Day 86. Yazici's Response

hi, your white blood count is ok, needs to be monitored, if it goes lower I would decrease the dose. I think you should stay on the imuran as there is no guarantee we can get your lungs better even if you got back on the medication after pregnancy. I would suggest that you get pregnant on imuran, most of our lupus patients do and they do fine, there are small risks but the risk of losing lung function that can't recover, especially during pregnancy would be bad for you and the baby. I know it is not an easy decisions, I hope this helps Yusuf

Not much to say about this except thank you Dr Yazici for responding.

Day 85. Confused and lost

Went to see my Rheumie today. Our conversation didn't exactly go as planned. It never really does. I explained to him that I want to come off the meds in October to become pregnant and he looked at me like I had three heads. He suggested I stay on them for the pregnancy rather then come off. My last labs came in with a low WBC and he wants me to lower my daily dose of Imuran to 150. I left the appointment at a complete loss, went to my friends house and had a good cry. I just wish someone would tell me exactly what to do. I've spent some time praying for answers and direction today. Also sent the following email to Yazici in New York;

Hi Dr Yazici, I was wondering if you could offer some advice. I've been on the high dose of Imuran (175/day) now for about a month. My labs have all looked good except for the last white blood count which was 3.8. My Rheumie here wants me to go down to 150/day for concern of Leukopenia. Do agree with this?

I am also very anxious to come off the meds in October after my next PFT. I will have only been on them for 6 months at that point but I would like to try and get pregant sooner then later. I underdstand that the ideal Imuran treatment period is 2 years and that I may need to start on the medication again after we have a baby. My Rheumie here doesn't like the idea of me coming off the meds for pregnancy and has suggested that I stay on them. He is concerned that my lungs will become worse. My Pulmonologist doesn't seem that concerned. I reallly need some direction. I'm feeling really confused and lost. What do you think I should do? Thank you for any advice you can give me and I wouldn't be surprised if I receive a bill in the mail for your response... ;)

Sincerely,

Annie Van De Grift

Day 84. Too tired

sorry, too tired to blog today

Day 83. Giving Thanks!

Today is Sunday and it's my day to reflect on my week and give thanks. This week I'm thankful for all of you who actually read my blog and especially my friend Tami that keeps me on my toes. Thank you Tami for pushing me through my writers block. I'm thankful for my husband who never gives up and works like a horse to make me happy. I love you David. I'm thankful to the native Americans where I visited last week who shared their sacred and beautiful land with me and my children. Most of all I'm thankful for Lily who held my hand at the beach and snuggled with me. I love you more then you'll ever know Lily!

Day 82. Recovery

David and I spent last night talking about where we are in our marriage, what we need to work on and what we need from each other. It was a wonderful and much needed conversation.

Today we participated in the first annual "Whacky Wetatholon" put on by Adventures with Chad. It was loads of fun and it was great to spend some quality time with my husband. My Pulmonary doc told me that I wouldn't be able to run a marathon with my lungs low diffusion capacity but he never said anything about a Wetatholon! I did good but my chest was burning like crazy after the bike ride and the run/walk to the river's put in. David stayed by me even though I know he wanted to run more. Thank you David for being so supportive!

Day 81. Boring Blog

My girlfriend called me today and told me my blog has been boring lately. This is my bestfriend from school that admitted reading "the stupid thing about once a week" and was disappointed when "there hasn't been anything good on it" the last couple weeks. Gee, I'm sorry. I would be a liar if I told you that my blog is boring because my life has been boring. My life has been hectic and crazy. We had company from out of town then I left out of town. We had dance rehersals and recitals and PTA meetings, doctors appointments and orthodontist visits.

So Tami...here's some news for you.

My Depo shot has gone sideways and I've been on the last day of my period for over a month now. This has put a damper on the bedroom activities which puts both David and I in a rotten mood (I'm sure the additional hormones don't help). The developing bitter attitude has taken it's toll and we've been arguing a lot lately. The extra stress of has given me some ulcers. The nice thing about being on the Imuran is that the ulcers disappear as fast as they show up. Although it also bursts my bubble for the idea of having a 'Behcet's free' life after Imuran unless all stress factors are eliminated. That being said...I'm coming off everything in September. I honestly feel in my heart that this is not the right path.

The conclusion to the birth control malfunction issue is; I'm starting on a low estrogen birth control pill. Estrogen increases the chances of blood clots and since I have Behcet's I'm already at risk for clots. Why am I taking it then? I figure since the Imuran is killing the part of my immune system that causes inflammation (which causes clots) I should be safe.

No Imuran = No birth control

Day 80. Home

We made it home from the ocean. It was wonderful. We were lucky enough to join the local tribe in a drum circle and I can honestly say it was the calmest that the kids were the entire trip.

It's 6:30pm and I think I'll go to bed.

