Deleted
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Aug 18, 2025 19:46:44 GMT
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Post by Deleted on Jan 28, 2020 19:44:31 GMT
Okay girls before I post about dinner I need to vent and get your opinions as I value them...
As you know we are in a special intensive therapy for dd. 3 days a week her schedule is 7am till 6:50pm. Home, dinner, a little down time, bed.
One day it is 7am to 3:15pm, home for 40 min, therapy till 5:30pm ish, home.
Fridays are infusion days once we get going.
They asked us to do an extra hour of therapy making that one day go to 6:30ish. That would be 4 days of 6:50pm arrival time.
Dd is stressing out more because of her long days. Dh is getting behind on lesson plans and grading.
We barely have down time. Ds is acting out and very tired from these long days.
Dh and I have been really tired.
With that it is nice for dd to be around other medical kids and for dh and I to be around parents who get some of our struggles (dd is quite unique within the group).
Dh and I have been feeling like this is a waste of time. And dd's and all of our stress hasn't improved but increased by a lot!
Is this normal for therapy? I dont want to have to pull ds from school an hour and half early so dd can get some down time (40 min maybe) before therapy. That isnt fair to him. He loves school.
We are in this 2 months now and I dont see any changes. Just more stress.
For those who have been there done that when did you see changes? Is this normal? (The added stress)
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Deleted
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Aug 18, 2025 19:46:44 GMT
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Post by Deleted on Jan 28, 2020 19:49:58 GMT
As for dinner...
Whole roasted chicken with roasted vegetables and homemade orange cranberry sauce. Mmm
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Post by scrapmaven on Jan 28, 2020 20:00:39 GMT
Even funnier is that we all follow her anywhere, no matter what date she uses!  I hadn't even realized she had the date wrong until you posted this!  I responded then realized it was wrong! HAHAHA! I changed the date. It's not like I can't look at the date on the bottom right of my computer. DOH! KelleeM, my brain is in the off position. |
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used2scrap
Drama Llama
Posts: 6,147 
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Post by used2scrap on Jan 28, 2020 20:07:57 GMT
Lots of stress and mess here today and I’m just not feeling it at all. Not getting enough sleep either. Some sort of take out for dinner tonight. Ugh.
Here’s hoping tomorrow is a better day.
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Deleted
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Aug 18, 2025 19:46:44 GMT
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Post by Deleted on Jan 28, 2020 20:17:10 GMT
Lots of stress and mess here today and I’m just not feeling it at all. Not getting enough sleep either. Some sort of take out for dinner tonight. Ugh. Here’s hoping tomorrow is a better day. Hugs galore. |
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Post by PolarGreen12 on Jan 28, 2020 20:23:30 GMT
Tonight doing Caesar chicken and mushrooms with some Parmesan crusted zucchini and squash on the side. It’s cold and rainy here after 3 full days of warm sunshine. The front moving in has left me with a super fun sinus headache which of course has made me cranky. ☹️ Ready to go home and get in my comfies for the evening. But all is well other than that. What time do you check in tomorrow scrapmaven ? @sunnycalimom sorry the therapy is causing more stress. Maybe it’ll even out and the benefits will start to be more obvious? |
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Deleted
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Aug 18, 2025 19:46:44 GMT
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Post by Deleted on Jan 28, 2020 20:24:44 GMT
Tonight doing Caesar chicken and mushrooms with some Parmesan crusted zucchini and squash on the side. It’s cold and rainy here after 3 full days of warm sunshine. The front moving in has left me with a super fun sinus headache which of course has made me cranky. ☹️ Ready to go home and get in my comfies for the evening. But all is well other than that. What time do you check in tomorrow scrapmaven ? @sunnycalimom sorry the therapy is causing more stress. Maybe it’ll even out and the benefits will start to be more obvious? I hope so. A friend did the program with her kids and it took a good 3 months. They were in it 5 months. 😳 |
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Deleted
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Aug 18, 2025 19:46:44 GMT
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Post by Deleted on Jan 28, 2020 20:25:49 GMT
So far 2 families have graduated and 2 have dropped out. Those 2 who graduated were in it 4 months.
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desertgirl
Pearl Clutcher
Posts: 2,646
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Post by desertgirl on Jan 28, 2020 20:58:10 GMT
Lots of deliciousness on the thread! We are having baked spaghetti a la desertgirl. I don't follow a recipe bc I don't always have the ingredients. "What's not to like about cheese and pasta and homemade sauce?" (paraphrase of the Barefoot Contessa.) Arrows sent to all of you who posted. Some great news and some not so great, but the tribe forges on! Special arrows to those who are on a food plan and are struggling but staying the course. It's so hard, hard, hard. Thanks for the thread, Oh Great One, scrapmaven Queen Pirate Lady. We will ALL be with you tomorrow. A few of the arrows want to come, too. I'll make sure they have bathed. |
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tuesdaysgone
Pearl Clutcher
Posts: 4,832
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Post by tuesdaysgone on Jan 28, 2020 21:39:45 GMT
scrapmaven, I can go all day and hardly know what DAY of the week it is, let alone the date. I hope you can get some rest tonight.
