mamabunny
DIS Veteran
- Joined
- Oct 11, 2012
- Messages
- 3,834
Yeah, it's me.
I'm so sorry y'all. I did not intend to disappear like that, and - as always! there is a story to be told.
(For the new folks I haven't met yet... Hi! Howdy! Hello! Sorry I missed meeting you before, but I'm back like a bad dream, so... lucky you?
Nah, lucky *me* because I have new friends to meet! Yay!)
Fair warning, this is going to be long, and there will be icky medical stuff (which explains why I haven't been here)
OK. Here we go.
°O° °o° °o° °o° °O° °o° °o° °o° °O°
We went to WDW in late Jan/early Feb of this year. We got pixie-dusted *so hard* at AKL that I am still in shock (Yeah... Savannah view when we had booked standard view; it was totally unexpected and so very delightful) and on top of that, our daughter surprised me with an experience I never thought I would do, at WDW or any anywhere: Dolphins. We got to go behind the scenes at EPCOT to watch the dolphins train, and then go up across the big tanks, and down to an area where the dolphins came right up to us, and we got to pet them, and the trainers showed us up close and personal how and why they trained them to do so many cool things (here's a hint: it's so it's easier to vet check them) and we got our pictures taken with them, and I wore a wet suit... OMG it was just pure magic. It was so overwhelming, and I am still just absolutely delighted every time I think about it. And yes, that experience *is* accessible, completely. (I hope to write a post about it one of these days; it really was just absolutely, deeply profound for me, and I still find it hard to be coherent when I try to talk about it)
The entire trip was a fantastic one; we really didn't have a single bad moment at all. It was just great memories, amazing meals, Adult Beverages ™ and lots and lots of laughter and relaxation. Probably the closest thing I have had as an adult to a "perfect" trip.
°O° °o° °o° °o° °O° °o° °o° °o° °O°
(trigger warning: the rest of this has icky medical stuff. sorry)
As always, we drove down & back; it takes 3 days/2 nights 1 way. On the way home, I noticed what appeared to be an arthritic nodule growing on my left forefinger (pointer finger). It was at the joint closest to the nail, and it grew very rapidly; so much so that by the time we got home 3 days later, I scheduled an emergency appointment with my rheumy to see what she thought, and if we needed to adjust medication.
She thought it was possibly related to gouty arthritis (hang out with me, learn new things LOL) and she added some medication to help control it. Except it continued to grow, and a few days later, I woke up and it had burst overnight.
There was a HOLE in my finger, right at the place where it was most swollen, over the joint, and boy-howdy it was not happy and neither was I. I called my rheumy, she looked at pictures I put up in the patient portal, and she said "Call your hand surgeon, stat". So, I called his nurse, and told her the pictures were in the portal, please ask him to take a quick peek. She looked at the pictures and said "We will work you in today; be here after lunch". Before 5:00 pm, we had surgery scheduled, and very specific instructions about how to keep it infection-free. He diagnosed it as a benign cyst; he said that usually they don't "blow open" like that, but he was going to literally pop it out *and* fix my carpal tunnel on the same hand and the surgery would be less than 7 minutes total. Hide and watch, he said. The earliest I could get on the calendar was 4 weeks out, but we were all comfortable with that.
In the interim, I was learning to do everything with 1 hand again; luckily this time I had my dominant hand free, and it was mostly healed from it's surgery, so that was... great.
Literally in the middle of this part, our adult daughter had to move to another state for her job; when they got to her new place, she literally had the moving people just stack everything in her apartment, and she flew right back home because...
...the cyst continued to grow, and it continued to burst every other day or so. Less than 2 weeks later, they slid me into the surgical schedule for the next day.
What was supposed to be a 7 minute surgery wound up taking significantly longer. His initial plan to "pop" the cyst out (his words) was quickly scrapped when he realized that the cyst had actually grown well down into the finger, was wrapped through the joint and even up behind the nail. Instead of the little "X" incision that he had described to me and my family, he had to completely peel open the finger, and carefully remove the cyst, trying not to damage any more nerves, ligaments or soft tissue than had already been compromised.
Good news: he feels certain he got it all. (fingers crossed, no pun intended)
My poor family was so scared; the last surgery he did for me they literally got the text message that the surgery had started and less than 2 minutes later, got the notification that I was headed to Recovery. This time it took more than an hour, and they didn't know what to think because he had initially thought it would be less than 7 minutes. When I woke up in Recovery, I thought my nurse looked just like Stanley Tucci; he was funny, and swore up & down he was not in the movies. I don't remember much else about that, but when I got back to my family, I saw how bandaged up my hand was, and I knew then that things did not go to plan.
