I need some advice from people who have 'been there.' My best friend lives in St. Louis, about 7 hours from my home in Des Moines! She is throwing a 'girls weekend' at her family's lakehouse & is begging me to come. I am DYING to get out of the house & out of Des Moines for a bit and would love some laughter & time with my friends, not thinking about my stupid stomach. I asked my Doctor & he said he would leave the decision up to me if I went & my family said the same thing. Which is nice, they are not pushing me one way or the other. HOWEVER, as much as I WANT to go, I'm a bit nervous.
I haven't been away from my 'safe people' aka my doctors, Grandma, & Aunt since I had major surgery last year. I still have lots of stomach issues, so I'm a bit nervous. I think it would be good for me, but don't know if this is a great idea yet since I'm dealing with so many issues. Anyone have any advice? I could pack babyfood and such along so that I don't have to worry about food & I'm used to vomitting, but there is something different about doing it without knowing your doctor is a 10 minute drive away if needed. Am I just being too cautious & nervous?
I need honest opinions! I do, however, think it'd be a boost for my emotional health!
Hmmm...what to do??
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Advice?
- By JeniMac
- Posted June 29, 2009 at 4:38 pm · 25 replies
- Shared with the public
Explore topics in this journal entry and replies:
Cancer Appendicitis Surgery GERD Gastroparesis Vicodin Breast cancer Morphine Gastric pacemaker Ostomy Pain Pacemaker Mental health Stress
25 replies
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- By JoAllison
- Posted June 29, 2009 at 8:19 pm
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I try very hard not to let my health problems curtail living my life, so I would suggest going, if you think you can. Bring your babyfood & whatever else you take. Write up a medical history & a list of meds & your doctor's name & contact information, just in case you have to end up in an emergency room -- odds are you won't in only a weekend, but if you do the info will make it much easier for the docs there to treat you (& they can call & talk to your doc), and it will make you feel safer which will increase the likelihood you won't need it (stress exacerbates things so you do what you need to to be calmer).
Do your friends know the extent of your condition? If not, you might want to consider telling them to some level so they won't be (so) shocked to actually see it. But also remind them that you're a person not a set of symptoms & you just want/need girlfriend time.
The first time is always the scariest. You wouldn't be normal if you weren't scared. But as long as your doctor isn't saying "no", it sounds like you can figure ways to handle it & go have fun. If you let fear constrain you too much, eventually you'll never leave the house. Not everything will go perfectly, but it will likely work out & you'll learn what to do better next time. And the fact that it did work will lift your spirits & give you confidence.
Let us know when you're going & I'll pray for you that weekend for sure!
Jo
- By JeniMac
- Posted June 30, 2009 at 12:33 am
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~Jo~
Thank you for the encouragement. You are right. Writing all the information out & having it on hand would give me a piece of mind. This is new territory for me. I was in college & drove 15 hours straight alone, have traveled abroad, & did research in the jungle. Now...I'm afraid to drive 7 hours! It makes me incredibly mad at myself! I need to take that step--you are right. The doc said "I will never tell you to stop living your life because then you won't fight to live it."
If I go, which I am leaning towards going, I will leave on the 9th of July! I will let you know for sure.
Have you ever experienced the fear of going somewhere?
Yes, she is my best friend. She knows all about it. When I was in the hospital for a month she came up and 'slumber partied' with me in the hospital. She was the one who insisted, no matter the pain, I walk straight and not slouch & has made many visits to see me. SO...yes, she knows & she is wonderful. But I am constantly worried about being an inconvienence to those I'm around, you know?
What if I pack some of my own foods & my travel blender. That isn't rude to her family is it??
Oh Jo, thank you so much for this reply. It really made me feel not so nuts or whimpy! I'm usually very adventurous. I guess little steps can be adventures too, right??
