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Post by empress of self-improvement on Feb 20, 2020 13:07:25 GMT -5
It is always amazing to me the hoops good employees have to jump through. The number of times I see people because their work requires a note if the are out is ridiculous. It wastes my time, and these nice patients are apologizing to me for having to come in. I always ask them how long they want to be out. Your husband is doing what a lot of patients do. They only want family or don’t want anyone else in the house. I know they are the sick one, but the burden they put on their significant other is real and unnecessary. And, although it pains me to say it, it’s usually men who are the culprits. OH MY GOD!!! You have no idea how right you are with men being sucky patients. DH absolutely refuses to allow anyone who isn't me to do anything for him. One of these days, I may run away for a week and sic one of his brothers on him. If only!
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pulmonarymd
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Post by pulmonarymd on Feb 20, 2020 14:54:36 GMT -5
It is always amazing to me the hoops good employees have to jump through. The number of times I see people because their work requires a note if the are out is ridiculous. It wastes my time, and these nice patients are apologizing to me for having to come in. I always ask them how long they want to be out. Your husband is doing what a lot of patients do. They only want family or don’t want anyone else in the house. I know they are the sick one, but the burden they put on their significant other is real and unnecessary. And, although it pains me to say it, it’s usually men who are the culprits. OH MY GOD!!! You have no idea how right you are with men being sucky patients. DH absolutely refuses to allow anyone who isn't me to do anything for him. One of these days, I may run away for a week and sic one of his brothers on him. If only! Men are generally stupid when it comes to health. Married men live longer because their wives take care of them like they are children at times. Comes with the whole idea of being male I guess. I had to learn my lesson too! But I am responsible for making all my doctor appointments and getting all my tests done. It isn't hard, but it requires a realization that we aren't bulletproof, and admitting and accepting help is not a sign of weakness
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Post by empress of self-improvement on Feb 20, 2020 15:21:37 GMT -5
Oh I hope he doesn't live longer because I'd have to kill him. Sadly, for my DH, I have to make his appts. because he has cognitive issues from the MS and can't remember his head from his ass. Yet, he will come out with some random memory from 20 years ago! I just don't get it.
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pulmonarymd
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Post by pulmonarymd on Feb 20, 2020 15:25:00 GMT -5
Oh I hope he doesn't live longer because I'd have to kill him. Sadly, for my DH, I have to make his appts. because he has cognitive issues from the MS and can't remember his head from his ass. Yet, he will come out with some random memory from 20 years ago! I just don't get it.Memory is a strange thing, but when people have cognitive issues, they have difficulty forming new memories. Older memories are already there, so they come out from time to time. Sorry about your DH. These are the toughest things to deal with, one reason I am not a Neurologist
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azucena
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Post by azucena on Feb 20, 2020 15:31:28 GMT -5
Surgeon appt today - waited an hour past our appt but what can you do. Recovery on track. DH has officially lost 25 lbs so current weight is 150. That's okay if he can maintain and stop losing but scary for both of us given his past history with scary weight loss. His appetite doesn't seem to be increasing much, but the dr said to give it another week.
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finnime
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Post by finnime on Feb 20, 2020 17:12:30 GMT -5
Glad recovery is on track, azucena. Hope his appetite comes back.
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azucena
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Post by azucena on Feb 21, 2020 5:11:37 GMT -5
3 am and I cant sleep which sucks since I need to work at least 6 hours tomorrow, attend therapy which will wipe me out, and then coach a 7 pm tournament game followed by a 9 or 10 game tomorrow morning.
I was sleeping well and then DH needed help finding a dry tshirt in mt laundry since he sweated thru and cant bend down to pick thru the pile
I agree with earlier posts that men can be the worst patients but he has been a saint. And its things like tonight that I cant hire out. Or bathing him on the days he cant shower...i wouldnt want a stranger giving me a sponge bath either. Remember marriage vows are in sickness and in health.
And while I appreciate all the compliments and well wishes in this thread as they are helping me keep my spirits up. I feel phony since I havent talked about how much his illness has cost us in our marriage. After he got better, we have had a rough time adjusting back to normal life. I'd been a caregiver for way too long which meant going it alone, making virtually every decision, and this has not played out well with my type a control freak personality. I have a tough time turning it off and treating him as my equal.
