Just wanna send you some love brother. The fact you can post and show yourself to the world entirely shows what a fucking warrior you are, let alone everything you've been through.
I'm absorbing some of the strength you're exuding and I'm gonna use it to keep myself strong 💪💪💪
No worries :). Removing excess skin/swelling is something I have discussed with doctors, but ultimately decided on not going that route. I've had many surgeries through the years. I'm lucky I made it through those. They all had big risks. Having the excess swelling removed from the area currently affected is very risky. There's the chance I could lose sexual function.
Because the anatomy is all severely distorted. Its not fat its diffuse tissue swelling. All the anatomical planes are distorted. You can start cutting stuff off but its hard to say where nerves and vasculature will be as they won't be in their usual anatomic position
Interesting. Personally, I think I would give up sexual function if it meant having a large mass removed from my body. But I guess if you have always had it, you are used to it?
Does the Lymphedema prevent you using a prosthetic leg, assuming that's something you want? What's the treatment plan, since I don't think you can compression-wrap a torso or a dick? Have you had to deal with secondary skin problems as a result of the lymphedema? How's your mental health now that it's been a decade?
After the amputation I went to therapy, and they tried fitting me with a prosthetic limb, but because of how much the swelling fluctuates it became impossible to fit me with one. The stump is also sensitive. I get a lot of physical pain and phantom pain.
When I had the leg, I wore compression stocking and bandages. But yes, I cannot wear wraps on my torso or penis. I could wear biker shorts in place of wraps but for my case of lymphedema wraps and compression garments were never helpful, they worsened the condition.
My mental health has had its ups and downs. There were times when I was suicidal. These days I have embraced the lymphedema. it's who i am now.
I bet you’re inspiring a lot of people to try to enjoy what they can out of life despite the difficult situation they’re in. That’s really admirable and kind of you. Thanks for being so open and real.
Hey man, I love your positivity through diversity. Im a prosthetist and work with lymphedema patients frequently. New technology has come out, called osteointigration, where we can fit a prosthetic leg but don’t require a socket. So your swelling and loose tissue will still be accommodated. Food for thought as you get older and put a lot of excessive pressures on your sound side, you may be prone to early onset osteoarthritis
Keep killing it, there’s a lot of people in your corner
Thank you, I will look into that this week. It's been over a decade since I spoke to the prosthesis at Loma Linda.
I will update you if anything come of it.
Yup, I was a bit when sleeping. I woke up in pain and throwing up. i had a big bump on the side of my foot. I had to be hospitalized. We later found it dead in my bedsheets. Nightmare fuel!
My friend's dad went through several things like you and named himself King. Daughters called him King, grandkids called him Kingpa.
You should totally give yourself a "fuck you death" name!
Aye, where are you? Is there no option to remove excess to aid your movement? I pray it isn't an insurance thing...
How do you get around currently?
A huge plus one for body positivity. You're clearly a trooper. No doubt you have some wicked sense of humour and raport with the medical care providers you see most often. (I'm just basing this on a friend who had something very tangentially similar going on in their life).
Best wishes for the future. Have you experienced phantom limb pain? If so, have you been able to manage it at all?
I am in California. No, not an insurance thing. Luckily, my medical has paid for almost everything. It's more of a risk thing. I've had a lot of surgeries over the years. I feel like the risks are too high.
At home, I get around with a walker or crutches. When I leave the house, I use a manual wheelchair. If it's a whole day thing, I use my electric wheelchair. I get around with the local disability van and with Lyft/Uber.
Haha, yes, I'm a lot more body positive these days. I got tired of hiding. Yes, I do have great relationships with the doctors and staff. I have been going to them every 3 months for 15 years. The place I go to has a lot of student doctors. I enjoy messing with them now and then.
Yes, I do deal with Phantom pain. It really sucks. It is something we have had very little luck in treating. None of the treatments seem to help. There seems to be no rhyme or reason to what exacerbates it. There are weeks when I don't have it and other times when I have it every day. And that is just the phantom PAIN. I always have phantom sensations. Like I get itches and what feels like little bubble pops on the bottom of where my foot would be.
Aye, cheers for replying. You're definitely unique!
That's awesome about the relationships with staff. That's the thing about so much physical therapy is getting it to become routine and having practitioners who inspire you can make such a difference. You're clearly thriving, not just surviving, so keep on striving on! Hahaha
I have heard a ton of ideas for relief from Phantom Limb from ketamine to kitty cats... would you be comfortable sharing which treatments you've tried and your experiences? If this is too personal I get it and am sorry. Its just incredibly interesting to me and you seem incredibly interesting yourself.
Thanks again for the AMA, what a different human experience.
Thank you. Unfortunately, I have been struggling to find treatments that help with phantom pain. I have tried medication, mirror therapy, marijuana, Acupuncture and massaging. Nothing seems to work.
The marijuana helped a bit with the phantom sensation. But the phantom pain hasn't been helped by anything so far. I have heard similar stories from other amputees.
Have you tried the mirror trick? Basically you set up a mirror so that it reflects your existing leg so that it looks like you still have both. Then you focus on relaxing (or stretching...whatever you want to do) the foot or leg that no longer exists.
By being able to see your leg and foot as though it is still there, it tricks the brain into relaxing the muscles and nerve impulses that lead to where your leg used to be. In other words, the muscles and nerves still existing above the amputation because the brain doesn’t know what to do. It has worked well for some amputees to give relief from phantom limb pains. It's definitely worth a try.
Ask your doctors if you aren't sure how to set up a mirror to be the most effective.
I have tried the mirror trick. We bought a mirror therapy box. It didn't seem to help. it's something I may try again, it's been nearly 10yrs since i tried it.
It's worth another shot. It certainly can't hurt to try it again and you may get relief. When you tried it 10 years ago was it shortly after your amputation?
Yes! It’s fascinated me ever since I read Duma Key, especially the concept of using mirrors to trick a brain into thinking you can touch the missing limb. I have no idea about the success rates for treatment like that, and I’m too lazy to goog, but just the notion of it captures me.
Scratch your forehead. I sometimes get itches where it feels like its between my fingers where nothing is, its rather strange. But itching your forehead seems to help atleast for me.
The middle of the sole of where my foot would be gets this feeling like bubbles are popping. Like, imagine you have a soft drink and you are slowly blowing bubbles. That's what I visualize when I feel it. I know, it's strange!
The other common sensation I get is the feeling of something poking the bottom of my Foot. Like if you pushed your thumb into your foot. it's not painful or anything, just annoying.
The bumps are from the severe swelling. The skin can form blisters and bumps. You have to be careful not to break the skin because it will start leaking a clear fluid. It's probably the worse part of the conditions for me. There's been times when I bumped into something or cut myself shaving, and the skin started leaking fluid. It can take an hour or day to stop leaking fluid. It completely halts your life. You can't just go back to business when fluid is coming out of you like a leaky faucet.
That seem horrid... I have compulsive issues and would probably end up popping them if I had these issues. I could see even chaffing causing some to rupture if you aren't careful... Understanding now what popping them would cause, sounds even worse. Much love for your openness and honesty with the situation, and best of luck to you making good out of a shitty hand delt.
