The Emotional Reality of Rheumatoid Arthritis & Recovering from 3 surgeries at 45 years old

Ali: Hello guys, welcome back. I stand here with in front of you as a woman, a mother of two teenage daughters. I had two hand surgeries, one at 42, the other at 43, and I had a total right knee replacement at 45. I'm putting off the second one. I'm actually not even putting it off. I need to get it done, and I will get it done as soon as the stars align and it it can happen. So this episode is less about the actual surgeries, although I will talk a little bit about them. and more about the psychology and the emotions and the growth and the depression that went around just being 45 and needing a total knee replacement, or having two hands, not having a hand for the better half of a year, my dominant right hand for the better half of the half of the year, and what that did to me emotionally, spiritually, physically, motherly, all of it. So let's dig in. so how did I why did I need two surgeries? I I guess we should start there for my hand. there was a time, and I will do another episode on my journey with holistic healing. And I've briefly mentioned it here and there, but there was a time when I was doing only holistic treatments. And I I've said it before, I probably did it two years too long. I probably did I think I went this about five years, maybe four. Four or five years, four and a half, five years, somewhere in there where I was not taking any medications. Don't be like me. I don't regret it, but I do regret it. So what do I mean by that? So I needed to do that. I needed to I needed to go through those those steps. I needed to do all the research. I needed to see if I could heal myself. I needed to like walk through that season of life. And I wasn't gonna truly accept this disease or the treatments that I would take for the rest of my life unless I did that, I think. I just I really I and I I hear this from a lot of people, especially when you have rheumatoid because it kicks in like a hellfire. It's you know, you might start slowly with a little bit of like what the what the heck is that? But then like when you're in a full blown flare, I went from running a marathon in April. And then the next April, I could not walk up my sister's driveway to Easter dinner, Easter brunch. So that's a true story. I literally ran a marathon in April. And then one year later, I it took me 10 minutes to get up her driveway. It was not good. I was, I couldn't stand up straight. I was like a hunched back over. Like it was just not good. so I I initially did start with medications. but then I started doing some research. As I'm sure everybody has to why did this happen to me? How did this happen to me? Is can I heal myself with food? Can I heal myself with acupuncture and chiropractic care and supplements and all that stuff? So all that to say, I I did that for way too long. I I was literally too stubborn to just be like, Allie. You're you're s you're you you need help. That I just could not wrap my brain around I can't fix myself. I don't and I and I sat in that too way too long. So I had a lot of pain in my hands at this time. My kids were babies. They weren't kindergarten and preschool. We're talking like four, five, four and five, maybe even three and four, and during these years. And my hands hurt so badly. I really could not brush my daughter's hairs. Hair. And their hair now is curly and gorgeous. And you would think, well, yeah, that that makes sense. But when they were young, their hair was straight and easy to manage. And there were many days where I could not brush their hair. I couldn't brush their teeth. I could I had to give them foods that I didn't have to cut because I couldn't use a hand. Like I I my hands were in so much pain. I was not in a good place at all. We spent a lot of time at home. and they had each other and that was great. And I did the things that I could do with them, but that's that's not really the point of this. The point of this is why I needed those two surgeries. So I had so much pain in my right hand. And it was like in and here. And so like it to me it was like, God, why does why does this part of my palm hurt so bad? it just felt more muscular. I just didn't think that like I I just didn't think. So I was going to acupuncture and she was doing all kinds of treatments there and I was taking every supplement, spending a fortune doing everything. And eventually my hand got so bad and the pain was like, you can't if you're listening to this, it was the palm of my hand really. And my my my joints of the knuckles and stuff were inflamed too, but I just had this intense pain around my the pad of my thumb and like up well it's really just like the pad of my my hand and specifically my thumb. and then on one day I don't remember this. I don't there was never like a moment when I was had excruciating pain. It was just a lot of pain all the time in my right hand, which is my dominant hand. And then all of a sudden my pinky wouldn't move. It was stuck like I can't I can barely it was stuck like this. I can't do it now. so yeah, it was stuck like this. So I think I think I ignored that pinky being stuck. And that happened when my kids were l really little. So probably five years. I I probably ignored that. But I would poke myself in the eye, put my be doing my hair and try to put it up. And I would poke myself in the eye because I couldn't bend my it bends now, but I could not bend it at all. It was just stuck there. And it's similar to my thumb now. I have some range of motion in my thumb, but I can't give a thumbs up because I I have a ligament damage in there too. But anyway, what had happened eventually now I moved to South Carolina. I get a new doctor. She's like, Yeah, that's that's not really normal. Let's I'm gonna send you to orthopedic. So I went and I basically