Impish Posted November 12, 2012 Posted November 12, 2012 I've got loads of airmiles, more than enough for a laptop...haven't brought myself to actually ordering that yet. Anyways. Where we're moving, there's a large zoo that we've always talked about taking the kids to. Airmiles has both zoo passes, and something called Zoolights...it's a holiday event, over a 1.5 lights, interactive, apparently quite the thing. Here's my problem. W/either the zoo pass or the Zoolights, I cannot go. It's not that I don't want to, I would love it, but there's no way I can hack a day of walking (in terms of the zoo pass) or be out at night in the cold for the Zoolights. I'd be in shrieking pain long before I could get out of there, and imo, that would completely ruin the experience, everyone needing to worry about how *I* am doing. (I'm honestly sick to death of RSD impacting our lives like this.) Zoolights runs from Nov 23-Jan 5. I'm thinking of giving it to my family as a gift, which is why I'm asking you guys instead of Wolf. Would you get your family a gift that you couldn't participate in? Wolf and the kids tend to be disappointed and feel bad when I can't/don't go on stuff like this, so it wouldn't be a complete yippee kinda thing, it would be somewhat...bittersweet? Or just get the passes and make it not a gift? Quote
1bassoon Posted November 12, 2012 Posted November 12, 2012 Me? I'd give it to them. But I'd also wrap up coupons with it, for a special dessert hosted by mom, or special dinner. . . something to do afterwards, together as a family, where they can share their excitement with you. Does that make sense? What a sweet idea! Quote
momofkhm Posted November 12, 2012 Posted November 12, 2012 Me? I'd give it to them. But I'd also wrap up coupons with it, for a special dessert hosted by mom, or special dinner. . . something to do afterwards, together as a family, where they can share their excitement with you. Does that make sense? What a sweet idea! :iagree: Quote
Impish Posted November 12, 2012 Author Posted November 12, 2012 Give it as a gift, or give it ahead of time as a non gift? That's what I'm debating. I'm ordering Zoolights for sure, just the timing of it I'm debating. I'll also order zoo passes, b/c they're good for a yr, but neither of these things I can go w/them for. I admit, it's kinda painful. Zoolights sounds like exactly the kind of thing I'd adore attending...*sigh* http://www.calgaryzoo.com/zoolights/?utm_source=zoolights%2Bspecial%2Bevents%2Bpage&utm_medium=website&utm_content=zoolights%2Blanding%2Bpage%2Blink&utm_campaign=Zoolights Quote
Impish Posted November 12, 2012 Author Posted November 12, 2012 I'd do it. Is there any way you could use some sort of motorized cart or chair? I like the idea of planning something together for after. :grouphug: No. A motorized scooter or such req 2 hands for steering. Quote
Annie G Posted November 12, 2012 Posted November 12, 2012 I'd give it as a gift. And that's very mature of you to want to go but realize you can't...and yet want dh and the kids to be able to go. I'd try to make a special dinner for when they get home, and spend some time hearing all about their visit. Hopefully they have a digital camera and can take some photos so you can see some of their fun. Not being familiar with RSD, please excuse this q if it comes out wrong. Is there a way you could go for part of the event? Like, would an hour and a half outside do you in? I think giving it as a gift is a lovely idea. Your kids are learning a lot about gift giving and about how much you love them. Quote
FaithManor Posted November 12, 2012 Posted November 12, 2012 Me? I'd give it to them. But I'd also wrap up coupons with it, for a special dessert hosted by mom, or special dinner. . . something to do afterwards, together as a family, where they can share their excitement with you. Does that make sense? What a sweet idea! This is how I would frame it. "You all need to get out of the house so I finish this special thing for you so daddy is going to take you to a special event at the zoo!" Sound all excited and mysterious. While they are gone, make hot chocolate, special treats, "I'm so very thankful for you cards" (list the traits of each person that you are grateful for), hang up Christmas decorations that you can manage one handed, lay out clothes for everyone to change into for a family Christmas pic, put a santa hat or Dr. Seuss hat or something fun like that on Boo, garland on the dogs, and maybe a scavenger hunt for little homemade treats. Last year I read "A Christmas Carol" by Dickens every night by candlelight. The boys loved it and asked if we could do it again this year so I take that as a sign of success. Try to make it something you look forward to because of how the day will end. :grouphug: Faith Quote
