- Joined
- May 1, 2007
- Messages
- 3,367
What a lovely post - thanks for touching base and the catch-up. Three teens will do it to you, for sure! I'm sorry for the 'heavier stuff' you've been carrying lately, and hope it moves past you and leaves you in good health and peace - both you and your family. And bling fixes are always a good thing, I think.
My Crohn's disease, tho improved since I started on Humira, continues to give me stick. I'm doing what I can to keep my head above water, but it's a lot of work. My back, too, which I had operated on 17 years ago, has been having a rough go of it, and I've been recommended for spinal fusion. But my insurance has turned it down twice because I haven't tried steroid injections - which I *can't* do, due to their effects on my blood glucose. So they're demanding something I just can't do. Thanks guys. Awesome. 2.5 years ago it was cancer (6 monthly check up on Monday - always terrifying), and some weird inflammation thing in 2020 that has left me with scaring in my stomach and off-the-charts acid, which is, quite literally, a pain in the gut. So it's a lot and it's basically been illness and intermittent strong pain for about 3 years now, which is exhausting and, in turn, sets of my Crohn's - and round and round we go. But I can do gentle exercise (and do), 6 times a week, I still live a normal life, and recently leased a beautiful townhouse in California to get me out of the MA cold and into the Cali heat, which is good for my Crohn's. So I go back and forth between the two - which I love, because I have friends and my God-kids in LA and I love the weather - and also hate, because it takes me away from my DH and my dogs, and the regular relocation, which can make me feel a tad disorientated.
But as a woman I once knew said to me - "It could be worse, Mrs-B, we could be ugly." Or even worse - I could have ugly jewelry! Wouldn't *THAT* be awful! So, on balance, I'm a very fortunate woman and more than content with my lot in life. Thanks for checking in and asking after me, and I still think regularly - both of you, and of the gorgeous ring in your avatar!
Thank you for your kind words and wishes! And heck yes, bling fixes are a fantastically good thing! They keep me going... especially when they are as exciting and gorgeous as PSers'... yourself top among them!!
Dang. Any one of the challenges you face would be hard to bear. I am sorry you have been handed so many! With a bunch of catch 22s thrown in for good measure, like the insurance (Whaaaat? Insurance is so far from what it used to be. It makes me very sad these days, I know too many people not getting proper/effective care that is right there... but insurance is calling the shots, not the patient, not the health care providers. It's not right.).
Your place in CA sounds wonderful! It's wonderful that you have that! I imagine being near your God-kids and CA friends is amazing for the soul, though I hear you on missing your DH and pups. We have a place on the Cape that is my retreat where I can count on recharging. Sometimes I go alone and while it does wonders for me mentally, emotionally, and physically, I do miss my best-buddy DH and one kitty in particular who is my soulcat. How do you find the flying with your back and the Crohn's? Is it painful or uncomfortable, or do you do ok with it? Weather can be such an interesting player when it comes to our bodies and our health. I bet CA is amazing in that regard, as you say. Just the change from NH to the Cape, subtle as it is, has a noticeably positive effect for me.
Our youngest has a somewhat rare inflammatory autoimmune syndrome. She started having symptoms that required hospitalizations when she was three years old. She was seen at MGH for a couple of years - her GI suspected Crohn's and most of her symptoms presented as such. However there were a couple of symptoms that didn't line up. He was conservative with diagnosis and treatment (which was perfect for us as we were the same) and sent her to a rheumatologist to rule out the autoimmune syndrome I have (my symptoms are entirely different from hers). The rheum was set to go on vacation and squeezed us in as a courtesy to him, but she was dismissive and quick with us, so nothing much came of it. Fast-forward another year, us trying the SCD to no avail, and more tests and hospitalizations and he finally suggested we see rheum at Boston Children's. We did, and within minutes of me mentioning my syndrome, the two doctors there looked at us and said absolutely that's what she has. It's even more rare for it to present the way it does in her, but they have seen it and there was no question. At that point we were finally ready to say yes to Remicaid and methotrexate (scary to put anyone on, much less your five-year old!) and once she started, she has been SO good. Like, healthier than the rest of us nearly! I wish that were your experience too, with Humira. (At the time that was the only other option for treatment, and it wasn't approved in children yet. I think it is now?) All that to say, I am somewhat familiar with the pain and suffering you are in, some of the challenges you may have faced, and I feel so much for you! There was very little quality of life for her when she was yet untreated, and it was an hourly struggle. I am touched by how spirited you are, how much you embrace life and all of its joys.
Heehe, your friend is awesome. Perspective, baby!