Day 79. Ocean

At the ocean chasing kids, praying and doing yoga on the beach...be back in a few days

Day 78. Ocean

At the ocean chasing kids, praying and doing yoga on the beach...be back in a few days

Day 77. Ocean

At the ocean chasing kids, praying and doing yoga on the beach...be back in a few days

Day 76. Giving Thanks

Today is Sunday and also Fathers Day. To all the fathers in my life that have contributed to raising me, thank you. There have been some special men in my life that have stood in the father role before and after my father died.

Luca, you are truly one of the most special men in my life. You took me to my first rock concert and have always loved me like I was your own daughter. You have been the man I can talk to when I've needed one, I love you and thank you.

Doug, you taught me how to cook, took me to car shows and taught me the things a father should, you would give me the shirt off your back if I needed it, I love you and thank you.

David and Justin...I couldn't ask for better Dad's for my babies. Thank you both for being wonderful and loving fathers.

Dad, I love you and miss you everyday. I thank God for every moment we spent together before you left me.

Happy Fathers Day!

Day 75. Testing 1 2 3

A friend of mine has told me that she is having problems with my blog page when she tries to close it. When she closes my page a ton of pages open up...is this happening to anyone else? Thanks for the input!

Day 74. Family

Not much to say today. Some of David's family are visiting from out of town and we spent a wonderful evening at BBQ with family.

Day 73. Break

I need a break. How much do you think a live in Nanny costs? This is not a request, this is a matter of sanity and homicide. I just want to be in my own house with out any other human for an entire day. Is that too much to ask for?

Day 72. Sunshine

Here are some interesting facts about me, hope it makes your reading experience a little more personal.

I prefer drinking my coffee out of clear glass coffee cups and sometimes I'll just pour it in a mason jar if I'm on the run. My yard is one of my favorite places to hang out and enjoy life. My favorite animals are humpback whales but I'd settle for a dog if David would let me.

I love rain showers as much as sunshine and would go camping in the snow if given the opportunity. I've traveled to Europe and several places in the US but my favorite state to relax in is Oregon where I was born, Alaska is second on the list. I usually drive my 1984 Volkswagen Vanagon all summer unless we need the AC, in that case we switch to the Mazda.

I hated high school and don't wish it on any teenager but I thought college was so great that I've been going on and off for 10 years. I don't listen to music in the car and prefer it be completely silent (this drives Lily crazy). I hate maggots, ants and pumpkin pie (in that order).

Well that's good enough for now, hope you enjoyed this tid bit.

Day 71. Follow Through

I've mentioned that I need a routine. I made one, printed off many copies and plastered it all over my house but apparently it needs to be on brighter paper. Anyways, here it is;

Things that you need to do everyday!

~Tell David you appreciate him and why
~Tell each of your children they’re special and why
~Mom and Lily time
~Mom and Lucy time
~Read with the kids
~Pray
~Eat food
~Take Meds and Vitamins
~Blog for the rest of the world to know you’re alive
~Read something inspirational and uplifting
~Smile
~Sinus Rinse
~Brush Teeth
~Stretch


Yes, sometimes I need to be reminded to brush my teeth. I know it's pathetic.

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.

Day 63. Reminder

I've been feeling frustrated with my blog, my purpose, my position etc. My husband has been making an attempt to read it but I think I'm expecting too much from him and the others in my life by assuming they even want to read it. Disease can be a real downer but I was lucky to be reminded of why I am talking about mine on a daily basis.

On Saturday, in the middle of a rough patch I opened my email to find the following;

"Hello Annie. My name is Holly. I just came across your blog tonight and have started reading it from “Day 1”. I look forward to reading all your posts. I am a 36 year old mom of three beautiful little girls. I have been sick for 4 years with no answers until now. I was finally sent to the Mayo Clinic in Rochester, Minnesota where I received a diagnosis of Behcet’s. I was on a search for others who are going through the same things I am going through and found your site. It feels so lonely when you have a disease that most people you talk to have never heard of. I just wanted to introduce myself and connect with others like myself. I will hopefully start treatment in the next few weeks when I follow up with my doctor back home. I am praying it helps. I also pray that you are doing well with your treatment. I am anxious to read the rest of your blog."

This gave me inspiration and encouragement. If blogging about my daily struggles is helping even just one person to feel like they aren't alone then it's all worth it.

I would love to hear more from other people with Behcet's so please comment whenever you want with input or questions. I know if I can't answer them someone else probably can.

~Thank you Holly for the reminder!

Day 62. Giving Thanks.

It's Sunday again!?!?

This week I need to thank my Mom.

Thank you Mom for everything you do for us. Thank you for working 40+ hours and then letting the me and the girls come over to invade your space on one of your days off. Thank you for your unconditional love and patience. Thank you for helping me at Lily's school carnival. Thank you for your inspiration and constructive criticism (even when I don't want to hear it). Thank you for taking care of Grandma and me and our family.