You are in my prayers,
Jen
- By JoAllison
- Posted June 30, 2009 at 1:57 am
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No it is not rude to her family to bring your own food & a blender, it's practical. I just presented all of my friends with a listing of the foods I can & can't eat - because at a party this past Saturday the hostess had nothing I could eat (she came up with yogurt - it worked). It's partly my fault, because in the past she's usually had one thing I could eat, so I assumed it would be so this time & didn't bring anything. Also, other times in the past, when I was on liquids I'd just bring my own smoothie with me. I told my friends that I'm not asking them to cook around my diet (though one item would be nice) but just to let me know ahead of time if I can't eat anything on the menu so I can bring something.
Of course little steps can be adventures. After I went back to work after major abdominal surgery, it was an adventure just to try to make it in from the parking lot.
Yeah, I've been afraid to go somewhere. My partner/BF lives in South Carolina. I live in upstate NY. We travel back & forth every 6 - 8 weeks to see each other for a long weekend. Flying. When you can't eat wright & are subject to intense pain when things get screwed up (I ended up in the emergency room down there with a pancreatitis attack after a romantic weekend in Savannah & had to delay the trip home, scared the living daylights out of my partner), it can be scary. Heck, at that point, its scary to try ANYTHING new (or new post-screwed-up-GI-track). But I don't want to give up on life.
Right now, I've got something coming up that I can't wait to get here, but am really quite nervous about at the same time. My parents, to celebrate their 50th wedding anniversary, are taking the whole family on a just over a week long trip to South Africa. I so want to go. Iam going. I'll never get another chance. But I'm scared about the trip throwing off my stomach, about eating (even I made a list of everything I can & can't eat -- in a good period --and gave it to the tour company who say they've given it to the chefs at the places we'll be eating), about spoiling the others trip if I end up in pain there [my main GP symptoms are pain, bloating, and GERD - I don't get the throwing up, thank the Lord] . I'm not really worried about ending up in pain afterwards - I figure its probably a given - but a trip to Africa will be worth it & I'll go back on liquids & wait it out even if its months. I want to see elephants & giraffes & lions & zebras & hippos & penguins & all sorts of wierd colorful birds!! I leave in 2.5 weeks.
Jo
- By margamouse
- Posted June 30, 2009 at 9:09 am
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I say if you can physically handle the trip, GO FOR IT!! I can't drive right now so I envy you that. Yes, it can be scary. I get nervous about going somewhere different, too.
We went to the mall for the first time since I've been sick. Luckily I had a jazzy to ride or I'd never had made it. But on the way to the mall, I was nervous and worried about having to find a bathroom in a hurry, what if the pain hit harder while I was there, how would I handle it...Needless to say, it all worked out fine. The pain didn't increase until we were on our way home and I ended up hitting the recliner and vicodin the rest of the day but I had a good time getting out and doing something different.
Sometimes my husband will make me go somewhere, even if it's just for a ride. I worry before and on the way but eventually I end up enjoying myself and the time away from the house.
By all means take the food you need. Your hostess might even appreciate it as she won't have to work around your special diet so much.
Hope it's a great trip and let us know how you make out.
Margaret
- By NancyL
- Posted June 30, 2009 at 9:23 am
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Hi Jeni,
Go! I believe that you need this fun weekend. My advice would be to take as much of the stuff that you know you can eat with you. And be careful about deciding to just eat what the others are having "just this one time". I have ruined (for myself)so many otherwise fun times with friends and family deciding to just join the fun and eat along with them. Foods that I knew were off limits normally. That is the hardest thing for me. If there are alot of people around it is easier for me to go off on my own at mealtime. And join them after the main eating is over. If there is only one or two people I tend to stick around and am more likely to cheat. It helps if I drink a slimfast before we go out. then I will just order something to drink and perhaps have a bite of something that the others are having. I am happy for you that you have such a good friend to stand by you.
