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Hi, Rich. I’ve had three surgeries on this right hip now. I haven’t made a video describing the third one, but I will. It was a hip flexer release, which you really should try to avoid as much as possible on us EDSers because that provides stability, but mine was a mess. The second surgery, where my labrum was replaced with a cadaver one, was a huge help. It would have just kept tearing. I’m so glad you wrote to me because I was literally just talking to my son about starting to make videos again and what I want this channel to be. Luckily, I have figured it out. If there’s anything specific you would like me to talk about, please let me know.

@@mollyhillpaperzebra6775 Hi I'm really sorry it took me 3 months to get back with you lol. Most of the issues I'm dealing with are in my neck and back but I am also having some issues with the patellar tendon in my knees

@@mollyhillpaperzebra6775 I connected with your sister on her channel too lol. I'm in Michigan and have a wife and 3 kids and I'm trying to figure all this out.

@@richhunt7662 Hi, Rich. I think you're referring to Lisa from Light Between the Stripes. She's not my sister, but I'm so flattered that you thought that. She is a wonderful woman. We met on here when she left a comment on one of my videos years ago. We have stayed in touch ever since. I hope you are feeling ok and that 2022 is the year that you figure a lot of this stuff out.

Hi, Rich. I just wrote on your other comment. Thank you so much for writing to me. I am going to be making videos again soon and I will update everyone on my surgeries and how everything is going now. I just passed the two year mark on my last hip surgery, which I explained in the other comment I left you, a hip flexor release. That’s usually a no-no in our world, but my goodness, it helped me so much. That caused me so much pain and would swell so much sometimes that I couldn’t bend. My husband would have to dress me from the waist down. I still have pain in the joint, the groin line, and ligament pain on the outside, but I pay attention to it as much as I can. Activity ticks it off, of course, so I try to be careful how I move, so I don’t sublux, and rest when I need to. Ice is my best friend. It’s manageable for now. That’s where we are. I’ll take it. I’m guessing you’re asking me this because you’re having similar hip issues and maybe questioning surgery? I will definitely do a video about surgery and when and if you should have it. In case that’s where you are, my rule of thumb on surgery is there will come a time when you can’t stand it for one more day, let alone one more week or month. We will always live with pain. When we have injuries with debilitating pain, that’s different from our chronic pain and that’s what we have to get our doctors to understand. And some of our chronic pain can be and needs to be fixed with surgery. When I was about to have my first hip surgery for the labrum tear, my surgeon said he wanted me to understand that this wasn’t a permanent fix, that I would most likely tear again. I said that I would rather have this surgery every year than have to go through this pain for one more day. He said ok, just wanted to know what my expectations were. I tore a year and a half later. Thank you so much for writing to me, Rich. Let me know if there’s anything you would like me to talk about. Take care.

You’ve got to be kidding me! I just read and replied to your comment on the speech video and I thought that was a ton of things to have in common. Now this, too??!!! Amazing! We were meant to meet, Kerri.

Kerri, first of all, thank you so much for watching this. I’m tearing up for so many reasons. To hear that you’ve gone through so much pain and disappointing results and answers breaks my heart. I’m a bit of an empath, so a lot of the time, I can actually feel what other people feel. And since we’ve gone through so many of the same things, I can definitely feel what you’ve gone through. That also brings happy tears to my eyes, though, because now you know you’re not alone. You have a new friend out there that totally gets it and can be there for you. And I have I new friend that understands what it’s like to go through so much, especially with the pregnancies. That’s crazy!!! The best thing is seeing you say that you know you are not alone. That’s my whole goal. I’m here. You can email me, if you like and keep watching and talking with me because I have more on the way. Thanks again, Kerri.

Yay! I just left you a comment on the Be Honest video and asked you to watch the speech if you could. I’m so excited. Thanks for watching, Kerri. You’re awesome!

Hi, Kerri. I’m so glad you watched this video. I appreciate you commenting. I’m doing pretty well in 2021. I’ve had another hip surgery since this video. I actually recorded a video yesterday that includes info about it and will post it today. If you can, watch the speech I gave at UMES. It’s all about what it’s really like for us. Thanks again, Kerri. I hope you’re feeling well. If you want, let me know how you’re doing and if there’s anything in particular that you’d like me to talk about. Take care!

Hips suck, don’t they? Hi, Kerri. I just saw your comments on some other videos and I am so happy that you’re here. I’m very sorry that you’re having all of that trouble with your hips. It sucks because they are our home base for our legs, our back, a whole lot of nerves and tissue and organs in that area. But the hip joint itself takes the brunt of so much wear and tear. I’ve had a third surgery since this video and I’ll be talking about it in some new videos, one coming out today. So glad you found me. Let’s find you help for these hips.

