Narrowminded continues

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Re: Narrowminded continues

Post by Narrowminded on Mon Jan 08, 2018 9:17 am

Good morning all,

W30 day 1 meal 1 - breakfast scramble which generally consists of ground pork, sometimes seasoned as sausage, jalapeño, bell pepper, Brussels sprouts, onion, sweet potato (small chunk,prob about an ounce or two), greens this morning was kale Dice everything and sauté, in CO, then Cook two eggs sunny side up on top.   This is my go to W30 breakfast, so if you see scramble, this is it And coffee w/CO

We made it out of the freezer today, we are at 34 as I type this, with snow and sleet. As such my MIL will not be coming today.  I called and told her don’t even think about it. So I have the first load of DH’s stuff in the laundry.

When I’m done here, I’ll head to finishing up payroll and other work tasks interspersed with checking on DH and laundry. Should add nicely to my step count with all the running around thru the house.

I’d like to also ge the vac run upstairs and the guest bath cleaned, as our friend will be coming in sometime this week.

Plan to get my daily 10,000 steps and hopefully yoga a few times this week. Due to indiscretions in my diet, I will see how I feel over the next few days. Last year I hit tiger blood the first week because I had really almost started the whole week or so prior. This year well....

Also need to concentrate on my water consumption, it has been severely lacking lately. The weird part is I haven’t been thirsty and find myself half way thru the day realizing I haven’t had anything to drink since breakfast. I will be setting the timer on my iPhone as a reminder to check DH and get a drink at the same time.

Ok let’s do this!
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Re: Narrowminded continues

Post by perennialpam on Mon Jan 08, 2018 9:58 am

Cheers for your first day. Go you!
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Re: Narrowminded continues

Post by Narrowminded on Mon Jan 08, 2018 12:57 pm

Thanks Pam

Meal 2 - kale salad with carrot, bell pepper, olives, chicken, salsa and guacamole, a small pear and a sparkling water.

Doing better with water so far today. Step count at 3246, thought it would be more with all the up and down the steps.

Payroll is now complete, taxes connected to that will be done on Thursday. W-2 are in their envelopes as well. Still have to input bills and invoices for work.

Toilets in the powder room and guest bath are done, as is DH’s laundry. Some is hanging to get the last of the dampness, as I hate overdrying. Part is put away. Making progress and I’d better get back at it
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Re: Narrowminded continues

Post by Annieh on Mon Jan 08, 2018 2:03 pm

NM you are grokking hard! Great start.
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Re: Narrowminded continues

Post by Meant2Move on Mon Jan 08, 2018 3:12 pm

Sounds like you are off to an excellent start. With all that you do for the others in your life, it is really good that you are doing this for you!
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Re: Narrowminded continues

Post by Greensprout on Mon Jan 08, 2018 10:31 pm

Happy thoughts for your new W30/60/90 or wherever it ends up. I don’t have that perseverance.

Do you have a soda stream for bubbly water? Son #2 has one and we just started using it. Rather nice.
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Re: Narrowminded continues

Post by Narrowminded on Mon Jan 08, 2018 10:37 pm

Thanks girls

Meal 3 - Michelle Tam’s Meatza. That was really good.  Had a decaf w/CO after, but it didn’t hold me. Thought I had enough, so I had some walnuts and raisins.

I always give myself permission to snack the first few days, and after that I’m generally ok.

Finished up the work stuff that was here.  Never got to that bathroom or to the vac up there.  There is always tomorrow.  

However I ended up adding in shoveling the driveway and walk. The. After dinner DH needed me again for the same thing as yesterday. There went an hour.

I did get some eggs boiled for quick grab amd put part of the meatza in the freezer for other meals. I’ll have a slice with some eggs for breakfast tomorrow. I have liver thawing for dinner tomorrow night.

GS I don’t have a soda stream, probably should invest in one, but not sure how to get the fruit essence in there. I get the grapefruit one. Of course I could probably drink plain. Do you add any flavoring to yours?

Ok I’m exhausted
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Re: Narrowminded continues

Post by Greensprout on Mon Jan 08, 2018 10:44 pm

Just started using it a few days ago. No flavour for me, but could add a squeeze of lemon or lime fresh juice. I’m not into sweet beverages.
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Re: Narrowminded continues

Post by Narrowminded on Mon Jan 08, 2018 10:57 pm

GS the ones I get are not sweet either, just the essence, so I guess the juice would work
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Re: Narrowminded continues

Post by Narrowminded on Tue Jan 09, 2018 12:40 pm

What a day and it’s only half over.

Woke at 5:30 to my smoke alarm asking for a battery. Well at least I thought so. The first i me i growled and waited to see if it would go off again. It did, so up to get a ladder and battery, and then attempt to figure out which one it was. While getting the tools it went off again. As soon as I had everything it stopped and hasn’t gone off again-weird. I attempted to go back to bed, but sleep was over.

