LindsayI know last post I indicated we would discuss micronutrient testing this time, but I ended up having to cancel that appointment because I was sitting in the parking lot of the ER hoping I could lessen the severe neuropathic pain using gabapentin, since that’s probably all they would provide at the ER anyway, along with a $5k bill.
So, we’ll save the micronutrient discussion for another time.
Things have been somewhat unstable lately. As you know from the last few posts, I was in a lot of pain for a few weeks, then it got better and I caught a cold which turned into a sinus infection which turned into antibiotic-induced vomiting, all of which lasted for 2 weeks. Literally the day after all that nonsense went away, the nerve pain worsened again.
I have had to cancel a few trips to my hometown to see my mom, but I finally was able to book a last minute flight over Memorial day weekend. We scheduled an appointment for my mom with a hospice company, so I was getting on that plane if it killed me.
My mom is now officially enrolled in hospice. I have known for years that this day would come. She’s qualified for hospice for a while now. To be honest, we’re all amazed she’s even still alive.
But despite all that, there’s still something really hard about enrolling her in hospice. I guess because it means we have officially given up any treatments and will discontinue seeing her neurologist who is actually familiar with her extremely rare degenerative brain disease.
My sister and I expected my mom would be resistant to the idea of hospice. Similarly, in the past we expected she would be resistant to giving up driving, moving into an assisted living center, and using a wheelchair. For all of those events she was very open and willing. That made it much easier, but at the same time also made us realize we had those conversations much later than we should. I have said it a million times, but there’s no manual on how to do this, and to be honest, we’re not that great at it. But she always, ALWAYS knows that she’s loved, and maybe that’s all that matters.
I also recently discovered that a friend from grade school died, and in a violent manner. I’m having a tough time with that one.
I wish my health was better right now. I’m having a lot more heart rate variability than usual, regularly increasing 50-70 bpm when I stand. I’m never completely free of nerve pain, but it has lessened quite a bit. I’m so thankful for that, but I wish I knew why. I seem to be in this cycle where every few weeks it intensifies for a couple weeks, then improves. I’m constantly waiting for it to worsen, and I fear it will happen during my mom’s last days. The most important thing in my life right now is to be present, both physically and emotionally, when she dies. I hope the nerve pain doesn’t interfere with that.
I’m still working on a theory, which I will share with you soon. In the meantime, take care of yourselves, friends. And go give your mom a hug.
“A purpose of human life, no matter who is controlling it, is to love whoever is around to be loved.” – Kurt Vonnegut
Smell ya later.
– Linds
I’m really sorry to hear about your mom and health struggles. I hope you have better days ahead!
Thank you!
Sending hugs x
Best laid plans, eh. I’m so sorry you’ve been so rough and poorly. I’m glad you managed to make it back to see your mum, and that she’s now enrolled for hospice. I can only imagine how difficult that must be though, absolutely heartbreaking even when you know you’re doing the right thing. She’ll be better looked after there and I definitely think that your mum knowing she’s always loved is all that matters. She’ll know this decision is because you love her, too. The stress and upset over all of this won’t be helping with your health and pain, either. Perhaps now the hospice has been arranged you can take some time to focus on you, just to rest. I wish I could do something to help. Please know I’m thinking of you. Sending big hugs & lots of love your way ♥
And for your mum🌷
Caz xxxxx
Thanks, Caz. I’m hoping that enrolling my mom in hospice will help me worry about her less because I know she’s being well cared for. It was a big decision, but I think we made the right one.
I’m so sorry your mom is in the health she is and I’m sorry for you too, it’s overwhelming to say the least. I know for me, sometimes it felt like I was in a fog (this was before I was sick) and just getting from one point to the next. It sounds like your mother knows you two love her unconditionally and are doing your very best, that’s a very precious gift that not all people receive. Good to hear your nerve pain is doing better, but sorry about your HR. Stress seems to wreak absolute havoc on mine. I remember sitting in the vets office learning my dog had cancer and HR just dropped and I nearly fainted. Stress just causes everything to go wackado. Hoping though that yours adjusts itself. Sending you hugs.
Sending hugs and thoughts your way during this difficult tome Linds 💛
thank you!