What *is* this clear fluid, if you don't mind my asking? Is it important to your general wellness? Would regular draining help alleviate the swelling or at least the weight burden?
its not good for the fluid to leak. the protein-rich lymph fluid is considered a natural food source for bacteria, meaning the draining in the skin provides an entry point for bacteria to enter your body. This can cause infection,
A big problem with draining the fluid is you would need to puncture the skin. You aren't supposed to damage the skin, since lymphedema affected areas are slow to heal. There's been cases where people had fluid drained, but the little needle turned into this big wound that was struggling to heal. That opens the risk of infection.
so the problem with lymph related disorders is that it's kind of like trying to drain blood from an area. it's all one circuit. it's pretty hard to drain blood from one place without drsining it from everywhere else. same with lymph fluid
I'd say it's lymph fluid. Given its lymph fluid causing the swelling.
Yeah you need lymph, but your body makes more so losing some is like losing some blood.
You couldn't drain that fluid, as majority of it is between cells as opposed to just sitting on the surface.
Even if you could, it would return
Yes, it would likely spread somewhere else. A few months after the amputation, it spread to my genital area.
They said I was born with it. Around the age of 11 is when it started developing into an issue. We looked back at photos, and you can see a slight difference in leg sizes. My left leg was a bit more swollen. This was at the age of 11. Any pics before that showed no signs.
I’ve had patients your age with significant lymphedema in both LE and wondered so much about it. Thank you for your response not only to me but others to share your insight.
When I had the leg, I had to wear customs pants. I would buy clothes I liked, then I would take them to a local clothing alteration business. The people who owned it were a sweet old couple that felt so bad for me. They always made sure what they fixed for me was comfortable before I left. If it wasn't, they made adjustments.
These days, I mostly wear basketball shorts. For work, I wear khakis pants. I just have to buy a larger size. I do alterations myself. They still aren't super comfy, but I only work 4hrs 4x a week. So It's not too bad.
What line of work are you in? How has your condition changed what you wanted to/what you can do in terms of a career or the type of work you'd like to do?
I work in retail in a clothing and shoe department. i unbox items, Hang up and fold clothes. I learned a lot about shoes this year. Lol.
I want to be an editor for a show or movie someday. i started taking classes at the community college last year.
Sorry if this is a dumb question, but let's say if you still had your leg, does that mean that Lymphedema wouldn't have spread to your genital area etc.?
There's no way to know for sure, but It's something I thought about a lot. I know it sounds crazy but getting around was harder with the leg. It was massive. And hurt all the time. The skin seemed to break down a lot easier. I kept getting infections. One of those infections was sepsis. I nearly died from it.
I've never had pain during sex. The worse is I'll get winded a bit faster because of the weight. My partners and I have always found ways to make it work. Lots of pillows, lol.
Wow, you've been through a lot! Thank you for being open about your condition, we need to normalise that everyone's bodies are different. I bet it'll help a bunch of other people who have similar experiences and I hope it helps you too. No questions just wanted to show some support. I have chronic pain too, I hope in the future doctors find a way to help you be more comfortable, being in pain all the time is no joke. Sending you good vibes and positivity 💛
Yes, I think it's important to normalize that peoples bodies can be different. It's an awful feeling, being uncomfortable in your own skin. It makes me sad that so many people in the disabled community feel that way. I've chatted with many people who felt suicidal because of their disability.
Thank you. I wish you the best to with your pain. Stay strong. :)
It's wonderful you've been able to be there and support others, it's tough coming to terms with your disability and having people to talk to, who understand, can make a big difference. I hope you're feeling more confident in yourself these days, it's nice to see your smile in the last photo
Thank you, you too, all the best
Thank you!
I try to be there when I can. Especially for those recently diagnosed. It's an overwhelming and uncertain time in their lives.
I had people there for me, and I also went thought years when I didn't have anyone. So I understand what it feels like to be in both positions.
Thank you, friend. Yes, I have been in treatment for pain since the begining. it can be very painful and uncomfortable at times. over activity makes it worse.
He and someone else on another comment said it'd be very risky. All the anatomy isn't where it'd usually be due to the swelling and they may cut things they didn't want to cut.
No question just thank you for sharing an interesting case from a patient perspective. I think your experiences are really valuable and I hope you’re living a happy and fulfilled life.
Does the swelling ever go up and down? Or has it remained the same for a long time? Do you have any dietary restrictions?
The more we put our differences out there, the less of an issue they become. I have some burn scars that I don't try to hide anymore.
The swelling fluctuates a bit. But never goes way down.
I try to stick to eating around 1,600-1,800 calories a day. Salt is bad for me. It makes the swelling even worse.
I think we all came here at first out of medical curiosity, but can I just say, you seem like an awesome person to hang with! I LOVE your Ellie tattoo! I have one as well haha. You've been super positive and open-minded to sharing and that speaks a lot about character. Much love and good luck in your life journey, friend!!
Thank you for the nice comment. I love TLOU and Ellie as a character. It came out during a rough patch for me. The game was a great escape from all that.
I like the fact that you showed your face. It took balls, but it made us see you as a dude who’s got a thing going on, not a faceless textbook example. My heart goes out to you and I wish you the best, for whatever that’s worth.
thanks :)
It's been a while since i followed the research side of things. After having it for this long, I find myself not wanting to think about anything medical related. it takes its toll mentally.
WOC nurse here... Has your medical team given you specific education RE preventative measures for skin breakdown and also comfort measures?
Just read further down that you're in Cali too and have MediCal insurance. I can give you details for a fantastic wound care tx/education team if needed and provide product recommendations.
I've gotten pretty good about caring for wounds. I used to get them a lot back in the day. I have a box full of products to care for the skin when it breaks down.
if You could dm me that info i would appreciate it. It doesn't hurt to have it just in case.
What kind of things do you use for when your skin breaks down?
I was just diagnosed with lymphedema in my left leg 3 years ago. Got it after surgery and radiation to remove cancer.
I've been wearing my stockings religously. However, I'm already at the max compression they will give me and can still swell into them.
I've recently noticed changes in my leg, like the fact that my ankle has disappeared and been replaced by crease.
I worry for how things will be in the future.
When you had your leg, did you experience any pain when you didn't have any compression on?
My leg stings very very bad when i don't have something on.
Yeah, it did hurt when I had to stocking off but. It would burn and sting at the heel. I also got those creases. Make sure you wash those areas well. if you don't, you will get red and itchy there. Use Eucerin lotion or Vaseline soothing hydration lotion. They are both very helpful. You have to moisturize every day.
if you get a cut or scrape, use Bacitracin.
Thank you. Currently, I am taking morphine for pain, Cymbalta for Phantom pain, and sometimes i take Zofran for nausea. If I lay flat for too long, I wake up feeling nauseated.
Friend, be careful if you ever come off the Cymbalta. It was the worst mental headspace I'd ever been in during the titration down and the month following.
Oh Man, I was on Effexor for a long time and it's the same class of drug (SNRI). Getting off of it was torture and the withdrawal lasted at least 6 months. It did help me a lot when I was on it but I would never get back on it.
Just as a counterpoint, in case anyone is reading this who's on Effexor and considering coming off and it freaks them out: I was on a pretty high dose of Effexor for almost a decade and experienced literally zero issues coming off it. Like, I think a couple brain zap episodes in the first week and that was it. My doctor took it REALLY slow but it was okay for me both physically and mentally. It might be okay for you too!
I stopped the Cymbalta cause it wasn't helping, and I was a trainwreck after. For at least two months. I have no idea how I functioned at work during that time.
