Wednesday, June 13, 2012

Originally posted Monday, May 7, 2012:

If the phone won't stop ringing...
The e-mail won't stop coming...
The texts won't quit dinging...
and FB won't stop updating...
When life gives you more than you can handle...
or when you feel completely overwhelmed...
Just remember this...
(at least for a little while!)

Escaping to lala land...
Originally posted Monday, May 7, 2012: 

Hold those you love close to you. Let them know you appreciate them. Keep in touch. Thinking about calling them, but don't feel like it? Do it anyway. Even a short conversation is important. Haven't gotten together for a while because your schedule is too full? Make some time. Life gets busy with "stuff," but relationships are too important to let "stuff" get in the way. When you are with them, hug them, hold them, laugh with them, cry with them. Resolve any differences you have with anyone. You never know how long you will have them here to be able to hold them or hang out with again. I have learned this all too well in the last few years. I have a few phone calls to return today.

Understanding God's ways?

Originally Posted, Wed, May 16:

I don't understand God's ways, but maybe that's why I'm not cut out to be God. I just have to trust Him, which is not easy to do. Trusting God is hard, but sometimes I think being God would be even harder. Of course, I'm only human, not omniscient, omnipresent, or omnipotent, but every single day we yell at Him, question Him, tell Him we could do better, ask Him for this and that, blame Him, or completely ignore Him. Yes, we love Him, praise Him, talk to Him, sing to Him, and thank Him too, but if I had all that thrown at me in one day I think I'd turn out the lights on the world and go to sleep. At least I escape through sleep when I can. In the end, even if I dont understand, I don't think there's anyone else who would be any better at the job. How many times would it take someone losing their trust in me for periods of time before I gave up completely on regaining their trust? Yet, he is always there for us to place our trust back in when we have lost it for a while. No. I am definitely not God and I'm not applying for the position. You can stop celebrating now! :)
Originally posted May 19, 2012:

I have to do a little bragging...not for myself, but for my TEAM!!!! TEAM= Together Everyone Achieves More! 

Nothing excites me more than other people who are so passionate about fighting DTP that they get so actively involved in G-PACT, are excited about our work, love other patients, and share the passion and vision that the original founders had in 2001. The vision has never changed, no matter how many times the volunteers and board members have. Why? Because patients need the same thing now that they needed back then- coping mechanisms, supportive resources, education, and hope to get through this now until a cure is found.

While we work with researchers, other organizations, and physicians too, patients need something to get through NOW because a cure will take time. Our goal from day one was to increase awareness, fight for a cure and support research without leaving patients with nothing to help in the meantime. The only significant thing that has changed about G-PACT in almost 11 years (August 23, 2001- date of founding) is the addition of new conditions. We make changes to meet the growing demands as they come, keep up with technology and utilize new resources available for the changing population, but the HEART behind G-PACT remains the same and always will as far as I'm concerned. The needs of patients have never changed and never will, so why change the ultimate mission behind G-PACT? The ultimate need is a cure, but until then we'll do everything we can to help everyone cope and have hope!

Thanks to EVERYONE who is supportive of G-PACT in any way, and especially all those on Team G-PACT who help keep things glowing on a day to day basis and provide a glimmer of hope to so many! I love Team G-PACT! G-PACT couldn't function without the team. Patients would be left behind to deal alone and DTP is already a very lonely and socially isolating condition. What Team G-PACT does is important! And no, I am NOT Team G-PACT. I am just ONE member of the team. I'm just the loudest one, I think...I tend to carry the bullhorn! :) But others do so much too! There are no small parts, only small players. We all come in different sizes, but everyone has an important position on the team!
Original Post: Monday, May 22, 2012:

Full day of non-stop work = a night of Carissa down time without guilt or feeling like another day has been wasted. That's one of the hardest things about chronic illness. No matter how hard you try sometimes to be productive and give your life a purpose, you often feel like days, weeks, months and years are slipping by without any meaning. Sunny days come and you can't go for a walk. Rainy days come and you can't play in the mud. You start to feel like your life is wasting away in bed while you sleep or are too sick to move. Every waking moment you are looking for a way to bring meaning and purpose into your life so you have a reason to keep fighting through the tough days. This doesn't allow for much personal time to just enjoy hobbies or chill out because you feel like any ounce of energy you have should be used productively and wisely to make up for the sick time. This isn't a healthy way to think though because "sick time" isn't "me" time. It's important to allow yourself to just play and enjoy life and not necessarily have anything exceptionally productive come of it. You need to learn to do things that relax the mind, body, soul, and are completely pointless and fun. I say all of this, but it's something I am struggling with learning how to do. Yet I realize the importance of being selfish once in a while for my own sanity and to avoid burnout. So, Carissa time it is. Hasta la vista.
Original post, Tuesday May 22, 2012-

