This is what it's about...a God learning moment

Yeah, I keep getting it more and more God...

This is what life is all about...I know it in my head, I know it in my heart, but I'm human and it has to be re-enforced from time to time...

So, this morning, I'm sitting in Connections Cafe at LCBC waiting for the doors to the auditorium to open. Every Sunday morning, I arrive early to check in for The Wheelhouse and kill the remaining minutes by meditating, taking my 9:00 meds, people watching, or going around and finding other people to talk to who may happen to be there early (and not running around getting things set up)! There's never a dull moment. There's always someone to talk to or something to see.

This morning was kind of unusual. I was sitting at a table and it was particularly slow and I was extra tired. I had just put away my empty container of meds, and just decided I'd stay there and see who would walk through the doors that I knew and wanted to talk to. I had missed last Sunday so it was really important for me to catch up on the social aspect of everyone's lives. After all, a lot can happen in two weeks!

Instead of catching up on what my friends had been up to, I had an experience I never expected to have when I got up this morning. As I was sitting in the cafe, a man had just finished getting a muffin and some coffee and he looked at me. I waved and said "hi," knowing I had never seen him before, yet he seemed to know me. He asked if he could sit with me, to which I responded "of course!" I moved my stuff to make sure he had room.

After the basic introductions, he said "My first Sunday here was the day you got baptized." I wasn't sure how to respond to that right away because I wasn't exactly sure where he was headed. But he went on and it became clear to me that he needed someone he knew was a believer to talk to. He started to tell me that he had been through a pretty tough time in recent years and had only recently started to come back to church. He stated that he had been church hopping "some," but all the churches he had tried were so traditional and he just wasn't comfortable in the environment. He lost his job two years ago, and had spent the past two years working in a job that was killing him -literally- as he had been working with dangerous chemicals. He knew he couldn't stay there for long and was seeking better employment. I nodded my head in acknowledgment that he had my attention, and I just continued to listen as he shared his story.

He started to talk about how he he was sitting with his son one night a few months ago, apparently drinking and watching sports, and said to himself "there's got to be more to it than this." He was frustrated with his employment and his life felt unfulfilled. He was seeking something, but he wasn't quite sure what. He had applied for five jobs and not yet heard from any of them. He was frustrated, and although he had his health, he knew he was not in a good situation with his job and not satisfied with the direction his life was headed.

He stopped briefly to ask me if I wanted anything from the cafe before the doors opened and then he continued with his story. He described how that night when he realized something was missing in his life, he decided to banter with God. He told God that He wasn't ready to move full-force into this faith thing, but He would meet God halfway. I'm not personally sure how I feel about "negotiating" with God, but I just listened...after all, this was HIS story. He told me that when he talked to God that night he said if God would show Him something, that somehow there's more to this, He would at least start going back to church.

Over the next few weeks or so he was turned down for four of the five jobs he had applied to. He wasn't expecting much, but his final application was in at the Army Depot in Mechanicsburg. Finally, Good Friday arrived. He made sure to emphasize the fact that it was Good Friday several times as he shared. He stated that around 10 that morning the phone rang. It was the Army Depot and they were asking him if he was available to come in for an interview. His eyes lit up as he stated, again, that "it just so happened to be Good Friday!" and that he was off work that day! He went on to describe how he had an interview at noon, and was called and offered the job by 3. Then, once again he said "and it just so happened to be Good Friday!" He said he knew then that there was something...he wasn't sure what, but that he knew it was not something that just happened. There was more behind it.

In spite of that, it took him a couple of weeks to "meet his end of the bargain," as he put it. I had told him earlier when we were introducing ourselves that I started attending LCBC Manheim in 2006 and had attended the Harrisburg campus since it was launched in Linglestown Middle school in 2007. He noted that he had never heard of LCBC until he saw the signs when we moved in last January, and that he only lived a couple of miles away. When he realized that what had happened to him when he prayed that night negotiating with God, and believed that the events that happened to him on Good Friday were not simply coincidental, he decided to check out LCBC. He admitted that he was a little disappointed when he walked in the doors that first Sunday and realized it was a baptismal service rather than a typical gathering with a sermon, but that in the end it was the perfect one to be at. The stories were inspirational and he loved to hear how the lives of others have been changed by Christ too. He concluded by stating that he only wished he could get his family there, but that his wife had begun to watch some TV ministries similar to LCBC and he was encouraged by that.

At that time, the atrium was beginning to empty out and people started to enter the auditorium. He said "well, I guess it's about time for things to get started." I said "yeah, it looks like it. Nice to meet you! Cool Story. I LOVE cool stories like that! See you around!" I proceeded to pack up my stuff and headed to the auditorium to find my friend, Jeff, as he gathered up his muffin and coffee trash to throw out. Again, God had another learning moment in store for me. As much as I enjoyed my chat time with him and was fascinated with his story and his willingness to be so open with me, I still had friends I needed to catch up with...I mean, again...it HAD been two, LONG weeks! :)

As I was catching up with Jeff on football, his love of snow, my love of the sun, his new job, his new hours, his plans for the day, and my Jeep, I saw someone walk to my right and sit down. It was the same man whom I had just spent at least 15 minutes chatting with taking a seat by himself two seats down. It hit me then that I should have stepped out of my comfort zone and invited him to sit with me rather than assume he had someone to sit with, or assume that he wouldn't want to sit with a 32 yo with a tube in her nose! And what was more important? Reaching out to someone who is still seeking and coming to church without family, or making sure I was up to speed on everyone else and making up for what I missed last week?

Over the next few minutes I knew what I needed to do to. As we sat there, listening to Pastor Mike ramble on about the importance of filling out the "Keeping in Touch" forms, I pulled out one of my business cards and handwrote my name and personal e-mail address on the back and handed it to him. I said "just in case you need to talk" and gave him two thumbs up. He said "thank you" and put it away. He thanked me again after the service for giving him my contact info as I said "it was nice to meet you...thanks for sharing your story."

I don't know if he'll write me at all, but I'm sure I'll run into him again. I'm glad that he felt comfortable coming to sit with me and sharing his story before the service, and that after I botched my first opportunity to invite him to sit with me, that he came and sat by me anyway.

I struggled for a long time over whether to get baptized again in March since I did it as a child, but after a lot of prayer I decided to do it because I felt like as a child I didn't fully understand the significance of it and my life has changed tremendously since...something I wanted to share with my new church family and public. I prayed that my story would somehow have an impact on the life of someone, but did not expect to actually hear or experience any outcome from it. Ironically, today was also baptism Sunday where more stories of lives changed by Christ were shared.

