The dread of traveling

[mac]

Last night I responded to a suggestion of going on a trip to a city 3-4 hrs. away to see a show, by saying I would only go if there was a bathroom on the bus or train. I was later accused of always being negative and paralized by fear by my husband. He just doesn't understand how painful traveling is for me when I have to wait to get to a bathroom. Or the vibrations in the car causing increased pain even if I take medication. I dread traveling it is not "fun" for me. And I am of course always "negative, not fun, and paralized by fear". If he had IC for one day, he could realize what my life has been like since I was 10 years old. thanks for listening to me vent. I am very depressed.
Mac

[Teri]

I can't write what I want to write cuz I'd be deleted immediately mad.gif Why don't you grab him by the family jewels and ask him how it feels and if he'd 'feel' comfortable riding on a bus for 3 or 4 hours like that, knowing that with each passing minute the pressure would only become more intense. I will NEVER understand WHY they think we enjoy being able to do nothing but hang out in our bathrobe laying on the couch all day. I don't even try to explain to my husband anymore. It's either yes or no. I don't go any farther than that. I'm not going to get pulled into his BS games, I just don't have the energy. The last grandchilds birthday party we had at Chucky Cheese's (a horrible pizza place for kids that is LOUD and obnoxious even for a normal adult) I needed to go home. I was sick, my pain was bouncing between an 8 and 10 and he flat out told me no, he wasn't ready to leave. I said "no problem, from now on we bring 2 cars" and that's exactly what we will do.

If I don't look out for my own fanny than who's going to??????? I sure do wish that I could make this easier for you or share some wonderful words of wisdom....the only thing I have to offer is to let you know that you are NOT alone in this battle.

sending tons and tons of gentle hugs~

[lm2]

No you are certainly not alone. I tried to explain to my dad the other day how a 20 minutes car ride was a really daunting and unpleasant prospect for me and he told me I was sick in the head. frown.gif I also don't understand like Teri said why they think this would be a CHOICE of ours. I was completely normal for 26 years; it's not like I'm some lunatic making this up. I think they just can't understand because they can't see it and have just never lived it...my mother was always in pain and I never fully understood (until now). But when it's not you, you just can't get it. I think it's also a defence mechanism because it pains them to think it might actually be as bad as we say. I wish I knew what to suggest... confused.gif

[Amanda]

Teri,

You have quite a personality--- and I love it!

Amanda

[Tina Nacho]

Personally, I think we should put him on an Interstim...that malfunctions. Maybe that's the best way to get some of these insensitive SOB's to either get with the program or just shut up for good...the little wimps. They couldn't stand the pain for even one hour.

Ok...I'm done <img src="graemlins/scream.gif" border="0" alt="[scream]" /> &gt;Tina

[mac]

I want to thank everyone who replied with your kind understanding. It's a hard life sometimes with IC but I am thankful there is a site like this were there are others out there who can truly empathsize with me in situations like this.
Prayers for better days for all of us, and a a more compassionate world to live in.
Mac

[bellbottom_blues]

I dread traveling and visiting other people since my symptoms worsened. I go home for Christmas every year and every year I look forward to seeing my family but not to traveling.

[Kelli]

I live out in the country and once a week, usually on Monday, I travel into town to pay bills, get groceries, ect. By the time I get home I'm wiped, I put the frozen and refrigerator items away and leave the rest for hubby to do when he gets home. I am lucky though to have a guy who understands what being in pain is like. He was involved in a near fatal car accident a few years ago and his back is permanently screwed up and his left hip pops out of place from time to time. So he understand about pain. I just dread when on the weekends when he doens't work and he wants to go to town to run here to get this and go there to get that and I wanna go look at this, I just KNOW I'm going to be miserable by the time I finally get home. Hubby blames it on the car we have. It has leather seats and they arn't the most comfortable things in the world. He thinks if I had a more comfortable car, I wouldn't hurt so bad. I just wish there was a way we could be in the car without all the pain mad.gif I have tried pillows, laying the seat back, using hot packs, and I still can't tolerate riding for too long. But I hate staying home by myself frown.gif