Many know that it's been a dream of mine to write a book sharing my experiences, my insights into life, amazing stories of friends who have inspired me, share my odd humor, and put together a collection of my thoughts and things I have written about on FB, blogged, and papers I have written in the past. I have so much information and have written so much over the last 18 years that I want in permanent print to share with others. I LOVE to tell stories, as you well know. Status updates don't cut it for me when life is happening all around me and I always have things on my mind. So many people have encouraged me to write a book over the years too. I've never done it because I have been too sick, busy, and honestly, a book project sounds like an overwhelming undertaking for me right now. An author almost finished a book with the story of my life up until 2006, but she stopped because I got too sick to help contribute any more to the project. She still has all the materials and says I can have them to finish if I would like. She had an editor interested in publishing it at the time.

A wonderful lady whom I have known my entire life and who was my piano teacher growing up has really been one of my strongest supporters in pursuing this dream. I have seen it as virtually impossible given my time constraints and energy levels. However, the other day she connected me with a lady who works with people to help them collect their stories and thoughts and put them in printed format. She does an hour long free consultation to determine if she thinks she can be helpful in making these types of dreams become reality. Honestly, all I need is a little guidance. I have plenty of information. I just need to organize it and sort through it all to determine what to include and to edit it for a book. Since so much is coping writing, some things are unedited and there will be necessary editing, although I don't want any editing to change the impact my feelings have on what I have written.

The lady who does these consultations wrote me right back yesterday with an interest in helping me do this. She had received my e-mail and a message from my friend, as well, who recommended me for the project.

I am excited to say that I have a one hour consultation planned for this Thursday. I sent her a little background info of news articles, my blog, and the Messiah College video so she can have some solid background before the official consult. She seems excited about helping me so hopefully she can. If she is interested in my story, I will start to work on that as a personal project and maybe I will become a published author in the near future.

I didn't think this would EVER happen, or at least not for a long time, so this is exciting for me. I just hope it works out. It will definitely help me learn better time management skills as I will need to devote a certain amount of time each day or week to focusing on this project! A good deal of the proceeds from book sales will go to G-PACT, of course, and obviously a commission to her too. I need to spend some time digging up a lot of stuff from years back to look over. That part will take a while, but I'm just glad that this could truly become a reality much sooner than I ever thought!
Original post: Wednesday, May 23, 2012; 

"When the days are long and the nights don't end,
and my fears are strong and my scars won't mend
when I'm full of pain and my tears just fall
and I feel like life has hit a wall
I remember this because it's true
These times won't last, each day is new
I know that I must cling to hope 
And never let go of the rope
I tell myself I will get through
I know because I always do!"

-Carissaism, 2012
Original Post- Sat. May 26, 2012:

I love Lego's, naps, LCBC, naps, Jeeps, naps, the Steelers, naps, Troy Polamalu, naps, good friends and family, naps, G-PACT, naps, organ donors, naps, laughing until I hurt, naps, food I can't eat, naps, lime green, naps, funky socks, naps, 72 degree weather, naps, cheese, naps, taking funky self portraits, naps, Facebook, naps. iPhones, naps, video games, naps, good days, naps, getting things accomplished, naps, reading, naps, illustrating, naps, sunny days, naps, hats, naps, classic TV, naps, seeing hair in my armpits (hey, trust me, when chronically malnourished, that's a good thing...), naps, energetic days, naps, Pawn Stars, naps, lots of spoons, naps, online shopping and not going to stores, naps, traveling to conferences, naps. I realize some of these are oxymorons, but it doesn't mean I don't like them anyway!
I'm going to be spending a good deal of time posting things on here that may seem out of date. I post A LOT on Facebook, and I am working on getting all of my FB posts together on this blog where they will always be accessible in one location. So, please bear with me as I work on this and I will try to date everything so you know where they are coming from. Most are always relavent and timing doesn't matter, but some may seem out of order and I will try to make that clear. I would just like for my posts to be in one location and will always try to post here and on FB from now on to keep this blog more current, and to keep people who don't follow FB much informed on my innermost thoughts. I will not be posting my day to days here...only the most beneficial thoughts I always want to keep. 