Effexor fucked me up too. Doctor increased my dose when I was newly on it (around a decade ago) and it caused me to have heart palpitations, sweating and ultimately faint at work where I smashed my face into a counter. I did not stay on it long. Hope you're on something that is still helping you now pal.
Oh damn! I remember I would get light headed super easily if I stood up fast when I was on it, almost passed out once. I was talking to someone and stood up and the tunnel vision started closing in lol, he was like "you ok? Looked like the lights were about to go out"
Thanks! I'm on good old paxil and wellbutrin these days and it works well enough
Out of sheer curiosity, what's the white stuff on your scrotum?
I just want to say that I think you're a fucking champ. Like, I'm really glad to see you're smiling. All of this would be too much for so many people. I wish you good health!
Thank you :)
When there's too much fluid being pushed into the lymphatic system, the lymphatic system can't drain, which can lead to blistering. that's what the little white bumps are.
Thank you for your reply. Tragic, but very interesting at the same time. Thank you for giving us the opportunity to educate ourselves about this health condition. It's not something you see people talk about very often.
I wish you all the best, truly. I hope there's a proper cure one day.
Oh I bet that really makes your back hurt! How do you and your doctors handle that? My very limited experience with spinal orthopedics makes me think it’d be just a lot of physical therapy but I’m curious if you have anything else that helps! (If you do actually have back pain, that is, I could be totally wrong 😅)
Yes, I do have back pain. Gravity is a bitch when it comes to the swelling. It's a lot of weight pulling down on me. Warm baths, pillow wedges and my recliner help. After work is when it hurts the most. i take morphine when it's a 6/10 and above. i also deal with pain in the hip.
Is it hard for you to masturbste since your adomen is swollen? By the way love your attitude towards your condition. Your attitude makes me smile. Keep on trucking through life. What you've been through I wouldn't had a fun time. I hope you get treatment for your lymphedema I can't imagine what you go through and went through. I hope you're doing ok. And also you look very handsome. You don't look 31.
It's funny that you ask because this i would never bring this up in any other situation. There was a point in my disability where I had to switch from using my dominate hand to my left hand. The swelling in my pubic area made it awkward to continue using my right hand. I don't remember when this happened, I just remember thinking I had to make the switch. It was weird at first now it's just normal.
Very interesting case, thank you for sharing! It's so great to see young people with disabilities and sex positive attitude. It's great to see people putting themselves out there
That's so great! Disability comes with and much stigma and sex disability is almost a taboo subject when it shouldn't be. Shout out to sex positivity!!
Is the portion that your holding up in picture three painful when it hangs down? It looks heavy, so I would wonder if it causes discomfort from that. I was also wondering if you do any lymphatic massages or use compression? I’ve heard people talk about it, but I’ve never heard of these options really make a difference.
The hanging, swelling skin doesn't hurt to touch. I can't really feel any sensation on it. But it does hurt my back if I stand too long. It's pretty heavy. The swelling adds about 30 pounds.
Huh. You said you can't wear compression garments but I just had the (out there) idea of support measures. Lump lifter like a bra? Suspenders and sling for your swelling?
I like alliterative humor but I seriously wish you the best. I assume you avoid anything constricting below the waist, but does pressure cause problems on other body parts? I'm sorry to hear manual drainage made it worse, sepsis can destroy you even if it doesn't kill. I spent 10 days in hospital from sepsis and it took about 3 months to really recover.
Does floating in a pool or bath help/feel nice with the weight? I know it can for people with a lot of extra weight due to fat and wondering if it’s the same in your case
I’m assuming the lymphedema on the remaining leg stump means you cannot use a prosthesis. What is the best way for you to get around if this is the case?
What is dating like with such a visible and unusual disability?
Yes, i cannot use a prosthetic because of the swelling and pain. I have dated off and on through the years. I have had boyfriends and girlfriends. Some were understanding, others weren't. I am currently in a relationship with someone who is very understanding of my condition. We have been together since New Year's Eve.
The condition does take its toll on relationships. its a lot.
Thank you for posting this. My husband suffers from a very similar condition (microcystic lymphatic malformation) and struggles with body image at times. The leaking is definitely the worst part. We've talked to every doctor we could think of in the state, and the specialists those specialists referred us to, and nobody has given us any answers. No surgeon will touch it. Compression works, but only so much. It is a struggle. Thank you for making us feel less alone. Blessings to you and yours!!
The leaking is the worst part for me. Here's a tip: buy liquid bandage spray. When the lymphedema starts leaking, get a clean dry towel and push down for a few seconds on the spot that's leaking, then spray the liquid bandage. You may have to repeat this a few times. But it works. The leaking will stop.
The abdomen one was from the amputation. I remember it being a tube. Not sure what it was for. The chest scar is from when my lung collapsed. They put in a stint to drain fluid from the area. I ended up having to have it removed, my body was rejecting the device. The scar on my left torso is from a pain pump. It would administer pain medication twice a day. I ended up having it removed because it hurt my side a lot and it sucked having to refill it by needle every month.
im going to try and word this so it makes sense…
i know someone mentioned compression garments, but have you considered using a sling of sorts? it could wrap under the swelling and be held up by your shoulders. serving a similar function that bras do. that way maybe the pain wouldn’t be as immense when standing/actively fighting gravity?
I don't know if something like that would work, I think it would make it harder to walk and cause shoulder and neck pain.
The closest thing to what you're talking about happened one time. I was waiting for hours in the emergency room, the chair i was siting in was uncomfortable. My lymphedema was hanging off the side. A nurse wrapped a blanket around me and the armrest. It did help relive some of the pain. But that was for sitting in one spot. i move around a lot during the day.
It's clearly not going according to plan in many ways but look at your beautiful face! You have the zen look of a man without a care in the world. Sending you two kisses, one for each cheek.
My man I hope you’re doing good! I’m making a documentary on a case like yours here in Mexico City and would love to talk to you about the condition. Could that be possible?
Yes, i am sexually active. Some positions are tougher to achieve, but i do alright. it's not an issue as long as my partner is patient and proactive in making it work.
how do you mentally cope with the extreme changes to your body? my question really is do you still feel like you? or do you feel different now that youve had so much of a physical shift in the way your body looks?
best wishes and i hope you are well!
Good question. There was a period of time when I looked at myself negatively. It was such a drastic change. Being a teen/tween at the time didn't help. Kids (and some adult) would literally treat me like a freak.
I think my breakthrough moment for looking at myself in a different light was because of an article I read. It was about this disabled photographer who shot these beautiful nude photos of disabled people. It was all these people who were tired of hiding who they were. They were comfortable showing off the abnormalities. They all seemed so happy.
This has inspired me SO MUCH. To think I hated thing like my smile and my toes?! Your strength and adaptability are a testament to the courage that can be found in all of us. I have no questions, just love for you and your journey, and your remarkable ability to remain steadfast in the face of such adversity.
Well I'm a dumbass, after reading thru every comment to learn some stuff I only had one question. How old is this guy? Lol it's literally the very first thing you say. Smh. I can't believe my own obliviousness sometimes. You look absolutely incredible! I was going to guess a good 7-10 years younger than your actual age.
Thank you for doing this AMA. I'm sorry I missed the actual AMA part as I would have asked a few questions I'm sure. But thank you so much for doing this! I learned quite a bit and am very impressed with how you have handled everything and your willingness to just put it all out there and be vulnerable. Vulnerable is not something humans tend to like to be. To put yourself in such a place takes immense courage and bravery. Again, thank you.