This is what it's about. This is what baptism is about. It can be hard to swallow your pride and admit that you need to take that step, especially when you have grown up in a Christian environment your whole life and everyone always assumed you were a Christian. It isn't the most comfortable thing to do to have your very personal, often painful, story shared with so many publicly. It's a little scary to look down into a pool of water and realize that your head is about to go down there and putting your trust in Pastor Mike not to drop you (or drown you as a Steelers fan!). But it's not about pride or discomfort. Jesus humbled himself and suffered great discomfort to reach out to others. He very publicly proclaimed His faith in the Father through baptism in a river in front of thousands of people. It doesn't stop there though. Baptism may be following in obedience what God proclaimed to be importance following the acceptance of Jesus as the Savior, but your life must also follow your proclamation.

I knew that some people who heard my story on March 23 would not have known the details behind my decision or why and how I came to Christ and decided to be baptized. I didn't expect it to lead to anything substantial. After all, I was one of 12 who was baptized that day. But apparently something hit this man in particular. Something big enough that he felt comfortable coming up to a complete stranger and talking about his struggles. That's what it's about.

I'm glad I chose to attend the first service this morning. I'm thankful for the clarity of mind God gave me and the fact that it was an unusually slow morning. It wasn't a coincidence that I was sitting there, tired and quiet, when he came up. Usually by then I would have jetted off somewhere and found someone to laugh it up with, playfully punch, or at least talk to about the events of the past or upcoming weeks. I hope that our interaction this morning was a start of something in his life that will lead to much greater things. After all, that's what it's all about. It's crucial to interact with other believers, study the Bible and worship every week together. It's important to serve in any capacity to ensure the ministry continues. But it's important to stop once and a while and think about those around you who may be there seeking something more, something new or different, and to be one who has shown an example that your life has been changed by Christ and is willing to share it.

The Elephant Clog

So, what happens when you cross an elephants nose and a slow rate of tube feeding formula? Clogged noses! Yep! Over a 6 day period, I was in the ED twice from a clogged up NJ tube! This is frustrating because it's the third trip I have made since discharge just over three weeks ago, and I'm looking at least another 4-5 weeks with this tube. On Tuesday, June 29 I went back in, exactly a week after the last time I had been there. The labs I had drawn the week before showed severe anemia and I had been scheduled to go to the infusion room for a unit of blood. However, when I woke up on Tuesday morning my tube was clogged up. I knew this wouldn't be fixable anywhere but the ED, so I solved two problems at once by going to the ED for blood (they ended up giving me two units) and to have my tube unclogged. Unfortunately, they were unsuccessful with Clog Zapper again and the whole thing had to be replaced. I was there from noon to 1 am between both problems. It took three attempts and x-rays to get it in the right spot. I had been off tube feedings since about 6:30 in the morning, so I was feeling pretty lousy by the time I got home. I slept most of the time in the ED thankfully! Partly because of exhaustion, and partly because I had to be pre-medicated with IV Benadryl for the blood. I was falling asleep before they even medicated me though.

On Sunday morning, July 4, I was at LCBC in the first gathering and noticed my pump had stopped and was flashing an occluded error message. I kept restarting it, but figured I was in a mess again. That morning I had tried to flush it and it had been sluggish. I flushed it with Coke and extra well to try to keep it open, but apparently I didn't do enough. Around 9:30 I noticed the message (I had turned off the alarm to avoid disturbing the service if any alarms went off). Finally, I left the gathering and went to an empty, private kidMin bathroom to try to unclog it (take a look in the bags of people with DTP sometime...you'll find interesting items, especially for those on nutritional support!). I wasn't successful, so I left early to come home and try more aggressively. None of those tricks worked, so I reluctantly headed back to the ED expecting a really long day! They almost decided not to do the Clog Zapper at all since it had failed both times before, but as per protocol they ended up doing it. This time was more encouraging almost immediately because the nurse said he felt like he had pushed through a tight spot when advancing the wire for the flush. I also had a much stronger taste of the Clog Zapper in my throat than I ever had before, so I was encouraged that it might actually work! After an hour, they tried to flush it again and it opened right up! Finally a "simple" solution to the clogged tube and a much shorter wait! I was able to be home in time for some of the evening of the fourth!

My nurse was great...he had dealt with a lot of NJ's when he worked in med/surg. He said that one reason it keeps getting clogged is because my rate is not fast enough and it ends up building up and solidifying. I had considered this was part of the problem, but it's not something I am able to change right now because my gut can only tolerate 20 cc's an hour. The other thing he said is that I need to flush it with more fluid and every four hours. This I can change, although it's not real easy. When I am only getting drips of fluid at 20 cc's an hour, a bolus of no less than 30 cc's at once makes me pretty sick. He said technically I should do 60, but 30 would at least get me through the tube. So, since then I have been using at least 40. In the morning and evening I use a little Coke and then water because I don't get out of bed every four hours and hope that will keep it open overnight and clear any formula out in the morning. I flush it more frequently during the day and he recommended that I get a prescription for Clog Zapper to use whenever it does get clogged. That way, I can avoid the ED unless I actually need a tube change. It would also cut a few hours off of ED time if that had already been tried before going in.

So, what's up with my doctors and the status of the potential j-tube? I don't really know except that not much is going to happen until at least mid-August. My transplant coordinator is going to be out of town the next two weeks. She said clinic is looking crazy. She encouraged me to wait until after she comes back so both she and Kareem can spend more time with me. So, my mom and I are scheduled to go back on July 29 to Pittsburgh. I'll discuss my options then and just hang in there with the NJ for that much longer. It's ok...my main rush is I am tired of it getting clogged all the time, but hopefully I have some better solutions on preventing that now and it will function better. plus it's a little annoying to have this thing right in my face, but I figure if an elephant can do it, I might as well not complain about it! It's a little easier to deal with something when you know it is helping though!

So, anyway, getting back on track...I will be attending the Global Leadership Summit which has a Satellite campus at LCBC every year as a host site. This year LCBC Harrisburg will be a host as well! I've been the last two years in Manheim and it's one of the highlights of my year, so I definitely don't want to miss it! That takes place the first Thursday and Friday in August, so I plan to wait until at least then to do anything towards the j-tube since I don't want to miss out on that and won't see Kareem until less than two weeks before. I may even wait until the end of August because G-PACT is holding a DTP Facebook Awareness week at the end of August that I'd like to be part of. Although my friends and other volunteers would be excellent handling it without me, I just want to be a part of the daily events and the whole week too! But I will see how things stand at that point and then decide. G-PACT's 9 year anniversary is August 23, so we have chosen that week to do an annual event through Facebook to increase awareness. We have some cool ideas started :)

On Monday, I was able to enjoy an evening out with one of my friends, Bonita. We went to Best Buy to play with the iPads, then to Panera bread just to sit and talk for almost two hours. It was great to hold an intelligent conversation with someone who has been wrangling with some similar questions and issues in life as I have been recently. It was nice to swap theories, ideas, and opinions openly. Then today (or Tuesday!) I went to see Toy Story 3 with one of my LCBC Life Group friends, Janae. It was a really great movie! I highly recommend it to ANYONE! I often have trouble making it through movies...I get bored, tired, or lose focus, but I didn't with this one!