At the same time, DH is by nature way more carefree and his illness has definitely stunted his personal growth in that by basically missing his 20s, he is kind of stuck there in that mentality with things like dungeons and dragons and an obsessive gaming hobby. It often feels like he chooses these over me and the kids and it has caused a ton of conflict. He values his free time because it was so rare meanwhile I tend to pour my entire self into our family and work and end up empty. As I worked thru therapy and started to be aware of carving out time for myself on a regular basis, we have really bumped heads because it feels like he uses it all up for himself and then some.
We have lives thru periods of months at a time feeling like roommates. If we both werent so stubborn I have no doubt we would have divorced a long time ago. But we made a pact day one of our marriage that the d-word is not an option - infidelity or abuse being the exceptions but non-possibilities.
We struggle with having a parent-child relationship. He is more than happy to let me take the reins and I easily step into that and it works until it doesnt and one of both of us end up resentful.
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azucena
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Post by azucena on Feb 21, 2020 5:23:56 GMT -5
Frankly being able to fall into those roles is what has helped us survive this illness but at the same time it is our biggest curse and something we will have to work our way out of again.
Take for instance this extreme weight loss. In watching it happen, I've already been controlling his food like a parent would. Yesterday he wanted a muffin for breakfast and he would have eaten half and been full. What nutrition is in that? So I wouldnt stop at the store after taking the kids to school so instead I gave him chocolate milk using ovaltine and fried up 3 pieces of ham which he barely managed to finish.
When i told the surgeon i was concerned about his weight loss, he told DH to drink 2 to 3 ensure or boost a day. Well DH just wont do that and in some ways I dont blame him, they are nasty. But I also want to kick him for not sucking it up and giving 100% to getting better. I cant nag him to do it though but damn if I wont sneak one into the next smoothie I give him (along with my new secret weapon of frozen avocados).
Thru all of this our intimate life is screwed up too. When it's good its great. When its not, its non-existent.
And DH is currently balking at therapy because it feels like one more to do right now which I can kinda see. But hello, I'm trudging there tommorow to attempt to keep working thru this.
Poured all that out but none of it is a dealbreaker because I do love him and we are a powerful team. During the very first bout of this, he attempted to push me away and even said run away, no one will blame you as this isnt what you signed on for. I said no and truthfully never considered it.
Halfway thru hospital stay this time, he looked at me one day and said I'll give you and out and take all the blame. I said no way I'm in this still as you would be for me.
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azucena
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Post by azucena on Feb 21, 2020 5:35:31 GMT -5
No wonder I cant sleep lol.
Today in the car, it came out that dd7 in overhearing my frustration and seeing me cry earlier this week about losing pto and having to work more than expected....well he 7 yo brain translated that into me losing my job. Facepalm!
She was clearly upset then and it was clear that she got how screwed we would be if that were true. I set her straight and made her promise to speak up if she was ever worried about grown up things again. My poor baby. She was worried about upsetting me more if she asked questions. I said do it anyway because thats what mommies are for.
My bad for being transparent with dd11 when it was evident I was crying. I have an unhealthy habit of stuffing my feelings that I already see in both of them so I try to model better. Dd11 did understand my frustration about losing time off and I even talked her thru how we could easily weather being unpaid because we are careful to save. She didnt know little sis was upset either.
Will have another talk with both of them in the car to school.
Also DH commented yesterday that dd11 has been distant with him. I hadnt noticed but watched for it tonight and he is right. He was trying to ask about her bball game tonight that he missed and she wasnt having it. Then he asked about her bowling field trip that happened right after he got home and nothing. And it was more than tween angst. Will have to find a good time to talk to her this weekend.
Dd7 has been reading to both of us at bedtime. And she has "watched daddy" and fed him salami or pbj when dd11 and I have had games. Dh is independent enough now for that to work. Plus they sneak in some video game time which is a rare treat that I've successfully made him keep from the kids so far - thats not an obsession I will allow.
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azucena
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Post by azucena on Feb 21, 2020 5:36:15 GMT -5
Its been an hour - going to try to sleep now. Hope i get two more hours in.
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buystoys
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Post by buystoys on Feb 21, 2020 7:57:33 GMT -5
Hugs to you! I wish this time weren't so difficult for you, but you probably already know that. I admire your strength in handling what lie has thrown at you. You are a very strong person and that is admirable.
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finnime
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Post by finnime on Feb 21, 2020 8:04:53 GMT -5
The dependency of my DH in our partnership took a toll, too. It still does at times. I remind him to take meds, to not fall(!), watch what he eats, etc. I also assume responsibility for most of the household tasks. It's a problem we're working on. Therapy helps us both. My DH is 10 years older than me, too, so some age-related slowing down is also contributing.
