In 1997, my life took a turn. How is it that I can have Lupus. Lupus was a disease that I heard about and people died from it. How is it with no family history do I have this horrible disease. It is one of those diseases that the medicines used to treat it are at times worse than the disease itself. A co-worker told me the day that I was diagnosed that her friends mom had it and it went to her mom's brain and she died. Lupus killed her. I had that in my head for so long and actually made the journey harder. It scared me, what was this thing that had violated my body and what was it going to do to me.
This disease over the last 14 years has defined me, ruled my life and kept me hostage. The ramifications of what it does to each body part at times make life so incredibly hard. In 2000, my doctor started me on steriods. These little pills do alot of good but wreak havoc on your body. Long term use causes weight gain along with a myriad of other unpleasant side effects. The dose at the beginning was 32 mg and throughout the past 11 years it has been a challenge to get me off of them. Easier said then done. At the beginning of the year I was down to 4 mg a day - it has taken me 2 years of gradual decreases to get down that far. So in April when we learned that Medrol was pulled off the market (no one knows why) I was thrown into crisis mode because I was going to have to get off of them and quickly. Well thank God my pharmacy had enough pills to take me to December but each decrease is only 1 mg at a time and every other day at that, I am finally at 1 mg daily. Each decrease brings pain, sickness and extreme fatique. Who would have thought that a little pink pill could have that much influence on your body. It is hard because it is taking me 4-6 weeks to get through each decrease. But I press on because I have to get 100% off of them. Lupus has been an enemy to me, brought things into my life that are physically, mentally and emotionally challenging.
Since being diagnosed, I have made friends with many who deal with the trials of auto immune diseases, tried to be supportive of others dealing with these issues and daily strive to not let this disease take me down. Some times are easier than others. Some days getting out of bed is a challenge and other nights the pain keeps me up. The medicines are there to help but it is tough. The journey is long, it is hard and sometimes impossible but I know with God's help each day I will make it through and my reward at the end of this life will be eternity with God and pain free. I am looking forward to that. In the past year, I have met others who are on this journey. At times I don't know what to say, I can only say that I am sorry to hear that because it is so unbelievably hard but with others walking along beside you, it somehow makes it easier. My prayer is that God allows me enough time on this earth to encourage others in their journey and let them see that life does go on and the disease is not necessarily the end of the journey but it might well be the beginning.