Old Year

The last couple weeks have been busy. I haven't been very diligent about taking my Imuran which may be a good thing since the stress of the holidays always seems to drag me down and I end up getting sick. The extra antibodies were probably helpful. Unfortunately I've been back on track now for a few days and I'm getting the cold that Lucy just got over, tis the season for runny noses.

Looking forward to tomorrow. I haven't gone out for the new years in a very long time. My husband and I usually stay home, fall asleep by 11 and it's great. This year the kids have been invited to have a slumber party at Granny's. I figured Dave and I would stick to our normal tradition however, the more I think about shitty 2010 being over the more I want to celebrate. This year we'll celebrate the New Year by celebrating the end of the Old Year! Maybe a nice dinner and some dancing.

A day in the 200's

‎...some time the week before Christmas;

...church, shopping (bad idea), home, dinner, Scrabble game with David; 208-me to 207-him (apparently he's been practicing), oven caught on fire (apparently it's broke), cat started falling over (apparently she's sick)

I'm here...I'm HERE!!!

I've been busy with the holidays. I did a little traveling in attempt to get me in a more motivated mood and it worked. I came home from a friends house in Idaho with a new inspiration to join forces with my husband. For some reason we have always had separate rooms (but slept in the same room together). In some sense it makes sense (pun intended) because he works swing shift and it's easier on our family. The separate rooms has been causing me stress lately and I desperately needed a change. He was reluctant at first, he hates moving furniture...especially when stairs are involved.

I haven't been very good about taking my evening 50mgs of Imuran and I ended up with 2 huge ulcers in my mouth and some genital ulcers as well. It's just a nasty reminder of why I'm sticking with this shitty treatment. I have more to say but I'm tired. I hope you all are well.

Day 227 Shout out!

Thought it would be a good idea to point you in the direction of Joanne Zeis, she also has a blog called essential behcet's. You can find her newest post about flu shots at the link below and also on my blog under "Some sites for info on Behcet's" . I always find her reference articles very useful...Thank you Joanne!

http://behcets.blogspot.com/

You can also visit Joanne's website at www.behcetsdisease.com. Joanne states on her website that;
"Trying to find appropriate treatment is hard enough. Finding well-written, comprehensive information about Behcet's disease shouldn't be one of your frustrations."
She is spot on with this statement. Unfortunately I don't provide 'well-written, comprehensive information', however I will give you a good sob story anytime. Thanks to Joanne and everyone else that puts in the effort to help all of us sufferers. Did I mention she has written books on Behcet's? Make sure to check out the "Books" link on her website too.

From reading through the essential behcet's blog today I stumbled across a post;

From Cindy:

I have some good news for us all. Over the last two years I have been working with the VCRC (Vasculitis Consortium Research Center) to add Behcet's Disease to their database. Well I would like you to all know that this has now officially happened.

What this means to the Behcet's community....
- We can now register our names to be informed and included in any new research projects.
- Researchers don't want to take on rare diseases because it is too hard to find participants.
- With many BD patients on the data base, a researcher can then apply for more funding because he has a base of people to start off the study.
- Government funding is also more readily available
- Support groups can then help fund some of these studies.

It is SO very important that you register. It is just a short form which will take about 3 minutes to fill out. It does not hold you to participate in any study unless you wish to.

PLEASE take a few moments right now and join the registry. Let them know that Behcet's is not as rare as they think. With all of us registered, they will be able to see what a large group we have. Also send this to any others who have Behcet's Disease. It is not country-specific.

JOIN HERE: http://rarediseasesnetwork.epi.usf.edu/vcrc/registry/index.htm

So I registered...now it's your turn!

Day 226

My last post was a little dark and gloomy. Sorry about that. I decided to go off my Imuran last week. My husband and I talked at great length about it and decided it would be the best thing for our family. I feel outraged that I have to take this damn medicine. This is the time in my life when I'm supposed to be having babies and building a family. David and I both want another child before our youngest gets much older. If I complete the full two year treatment our daughter Lucy would be 5 before our last baby is born.

I went off the Imuran for 1 day then started back on it. Part of me is scared to stop it and the other part is desperate to stop it. I'm going to go back to my original goal of 1 year.

