Day 56. "clever title goes here"

I'm feeling better then yesterday.

I wasn't supposed to have labs done until the end of this week but because I haven't felt good for a few days I decided to go to the lab yesterday afternoon and have my blood drawn. I told the nurse that I came in a week early because I've been having abdominal pain and excessive diarrhea for 3 days, she told me it would be better to go the walk in clinic so a doctor could look at my labs immediately. The good news is that my labs look normal (at least normal for someone taking Imuran). The bad news is that this may just be how life is until I'm off this crap. I'm hoping I caught a stomach bug and am just having a harder time fighting it off then normal because of the suppressed immune system. Except I have noticed that I'm waking up feeling good and then start to have issues after I take my first dose of meds. Maybe I should start taking the 75mg's in the morning and take the 100mgs at night. That might help.

I stopped taking the Colchicine today as previously discussed with the doctor...WOO HOO!! I've been on Colchicine before and I didn't respond to it. At that time I told my home Rheumie I didn't think it was doing anything for me and I was still having constant canker sores, but he thought it may need more time. I was on the highest dose (.6mg twice a day) for about 3 months before I stopped it due to getting pregnant, I never saw an improvement. He put me back on it after I had Pearl and now since I'm on Imuran, which I am responding to well, I can come off the Colchicine. This is per Dr Yazici's advise and I completely agree.

Day 55. Giving Thanks

Today is Sunday. On Sundays I like to talk about the week and what I'm thankful for. I don't feel like writing much today but I need to raise up my husband. David has been incredible. I haven't been feeling good and have spent a lot of time in bed the last few days. My lame state started to rub off on him and now he's battling some fatigue too and I think he might be feeling a little depressed. He's been the primary 'Lucy Chaser' the last few days and it can be a tiresome and lonely job when your wife is laying in bed.

David, Thank you for all your help this week. I'm sorry I don't feel good. I hope you don't ever resent me for being sick. I've heard so many horror stories about relationships being ruined from disease, but I know you are stronger then that. Thank you for your love and it makes me happy that you've started reading my blog. Thank you for making me laugh and being such a wonderful daddy and husband. I love you.

Day 54. Don't feel good

I don't feel good today, or yesterday or the day before that.

Yesterday morning our Masseuse came to the house for our bi weekly massages. She is a friend of mine from high school and has been teaching herself about Behcet's and my treatment to become more familiar with what areas I may need emphasis on. This week I had to take a break half way through our session to run to the bathroom for an explosion. She was great about it, when I returned she cracked a joke about massaging a certain area in my feet and triggering the problem. When I got back on the table and she started massaging my feet it actually made my stomach cramping and pain go away.

Later yesterday evening, I had dinner with a friend. We shared some chicken fajitas at one of my favorite mexican restaurants. I also splurged and had two glasses of red wine (got to have communion every once in awhile). The wine treated me fine but I think the flour tortillas and the extra grease was damaging because after the meal my stomach started to bother me again. I probably shouldn't have gone out to eat but I really needed to get away from the house and have some adult time.

To top it off I'm still exhausted. I'm spending the day in bed...again

Day 53. Routine

I need routine. I need to look in the mirror, focus, set a healing routine and follow through with it. A complete constant routine, from daily sinus rinses to nightly prayer.

Day 52. Reading Material

I mentioned before that I need to eat for my blood type but wasn't sure how. I've been doing some research and just finished a great book called "Eat Right For Your Type" by Dr Peter J D'Adamo and Catherine Whitney. I highly recommend it. There are items on my anti inflammation "Yes Foods" list that are on my Type A+ "No Foods" list, so it's a bit confusing but I'm working on a "Master Yes Foods" list from all the info I'm gathering. Went through the cupboards and cleaned out a lot of "No Foods" that are just tempting me. I'm also looking forward to listening to a book on tape that a friend is loaning me by Andrew Weil called "Self-Healing Strategies".