had torn the ligaments in my hands. Now that's pretty a pretty painful thing that that's that usually I said to the doctor, I'm like, God, I don't remember like ever having any sort of trauma that would have done that. And he's like that this is very Tearing ligaments is very painful and you should have felt that. But I what I think, and what we came to realize is that it was really just a slow degradation of the ligament because of all the inf the inflammation over time just kind of wore it, wore it, wore it, and I had all that pain. and then it just broke. So had I gone to a doctor or a surgeon at the time of which my pinky had stopped working, they may have been able to. Maybe not because It wasn't like it was a super healthy tendon, I don't think. but like if you were just to go rupture a tendon, they can usually sew it back and you have to like keep it straight or whatever. And you know, they can basically stretch it and and suture it and fix it, and then you know, you you rehab or whatever. But because I had let it go so long, there was no ligament left. It it so there was no way for them to like just stretch it and reattach it. So They basically took a ligament from my arm, so I have a scar here, and had to put it this. So I have this scar starts at my wrist. The it starts at like really the bottom of my forearm, the back of my arm, but like below my wrist, it goes all the way up to the pinky, all the way up top here. It stops at the first at the last knuckle on my pinky. So I you can't really see it here, but I look like It's that Halloween character with all the stitches on her. I forget. I forget. Anyways, so that was the first surgery. Was they were took a ligament for my arm. Thankfully, not everyone has an extra ligament there, but I did. So they took that and they put it here. And then that was the first surgery. I had to keep while the ligament is healing, you don't move it. It stays like in a cast. I had this big cast thing on, and then I did eventually get to wear a smaller one, but It has to stay in the spot so the ligaments can heal. Fine. That's was terrible because I'm a right-handed person and now I'm trying to put my makeup on with my left hand, do my hair, do my kids' hair, everything. You know, it was like not having your dominant hand for I think it was 12 weeks. I had to like I think. Yeah, but you know, it was a good time. And then you start rehab. And then they try to get this these the ligament to the finger to move again. The problem was that. That finger had not moved in five years. So there was no muscle. So when I tell you, they started with me p bending my pinky like that was that was huge. Like just a t like the tiniest little vibration of a pinky movement of my own finger was huge. Like the girl that my I loved her. She my physical therapist, she was amazing. And we we had the most ridiculous parties just over the tiniest little bit of movement. Tiniest little bit. So basically the first surgery, I had to have it done again because there was so much scar tissue that builds up when you're just keeping it super straight that I couldn't break through the scar tissue. So then we had to go back in and remove the scar tissue and you start moving it. Now your ligament is healed and you start moving that right away. So but I probably was another months, I mean months and months before I actually was full range of motion bending it. And I haven't done my exercises in a while, which is why it's not perfectly straight. Again, this was years ago. So this was five, four, five, five, five years ago. so let's talk a little bit about you know the mental gymnastics I had to do around I cannot believe that I ignore I lived through so much pain that it ate through a ligament and it wrecked my finger to the point where I couldn't move it. And also the same thing happened with this thumb. Not not all of the ligament has gone and I can go in and fix this and try to get it so that I can get more range of emotion. But it's surgeries are a lot and I'm you know my surgeon was basically like you have to do the pinky We can't do them both at the same time. You can't rehab those two things at the same time. So we can't do them together. And he's like, it's such a small range of motion that you don't have. I don't know that I would recommend it. if it's gets worse or if you get no range of motion, then we can talk. But so I've opted a against that. But let's like like I was saying, let's talk about the mental gymnastics of what I actually put myself through trying to prove. That I actu like I think I was just trying to prove that I didn't have RA or that like I don't know, I Jesus and I can heal myself. It's like wild, wild, wild, wild what I was doing to myself. there was no talking me out of it. No one did try to talk me out of it, but I I I I was pretty firm in the I'm going the holistic route. And then come to find out, I basically let my body deteriorate to the point where, you know, my hands weren't working anymore. So I had to come to terms with that. Because literally the RA, yes, it is the reason that the ligaments tore, like all that inflammation. But I'm really the reason that the ligaments tore because I did not listen. I did I just, you know, I just stopped taking medical, you know, taking my treatments. And that's not a good thing, which I've come to learn. I think it's a good thing to do all of the things, but eliminating treatments. more Western medicine treatments is not the best idea for me. If you can do it, God love you. But it destroyed my body. So that was the two surgeries I had. they were pretty back to back. I did them both in a year, but I had a birthday in between. So within one year I had those two surgeries. I will say I didn't want to have surgery. Because my mother had to come and help. I live I think I've mentioned, if you're new here, I