Hi Friends!
I saw my main doctor -- Dr. Cohen, a rheumatologist -- today and I have great news! I am doing so well that my next 9 treatments will only be chemo (Cytoxan). I won't need to do the high - dose IV steroids anymore unless I have a recurrence of the lupus symptoms. I am thrilled, because 3000 grams of Solumedrol monthly makes you crazy and fat. And I get to taper off my oral Prednisone (steroid pill ) -- the one I hate because it gives you "moon face" and makes you puffy, but I've learned to love after it helped in my cure. At worst, I was taking 60 mg per day, and now I'm down to 10 mg. We have to taper completely off slowly -- 1 mg at a time or all the bad stuff could come back. So, it will take about 8 months to get me completely off Prednisone. But already, I see the lower dosage is nice as I've lost 11 pounds. I'm also off several more of my meds and now down to taking only 10 meds + all the vitamins and supplements my doctor has recommended. Anyway, Dr. Cohen was very pleased that I'm doing so well. And I'll go back and see him in 3 more weeks. He's asked me to bring Bill along so that we can discuss the typical course of this disease. For example, it usually attacks your heart -- so we need to be very proactive and try to stay one step ahead of this crazy thing.
So Praise God and Thank you for all the prayers. If you're praying for me right now -- I'm trying two new meds, ambien cr for insomnia (side effect of some of the other meds), and a new one for my mouth. My immune system even attacks my own mouth, so I've been dealing with a fungal infection there that won't go away for months. It's a little thing, but it is driving me crazy.
The doctor's appointment was at 9:30 this morning in Thousand Oaks, so Annie and I went after taking Nate and Isaac to school. After the appointment and getting prescriptions filled there, it was close to 11 a.m. We went and had lunch at SubContractor's -- very good and a whole vegetarian menu, so I loved it! Then we were off to Wal-Mart and on several other errands, which ended up taking the rest of the afternoon.
We got to my house and unpacked our stuff. Then it was time to pick up kids. I went to get Nate, Isaac, and Cam, and Annie went to get Molly and took her to her orthodontist appointment. We got home around 3:30 and had until 5 to get chores, homework, etc. done and be ready to go to Isaac's Christmas Program for school. So, it was a bit of chaos!
The Christmas Program was at Grace Brethren Church, and was for the K-1,K-2, and 1st grade classes. It was really cute. Annie came, and Judi came with her family. The program was very touching, and all 3 of us were crying. Isaac looked very cute in dress slacks and shirt with a tie!
We took video that we can share and lots of pictures that I'll post later -- because they're on Annie and Judi's camera.
After that Bill and Cam had to go to Scouts. Annie and I brought the other kids home and we fed them quick instant dinners because it was getting late. They're now all in bed, and I took my first ambien pill, so I'm thinking sleepy thoughts. I'll sign off now.
Much Love,
Michele
I saw my main doctor -- Dr. Cohen, a rheumatologist -- today and I have great news! I am doing so well that my next 9 treatments will only be chemo (Cytoxan). I won't need to do the high - dose IV steroids anymore unless I have a recurrence of the lupus symptoms. I am thrilled, because 3000 grams of Solumedrol monthly makes you crazy and fat. And I get to taper off my oral Prednisone (steroid pill ) -- the one I hate because it gives you "moon face" and makes you puffy, but I've learned to love after it helped in my cure. At worst, I was taking 60 mg per day, and now I'm down to 10 mg. We have to taper completely off slowly -- 1 mg at a time or all the bad stuff could come back. So, it will take about 8 months to get me completely off Prednisone. But already, I see the lower dosage is nice as I've lost 11 pounds. I'm also off several more of my meds and now down to taking only 10 meds + all the vitamins and supplements my doctor has recommended. Anyway, Dr. Cohen was very pleased that I'm doing so well. And I'll go back and see him in 3 more weeks. He's asked me to bring Bill along so that we can discuss the typical course of this disease. For example, it usually attacks your heart -- so we need to be very proactive and try to stay one step ahead of this crazy thing.
So Praise God and Thank you for all the prayers. If you're praying for me right now -- I'm trying two new meds, ambien cr for insomnia (side effect of some of the other meds), and a new one for my mouth. My immune system even attacks my own mouth, so I've been dealing with a fungal infection there that won't go away for months. It's a little thing, but it is driving me crazy.
The doctor's appointment was at 9:30 this morning in Thousand Oaks, so Annie and I went after taking Nate and Isaac to school. After the appointment and getting prescriptions filled there, it was close to 11 a.m. We went and had lunch at SubContractor's -- very good and a whole vegetarian menu, so I loved it! Then we were off to Wal-Mart and on several other errands, which ended up taking the rest of the afternoon.
We got to my house and unpacked our stuff. Then it was time to pick up kids. I went to get Nate, Isaac, and Cam, and Annie went to get Molly and took her to her orthodontist appointment. We got home around 3:30 and had until 5 to get chores, homework, etc. done and be ready to go to Isaac's Christmas Program for school. So, it was a bit of chaos!
The Christmas Program was at Grace Brethren Church, and was for the K-1,K-2, and 1st grade classes. It was really cute. Annie came, and Judi came with her family. The program was very touching, and all 3 of us were crying. Isaac looked very cute in dress slacks and shirt with a tie!
We took video that we can share and lots of pictures that I'll post later -- because they're on Annie and Judi's camera.
After that Bill and Cam had to go to Scouts. Annie and I brought the other kids home and we fed them quick instant dinners because it was getting late. They're now all in bed, and I took my first ambien pill, so I'm thinking sleepy thoughts. I'll sign off now.
Much Love,
Michele
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