When I was in New York I met Aras Erekul in the Behcet's clinic's waiting room. He is a young man and also a doctor who has Behcets. Aras was there for his last appointment with Dr. Yazici before he left to move back to Turkey where he's from. Unfortunately he is no longer able to perform his medical duties because of the damage to his eyes and is redirecting his focus to Integrative Medicine. On the topic of Integrative Medicine he highly recommended another one of Andrew Weil's books called "Healthy Aging" but I haven't been able to get my hands on it yet. Aras mentioned that he has also found Yoga to be extremely beneficial for his Behcet's treatment.

Day 51. More results and symptom update

Got my test results for my recent (150mg of Imuran/day) blood work back. My white blood cells are back up to normal. My Glucose was slightly high, not sure what that means but the recommendations are to "continue with current medications and treatment plan". Yay!

This is Day 3 on the full dose of Imuran (175mg/day) and I have an oral ulcer and a genital ulcer, kind of a lame deal if you ask me. Doesn't matter cause they will go away. Breathing is fine. My body is sore and I'm getting sporadic achy bone pain. I'm tired but the rain is helping me stay rested.

That's all for today...going to back to bed now

Day 50. S M T W TH F S

Well my nurse friend emailed me yesterday after she read my blog entry to ask if I had talked to my doc about taking St Johns Wart with the prozac. I reassured her that I had and that I also talked to the pharmacy tech too. But then I thought about it, and I was wrong. I talked to the them about taking st johns wart with the Imuran when i first went on it. So now I've stopped taking the st johns wart until I talk to the doc again. Her concern is Serotonin Syndrome which apparently can be a bad deal.

I have a pill box. It has S M T W TH F S on it with a container for each day of the week (it's not rocket science) At first I thought this was supposed to help me remember to take my pills but it's become obvious that it helps me more with remembering what day of the week it is. At the beginning of each week the little boxes are filled with a cocktail of pills and vitamins, unfortunately the lids are getting hard to shut, I may need to get a bigger S M T W TH F S thingy.

I started on my higher dose of Imuran yesterday. 100 mg's (two whole pills) in the morning and 75mg's (one and a half pills) at night. The only meds I take at night are the 75mg's of Imuran (one and a half pills) well last night I opened the M box, tossed the left over pills from that day into my mouth, swallowed and walked away. Then realized that I had popped 2.5 pills not 1.5. Shit! What was the extra pill? Maybe a Colchicine or an additional 50mg Imuran!?!?! After I panicked, I called the 24 hour pharmacy and got reassurance that even if it was another 50mg Imuran I would probably be okay but to just pay attention to any changes in my body and call 911 at the first sign of something strange. I didn't have any problems and was able to finally fall asleep about midnight.

Lesson for the day:

PAY ATTENTION TO YOU'RE MEDS EVEN IF THEY ARE PREVIOUSLY RATIONED OUT IN YOUR LITTLE CONTAINERS.

What an idiot!!!

Day 49. The fog lifted for some divine intervention

Somewhere around 1pm yesterday the Prozac fog lifted and I realized that I was very happy laying in bed for the rest of my life and didn't care if the sun was out. Remember, I went off the Prozac 10 days ago because no one told me I had to make a follow up appointment with my doctor in order to have the prescription refilled, which pissed me off to no end and I didn't want to pay for or even go to another damn appointment (oh and I thought I didn't need it anymore). So after yelling at the nurse at my docs office I made an executive decision to go off it. Anyways, yesterday I was suddenly sick and depressed about the fact that I am sick and now depressed again.

If you look at Day 40. you will see an outline of my 'no prozac' theory. I saved you the trouble; "Prozac...I don't even think it was helping me anyways. I started taking it because I got really bad news about my lung disease and was super depressed about it. Now they are giving me good news so it makes sense that I'm not going to be depressed about it."

Well this all makes sense right? WRONG! cause the Prozac is gone and I feel like crap again. Just because my lungs aren't getting worse doesn't mean I'm not still sick. It doesn't mean I get to stop putting toxic waste into my body. It doesn't mean I can have a baby when I want to. It doesn't mean I'm not completely exhausted all the time. It doesn't mean I get to gallivant around like there isn't a nasty disease still lingering.

