Every February 1st at 3:05pm CST my phone rings….but not this year. This is one of the first firsts without mom here, already. Mom would call at the exact time I was born to tell me happy birthday, it was her thing she did. I never thought it was weird that she didn’t call earlier in the day because I knew the call was coming. Some years she couldn’t wait that long and would say, “sorry, I tried to wait until 3:05pm but I can’t wait anymore. Happy birthday Gert! I love you!” Gertrude has been my nickname with my mama since I was a baby. She called me “gaggy Gert” because I would projectile vomit before we got the CF diagnosis and I got on enzymes for my digestive issues. “Gaggy Gert” morphed into “Gert,” “Gertrude,” “Gertrude La Rue” and almost anything that sounded good with Gert attached to it. It was cute and all until mom would yell, “Gertrude, where are you? get over here!” across a store when I was a preteen.
Today has been much harder than I anticipated it would be. I cried most of the morning. I miss my mom so much. I STILL feel like it’s just a matter of time before she calls or texts me back when she finally wakes up from her long nap. It has to be a bad dream, right? I’m kinda lost with not having her to text or call. I have great people in my life that are always checking on me but it’s different when it’s your mom that you want the calls and texts to be from. I miss her so much. I feel like I didn’t get to say “I love you” one last time before all of this happened. I believe she knew I was there in her last moments because when she heard my voice and my cough (of course) she turned her head and you could tell she was “stimluated.” All I could say was “I love you” over and over to her.
Some have said to me that they appreciate my openness and that I share all of it on my blog. Honestly, it is very therapeutic for me to be able to write out what is in my heart and mind. I know a lot of people aren’t that way but it is who I am. If it helps me to deal and heal and maybe even helps someone else then it is worth it. I know I haven’t gone through all that I have for no reason.
Today I am having more “sick person guilt.” If you aren’t a sick person then you won’t understand what I mean. Being the sick person who can cause stress, worry, schedule changes, etc is hard. We want nothing more than to not be the center of attention for these reasons. Don’t know why today of all days has been harder for me with this but it has. I’m working on it. My husband tells me all the time that we are in this together and he loves me and is right next to me fighting.
Now onto health update: The doctor came in this morning to see me. We are still waiting on the sputum culture sensitivities to show but I am growing the same strand of pseudomonas as the last culture and it is still heavy growth. Today marks 5 days on this IV cocktail. He said we will give it until the end of the week and if I am not showing any improvement we will reevaluate antibiotic choices and the possibility of doing a bronch. They know my fears of a bronch considering my last one ended with me on the vent for 12 or more hours because of my severe asthma and super sensitive and reactive airways. That is the last choice of treatment/care for those reasons. They don’t want to bronch CFers unless they have to as a last option. The reason to do a bronch is to get stuff sucked out of the bottom of the lungs and get cultures to see if there is other stuff growing that I’m not coughing out that we need to treat. I’ve been asked many times why they can’t just suck all the junk out. Yes, They can suck it out but my body is continuously producing super thick sticky nasty mucus so sucking it out will be a fix for a moment but it will be back with a vengeance.
I did lots of tests today. I had a chest CT, an EKG, an ultrasound of my heart, nasal swab (aka a brain swab, those things go way up there!) and blood work. I don’t know any of the results yet. I told the doctor that I didn’t want to go anywhere until I was feeling better and we had answers as to why the big drop in lung function and the crazy shortness of breath. He agreed with me. So when I said I’m in for the long haul, I meant it.
I’ll update when I know more about what all of the testing shows. Thank you for all of the birthday wishes.
Until next time…