My DS (DD was living on her own by then) was strongly affected by his stepfather's health issues. I remember he even posted on Reddit a question about advice for weight gain for DH. Got some good tips, too. I wish he had not had to add that to his usual adolescent strife, though. I seem to remember him being standoffish for periods, but just figured that was typical of his age then- 14-18..
I'm glad you have each other.
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Wisconsin Beth
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Post by Wisconsin Beth on Feb 21, 2020 9:01:47 GMT -5
I hope you got more sleep.
Have you thought about giving him some kind of sports recovery drink? I know my DH likes the Kill Cliff brand. It's not necessarily calories but will help with vitamins, etc.
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Feb 21, 2020 9:35:41 GMT -5
Try pediasure shakes. When I was pregnant the OB got it in her head I'm tiny on purpose via restricting calories.
She wanted me to drink ensure which I agree are freaking nasty.
Pediasure cost less and tasted much better because they are targeted to kids. I found them easier to digest too.
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azucena
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Post by azucena on Feb 21, 2020 10:01:56 GMT -5
Looks like Kill Cliff, which I'd never heard of, is carbonated which he is supposed to avoid for now. Extra gas is a no-no while intestines heal - otherwise great idea.
He is doing a gatorade daily as well as a v8 tomato juice which he hates but ostomates know that it balances electrolytes faster than sports drinks. It's a tiny can so down in two gulps.
I'll look up pediasure shakes. I got busted for using pedialyte powder in a gatorade bottle last week. DD11 didn't know I was hiding it and outted me so now he's suspicious LOL.
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azucena
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Post by azucena on Feb 21, 2020 10:03:56 GMT -5
I killed the alarm to catch another hour of sleep and took the girls in an hour late to school. Thankfully they have been understanding.
Got the largest starbucks coffee this morning and a sausage egg sandhwich for when DH wakes up.
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Wisconsin Beth
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Post by Wisconsin Beth on Feb 21, 2020 10:54:54 GMT -5
Looks like Kill Cliff, which I'd never heard of, is carbonated which he is supposed to avoid for now. Extra gas is a no-no while intestines heal - otherwise great idea. He is doing a gatorade daily as well as a v8 tomato juice which he hates but ostomates know that it balances electrolytes faster than sports drinks. It's a tiny can so down in two gulps. I'll look up pediasure shakes. I got busted for using pedialyte powder in a gatorade bottle last week. DD11 didn't know I was hiding it and outted me so now he's suspicious LOL. Yeah, I wondered about the carbonation factor. I know my Mom used to let soda go flat before giving it to us when we were sick. Also she gave us liquid jello. She'd made jello and let us drink it warm. Soothed the throat and it didn't matter if it sat around and got hard. Damn, I loved being sick just for the hot honey drinks and the liquid jello. lol. Sadly, my kids find liquid/warm jello gross.
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azucena
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Post by azucena on Feb 21, 2020 10:59:20 GMT -5
ooo - letting it go flat is an idea. I'll see if I can find it next time I'm at walmart or target. When I went two weeks ago, I browsed the aisles looking for anything high protein and high hydration and came up with some interesting stuff LOL.
There is a packet of beef sticks high up in the fridge that he walks by and grabs. It has to be up higher though or the kids will devour them in a day.
I'm less worried about hydration now since his output has leveled off and he seems to be drinking enough to keep up.
Today's task is to figure out Feb bills since it's payday. I feel like we have had too much money leftover so I fear that something hasn't been getting paid. DH usually does the bills, and I've been asking him and collecting a pile of bills from the mail, but I still think I'm missing something particularly since we are eating out every day and I've been spending whatever at the grocery store picking up exactly what he requests if I think it will help.
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azucena
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Post by azucena on Feb 21, 2020 11:00:39 GMT -5
Surgeon cleared him for a massage, so I need to get that set up for at home next week. Will be something for both of us to look fwd to and so needed.
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Post by azucena on Feb 21, 2020 11:47:08 GMT -5
Nurse isn't coming until 3 today which conflicts with when I have therapy and then have to pick up the girls. Means I'm figuring out if the neighbor can come sit over here while DH showers as he can only shower the hour before the nurse comes in case the wound vac dressing gets too wet and fails. DH doesn't really want me to ask anyone but I think there is still a very slight risk that he may fall. DH would rather skip his shower but that means he doesn't get one until Monday and besides being clean and fresh the hot water is so good on his muscles.
