Day 70. Bouncing Back

I'm actually feeling good today. I feel like the heavy Imuran blanket has been taken off. I think my body has got used to the last dose increase and I don't currently seem to be trying to fight off anything major. Sitting around being lethargic is not something I do well and I'm happy to be feeling my energy level coming back. I even rode bikes to the gym with the girls today and managed some light lifting and ab work. Still symptom free!

Day 69. Giving Thanks

I'm thankful for my kids. If it wasn't for them I would me a mess. They make me laugh when no one else can. They get me out of bed when I could stay there for days. They love me and need me, that is something to be thankful for.

Thank you girls for keeping me going and being the best daughters in the world! I love you Lily and Lucy!!!

Day 68. Refuse

I have been sick on and off for the last 3 weeks. I refuse to live like this. I'm getting about 2-3 days of feeling good between sicknesses. It's turning me into an agoraphobic. I'm starting to become a little obsessive about avoiding germs. I HATE this! I'm exhausted and drained. Today is a good day but I feel like it's just a tease. If there isn't a drastic change to my diffusion capacity in September I'm stopping the Imuran therapy.

Day 67.

apparently I don't have anything to say today

Day 66. some good amongst the bad

I got a letter from Group Health yesterday, they have approved my appeal for my visit to Dr Yazici in NY last month. The letter stated they are reimbursing my appointment cost at an "in network" level. I think this means they will pay for the $350 minus a $20 co-pay, YAY! However, any other consultation and appointments with Yazici will only be covered at an "out of network" level. I'm happy with this.

Day 65. Dr Russian....agian

Had an appointment with my Pulmonary doctor this morning.

Dr Russian telling me things I already knew......$20

Gas to drive to the doctor for nothing in return......$3.19/gallon

Discussion with Dr about whether or not the word "Behcet's" is French or Turkish......Priceless

On a serious note, Dr Russian still recommends that I have another PFT in 6 months from when I started treatment. From the limited literature Russian found regarding Behcet's and low diffusion capacity he doesn't think my lungs will get any better but will most likely not get any worse. He also received the information from Dr. Yazici.

"I don't like to be too optimistic so my patients aren't disappointed" (Excuse me...what?)

My CT scan was normal (we already knew that) and he wasn't surprised (neither were we). He got a hair cut and has 2 daughters (things we didn't know). Overall, I still like him.

BTW: Hulusi Behçet is the Turkish Dermatologist that Behcet's Disease is named after. 10 pts for patient!

Day 64. Tracks

Went and got my blood drawn today. I opted for the opposite arm then last weeks draw, you know, to mix it up a bit. "Dung" was the name of the guy who drew my blood today, no I'm not kidding. His name made me laugh and that put me in a better mood.

Last week I volunteered to help at my daughter's end of the school year carnival. I was an official 'carnie' for an hour. It was the first hour of the carnival so the kids were hot on the game trail. I was in charge of the toilet paper toss. Fun game but not in the blistering sun, thankfully I had a tank top under my long sleeve shirt. My blood draw from days earlier had left a nice mark in my elbow pit. I had forgotten about it until after I had already stripped down to my tank top.

If you know me personally then you know I can easily be mistaken as a drug addict since I truly am a little nutty at times, especially when I'm hanging out with a bunch of silly kids and throwing rolls of toilet paper at a toilet. I hesitated after I realized the bruise was there, for a minute I thought that my track marks actually complimented my new 'Carnie' roll but quickly decided to save myself the grief of gossip and put my long sleeve shirt back on.

Luckily the days of bi-weekly blood draws are getting close to being over.