I'M STILL SICK AND I'M STILL DEPRESSED ABOUT IT!!!

So after realizing all of this yesterday I decided to call my dr first thing Monday morning and make the follow up appointment to get back on it, yes for the third time. Then I reluctantly put my shoes on and went to the drug store to pick up my Imuran. Guess what else was waiting for me at the drug store...the Prozac refill! My doctor must have called it in after I talked to his nurse 10 days ago. I had to laugh because I can just imagine the conversation that happened between the nurse and the doctor. They probably thought it was best to just give the crazy lady her drugs and not make her come in if she didn't want to. Divine intervention at it's best.

I'm using St Johns Wart as an anti depressant also. Many studies have shown it to be as beneficial as low doses of Prozac but sometimes the problem with St Johns Wart is that it can take up to 3 months before it builds up enough in your system to benefit from it. I've read that it's a good idea to take both until stable and then try it solely on it's own after a couple months.

My husband told me that he wished I would go back on the Prozac. If you know my husband you know this is unusual but don't worry he followed it up with a standard David comment "You should go back on it. It helps a lot of people. Although I don't think I personally would ever need to take something like that".

Day 48. Giving Thanks

This week I'm thankful for coffee and Danielle who makes rock'n cabbage rolls.

Day 47. Things happen for a reason

Went to visit baby Harper today. She is our new niece, she's 9 days old and super alert and beautiful. Within one hour of being around Harper, my daughter Lucy completely regressed back into a baby. Lucy is 22 months old, potty trained, talks on command, sleeps in a "big girl" bed and is one of the smartest toddlers I've ever seen, but she made a turn for the worst when she saw how much attention Harper was getting. All I could think about was how crazy my life would be if I had a new born right now. It was major reminder that God gives you what you can handle. Things happen for a reason and so far 2010 has been a big fat example of that. I feel a bit bad saying this but it's on my mind and I did promise to be honest. If we hadn't lost Pearl I wouldn't be where I'm at now with my disease and treatment, my health revisions and my focus to get well. I would be a stressed wreck. My health would probably be declining at a rapid rate and I would not be where I'm at today. Even horrible things happen for a reason.

Day 46. No Foods

To follow up with yesterdays post I've listed the NO foods today. You guys probably think I'm crazy but putting things in black and white is a good way for me to stay focused. I hope in the mean time you are benefiting from these daily reminders too.

No Foods:

Animal Protein (except for the fish listed yesterday:
~Beef (especially grain fed beef. Grass fed beef is high in Omega 3 and is fine in major limitation, 1 serving/week)
~Poultry (especially grain fed. Like beef poultry that is "pastured" is also higher in omega 3 which helps lower inflammation, "pastured" chickens are not given the antibiotics, growth hormones and normally are breeds that have not been genetically manipulated) 1-2 servings/week
Tropical Fruits:
~Pineapple
~Mango
~Bananas
~Papaya
White potatoes
Bread (lacking high fiber)
crackers
chips
sugar
Processed foods, Nitrates don't only promote cancer but they also cause inflammation.
Cheese
Vegetable oils
Hydrogenated oils
Alcohol
Coffee

Day 45. Yes Foods

As I mentioned before I'm cutting out a lot of things that are known to make auto immune diseases worse by increasing your bodies toxin levels. My auto immune disease (Behcet's Disease) causes inflammation in my blood vessels so now I'm adding foods and vitamins that can help reduce the inflammation naturally. Today is the list of "Yes foods". Foods that are either safe to eat or actually help reduce inflammation.

