Jennifer's story

Living with Lupus My name is Jennifer. I am 28 years old and have been living with Lupus for 13 years. This is my story:
As a child, I was very sick. I had my tonsils out at 5, hospitalized for pneumonia at least once and double pneumonia once, mono, reynod's, and got sick very very easily. I can't remember what else, I just know there was always something wrong. When I slept, I slept like the dead, even as a child. This being said, hindsight is of course, 20/20.
I was 14 years old and woke up one day to find a dark red blotch on my face, just under my right eye on my cheekbone. Having been blessed with incredible skin, I was not prone to acne, even as a teenager, so this was odd. The mark stayed for a couple of weeks and in that time my mother took me to the doctor to have it looked at and then to a dermatologist. I remember them asking me weird questions that I didn't think related at all to the red mark on my face; they were asking me things like, "are you stiff at all? Are you in any pain? Soreness in any joints?" No was the answer to all of those, except for the question, "do you find yourself tired more than usual?" Well of course, I was a teenager..for the past couple of years I had noticed that I was exhausted most of the time. I avoided physical activity like the plague because I knew that I would be worn out 5 minutes in, so why bother? I wasn't worried about my physical condition; after all, I was 5'2", 14 years old and 75 lbs. I thought that was great!
Time went by and my parents were on my case about me wanting to sleep all the time, falling behind when we were out walking around and about my severe lack of appetite. They were constantly accusing me of just not caring, my lack of effort and how they thought I was trying to "escape" by sleeping all the time. (of course, they thought this was all typical horrible teenage behaviour). They accused me of being anorexic, which trust me, I was not.I really enjoyed eating, its just after 2 or 3 bites of anything, I was full! I'd eat several times a day, very small amounts. I was frustrated by this too. I wanted to be able to sit down at dinner time with my family and eat everything on my plate. I was never able to and every night my parents would yell at me for it.
A few weeks later, the mark on my face still there, now with a dark purple hue and getting bigger by spreading across my nose and to my other check I awoke one morning and was rather stiff. My entire body hurt, but I just chalked this up to the fact that I must have slept wrong. The "kinks" as I thought they were didn't go away all day. I made my way through my day at school, but couldn't wait to get to bed. This went on for 3 days.
Day 3 was a day I will never forget. It took me 4 minutes just to sit up in my bed. Another couple of minutes to swing my legs down to the floor and I was barely able to walk to get to my bedroom door. It felt like I hadn't moved for months and now I was trying to break out of some mould. It hurt so much. I was stuck in my room too.I was unable to grasp my door knob to open my bedroom door. I had to call for help. My Mom came in with great concern and asked me if I wanted to go to the hospital. Pride in the way, I declined and insisted that I must have slept wrong again. Deep down I knew this wasn't the case, but what else could it be? I made my way to school.
I hadn't even made it to first period yet. I was trying to get into my locker and couldn't turn the dial on my padlock. I was so exhausted I considered sitting down on the floor beside my locker and grabbing a quick nap.this obviously not being a wise choice I called home. My Mom answered the phone and all I said was, "I'm ready to go to the hospital now please." She came and got me and off we went..
I remember little of what went on the rest of that day. I remember I had on a grey t-shirt and blue jeans, my hair was down as I was unable to put it up (how I usually wear it) and I had slip on shoes. They did a LOT of blood work, lots of DNA testing and asked me lots of questions. I slept while we waited. Finally, after several hours, the doctors came back and were speaking to my mother. I was to be admitted that night. This was when I became slightly worried. No one had any answers and all they told me was that they were testing for a number of different things.
Time passed at a very slow rate. My mother, who my heart bled for, stayed with me in the hospital. She slept on the couch and it was evident to me that she was worn right out. I had been put on an array of meds, so I was fine.I was still stiff, but could at least walk around. Most of the time, I was hooked up to an IV. I was giving blood at least twice a day as well as urine. They wanted it all! Three weeks went by of this.February 14, 1995. I was wandering around the hospital and was sad that my mother was spending Valentine's Day with me at the hospital instead of with Dad. I wandered down to the gift shop and bought my Mom a red carnation and a Valentine's Day card. I took my gift upstairs back to my room to find my Mom looking more distraught than usual with tear stains down her face, and 2 doctors standing there. I insisted that I was fine, and wished my mother a happy Valentine's Day. She hugged me so tightly...The 4 of us sat down and the doctors explained that I have just been diagnosed with Systemic Lupus Erythematosus. They then began explaining what that was...
Shortly thereafter, whatever medications I had been on were changed. I was now on 60 mg of Prednisone and 400 mg of Plaquinil.drugs I would soon learn a great deal about. My appetite finally increased to say the least. Shortly after my diagnosis, I was released from the hospital. I would return to high school having left 75 lbs, returning at 120 lbs..at 14 years old, the diagnosis was nothing; it was the 45 lb weight gain and the VERY round face that I was most concerned about. Before my return to school, my parents had a meeting with all my teachers. My teachers had done an outstanding job of preparing my classmates for my return and fortunately, I only had to deal with the stares and lots of people asking, "are you ok?"
Throughout my teenage years, adjusting to living with a chronic illness took some time. On top of the regular battles that teenagers go through, I had this very extraordinary situation to deal with. It affected me at school in that my levels of concentration and memory loss frustrated me more than anything. I also regularly dealt with the issue of slurred speech, or not being able to get the words out. My weight fluctuated with my medication, but oddly, I didn't let that bother me as much. I knew it was the prednisone and that the better care I took of myself, the sooner I'd get on a lower dose.
I went through the teenage years doing what most teenagers do. I smoked, I did drugs, I drank and partied, however all within great moderation. I never let my peers know that I wasn't as drunk as them, or as high as them or whatever. I was so in tune with my body and knew what I could and could not handle. No one else needed to know that. I also wore a medic alert necklace and never, ever took it off.
As an adult, I learned that it was best to let my teachers/employers know right away that I am living with a chronic illness. Often, I'd have to take them aside and have a sit down chat explaining what SLE was and how it affected me here at school/work. I have been very fortunate to have always been surrounded by people who were at least willing to listen. I discovered that having a support network (family, friends) was invaluable as well as knowing enough to be able to answer questions. When living with a chronic illness, you get to know more about your illness than your doctors. Lupus affects everyone differently, so only you know how it really affects you each and every day. This took me a while to figure out, but once I did, life became easier to handle.
Today, at 28 years old and a self professed pro at living with Lupus, I am still on Prednisone and Plaquinil. I am also seeing a Naturopath, something I wish I'd done years ago. I have learned that I can control my health a lot better by knowing what foods I can and cannot have.turns out I'm allergic to gluten among other things. I wish I'd known that a few years ago too! I have of course, not included anywhere near all of the struggles of living with Lupus. This was just a general "here's how it started" story.
Today I am happily married to a wonderful man, my parents and brother are all healthy (no history of Lupus in the entire family) and I live an active life by eating right, exercising and focusing on my frame of mind. I'm a big believer in "mind over matter." I am not a victim, but a survivor. I consider this just another challenge and think that if the Big Guy Upstairs didn't think I could handle it, He wouldn't have dealt me these cards.
My heart breaks when I hear of someone else being diagnosed with Lupus because I know what an incredibly difficult struggle it is. Tell people you have Lupus because chances are, they know someone who has Lupus too. Its not easy an easy way to live, but its not impossible. My biggest advice to those who are living with Lupus and to those who are newly diagnosed, find out as much as you can. Learn about your illness. Listen to your body. Its ok to give in some days. Reach out for a hug, and come back tomorrow or even the next day, well rested and smiling!
Jennifer