Day...whatever-222 I shouldn't ignore you

I'm ignoring you. I could say that I'm too busy or don't have much to say but I have lots to say and think about writing often. My mind is filled with things to write. I realized today that although my excuse for not writing has been "Maybe later when I'm feeling better", this is not the true reason. The real and true reason is because I'm scared to admit what is really going on. If I acknowledge it, I have to accept it. If I accept it I have to deal with it. Dealing with it means facing it and frankly I don't know if I'm ready to do that. Honestly I'm not even sure what "it" is.

What I do know is; I feel angry, ashamed, hurt, confused, bitter, jealous, lonely and scared. What I'm not feeling is happy and complete. The term "biological clock" never meant anything to me until now. Some women's is stronger then others and apparently mine is on steroids (just a figure of speech, I'm not on steroids right now and for future reference prednisone sucks ass). I also know I have the most amazing family and if it wasn't for unconditional love this would be a much different story.

Day... whatever "fine, good, nothing"

The three standard answers; good, fine, nothing

How are you? good
How are you feeling? fine
What have you been up to? nothing

I don't know what day it is on the Imuran count down. I'll figure it out later. I just wanted to touch base with the cyber world and update you. The rash on my arm turned into a rash on both my arms. It has since gone away but lasted for about 7 days. Something was going on with my eyes a couple days ago. Not sure what. I thought it was pink eye, minus the pink. They seem to be better today.

Day 189-198 Visit with Dr Russian

Saw my lung doctor Russian today. He's happy about the PFT results being almost normal. He had originally said that if my results came back with improvement I would only need to do a PFT once a year but he's changed his mind. Now he wants me to have them every 6 months while I'm on the Imuran. He agrees with Yazici that as long as the inflammation in my lungs is able to be controlled while I'm on the Imuran I shouldn't need to stay on it longer then the two year treatment. This is good news and we keep waiting.

I also got a flu shot today. Came home and had terrible diarrhea and felt sick. Hopefully this is temporary. I'm not looking forward to my first flu and cold season with a suppressed immune system.

I woke up this morning with a rash on my arm. Not sure why, maybe it's from the garden or maybe I'm starting a minor flare. No ulcers though.

Not really interested in leaving my house these days. Not sure why. Guess you could say I'm not really sure of anything lately.

Day 185-188 So Confused

I'm still battling. So confused about what to do. I saw my Rheumie last week (yes, the same one). He was very pleased about the PFT results and said he would like to see me continue on the medication. bla bla bla

Day 177-184 Today my control is in the paint.

Just having the knowledge that the readers who know me personally will appreciate this post is about the only thing making me smile today.

I feel like I've lost control over my life. Joke right? Yes but no. I've always been a little out of control while always maintaining a "take control" attitude. Crazy and sometimes unpredictable. Fun but possibly dangerous too. There are times when I'm content, at peace and happy. Then there are those other times when I'm just plain not. At some point in the last month I lost the control of my course.

I've lost control of my health and health care so my marriage, mothering and friendships suffer too? Everything is linked together and when one fails, it feels like everything suffers.

So what am I doing about it? For the last 2 weeks I laid on the couch. I had a nasty cold and used it as a wonderful excuse to do nothing. The Fall sun shined and the late blooming flowers showed their faces but I didn't enjoy them. I got up long enough to accompany my best friend while she delivered her 3rd baby, Sophia Jean Williams. I also helped another friend search for a different suffering friend. I spent an evening out at a Spa, I thought it might help but it didn't. However, what did help was paint. I started to paint the walls in my house. Color is amazing. Today my control is in the paint.

Day 171-76 Undeniable truth.

The question that seems to be coming up is "Now what, are you going to come off the meds?" I don't think so. I need to talk to my doctors. If my results had come back unchanged it would be a much easier to throw in the Imuran towel. I have a feeling the docs will suggest I stay on for the duration of the treatment (full two years).

This is probably hard for many to understand, but the results were a little sad for me. I'm not ungrateful that my lungs are better but the results have solidified my pulmonary Behcet's diagnosis. There was always a part of me that was in denial. "Nah, my lungs aren't really being affected by the Behcet's, it's a coincidence. It's actually residual damage from some kind of environmental exposure." The fact that my lungs have got better with this treatment makes for an undeniable truth.

