SurvivingInfidelity.com^®

Hi friends, old and new. I haven't posted in forever, I have kept up with the regulars. I was sorry to hear of cancer diagnosis, Tush, disappointments, Whatsright, losing pets, Bigger, ongoing drama and continued strength Dragn! And so many more.
Life goes on, another wonderful grandson, and two more on the way. Me and Mr. Lionne getting older, travel is harder but we just get on with it, health is okay, just issues that need attention. We are really blessed, in general.
We still live in a larger suburban house, it's hard to think about downsizing, because we do love the garden. Finding something similar that's smaller is not happening. One son lives 15 minutes away, one 9 hours away.

But I wanted to vent a bit about the biggest issue we are facing. My youngest son has been (almost) diagnosed with a really rare, hardly heard of, disease. There are fewer that 900 people ever diagnosed with it. A google search is quite grim, predicting death within 3 years of diagnosis, but I discount that...It seems like there are too few cases to make that generalization. It's been a long journey even getting this close, and even now, he doesn't have QUITE enough of the mutated cells, well, there weren't enough of the mutated cells in the 5 biopsy sites that were sampled, to definitively say "Yes, he has this disease" and is therefore eligible for the gene therapy that may or may not help. Of course, had the sample been different, or just to the left or the right, maybe there would have been enough cells.

My son is okay right now, and I'm not going to borrow trouble. He's showing some of the symptoms, but not the worse. He is working with a large, university based medical team, and they are recommending PET scans every 6 months, a prudent plan.

But I cannot tell you how frustrating and upsetting this has been. It's required all of us (well, mostly me and my son) to do as much reading as we can, in order to be able to ask the right questions. And the frustration at the first (local) doctors who just wanted to ignore the manifestation of the original symptoms and just treat those symptoms is palpable. It feels as though several years are wasted here.

So, I just want to encourage any one of you with symptoms or with loved ones with symptoms that don't fit normal patterns, to be assertive. Don't allow yourself to be placated.

Dr. Google has it's limitations, but it can also be a source of strength! Doctors are only human...

(((((Lionne)))))!!!

From me, because I know I have no adequate words...

Except "Bless you and yours!"

Lionne! So good to see your name. Glad to hear you and Mr Lionne are doing well, but very sorry to hear that your son has this challenge ahead. The US medical system (assuming US here) is a challenge and that seems so unfair for those who are already dealing with health issues to have to navigate. Glad you are there to help you son with the obstacles ahead.

You know the SI mojo is here to send our power his way— hope he sees progress and great scans going forward.

Thanks for checking in! It’s so nice to get updates from the old timers :-)

it's hard to think about downsizing, because we do love the garden.

I get that, what with Mr. and Mrs Bigger being in a comparable dilemma. We have this great garden/patio and can’t imagine downsizing to a more manageable but immensely smaller with no garden condo. Even when they tout how nice the communal area might be.

Sorry to hear about your son. It’s a struggle.
I’m going to do something I hated hearing about when dealing with my youngest son’s condition (since full recovered) and that is to offer stories of hope...
My wife has an extremely rare disease that used to have a 3-5 year survival-span depending on discovery. However, just a few years before her diagnosis a new drug came to market that keeps the disease completely in check and even remission. My wife has been assured that it’s highly unlikely that this disease will be her bane.

So good to 'see' you Lionne. Happy to hear you're enjoying grandparenthood! My two cents on downsizing...

Ten years ago we downsized from a house with a yard/garden beds, etc. to a condo on some very unique grounds/property. I'd been the main yard caretaker and was just tired of it, no matter how much I loved the beautiful results. When we moved to CA, we couldn't find any condos that offered the same amenities we had in IL, which was out-the-front-door access to beautiful grounds of many acres that access many trails, easy access to bike trails, 1/4 walk to Lake Michigan, etc. So we went back to a house with the caveat that we would hire a landscaper to handle the yard, and I would expand the collection of patio pots for my garden of annuals and some succulents. But honestly, I still missed our old condo living conditions.

Fast forward to our move to MA, and we decided to go the house route again, but again, by hiring someone to do most of the yard maintenance. I have added a couple of raised garden beds so that I'm not on my hands and knees tending to vegetable plants. I do some annuals in areas where perennials have not filled in. But damn... I LOVE my hydrangeas!! It's sort of affirming when neighbors are out walking and stop to compliment us on the house renos we made, including the massive redo of our yard. But I do still miss our condo living situation - however that condo is not four doors down from our grandson who just turned three. And when we made the house renovations, we did so with the hope that it's where we will be able to age in place.

All this to say, there are some things we gave up by downsizing to the condo, but it really had some amazing advantages due to its unique location. Moving to different states in the last seven years forced us to declutter our house of things we really didn't need, thus simplifying living a bit more each time. So it just goes to show, staying can be good, but try to make an intentional effort as if you were truly downsizing - less clutter is a great feeling! But being open to other possibilities may just prove a wonderful adventure. Condo living opened up our lives to do things that we'd not had time to do before because we were obliged to do yard care.

I'm so sorry to hear about your son's health struggles. As Bigger says, new medical advances are being made every year and if they are telling him to return every six months, you don't know what would be available in a year. But putting myself in your shoes, I'd be terrified if one of my kids had that kind of unclear diagnosis. I wish your son well.

I'm happy to hear that you're doing well, enjoying life with H and grandkids. I'm very sorry to hear of your son's quasi-diagnosis - I wish him the best.

I like the benefits of fresh vegies, but not enough to actually grow them

I used to love our condo. Now a narcissist and a minion run this place, and it is bad and unnecessarily expensive because they are much less competent than they think they are. And they're nasty people to boot. Once when my W was on the board, the minion stood outside our door talking to my W, yelling (really), 'PETTY PETTY PETTY' because my W insisted that a proposed meeting was illegal because it did not have the notice required by Illinois law.

Meanwhile, the narc wrote emails to W that are so nasty W refuses to show them to me.

IOW, how about a tiny house on a normal sized-plot of land - reduced house maintenance with a big garden?

Thanks for the opportunity to vent.