Day 32. Dr Yazici

I've been waiting a month to put that name in the title bar and it was well worth the wait because his reputation held true today. I had my appointment with him at the Behcet's Clinic at NYU today. I was lucky enough to have my amazing mother and sister accompany me in the exam room to meet with the doctor. Thank you Gina for recording the appointment on your phone. Mom took notes and paid the bill, thank you mom, I love you!

Here's the briefing:

I'm not taking enough of the Imuran to have it be beneficial and will be going from the 100mg's/day that I'm currently on to 175mg's/day. Increasing to 150mg's for one month and then on to the 175. I will need to do this for one year. Normal treatment is a 2 year period but he's satisfied with me taking a break in 1 year to get pregnant although he did emphasize that it may mean going back on it after evaluating my symptoms. 66% of the people that go on the 2 year treatment are symptom free forever when they come off, 33% are not and have to go back on the medication (depending on the severity of the symptoms that return). But, this is all at the mercy of my lungs. If in 6 months my PFT shows that they are worse we will revisit this treatment plan. If it shows to be improving then we will continue on the goal to stop the meds in 1 year for a baby break.

My home based Rheumie didn't do the correct genetic testing and it will need to be done again. He also didn't do the pathogen skin test so Dr Yazici did it today. I have to take pictures of the four skin pricks he made on my forearms in 48 hours and email them to him along with the new gene tests.

The following is why we flew all the way to New York to see this doctor:

"It is Behcet's"

"Behcet's is different in that it gets better with time especially in females that don't have eye disease" (we actually whooped, whistled and high-fived eachother when he said this because I don't have the eye disease associated with Behcet's)

"infection can tigger it" (just a little tidbit that I didn't know)

"Behcet's is pregnancy neutral" (my chance of having another still born is the same as anyone else)

Lungs...

"if it was aggressive it would have got worse in the time period that you were having other manifestations"

"it might be that something happened and this is a left over from that but it would be hard to make that argument since your CT scan was normal"

I have sooo much more to say but can't type anymore tonight. I'm feeling on top of the world today and loving NYC!!!

Day 31. Leaving on a Jet Plane...

Update:
We landed in Newark, New Jersey with a thud. It was my impression that we were blessed with a pilot in training. Then we had the traffic experience from hell. It took us 2 hours to get from Newark to New York city...and it's only 15 miles away. Our bus driver had a conversation with him self for most of the trip and honked his horn more then anyone else on the road. I'm guessing his brake pedal is feeling extremely abused and I'm just feeling grateful that we didn't end up with whip lash or that I didn't get kicked off the bus for ringing his neck.

Our first stop was Grand Central Station. The name for this terminal couldn't be more appropriate. The station immediately reminded both me and mom of Italy. But we didn't stay long because my sister was anxiously awaiting our arrival at the hotel. In fact I rushed mom so much she got a little caught up in the entry gate (don't worry, i got pics of it) We battled the rush hour subway and made it to Union Square which is five blocks from the hotel.

Got to the hotel and gave my sister a great big hug, it was awesome. She's everything I knew she would be. She even gave mom and I facials at the end of the night, thank you Gina! We exchanged pictures of our Dad and asked each other question after question. We have the same hands and she has our Dad's light brown eyes, she's beautiful and I love her.

Then off to dinner and the Empire State building. The Empire State Building was amazing but the woman that walked by me and said "boots in summer?" was NOT. So what if Iwas wearing some cute black leather boots at 11 o'clock at night? I was going "Jen White" style with a cute hot pink baby doll dress over some black leggings and black boots (my new "made in Italy kick ass leather thrift store" boots). The big problem I had packing is that the forecast called for thunderstorms/rain/70's/sunshine and anything else you can imagine. Where I come from rain = boots so I kindly screamed down the hall at the woman "it's spring not summer and it's night time"

Dr Yazici at the Behcet's Clinic at NYU at 9:30 am tomorrow. Stay posted!

All my bags are packed I'm ready to go
I'm standin' here outside your door
I hate to wake you up to say goodbye
But the dawn is breakin' it's early morn
The taxi's waitin' he's blowin' his horn
Already I'm so lonesome I could die

So kiss me and smile for me
Tell me that you'll wait for me
Hold me like you'll never let me go
Cause I'm leavin' on a jet plane
Don't know when I'll be back again
Oh babe, I hate to go

There's so many times I've let you down
So many times I've played around
I tell you now, they don't mean a thing
Every place I go, I'll think of you
Every song I sing, I'll sing for you
When I come back, I'll bring your wedding ring

Day. 30 Better

I'm feeling better today. I got a lot accomplished this morning. I'm excited about going to New York and having some ME time but at the same time I'm nervous to leave my family and house. Lily asked me if I was scared to leave. I wasn't sure what she meant but she explained that it was the first time Lucy was going to be staying the night at Daddy J's house. For schedule reasons Lily and Lucy are staying tomorrow night at Lily's dad (Daddy J) and his fiance's house. This is Lucy's first time staying the night there and Lily is worried about her falling asleep. She's such a sweet big sister. I reassured her that Lucy would be fine because she is going to be there to take care of her.

