Location: Fleetwood, NY
How have your conditions affected you? Lupus is exhausting; I need to sleep at least 9 hours a day. Working in New York City as an Office Manager/Jill of All Trades/Marketing Assistant required far more of me than Lupus would allow. It was so refreshing when I got diagnosed with Lupus because I was justified in the pain I felt as a commuter. I didn't think I was old enough to have such back and leg pain from having to stand on the subway. I knew something wasn't quite right. Six years of that pain and exhaustion caused by Lupus led to anxiety which also led to a bad tempered commuter. I felt bad about needing a seat when I looked like a strapping young woman. It was a blessing in disguise when I got laid off from two jobs in the course of two years. Two companies' finanial troubles were my saving grace. Now working as a Nanny and a Tutor, I get the hours of sleep I need and have a significantly lighter commute.
PCOS is a condition that affects more than the ovaries. The illness can confuse hormones and even halt their functioning. Insulin is a very important hormone and PCOS often leads to diabetes, which is what happened to me by 28. I worked out several days a week and the previous two years had trained for a marathon. I ate hearty but healthy. Imagine my surprise at gaining nearly 50 pounds in a short five months. After going on a very restricted diet and starting two medications I lost 40 of those pounds in just three months. The aches and pains were getting much worse around that time which eventually resulted in my Lupus diagnosis.
Oftentimes the medications of Lupus and Diabetes can cause stomach troubles. I let these troubles bother me unassisted for a year and a half before I finally saw a gastroenterologist. I tested positive for Crohn's and am scheduled for further tests next month. I have been on a gluten free diet for three months now. I notice that not only are my stomach problems less, but my lupus symptoms are not as severe.
What would you like for other people to know about your conditions? I really, really hate when someone tells me I don't look sick. First of all, my conditions are not skin deep. They cause pain and complications that no other person can see or feel. Second, I don't let anything get me down. I grew up in an abusive household, then lived on my own at a very young age. I even put myself through college and graduate school. I am not going to let an illness or nearly half a dozen illnesses be the catalyst to my downfall. I have survived far too much to admit defeat to anything at only 32 years of age. That being said, I see a lot of people give up when an obstacle appears. I want people to know that giving up should never be an option. Whatever your illness may be, you should get involved with it. I am actively involved in many charity walks. Not only do you get some exercise, but you are raising money for an awesome cause. And it's even better when that cause supports you! Not to mention all the wonderful new people you will meet who also may have your illness or part of the medical team working to cure it. If charity walks or other fund raising events aren't your thing, find a support group. There are online groups if you can't find a physical group near your home.
What would you like to tell someone who is recently diagnosed with your conditions? I would recommend a gluten free diet to anyone with an autoimmune disorder. I have read a lot of research and while there is no government or CDC verification, on a personal level it seems to work for many people. Try it; it can't hurt anything to see how it works for you. Except your wallet a little bit, since gluten free products do tend to cost more. Also, follow your doctors' orders, take your medications. Get the correct amount of sleep, eat well, drink plenty of water and get some low impact exercise. It's the most basic of things that everyone should follow, but it's easier to fall off track when you aren't feeling well. And please take the pity party elsewhere. The more you feel sorry for yourself, the worse you will feel. You have to stay positive even when you are feeling at your worst. I joke a lot about my conditions, not because I am belittling them, but because I choose to keep a sense of humor about everything in life. Lastly, massages are my treat. I save up my money and try to get an hour massage once a month. In addition to rubbing away the aches, massage helps circulation.
Christina's favorite quote: "Just keep swimming, swimming, swimming" - Dory in Finding Nemo. Even though she had short term memory loss which led to several problems for her, she was always so cheerful and just kept moving forward. It's a good mantra to have.
Thank you so much for sharing your story Christina!