Nancy
- By charliegirl3
- Posted June 30, 2009 at 12:03 pm
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Jen,
I would go. I missed so many things because of the same reason. I finally got the courage and strength to book a trip to Ireland with my family. I was in the hospital one month and it was 8 a days before we suppose to go and I got our. I told my family I was going no matter what. I met with my Dr before and he gave me a talk about what to do and what not. He was worried about me traveling aboard but I wanted to go. Well I went I packed special things for me to eat and all the medications that could prevent anything. I watched what I ate and was very careful about that so I did not have any problems. I also let my family know that when I said we need to find a bathroom or something to eat or drink that they knew that I needed it. Just let your friends know what to expect and it will all go smooth. Take a list of meds and things you take and Drs. numbers.,insurance cards. You will be fine. I don't know if you are driving or flying but the airlines where very good about the meals they served me. I just watched it carefully. You can't put your life on hold or you will be stuck in your house forever. Best wishes and God Bless.
- By MarieTwinTubes
- Posted June 30, 2009 at 12:04 pm
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JeniMac, You go girl!!
The trip will free you from the fear of going. Last December I flew for the first time in 10 years. Now my moto is "Have tubes, will travel!" Seriously, I hope yu go, it will be ahuge boost for your mental health. Your condition is much more complicated than mine, but I have always found that friends and family are accommidating and very understanding. I pull my tube out and eat wherever I am.
It's a good idea to get a medical necessity travel letter from you doctor. I have even learned to get through airport security with botlted water. I never let go of my supplies until I have talked to someone and explained the medical necessity.
I just got back from a trip to TX to see my son and family... precious grandchildren! I traveled with my ventilator in my lap and my feeding tube supplies in hand.
Oley has some travel tips on their web site.
You will feel exhilerated and amazed at how caring yoiur friends will be. You are not an inconvenience, but rather a valued friend!
Blessings! Have a ball!!
Marie
- By Einstein
- Posted June 30, 2009 at 1:11 pm
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I would definitaly go! I understand the fear of something happening. I went to visit some friends in OK and ended up with acute appendicitis that ruptured because I didn't go to the emergency room because I didn't want to bother my friends family. Whoops! Learned my lesson on that one. Take what you can with you and don't be afraid to speak up and tell your friends if you can/can't do something or if you need something. And if you end up in the hospital, well at least you have friends with you! I know that sounds really bad but...;) Best of luck and HAVE FUN!
Einstein
- By Vicik
- Posted June 30, 2009 at 2:15 pm
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for my two cents worth i think you should go. it really is all about having a positive mental state as best you can. it will be good for you to get a few hugs and have friends wish you well. you'll feel good afterward that you took the risk and moved forward a bit with your life.
go for it.
John
- By Novagrad
- Posted June 30, 2009 at 6:05 pm
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Jen:
I totally understand how you feel. I have not gone anywhere except to the Mayo Clinic since I got really sick. I think it's a very scary thing but like Marie said, if you don't go, you will not be freed of the fear. I think you should go. Your friends will understand your needs. They will also take care of you if you end up not feeling well - they are your friends, afterall! Have a wonderful time!
Mimi
- By nogo
- Posted June 30, 2009 at 6:30 pm
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Jen,
You've already gotten some GREAT advice, so I'll just add a little from my experience. First, you are right to feel nervous - it means you respect the potential difficulties. Second, you are right to know you'd probably feel a tremendous emotional boost by being away and with good friends. Third, there's a way to use the appropriate fear to your advantage. Use it to plan, being thorough about what to take and how to pre-plan for different scenarios.
I took my sister-in-law with me to Hawaii, where my parents and I had lived and she was dying of breast cancer. Her husband was in the hospital with complications from alcoholism. She was very thankful I went with her instead of him, because it could be about her and not about him. Her doctor made contacts to be sure there were doctors he could speak with and who could help in an emergency. I had morphine injectables, as well as all her other meds. I took my wheelchair that used to be my Grand Mothers and notes about all her needs in hand - off we went. It was a lot of work for me, but it was worth it. She crashed while there - not even 1/2 way into the trip, and I had to get her to the hospital. I stayed there with her until she died. (But that's a different story).