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Wisconsin Beth
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Post by Wisconsin Beth on Feb 21, 2020 11:51:39 GMT -5
ooo - letting it go flat is an idea. I'll see if I can find it next time I'm at walmart or target. When I went two weeks ago, I browsed the aisles looking for anything high protein and high hydration and came up with some interesting stuff LOL. There is a packet of beef sticks high up in the fridge that he walks by and grabs. It has to be up higher though or the kids will devour them in a day. I'm less worried about hydration now since his output has leveled off and he seems to be drinking enough to keep up. Today's task is to figure out Feb bills since it's payday. I feel like we have had too much money leftover so I fear that something hasn't been getting paid. DH usually does the bills, and I've been asking him and collecting a pile of bills from the mail, but I still think I'm missing something particularly since we are eating out every day and I've been spending whatever at the grocery store picking up exactly what he requests if I think it will help. We find it at Woodman's, in the organic aisle with bottled tea and other beverages.
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Post by TheOtherMe on Feb 21, 2020 12:35:28 GMT -5
azucena Before my gall bladder surgery, I couldn't handle carbonation. Even when I was in the hospital trying to figure out what the issue was, they were giving me flat sprite. I've not gone back to carbonated drinks and I don't miss them.
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azucena
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Post by azucena on Feb 21, 2020 12:48:11 GMT -5
Yeah, wouldn't be a bad thing if DH gave up sodas. I don't drink them unless he brings them in the house. Sodas are definitely where some of his prior excess weight had come from. When he'd choose to eat like crap, I've been known to say if he gets diabetes, I will not hesitate to kill him. It's one thing to care for someone who is ill through no fault of their own. It's another when it's self-inflicted.
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azucena
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Post by azucena on Feb 21, 2020 16:09:41 GMT -5
Good therapy session - she suggested talking to DH about the weight loss and agreeing on a number before we would take next steps. I'm thinking 10 more lbs so 140. Shes hoping his appetite kicks in this next week.
She said have home health weigh him in two weeks so its not on me to do.
Next steps would be getting GI Dr involves instead of surgeon and seeing a nutrionist.
With this plan in place I am to turn his eating choices back over to him. I think i can do that.
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finnime
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Post by finnime on Feb 21, 2020 16:59:28 GMT -5
That makes a lot of sense and would ease the stress factor. Let time and his own choices drive things. His appetite will come back.
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Post by Deleted on Feb 21, 2020 17:24:43 GMT -5
3 am and I cant sleep which sucks since I need to work at least 6 hours tomorrow, attend therapy which will wipe me out, and then coach a 7 pm tournament game followed by a 9 or 10 game tomorrow morning. I was sleeping well and then DH needed help finding a dry tshirt in mt laundry since he sweated thru and cant bend down to pick thru the pile I agree with earlier posts that men can be the worst patients but he has been a saint. And its things like tonight that I cant hire out. Or bathing him on the days he cant shower...i wouldnt want a stranger giving me a sponge bath either. Remember marriage vows are in sickness and in health. And while I appreciate all the compliments and well wishes in this thread as they are helping me keep my spirits up. I feel phony since I havent talked about how much his illness has cost us in our marriage. After he got better, we have had a rough time adjusting back to normal life. I'd been a caregiver for way too long which meant going it alone, making virtually every decision, and this has not played out well with my type a control freak personality. I have a tough time turning it off and treating him as my equal. At the same time, DH is by nature way more carefree and his illness has definitely stunted his personal growth in that by basically missing his 20s, he is kind of stuck there in that mentality with things like dungeons and dragons and an obsessive gaming hobby. It often feels like he chooses these over me and the kids and it has caused a ton of conflict. He values his free time because it was so rare meanwhile I tend to pour my entire self into our family and work and end up empty. As I worked thru therapy and started to be aware of carving out time for myself on a regular basis, we have really bumped heads because it feels like he uses it all up for himself and then some. We have lives thru periods of months at a time feeling like roommates. If we both werent so stubborn I have no doubt we would have divorced a long time ago. But we made a pact day one of our marriage that the d-word is not an option - infidelity or abuse being the exceptions but non-possibilities.
We struggle with having a parent-child relationship. He is more than happy to let me take the reins and I easily step into that and it works until it doesnt and one of both of us end up resentful.You have no idea how well this describes my marriage. But we're still working on it.