relocated to Charleston, South Carolina seven years ago, mainly because the winters were killing me in Boston and I wanted a better quality of life for myself and for my kids. And my husband, he needed to change at the same time too. So it was kind of all divine it was like divine intervention, the way that it all happened. But when I got here, my doctor said was like, This is not normal. My other doctor didn't really I mean, I really didn't go to her that much. And I had switched and we we talked about my finger a little bit, but she didn't send me an orthopedic. so or maybe she did and I just didn't follow up with it. I don't remember. but the mental gymnastics that I had to go through about okay, I need this surgery, it's gonna be life-changing. I I used to say, I can just I don't need to bend my finger, it's fine. I mean, yeah, I poke myself in the eyes, but I would burn myself like. You'd stick your hand in the toaster or something, you know, like the toaster oven. I would stick my hand in the toaster oven to pull out a piece of toast and my finger would not bend, so I would burn it and it would cinch. You know, stupid even washing the countertop by accident, I would brush up against the stove that was on and it would burn my finger because I cr I was bending every the other finger, but this one is sticking out there like a weirdo. So things I never thought about. And I just adapted to. And now that I don't do that and and I have movement of my hand, it's as wild. Like, what what was I thinking? So recoveries from those surgeries, they weren't terrible. They weren't great. I mean, I spent a lot of time on the couch. I find that anesthesia really does is not my friend. It makes me a little depressed. I'm not gonna lie. So I didn't realize that until the third surgery, but So I just spend a lot of time recovering. you don't take medications leading up to these surgeries because they suppress your immune system and you don't want to get any sort of infection. So you don't want to suppress the immune system. so a lot of that there was like it's not just the surgery, it's the downtime, the recovery, the constant back and forth with these particular surgeries that I had on my hands. I the second surgery, I had to have physical therapy seven days a week for like two months. Seven on Sunday I was we were opening the office. The this woman was my savior, my like angel, God sent me an angel to help me, my physical therapist. And she happened to live in the same town as I did. So sh there was a small little satellite office and on the weekends we would go over there and she would help me. But otherwise I was driving a good forty five minutes out to physical therapy seven days a five days a week. Days I could do it here. I went to the best hand surgeon I could find in my plan coverage because it was not a it was a more complicated case, they weren't even sure if was gonna work. So yeah, I had to do a lot of forgiving of myself. Forgive myself for being in this position, especially when I was in recovery from the second surgery. I'm like, I cannot believe I just had two surgeries this year, and it's pretty much because I was stubborn. If I'm boiling it down, I'm stubborn. I let my body eat my ligaments. I'll never forget the surgeon. He's What do you mean you didn't you don't remember feeling it snap? That's not normal. That's it's extremely painful. I said, Well, I don't know. I mean, I think it just slowly ate away for quite some time. the knee. So I if I'm being honest, the knee was harder. As hard as the hand was, not having a hand, not being able to do things that I would normally do. at least I could still drive once I was off the pain meds. I could still drive. you know, I could still do everyday activities, but I had my t right knee completely replaced at 45. And honestly, I probably could have done it at like 43, but my doctor at the time was like, we want to, we want to kick this can, my rheumatologist, we want to kick this can down the road as long as we can. You're so young. so let's see how long we can go. And I do need the other one replaced, but I had decided that I needed to get it done because it wasn't the pain. I mean, as I said, I I can live with pain, as most of us with rheumatoid arthritis can do. We are in it all the time. So we become a little bit numb and immune to it. so the d the day-to-day pain was nothing compared to. even like I don't know, not compared to my other knee. The other knee I have more day-to-day pain. But the reason that I got my knee done, my right knee, was because when I was driving and I was pivoting my knee from gas, my pivoting, you know, my foot from gas to break, it would often get stuck. right where it was bone on bone, the bone would get stuck. And it was excruciating pain to get it unstuck. And it didn't just unstick. So I would be driving and they're trying to hit the brake and my foot was stuck. It was it was a safety concern. I was taking my kids at the time to schools and the you know, whatever, sports and all this stuff and picking friends up. And I'm like, This is this is actually a hazard, and I have to get this addressed. I'm just noticing now this pattern of me waiting until the absolute last minute. But part of it is because you, you know, you want to wait till you've met your deductible because these are not inexpensive surgeries. I mean, you have to pay whatever you owe before you go. That's that's what I had to do for my hand, if eight thousand dollars a day before my surgery, because I hadn't met my deductible. But for whatever reason, I had met my deductible, they had an opening. It was a matter of like a month and a half. And it was because somebody canceled because this guy books out for eight months at a time. He's the he does more knees and hips than anyone else in Charleston. And actually I just heard that he is possibly