Dealing with unpredictability has never been my strong suit – it’s too much like asking me to have Patience. Ask anyone who knows me… Patience is a Virtue that I simply Do Not possess 😉 I have to admit, I reeeeeally do like to know what I’m up against, and then come up with a plan aaaand then I wanted it all done and solved like, Yesterday! Even tho I may have only thought of it today… Make sense? I hope so 😬 Anyway, so having a kid with PH is a HUGE adjustment to My Life – haha. Yes, I know … of course it is for Mia too, but hey, please indulge me for a sec; this time we’re talking about me! 😘
Before I went back to school to become a Medical Aesthetician, I was the Activity Director in a Retirement Residence. Living by calendars, schedules and the clock was my 9-5 and Time was of the utmost importance – next to having a solid plan. Organizing people’s spare time and turning it into FUN … it’s just what I did! I often had Activities & Special Events planned well over a year in advance – What? It’s the only way I made sure that our Residents got exactly what I wanted – The Best! Of course I am able to Fly by the Seat of my Pants as well, and I am quite good at it… but living that way ALL the time? No Thanks – it’s too exhausting!
Anyway… back to the topic at hand. These Damn Site Changes take my kid from being a vibrant happy 10 year old who *almost* loves her life; to a child who is in so much pain it hurts to do ANYthing. Seriously. It hurts to move, and getting comfortable enough to actually get a the restful sleep she so desperately needs… is sometimes near impossible. How long does she feel this way? It’s unpredictable 😩 It’s been as long as 7 days and as short as 1. How long does a Site Last before it needs to be changed again? That’s unpredictable, too 😠. It’s been as long as 5 weeks and as short as 2 days. But Regardless… it’s never long enough 💔 and My Life literally stops dead it it’s tracks for up to a week with very little to ZERO advanced notice. How am I supposed to plan ANYthing when living life as a PHamily is so Unpredictable *Sigh*
I’m always looking for practical tips other PHers have had success with while using Remodulin via Sub Q. Tips for pain control, Site longevity, Coping Strategies for living with this horrid disease. Anything! I’m desperate to help comfort her any way I can. I feel so helpless. This one has been particularly hard. I wish she wasn’t allergic to Tagaderm and we could go back to the Cleo Sites. 😔