It does demonstrate, however, that there's almost never a condition that would require you to stay in your home or home town, if the proper planning is made. Everyone has given wonderful advice - I might add that your doctor look to see if there is a doctor where you are going that he knows and recommends, that he can communicate with should a problem arise.
I agree with others, however, that for one weekend, if you follow your usual routine to the best of your ability, you'll be fine, most likely. The good times are what you need! I heard a story last night of a young woman, whose RSD was considered untreatable. She went on a vacation where treatments were available and became well. Her raised spirits were given partial credit.
NEVER UNDERESTIMATE THE POWER OF GOD, AND NEVER UNDERESTIMATE THE POWER A HEALED SPIRIT HAS OVER A DISEASED BODY!
Have a wonderful time - you are the same person they've always loved and will enjoy being able to help in any way they can. That's what friends do.
Blessings, Jan
- By philsphan09
- Posted June 30, 2009 at 7:40 pm
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I think you should go too! Sometimes we have to prove to ourselves that we are much more then our medical histories. I know I feel like I'm a trainwreck. But if I go out with a friend, even if it is to run an errand, that friend sees me for who I am, not what I'm suffering through. Good luck.
michelle
- By Woeful
- Posted July 1, 2009 at 11:26 am
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Absolutely go! Use me as an example of what not to do. Like you, I used to travel a lot, within the U.S. and abroad. I've lost count of the times I ended up in emergency rooms in other states (and in Canada and Ireland), but I never let it stop me. After every bowel resection (I have Crohn's), I'd watch the calendar impatiently every day, waiting for that magic 6- or 8-week mark when I could start traveling again. Then I lost all my intestines in October to a blood clot. Now I "live" on the sofa at my mom's house (except the hour or two I get on the computer every day), I don't talk to anyone except my mother and doctors, and go nowhere but the doctor's or hospital. It. sucks. It's partly because I haven't found a way yet to wear clothing so I can leave the house, partly because of the pain and leakage around my drainage tube and feeling like a freak because of it, and in large part because I have this tremendous mental block. I just can't get myself off the "pause" mode. Don't let that happen to you. See your friends; go places; live your life. Grab happiness wherever you can. And when you get back, let us all know what a wonderful time you had!
- By plushy
- Posted July 1, 2009 at 10:19 pm
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Maybe if you could look up drs in the area and have their numbers with you it would be fine, if all your friends know about your problem i am sure they will work with you.The first time i left home was only 2 hrs away but i took things i felt i could eat if need be and phone numbers and i had a great time. sometimes you need to take care of your mind as well as your body.Have fun go good luck and let me know how great it was when you get back!!!!!!!!
- By Sanford
- Posted July 2, 2009 at 7:18 am
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I live in NYC but I'm writing this from Tampa (from the Oley Conference), where, of course, after several straight days of rain, it is dawning bright and sunny... when we're leaving. I've traveled all over the country since getting my g and j tubes, and while it can be a little trying to travel with health issues, if you don't go, you're letting the issues run your life, instead of you managing your issues.
- By charliegirl3
- Posted July 2, 2009 at 4:12 pm
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Woeful,
I am really sorry that you are having so much trouble. I found putting cotton gauze around my site and over the tube site with a gauze plastic coating protected me when I had my tube in. You need to try to get off the couch and go for little walks even if it is in your own back yard. You will feel better getting outside. I was open and honest with all my friends about what is happening to me and I know that really helped them understand what I was going through and made them feel relaxed about everyhthing. i hope all goes well with you. Charliegirl
- By Goldie512
- Posted July 3, 2009 at 7:05 am
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Jen, I'm so glad to hear that you have the possibility of taking a trip and spending time with friends! Go for it and have a WONDERFUL time!!