Yes Foods:

Salmon (especially Sockeye, wild)
Herring
Sardines
Black Cod
Soy Protein
Bean Protein
Whole Grains
Hemp Seed
Flax Seed
Cruciferous Veggies:
~Arugula
~Bok choy
~Broccoli
~Brussels sprouts
~Cabbage
~Cauliflower
~Chinese cabbage
~Collard greens
~Daikon
~Kale
~Kohlrabi
~Mustard greens
~Radishes
~Rutabaga
~Turnips
~Watercress
Spinach
Apples
Berries
Pear
Cherries
Asian Mushrooms: Shitake, Enokidake, Maitake, Oyster
Avocados
Walnut / Walnut Butter
Cashews / Cashew Butter
Almonds / Almond Butter
Dark Chocolate (in moderation)
Tomatoes
Winter Squash
Sweet Potatoes
Oranges
Tea (instead of coffee) but I won't do it..I won't give up my 1 cup/day!

Day 44. Tired, just so damn tired

I don't have much to report. I'm tired again. It's like a wave has washed over me in the last few days. David thinks it's the increase in the medication but I don't know for sure. I refuse to do any more research on Imuran as part of my self healing regiment. However I do remember being really exhausted about a week or two after I started on the Imuran originally and it slowly got better as time went on. Maybe my body is just getting used to the increase in meds. Maybe I'm tired because my body is having to work harder to fight off other viruses and infection. I don't know, but I do know that I could sleep for days if it wasn't for my little angels. Canker sores are obsolete. My body is a little more achy then normal but probably just cause I'm tired. My skin has been really sensitive to the sun but that seems to be better now that I'm off the Prozac.

On a good note; My nightly sleep sessions are way better. I seem to be falling into an extreme deep sleep now.

Day 43... 5 minutes to live

Yesterday I referenced a website www.butyoudontlooksick.com. Today I thought I'd share a funny story about the first time I heard "but you don't look sick".

I was at the nail salon treating myself to a pedicure. I was chatting with Judy who has been my pedi lady for many years. She asked me why I wasn't pregnant yet and I tried to give her the quick version; sick, meds, no baby for a year. Being the stubborn and ridiculously feisty Vietnamese woman that she is (and my friend for many years) she didn't accept my answer so I explained further; Behcet's Disease, lungs, auto immune, bla bla bla. Her initial response was the look of death. After I convinced her that she wasn't going to contract Behcet's from touching my feet and I wasn't going to infect her clientele, she said 'it', the famous; "but you don't look sick". It's like something that happens in the movies. She said those exact words in her vietnamese accent and everything "but you don't look sick".

I've read and heard other 'sick people' say that people say it all the time. But until someone actually says it to you you almost don't believe them. I wasn't even sure how to respond to her. What I wanted to say was "Well Judy I am. In fact I only have 5 more minutes to live, I may just drop dead right here on your salon floor" I restrained and just chuckled to myself and smiled.

Sorry to crap on your bliss everyone but I am sick, believe it or not.

Day 42. Tangible Spoons and such

I came across an article awhile back written by a woman that has Lupus, Christine Miserandino, it's called "The Spoon Theory". The spoon theory came about when Christine was trying to explain to her best friend what it felt like to have Lupus. I thought about it when I was reading Andy Barwick's May 9th blog post entitled "A Man Stranded". He talks about desiring a disease with tangibility and how he sometimes wishes he had cancer because people understand it and it needs less explanation. People don't doubt you when you have cancer. Not many can relate to Andy and Christine, but I do.

When I got my last lung CT Scan and got confirmation that it was unremarkable it wasn't surprising but still a little disappointing. I have a lung disease that is caused by another disease that the doctors can't see. They can't poke it with a needle or take a piece to look at under a microscope and then put in a jar to send down the road.

Behcet's has been called the "Master of disguise disease". It causes symptoms that can sometimes be seen but many times can't and their source is invisible. I would keep going on what it feels like to have a disease like this and how to relay the feelings to others but Christine and Andy have already done such a great job...Please read their thoughts at the below links. Thanks Christine and Andy for sharing!

http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/

http://andybarwick.com/blog/2010/05/09/man-stranded#comments

Day 41. Giving Thanks

Today is Sunday, the day I like to reflect on my week. This week I'm thankful for Life. All life; long, short, good and bad.

This week our baby niece was born, Harper Grey Van De Grift.