Thank you, Lisa! You are a big reason that I finally made this video. Thank you for being such a great friend to me. I am so grateful that we met because of my videos years ago. It makes them that much more meaningful to me. And yes, my hair is silly long. You know how curly it is naturally. Here, I used a really fat curling iron to smooth out the curls a bit and it made it pretty straight. My hands hurt by the end of doing it, though. The price of defrizzed hair!

I know every time I have to get ready and do a video it takes so much of my energy and afterwards I crash! But just like you said you can't stop living so you just have to do what you can do when you can do it! 😉

Thank you, Lisa! What amazing things to say. I'm so happy to here for you in whatever capacity you need me to be, especially as a friend.

Lisa! Hello, sweet friend. Thank you so much. I'm so happy that you liked it and could relate to it. I didn't know you started a channel. I just watched your videos and subscribed. I love listening to you talk. Keep making videos. You're awesome!

Emily Olsen Hi, Emily. I just wrote a pretty detailed response about the surgery a couple of comments down. If there’s anything else you want to know, please ask away. My biological mother, who also has EDS, had a hip replacement a couple months ago. She had it because her arthritis had gotten so terrible. We’re also hoping that it will help tighten up the joint. She’s healing well from it so far. I have more joint issues and she has more gastro problems. Five hip surgeries? That’s a lot to handle. I’m sorry you’ve had to go through so much. Do you have EDS or a different condition? I think a hip replacement will only really help if you have bad arthritis or there’s been so much damage to the ball and that’s the best way to fix it. I have no idea what your situation is, so I can only speak to what I know about my 30 years of dealing with EDS. I really need to start making videos again. It’s been way too long and I know I have advice and support I can offer. Take care. Sending you gentle hugs, Emily.

@@mollyhillpaperzebra6775 I asked what you thought of hip replacement. I have had everything you mentioned by very skilled hip surgeons in Vail Colorado. LOL not asking about pain management stated below. I am looking for those that have had hip issues who have EDS so that we can share information. :) Thanks so much,

Emily Olsen I wish I could give you more information about the hip replacement. The only two people with EDS that I know who’ve had it done are my bio-mom and bio-grandmother. My grandmother has had it done on both hips, the right one 3 or 4 times because she kept dislocating with it. Now, she has never officially been diagnosed, but of course, she has it. We were finally able to tell her last surgeon and he swears it is impossible for her to dislocate from the hip he put in. We’ll see. And it’s been 2.5 months since my bio-mom’s replacement surgery and all is well so far. She wants her other hip done this summer. Like I said before though, her arthritis is really bad. Mine isn’t that bad, yet. I wish you the best of luck finding the info you need.

@@mollyhillpaperzebra6775 wow, thank you so much, I really appreciate this. Really is a family disease....Hope your recovery continues to go well. Blessings Em

L Rumpf Hello. I’m sorry it’s taken me so long to write back to you. I stopped doing videos for a while. Thinking that I really need to start again. My surgery was mostly successful for that specific pain. He put in a cadaver labrum and was able to get my capsule to close this time, where my last doctor wasn’t. He stretched it as much as he could and stapled the hell out of it. I think those were his words to my husband afterwards. Right away, that pinpoint pain where it had torn again, was gone. I was non-weight baring for about 7 weeks because we wanted scar tissue to build up to help make the joint tighter. The tighter the better for someone with EDS. Once I could move around on it, I improved quickly. I felt so much better that I did way too much in physical therapy, tried to help too much around the house, run errands I hadn’t been able to do for ever and by five months post surgery, I thought I tore again. Had an MRI and he assured me I didn’t tear, but I had pissed the hell out of it. Had to do nothing but ice and relax for a little bit to calm it down. It felt better, but I still think, in that one pin point spot, that it’s very stressed, if not torn a tiny bit. My hip isn’t any tighter and I know it will tear again. I just don’t want to speed up the process by being careless and/or stubborn. Think that’s inevitable, though. So yes it helped with that one tear and closing the capsule, but it’s definitely not a permanent fix. Are you trying to decide whether or not to have a similar surgery? I hope you’re doing ok. Please feel free to ask me any more questions.

@@mollyhillpaperzebra6775 hello! I am about to do same surgery with eds. How are you doing today with you hip surgery?

@@SRF-vm3fy Hi. I'm so sorry that you are about to have surgery, but this is the surgery where I got the the cadaver labrum, and if that's what you are having, it helped immensely. That specific pain is gone and it has held. There are times when I thought I may have torn again, but I just pissed off another area badly and had to give it time to calm down. I have had another surgery since this one. In 2019, I had the right hip flexor cut (a hip flexor release) because it was in such horrible shape and caused such sharp, debilitating pain. Normally, you want to avoid that, especially in an EDSer, because the flexor provides stability, but it got to a point where it was ruining my everyday life. I truly hope that this surgery helps you and holds for a long time. Good Luck and thank you for writing. I'm glad you asked me about it. I am going to be making videos again very soon, so please check back. Take care.