Being ill is a full-time job

Last Friday was one of those days I needed an on-call aide. I had two errands I had to run. I woke up with a migraine, muscles not moving well, my head was really foggy, and I was too tired to be safe driving! One errand could potentially have waited, but as long as one couldn't I felt like I might as well do the other too. I had to go to HMC to manually pick up my Fentanyl prescription because I was running out Friday and couldn't go all weekend without pain meds. I had to be back by four to start my TPN and I had to get my other fluids going before I left.

Being chronically ill is a lot more work than people think. People think we enjoy laying around sleeping or doing other stuff all day, getting paid to not work (I work my butt off, just don't paid), but don't realize that everything we do takes so much energy and it's A LOT of work to be sick. It's hard to even make it to the bathroom sometimes and getting dressed often takes several phases with a lot of rest in between the shirt and the pants. It takes so much work to do the simplest things. There's meds to keep up with, IV fluids to hook up to, TPN to run every single night, doctors appointments, dealing with the whole medical system, insurance issues, phone calls all the time to docs, pharmacies, home health, paperwork to sign and mail back in. Most of the time we are even too tired to pick up the phone and make these calls. Some days I can barely talk. We don't just lay around doing nothing. It's A LOT of work to try to be as healthy as possible and everything takes at least twice as much energy...usually even more. Getting a shower is an overwhelming thought most days and all I want to do when done is take a nap! We work hard and on top of that, we have to fight a lot of tough emotions, fears, frustrations, and challenges that come with this.

We are not lazy. We work really hard, it's just in a different way than most people. But we work JUST as hard, or even harder. We don't get a vacation either. It's a 24/7/365 job. We can't call in sick either. I have to hook up to my fluids and TPN every single day no matter how I feel or how much energy it takes. I have to take my meds all day long regardless of how nauseous I may be or if I am in the middle of a nap. There is no break, there is no choice.

Saturday, May 26, 2012

When God says "no" He has another plan

I had a five organ transplant in 2006- small bowel, pancreas, liver, duodenum, and stomach due to conditions that paralyze the GI tract- gastroparesis and chronic intestinal pseudo-obstruction. When I arrived at the transplant center for initial evaluation, I was 68 pounds and starving to death. The doctors at the University of Pittsburgh said I was so late in arriving and should have been done a long time ago. They weren't sure I would survive long enough for the transplant. Typically, the wait for these transplants is about 3-6 months. I was too sick a lot of times when they got a call for organs for me that my surgeon couldn't do it. I also got three or four false alarms where I was called, told they had organs, went in to the hospital for all the pre-op prep, and then last minute was told there was something that didn't quite match and sent back home. That was always devastating because I had my hopes built up, and then they were dashed as I continued to get sicker and sicker and my time was running out.

In the initial transplant testing, my liver didn't look perfect, but they thought that it would reverse itself once I had the new organs. The surgeon told me if the organs came with a liver, he would do it, if not, we weren't going to wait for that. At about the one year wait mark, I got a call and was told the organs were an absolute perfect match. They hadn't seen a better match before. I was within minutes of being wheeled into the OR when the surgeons came down and said that the organs did not come with a liver, and the way my anatomy was they would not be able to hook up the new small bowel to my original liver. I was devastated because I had already waited a year, most of my friends had been transplanted, I was 62 pounds by then, and I was running out of time. I cried and shut myself in the room we were staying in all weekend. I was depressed and angry. I thought the organs would never come in time and I would not receive my gift of life.

It was another three-four months before I got my next call. I was in the hospital at the time with perhaps a week left of life. Mentally, I had already "checked out" because of the extreme malnutrition and poor state of health. I don't rememeber the last few weeks pre-transplant. The docs came up and told me that these organs were even better than the others and an absolute perfect match. I was prepped all night for the surgery and taken down to the OR. This one was a go! When I woke up in the TICU (transplant ICU) a couple days later, I was informed that I had received all five organs, including the liver.