Other than the medical drama, I've spent a lot of my time on G-PACT and sleeping A LOT! My biggest G-PACT project lately has been trying to get votes for us to win $20,000. We are in the running for it, but it's been really stressful and the competition has gotten tougher! I've been pretty worked up over it because it's really important for us to receive these funds, so it's been nice to have some down "chill" time with friends to kind of keep things at bay. There are 5 days left...I'm stressed because if things don't get better we will lose out on this, but I'll also be glad when it's over...regardless of how it goes...because I'm so tired of pushing it so hard and I have so much else I have shoved aside in order to get this accomplished. I need to get back into my regular, and newly added, work. I hope to eventually get out of the administrative aspect of G-PACT and move into writing and illustrating childrens books about DTP, tube feedings, TPN, life at school, talking to friends, not being able to eat, and other issues kids face and then sell them to raise funds for G-PACT. I also want to work on a book for young adults...humorous, yet serious, on dealing with DTP and include a lot of my Carissaisms. Eventually, I'd also like to write my own memoir. Right now I don't even have the time to keep up with the basic work I have to do! This is good in one sense because it means we have grown so much, BUT it's also frustrating. I am so grateful that there is so much help out there for me now though! We can get so much more accomplished now with about 30 people volunteering! And they are all so passionate and awesome! :)

I've been enjoying time in the Jeep recently with the top off! So much fun! I just love the summer, even though it's been so HOT! I am extra sensitive to the heat this year. I think my neuropathy has worsened because I have so much pain after being in the heat now that I didn't used to have as much. I get home and my hands and feet feel like they are on fire for a long time and I can't feel them well. I know partly it's because my nutrition is compromised more, but primarily most things I have had going on in my body are just deteriorating. I did hear about a doctor at Childrens Hospital of Pitt who knows a good deal about mitochondrial diseases and may be able to get some starter info and point me in the right direction as to whether or not I should pursue it before I actually make a trip out to Cleveland. He may even be able to diagnose me or find some of the markers for it through some genetic testing. I am hopeful that I can get in to see him next time I go to Pitt! My friends who have it have told me that I need to get in to see someone...and soon...because if it is Mito, I am on some meds that are making certain aspects of my condition worse. There are also some things that can be done to help slow things down and help me feel better in other ways. So, based on that, there's more of an urgency for me to get it checked out so we can try some new things and prevent some other potential problems or at least delay them some!

Thanks for your continued support. I'll try to keep posting on a more regular basis, especially since things are changing so often these days! Your prayers are appreciated for:

Wisdom as I make some tough medical decisions

My physicians to come to an understanding/agreement on my treatment so I don't lose support from either team

Increased nutrition and overall improved health status

No more tube (nose) blockages!

Friends who are battling some really tough physical challenges right now, many in the TICU at Pitt

Strength to continue the fight...physically, emotionally, spiritually, and mentally

Opportunities with G-PACT- the guidance I need as a leader and servant to so many people and the vision to remain in tact, especially during the challenging times when we seem to just hit brick walls!

The Elephant Returns

A lot has happened since my last blog. I have since become a long-term elephant! I was re-admitted to Hershey Med just six days after discharge the weekend before. I never really felt like much was accomplished during the first nine day stay. I went to my doctor the following Friday and I was really weak, pale, thin, and dry. She admitted me with failure to thrive and instructions to have a GI consult and place another NJ for me to go home with. This time I was even more frustrated because I had to go back knowing that I had pretty much wasted nine days the week before and was feeling no better. But, I was also hopeful that they would be more thorough and that by keeping the NJ in for a while longer would give me a better chance of feeling better in the long run.

I was in the hospital for eight days, many of which were really tough as I felt from almost the beginning that I was in quite a fight to get the doctors to grasp what I am dealing with and all the various complex issues I am aware of that needed to be considered. I was worried that my concerns weren't being addressed. I know that these doctors don't know me because I have dealt with Pittsburgh so much since 2004, and only my doctors pre-transplant know of the unusual complications I develop, but I was flustered that they didn't seem to grasp that I am not the typical patient and my body does not react normally to anything! Finally, I felt like they started to listen once my labs started showing some funky results, pretty much like I told them they would! I only wish I got paid what they do for the work that I do and my out-of-the box thinking on how to treat myself! HA!

After about three days on tube feeds through the NJ I started to show signs of significant "refeeding syndrome." Refeeding syndrome is what happens when the body has been starving for a long time and is starting to receive better nutrition. My phosphorous dropped pretty low. This happens to me almost every time I am restarted on nutritional support of any kind. It's actually a good sign because it means that my body is absorbing the increased nutrition, but it slows the process of feeding down because it can also be dangerous to refeed too quickly. Over the course of the week, my potassium and magnesium fluctuated, something else I told them would happen, even with high rates of IV replenishment! It's part of my conditions that my doctors have been baffled by...they've never seen a patient drop potassium like I do w/o kidney issues, w/o severe diarrhea, and while receiving high loads via IV. It's one reason I am pursuing Andersen's-Tawil syndrome (a Hypokalemic periodic paralysis) as part of a mitochondrial disease...dropping potassium like that is a norm!

My feedings were gradually increased and a GI consult was made. I went home on a tube feeding rate not quite satisfactory, but it was more than I had been getting in nutrition when admitted. I've been working on increasing the rate on my own at home. My success has been limited, but I am up 5 cc's an hour...I think, although occasionally I get sick and have to slow things down. They would like me to get up to a total of 30 cc's/hour, but I'm on 15-20 right now and not sure if I will be able to go much higher. I'm still getting close to 1,000 calories a day over the course of 24 hours because I am on Nutren 2.0 which is thicker than the typical formula used and has 500 calories per 8 oz. It's been a little bit of an adjustment to be back on 24 hour nutrition, but not as much as I thought it would be. I was used to my non-backpack carrying days, but now I pretty much cart it around with me again without even thinking much about it!

I have noticed that it seems to be helping me some. I am still very symptomatic when I eat, but that's not new and certainly tube feedings don't help the underlying problems, just help with one of the complications of having them- it's no worse than it was. It's giving me the nutrition I need without the pressures of having to eat and knowing I will just get sick and lose most of it anyway. So, the pressure is off to try to force foods when I am not feeling well. It's keeping me hydrated, and I do have a bit more energy. Plus, it gives me a chance to have better control over my nausea by giving me a way to get liquid phenergan directly into my small bowel where it is more quickly and easily absorbed. I am pretty anemic right now, almost to transfusion levels, and I DO feel symptomatic from that, but not as much as I could if not for the nutrition I am receiving. I'm having trouble getting up stairs...my legs get weak, I get short of breath, I have almost fallen a lot because of weakness, getting up in the morning is tough, and I am tired out by 7 PM, but I have more energy for more hours during the day overall. When we get my counts back up, be it through transfusion or other means, I am sure I will feel a whole lot better too!

