I too debated my quality of life as this illness took many of my choices away from me. I finally decided to retire (at an early age). It was the best decision I have ever made. We "downsized" our lives and are able to make it within our income. I use my limited energy the way I choose - not dealing with work issues. Please hang in there, it does get better. Keep checking in.
Lisa
aisa64 said:
I was recently dignz with copd, I have never smoke nor had any lungs infection, just lupus doing its thing. i use oxygen at night and breathing treatment twice a day. Its a struggle and i'm still adjusting to it. No choice but to accept it. i'm still able work but sometime i think about checking out, aisa64
I don't know anyone who has ONLY lupus, not for long anyway, because lupus attacks the tissues, glands and organs, which brings up more diagnosis. I don't want to list my dozen+ health problems right now, but I am SO glad you said "auto-immune hepatitis" because that's my current problem, and I'd never heard of it nor heard anyone else ever mention it in all the lupus groups I have ever been in. People think "contagious!" when they hear "hepatitis" so I just started saying "lupus caused some liver damage."
I don't know anyone who has ONLY lupus, not for long anyway, because lupus attacks the tissues, glands and organs, which brings up more diagnosis. I don't want to list my dozen+ health problems right now, but I am SO glad you said "auto-immune hepatitis" because that's my current problem, and I'd never heard of it nor heard anyone else ever mention it in all the lupus groups I have ever been in. People think "contagious!" when they hear "hepatitis" so I just started saying "lupus caused some liver damage."
I really do hope your able to get some help, even though members are helping as hard as possible because you've been struggling a while with your situation and needing care and chatting with you...i found out your one wonderful person.
All my love to you Terri xxx
Amy H said:
thank you for your ideas. i went online to apply for inclusive health federal option health care in NC, and i can't afford the monthly premium $250/month. have to wait until Monday to talk to customer help and see if there are any options. again, i am open to any ideas.. and thank you so much for caring, amy
If your like me i'm as straight as a dye and there's no point holding things back because like you say SLE does cause some issues and no point walking about blind folded.
I do feel for you with that butterfly rash when i had it when i was 29 it was that inflammed and sore in redness it lasted months...is yours sore or carry a very sore look? and you can't help what your going through and you know my saying "people can either take you or leave you" but at least you've excepted it well yourself.
Hugs Terri xxx
loriken214 said:
We are all in this together...I'm usually a very positive person, but I tell it like it is and people are amazed at what SLE is and does to the body. My moon face and butterfly rash are constant and it took my friends and family a long time to adjust to the "new" me. I'm still in the fight, though.
Lori
Tez_20 said:
Hello Lori,
I do admire you though with all these issues you have and what we've chatted about but your the same as myself and such a large majority of other members...we're all in the same boat so we mays well keep on swimming.
Love Terri xxx
loriken214 said:
Oh, I'm now a Type 2 insulin dependent diabetic, too. I could go on, but I've already taken over your discussion. Prayers for comfort and healing to you! Lori
Terri, thank you for all the love you have to share. this site has been a blessing because of people like you. being alone in my situation makes it even tougher., but i have been thankfull to find someone here to chat with on most occasions. I met Julie here yesterday, and it was like we have been friends forever. I am grateful for this site and the wonderful people who are here. Hope you are feeling good and staying strong. God Bless, xoxo amy
Some lucks going to come your way...just the same as it as for me finally for well over a year.
I've been alone like you know i have'nt had my parents and hubby all the time and you struggle but still fight through because with me when i was on my own i was mentally cracking up, i had a nervous break down that took me to the edge, the neuro nurse did home visits on me then and she had me put on a 24hr watch being knocked up when they came to check on me.
Like yourself though joining the site besides having ste as given me more hope, i excepted being diagnosed with the lupus but it's been for me a relief being able to share my experiences eith such as yourself and others....it releases alot of issues ouT.
Most doctors haven't heard of non-viral hepatitus. It was my first.
Stay well
Sheila W. said:
I don't know anyone who has ONLY lupus, not for long anyway, because lupus attacks the tissues, glands and organs, which brings up more diagnosis. I don't want to list my dozen+ health problems right now, but I am SO glad you said "auto-immune hepatitis" because that's my current problem, and I'd never heard of it nor heard anyone else ever mention it in all the lupus groups I have ever been in. People think "contagious!" when they hear "hepatitis" so I just started saying "lupus caused some liver damage."