Then when I took the dog out, didn’t see the black ice on the driveway and down I went. Probably a bruise later and my hip doesn’t like stairs, but no worse for the wear at the moment.

First 2 meals for today are good and in the books.

Have a great day all, and for those having a bit of a warm up, watch put for the ice.
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Re: Narrowminded continues

Post by Meant2Move on Tue Jan 09, 2018 1:06 pm

Dang, sure hope a bruise is all you get.

What is it about fire alarms that they seem to only need a new battery in the middle of the night???
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Re: Narrowminded continues

Post by ONTARIO on Tue Jan 09, 2018 1:58 pm

Oh, dear! That is a crappy start to a day. Ugh. I hope your hip is okay.

I hope your day improves. I think it might call for a nice, easy day and a cuddle with the dog.

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Re: Narrowminded continues

Post by Heuristicfireflower on Tue Jan 09, 2018 3:38 pm

Oh no. Glad the fall didn't incur more than a bruise.
Good going on the Whole30 strong start. I'm not doing Whole30, but, am with you on firm habit changes in my diet, as well.
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Re: Narrowminded continues

Post by Narrowminded on Tue Jan 09, 2018 7:20 pm

Dinner was Liver and onions, coffee w/CO. Day 2 of whole 30 complete

Well, unfortunately due to DH, couldn’t take a rest day. Had to get him bathed etc. Then had some work, work to do. Plus some cleaning for our friend who is to come this week

Well he called around noon and was on his way. Got about 2-3 hours away, had driven 4 when his neighbor called about water in his house. He turned around and headed back home. May see him tomorrow

When DS got here I headed off to Walmart for things I needed and picked up a bunch of 9v. Then DS and I changed all the smoke alarms, I’ll put a reminder in my phone to do them July 1. Hopefully issue solved. And yes they do prefer middle of the night failures for some odd reason.

I’m struggling a bit today and am surprised I held strong at Walmart. DH and I were discussing Stephen Hawking as his BD came up on my feed. He’s had ALS for 54 years. I asked DH who cannot move and is bed bound if he could imagine living another 40 years as he is. He smiled big and said he could. I asked if he really thought he could and he said yes. I told him. He’d better start looking for a younger model as I won’t be able to do this in my 90’s. We are 55 now. I told him I’m wearing out now.

What gets me down is longetivity runs in his family, and he’s already cheated death at least 3x since his dx. He survived a really bad bout of pneumonia in which the Drs wanted to call the chaplain. Then he survived sepsis, where he was out for 3 days. 2 other pneumonia’s in there and then this past April he was out for 5 days. He went tachy and stayed that way for 5 days refusing food and water other than for his meds. Finally they tried a beta blocker since he was still here and boom, his ship righted itself and he’s back to where he was, maybe even a tad better, if you can be.

So, I think you can see my concern about dealing with this monster for that long. We are already at 13 years since onset of symptoms. When he finally got his DX he said he was going to fight this and beat it. I don’t know about beating it, but maybe outliving it so to speak

I love my husband but I’m tired, I’m worn out and the thought of this never ending, well it’s hard to take.

Off to relax a bit as soon as I finish up here
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Re: Narrowminded continues

Post by Greensprout on Tue Jan 09, 2018 9:27 pm

<<hugs>>

That is tough, hard to put myself in your place. Yet you persist and carry on. Make sure you fit in some self care when able.
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Re: Narrowminded continues

Post by Pedidoc on Tue Jan 09, 2018 10:37 pm

IMHO You need some respite care. My aunt had ALS. It wore her family out. I'm glad your DH is so positive, but you need some time to recharge. Is there anyone who can help with DH for a couple of days so you can have some recharging time?
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Re: Narrowminded continues

Post by Greensprout on Tue Jan 09, 2018 10:40 pm

Pedidoc wrote:IMHO You need some respite care. My aunt had ALS. It wore her family out. I'm glad your DH is so positive, but you need some time to recharge. Is there anyone who can help with DH for a couple of days so you can have some recharging time?

Agree with the Doc. Must be some local resources?
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Re: Narrowminded continues

Post by marcadav on Tue Jan 09, 2018 11:20 pm

NM, I can't get on a ladder to change smoke detector batteries so I bought longer lasting (7-10 years) batteries for all my detectors. That way they don't do the "change me chirp" all the time. I also don't have to ask someone to change them for me on a regular basis.

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Re: Narrowminded continues

Post by Rig D on Wed Jan 10, 2018 6:31 am

I've been following your story for a long time now and honestly don't know how you manage with the things on your plate. Your DH situation is unfathomable. I had a college friend who died from ALS, he made it only 2 yrs or so from his DX. DH is amazing that he's made it so long.

