Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 11-27-2017, 12:59 AM #11
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Default Know the feeling well

I think we have all been there a time or two unfortunately. I still don't get the help I need a lot. Funnily enough more family members and friends have not only offered help, but actually followed through with it now that I have my back issues. I guess it's more understandable or relatable or something. My mother is on the other side of the state but was supposed to come help me take care of my house and kid after my lidocaine treatment for a few weeks but backed out 2 days before my procedure, get this, because if she did she couldn't afford cigarettes for the rest of the month lol.
One thing I have learned is that if someone comes to help, it's because they can or want to. Don't beat yourself up when they have offered. I'm willing to bet that if the situation was reversed that you would be more than happy to help a friend or family member in need! You can only do the best you can within your own limits. It is also okay to NOT be okay sometimes. With CRPS or any other debilitating condition, we will have our down days. Just remember to love yourself and try to focus on the things you CAN do. I hope you find some relief soon hun!!!
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Old 11-27-2017, 04:54 AM #12
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I'm not sure if there is a way to avoid it, but I do think my disability and requiring my son to be mindful of my hypersensitivity effected him. Maybe in both positive and negative ways, but if it's possible to shield our children it's may e better? The best I could do was work towards my highest level of function and save time for him when I was feeling my best.
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Old 11-27-2017, 03:05 PM #13
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I think that we can't shield our children. We can be reasonable in our expectations, and we certainly don't want to overwhelm them. But hiding things from them... they know. When things were getting bad with my husband, I was worried about the kids, and I bought a few books about what to do when a parent is chronically ill. One thing that came up over and over was that the kids always knew something was up, and not knowing WHAT that thing was, was worse than getting an age appropriate explanation.
Of course our children do need our time and attention, and it is important for each of us to find our own ways to do that w/in our own pain and physical limitations. But if you brainstorm and think of things you CAN do instead of focusing on the can't, you will find that there are always options (lessons from my functional restoration program!)
With their dad being now completely a quad and me being somewhat disabled too, my kids have to adapt. But living this way makes them more aware of disability and therefor far less likely to treat people with disabilities as people who are "less than" or looking through them, etc. They have more compassion and sensitivity than other kids their age. While they are pain in the butt kids, when I need help, or their dad needs help, they are always willing to do what is needed without complaining.
And yes, they have chores, partially because I can't do those things. But honestly they would have had those chores anyway at some point, because that is what I believe in.
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Old 11-30-2017, 06:29 AM #14
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So...my daughter just turned 3 and she definitely understands the concepts of mommy hurts and mommy needs to rest and I feel like she does really good with this but she's also just 3 and is easily frustrated when she wants something from me I can't do. Shes really into playing with "guys" now (Mickey figures, Lego guys, etc) and I can't always hold them or can't hold in both hands or can't move my arm much to play with them. Most of the time she's ok when I say I can't do it but sometimes she tries to force the guys in my hands or cries when I say I can't and says. "But I just want to play with you!" That's so hard...she really is sweet and that breaks my heart. She rebounds fast...because she's 3 and doesn't hold a grudge...lol...but it still makes me sad. Also hard is that if she does bump me or hurt me...she says sorry and hugs me. I don't want her to feel bad for just being a kid, you know? Usually she did nothing wrong...just normal kid stuff...so I hate that she feels bad about it. She really is a sweet heart and things are gradually getting easier as she gets older. She can do little things for me, like bring me stuff or put stuff in the garbage, etc, and is getting better at independent play. But play time is the least of the issues. Necessary things like lifting her out of bed, changing her diaper, getting her dressed, cooking her food, etc...those are the things that take a daily toll on me more than anything.
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Old 11-30-2017, 11:25 AM #15
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I so understand how you feel Catra. I feel that way too sometimes. I just keep reminding my family and friends how much pain I am in and that I'm doing the best I can. That's all we can do is our best. I know it hurts when they still just don't "get it". Nothing about having rsd is fair. When I am feeling low about having rsd and how I am treated I go in my room and just keep to myself and watch some shows that make me laugh. And I try to remind myself that whatever I am able to do is good enough. And then I vent to my family here at NT to help me get through the pain I am feeling. I Hope you know that you are not alone and that you are very much appreciated for all you do to help others here at NT. And I hope you have a better day today. Do something special just for yourself today. You most definitely deserve it. Hugs and Prayers.
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Old 11-30-2017, 09:57 PM #16
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I'm so sorry ... I know it is heartbreaking to not be able to play when you want to just do those simple things with your daughter. Kids are resilient but it still feels bad in the moment.
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Old 11-30-2017, 10:41 PM #17
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Catra, I have no idea what age they recommend potty training now but my son had to be potty trained by two and a half to start preschool and it wasn't difficult. Have you tried her in pull ups yet? Maybe she could manage those?
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Old 12-01-2017, 01:18 AM #18
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Quote:
Originally Posted by LIT LOVE View Post
Catra, I have no idea what age they recommend potty training now but my son had to be potty trained by two and a half to start preschool and it wasn't difficult. Have you tried her in pull ups yet? Maybe she could manage those?
Pull ups will be the back up if this weekend doesn't go well (going to start potty training tomorrow). She can hold it all night and wake up dry...so it's probably well past time to potty train her...but between my physical difficulties and everything else it was just more convenient to NOT potty train her (the thought of having to clean accidents or try to get to the bathroom quickly while out and changing clothes multiple times a day and extra laundry all still have me wondering if it's worth it...lol). But the way I see it...it's either train her now or it will have to wait until February. My husband is of the absurd opinion that she will just decide to start using the potty and magically be potty trained on her own with no accidents. He is LITERALLY no help in this department so it's got to be me or nothing. I THINK I am ready to try it this weekend and if it doesn't take then we'll just have to wait and that's all there is to it. Not going to stress too much...it will either work or it won't.
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Old 12-01-2017, 12:28 PM #19
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This video has some good tips: Potty training girls (ages 3 to 4) | BabyCenter.

There is no reason to stress about this. If she struggles she can wear pull ups at night and or when you go out to avoid accidents but it'll help you if you no longer have to change diapers. The bigger she gets the harder this must be for you.

She really is getting old enough where you don't need to lift her out of bed either if the setup is for her height. You can come sit on the bed and talk to her, sing to her, turn on music, etc.
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Old 12-01-2017, 06:54 PM #20
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Quote:
Originally Posted by LIT LOVE View Post
This video has some good tips: Potty training girls (ages 3 to 4) | BabyCenter.

There is no reason to stress about this. If she struggles she can wear pull ups at night and or when you go out to avoid accidents but it'll help you if you no longer have to change diapers. The bigger she gets the harder this must be for you.

She really is getting old enough where you don't need to lift her out of bed either if the setup is for her height. You can come sit on the bed and talk to her, sing to her, turn on music, etc.
She's still in her crib. She doesn't try to get out and really likes it. Sleeps 10-12 hours a night...so I really don't want to take her out of the crib yet because I KNOW my husband won't help with putting her back in bed and her room is upstairs and I sleep downstairs. Maybe after the DRG that will change though...but for now we are pretty set on sticking with the crib vs messing with her sleep routine.
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