Page 1 of 2 12 LastLast
Results 1 to 10 of 18

Thread: burnt out!

  1. #1
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default burnt out!

    Hi!

    I am getting burnt out! We have been even more busy than we usually are and I do not like it. I am grateful that basketball is now done and wrestling for Logy ends next week. Things will slow down then. There have been a lot of school activities (besides the sport stuff) also. We have had stuff every single night for the past few weeks. I actually stayed home from church last night because I just needed a break. Though Logy still had wrestling, but Brian takes him to that so I didn't have to leave. It was so cold that I just didn't feel like dragging Caitlin out in that either. Looking forward to the 40 degrees we are supposed to be having on Monday! :)

    One interesting thing I have going on next week is a special needs planning seminar that is being hosted by the school. I am a little wary as the speaker runs a business doing this (I looked at the website that was on the invite). So I am hoping it is more informational and not a sales pitch. We'll see! That is where I will be Tuesday evening next week. I will let you all know how it goes! Future planning has been on my mind lately with all the budget cuts being discussed for my state. I am not a fan of Walker and his policies at all. The new proposed budget completely gets rid of IRIS and reworks FamilyCare to be run by a for-profit insurance company. Ugh. Terrible. Caitlin doesn't get those things yet, but she isn't too far from being 18 anymore. IRIS lets people totally self direct their funding (it almost sounds similar the IHSS? you have in CA) and FamilyCare is currently broken up into difference MCO (managed care organizations), not sure if those are county run or not or what. I spoke on the phone with a lady (who has CP and uses IRIS) that I met, she explained the difference between IRIS and familycare to me which was nice. We also talked about spinal fusion which she had when she was a young adult. It was nice to get a patient's perspective on that!

    Speaking of fusion, we did the blood draws they wanted, haven't heard anything back about the results. I am guessing no news is good news!? Next Friday she has the first of many appointments though for it. We will be going to Milwaukee and having a chest xray and some kind of lung function testing and then meet with a pulmonologist. They want to check lung function and make sure it is good before they do the surgery. So wish us good luck and good weather for driving! :)

    We also have a neurology appointment upcoming....going to meet our new doctor for that as our old one that we liked moved to a different state. I am hoping that we like the new one!

    Run run run!

    Lisa O.

    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  2. #2
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hello again!

    One fun thing I have been doing is the 40 days 'decrapify'! http://www.whitehouseblackshutters.c...-40-days-2015/ I just really liked the word 'decrapify'....it really says it all! I totally have the hoarding gene but I have managed to keep to the task so far, today was day 15. I've been posting on facebook, but thought I would share it here too since I can't believe how many people I have inspired to join me in this by posting pictures of my garbage, lol! Had to share my yesterday decrapify though, I have been meaning to donate Caitlin's wheelchair now that we are certain the new one is good. I looked on the state dhs website for places to donate but most of the places they listed were either far away or they actually resell the donated items! I thought that was terrible! After thinking about this awhile, I thought of the new daycare/respite place for disabled children/adults that just opened up, called A Very Special Place. I called them up yesterday and asked if they could use those items and they said yes! (I donated Caitlin's old gator walker too, it was like brand new since she got it right before her hip surgery and then lost walking ability so it sat in our attic and now it is too small for her). I loaded those up in my van this morning and dropped it off there! It felt so good to get that out of the house! :) 11050655_10206395988882223_213383457226689441_n.jpg

    This was some other junk I had, unbelievable, eh?! 1669836_10206343881619574_4433211622485113467_o.jpg The shelf all that junk was on, my cousin posted on fb that he would take it (I said I was going to throw it out) so I dropped it off at his house the next day and surprised him when he got home from work, it was sitting next to his garage door, lol! I now have a totally empty corner in my basement near my laundry area. I plan to paint the gray concrete wall there with drylok waterproofing paint and then paint it a nice color to brighten up my laundry area. I also want to move my canning shelf (which you can see in the picture) over where this junk was so I can put our white plastic table there so I can fold laundry down there instead of piling it up in our room. This 40 days thing has really lit a fire in me to get rid of long term junk that I have been holding onto. One more laugh for you, the parquet floor tile box in this picture 1907403_10206343880619549_9041377485508012993_n.jpg. It had been sitting on this shelf (the shelf I just gave away) for over 10 years and I never knew what was in it. I finally opened it up and it was all the gerbil stuff from when I had a gerbil in college as a pet, lol! I might have to do this challenge for a 100 days to get rid of all my junk! LOL! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,037
    Blog Entries
    1

    Default

    ((((((Lisa)))))) ~

    I'm not at all surprised that you are burnt out. You've had a tremendous amount of stress, and now more stress in preparation for the spinal fusion surgery, and it's overwhelming.