I also agree with Pedidoc, have said so before and hope you can figure out a way to get that "me" time.
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Re: Narrowminded continues

Post by perennialpam on Wed Jan 10, 2018 7:35 am

I am glad you feel comfortable to share your thoughts and family issue here. In some ways I hope it helps you relieve some of your stress by being honest about your situation.

As everyone mentions we hope for you to find some "me" time but do not know how to make suggestions about that.

You are in our thoughts and prayers for some relief. Take care NM.
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Re: Narrowminded continues

Post by Meant2Move on Wed Jan 10, 2018 12:59 pm

I too can scarcely imagine your situation. It must have been difficult to write that - I admire your honesty. (((Hugs)))!
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Re: Narrowminded continues

Post by Narrowminded on Wed Jan 10, 2018 2:14 pm

Thank you everyone. I try to always be open with the situation here as it impacts everything I do. It gets complicated by the fact that the business we own, DH refused to teach me when he was DX. I’ve always done the books, but I really should know more about it. It’s hard to do the books and try to keep an eye on things from here.

As to respite, I get a small stipend from the local ALSA, that affords me about 2-3 days a month for a nurse for 8 hours. I try and keep enough of an amount to afford 5 days in a row of a nurse so I can go visit my GF in FL for a week. That’s my respite once a year. Really need 2x a year but can’t afford that.

When heading off to grad school this year DD set up a go fund me. Due to that, I now have a nurse once a week and will def help with my planned “spring break”. I just have to work out when DD will be home, so she and DS can help the nursing for me to go. Both kids are awesome in that regard. However, I’d love to be able to do a family vacation once again.

I know for a fact, if DH had not chosen to vent, he would not be here. He would have maybe made another year from the time he vented, if he had not. At that point he was still going into work in his WC, learned to drive his WC van and only needed transfer help on and off the commode. However his breathing was getting worse and worse. The Dr suggested the vent, he gave it some thought and decided yes, he wanted to do that. So he was trached, vented and had a feeding tube placed all at the same time.

Slowly after that, he lost more and more abilities, and finally a few years ago lost his ability to talk around the trach and his ability to eat by mouth. So he has tube feeding running around the clock. For a long time I was making his food as the canned stuff is really a bunch of junk with vitamins tossed in for good measure. We had to go to that when he could no longer tolerate larger amounts of food, and what I was making would not go thru the machine and would require too much volume to get it thin enough. That was last April.

The struggle I have with help is his vent. I have to have a licensed nurse when working thru an agency. Hospice here will not take you on with a vent unless you want them for a death wean, and private insurance no longer covers private duty nursing nor does Medicare. We also do not qualify for state waivers due to income being slightly too high and even if we did, most won’t apply if you are on a vent. So the whole reason I need help is exactly the reason I can’t get it.

Before DD left for school I would get out for a 30 min walk each day and she would be here to help a bit. Now my walks are mostly around the house. DS is here 2 afternoons and all day Fridays. He puts me through a TRX WO. 2x a week and I run errands.

This place and the ALS forum I am on are just my connections, my me time. Friends leave, so even if I had the time for a girls night out, I would not have any girls to go with.

This is why, while I love my husband, I don’t think I can manage many more years of this. It’s hard when you think this is the time we should be traveling, doing all those empty nester type stuff, and instead we’re stuck here doing nothing much at all. I fear that I’ll never get that chance. What scares me most is grands coming one day and not being able to watch or keep them here.

Ok enough sappy stuff. It’s my life, I put on my big girl panties and deal with it.

On a good note, had my scramble for breakfast and not hungry for lunch, so some sparkling water and olives it was. Will probably have an early dinner.

I’ve gotten done a good amount of work stuff and I have a nurse coming tomorrow. I plan to get out of here for a bit.

Our friend is on his way, so he will be here prob around 10 or so.

Off to get some steps in.
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Re: Narrowminded continues

Post by Pedidoc on Wed Jan 10, 2018 3:45 pm

You are an amazing woman NM!!!!
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Re: Narrowminded continues

Post by Greensprout on Wed Jan 10, 2018 6:19 pm

Nothing but respect coming from me to you. You truly are amazing. None of us would turn our back on a partner/significant other, but this goes well beyond what any of us might anticipate having to do, Hugs.
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Re: Narrowminded continues

Post by Narrowminded on Wed Jan 10, 2018 11:38 pm

Thank you. I often joke about the vows for better or worse, in sickness and in health....

W30 day 3 in the books. Dinner still ended up about usual time, had lover and onions again with a pear. Also some raisins and walnuts in there for a snack.

Shoulder and hip are a bit cranky tonight, but not unexpected.

Night all
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