I love you Mom~~~

[~~~~~~~~~~~~~~~~~~~~THIS MUCH~~~~~~~~~~~~~~~~~~~~~~]

Day 61. Croup

Lucy (2 years old next month) has croup. We had to take her to the ER yesterday (Day 61) to get a breathing treatment and a dose of steroids. Her croup was causing Stridor and we weren't able to clear it up with home remedies so they instructed us to come in. My poor baby. She is doing much better this morning (Day 62. I forgot to blog yesterday...sorry about the confusion). The hospital is a scary place for a baby that can't breath and a mommy with a suppressed immune system. I am already starting to feel the on set of the chest cold that Lucy's croup was caused from and can just imagine what other nasty germs we picked up while there.

The last 2 months have been a big eye opener for me and realizing the lack of sense America has when it comes to health care. In France they still have pediatricians that make house calls. What a concept. The doctor comes to you eliminating the chance of infecting any other babies and reducing the possibility of us contracting something while we're already battling something. I guess this wouldn't help the pharmaceutical companies make their millions. Less illness means less money for them and Lord knows we can't have that.

New goal; Move to France

~

Day 60. Too much to handle

Crazy day....to much stress...literally felt my adrenal glands excreting there toxic fluid. Ended the day visiting with a friend, watching my Lily have fun.

Day 59. Example

This morning was a perfect example of how my life works most of the time.

Thursday morning is Yoga, except I haven't been in a few weeks. Last week I was sick. The week before that Lucy threw a fit in the childcare before I was even able to start the class and my friend who was supposed to meet me there for her first Yoga experience ended up being 10 minutes late. Which if you have ever done a Yoga class you know the first 10 minutes is detrimental. With Lucy throwing a fit and my friend being late we decided to bag the idea, pack up the kids and head to Trader Joe's instead.

This morning at about 8:30am the same friend sends me a text asking if I was going to Yoga. My reply "I should". She says she wants to go, so reluctantly I change my clothes, pack Lucy's bag and drop Lily off at school just in time to get another text from her saying that she can't make it because of an appointment she forgot about. My first thought; Awesome! I was off the hook so I headed back to the house to sit on my lazy ass in the morning sun and read my book. Got home unloaded Lucy and the bags, just in time to get another text that said "Oh no thats this afternoon I can still make it". Now I'm getting a little irritated but secretly happy about being held accountable. We load back up and head for the gym, again. I put Lucy in childcare, go to class and wait and wait and wait. I spend the first 15 minutes of class trying to be "centered" and "united" while constantly looking over to the windowed wall to see if she is peering in. In between poses I put away the mat I had laid out for her and try to refocus on my form.

Suddenly I realize that it's about time for the ladies in the childcare to come get me. Usually about 20 minutes after I drop Lucy off she starts freaking out, if not immediately. So I start looking out the other windowed wall, the one that faces the childcare door. Then I start laughing, it's dawned on me that this is by far the hardest Yoga I've ever done. I'm sweating, my legs are shaking, I feel like I'm going to puke and I may just even shart. Not because I'm not focused, although that totally screwed me up for the rest of the day, but our Yogini must have woke up this morning with a wild hair up her ass.

It's a good thing that my friend wasn't able to make it (she had to go see her mother unexpectedly). She would have been scared to death to go to another Yoga class after this mornings.

Day 58. Shout out!

Just wanted to give a shout out to my friend and fellow Behcet's sufferer, Andy Barwick. You can find his blog at www.andybarwick.blogspot.com and also keep up with him on his website www.andybarwick.com. I think Andy has a new voice dictating software so he doesn't have to suffer through the pain of manual typing. He might be updating more on the progress of his documentary and status of his Behcet's treatment. If you haven't read his blogs you really should. He sheds a completely different light on Behcet's Disease.

Always thinking about you Andy.

Day 57. Babysitting my healthcare providers

I'm feeling better today but I did get a nice headache from doing the 'doctor office verses insurance office' shuffle. Supposedly one sent the other something but the other never got it...bla bla bla. Now they only have 7 days to get my stuff over to them before my case goes to review. I love how GHC didn't put that in the letter I got in the mail today (it's a good thing I called them to get the REAL scoop). Actually the letter clearly states that they are going to need an additional 16 days to review my case. Liars, Cheats and Frauds...oh my!

Dealing with this situation is like adding two more kids to my life but really bratty kids that I have absolutely no affection for, okay so maybe it's more like two big stupid smelly obnoxious dogs that leave big piles of shit everywhere for me to step in. My insurance should realize that it would be a good idea to avoid crapping everywhere since it induces stress-caused symptoms which potentially cost them more money. Can I get some preventive care around this place please?

I have to say that my doc's office is the good kid/dog and my insurance company is definitely the bad one.