    I know so many parents in your age group, who are out at their kids' activities every single night for weeks on end, and they are burnt out, just like you. When and why did this become a trend? Running yourself ragged ... When do kids have time to do their homework? Or to relax and just "be?"

    At least there is a light at the end of this tunnel, as these activities wind down. I hope nothing new takes their place!

    I will be very interested to hear about what you learn at the future planning seminar. I'm not surprised that the speaker is in the business of future planning for special needs. Hope you come away with lots of good information.

    Sadly, I'm also not surprised at what is happening to the IRIS program. You know your Governor is going to make a bid for the Presidency, of course. To me, that thought is just downright scary.

    The lung function test for Caitlin may be associated with wanting to determine whether Caitlin's spine is impacting her lungs. Just a guess. Is Caitlin able to blow out her breath into a tube? That might be the test they administer. It's been a long long time since I've seen a lung function test. Jon cannot blow out his breath, so he has never had one. (I was at the hospital with my dad, when he had one.) Another concern might be clearing her for anesthesia. Prayers for good weather and safe travel!

    De-Crapify!!! I LOVE IT! It is precisely what we need to do! We did much of that last year after the earthquake. But our garage ... Three wheelchairs, a walker, a manual hospital bed and mattress, and, and, and, and ... Papers from my aunt's and my parents' estate/probate. It is unbelievable. It is 1000 times more than your clutter. But then, I'm older and have had more time to accumulate crap.

    Kudos to you for doing this, Lisa!

    I think you deserve a break here



    and the cabana boy is bringing you two and a large palm frond to wave over you to keep you cool and relaxed ~

    Enjoy!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  4. #4
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hi!

    The funny thing is we don't even have the kids in a lot of stuff, I try to keep them all to one sport at a time. I was kind of glad Tyler didn't want to wrestle anymore or we would have boys at 3 different levels which would mean 3 different practice schedules! Then we do piano for 2 of the boys too but that isn't too bad and the teacher is only a few blocks from school so it is convenient for driving. I think that is just the way it is for the ages my kids are right now. Brandon had the district music festival today, he did great! Played a snare drum solo. When I was in school, we didn't do music festival until we were in 9th grade (he is in 6th). It is good for him though to get used to being in front of people and having to speak up (they have to introduce themselves to the judge and say something about the piece they play). After the judge critiques them. We went early and listened to a few of the people ahead of him. This festival rotates among the local high schools every year. It was at one that was pretty close to home though, whew! :) We listened to some groups too, a few jazz groups and a brass group. It was a fun day! I don't know how he scored, results were not posted by the time we left. When I was in high school and did that, if you scored high enough, you got to perform at the state music festival. Part of my 'hoard' in the basement is my pom pom coat with my band letter on it...I said to Brandon, that is how mom got all those medals on the letter from doing the music festival, lol! He didn't know what they were from. :) That coat is on my list of things to decrapify for my challenge. I do plan to cut the letter off and save the letter & medals. The coat can go though. It is actually a little moldy from being in the basement so long. My parents had to empty out part of their basement over the summer to have a wall repaired that was bowing in. Seeing all their stuff piled onto their porch that is attached to the garage really motivated me to try and reduce what I am saving. I don't want to end up with stacks of rubbermaids like that. My mom said my dad was going thru it all before putting it back downstairs but I suspect not much got tossed, lol. He did get rid of some books I know, but guess where some of those went? :)

    I cringe at the thought of Walker running for president. He is terrible, let's just say, I did not vote for him....3 times in fact! A little part of me does think it will be interesting to see how far he goes, only to see what kind of dirt gets brought to the surface about him. There just seems to be so much corruption around him, not sure how he keeps his hands clean from it all though. I was really hoping Mary Burke would have won this fall. Well, speaking of government, I just finished up the federal taxes and now should move on to finish up the state ones. Yee haw!

    Lisa O.

    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  5. #5
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Wow Lisa! I hope things slow down a little. I remember doing all the school stuff with my 2 older kids and it was always something. But it was well worth it in the end. I like your word decrapify! We need to do that AGAIN. I feel like we do it every year and BAM we're right back to "crap" again I hope your neuro appointment goes well and you guys like the new doc. Praying that all the pre-surgery appointments go well. Keep us posted.
    Mary Grace

  6. #6
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,037
    Blog Entries
    1

    Default

    ((((((Lisa)))))) ~

    Congratulations to Brandon for his performance in the music festival! Excellent experience for him. He'll be a pro in 3 years!

