I wrote an entry about advice to those who have just been newly diagnosed with Gastroparesis but I wanted to make an entry of my top five things, I believe, you should do after being diagnosed. It contains a lot of good advice from a few members of a Gastroparesis group I was in as well. The links will be in all caps and in bold. Just click on them and they will take you to a different link.
1. You Have Named Your Illness - How to Help Family/Friends Understand
First, it's going to be hard for other people to adjust to the fact that you have an illness and it has a name. It's no longer invisible. People see you and it is NOT all in your head. However, having an invisible illness can be tricky because people often don't understand what they can't see. It can be difficult with all of the extra stress an invisible illness can put on you, so, I am going to recommend two of my blog entries that you should read and maybe read over with again with friends and family.
Please remember that people react differently to different situations. If people seem angry with you or tell you that it's all in your head, just give them some space. I had a friend who was very angry with me before I was diagnosed because I kept blowing off going to the movies, going out to eat, even going to the theatre! She was angry with me and called me flaky. She stopped calling me. After my illness and after reading my blog, I got a message from her on Facebook. She apologized to me! She said that she knew I was sick but not how sick. So, be patient. The important part is that you found out what's been making you sick and that's a very big step!
The first entry you can find by clicking HERE. is, "How to deal with People Who Say, 'But You Don't Look Sick.'" It's going to happen quite a lot, and you'll need to learn how to be patient with those people. This entry will help you and prep you for when that time comes. I know it's not easy to deal with, believe me, I've dealt with an awful lot, but it will help get you through the worst of it. I did not write this article, but I wanted to share it because it was helpful.
The second entry you can find by clicking HERE is, "How to Talk to Someone with a Chronic Illness; What You Should and Should Not Say." Keep this one to give to people as well. When people we care about are in pain, we want to offer words of encouragement, help ease their pain and motivate them to stay hopeful. Unfortunately, our words of cheer can often be misinterpreted by those who live with chronic illness. Rather than feeling supported, our words can evoke the feeling of "she doesn't understand my life at all." This can permanently affect our relationships. There are some tips in that entry to keep in mind when talking to a friend living with an invisible illness. I did not write this article, but I wanted to share it because it was helpful.
I'm going to add one more entry that will help you as well. It's called, "Advice for Caregivers and Loved Ones Who Witness Loved Ones Suffering with Gastroparesis." You can read it by clicking HERE.
2. Look Up Resources For Support
It's really hard to get the diagnosis from the doctor telling you that you are chronically ill. When I was diagnosed with Gastroparesis in March of last year, I had never heard the word "gastroparesis" before then. After I got home from the hospital, I went online to see what I found find out about my new illness and find a support network. When you're told so many times that you make up your illness or that you look great when you haven't eaten in a week and barely have enough energy to take a shower, it hurts. It hurts emotionally and physically. You can talk to a friend, partner, husband, wife, or neighbor. It does help to talk and get those feelings out.
I've found what really helps the most is to talk to people with the same illness that you have. You don't have to explain yourself when you break down and vent, or if you burst out into tears because of a song on the radio. You don't have to hold anything back when you tell them how sick you got after eating something you shouldn't have. They don't push, probe, or anything like that. Most of all, they DO NOT judge! I have compiled a list of great online support groups and resources, and I update the list when I find new groups. The list contains Facebook pages, websites, blogs, and mailing lists. It's important to have resources to not only research GP, but to find people like you to talk to. You can find the list by clicking HERE. This ties in with my next point, you need to be your own advocate.
3. Be Your Own Advocate
Research your illness. Sadly, doctors don't know everything. You should research your diagnosis. However, with all things on the Internet, make sure you're researching reliable sources. It's important for you to stay on top of all of the latest news about GP/DTP because most doctors aren't very familiar with GP or how to treat it. I usually go into the doctor armed with knowledge he doesn't have. Most people with GP, I've found, know more about GP than the doctor. I was asked today, actually, by the nurse at an urgent care clinic near my house what Gastroparesis was. I explained it to her and she looked a bit bewildered. But hey, I'll be happy to spread awareness any way I can. If you find a doctor you know, like, and trust, keep them!
Ask Questions about your illness! I can't stress this enough. After you do your own research, compose a list of questions that you have for the doctor and bring them in with you. If you write down what you need to ask, you won't forget. I've given my doctor a list of questions that I've written down before. He addressed them all. If you have any further questions after seeing him, write them down and call his office to leave them with the nurses. Your doctor will get to answer them when he has time.