[liz2]

Traveling long distances tears me to pieces, so I know what you are going through. On a bad day, even riding into town hurts. I use lidocaine jell inserted into my urethra for long distance travel; that is the ONLY way that I can ride in a car for over an hour. <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[mtpockets]

To liz2:
I just read your note about the Lidocaine Gel inserted into Uretra for travel. I can't wait until my Urologist's office opens this morning so that I can call and request a script of Lidocaine...I have been suffering so much and your suggestion may have just made it possible for me to travel to my son's wedding...thank you, thank you biggrin.gif from MT Pockets

[lm2]

How does the gel work? Is it like the little tube they give you before a catheter? I called my uros office a few weeks ago to ask for this after Teri mentioned it, but of course they didn't call me back.

[Teri]

The lidocaine comes in two forms....one is just a plastic tube, it does come with an adapter so you can insert it but you end up with more lidocaine on the floor than in the urethra. You DON'T want that one. The one I am using my uro and his nurses refer to it as the "lidocaine jet" It's made of two parts, the empty end, which will end up being the injector and the glass end, which has the actual lidocaine in it. Once you screw the two together you get a scarey looking needle <img src="graemlins/eek.gif" border="0" alt="[eek]" /> <img src="graemlins/eek.gif" border="0" alt="[eek]" /> But, the tip that goes into the urethra (which is made of hard plastic) is actually quite small and since I've spent alot of time looking in the mirror at that part of my body (I self cath wink.gif it's amazing what your urethra will open up to so don't let the appliance scare you. DON'T let your uro or his staff give you the line of crap that they use this for in-office procedures only.....it's just a script!!!! You may have to hit a few drug stores or even a hospital pharmacy to get it filled but for me, I don't care if it only works for 15 minutes at a time....I'll take it rolleyes.gif

IC SUCKS~and all that goes with it sucks too frown.gif
p.s. can you tell I"m in a mood today <img src="graemlins/baby.gif" border="0" alt="[baby]" /> <img src="graemlins/baby.gif" border="0" alt="[baby]" /> <img src="graemlins/baby.gif" border="0" alt="[baby]" />

[lm2]

Thanks Teri - it only lasts for 15 minutes? Well I guess I'll take that too...how often can you use it? I have a feeling they won't give this to me - they're pretty strict here about rules like that. frown.gif

[Teri]

This drug is a non-narcotic drug...I get them by the box. There are 25 in a box. When I'm ready to rip my crotch out I will use a whole tube. When it's 'just' normal I want to kill pain I use 1/2. You'll never know until you try it....I'm just so glad that I tried it. Last night I could NOT go to sleep cuz the urethra wasn't willing to sing sweet lullaby's to me and it dawned on me <img src="graemlins/eek.gif" border="0" alt="[eek]" /> my urethra was MAD so I shot in some of the lidocaine and within minutes was able to fall asleep.

[lm2]

Ok thanks...that sounds appealing. I have been having this pain in my urethra since october 2000 and I still think of it as a "new" pain that's going to go away. rolleyes.gif It's been especially bad the past few weeks and I just can't shake it. I'll try calling them again but I won't hold my breath on them calling me back.

[Bronx]

So glad to read what others say because yup even 20 minutes in the car canmake my life HELL!!!