Hi, Wendy. What a sweet thing to say. I'm glad you found me, too. I hope you are doing well and enjoying your creative time. I haven't posted in a while, but will start again very soon. My hope is to post one health type video and one creative type video a week. We shall see. My condition is very unpredictable and a trip the the store can lay me up for a couple days. Thank you very much for taking the time to comment. Take Care!

Judy, thank you so much for your reply and for sharing so much of your story. You have really been put through a lot. I'm sorry your illnesses have affected your marriage so much. I read your message to my husband and was so thankful for what you said about him. I am going to get back to making videos in the new year about dealing with illness, art, family, books and writing, and whatever else I feel I can be a source of help and entertainment for people. I hope you will check in and let me know how you're doing. Take care and thanks again for writing. God bless you, too.

Ok, you are awesome. The first thing I see is the hound's beautiful face and I am a huge GOT fan. Then I see the 4 leaf clover. I'm 100% Irish. This is fate. Thank you for watching and commenting. I know it was a rough video, but I was just so excited to post one about NaNoWriMo. Are you participating this year? if yes, good luck!

Thank you so much for watching, Jane! I'm honored. I'm assuming you watched this because of the message that I left on you on Instagram. This is the 2nd video I made about your products. The first one about your book and supplies is the one where I gush about how much I adore you and what you have done to add quality to my life. Again, if you have time, please watch that so you can see what you do for people beyond giving them beautiful art supplies and lessons. I got butterflies when I saw your name. Thanks again for taking the time. I appreciate it more than you'll ever know.

Fables 456, thank you so much for watching and for taking the time to comment. I'm sorry to hear how your pain is increasing and effecting your life so much. It sucks! Sometimes that's all you can say. As far as getting diagnosed goes, it's important so you really know what your dealing with and to help doctor's take you more seriously and for peace of mind. No more wondering about what you really have. And, if there comes a time when you do need to apply for disability, you need the diagnosis. To answer your question, you will know when it's time to apply. I'll make another video about this and more advice. You'll know it's time when it is effecting your everyday life so much that you can't perform your duties at work and at home. When you get to a point where you're having to call out, leave early, ask others for help several times a week, can't perform your responsibilities... you're probably there. But remember what I said in the video, it has to be when you can't think of any type of job that your body could handle. I know one of the main reasons I got disability was because I waited until I had tried so many doctors, therapies, job types. It wasn't as soon as I had to stop teaching. I would've been denied if I tried that. I proved I was willing to try everything I could think of before applying. You will know when you can't handle going to work anymore. It's very hard to accept and it won't be easy, but you will know. I promise to make more videos on this. I know how important it is to help people with this and all aspects of having EDS and any chronic condition. If you haven't already, watch my video called "Be Honest". There's a lot of advice about how to get diagnosed. Good luck to you and please let me know how you're doing. Thanks again for commenting.

Fables 456 Hello. I’m so sorry for not responding for so long. I haven’t been making videos for a long time. I need to get back to it because I really do have so much to share from my experiences. If it can help some people, I need to do it. I’m very sorry you had such a bad experience with your surgery. That just sucks. Sometimes there’s simply nothing else to say. Have you found anything that helps with your chronic pain yet? We need people to understand that what may help a little bit changes all the time. What helped yesterday might not work today. What helped your back today might not help your hip tomorrow. You know what I mean? I really do wish you relief and comfort and relaxation. Take care and gentle hugs.

Kateri, what a wonderful comment. Thank you very much for taking the time to tell me about yourself and some of your friends. Of course I will check out their channels. I love James Burke, too. I've been following him for a while now. His drawing skills amaze me. He makes it all look so easy. And his attitude about being creative and towards life is very comforting. I am so happy that you found my video inspiring. That's the whole point. I haven't posted in a few months, but will get back to it now that my sons are back in school. Shew! I hope you check back in from time to time. Thanks again and take care.

Cheryl turtlemoon Thank you, Cheryl. I appreciate that. I actually haven't done a video in a little while and your comment just got me excited about doing one. So thank you for that. Take care.

Hi, Deserie. Thank you so much for commenting. I appreciate it. I have bought more supplies recently. Need to do another haul video. Have fun with your art supplies. They are addicting, aren't they? Take care.

Lisa, I wish I could call you and wish you good luck for tomorrow. I know exactly what you're about to go through. Best advice I can give is don't try to do too much too early. Let your scar tissue build up to help hold things a bit more stable. I'm actually afraid I have pulled/tore through one of my many anchors. Having that very specific pain in a very specific spot. I did too much myself when my husband was away. At least I know the labrum itself didn't tear again because it's a cadaver labrum. But I am so upset. Hoping it all just needs to calm down and I haven't really given it a chance to. Please let people help you as much as possible and let me know how you're doing when you are up to it. We should talk. Maybe we can figure out some things to help with your disability case. I can't believe you have gone threw this for 5 years. That's absurd. Good luck, Lisa. I will be thinking about you!