Basically, I lost most of February, and all of March, April & May to all of ...this. I have tried to stay positive, and for the most part I think I succeeded, but there were some pretty tough moments.
Anyway... I no longer have a cuticle on that finger, and some *very* interesting scars that run down my finger towards my hand, including a giant hole that has been slowly healing from the bottom up. It's still super tender where the nerves are trying to heal, and I have to change the orientation of the bandages every day so that the soft tissue comes back properly, and not all lumpy. The hole still gets butterfly bandages in the shape of an "X" to help keep the hole somewhat closed, and encourage it to heal properly as well. I still have weight and usage limitations also. I am a work in progress.
Our daughter was able to shift her report date by nearly a month, so her apartment sat full of her stuff, while she stayed with us at home and helped care for me. Because of some of my autoimmune stuff, my wounds don't always heal like normal; I tend to create LOTS of scar tissue, and any cut or scrape that is over an "active" area of skin will continue to expand, even with stitches (stitches can make it worse, as we learned with my other hand surgery)
I required a *lot* of help, and had a lot of rules surrounding the use and care of my left hand as it heals, and was cautioned that another surgery might be needed since the cyst grew so fast and was so deeply established. The hand surgeon genuinely believes he got the entire cyst, but we will be doing some imaging later this summer to comfirm that, once more of the soft tissue is properly established.
Eventually our daughter had to go back to work in her new city, and so my main helper was gone! My husband kept encouraging me to try and use dictation so that I could remain active here, and on social media, but I spent so much time "correcting" it that I grew really upset and frustrated. I couldn't play video games on my Nintendo Switch or my computer, I couldn't sew, crochet, or do any of the crafts I usually do. No cooking or baking because I couldn't lift enough. Mostly I read some books on my iPad, watched a LOT of TikTok and Disney+, and watched my houseplants grow. Our daughter has been flying home every weekend to help me by doing laundry and cleaning house. My husband handles the cooking, shopping and getting me to/from rehab/PT. They both have been just so supportive, and I am beyond grateful that I have them to help me through all of this. I know how fortunate I am to have them.
For now, I have been released to "regular" activity, and I have been trying to get everything I have missed doing... done. I finally got to go visit our daughter's lovely garden apartment, and see where she works, and eat at all of her new favorite places in her new city. I also got to visit my first H-E-B! We were going to go to Buc-ees, but I was not emotionally prepared for how HUGE it was, and I chickened out!
I did get to go to my first-ever IKEA (I know it's not a big deal to most people, but I have wanted to go to one for *so* long!) I am still kind of shocked at how quickly I get exhausted by just doing ordinary stuff.
Along the way, our daughter bought me a new Whill C2 (white, so he is named BayMax, of course) and I am pleased with him. I couldn't use any of my "normal" mobility devices at home (like my rollator, my Zoomer chair Mirabel, or my TravelScoots Angus & Sven) because I couldn't put any pressure on my left hand at all, and I still am limited on how much pressure and how much bending I am supposed to do. Sadly, my Fold & Go was just too big; not only does it not fit in some places, but I can't turn it around inside the house for the most part. The Zoomer chair does work well in our home, but does not have arms that fold up for transfer, and I couldn't easily step out of it without needing to brace with my left hand, so that didn't work either. The TravelScoots also work well in our home, but by design it needs 2 hands. We liked the Whill C2 because it can be ordered in the size that was right for me, and we can adjust the back rest up and down, which I really appreciate. We also liked that the App allows you to park it across the room, and if needed it has the ability for attendant control. Probably the coolest thing is how it spins around AND can go up and down small steps and over thresholds. I'm having fun driving it, and while it is heavy, it does break down into 4 parts, so it can fit in the back of my Kia Soul. My family assures me that it is not a problem for them to assemble/disassemble, but I always worry about that. They do so much for me, I want things to be as easy as possible for them!
My chemo for my R/A has been changed as a result of surgery, and that has been kind of unhappy, and I have had a lot of unpleasant side effects with that as well. My inflammation numbers are through the roof (no surprise there) and my immune system has taken a hit too. My rheumy is continuing to change one thing at a time, so that we can monitor my numbers and make sure that we continue in the right direction. As I said before, I am a work in progress!
So, here I sit this morning, with a hole in my finger, a stable of largely useless mobility devices, but my own very BayMax, and happy memories of a magical trip where I woke up with the animals every dawn, and even got to frolic with dolphins at EPCOT. Hopefully, I am back for a good long while, and if I do have to leave again, hopefully this time there will be an opportunity to at least tell y'all what is going on!
I missed y'all!