Make sure the medications are helping you, not harming you. When I went to the Mayo Clinic, I was on about twelve different medications. The doctor stripped me off of almost all of them. Two of the medications actually did the same thing as well as could paralyze my stomach! The other medications had side effects that were just awful. You can find out more about Reglan by clicking HERE has irreversible neurological side effects! I was never told stuff like this! Be sure to check with your pharmacist and your doctor to make sure the medication you have is right for you.
4. The Gastroparesis Diet Plan
You want to make sure that you lower your risks of getting a GP attack. I wrote an article containing the diet plan from Mayo that I received from there, plus it links to Pinterest Boards with GP friendly recipes - like smoothies, juicing, and friendly food. Be careful though, everyone is different. What works for someone may not work for you. It's trial and error. It can be found by clicking HERE.
The diet is important because it will also help you determine what you can eat and what you can't eat. Again, no two GPers are the same. I can tolerate Yogurt on good days and most people with GP can't tolerate dairy. My advice is to keep a food journal. Log what you eat, what time you eat, and how much you ate. Also, record any GP attacks you have and the time they start and end. This will help you identify patterns and triggers in your diet. It's helpful and it cuts back on testing at the doctor's office.
5. Don't Give Up!
This is by far the MOST important point! You are NEVER alone so don't give up! Find someone to talk with, to help you through those rough times when you need it most. I have had some really rough days when I wondered what kind of life I was going to lead with this illness. What kind of life can you have if you vomit six to eight times a day? But, it IS a life. My life. I'm lucky to have it, so I plan on fighting for it. I'm excited to pass off a pair of boxing gloves to you so that you can fight along side me, fellow GP Warrior. <3
For more advice from our Gastroparesis Facebook Members on how to cope with being diagnosed with GP, please click HERE.
Showing posts with label don't give up. Show all posts
Showing posts with label don't give up. Show all posts
Friday, April 26, 2013
Sunday, April 7, 2013
Advice for the Newly Diagnosed with GP/DTP
Today, I posted this question to one of the groups I used to be in, "if you could give any advice to the newly diagnosed with GP/DTP, what would it be?" I received some amazing responses, so I thought I would share them in this article. I've tried to cite people as best as I can without giving away personal information. Please note that letters in all caps and bold are links.
I know that when I was finally diagnosed in March of last year, I did two things that really helped me.
The first thing I did was start this blog. I started it to keep track of my medical information, visits, testing, and everything else that I wouldn't remember later. My main goal was to help people through my own experiences so that maybe they wouldn't repeat things that I have done in the past like listening to bad advice from doctors. I was put on two medications that actually did the same things AND they slowed down motility! I also know that through my research, there's not really a whole lot on the internet about Gastroparesis or support groups. So, I made THIS entry to put all of my research in one place for people who may need support groups. My article with online resources has since been used by United Healthcare as an electronic resource for GP/DTP.
The second thing I did was purchase a journal. I carry my journal around with me everywhere! I do daily entries to log what I eat, when I eat, what time, when gastric spasms start, if I go to the bathroom, when I get sick, how much I got sick, and how I feel. You can give this journal to your doctor for them to read to help them understand what you're going through. If your stomach is like mine, it betrays you when you get to the doctor so that the doctor thinks it's fine. It will also help you distinguish patterns in what you eat and what makes you sick. It might cut down on the amount of testing needed at the doctor's office as well. I've got a TARDIS journal that I write in because I'm a huge Doctor Who fan. A picture of my journal is below.
Also, here is a picture of me during Christmas 2011, before I became ill. The picture below it is the one I took today.
In addition to my own personal advice, I would like to add some more from the wonderful GP Facebook Page that I own/admin. Here is a list compiled from that page.
1. Emily's Stomach. http://www.facebook.com/emilysstomach I have admins who will help you keep motivated and to help to answer any questions you may have. You can PM the page and we will answer your question to the best of our ability. I would also suggest joining a support group. I have a lot of good ones listed in a different article.