Impish Posted November 12, 2012 Author Posted November 12, 2012 I'd give it as a gift. And that's very mature of you to want to go but realize you can't...and yet want dh and the kids to be able to go. I'd try to make a special dinner for when they get home, and spend some time hearing all about their visit. Hopefully they have a digital camera and can take some photos so you can see some of their fun. Not being familiar with RSD, please excuse this q if it comes out wrong. Is there a way you could go for part of the event? Like, would an hour and a half outside do you in? I think giving it as a gift is a lovely idea. Your kids are learning a lot about gift giving and about how much you love them. Basically, the way RSD is, the nerves in my rt arm/hand are constantly telling my brain that my arm is seriously injured. And it flares up, to the point where being curled up in a ball and screaming in my throat is my only ability. Cold sets off a flare up. Hand swells, turns a purple blue. Being on my feet too long (and 'too long' is unpredictable...could be 15 mins, could be longer, could be shorter, no way of telling) makes my arm feel like it's ripping out of the shoulder socket. when a flareup starts, it lasts for hrs, and all you can do is get through it...there's no 'turning it off'. Meds keep me from dying, but that's about the extent of it. Plus, I don't drive, so I don't have the ability to go for a short time and leave. It's not just being outside, although, depending on the weather, that alone could do it, it's also being on my feet. Quote
Impish Posted November 12, 2012 Author Posted November 12, 2012 What about a wheelchair? I know that would require someone, but gee there must be something out there. No. First, Boo is in a stroller. 2nd, me being in a wheelchair would be more hassle, more depressing, more upsetting than just staying home. Honestly, I think the Littles would be very upset at the sight of me in a wheelchair...and I can't imagine making Wolf or Diva push me around all day...I couldn't wheel it myself, obviously. Don't get me wrong, I'm not upset you suggested it, I've thought about it...and no, it just wouldn't work. I want my family to have fun, and having to push my fat butt around in a chair would absolutely NOT be fun! :tongue_smilie: Quote
Night Elf Posted November 12, 2012 Posted November 12, 2012 I would consider the Zoolights and the passes to be great gifts for the kids, but not really for Wolf. I'd talk with him about it as a gift the both of you would give to the kids. I also think it would be a little less awkward for you since you're feeling bad about not being able to go. If the gift comes from Wolf as well, it's him taking the kids to their gift rather than you just handing over the whole package to them as a group. Does that make sense? I don't think I'm explaining right. It makes more sense in my head. :tongue_smilie: Quote
Annie G Posted November 12, 2012 Posted November 12, 2012 Wow. That's quite debilitating- so sorry you have to deal with this. Thanks for the info, though. I need to be more educated on this kind of thing. Quote
Tammyla Posted November 12, 2012 Posted November 12, 2012 It would be a beautiful gift for the kids, but I'd think of something else for dh in this case. Imo, if it caused sadness for them to go enjoy it without you, I'd talk it over with dh and maybe look for another gift. Quote
Impish Posted November 12, 2012 Author Posted November 12, 2012 Wow. That's quite debilitating- so sorry you have to deal with this. Thanks for the info, though. I need to be more educated on this kind of thing. Honestly, it's a pretty rare disability. Other than 2 specialists, and my orig GP that told me what it was, I've had to explain it to every other Dr I've ever seen. Even ER drs. It goes by 2 names. RSD = Reflex Sympathetic Dystrophy. Insurance cos lobbied and succeeded in getting it changed to CRPS = Complex Regional Pain Syndrome. They found that in court, 'Dystrophy' made it sound like a serious, legitimate disability (which it is) whereas 'Syndrome' could just be in someone's head. Depending on who you're dealing w/depends on which name they use, but they're the same thing. Quote
Impish Posted November 12, 2012 Author Posted November 12, 2012 I would consider the Zoolights and the passes to be great gifts for the kids, but not really for Wolf. I'd talk with him about it as a gift the both of you would give to the kids. I also think it would be a little less awkward for you since you're feeling bad about not being able to go. If the gift comes from Wolf as well, it's him taking the kids to their gift rather than you just handing over the whole package to them as a group. Does that make sense? I don't think I'm explaining right. It makes more sense in my head. :tongue_smilie: I'm thinking of it being a Santa gift. Quote
Starr Posted November 12, 2012 Posted November 12, 2012 I think giving it as a Santa gift is a great idea. How about Santa giving you a movie you love to watch while they are gone? The nurse in me wants to encourage you to think about a wheel chair for some events. They aren't hard to push around and you could get out and walk when you want to. My dm finally does this for some events.That way she can go, keep up and not be in pain. :grouphug: Quote
Jan in SC Posted November 12, 2012 Posted November 12, 2012 I think I would get the regular zoo membership and then go to some of the places that have drive thru lights, and maybe the downtown area. Then you could go out for dessert/ hot chocolate. That way, you could ride with them. Our zoo has the lights and it's really cool, but my children like the drive thru one better. I can't be out when it gets really cold, either. (Our really cold is probably a summer vacation for you!) Quote
Impish Posted November 12, 2012 Author Posted November 12, 2012 I think I would get the regular zoo membership and then go to some of the places that have drive thru lights, and maybe the downtown area. Then you could go out for dessert/ hot chocolate. That way, you could ride with them. Our zoo has the lights and it's really cool, but my children like the drive thru one better. I can't be out when it gets really cold, either. (Our really cold is probably a summer vacation for you!) Airmiles only has daily admission, not memberships. Both these events are free w/airmiles. Starr, I appreciate what you're saying. But, there's already a stroller to push. Quote
