You don't appreciate life as much until you've almost lost it. Once you are given a second chance, you really realize the meaning of it and how fragile it can be. So few people have the opportunity to re-evaluate life and the meaning of it.
My life isn't like "It's a Wonderful Life" in that I was never born, but I see it as if I have had the same opportunity to see what changes I can make to make the world a different place. I have learned this at a very early age. I appreciate life so much more! I get excited about the teeniest things that most people see as mundane and routine.
If something goes wrong, I'm normal and I DO complain, but I quickly try to straighten out. Problems are problems and they are tough. Life is tough. It is what it is. Some of us have been forced to tackle incredible challenges, while others have experienced a relatively normal life with relatively normal problems. But, we all have our struggles and I don't believe that anyone's problems are minor. They are all a big deal and have a profound influence on us. We grow through them, regardless of what they are. I want to hear about the struggles of everyone, regardless of how "minor" they may seem in comparison. I care about your concerns. They matter to me too! God must have really big, active, and perfect ears because He hears from me all the time!
People often ask me how I do it. How do I deal with so much? I don't really have any choice! No, it's not easy. No I am not always as strong as I appear to be or as I say. I'm just glad I'm still here to experience the problems and work my way through them. I am a stronger person for it. I get stronger all the time.
Going through a transplant is TOUGH. The process, the fears, the unknowns, the loss of others not so fortunate, the complications that arise, the complications expected to arise from long term-medications, and feeling lost in a world where people haven't had the same experiences. Trying to balance out my health life with any sense of "normalcy" like a job, having a family, living on my own, and having energy to spend time with friends and just hang out is challenging. I want to be "normal" in terms of life activities, but my body too often has its own plans. Some days I am too weak to get out of bed, while others I am energetic and ready to conquer the world. I never know what each day will be like. None of us do, but it's much more real and unstable for me.
I can be happy, jumpy, and feel well for half a day and be in the ER or hospital later that same day. I can look really good for a while, and then I crash out and can't move. I can be out driving, and then have to stop to avoid falling asleep at the wheel. I can feel well, then eat a piece of cheese or a few crackers and be sick the rest of the day. But, I am a fighter. I know I am strong.
I don't always feel strong though. Sometimes I just want to cry and cry and cry. I want to scream, throw pillows around, and shut out the world. Sometimes it doesn't seem fair. But life isn't fair. I don't know why I have been through all of this. All I know is that I can't imagine what my life would be like if I hadn't. What would I be doing? Would I be better off or worse off? Would I be as strong? Would God and relying on Him be as high of a priority in my life? I can't imagine my life any differently. I don't know it differently. Not that I wouldn't love to be functioning as my healthy friends and loved ones, but I'm not sure I really "miss" it because I don't really know what I'm missing out on. Maybe a day in the life of YOUR shoes would help me understand. But, I'm not sure I could handle the pain of experiencing a day in the life of an average person and really realizing what I have lost. Or perhaps, the pain wouldn't be as strong because I will realize what I have gained too. The things that you are missing out on because you haven't shared the good side of my experiences.
To the outside world this is horrendous. Yes, there are times that are horrendous and I want to give up, but I honestly don't know life any other way and perhaps that's one way I can cope. I've learned to adapt, change, and work through each new complication as it arises. I've had to become flexible. The fact is, God always comes through for me and gives me what I need to deal with each situation that arises. He will never allow me more than I can bear. When I feel like it is too much, He will always be there to supply all my needs. The feelings of His provisions when I am absolutely desperate and at His feet is something that can't be matched. Oh how He loves me so! He has been there for me in amazing ways over the past few weeks. I have felt His presence in the midst of some pretty tough challenges and He has brought me through in His own unique and loving ways.
What has this given me? I have to focus on that rather than what it has taken away. While it has robbed me of so much, it has given me so much more I believe that only a few people who deal with the same situations can obtain. Compassion unmatched by anyone who is not in my shoes. The opportunity to help others in ways I never would have had. I've met some incredible people who I can't imagine not being part of my life. I have matured and grown in ways that many people never do. I have an understanding and appreciation for the finer things that people don't notice. I love Mondays! Monday is another day of the week to cherish and live out the second life I have been given. It's not a day to dread!
