant and am quickly gaining the fat I lost through being so sick, but now I have the job of using that energy and calories and gaining as much muscle as possible, since it is a better weight to have. Muscle is much harder to lose than fat so I want to gain weight, but mostly in the form of muscle. The question is how to gain muscle and build my lungs when my lung function is so very low. I took for granted how easy it was to work out with 50% lung function. It seems like an unbelievably daunting, almost impossible task, when your lung function is so very low.

While discussing working out with my doctor last clinic he told me with the most empathetic tone that he doesn't think I should jog anymore. He feels it is too much of a strain for my body and I need to try things that build muscle, but are low stress on the body such as yoga, pilates, weight training on weight machines, etc. He was so sweet in his delivery, worried I would be upset being told I could no longer run, but in my head all I could think was, "YESSSSSSSSSSSS!" 

I started running so I could quit the gym because we needed to save money. Being sick is expensive! Co-pays, prescriptions and my hubby has had to take more time off work than he has sick days for because of my hospital stays and frequent sickness so we have been extra tight when it comes to finances lately. But in all honesty, I hate hate hate running.

So as my doctor requested I rejoined the gym. I had already started going to yoga again a few months back. I have to say being back at the gym and being back in my yoga studio makes me feel so much healthier. I know it hasn't been long enough to actually make much of an improvement, but being in the places I used to go to when I was my healthiest (right before I had K) makes me feel like I am that person again, the "healthy" person, the strong person, the fit person. I feel a new sense of hope, being in these places knowing that each day I am slowly, but surely making my body, my lungs, my spirit just a little bit stronger. Maybe, just maybe someday I can be that healthy strong person again!

Down The Rabbit Hole I Go

I have found myself in a place that makes no sense at all. It all seems to get "curiouser and curiouser" in the worst kind of way.

Last Monday, I went to clinic. When it was time to see my doctor (I usually see one of the two) both doctors came in to talk to me. I knew right then that things couldn't be good. You don't get two specialists sitting in your room if things are going well. My numbers dropped again. I am now dancing in the 20s. The 20s are a wonderful number when it refers to your age, not so much when it is your lung function. The problem is nothing makes sense and nobody knows why. Let me show you what I mean:

After getting super sick and losing a ton of lung function from the flu I had several rounds of IVs where my lung function went up slightly, but I could never get them out of the 30s which is far lower than my (old?) baseline of 50.  So after feeling like IVs and increased CPT wasn't getting me anywhere I decided go get more proactive and here are the results:

Hospital stay = 4% drop in PFTs
Increase CPT to 4x/day everyday for a few months (and going) = 1% drop in PFTs
Go on steroids = 4% drop in PFTs

And so the harder I try the further I fall. The doctors said multiple times that with everything I am doing we should see some improvement and at the very least I should be holding steady. I have no new bugs and the ones I do have are not resistant to anything, I am 100% compliant and do CPT 4x/day everyday. I don't have fungus. I am treating my Psuedo with Cayston and currently on oral abx as well.

 We decided to try one last ditch effort. I am going on an appetite stimulant. I keep losing weight with lung function and even though the dietitian was very happy with my food log I was quick to admit that I eat well only when I am well. When I get sick or fevers (at least once a month and often for a week or more at a time) I just can't find the energy to eat enough. We know there is a correlation between weight and lung function. We hope if I can regain my weight my body will be stronger and more able to heal or fight off germs.

We added a few other changes as well, but the main focus is weight gain and exercise (to build muscle and lung strength). It is interesting that in yoga last night the set was dedicated to building courage and facing the impossible. It felt appropriate given the feat I have ahead.

Prenatal Yoga

So as you may have read in other posts I am a yoga junky and love kundalini yoga. After becoming pregnant I had to stop going to Kundalini and started going to prenatal yoga. I really miss Kundalini and my yogi, but I feel safer going to someone that specializes in pregnancy. I also love that my instructor is a lactation consultant and also teaches birthing classes. The BEST part it is 6 blocks from my house. If it didn't start after dark I would walk to it.

