I hope I can write this and let it make sense because it is all jumbled in my head…. It feels like a game of ping pong with my thoughts in my head. Hmmmm let me divide it into topics….hahahaha
Health: I called my CF clinic today because I have not been feeling great. My coughing fits are more frequent, lasting longer and don’t seem to fix my cough. hahahaha What I mean by that is, most of the time with a coughing fit, I cough my head off and it loosens up whatever it is that is causing the cough then I’m good to go for awhile. Right now my coughing fits are multiplied (one right after another….not one then done). I am also very wheezy, rattly and tight chested. I have been needing my oxygen more lately. Just walking through the store makes me very out of breath and to have coughing fits due to the struggle to breathe. I’m extra tired on top of it.
I went in for lung functions today and to give them a sputum sample. My FEV1 was actually up a smidge (4%). It is just marginally up. My numbers can have +/- 5% difference on any given day. Lung functions can be the tell tale sign of an infections/sickness but not always. There are many times that I feel like crap and my numbers look fine. There are also times when my numbers are bad and I feel good. I guess I’m just trying to say that my numbers aren’t the tell all as to how I’m feeling.
I will get a call tomorrow on what the doctor wants to do as treatment. My un-professional guess is IV antibiotics along with a prednisone burst for 3 weeks, as per my usual duration of treatment.
Life: This past week my best friend with CF was here visiting. Her boyfriend and daughter were with her as well. It was a great week of doing nothing but laying around enjoying each others company. While they were here, her boyfriend, put up a tile backsplash in the kitchen. I have a happy husband now. He has been wanting a backsplash forever! Flat paint doesn’t clean up splattered food all that well or at all. It helps to have friends with skills and discount deals for materials. We love the backsplash, thanks!
I have been missing my mom so much lately. I’m sure this anti-depressant med change isn’t helping the missing mom part of life. It still doesn’t feel real. I wanted to text her today to tell her what’s going on but then reality hit, she’s not there.
An opportunity arose for us (myself, my husband and son) to go to Hawaii to spread mom’s ashes. The reality of all of this is hitting me. We are going in October. I told my doctors that I need to be good to go health wise for the trip. If I’m going to Hawaii, I want to be able to enjoy it. I’m excited to see my family that lives there. It’s been way too long, since our honeymoon 6 years ago. Having family in Hawaii has its perks like a place to stay and a car to drive. Some people may think that lung fund money was used for this trip and I can promise you that is not the case. The lung fund is ONLY for medical purposes not for fun. I don’t know want anyone thinking we would abuse the lung fund because that is not the case. I am doing what my mom wanted. I am taking her to Hawaii and leaving her there where she wanted to be. We will be doing a “burial at sea” at mom’s favorite beach (the from here to Eternity beach) and then eating dinner at her favorite place, Duke’s. It is going to be an emotional time. It may feel like I’m leaving mom behind and I don’t know how I feel about that considering I still feel like it isn’t real that she is gone. It’s like she is just taking a long nap so I’m not texting or calling her until she wakes up. Ugh. This losing your mom stuff sucks big time. I want to be able to share things with her and just talk to her but I can’t. I’ll even go as far to say I want to hug her one last time but I would never let go.
No, we are not made of money nor are we swimming in it. We live paycheck to paycheck just like everyone else. I wish I could work to help with the bills. I hate that I can’t work. I miss working. I miss helping others. I mostly miss the paychecks. hahaha. We have debt just like everyone in the general population. If I could work I could help pay it down much quicker. That makes me feel worthless in this world. I would rather be working than having to take care of myself as my 24/7 job. One of the things I’m looking forward to after transplant is that I will be able to work again, eventually.
This has taken a turn, huh. hahaha.
Shannonigans Cornhole Tournament: 25 days away!!!! The raffle items are posted online at the Cornhole Tournament Facebook page. There is over $2,500 in raffle items. You can also sign up and pay on the Facebook page or at the day of the tournament.
Until next time…