Connect
← Return to Livedoid vasculopathy
Discussion
Comment receiving replies
@aimeenc, please accept my belated welcome. I think other members with LV like @cwhorton @msmerry @zenk @patientrea @cleverrover @merrycat will empathize with your statement "I've really been struggling lately & my family just doesn't understand at all what I go through on a daily basis."
You sure have been proactive in forming a team of specialists to be on YOUR team. Good for you.
For your question about Medicare covering a wheelchair or scooter, I suggest callling Medicare directly or getting help from a social worker to navigate the insurance maze.
I'm so sorry to hear that your husband, your rock, and his support is waning. It sounds like both of you had high hopes that LV would get better and normal life would return. Reality may have different plans and acceptance is really hard -- for both of you. Might he be willing to seek counselling with you from a social worker or qualified marriage counsellor?
Replies to "@aimeenc, please accept my belated welcome. I think other members with LV like @cwhorton @msmerry @zenk..."
Connect
Hi Aimeenc
I am so sorry that I did not see your post sooner. I know just how you feel as those around me just don't understand nor do they 'get' that there is no cure! I have been in another nasty outbreak since COVID hit and painful doesn't even touch how raw this can be.
I got out my crutches to help me shift the weight off my feet so I could try and stand for more than 30 min. Helped a little but this one is just not letting go. I was put on Pentoxifylline years ago after I was diagnosed. I did finally see the ulcers close but they came back hard and fast.
There is no way to tell it other than by just being there for each other and reaching out with hugs and understanding of what each other is dealing with. Being alone and lonely in this disease is really hard so we need each other more than ever.
I hope you are doing a bit better now. I am still not but hopeful...okay lying...frustrated that I seem to be going backwards! 🙂 Please reach out if you feel like chatting or need a hug. Not far away...
MerryC7