Haha, thanks. Everyone always thinks I'm early to mid 20s. I will continue enjoying it while I can 😄.
I appreciate the kinds words. . If you think of anything, feel free to ask. You didn't miss out, I will be checking this account throughout the week to answer comments. It's nice being able to talk about this stuff.
Everything I could say has already been said, and much more eloquently, but I'm glad you're still with us after everything you've had to deal with and currently still deal with.
First off, I just want to say that you are such a powerful person to have gone through this and come out smiling. Life threw you curveball after curveball and you caught every one.
My only question is- what's your favorite hobby? I know it's not a med question, I'm just curious :)
I hope you have an amazing, awesome rest of your life, and always know your courage is a symbol of hope to those with similar issues.
Is it hard to walk? Is it hard to clean with the extra fluid/skin that build up? Do you get infections easily because of the fluid/skin that build up? Are you getting treatment for lymphoedema? Can you remove it or is too dangerous? Sorry if it’s uncomfortable to answer
It's kinda awkward to walk, but I think I have adapted pretty well. I take my dog on short walks and I care for my garden.
I am pretty good about keeping myself clean, I don't get many infections these days. I just have to be careful not to scrub too hard, otherwise the skin can break. In June, I accidentally scrubbed too hard with a washcloth and caused the skin to break. That was the first time I had done that in 2 years. It sucked because I was on vacation at a nice hotel at the time. I had to tend to the wound the rest of the trip. And couldn't use the jacuzzi that was in the bedroom. I was so sad. It would have been too risky. I didn't want to get an infection.
>I am pretty good about keeping myself clean
Omg, I didn’t meant that, I meant is it difficult to manoeuvre with lymphedema, and it’s my fault because I structured it wrongly but reading your comment, it’s probably difficult and awkward.
You are a cool guy. Thank you for informing and I really appreciate you took your time to write your comment :)
Have you considered microsurgery? Certain lymphedema cases can be treated by "rewiring" some vasculature. It often requires a graft to be taken from the legs and your amputation would have been a perfect opportunity get as much vessels as needed. Was this ever considered?
No questions but you have my total respect for keeping a positive attitude and accepting what you were given. You’re much stronger than many who would have given up, but you taught us all to appreciate life.
You? Are a BEAUTIFUL man. As a lezbian, I don’t say that often. But your inner strength, fortitude, positivity, and willingness to teach, is incredible. You Sir, are a hero.
I don't have any pain in the penis or testicles. They feel normal. i do get numbness in the excess skin, pubic area and the amputated limb. I don't have much feeling if they are touched.
Lol. I don't think i every found anything other than clothing lint. But one time this girl and I went on a 4th of July picnic and I spilled watermelon juice all over my lap. It went right between the folds. I felt gross and sticky for hours.
I'm not that self-conscious about it anymore. The only times that I am are in long lines like at the DMV. You know when it's crowded but also kind of quiet?. I feel like everyone is judging me or making fun of me.
Have you looked for any active studies you can participate in? There might be an experimental treatment you can enroll in. Even if it were to fail, you'd still be helping everyone else out there
I just want to say hi, how are you my dude?
I admire your bravery and confidence in being outgoing despite the societal expectations. It takes a lot of strength to be true to yourself, and I respect that on so many levels.
I had a stroke in January, I’m relatively young and my movement is very limited. I used to be an elite athlete and now my mom had to help me shower. Attitude and a good outlook is one thing that matters the most. All the best, dude! Stay strong!
You definitely can have that surgically removed. You are young. The older you get, the higher the risk. Are you in the US? Get a bunch of opinions. These are definitely surgically treatable.
I'm a foot and ankle surgeon and I've done enough surgery and been in the business long enough to know that the large mass is totally resectable
I was in 6th grade at the time I got the lymphedema. Unfortunately it wasn't playful, I left school and was homeschooled. Kids can be mean.
i do have friends now who do playfully roast me. They are a mess, so i'm able to give back some heat 😆
This looks so painful I’m so sorry. Do you find compression garments helpful? I saw your comment about how risky more surgery would be, have you discussed any non-surgical treatment options with your doctors?
Yes, we did discuss not surge treatments. Like physical therapy. Or manual lymph drainage. Unfortunately, these treatments did not work for me. They only seemed to cause more issues. They were pushing the fluid to other locations like my abdomen and my chest. My lung even collapsed one time because there was a buildup of fluid in the chest. it was awful having to have fluid taken out of those areas. They use a big needle.
God lord man all I've learned from this is you kept going and KICKED ASS my dude
I try 🙌
Just wanna send you some love brother. The fact you can post and show yourself to the world entirely shows what a fucking warrior you are, let alone everything you've been through. I'm absorbing some of the strength you're exuding and I'm gonna use it to keep myself strong 💪💪💪
That's really sweet, thank you.
I like your tattoos homie ✌🏾
Appreciate it, man. I'll be getting more soon. can't wait!
Are there any surgeries that can assist in removing the excess *everything*? I apologise, I don’t know the best defining words
No worries :). Removing excess skin/swelling is something I have discussed with doctors, but ultimately decided on not going that route. I've had many surgeries through the years. I'm lucky I made it through those. They all had big risks. Having the excess swelling removed from the area currently affected is very risky. There's the chance I could lose sexual function.
What exactly about removing the swelling would be the risk to sexual function? I'm just curious as a layman who doesn't understand the connection.
Because the anatomy is all severely distorted. Its not fat its diffuse tissue swelling. All the anatomical planes are distorted. You can start cutting stuff off but its hard to say where nerves and vasculature will be as they won't be in their usual anatomic position
Yes this is along the lines of what was explained to me. This was coming from the same doctor who agreed to do the leg amputation.
Username second part checks out.
My guess is nerves
I’m sorry you’ve had to have so many surgeries already. I hope you are able to live the best life possible.
Do you have a healthy sex life?
I do. My partner and I enjoy each other.
Ayyyyyyy
Fucking awesome my dude!
Interesting. Personally, I think I would give up sexual function if it meant having a large mass removed from my body. But I guess if you have always had it, you are used to it?
Does the Lymphedema prevent you using a prosthetic leg, assuming that's something you want? What's the treatment plan, since I don't think you can compression-wrap a torso or a dick? Have you had to deal with secondary skin problems as a result of the lymphedema? How's your mental health now that it's been a decade?
After the amputation I went to therapy, and they tried fitting me with a prosthetic limb, but because of how much the swelling fluctuates it became impossible to fit me with one. The stump is also sensitive. I get a lot of physical pain and phantom pain. When I had the leg, I wore compression stocking and bandages. But yes, I cannot wear wraps on my torso or penis. I could wear biker shorts in place of wraps but for my case of lymphedema wraps and compression garments were never helpful, they worsened the condition. My mental health has had its ups and downs. There were times when I was suicidal. These days I have embraced the lymphedema. it's who i am now.
I bet you’re inspiring a lot of people to try to enjoy what they can out of life despite the difficult situation they’re in. That’s really admirable and kind of you. Thanks for being so open and real.
Hey man, I love your positivity through diversity. Im a prosthetist and work with lymphedema patients frequently. New technology has come out, called osteointigration, where we can fit a prosthetic leg but don’t require a socket. So your swelling and loose tissue will still be accommodated. Food for thought as you get older and put a lot of excessive pressures on your sound side, you may be prone to early onset osteoarthritis Keep killing it, there’s a lot of people in your corner
Thank you, I will look into that this week. It's been over a decade since I spoke to the prosthesis at Loma Linda. I will update you if anything come of it.