    Your moldy band coat ~ how sentimental! Should have kept it in a hermetically sealed box! Where will the medals and letter go? In a box? In a frame to hang on the basement wall?

    When we were cleaning out my 90 yr old aunt's home after she passed, I gave her niece-in-law quite a few things to keep. When we returned to the niece's home, carrying boxes full of my aunt's belongings, her husband declared, "We just had a garage sale to get rid of crap! Now you bring home more crap?!"

    Jim accuses me of not wanting to let go of things. But that's not entirely true. I will gladly get rid of the majority of the crap in our garage. In fact, I will be gleeful to do that. But I can't do it on my own, and we need a plan. Some stuff will be donated, some will be trashed, and some will be kept. But it is a giant mess to attack at once. And I am a very tired old lady.

    About your Governor ~ if he is surrounded by corruption, his hands are not clean. I think the theme for the 2016 Presidential Race should be, "Bring In the Clowns."

    For us, this coming week holds a visit from the lovely Mother and Daughter Toenail Gals, and Jon's nurse for a catheter change. Fun times!

    Jon's catheter was tugged last night as we were pulling him up in bed, and today, he has had some blood in his urine. Nothing alarming, but blood loss is never a good thing, and it's particularly onerous, when he is about to have the cath removed and replaced, causing more irritation and bleeding. Timing is everything!

    TAXES?! I'm avoiding them. But I'd better do them now, or it will be April 15 tomorrow! Good for you getting yours done! You've inspired me!

    Get some rest! Here's your

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. #7
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Thanks ladies!

    The band letter & medals will go into a box. I still have shelf down in the basement that has high school stuff (yearbooks, scrapbooks, etc) so it will go in with that, to be dealt with at a later date. Today's decrapify though it is the laundry basket filled with clutter that has sat in the hallway since Christmas. I took a basket and put any clutter in the living room and kitchen in there and stuck it in the hallway so it wouldn't be in the way when we had people over for Christmas....now march and it's still there. LOL! That is how I roll. That is what I like about this challenge though, it is just to do one thing a day...not worry about the giant task that I face. Thinking of all my crap is overwhelming but just picking one thing a day has been doable. And I have seen results! That is motivating! The boys can now access my old laptop in the kitchen desk area (used to be buried under mounds of paper/photos). I actually had to do that since Tyler's class is piloting google classroom for their school. And both T & Logy are piloting a math app that is supplemental to what they learn in their regular math class. It is something that they can work on at home for extra practice too....especially now that they can access the laptop! LOL! Neither Brian nor I let the kids touch our 'good' laptops. To each their own in our house!

    I agree on your presidential theme! It sickens me the amount of money thrown around....it could be spent so much more productively.

    Good luck on Jon's catheter change this week, hope it doesn't continue to be irritated and that a new one solves those issues. I can't believe how fast this year is going so far, yes april will be here soon, don't wait too long!! Today is a beautiful spring day here, weather in the 40s and sunny! I took the dog for a walk around the neighborhood instead of being on the treadmill at the gym. He loved getting out somewhere besides the backyard!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  8. #8
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,037
    Blog Entries
    1

    Thumbs up

    ((((((Lisa)))))) ~

    While I don't exactly decrapify every day, I have been periodically tackling smaller projects and getting rid of a lot of stuff. I have another similar task, though I wouldn't call it decrapifying. Jon's closet. Full of clothes he no longer wears. I procrastinate on that task, because it's painful to remove his clothes, knowing he doesn't need them anymore. But we desperately need the space for his supplies. We have boxes of his supplies in our GARAGE! which could be eliminated, if I had access to Jon's closet shelves. (It's a walk in closet,by the way.) I will be forced to do it, when we have our upstairs bathroom remodeled, as he has a hole in his closet ceiling from a bathtub leak, years ago. The plumber will likely want to access it, and hopefully, repair it.

    Old Lady Needs Help: What is "piloting"?

    After I posted last night, Jon stopped peeing. His catheter slid out about 4 cm, same as last Fall when he held his urine for 2-16 hours every day, then voided huge amounts. Because of his enlarged prostate, his cath has to be really in all the way, or holding urine is the result. So, I emailed his wonderful nurse at 12:30 this morning, and I called her at 8 this morning, as she was scheduling her patients for the day. We lucked out that she was on call today and that several patients had cancelled, so she had room for Jon. So, he had his cath change today, and all went well. Still a bit of strawberry lemonade appearing occasionally, to be expected, but that puppy is IN and taped down, and he's producing continuous urine. So YAY!

