Post Edited (55555jlw) : 4/5/2009 6:33:16 PM (GMT-6)
Hi Jen and Marie,
Great Job!!! That's really inspiring. It's wonderful to see someone so young with such strength and faith.
I know exactly how you feel. It can be such a rollercoaster ride sometimes. I would really get her iron stores checked on this upcoming bloodwork. That's one of the most common problems for teen girls is ongoing anemia, especially when puberty hits. It could also be her blood sugar is down. Perhaps she is getting too much protein and not enough carbs, which are responsible for energy levels.
I'm sort of shooting blind here trying to make some suggestions. Her upcoming SBFT will tell you what's going on for sure, and if good news, will give you some reassurance, and your frustration should settle.
Take a breath. God will be there for you.
That's a really good analogy, and might I add, you're sounding better already. One more thing that I wanted to mention. You said that Marie had lost a couple of pounds, which as I had indicated could be a result of a low carbohydrate intake as well. Each gram of carbohydrate you injest, retains three times it's weight in water. That's one of the reasons why low carb diets became so popular, since the weight loss seemed so rapid. The trick is mostly water weight is lost. I may be missing the mark here, are you keeping Marie off of too much sugar and starch in her diet?
I don't know what to say. After reading your post, I could see that you're being tested with more than your share of adversity. No one is unaffected by this financial crunch we are in right now. I really hope that some other opportunities come your way. You're obviously doing the best you can and the Good Lord will certainly reward you for that. Things absolutely must get better for you.
The only other thing I could mention is, I know that 6mp/Imuran, can take about 3-6 months to reach their effectiveness. Perhaps the Doctor will suggest that you wait and see how the medication takes hold. As far as the Nausea, we were told at the outset to take Imuran at bedtime with food, as this seems to be a common side effect, maybe that will help Marie.
It really breaks my heart to hear where you're at right now. I can Totally relate to everything you're saying. There's nothing worse as a parent than to have to sit by feeling "helpless", as your child suffers.
What concerns me the most is to hear you say "hopeless" though. It concerns me because it's exactly the way I felt at times, and I used that exact word to describe things at some of our low points. We have to be positive and optomistic that there's better days ahead. Marie, (and Holly), have their whole lives ahead of them. There's always going to be hope for better treatment, medications, Doctors etc. As much as I feel as you do, at the same time I can't imagine that these girls will spend the rest of their lives suffering. I just can't believe that this is what God has intended for us.
I hope this doesn't sound like a motivational speech. I really don't want to sound like that. I used to view myself exactly as you do, solid and on top of things. It's easy when you have alternatives in front of you. When we sometimes get to the point where you're out of options, that's when it get's tough. I can remeber Robert Schuller saying, "tough times don't last, tough people do". I sincerely hope that this is the case for both of us.
P.S. Just re-reading some of your posts. Please remember to ask about an iron supplement, unfortunately, this too can take several months to reach it's peak effectiveness. Also, if the blood Marie is having is bright red, (Holly has that occasionally as well), I've been told that it's likely an internal hemmoroid, or maybe a mall tear from hard stool. When are you seeing your GI next? Isn't her SBFT coming up?
That's really good news!! Especially no strictures. You certainly have reason for "renewed hope". It seems that her symptoms aren't Crohn's related. I suppose we tend to forget about other viruses, flu bugs and such being so focussed on the disease all of the time. Please continue to post her progress.