TheReader Posted November 12, 2012 Posted November 12, 2012 Airmiles only has daily admission, not memberships. Both these events are free w/airmiles. Starr, I appreciate what you're saying. But, there's already a stroller to push. At risk of continuing to beat a dead horse, but if you were in a wheelchair, would Boo at all be content/able to sit in your lap? Or the issues with your arm would prevent you from keeping him secure? Could one person push you in the wheelchair and another push Boo in the stroller? I ask because, as much as you hate the idea, when my stepmom made the effort to come with us, wheelchair and all, the boys only ever remembered that she was THERE enjoying the day with us, and not that she was in a wheelchair. She hated every minute of having to use a wheel chair. Every minute. She would stay home from church, even, which was her biggest passion. But she'd get in that blasted thing to go with us to the park and eat ice cream (even in the heat which was debilitating to her) or she'd come in the car, sit in the car with the car running, A/C or heat on as needed, and a book to read while we did hikes and things that she just couldn't do. In the end, the fact she was THERE is all anyone remembered and those memories are all the more priceless because of how big a hassle it was for her, how much she hated it but set those feelings aside to be with us, to be with the boys. I realize that such might not work for you, right now, for this particular thing and I don't want to make you feel badly if you just really cannot go. But it sounds like it really troubles you that you have to sit out, and I just want to encourage you that sometimes going, even with the crummy accommodations you'd have to make to be able to do so, can still be a warm, sweet, precious memory to those who love you and not a hassle, sad, horrifying memory as you fear it might be. If I'm way off base, forgive me. Whatever you do, I do think your kids will enjoy it and know beyond a doubt you love them; that's evident in all of your posts, and if we can see it, I know they can too. :grouphug: Quote
katilac Posted November 12, 2012 Posted November 12, 2012 I think giving it as a Santa gift is a great idea. How about Santa giving you a movie you love to watch while they are gone? The nurse in me wants to encourage you to think about a wheel chair for some events. They aren't hard to push around and you could get out and walk when you want to. My dm finally does this for some events.That way she can go, keep up and not be in pain. :grouphug: Airmiles only has daily admission, not memberships. Both these events are free w/airmiles. Starr, I appreciate what you're saying. But, there's already a stroller to push. Surely Diva could push the stroller? Even the littles could help with that when it isn't too crowded, etc. I'm not trying to harass you or pretend I fully understand your situation, but it seems like having a stroller and a wheelchair on family outings is going to be the norm for a while. I'd work to figure it out, maybe ask everyone for their input on how best to manage it. Don't worry overmuch about the kids' reaction to you being in a wheelchair. Yes, it might upset them at first, but plenty of parents are in wheelchairs. They will adjust. Again, I know there is a lot to think about, but these two issues can be addressed. Quote
Impish Posted November 12, 2012 Author Posted November 12, 2012 At risk of continuing to beat a dead horse, but if you were in a wheelchair, would Boo at all be content/able to sit in your lap? Or the issues with your arm would prevent you from keeping him secure? Could one person push you in the wheelchair and another push Boo in the stroller? I ask because, as much as you hate the idea, when my stepmom made the effort to come with us, wheelchair and all, the boys only ever remembered that she was THERE enjoying the day with us, and not that she was in a wheelchair. She hated every minute of having to use a wheel chair. Every minute. She would stay home from church, even, which was her biggest passion. But she'd get in that blasted thing to go with us to the park and eat ice cream (even in the heat which was debilitating to her) or she'd come in the car, sit in the car with the car running, A/C or heat on as needed, and a book to read while we did hikes and things that she just couldn't do. In the end, the fact she was THERE is all anyone remembered and those memories are all the more priceless because of how big a hassle it was for her, how much she hated it but set those feelings aside to be with us, to be with the boys. I realize that such might not work for you, right now, for this particular thing and I don't want to make you feel badly if you just really cannot go. But it sounds like it really troubles you that you have to sit out, and I just want to encourage you that sometimes going, even with the crummy accommodations you'd have to make to be able to do so, can still be a warm, sweet, precious memory to those who love you and not a hassle, sad, horrifying memory as you fear it might be. If I'm way off base, forgive me. Whatever you do, I do