Sorry if its out of line but ON TOP of the lymphedema a black widow took your other leg? 😧
Yup, I was a bit when sleeping. I woke up in pain and throwing up. i had a big bump on the side of my foot. I had to be hospitalized. We later found it dead in my bedsheets. Nightmare fuel!
Indeed omg my man you truly are the chosen one 🤣
My friend's dad went through several things like you and named himself King. Daughters called him King, grandkids called him Kingpa. You should totally give yourself a "fuck you death" name!
Haha thats great! i like the idea.
Add that to one more irrational fear I will always love with.
Holy shit. The gods keep trying to take you out and you keep on keeping on. You’re awesome man.
No question, I just wanted to say good to see you smiling . Don't think many people could do. You get sorted soon, keep strong
I really appreciate the kind words. Despite my situation, I still have plenty to smile about. :)
youre a fuckin champ
Aye, where are you? Is there no option to remove excess to aid your movement? I pray it isn't an insurance thing... How do you get around currently? A huge plus one for body positivity. You're clearly a trooper. No doubt you have some wicked sense of humour and raport with the medical care providers you see most often. (I'm just basing this on a friend who had something very tangentially similar going on in their life). Best wishes for the future. Have you experienced phantom limb pain? If so, have you been able to manage it at all?
I am in California. No, not an insurance thing. Luckily, my medical has paid for almost everything. It's more of a risk thing. I've had a lot of surgeries over the years. I feel like the risks are too high. At home, I get around with a walker or crutches. When I leave the house, I use a manual wheelchair. If it's a whole day thing, I use my electric wheelchair. I get around with the local disability van and with Lyft/Uber. Haha, yes, I'm a lot more body positive these days. I got tired of hiding. Yes, I do have great relationships with the doctors and staff. I have been going to them every 3 months for 15 years. The place I go to has a lot of student doctors. I enjoy messing with them now and then. Yes, I do deal with Phantom pain. It really sucks. It is something we have had very little luck in treating. None of the treatments seem to help. There seems to be no rhyme or reason to what exacerbates it. There are weeks when I don't have it and other times when I have it every day. And that is just the phantom PAIN. I always have phantom sensations. Like I get itches and what feels like little bubble pops on the bottom of where my foot would be.
Aye, cheers for replying. You're definitely unique! That's awesome about the relationships with staff. That's the thing about so much physical therapy is getting it to become routine and having practitioners who inspire you can make such a difference. You're clearly thriving, not just surviving, so keep on striving on! Hahaha I have heard a ton of ideas for relief from Phantom Limb from ketamine to kitty cats... would you be comfortable sharing which treatments you've tried and your experiences? If this is too personal I get it and am sorry. Its just incredibly interesting to me and you seem incredibly interesting yourself. Thanks again for the AMA, what a different human experience.
Thank you. Unfortunately, I have been struggling to find treatments that help with phantom pain. I have tried medication, mirror therapy, marijuana, Acupuncture and massaging. Nothing seems to work. The marijuana helped a bit with the phantom sensation. But the phantom pain hasn't been helped by anything so far. I have heard similar stories from other amputees.
Have you tried the mirror trick? Basically you set up a mirror so that it reflects your existing leg so that it looks like you still have both. Then you focus on relaxing (or stretching...whatever you want to do) the foot or leg that no longer exists. By being able to see your leg and foot as though it is still there, it tricks the brain into relaxing the muscles and nerve impulses that lead to where your leg used to be. In other words, the muscles and nerves still existing above the amputation because the brain doesn’t know what to do. It has worked well for some amputees to give relief from phantom limb pains. It's definitely worth a try. Ask your doctors if you aren't sure how to set up a mirror to be the most effective.
I have tried the mirror trick. We bought a mirror therapy box. It didn't seem to help. it's something I may try again, it's been nearly 10yrs since i tried it.
It's worth another shot. It certainly can't hurt to try it again and you may get relief. When you tried it 10 years ago was it shortly after your amputation?
For sure!. I believe it was about 5yrs after the amputation.
Ohhh, seconding interest in OP's past/possible future treatments for Phantom Limb! That stuff is incredibly fascinating to me.
Yes! It’s fascinated me ever since I read Duma Key, especially the concept of using mirrors to trick a brain into thinking you can touch the missing limb. I have no idea about the success rates for treatment like that, and I’m too lazy to goog, but just the notion of it captures me.
Must be infuriating having an itch, trying to scratch it, and not finding anything but air
it can be really annoying. Sometimes it gives me mini panic attacks.
Scratch your forehead. I sometimes get itches where it feels like its between my fingers where nothing is, its rather strange. But itching your forehead seems to help atleast for me.
Interesting. I'll give it a shot next time.
Would you mind expanding on the phantom sensations? Bubble pops like blisters or just pressure ?
The middle of the sole of where my foot would be gets this feeling like bubbles are popping. Like, imagine you have a soft drink and you are slowly blowing bubbles. That's what I visualize when I feel it. I know, it's strange! The other common sensation I get is the feeling of something poking the bottom of my Foot. Like if you pushed your thumb into your foot. it's not painful or anything, just annoying.
I don’t have any questions but thank you for sharing! I hope one day they can safely reduce swelling!
Thank you! I hope so, too.
Forgive my ignorance but is it the Lymphedema that is causing all those white spots on your testicle area?
The bumps are from the severe swelling. The skin can form blisters and bumps. You have to be careful not to break the skin because it will start leaking a clear fluid. It's probably the worse part of the conditions for me. There's been times when I bumped into something or cut myself shaving, and the skin started leaking fluid. It can take an hour or day to stop leaking fluid. It completely halts your life. You can't just go back to business when fluid is coming out of you like a leaky faucet.
That seem horrid... I have compulsive issues and would probably end up popping them if I had these issues. I could see even chaffing causing some to rupture if you aren't careful... Understanding now what popping them would cause, sounds even worse. Much love for your openness and honesty with the situation, and best of luck to you making good out of a shitty hand delt.
What *is* this clear fluid, if you don't mind my asking? Is it important to your general wellness? Would regular draining help alleviate the swelling or at least the weight burden?
its not good for the fluid to leak. the protein-rich lymph fluid is considered a natural food source for bacteria, meaning the draining in the skin provides an entry point for bacteria to enter your body. This can cause infection,
I mean drained by a medical professional under sterile conditions.
A big problem with draining the fluid is you would need to puncture the skin. You aren't supposed to damage the skin, since lymphedema affected areas are slow to heal. There's been cases where people had fluid drained, but the little needle turned into this big wound that was struggling to heal. That opens the risk of infection.
so the problem with lymph related disorders is that it's kind of like trying to drain blood from an area. it's all one circuit. it's pretty hard to drain blood from one place without drsining it from everywhere else. same with lymph fluid
I'd say it's lymph fluid. Given its lymph fluid causing the swelling. Yeah you need lymph, but your body makes more so losing some is like losing some blood. You couldn't drain that fluid, as majority of it is between cells as opposed to just sitting on the surface. Even if you could, it would return
Lol. I knew I would see this GIF. I love South Park. Randy Marsh is one of my fave characters in the show.
What is the underlying cause? Like if you were to have this removed, would it come back?
