In June 2001 I had just got my own insurance through my employer so I decided to break away from my moms doctor and find my own doctor. I went in for my first visit with a list of problems. In that visit while I went down the list of telling her how my whole body always hurt, how I was always tired, how I easily got sick and I’m always sick along with other things the doctor stopped me and asked, “have you ever heard of LUPUS?” I said well yes, actually I have, my older sister was just diagnosed a year ago with that and also my best friend lost a friend to lupus about 2 years ago. She said, “well I don’t want to alarm you but right now you have the classic butterfly rash and although you haven’t mentioned anything about the rash everything else you have said falls in the category with lupus and the rash on your face is telling me to test you for lupus.” I told her, “well that redness comes and goes, it can be there now and gone in few hours.” She said, “yup that sounds even more like it.” Now remember we are talking about 2001 when there was very little information about lupus on the Internet. So I knew almost nothing about it.
She went on to explain that she would test for autoimmune disorders and if I tested positive she would refer me to a rheumatologist who then would do more specific testing and treat me for Lupus and she would just treat me for general sickness.
I decided to not tell my family anything and just keep it to myself. I only told my boyfriend who is now my husband. So while I waited for the results I searched online for any information I could find about Lupus and at that time everything was so negative! Everything I found resulted in death. There was very little positive outcome for people diagnosed with lupus. I also read if lupus was hereditary and at that time the answer was no and as we know now it very well can be.
I was at my boyfriend’s house when I got the call from the doctor’s office. I did miss the call but she left me a voice mail to call her back. I called her back from my boyfriend’s house phone. When I called her back she told me that as she suspected my test came back positive for autoimmune disease and that I needed to see a rheumatologist ASAP! Because of all the stuff I had read I immediately started to cry. i dropped the phone and started sobbing! My boyfriend picked up the phone got the rheumatologist information from the doctor and then came to comfort me.
Within a month I went to see the rheumatologist and that appointment didn’t make me feel any better. He ordered more tests but based on the test my doctor ordered and the symptoms I presented he said I did have lupus and it was at this appointment that he told me he strongly recommended I not plan on getting pregnant because it would put my life at risk. Since I was young at the time I wasn’t sure how I felt about that but at the moment I wasn’t too concerned. I was started on Plaquenil 200mg 2x a day and was told I’d be on this medication for the rest of my life.
In the summer of 2002 the pressure of dealing with the disease and medical bills had taken a toll on me and I had an anxiety attack and nervous breakdown and ended up hospitalized. While in the hospital I said something along the lines of I was so frustrated i wanted to drive my car into a wall! Well this was enough for them to want to hold me for psychiatric evaluation, because I was over age 18 I would have to sign myself in and under my parents advice I did. I didn’t realize they where actually admitting me into a crazy hospital. Of course with all this my disease is no longer a secret. When they admitted me, my anxiety got worse and I cried. All I did was cry and my lupus flared bad. After 2 days in this hospital they realized I did not belong there and they discharged me but by then my lupus was in full flare and I started my first high dose of prednisone 40mg. Prior to that I had only done 20mg during flares. My flares consist of joint aches, migraines, and severe fatigue and now body rashes.
I did start having other symptoms which led my rheumatologist to diagnose me with secondary Sjogrens syndrome.
In January 2003 I got engaged to my boyfriend of 4 years and we started planning our dream wedding for September of 2004 but then in May of 2003 I became pregnant with our 1st child so we decided to move up our wedding to September of 2003. When I announced my pregnancy my family immediately became concerned due to what the doctor had told me about not getting pregnant because it can put my life at risk. I immediately made an appointment with the high risk obgyn at the hospital near me and they where able to put my fiance and my parents mind at ease letting them know that medicine has come a long way and that they would monitor me very closely throughout the pregnancy and make sure both the baby and I where healthy. I got married September of 2003 then I went on to have a healthy baby boy born at 35 weeks and 4 days on January 5th, 2004. I did flare a month after i gave birth and also had to have my gallbladder removed and spent a week and a half in the hospital when my son was just a month and a half old, but then got better. Then I continued with my two flares a year. Then in 2005 I became pregnant again and on June 25th 2005 I had a very heartbreaking miscarriage and the doctor’s could not tell me if it was lupus related or not. My baby was 12 weeks old. I heard and saw his or her heartbeat and he or she fought for several days after one doctor told me I had miscarried and I refused to believe so I kept taking care of myself until June 25th when the baby’s heart beat went away. Then in 2006 I became pregnant again and that pregnancy was a tough one, I flared during the pregnancy, I had a lot of body pain and towards the end of the pregnancy I came down with a cold causing me to drive myself to the ER because I didn’t feel my little guy moving, I was 34 1/2 weeks. The doctor’s told me they would have to induce me otherwise the baby was at risk of suffering a heart attack. I was told the baby may be on breathing tubes because his lungs may not be developed yet but at this point there was no other option. So due to the lupus they had to induce. Thankfully after 2 days of labor my little guy was born on March 21st 2007. Healthy and breathing on his own and we where both able to come home together.
