Love my teams!

2/5/24 Jean woke me at 1am…he couldn’t sleep.  I could tell he was stressed - I’m sure worried he will fall back into that hell hole again.  He asked if  he should take a gummy (THC) and I immediately replied yes!  He used to take a half and now he doesn’t waste his time - the guy slept until just after 7am.  I’m truly so happy to see him sleep!  

Yesterday we saw cardiology.  Along with his FTD/ALS he was diagnosed with HCM (hypertrophic cardiomyopathy) in that first hospital visit in October.  Lots of younger athletes die from this - the valve in the heart is a bit longer than normal and when the blood flow is fast the valve blocks the flow so they medicate him to slow his blood rate allowing the valve to perform as it should.  Doc was happy to see how well Jean is doing.  The last visit he was in his sick phase.  That carbon dioxide was creeping into his system.  He does want to send Jean for a CT scan to be sure no damage was done to his hear/muscles/etc. but otherwise, happy enough he scheduled him out six months!  Also, asked us to let them know if any changes occurred, events like the hospital, etc.  I had never thought that the trio of doctors Jean sees for his heart, ALS, breathing would need me to contact them when something that big happens but I guess, how else would they know!!  

I am so grateful for the friends I have made and the ones I have reconnected with.  Sharing information important to the diagnosis!  Updated Power of Attorney, and if you haven't got an Advanced Directive, get on that now and bring it to your doctor's office for filing in the digital chart.  Jean's has a DNR (do not resuscitate) and I am so grateful the hospital staff asked me if they could intubate him and didn't just give up that day...otherwise, this blog wouldn't exist!  Here's a link to one, print and just fill it out!  Do this for me, and for Jean!!   Advanced Directive  Then please message me that you did!  When people say "if there's anything I can do for you", this is it...get your affairs in order so you can implement assistance if its for someone you love, but more so that your wishes are followed!  If you need an attorney, I have a lovely one, she's part of my team.   I have a team, they are amazing!   Financial advisors, Attorney, Accountant and then the medical trio team that we have regular visits with.  I also have friends with expertise in learning to live alone/on your own that bring me such peace with their advice and recommendations.  

Just over a year ago, when I thought we were headed to separating from each other, I started to look at myself as an independent.  How would I live, where would I live, what would happen with the house if we needed to go our separate ways?  I knew he wasn't with someone else, but he was disconnecting from me in a way I couldn't understand (until diagnosis: 10/29/24)  I had a checking about, I had my business, I paid a rent on a place I felt very boxed in and was losing my creative drive to make it something more.  I couldn't afford land or a new building to make the space I wanted.  I looked at my credit score and decided that was all based on my attachment to Jean's income as mine isn't as much as some think.  I needed to make some changes just incase Jean was ditching me.  I don't want to be in a loveless relationship, my breast cancer battle six years ago taught me about the time we have here and I wasn't just going to let it pass me by!  I started then pursuing ideas for places I could fix up but dead ends everywhere.  My mom suggested taking over her garage as she only used it for parking and now was retired so no reason to be parked inside all the time.  I promised a carport on the side for her and its still in process.  I started talking to contractors and if they didn't see my vision, they weren't part of my team.  I started with drywall, reached out to my amazing friend Lance for a quote.  He got me!  He saw what I saw and he and his brother-in-law Jim took it on!  I had called on vendors but Lance was well connected and had his own team for all of it and got it done!  My vision, my dad's handy work 50 years ago, my moms blessing and Lance and Jim made it all come together!  It's more than I could ever have dreamed of!  For those that don't know me or my story, my dad passed away in a plane crash 36 years ago.  Today would be his 79th birthday.  Watching my moms strength as she raised us through the super crappy teenage years is where I get the strength to move along through this all!  I actually feel blessed to have learned my lessons at a young age!  I choose my happiness and yes I have bad days and not everything goes as planned but while I'm here on earth, I want to be a blessing to people I meet!  Not perfect by any means but I try and that's what matters!   So HAPPY BIRTHDAY to my dad, Stanley Everett Stearns, Jr.  You are so loved and missed!  Thank you for my strength, Mom, as you continue to help Cody with the kids since the loss of Becca.   You're amazing!!

Off to check the social security site to see if I need to prepare myself better for retirement age!!  Watching all the numbers!  I'm happy to chat if you need me to suggest guidance on learning to live alone!  Especially my lady friends!  

Get your stuff together now!  Go!  

~kel