retiring in September, which is not great because I gotta do my other knee. but I that's why I did that. And I guess I was a little naive. My husband, they send you videos of what the surgery Surgeon does and what the surgery entails, and I did not watch them. my husband did, and he's like, Do you know what's gonna happen? I'm like, Nope, don't nope, don't care. I just know that I I needed a new knee and I was gonna do it. So actually, when I went to the my rheumatologist kept saying, kick it down the can, kick it down the can. But when I went to an actual knee specialist, orthopedic knee specialist surgeon, he said, We used to tell people your age. to try to wait another ten years if you can. but the technology has advanced so much, they used to only last twenty years. So if you do it at forty five and they last twenty years, now you gotta get it done at six at sixty five again. And it used to be the second knee the success rate or the I guess success rate of a second knee replacement is not as high. There it fails a lot, a lot of infection or something. I'm not really sure. That's what they used to do, but my doctor told me that it's not the case anymore, that the materials they use are better, they last longer. I should get at least 30 years out of it and some, you know, hopefully know technology in 30 years has changed even dramatically more and so maybe it won't be as bad but we shall see with that. my mother had to come. She came originally for a month because it was my right knee I could not drive. and that was brutal. the The pain is is pretty intense. I'm not gonna lie. My my whole leg was from my ankle to my hip was about as black as my chair. It was not everyone has that kind of bruising, but I definitely did. I healed quickly. my my scar is beautiful, like it it doesn't look as bad as a lot of other people I know that have had that. the recovery from that surgery was a lot. I wasn't prepared for it. If I were to do it again, I'd definitely get a recliner chair because getting in and out of bed was torture the first week. you have to wake up every couple hours and take medications because once if you get behind it, it's terrible. The pain is so bad. and I swore on my life I would never do my other knee over and over and over again for the first probably three weeks. You know, I I was like, this is not worth it. This is awful. I was in so much pain. And like my back hurt because I'm sitting in bed all day long. Or like, you know, and I I was so good about the physical therapy. I was I was the first surgery in the morning. I was home by five o'clock at night. I had walked in the hospital before they left. I was I had my nurse show up the next morning and my mother's a nurse. So I I did my exercises religiously. I never skipped. I walked when I was supposed to walk. I did every single I was like the picture perfect patient because I had been through hand surgery before and I was scared about having another one. I did not want that. I was just so I did everything that I could do to follow the doctor's orders. And there was a lot of people like once you have in home at least I did, in home therapy, physical therapy for maybe the first month. And then once you're able to get out of the house more, I went to a physical therapy place. And I did that for two months. So I had my surgery September September 25th. And by Thanksgiving, I was completely done with therapy and everything else. Like my knee was great. That is a very short amount of time for a knee rehab. Now most people that I was in there with were 30 years older than me. And they their recoveries were much, much, much, much longer. but also because I was an athlete, they The th the physical therapist in there told me that they love working with athletes because they respond better, their muscles respond better. Even though I haven't really done much in the last decade because of obvious reasons, I build muscle quickly and they that's part genetics, but also partly my your body doesn't forget. They should they one of the students there was telling me that he read this story about. no, it wasn't a story. He worked with a professional athlete who was in his 80s, and the guy was like his muscle tone was crazy, and he hadn't worked out in like 40 years because it's just different culture back then. And you know, they say they kept saying it over and over. And someone else said that they did, like in medical school, an autopsy on a professional athlete, and their muscles were still, even though they hadn't worked out. Like you can just tell the difference of these people who work out at high intensity. So that was part of the reason I think that my recovery went so well. And I was able to rehab as as quickly as I did. And I was also, I came at it very much as an athlete st standpoint. Like I'm I'm I set an alarm and I did my exercises multiple times a day and I never missed, no matter how much pain I was in. And I got full range of motion back quickly. So that was the good thing. I was able to use the psychology of my past life to help me recover from that. But I did swear on my life I would never do it again. And now I can't wait to do the other one. It is life changing and life giving. I just did not realize like I I I said I did it just because my c like I could I was starting to my knee was getting stuck. But now that I have a real functioning knee for like the first time, probably in 25 years, because I was an athlete, I always had knee problems. They were always bothering me one way or the other. So this knee does not hurt me at all. And things like I would be sitting on a lounge chair at the pool and I had to roll a towel and stick it under my knee, which I have to do with the other one now, which I didn't have to do two years ago when I had this one done, because it just can't be like, I don't know, it just hurts