Hello, B D. I'm so sorry that I didn't see this comment years ago. Thank you so much for what you said. I really hope that you are still on here and will see this because I'm back. I just posted a speech that I gave and, if you liked this video, you will love this speech. It is full of info about what our lives are really like living with EDS. I hope you are doing well and staying healthy. Thanks again for taking the time to write a comment.

Hi, Lisa. Thank you for watching and commenting. I would love to offer as much help as I can. It is a very involved, tiring process. I have wanted to do a video on this for a while, so I will film it tomorrow (3/14) and hopefully post it, too. Right away, the best advice I can give is to write down every little thing you can think of about how your disability affects your daily life. Keep a small notepad with you all the time so when something happens or comes to mind, you don't have to rely on your memory. For example, there is a section in the paperwork that asks what you need help with in the kitchen, bathing, driving, shopping, etc... I put things like I have to wait until my husband comes home before I can cook (if I can cook that day) because I can't always hold the pots and pans, like when making spaghetti, I may not be able to drain the water. I also put things like I sometimes need help dressing because I can't always button my clothes or bend over to put my socks and shoes on. Even said I can't reach the toilet paper if my neck is in spasm. Be as specific as you can. Even if it seems silly or insignificant, write down anything that you may have trouble doing because of your body. I really will try to get the video up tomorrow because I know it is so important for so many people. I hope that helps a little bit. Take care, Lisa. Gentle hugs!

Hello. Thank you so much for commenting. I'm so sorry your battling cancer. I have depression, also. I will be doing videos on that, so I hope you will check back in and tell me what you think. Have fun in your craft room. You need a place to escape and have fun. I hope you are having a good day today. Thanks again.

Marta, thank you so much! The fact that you watched this after I mentioned it to you in a comment on Instagram a little while ago shows how amazing your character is. Now you understand just how important and valuable your videos are to me. You have made my day!

Crystal, I agree with all that you said. Thank you for sharing so much about yourself. I have flares all the time. Weather, activity level, how long I sit/stand/walk/etc..., and my mood affect my physical pain every day. Fatigue is a huge issue. I don't sleep well because I wake up every time I need to change position (can't stay in any one position too long). I am so happy for you that you that you were able to work hard and get out of bed. That takes so much strength. Thank you for watching and commenting. I appreciate you taking the time.

Hi, Marsha. Thank you so much for commenting. You're right. People don't realize all that EDS does to us. That's exactly why I started making videos, to tell the truth of what it's really like so their family and friends can understand and so people don't feel alone. Please watch my intro video and the one called "Be Honest" and tell me what you think. I know you can share some good wisdom on how to get through all this fun EDS stuff. Art is so healing and helpful. I want to post a lot of art videos, too. Take care!

Hi, Debbie. I just replied to your comment on my other video. I am so sorry you had to have the PAO surgery. Wait... on BOTH sides? That's awful. My doc thought I needed it at 2 separate times. Thankfully, he sent me to an expert and he said (both times) that I don't need that one. Not yet, anyway. I am just hoping to get many years out of this new labrum. At least a few years. How are your hips doing now? I hope it's brought you some relief and independence. Take care and sending you gentle hugs.

These are back when I had first one done. And femur lengthened. This hip I never think about. The other hip not as successful as something is catching on the bone, a tear and maybe arthritis too. Hoping a scope fixes it though _lh3.googleusercontent.com/qaxDU9QcgbgXAOfRg6Bv6Wk0_DRXvfo81rlT_iDyLHUyyztUHHlAmjfaafocfd-ssBfr3FliWWM_

I tried the link and it said error. Still can't believe you had to have both hips done. I texted my husband right away and he pictured you with both done at the same time, strung up in some traction unit. I hope scope helps it, too. You're a trooper!

It was just an image of my hips, you can find them on instagram .com/sirenmoonbee I know some do it at the same time, I could not, not a chance. Hugs

Hi, Debbie. Thank you for commenting. I hope your surgeries have been helpful and last for a long time. EDS is so much fun, isn't it? I've always told my husband that there will never be a dull moment with me. Take care.

I like your spirit, eds is not fun. Hippie hugs xx

Hi, Veronica. Thank you for writing me. I appreciate you subscribing. Once the holidays are over (and the kids are back in school), I will be posting crafting videos on a regular basis. Put that junk mail to good use. Have you watched any videos by Maremi SmallArt? She has wonderful videos about using packaging for mixed media art journaling and series on adding texture and how to break through the blank page. Plus, she's adorable. Check her out if you haven't already. Merry Christmas! And thanks again for subscribing. I'll check out your channel as well. Take care.