I LOVE life. I say this all the time, but I LOVE LIFE! Even with its challenges, its ups and downs, discouragements, fears, overwhelming sadness, devastation, there is so much GOOD! Just look around you! There is so much to enjoy in life! So much to learn, so many people to meet, so many things to experience!
I LOVE people. I love helping people. I love being around people! All kinds of people! I used to not be as accepting of such a wide range of backgrounds, but now I LOVE everybody! I realize that everyone has a purpose in life. Some make bad decisions, some try to hurt me intentionally, some don't understand me, but it's ok. God loves everyone...EVERYONE. I strive to do the same.
It's so easy to feel useless in this world when you can't keep up with others or give back as much due to limitations. Your life matters. Whether you are homebound, unable to work, unable to give much back to society, whether you are brilliant or mentally challenged, a president or a pooper scooper, what you do is important. Somehow, somewhere, your life has had an impact on someone. That someone's world has been changed because of you. If that's all that you ever feel like you have accomplished in life, you have changed the world!
In a recent Carissaism I stated "Some people write and others speak. Some build and others destroy. Some see the glass as half-full, others half-empty. Many lead, others follow. Some are outgoing, others shy. Some are anxious, others calm. Some work ahead, others procrastinate. Some enjoy a busy schedule, others like to be free. We all have our differences. We don't always agree. But when we all come together, what an impact we can be!"
Make a difference in your world today! Even the simplest things matter!
Showing posts with label chronic intestinal pseudo-obstruction. Show all posts
Showing posts with label chronic intestinal pseudo-obstruction. Show all posts
Saturday, May 7, 2011
Saturday, October 2, 2010
Following Christ- my story of "knowing" but not really "knowing"
For those of you who have known me for life, this will be surprising. I'm not sure what happened in my life. I grew up believing in God and never doubted His existence, but I don't feel like I ever made the fully informed decision to follow Christ. I walked the walk and knew the talk. I was well behaved, but my heart was never in my faith and I never had the passion or love for God or others that I should have had. I had some traumatic experiences post-transplant, as mentioned in my story below, that brought me flat on my face. I had been struggling and came to the realization that I truly had never placed my life fully in His hands.
I don't know if I became a Christian at the age of four and just never developed a relationship with Jesus or if it was not until after my transplant after my traumatic summer. All I know is something happened to me in August 2006 that totally turned my life around and I haven't been the same since. I had times growing up where I felt like God was guiding me and in my life, but overall I kind of shut Him out and relied on myself. This has been a hard thing for me to share and be open about because it has been assumed my whole life that I was a Christian, even by myself. I didn't come to the realization that I might not be until I couldn't feel him with me during my time of greatest need. I wasn't able to connect with Him until I asked Him to come rescue me and forgive me for everything and committed everything to Him. Even though difficult to admit I may not have become a Christian until the age of 28 when always assumed otherwise, this has been an important step to me in sharing my story is so important to reach out to others. It was not a decision I made lightly on a whim. I had been thinking about it for years. I wanted to make sure that the decision to get baptized was mine, I understood the stand I was taking this time, and that no one had an influence on the decision- I needed to make it alone to know that I was following God's command to be baptized in obedience to Him. I am not ashamed of the gospel!
The fact is, it doesn't matter WHEN I became a follower of Christ. The important thing is I know NOW for certain and have no doubts. I've been confused about this for a long time...was I a believer who just fell backwards and got so far away from my Savior that I just never felt close to Him? Or did I never give Him my life in the first place? At the age of four, it's hard to tell if you've truly had a life change. But, my passion is strong and it drives me in everything I do. I am not the same person I was before. God is amazing and there is no doubt He exists and is very, very real and loves me and you so much!
The following story was read as I pinned my message to Jesus on the cross, walked across stage with my dad who has played a large role in my spiritual growth/salvation regardless when it was, and then stood in the nice warm pool. I shivered all the way to the bathroom to change clothes. I did NOT want to get out! Lucky Mike who got to stay in there for most of the service!