Dinner will be something from the fridge. Not feeling very inspired right now. We can't all be AussieMeg every night!
@sunnycalimom, good lord! I don't see how you can keep up with that schedule. Stress is SO negative and you're right, it may not be worth it. I'm in awe of your dedication.
I woke with a crick in my neck. I'm doing some yoga and stretching this evening to get myself right.
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Post by destined2bmom on Jan 28, 2020 21:47:05 GMT
Hugs my sweet scrapmaven ! sueg Good for you! @sunnycalimom I have no answers. I understand that all of you are tired. But I would try to stay in the program until the end. It may take a while for the benefits to start evolving. littlemama Please continue to monitor your cough and if it doesn’t get better; go back to the doctor. Today I did grocery shopping. Tonight is YOYO. We all ate a late lunch and DH and I have an HOA meeting that we have to attend tonight. |
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Post by AussieMeg on Jan 28, 2020 21:54:57 GMT
DS spent the day at the river, then rang me to see if a couple of mates could come back to our house to stay the night (they're still on school holidays until Thursday). So DSO suggested we just get pizza. In the end the other two boys didn't come back to our house, and DS didn't want pizza, so we made chicken burgers instead. DSO bought the delicious big fat juicy thigh fillet burgers with a southern-fried style coating - they are divine. And you oven bake them, so you can pretend that they are low calorie.  By the way, you do know today is the 28th, right? 😊 Even funnier is that we all follow her anywhere, no matter what date she uses! I hadn't even realized she had the date wrong until you posted this! Haha, you're right! I'm sure I've mentioned this before, but half the time I don't even look at the date on the thread, because y'all do your dates backwards and it confuses me.  3/7 is the 3rd of July, not the 7th of March! Plus it always the next day for me, and that just adds to the confusion. So I just post on whichever thread is closest to the top.  |
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scrappert
Prolific Pea
RefuPea #2956
Posts: 7,994
Location: Milwaukee, WI area
Jul 11, 2014 21:20:09 GMT
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Post by scrappert on Jan 28, 2020 22:01:55 GMT
@sunnycalimom - I have no experience but wanted to voice my support. It sounds stressful, I was stressed reading it. I hope you see improvements soon.
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Post by christine58 on Jan 28, 2020 22:28:49 GMT
Corky's ribs from QVC~ My mom gave me a rack awhile ago and I decided today to try them. Not sure what else...maybe rice.
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Post by christine58 on Jan 28, 2020 22:30:32 GMT
So far 2 families have graduated and 2 have dropped out. Those 2 who graduated were in it 4 months. May I ask..what kind of therapy?? I think you have a lot on your plate and your DS senses it I am sure. |
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Deleted
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Aug 18, 2025 19:46:44 GMT
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Post by Deleted on Jan 28, 2020 23:04:36 GMT
So far 2 families have graduated and 2 have dropped out. Those 2 who graduated were in it 4 months. May I ask..what kind of therapy?? I think you have a lot on your plate and your DS senses it I am sure. MEND. The program is mainly to help a family through that chronic illness in a couple of different ways. First, it helps teach the kids how to build that resiliency by helping them understand what the internal state of the body is, and how to know when the stress responses are coming, and how to cope with those internally. There are a few programs in the country that do that, but what's unique about the MEND program is that it doesn't just work with the kids, it walks through the process with their families, siblings, guardians — everyone. The MEND program aims to provide supportive solutions for reducing stress and reversing the damage it can do to patients and families. By addressing the stress of the illness, we promote an environment of healing. |
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Deleted
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Aug 18, 2025 19:46:44 GMT
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Post by Deleted on Jan 29, 2020 0:16:56 GMT
The thing is pain is a main stressor for hEDS. You can't fix the pain. You can't deal with it because it is always there. Some days its at a 4 or 5, others 8 to 10. Dislocations. Popping. Swelling. Fractures. Aches. Muscle pain from having to take over for what the ligaments aren't doing. Legs and feet giving out and you falling.
I am not sure how addressing the stress of the illness will promote an environment of healing.
She knows pain is a stress. But that pain is always there. And you can't heal a genetic condition. To me that sounds like they think it is psychotic. All in her head.
And unfortunately many EDS especially hEDS patients have had to deal with that 😞
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Post by teddyw on Jan 29, 2020 2:45:26 GMT
@sunnycalimom do you have to add another day? Can you just keep the days you have? You would still be going and participating.
Do they give an explanation why another day is suggested?
Your poor dd has been so sick lately on top of this. What does she want to do?
Didn’t feel like cooking so I had cereal and do had frozen pizza.