What is amazing and a God given gift, is that the docs said that although my testing showed my liver wasn't in horrendous shape and they expected it to reverse and heal after the transplant, once they got in there and actually SAW my liver, it was twice it's normal size and full of fatty deposits. They told me if the organs had not come with a liver and they hadn't transplanted it, that I would soon have been placed on a waiting list for a liver. I would have had to go through a separate transplant for a liver. This would have increased my risk of rejection of all organs because it's much better for all five organs to come from one donor. Plus, my liver may have failed before I could get another one.

I look back to that and realize God had said "no" to the organs that looked so promising a few months before because He knew I needed a liver too. It was worth the extra 3-4 month wait because it spared me from so many other complications and I am so much healthier as a result of getting all organs from one donor!

One of my favorite quotes is "When god shuts a door, he opens a window." God taught me a lot through that experience. While several calls were no go's and I was in fear for my life, He had me right where He wanted me and was in total control of my situation. In spite of my anger over the long wait, He continued to show me His love and did not give up on me even though I had given up on Him.

Thursday, March 29, 2012

This is long, but it has been a crazy day and a lot has happened. I'm just feeling overwhelmed. I want to thank everyone who regularly prays for me and those who care about me. So many are sharing this journey with me, and although few can relate to my physical battle and the complexity of transplant issues mixed in with other issues, you are still putting your arms around me, holding my hand, or helping me wipe away the tears that come when sometimes I just don't know how much more I can take. So many have let me know that you are not bothered by me sharing my reality so openly and have told me that you want me to be honest and to be Carissa. I appreciate everyone who wants all of me...who wants me when I am happy, fun-loving, and joking around, but who also want me when I am frustrated, scared, or struggling. Thank you for not making me feel like I have to wear a mask, but that I can be open and honest and you will be with me no matter where I am at that particular moment. You are doing what you can to help ease my burden by showing your love to me and encouraging me to keep going when sometimes I just feel like I can't handle any more. You are true, 100% genuine, high quality friends and I hope that I am the same kind of friend to you...someone you feel you can come to at any stage in your journey and know that I want all of you too...

Today has been a really stressful day trying to figure out what to do with my health situation. They have all been calling me (my home infusion company and Pittsburgh) all morning with concerns. It's just a really long and complicated story. But if you follow me at all, you know that one reason why I have been slow to call Pittsburgh recently is because it is hard for me to handle it when the best intestinal transplant team in the world asks ME what to do because they just don't know.

Today I started crying on the phone when, after I told my transplant coordinator that I am still so sick, not tolerating tube feeds, my electrolytes are so unstable, and my energy is so low, she said "I just don't know what they (Costa or Kareem) can do." I heard exactly what I feared I would hear...I just didn't expect to hear it today before I even got up there...

Anyway, she is working on arranging a visit in April where I will see either Costa or Kareem. She also wants their new transplant surgeon to sit in on my consult to see if maybe he will have a fresh idea that could help me that Costa and Kareem may not have thought about. They'll do a biopsy to look for rejection since it's been a while. I am also due for my annual bone density scan and appointment with my osteoporosis doctor. So, I will be there at least a few days to get all of that in. I am scheduled to see genetic at Children's Hospital of Pittsburgh again in June to continue to look into genetic conditions, but I can't wait that long to see transplant and deal with the GI and nutritional issues.

On top of that I told her that, in my opinion, I think it is time to have a pair of fresh eyes from a GI doctor who knows more about GP, CIP, DS, and the newly suspected achalasia than my doctor at HMC does to take a look at the situation and see if he has any fresh insight. She agreed that it is at least an option and is setting me up with a GI doctor there whom everyone loves. Although he deals primarily with Crohn's patients, she feels like he would also be fairly knowledgeable about all of my issues too and if I wanted to see him, she'd set something up. I don't know if he will have any new ideas, but I just want to pursue any options I can before I decide that going back on TPN really is the only way I have left to go.

My potassium has been running low for my last three blood draws, so my home infusion company is working on contacting my PCP to see if I need more potassium in my daily IV infusions. Unfortunately, this would mean an additional two hours hooked up to my IV pump (from 12 to 14 hours) on top of being hooked up to my tube feeds 24 hours a day. It's ok in the sense that I am home in bed 14 hours a day anyway so it won't affect me in terms of limiting what I already do outside of my home (I am not strong enough to carry around two pumps and two bags of formula/fluids outside of the home. The biggest issue is that due to the long period of time the potassium will infuse, I will need an additional dose of IV Benadryl halfway through in order to prevent a reaction and I am already so tired from the one dose I get every day that I am not interested in adding another dose to that.

