Getting to know you so much as lightened up my life and every word said there's is how yourself and other's me to me and it's a pleasure to know we can throw wit and have such a great time when things get down.
Your so special Lori. xxx
loriken214 said:
Terri, you are my HERO! Thank you for sharing this with us!
Love you,
Lori
Tez_20 said:
This is dedicated to all my friends...who bring the best out on people and can still make them smile.
Love to you all...your ever devoted friend Terri xxx
Terri.....you're a hoot! I'm full of crap and love to joke around....my late Mom was born on Halloween and she collected witches...only for fun....no black magic!
Your not full of crap because that meaning here is as low as you can get...so please don't repeat that one again...i know you love a joke mate the same as myself.
Well if your mom did believe in black magic so what...i know i would have been intrigured, as i believe in cards fortune telling etc.
Hugs Terri xxx
loriken214 said:
Terri.....you're a hoot! I'm full of crap and love to joke around....my late Mom was born on Halloween and she collected witches...only for fun....no black magic!
Right thanks for letting me know mate what hoot means...funny how our words are so different plus meanings.
The C is most likely funny where you live but if a UK reader was reading it your down grading yourself dead low mate and i won't like that knowing how you are.
Dow mention halloween the fireworks will be going here soon for bonefire night but my baby dressed up one year for it and he was cute.
My mother in law has been on dialysis for over 10 years, she is the center's longest surviving patient there. She has a multitude of ailments, she just went through chemo and radiation treatment for Vulvar cancer. She can't stand, she uses a roller walker and a wheel chair and has had at least 3 surgical procedures this year. I asked my sister in laws if they considered she might have lupus, and they didn't want another disease to take care of. I dropped it, they don't understand that its possible and is the underlying condition of all her other illnesses. I try to understand what she goes through, but I haven't even told her about my lupus. She knows about my hand, and that's about it. I can see her pain, she tries to hide. I don't experience lupus as severe, but I think about her when I read your discussions. I don't know if or when mine will get more severe, honestly I feel guilty sometimes that mine is mild and others are more severe. I love all of you, and my heart breaks for all that you go through. I only have a glimpse of what you go through daily.
Love to you all, Trisha
jujubeee said:
I think lupus is different for everyone, and then again different at different times for everyone. For those of us with organ damage, lupus is a savage beast who threatens to destroy the quality of our lives at any moment. For those of us in which lupus is not mild, it is a life full of doctor appointments, labs, biopsies, tests. For those of us with extreme symptoms, lupus is a killer.
I wouldn't expect someone with very mild lupus to understand what it's like to have kidneys that don't function properly, a damaged peripheral and central nervous system, pericarditis, or skin vasculitis and photosensitivity so severe you cannot go outside without breaking out in hives, lesions, ulcers and discoid rashes that look like flesh eating disease.
Just please know that we do exist, we suffer and we FIGHT just as hard for quality in our lives as you do although we do not have the opinion that lupus is a small part of our lives, it has a much bigger badder role.
I went for my check up with my dermatologist on Monday and had a very interesting conversation with the nurse in the office. We were chatting about the meds that I take and I told her that I have SLE Lupus and she said "I didn't think white people got lupus" and I told her that I didn't know that white people DIDN'T get lupus! She was African-American and said that several members of her family had lupus and she didn't know that it went outside of her community. I said I only knew of my family members having it since my Great Aunt Flora had it and I knew about her my whole life growing up. My late MIL died from it, too, and she was white.
Also, I had blood work done on Wednesday and my kidneys are acting up again. I have to go for repeat tests to see what is going on. UGG!
I pray that your lupus doesn't get any worse, but know that you suffer just like the rest of us! We are all in different degrees of pain and discomfort and wouldn't wish this on anyone. Please never feel guilty for anything....you didn't ask for this and you have to deal with the issues like everyone else! Bless your MIL, too!
My rheumo told me that Benlysta isn't working on his patients and he isn't using it on anyone right now. I was the first and only patient that he tried it on and I ended up getting really sick and died from a sepsis infection. We want to try it again, but I have to have lots of things done to my body before we can even think about attempting it again.
Keep the faith and stay strong!
