Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Its my birthday this week. I'm turning 32... I've been dealing with Lupus and Scleroderma (MCTD) for almost 9 years. and i'm sick of it.
I'm nowhere near remission. I've been having a really hard time with this lately. Probably because my body has been flaring so much.
Recently, I was really sick. I'd never seen my doctors panic before, now I know what it looks like. I really don't want to see that look in their eyes again. Basically I was having trouble breathing and my doctors freaked out when they saw the xrays and ct's. (lungs were crazy out of wack). They thought my meds were causing problems and switched me off methotrexate to plaquenil. I was on plaquenil years ago, but it did nothing for me then. We're hoping it works better this time...
I've been back on it for 2 months, and its keeping most things under control. Lung issues are getting marginally better, but the arthritis and fatigue are horrible. Plus the scleroderma symptoms are going nuts. My skin is tightening all over, I have horrible reflux and my raynauds is so bad I have sores all over my hands.
This is not how my life was supposed to turn out. I don't want to plan my life around figuring whether i'll have enough energy to shop for food. whether i'll have enough energy to have a shower. I want my life back. this is so unfair. I want to be able to go out on a whim. not pick the one day I can go out in a week because that's all I can manage. what's the point of a birthday except to mark the passage of time. I really don't want a reminder that I'm still sick and not getting better. Its the same every year.
k, that's my pity party. could really use a hug. my birthday wish is for this to all go away.
I'm nowhere near remission. I've been having a really hard time with this lately. Probably because my body has been flaring so much.
Recently, I was really sick. I'd never seen my doctors panic before, now I know what it looks like. I really don't want to see that look in their eyes again. Basically I was having trouble breathing and my doctors freaked out when they saw the xrays and ct's. (lungs were crazy out of wack). They thought my meds were causing problems and switched me off methotrexate to plaquenil. I was on plaquenil years ago, but it did nothing for me then. We're hoping it works better this time...
I've been back on it for 2 months, and its keeping most things under control. Lung issues are getting marginally better, but the arthritis and fatigue are horrible. Plus the scleroderma symptoms are going nuts. My skin is tightening all over, I have horrible reflux and my raynauds is so bad I have sores all over my hands.
This is not how my life was supposed to turn out. I don't want to plan my life around figuring whether i'll have enough energy to shop for food. whether i'll have enough energy to have a shower. I want my life back. this is so unfair. I want to be able to go out on a whim. not pick the one day I can go out in a week because that's all I can manage. what's the point of a birthday except to mark the passage of time. I really don't want a reminder that I'm still sick and not getting better. Its the same every year.
k, that's my pity party. could really use a hug. my birthday wish is for this to all go away.
Lupus sucks, no question about it!
I will send some prayers your way...
Take care,
Jon
God, please be with our friend at this time. Help her to know she is not alone. Please send her some comfort and relief from these problems. Amen.
Mary Ann
I'm so sorry for this. It must be scary seeing that the Doc's don't neccessarily know what to do.
I can really relate to having your life destroyed by illness sometimes right down to the core of your being.
I just want to wish you luck, wish I had better advice but I just want everyone to remember that depression can be a neurological symptom. If you are in a flare- that can be the signal that something is wrong. There are NO pain receptors in the brain. Depression is ALSO a natural reaction to pain and life restriction though. just keep an eye on it.
I got a cat this week, hoping it would help the feelings of loneliness and stress. And it helps a little, but its another stress I've added in now. Taking care of someone else on top of myself. Not sure I thought that one through, but I think it'll help in the long run. k, here's hoping the therapy works. *fingers crossed*
Love and hugs.