On Monday, my tube got clogged! I joke about my tube as being my elephant trunk. My mom and I tried for a total of 3 hours to unclog it using all the options we knew of, but were unsuccessful. On Tuesday I had an appointment with internal med, but they said they couldn't do anything so I had to go to the ED. They put me in total isolation because of the immune-suppression and I was placed in a psych room with nothing in it but a fixed bed and mattress! No TV, no electrical outlets for my phone to charge, no people to watch, padded walls, high ceilings...it was REALLY freaky and I was in there for about 7 hours as they used "clog zapper" to try to unclog my nose! I tell people now to never complain of a clogged nose to me because I will not be sympathetic! I'll laugh, and hand them clog zapper and diet soda! The doctor came in before the second attempt and informed me that if they could not get my tube unclogged, I'd have to be admitted for the placement of another one. I wasn't happy about this feeling like it is one of the easier procedures I go through and should definitely be do-able in the ED! Finally, he told me that in a "normal" person he would be more comfortable doing it, but not in someone with my history. When I told him the nurses on the floor placed it, he did more research and decided he would try to put one in himself. After a few more hours and three attempts and x-rays later, finally it was over and they let me go home...but not without a little mishap on the way out! As I was leaving I started to bleed very quickly from one of my IV sites and had to go back to get it stopped. My blood has been extra thin lately, and i think it's because they have been giving me Fragmin shots in the hospital as a pre-caution because of my factor V (blood clotting problem) and the fragmin doesn't seem to leave my system very quickly. So, after an extra half hour detour, I finally headed home about 1 AM.

On Wednesday morning I had an appointment with my gastroenterologist. We discussed the tube feedings and I told them they have been helpful and I haven't been getting as sick. We discussed reasons why this might be the case, and what to do long term. As expected, he has recommended the surgical placement of a j-tube to replace the NJ. I had planned on using the NJ as long as possible before making a decision, but he feels like I should know within a week if it is helping for certain and has recommended that I have one placed much sooner. I'm not quite ready to approach my Pittsburgh doctors with this yet or even make a definitive decision myself on it, but I do feel better and I know that I wouldn't without the help of these feedings. I'd still be sick all the time and struggling to eat. My docs know that if I don't stay on tube feedings that I will just be in the hospital every week at this point and that's not acceptable and definitely not a way to live!

It's tough for me to think about going back to a j-tube, but at the same time if it helps me feel stronger I think I'm prepared for it. I can't imagine going through surgery within the next couple of weeks...while I am prepared for it, I'm not quite ready...if that makes sense?? I don't want any doctor but Costa or Kareem to mess with my organs and I'm not sure how on board they will be for this. Besides that, any surgery is very risky for me and could create complications due to inability to heal, high risk of infection, and bowel obstructions. I think it could take a little while to get things in motion on their end...so, well, I guess I SHOULD get started making plans...

After I went to my GI appointment, they drew 11 tubes of blood. Since those labs showed anemia on Wed, who knows what my counts will be on Monday when rechecked. In spite of that, I surprised myself by having enough spunk to make it to do a couple of hours of volunteer work at LCBC and hold an all volunteer board meeting on Wednesday evening for G-PACT.

The volunteer meeting was productive. We discussed a lot of ideas and it was the first ever all volunteer meeting we have had. It gave people a chance to connect and actually talk to people and discuss ideas over the phone. These meetings always tire me out, but I did well, especially considering the long day and late night I had on Tuesday! I took Thursday and devoted it to catching up on my G-PACT work and on Friday I helped out at LCBC again. Today (well, yesterday...Saturday...) I went to the LCBC kidMin picnic and that was a lot of fun! Today I plan to return to the Wheelhouse for the first time in a while and hopefully make it to Life group in the evening. So, in spite of it all, I'm still living and loving life...elephant nose and all!

My LONG time prayers were answered this week when a professional web designer offered to redesign our website and include an entire social network dedicated to GP and CIP, blogs, mobile content, and so many other very cool interactive features I don't have the experience to work on or the time to want to try to learn! He has GP and has offered his time for free because it will really help us out! Now anyone can add content, not just me, so the website will be a lot more current now and provide so many features which can really take us to the next level. It wasn't a hard decision for me to agree to let him do it! I have been looking for someone of his caliber to work on our site for a really long time! I can't keep up with ours in addition to all the administrative work I have and other life activities!

At the picnic on Saturday, one of my friends and motorhead, Michael Johnson, pulled the top off of Blue lightning for me! Talk about a blast coming home! I have been waiting for MONTHS for this day! I'm so excited! Summer can now begin...a month later than usual for me, but at least it is time for a couple months of fun in the sun! :)

I'm going to close here now, but did want to make one request...if you are on Facebook, please go to the Chase Community Giving Challenges page and "like" it. Then please vote for G-PACT! We are in the running for $20 K and every vote is crucial to make sure we don't lose out on these funds! We can do so much with that money! Please take a few minutes of your time to vote for us! If you are a "friend" of mine, please check out my notes for more info on it!

Off to bed I must go...it will be a long, tiring day today...Sunday if I don't get off here...like...uuummm...a few hours ago! Sigh...oh well...I'll make up for it sometime. I can't WAIT to return to the Wheelhouse and hang with my kids! What's funny is I dropped by the WH last week to say hey. The kids were excited, but then one of the twins (who is a mess!!!) stopped and blurted out "what happened to you?" I started to say that I was sick and I had this in my nose to help me eat (I'm going to go with the whole elephant thing with them...) and Melissa jumped in and said "this is what happens when you don't eat your vegetables!" This kid got a look on his face like he didn't know whether to believe her or not...It was really really funny. We were still laughing about it on Monday!

The road of the elephant...and where it goes next

Ok, so I'm FINALLY getting the world caught up on my health status. I apologize for seeming to be "mysterious," but I'm trying to come to terms with things myself and I just haven't felt well enough to focus on keeping everyone in the loop. But I do appreciate your prayers and patience as I work through a lot. I feel kind of lost in this medical jungle, once again. I've had many times in 16 years where a big medical decision was placed in my lap, obviously. I mean, you don't choose to go through a 5 organ transplant lightly. But in that case I had no choice, as I saw it, because it wasn't going to make things worse...and usually my doctors had an opinion on it or would provide me with some kind of guidance...

I'm not in the situation at this point where I will make things permanently worse if I go with the route I have been considering, but it's just that I've been here before and it's difficult for me to think that four years after a life saving transplant, I am in a situation where it has become necessary again and makes me wonder about the future over the next year or two...