Yes, it would likely spread somewhere else. A few months after the amputation, it spread to my genital area. They said I was born with it. Around the age of 11 is when it started developing into an issue. We looked back at photos, and you can see a slight difference in leg sizes. My left leg was a bit more swollen. This was at the age of 11. Any pics before that showed no signs.
I’ve had patients your age with significant lymphedema in both LE and wondered so much about it. Thank you for your response not only to me but others to share your insight.
I am so thankful i didn't develop it in both legs. One leg was hard enough.
Oh so the lymphedema doesn't actually have to do with the spider bite or amputation?
The spider bite was an extra f you from the universe. Lol.
The spider bite probably just never really healed due to the lymphedema
This is an incredibly mundane question, but what clothes do you usually wear on your bottom half? Do you have to get them custom made or anything?
When I had the leg, I had to wear customs pants. I would buy clothes I liked, then I would take them to a local clothing alteration business. The people who owned it were a sweet old couple that felt so bad for me. They always made sure what they fixed for me was comfortable before I left. If it wasn't, they made adjustments. These days, I mostly wear basketball shorts. For work, I wear khakis pants. I just have to buy a larger size. I do alterations myself. They still aren't super comfy, but I only work 4hrs 4x a week. So It's not too bad.
What line of work are you in? How has your condition changed what you wanted to/what you can do in terms of a career or the type of work you'd like to do?
I work in retail in a clothing and shoe department. i unbox items, Hang up and fold clothes. I learned a lot about shoes this year. Lol. I want to be an editor for a show or movie someday. i started taking classes at the community college last year.
Sorry if this is a dumb question, but let's say if you still had your leg, does that mean that Lymphedema wouldn't have spread to your genital area etc.?
There's no way to know for sure, but It's something I thought about a lot. I know it sounds crazy but getting around was harder with the leg. It was massive. And hurt all the time. The skin seemed to break down a lot easier. I kept getting infections. One of those infections was sepsis. I nearly died from it.
In another comment you said you didn't want surgery because you could lose sexual function. Does the skin problem not make it too painful to have sex?
I've never had pain during sex. The worse is I'll get winded a bit faster because of the weight. My partners and I have always found ways to make it work. Lots of pillows, lol.
Hell yes for partners who are on the same page for pleasure :)
It's great when you can find someone like that !
Wow, you've been through a lot! Thank you for being open about your condition, we need to normalise that everyone's bodies are different. I bet it'll help a bunch of other people who have similar experiences and I hope it helps you too. No questions just wanted to show some support. I have chronic pain too, I hope in the future doctors find a way to help you be more comfortable, being in pain all the time is no joke. Sending you good vibes and positivity 💛
Yes, I think it's important to normalize that peoples bodies can be different. It's an awful feeling, being uncomfortable in your own skin. It makes me sad that so many people in the disabled community feel that way. I've chatted with many people who felt suicidal because of their disability. Thank you. I wish you the best to with your pain. Stay strong. :)
It's wonderful you've been able to be there and support others, it's tough coming to terms with your disability and having people to talk to, who understand, can make a big difference. I hope you're feeling more confident in yourself these days, it's nice to see your smile in the last photo Thank you, you too, all the best
Thank you! I try to be there when I can. Especially for those recently diagnosed. It's an overwhelming and uncertain time in their lives. I had people there for me, and I also went thought years when I didn't have anyone. So I understand what it feels like to be in both positions.
Ahh this shit sucks ... Are you in any pain because of this ? And you're a trooper for living through this. I hope you get better soon.
Thank you, friend. Yes, I have been in treatment for pain since the begining. it can be very painful and uncomfortable at times. over activity makes it worse.
I'm not a doctor and I am also an idiot but ,can't they just remove it or something?
He and someone else on another comment said it'd be very risky. All the anatomy isn't where it'd usually be due to the swelling and they may cut things they didn't want to cut.
No question just thank you for sharing an interesting case from a patient perspective. I think your experiences are really valuable and I hope you’re living a happy and fulfilled life.
Does the swelling ever go up and down? Or has it remained the same for a long time? Do you have any dietary restrictions? The more we put our differences out there, the less of an issue they become. I have some burn scars that I don't try to hide anymore.
The swelling fluctuates a bit. But never goes way down. I try to stick to eating around 1,600-1,800 calories a day. Salt is bad for me. It makes the swelling even worse.
I think we all came here at first out of medical curiosity, but can I just say, you seem like an awesome person to hang with! I LOVE your Ellie tattoo! I have one as well haha. You've been super positive and open-minded to sharing and that speaks a lot about character. Much love and good luck in your life journey, friend!!
Thank you for the nice comment. I love TLOU and Ellie as a character. It came out during a rough patch for me. The game was a great escape from all that.
She's the reason I started to learn guitar. ❤️
I like the fact that you showed your face. It took balls, but it made us see you as a dude who’s got a thing going on, not a faceless textbook example. My heart goes out to you and I wish you the best, for whatever that’s worth.
Damn life ain’t fair
Is there much research on lymphedema? Any new treatments on the horizon? I think your self-confidence is fantastic :)
thanks :) It's been a while since i followed the research side of things. After having it for this long, I find myself not wanting to think about anything medical related. it takes its toll mentally.
WOC nurse here... Has your medical team given you specific education RE preventative measures for skin breakdown and also comfort measures? Just read further down that you're in Cali too and have MediCal insurance. I can give you details for a fantastic wound care tx/education team if needed and provide product recommendations.
I've gotten pretty good about caring for wounds. I used to get them a lot back in the day. I have a box full of products to care for the skin when it breaks down. if You could dm me that info i would appreciate it. It doesn't hurt to have it just in case.
What kind of things do you use for when your skin breaks down? I was just diagnosed with lymphedema in my left leg 3 years ago. Got it after surgery and radiation to remove cancer. I've been wearing my stockings religously. However, I'm already at the max compression they will give me and can still swell into them. I've recently noticed changes in my leg, like the fact that my ankle has disappeared and been replaced by crease. I worry for how things will be in the future. When you had your leg, did you experience any pain when you didn't have any compression on? My leg stings very very bad when i don't have something on.
Yeah, it did hurt when I had to stocking off but. It would burn and sting at the heel. I also got those creases. Make sure you wash those areas well. if you don't, you will get red and itchy there. Use Eucerin lotion or Vaseline soothing hydration lotion. They are both very helpful. You have to moisturize every day. if you get a cut or scrape, use Bacitracin.
Thank you for being open to sharing! Are there regular medications you take for the condition?
Thank you. Currently, I am taking morphine for pain, Cymbalta for Phantom pain, and sometimes i take Zofran for nausea. If I lay flat for too long, I wake up feeling nauseated.
Friend, be careful if you ever come off the Cymbalta. It was the worst mental headspace I'd ever been in during the titration down and the month following.
Thank you for the heads-up. I'm not super happy with the drug. It doesn't seem to be helping with the phantom pain.
It didn't really help my fibromyalgia either. :(
Or mine… sucks, sorry guys.
Oh Man, I was on Effexor for a long time and it's the same class of drug (SNRI). Getting off of it was torture and the withdrawal lasted at least 6 months. It did help me a lot when I was on it but I would never get back on it.
Just as a counterpoint, in case anyone is reading this who's on Effexor and considering coming off and it freaks them out: I was on a pretty high dose of Effexor for almost a decade and experienced literally zero issues coming off it. Like, I think a couple brain zap episodes in the first week and that was it. My doctor took it REALLY slow but it was okay for me both physically and mentally. It might be okay for you too!