°O° °o° °o° °o° °O° °o° °o° °o° °O°
I'm so sorry y'all. I did not intend to disappear like that, and - as always! there is a story to be told.
(For the new folks I haven't met yet... Hi! Howdy! Hello! Sorry I missed meeting you before, but I'm back like a bad dream, so... lucky you?
Nah, lucky *me* because I have new friends to meet! Yay!)Fair warning, this is going to be long, and there will be icky medical stuff (which explains why I haven't been here)
OK. Here we go.
°O° °o° °o° °o° °O° °o° °o° °o° °O°
We went to WDW in late Jan/early Feb of this year. We got pixie-dusted *so hard* at AKL that I am still in shock (Yeah... Savannah view when we had booked standard view; it was totally unexpected and so very delightful) and on top of that, our daughter surprised me with an experience I never thought I would do, at WDW or any anywhere: Dolphins. We got to go behind the scenes at EPCOT to watch the dolphins train, and then go up across the big tanks, and down to an area where the dolphins came right up to us, and we got to pet them, and the trainers showed us up close and personal how and why they trained them to do so many cool things (here's a hint: it's so it's easier to vet check them) and we got our pictures taken with them, and I wore a wet suit... OMG it was just pure magic. It was so overwhelming, and I am still just absolutely delighted every time I think about it. And yes, that experience *is* accessible, completely. (I hope to write a post about it one of these days; it really was just absolutely, deeply profound for me, and I still find it hard to be coherent when I try to talk about it)
The entire trip was a fantastic one; we really didn't have a single bad moment at all. It was just great memories, amazing meals, Adult Beverages ™ and lots and lots of laughter and relaxation. Probably the closest thing I have had as an adult to a "perfect" trip.
°O° °o° °o° °o° °O° °o° °o° °o° °O°
(trigger warning: the rest of this has icky medical stuff. sorry)
As always, we drove down & back; it takes 3 days/2 nights 1 way. On the way home, I noticed what appeared to be an arthritic nodule growing on my left forefinger (pointer finger). It was at the joint closest to the nail, and it grew very rapidly; so much so that by the time we got home 3 days later, I scheduled an emergency appointment with my rheumy to see what she thought, and if we needed to adjust medication.
She thought it was possibly related to gouty arthritis (hang out with me, learn new things LOL) and she added some medication to help control it. Except it continued to grow, and a few days later, I woke up and it had burst overnight.
There was a HOLE in my finger, right at the place where it was most swollen, over the joint, and boy-howdy it was not happy and neither was I. I called my rheumy, she looked at pictures I put up in the patient portal, and she said "Call your hand surgeon, stat". So, I called his nurse, and told her the pictures were in the portal, please ask him to take a quick peek. She looked at the pictures and said "We will work you in today; be here after lunch". Before 5:00 pm, we had surgery scheduled, and very specific instructions about how to keep it infection-free. He diagnosed it as a benign cyst; he said that usually they don't "blow open" like that, but he was going to literally pop it out *and* fix my carpal tunnel on the same hand and the surgery would be less than 7 minutes total. Hide and watch, he said. The earliest I could get on the calendar was 4 weeks out, but we were all comfortable with that. In the interim, I was learning to do everything with 1 hand again; luckily this time I had my dominant hand free, and it was mostly healed from it's surgery, so that was... great.
Literally in the middle of this part, our adult daughter had to move to another state for her job; when they got to her new place, she literally had the moving people just stack everything in her apartment, and she flew right back home because...
...the cyst continued to grow, and it continued to burst every other day or so. Less than 2 weeks later, they slid me into the surgical schedule for the next day.
What was supposed to be a 7 minute surgery wound up taking significantly longer. His initial plan to "pop" the cyst out (his words) was quickly scrapped when he realized that the cyst had actually grown well down into the finger, was wrapped through the joint and even up behind the nail. Instead of the little "X" incision that he had described to me and my family, he had to completely peel open the finger, and carefully remove the cyst, trying not to damage any more nerves, ligaments or soft tissue than had already been compromised.
Good news: he feels certain he got it all. (fingers crossed, no pun intended)
My poor family was so scared; the last surgery he did for me they literally got the text message that the surgery had started and less than 2 minutes later, got the notification that I was headed to Recovery. This time it took more than an hour, and they didn't know what to think because he had initially thought it would be less than 7 minutes. When I woke up in Recovery, I thought my nurse looked just like Stanley Tucci; he was funny, and swore up & down he was not in the movies. I don't remember much else about that, but when I got back to my family, I saw how bandaged up my hand was, and I knew then that things did not go to plan.