if I don't. I I don't have that problem anymore. And guess what? My ankles and feet and toes don't crack like they used to. Like my alignment is so much everything is so much better. It's wild. Excuse me, it's wild. so while it was difficult and terrible and I will dread doing the other one, I will go at it the same exact way and I will do the phys physical therapy, do the hard thing. push through the pane and get the other one done. It took me a while. My mother actually came for a month, went home for a week, and had to come back because I still couldn't drive. so that part was hard. I mean, I have young kids that are going to school every day and going to sports and doing all kinds of things, and I am stuck at home. It was depressing. And I don't ask I don't like asking for help. And I didn't want my mother to do my laundry for a month and a half. She's happy to do it. And it's fine and everything worked out fine, but there was a real mental gymnastics I had to do to get through all of that. Sitting down and watching somebody else do the job that I'm supposed to be doing. That was the heart. That was hard. The initial pain was pretty bad. and then the mental gymnastics of watching some my mother do the job that is my job to do, that I love to do, take care of my family. And I know that sounds crazy, like I'm sure you're listening saying, I would love to not cook dinner for a month and a half and not do laundry for a month and a half. But yeah, you'd love it if you didn't have to do it. If you like won the lottery and you could pay someone to do it. That would be amazing. But when you physically can't do it and you have to watch somebody else do it for you while you're sitting there watching them do it. That I think I grossly underestimated that part of it. I think it's so funny how God works because he was telling me you gotta take you gotta relax, you gotta take you gotta take it easy and you gotta ask for help. I don't like doing that. I don't like doing either one of those. I have I have come to appreciate relaxing and taking it easy. I have no other choice. I if I don't, I get sick, so I have to. but letting people help is really difficult. And even my own mother was hard. She was amazing. It didn't make me a failure, I guess. Is what it was felt I felt like a failure. And I felt really sad. And you know, it's hard not to thank the why me. I don't think why me all that often, but sometimes when you're like I guess I was really depressed after I would say I was kinda depressed after that surgery. And I think part of it is the anesthesia. but part of it was just like, This is my third surgery in three years, four years, and I'm done. I'm done feeling like crap all the time. So but it's so much better now. So much better. I'm so glad I did it. I can't wait to get the other one done. you know. I did it in the September, which is still hot in Charleston in September and that part stumped because I didn't go to the beach, which I'm a beach person. And you I don't go that much in July and August because it's insanely hot. So September's like the time that I would try to go. September, October, November. And I couldn't you can't walk on the sand with a total knee replacement. It's just too difficult. So I didn't and course until this incision clean clears out anyway and blah blah blah blah blah. So yeah. Also you have to take an antibiotic to get your teeth cleaned. For the rest of your life. I guess every surgeon is different, but that's the what my surgeon recommends. So I don't like that. So I put off getting my teeth clean, but I'm very particular about keeping them clean. So, anyways, that's that. The mentalness of being 47 years old now and three surgeries, a fourth one looming. Hopefully, in the next two years I'll get that done. I need a good health insurance, and y'all know my health insurance nightmare problem right now. actively talking to attorneys, but we'll see. I don't mean I'm gonna sue anyone or want to sue anyone or anything like that. I just need to know that I have some protection against this outstanding bill. So that's that. if you have any questions if you have if you're looking at a surgery and you would like to chat about it, please, please, please reach out to me. I will take you along the journey of when I do decide to get my left knee done. It should be easier because I can drive as soon as I'm off medications with that. the not being able to drive thing was tough when you got middle school kids, or they were younger then. Well, no, they were middle school, I guess. So, anyways, that's that. My big takeaway, I'd say, is the whole you're too young theme of Living with an autoimmune disease and having it result in these types of surgeries. People tell me that all the time. You're too young to have that, but I'm not because I do. And I got it at twenty-nine. So, you know. but I'm a 45 year old mother and hearing from another 45 year mo fear hearing another 45 year old woman, I ne I'd say I had a total knee replacement. I knew one other woman who did it and around my age, and she does not have an autoimmune disease, but she braced me for about for how bad it was. So I just really hope I think I'm rambling a little bit here, but I hope that this episode serves you well and that you don't feel so alone. You're not the only person who goes through these types of things. I certainly feel a lot of times that I am, which is why I wanted to build this community. but yeah. That's it. That's all I got for you guys today. I have an interview coming up with another guest soon, and I'm excited about that one. So I'll get that out to you guys in the next couple weeks. But thank you all. If your kids are back in school, congratulations. Welcome to the school year. And if you're still writing out the next couple of weeks, have the best rest of your summer. Thanks, y'all.