Couldn't help but think of my/our disease when I saw this in the hospital gift shop. I am exhausted right now and have been for what feels like months.

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Oh yes indeedy....Vrae you've done it again I want this on a shirt.

Bram.

Vrae, you're back! That just about sums it all up, doesn't it? How is your daughter? Is she home with you yet? Missed your witty posts this past week. :-)

I think I say that to myself every single day!!!! That's funny!'
Heather

Lord knows I am trying to keep some kind of sense of humor because my life has been just ridiculously busy and somewhat overwhelming for a while now.

Brace yourself, I’m about to ramble on again… CRPS does nothing but get in the way of my life, as you all know, all too well.

Things have been serious, and scary with my daughter. She was released from in-pt. Friday night after being there all week, and will have all day out-pt treatments next week, with the earliest full release of perhaps wed. I would tell you her Dx but I’m just not sure I’m ready, and it would take some time writing it and I’m afraid it would be just too emotional right now for me.

I’m not sure that my disease has ever been so in my face as it has been this week.

Monday I found out that she would be in-pt for a week. My husband was great as usual and brought a few things from home for her first night stay. I am at home the second day trying to pull together for her several days of clothes and more comfort items, etc. First I showered. Then I tried to put a little makeup on as to look somewhat human, alive and try not to scare the medical staff.

My back has been giving me grief for a while now which is a bit unusual but becoming constant, leg spasms… and all that other great CRPS stuff too. I have been really worried about my daughter, yet trying to remain as calm as possible as not to add insult to injury and have things flare even more and make me even more immobile, uncomfortable and more difficult to try and help her. Damn that’s HARD (keeping emotions or CRPS in check)!

Anyway, so I’m in her room getting things together, and she has requested some slippers that for the life of me I can’t seem to find. So there I am on the floor trying to look under her bed, closet, etc. Then I just sit there for a minute wondering how the hell I’m going to manage not only getting up off the floor but everything… CRPS has never been so in my face at that moment. The recent fainting/collapsing was pretty in my face too, but now I am physically struggling just to be a mom when my kiddo needs me the most.

I’ve been a mama for 25 years now and my eldest was seriously ill with asthma for the first 7 or 8 years, which is what brought us to Denver as one of the world’s leading respiratory and immunology hospitals is here, National Jewish. And Lord knows all the other kids have had their fair share of scare you to death moments too. My point is that I used to be able to just pick up and start running my buns off chasing all that needed to be done, and do it well. Now, just trying to get myself cleaned up and a bag for her, and trying to make sure I’ve got enough meds on me for whatever CRPS might deal out in a day, trying to think, think, think in a hurry (my mind sucks anymore ) and yadda, yadda, yadda. All while moving, walking, driving, etc has been SO HARD. That’s really an understatement. I’m exhausted and I hurt, and I never did find the damn slippers . Well that’s not true, I found ONE… lol.

OH! And here’s some irony… Some of you know that I have been trying to complete a video edit that I haven’t touched, oh let’s see…. Since I think Nov. I am now in the hospital with my daughter and the man who is the CEO of this hospital… Yep! It’s his daughter’s wedding video I am supposed to be working on and have missed several deadlines. Awesome! I feel sick about this edit not being done and yet life has been nuts for too long now, all completely out of my control.

I’m looking around my house today wondering if my inside Christmas décor will be there until Valentine’s Day, or hell.. it’s Colorado, maybe we’ll just leave it all up year round?

Thanks for the vent. I needed that! I hope things are going okay for everyone else, or at least stable. I am counting down the days to my new neuro doc appt. 01/24!

Crumbs Vrae, life is poking you with a great big stick at the moment.... I'm so sorry the situation with your daughter is worrying you so much, there's nothing worse than fearing for your children. Being ill yourself is hard enough as you say, but when it's your child you just want to take it all away from them and have them well again instantly. If only it could work like that hey?

I hope she is doing ok, and that whatever she has isn't too serious (although obviously I'm well aware from how you wrote about it that it's not as simple as that...). You have to be kind to yourself here Vrae, you might get pretty close on the normal human scale, but you aren't a superwoman, not quite , and you are dealing with a major disease yourself. I know exactly what you mean about being used to lurching into crisis mode and just getting all those urgent things done quickly and efficiently. I think those times are where I notice my CRPS most as well - mainly because I feel like I'm the only one who really HAS a crisis-coping mode! Everyone else stands about getting in the way and not knowing where things are

The wedding edit/hospital CEO/omg moment thing I had to smile wryly at - what are the chances???! Did you speak to him? I'm sure he'd understand the delay given what you're dealing with Vrae. You're a good person and I bet you're doing a good job on that edit when you get the chance.

Have an iHug, get one of those deep breaths into your lungs, and hoist that smile up on to your face girl . You are Vrae, Slayer of Problems and Mistress of all you survey. You can deal with this too. It's just hard.

I wish life was easier for you at the moment, and I hope that you and your daughter are ok. She is lucky to have you

Bram

Aww, Vrae
You so don't deserve all this!! I know the feeling of having the instinct
to take of your kids first, it really doesn't ever change as they grow.

I'm sure the hospital CEO would understand that family & health must
come first sometimes.

You need someone to take care of you!!

We can all sure relate to the picture you took!!

My posts are short but my thoughts with you are not.
Please take care of yourself all you can, we're here for you in spirit

Oh Bram, as always you’re good medicine. Thank you!

You are ALL good medicine for me. What a wonderful group of such lovely people I have found on here. I talk about this group all the time to the non-CRPS people in my life. I have never met anyone in person who shares CRPS, but if I do, I will bookmark the site for them immediately!

Bram, nope… I’m not superwoman and seem to have lost my super-suit Lol. I try, as we all do, and my body is just failing me. That’s why when I saw this bag in the picture in my original post I thought, yep.. it is exhausting and I knew you all might appreciate it, or at least we can try to laugh.

Lottie, yes, I agree… it does sum it all up. Thanks for asking about my daughter.

Heather, I thought it was funny too!

I meant to keep this thread on the light side and didn’t mean to be such a bummer. Life has just been SO STRESSFUL for months now, and this with my daughter has been over the top. It trumps all, and this disease just feeds on that. I really do try and keep a sense of humor because at times that has been all that is getting me through. I have also been, on many occasions through this rough patch, trying to remember to just breathe. Working on staying calm and not let CRPS get the upper-hand. That can feel impossible at times, but I’m trying.

My daughter has been home for the weekend and that has been a wonderful thing. I love her so much and just want her to be healthy and happy. We have a long road ahead of us with recovery for her, but that’s okay, I got this! We're gonna fight like a GIRL! Thank you all for holding my hand!


Now back to a lighter side.... I saw this (attached) and thought it was good for a laugh.

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Thank you so much Di! I feel the love and I so appreciate it!! I had a lawyer once tell me that the first thing they teach you in law school is that life is not fair. That stuck... and it also sucks. But we're going to be okay. She's going to be be okay, it just may take some time to sort through it all. Thanks again hon and hope you're doing okay!

Vrae, I am so you have this worry on top of RSD. My son had an accident 2 years ago and his prognosis was not good. I didn't leave the hospital for 30 days. It was an hour from my house and I just couldn't leave. He had gangrene inside the bone of his leg and had 7-8 surgeries. He has recovered but it could come back any day. It can lay dormant for 60 years or longer, one one day come active. He just turned 22. You are all in my prayers.