Log in

No account? Create an account
08 August 2012 @ 01:09 am
I have been suffering from for what the past year or so the doctors thought were recurrent kidney problems. I was getting uselessly treated for the past year. Recently they have given me the diagnosis of IC. They gave me Ketoralac for pain, and with my luck, it caused internal bleeding and now I am no longer able to take anything for pain other than tylenol for minn. 12 months. As many of you know this is quite painful some days, as tylenol does hardly anything at all and the pain from IC can be excruciating. I was looking for any advice anyone would have on a way that I could manage this pain without pain meds. I am a little bit aware of dietary restrictions that I should be on but would be even willing to try even more of that if I were to find out new ways or eating habits. Thanks. I hope you are all taking care. 
25 July 2012 @ 01:25 am
I just wanted to say hello,
I've had IC for 8 years, it's been severe for 2, I have 2 rounds of the filler, i can't think of the real name, sorry.
and now I have interstim, which I really like so far besides the leg pain but thats something that has to be worked out.
11 May 2012 @ 02:08 am
Do us interstitial cystitis have-ers have any extra concerns regarding vaginal and urinary tract infections, other than "welcome to Pee City, population: you"? Like, can bacteria (or yeast) permeate our damaged bladder walls and cause more widespread infection?

I mean, I assume my doctor would have said so if it was a really serious concern, but is it something that should be on my radar at all or am I just being paranoid?
27 December 2011 @ 02:26 pm
I have a history of UTI's, so right before Thanksgiving, I was feel symptoms and I took a home UTI test. It came back positive for white blood cells, so I thought I had an infection. My doctor did a culture and sure enough, no bacteria was cultured.

My doctor then told me that I have IC. He told me this over the phone, so when I saw him a few weeks ago, I asked him if there were any drugs I could take to help. He said that it's a stress thing. I told my friend, who also has IC and she suggested D-Mannose.

Well, three days ago, I started having symptoms again. It was ridiculously hard to sit through Christmas Day because of the pain. It's really frustrating because you think you have to go, and yet nothing comes out.

Has anyone tried D-Mannose?

I was also thinking of asking for Pyridium from my doctor for when the pain is really bad. I've had it before and it works to take the burning pain away.

I'm also on Lamictal and I read that it helps with nerve pain. I don't know if it will or won't because I take it for other reasons.
01 December 2011 @ 07:13 pm
Because sometimes the best advice is the kind you *don't* follow

Current Mood: amusedamused
16 October 2011 @ 04:38 pm
Hey y'all--I got married last month! In fact, tomorrow is my first luniversity. :) (One month married, that is.)

Naturally, I had to blog about it:


And about my wonderful fabulous amazing honeymoon:

Current Mood: chipperchipper
24 September 2011 @ 04:50 pm
I have a guest blogger on Travels With Pain!

My friend Laina has just started a blog called Keeping off 200 Pounds. Which she's in the lifelong process of doing. She amazes me continually--in a world of fad diets and yo-yoing, she lost 200 pounds and has kept it off for more than 8 years now.

When I started reading her blog, it became clear that a lot of the tools she uses to maintain her weight are similar or even the same as the tools I use to travel with pain. And I know that it's tough to control food intake on the road. So I asked her to guest post with me, and she wrote these two great posts:

* http://travelswithpain.com/2011/09/20/how-to-travel-while-managing-your-weight-part-1-vacationing/

* http://travelswithpain.com/2011/09/22/traveling-weight-management-part-2-business-travel/
Current Mood: cheerfulcheerful
25 August 2011 @ 06:20 pm
Traveling with pain is scary. No doubt about it.

Stuff happens on the road. In Amsterdam, my hotel room was robbed while I slept. On the balmy island of Moorea, a roach crawled into my ear and got stuck. I starved for five days in Tuscany.

All that (and more) happened back when I was under 30 and perfectly healthy.

Now the number of things that can go wrong has increased drastically.

Read more at http://travelswithpain.com/2011/08/23/fear-of-traveling-with-pain/
Current Mood: contemplativecontemplative
21 August 2011 @ 04:24 pm
So one of the sponsor/exhibitors atBlogHer 2011 was Lee Jeans. I went up to their reps on the expo floor and asked the Big Question:

“I’ve got chronic pelvic pain, and jeans dig into all the wrong places, especially when I sit for a long time. Airline flights especially. But I love jeans. Do you have any that you think I could wear on the road and still be comfortable?”

One of the booth workers…wait for it…had an answer for me!

Current Mood: complacentcomplacent
11 August 2011 @ 03:43 pm
It's not quite my usual how-to post, but I've written a 4-part journal of a solo trip I took last week.

Traveling Alone, Part 1

To get to parts 2-4, click the link to the title of the next part at the upper right corner above the title and text of the post.

I'd love comments on this series. Is it a good read? Do you think it will help *you* travel alone? Do you think I'm right in how I travel solo, or that I'm a total idiot and it's lucky that I'm still alive?
Current Mood: accomplishedaccomplished