CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • 4 Weeks Post Back Surgery

    My back is healing well. My incision is all healed. Of course, my back is tight and stiff as is to be expected after being cut open, dissected and glued back together. Also with being very limited on movement for the last 4 weeks. I still can’t bend at the waist, lift anything over a gallon of milk and I can’t twist. With being limited with those things, you get creative so you can get things done. It’s not like I have to be as stiff as a board but I can’t over extended my movements.

    I miss cleaning and doing the laundry. I am one of those weird people that actually enjoys cleaning and organizing. So yes, I’m serious when I say I miss cleaning! I’ve gotten creative in how I can do some things just so I can do a little something to “chip in.” Yes, my husband tells me not to do things but I can’t help it. I don’t like not doing anything. Doing little things here and there helps my mental health honestly. I am doing things in a new creative way that is within my restrictions. It is going to take time to build up my strength as it is, so I do a little and sit for a long time to recoup. Rinse and repeat. haha

    Today’s accomplishment is that I walked on the dreadmill (that’s the treadmill for you normal people) for 15 minutes (very slowly) today. I absolutely HATE walking on the dreadmill! I freaking HATE that I have to do something that makes me out of breath to get stronger so that I don’t get out of breath as easy. It’s very counterproductive if you ask me. I’m not a fan of being out of breath because it can very scary when you feel like you can’t enough air in to actually breathe. When I get out of breath I put my hands on my hips, close my eyes, do what I call “the baby sway” (sway like you do when you hold a baby), try to center myself and not freak the F! It’s no fun at all. I’m not a fan. 10/10 do not recommend. If you’re wondering, yes, I’m allowed to walk on the dreadmill during my recovery from back surgery. The best thing I can do is walk in spurts to keep me active and keep the blood flowing. Boy oh boy, do I wish the surgeon said NO walking on the dreadmill allowed. haha

    My lungs took a hit because of surgery and not being active and limited. I did lung functions on my home spirometer a week ago and they were not great as I expected. My FEV1 was 27% which is down 5%. That may not seem like much but when you’re only working with 30% of your total lung capacity, it’s pretty significant. My baseline (average normal) is around 32%. It’s going to take some work to get my lung functions back up. Not that my lungs were great before by any means but right now I would take my crappy lungs before surgery over this whole getting out of breath just from squatting down to get something. It’s dumb I tell ya.

    I’ve held off on doing the vest so far because obviously the thought of something squeezing and shaking my back doesn’t sound like a lot of fun. Now that my incision is healed I might try it and just not buckle the bottom of it and see how I tolerate it. I can always stop it. Honestly, my lungs could use good shaking to get things moving. If you’re wondering if my husband could “beat me” (as in clapping on my back and sides, beating is what we called clapping since I was a kid), he could but I just haven’t had him do it.

    I think that about sums up how things are going. I see my surgeon at the 6 week mark, which is February 24th. I’m ready for these restrictions to be lifted. Most importantly, I’ve been able to drive for 2 weeks so at least I have that freedom.

    Until next time…

  • January…57 Days Of The Longest Month

    This post may end up being a rambling but I will make it make sense in the end. I have random things on my mind that I want to write about. Writing is therapeutic for me. Putting pen to paper, or key to computer in this case, helps me sort through my thoughts.

    January is a hard month for me. Seasonal depression (aka the winter blues) hit me every year. There are different types of depression. I’m the lucky winner of clinical depression, situational depression and seasonal depression. My depression is partly from genetics, partly from living a life with CF and partly from normal life circumstances. My depression is managed with antidepressants and talk therapy. I’m a big fan/advocate for talk therapy. It is great to have a third party person to talk about life ups and downs. They can help you to know how to handle things. They can help you understand why you are the way you are and why you react to things the way you do. I love my counselor very much! She is very helpful.

