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RoxFox

631d

I got a hip replacement just a month ago. I was never told how much my life was going to change permanently. I knew it would, just not to the extent that it really has. I'm only 28. All my remaining hopes and dreams just got steamrolled. I have been crying all afternoon and night. I wanted a lot, but I would cut a lot out given that I could just have some things back. I never got a chance to enjoy my life because of the way Lupus hit me at such a young age, it just continued to cause incurable diseases back to back without giving me a chance. They say you can't miss what you never had but it's not true. I am miserable. is there anything that can be done? Am I really only ever going to walk again as a physical activity? This all happened because they refused to drill holes when the avascular necrosis appeared 10 years ago and the doctors have no idea how much they robbed me of.

Top reply
    • AriaV

      578d

      I was diagnosed with lupus at 23 years old. The career I had in business ended when I went on disability. Because of long term prednisone treatment, I have AVN in my hip, shoulder, and now my knees. Over the last 34 years, I have learned to not let lupus and my other illnesses steal my peace or my joy. I walk as much as I can, I read a lot and write, take care of my home, spend time with my husband and my cat. We love to travel and look forward to going somewhere in 2023. It took depression, surgeries, and having thyroid cancer this past June to make me realize that I cannot and will not let lupus control my life. Yes, there are days when I am down and don't do much of anything. On my good days I take full advantage and do as much as my body allows. I pace myself, take breaks between activities, and on hot days like today I do indoor walking with YouTube videos. The beauty of is that I can hit pause and rest a bit. I share this because I want you all to know that there is hope. Learn all you can about lupus, partner with your doctor in your care, and keep lupus awareness alive. I highly recommend The Lupus Encyclopedia by Dr. Donald Thomas. You can download for free or buy it online. Take good care everyone.

    • AriaV

      578d

      I was diagnosed with lupus at 23 years old. The career I had in business ended when I went on disability. Because of long term prednisone treatment, I have AVN in my hip, shoulder, and now my knees. Over the last 34 years, I have learned to not let lupus and my other illnesses steal my peace or my joy. I walk as much as I can, I read a lot and write, take care of my home, spend time with my husband and my cat. We love to travel and look forward to going somewhere in 2023. It took depression, surgeries, and having thyroid cancer this past June to make me realize that I cannot and will not let lupus control my life. Yes, there are days when I am down and don't do much of anything. On my good days I take full advantage and do as much as my body allows. I pace myself, take breaks between activities, and on hot days like today I do indoor walking with YouTube videos. The beauty of is that I can hit pause and rest a bit. I share this because I want you all to know that there is hope. Learn all you can about lupus, partner with your doctor in your care, and keep lupus awareness alive. I highly recommend The Lupus Encyclopedia by Dr. Donald Thomas. You can download for free or buy it online. Take good care everyone.

    • Nikki8822

      623d

      Thank you all for your responses and advices. I'm sorry to hear about those of you with the bad experiences. I think God because it Him who has helped me tremendously through all my tribulation and also I have an amazing support system and team of doctors.

    • VariaMoon

      625d

      Huge hugs!!!!!!!!!!! Your amazing!!!!!!

    • Nikki8822

      627d

      Hello 34 here, my AVN is steriod induced as well from a Liver Transplant 12 years ago. I had my left hip replaced last year it had totally collapsed, I need my right done but it isn't that bad. However in a month I will have my left shoulder replaced because it just advanced and started giving me excursating pain in January of this year after being silent for about 3 years. The only cure is to get them replaced so demand a replacement for a better quality of life. Since my hip replacement last year it is so much better than before.

      • RoxFox

        625d

        @Nikki8822 Yowza. You're a trooper! My hip didn't totally collapse until the surgery itself. I had no idea why it was so hard for me to move my leg in physical therapy and neither did the physical therapists because my doctor failed to tell me that part! I wonder if it's easier to move if it doesn't collapse first. ❤️Good luck on your surgery!

      • VariaMoon

        626d

        @Nikki8822 I had my gallbladder out last year and I’m STILL not back to my “normal” I don’t want replacements at all! That’s 2-3 YEARS of my life gone and in way more suffering than I have now (I have no help or support) hate surgery with a passion especially after last years abuse from my “caregiver” who my ex and a miserable pos. Glad it’s working for u. But I don’t want anymore had 3 avn surgeries already . Blah!!

        • RoxFox

          625d

          @VariaMoon from what I learned about certain organs, getting them replaced is definitely a much longer healing process and not everyone fully improves from it but there may be something that can be done to help even if it doesn't seem possible. At least try talking to your doctor about it and see your options before giving up! Ik a lot of essential workers can be pos unfortunately. Bad people look for "easy" jobs with good pay. They see an opportunity that won't cost them years of school and they take it. When I was recovering in the hospital I got pinned down to get blood drawn when I said they couldn't keep poking me after failing to get any of my good veins, and I was all bruised up hands and arms and a part of my leg that they went for as well. They kept going for the same veins and later on I found out they weren't even supposed to do that, much less have several nurses come in to hold me down when I directly denied them. After that, one of the nurses had it out with me and when they put a catheter in me, she waited until the nurse who did it was gone and jammed it in deeper. I still experience the pain from it and I was helpless because I couldn't get up with freshly done hip surgery. Every night after that I cried and begged my mom to take me home because I didn't trust anyone anymore. From then on all a nurse would have to do was be slightly frustrated or negligant for me to lose my shit. There are way too many shitty people out there.

    • VariaMoon

      627d

      I’m so sorry. AVN is the worst!!! I have it is all 8 major joints and a lot of other places too mine was Steroid induced from what they put me on from the Crohn’s disease. Lost two years to a wheelchair when the hips started dying. Got out of the chair and have not had replacements yet (don’t want them)Look into cannabis CBD especially the CBD is what controls the inflammation and that is one of the main problems with AVN. Best of luck!!

      • RoxFox

        627d

        @VariaMoon same here!! It was steroids for my lupus. I went to what they called the best hospital there was for it but instead of doing what I needed, they refused all the proper treatments the other kids were getting and chose me to be their lab rat and see how much worse it could get with just steroids. I hope they go out of business for being the biggest kind of pos. To be able to look into a small child's eyes and say the other kids can get the treatment because they are severe but you can't even though you're being hospitalized weekly and told you may not live to see adulthood and the best they were able to say is I'm so sorry but until then we will make you comfortable. They even took 20 large tubes of blood from me every week. I became anemic too. Seriously someone just shit in their lunch please. Ugh... but I digress. I have tried CBD! I used to use it a lot until eventually my jacked up stomach couldn't handle it anymore. I have really bad acid reflux, mini ulcers and the walls of my stomach are raw so my body just rejects it. I have other herbal anti inflammatory choices but my lupus forbids me getting rid of my swelling. :\

        • VariaMoon

          626d

          @RoxFox I’m SO sorry!!! Huge hugs!!!! I’ve got lots going on too and no family or friends /no support. I qualify for euthanasia in the Netherlands today and I’m pretty sure in about 10 to 15 years that’s gonna be my option because I can’t do this anymore.. just got a new dog (so her lifespan and I’m out unless a miracle happens) so fun!! Hugs

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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