Ironically, two of my close friends also decided, independently, to get baptized on the same day. Then we found out we had even picked the same service! It was cool to share the day with others who have also had a spiritual influence on me and we are doing life together.
For those of you who may not know, Baptism is a public way of telling everyone that I am a follower of Christ and have fully dedicated my life to serving Him in whatever capacity He has for me.
The story as read during baptism:
I’m the Founder and President of the Gastroparesis Patient Association for Cures and Treatments. G-PACT is a non-profit increasing awareness of gastroparesis and chronic intestinal pseudo-obstruction. I have struggled with these conditions for 16 years. I also volunteer with the kidcrew in The Wheelhouse and do office work for LCBC. I’m involved in a singles Life Group, am a rabid Steelers fan, and edit books my dad develops on leading others to Christ.
When I was four I prayed to trust Jesus. I was baptized, but I didn’t understand the significance. I never felt much love for others and was selfish. I didn’t rely on God to get me through tough physical challenges. I never truly felt His presence in my life.
On March 13, 2006 I received the gift of life when I survived a five organ transplant at the University of Pittsburgh. I encountered problems after the transplant which left me in desperation. No one understood what I was dealing with and I felt completely alone. My dad realized I was struggling and he took me through the first discipleship book in the series I now edit. In August of 2006, I recognized the sacrifice Jesus had made for me. Then I made the informed decision to be a fully devoted follower of Christ.
When I trusted Jesus, there was instant peace. He calmed my fears. I felt like my prayers actually went somewhere. I knew then that, no matter what, I was going to be ok whether on earth or in heaven.
Now I am passionate about connecting others to Jesus through G-PACT, LCBC, life example, and sharing my story. I don’t fear death and recognize the importance of living every day to the fullest. My life has been spared for a purpose. God has been doing incredible things and he has a very important plan for me.
I want to be baptized today because I want to express my commitment of two new lives to Christ. Last week I celebrated the four year anniversary of my new physical life as a recipient of a new digestive tract! Without that new physical life, I would not be celebrating my new spiritual life as a fully-devoted follower of Christ today.
Baptized March 23, 2010 at LCBC Harrisburg on Chambers Hill Road
Pastor: Mike Albon
I don't know if I became a Christian at the age of four and just never developed a relationship with Jesus or if it was not until after my transplant after my traumatic summer. All I know is something happened to me in August 2006 that totally turned my life around and I haven't been the same since. I had times growing up where I felt like God was guiding me and in my life, but overall I kind of shut Him out and relied on myself. This has been a hard thing for me to share and be open about because it has been assumed my whole life that I was a Christian, even by myself. I didn't come to the realization that I might not be until I couldn't feel him with me during my time of greatest need. I wasn't able to connect with Him until I asked Him to come rescue me and forgive me for everything and committed everything to Him. Even though difficult to admit I may not have become a Christian until the age of 28 when always assumed otherwise, this has been an important step to me in sharing my story is so important to reach out to others. It was not a decision I made lightly on a whim. I had been thinking about it for years. I wanted to make sure that the decision to get baptized was mine, I understood the stand I was taking this time, and that no one had an influence on the decision- I needed to make it alone to know that I was following God's command to be baptized in obedience to Him. I am not ashamed of the gospel!
The fact is, it doesn't matter WHEN I became a follower of Christ. The important thing is I know NOW for certain and have no doubts. I've been confused about this for a long time...was I a believer who just fell backwards and got so far away from my Savior that I just never felt close to Him? Or did I never give Him my life in the first place? At the age of four, it's hard to tell if you've truly had a life change. But, my passion is strong and it drives me in everything I do. I am not the same person I was before. God is amazing and there is no doubt He exists and is very, very real and loves me and you so much!
The following story was read as I pinned my message to Jesus on the cross, walked across stage with my dad who has played a large role in my spiritual growth/salvation regardless when it was, and then stood in the nice warm pool. I shivered all the way to the bathroom to change clothes. I did NOT want to get out! Lucky Mike who got to stay in there for most of the service!