think your kids will enjoy it and know beyond a doubt you love them; that's evident in all of your posts, and if we can see it, I know they can too. :grouphug: Surely Diva could push the stroller? Even the littles could help with that when it isn't too crowded, etc. I'm not trying to harass you or pretend I fully understand your situation, but it seems like having a stroller and a wheelchair on family outings is going to be the norm for a while. I'd work to figure it out, maybe ask everyone for their input on how best to manage it. Don't worry overmuch about the kids' reaction to you being in a wheelchair. Yes, it might upset them at first, but plenty of parents are in wheelchairs. They will adjust. Again, I know there is a lot to think about, but these two issues can be addressed. Thank you both for the encouragement. No, I couldn't hang on to Boo 1 armed and keep him secure. He's a squirmy kinda kid at this point, and there's no way he'd be content like that very long. It's likely more of a pride thing for me than anything else. My family already has to deal w/RSD in so many ways, the idea of someone having to push me around just makes my stomach churn. I'd rather miss out on the event than to be a burden that takes the fun out of things for them. But, I will talk to Wolf about it, get his input. Of the two of us, he's the far more rational, reasonable person when it comes to this topic. Quote
FaithManor Posted November 12, 2012 Posted November 12, 2012 Surely Diva could push the stroller? Even the littles could help with that when it isn't too crowded, etc. I'm not trying to harass you or pretend I fully understand your situation, but it seems like having a stroller and a wheelchair on family outings is going to be the norm for a while. I'd work to figure it out, maybe ask everyone for their input on how best to manage it. Don't worry overmuch about the kids' reaction to you being in a wheelchair. Yes, it might upset them at first, but plenty of parents are in wheelchairs. They will adjust. Again, I know there is a lot to think about, but these two issues can be addressed. Guys, it's the combo. It's not just walking, it's the cold she'll be exposed to as well. It is just not possible for her. Temps are already extremely cold in her region. I think yesterday was below zero. So, they'll all be heading to the zoo during winter weather. She can't be outside in that for any length of time or her pain levels are going to go off the charts. So, the wheelchair thing will not work. The pain is excruciating. Some people with this disease actually feel pain akin to being stabbed repeatedly, others that their skin is on fire. It's not like an achyness that you can mind over matter for the sake of your family. It's the kind of pain that would send most of us begging for morphine, darvacet (if it were only still on the market), vicodin, and all of it in a great big cocktail followed by a whiskey chaser. So, Imp avoids doing things that are known triggers in order to be the super great mom that she is! Faith Quote
Impish Posted November 12, 2012 Author Posted November 12, 2012 Guys, it's the combo. It's not just walking, it's the cold she'll be exposed to as well. It is just not possible for her. Temps are already extremely cold in her region. I think yesterday was below zero. So, they'll all be heading to the zoo during winter weather. She can't be outside in that for any length of time or her pain levels are going to go off the charts. So, the wheelchair thing will not work. The pain is excruciating. Some people with this disease actually feel pain akin to being stabbed repeatedly, others that their skin is on fire. It's not like an achyness that you can mind over matter for the sake of your family. It's the kind of pain that would send most of us begging for morphine, darvacet (if it were only still on the market), vicodin, and all of it in a great big cocktail followed by a whiskey chaser. So, Imp avoids doing things that are known triggers in order to be the super great mom that she is! Faith Thanks Faith :grouphug: I've described it in an article for a chronic pain magazine as having a dragon made up of broken Coke bottles in my arm. Just by it's existance it hurts. It's breath burns. But, there are times when it's actively trying to get OUT of my arm, and it's like I can feel the arm tearing apart from the inside, and burning...broken glass on fire. I swear to you, I've looked down and expected to see the glass tearing it's way out through the skin. It was -22C here yesterday. I don't know what it is in F, other than darn freaking cold! The wheelchair thing I'm going to talk to Wolf about, not for the upcoming Zoolights, but the zoo passes are good for 12 mths, so that would wait until more pleasant weather. I'm still really not inclined to use one, but I *will* discuss it w/him and see what he says, so that I don't run the risk of my pride making decisions. Quote
