Gastroparesis and Chronic Intestinal Pseudo-Obstructoon are two conditions which paralyze the GI tract. Digestive Tract Paralysis (DTP) affects approximately 5 million Americans, yet you have probably never heard of it unless you or a loved one has been diagnosed with it. More information is available on the G-PACT website at www.g-pact.org and on their facebook fan page at www.facebook.com/G-PACT.
I was diagnosed with gastroparesis in 1994 and intestinal pseudo-obstruction in 2002.
I would like for people to know that living with DTP is like: Remember the last time you had the stomach flu? It's like that, only 24/7/365 and added with a lot of pain too. It never goes away. Remember how weak you were after the flu? You had a chance to recover after a few days and get your strength back. I don't have those days...ever...so I just get weaker and weaker and weaker and continue to have nausea, vomiting, pain, malnutrition, dehydration, bloating, early satiety, and weight loss.
DTP has changed my life by: It has changed me in good and bad ways. It has disrupted so much of my life by not allowing me to eat and live "normally", have a job, have a normal social life, get my graduate degree, and often leaves me in bed unable to get up. I have spent so much of the last 17 years in the hospital and have developed so many complications as a result. It forced me to have a five organ transplant and has almost taken my life on so many occasions. However, it has also given me new meaning and purpose in life. I have been able to help a lot of people through it by founding G-PACT and it's been exciting to see how far we can go when a group of people come together for one cause. I love that I have been able to give back to this community of people and I wouldn't have had that opportunity if I never developed it myself. It has helped me appreciate life so much more and given me compassion that I never had before I got sick. It has drawn me closer to God and I have to rely on Him so much to help me deal with all the ups and downs I deal with on a daily basis. It's both the worst and the best thing that could have happened to me. While I long every single day to be free of my problems, I don't discount what these problems have done to make me who I am. I often wonder what I'd be doing if I never got sick. I have no idea, but in some ways it scares me to think about it. I think I'm a better person overall as a result of it.
The hardest thing about living with DTP is: The limited social life, the lack of understanding, the constant ups and downs, the unknowns, and the unpredictability of it. I don't know from one minute to the next how I am going to feel. It makes it hard to plan anything at all. I can feel ok, then suddenly feel rotten and not be able to do anything at all.
Also, dealing with chronic nausea, malnutrition, and pain is not easy, but worse than that is when people don't understand and make assumptions without being in my situation. I'd rather deal with the physical pain than the emotional pain brought on by others who don't understand.
I wish people would understand that: GP and CIP are real conditions without a cure. They are NOT mild and NOT controllable by diet alone most of the time. In fact, one of the top GP docs in the country has said that he has given up on diet for GP...there isn't one. What I eat one day may go down ok and make me really, really sick the next. Also, GP and CIP are considered "invisible illnesses." That means that I may be really, really sick but still look really good. I may also look really, really sick, but acually feel pretty good. I also hide a lot...I'm not always really honest about how I feel because I don't like to sound like I'm complaining if it's a bad day. You may have to pressure me a bit and ask more direct questions to get a response, but I am open and really don't mind talking about it. In fact, sometimes I really need to, but don't know who REALLY wants to hear about it.
Sometimes I feel like: I am not as important in the world as other people because I am sick so much and not predictable and not always reliable. Sometimes I feel like I am a burden on society because I don't work and have to get all my money from disability and Medicare and Medicaid have had to pay so much, even $1,000,000 just for my transplant, and I'm not able to contribute anything back. I also feel like I am a burden on my family and like they have had to give up too much because I am sick. Sometimes this keeps me from being as open with them as I should be because I am trying to "protect" them.
I also feel bad when my meds interfere with my emotions and I become someone I am not in reality. Sometimes changes in my steroids, prograf, and other meds make me get really angry, depressed, and turn me into someone nasty that I'm not and I get really sensitive about everything and take things too personally. I tend to say and do things I don't mean and I always look back and feel bad later. I want people to understand that it's not me talking sometimes, it really is the drugs, and to be patient with me and know I will eventually stabilize and be back to my usual happy, quirky, and funny self with a love for life.
Everyday I deal with: nausea, pain all over, stiff, painful joints, bones, and muscles dizziness, weakness, severe, debilitating fatigue, fear, PTSD as a result of post-transplant complications (well, not daily, but sometimes), and emotional ups and downs
The treatment options I have tried are: feeding tubes, IV nutrition, meds (reacted to all of them but phenergan), temporary gastric pacer in 1996 (way early studies), botox injections into pyloric sphincter, and finally five organ transplant (small bowel, stomach, pancreas, liver, duodenum)
Other conditions I have been diagnosed with include: neuropathy, osteoporosis, long QT, dumping syndrome, Factor V leiden, migraines, heart murmur, mitral valve prolapse, fibromyalgia, possible POTS, probable Raynauds or another auto-immune condition, probable arthritis, (larygopharygeal reflux disease....swallowing disorder), some kidney problem that makes me lose potassium, and I don't remember what else...I've lost track, plus they keep throwing things out at me...
