Out and About

Today I drove myself to my labs while my mom babysat Amelia. It was sort of nice to be out alone for once. I have constantly had someone with me since Amelia was born.

It was also the first time I had worn my contacts in a long time. Boy was everything a lot clearer! I like them way better to drive in, but probably won't wear them most days because I want to be able to nap in the afternoon without taking them out.

My sinuses were pretty stuffy again today. At least the Sinus Rinse helps for several hours at a time. I can't believe I didn't know about it when I was pregnant. I was so congested. I really think my ob should have recommended it instead of just saline spray.

Ross is having a pretty hard time. His dad is back in the hospital because he hasn't been able to eat anything. Before my WG diagnosis, we had planned on going up to Boston at the end of August... I guess that less than 2 weeks away now so it doesn't look like we will make it. We were going to take a train, but I don't think public transit is a good idea while I'm on Cytoxan. Maybe we'll go up for Thanksgiving. I am worried about Ed and think we need to make a trip soon though.

Nail Biter

I really have to stop biting my nails! Ughg. I had quit for several years, but then started again when I was sick and pregnant. However since I'm on the Cytoxin and my immune system is being suppressed, it seems like a really bad idea to keep sticking my dirty fingers in my mouth all day. Not to mention that if I bite a hangnail and make it bleed, then I have an open sore on my hand. If I keep my nails painted I won't bite them, but how in the hell do I find time to paint my nails? Right now I spend all day holding Amelia. If she sleeps, I try to sleep. If she is happily playing for a few minutes, I am trying to make up formula for the next day.

Linda and my dad offered to babysit for Amelia once she was on a bottle and I am thinking about taking them up on that offer pretty soon. It would be nice for Ross and I to have an evening alone. I wonder if we could go out to dinner and actually eat in a restaurant. I don't know how much I am supposed to stay out of public.

I don't know how much I should be in public or not because Dr. Awadh is not very clear. He says one thing and then clarifies in a completely different way. At our last visit I said, "Since I am going to be on Cytoxin, should I try to avoid public places?" He said, "Oh no. It's okay for you to go out." Ross asked, "Then she can go to the mall and the movies?" Dr. Awadh replied, "Oh, well... no, no.. She shouldn't go to the mall." Ross then persisted, "Then the movies are okay?" Dr. Awadh said, "No, probably not the movies either." Alrighty then. So??? Where can I go in public if not the mall or movies? I will maybe ask my WG Yahoo group.

As for symptoms, my sinuses were bothering me quite a bit today. I got really stuffy and did my sinus rinse in the middle of the day (and actually did it twice in a row) instead of in the evening like normal.

The ball of my right foot is hurting too. I have had this happen before and I really think it is just from wearing my Dansko shoes for weeks in a row. I have asked Ross to bring my tennis shoes so I can switch it up. Hopefully that will fix things.

Good Weekend

It was a really nice weekend.

Yesterday morning Ross and I went back to our house and gathered up a few more things to bring to my moms. We also got my car so I will be able to drive myself to my labs. I am hopeful that I will stay feeling good enough to be able to do that. The Cytoxin has made me a bit nauseated everyday around noon, and I would say I have been getting progressively more tired each afternoon. However, I have been doing tons of Amelia's care on my own and have been really active, so some of my fatigue might be from that. Today was actually the first time I have had to nap in about a week.

Last night Robin and Adam came over and we had a fantastic time. They brought pizza. I made bubble tea and we talked for several hours while Jackie and my mom looked after Amelia. As much as I hated to quit breastfeeding, it was pretty nice for someone else to be able to feed her while I talked with my friends.

The prednisone is making my face look awfully round and fat. They call it 'moonfaced'. I am also getting more facial hair. Ick. Well, since dog training is out for a while, maybe I can apply for a 'freak' position at the state fair. I don't think that requires anything more strenuous than smiling politely at people.

Jagged Little Pill

I started taking my Cytoxin today.

