I have an amazing support group, and they have done every Lupus walk with me.
I was so glad I was in tune with my body. I was always really tired and my body always ached but I figured it was just from being a mom of two very active boys and my job, a 911 dispatcher, and the stress. Then for about 6 months my menses was off. I would get it two times a month for about 12 days, which was very odd for me considering I would normally go 2-4 months without having one my whole life.
I went to my amazing OBGYN who decided to do blood tests on me and found that my platelets were extremely low and decided to send me to a hematologist. I wasn't too fond of my doctor, he was very cold and not personable but he was the best, and he always greeted my husband with a smile and joked with him; odd, yes. He gave me 5 different diagnoses and said I would have to go to a rheumatologist, who finally gave me my answers, Lupus and Fibromyalgia.
I have an amazing support group, and they have done every Lupus walk with me.
I thought my life was over. I had two small kids aged 8 and 12; how do I explain what's wrong with mommy? They already saw that mommy wasn't able to play with them as much anymore, she's always tired and in pain. Well, I explained it to them as best I could, my younger son cried and really stared attaching himself to me: he didn't want to let me out of his sight and didn't want to go to school and leave me.
My older one got angry and became distant with me: I felt like he had already cut me off and didn't want to be close to me because he was angry and didn't understand why mommy had to be sick. My husband, who I have been with for 23 years now, married for 13, accepted the diagnosis but didn't really understand. He didn't want to do the research with me; denial, I guess. He also had that "but you don't look sick" mentality that most people have, though he's known me since we were 13. I had to go to work part time and applied and was denied for disability. I couldn't go to my kids' games or a lot of functions, and I slept a lot.
My mom has definitely been there for me, she really pushes me to try holistic and naturopathy treatments. She's always looking up different vitamins and natural remedies for me to try. My girlfriends are definitely there, they are amazing, they can just look at me and know when I'm not feeling good even though I try to hide it and push myself so I can be social. My husband has really come around; he knows my limits and now he tells me when he knows I've done too much, and tells people we can't go to functions because I've already done too much and need my rest.
I have an amazing support group, and they have done every Lupus walk with me. They have donated so much to the cause, and have even gotten tattoos of purple ribbons which fills my heart with so much love for them. I am so blessed to have these amazing people in my life. Even my co-workers are amazing; they can also tell when I'm not feeling well, and my supervisor can just look at me and sends me home even when I say I can stay. They are so understanding and are so flexible with me and my work schedule.
It always helps to be able to talk about it. If you keep it all bottled up you don't feel better physically and emotionally—give it to the universe, get it out of you. A great support system is always helpful. And do research and ask questions when you go to your doctor. Also live life—don't let Lupus run your life, and if you have a good day go out and live so you have no regrets. Spend time with the ones you love every minute you can. Make the fight worth it.
I still have a hard time with knowing my limitations. I want to be the active person I was my whole life. I want to be the old me. But I know I'm not, and that I've had a huge part of my life taken from me. I allow myself to have a pity party once in awhile but I don't let it take me over. I have too many people to fight for, especially myself.
I've become very involved in the committee that plans our Lupus walk, and I've met so many people who have Lupus this way. I had not known or heard about Lupus until I was diagnosed with it, and there are so many people with it that there was no way I was gonna just sit back and hope for a cure. I had to get awareness out there. If not to save me, then the next generation or anyone else out there that might not have the same resources I do. I am such a huge planner, but it's hard with this disease. So I take one day at a time, and thank God for waking me up every morning to live another day with my family and friends, and I cherish every moment I have with them, good day or bad.
I live by the saying, "God never gives you more than you can handle," and I feel like everything happens for a reason. I look at my life and feel like I was given this disease for a reason, as obviously God thinks I was strong enough to handle this. This disease has definitely made me slow down in life, but I appreciate things more. Lupus doesn't have to be a bad thing. I know others have the disease a lot worse than I do. I pray for them, but it makes me thankful that I'm at the stage I'm at right now. I just hope and pray it doesn't get worse for me, but I know I will handle each step as they come.