Ironically, two of my close friends also decided, independently, to get baptized on the same day. Then we found out we had even picked the same service! It was cool to share the day with others who have also had a spiritual influence on me and we are doing life together.
For those of you who may not know, Baptism is a public way of telling everyone that I am a follower of Christ and have fully dedicated my life to serving Him in whatever capacity He has for me.
The story as read during baptism:
I’m the Founder and President of the Gastroparesis Patient Association for Cures and Treatments. G-PACT is a non-profit increasing awareness of gastroparesis and chronic intestinal pseudo-obstruction. I have struggled with these conditions for 16 years. I also volunteer with the kidcrew in The Wheelhouse and do office work for LCBC. I’m involved in a singles Life Group, am a rabid Steelers fan, and edit books my dad develops on leading others to Christ.
When I was four I prayed to trust Jesus. I was baptized, but I didn’t understand the significance. I never felt much love for others and was selfish. I didn’t rely on God to get me through tough physical challenges. I never truly felt His presence in my life.
On March 13, 2006 I received the gift of life when I survived a five organ transplant at the University of Pittsburgh. I encountered problems after the transplant which left me in desperation. No one understood what I was dealing with and I felt completely alone. My dad realized I was struggling and he took me through the first discipleship book in the series I now edit. In August of 2006, I recognized the sacrifice Jesus had made for me. Then I made the informed decision to be a fully devoted follower of Christ.
When I trusted Jesus, there was instant peace. He calmed my fears. I felt like my prayers actually went somewhere. I knew then that, no matter what, I was going to be ok whether on earth or in heaven.
Now I am passionate about connecting others to Jesus through G-PACT, LCBC, life example, and sharing my story. I don’t fear death and recognize the importance of living every day to the fullest. My life has been spared for a purpose. God has been doing incredible things and he has a very important plan for me.
I want to be baptized today because I want to express my commitment of two new lives to Christ. Last week I celebrated the four year anniversary of my new physical life as a recipient of a new digestive tract! Without that new physical life, I would not be celebrating my new spiritual life as a fully-devoted follower of Christ today.
Baptized March 23, 2010 at LCBC Harrisburg on Chambers Hill Road
Pastor: Mike Albon
Wednesday, July 7, 2010
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!
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!
Tuesday, February 23, 2010
Just Imagine...
Can you imagine never being able to eat again? Hooking up to IV nutrition or tube feedings every day in order to live? Carrying your nutrition on your back all day or being attached to a pole all night? Or, simply having to "survive" on chicken broth, Ensure, and small bites of food all day long? And in spite of that, still dealing with malnutrition, dehydration, weight loss, abdominal pain, nausea, and vomiting on a daily basis?
Frequent trips to the ER and hospital become routine...just a part of life. Social activities are non-existent because most of them involve food. If you do go out, you end up ordering water, maybe a soda, and pulling that pack of crackers out of your purse to nibble at. You feel fortunate that you are even capable of keeping that down, realizing that many people in similar situations can't. Making plans is a challenge. You may feel well and up for an outing, but then while out the symptoms attack and a planned fun-filled evening becomes a drag very quickly. That's what life with gastroparesis and intestinal pseudo-obstruction is like.
These conditions are so poorly understood. They are so hidden that people often don't believe they are real or are not as serious as they actually are. Although difficult to understand, patients suffering from GP and CIP may look completely healthy. They may drive, work, shop, go to church, take care of a family, and look great on the outside. Their color may be nice, they may look strong and energetic, and they may appear to be feeling well. Yet, the turmoil churning within them is by no means normal.
Remember the last time you had the flu. After 24 hours of nausea, vomiting, perhaps diarrhea, and aches and pains, you couldn't wait to get back to work and your normal activities. As you tried to return to your routine activities, however, you did notice you felt weaker than usual. It was more challenging to get things done because you had a day of surviving on toast, crackers, and soup...not exactly a champions dinner!
