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.

Living Arrangements

Today Ross and I went to our house and picked up quite a few things to bring back to my mom's. Since I am about to start Cytoxin, we figured that I would be living with her for at least another few weeks if not quite a bit longer.

If it wasn't for Amelia, I could be home without much of a problem. However I am so tired I get to the point where it is hard to keep functioning without a nap everyday. I am also physically pretty weak and can't carry her for more than a minute or two because my back and chest starts to hurt. Lastly, the amount of time required to care for makes it difficult for me to take care of myself... it's hard to eat something other than a granola bar and a glass of milk when I'm rushing to sit down and feed her. I miss being home, but before I came her I was spending all day trying to get her to sleep and then passing out as soon as she went down. I am worried that the Cytoxin will make me feel worse than I am now... and I will be here another 6 months until they switch me to something milder. We'll just have to wait and see.

I should mention that my sinuses were pretty bad today. I started feeling pretty congested
this evening. I did my NeilMed nasal rinse and that helped alot. My eyes are pretty scratchy, although my arthritis was barely noticeable today though. I was very tired, although I did a lot more today than usual.

Feeling Pretty Good

I am feeling better today. My chest doesn't really hurt in front anymore, although my back is still sore. My nose has been running quite a bit but I am not really congested anymore. I think the sinus rinse I am using is really helping. My arthritis isn't bad today either. Really only my left ankle is the only joint that is really bothering me.

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.

Visit with Dr. Staecker

My arthritis has progressed to the point that walking is difficult. I cannot straighten my elbows or use my hands well anymore. In the morning my mom or Ross has to help move me into position to breastfeed Amelia. I cannot scoot myself back into a sitting position on the bed or really even get her head in position because my hands and wrists are so weak and painful.

Saw Dr. Staecker who confirmed Dr. Burroughs assessment that I had WG. He contacted the KU rhuematology department and got me scheduled for a visit on 7/16/07. He put me on 20 mg of Prednisone 2x daily and Nexium. He also ordered some bloodwork.

Dr. Staecker also tried to scrape the middle ear effusion out of my left ear which caused me so much pain that he had to stop. He prescribed Floxin drops to loosen up the debris and scheduled a follow up visit in 1 week to check on it.