This week we celebrated my Grandmother's 97 birthday and our little neighbors 6th birthday.

This week a friend of mine remembered the day her son's life was taken 11 years ago.

This week I remembered my Dad. He was murdered 14 years ago. This week I heard new stories about him and toasted to his life. I'm thankful for your life Dad and while reflecting on it I realized that it's not always about what a person does or doesn't do while they're here with us but more importantly what someones life has left behind for others to benefit from.

This is also the week we would most likely have delivered our daughter Pearl if she had gone full term. My due date was next week but because I deliver my babies by cesarean she would have been delivered a week early, most likely on Friday May 14th. Her life was short. Pearl lived for 5 months in my stomach. I felt her wiggle in my tummy for 10 days before she stopped moving. We delivered her on January 2nd 2010. She weighed less then a pound and was 10 inches long. She looked like her Dad, she had his full beautiful lips and long fingers. She was beautiful.

This week I'm thankful for all the life that fills my home and heart. The life that runs strong around me and keeps my flame lit.

Day 40. More bullshit

Welcome to my roller coaster.

I'm down to one colchicine a day now (per docs orders) and zero Prozac. My prozac prescription ran out and for some reason didn't have any refills on it. Apparently I have to be evaluated after 1 month in order to get another prescription, which no one told me about. I ran out on Thursday and then called my doctors office on Friday after I went to the drug store to refill the prozac and they told me I couldn't. I made an appointment for next Wednesday which I later realized was ridiculous because by the time I go to my appointment I will have been off the prozac for a week and I'm not going to pay another $20 for that. Nor do I really want to be paying for another prescription every month. These damn co-pays are going to break the bank.

I was on the lowest possible dose of prozac so stopping it isn't a big deal (my doctors office said) and shouldn't experience any side effects. I don't even think it was helping me anyways. I started taking it because I got really bad news about my lung disease and was super depressed about it. Now they are giving me good news so it makes sense that I'm not going to be depressed about it. The prozac didn't do anything for my anxiety and I had to supplement with xanax, which I also don't think really helped. So the new plan of action is to attempt to treat my anxiety imbalance with natural remedies, yes once again. I will be making my first appointment with a Naturopath with the goal of anxiety resolution in mind.

Or I could just turn the basement into an apartment for myself and lock myself away from the world, then I wouldn't have any of the external influences that seem to cause my anxiety. But it is pretty dark down there and Vitamin D is one of my best friends.

Day 39. Letter to GHC

Members Appeals Department, May 13^th, 2010

PO Box 34593

Seattle WA 98124-1593

Attn: Appeal Coordinator

RE: Member Id 02197826

Please accept this letter as my appeal to Group Health Cooperative’s decision to deny coverage pertaining to my May 7^th 2010, doctor visit to Yusal Yazici MD at New York University’s Behçet's Syndrome Evaluation, Treatment and Research Center. I will outline below why I feel this appointment was necessary.

The doctors I have seen while being covered by GHC and also when I was not covered by GHC are unfamiliar with Behcet’s, a rare auto immune disease. My GHC primary care doctor and GHC pulmonary doctor have had no other patients with Behcet’s Disease, and I’m only the second patient that my Rheumatologist has seen with this disease. The Behcet’s disease is affecting my lungs, causing a rare pulmonary disorder. My GHC Pulmonologist Dr Russian rushed my last CT scan so that I would have the results in time for my appointment with Dr Yazici. My doctors were eager to have Dr Yazici review my medical records and to receive his opinions and recommendations.

I feel this appointment was extremely beneficial to my treatment. Dr Yazici explained things about my disease and answered questions that no other doctor has been able to. He also told me that additional genetic testing was necessary, and gave me the correct information to request. He did a pathogen skin test and had me email him pictures after 48 hours. He explained why it’s necessary to increase my current medication (Imuran) and how long I will need to be on it in order for it to work. He recommends I stop one of my other medications as it is not beneficial to my treatment. He recommends that I have another PFT in 6 months to review my lung disease. He is also faxing his recommendations to my GHC doctors. All of these services I listed above were included in the $350.00 that I paid out of pocket.