As you know, I was in the hospital nine days last week. I went in dehydrated and malnourished because for almost a year, gradually worsening over time, I have been unable to eat very well due to my combo of problems of dumping syndrome and gastroparesis. Treating one worsens the other and the diets are opposite of each other too!

Last year I spent three months on TPN (IV nutrition) and developed sepsis twice in that amount of time, once requiring a lifeline to Pittsburgh. I have a history of this which is how I lost all my veins and ended up needing the transplant in the first place. Since then I have learned more about conditions I may very well have which make me so susceptible to infection, but being on immuno-suppressants because of my transplant puts me at even higher risk for developing sepsis and lowers my odds of being able to fight it off as well.

Since stopping the TPN, I have dropped in weight down to 85 pounds. I am weak and have fallen a lot. Fortunately, I have not broken any bones considering I have osteoporosis! I have been losing my hair and other parts of my body have started to show signs of poor nutrition. In addition, some of my other symptoms pre-transplant have returned to some of my other organs. I have chronic body pain, nausea, and abdominal pain which keep me awake at night uncomfortable. I lose everything I eat whether as a result of dumping syndrome or gastroparesis. I am following the diet(s) the best I can, eating small portions, but even a few crackers will kick off an attack so bad I am miserable for hours. I am not getting down 500 calories a day, if even close to that. Part of my problem is I can't have sugar, so even my fluids don't provide me with any calories!

For weeks, perhaps even a few months, I have had a thought on my mind which I brought up with my mom a couple of times, but really shoved behind me because I just felt like I wasn't ready yet and that surely there was a way around this. I'd go to Pittsburgh and think about bringing it up, but then I'd change my mind feeling that perhaps with the little tweaking, or different perspectives from other doctors, that we'd hit something and I'd be able to turn this around on my own. But that hasn't happened and instead I've just continued to have more problems and get even weaker.

During my admission last week, obviously the question of long-term nutrition came up. I have, literally, been blacklisted by the Hershey Med Interventional Radiology Department for all central lines. Basically, they don't even want to look at me because they sent me back to my room in 2004 saying I had nothing for them to access anymore. So, TPN is out in the eyes of Hershey because they don't know where to put a line, and for the time being, Pittsburgh as well because I am too high of an infection risk. I don't even want to consider that option anyway...

While talking to the doctors last week, the suggestion was made to put down an NJ tube for feedings for a few days just to see how I tolerated those and to see if I could get in some nutrition that way. It was then that I mentioned I had actually been considering talking to my doctors about placing a j-tube again for nutrition, having no idea if this would be a way to receive nutrition and cut back on symptoms by not having to eat, but I was concerned about having surgery and causing damage to my new organs for something I wasn't even sure would work. A j-tube is a feeding tube which is surgically implanted directly into the small bowel, bypassing the stomach. I have been unsure if this would work since I know I have some small bowel problems, but dumping syndrome and GP are primarily in the stomach, even though DS causes more small bowel, pancreatic, and cardiac type symptoms. However, I had never considered giving an NJ tube a test drive. An NJ tube is a feeding tube that goes through the nose and bypasses the stomach and feeds directly into the small bowel. It can be placed without requiring surgery. A j-tube surgery would create more adhesions and lead to a higher risk of bowel obstructions. The problem with an NJ tube is that it has to be replaced frequently, is not ideal long-term, and is very visible! Vanity aside at this stage in my life (yeah, an IV line in the neck isn't exactly attractive either!), it's an uncomfortable thing to have a tube in your nose all the time, although not something I haven't done before.

After clearing the option with my transplant doctors, I let Hershey move ahead with the NJ tube placement (thus the elephant comments and pics began!) :). My thinking is that if we bypass the pyloric sphincter, my DS will not be aggravated and my nutrition will stay in. DS is the result of damage that occurred to my pyloric sphincter during the transplant. The pyloric sphincter is the valve at the bottom of the stomach that regulates the rate at which food empties from the stomach into the small bowel. I think if we bypass the pyloric sphincter and infuse nutrition directly into the small bowel, I won't be nearly as symptomatic and perhaps absorb some of the calories that I receive this way. Unfortunately, I didn't get the opportunity to give it a true test in the hospital. Being there over a weekend, especially a holiday weekend, always slows things down! Plus, it took them a while to get the tube in the right place so I lost a couple days that way. Once in place, tube feedings had to be started very slowly because my gut is not used to handling much and was being introduced to new things. In two days, I was backed up and not handling the feedings well so I was switched to another formula. Sometimes this makes a difference. But, they were quickly stopped again because I was not able to have anything in my gut for a while in order to go through testing and biopsies. A couple days later I was discharged and the tube was pulled out. However, on the small amount of tube feedings I was able to tolerate, I did feel some better and was less symptomatic. I don't know if this was the result of the IV meds I was on, the fact that the tube was actually working, that I was eating less because of the tube feeds taking away my appetite, or what. But, I want to try again...I'm at a point of desperation. I just don't feel well at all. I'm tired. I ache all over. I'm weak and short of breath. The scariest thing is that my potassium has been running low.

For those of you who know my history, I have a long QT interval (electrical abnormality in my heart) and went into cardiac arrest 6x in the years before my transplant as a result of either meds or low, even low-normal potassium. I fear I am entering that phase again of having to constantly focus on my potassium and worry about what every heart palpitation I experience may mean. Heart palpitations come with dumping syndrome, and I don't want to live with that constant fear when I am dumping, while I know it is important to have a healthy concern. I may start going back to my cardiologist again given the current situation or at least have routine EKG's to ensure that I am not returning to an unsafe situation with my heart. Either way, my body is feeling and showing signs of poor nutrition more and more every day and I am struggling to get by and frustrated by the fact that my activities are starting to become more limited. I am still doing as much as I can, but clearly my concentration is worsening, I am not out of bed for very long periods of time, I have concerns about driving many days, and going up the stairs requires a lot of effort again. I've had to pull my HP parking permit back out, something I only used on rare occasions until recently. All of this has been tough for me. While I have been through it before, half of my life has been filled with medical drama, and I have been very fortunate in terms of my body not REJECTING my organs, this is what I see as a major setback and almost a return to my status before going through the transplant. Sure, complications are always expected. When you have a transplant you go in knowing that you are trading one set of problems for another. I just had hoped I wouldn't be trading the set of problems for the exact, or similar, set of problems again...certainly not anything that would stop my ability to eat! I love to eat!