I think the advice that has been given - bring your own food, doctor's recommendation (in case there are any isses), make sure that your friends are aware of your condition, etc. are all great ideas. There is nothing more I could possibly add to that, but just wanted to say, GO FOR IT! Have a great time! You deserve it!
Mary Ellen
- By Gma
- Posted July 3, 2009 at 8:52 am
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Go for the trip! My daughter rode in the car for a 12 hour drive to our house just weeks after getting her GJ-tube and gastric pacemaker and after ten days rode back home. She did fine (even with a van breakdown that delayed us 5 hours and required riding in a tow truck, renting a car and sitting at Denny's until the taxi could come) She was a trooper and the trip really was very good for her. Work with the things you cannot control (vomiting etc) and take control of the things that will bring you happiness. Even if you have to eat baby food and vomit - do it. There are excellent Drs everywhere if needed. Go into it with a positive attitude and you will be so happy you did it. It will make you stronger........every little step you take makes you stronger and closer to your goal of good health - mentally and physically! Have a great time!
- By JulieKC
- Posted July 3, 2009 at 9:57 am
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Jen,
I think that this is a great opportunity for you to take some steps toward freeing yourself a little. We all know that stress aggravates our conditions, so take whatever steps you need to ahead of time to ease your worries, like you have already written down your doctor info, etc. Take your own food and blender, you don't want to risk messing yourself up. Give yourself plenty of time for the drive, so you can stop and rest, or take care of any problems that may arise on the drive. I think once you get there and get settled in with your friends, your worries will melt away.
I went to Arizona for a week with my parents in March to help them get their new house build started. I was a nervous wreck before, just convinced that I was going to be a sick mess all week. I was facing a 7 hour car trip to their current home, and a 13 hour car trip to Arizona the very next day, so I was scared.
I ended up feeling better that week than I have in 3 years, and haven't felt that good since! I got to see my grandparents, who are in assisted living now, and I haven't seen for years, and I got to be involved in a special time for my parents. I am so glad that I took the leap and went on the trip, I would have missed out on a great experience.
Your friends will be so excited that you get to be there, that they won't care about your eating needs. A little bit of fun and relaxation could work wonders for you, and give you a pocket of relief and joy that you will remember forever.
My heart and thoughts and prayers are with you, I hope you are able to make the trip, and you have a great time!!!!
Julie
- By prettykitty
- Posted July 4, 2009 at 6:13 pm
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I don't think it would be rude to bring your own food and blender. Just explain that because of your gut not working properly, you have to eat stuff ground up and act like its no big deal.
I can still eat most solid foods, but some, like a couple veggies and fruit, have to be ground up like baby food. I also can't eat regular sized meals, only small ones now. One time, my friend and I went to a restraunt and I asked for a children's menu. Well, the waiter explained to me that I couldn't order off of that because I wasn't under 12 years old. All I did is explained to him that I had gastroparesis and I couldn't eat regular sized meals and showed him my feeding tube. I just acted casually and he brought me a kids menu and didn't say another word about it.
My first adventure out on my own was a bus ride to Olympia to volunteer at a local nursing home. I was worried about having to have my feeding pump hooked to me the whole time (even though all it had in it was water) and having to take my afternoon meds via tube in the staff lounge. Well, after 8 hours of working without any trouble at all, I got over my fear rather quickly. I plan on staying for 3 days in Seattle in September for a United Methodist Women conference and that will be my first overnight away from home with a feeding tube. But, its just like when I spent the night away from home with an ostomy appliance: I treated it like any other overnighter, just with a couple more things to pack.
I'd just bring a small folder that has printed sheets of your meds, medical conditions, emergency numbers, ect. just in case you have to go to the hospital. It always seems like when you are sick and in pain is the time when your brain forgets the simpliest things, like the name of a medicine.
HAVE FUN!!!
Jessie
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