    January just so happens to be the month that my depression rears its ugly head the most. The winter blues hit me hard most every year. January feels like the longest month every year. After the hustle and bustle of the holidays, the cold weather settles and is here to stay (for longer than I would like), lack of daylight and the start of a new year. You would think January is a fresh start to a new year it would feel like a clean slate, so to speak, with only good things to come but my depression says “nope, watch this.”

    Nine years ago my mom passed away on January 19th. Now, I have the anniversary of her passing every January added to what is already a crappy month. It’s not like I don’t miss my mom other days/months because I do more than ever. It’s just that now I have the vivd memories of her passing in January. My mom was my biggest cheerleader. She sacrificed things she may have wanted to take care of me my whole life. My mom fought hard for me to have a normal childhood and life in general. Obviously, I was (and am) sick but she made sure that wasn’t my whole identity and I’m so thankful for that.

    Around the time of my mom’s passing 9 years ago, I had a pretty drastic decline in lung function and quality of life. I made it through traveling back to KC during the time of her passing. I was able to be there with her while she passed away. I was there to get her services planned and to handling her affairs and go through her things after she passed away. With that said, basically as soon as I was back home in Tennessee I was admitted into the hospital. This was also when I was first referred to be evaluated for lung transplant. To say I was overwhelmed with it all is an understatement, especially without my mom my biggest cheerleader by my side. Of course my husband was by my side for everything. I can’t put into words how thankful I am for him and how much I appreciate him. He doesn’t want any accolades for being a CFers husband. He always says, “I do what a husband is supposed to do. It’s doing what needs to be done for the person you love.”

    Being a CFers husband/wife isn’t an easy thing to juggle on top of normal life stuff like work, house, kids, taking care of yourself, friendships, etc. My husband prefers the term “CFers husband” instead of “caregiver” for the simple fact that he’s a husband whose wife happens to have CF. He does what a husband should do for their wife.

    I’m an independent person when it comes to my CF stuff like doing all my breathing treatments, managing all of my meds, going to doctor’s appointments, etc. It is hard for me to allow someone do things for me because if I’m doing it, I know it will get done when I want it done and how I want it done. Not type A at all. haha.

    Now onto more of why January sucks…as you know, I had back surgery 3 weeks ago (in January ugh). What was I thinking doing surgery in January knowing it is already a really hard month for me in general?? Well obviously I wasn’t thinking. I waited to do surgery in January so we could still go to Hawaii in November as planned. Also, I didn’t want to be laid up over the holidays with family visiting in December. So here we are.

    When I’m having “blah” mental health days, I try to find something to do to keep my mind busy. Usually, that consists of cleaning, organizing, doing laundry and/or running errands. Since I’m recovering from back surgery currently, I’m unable to do a lot of the cleaning and organizing that I love to do. Yes, I’m weird like that, cleaning and organizing makes me happy. I’m restricted from bending and lifting things which is obviously a primary function when cleaning and organizing. So guess what that means…I’ve had to just sit in my thoughts and “blahness.”

    Ok, I’m getting to the point of my post now. haha. When I’m having tough mental health days or “blah” days, as I call them, I tend to get quiet. When my mind is busy being “blah” so it’s hard for me to be my happy go lucky self. I’m then not in the mood to talk because my mind is in depressed mode. I’m the “reacher outer” in most of my friendships which means I text/call to say “hey, how are you today” or “just wanted to say hi because you crossed my mind.” It’s hard for me when I’m feeling “blah” and I don’t feel like reaching out. It reminds me how much I value my friendships. With that said, check on your friends who are “always” strong. I guarantee, the strong ones don’t always feel strong because I’m one of those strong ones. Don’t be afraid to check in if you feel like the strong ones are quiet. We, very much, appreciate being checked on. It shows how much you care and that you know we need a cheerleader too.

    I’m sorry this post was a little all over the place but that’s how my brain works. Wrapping it up with this…I survived all 57 days of January, barely. There were some very hard days, mentally and physically. I’m so thankful for the people who loved and supported me every step of the way. Check on your strong friends, the ones who seem to have it all together.

    Until next time…