Life

[Nuts]

Sooner, I'd love a get together. The FB ALS Widows group is doing one, but I'm just too busy on both ends of that trip to make it. I have actually booked two cruises...September and November!! Let's chat about a getaway...I think it's a great idea!

Sue, I realized why you mentioned your dad. I still felt bad about not being "here" for you at that time.

well, I got the first day of training done with Heidi on the invisible fence, but did not accomplish any of the other things on my list today. Oh well...there is always tomorrow!

 

[affected]

I got so little done in the first year - except gardening. I was so manic because that is how I dealt with the incredible grief.

I write lists and I rarely cross everything off them, just transfer them to the new list :lol:

Don't expect so much of yourself Becky, that's an order from Tillie!

No one can explain beforehand what it's going to be like on the 'other side'. Whatever it is, I can assure you it won't be anything like you expected. And it doesn't just take a few weeks or a few months.

Just breathing through a day is fine for now - anything more is a bonus. Set your bar that low and you won't have to battle ridiculous guilt on top of grieving the love of your life and the horror you have witnessed.

I'm so glad to see you here, this is home.

 

[Narrowminded]

Becky please don’t feel bad, you were doing what you felt you needed to do for you and that is so very important.

Sooner - I’d be up for a trip as well.

Hugs

 

[Nuts]

Oh boy, yesterday derailed early--although it was very cathartic. I have a old friend from my days being stationed in Japan. She is married to a Japanese gentleman and has been living there for decades. He had PSP, Para Supernuclear Palsey (spelling?), which is as vicious as ALS, for 10 years. He'd been in a hospital for 4 years, as homecare at that level is not available in Japan.

For four years she's been driving to the hospital every day after work to spend hours with him. j She spent at least 4 hours a day, 7 days a week with him. She did all his ROM and many other therapies. For a long time now he has been unable to move anything except a slight pressure in his hand, and he could not open his eyes. On a vent and feeding tube. So much like our PALS. Such a determination to live.

He passed away very recently,, and she finally had time to do a video call with me.

The tears rolled. What a harvest of souls. This was the first time I was able to cry openly with someone and we were both ok with it.

ok, time to get moving--today is followup training for Heidi, and I believe we will be able to take her off the lease in my SILs yard today. I hate putting the collar on her for the invisible fence, but this will make her it much easier and more pleasant for her to stay there while I travel.

 

[affected]

Sometimes you need someone who truly understand the loss before you can let go fully - I'm glad you could both release that together Becky xxx

Those invisible fences are amazing, Heidi will love it once she has learned it's boundaries

 

[Jrzygrl]

Becky,

Sorry to hear about your friend's loss, but good that you could "let it all out" with her. So nice to have those kind of friendships. I hope you are both doing OK.

We have an invisible fence for our dog too. Tillie is right, once Heidi has learned the boundaries, it's awesome! And don't feel bad about the collar. A friend of ours is the one who installed our fence. He explained that there is a tone, which is not audible to humans, that sounds when the dog approaches the boundary. Only when the dog goes past that boundary will they get the slight zap. The strength of the zap can also be adjusted and when done correctly, it does not hurt them, just startles them. Our dog is to the point where even if the batteries in his collar are dead (which they have been), he doesn't go beyond his boundary.

 

[Narrowminded]

Becky,

I’m so sorry for the loss your friend has suffered. I’m also thankful you both could let it all out together. It’s amazing when someone understands completely.

Hugs to you my friend.

 

[Nuts]

Oh, Spring is FINALLY HERE! My friend (who is also my next door neighbor) and I went to a local nursery, where they grow their own plants, and filled the back of my car. I'm so excited to get outside and work in the dirt!!!

My brain is still toast. My eye appointment was cancelled because the doc had the flue, so I called Friday to reschedule it, expecting to wait months. They had an appointment the next day, on Saturday! I was so pleased. And then I completely forgot about it. It was Sunday before I realized I'd missed it. Notes and calendars only work if you check them. Now I think I'm going to start having Alexa remind me of my appointments.

On the other hand, I'm feeling better physically. They weight is not coming off yet, but I'm stronger and have a lot less generalized pain and stiffness. It's astonishing what emotions do to our body. At my worst I could barely climb the stairs in my house. Seriously--I'm only 60!! Now I'm up and down them all day long with no problem. Let me have a "down" day though, and it becomes a struggle. WOW.

Yesterday I borrowed a friend's kayak and set off to the end of our (very large) creek to rescue her super huge unicorn float that had broken loose and floated away. It took me almost 2 hours because it was so large, largely deflated, and had a lot of water in it from rain. I thought I'd be in pain today, but I'm not!! I now have my eyes peeled for a good deal on a kayak. Maybe I can work the flab off of these upper arms...

Today I'm finishing the taxes and getting them ready for tomorrow's mail.

I still have to push myself out the front door, but it's getting easier and easier, and I'm spending more time outside. I now can't wait for the pollen to stop falling, and then the power washer and I have a date!!!

 

[Atsugi]

Re: Weight and emotions. Ditto here. Gotta keep moving, just keep moving, just keep moving. (Finding Nemo)

 

[soonerwife]

Digging in the dirt in the sunshine is one of my favorite things to do! Everything seems to be covered here in green pollen.

If only I could get the weight to come off!

 

[Jlynn]

Getting your mind right is first and then I think it's easier to lose some weight. Digging in the dirt on a beautiful day sounds like the perfect thing for healing and a step in the right direction. Easier said than done sometimes but Mike right. Ya gotta keep it moving!

 

[Narrowminded]

So happy you could get outside and work in the dirt. I did the same thing on Sat. Plum wore me out, but I managed to weed the side garden filled 2 bags. Looks much better and made me feel better too.

I’m still struggling with the weight too. We will get there.

I hope you were able to get another eye appt.

Hugs

 

[Nuts]

Yep, just keep moving....

I saw my PCP yesterday and described the memory issues I'm having, and she told me to back up to 20mg on the Lexapro. Much of the mental confusion I'm having, she says, sounds like depression. So, one step back so that I can take a few more forward.

I've finally gotten the title on the van and have it in the shop having a few last items fixed to sell it. My brother-in-law, who spent his life in the car business, is researching a reasonable sales price for me. Once I find out what a dealer would offer me, I'll make it available to our ALS community at that price. I can't find any like it on the market, to get a value from. This one is tough. I'm rather attached to it, and even considered keeping it and putting the seats back in. Silly me. A pull behind camper would be much more fun .

It's going to be another nice day today, so I think I'll power wash the dock. It seems I have a river otter living nearby who used it most of the winter as his toilet. UGH. Fishy poop. Yes, there is something worse than human poop.

Here's to one foot in front of the other...

 

[Narrowminded]

Becky you should know it’s all about the poop. LOL

I had to up my Zoloft a bit too. We will get there and right now we need help. There is no shame in that, we worked hard for where we are.

I too have to get Brian’s van finished up so I can get a dealer price as well. I cried when the WC left, not sure about the van.

I too have to move forward. Hugs my friend and know I am here for you.

 

[wishmobbing]

I am so over the the poop. I don't care who's it is, it's no longer my job.
Right now I'm at the most beautiful park I've ever been to in Porto, listening to a pond full of frogs and my friends on the next park bench changing their baby's diaper, haha.

Becky, don't rush the van. Maybe you feel like making a goodbye tour with it why not hang on to it a little longer.