Day 168 - 170 What was your bet?

If your bet was anything but BETTER you LOST!!! Yes, that means I lost too.

Here's my diffusion capacity history for reference:

2/19/07
DLCO 15.2
56%

4/8/08
DLCO 16.6
60%

4/3/09
DLCO 18.0
66%

3/29/10
DLCO 15.8
60%

4/6/10
Started Imuran treatment

9/22/10
DLCO 18.9
74% TODAY!

My DLCO is significantly better! My lung volumes are also up.

Life is good!

Day 163-167 'You've got enough breath to bitch'

What you first need to understand is that my life is filled with humor and sarcasm and I wouldn't have it any other way. David and I were having a discussion about my symptoms and my appointment next week. I was harassing him, telling him that he didn't even know I had a PFT next week because he doesn't read my blog. He explained that he lives with me and doesn't need to read my blog to know I have a doctors appointment.

"Yes, but how can you place a bet when you don't read my blog?" I asked.

His response was "Well my bet is that they are better. Besides isn't it obvious? You've got enough breath to bitch!"

I gave him some big kisses in between my fits of laughter after that little comment. I love you David and yes Sweetie, i will always have enough breath to bitch!

Days 156-162 No email

Well I got side tracked and didn't send myself an email last week. Trying not to think about it too much. Trying to stay busy with things and stuff to keep my anxious mind at ease.

Lucy is having trouble sleeping lately and it's making for some really rough days. I'm tired on top of already being tired.

I mostly recovered from my flare but have had a couple ulcers linger. I think part of the problem is that I went two nights without my evening 50mg Imuran dose.

Not much more to report. My PFT appointment is next Wed but I won't be able to see Dr Russian (Pulmonary) till mid October. No worries, I'll be able to decipher the test results on Wednesday.

Days 149-155 All bets are on

My oldest daughter is back in school and we are back to rubber boots and alarm clocks...bummer! Along with September also comes my 6 month Pulmonary Function Test. The calendar numbers show that 'Day 180' is October 2nd which happens to be a Saturday, oh darn. So I'm cheating a little and shooting for the third week in September (around Day 170 instead).

I called to make my appointment today and of course my doctor hadn't put in the order. It took me 4 phone calls to find this out. Now I'm waiting on a call back from the nurse. What a fiasco! Nothing is easy!

To keep things upbeat for the next couple weeks I thought it would be fun to play a little game. I would like to know what you think has happened with my lungs after 6 months of being on the Imuran therapy. This is very simple, for instance; Better, Worse or Same. Now, to eliminate myself the embarrassment of only having 1 person (my mother) comment on this post you can just send yourself an email with what you think the results will be. Then when I post the results you can forward the email to me and I'll post the winners (minus your email address)! How fun right? Make sure the original self-sent email is dated prior to my appointment. I hate cheaters ;)

I'm sending myself my betting email right now!

Day 146 - 148 Distraction

The last couple weeks have been filled with wonderful distractions. I haven't been feeling too anxious about my PFT that's coming up in a few weeks. I'm nervous for it but I'm also grateful that I been busy and will probably be busy until my appointment. I feel optimistic about it, if I was a betting woman (which I am) I would put money on 'no diffusion capacity change'. I would be happy with that, very very happy with that.

My house guests and catering last week made for some stress overload. I broke out in some monster ulcers. David was compassionate and understanding but also angry that the Imuran failed me for a minute. We also have to consider that having a house full of company and being on vacation included wine, sugar, little exercise and zero 'me time'. All these things are crucial to keeping my body and immune system happy.

We're at the end of summer these next couple weeks and today it's beautiful and rainy.

I'll be turning 30 in a couple weeks. Eek!

Day 137-145 Company

I'm still here...I just have company and it's great! My husband's son and his Mom are here from Germany. My Mother-in-law is also here from Eastern Washington visiting. We have had a fun filled week. I'll tell more later!