2. Be your own advocate (Kirsten). I can't stress this enough! Being your own advocate and do research on the newest treatments for GP. Look up the medication you're prescribed and see if the doctor missed potential side effects like slow motility, nausea, and vomiting. Like I said previously, my GI doctor put me on two medications that did the exact same thing and they slowed my motility WAY down. HERE is a list of medications that make GP worse. **Please consult your doctor and pharmacist about medications as I'm just giving advice, I am not practicing medicine. I'm trying to guide but not take the place of the professionals. Always check with them FIRST.**
3. Believe in yourself (Melissa)! You are your own cheerleader and you CAN do this! I know the road may seem rough sometimes but believe in yourself like we believe in you.
4. Research your condition (Diana)! Sadly, doctors don't know everything. You should research your diagnosis. However, with all things on the Internet, make sure you're researching reliable sources (Melissa). It's important for you to stay on top of all of the latest news about GP/DTP because most doctors aren't very familiar with GP or how to treat it. I usually go into the doctor armed with knowledge he doesn't have. Most people with GP, I've found, know more about GP than the doctor.
5. Ask Questions (Melissa)! I can't stress this enough. After you do your own research, compose a list of questions that you have for the doctor and bring them in with you. If you write down what you need to ask, you won't forget. I've given my doctor a list of questions that I've written down before. He addressed them all. Ask about other treatment options for GP like Botox, the Gastric Pacemaker, and Domperidone.
6. GI doctors at the MN Mayo Clinic recommend marijuana, where it's legal, to help with GP (Melony). Be careful though, because even though marijuana might help you eat, it can also slow motility.
7. It's NOT all in your head! I *hate* it when people say this and I was told this nonstop for the past few years. I've lost friends because I kept cancelling on them. They thought I was just being flaky or that I was being anti-social. They also told me, "well, you're ALWAYS sick." Don't let this defeat you. You can help your friends understand by using THE SPOON THEORY. I've used this for a few of my friends and it's helped. I actually had some of them come back and apologize to me. Please read it, it's a great article. They also have a page on Facebook.
8. Don't give up (Tracy)! We all have rough patches that knock us down. However, get right back up and keep fighting! Lean on others for support.
9. You are NEVER alone! Find someone that you can talk and join a support group. My suggestion would be the Stronger Than GP Support Group (http://www.facebook.com/groups/strongerthanGP/) Feel free to add me as a friend. We, the admins and myself, get what you're going through. We're here to help.
10. Be patient (Judy)! While there is no cure for GP/DTP, we have good days and bad days. Sometimes, the bad outweighs the good, but it will pass. If you are having GP attacks, be patient and try some deep breathing exercises. The one that was suggested to me at Mayo is called Diaphragmatic Breathing and an instruction video can be found HERE.
11. Stay hydrated (Judy)! If you let yourself get dehydrated, that opens a whole new can of worms. You'll have terrible headaches, dizziness, fatigue, and maybe worse. Even if you are vomiting, try to suck on ice chips or if you can tolerate it, sip on Pedialyte. Stay away from Gatorade, speaking from personal experience. It's full of sugar that won't sit well on your stomach and then you'll have very interesting colored vomiting. If you don't stay hydrated, you'll end up on an IV in the ER, and that's miserable. Don't torture yourself.
12. Try and take liquid or melt away vitamins (Judy). I am currently dealing wtih a vitamin deficiency because my body is malnourished due to starvation. This just digs you into a hole and once you're there, it's hard to climb back out of it. Try Flinstone's chewables, vitamelts, or liquid vitamins. Stay away from things like gummy vitamins because they'll just sit in your stomach, undigested. I have recipes that are GP friendly, including juicing recipes at PINTEREST.
13. Lean on family (Julie). I know some people have families who aren't supportive because they think that the illness is in your head, still. Don't give up on trying to help them understand. Use the Spoon Theory (mentioned above). This is one of those situations where you will find out who your true friends are. If you lose friends like I did, then they weren't really your friends to begin with and now you have room to make new ones.
14. Praying/religious support (Lyndsay). If you are religious then prayer, faith, and emotional support from church members will help you through this. You can also seek emotional guidance from a priest to help you on your journey.
15. Keep yourself happy (Monica)! This is really important for your well being. If you need ways to cope with GP or distractions from the pain, please check out a previous entry I wrote by clicking HERE. It contains lots of ideas that you can use for inspiration. I like to write, distract myself with my favorite TV shows, and listen to music.