Now, take that day and multiply it by years. Add medication, medical procedures, hospitalizations, chronic malnutrition complications, invasive treatments, surgeries, and additional illnesses that develop over time. You are getting closer to understanding what life with GP and CIP is like, but you are still not there.
On top of the physical issues, because the conditions are so poorly understood, people with GP and CIP often have to live with the challenges of stereotyping by society. It is often believed that patients are exaggerating their conditions because they don't "look sick." Others believe those who suffer really just have an eating disorder and use a "mild" condition as an excuse for not eating well. People simply don't understand that a couple sips of soup can send one's gut into a frenzy and result in hours of nausea, abdominal pain, and vomiting. Sometimes this lasts even for days. One wrong bite of food can result in a bowel obstruction and trip to the hospital for an NG tube for suction or surgery to remove the blockage. There are no cold and flu treatments to help symptoms or treat the conditions at all. At best, patients can try some anti-nausea medications with nasty side effects, or drugs that are so expensive insurance companies only provide 12 a month...so they have to decide which 12 times a month they are sick enough to take it. On top of that, any drugs that may help are pulled from the market and no longer available. Once that is removed, even if restarted through compassionate clearance programs, they never quite work as well again. But the odds of getting on that program are slim to none. They feel like everything has been taken away from them...not only health, a normal life, food, and even friends and family who jump ship, but the only treatment that keeps them even somewhat functioning.
Think back again to the day you had the flu. You probably did not want to lift your head off the bed or couch. You felt too weak to make it to the bathroom. Every time you sat up, you felt your head spin and the nausea increased even more. Finally, it was a battle of determination to force yourself up and walk to distance to the bathroom. While you were up, you tried to grab as many items as you needed so you didn't have to get back up again for a long time. By the time you get back to bed, you were so weak and wiped out that all you wanted to do is sleep or watch TV. But you couldn't get your mind off the nausea. It was so overwhelming that you curled up into a ball on your side and just waited for it to pass. You took flu medication in hopes of sleeping it off and had hope that tomorrow would be better.
People with GP and CIP don't have that hope that tomorrow will be better right now. Each day varies and some are better than others, but inevitably the bad days will always come back. There are limited options to treat symptoms, but they don't work well. Patients are basically told to "live with it." In some cases, it can't be lived with. While most people with GP get by on what is available, because there are no other options, quality of life is certainly very poor. Many survive on less than 1,000 calories a day, severe weight loss, disability, tube feedings, IV nutrition, medication with nasty side effects, and a life full of invasive medical treatments and hospitalizations. GP and CIP are not just simple illnesses which can be cured through diet changes, medication, or surgery. They do not mildly impact life. They have a profound influence on every daily activities, regardless of severity. There is no escape. Is this the kind of life a person wants to "just live with?"
There are also many situations in which living with GP and CIP are no longer an option. In severe cases, chronic malnutrition takes over and people are unable to survive the trauma on the body. The body often quits absorbing, organs shut down, and the liver may fail for those who have been on long term IV nutrition. Veins become inaccessible and there is no way for them to receive nutrition. Some who are fortunate enough to be aware of the option and be eligible may pursue a five organ transplant as a last resort to stay alive. While this can be miraculous and life saving, it doesn't come without its own complications for life. Individuals who reach this level of severity have become desperate. There are no options. They either risk their lives by going through a transplant, recognizing that even if they make it to the transplant and out of the OR, they face a lifetime of complications and possible organ rejection. But the only other option is starvation. There's not really a choice when you get to that point.
Living with GP and CIP is hard to describe. The best patients can do to help others understand is to tell people to consider what it would feel like to have the flu, every single day, and the impact that would have on your life. But then you have to throw in additional health problems and the stereotypes, comments, and claims by others that what they deal with is not real and not worthy of attention. Because they don't "look" sick, family and friends who don't believe put a wedge between them or completely leave, believing that the person is trying to use a mild condition to "benefit" from resources such as disability, have an excuse to get out of unwanted duties, a way to receive special parking "privileges," and other accommodations at work and school. They are often looked at oddly when forced to admit they are on disability because of a "stomach" problem, can't lift a box of sodas into their cars because they are too weak, get glared at because they park in an HP spot but get out of the car walking, and dealing with other colleagues and students who are jealous of the accommodations received to make life easier to live and adaptation into society easier.