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buystoys
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Post by buystoys on Feb 21, 2020 17:30:31 GMT -5
3 am and I cant sleep which sucks since I need to work at least 6 hours tomorrow, attend therapy which will wipe me out, and then coach a 7 pm tournament game followed by a 9 or 10 game tomorrow morning. I was sleeping well and then DH needed help finding a dry tshirt in mt laundry since he sweated thru and cant bend down to pick thru the pile I agree with earlier posts that men can be the worst patients but he has been a saint. And its things like tonight that I cant hire out. Or bathing him on the days he cant shower...i wouldnt want a stranger giving me a sponge bath either. Remember marriage vows are in sickness and in health. And while I appreciate all the compliments and well wishes in this thread as they are helping me keep my spirits up. I feel phony since I havent talked about how much his illness has cost us in our marriage. After he got better, we have had a rough time adjusting back to normal life. I'd been a caregiver for way too long which meant going it alone, making virtually every decision, and this has not played out well with my type a control freak personality. I have a tough time turning it off and treating him as my equal. At the same time, DH is by nature way more carefree and his illness has definitely stunted his personal growth in that by basically missing his 20s, he is kind of stuck there in that mentality with things like dungeons and dragons and an obsessive gaming hobby. It often feels like he chooses these over me and the kids and it has caused a ton of conflict. He values his free time because it was so rare meanwhile I tend to pour my entire self into our family and work and end up empty. As I worked thru therapy and started to be aware of carving out time for myself on a regular basis, we have really bumped heads because it feels like he uses it all up for himself and then some. We have lives thru periods of months at a time feeling like roommates. If we both werent so stubborn I have no doubt we would have divorced a long time ago. But we made a pact day one of our marriage that the d-word is not an option - infidelity or abuse being the exceptions but non-possibilities.
We struggle with having a parent-child relationship. He is more than happy to let me take the reins and I easily step into that and it works until it doesnt and one of both of us end up resentful.You have no idea how well this describes my marriage. But we're still working on it. I think a lot of marriages have those moments. It takes dedication and commitment to work through them. I admire people who have come to a healthy balance of the parent-child/spouse relationships. It's difficult when the line gets moved due to illness or disability.
Kudos to you and to azucena for your willingness to work on it.
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azucena
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Post by azucena on Feb 22, 2020 5:42:35 GMT -5
You have no idea how well this describes my marriage. But we're still working on it. I think a lot of marriages have those moments. It takes dedication and commitment to work through them. I admire people who have come to a healthy balance of the parent-child/spouse relationships. It's difficult when the line gets moved due to illness or disability.
Kudos to you and to azucena for your willingness to work on it.
Donethat - mind sharing more? Always curious to learn from others experiences. Mine is so tied up in this illness. Buystoys - not to nitpick - and I do appreciate the support - I'm stuck on your word 'moments'. For us, it has been vicious cycles. Finn - I did talk to DH about the weight plan and he agreed but balked when I requested that he consciously make healthy choices with such a limited appetite. I made my point about stepping back on being responsible for his weight for my own mental health so let it go.
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azucena
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Post by azucena on Feb 22, 2020 5:48:58 GMT -5
Realized during this therapy session that his food issues are likely waaaaay deeper as I know there were times growing up that his house had no food. His folks are both blind and they lived below poverty yet chose to spend what little they had on smokes and booze.
When we were 17 and dating, he ended up eating at my house so often that my mom would just set a spot for him at the table. Years later she told me that she knew his situation (as did I) and she was happy to share what she could even though our farming family of 7 with sahm could hardly afford to feed an extra growing teen boy.
Is it any wonder though that he wants whatever food he wants when he wants it? Not sure it does any good to bring that up with him though but def gives me insight and empathy.
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azucena
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Post by azucena on Feb 22, 2020 5:54:50 GMT -5
When we talked tonight, he did share that he was extremely careful not to overeat when he had his first meals day 10 and 11 post surgery. Throwing up would have been a nightmare with this abdominal incision and would have delayed coming home. He wondered aloud if he subconsciously still has the same fear. We talked about staying with the small portions but more frequently.
By coincidence a friend cooked for him tonight while I was at bball. I was so tempted to text and ask how much he ate but I could hear my therapist saying dont do it.
My mom is cooking lasagna tomorrow when shes here for my sleeping pill. I may take advantage and go out to dinner with a friend- both to escape and to not know what he ate because it was weirdly freeing tonight. Plus all ive wanted to do this week is pop into hobby lobby and just browse to do something normal.
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