View Full Version : My Lupus
03-07-2009, 04:37 PM
Hi, my name is Debbie & I have LUPUS. Before LUPUS my life was normal. I raised a son, had a job, spent time with my family & friends. I was living my life. But now, l really must say, life with LUPUS is very different, challenging; itís almost like a new beginning. I was diagnosed in 1992, after a trip to Ireland. The next day, I couldnít move, at all. When I did try, it was like trying to move a mountain, you canít! I looked at myself, looked at my fingers & my toes. WOW they looked like stuffed sausages. I had this red thing across my nose and cheeks, it was so strange. When my PCP, said he thinks I have LUPUS. I said, ďLUPUSĒ?? Iíve never even heard of such a thing. So you can imagine all the thoughts going through my mind! I did my research and started to live my life very differently. I must have a doctor for every organ in my body...LOL. I've had 6 surgeries, soon to be 7 in March. I probably go to the doctors about 5-6 times a month. The times that Iím the strongest is when Iím having a flare. It takes all my will and God just to turn over in bed, from side to side. You should see me try to walk to the bathroom! Or, I should say, CRAWL to the bathroom! I think Iíve accomplished a lot with LUPUS. Iím still working everyday or as much as my LUPUS allows me. Iím a finance counselor at a wonderful University. I have a new grandson who is just starting to learn how to walk. I excersie at least 3 days a week. I love to go swimming, indoors of course. You know us LUPES & the sun!! My whole family participates in the annual LUPUS walk here in Phoenix, AZ. If I were telling this story to someone who didnít know I have LUPUS. They probably wouldnít think it was a big deal. Because it sounds like what most people do most everyday. Since people with LUPUS donít look sick most of the time, it is a big deal. Every time I go out in the sun and risk a flare, itís a big deal. Every time Iím able to even brush my hair without my knuckles hurting, itís a big deal. I have a great support system in my family & friends. I have one special friend who would do anything for me. Iím very thankful for him & my family everyday! I thank god for my LUPUS, my life is better because of this. Iíve come to appreciate life, down to the smallest pebble God has created. Thatís my LUPUS life in 500 words or less. Remember, just because you have LUPUS does not mean you ďCANíTĒ it means you ďCANĒ.
03-08-2009, 09:09 PM
Hey there, i'm sorry to hear the tough time lupus has given you. Luckily your obviously a strong person, and theres plenty of people on here to talk to if times to try you, just go to Lauris Lounge and post there! It's really good to hear when people who have such a tough time overcome it. I can totally relate to the getting out of bed being a bit of a challenge when flaring, its like a concrete blocks been put on top of me, and to get over that, even if its just rolling out of bed is a sign that you can fight the illness as best as possible.
If you need a chat to anything feel free to message me :D
03-09-2009, 10:33 AM
I am sorry that you suffer so much from Lupus, but it does sound as if you are a very strong and positive person. One thing that many have said, about having this disease, is that it makes us learn how to appreciate the truly important things in life. I am glad to hear that it has done the same thing for you.
Swimming is also my favorite form of exercise, however I do not have an indoor pool. So, I slather up generously and wear a t-shirt over my swim suit. In Arizona, it must be very, very difficult to avoid the sun! Make sure that, when you must go out in the sun, that you wear a very good sunscreen, loose fitting clothing that covers your body, good sunglasses and a hat! I always say that we Lupies cut a fashionable figure during the summer months (lol).
I am so glad that you joined us and know that you will find a lot of caring people here who are always happy to be here for you.
Peace and Blessings
05-14-2009, 09:10 PM
Hello Debbie... :wavey:
I'm sorry I missed this post and didn't catch up with you when you first joined.
I just read through your post and I'm so impressed with your positive, upbeat attitude. Sounds like even though you've had an incredibly tough time and have been through some difficulties, you have learned how to live well and enjoy your life despite having Lupus.
I'm happy to hear all the positive things that you are still able to do...the swimming, exercising, enjoying your wonderful Grandson and being there to watch him learn to walk. What fun! :veryhappy:
Just wanted to wish you well for surgery #7, whatever it is. I hope everything works out just the way you want it.
Please stick around and keep posting. We can always use as many people with positive attitudes and encouraging stories that we can get. And I'm sure you'll be able to contribute your experience and knowledge of living with Lupus to help others.
Glad you found us!
05-14-2009, 09:54 PM
Welcome Debbie! Welcome and THANK YOU for the positive energy you have put out and I hope I catch some of it. I never thought to thank God for Lupus. I questioned WHY ME! Reading your thread maybe me think yes...be thankful for Lupus. I really hope you write more because your spirit came through and positive spirits and people are quite encouraging.
I am glad you joined and like the support you have amongst your family and friends you will find the same support here.
05-15-2009, 09:40 AM
i'm glad you have a good attitude, i think that's the biggest key to not becoming a depressed blob with lupus. welcome and i hope things get better.
05-15-2009, 12:12 PM
I felt some positive vibes and followed them to here WOW and well done you!!!! Sorry to hear of your struggle though,but wish you luck for No.7.You have us behind you now.....so you'll be flying high by the time surgery gets here.Welcome....glad you found us.