GP and CIP need more attention. People don't understand what it is really like to fight these conditions and what daily life is like for those who suffer. They are downplayed as simply being conditions that can be controlled if "you would just eat correctly and avoid certain foods." While in some instances this is true, there is a very wide spectrum to the level that people die from these conditions as well. If not to the point of dying physically, many are unable to truly "live" at all as GP and CIP zaps the life out of them. Note how long it took you to recover from just a 24 hour flu. Then realize that in GP and CIP there is no recovery. There is no in between. It is a daily battle, with ups and downs, unknowns, and a life full of complexity and misunderstanding. Try to step into their shoes for a short time. Next time you have your head in the toilet, imagine life like that every day. Be thankful for what you have. Be thankful you will recover and life will return to normal. And remember those whose lives will never return to normal. Give back. Help them fight. Support them. Try to understand. Let them vent without judging them. Encourage them. They often lack self-confidence because they have either been judged so much or feel as if they are incapable of accomplishing important things because of being ill. Also, realize that you are dealing with some of the strongest, toughest, people you will ever meet. Thank you for taking the time to read this and step into the lives of those suffering from GP and CIP for a short time.
Frequent trips to the ER and hospital become routine...just a part of life. Social activities are non-existent because most of them involve food. If you do go out, you end up ordering water, maybe a soda, and pulling that pack of crackers out of your purse to nibble at. You feel fortunate that you are even capable of keeping that down, realizing that many people in similar situations can't. Making plans is a challenge. You may feel well and up for an outing, but then while out the symptoms attack and a planned fun-filled evening becomes a drag very quickly. That's what life with gastroparesis and intestinal pseudo-obstruction is like.
These conditions are so poorly understood. They are so hidden that people often don't believe they are real or are not as serious as they actually are. Although difficult to understand, patients suffering from GP and CIP may look completely healthy. They may drive, work, shop, go to church, take care of a family, and look great on the outside. Their color may be nice, they may look strong and energetic, and they may appear to be feeling well. Yet, the turmoil churning within them is by no means normal.
Remember the last time you had the flu. After 24 hours of nausea, vomiting, perhaps diarrhea, and aches and pains, you couldn't wait to get back to work and your normal activities. As you tried to return to your routine activities, however, you did notice you felt weaker than usual. It was more challenging to get things done because you had a day of surviving on toast, crackers, and soup...not exactly a champions dinner!
Now, take that day and multiply it by years. Add medication, medical procedures, hospitalizations, chronic malnutrition complications, invasive treatments, surgeries, and additional illnesses that develop over time. You are getting closer to understanding what life with GP and CIP is like, but you are still not there.
On top of the physical issues, because the conditions are so poorly understood, people with GP and CIP often have to live with the challenges of stereotyping by society. It is often believed that patients are exaggerating their conditions because they don't "look sick." Others believe those who suffer really just have an eating disorder and use a "mild" condition as an excuse for not eating well. People simply don't understand that a couple sips of soup can send one's gut into a frenzy and result in hours of nausea, abdominal pain, and vomiting. Sometimes this lasts even for days. One wrong bite of food can result in a bowel obstruction and trip to the hospital for an NG tube for suction or surgery to remove the blockage. There are no cold and flu treatments to help symptoms or treat the conditions at all. At best, patients can try some anti-nausea medications with nasty side effects, or drugs that are so expensive insurance companies only provide 12 a month...so they have to decide which 12 times a month they are sick enough to take it. On top of that, any drugs that may help are pulled from the market and no longer available. Once that is removed, even if restarted through compassionate clearance programs, they never quite work as well again. But the odds of getting on that program are slim to none. They feel like everything has been taken away from them...not only health, a normal life, food, and even friends and family who jump ship, but the only treatment that keeps them even somewhat functioning.
