CF Control, progression, and guilt

I have read this challenge on several blogs and decided to take the challenge myself. I had to go through several blogs to find the original poster bc I felt they deserved the credit. Anyways, http://amatteroflifeandbreath.blogspot.com was the cyster that posted the challenge.

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.


The problem with a progressive disease is that as we decline we have no idea if it was due to something we did or did not do OR if it is the natural way our lungs are declining. We are given tools and meds in order to increase our chances of keeping infections at bay and our lung functions as high as possible, but these tools do not guarantee success. In fact, even with all of these tools we will all most likely die of this disease. The gray area creates problems. Because no doc can say your decline was absolutely because you missed that dose of pulmozyme one too many times, or the decline was 100% unavoidable it leaves the patient to always wonder. What else could I have done? Could I have gone to the hospital sooner? Could I have worked out more? The list goes on and on. I wanted to explain my story of guilt and feeling like I wasn't a "good" enough CFer and what I feel about compliant and decline today.

I had an unusually late diagnosis at the age of 14. This created a few obvious problems considering I was a middle schooler and a teen. I was told by my doctors to take a few inhaled meds (puffers) and to use my flutter once a day. I look back and think how EASY I had it then, but in my illogical 14 year old brain I used to think, "I have lived 14 years without ANYTHING it is not a big deal if I skip my flutter." I HATED that thing and I HATED looking at my mucus. When I started my flutter I used to do it in the bathroom with the lights off so I wouldn't have to look at the disgusting slime coming out of my lungs.

As time went on I was instructed to do more to take care of my health, but I was so determined not to let it interfere with my life that my health took a back seat to having fun. I wanted to live in the dorms in college which meant late nights and MANY missed treatments. I wanted to be seen as normal so I hid my disease from roommates and boyfriends resulting in more missed treatments. I decided to go abroad for a summer and volunteer, but couldn't bring my vest. My health during this time slowly declined.

I am now 27 with lung function much lower than it used to be. Was this because of my spotty compliance? Was it natural progression? I don't know, but I cannot help feeling that I had a lot to do with where I am today, both good and bad.

I carried a lot of disappointment and hate towards my 14 year old self for feeling that this disease was not serious and therefore I did not need to be compliant. I carried a lot of shame and disgust for hiding my CF from others. I was putting what others thought of me OVER a long happy life? Really!? REALLY?! This guilt weighed heavily on me for a long time!

BUT I have to say that I have been able to let the feeling of guilt (mostly) go. I was a child and I made childish mistakes. As a teacher, I try to picture myself as one of my students and it puts it in perspective. I was LEARNING how to care for myself and this disease. I made mistakes and I made some good choices too. I think it is important to do your best and don't stress over the little mistakes, we are not perfect and we were never expected to be perfect.

Today I am super compliant. I have made my health my one priority, but I am not perfect. With my imperfections I find the guilt still sneaks in. If I decided not to go to the gym in order to go to coffee with a friend I feel twinges of guilt. If I forget a dose of Cayston I feel guilt creeping into my thoughts. I have to constantly remind myself that I am doing my best while still have a life I enjoy! I also have to remember that we are not in control of this disease. We cannot stop decline or new bacteria from finding its way in our lungs, BUT we can do our best to help our bodies fight this never ending battle. I like to think it is a 20/80. 20% is controllable (although this may be generous) and 80% is nature/genes/whatever. I work as hard as I can to help out my 20%, but I also know when I get an infection that I can't shake or if my numbers drop it is not my fault. At that moment we can reassess our 20%. What else can I do to make myself healthier or feel better? But knowing that I am not the one in charge of when my lung function drops and infections arise sure makes breathing a little bit easier.

Back To Where I Started

So I have been on cipro and bactrim for a few days now and I feel almost back to baseline. I am still more tired than usual, but lung wise I feel good. In fact, my peak flow is back to my personal best! This may be the first time in my life that I caught an infection right away. Usually when I feel bad I give it a day or two because sometimes I just have a random off days. Then I usually try to do a few more treatments for a few days to see if that will clear it up and then usually I am super sick and need meds and am thinking, why oh why didn't I call sooner? I am no longer going to try to wait it out because it simply does not work.

Nausea is still involved in all aspects of my life. I have a feeling I am going to be losing weight because of these stupid meds. Last night I did manage to eat a bowl of cereal without wanting to die so that is a positive. Of course cereal for dinner would make my doctors frown and crinkle their eyebrows at me, but then again I could just throw up on them to show that this nausea means business. I am even disgusted by my Ensure which is usually my go to snack.

A little Fizzy NAC update: The flavor = eew. The ease of it = nice. The cost = sucks. The benefits of it = ???
I just can't tell due to being on meds and still a little under the weather. I am not sure what it is supposed to feel like, but apparently people say they feel much better on it. I will tell you if I feel anything in the upcoming weeks.

And So It Begins...

As I mentioned earlier, I am on the "good stuff" which comes with some not so good side effects. I love being on orals (vs PICC) because I can still swim and be active, but my body really hates them. I used to take them with no problems at all, but for the past year or two I get one particular nasty side effect! I have been on them for only a few days and it has already set in.

This morning I made a big breakfast with bacon and sausage (sometimes being a CFer has its perks)and eggs. The second I put down my fork after finishing off my meal the Bactrim hit hard! I looked at my husband and said, "I really feel like I need to throw up!" A wonderful thing to say to someone who is still eating, I know! Luckily, I never actually throw up, but I am tortured for a good while after every meal. I went and moaned on the couch...mainly for sympathy and over time it passed and life went on.

