Well, it seems my health is just not doing anything it wants too.  After a few weeks of reading through the study information, weighing what is best for my health and what is best for my family, and coming to terms with a change in "plans" must I say, the decision has been made.  I will be participating in the Clinical trial for ABT-874, just so long as I qualify.

Here's the plan:
At the end of October, we'll arrive at Wash U for testing on a Tuesday sometime.  We have to go on Tuesday in order to have results back on Friday.  We figured this might be the better way to go, set treatments up for Fridays.  We could set them up for Monday and shorten our initial stay, but then we'll have to miss work and bowling every 4 weeks.  So, we thought as a whole, it might be better to spend a Tuesday-Friday or Saturday and get all the testing done and approved, get a treatment, and then come back every 4 weeks on Thursday evenings and get the infusion on Friday and then we can figure out if we want to rush back on Saturday or Sunday.  Plus, we have some awesome family in the area, and we'd love to spend some time with them!

For now, I'm going to do a goal of 6 months, pending I don't have any severe with this drug.  In 6 months, I've decided that I will personally review what the study is doing to me, my family, and my future.  I posted earlier that this drug would NOT affect pregnancy, but it does.  I am not allowed to get pregnant for 60 days past my last treatment.  (It was 70, they just changed that.)  Apparently, the studies in Monkey's showed some sort of genital anomaly during the 2nd trimester that resolved in the 3rd trimester (Yes, insert total freak-out when I read that in the paperwork!).  It's not PROVEN that this will cause anything, and it was VERY slight, so how do you know if it's the drug or something else?  You don't.  Same situation with MOST drugs that are considered not safe in pregnancy. 

So, yes, I decided (and Charley doesn't have much choice but to agree here because I'm the one whose sick and me being sick complicates life in general - he's for me just getting healthy, period...whatever it takes, so this is what it takes), that we will postpone the FET or possible IVF.  In 6 months, I'll re-evaluate.  How do I feel?  Is this clinical working?  Is the driving to St. Louis once a month worth it?  Are the risks worth it?  How are the side effects?  Am I ready for more children now?  Can my body handle this?  Etc, you get the picture.  The study is for 2 years, 104 weeks from the first infusion.  But, I can opt out at any time.  So, if in 6 months, 1 year, 18 months or whatever, we decide, "Okay, it's time."  We'll wean off the ABT-874 (60 days) and onto something considered pregnancy safe, likely the Imuran (I know, I know - the drug I despise, but it might be my ONLY option left!), then we'll move forward with the pregnancy/infertility treatments.  Some good news?  Addy will be a little older.  I never REALLY wanted my kids so close in age, but I was willing to accept it if it had to be!  But, it will make the possibility of having twins again a little more easier to digest I think!  (again, thats JUST a possibility!!!)

It's a bit frustrating to say the least, but I just sort of came to terms with it this week.  The steroids are making me miserable.  I just moved myself to 30mg from 25mg and am contemplating moving to 35 or 40.  I have to call the GI on Monday to discuss this because I have to be on a steady dose for at least 2 weeks prior to my testing phase of the trial.  So, decision has to be made soon.

I'm just sick and tired of being sick and tired.  Working with the steroids has been tough, but I'm doing it.  Downside is my home is suffering from it.  I know, it'll be okay..we'll get to it all eventually, but I just feel like I'm falling behind a little more each day.  The good news is that getting up and going to work makes me FEEL normal.  It keeps my mind off the illness.  I do probably go to the bathroom a good 4-6 times a day, but at least I feel a little more productive then I was a few months ago.  I still just say a lot of my problem is the Prednisone/steroids.  They make me feel spacey and achy and just blah.  I have moon face again, my skin is greasy, my hair just feels a mess all the time, all I want to do is eat junk, I'm still having insomnia, but not near as bad because working actually wears me down!  But, once I start the trial in a month, then I can wean off the steroids rapidly.  And, if I'm the luckily one who gets the actual drug from the beginning, we MIGHT just MIGHT get to STAY off the steroids.  But, there's a GOOD chance they'll be with me through the holiday season... not enjoying that part.. I've already had to buy bigger clothes.  Disheartening to say the least...

But, all in all, we're moving forward and it's nice to have a plan again.  I just want to get better.  I have an opthamologist appointment on Monday, because if some of you remember, the last time I was on a decent dose of steroids, I developed slight cataracts.  Well, I've been on them over 2 months, so we're getting my pressures checked out to see if the steroids are affecting me again.  If they are, they'll give me eye drops to relieve the pressure.  Simple, but the drops dry out my eyes, so I'll get saline drops too eventually.  Then, on Tuesday, I have a check-up with the local GI.  Probably just to go over that we're stopping Remicade and moving onto the trial and they'll likely go over some things with me...same ol' same ol'.  And, then Wednesday, we're meeting with Dr. Gentry, the fertility doc, to discuss our new plan of action, since our scheduled FET for September was a no go because of my health.

So, I'll update more later, but since we finally got through the paperwork and I got my "head straight," so to speak, I thought I'd update my fellow blog readers!

Have a great weekend!  It's turning fall around here and I love that!