Think back again to the day you had the flu. You probably did not want to lift your head off the bed or couch. You felt too weak to make it to the bathroom. Every time you sat up, you felt your head spin and the nausea increased even more. Finally, it was a battle of determination to force yourself up and walk to distance to the bathroom. While you were up, you tried to grab as many items as you needed so you didn't have to get back up again for a long time. By the time you get back to bed, you were so weak and wiped out that all you wanted to do is sleep or watch TV. But you couldn't get your mind off the nausea. It was so overwhelming that you curled up into a ball on your side and just waited for it to pass. You took flu medication in hopes of sleeping it off and had hope that tomorrow would be better.
People with GP and CIP don't have that hope that tomorrow will be better right now. Each day varies and some are better than others, but inevitably the bad days will always come back. There are limited options to treat symptoms, but they don't work well. Patients are basically told to "live with it." In some cases, it can't be lived with. While most people with GP get by on what is available, because there are no other options, quality of life is certainly very poor. Many survive on less than 1,000 calories a day, severe weight loss, disability, tube feedings, IV nutrition, medication with nasty side effects, and a life full of invasive medical treatments and hospitalizations. GP and CIP are not just simple illnesses which can be cured through diet changes, medication, or surgery. They do not mildly impact life. They have a profound influence on every daily activities, regardless of severity. There is no escape. Is this the kind of life a person wants to "just live with?"
There are also many situations in which living with GP and CIP are no longer an option. In severe cases, chronic malnutrition takes over and people are unable to survive the trauma on the body. The body often quits absorbing, organs shut down, and the liver may fail for those who have been on long term IV nutrition. Veins become inaccessible and there is no way for them to receive nutrition. Some who are fortunate enough to be aware of the option and be eligible may pursue a five organ transplant as a last resort to stay alive. While this can be miraculous and life saving, it doesn't come without its own complications for life. Individuals who reach this level of severity have become desperate. There are no options. They either risk their lives by going through a transplant, recognizing that even if they make it to the transplant and out of the OR, they face a lifetime of complications and possible organ rejection. But the only other option is starvation. There's not really a choice when you get to that point.
Living with GP and CIP is hard to describe. The best patients can do to help others understand is to tell people to consider what it would feel like to have the flu, every single day, and the impact that would have on your life. But then you have to throw in additional health problems and the stereotypes, comments, and claims by others that what they deal with is not real and not worthy of attention. Because they don't "look" sick, family and friends who don't believe put a wedge between them or completely leave, believing that the person is trying to use a mild condition to "benefit" from resources such as disability, have an excuse to get out of unwanted duties, a way to receive special parking "privileges," and other accommodations at work and school. They are often looked at oddly when forced to admit they are on disability because of a "stomach" problem, can't lift a box of sodas into their cars because they are too weak, get glared at because they park in an HP spot but get out of the car walking, and dealing with other colleagues and students who are jealous of the accommodations received to make life easier to live and adaptation into society easier.
GP and CIP need more attention. People don't understand what it is really like to fight these conditions and what daily life is like for those who suffer. They are downplayed as simply being conditions that can be controlled if "you would just eat correctly and avoid certain foods." While in some instances this is true, there is a very wide spectrum to the level that people die from these conditions as well. If not to the point of dying physically, many are unable to truly "live" at all as GP and CIP zaps the life out of them. Note how long it took you to recover from just a 24 hour flu. Then realize that in GP and CIP there is no recovery. There is no in between. It is a daily battle, with ups and downs, unknowns, and a life full of complexity and misunderstanding. Try to step into their shoes for a short time. Next time you have your head in the toilet, imagine life like that every day. Be thankful for what you have. Be thankful you will recover and life will return to normal. And remember those whose lives will never return to normal. Give back. Help them fight. Support them. Try to understand. Let them vent without judging them. Encourage them. They often lack self-confidence because they have either been judged so much or feel as if they are incapable of accomplishing important things because of being ill. Also, realize that you are dealing with some of the strongest, toughest, people you will ever meet. Thank you for taking the time to read this and step into the lives of those suffering from GP and CIP for a short time.
Subscribe to:
Posts (Atom)