Do I Have Phantom Pain? * 8 Finger Amputations * Raynaud's * Scleroderma * Awareness * Education

[00:00:01]Hey friends, welcome back to Llama Mama Kayla's Craft Desk. I'm Kayla. Thanks for joining me. I tell you what, I haven't been at my desk in so long, I forgot how hard it was to get my phone out of my phone case and into the camera stand. I forgot how hard that was and it was just a little bit of a reality check just then. But I'm really wanting to get at my desk and do something. And so I think I'mma try cutting since I do that with my left hand. And um I'mma try to hold paper with my little pincher over here and just see how that works for me.

[00:00:45]And so I thought we would chat about a question um a comment that I get often.

[00:00:52]I see this comment well every now and then I guess. I mean, it's not like I get bombarded with this question, but every now and then I see this question and I guess I don't talk about this too much. I know I have some in the past, but um I thought, well, let me just address that. And the one reason why I am discussing some medical issues and things like that here lately is because, okay, one, I haven't been able to get in here and craft while I've been so sick dealing with, you know, all the things I've been dealing with. I haven't been able to get in here and craft. Okay, that's one reason.

[00:01:30]And the other reason is when I was diagnosed with certain things or um and needed to find more information, there's just not a lot of information like from real people talking out there.

[00:01:51]And so if someone else is like in my position and needing to know more about, you know, feeding tubes or gastroparesis or reods or any of those things, if they can stumble upon my video, it might help them. And so, um, that's why I'm doing some of these videos. It is called education and awareness. And I know some people don't like medical type videos and you know I'm sorry but that's what I can do right now. I I can't just get in here and obviously crochet at the moment. I can't get in here and just like create and do a lot of crafts with you know being sick and just having surgery on that finger and you know all these kind of things.

[00:02:43]So, and then um you know there are some people who just downright ugly and hateful. And so there was a lady who you know um stated her feelings and you know I just really felt sorry for her and her loved ones. I hope no one ever in her family ever becomes sick and has to depend on her. Oh my gosh, that would just be so horrible.

[00:03:17]Oh yeah, she was quite ugly about my medical issues and um things. So, you know, I just hope no one in her family ever becomes sick and has to depend on her.

[00:03:34]Oh, cuz she does not have any compassion whatsoever.

[00:03:40]But anyway, today I am going to be talking about reods and finger amputations and phantom pain. So, a lot of times I do get asked about phantom pain and so I guess that's something I don't talk about too much but I know I have spoke about it in the past cuz I do remember videos about it and um comments you know about from that video.

[00:04:11]So let's just talk about do I get phantom pain? Yes, I do. I have since day one in 2013. this finger was amputated and I have reods and scaroderma together and I think because I have both of those conditions together it makes my reods worse and my reods is what they consider medical resistant medication resistant and so In my time with the Rainods, my doctors have tried just all kinds of things.

[00:04:56]Just everything you can think of.

[00:04:58]They've called other places around the United States and spoke to other doctors asking for suggestions and their suggestions are things that we've already tried.

[00:05:13]And so we've already tried those things.

[00:05:18]um the medications and treatments and deals like that. I mean I' I've done all kinds of things or I say I my doctors and I have tried lots and lots of things. Anyway, so I have had eight fingers amputated, nine surgeries because I've had surgery on the thumb twice.

[00:05:43]And so back in 2013, I had that first finger amputated.

[00:05:47]I was not prepared for that phantom pain. I really was not.

[00:05:53]Before I had that finger amputated, I went a good while with that finger and just trying different medications and um things. Well, that was mainly on the second finger where we tried so much on it. The first finger was a little bit too far gone, but I had went a long time with it just in a lot of pain.

[00:06:19]And so once that finger was amputated and I went home, I still felt the pain of that finger.

[00:06:28]When you have nerves dying in your body, like the nerves are actively dying, that is just the most painful thing cuz those nerves just go crazy. And it was very, very painful.

[00:06:45]And so after the finger was cut off and gone, I still felt that pain.

[00:06:52]I still felt that pain. and it would wake me up in the middle of the night and before I had the finger amputation, I would grab the flashlight and look at my finger to see if it had busted or exploded or whatever. And I found myself doing that even after the amputation just cuz the pain was still there and it was just so real. Now, it didn't like just hurt hurt all the time. It would come and go, but it was um very surprising to me. And I'm not talking about it was hurting down here. I'm talking it was hurting out here. And you can tell where your finger is hurting.

