Long Time No Update
Yes, it has been a really long time since I have updated my journal. I am still having a lot of difficulty walking, but it has gotten somewhat better. I decided to stop taking Benlysta because it was not helping me and was causing nausea worse then I have normally. I have lost 30 pounds in about three months. I need to lose the weight and this makes me happy, but it is no fun to lose it in the way that I have. If it is not coming out one way it is coming out the other. I have to strategically plan where I go if I am feeling up to it because of the frequency in which I have to use the restroom. No fun!
I was put back on the medication that sent me into remission a few years ago. I quit taking it because there was such a high need for it. They ran out because they didn't make enough. It is called Leflunomide. It is for RA which I have, but I am taking it for Lupus. I have been on it for two months. It is helping with fatigue and a bit with pain. I am able to do a few things around the house now which is nice. When I get down I need to remind myself that I was praying to be able to do what I do now two months ago. I am praying that my liver enzymes are on point when I go back to the rheumatologist. If they are not, I will be taken back of the medication. After that bout with Methotrexate (chemo) my liver is a bit touchy when anything else is introduced. I am now on pain meds that don't filter through my kidneys or liver so that will help even more. They cost a fortune though. If I am taken off the leflunomide again the only thing that will be left for me to take is prednisone. I don't even want to think about that. I am just focusing on onward and upwards.
I am really looking forward to Christmas. I will be making my potato and Smoked Gouda cheese soup and gumbo. I will also be making my stuffed mushrooms. It will be a long day of cooking, but I enjoy cooking. I could do it all day if I could stand that long. All Christmas presents are bought which is nice. Morrigan doesn't believe in Santa anymore so we have a good majority of them already wrapped. Both my girls are going to be happy campers Christmas morning. I feel so blessed to be able to get my girls what they wanted.
Last night was difficult. I kept waking up and telling my husband how bad my feet hurt. At one point I woke up crying. I don't even get relief when I am asleep. I know this is a test, but I would sure like to figure out God's plan for me. I am getting really tired of missing out on life. I forced myself to walk Yumi to the park the other day. Since I have been able to do a few more things it really gets me down when I have to get back in bed because I am in so much pain. I feel like a carrot is being dangled out in front of my face and God allows me a bite of the goodness every now and then. I worked my anger out a long time ago, but since I have been able to do a little more I figured I was only getting better. Set backs really make me angry. It is just part of the process I guess. Well, I am off to go and create something. I need to work through anger and feeling sorry for myself. It sucks to be back in this place. Maybe I never left it.
I was put back on the medication that sent me into remission a few years ago. I quit taking it because there was such a high need for it. They ran out because they didn't make enough. It is called Leflunomide. It is for RA which I have, but I am taking it for Lupus. I have been on it for two months. It is helping with fatigue and a bit with pain. I am able to do a few things around the house now which is nice. When I get down I need to remind myself that I was praying to be able to do what I do now two months ago. I am praying that my liver enzymes are on point when I go back to the rheumatologist. If they are not, I will be taken back of the medication. After that bout with Methotrexate (chemo) my liver is a bit touchy when anything else is introduced. I am now on pain meds that don't filter through my kidneys or liver so that will help even more. They cost a fortune though. If I am taken off the leflunomide again the only thing that will be left for me to take is prednisone. I don't even want to think about that. I am just focusing on onward and upwards.
I am really looking forward to Christmas. I will be making my potato and Smoked Gouda cheese soup and gumbo. I will also be making my stuffed mushrooms. It will be a long day of cooking, but I enjoy cooking. I could do it all day if I could stand that long. All Christmas presents are bought which is nice. Morrigan doesn't believe in Santa anymore so we have a good majority of them already wrapped. Both my girls are going to be happy campers Christmas morning. I feel so blessed to be able to get my girls what they wanted.
Last night was difficult. I kept waking up and telling my husband how bad my feet hurt. At one point I woke up crying. I don't even get relief when I am asleep. I know this is a test, but I would sure like to figure out God's plan for me. I am getting really tired of missing out on life. I forced myself to walk Yumi to the park the other day. Since I have been able to do a few more things it really gets me down when I have to get back in bed because I am in so much pain. I feel like a carrot is being dangled out in front of my face and God allows me a bite of the goodness every now and then. I worked my anger out a long time ago, but since I have been able to do a little more I figured I was only getting better. Set backs really make me angry. It is just part of the process I guess. Well, I am off to go and create something. I need to work through anger and feeling sorry for myself. It sucks to be back in this place. Maybe I never left it.