I can’t believe it’s been almost two weeks since I last jotted anything down. Let me see if I can rewind and sum up the days.
The CellCept has been doubled and I added two more a day this past Monday to reach my final dose of 3 pills each morning and each evening, no real side effects and so far my blood counts have not been affected. PTL!!!:)
I had my follow up lung function test on the 6th but Dr V is out of the country so won’t really know the results until next week. Some numbers were slightly better while others appear to be worse. Got my portable oxygen concentrator yesterday, this should give me more freedom than the tanks. Still have the larger one for home but honestly I can’t tell you when I last had it on. I’ve learned to just pay attention and stop and rest if I’m getting short of breath. I’ve been able to bathe/shower, do laundry, cook, vacuum and sweep/mop without it! So the medications have to be doing something!
There are only two things that are still issues, my cough seems to be back but, we are also having air quality issues here d/t wildfires in Canada and I’ve been having some chest pain/insomnia the last few nights – I’m wondering if I’m low o oxygen in the night – I’m considering investing in a ring pulse oximeter that can track me at night.
On a more personal note all of my living siblings were home this past weekend. I am the baby of eight, two of our siblings have already passed. They were home to celebrate our Dad’s 90th birthday and our parents 70th anniversary!! It was a good time but again it just highlights the things I can no longer do. I couldn’t even blow out a candle 🙁 I’m also hoping that the gathering doesn’t make me sick, I should have worn a mask. But I also found a side of me that has never surfaced before – a “me” that is starting to not care what people think. I had purchased a beautiful sun dress for our SC/Georgia trip but didn’t wear it because it was “too much”, “too fancy for me”, “would attract attention”. But for the party I wanted to wear it because I didn’t know when OR IF I will every get the appropriate opportunity to wear it again so I told myself even if it is “too much”, “too fancy” or “attracts attention” if you want to wear it then do it – WEAR the DAMN DRESS!
Comments
2 responses to “June 8, 2023”
Ok, Carol….please keep this going; continue to share your experience. It helps you and everyone reading to understand or at least know exactly what’s happened; what you!re dealing with. The whole human experience is different for everyone & seeing yours strengthens everyone else’s who knows of it. Your courage already amazes those who know you & none of us see it all. I pray & know God is with you & will be forever. We love you & will be here for you. Each day is a gift for all of us & we best work at making them great.
Thanks Gary! Unfortunately, I stopped writing a journal after this entry but I will do my best to still convey how everything I have gone through has affected me. AND not just me, those in my life, who are on this journey with me. And thank you for the comment, I wasn’t sure if anyone was able to comment, I know people were reading as I’ve gotten confirmations other ways, so thank you for that.