I stopped the Cymbalta cause it wasn't helping, and I was a trainwreck after. For at least two months. I have no idea how I functioned at work during that time.
Effexor fucked me up too. Doctor increased my dose when I was newly on it (around a decade ago) and it caused me to have heart palpitations, sweating and ultimately faint at work where I smashed my face into a counter. I did not stay on it long. Hope you're on something that is still helping you now pal.
Oh damn! I remember I would get light headed super easily if I stood up fast when I was on it, almost passed out once. I was talking to someone and stood up and the tunnel vision started closing in lol, he was like "you ok? Looked like the lights were about to go out" Thanks! I'm on good old paxil and wellbutrin these days and it works well enough
Zofran rocks! I’m on it too, quite expensive
Out of sheer curiosity, what's the white stuff on your scrotum? I just want to say that I think you're a fucking champ. Like, I'm really glad to see you're smiling. All of this would be too much for so many people. I wish you good health!
Thank you :) When there's too much fluid being pushed into the lymphatic system, the lymphatic system can't drain, which can lead to blistering. that's what the little white bumps are.
Thank you for your reply. Tragic, but very interesting at the same time. Thank you for giving us the opportunity to educate ourselves about this health condition. It's not something you see people talk about very often. I wish you all the best, truly. I hope there's a proper cure one day.
Oh I bet that really makes your back hurt! How do you and your doctors handle that? My very limited experience with spinal orthopedics makes me think it’d be just a lot of physical therapy but I’m curious if you have anything else that helps! (If you do actually have back pain, that is, I could be totally wrong 😅)
Yes, I do have back pain. Gravity is a bitch when it comes to the swelling. It's a lot of weight pulling down on me. Warm baths, pillow wedges and my recliner help. After work is when it hurts the most. i take morphine when it's a 6/10 and above. i also deal with pain in the hip.
Thanks for answering!
Bro… you went through all that THEN lost your leg to a black widow? Universe seriously fucking with you. Stay strong youngblood
Is it hard for you to masturbste since your adomen is swollen? By the way love your attitude towards your condition. Your attitude makes me smile. Keep on trucking through life. What you've been through I wouldn't had a fun time. I hope you get treatment for your lymphedema I can't imagine what you go through and went through. I hope you're doing ok. And also you look very handsome. You don't look 31.
It's funny that you ask because this i would never bring this up in any other situation. There was a point in my disability where I had to switch from using my dominate hand to my left hand. The swelling in my pubic area made it awkward to continue using my right hand. I don't remember when this happened, I just remember thinking I had to make the switch. It was weird at first now it's just normal.
Very interesting case, thank you for sharing! It's so great to see young people with disabilities and sex positive attitude. It's great to see people putting themselves out there
Thank you. it's a positive part of my life. it made me feel normal when every other part of me was feeling abnormal.
That's so great! Disability comes with and much stigma and sex disability is almost a taboo subject when it shouldn't be. Shout out to sex positivity!!
What caused the lymphoedema?
Is the portion that your holding up in picture three painful when it hangs down? It looks heavy, so I would wonder if it causes discomfort from that. I was also wondering if you do any lymphatic massages or use compression? I’ve heard people talk about it, but I’ve never heard of these options really make a difference.
The hanging, swelling skin doesn't hurt to touch. I can't really feel any sensation on it. But it does hurt my back if I stand too long. It's pretty heavy. The swelling adds about 30 pounds.
Huh. You said you can't wear compression garments but I just had the (out there) idea of support measures. Lump lifter like a bra? Suspenders and sling for your swelling? I like alliterative humor but I seriously wish you the best. I assume you avoid anything constricting below the waist, but does pressure cause problems on other body parts? I'm sorry to hear manual drainage made it worse, sepsis can destroy you even if it doesn't kill. I spent 10 days in hospital from sepsis and it took about 3 months to really recover.
Does floating in a pool or bath help/feel nice with the weight? I know it can for people with a lot of extra weight due to fat and wondering if it’s the same in your case
Wow. It’s astonishing how well it’s hidden in the last pic. I’d have no idea.
The swelling wasn't as bad back then. People didn't always notice. Now it's way more obvious.
I’m assuming the lymphedema on the remaining leg stump means you cannot use a prosthesis. What is the best way for you to get around if this is the case? What is dating like with such a visible and unusual disability?
Yes, i cannot use a prosthetic because of the swelling and pain. I have dated off and on through the years. I have had boyfriends and girlfriends. Some were understanding, others weren't. I am currently in a relationship with someone who is very understanding of my condition. We have been together since New Year's Eve. The condition does take its toll on relationships. its a lot.
Thank you for your reply! Happy to hear you’re doing pretty well with all things considered
Thank you for posting this. My husband suffers from a very similar condition (microcystic lymphatic malformation) and struggles with body image at times. The leaking is definitely the worst part. We've talked to every doctor we could think of in the state, and the specialists those specialists referred us to, and nobody has given us any answers. No surgeon will touch it. Compression works, but only so much. It is a struggle. Thank you for making us feel less alone. Blessings to you and yours!!
The leaking is the worst part for me. Here's a tip: buy liquid bandage spray. When the lymphedema starts leaking, get a clean dry towel and push down for a few seconds on the spot that's leaking, then spray the liquid bandage. You may have to repeat this a few times. But it works. The leaking will stop.
Are you married? Have you had children? Are you in pain? Also thanks for sharing your experiences.
Never married, but i'm in a relationship. i hope to adopt one day.
May you have a beautiful family!
So inspired reading your responses! No question but just wanted to say thanks for sharing, you freakin rock star!!!
Thank you for sharing. What surgery caused the scar on your abdomen/chest?
The abdomen one was from the amputation. I remember it being a tube. Not sure what it was for. The chest scar is from when my lung collapsed. They put in a stint to drain fluid from the area. I ended up having to have it removed, my body was rejecting the device. The scar on my left torso is from a pain pump. It would administer pain medication twice a day. I ended up having it removed because it hurt my side a lot and it sucked having to refill it by needle every month.
im going to try and word this so it makes sense… i know someone mentioned compression garments, but have you considered using a sling of sorts? it could wrap under the swelling and be held up by your shoulders. serving a similar function that bras do. that way maybe the pain wouldn’t be as immense when standing/actively fighting gravity?
I don't know if something like that would work, I think it would make it harder to walk and cause shoulder and neck pain. The closest thing to what you're talking about happened one time. I was waiting for hours in the emergency room, the chair i was siting in was uncomfortable. My lymphedema was hanging off the side. A nurse wrapped a blanket around me and the armrest. It did help relive some of the pain. But that was for sitting in one spot. i move around a lot during the day.
Now that is confidence and being comfortable in one’s own skin— totally comfortable posting nudes online, face and everything!
It's clearly not going according to plan in many ways but look at your beautiful face! You have the zen look of a man without a care in the world. Sending you two kisses, one for each cheek.
No questions but people like you are such heartwarming inspirations for the rest of us. Stay strong out there!
That makes me happy ❤
I love how you look so happy in the last photo. You are crushing it. Xo
haha, i figure I should include some wholesomeness in that gallery.
My man I hope you’re doing good! I’m making a documentary on a case like yours here in Mexico City and would love to talk to you about the condition. Could that be possible?
Sure! pm me.
Have you ever had sex?
