So it’s Monday.
My wife is off to work. She’s an amazing woman who has voluntarily chosen to work with the sickest and frailest little babies. She works in the Neonatal ICU - kids who, well let’s just say that at one point she had a 4 lb baby that she was caring for, and he was big. Check out https://www.spectrumhealth.org/patient-care/childrens-health/neonatal-care if you want to find out more.
Let’s just say that she’s been the rock that has held me and the family steady through my sudden “venture” into less than positive health and the after effects of that all. I could go on much more about the wonderful person I “married up” to, the wonderful wife who said “yes I would like to go see Raiders of the Lost Ark” with you back when we were juniors in High School. But I won’t.
Those of us who live in the US celebrate this Hallmark generated excuse to get us all to buy flowers and cards called “Mother’s Day.” And we were blessed to have both of the grandmas over yesterday too.
Rambling on - I read an article which said that Apple, in their iOS 12 version now have what’s called “Listen Live” installed in it. What’s it designed to do? Apparently it is designed to work with a set of blue tooth headphones and then be a hearing aid that uses your iPhone to filter out some of the distracting “other noise” that we all try to filter out but rarely do as well as we want to. I ordered a set of hearing aid sized blue tooth headphones for $29 (the ones recommended by the article) if you don’t want to spend the money for apple headphones. I haven’t had a chance to try them out - but I will and will report back.
Does anyone else have this? I woke up from my Embolization with a totally deaf left ear and that entire side of my head (from below jaw line to well above the ear) was numb. It has eased up some - but it’s by no means back to what it was. The two questions I had while thinkabout this:
- Does that numbness (is that a word?) contribute to or cause the times when my left ear and cheek look Iike I got a sunburn?
Is there a link between that and my headaches? If there is, I would expect that it would be a cause effect (headache, sunburned looking ) rather than the other way around.
The hearing that I have in that ear is very distorted - think transistor radio. While the doctors have said that nothing appears to be structurally wrong with my ear, what would cause the static?
When I was first diagnosed way back in 1978, I seem to remember hear a saying that went something like this - “this is not something a teenager should have to deal with.” Frankly, while are more dangerous and more life altering conditions out there, this is still something that teenagers shouln’t have to deal with. I was reminded again this weekend of the toll this can take on teenagers when one of their parents is struggling with an AVM.
What’s the best way you’all have found to keep in touch (or try to) with friends when it’s hard to “go out” and it’s hard to be in a noisy group and…… And……… There is so much that gets in the way - what do you find that works?
A little shameless self promotion mixed with “I hope this helps someone……” I wrote an article on my website (http://tomvanderwell.net/2019/05/10/hope/) about a gospel choir concert that I went to on Thursday at my son’s school. I think we could all use a bit more hope in our lives.
Referrals - trying to get in to another specialist to evaluate if there is anything happening between ears and brain or between eyes and brain. The main hospital system in our area tried to get me in to see one of their Doc’s who is educated in this stuff - and neither one of them are currently taking new patients because they are scheduled until January of 2020 - and apparently their computer system won’t schedule out that far! So, do I:
- Sit back and wait until either they call with a cancellation or we get to January of 2020.
- Try to find another doc out there - knowing that it would be 2 to 4 hours or more drive away.
- ? I don’t what any other possible courses of action there might be.
Finally (whew!), a question for you. Many of us are waking up this morning with not a lot to do - or not a lot we can do, and for many of us that makes the mornings hard. What concrete suggestions would you have for someone in your place who wants to be productive but is also really limited in what they can do?
My counselor and I have been wrestling with that question a lot.
And now it’s time to go do the exciting Monday morning household jobs - I get to do laundry!