Having said that, the NJ tube is in no way curative or a way for me to eat better. The main goal at this point is to help me get back on track nutritionally and to feel physically stronger and more functional. It won't have an impact on my symptoms if I do eat. The only thing it may do is make my gut stronger and improve my nutrition so that perhaps it will eventually be able to function better simply by being more nourished. That was also the goal of the TPN. The other thing is, my transplant doctor isn't convinced this is going to work. In fact, he thinks it may make the DS worse. I don't think it will because if we pass the pyloric sphincter, we are passing the problem that causes the dumping, but we are in new territory here with all of this and he just doesn't know. He has said it is something I can try, he won't be upset or think poorly of me for doing it, he just won't do it himself because he doesn't have confidence in it. But, he has said my doctors in Hershey can do it if we would like to try it.

So, I am scheduled for an appointment with my PCP this Friday at 3 PM. I had wanted to get in with her on Thursday because I am feeling really lousy, but she's not in on Thursdays and I chose to wait a day and see her rather than see the PA on Thursday. Technically, I should go in under GI, but I know I won't get an appointment with my GI doctor fast enough and I'm already in as bad of shape now as I was on admission two weeks ago. I'll present this option to my PCP and we'll go from there on Friday, but I think the plan is pretty much set as I see it. The good thing with the NJ tube is we can test it for a while and see if it works and all it can do is just not work or make me feel sicker...it won't do any permanent damage to my organs. If it does end up working and we see that it will be a long term need, I will then talk to Dr. Kareem about the possibility of the surgical placement of a more permanent j-tube (I am not comfortable with anyone but Kareem or Costa operating on my beautiful organs!) and also the possibility of having a g-tube placed again so that at least I could enjoy eating and get rid of the contents without vomiting or experiencing the miserable dumping syndrome symptoms if I do get sick.

I didn't think there could be worse GI conditions than GP and CIP. I still don't think there are, except when it comes to dumping syndrome too. They are all horrible...and a combo of any is a nightmare. I experience all three at various times, or all three at the same time too. I know it is odd, but that's the way it is. Dumping syndrome alone is totally disabling. Even before I started to develop signs of GP and CIP again, DS had me flat on my back many many many days. Now I don't know what is going to do what. At least with just one I knew how to eat to manage things more easily, but it got to a point where even just the dumping became unmanageable. Now with all three interacting, it complicates things more...and by treating one, we make the others worse. My hope is that, even if not ideal, the CIP and other potential small bowel issues do not prevent me from being able to feed through the NJ, and if necessary, J-tube as I try to find a way to improve and stabilize my health and not fall into a severe level of poor nutrition or greater weight loss (I was 62 at time of transplant). My osteoporosis has worsened in the past year already. My body doesn't even have what it did pre-transplant to bounce back from as much. I'm not in as bad of shape as I was pre-transplant by any means, although I do have days I feel as bad as that, but the trauma to my body over the years has just added up and I don't feel like I have as much to fight back with for any major complications with treatment options or anything caused by malnutrition or just the overall problems related to the native condition which started this all in the first place (still unknown, pursuing Mitochondrial Disease which could include Andersen's-Tawil Syndrome, POTS, and a few other things fitting the puzzle pieces together).

It's late so I'm starting to ramble and get off track. Basically, that's where it stands...I'm going to try the NJ tube on a longer term basis and see if I can get a reasonable amount of tube feeding into my system over 24 hours/day with fewer symptoms. If so, it's worth keeping an NJ tube in at home for a while too. If effective, I may seek the placement of a permanent J-tube, possibly with g-tube so I can at least enjoy eating some. I have problems with NJ tubes sometimes not holding in place and creeping back up into my stomach, which clearly creates problems, but it is a fixable problem too. The NJ is only temporary and will only last a few weeks or months...but perhaps that is long enough to get me nutritionally stable and eating better. Also, I don't know that it's even going to work. This is going to be a period of trial and error as it will take a while to get feedings up to a decent level while my gut adjusts, and I don't know if symptoms will improve or not.

I also don't know the status of my small bowel and whether my worst symptoms really do originate mostly in the stomach, or how many originate in the small bowel too. My prayer is that my stomach is the biggest problem and I don't have to deal with the additional problem of major small bowel issues too so that I can handle the tube feeds and not have to worry about TPN, potassium and cardiac issues as much, and will have this option for nutrition until my stomach decides to cooperate! It's complicated...it's very complicated. And it's frustrating too. But it is what it is and it's just one more thing I will deal with and get through. I had just hoped that I would never reach this point in my life again, or at least not this quickly, but I'm tough and I'll deal. It won't stop me. I'll keep plugging away with all my activities, living life as normally as I possibly can in spite of it all.

I will always keep fighting for a cure for these problems, even if I will not personally benefit. I'll just keep being me...and take what comes as it comes, one day at a time, even an hour and a minute at a time. I'll enjoy the good days as always, and on the bad days, look forward to the good days. Nothing has changed in that way...my life isn't over, I don't regret going through the transplant at all, and I'm still optimistic and love life! This is just a bump in the road, or as my friend Nancy likes to say "Transplant patients don't have bumps, they have potholes!" Very true! But there's a way to look at potholes too. Even though potholes can be big enough to throw your sysyem out of whack, they can be fixed and filled too...not always perfectly or smoothly, or through the easiest means, but there are alternatives and options and the road can still continue and be traveled safely.

Thank you for your love, support, and interest as I pursue this next step on Friday. I respect my transplant physician and he is my hero. But, I also feel like it is time to branch out and step into this. Perhaps I will learn something that he can use...if it works for me, it may work for others. If it doesn't, he's right and I'll know that. But I have to try...I can't think that it might be an option to help me feel better nutritionally and not try it. Even if he won't be involved himself, I am grateful he has given me his support to try it if my doctors in Hershey are willing to work with me on it.

running out of gas, or maybe not!

Once again I am frustrated over hearing "there's nothing we can do, deal with it." I know this is true, but you can only say that for so long before things to happen and body parts start to fall off...like hair...and a few other things! My awareness bands for all my various awareness things...can't wear those anymore. Ya know? Like Blue Lightning, if I ignored a problem too long it would only makes things worse and he would start making a lot of noise. I guess that's what I'm doing! I'm not letting them ignore this and am making some noise! Unlike Blue Lightning though, I will never run into the problem of running out of gas! ;)

So...I called my PCP's office today for an urgent appointment for Thursday at 1. I am planning to get my sandostatin injection for my dumping syndrome, but I am going to talk NUTRITION and what is the solution when I am so sick, in pain, and cramping on just a few crackers, an egg, or some cheese? My body feels it...I ache all over, I'm weak, short of breath, and have chest pain and tightness. I'm generally weak all over. I'm talking pain at times that has had me in tears and yelling out....something I rarely do. I'm not sure what my options are...TPN is out because of my high infection risk, eating is not working...that I've been trying for months and months and have just failed. I'm not sure Pitt has dealt with someone with two opposite conditions so I'm kind of just a test and just figuring it out on my own. The dietitian hasn't been helpful...she's tried, but everything that's ok for one thing is nasty for the other now. I used to handle eggs ok, but now they affect me one way or another. I don't know if my gut is screwier, I am personally screwier, or my meds are just all messed up! I do know that long periods of not eating well makes the digestive problems worse, but what do you do??? I'm always telling people to keep eating as much as possible to prevent that, but, like me, the response always is...easier said than done! I know that. Why do I recommend things I know are ridiculous? I must think I'm a doctor! HA! Only I have the first hand experience...I should know better! It is the truth...it's just kind of a stupid truth to know because it's not like there's much that can be done about it...eat=puke or pain and then eat again? It's like subjecting yourself to torture...but oh how I love food!