Love you!
Lori
sunrisetrisha said:
Julie
My mother in law has been on dialysis for over 10 years, she is the center's longest surviving patient there. She has a multitude of ailments, she just went through chemo and radiation treatment for Vulvar cancer. She can't stand, she uses a roller walker and a wheel chair and has had at least 3 surgical procedures this year. I asked my sister in laws if they considered she might have lupus, and they didn't want another disease to take care of. I dropped it, they don't understand that its possible and is the underlying condition of all her other illnesses. I try to understand what she goes through, but I haven't even told her about my lupus. She knows about my hand, and that's about it. I can see her pain, she tries to hide. I don't experience lupus as severe, but I think about her when I read your discussions. I don't know if or when mine will get more severe, honestly I feel guilty sometimes that mine is mild and others are more severe. I love all of you, and my heart breaks for all that you go through. I only have a glimpse of what you go through daily.
Love to you all, Trisha
jujubeee said:
I think lupus is different for everyone, and then again different at different times for everyone. For those of us with organ damage, lupus is a savage beast who threatens to destroy the quality of our lives at any moment. For those of us in which lupus is not mild, it is a life full of doctor appointments, labs, biopsies, tests. For those of us with extreme symptoms, lupus is a killer.
I wouldn't expect someone with very mild lupus to understand what it's like to have kidneys that don't function properly, a damaged peripheral and central nervous system, pericarditis, or skin vasculitis and photosensitivity so severe you cannot go outside without breaking out in hives, lesions, ulcers and discoid rashes that look like flesh eating disease.
Just please know that we do exist, we suffer and we FIGHT just as hard for quality in our lives as you do although we do not have the opinion that lupus is a small part of our lives, it has a much bigger badder role.
I pray that your lupus doesn't get any worse, but know that you suffer just like the rest of us! We are all in different degrees of pain and discomfort and wouldn't wish this on anyone. Please never feel guilty for anything....you didn't ask for this and you have to deal with the issues like everyone else! Bless your MIL, too!
My rheumo told me that Benlysta isn't working on his patients and he isn't using it on anyone right now. I was the first and only patient that he tried it on and I ended up getting really sick and died from a sepsis infection. We want to try it again, but I have to have lots of things done to my body before we can even think about attempting it again.
Keep the faith and stay strong!
Love you!
Lori
sunrisetrisha said:
Julie
My mother in law has been on dialysis for over 10 years, she is the center's longest surviving patient there. She has a multitude of ailments, she just went through chemo and radiation treatment for Vulvar cancer. She can't stand, she uses a roller walker and a wheel chair and has had at least 3 surgical procedures this year. I asked my sister in laws if they considered she might have lupus, and they didn't want another disease to take care of. I dropped it, they don't understand that its possible and is the underlying condition of all her other illnesses. I try to understand what she goes through, but I haven't even told her about my lupus. She knows about my hand, and that's about it. I can see her pain, she tries to hide. I don't experience lupus as severe, but I think about her when I read your discussions. I don't know if or when mine will get more severe, honestly I feel guilty sometimes that mine is mild and others are more severe. I love all of you, and my heart breaks for all that you go through. I only have a glimpse of what you go through daily.
Love to you all, Trisha
jujubeee said:
I think lupus is different for everyone, and then again different at different times for everyone. For those of us with organ damage, lupus is a savage beast who threatens to destroy the quality of our lives at any moment. For those of us in which lupus is not mild, it is a life full of doctor appointments, labs, biopsies, tests. For those of us with extreme symptoms, lupus is a killer.
I wouldn't expect someone with very mild lupus to understand what it's like to have kidneys that don't function properly, a damaged peripheral and central nervous system, pericarditis, or skin vasculitis and photosensitivity so severe you cannot go outside without breaking out in hives, lesions, ulcers and discoid rashes that look like flesh eating disease.
Just please know that we do exist, we suffer and we FIGHT just as hard for quality in our lives as you do although we do not have the opinion that lupus is a small part of our lives, it has a much bigger badder role.
Sorry to hear about your kidneys kicking off again mate and the best of luck when you go for your test.
