Inner beauty and strength

A friend send me the link to this video of Susan Boyle, Britain's 2009 You've Got Talent Singer. http://www.youtube.com/watch?v=9z0h1NNk1Ik. She is an example of how outside appearance doesn't say anything about what is on the inside. Although initially viewed as being incapable of singing due simply because she is not outwardly beautiful by many people's standards, it is clear she not only did she captivate Simon and the other judges, but stunned the audience members who were so disgusted by her outward appearance in the first place. Our society places too much emphasis on looks when considering ability, potential, intelligence, and work ethic.

Living in a world where I am surrounded by chronically ill and disabled people, and being one myself, I personally understand the perceptions that come with not appearing as one should, according to society, in order to be successful. At times, because of my size, limitations, and physical weaknesses, I am looked upon as incapable of being able to accomplish very much or make much of an impact so not much is entrusted to me without my own personal pursuit of something. This is true of my friends and colleagues who have health issues, many much more outwardly blatant than mine. But if you truly look beyond outward appearance, you often find more someone more beautiful than anyone you have ever seen before. Those who face certain limitations and obstacles in life are often the one's who have the most to contribute and are the most beautiful. Some of the greatest success stories come from those who have been socially outcast or looked upon as being weaker than others and incapable of contributing much, if anything, to the world.

Today I was at the grocery store and ran into a guy working there who completely made my day more than anyone else there. He's clearly somewhat mentally challenged, but he was so happy to do what he was doing and so proud of his work. Even though his only job is to collect the baskets from the carts outside and bring them in, he boldly stated to me as I was walking out the door "look at these baskets, don't they look so much better!" after having spent a good deal of time straightening them out and making sure there were none out of place. As we walked out of the store, my Jeep alarm, which is finicky, started to sound from a distance as another car drove by. He laughed, shook his head, and said "it's still going off. Annoying sound!" When I informed him that it was mine making all that noise, he laughed again and said "it's an annoying noise, isn't it?"

He then ran off to grab another cluster of baskets to take into the store. I imagine that no "able-bodied" person according to our society's standards would do half as good of a job or be nearly as proud of the finished product as he was and be so happy just to have the opportunity to be there doing it! In many instances, he has probably been blown off by others as not having the ability to help based on his outward appearance, but I know if I had requested his help in getting my groceries into the Jeep he would have happily taken me up on it and done better than anyone else who has ever done it. He has probably been seen in the past as being unable to contribute much to the world because of his limitations, yet he certainly made a big impact on my day! If not just the inspiration that came from the pride he took in his work which some would see as insufficient or unimportant, his whole attitude and friendliness was captivating.

Cool, but crazy madness!

Yikes...two weeks since I blogged??? I've been crazy busy!! I've been working at least 16-18 hour days for 8 weeks to get ready for the DDNC. It has paid off! The new website is launched (www.g-pact.org) and all our graphics work is done and arrived on Monday! It looks very professional and impressive! It's nice to have that all behind me and know that now I only have to focus on packing and other little details before Saturday. I'm leaving on the train at 1 PM Saturday and returning around 2:30 on Tuesday. I will be staying in the hotel on Monday night because I couldn't get a train back to Harrisburg late enough so I will relish in the night away from home without any major stressors! It will be a sweet, too brief, vacation!

I'm STILL battling the infection I developed about four months ago. It seemed like it was getting better, but it's come back...I'm really frustrated. I'm scheduled to go back to the doctor on Thursday for it. I am also scheduled for my annual infusion of reclasp (osteoporosis med) and am still receiving aranesp every week. In spite of that, my hematocrit was very low in Pittsburgh during my last trip and I ended up needing another blood transfusion. We just don't know what's going on...I'm getting a mega dose of Aranesp every week and in spite of that my levels keep dropping. We aren't sure where it's going, but Kareem suspects my bone marrow may not be producing enough red blood cells. At least I am not as wiped out as I should be considering...but that may all hit after the hubbub of G-PACT activity is over.

After the DDNC, I will start focusing on DDW. This won't require NEARLY as much work because we have already been working on it for so long and because I have the graphics work pretty much done now. Those were my biggest projects.

March 13 marks my third transplant b-day. I am celebrating with a group of friends that night. I'm amazed it's been three years and that I have come as far as I have. Who ever knew I'd be back running G-PACT so much and traveling to major events on my own? It's really amazing...

Please do pray for me though this weekend. Since this is the first major G-PACT event I've been involved in since 2004, I'm a little bit nervous about how I will hold up physically. It will be a test for sure as these will be really long days of sitting up and walking without many breaks. It's definitely going to be a test for me...

We have some new, incredible opportunities that opened up for us in DC. I can't reveal what they are at this time, but will update after the event and let you know what became of everything!

Thank you for your support!

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!