It's been a while since I've posted on here, but I do read the postings a lot. My busy life seems to get in the way sometimes, almost to a point where somedays I forget that I have lupus. The daily medicine popping seems more like the vitamins I used to pop as a kid every day instead of life saving medications. Prior to having lupus, I thrived on stress. I loved having a high stress lifestyle and a high stress job. Once I got sick, I had no choice but to slow down.
Reading Barb's thread about being in the hospital reminded of when I first was diagnosed. It was a reality check about what's important in life. The ability to walk, pea, function, your loved ones -- that's what's important. Working for others, making other people happy all the time, playing 'politics' and games at work with other people -- it's so not worth our time and stress. Sometimes I forget that I am a very sick lady who is dealing with some amazing obstacles with class.
I have a situation right now that, after reading Barb's thread, seems so silly. (Most of you know I plan weddings for a living.) A photographer, who has been a long time mentor / friend, caught me in a situation with a (very!) difficult client's mother who was saying some very rude and inappropriate things to me. I stuck up for myself and the bride, who had even requested that I keep her mom away from her that day. (Isn't that sad!) This guy witnessed part of the conversation and has not only kept his distance from me, but has taken another girl with no experience, great taste in clothes (not all of us can afford a prada wardrobe) and a big rolodex and is now referring her business. Since then, I've also felt a very cold shoulder and almost judged by this person based on one negative incident (among the many positives and the oodles of money I've sent him over the years!) I felt like such trash and I was like, 'what did I do?' I have been so upset this week, comparing myself to this girl (who I personally have never cared for prior to this) and trying to figure out what I did that was so wrong.
Then I read Barb's thread about being in the hospital and it hit me. People who play games like this have not had a major tragedy hit them. You look at life a lot differently and you realize what is truly important. Life is not about making tons of money. It's about doing things you love, surrounding yourself with good people and enjoying what's around you. It's about sticking up for yourself when others try to treat you unfairly or like crap. As lupies, we need to surround ourselves with people who are a good, positive influence on us. We've been through enough as it is. We know that everything we have and know can be taken away like the snap of our fingers. I am so grateful to have made a decent recovery. Granted, I'll never have my pre-lupus body back, but at least I am alive. Life is too short and you need to live every day to the fullest as if it is your last. We're all human, we make mistakes, we have shortcomings, and we all deal with our own demons. Everyone is thrown a curve ball at some point in their lives. Our curve ball was lupus. How are you dealing with your curve ball today? If you're in this chat room reading these posts, you're dealing with it in a positive and resourceful way.
When I was in the hospital, my favorite character was killed of my soap opera. (Cassie on Y&R!) I bought the soap opera digest that week because it said on the cover that Cassie died. I keep that magazine in my desk drawer to remind myself about how that week, Cassie died but I lived. That meant that I still had living to do.
That's it -- reality check for kp!
Diagnosed with lupus in May 2005
Prednisone, 5 mg
Imuran, 50mg 2x a day
Warfarin, 5 mg / day
Zoloft, 100 mg / day
Plaquanil, 200 mg 2x a day
Nexium, 20 mg / day
Tramadol, 50 mg 2x a day (as needed) and Tylenol
2000 IU of Vitamin D
Centrum Silver (and I am 30!)