Living with Lupus

My name is Jennifer and I am a 35 yr old mother of four,12,14,15,21, 2 boys 2 girls. My boys are adopted, and further in you will understand why I am telling you that. This all began a few years back with my younest daughter. She seemed to always be sick with something or another and noone could give me an answer, but I still persued sticking with my instincts.

Jan of 2009 it was finally made clear, child hood lupus Makes sense, I have many siblings with this same condition. Going with my gut again I had my oldest daughter tested, tested positive to the same test, the only difference, she has rheumotoid arthritis. I could not believe what I was facing but figured everything was going to work out. In June 2009 my youngest came down with her second most serious case of chicken pox. We made it through, even though it was so rough on her. Two weeks later I was being rushed to the hospital. I had been to my Dr. earlier that day as I had been feeling terribly dizzy but it was passed off as a virus and I was sent home. Four hours later the room was spinning out of control, I couldn’t move out of the fetal position w/o vomiting, I couldn’t hear out of my left ear, it was the scarriest thing I have ever went through, I thought.

A week later my best friend was driving me to some appts when all of a sudden I lost control of my speech, and the use of my left arm and hand, everyone thinking I had a stroke I remember laying in the hospital bed with her on one side of me and a nurse on the other recording into her cell phone my wishes for my children. A couple hours later my speech was back and my right arm, sent home. Going daily though for vertigo treatments and put on very high doses of steroids to try and save my hearing nerves, balance nerves, eyesight, I went legally blind as well. I was on so much medication it was crazy. My daughters gave their weekly visits up with their dad to take of me, changing my vomit pails, making sure I got my meds, ect. They along with my best friend were noticing huge changes in me, memory, concentration ect.

Due to their persistance with my Dr. I was finally referred to a neurologist, but the wait time was two months which put us into the beginning of Oct 2009. Finally being told that I was having partial complex siezures due to the virus spreading to my front left temporal lobe leaving me with brain damage. One thing I did not permanately lose was my eyesight thankfully, even though my eyes constantly still move I have somehow almost adapted.I will never regain my hearing or any of the other nerves on the left side of my face. I am still having siezures. The last I recall was halloween 2009, that was a bad one, not only losing speech and my right extremities, but also control of head movement, and some memories of the days events.

I am just now finding out that I am also having them in my sleep. My daughters stayed in my room one night as sometimes we do when watching a movie, and about 2 hours after falling asleep i awoke and needed something to drink and eat, but my oldest daughter was still awake and told me she almost called 911 because for about 30 sec I was having full body convulsions. The next morning after she awoke she also stated that on and off through out the rest of the night an arm, or leg would twitch a bit, stop, then start up again. I am on the max dose of keppra and was told at my next appt, the end of this month, I would probably be put on more. These episodes at night though would explain why I never feel rested and just out of sorts lately. In learning a little more about my siezures I see why it is so important to limit the amount of stress in your life. I have worked very hard to do that, but when you have three children still at home to support, job loss, an ex who doesn’t pay support and live in the state of WI, your pretty much screwed! Pardon the harshness. How can one not worry? If I were to sit down with someone and tell them the story of events that have occurred these past 11 months, they would wonder how on earth I have done it. It really is simple though, my children give me so much strength, and I have been trying to rebuild my relationship with God, and let me tell you, he has carried me so often thats its simply amazing.

I try to pray often, but lately it seems harder just because I lose focus so easily, even writing this is taking forever:) We need so many things