I guess over time my appetite has disappeared which is odd...in some ways a blessing because I am not so mentally tortured. The fact is that if I did have an appetite I still wouldn't be able to eat any more. I think I almost always had an appetite even pre-transplant, but now, even on steroids, there's not much there except the occasional craving for something during a time when my gut feels ok...but most of the time I'm a queasy mess and that prevents a desire to even look at food.

I often think, oh, my gut is ok right now, I won't get sick if I eat something...then I have a bite of something and I know that my gut isn't ok after all...and very quickly most of the time. Even just a sip of my Crystal Lite or diet soda can make me sick for a really long time...and THAT kills my appetite for anything more...it's good to try things to make sure that I'm not just in a slump...a one year slump (?) but I try on the cautious end. Nope. No slump! Something has changed. I just wish we knew what it was. The unexplained is pretty maddening! The good thing about being bald? I am not pulling my hair out over all of this...and it's so darn easy to take care of...a simple washcloth does the trick if I don't feel like I have enough energy for a full shower. One of these days though, I won't mind pulling out the mop! :)

The happenin's from Pitt....and life and stuff....

So I went to Pittsburgh last week and basically returned knowing what I did before I went- I have Dumping syndrome, Gastroparesis, Pseudo-Obstruction and there is nothing else they can do. I am not eligible for TPN at this time because of my high infection risk and lack of veins. I am healthier and more active than before the first transplant, so re-transplantation is off the table for now because of the high risks associated with that. I must admit, even the mention that it's off the table threw me for a loop because that is not even an option in my opinion at this point anyway! It hadn't crossed me mind! That could only make things worse if it doesn't work out and I don't feel like I'm there yet either! Basically- deal with it all the best I can. This is what I have been hearing since I was first diagnosed! Ho Hum...

Dr. Kareem noted several things while there. One is my hair loss- instantly. He is quite concerned about it. While I think it's just poor nutrition...still...he seems to think there is more going on. They did a lot of blood testing including thyroid, which came back negative, some testing to see if I am sharing genes with the organ donor, zinc levels, and other things. Another thing he noted is that he has a number of patients who have been transplanted as a result of CIP and the condition has returned a few years later. He did a paper a couple of weeks ago on four of us and included some thoughts on why that might be the case, but basically came to the conclusion that they don't know and it's important to continue the research. This interests me because just a couple of years ago he told me he loves CIP because it is dormant- once you take the organ out, the condition is cured. Apparently, he has since discovered this is not the case in a number of people, especially those who developed it later in life and were not born with it. There is still so much they have to learn, and he acknowledged I am teaching him. Not sure how I feel about that. I guess if I have to go through it, I might as well educate him in the process...I just wish there was a simpler way to do it!

In addition, he noted my case is not normal and he KNOWS I have an underlying condition causing things to deteriorate again. He looked at my hands and noted that one is a different color from the other.He commented on the abnormality of the appearance of the veins in my arms and how they run. He noted a lot of the other abnormalities I have described in mitochondrial disease in a lower blog. My coordinator encouraged me to pursue it because Kareem is really seeking the answers for the cause right now and if I can figure it out in my case, it may help others as well. So, I am going to begin communications with a physician in Cleveland and may make a trip down for testing, which includes a muscle biopsy, in the near future. I may not be helped at this point, the damage has been done, but perhaps the progression could slow down as I am rapidly developing newer problems and my GI tract is really start to enter a bad point again. In addition, if they can learn anything from me to help others in the future, I'm all game for doing that. I'm as ready to find a cause as they are so we can prevent or cure the problem in the future for others. He did mention I could be in chronic rejection and that they may not know about for a long time. It often doesn't appear in testing for a while. I don't know if that's the case or if it's just the effects of the conditions combined and inability to manage the complex diet. I guess only time will tell.

Having said that, I am surviving on string cheese, scrambled eggs with cheese, cottage cheese, sugar free yogurt, occasional mashed potatoes, and rarely pasta. Pills and fluids in small amounts are my main source of nutrition. I also only really eat once a day and that is enough to send my gut into a complete tailspin...and the "really eat" is scrambled eggs...or diabetic yogurt...or 4 oz of cottage cheese. I am often up all night sick and in pain just from that...abdominal and back pain I'm trying to avoid my phenergan and extra pain meds because they wipe me out beyond function and I can often deal with the symptoms much better than the sleepiness. I'm concerned. I ache all over all the time, am weak, fall a lot, unbalanced, and generally feel unwell. I'm tired all the time and get frequent, severe migraines which then make me even more nauseous! I was up all night the other night with pain and nausea so severe I was literally in tears and screaming out for some level of relief...I'm strong and rarely do that. I'm tough and have been through worse, but the other night I was wondering how much more I can handle.

It's so tough to know that every single bite I put into my mouth is going to make me sick to some degree, no matter what it is, but I have to eat anyway. I really wish eating wasn't required for survival. Something that we are supposed to enjoy on earth is something I completely dread and brings me such anguish.

I wake up in the mornings still sick from the night before and with a cough and chest pain from my LPRD (swallowing disorder) and overall slow motility. After a little while, I start to feel better and start doing things. It's a challenge because if I don't eat I actually have more short-term energy and can do more, but once I do eat, I become completely non-functional and fall asleep! It's not healthy to be in either extreme! Then, of course, the overall impact off not eating well over the long-term sets in and I feel bad either way I go. But I continue to do as much as I can!

I saw my osteoporosis doctor on Thursday. She added more testing into the hair loss and suggested that I see my dermatologist as well. She mentioned I have lost bone mass again in the past year and doubled my calcium. She wants me to return in six months instead of one year this time. I am supposed to take my annual Reclast infusion at Hershey Med as soon as I can get into the infusion room. Great...they get to put in an IV line for a ten minute infusion! HA! It'll take them a couple hours just to get the line in!

I'm really tired and sleeping way more than not, so I have trouble writing much right now or keeping people updated on anything anymore- whether G-PACT, Life, my health, or other things. I go through crash phases all the time, but they are becoming more frequent the longer this goes on. I HOPE something starts working right so I can get back to at least 1,000 healthy calories a day and get some spunk back. Plus, I'm tired of being up late at night reeling in pain or fighting off nausea...and having to choose between nausea or being crashed out on pain or nausea meds for days! It's a tough balancing act...but in general I choose nausea/pain over crashouts!

