My Husband, My Life, My Love, My Family, My Cancer

@goldensrbest Yikes your back procedure sounds as sacarey asI felt about my radio frequency ablation in my cervical spine facets in my neck vertebrae. They burned 8 nerves which is supposed to relive the pain for about a year or when the nerves grow back and I start back up with the pain ..

@mara51506 your black bean meal sounds interesting.🤔 quick question, how do you make your crispy lentils?

@intolight I hope you had a wonderful birthday lunch 🥰

@micmel I’m happy to see you and glad Gabby is doing so well as a BC trooper. glad chemo is over for her.

so I just wanted to share with you what I was shring over on the bone met thread. I copied it andwas wondering if anyone heard of this disease.

Today I didn’t do much of anything but sit on the couch in our livingroom where I usually watch the fish in our fish tank. I had my IPad and texted back and forth with my neighbor, who is bed ridden and has been in Hospice for a year and a half. She doesn’t want to live anymore so Hospice comes to her every day, I worry about her so much and I told her that today because of her constant bone and joint & muscle pain.When she found out I was Stage IV and going for treatments back in 2022 she had said she was also in treatment and had so many side effects. She was up and mobile back then and drove her car. One day we were talking and she told me she had decided to stop treatment, hated the infusions in her hip and said she was just going to hospice and die. I felt so bad because she was only 44 . I asked her what kind of cancer she had and she said she had a rare incurable disease that was the cause all of her pain in her bones & joints and everywhere in her body with high fevers and pericarditis around the heart and lungs., a painful salmon color rash on her limbs and torso….She said it was 

“STILLS DISEASE”

 an Autoimmune disease. , And she was not understanding that she need to see a Rheumatology Specialist. So Over the next year she lost her ability to walk and lost weight down to 88 lbs. Last year when her DH told me she was so thin I felt so concerned for her because we were going thru another cold weather spell in Feb & March. I hadn’t seen her In many months. So when DH & I were shopping in BJ’s I picked up some size extra small warm fleece lounging outfits, and some lavender vanilla candles and a plush fleece blanket & slippers because I wanted her to feel warm and comfy and encourage her, and sending them hot meals over when I was in the mood to cook. My DH is close to her DH and they are always back and forth looking out for each other. But I just don’t understand that she won’t fight her condition just to get more quality of life for herself & her husband. In some ways I see that at 40’s is awfully young to be bed ridden and in constant pain. So I spent the day researching different Physicians in our area who treat Still’s and chatting with her DH and her about getting out of hospice and have a doctor who will treat the Side effects of her disease and scan her regularly. A few months ago she fell and broke her ankle and her hip. Her DH carried her into the car and brought her to the hospital.. She was in for a few days they had her in quarentine because of her skin lesions.. they treated that and sent her home to revive a little and come back for surgery to her hip. But she wouldn’t accept any kind of treatment after her surgery and just went back to hospice. Up until now the ones who’ve been dealing with her won’t give her opioids or help her end her life. So I just needed to rant and share this story with you here. Thank you for listening 🩵🌷