Day 133 - 136 Bad Blogger

I haven't been blogging everyday and the blogs I have posted haven't been very nice. Betawriter commented (thank you) on my last post about how he/she appreciated my positive outlook. I had to chuckle a little at that since the last thing I've been feeling is 'positive'. But...Betawriter and my new friends Joanne and Stephanie have given me a renewed sense. Joanne and Stephanie both have lung conditions associated with Behcet's. Neither are exactly like mine but I guess I'll have to settle for being special. I hope you all know that unless you tell me "this is confidential" I will openly talk about your conditions and symptoms...I guess I should have mentioned that before, huh? I'll wait until you send me a nasty gram before I say anymore with your name attached ;)....

I was talking with someone about my Imuran therapy and how it has been pretty good to me. Of course I will know more next month when I do a PFT, but the main point of our conversation was infection. They were concerned about taking an Immuno-Suppressant due to the possibility of infection and the fact that they are allergic to many different antibiotics. This was also a huge concern of mine as well when I first started taking it. I'm allergic to penicillin which rules out a large spectrum of antibiotics for me if I get an infection. Fortunately I have been lucky enough not to have any major infections. In fact, at my Rheumie appointment last week I pointed out that I was a bit concerned about it. I told him I thought I would be sicker then I have been if the Imuran was really suppressing my immune system like it should be. Now don't get me wrong, I have felt my body working to fight harder then ever since I've been on the Imuran but I guess I expected the worst, hoped for the best and got mediocre.

So does it mean the meds aren't working if I don't catch my death from a nasty bug? His answer was 'no', everyone responds different to it. He asked me if I'd been around 'sick people'. WTH? Of course I've been around sick people...I have kids and I actually leave my house sometimes. The meds have to be working right? My ulcers are gone (for the most part)!

Day 122-132 Smart Dumbass

I'm here. I'm breathing. I'm alive. I have been feeling pretty good since my last post. My back hasn't been hurting as often and my Behcet's symptoms are still non existent (thank you Imuran.) I had an appointment with my Rheumie last week. He was happy to hear that I haven't had any major oral ulcers since our last visit. He also addressed the baby issue again, the conversation went like this;

Doc;
Last time you were here you mentioned wanting to come off the Imuran to get pregnant.

Me;
Yes, but I talked with Dr Yazici in NY and he suggested if I want to become pregnant now I should continue to stay on the Imuran during the pregnancy.

Doc;
He said that? Really?

Me;
Yeah. Lupus patients take it during pregnancy when they have severe kidney disease so it's comparative right?

Doc;
yes, that is true

Me;
But I've decided this isn't an option for me. I don't want get pregnant on the Imuran, there's too much of a risk. But I would still like to eventually, after my treatment is done, have another baby.

Doc;
Why? Don't you already have two kids?

Me;
It's not your job to tell me how many children I should or shouldn't have! It's your job to make sure I'm taking the right meds!!!


end of THAT conversation.......

For being such a genius he sure is an idiot.

We also talked about my blood work. It's looking better lately which is REALLY good because otherwise he would pull me off the meds completely and that would be 132 days of crap down the shitter.

Day 116-121 Unbearable Frustration

I'm here. The count down seems to be going by quick lately which is nice, probably because I'm not still blogging everyday. My back is hit or miss, it doesn't hurt right now but that doesn't mean it won't in an hour. I get small bursts of energy a couple times a day and I'm able to do a little gardening, hit up a yoga class or go for a bike ride with the family. The consequence for this is complete exhaustion for hours afterward. My frustration with this new 'tired life' is unbearable sometimes. I suppose it would be easier if I was naturally a lazy person. Today I'm making a trip to the lab to get my blood drawn to check my white and red blood cells. I have a doctor appointment next Wednesday with my Rheumie. September is right around the corner!

Sorry I haven't been posting much lately.

Day 114 & 115 New mattress?

I've been doing too much and not resting enough the last couple weeks and it's catching up with me. I managed to go to Yoga this morning and Lucy even cooperated in the childcare. I had a difficult time doing some of the positions that I could do before with out any problems. I'm still waking up with a sore back, maybe I need to get a new mattress.

