Feeling lost and alone
I have just been diagnosed with lyphodema. Apparently my lymphnoids got compromised during one of many surgeries. I already was told I needed both hips replaced. But told they wouldn't do the surgery because of weight. And that I would eventually lose my ability to walk because of my hips. Well they were right I can't hardly walk and now the lymphodema! It's incurable and I have to have my legs wrapped to get the lymphatic fluids to drain that's caught in my tissue. I can't get family to understand the issues I'm having with all this. I have always been active and independent even being a larger person. I was always the one everyone called when they needed help. Yet was always the last one they called about a family get together or for anything besides work. Now I can't get them to understand I can't even bend over or touch my feet. I'm in constant pain and need help but they all think oh she can handle it. I get told they are busy for this reason or that reason and can't help me. My husband is a whole other story, I am suppose to be getting a light message to help the fluids drain. He went with me to the doctor they showed him how to do it. But he refuses to do it now. He has an aversion to me I think. I have no one to help me and I have missed therapy appointments on my legs because I can't get there on time getting ready by myself. They all know this but don't offer to help. I can't clean my house, husband tries to pick up stuff but not to good at it. I've always taken care of everything. I have 4 sisters but not one offered to help I had to pay my sister to help me with my house. She came and was gone in about 1 1/2 hrs and I have a large house. I'm beginning to think it's all just about done for me. I have no life and it just keeps getting worse. I never leave the house except to go to doctors and I take myself to do that. The pain is so bad that I am exhausted after. But no one come to see me or stops by. I don't see anyone for days except husband and he is ingrossed in tv when he is home. Is there any reason to continue to fight for my health? Doctors won't help. Why should I fight it any more. Just ready to give up.
@Lost2214 - I'm so sorry that you are struggling this much and your family isn't being more supportive of you. You deserve better from them.
It sounds like you are missing both emotional and, for lack of a better word, logistical support. For the emotional support, do you feel like it is possible for them to understand and it's worth trying to get them there, or like they never will? Do you feel like there is emotional support elsewhere, be it on here, in support groups, from friends, etc.?
For the logistical side - things like cleaning, the massage, rides to and from treatment, etc., are you in a financial position to be able to get help with some of those? Does the hospital have any recommendations for help with things like the rides? Would an in-home nurse every so often be helpful?
You have been so strong to this point and I would hate for you to give it all up because your family hasn't been there for you. I want to see you get that support and that care that you need and that you deserve. Sending you hope and hugs
@Anomalia thank you for your message. It's been the same with family all my life. So its no use trying to get them to understand or care enough to want to help. I've had 34 operations and have recovered on my own from each with limited to no help. This illness will be no different. I have almost gotten to the point that i just can't handle all of this any more. I need hip surgery and hernia surgery and they won't do them. Now I have this lymphodema stuff and it just the icing on the cake to a life that's been a struggle. I've always believed that the lord would see me through and I would get better and he has. But now I'm not getting better nor do I know if I will get better ever. I can't even dress myself any more. I'm just tired of the pain and lonleyness. And the quality of my life is zero. I'm trying to convince myself that there is a reason to keep trying.
I have nobody. People avoid me and I get a lot of disgusted looks
@Sunsetsarebeautiful I'm so sorry your having a hard time. People can be cruel and it's just not right. But if it helps you are not alone.
Thank you for your support. My father has lung cancer and is going through a lot. So we are focused on him. I'm just on my own as far as my family is concerned. They are not willing or able to help with anything. As far as financially able to get help, I'm not. I have been basically disabled for about 17yrs but things are getting worse. I need my hips replaced but they won't fix them, I had a hernia surgery about 10yrs ago and the mesh is migrated in a way that limits my movement and now have a huge hernia from my breast bone to my belly button but they won't do anything about it. They won't do anything for my hips that have been bone on bone for so long the ball that goes in the hip socket is almost gone, because I'm a big girl. And they said the risk factor is to high. I have survived 34 operations and now they told me they can't do anything until I lose weight. When I asked how do I do that when I can't move around. They said that it's s catch 22. That I would need to figure it out. I even filed for social security when I first became disabled and was turned down and again on appeal. When I tried to file again, I was Then told I wasn't eligible for it because it had been so long since I worked. Uugghh! So needless to say