I guess the GOOD news of the day is I did hear from the Office of Independent Living Opportunities in York and they are coming out on Friday afternoon to take the next steps towards me getting an aid to help me out at home. This step is the one where we will discuss my needs, determine how many hours of help I will need per week, and what types of services will be most beneficial. This is a step in the right direction and hopefully I will finally have that assistance very soon. This will help me out a lot by reducing my feelings that I am a burden on my parents. They have NEVER EVER EVER made me feel that way and would do anything for me I know, but I also know that my limitations do add extra work for them and the aid will help me feel like I am less burdensome on them which will reduce my stress and some of the frustrations I have with not being able to care for myself more. They are also happy that this person will be able to help me out and that it will relieve them of some things for them too. I am also hopeful that she will be able to help me stay more organized with G-PACT and be able to be more efficient there. My parents will probably feel safer when traveling knowing that someone is coming in several times a week to help me with basic needs like changing my bed, doing my laundry, helping me shower, keeping my place more sterile, run some errands if I am too low on energy to drive, etc. So in all this mess of the day, that is one encouraging thing.

I am mentally, physically, and emotionally exhausted so I am going to rest now and try to get some sleep. Thank you so much for all the prayers. I know so many have been lifting me up because in spite of it all, I really am in pretty good spirits most of the time and still fighting to maintain as much activity as possible and not let this take over my life.

Sunday, January 29, 2012

It's just...complicated!

"Blue Lightning Jeep" and me on a summer day in 2010 when I had an NJ tube

"Gastro what? Oh, I have that. Everybody does. That's just reflux. Just take some Tums. Pseudo- HUH? Oh. Just avoid salad and you'll be fine. Salads makes me sick, too. I have IBS. Five organ transplants? Why did you need five organ transplants? Kidney? And what else?"

"No, no, no...!!! It's not that simple!"

Having one rare illness is frustrating enough, but when you have a number to deal with, it only adds to the amount of hair you pull out in a day...if you have any hair to begin with after meds, malnutrition, and stress. Trying to explain it all to medical personnel, even in some of the best hospitals is challenging enough, not to mention trying to explain it to your typical layperson.

I have suffered from a number of conditions for 18 years that have left me unable to eat, work, or function in any normal capacity. My life has pretty much been swallowed up by long medical terminology and complicated scenarios. As if figuring out how to treat one rare condition isn't difficult enough, getting doctors together on the same page for a number of conditions is like getting a Steelers fan to convert to a Ravens fan- it just doesn't happen!

In 1994 I was diagnosed with a condition known as gastroparesis, or GP. It literally means "paralyzed stomach." Gastro- Stomach. Paresis- Paralysis. I also suffer from Chronic Intestinal Pseudo-Obstruction, or CIP/CIPO. CIP literally means "false intestinal obstruction." Pseudo- false. Obstruction, well, doesn't that speak for itself? CIP is a condition in which the small bowel forms blockages/obstructions in the absence of a mechanical obstruction. Basically, when I eat, food gets stuck in my small bowel and while it doesn't actually obstruct the bowel, it blocks it off completely so that nothing can go through. Thus the term "pseudo-obstruction" means "false" obstruction because it acts like an actual bowel obstruction. In spite of how easy the terminology seems to me to understand, it's not to most people who are not surrounded by medical terminology and even medical personnel. It's even more complicated to treat!

These two conditions led to my need for a five organ transplant. No. Not FIVE organ transplants. ONE transplant of five different organs. And no, a kidney was not one of them...they do transplant other organs besides kidneys...

Picture of me which appeared in the Pittsburgh Post-Gazette in Dec 2005, three months before my transplant. Taken at Montefiore Hospital. 

On March 13, 2006 I was given the gift of life at the University of Pittsburgh Medical Center when I received a small bowel, stomach, pancreas, liver, and duodenum due to total gut failure. My entire GI tract had quit working, I was 62 pounds, and starving to death. I had been on TPN, a form of IV nutrition, for years and lost all my veins for central lines due to frequent sepsis. The TPN caused liver damage resulting in my need for a new liver.