[00:07:35]Okay, let me say this.

[00:07:37]I Can you see that? I can still move my fingers and over here too.

[00:07:46]I could still move those fingers. Like I feel like I could take those fingers and reach down and grab these scissors.

[00:07:56]I because my fingers feel like they're still there.

[00:08:00]That is like crazy to say that and probably crazy for you to hear that and it's crazy to try to explain that. But I really I feel those fingers. I can move them. I can stand the finger up in the air like this or I can bend those fingers down and that's wacky, right?

[00:08:25]And so feeling the pain in those fingers and you you know you can the pain's not down here. The pain is here in this part of the finger except that finger is not there.

[00:08:43]Okay. So, as if that isn't crazy enough, let me just tell you this. Sometimes I feel like there's something under a fingernail of a finger that's not even there.

[00:09:00]And it drives me crazy. You ever like get a little something under your fingernail and it's, you know, you just got to get it out because it doesn't belong there. you know, it's a foreign object under your fingernail and it hurts. Not not so much as hurt hurt, but it's uncomfortable and you just it doesn't belong there and you got to get it out, you know.

[00:09:22]Um, say if you was to, I don't know, reach down into a bag or something and pick up change in the bottom of it and there's also some grit, dirt or sand or something in the bottom of that ba bag and some of it went under your fingernail and it's there. Uh, you're going to want to get that out because it doesn't feel good, right?

[00:09:47]So sometimes I have something like say this finger or this finger here. There's something under the fingernail.

[00:09:55]It is annoying as I'll get out. But what I do is I will get some and I'll clean under this fingernail and clean under that fingernail and in hopes that it makes that fingernail feel better.

[00:10:14]Oh, it is crazy. It is crazy. But and then I'll just do my fingers like, you know, back and forth and close my hand to a fist. Open my hand up. And when I open my hand up there, I do my fingers out like pulling them out up towards this light up here. I'm pointing the fingers up there. And then I point my fingers down towards my desk. And I'll just do things like that. And maybe I'll go wash my hands.

[00:10:48]I just do anything to try to get that feeling to go away. And eventually it does. It's not there for like a long long period of time, but it's there long enough to be annoying.

[00:11:02]And that is a wacky feeling when you have something under a fingernail that's not even there. And then sometimes, you know, like my fingers just these fingers out here or these over here, they will just hurt. And so I just kind of massage my hand, you know, I'll do that. Kind of massage my hands and in hopes to make those fingers feel better. And like I said, it doesn't last like a long long time. It's not like um you know it's lasting for hours upon hours. It's just short periods of times, but it's a it's a good little minute of pain or uncomfortableness, you know.

[00:11:54]And it is just really weird to have fingers that are not there to be hurting.

[00:12:06]So when I get phantom pain, I do not take any pain medicine for it or anything like that. I just hold off and just, you know, like rub the fingers or wash my hands or just do whatever to try to, you know, get the get it to just settle down. And it will eventually, like I said, it's not like it's hurting for major pain hours upon hours. It's just a discomfort.

[00:12:33]And more than that, it's a nuisance.

[00:12:38]It's a nuisance more than that. But anyway, some people might have phantom pain that's, you know, way more severe.

[00:12:45]I can't discuss that because I don't experience that. So, I know for some people with like maybe they've had an amputated leg or something and they might be in severe pain with phantom pain or something. Like I said, I I really don't know to to comment on that, but um for me, it's it's a you know, an uncomfortable, annoying pain for just a short period of time and then it goes away.

[00:13:24]But yeah, I've gotten that question a lot here lately and I thought, well, let me just do a video on that and you know, explain that I do get phenom pain. It's just not um it just doesn't last like a whole long time or a very long time I should say. I don't know why that word come out. This is the first time I've used this pincher to hold paper and try to cut. And I thought it's time. I got the stitches out that's healed up really well.

[00:13:59]So, I thought it's time to try to do something because I just been itching to get back in here at my desk. I'm just not the type of person that can just sit around and do, you know, nothing. I want to be doing something, being creative.