November 2007 I again had another miscarriage, this time however it appeared my body had been producing a pregnancy without a baby, I can’t think of the medical term but basically it’s the amniotic sack develops without the baby. I was about 11 weeks pregnant and again the doctor’s couldn’t tell me if it was lupus related or not. With this miscarriage I did hemorrhage and we had a big scare so my husband and I decided maybe we should stop the baby factory and be grateful with our two boys.
Up until 2010 I would have about 2 flares per year. Each flare would last about a month and I’d get prescribed prednisone 20mg and tapper down by 5 mg until i was off. In 2010 I did start to have more severe pain so my rheumatologist tried Imuran however It gave me really bad diarrhea so he took me off and put me on 40mg prednisone for 2 weeks and I tapered down by 5 every 5 days then he’d put me on prednisone every time I’d complain about pain but then in 2011 I got pregnant again. It was very unplanned as we thought we where done. I was in the middle of a flare and had just started 40 mg of prednisone when I found out I was pregnant but I told my high risk obgyn that I wanted to get off all meds during my pregnancy and I did. My baby was tested somewhere around 20 weeks to see if he tested positive for neonatal lupus and he did so I was also treated by pediatric cardiologist during my pregnancy and they did several ultrasounds to measure his heart and make sure his heart was developing correctly. They told me he ran the risk of needing a pacemaker at birth or carrying an infection that would make him be born with a rash and he would need some form of treatment for his skin at birth. They gave me so many horrible scenarios and I just remember crying and praying that everything turn out ok. At about 34 weeks I think they where able to tell me that his heart ultrasound looked good but there was always still a risk. With this pregnancy I definitely spent more time at the doctor’s having test and ultrasounds than I did with my other two but I had a peace of mind that he was ok. It was definitely a rough pregnancy and I had more flares than I did with the other two and I was much older but with this little guy I made it to 38 weeks, the longest pregnancy I had. I Gave birth to my last child one day before mothers day, on May 11th 2012. He was Healthy and so was I. We both came home 2 days later and then about 2 weeks after that i started the biggest flare ever! My newborn started having colic and problems sleeping and little did I know he had acid reflux and cow’s milk intolerance and it took us 7 month’s to figure it out. In those 7 months the stress and lack of sleep made my lupus flare. I spent a lot of the next year in and out of the hospital and then I ended up in a new hospital where I met my current rheumatologist and then I made the switch where I got a new medical team. I spent the next several months seeing all the specialists trying to get my conditions under control. I was at my rheumatologist and neurologist office all the time. My migraines had gotten worse also. My rheumatologist started me on methotrexate pills but they where keeping me in bed almost the whole week so then after a few months my rheumatologist suggested we try the methotrexate injections but that did almost the same thing. After discussing my options we decided to give benlysta a try.
Once I started benlysta I finally started to get some of my life back. I started my loading dose December of 2013 and I’m still on Benlysta today. I have been on prednisone almost the entire time as well, everytime I come close to coming off of it I end up with a bad flare and in the hospital.
July of 2016 I was put on medrol to see if it made a difference when i was discharged from the hospital after a week stay but then in October I was admitted again due to pain however a new rheumatologist to the hospital that didn’t know me took my case and she decided that my flare was not lupus but it was Fibromyalgia and although I disagreed she decreased my prednisone. I asked to be switched back to steroids over medrol and we started to taper down. She suggested I go to a pain management clinic to see if I was suffering from fibromyialgia. I made the appointment and they did diagnose me with fibromyalgia along with SLE with secondary Sjogrens and Raynauds phenomenon and severe Migraines. I was approved for the pain management clinic half day program for 6 weeks where they will teach me to live with the pain, yes they will teach me how to live with the pain.
My current medications are my Benlysta infusions every 26 days, plaquenil 200mg 2x a day, prednisone 20mg daily, 150mg Topiramate daily, cyclobenzaprine 10mg 2x a day, Restasis Eye drops 2x a day, Omeprazole 40mg 2x a day, Claritin daily, Vitamin D 50,000 units weekly, Lodocaine Patch 5%, Fluticasone 50mcg nose spray 1x per day, hydrocortisone cream for the face as needed, vicoprofen 7.5-200mg as needed.
My sister and I started walking with the Illinois Lupus Walk in 2011 and will continue as long as possible to raise awareness.
This is just a glimps of my story, I’m sure I left out a lot of important things and dates and events but I just wanted to give you all a glimps of my fight with this horrible disease.