Wow, I can’t believe how many responses I have received on this forum! You have all made me feel so welcome and now I have a place to go to when I need answers or just to vent. I will respond to each person that responded to my post. However, I am under the weather right now and it may take me a while to get back to each and everyone of you.
Thank you for all your help and for making me feel that I am all alone with my illnesses.
I,too,have lupus,and macular dry eyes and have been on prednisone for three years.The prednisone does not bother my eyes…only I have to use eye drops twice a day.
I was going to reply to each post on the website, however, I am not feeling well and my eyes are swollen. I did not want to wait until I felt better to thank everyone for their advice and suggestions which I am going to try when I am feeling better.
I am so glad that I found this website as I know that I can come here when I Have questions or just to talk.I finally found people who can relate and know exactly how I am feeling. That alone raises my spirits.
Again, thank you and you are all in my prayers.
Hey Cleo,
Autoimmune diseases tend to travel in groups. Many of us are dealing with several at once. Maybe try to think of it as a disease of the immune system, and maybe you won’t feel quite so overwhelmed.
I am dealing with similar problems myself, and not super successfully at present I fear. I write you today to share a virtual ((Hug)) and support when you’re feeling so icky. Hang in there and try to take it one day at a time. If that doesnt work, try one hour, or even one minute. If you made it thru yesterday, you can make it thru today. There are so many good things happening in this research field. It’s so hard to hang in there and wait!
Ellen
Hang in there. Things will get better. Let us know how you are when you feel better.
Thomas Franklin
Cleo said:
I was going to reply to each post on the website, however, I am not feeling well and my eyes are swollen. I did not want to wait until I felt better to thank everyone for their advice and suggestions which I am going to try when I am feeling better.
I am so glad that I found this website as I know that I can come here when I Have questions or just to talk.I finally found people who can relate and know exactly how I am feeling. That alone raises my spirits.
Again, thank you and you are all in my prayers.
Ellen and Thomas,
Thank you for your support and encouragement.
somehow the first part of my post got sent before I finished. I received some bad news today and I’m having a very hard time dealing/excepting it. My eyesight has worsened. I could deal with just about everything else but not if I become blind. my eyes have been inflamed for a month now. The ophthalmologist put me on steroids eyedrops which are not working. He wants me to wean off of these in 20 days and he wants to try new steroid eyedrops.
I am totally terrified at the prospect of possibly being blind. I’ve cried when I got home from the doctors office. I know that was not the best thing for my inflamed eyes, but it upset me so much.
Thanks for listening to me.
Sorry to hear of this. Keep the faith. Perhaps the diagnosis isn't as bad as doctor believes at this point. I wish the best for you, and remember not to give up!
Thomas Franklin
Cleo said:
somehow the first part of my post got sent before I finished. I received some bad news today and I'm having a very hard time dealing/excepting it. My eyesight has worsened. I could deal with just about everything else but not if I become blind. my eyes have been inflamed for a month now. The ophthalmologist put me on steroids eyedrops which are not working. He wants me to wean off of these in 20 days and he wants to try new steroid eyedrops.
I am totally terrified at the prospect of possibly being blind. I've cried when I got home from the doctors office. I know that was not the best thing for my inflamed eyes, but it upset me so much.
Thanks for listening to me.
Thomas, thank you for your kind and encouraging words.
Honey I know to a point of what you’re going through it is hard there are days I want to just give up and all my days are getting up and watch tv no one at church ever checks on me but I keep turning to god he is so good he is their with his arms open I really need to do things but im limited to but I thank god every day I can get out bed alot of people cant even do that anyway honey dont give up with god anything is possible
Hi Creecie
Thank you for your post. I have been thinking about trying to find a Church that accepts people of all faiths. I am stuck in the why me mode, I am angry and have not yet been able to accept that I have this terrible disease. My minds what’s to do so many thing but lupus dictates what I can and cannot do. I am retired and thought now I am going to live and have a good time in my winter years. Alas, that will not be the case.
Hi again Cleo,
I agree with what Creecie Morgan said. On your worst days, God is always there with you and can help to comfort you. I've had to remind myself of this the past few days too! We all get our days!
Don't give up and keep searching for interests and activities. It took me quite a while to find great friends who would understanding that I can't always attend everything if I'm too exhausted or ill. They understand and just accept me as I am and I get together as often as I can. Dont give up!
Hi Lilac83
I’m sorry that I have not been able to answer your post until now. I am having a hard time accepting the fact that I have lupus and can no longer do all the things that I used to. I’m very angry that I have lupus and I’m depressed because of my situation. Right now I’m stuck in the why me Pity party mode. Of course, my family does not understand the exhaustion and all the other symptoms that go with having lupus and secondary Sjogren’s syndrome. My brother-in-law said that I did not look sick. I told him just because I did not look sick did not mean that I was not suffering. He also cannot understand the overwhelming exhaustion at times. As you know, it’s hard for others to understand what we are going through because they aren’t going through it.
I know that I have to move on but I guess I need more time to accept my situation.