Frustration and fear

Due to the fact that people with CF are not supposed to be in close physical contact with each other (because of the risk of cross-contamination of the many bacteria that inhabit our lungs), there is a pretty strong online support community. I will admit that I do not participate in this community because I honestly find it more depressing than helpful. A visit to a person's Facebook page or blog leaves no doubt that they have CF, that they hate it, and that it's all they want to talk about. I do not hide the fact that I have CF but... I don't define myself by it and I don't let it consume me. Perhaps I would be wise to focus on it more because, honestly, until recently, I've never made a life decision with even a second thought to the fact that I have CF, and maybe there are some things I should have thought through more carefully (going to Costa Rica without meds?). Part of that is because I've been blessed with very good health, but I think it's also due to the way my parents raised us as if we were normal and could do anything that anyone else could do. But, either way, I simply don't like to spend time whining about CF and feeling sorry for myself.

So, in spite of my recent posts and at the risk of my blog turning into a CF gripe fest that I hate, and despite the fear that someone stumbling upon my blog would think that CF consumes my blog and my life, I go ahead with the following post because I find writing therapeutic ... 

As I said above, I try to keep a positive attitude towards my health. I don't think it benefits anyone to ask "why me?". But I also don't think I'd be blamed for being a bit down lately. The truth is I am frustrated and scared.

I'm frustrated that I can't be there for my family in the way I want to be. I set high standards for myself, and I recognize that, but it's very frustrating to not have the energy to do the things I want. Recently Drew, who has always had nothing but great reports from his teachers, has been having some "off days" at school and I hate the fact that it's because of me. I know that's a lot of blame to put on myself, but it's not a secret that kids often struggle when their parents are ill. Between the lack of energy, and the time being put into getting better, plus the fact that Jason has to pick up the slack on everything else around the house, there's not as much attention to go around for the kids. James, too, has been quite clingy and fussy lately. I'm happy to sit and cuddle with James, but it's not so easy with Drew. Because he LOVES to talk and be listened to, I decided Drew could really use some one-on-one time so I took him on a date this week. Unfortunately it ended up being on the day of my follow-up CF appointment that went all wrong. They wanted me to do a chest CT scan that day and I refused because I wasn't going to miss my date with my son. But even still, I had to deal with pharmacy calls for the new IV antibiotics on our way to lunch. Once we got there I put my phone on silent and decided I could handle the voice mails when our lunch was over. Drew was just a little over the moon at having lunch at the airport where we watched planes taking off and we even saw a really looooong train go by!

As if that's not enough to be frustrated about, I find myself incredibly frustrated by the fact that I feel like I'm not in control. I've always been able to achieve what I set my mind to do. From high grades in school, to having two natural births, to running a half marathon, to cloth diapering... once I set my mind to something, I am usually successful. I have set my mind to get healthier and so far I've failed. No, I don't really label it as a failure, but the perfectionist and control freak in me has a really hard time dealing with the fact that I am not fully in control of this situation. In the past when I've had dips in lung function I get a little more serious about doing my meds and exercising and I bounce right back. Now it feels like my effort is getting me nowhere and that's frustrating. I have been doing all my medicines religiously. I've agreed to do this exhausting and frustrating IV thing. I had a sinus surgery done. I've been researching other things I can do to improve my health (best diet, supplements that are beneficial, etc.). I've been trying so very hard to get out and exercise. I have never put this much effort into something and not gotten the results I expected.

And that's what leads to the fear. Cystic fibrosis is scary- it's a degenerative disease with no cure. Not having control over it terrifies me. I touched on it briefly above, but here's a fact you may not know about cystic fibrosis: people with CF are susceptible to bacterial infections that "normal people" are not susceptible to. Research has found that these bacteria, once in the lungs of a person with CF (lungs that are lined with thicker, stickier mucus making it easy to catch these bacteria in the first place), behave differently and form almost impenetrable shells making them incredibly difficult, if not impossible, to kill. Cystic fibrosis treatments focus on managing the colonies of these bacteria in our lungs so we are constantly on various oral and inhaled antibiotics, and occasionally require IV antibiotics. Pseudomonas aeuruginosa is one of the most common bacteria, and one that I myself culture (ie. grows from sputum cultures I give... even though that's just as cryptic, I won't give any more details than that*). Recently I've also been culturing MRSA. While neither of these are as scary as burkholderia cepacia, they certainly wreak enough of their own havoc. I've cultured pseudomonas for so long (since high school? Maybe even earlier?) that I've never thought much about it, but it's finally getting my attention and it's scary. [Note: this is my non-scientist understanding of very complicated sciencey things].

So I'm frustrated and I'm scared, but I am thankful that I have doctors who don't just look at this as "typical CF." Yes, we are expected to lose lung function as we age, but my doctors know this isn't typical for me and are trying to get to the bottom of it. Some of the possibilities are just as scary (CF-related diabetes), but I'm just hopeful it's something I can do something about so I can feel in control again. 

And in the meantime, I can't forget that I have an amazing support group. I have my amazing husband who works so hard and does so much it's really too much to even describe. I have my sister and as much as it sucks that she has to go through this too, it's nice to have each other when CF can be such a lonely disease. I have amazing parents that taught me that I am normal and to fully live my life, and who also come to my side at the drop of a hat (my mom is cutting a trip to Canada short in order to fly here on Monday to help out. She went to visit my grandma for her birthday and she'll be leaving ON her birthday. :( My Grandma is pretty awesome and understanding too!). I have so many friends that, in spite of everything they have going on, are happy to help out when called on. And I have an amazing God. Others might ask the "why me?" questions or even play the blame game; instead, I truly believe God works in His own mysterious ways that we may never understand on this side of heaven. Right now I believe He's trying to get my attention and I fully trust His plan for me. He is my rock and comfort in these difficult times and I relax in the knowledge that He loves and cares for me.

Proverbs 3:5-8 Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight. Do not be wise in your own eyes; fear the Lord and shun evil. This will bring health to your body and nourishment to your bones.

*Anything that I "won't give any more details" about is only as protection for those reading. As CF has a lot to do with "gross things", like mucus, I worry I'll gross people out. But I am never offended when people ask questions and I'm very open if I know you want to know more. So, please feel free to ask questions if you're ever curious!