A Dreaded Cold

Well, despite my best efforts, I have caught a cold. Amelia has it too. I dropped my prednisone last Wednesday and started feeling bad on Thursday. I had a sore throat and a lot of congestion. I started coughing again. I never ran a fever so I thought I was having a Wegner's flair, but then Amelia's nose started running too and my stepmom (who I had been around the previous weekend) called and said she was sick also. On Monday, I called Dr. Awadh and he told me to increase my prednisone again and to stop the Methotrexate for the time being. He also preventively put me on a z-pack of antibiotics since I am such a high risk of an opportunistic secondary bacterial infection. I am still sick, but feeling a little better. Poor Amelia was up most of last night though. She is cutting a new tooth too. :(

Methotrexate Increase and a Prednisone Drop

I feel awful today. I am coughing some and congested. I have a headache and am exhausted. I dropped my Prednisone from 7.5mg to 6.0mg yesterday and I think it's effecting me alot. Ugh.

I've been on the Methotrexate 2 months and Dr Awadh has increased my dose to 6 pills a week. It makes me feel pretty nauseated at the start of the week (I take it on Sunday night). I also think it makes me moody, but I don't know if that is supposed to be a side effect.. maybe I'm just moody because I feel bad.

Goodbye Cytoxan

I should have thought about my pills a little longer before I took them this morning. It may have been the last time I ever take Cytoxan again.

I saw Dr. Awadh today and am happy to report that he is switching me from the Cytoxan to Methotrexate. My latest lung CT scan showed that both of my lesions had shrunk and I haven't had joint pain or other WG symptoms for months. I knew I was a lot better during this lung CT Scan. The last one was sooo hard for me. I kept coughing during it and could hardly hold my breath for the required 15 second intervals. This time it was a piece of cake.

I am very happy to be getting off the Cytoxan. I think I've been getting pretty fatigued and nauseated from it. I have just been feeling pretty icky the past week, although maybe that is from the augmentin. Luckily I am done with that now too. I am picking up the Methotrexate from Walgreen's tomorrow and will start taking a once weekly dose on Friday.

Ross started up his contracting position and all seems to be going well with his job. It is pretty nice to have things getting back to normal. The only real problem recently has been that either my mom or Jeff has been sick since I moved home. I haven't really been able to see my mom for a long time. She sends me emails all the time about how much she misses seeing Amelia and me.

Nails Again

I'm down to 10mg of Prednisone. Every week the drop makes me feel a little bad (headache, nausea) for a couple of days, but then I recover.

Although, I have actually been doing a pretty good job not biting my nails, one of them got infected again. My pinky nail broke off and I really don't even remember biting at it, but I must have. In any case, Dr. Awadh had given me refills on my Augmentin prescription and so I got it refilled. I've been taking it for over a week and it makes me feel pretty bad. I've been sick to my stomach and have lost my appetite some. Losing my appetite is a good thing I guess, since I've gained so much weight on the prednisone.

At least Miss Amelia has been sleeping though the night again. :)

Ick

Having some problems with the prednisone taper maybe. I dropped down to 15mg yesterday and have had a headache and been nauseated and fatigued all day. .. oh and cranky. Hope I feel better tomorrow. :(

Home Sweet Home

Well I finally moved back home today. We had been talking about moving me home really soon because my mom's back is better and my health has been really good. We had planned on getting the house cleaned up a bit first (Ross living like a bacholor had left in an unfit state for my standards). However, my mom started getting a cold so I thought it was prudent to get out of her house immediately. I spent all day packing up and driving home. I am exhausted, but thrilled to be back in my own house. It is going to take me while to get unpacked, and cleaned and organized, but at least I'm own my way to living my own life again.

My visit on Monday with Dr. Awadh went really well. He said that he thinks he will take me off of the Cytoxan next month (and probably switch me to Metholtrexate). My labs all look really good. There is no sign of inflammation despite the fact that I am now down to 17.5mg of Prednisone. I still have a runny nose and some congestion, but he said that he thinks the systemic Wegener's is under control.

I am now going to go lay my head down in my own sweet bed on my own sweet pillow (at least until Amelia wakes up and needs a bottle) and drift into blissful sleep. :)

Bad Week

My mom's back went out while we were in Boston. The doctor told her that she has degenerative disk disease and some arthritis. Unfortunately, she is almost bedridden and is on Vicodin and Valium to help with the pain. I am having a terrible time taking care of her and the house and her business and Amelia too. Tomorrow I am taking her to a spinal pain clinic. I hope they can help. Ross is terrified that I am going to wear myself out and get really sick. Frankly, I am too. I am so freaking tired.

Everything is so complicated. I am not supposed to be in crowds or around sick people
so when I take my mom to the doctor, I have to bring Amelia and sit in the car while she goes in. I drove around for 2 hours on Thursday waiting for her.

I am also losing some hair. It isn't noticeable on my head, but when I shower quite a bit is falling out. Ugh.

And Ross sold his share in his company on Friday and thought he was going to get a contracting position right away, but the new company didn't have an answer for him. I hope he hears something soon.

I am just so sick of our lives being so chaotic.