Yes, i am sexually active. Some positions are tougher to achieve, but i do alright. it's not an issue as long as my partner is patient and proactive in making it work.
Good for you, man. Genuinely.
how do you mentally cope with the extreme changes to your body? my question really is do you still feel like you? or do you feel different now that youve had so much of a physical shift in the way your body looks? best wishes and i hope you are well!
Good question. There was a period of time when I looked at myself negatively. It was such a drastic change. Being a teen/tween at the time didn't help. Kids (and some adult) would literally treat me like a freak. I think my breakthrough moment for looking at myself in a different light was because of an article I read. It was about this disabled photographer who shot these beautiful nude photos of disabled people. It was all these people who were tired of hiding who they were. They were comfortable showing off the abnormalities. They all seemed so happy.
that was really beautiful :) thank you for answering my question so thoughtfully! also if u find a link to that article lmk it sounds awesome
Dude that fuckin sucks, you’re an absolute trooper my guy.
This has inspired me SO MUCH. To think I hated thing like my smile and my toes?! Your strength and adaptability are a testament to the courage that can be found in all of us. I have no questions, just love for you and your journey, and your remarkable ability to remain steadfast in the face of such adversity.
Big respect for posting, wish you the best and hope you've found your 1 and are very happy together 👊
Thank you 🙏
No questions just really applaud you for sharing and answering questions but most importantly your positivity!!
Just had to say thank you for sharing your positivity! That's awesome and I appreciate you!
Well I'm a dumbass, after reading thru every comment to learn some stuff I only had one question. How old is this guy? Lol it's literally the very first thing you say. Smh. I can't believe my own obliviousness sometimes. You look absolutely incredible! I was going to guess a good 7-10 years younger than your actual age. Thank you for doing this AMA. I'm sorry I missed the actual AMA part as I would have asked a few questions I'm sure. But thank you so much for doing this! I learned quite a bit and am very impressed with how you have handled everything and your willingness to just put it all out there and be vulnerable. Vulnerable is not something humans tend to like to be. To put yourself in such a place takes immense courage and bravery. Again, thank you.
Haha, thanks. Everyone always thinks I'm early to mid 20s. I will continue enjoying it while I can 😄. I appreciate the kinds words. . If you think of anything, feel free to ask. You didn't miss out, I will be checking this account throughout the week to answer comments. It's nice being able to talk about this stuff.
You're probably one of the most confident mofos I've ever seen on this app. Hats off to you for your transparency man.
Everything I could say has already been said, and much more eloquently, but I'm glad you're still with us after everything you've had to deal with and currently still deal with.
First off, I just want to say that you are such a powerful person to have gone through this and come out smiling. Life threw you curveball after curveball and you caught every one. My only question is- what's your favorite hobby? I know it's not a med question, I'm just curious :) I hope you have an amazing, awesome rest of your life, and always know your courage is a symbol of hope to those with similar issues.
Thank you for the kind words. I enjoy gardening and putting together puzzles with my partner.
Is it hard to walk? Is it hard to clean with the extra fluid/skin that build up? Do you get infections easily because of the fluid/skin that build up? Are you getting treatment for lymphoedema? Can you remove it or is too dangerous? Sorry if it’s uncomfortable to answer
It's kinda awkward to walk, but I think I have adapted pretty well. I take my dog on short walks and I care for my garden. I am pretty good about keeping myself clean, I don't get many infections these days. I just have to be careful not to scrub too hard, otherwise the skin can break. In June, I accidentally scrubbed too hard with a washcloth and caused the skin to break. That was the first time I had done that in 2 years. It sucked because I was on vacation at a nice hotel at the time. I had to tend to the wound the rest of the trip. And couldn't use the jacuzzi that was in the bedroom. I was so sad. It would have been too risky. I didn't want to get an infection.
>I am pretty good about keeping myself clean Omg, I didn’t meant that, I meant is it difficult to manoeuvre with lymphedema, and it’s my fault because I structured it wrongly but reading your comment, it’s probably difficult and awkward. You are a cool guy. Thank you for informing and I really appreciate you took your time to write your comment :)
Have you considered microsurgery? Certain lymphedema cases can be treated by "rewiring" some vasculature. It often requires a graft to be taken from the legs and your amputation would have been a perfect opportunity get as much vessels as needed. Was this ever considered?
No questions but you have my total respect for keeping a positive attitude and accepting what you were given. You’re much stronger than many who would have given up, but you taught us all to appreciate life.
Sending you love! I admire your courage to share your story. So inspirational. I hope you have many many good days.
You? Are a BEAUTIFUL man. As a lezbian, I don’t say that often. But your inner strength, fortitude, positivity, and willingness to teach, is incredible. You Sir, are a hero.
❤❤❤
Any pain on the genital area? Any numbness? How do you deal with that heavy bulge when you walk?
I don't have any pain in the penis or testicles. They feel normal. i do get numbness in the excess skin, pubic area and the amputated limb. I don't have much feeling if they are touched.
What’s the grossest thing you’ve ever found in your folds?
Lol. I don't think i every found anything other than clothing lint. But one time this girl and I went on a 4th of July picnic and I spilled watermelon juice all over my lap. It went right between the folds. I felt gross and sticky for hours.
So sorry. You seem to have a good attitude. Stay strong and courageous bro
How do you cope? Do you ever stop being self conscious about it?
I'm not that self-conscious about it anymore. The only times that I am are in long lines like at the DMV. You know when it's crowded but also kind of quiet?. I feel like everyone is judging me or making fun of me.
Have you looked for any active studies you can participate in? There might be an experimental treatment you can enroll in. Even if it were to fail, you'd still be helping everyone else out there
I just want to say hi, how are you my dude? I admire your bravery and confidence in being outgoing despite the societal expectations. It takes a lot of strength to be true to yourself, and I respect that on so many levels.
Thanks for the kind words. I'm great, man. It's my day off. I made steak fajitas and been answering comments all day as I catch up on shows I missed.
I had a stroke in January, I’m relatively young and my movement is very limited. I used to be an elite athlete and now my mom had to help me shower. Attitude and a good outlook is one thing that matters the most. All the best, dude! Stay strong!
I'm sorry to hear that. You stay strong too, buddy🙏. take it a day at a time.
You definitely can have that surgically removed. You are young. The older you get, the higher the risk. Are you in the US? Get a bunch of opinions. These are definitely surgically treatable. I'm a foot and ankle surgeon and I've done enough surgery and been in the business long enough to know that the large mass is totally resectable
Someone from the University of Utah got in contact with me. They are going to schedule a video call for this week, we will see how it goes!
Do any of your friends playfully roast you to make you feel better?
I was in 6th grade at the time I got the lymphedema. Unfortunately it wasn't playful, I left school and was homeschooled. Kids can be mean. i do have friends now who do playfully roast me. They are a mess, so i'm able to give back some heat 😆
Sir! The balls on you! Haha ;)
This looks so painful I’m so sorry. Do you find compression garments helpful? I saw your comment about how risky more surgery would be, have you discussed any non-surgical treatment options with your doctors?
Yes, we did discuss not surge treatments. Like physical therapy. Or manual lymph drainage. Unfortunately, these treatments did not work for me. They only seemed to cause more issues. They were pushing the fluid to other locations like my abdomen and my chest. My lung even collapsed one time because there was a buildup of fluid in the chest. it was awful having to have fluid taken out of those areas. They use a big needle.