Fast forward to the early evening. I was hungry after yoga and because you can't eat junk food after yoga I decided to make a smoothie. I also find that liquids are less barf inducing. As I got everything ready I focused on how delicious it would be to distract myself from any oncoming nausea. The fruit was ripe and as I cut into each piece it gave off an amazing aroma. Everything seemed fine and no inkling of nausea. Pouring it in the glass, it looked perfect and I felt fine. I took a few sips and actually really enjoyed it. About 4 sips in, Bactrim took over and FAST. Ugh! I so want to barf right now. I really can't complain about it because people don't appreciate being told you want to blow chunks all the time. Something about it is a turn off. So here I am staring at a beautiful smoothie, listening to my stomach grumble from hunger, wishing I could just insert the smoothie in my stomach without actually drinking it.

Fizzy NAC

I have read SO much about fizzy NAC recently through different CF forums and I have been dying to try it. I have heard a LOT of good things and some people saying it did nothing. I so want to see if it does any good for me. It is really expensive at $25.00 a box w/taxes and one box will only get me through 10 days! Considering my husband and I don't make very much money and my health is already rather expensive, it is a little steep. The cost is why I did not order it sooner. I tried to get my doc to order mucomyst (which is the same as Fizzy NAC, but tastes much worse apparently) so insurance would cover it, but he refused. He then told me that if I went out and bought is myself (fizzy NAC) he couldn't stop me and would not think any differently towards me. He is SO conservative when it comes to meds. I am always trying to convince him to let me try new things and he always says no.

I went ahead and forked over the $25.25 for fizzy NAC and just received it in the mail today where I promptly took the first dose. I am a little torn if I should be taking it. As we discovered in past posts, I am a horrible scientist. I know I cannot give NAC a fair assessment because I am sick and on orals. Will I feel better because of orals or because of NAC or both? Will I think NAC does nothing because I am already sick and therefore do not feel well? Will I think it works wonderfully because as I get over this infection I will naturally feel better? I will have no way of knowing which is precisely why I am a bad scientist. At the same time, I am sick and want to get better ASAP so I of course am going to try anything. I decided in order to give it a fair assessment I will continue to take fizzy NAC for a few months before deciding if I like it or not.

When your life and health and well being is on the line I think we are willing to try almost anything. I so desperately want to grow old with my husband. I realize we will never be the little old couple holding hands on the front porch swing, but I would love to be a CF old person holding my husbands not so old hand. I would love to find grey hairs and even a few crows feet. I would love to be able to order off the seniors menu at restaurant or get a senior discount. It is funny that the things most people dread would be an honor for me to experience. I guess when people complain about growing old they forget that the alternative would be much worse. I wonder how many 27 year olds have these worries.

I Got The Good Stuff

So I am back in home from vacation and my little visitor never went away. That's right, I am sick. Blah! I even had a low grade fever for most of the day. Luckily, I called my doc while out of town to get some orals. They were delivered today and so hopefully they will kick in soon. I slept most of the day and the fever is gone, but I have yet to see my appetite. I go to clinic next week to check my PFTs and if all is well i will continue with another week of orals, if not I will be sporting a PICC once again. I will keep you updated!

Who Invited You?!?

So a not so lovely surprise has been greeting me in the morning. My little morning cough is back. YUCK! I used to wake every morning with a little morning cough, but through my new psycho regiment I have evicted my morning cough for several months. I have also noticed the clear-away-before-speaking noise I make that has come back as well. I notice this mainly when I answer the phone. My clinic is only open on Mondays and I will be out of town on Monday. So I will have to wait until the following Monday to get in. I am going to see if I can get some meds before the appointment. Stupid CF..

Over The river and through the woods.

The husband and I went to take a walk through Muir Woods. I have been wanting to bring him since before we got married and I was excited that we finally made plans to go. A lot of the trees there are between 500-800 years old, but some are as old as 1000 years old! Could you imagine? There is a main path which is paved and easily accessible to all people. They also have paths that go off the main trail that very from a few to several miles long for those that like to hike.

Hubber and I decided to take a path that was called "Ocean View." We started the hike and realized that it was a steep incline because we had to get up and out of the forest in order to see the ocean. We started our hike and about 15 minutes in I told hubber I needed a break. I was kinda huffing and puffing and trying to catch my breath. Hubber and I were looking out at the beautiful scenery while I caught my breath. I then looked him up and down noticing his relaxed demeanor and easy breathing and asked, "Did that make you tired at all?" He looked at me and shrugged, "Nope." I was impressed, but also a little disappointed. I feel like despite my CF I am still pretty active, but comparing myself to a non CFer I realized how much it actually does interfere with my ability to be as active as I would like.

We continued on until a point came that I needed one more break, the last one of the hike. Hubber was a ball of energy and told me to jump on his back. Keep in mind that this hike was not simply a walk, but you are climbing UP a hill so it is a nice incline the whole time and here I am on Hubber's back as he climbs upward on the path. I am happy to say that when he finally put me down he was very out of breath and it made me feel better to know he is not invincible.

I have decided as hard as the hike was I would love to continue to hike. It was such a beautiful setting and a HUGE sense of accomplishment when I was done. Even though I needed a few breaks I was so unbelievably proud of myself when it was all said and done. Here are some pics from our hike.

A little snake we found along the way...

Here was the spectacular ocean view...under all those clouds :(