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!!!