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View Full Version : 13 years later...



seiles
12-22-2006, 05:26 PM
This is my first time to this website... I just turned 27 years old - and I was diagnosed with lupus when I was 14 years old. And believe it or not, I am just now realizing that I haven't really accepted having lupus. I have been trying to keep a normal kind of "lupus-free" lifestyle for 13 years!!! I have been pushing myself - in sports, and in school, and in my career - for 13 years! Telling myself that I can still do everything - and when I'm tired I'm just being lazy. Within the last year, depression and my emotions have caused a lot of havoc in my life - and I am just now realizing that I need to accept the role of lupus in my life. I'm not sure how I'm going to do that - but I'm starting by reading books, being a member of this website, and going to a counselor. I have been through many friendships (or what I thought were friendships), went to college full-time while I was going through cytoxan treatments for stage 4 kidney disease, and two years ago was addicted to vicodin because of all of the pain I was having (pleurisy, shingles, wisdom teeth removed, etc, etc, etc). My vicodin addiction turned out to be just a way to cover everything up. Cover up the pain - make me feel happy - it would make me sleep so I wouldn't have to deal with the hurtful, depressing things. I have been vicodin free for 1 year and 2 weeks - and am now coming to the realization that a lot of what I have been feeling emotionally for the last 13 years is due to not accepting that I have lupus. I got married in May and my poor husband has been through a lot of my emotional ups and downs. I have just recently realized that to be good to myself, to be good to my husband, and our relationship - I have to make some changes. I have to accept this disease and make some changes in my lifestyle to help myself, so I can be a better wife (maybe someday mother). I somehow need to learn to accept that I cannot do EVERYTHING - I cannot always run around and be active - I need to listen to my body. I think I need some suggestions from people who have been through some similar situations. I am a medical technologist - I worked on nite shift for 2 1/2 years and am now (last week was my first week) on day shift. I work full time - and need to for the insurance purposes. Any suggestions would be wonderful! Thank you!!

MARYCAIN
12-22-2006, 05:46 PM
You're making a great start by reaching out for support. You are obviously a strong person to have overcome your addiction. There are some folks on the forum who have beeb living with this disease since they were teens too, and I know they will be able to relate to your situation. Welcome!

ButterflyRN
12-24-2006, 10:15 AM
I think the first wonderful thing you did for yourself was get off night shift. I am the same age as you and was diagnosed at 11 years old. I worked for 3 years on night shift as a nurse until I had a major flare a little over a year ago. I went to work at another hospital and now work part time and only on the weekends....weekends aren't fun but it's less stressful. I've been through the cytoxan for stage 4 kidney disease too. I had cytoxan when I was 12 (and for over 5 years) and I just had a second round of it just this past February. This is a hard disease to live with and essentially accept. There are so many supportive individuals on this site and you will have all the support you need to help you accept your disease and help you live with it. I wish you lots of luck.
Merry Christmas