Out and About

My mom and I went out to lunch today and then I spent a gift card I had gotten when Amelia was born for The Children's Place. I got 5 long sleeved onsies for her and a jacket to take to Boston. I figure it's going to be colder and I didn't think her summer dresses were going to cut it. We had a great day.

Ross had to work late tonight so I took Amelia over to my dad and Linda by myself tonight. I wanted to get over there and have them see her before we went to Boston so it wouldn't be a month between visits. They are over-the-moon about her. My dad was really proud because he was able to put her to sleep when Linda couldn't.

My dad also said he thought my moon face was looking thinner. I am down to 25mg of Prednisone a day, so that might be true. I hope so, but I think I look pretty fat. Ross calls me 'Prednazilla'. I am worried that about what his family in Boston will think, but being fat is better than being dead. :) I am happy that I haven't been suffering any ill effects from the Prednisone taper yet. People on my WG Yahoo board generally seemed to do well tapering until they got to about 5mg though.

Oh, and I'm doing really well with my nail biting. I painted them last night and they almost look normal again. I think they next time I paint them they will actually be looking good. :)

A Little Break

My mom watched Amelia while Ross and I went to Crown Center on Saturday and then to our brunch at Benton's on Sunday morning as an anniversary present. We had a really nice time, but I didn't feel great last night. I had a headache and was pretty tired, but it was still good to get away. Another problem was that I had forgotten my sinus rinse so I ended up getting really congested. In any case, it was very nice not to be eating with a baby on my lap. :)

Morning Prednisone

The Prednisone dosage drop and switch to morning only went fine. I was happy that I woke up without any joint pain or other major symptoms today. Supposidly it is much better on my adreanal gland to be taking the Prednisone only in the morning so I am thrilled that I can do that now.

Dr. Awadh Appointment

I saw Dr. Awadh today. My WBC is 6.8, which is still pretty reasonable. He is going to leave the Cytoxan at 200mg daily for another couple of weeks. I am supposed to drop the Prednisone to 30mg daily and switch it all to the morning dose starting tomorrow. I don't know how that is going to go. Last time I switched to taking my Prednisone all in the morning, I felt really awful. He said if I am miserable to do 20mg in the morning and 10 in the evening. We'll see how it goes.

Travel & Home

Ross dad is still doing pretty poorly. He can't keep down anything solid and is having another surgery to open his stomach sphincter on Tuesday. We have decided we are going to try to drive up to Boston to see him the last week in September. It'll be a really long drive. I am guessing it'll take 3 days each way with the baby, but I certainly don't want to fly because of my ears. Anyway, Ross and I like driving together. I am hoping we can do the trip for $600. Our Civic gets about 30mpg, and it is about 1500 miles... so that is 50 gallons of gas at $3/gal. $150 each way. That leaves us $300 for 4 nights of motels, food etc on the way. I think we can definitely do it.

Ross and I talked and talked about if Amelia and I should move back home. Since I am feeling so much better, we really think the biggest obstacle is my frequent doctor and lab appointments. I average about 2 per week and I really don't want to bring Amelia into the hospital with me. It would be a pain to drive from our house to my mom's to drop her off before going.. but I could do it. I am going to find out how late the labs are open at KU, because if I could go in the evening Ross could watch her. The other problem is that I really don't like to go out shopping because of my immune system. Currently, my mom or Jeff has really done almost all the groccery and other shopping for us. Ross would probably have to do that for us, but if I have the meals planned he would really only need to go Sunday afternoon or something. Lastly, I am always worried that as the Cytoxan builds up I will start to feel worse. Anyway, I am pretty sure we won't do anything before we go to Boston, but if I'm feeling okay I think we might try to move me back home right after our trip.

I have been doing a pretty good job of not biting my nails. I have some trouble not picking at hangnails, but I've bee getting better. My nails are getting longer and looking pretty good. Whoo hoo.. something good about WG. I'll have pretty nails! (Well, excpet I am pretty sure I am going to lose the nail off my previously infected finger... but I suppose it'll grow back.)

It's getting better all the time

I've been feeling so much better lately, which seems odd because they upped my Cytoxan dosage at the start of the week. I think I have been helped by the extra sleep, but I am also wondering if cutting the Cytoxan tablets in half last week was a bad idea. Once I started taking 4 whole tablets (instead of 3 1/2), I think my nausea subsided a lot.

My mom has been in Arkansas the past couple of days, and I have been doing fine on my own. In fact, I think I have been getting quite a bit more of my own work done (thank you notes, bills, etc) instead of helping her all day. :)

The endocrinologist office finally called to schedule an appointment for me. They can't get me in until October 29th. Isn't that crazy? I am so happy that Dr. Awadh actually started me on the vasopressin (actually it is desmopressin) before then. I live in such a highly developed country and despite a pretty high deductable, have good health insurance, but I can't see a doctor for 2 months. I can't see how socialized medicine could be much worse.

Feeling More Functional

My increased sleep seems to really be helping my functionality. I was able to do a ton of stuff today, even after Amelia woke up wicked early this morning. I feel much more mentally alert. I figure I'm getting a lot more REM sleep.

I am really contemplating if I am ready to move back home. Now that most of my WG symptoms have decreased, I am doing most of my own work at my mom's house. I am not really napping during the day anymore. I cook lunch and help with dinner, clean up after everyone a lot and have been doing most of our laundry. I also am helping my mom with her business now some. I feel that if I am well enough to be working with her, maybe I should be at home trying to get our stuff unpacked from our move and settling into our new house. It's hard though because I am worried I will get to feel worse on the Cytoxan. I am usually nauseated a bit in the afternoon, but not so much that I have to lay down. Since today was the first day of my new 200mg dose, I probably need to hold my horses and see how I am affected.

Sweet Vasopressin

I slept 4 hours in a row last night thanks to my new vasopressin medication. It was bliss. I went to sleep at midnight and couldn't believe it when I didn't wake up till 4am. I looked at the clock and was so happy. I am feeling really perky this morning.

Last week, Dr. Awadh called and said that while they couldn't get me in to see the endocrinologist any time soon, that he had spoken to him and wanted to go ahead and start me on the vasopressin. I take 1mg at morning and night. I think I can tell it is working for about 3-4 hours and then it wears off. It is crazy because for the first time in almost a year, I don't have dry mouth. I didn't even realize how dry my mouth was until it was fixed for a while each day.