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  1. #21
    hbridge is offline Emerald level (3000+ posts)
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    Quote Originally Posted by niccig View Post
    As difficult as it is, you need to put on your oxygen mask. Can you get some help to take routine tasks off you, like the cleaning or grocery delivery. Go into survival mode and just focus on what has to happen for that day. Are you seeing a therapist to help you cope? I know you don’t have time, but they can help you develop strategies and it’s 1 session a week just to focus on you.

    DS’ medical condition is nerve pain that no meds alleviate. On the pain scale, pts say it’s worse than childbirth and pts have ended their lives because if the pain. DS had scale of 6-7 daily and then a pain flare would shoot it up to an 11. He couldn’t walk and was in a wheelchair on days with pain flare. Just explaining this to say I understand how difficult this is to cope with.

    What got us through was DS seeing a psychologist who was experienced with pain patients. He taught DS strategies to cope and developed a plan when the pain flared. DS was in PT, aqua PT and acupuncture every week. We worked with a behavior specialist who was also experienced with pain patients and she helped us at home with developing routines as DS was still in school. She was also my support giving advice on how to cope. I could even call her to get advice on how to handle a situation. The doctors weren’t as helpful with dealing with the day to day and we didn’t see them every week either. The psychologist, physical therapist and behavior specialist gave more helpful advice to get through each day.

    Your support may look different, but I hope you can find it. I know it’s difficult, but keep looking for that support. Years on, DS is thriving. He still has the medical condition and always will, but he’s learned how to live with it. Sending many many hugs


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    Thank you for posting this. We are hopeful for a pain management plan. The appointment with the pain clinic is in a month... Glad to hear that you child has found some relief.

  2. #22
    niccig is offline Clean Sweep forum moderator
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    Quote Originally Posted by Percycat View Post
    This was such a nice message and a great update. I remember your DS having so many challenges and knew you were all doing better, but it was really nice to read about the process and how it help your DS thrive. Best wishes.
    Thanks. It was a difficult year until we got the correct support people together. DS still sees his psychologist as he wanted to see him for maintenance, only 1x month. He no longer needs the other therapies. The biggest lesson I learned was DS’ mental health was most important and I’d do anything to protect that.


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  3. #23
    niccig is offline Clean Sweep forum moderator
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    Default How to stay calm...all the time...

    Quote Originally Posted by hbridge View Post
    Thank you for posting this. We are hopeful for a pain management plan. The appointment with the pain clinic is in a month... Glad to hear that you child has found some relief.
    I hope they can help you form a plan. It did take time to figure out what worked for DS. For him, a combination of music, mediation, PT stretches, and gentle exercise got him though the pain flares. Longer term it was the regular psychologist session, PT sessions, aqua PT sessions and acupuncture that helped DS.

    It’s difficult to watch then be in pain and not be able to fix it. All we could do was support DS to go though the steps in the plan. He didn’t want to because he was in pain, but he had to do it. He was a minor so we did have some say in what he did. My worst days as a parent was to tell him on the phone I wasn’t picking him up from school because of the pain, he had to go through his plan with the school nurse supervising then go back to class. I cried and cried after I hung up the phone.

    But it worked. The more he followed the plan, the more quickly he dealt with each pain flare and each flare didn’t last as long. Part of it was DS training himself to know he could deal with this chronic pain.

    OP, sending hugs to you all!!




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    Last edited by niccig; 02-22-2024 at 11:28 PM.

  4. #24
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    I would say:
    Therapy for you
    Therapy for DC
    Figure out what you can farm out or quit--can you take leave from one of the jobs? Hire someone to clean? Anything to take a load off of you? Anything!
    What is ONE thing you can do every day for you? Even if it is sit in your room and breathe with no interruptions for 10 minutes. Something
    Mom to:
    DS '02
    DS '05
    Percy--the wild furry child!!! 2022----
    Simon--the first King Charles cutie 2009-2022
    RIP Andy, the furry first child, 1996-2012

    "The task of any religion is not to tell us who we are entitled to hate but to teach us who we are required to love."

  5. #25
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    I’m so sorry. There is no way to stay sane yourself given what you are dealing with. My situation is nowhere near yours (but just keep having small difficulties things that keep coming and coming), and I’ve been struggling as well. Taking walks (outdoors if possible) while listening to music helps temporarily. Given your kid’s screaming, I’d keep pushing trying to get them pain meds. I don’t have much advice but I’m here and I’m listening and i really hope things improve soon.
    DD (3/06)
    DS1 (7/09)
    DS2 (8/13)

  6. #26
    erosenst is offline Sapphire level (2000+ posts)
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    So sorry to hear everything that's going on.

    Since you were asking for advice (I think - disregard if not..) DD was originally a little skeptical/anxious about Uber. Walking through the steps/having a plan may help DC feel more comofortable - how to use the app, specifically check the license plate, text driver info to a friend upon getting in and out of car. Also - if drive is taking longer than expected at least one of the two (maybe both) will send a text asking if you need assistance. DD is now an experienced and confident user. While she's no longer in HS, she's still a very petite female and we do not have concerns with her taking an Uber alone.

    Good luck/hope this season passes quickly.

  7. #27
    chlobo is offline Diamond level (5000+ posts)
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    Given that your pain appointment is a bit off, is there any chance DC might feel comfortable trying something else, like acupuncture or biofeedback or some other alternative method that might help, even in the short term?

  8. #28
    gatorsmom is offline Pink Diamond level (15,000+ posts)
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    Quote Originally Posted by erosenst View Post
    So sorry to hear everything that's going on.

    Since you were asking for advice (I think - disregard if not..) DD was originally a little skeptical/anxious about Uber. Walking through the steps/having a plan may help DC feel more comofortable - how to use the app, specifically check the license plate, text driver info to a friend upon getting in and out of car. Also - if drive is taking longer than expected at least one of the two (maybe both) will send a text asking if you need assistance. DD is now an experienced and confident user. While she's no longer in HS, she's still a very petite female and we do not have concerns with her taking an Uber alone.

    Good luck/hope this season passes quickly.
    This is really helpful, thanks! We haven’t started teaching the kids how to use Uber yet but hope to this summer.
    " I object to violence because when it appears to do good, the good is only temporary; the evil it does is permanent." Mahatma Gandhi

    "This is the ultimate weakness of violence: It multiplies evil and violence in the universe. It doesn't solve any problems." Martin Luther King, Jr.

  9. #29
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    Quote Originally Posted by gatorsmom View Post
    This is really helpful, thanks! We haven’t started teaching the kids how to use Uber yet but hope to this summer.
    Also within Uber app, once you’re inside the car to begin journey to destination. Minor/friend can share ETA with you or their friends.

    I’ve done it many times when I’m alone and traveling to unfamiliar destinations . Also can ask for no conversations from driver if they don’t want to interact.


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    Mummy to DS1-6/11 and DS2-1/14

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