Peripheral Vision

After all of the poking and prodding that I have gone through, I think one of more unpleasant tests is totally non-invasive. It is a test of your peripheral vision. You have to look with one eye into a box and then press a button whenever a tiny dim light appears. This goes on for several minutes and is very stressful. I'm good at test taking, but I have serious anxiety with it. I am always thinking, "Did I really see that? Oh no.. Did I miss one?"

In any case I am happy to report that my peripheral vision is still okay. I have to have it checked every 6 months or so because my pituitary involvement. Apparently the optic chiasma is near the pituitary so they think the WG lesion might spread there. All is well for now at least. :)

Off the Prednisone

Whoot! I am finally off of the prednisone. I took my last dose in January and have been doing pretty good since then. Lately I have had some joint pain especially in my wrists and fingers, but Dr. W (standing in for Dr. A) didn't seem too concerned. Dr. A is having visa problems or some such and can't seem to get back in the country. He's been gone at least 4-5 months. They hope he'll be back by my appointment in May. In any case, Dr. W says that he will start dropping my methotrexate at the next visit too. I am excited about that so I don't have to be so worried about getting sick all the time.

I should mention that I've lost about 10 pounds since last summer too. It has been slow going, but I am keeping at it. I think it will be easier now that the weather is getting nicer and we can start walking after dinner again.

Dr. A Visit

Dr. A has finally returned from the Cleveland Clinic. I am really happy he was able to go. I actually felt like he was more confident and capable during my last visit than he has ever been before. He is thinking about specializing in Wegener's and even talked about working with another specialist from St. Luke's to do a study on Wegener's.

My foot x-rays came back normal as I expected, but I am still having quite a bit of pain at the end of the day. My labwork is looking really good as far as being in chemically induced remission goes. He is dropping my prednisone to 2.5mg, which is exciting. I can't wait to get off the prednisone. Also, he looked at some of my chloresterol numbers and they aren't too bad. My LDL is 108, which would be great if I was a normal person but WG is sort of a risk factor so he would like it below 100.

The only bad thing was that my weight had gone up so much. I have gained almost 50lbs in exactly 1 year. That is a frightning 1 lb per week. Now, I know that 1) a year ago I had a lot of unexplained weight loss from the WG so gaining some of that back was too be expected and 2) most of the rest of it is from the stupid prednisone, but now that my dose is lower I really feel that I should be able to loose it. I sort of think I have picked up a lot of bad habits in the meantime though. Since I am always hungry and never satisfied, I just eat because things taste good... which means I can eat an enormous amount of food without ever getting any signals from my brain that I'm full. Also, the diabeties insipidus causes me to obsess about drinking so I end up drinking alot of calories (Oh my gosh! I really need to drink a glass of pomagranate juice right now!) I don't fit into any of my clothes anymore. :( Well, better than the alternative, right?

Ear Ache

My ear has been hurting the tiniest bit and it is terrifying. If I didn't have WG, I wouldn't even think twice about it, but now it is so scary. I was at the store today and push the grocery cart with one hand and had some pain in my knuckle. I was like, "Oh no... is that the arthritis coming back? Is this a flare?" I live in this constant state of bodily assesment now. And it's sort of funny... it's not the ear pain or the Wegener's symptoms that I am truly afraid of. It is having to go back on the Cytoxin. I think I might actually refuse to go on it again. I might insist we try something else. Anyway, hopefully this is nothing.

X-Rays

I got my feet x-rayed yesterday. I'm not quite sure when I'll hear back from Dr. A about them because he is doing a rotation at the Cleveland Clinic (which is well known for treating
WG) this summer. I am thinking he might already be gone. If I haven't heard anything by next week, I'll have to call his office.

Irony

Of course, I woke up with a headache on Saturday. I know it was because I bragged about not having had one in so long... or maybe it was because I was up till 2am the night before. I didn't even have a good reason for being up so late. Ross had to do work so he was using the laptop while I watched the Tivo and I didn't really want to go to bed alone. At least it wasn't too bad of a headache. 1000mg of Tylenol and a cup of caffeinated tea seemed to do the trick. Luckily Ross was able to deal with Amelia for an hour or so while I pulled myself together. Otherwise I doubt I would have ever gotten functional.

One of the hardest things about having a baby is that you can't take a break. You don't get a sick day and ironically, I am sick all the time. It doesn't matter how much your feet hurt from arthritis or if you are vomiting or have diarrhea or something else God awful, the baby still needs fed (and changed and burped and entertained and and and and and...) I don't remember anyone talking about that before we had Amelia. Maybe for other parents it isn't quite as big of a problem because they are only sick a few times a year and not constantly.

Oh, and I'm starting up my methotrexate again tonight.

Headaches

I was reading over some of my past posts and was thinking that I hadn't had a headache in a long time. It occurred to me that I haven't been on the Methotrexate for over a month so that correlates about perfectly.