G-PACT continues to go awesomely...I love all my friends, volunteers, and so many who are so passionate! To the ones who are actual volunteers, to those who support us in any way by awareness or donations, to those who simply follow us seeking the help and hope we provide. Everyone is so important and we are all fighting this together, no matter what capacity.

We've had a number of events going on lately and have a new FR director and new PR director. We've also run into, yet another, complication which points to the need for more awareness! Medicare recently decided to stop covering idiopathic GP as a principal diagnosis. We have a large letter writing campaign going among patients and loved ones, have all 28 members of the Digestive Diseases National Coalition active in fighting this decision, top motility doctors, and top attorneys as well. Our voices are being heard...we have declared war. We can only hope it makes a difference. So many of our patients have idiopathic GP and are on Medicare. They face the risk of losing coverage in 2011 if we can't get this decision reversed.

Please pray for all of us at G-PACT as we fight this, in particular our VP/Esq. and myself. We are both feeling the pressure of this and are feeling overwhelmed with the amount of work involved to ensure we protect our members who so desperately need to have this decision reversed. What Medicare does often is a foretelling of what other insurance companies will do, so what we accomplish this first time around is vital! The decision should not affect me since my primary diagnosis goes under the Medicare transplant program, not GP, but there was a time it would have definitely impacted me so I understand the fears and frustrations shared by my many friends! We are determined to get this reversed...the last thing GPers need is another thing taken away or not approved, only adding to the stress of dealing with the condition and the loss of hope.

I still am active with LCBC and just love it and the people there more and more. I like to spoil the Wheelhouse kids, and my wheels are always turning for ideas (so to speak!) on how to take it to a new level and create an environment which provides uniqueness each week so that the kids who participate each week always want to come back and look forward to something different on a regular basis. It's fun...I enjoy being able to make a lot of decisions and plan a lot of things. My current project idea is to make a couple of fleece, tie-knot blankets of video game characters to use when watching movies on the body pillows! It gets cold in there sometimes...and besides...a movie just isn't as good without a blanket to curl up under, even if it's really hot out! :)

I just wanted to share with you guys something really cool that happened this week. You know I've been frustrated by the worsening of my problems and the recent increased pain, nausea, and difficulty eating. I've still been plugging away and doing as much as I can! But, I do fear the future as I see this headed exactly where it was several years ago, only a lot faster with more problems as I develop new problems believed now to be caused by a mitochondrial disease (read previous notes). There was no guarantee my problems wouldn't return since we didn't know the cause in the first place.It scares me because this can easily suck the life out of me and keep me from doing anything and can leave me homebound. I'm already having a lot of problems with my driving by not noticing things, getting confused where I am, and getting signs mixed up. A lot of that is meds, some is the fact that I do have some slightly advanced brain atrophy for my age due to the native condition probably, malnutrition, and perhaps medication damage because I have had a lot of neurological medication reactions . I'm also losing my hair a lot which is one reason I wear so many hats or bandanas! My pain is a lot worse all over my body and in my gut, and my osteoporosis has worsened. I fall frequently and have a lot of trouble focusing sometimes. The difference between now and several years ago is I have learned a lot more how to manage it and how to work through it. I've trained my brain how to focus on the task I am doing and get it done. I force myself to avoid other distractions as much as possible. I'm not able to accomplish much with a lot going on around me, but if I can avoid that, I focus quite well on the task at hand, Unfortunately, because I have to focus so hard, I often miss crucial things that are going on around me.

Anyhoo, it's been discouraging because when I have to stop and take a breather from G-PACT, which often happens when I need to step back from other people's problems for a while or I just can't focus on things to get them done, I kind of revert to memories pre-transplant when I gradually had to stop everything. I refuse to go there, but my fear has been that I may end up there and I would begin to feel like my life was meaningless, simply laying in bed incapable of walking even five feet to the bathroom. G-PACT has become so incredibly successful since my return in 2007 and thanks to the growth of volunteers, increased awareness of the condition, and the passion younger people have to help us fight. I can't leave anytime soon. I do delegate a lot more as the volunteers are much more knowledgeable about how we operate and more and more capable of taking on tasks I couldn't previously delegate. We now have over 20 volunteers nationwide, way up from the four we had three years ago and 12-15 one year ago! The quality/education of volunteers is increasing drastically as well and we get along so well.

I had a few days last week where I was particularly discouraged because I was so sick I wasn't able to get much done for G-PACT, but there is SO much to do. My list never ends in projects and ideas! It's a full-time job if I'd let it be because I am so creative and always brainstorming, and there are always management issues to deal with as far as keeping things organized and everyone on track. While I love it, I need a break from it frequently due too to the intense nature of the people I deal with on a daily basis.

God continues to bless G-PACT in unfathomable ways. Anyone who doubts that I am in the right field and doing what I am supposed to be doing is not following our work very closely! It's amazing how God is providing for us and how He continually shows me I am on the right path and that our team is making a huge impact. This past week He showed me that in spite of the fact that I do struggle at time keeping up with all of my responsibilities as a leader in this area, and my struggle with my own worsening health problems, that He's not finished with me yet. We continue to be invited to speak and display at conferences and our message is really getting out there in the medical field and media.

On a particular down day, God sent me the most incredible message in the form of a volunteer. She is from the H-burg area, has GP, TONS of Fundraising experience, loads of ideas, and is so passionate she had herself up and running with e-mail and everything in less than a day once we got her started! She is so anxious to work with my life group on organizing a big local event already, but has ideas on how to make our program work on a national level. She will now coordinate all FR events and take a LOAD off of me! Plus, being in H-burg, there are so many events we can pull off locally (and I hope to have the help of some of my LCBC friends and family in the process!!!) hint hint...It's amazing and I have so many stories like this...such as last minute, massive funding and donations coming through making DDNC do-able this past March and so many other things. Whenever things look down and I am getting discouraged, God pulls a God moment and gets my mind and focus back on track. How on earth can I doubt that He still has a future for me and with me, blessing the work G-PACT is doing in spite of the times I get down and wonder myself where my life is headed. Why do I ever doubt that He will always show me the way, and that my life has been spared for a purpose...and how much 4 extra years has given me to help make an impact on the DTP world and get G-PACT more established so if something does happen to me, I am now confident it will all be taken care of by the fabulous volunteers I have now. Some people don't get clear indications that they are doing what God wants them to do...but in my case, I get them frequently and it never ceases to blow me away! Thank you for letting me share a piece of God's work in my life with you! I love hearing other God stories, and hope you were encouraged by this one!

Love you,
Carissa