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Post by lucyg on Jan 29, 2020 2:53:20 GMT
The 10yo made it into the school spelling bee, which was this afternoon. He lasted almost to the final round before they hit him with a tough one ... “upholstery.” He was very, very sad afterwards. (Could have been worse ... one poor girl got DQ’d when the principal didn’t pronounce her word clearly and she spelled what she heard ... I know because I heard it that way, too). So for dinner, I made him stir-fried chicken and veggies with steamed rice. Any rice dish he can toss soy sauce on makes him happy. I didn’t make enough rice for how much leftover chicken and veggies there are, so I’ll have to make more tomorrow if he wants the same dinner. Also, I am being super lazy and ordered groceries online. I’ll pick them up while he’s at tae kwon do. I’m another one who doesn’t like dealing with a roast chicken straight out of the fridge. Being the slob that I am, I just take out the chicken (Costco or home-cooked) and let it come to room temperature before I pull it apart. @sunnycalimom, I have no answers for you, but I’m sorry the program is so stressful, timewise. I guess I would try to stick it out. But I’m not the one having to live with it, so don’t listen to me. scrapmaven, good luck tomorrow.  |
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Deleted
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Aug 18, 2025 19:46:44 GMT
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Post by Deleted on Jan 29, 2020 3:21:21 GMT
@sunnycalimom do you have to add another day? Can you just keep the days you have? You would still be going and participating. Do they give an explanation why another day is suggested? Your poor dd has been so sick lately on top of this. What does she want to do? Didn’t feel like cooking so I had cereal and do had frozen pizza. They want to add more time to Wed. That day is until 5:30 but they want to stretch it to 6:30ish with us getting home around 6:50. |
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Deleted
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Aug 18, 2025 19:46:44 GMT
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Post by Deleted on Jan 29, 2020 3:22:24 GMT
@sunnycalimom do you have to add another day? Can you just keep the days you have? You would still be going and participating. Do they give an explanation why another day is suggested? Your poor dd has been so sick lately on top of this. What does she want to do? Didn’t feel like cooking so I had cereal and do had frozen pizza. She likes the teen part that is 2 hours but isn't a fan of the family + teen time. She also doesnt like that it starts right after school |
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Post by scrapmaven on Jan 29, 2020 4:15:10 GMT
@sunnycalimom, as I read your post I was wondering if this program is adding more stress to the family, rather than improving things for everyone. Does your ds need to be at all of the sessions? I would suggest talking to your dd's lead therapist and voicing all of your concerns. A program like this won't work if everyone is miserable and it may not be for everyone. Time to come together as a family and discuss it w/the therapist. Then go w/your gut feeling. HTH. ((((HUGS)))).
Surgery is at 3:45, so I have to be there at 1:45. I hate late afternoon surgery, because the entire day is spent dwelling on both impending surgery and being really thirsty.
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Post by scrapmaven on Jan 29, 2020 4:34:08 GMT
destined2bmom, I might be posting too late, but I can post the thread tmw am, since I'm home until afternoon.
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Post by destined2bmom on Jan 29, 2020 4:36:42 GMT
destined2bmom , I might be posting too late, but I can post the thread tmw am, since I'm home until afternoon. That would be wonderful to see you post it before your surgery. Remember I am sending you Gigantic Hugs, prayers and kisses for a successful surgery! |
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Post by scrapmaven on Jan 29, 2020 4:39:36 GMT
destined2bmom , I might be posting too late, but I can post the thread tmw am, since I'm home until afternoon. That would be wonderful to see you post it before your surgery. Remember I am sending you Gigantic Hugs, prayers and kisses for a successful surgery! You're such a sweet person. |
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Post by gmcwife1 on Jan 29, 2020 4:58:27 GMT
Hi friends  I made chicken chili for dinner tonight. It wasn’t bad, I thought it could use a little more flavor, but dh had two bowls so I guess it was ok Sending  To everyone that needs them |
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Post by scrappintoee on Jan 29, 2020 6:02:58 GMT
scrapmaven .... We realize you may NOT see this in time, but just in case you do-- Nurse Meaty, Nurse Sophie, and I want you to know we've prayed for you and your surgery today !!!! Even though I explained to them that you assured us it's "no big deal", they realize that ALL surgery is a big deal ! They're terri-bully sad that they can't be your nurses, but hope your hooman nurses are just wonder-bull and take paw-some care of you! Lotttsssa (( huggies )) and prayers!! and..... @sunnycalimom ....They also prayed for your daughter and your whole family! We hate that she is in so much pain all the time!  They are terri-bully worried about how stress-bull all of this is! (( hugs ))  
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Post by lucyg on Jan 29, 2020 6:05:20 GMT
My favorite doggy stamp set. |
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Post by scrappintoee on Jan 29, 2020 6:43:43 GMT
He lasted almost to the final round before they hit him with a tough one ... “upholstery.” He was very, very sad afterwards Oh nooo....that is SO sad!!! I hope he was at least proud of himself for making it into the bee, though! (don't be shocked and disappointed if I don't blabber on with two paragraphs about my LOVE of words (or, shall I say..."my GORK of words",) followed by another paragraph (or three) about my history with the word upholstery!!)  But seriously, it makes me so sad for him! !  |
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I hadn't even realized she had the date wrong until you posted this! 
3/7 is the 3rd of July, not the 7th of March! Plus it always the next day for me, and that just adds to the confusion. So I just post on whichever thread is closest to the top. 
To everyone that needs them 
They are terri-bully worried about how stress-bull all of this is! (( hugs )) 