[Vrae]

My daughter has struggled with some sensory issues for some time now. She has trouble with clothes and food is a big deal too. She is tactile defensive.

Forever it seems she has been saying she was having double vision sometimes. I've had her eyes checked I don't know how many times. Always showed good vision. It wasn't until today that it occurred to me ... well duh? Seeing is a sense Vrae... hello? I also know from my own experience that my vision gets blurred. Oh how I miss my mind.

[Nanc]

Don't beat yourself up Vrae, at least you realized it I miss my mind so much too

[moosey2me]

Originally Posted by Vrae

My daughter has struggled with some sensory issues for some time now. She has trouble with clothes and food is a big deal too. She is tactile defensive.

Forever it seems she has been saying she was having double vision sometimes. I've had her eyes checked I don't know how many times. Always showed good vision. It wasn't until today that it occurred to me ... well duh? Seeing is a sense Vrae... hello? I also know from my own experience that my vision gets blurred. Oh how I miss my mind.

Sorry you both are going through so much..I will pray for you both

[Lottie]

Hi Vrae - be as gentle to yourself as you would be automatically to a puppy. You deserve that much as a minimim. You are a beautiful mom and as long as you approach things from a position of love you cannot go wrong.
Hope your youngest is improving with each day.

[Russell]

Don't feel alone Vrae. My vision sometimes blures as well. Especially when doing puzzles which is one of my favorite pastimes...

[chaos]

Does she have sensory integration disorder? I know I have it a little, my daughter has mild autism and has the opposite, sensory seeking. I have issues with food, people touching my head, I've always been super sensitive to touch. These were all issues before the CRPS.

Part me has wondered if my extra fine sensitivity has contributed to the CRPS. Vrae, didn't you say your daughter has it too? Or was that somebody else?

[Brambledog]

You're not a moron Vrae. You are so far from being a moron... Your daughter is lucky to have you supporting her. And don't forget that making the odd mistake is reassuring to her that people aren't perfect, and making the odd mistake is normal and OK. Don't beat yourself up so much

Take care of yourself too...we can all fall into the trap of focusing so much on our loved ones' problems that we forget to look at ourselves sometimes. It's not selfish at all, because we need to feel as well as possible to be able to support our families. It's a circular thing and you can do both!

Give yourself a little hug sometimes and reassure yourself that you're doing ok there... (btw, hugs look very similar to a reasonably-sized chocolate bar at times )

Bram.

[Vrae]

Thanks so much to all of you. I just get ticked off that my mind doesn’t work the way it used to (much like my body) and over the course of the last couple of weeks, it’s been frustrating at best. Before I talk with doctors or specialists I have to give my 30 second elevator speech (I have one now). “I have a neurological disease that is rare and affects my minds ability to recall specific details about things, or I get lost while we’re talking…. Please forgive me. “ I’m a note taken fool right now, and overwhelmed at the sheer volume of professionals and paperwork and research I am dealing with right now for her. Of course I love her and she’s worth whatever needs to be done. I hope that just goes without saying. I guess I’m complaining here because you all get CRPS’ debilitating affects and trying to function in spite of them.

They have a vision specialist that she will be seeing that will help decide what the actual cause is. But knowing what I know about myself and my vision issues with CRPS… a light bulb went off. Hot damn! My brain does still work from time to time.

I am finding that I am having to close my eyes while I am trying to recall or relay information quickly.

I’m trying to take care of myself, really I am. I am soaking in my tub fairly regularly now. That allows me at least time to exhale and get my oooommm (zen) on. That’s total me time. It’s just remarkable how exhausted I feel daily. It’s also remarkable what I have accomplished in the last two weeks. Okay… yes! I rule!! LMAO… ahhh. And oh yeah, there’s been some chocolate intake too. Thanks again to all of you!!

[Vrae]

Originally Posted by chaos

Does she have sensory integration disorder? I know I have it a little, my daughter has mild autism and has the opposite, sensory seeking. I have issues with food, people touching my head, I've always been super sensitive to touch. These were all issues before the CRPS.

Part me has wondered if my extra fine sensitivity has contributed to the CRPS. Vrae, didn't you say your daughter has it too? Or was that somebody else?

Hi Chaos, I didn't know what that was and just did a quick search. She does have some of those issues / symptoms. No she doesn't have CRPS and I pray she never does. But I have to be honest that it has crossed my mind that she could perhaps be more susceptible due to my Dx.

All the sensory issues are secondary to what she is being treated for, but have been enhanced since this whole thing began a couple of weeks ago.