Day 109 - 113 I don't have anything to say

It makes me feel good that you care enough to ask why I'm not blogging. I'm sorry but I don't have anything to say except 'I am here'. I don't have any oral or genital ulcers. I'm exhausted by 3pm everyday. I can't keep up with the goals I've set for myself. I'm not exercising lately, Lucy can't stand the gym's childcare center so that doesn't help. My back is particularly sore and my knees have been hurting me. I'm not loosing anymore weight although I could stand to loose about 20 more pounds to be at a healthy weight for my height. Anyways....

As far as I can tell the Imuran is doing what it's been made to do. I don't know if it's working on my lungs or not. I won't know until September when I have another PFT (Pulmonary Function Test) done.

Day 106 through 108 Searching

I'm still here. Sorry I'm not very motivated to write much lately. I'm still searching for someone with Behcet's that has the same pulmonary disorder and still haven't found anyone. I did find a girl that is taking Imuran though. She isn't taking it for her lungs but she says it has helped with her symptoms and other then her hair falling out she is very happy with it. Luckily my hair isn't falling out but frankly I wouldn't be too disappointed if it did. My hair is really long and black, this time of the year it's super hot and in the way. Hope you are all having a great summer.

Day 99 through Day 105 My Limbo

Have you felt lost for the last 6 days? Anticipation? Concern? Confusion? Does this sound like an advertisement? If you've answered yes to any of these questions (minus the last one) you may be suffering from a severe case of 'My Limbo'. My Limbo is a terrible state of mind in which you completely lack a sense of direction. My Limbo is the product of not having answers or explanations to your questions. This is where I'm at.

Day 98. Realization

I was talking to a friend today about depression. We were discussing the importance of making the people around us happy. If I'm happy my family and friends are happy. It was the first time I actually said

"I had to humble myself and take prozac...didn't do it for myself, did it for the people around me because I love them and want them to be happy"

I had the realization that if I was alone in this situation I would probably be completely content being miserable, depressed and feeling utterly sorry for myself. But then again, who really knows what life for me would be like without my peeps.

Day 96 & 97 Giving Thanks, parties and 'stuff'

I've been busy the last few days with parties. I went to a baby shower yesterday and was supposed to make it to a birthday party also but wasn't able to do both. Today was another birthday party for my friends little girl. These little gatherings are great for visiting but horrible for my diet and I've been slacking lately.

I'm frustrated with myself because I want to be self sufficient once I'm off the Imuran. I want to be able to manage my disease without medication. I know this is the goal for many disease sufferers and many times it doesn't happen as planned but I have to at least try. I have been doing a little yoga daily at home but can't seem to get to the gym. There was a big chunk of time when I was first diagnosed that I secluded myself from many people in my life. It was sad and depressing but much easier to pay attention to what I was doing.

Today I got a little crazy. David and I had been discussing the 'stuff' that invades our life and space and by 'discussing' I mean he bitched about all my crap. He started to go through some of Lucy's toys and pulled out all the "baby toys" to get packed away. Lucy is turning two in 6 days and it was time to start going through stuff. I had a hard time with this and realized that I was boarder-line hoarding. In my manic moment I thought I would get rid of all the baby stuff and even my incredible collection of maternity clothes. What's the point anyways right? I talked myself out of it and decided to get rid of all the crap that's sitting around collecting dust.

This Sunday I'm thankful for God leading us to a great church. We've struggled with finding a church to call ours for a long time and I think we finally found one!

Day 95. Too hot

It's too damn hot to do anything...even blog.

Day 94. Tripoding

Here in the beautiful pacific northwest it got up to 95 degrees and it's not treating me too well. My body is achy, especially my knees, my breathing is the worst it's been in months and I'm crabby as hell.

David asked me last night how my breathing was because he'd noticed that it's been getting bad. I like to ignore it and I get a little frustrated when someone mentions it. A couple weeks ago Lily asked "Mom, why do you always do that?". I didn't know what she was talking about and replied with "do what?" She demonstrated it for me by slightly leaning forward, hunching her shoulders and then put her hands on her hips. This is called "tripoding", and I do it sometimes to get a breath. I've been doing it for so long that I don't even realize when I do it anymore. I didn't think it was necessary to give her that explanation so I gave her a the short answer "sometimes I have a hard time breathing and it helps".