After the transplant, I also developed a condition known as dumping syndrome. The pyloric sphincter was damaged during the transplant and that means that sometimes my food empties TOO fast from my stomach- quite the opposite of gastroparesis. So, not only am I juggling a number of rare conditions, I am dealing with conditions that are opposite of each other! The diets are complete opposites and I never know which one is going to act up that day, or even from one hour to the next! But it doesn't end there!

On top of the GI issues, I also have a rare heart condition known as long QT syndrome. Long QT is an electrical abnormality of the heart. Although genetic, this condition is triggered by low potassium and certain medications. Which medications? Any medication used to stimulate the GI tract to digest (motility medications) and most anti-nausea medications. The medication used to treat my dumping syndrome also has a warning that it can cause sudden cardiac death in people who have a long QT interval. Been there, done that on the motility medications. I don't recommend it. Aye, aye, aye! Plus, that medication also CAUSES gastroparesis. So, if I try to treat the dumping syndrome, I only make the gastroparesis worse AND I put myself at risk for heart complications.

As if that weren't enough, I also lose potassium at an alarming rate, even IV potassium. There is a possibility I have another rare genetic condition, a hypokalemic periodic paralysis, which causes my body to shift potassium from my bloodstream and into my muscles and causes drastic and sudden drops of potassium, even in IV form and when not exhibiting any loss through my GI tract or kidneys. Again, low potassium can trigger my long QT and send me into potentially fatal heart arrhythmia's. I am rare. I am very rare. Not only is this combination of problems rare, perhaps even non-existent in anyone but me, but not too many people have survived six episodes of cardiac arrest!

In addition to all of those, I juggle a number of other conditions which are the result of years of malnutrition, treatments, or caused by some rare, underlying condition yet to be discovered. Basically, I am a mystery. A conundrum. Unique. Complicated. Special. Oh, the number of terms that have been used to describe me over the years are are numerous as the pages in my medical records!

Just imagine trying to explain one of these to a physician on a trip to the ER, much less getting into all of them and how they interact and work against each other. Then imagine being half asleep and sick, tired, and trying to explain it all! One doctor thinks his or her treatment option is a must, while the other claims that it will aggravate something else and isn't an option. Then a third chimes in that neither will work well, and this other treatment is the only way to go. Finally, a fourth comes to the conclusion that nothing should be done. Just live with it. It has gotten to the point that my doctors ask me what to do now. I don't know. Just let me get some sleep. I'm tired of all these questions. It's just....complicated!

I am the founder and president of the Gastroparesis Patient Association for Cures and Treatments, Inc. G-PACT is a 501(c)(3) non-profit organization founded on August 23, 2001 to help fight gastroparesis and chronic intestinal pseudo-obstruction, collectively known as digestive tract paralysis or DTP. Check out our website at, like us on FB at, and follow us on Twitter at 4GPACT.

Thursday, January 12, 2012

Ups and Downs

Life is full of ups and downs, smiles and laughs, and tears and frowns! Some days are great and life seems grand, while others are tough, too much demand! It's hard to know what each day holds, every minute it changes as life unfolds.

I cherish the moments when life is up, and halfway full is my sippy cup! But during the down times it's hard to see, that maybe the next day is different for me.

It's hard to not be able to plan, but I really do try the best I can! I still have hope and that helps me cope, but I fear the unknown, as new problems I'm prone.

I still love life, in spite of the strife, but when times get rough, I don't feel tough. And the longer this goes, pain from head to toes, while sleeping so much, pain just to the touch, it's hard to feel, like this ever will, come to a good end, or just always descend.

I believe in my God, he can heal my bod. I do understand, He has my life planned. But sometimes I wonder, when everything's thunder, why He trusts me so much, with big plans and such?

I have grown through this, things I'd really miss, if I never learned, how would life have turned? But have I learned enough, about all this stuff? Is there still more to know, about sickness and woe?

I just have to pray, and then I can say, that although this does suck, it's not just bad luck. There's a lot to gain, and He keeps me sane. He's always there, and He really does care. He never promised a life of ease, and all my concerns He knows and sees.

I Peter 1:6-7:
6. So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while.

7. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.