I woke up and nursed Amelia for the last time. Ughgh. So sad...

... and then took all my pills. I have to take 3 Cytoxin pills because they are 50mg each and I have to take 150mg each day. I also have to take my morning prednisone, Bactrim, calcium and a vitamin. At night I take a prednisone and a Nexium. I can't believe how many pills I am taking.

I felt a little nauseated before lunch, but the Cytoxin didn't seem to effect me too much immediately. I am really tired right now too, but my sleep is so disrupted that it is hard to say what that is from.

I have almost gotten all of my medical records ordered. I think it's going to run me about $50, but other WG patients suggested that it is a really good idea to keep a personal record of them. Since the WG goes into remission and (hopefully) doesn't flair back up for years at a time, it is hard to remember what happened the last time. It is good to have a record of what led to what and what medication, tests, etc were ordered.

I have been pretty sad and moody today. I read that stopping nursing can bring on a bit of mild depression for a few weeks. It's hard not to get a hit of oxytocin every 3 hours. :) Anyway, as Ross said, "It isn't as though you don't have anything to feel sad about. You mood is in line with your situation right now. I agree. It's been a bummer of a day.

The Water Deprivation Test

Right now my excessive thirst is making me nuts. This thirst, drink, urinate cycle is causing more trouble than anything. I can't get any sleep and am tired all the time. I thought that the fatigue was the WG, but now that the prednisone has helped all my other symptoms I think the fatigue is from my disrupted sleep patterns. I go to bed around 1am and wake up every 60-90 minutes to drink and pee until about 4:30am when I pump (which I will stop doing shortly). I then go back to sleep from about 5:30am-8:30am, waking up once or twice in that stretch. It is really driving me crazy. Dr. Awadh thinks I may have something called diabetes insipidus (unrelated to the more common diabetes mellitus).

Today was really rough. I had to take a water deprivation test to test for the diabetes insipidus today. I wasn't allowed to drink any water after 3am until my blood was drawn at 9am. This was pure torture since I have a huge thirst problem. I drank a ton of water at 3am, but woke up at 5am and couldn't go back to sleep because I was so thirsty. I kept getting up every 10 minutes to swish water around my mouth and spit it out.

After the test, I saw Dr. Awadh to discuss the results of both it and my lung biopsy. Dr. Awadh said the labs did show I had diabetes insipidus and he has referred me to a nephrologist. He said that the lung biopsy showed necrosis, but no active vascultis. It was negative for infection so he wants to start me on the Cytoxin.

I am planning to start taking the Cytoxin on Thursday morning, which gives me a couple of days to wean Amelia over to a bottle. Sob. :(

Meeting Dr. Awadh

The prednisone has helped my arthritis vastly. I am able to move my hands and fingers again. Also, walking is easier although my ankles and feet still hurt somewhat. Stairs are difficult. I am too weak to walk very far with Amelia in my arms.

Saw a rhuematology fellow named Dr. Awadh (and his attending Dr. Lindsey) who asked me about my past history and said he thought I had WG also. Dr. Awadh ordered more blood work to see if the Prednisone had reduced the inflammation, my blood creatine level and other autoimmune labs. He also ordered a CT scan of my chest. He wants me to have either an open or VAT lung biopsy to confirm the WG diagnosis.

Although my urine test doesn’t show an elevated creatine level (meaning I may not have kidney involvement), Dr. Awadh suggested that I be placed on Cytoxin for 3-6 months and then switch to Metheltrexate. I asked if we could delay starting treatment for 2 more weeks so I could b reastfeed Amelia until she is 3 months. Dr. Lindsey said that I had been sick for such a long time that 2 weeks shouldn’t make much of a differnce. I scheduled an appointment for 07/30/07 to discuss test results and start treatment.

The CT scan of my chest was very difficult. I had to hold my breath while the machine was taking pictures which led to coughing fits. One of the techs said, “How long have you had that cough?” I told him I’d had it for about 6 weeks, but had also had it of and on for the past couple of years.