[00:14:18]And so I just thought, let me I'm just going to my desk. I got to do this.

[00:14:26]And so why it's a little uncomfortable to use that pincher. Um cuz I'm having to hold that kind of tight, you know, and it's the first time I've held anything tight like this. So, um, yeah, it's it's different.

[00:14:44]Something I'm going have to get used to for sure. Occupational therapy come out today. Yesterday, physical therapy come out. I told you about that already, I do believe. And then occupational therapy come out today. And so, um, we talked and she said after we talked about everything under the sun, um, she was really nice and I really do like her. I've liked all the ladies who've come. There's not been one of them that, you know, I didn't care for. They all been so very nice.

[00:15:21]But, um, she did decide that, let me get the she said, "Go ahead and get the physical therapy right now." And then she'll when that's over with, then she'll pick up and come do the occupational therapy, working my arms.

[00:15:36]She works with working the arms, getting your strength in your arms. The physical therapy works with getting the strength in your legs.

[00:15:46]And you know, I told her and and the other one too. I've told both of them, you know, that I had been already working on some strength in my legs before before this episode happened and I got real sick. Um because I want to get my strength up because I got a grandbaby coming and I'm going to have to be making some trips to Arkansas and I want to be able to, you know, make that trip and go see that grandbaby when he's born and all that. So anyway, um so they both know my goal is to get my strength up.

[00:16:35]So anyway, um she said, "Okay, I can move this arm and I can raise it above my head and all that, but this one over here, moving it too much, like if trying to raise it above my head, it pulls my skin on my abdomen around my sto." And y'all know that's really angry and upset right now. And so when I pull this arm up, if I was to raise it above my head, it would stretch that sto and just start hurting really bad and so bad enough that I would need pain medicine.

[00:17:14]And so I I told her I can move this one really good and this one is limited on the movements of it right now. I said, but when that sto heals up, it'll be okay to move it. And so she decided, let's let that sto help a little more while I'm getting the physical therapy.

[00:17:36]And then when that's done, she'll swoop in and continue my therapy, but with the occupational therapy, getting some strength in my arms. And she did leave me a big rubber stretchy rubber band type thing um to go ahead and work on this arm.

[00:17:57]I can put this rubber band around my hand and then the other part of it's on the floor that I can step on. Even when I'm sitting in my chair, I can put my foot on the other end of that. And then um I can raise this arm up like that and I can adjust the um the resistance in the rubber band and all. And so I did that a little bit while she was here just to make sure that, you know, I knew how to do it correctly. I was just, you know, like, is this the way I'm supposed to do it?

[00:18:33]You know, and she's like, yes, yes, yes.

[00:18:34]You know, I told her, I said, um, that I'll I'll still work on this arm because, you know, my physical therapy lady will come and show me, you know, whatever things to do or such. And then on days she don't come cuz I'm thinking she's either going to come once or twice a week maybe. I'm not quite sure how many times a week she'll be coming. I'll find that out this next week as she starts.

[00:19:01]But even on days she don't come. I'll have my time where I have scheduled myself to do physical therapy. You know, I'll do whatever she shows me. I'll be doing that when she's not here. So, yeah, I am excited about that. And so, when I do the physical therapy part, I'll probably just go ahead and work this arm, too.

[00:19:34]But yeah, so that's what's going on with the physical therapy and OT. I'm so glad that insurance came through with that.

[00:19:43]Um, now insurance has not came through with the wound care, but we're just treating it, you know, and keeping it clean, dry, and changing the bandage out around it. And that's wound care. It's just um you know doing the best we can but you know we don't have any kind of doctor's orders for wound care but um Paige is doing a great job. She really is. She's keeping it, you know, clean and dry and putting the stuff on it.

[00:20:26]Um, we put some antifungal powder on it and we put some zinc oxide and we also have some barrier spray and then we have the um, oh, what do you call those pads? The absorbent.

[00:20:48]This this hand gets a cramp in it real quick.

[00:20:52]um putting those absorbent the 4x4 split gauze and then the aquael is that what it's called? I don't know. Some kind of very absorbent bandage around it. Yeah, this this is getting a cramp in it right through here. But, you know, maybe I just need to build that up as I do this more.

[00:21:17]But I wanted to, you know, I wanted to come in here and do something and answer the question about the um phantom pain.