[songbird7]

Cars and planes hurt. My partner is understanding but said to my daughter in law about me and travelling, "She never wants to go anywhere." I said it bothers me with IC most of the time and the answer was a casual joke? "Just leave IC behind." to which my daughter in law chimed in repeating this. My partner is very sensitive and compassionate about the IC but doesn't see to get what travelling or even bus rides do to me with IC. Making a joke about it doesn't sit well with me. Anyone else have this response from partners and family members? If so, did you talk about it? When I did the answer was, "It was supposed to be a joke." Sheesh!:woohoo:

[Mothergoose]

traveling is a challage but with time my husband has learn't to give me a little slack. I HAVE HAD TO SAY QUITE OFTEN, WHAT PART OF I NEED A BATHROOM NOW, ALLOWS FOR ANY CHOICE ON MY PART.

for car and plane travel, i take muscle relaxers, i have pillows, blankets, and heating pad (hp goes every where with me)

He loves to travel so I try my very best to be a good sport. But we have just returned from a 7 week excursion and i came home really sick again. The last couple of trips I have gotten uti's which haven't cleared up, and by the time i get home it has spread to my kidneys. I take Ab's with me to take and I do take them, but it dosen't clear up completely.

We have been home 10 days now, i have been in bed by 4pm each day, tried 2 ab's and ab's shots, i have been trying to get all the things done which need to be done, it took till today to get unpacked, i still haven't looked at the bills.

The thing is he wants to visit friends etc, i just can't, h*** i can't even seem to cook a meal. today he asks me to go to friends, i said no, he said why, i said i really try not to complain, but i am too sore and feel too lousy to visit anyone, (and he never wants to come home). I just don't appear to be really sick as i have learn't to hide it well. So 4 hours later here I sit by myself.

I have found lidocaine comes in 2%gel and 5%ont, the gel can be put inside but the ont stays on way longer and can last a lot longer. Maybe a combo of both might work better.

good luck mg

[amonkey]

Traveling long distances tears me to pieces, so I know what you are going through. On a bad day, even riding into town hurts. I use lidocaine jell inserted into my urethra for long distance travel; that is the ONLY way that I can ride in a car for over an hour. <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

Thank you!!! My pharmacist accidentally gave me a pack of small tubes instead of one when I had my last procedure. After reading your post, I tried the gel. I can go to bed now and sleep. I'd been using an ice pack - which helped, but not like this. Oh my gosh!

Annette

[curlycue]

hello, my name is ariana i am curlycues daughter. i am ten years old. my momm has IC. she is cvery sickly. :) i have the book My Mom Has IC. she has to go to the bathroom a lot. every 6 months we havwe to go to mexico for cheaper meds. my momas doctor has recently retired we have to go find a new doctor in san diego, i am doing my first communion. if you want to come you have to ask my mom first i have heard so much about you guys :(

[ICNDonna]

Ariana, I wish I could come but it's very far from where I live! Please give your Mom a huge hug for me.

Donna

[Mothergoose]

Ariana

Hi Ariana it is very nice of you to write here for your Mom, that way if your mom by some off chance gets really sick you can write and ask people here what you can do to help her, or just write to let us know she sick, we often pray for others when they are sick.

It sounds like you are trying to understand what is happening with your Mom you should be very proud of yourself, many of us have family members and freinds that are less then understanding. My youngest son is my rock, always there to help me when needed, running errons, doing house work, bring drinks and making me food, he for the most part knows my diet, and my allergies. Sometimes he may just lie in bad and watch a movie with me, him just being there is nice and means a lot to me. Sometimes people with IC get a little isolated because of needing a restroom so often or not being able to do what their freinds are doing.

I just can't tell you enough how important it is to a person with IC to have someone there for them, I don't mean that others are not, but often adults have to go to work and are not available the same way.

I am glad to hear you are doing your first communion, it is a big and meaning ful step and you are pleased you are doing this or you would not have invited people to come. So many young people today are not prond to say they love Jesus for fear of what their friends will think. You sound like you are a bright lovely girl and I am sure your mom is very proud of you. I would love to come to your communion, but I too live very far away from you. I will say a pray for you on Sunday.

Thank you for writing to us to me it is a sign of how much you care for your mom, write again anytime. You may even be able to find someone else here who has a child about your age to talk with,with your mothers approval first, this forum is good and monitered very well, but you do need to be cautious
as to who you communicate to on the web.

Nice to meat you Mothergoose