16. Keep looking until you find the right doctor (Nikki). Nikki writes, "don't forget that they work for you!" She's right. Keep searching until you find the doctor who is right for you. Find someone you can trust that will listen to you. I've gone through about ten GI doctors and I'm still having issues finding one that I can trust to listen to me. Don't get discouraged. The right doctors are out there.
17. Take advantage of the good days (Jessica). Good days with GP can be few and far between. So, take every minute of a good day and enjoy it! I've had one or two good days recently, so I milked it for all it was worth!
18. Snap out of Denial. We all go through it. I've eaten foods that I shouldn't have a few times because I really did believe when I was first diagnosed that it was all in my head. After I ate, however, the gastric spasms hit with a vengeance! LaShelle has written out the GP diet that was given to her at Mayo. You can ask her for it.
15. Dealing with Hypoglycemia. I use Shok Blocks because they work quickly and they don't taste that badly. The link to the Shok Blocks on Amazon is HERE.
I hope this article will make your transition to living with GP a little easier. If I may have missed something, please comment below and I will update my entry accordingly. Just remember that it's not in your head. I'm going to conclude with this passage from an unknown author:
I know that when I was finally diagnosed in March of last year, I did two things that really helped me.
The first thing I did was start this blog. I started it to keep track of my medical information, visits, testing, and everything else that I wouldn't remember later. My main goal was to help people through my own experiences so that maybe they wouldn't repeat things that I have done in the past like listening to bad advice from doctors. I was put on two medications that actually did the same things AND they slowed down motility! I also know that through my research, there's not really a whole lot on the internet about Gastroparesis or support groups. So, I made THIS entry to put all of my research in one place for people who may need support groups. My article with online resources has since been used by United Healthcare as an electronic resource for GP/DTP.
The second thing I did was purchase a journal. I carry my journal around with me everywhere! I do daily entries to log what I eat, when I eat, what time, when gastric spasms start, if I go to the bathroom, when I get sick, how much I got sick, and how I feel. You can give this journal to your doctor for them to read to help them understand what you're going through. If your stomach is like mine, it betrays you when you get to the doctor so that the doctor thinks it's fine. It will also help you distinguish patterns in what you eat and what makes you sick. It might cut down on the amount of testing needed at the doctor's office as well. I've got a TARDIS journal that I write in because I'm a huge Doctor Who fan. A picture of my journal is below.
Also, here is a picture of me during Christmas 2011, before I became ill. The picture below it is the one I took today.
In addition to my own personal advice, I would like to add some more from the wonderful GP Facebook Page that I own/admin. Here is a list compiled from that page.
1. Emily's Stomach. http://www.facebook.com/emilysstomach I have admins who will help you keep motivated and to help to answer any questions you may have. You can PM the page and we will answer your question to the best of our ability. I would also suggest joining a support group. I have a lot of good ones listed in a different article.
2. Be your own advocate (Kirsten). I can't stress this enough! Being your own advocate and do research on the newest treatments for GP. Look up the medication you're prescribed and see if the doctor missed potential side effects like slow motility, nausea, and vomiting. Like I said previously, my GI doctor put me on two medications that did the exact same thing and they slowed my motility WAY down. HERE is a list of medications that make GP worse. **Please consult your doctor and pharmacist about medications as I'm just giving advice, I am not practicing medicine. I'm trying to guide but not take the place of the professionals. Always check with them FIRST.**
3. Believe in yourself (Melissa)! You are your own cheerleader and you CAN do this! I know the road may seem rough sometimes but believe in yourself like we believe in you.
4. Research your condition (Diana)! Sadly, doctors don't know everything. You should research your diagnosis. However, with all things on the Internet, make sure you're researching reliable sources (Melissa). It's important for you to stay on top of all of the latest news about GP/DTP because most doctors aren't very familiar with GP or how to treat it. I usually go into the doctor armed with knowledge he doesn't have. Most people with GP, I've found, know more about GP than the doctor.
5. Ask Questions (Melissa)! I can't stress this enough. After you do your own research, compose a list of questions that you have for the doctor and bring them in with you. If you write down what you need to ask, you won't forget. I've given my doctor a list of questions that I've written down before. He addressed them all. Ask about other treatment options for GP like Botox, the Gastric Pacemaker, and Domperidone.
6. GI doctors at the MN Mayo Clinic recommend marijuana, where it's legal, to help with GP (Melony). Be careful though, because even though marijuana might help you eat, it can also slow motility.