Basically, I lost most of February, and all of March, April & May to all of ...this. I have tried to stay positive, and for the most part I think I succeeded, but there were some pretty tough moments.
Anyway... I no longer have a cuticle on that finger, and some *very* interesting scars that run down my finger towards my hand, including a giant hole that has been slowly healing from the bottom up. It's still super tender where the nerves are trying to heal, and I have to change the orientation of the bandages every day so that the soft tissue comes back properly, and not all lumpy. The hole still gets butterfly bandages in the shape of an "X" to help keep the hole somewhat closed, and encourage it to heal properly as well. I still have weight and usage limitations also. I am a work in progress.
Our daughter was able to shift her report date by nearly a month, so her apartment sat full of her stuff, while she stayed with us at home and helped care for me. Because of some of my autoimmune stuff, my wounds don't always heal like normal; I tend to create LOTS of scar tissue, and any cut or scrape that is over an "active" area of skin will continue to expand, even with stitches (stitches can make it worse, as we learned with my other hand surgery)
I required a *lot* of help, and had a lot of rules surrounding the use and care of my left hand as it heals, and was cautioned that another surgery might be needed since the cyst grew so fast and was so deeply established. The hand surgeon genuinely believes he got the entire cyst, but we will be doing some imaging later this summer to comfirm that, once more of the soft tissue is properly established.
Eventually our daughter had to go back to work in her new city, and so my main helper was gone! My husband kept encouraging me to try and use dictation so that I could remain active here, and on social media, but I spent so much time "correcting" it that I grew really upset and frustrated. I couldn't play video games on my Nintendo Switch or my computer, I couldn't sew, crochet, or do any of the crafts I usually do. No cooking or baking because I couldn't lift enough. Mostly I read some books on my iPad, watched a LOT of TikTok and Disney+, and watched my houseplants grow. Our daughter has been flying home every weekend to help me by doing laundry and cleaning house. My husband handles the cooking, shopping and getting me to/from rehab/PT. They both have been just so supportive, and I am beyond grateful that I have them to help me through all of this. I know how fortunate I am to have them.
For now, I have been released to "regular" activity, and I have been trying to get everything I have missed doing... done. I finally got to go visit our daughter's lovely garden apartment, and see where she works, and eat at all of her new favorite places in her new city. I also got to visit my first H-E-B! We were going to go to Buc-ees, but I was not emotionally prepared for how HUGE it was, and I chickened out!
I did get to go to my first-ever IKEA (I know it's not a big deal to most people, but I have wanted to go to one for *so* long!) I am still kind of shocked at how quickly I get exhausted by just doing ordinary stuff.Along the way, our daughter bought me a new Whill C2 (white, so he is named BayMax, of course) and I am pleased with him. I couldn't use any of my "normal" mobility devices at home (like my rollator, my Zoomer chair Mirabel, or my TravelScoots Angus & Sven) because I couldn't put any pressure on my left hand at all, and I still am limited on how much pressure and how much bending I am supposed to do. Sadly, my Fold & Go was just too big; not only does it not fit in some places, but I can't turn it around inside the house for the most part. The Zoomer chair does work well in our home, but does not have arms that fold up for transfer, and I couldn't easily step out of it without needing to brace with my left hand, so that didn't work either. The TravelScoots also work well in our home, but by design it needs 2 hands. We liked the Whill C2 because it can be ordered in the size that was right for me, and we can adjust the back rest up and down, which I really appreciate. We also liked that the App allows you to park it across the room, and if needed it has the ability for attendant control. Probably the coolest thing is how it spins around AND can go up and down small steps and over thresholds. I'm having fun driving it, and while it is heavy, it does break down into 4 parts, so it can fit in the back of my Kia Soul. My family assures me that it is not a problem for them to assemble/disassemble, but I always worry about that. They do so much for me, I want things to be as easy as possible for them!
My chemo for my R/A has been changed as a result of surgery, and that has been kind of unhappy, and I have had a lot of unpleasant side effects with that as well. My inflammation numbers are through the roof (no surprise there) and my immune system has taken a hit too. My rheumy is continuing to change one thing at a time, so that we can monitor my numbers and make sure that we continue in the right direction. As I said before, I am a work in progress!
So, here I sit this morning, with a hole in my finger, a stable of largely useless mobility devices, but my own very BayMax, and happy memories of a magical trip where I woke up with the animals every dawn, and even got to frolic with dolphins at EPCOT. Hopefully, I am back for a good long while, and if I do have to leave again, hopefully this time there will be an opportunity to at least tell y'all what is going on!
I missed y'all!
°O° °o° °o° °o° °O° °o° °o° °o° °O°