Day 93. HLA

I forgot to post the results of my genetic testing awhile back. I do not have the gene that is associated with about 33% of Behcet's patients; HLA B51. The following is my HLA panel;

A2
A24
B13
B44
Cw5
Cw6

See what you can do with that.

Day 92. Something to do

I've decided that it's important to set some new goals for myself. It helps me to keep my mind occupied. I have some daily goals (which I've been failing at miserably lately) but I need some short/long term goals. For instance, I want to loose 6 pounds in the next 4 weeks, 1.5 pounds/week. I think this is a realistic and healthy goal. I also want to put in some new flower beds in my yard (pending energy levels). I also want to start belly dancing again (also pending energy levels). Not sure about the time period for the last couple goals but at least they're outlined in black and white now.

I've been feeling good lately. I lowered my dose of Imuran to 150mg's/day per the doctors orders. Not really seeing much of a difference. We had a 4th of July party this year and I enjoyed some drinks. The fact that I only had a few drinks and then don't remember anything for about 3 hours makes me think that Prozac and alcohol really isn't a good mix. Here's a small note for future reference; when the little label on your meds bottle says "avoid alcohol" they really mean it. Still recovering from that evening.

Day 91. Half way?

If I was going to stick to my idea of coming off the Imuran after 6 months yesterday would have been my half way point. I'm not sure what I'm going to do yet. I'm trying not to loose my mind thinking about it. I'm anxious for September to come around so we can see what's going on with my lungs. I feel like I'm being selfish by wanting to have another baby. Maybe I should just be grateful that I already have two beautiful babies. I just always thought I would have more kids. I guess life doesn't always go the way you plan it.

Day 90. Giving Thankss!

Today I'm thankful for my wonderful friends and family! Happy 4th of July!!!

Day 89. Lots to say

I actually have a lot on my mind that I want to share but I've been crazy busy. Had company visiting and I'm selling fireworks for a friend at his stand. Plus we are having a big party at our house tomorrow for the 4th of July so I've been getting ready for that. I'm just tired and over exhausting myself.

Day 88.

too busy to blog

Day 87. Just to clearify

I will never become pregnant on the Imuran. This is my personal decision. It is a class D drug and many women have delivered healthy babies while taking it, I will not be one of them. The risk to the baby is too great for my comfort level.

Back to square one. Bull shit!

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.

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.

Day 25. Dreams

My dreams have been really strange lately, or maybe I should say stranger then normal. Any woman who's had a baby knows that your dreams become bizarre when your pregnant. This is the first time in my life that my dreams are out of the ordinary without being pregnant. I thought maybe it was the extra stress or possibly the new medication but there are lessons to be learned with my dreams lately. My mind is talking to me and I need to listen.

The other night I had a dream that I was in a horrible flare. All of it at once, severe oral and genital ulcers, eyes hurting with blurry vision, a swollen red itchy rash all over my body and of course I couldn't breath. I woke up so relieved and grateful for the changes I've made in my life. I was proud of myself for the initiative I've taken in my quest for healing.

I normally love dreaming about my dad but last night was different. He was sick. I talked to him on the phone, he had just come home from the hospital and wasn't feeling well. The setting for my end of the phone conversation was my house, but my house was relocated to Oregon in the town where my dad is buried. The next day I called him again, he didn't answer but this time a woman did (typical). She told me he was really sick and couldn't talk or have visitors. I said I was going to visit him no matter what. I screamed and cursed her with every name in the book. I was fuming mad. I yelled at her about how I had to come see him because I wanted to get a picture with him before he died. I woke instantly and was completely heart broken.

My dad didn't die because he was sick, he was shot and killed when I was 15. He had been sick before with some kind of Colitis (inflammation of the large intestines) Possibly from Crohns disease or maybe even Behcet's. I'm not close to the Gorgita side of my family. I spent part of my summers in Oregon with my dad but we never talked about the families health history. (That's just not something you worry about as a kid.)

This dream meant a few things to me. One, I need to make a goal to learn more about the disease he had and the Gorgita families history. But more importantly was the lesson of selfishness. I wanted to see him to get a picture? What the hell is that all about? Why was I thinking about a picture, didn't I have a lot of other stuff to say and ask him? Or comfort him when he's dieing? This was a big eye opener for me this morning.