nrg Posted November 12, 2012 Posted November 12, 2012 Dear Imp: My mom was in a wheelchair all of my life long before any accommodations for disabilities, so we did many things without her. She hustled us out the door cheerfully, or sometimes came along and waited in the car. We took pictures (that took time to have developed) and memorized everything and looked for handicapped accessible bits for future reference for the big retelling when we got back. She always made a big deal of greeting us with food and hearing all about our adventure and how much fun we had. It was a really BIG deal when she could come. We would be so excited we couldn't sleep the night before. She has been gone for many years now, and I still look for access just about everywhere I go. It's really okay to sent them without you. Set up a party-like scene for the return so everyone can tell you all about it. Assign Miss Diva to take pictures of everyone and everything. Have them journal or make a scrap book page to share with you. This situation really brings back some tender memories for me. My mom was a wonderful example of dealing with terrible situations, and I can see that you are that mom, too. I wish you all the best, and the miracle of pain relief. Quote
katilac Posted November 12, 2012 Posted November 12, 2012 Guys, it's the combo. It's not just walking, it's the cold she'll be exposed to as well. It is just not possible for her. Temps are already extremely cold in her region. I think yesterday was below zero. So, they'll all be heading to the zoo during winter weather. <snip> Faith Yes, I do get that, but Imp specifically mentioned these two factors (wheelchair along with stroller, and kids' reaction to it). I'm not trying to encourage her to attend any particular event, but rather to address the overall factors for the long term. I hate to see anyone resign themselves to doing less due to what is essentially logistics. Definitely talk to Wolf about it - not one conversation, but an ongoing dialogue. We have some family members with mobility and other health issues, and it seems like the main trick is to accept that the first few outings are going to be bumpy as you figure things out. Like anything, it gets easier the more you do it. Quote
Impish Posted November 12, 2012 Author Posted November 12, 2012 Yes, I do get that, but Imp specifically mentioned these two factors (wheelchair along with stroller, and kids' reaction to it). I'm not trying to encourage her to attend any particular event, but rather to address the overall factors for the long term. I hate to see anyone resign themselves to doing less due to what is essentially logistics. Definitely talk to Wolf about it - not one conversation, but an ongoing dialogue. We have some family members with mobility and other health issues, and it seems like the main trick is to accept that the first few outings are going to be bumpy as you figure things out. Like anything, it gets easier the more you do it. I appreciate the encouragement. My knee jerk reaction is, "No!" tbh. That's why I'll talk to Wolf about it, and take it from there. Quote
swellmomma Posted November 12, 2012 Posted November 12, 2012 Guys, it's the combo. It's not just walking, it's the cold she'll be exposed to as well. It is just not possible for her. Temps are already extremely cold in her region. I think yesterday was below zero. So, they'll all be heading to the zoo during winter weather. She can't be outside in that for any length of time or her pain levels are going to go off the charts. So, the wheelchair thing will not work. Well that's an understatement. I don't know what she was getting south, but in my part of the province it was -22C with the windchill yesterday. And that was a warmer day from the last 4. Friday was -20C BEFORE the windchill. I have been to that zoo. It is HUGE. I don't have those sorts of pain issues and I could hardle walk by the end I was so exhausted. Even my kids legs were starting to hurt. And an event like zoolights will draw huge crowds. Even if she managed the cold and used a wheelchair there is a very high risk of being jostled. If this was an arthritis pain or someting like that I suspect Imp would be there in a heart beat because she could take meds before and after to lessen the impact. But with this particular pain taking meds is like trying to put out a fire with your spit. Very little impact. Imp and I have talked about her RSD before and had a discussion about the impact of amputating the arm. (Turns out it would not help) but that is how debilitating it is. She has put serious thought into cutting off her arm. While the idea of using a wheelchair is an awesome one for so many disorders I don't think it would work for this situation. I think the idea of giving it as a santa gift and having wolf take them is a great one. You can rest up a bit while they are gone and then once they come home you all can have hot chocolate and christmas cookies and watch a movie together. Your daddy addicts will have so many exciting things to tell you that they saw when they get home. If they start to worry about you not coming laugh it off and say Santa gave it for you kids, he knows mommy needs to stay home and get the hot chocolate ready. Quote
Tap Posted November 12, 2012 Posted November 12, 2012 I understand your situation all too well. My family spend many wonderful days on a friends new 40ft sailboat. I couldn't go because the constant shifting will flare my back up. Nerve pain sucks !!!!!!!!!! I dont want my family to miss out because of me. They already make ao many sacrafices due to my back I don't want them to miss everything. We go to zoo lights at the oregon zoo. I live in the pnw where it rains one day and is sunny the next. I would give them the tickets early so they would have more options for a nonraining night. It is aways so cold at zoo lights I would want to give the the best night possible. Quote
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