The whole class is on strengthening the mind and body for labor and delivery. She is always telling us what positions to do during contractions, which to do if you experience back labor, and which positions ease baby further into the pelvis. It feels so empowering to be back in yoga and back to being more in touch with my body. I feel so in tune with my lungs, my mind, and my baby during the sessions. Little Peanut gets so quiet and still during the class which is so relaxing that sometimes I feel like I am in a sleep state, when I am not breathing through the fatigue of certain poses that is. Last night at the very end of class when the lights were going back on and everyone started talking little Peanut gave me a nice big flop. I don't think she was ready for class to be over :)

I love looking around the room of all these woman with little babies nestled inside their wombs. The women range in all stages of pregnancy and last night we even had a woman who was due to have a c-section the very next day. I am hoping to befriend some of these other mommies and who knows maybe we can start a playgroup together someday.

No, I am not getting paid to say this.

I was having a about-to-be-under-the-weather type lung day. My lungs felt fuller than usual and as a result I was coughing much more than usual. Blah. I was figuring that the week away and not so compliant vacation was finally catching up with me. I debated whether or not I wanted to go to yoga because I didn't want to be coughing the WHOLE time. I figured my health was more important than avoiding possible humiliation so I decided to make myself go. Most people know I have CF so they know my cough isn't contagious.

I got to yoga and something crazy happened. Now I must warn you I have no reason to promote kundalini yoga and do not get paid, in fact nobody from my yoga studio even knows I have a blog. I instantly felt more opened in my airways. Deep breathing was NOT a problem and I was able to successfully complete ALL aspects of the class without a problem. No wheezing, no crackles, and very little coughing. I was in shock!! I am so excited I almost want to go to yoga more times a week, but it is not cheap so for now I will be satisfied with what I have.

One last note. I know yoga did not make my mucus disappear and that I will have to work EXTRA hard this weekend at clearing my lungs to avoid infection and build up, but I can't deny how amazing I felt during the class.

Kundalini Yoga...not as weird as it sounds.

I started Kundalini yoga a few weeks ago after a relatively long break from yoga. I LOVE it. Although there is a huge spiritual component to the practice I am going to tell you who I chose to start kundalini based off of my own goals.

1. The whole hour and a quarter is dedicated to breath. There are so many different breathing exercises and the whole class you are focused on breathing correctly, deeply, and with your whole lungs. This is PERFECT for a CFer. Being conscience of my breath requires me to inhale deeper than I ever do in daily life because normally I am not paying attention and breath lazily. You know that shallow breathing that we all do when we aren't thinking about breathing...which is pretty much all the time!!

2. Its a time that I get to meditate and clear my mind! The whole yoga session is dedicated to you and being in tune with your body and it isn't about looking cute at the gym or stretching further than anyone else. It's completely 100% about YOU!!!

3. I am much more in tune with my body! I am spending time listening to ME and MY lungs and MY body. I noticed last week that I had more crackles during my deep breathing. I would never hear this otherwise because I never sit and listen to myself doing deep breathing. I proceeded to go home and vest/neb to be proactive. I never would have done this because I would have NO idea that I needed to.

4. The exercises (holding poses or doing repetitive motions for a ridiculously long time) are often mind over matter. Often my muscles are shaking while I am holding a pose and it takes all I can not to quit, BUT yoga also allows you to go to a different part in your mind. I don't know if i can explain it. I try to release my mind from my body and go into a different place (for lack of more descriptive word) and suddenly what seems impossible is very doable. This is so important for anyone, but especially for people with chronic illness. Being able to escape out bodies when we are in pain or about to undergo a procedure is a life saver! It also allows you to release a lot of fear when going into procedures because you are 100% confident you can get through it!

**Disclaimer***
My personal opinion is that the only way to get true results is to go to a true yogi. All of those classes provided at gyms are such a joke. Don't get my wrong I have been to them and you do get a workout and you do relax, but it is NOT true yoga. I call it trendy yoga and is good for a workout, but will never provide the benefits I have listed. That makes me sound stuck up huh?