I’m not interested in receiving treatment or traveling to NYU on a regular basis but I would like my Group Health doctors to receive consultation when necessary. If I was to travel to see Dr Yazici again, the office visit cost would be $150 since I am now an established patient. I would like GHC to reimburse me for my initial appointment expense of $350.00 and agree to pay for any further consultation from Dr Yazici as recommended by my GHC doctors. I think this is a fair request considering I paid nearly $1200 in travel expenses and I’m not requesting reimbursement for my travel costs. I will no longer need my referral to the University of Washington Rheumatology Dept or to the University of Washington Pulmonary Dept. I have no doubt the cost of these appointments to the UW would have exceeded $350.00.

Thank you for your consideration in this matter. Please know we are very happy with the care our family has received through Group Health Cooperative.

Sincerely,

Annie Van De Grift

Day 38. Dental Care and Ulcers

When my mouth first exploded with canker sores I was at a complete loss. I feel like I need to explain again; these aren't cold sores (herpes) like some people get on the outside of your mouth, in the corners of your lips and such. These are actual chronic ulcers (Aphthous stomatitis), similar to you can get on your stomach lining or even your skin, but canker sores are ulcers inside your mouth and it's normal for everyone to get one from time to time. Sometimes you can get one if you bite your cheek or if you are overly sensitive to acid foods. In my case the blood vessels in my mouth are bursting because they are inflamed which causes trauma and results in an ulcer.

I can't eat or even brush my teeth when my ulcers are really bad. I discovered over time that normal toothpaste was not going to work for me anymore. Sodium Lauryl Sulfate or SLS is the ingredient in most tooth paste to help clean your teeth. It is an irritant and can actually cause canker sores for some normal healthy people. For people with Behcet's it's just painful and unnecessary. So I have used Biotene Dry Mouth for almost 3 years. It is directed towards people who have "dry mouth" (which I don't) but it's SLS free, low foaming and doesn't have that insane mint flavor that will send you through the roof if you have 20 ulcers in your mouth. I also haven't had any cavities since I started using this toothpaste.

I also highly recommend an electric toothbrush. This saved me from a lot of pain. Maneuvering a normal toothbrush around your mouth can be really painful. Having an electric one so you can just hold it in place while just the bristles move is really amazing and makes a huge difference.

Yesterday was the first time I went to the dentist and didn't have a mouth full of canker sores in a long time. It was really nice. When I have canker sores and need to go to the dentist I use my prescription Lidocaine. It's the same stuff the dentist uses to numb your gums before he gives you a shot. If you don't have any at home, ask your dentist to apply theirs to your sores before they start your cleaning. It's not very long lasting so you may need to have them do it again if they're going to be in your mouth for awhile. I also used this a lot when I needed to eat. Careful though, it works well and you can bite your tongue or cheek by accident.

Day 37. Revamp

Home life is good but David is starting to get a frustrated with the "healthy food" and the lack of beef. He told me that he hopes when all of this is over I'll start cooking unhealthy more often. My Behcet's will never be completely gone, I'll always have it but it can and will get better with time as long as I stay focused and healthy. I don't think David has grasped that this isn't a temporary change. It's a complete lifestyle revamp. I told him I had no problem cooking beef again but it had to be grass fed, minus growth hormones or antibiotics. He says okay but may change his mind when he sees the price.

I'm loving the box of fresh organic produce that we are getting every two weeks from Klesick Farms. We are also getting milk delivered every week. The nice thing about this is that it's keeping me out of the grocery store. I tend to get into trouble when I'm surrounded by delicious temptations, like frosted baked goods.

Thanks to Mom's great thrift store find we now have a bread machine so I can make our bread and sneak all kinds of fiber into it...ssshhh don't tell David it's good for him.

