• I can tell you now before I even type it up that this post is going to longer because I want to cover all the things…recent hospitalization, pulled chest muscles, rib popping, back and just how thankful I am to be alive!

    When you are a CFer (or any chronically ill person that’s in the hospital often) being discharged from the hospital is the best feeling! Being able to go home to all your things and your people is amazing. Getting settled back in at home is a step in the healing process to me.

    I have a really good friend that has a chronic illness (not CF) that said it perfectly today. When we get home from the hospital we get the “zoomies.” Why didn’t ever think of putting it that way!? It’s so true, at least for me it is. We’ve been cooped up in a small room, laying in bed most of the day for what seems like forever. So of course when we get home we may go into “do all the things I wasn’t able to do” mode. I know that’s me to a T. I’ve been that way since I was a kid, there’s no changing my ways at 45. I just go with it.

    Ok, now onto how I’m actually feeling. I have received many texts, Facebook messages and Instagram messages asking me how I’m feeling and if I’m feeling better yet…which I absolutely LOVE getting by the way! I love that people snag a few moments out of their busy day to check on me. Thank you for that!

    I am getting a smidge better each day. Remember that this me “getting better” thing is going to be a slow process. This isn’t my first rodeo, so I take the time I need and don’t rush it. I often feel like people get discouraged when I tell them I’m not “better” yet. I know they are just really wanting me better and over this hump. Trust me, I want the same exact thing. “Better” is a relative term though. Your “better” is most likely not the same as my “better” and that’s ok. The end goal is that I am NOT where I was when I showed up to the ER on Monday, March 31st. The answer to that one is…YES, I am definitely NOT where I was when I showed up to the ER. With how hard my asthma was hit this time around, it’s going to be a much slower pace getting back to where I was before all of this parainfluenza and asthma stuff showed up. We are doing a long slow taper off the prednisone in the hopes that my lungs won’t get angry and throw a tantrum. So far so good!

    With all that said, please don’t feel bad for me when I answer your question honestly of “how are you feeling” and “are you better.” When I answer “I’m not there yet” or something along those lines that’s just how it goes. Life with CF is ALL I know since I was diagnosed at only 5 months old, which means I have no other way of life to compare it to. I’m 100% ok with that! Simply saying, “I don’t know what to say,” is 100% the right thing to say. You don’t need the “right” words to say, there are no “right” words. Just saying that you wanted to check on me means the world. Please don’t feel like you to fix the situation. There’s no fixing, just existing in it and doing the thing.

    People often comment on how positive of a person I am in general. I’ve learned that being negative about the cards life dealt me does nothing for me. It will only keep me in a dark place of “why me” and that’s a mentally and physically draining place to live. I made the choice to live my life to the fullest for whatever time I’m given LONG ago. I’m living on borrowed time as it is considering that when I was born the life expectancy of CFers born in 1980 was late teens.

    I am just so thankful for the life I’ve been able to have with my husband and two bonus kids. There’s not a day that goes by that I don’t think about how lucky I am to have my little family (and HUGE extended family). I am truly blessed. When I share good things that happen in my life it’s only because I instantly think, “man, I’m so happy I am alive and get to experience these things!” I’m big on making all the memories in any situation and taking ALL the pictures you can (even if you never share them). One day the memories and pictures will be all that’s left and you will be very thankful to have them. I could go on and on about this topic but I won’t. I’m just thankful to be alive!

    HOW ARE ALL THE PULLED CHEST MUSCLES AND RANDOM POPPING IN THE LEFT SIDE OF MY CHEST DOING? The pulled muscles are so much better! That’s when my body decided to add “rib/muscle popping” to my bag of party tricks. I can’t remember if I shared about the popping feeling/sound that started before I went to the ER on my blog. There’s a few things the popping could be…it could have been a fractured rib but that was ruled out…it could be an intercostal muscle strain (pulled or strained muscle between the ribs) moving around…it could be intercostal neuralgia (inflammation or irritation of the nerves between the ribs). With all those possibilities as to why the popping showed up, I’ll just say that the popping feeling/sound are MUCH better. I do still brace my left side by pressing right where it is to keep whatever it is in place to help stop the popping. haha. Not to worry, I see the light at the end of the tunnel with this one as well!

    HOW’S MY BACK, YOU ASK… It’s great! Honestly, with everything else going on it’s kinda been on the back burner but not in a bad way. It’s been healing great and a non issue. As of Monday April 7th, all my NO bending, lifting and twisting restrictions were unofficially/officially lifted! Obviously, don’t overdo it and if something hurts, don’t do it. I’m not a dummy. haha. During this crazy time of being sick, I’m really only reminded of “operation evict Pete the peanut,” when I move/bend in a way where I notice tightness in my back OR when I lean against something with my left thigh (which is forever numb, never going to get feeling back) and it feels like I’m leaning again a big lump of something that’s pressing on my thigh when there’s nothing there OR when I get one of the good ol’ phantom pain zaps in my left thigh which have been almost nonexistent. So to answer the age old question, “how is your back is doing?”…uh why are you asking about my back?? Oh yeah, I had back surgery in January. haha. I just mean that it’s a non issue and doing fantastic!

    I think that covers everything. So as I like to say…

    Until next time…

  • The new week in lock up means a different attending/rounding doctor.

    The attending came to see me this morning. He wanted me to do lung functions to see where I’m at. My last set of lung functions were from my sick visit Thursday the 27th before going to the ER on Monday the 31st. My lung function was 26% and 28% at that sick visit. I did a bedside lung function this morning. All 3 tries were 27%, exact same percentage and liters every try. I’ll take consistent numbers at this point with how much my lungs have been through this last week. Haha

    The full CF team meets every Monday to talk about different patients cases. Today, I was a topic of discussion, obviously. Haha

    We have a plan in place y’all!! Are you ready for it? I’m going HOME tomorrow!

    Here’s the treatment plan going forward

    I’m going to continue IV antibiotics (Zosyn) at home. My last dose of Zosyn will be Monday the 14th. This will be a total of 14 days of the Zosyn. I’ll do my normal outpatient labs while on IVs.

    Next thing on the list…the prednisone taper. I did 50mg oral prednisone today. I will do 50mg for 5 days (includes today), then drop 10mg every 5 days with 10mg being the last step down.

    I’ll see CF clinic at some point after I finish antibiotics, maybe waiting until the prednisone is done. To be determined. I’m sure they will have me send in home spirometry (lung functions) once or twice while finishing out the prednisone taper.

    I think that covers all the things. I’m so ready to stand in MY shower with all that hot water blasting my very sore chest muscles for a very long time. Thank goodness we have a tankless water heater. Haha

    Until next time…