I wish my husband was going with me, I hate leaving him. I'm scared that he is going to go to the grocery store while I'm gone and fill the kitchen with CRAP!!! You better not David! I already saw the ice cream cone things in the big freezer...bad bad bad!

I'm feeling a little achy today, but no ulcers, no more diarrhea and the nasty fatigue isn't as bad as yesterday and my breathing is still good. The achy feels like the flu, I don't have the flu but sometimes my body hurts....similar to growing pains when you were a kid. I always thought it was the herpes virus but since herpes has been ruled out I guess the Behcet's explains it.

Day 29.

Can't think of anything clever for a title today and leaving it blank is just about perfect. Walked around aimlessly for most of the day in my pj's doing mindless chores. I even went and had my blood drawn in my pj's. For being completely exhausted I accomplished folding the laundry, a little vacuuming and making dinner. I caught what can hardly be called a "second wind" more like a "slight shifting breeze" after dinner and agreed to ride bikes to the gym with the girls for Lily's swim lesson (forcing me to get out of my pj's). It rained on the way home.

I'm supposed to be excited, I'm supposed to be packing and making a list of my lists, but I'm not. About the only thing I'm excited about is meeting my long lost sister, Gina. She is the oldest of our scattered clan and she's meeting me in NYC. At least it won't be a wasted trip since Dr. Yazici is going to tell me that Behcet's Disease is so unpredictable that he doesn't know what's going to happen if I stop taking the meds and doesn't know what's wrong with my lungs.

NYC is creeping up on me and I'm not ready. Eeyore...that's what today's title should have been.

Day 28...but I don't feel like it!

I need to go to the gym but I don't feel like it.

I need to go get my bi-weekly blood draw but I don't feel like it.

I need to go shopping but I don't feel like it.

I need to call the doctor's office but I don't feel like it.

I need to go pick up a prescription but I don't feel like it.

I need to take a shower and put on clean clothes but I don't feel like it.

I need to start packing for NY but I don't feel like it.

I need to do laundry and vacuum but I don't feel like it.

What happened to Prozac Wonder Woman?

Day 27. Giving Thanks!

Today is Sunday and it's my day to give thanks for all the wonderful things that have happened this week.

On the top of my "Giving Thanks" list is my CT Scan results that came in the mail yesterday. For the most part they are "unremarkable". I'm thankful there are "no pulmonary embolism" and "no aneurysm or dissection" and "no nodules". I actually expected my scan to come back looking good since the one from 2007 did also but it just continues to leave unanswered questions. My only complaint is a sentence in the "Findings" of my CT Pulmonary Angiogram (dye CT scan) says "The in the anterior mediastinum is likely residual thymus". Yes read it again, no I didn't make a mistake. There is a word missing between the first "The" and the "in". Not sure what the word is but it's just my luck that there is a misprint in my results. When I get back from NY I'll have the UW Pulmanology Dept review the CT as well. I'll also need to call Group Health Radiology tomorrow and ask them to fix their mistake.

This week I'm also thankful for my sweet Lily who had "plus" days all week! Lily, you told yourself all week that you were going to get pluses and YOU DID IT!!! I'm so proud of you. I love you.

Lucy is officially potty trained at 21.5 months old. I'm really thankful for that. Good job Lucy. I love you! Lucy's motto is "will potty for jelly beans".

Day 26. Laughter is Healing

I love to laugh and make others laugh. I'm sure there's been tons of studies done on humor and health but I don't need to research them to know laughter has power. I decided to share a joke today just for fun. The following joke is from an email I got today. Sorry... I don't mean to get political but it is pretty darn funny, so laugh and heal at the same time!

A woman in a hot air balloon realized she was lost. She lowered her altitude and spotted a man in a boat below. She shouted to him, “Excuse me, can you help me? I promised a friend I would meet him an hour ago, but I don't know where I am.”

The man consulted his portable GPS and replied, “You're in a hot air balloon, approximately 30 feet above ground elevation of 2,346 feet above sea level.
You are at 31 degrees, 14.97 minutes north latitude and 100 degrees, 49.09 minutes west longitude.”

She rolled her eyes and said, “You must be an Obama Democrat.”

“I am,” replied the man. “How did you know?”

“Well,” answered the balloonist, “everything you told me is technically correct. But I have no idea what to do with your information, and I'm still lost.
Frankly, you've not been much help to me.”

The man smiled and responded, “You must be a Republican.”

“I am,” replied the balloonist. “How did you know?”

“Well,” said the man, “you don't know where you are or where you are going. You've risen to where you are due to a large quantity of hot air.
You made a promise you have no idea how to keep, and you expect me to solve your problem.
You're in exactly the same position you were in before we met, but somehow, now it's my fault.