7. It's NOT all in your head! I *hate* it when people say this and I was told this nonstop for the past few years. I've lost friends because I kept cancelling on them. They thought I was just being flaky or that I was being anti-social. They also told me, "well, you're ALWAYS sick." Don't let this defeat you. You can help your friends understand by using THE SPOON THEORY. I've used this for a few of my friends and it's helped. I actually had some of them come back and apologize to me. Please read it, it's a great article. They also have a page on Facebook.
8. Don't give up (Tracy)! We all have rough patches that knock us down. However, get right back up and keep fighting! Lean on others for support.
9. You are NEVER alone! Find someone that you can talk and join a support group. My suggestion would be the Stronger Than GP Support Group (http://www.facebook.com/groups/strongerthanGP/) Feel free to add me as a friend. We, the admins and myself, get what you're going through. We're here to help.
10. Be patient (Judy)! While there is no cure for GP/DTP, we have good days and bad days. Sometimes, the bad outweighs the good, but it will pass. If you are having GP attacks, be patient and try some deep breathing exercises. The one that was suggested to me at Mayo is called Diaphragmatic Breathing and an instruction video can be found HERE.
11. Stay hydrated (Judy)! If you let yourself get dehydrated, that opens a whole new can of worms. You'll have terrible headaches, dizziness, fatigue, and maybe worse. Even if you are vomiting, try to suck on ice chips or if you can tolerate it, sip on Pedialyte. Stay away from Gatorade, speaking from personal experience. It's full of sugar that won't sit well on your stomach and then you'll have very interesting colored vomiting. If you don't stay hydrated, you'll end up on an IV in the ER, and that's miserable. Don't torture yourself.
12. Try and take liquid or melt away vitamins (Judy). I am currently dealing wtih a vitamin deficiency because my body is malnourished due to starvation. This just digs you into a hole and once you're there, it's hard to climb back out of it. Try Flinstone's chewables, vitamelts, or liquid vitamins. Stay away from things like gummy vitamins because they'll just sit in your stomach, undigested. I have recipes that are GP friendly, including juicing recipes at PINTEREST.
13. Lean on family (Julie). I know some people have families who aren't supportive because they think that the illness is in your head, still. Don't give up on trying to help them understand. Use the Spoon Theory (mentioned above). This is one of those situations where you will find out who your true friends are. If you lose friends like I did, then they weren't really your friends to begin with and now you have room to make new ones.
14. Praying/religious support (Lyndsay). If you are religious then prayer, faith, and emotional support from church members will help you through this. You can also seek emotional guidance from a priest to help you on your journey.
15. Keep yourself happy (Monica)! This is really important for your well being. If you need ways to cope with GP or distractions from the pain, please check out a previous entry I wrote by clicking HERE. It contains lots of ideas that you can use for inspiration. I like to write, distract myself with my favorite TV shows, and listen to music.
16. Keep looking until you find the right doctor (Nikki). Nikki writes, "don't forget that they work for you!" She's right. Keep searching until you find the doctor who is right for you. Find someone you can trust that will listen to you. I've gone through about ten GI doctors and I'm still having issues finding one that I can trust to listen to me. Don't get discouraged. The right doctors are out there.
17. Take advantage of the good days (Jessica). Good days with GP can be few and far between. So, take every minute of a good day and enjoy it! I've had one or two good days recently, so I milked it for all it was worth!
18. Snap out of Denial. We all go through it. I've eaten foods that I shouldn't have a few times because I really did believe when I was first diagnosed that it was all in my head. After I ate, however, the gastric spasms hit with a vengeance! LaShelle has written out the GP diet that was given to her at Mayo. You can ask her for it.
15. Dealing with Hypoglycemia. I use Shok Blocks because they work quickly and they don't taste that badly. The link to the Shok Blocks on Amazon is HERE.
I hope this article will make your transition to living with GP a little easier. If I may have missed something, please comment below and I will update my entry accordingly. Just remember that it's not in your head. I'm going to conclude with this passage from an unknown author:
I wish you enough sun to keep your attitude bright.
I wish you enough rain to appreciate the sun more.
I wish you enough happiness to keep your spirit alive.
I wish you enough pain so that the smallest joys in life appear much bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish you enough hellos to get you through the final good-bye.
-Author Unknown
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