Temporary Insanity Day

Couldn't fall on a better day for me this year! Celebrate on Thursday by going temporarily insane with me!! (although, some would say I'm beyond temporary...)

a long story short (???)

HHHHMMMM..........to make a long story short......(don't I always start that way and never end up that way???)

G-PACT is going INCREDIBLY well. WOW. I can't even begin to go there. 19 days until the DDNC. I will get everything done, but it's definitely crunch time and I'm not getting much sleep at all! I love it though...it is so much fun to be helping people and planning a trip to represent such an awesome organization which I am not even biased about...;)

We have new volunteers jumping in left and right, there is passion in this field among patients especially who are so driven to find better answers. It's so way cool to see everyone coming together and fight for this!!!! It is a heavy weight on my shoulders at times knowing that thousands of people are looking to US literally, as the hope for them to get better care. But I love it. I love the responsibility and the love I have for all of these people I have never even met is so incredible!!! I hope to have the brochures and printed materials ready for the printer within a week and a half, preferably sooner to allow print and assembly time, and the website I would like to have up in a week. I think I can do it...I'm getting close as long as Pittsburgh doesn't interfere much at all.

Pray for-
trip to Pittsburgh this week. My mom and I are driving up Wednesday. We will either return home on Thursday of Friday, if all goes well. I STILL have some infection left after being on the max of two weeks of this antibiotic, so I am not sure what else is going on. Pray they can find a better treatment for it. I've had this going on since early November!

Sandostatin to continue to work! It is AMAZING the difference it has made!!!!

Me, for my stress levels as I am working so hard for G-PACT right now. Pray that my health will hold up, I'll get everything accomplished, and that I can still get a lot done from Pittsburgh...and that I won't get stuck there any longer than Wed and Thursday!

Finances to come in for some of the events we are planning

Karis to be able to fight this most recent infection

Thank you, and I will try to keep you posted as much as I can!

Busy, too busy, entirely busy, and insanely busy....

This will be quick because I have a lot of work to do!

The long acting sandostatin has finally kicked in!!! I've decided to go for it again! My next shot is due on Monday. It's so nice to be able to eat without injecting myself 3x/day, or having to eat within a 3 hour timeframe before it wears off. Now I can snack 24/7 and not have symptoms. I still have some occasional issues, but it's very clear that it has definitely started to kick in. I am so excited as this will give me the convenience of being able to eaat on the run and make traveling much easier!

I've almost finished G-PACT's GP brochure. Now I need to do the one for CIP. I took a break from the website for a little while out of frustration and realizing I need to get the brochure files done in time to get them printed for the DDNC. I'm overwhelmed with work, but making good progress. The growth recently has been amazing...our cause on Facebook has grown by over 250 people in the past few weeks, and I just started a petition group which reached 365 members in just 5 days!! I am getting contacted by people all over, all day, and late into the night. It's very cool to see the growth. It's in part due to Julie's death, in part due to my high publicity activity, and also due to the addition of CIP which draws in a whole new population.

Julie's family has requested that memorial donations be sent to G-PACT. I think that is really cool! She continues to contribute in spite of her death, and will continue to contribute in PR as we will share her story with others to indicate the need for better treatment options. She really made an impact and continues to do so. Her sister is now interested in helping us out as well.

Spunky is such a babe...he is always begging for attention. I wish I had more time to give him more attention, but I do play with him every day and talk to him all day. He just seems to get cuter and funnier every day.

Ben and Kyrie share b-days and we celebrated last night. I took tons of pics! True was his typical dramatic self keeping us all entertained! We also celebrated Celeste's b-day because it was on the third.

I've missed my Tuesday night Bible study all this year because I've been sick or busy. I hope to get back into it soon. Next Thursday I go back to Pittsburgh for my annual bone density scan, appointment with bone doc, Reclasp infusion, biopsy, and clinic...all in one day!!! It'll be nuts!!! Usually I go on Monday, but it's president's day and they won't be open. I got that messed up and am glad my coordinator called me about something else and they mentioned that...otherwise I'd be at the hospital at 6:00 am for biopsy on Monday...and if I'm not grouchy enough in the morning...u wouldn't want to be with me the rest of the day after that!! The good news is that since it's on Thursday I will be able to go to Life Group on Sunday night! I have missed Life Group so much lately because I am always too wiped out after church and kidMin, or have been in Pittsburgh, so I'm looking forward to getting back. I had already taken Sunday off because I got my dates mixed up, so I plan to just stay off and then have more resting time in the morning so I will feel more like going.

On a bad note, I developed a severe headache on Sunday or Monday and a lot of body pain...it kept me awake. Finally I decided to check my temp, and sure enough, the low grade fever is back. I'm not overly concerned because this just keeps happening so it's not anything acute...probabloy more autoimmune related given all the other symptoms that come at the same time.

Ok, gotta get back to work...I do need to find some time to sleep...I'm seriously starting to run out of fuel after so many 18-20 hour work days in the past two weeks...

Turning anger to passion

And yet again...my anger turns to passion as my best transplant friend, Karis, lies in the TICU at UPITT after a very difficult, 8 1/2 hour surgery. She was to have her ostomy reconnected, and while in there they discovered a very ulcerated small bowel pointing towards possible rejection or an infectious process. If it's rejection, it's not treatable and she is not eligible for another transplant. If it's an infection, it may or may not be treatable. They will know if the intestine is salvageable after the biopsies come back. She has been in the hospital most of the time since early November fighting fevers, bleeding, infections, seizures, malnutrition, and so many other complications. She's pulled through so many things so many times...I'm amazed at her fight, but not sure how much she has left in her.

This has fueled me even more. G-PACT is fighting even harder than ever to find better treatments for GP and CIP. This has got to stop. We have lost too many people recently to these devastating conditions. It's extra frustrating that there are options available, but the FDA is banning everything because a very small number have major reactions...and even those studies are substandard and not well substantiated.

I'm making a lot of progress on G-PACT. I have one of our brochures very far along which is encouraging and has helped me relax a little bit. I ran into some problems with the website...basically...our host deleted the new one. Fortunately, I have the files still. I just have to republish again. It still has a ways to go, but I am anxious to get it up because so many people are becoming so active and we need a more current site.

I am registered for the DDNC in March and have my train and hotel booked. I am very excited! How awesome it feels to be on the forefront fighting these conditions and knowing that in some small way I may be able to help save or improve lives in the future. I have an awesome team involved who are so passionately pursuing all of our avenues. We are especially bonded together after all the recent issues.

Please keep Karis and her family in your prayers. I believe in miracles...but sometimes this becomes so overwhelming. I take every single person I work with very seriously and personally, so every single death or new challenge weighs me down. In recent incidences, however, these people have been especially close to my heart and very good friends. Naturally, with each death and new complication, my fears for my own health and future are revived. While trying not to look to the past or relive the memories, and trying not to deal with the unknown of the future, it is challenging even to deal with the present right now.

Not much time to write at all...I'm very overwhelmed with the amount of work I have to do in the next few weeks. I'm also still dealing with Julie's death and it's hard to focus on my work, yet at the same time it's what is driving me right now.

I think the infection is finally starting to get better...thankfully. Hope it continues and that the side effects from the antibiotics go away soon!