I was diagnosed with SLE Lupus a while back. It was a suspected diagnosis for years, although anyone with Lupus will tell you that an official diagnosis takes a long time to get. I have no idea why... I think it has to do with sunspots or alien life on earth. Just my guess...
I have been on high doses of prednisone along with a cocktail of other drugs for the past 4 months to combat all of the havoc SLE throws at my body. The goal has always been to reduce the prednisone or stop it completely, letting the other drugs control things. However that wasn't happening with me, and apparently long term prednisone at those doses is not very easy on the body. So the recommendation was to begin chemo - medium dosage, long term. Many different drugs were discussed, however my doctor decided to start with Methotrexate. I will be taking it weekly - forever, or until we find something better / with less side effects, that works for me.
I am thankful that there are options for treatment, unlike 50 years ago - however I am not thrilled with THIS treatment option. I started taking it during the week (Tuesday) and quickly learned that weekday dosing is not a good option for me. I spend at least a day or two sick, sick, sick, followed by a day or two of being so tired I cannot get enough sleep. This is followed by a day or two of normalcy - and then, back to chemo again. I did the second round of chemo on Friday, and felt ok all evening. Saturday was a mess. Sunday was better. Monday and Tuesday were DRAINING. Today I feel human again. This Friday I have to take it again. I hope this gets easier. The doctor added compazine for this round - which is supposed to help with the nausea. Although, initial research lists nausea and vomiting as a side effect of compazine - I have my doubts about its usefulness.
I am very lucky that what I have is treatable, that I am not facing a death sentence. I am glad that there are medicines available to treat SLE, and that I was able to get a diagnosis before my body was worn out and unable to recover. I am thankful for good doctors that know how to treat this disease, and I am so so grateful for my family and friends for being supportive while I whine and complain about the insignificant things going on with me. I promise to keep the whining down to a soft drone.
So - what does this mean in terms of me, what I do, how I live, etc? Apparently it doesn't really affect it much. I am still working full time, I am slacking at home, but luckily Todd is tolerant of my lack of energy and has been picking up the slack. I don't think I can take advantage of that forever though. I drink a little (although the medication doesn't really support that), and am starting to run again, although exercise has been difficult the past few weeks. I feel flabby and need to at least pick yoga back up again to have some sense of well being. I would ideally like to continue running and maybe get back into swimming - but finding the time is HARD. We are trying to eat well and keep life low maintenance, which is perfect for me. My biggest worry is work...how to spend the time needed on it to be successful without sacrificing my health and sanity. But - this is an issue we ALL face, isn't it?