DTP has affected my social life by: keeping me from eating. Everyone eats when they get together. It's hard to go out to dinner and sit there. Also, I am so tired that I can't keep up with my friends or stay out for long periods of time or do very active things. I get home exhausted and can't do anything again for a few days. Planning things always comes with an "it depends how I feel that day" attached to it. I can't ever make solid plans.
The foods I can eat are: nothing, really....they all make me sick now and I have NO appetite, but when I do get the munchies I get by best on animal crackers, sugar free jell-o, pretzels, some soups, fat free cottage cheese, some pasta, SF pudding, SF candy, and string cheese. I'm a grazer and "pick" all day.
The foods I miss the most are: lasagna, pizza, tacos, cheeseburgers, french fries, steaks, cheese quesadilla's, nachos, cheese anything...
The activities I used to do and can't anymore are: basketball, soccer, softball, even drawing and painting is hard for me now, reading is hard sometimes because of concentration levels, track, hobby driving
The activity I miss the most is: physically: basketball, mentally (and physically too...takes energy) my artwork/illustrating and landscape painting
Even though life with DTP is tough, I have accomplished or learned that: I am stronger than I ever thought I could be! I have still made a decent life for myself and done a lot in spite of being so sick!
When I get down I: pray, look for something to do outside the house if I am up for it...anything! If I'm not up for going out, I contact a friend via text, phone, or FB, bug/tease people on FB, write out my feelings A LOT, or play a video game, watch a movie, or try to take a nap because sometimes fatigue in itself is the cause of me being down. Sometimes I work on G-PACT, but sometimes G-PACT is WHY I get down!
When I am having a bad day I: sleep it off and just watch TV. Sometimes I vent it all on FB (sorry...). I may text people and vent too (again...sorry...)
The gadget, item, "toy" I couldn't live without is: any of my techy stuff, but especially my iPhone. Next would be my computer and my Jeep :)
If my health were normal for one day I would: eat everything I have been craving for 17 years, then go out and play a hard game of no rules basketball...which can look more like football when I really get into it...:) Oh, and white water rafting...I'd definitely go white water rafting. Maybe I'll eat AFTER white water rafting!!! :)
A quote (motto, scripture, inspiration) that gets me through the tough days is: "I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing." - Agatha Christie
When I am having a good day I: go out and do what I can;t on the bad days. I LOVE to volunteer at my church and drive the Jeep for kicks (but it's an expensive hobby...:(
People would be surprised to know that: I was TN state spelling champion in 7th grade :) I won on the word "cacography" which ironically means "the possession of poor spelling skills"
Something interesting about me is: I think the best TV shows are from the 50's-80's. I also share a birthday with ALF. :) October 28 (28th of Nathinganger on Melmacian calendar)
One comment that people make to me that is really tough is: "I wish I could have what you have so I could lose some weight!!!!"
But I love it when people say: "How are you?" and really want to know...
My favorite thing that people do for me when I am not feeling well is: leave me alone if I'm in bed, or send me a random text to check up on me. If I'm not home, just hang with me until I feel better and can get home to my bed safely. If in the hospital, I like it when people visit me :)
The biggest surprise I have had about what dealing a chronic illness is like is: the discrimination...wow...and the assumptions/accusations made by people not in my shoes about what it should be like and how I should deal with it!!!!
I was involved in Digestive Tract Paralysis Week because: Awareness is so crucial to getting a cure...plus, I'm kinda the G-PACT president and started the whole crazy week! :)
I wish more people would read this and help increase awareness because: we need to be understood...and we need a cure!
The fact that you took time out of your busy schedule to read this makes me feel: appreciated, loved, and like you really do care and want to know how you can be the best support for me through it all
I'd also like to say: I love all my friends and family. Sometimes I am blunt and very honest about some of the nastiness of this and my frustrations, but I just need for people to know things sometimes. Plus, getting it out helps me cope. I don't feel sorry for myself, I don't want anything out of it, and I'd give anything to be "normal," but sometimes I have to express myself openly and honestly and it may sound like I'm complaining or pitying myself. I'm really not. I just get frustrated. This does NOT rule my life!
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