CF Happens

I’m in my feels today. This is going to be a long, laying my heart out there, post. Hang in there until the end. I think it’s worth it. You may have a better glimpse into my heart and my life with CF.

I was talking to a friend the other day checking in. We asked how each other were doing/feeling. She doesn’t have CF but she has her own health struggles.

I was explaining that I’ve been very tight and wheezy lately. Duoneb (Albuterol-Atrovent combo) isn’t giving me much relief. The reason I’m not getting much relief is because of disease progression, scarring in my lungs from CF, bad asthma and bronchiectasis. A lot of factors. She asked if the progression can be slowed down. I explained that not much can really be done. The disease process is what it is. You can’t change it. I said that we are hoping that Trikafta is slowing my progression but none of the damage that has been done can be reversed or fixed.

She said, “that’s bullshit. We need new inventive drugs that can heal what you have and what I have.” I agree 100% but unfortunately CF is not a government funded disease for research. Money for CF research comes from us common folks and the occasional big company.

CF is a rare disease with only around 30,000 people in the US that have CF and around 70,000 people worldwide. To qualify as a rare disease there has to be 200,000 or less people affected with the disease in question. So yes, CF is pretty dang rare. The only reason a non-CFer even knows CF is a thing is because they have someone in their life (family or friend) that has CF. You don’t see commercials about CF.

The CF world is a pretty small world. No, I don’t know every CFer that lives in the US but you can almost bet that I know someone who knows someone who knows them. It’s very much a “6 degrees of Kevin Bacon” kind of thing. If you don’t know what the “6 degrees of Kevin Bacon” is, google it. haha

I say all that to say, I really appreciate every single person that is a part of my life. Thank you for loving and supporting me. I know that if you don’t have CF and aren’t a “caregiver” for someone with CF, you are not going to understand the day to day and I don’t expect you to. My husband doesn’t like the term “caregiver” because he says he’s just a husband with a wife that happens to have CF. We prefer to say “CFer’s husband.” He says, “I just do what a husband should do when you sign up to be in a relationship with a sick person. There were times in my military career that you just did what needed to be done with the kids and house when I was gone. It’s the same kind of thing. You do what you gotta do.”

He always says, “I don’t need or want accolades. I’m doing what a husband should do. Nothing above and beyond, just doing what needs to be done. There are days that you do more than me which is just part of being in a relationship.”

If you aren’t a CFer’s husband/wife you can’t/won’t understand what goes into being in that role even beyond the physical side of it. He’s the only one that actually see the day to day. Others see me out and about, after I’ve done a breathing treatment to get me by until the next treatment. People on the outside don’t see the other side of things and they don’t have to because this is my journey, not theirs. I don’t show the daily physical pain (slight pain or a lot), shortness of breath, wheezing, trying not to have a panic attack when I feel like I can’t get enough air in, blood sugar dropping, not feeling right in the head but not being able to explain that, hating having to deal with CF everyday, etc. I don’t make those things known because I don’t want people feeling sorry for me because I don’t feel sorry for myself. Trust me, I do have my “this really F’ing sucks and I don’t want to do it anymore,” days but I pick myself up and keep going.

Everyone says, “Shannon, you’re so strong. You’re always so busy.” Yada yada. Well, if I were to stay home and dwell on how crappy I feel and dwell on what my limitations are I would be a miserable negative person and that’s just not who I am. I choose to do everything I can, while I can still do them. I know (thanks to CF) that the time will come when I’m not able to do all the things I want to do. I don’t want to miss out on things, out of fear. I want to do things the best I can. That doesn’t mean I am able to do all the things I want to but I sure try.

I know loving and caring (not the physical part but the emotional part) for a sick person is NOT easy. You are always reminded that their time on earth might be much shorter than you want. It can be hard to get close to them because you’re afraid of losing them and feeling the pain of losing them. Loving a sick person is not for everyone. I will respect you much more for being honest about not being able to handle losing me rather than having the out of sight out of mind mentally. Trust me when I say, that way of thinking won’t make it hurt any less.

Just remember, it’s not easy being the sick person knowing you will leave everyone behind. I have guilt about hurting people’s hearts when I die, just by not being here anymore. I talk about this often with my counselor. She reminds me that I’m not in charge of other people’s feelings or how they will grieve me when I’m gone. Me being the one that wants to make things “ok” thinks that I can “help” people grieve my loss in the future by trying to prepare them now to live without me. Shannon, it doesn’t work that way.

I have not let the fear of people living without me in the future and how they will feel losing me stop me from making friends and being all that I can be for my friends. That may sound selfish in the way I worded it but know my heart when I say it. I’m continuing to live my life and do all the things outside of my fears.

I know this is a lengthy post but it’s truly what’s on my heart today. Sometimes when people ask how I’m feeling/doing and they immediately follow it up with “you look great!” before I can answer, I choose to say “looks can be deceiving.” Some days are much better than others. Some days I feel like I’m swimming in med and not getting anywhere. This is my journey and I know I can do it because it was given to me. That doesn’t mean I’m not going to throw some tantrums along the way.

Thanks for making it to the end of this post. Until next time…