My beloved hubby as been carrying some kind of virus flu and on thursday i felt terrible and by teatime i had several nose bleeds from pressure in my head and nose and yesterday i woke feeling totally drained it's really putting pressure and pain on my Lungs i do know that.
Regarding the African Americans having Lupus they also have scleroderma bad to us they carry that 80% and very few whites get it but i've got it mate and it's a serious disease besides.
I hope your ok mate and all my love Terri xxx
loriken214 said:
I went for my check up with my dermatologist on Monday and had a very interesting conversation with the nurse in the office. We were chatting about the meds that I take and I told her that I have SLE Lupus and she said "I didn't think white people got lupus" and I told her that I didn't know that white people DIDN'T get lupus! She was African-American and said that several members of her family had lupus and she didn't know that it went outside of her community. I said I only knew of my family members having it since my Great Aunt Flora had it and I knew about her my whole life growing up. My late MIL died from it, too, and she was white.
Also, I had blood work done on Wednesday and my kidneys are acting up again. I have to go for repeat tests to see what is going on. UGG!
Oh Terri....hope your and your husband are feeling better now!!!!!
I'm well aware of the statistics of who gets lupus more than others, but was shocked that this nurse had no idea that I could get it...LOL! She ended up almost crying for me and I told her that I can understand what her family members are going through. It was a bonding experience.
I'll go for more tests on the kidneys on Monday....was too tired to go again on Friday.
I wish I could put my arms around you and give you a hug. What a very difficult decision to have to make. In 2009 I was on methotrexate and caught H1N1. I nearly died was in a coma for almost four weeks and since we had never talked about it my poor husband had to make a lot of decisions he had to guess at my wishes about, What an act of Love to want to spare your husband that. I hope you are feeling better soon. XXOO Julie
You are a fighter, too, and I'm SO glad that you are here with us today!!!!! My husband would do anything and everything to keep me going, but I want him to know that I refuse to be hooked up to machines if there is no hope. I won't give up without a fight, though.
Best of luck mate with today with tests and update we lori please and i know you know about the statistics Lori you got Lupus bad enough but i bet you was shocked her not thinking we get it.
Lori ste's know better and he was surposed to take we to see a friend of his yesterday and instead he ended up taking me to the emergency doctor's as my lungs are bad and in pain as i thought i'd got pleurisy again, instead a bad long infection...that's all i need but this virus as hit other's including our neighbours with vomiting and diarreha.
Love you dearly Terri xxx
loriken214 said:
Oh Terri....hope your and your husband are feeling better now!!!!!
I'm well aware of the statistics of who gets lupus more than others, but was shocked that this nurse had no idea that I could get it...LOL! She ended up almost crying for me and I told her that I can understand what her family members are going through. It was a bonding experience.
I'll go for more tests on the kidneys on Monday....was too tired to go again on Friday.
To move out of bed this morning was terrible...it's affecting my nervous system for some reason when i'm trying to speak i'm having a game getting certain words out besides a cough...Lori i've had these issues so many times over the years i don't worry no more i just fight through like you do.
Thanks for being so concerned mate but i'll be alright when it lifts itself, how did you go yesterday about your test on your kidneys or was you unable to make it mate.
Love you loads Terri :) xxx
loriken214 said:
Terri.....how are you feeling????? I pray that you are much better today.....I'm worried about you!!!!!
Bless your heart Terri! You are a fighter and I adore you! You continue to inspire me!
Much love,
Lori
Tez_20 said:
Hello Lori,
To move out of bed this morning was terrible...it's affecting my nervous system for some reason when i'm trying to speak i'm having a game getting certain words out besides a cough...Lori i've had these issues so many times over the years i don't worry no more i just fight through like you do.
Thanks for being so concerned mate but i'll be alright when it lifts itself, how did you go yesterday about your test on your kidneys or was you unable to make it mate.
Love you loads Terri :) xxx
loriken214 said:
Terri.....how are you feeling????? I pray that you are much better today.....I'm worried about you!!!!!
Lori....it's nice how we have so much love for one another and respect where lupus is concerned..what ever it throws at we, we just keep going and i hope it helps members besides to show it all about fighting the disease and not letting it beat we.