Listed below is a reference for Food, Inc. it's an in depth documentary about the American food industry and the American consumer, I highly recommend it. Like one of the comments on this site says "Everyone who eats food should watch this movie"

www.pbs.org/pov/foodinc/

Day 36. Labs and Appointments

Got my labs back from my last blood draw a week ago, my white blood count is back to normal. I'll have to continue with the bi-weekly blood draws to keep tabs on my liver while we increase the meds up to where they are supposed to be. I started the 150mgs/day of Imuran on Friday and so far so good, except I woke up with the beginning of an oral ulcer today. I think it may have been from the stress of flying and I'm sure it will be gone by tomorrow. I'm really excited to be able to stop the Colchicine in a month when I'm up to the normal amount of Imuran.

I have a doctor appointment with my home based Rheumie on Thursday to catch him up to date and have the correct genetic testing done. Dr Yazici is sending him a briefing of our appointment and his recommendations. I also see my pulmonary doctor next month to catch him up to date and schedule my next PFT for September.

Day 35. More Yazici

Dr Yazici also said that since I'll be starting on a higher does of the Imuran I can stop taking the Colchicine in a month. He briefly mentioned other medications but said they would only work for my ulcers not potentially improve my lungs diffusion capacity like Imuran hopefully will. The fact that he agrees with this drug option gives me a lot more confidence in taking it for next year.

He also said that Imuran is often taken when woman are pregnant but wouldn't be necessary in my case. Woman with Lupus that have kidney disease take it during pregnancy because the kidney disease becomes worse in pregnancy but since Behcet's is pregnancy neutral it most likely won't be a problem. If my lungs stay where they are now while I'm on the Imuran but become worse when I come off it in a year we may have a problem. The baby break is a small risk but I have confidence that it's going to be fine. I'm not worried and it feels great!

Just another little tidbit that I didn't know; Dr Yazici's father is a Rheumie in Turkey where he also specializes in Behcet's Disease.

Vacation is over and I'm back to the grind stone. Splurged while I was in New York and I need to detoxify my body again. Monday is a great day to start.

Day 34. Giving Thanks

Oh my! Where to begin....

Today I'm thankful for my Mother. Thank you mom for taking me to New York to see Dr Yazici. It made my heart melt when you cried after he told us good news. You are the strongest woman I know. I love you Mom and thank you.

Today I'm thankful for my Sister Gina. Thank you Gina for coming to New York to meet me. Thank you for loving me and giving me an increased sense of belonging and attachment. I love you!

Today I'm thankful for Dr Yazici and the Center for Behcet's Syndrome Treatment, Evaluation and Research.

Thank you Aras Erekul for talking to me in the waiting room at great length and being my first Behcet's friend that I've met in person. I hope you had a safe journey home to Turkey and you are going to do amazing things over there. Talk to you soon!

Thank you Kim and Justin for being a part of our big happy family and taking care of our babies while I was gone. I'm so lucky to have you guys. Justin, I really hope the corn kernel works it's way out of you sinus cavity ;)~

David, thank you for being the most amazing husband in the world. I can't believe my incredible Mothers Day present. It's beautiful! I love you.

Day 33...and then we celebrate

Our spirits were high today as we gallivanted around New York City. I was a bit more tired today then normal but I kept up and if you know my Mother you know this is a big task because she goes. I've always thought I'm fairly impressive when it comes to "going" and then I travel with her and I'm quickly reminded that I've got nothing on this woman. She's constantly leaving me in the dust looking like a lost puppy. Gina was a trooper though. She kept up great and it was nice to have someone to sit with while we waited for Mom to get her eye full. The highlights of the day; the 8 block festival/green market that started 5 blocks from our hotel (we shopped for at least 2 hours at this market). It was the most amazing street market I've ever been to (pics to come on FB). We also shopped on 5th Avenue, viewed the Flat Iron Building, the New York Public Library, then had an incredible Fondue dinner on Park Avenue and a late night stroll through Time Square. We laughed, told stories and celebrated life in a "wine, cheese and chocolate" kind of way. It was the perfect way to spend our last night together in this amazing city. Thank you Mom and Gina for a great day!

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.