Wednesday, January 11, 2012

The im-PACT- it comes from you!

You know what was so cool for me today? I woke up at 3 AM this (Monday, Jan. 9) morning, groggy, but unable to go back to sleep. Naturally, I logged on to Facebook to make sure nothing world changing had happened since I had fallen asleep three hours earlier.

One of the first things I noticed was the post of an awareness video put together by teen GPer, Megan Kondilas. Megan is an administrator of our Gutsy Teen Lounge support group and has been very active in GP awareness and support since not long after her diagnosis. I immediately posted it on the main G-PACT YouTube page, my personal profile, and in all support groups. Although a number of awareness videos have been done in recent months by individuals sharing personal stories, this one captivated the faces of so many different people all in one and related a common story that we all share. I found it powerful, not only that a teen had put it together on her own time while not feeling well, but that so many people had sent in pictures to get involved in the project in order to increase awareness. The desperation and outcry for attention to our needs was clear.

I started to "like" all of them that were posted in my News Feed, but I think I ran out of energy before I hit them all! My News Feed is loaded with posts and re-posts of this video and people pleading with loved ones to watch it so they can better understand gastroparesis and the devastating effect it has on us by requiring feeding tubes and TPN in many cases, gastric stimulators, and frequent hospitalizations. But it wasn't a video of hopelessness either. It showed that we are still trying to live as normally as possible through images of us performing normal activities and hanging out in everyday environments outside of the hospital setting.

One thing has become increasingly clear to me over the past year especially. G-PACT patients have become a force that can no longer be ignored or blown off. We are passionate. Most of us have never met in person, but we are making an im-PACT across this country and even in other parts of the world. We love and support each other, no matter how far apart we may live. This year will bring about new videos, even more awareness, greater advocacy, new programs, fresh ideas, and potentially some new drugs and further research and funding into Digestive Tract Paralysis. We may have weak guts and weak bodies, but we don't have weak minds or weak spirits. We are here to FIGHT in 2012 harder than ever. Tears streamed down my face as I looked back over 11 years to where we were on August 23, 2001, the first day of official operations. We had hopes and dreams then. We discussed working together to help provide patients with coping mechanisms until a cure could be found, but the possibility of a cure at the time seemed hopeless. The years have been challenging and there have been moments when we have wanted to give up. There have been long stretches when it has seemed like all we have hit is brick walls. However, those hopes and dreams of the original founders have only grown recently as we have seen so many taking the initiative to fight now too. So many are picking up the sun rays with us to help "rays" awareness. As a result, we are starting to get the attention we deserve. TOGETHER we CAN and ARE making an im-PACT!

Keep your eyes open over the next few days as we post information on things that you can do to get involved. Everyone can do something! Whether it is as simple as sending in a picture for a video or the website, being a blogger on our blogspot page, or organizing a 5K for a National DTP Awareness Day, everyone can play a part in fighting these devastating conditions. Stay tuned! Progress is being made. You CAN help G-PACT make an im-PACT! We love our fans!

To view Megan's video, go to

Please pass it around!

Carissa Haston, on behalf of the G-PACT Team
I wish I could be there for you
and hold your hand to get through
And give you the cure
and a future more sure
take away all the pain
no more need for a cane
make you able to eat
and stand on your feet
no more crying or tears
only dreams and eased fears!

I too struggle much!
I long for a touch
sometimes all I need
is a soft word, indeed!
that you have me in mind
when I'm in a real bind
or just that you care
and you wanted to share
if there's nothing to say
let me know that you pray
and that's often enough
to help me stay tough

I want to give you dreams!
and lots of sun beams
help you stick to the fight
and say "it's all right"
But I really don't know
how long this will go
seems there's no end in sight
we're in a tough plight

But one thing I see
is the fight to be free
and to never give in
the desire to win!
So hold your head high
and coninue to try
to dance in the rain
in spite of the pain
hold on to the hope
it will help you cope!

Know I'll be there for you
I feel what you do
I'll help you endure
while we search for the cure
my heart often breaks
all the lives that this takes
but some battles we've won
soon the war will be gone
You just have to believe
soon we'll have a reprieve!

Carissa Haston, 2012
To all my friends who are fighting DTP on a daily basis
And my loved ones and friends who support me through my own battles
I love you all and thank you for being there and not giving up me!