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.