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 [img]mad.gif[/img] 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. [img]frown.gif[/img] 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... [img]confused.gif[/img]

[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 [img]mad.gif[/img] 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 [img]frown.gif[/img]

[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 [img]biggrin.gif[/img] 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 [img]wink.gif[/img] 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 [img]rolleyes.gif[/img]

IC SUCKS~and all that goes with it sucks too [img]frown.gif[/img]
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. [img]frown.gif[/img]

[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. [img]rolleyes.gif[/img] 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.