[00:21:31]I tell you what, when I when I first had my first finger amputation, nobody talked to me about phantom pain.

[00:21:38]Nobody said anything about it. And I was a little freaked out when your finger's not there and it's still hurt.

[00:21:47]That was a little bit freaky. It was.

[00:21:51]So, I was not expecting that. Nobody had said anything to me about it.

[00:21:57]And then when I did, um, somebody was like, "Oh, you can set up mirrors and trick your mind and all that." But by the time I would set up the mirrors and go through all that trouble of doing that, the pain would be gone. So, that would be a waste of time. It's not like it's a major pain that I can't stand and have to live with. Some people might have that, but I don't experience that.

[00:22:23]You know, I could only speak on my experience, not someone else's.

[00:22:30]And I realize that phantom pain can be very painful for some people. I just hadn't experienced that. Mine's, you know, I guess mild and doesn't last like a really long time.

[00:22:45]I know.

[00:22:47]I know. Um, my cutting seems to be really slow, but as that builds up some strength in that and I'm able to cuz I'm having to, you know, like hold that paper tight and I guess it's just going to have to build up that muscle and muscle memory and all that kind of stuff. You know, the body, the human body is so fascinating when you stop and think about it.

[00:23:19]It is.

[00:23:22]The fact that I'm able to sit here and try to cut something out after I've had all these finger amputations is fascinating.

[00:23:45]But I appreciate you all so very much for stopping by and hanging out with me today. I'm I am um glad that I have this opportunity to leave some videos out there that can be educational and bring awareness to certain um diseases or complications and just things that you know I have experienced cuz like I said whenever I am diagnosed with something um and I've looked for someone else, you know, or more information about it or I haven't been lucky enough to find that information. So, it's just not a lot out there. So, that's why I do videos explaining different things like reols or gastroparesis and feeding tubes and all that kind of stuff. So, if that video helps somebody, I am thrilled cuz I know what it's like to be, you know, want to know how does this affect a real person, not just, you know, what my doctor said or what I can read on um whatever web MD or whatever that's called, you know, um how does it affect a real human person and you just want to see somebody, you know, and hear their experience.

[00:25:22]So I am thankful that I do have this platform to do that for someone who might be searching.

[00:25:33]But yeah, I thank you all for coming along and watching and just understanding that you know I am not not the same me anymore. or I am having to find new ways to do things. Find the new me. What am I capable of doing?

[00:25:53]And um you know what what's my new life going to look like? Every time I've had a finger amputation, I always have to find the new me, discover the new me. And um it get it's hard sometimes. It is. I'm not I'm not acting like this is, you know, easy.

[00:26:16]It's not.

[00:26:18]But I don't have a choice except find the new me and figure out how I'm going to do stuff and, you know, get on with my life.

[00:26:30]Can't sit around and just um waller in pity.

[00:26:36]And some people do see talking about your illnesses as wallering in pity. I don't see it that way at all. My goal is to help other people and to bring awareness and just share my experience so other people can understand how this might be helping a I mean might be affecting a loved one of theirs. say you're um you have someone in your family that's going through something that I went through and you come across my channel and you see the video, it helps I hope that it helps you or whoever understand how their loved one feels.

[00:27:28]you know how they might be struggling and trying to deal with things.

[00:27:38]Not that we all deal with things the same way or, you know, we all have the same exact feelings or pains or something like that, but I'm sure it can help someone understand the um different things. And so if um if you know that I have experienced or went through something and you would like me to make a video on that topic um such as you know gastroparesis, lupus, reo, sodins, um amputations, scleroderma, feeding tube. I mean, gosh, I've been so through so so much. The port, the pain pump, Medronic pain pump.

[00:28:26]If there's any of those things or just whatever that you would like for me to make a video on, please leave me a comment about it and I will try my best to do that. You know, um, typing and stuff like that is doesn't come easy for me. it's harder harder for me to do that and it's much easier if I just do a video and so I can do that and then in the the other benefit of doing that is somebody else might stumble across that video and it helped them in their life you know so yeah guys thank you for watching and I will be back with another video. I hope you're all going to have a great weekend. It is Friday evening at the time that I'm recording this. So, tell me about your plans for the weekend. What you got going on?

[00:29:28]Bye, friends.