    Jon's nurse, Jim and I all kvetched about how tired we are, thanks to the purposeless daylight savings time. Gah! I HATE IT!

    I'm so happy for you that you have warmer weather and sunshine so that you and your dog (Ranger?) are able to get out for a nice walk. So good for you ~ fresh air, Vitamin D from the sun. Hope that great weather continues.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  9. #9
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hi!

    It is hard to say goodbye to things our kids can't use anymore....I can totally relate! For me, it is toys that she will never play with. Still have a bin of Barbie stuff in her closet and we could use that space for better things too but, it is hard for me to let that go. It was weird tonight to see her by other girls her same age. We had Lent supper/service tonight and we finished eating early so I had her wheel to the end of the hall (the boys were outside in the back playing basketball with other boys) so we watched for a minute and then I had her wheel back. She heard music coming from the office and there were 4 girls chatting with the pastor about the trip meeting (the confirmation kids are going to a youth gathering in Detroit)...Caitlin wheeled herself in too and was listening in (I hovered in the hallway). It was funny to listen to them chit chat. I am not used to that kind of teenage musings. Maybe I am glad I don't have to listen to that every day. :) After a few minutes I wheeled Caitlin out to go get a seat in church and said, 'say bye Caitlin'. She said bye and all the girls said bye to her and waved which was nice.

    "Piloting" = guinea pigs....test pilot classroom. They plan to roll out computers in all the classrooms eventually, but Tyler's classroom & one other are the first ones to have a chromebooks (mini laptops) for each student. I am a little unsure how I feel about more computer time. It can be good and bad. I feel a little bit that they will be using computers more and more enough when they get older, let them be kids for longer.

    Glad Jon is producing continuous urine and the new catheter is secure! My Dad is having issues now with his prostate I guess...my Mom said he went to the doctor and he had to have some tests which showed enlarged prostate and he is trying some medication that is supposed to help (I didn't ask which, she was kind of cranky that day). If that doesn't work there is a surgery they can do also. She was freaking out about that he could have to end up always using a catheter to go to the bathroom. Hopefully the meds work out for him. He is also having his 6 month heart check up in a week or so. Hoping all goes well!

    I hate DST too, though for some reason, I haven't had much trouble this time. I think it was worse for me to 'fall back'. It helped that I had to get up and get going right away on sunday so I didn't feel too out of sorts from getting off my sleep schedule. We had to leave at 8 so I got up at 7:15 which really felt like 6:15 which is when I get up on a school day so I was able to get going right away. I just wish they would move the clocks 30 min and leave it that way all year! :)

    Oh yeah, I went to the special needs planning seminar last night. It was nice, but more of a general overview, much of which I already know about with writing with y'all here at BT! There were some handouts that I need to read through and it was nice that he went over how a 3rd party special needs trust works and why it is important. We have life insurance in place, but we need to do the trust thing yet. He also talked about the importance of doing a 'my special life' book about our loved ones. Another thing I really should have done already....a book that lists everything about the loved one, doctors, medications, what their schedule is, what they eat, what they like to do....all things for someone to step in and do the caregiving should something happen to us (parents). I thought it was neat that at the end we had to write our address on one side of a neon index card and on the other side, write down one thing we learned tonight that we want to complete. He called it the 'guilt card'....he will mail these to us at a later unspecified date! I thought that was a cute reminder for us. I did ask one question about the difference between guardianship and conservatorship. (it was on one of the slides about applying for this when they turn 18) He said conservatorship was just a British term for guardian...I was wondering if that was correct? (Donna?) I have seen the term conservatorship used in comments on a long term care article recently and didn't know if there was a difference or not. I am glad it got me thinking about some of this stuff though, I have Caitlin's IEP tomorrow afternoon (still busy busy busy!) and I know last year they ask what I see for her future, like for transition planning when she is older. We also have her appointment in Milwaukee on Friday for pulmonology. They test the lung function for her fusion surgery...

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  10. #10
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Lisa, Good luck with the appointment tomorrow. I agree the change of the clocks can be tough to adjust to but I am liking that there's daylight longer in the evening. That's when I like taking a walk. It also helps I guess that we've had a little warmer weather and some sunshine.
    Rose, It's good to hear that the catheter change went well.
    Mary Grace

Page 1 of 2 12 LastLast

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.