Things I CAN do!

[Julie B]

Well, it has been nearly 6 years since I was diagnosed, and nearly 10 years since the onset of my most severe IC. I just want to tell people, especially people who are newly diagnosed that you CAN get better.

Your path to feeling better will not be like mine, so I am not sure it is wise to give a laundry list of things I do to avoid IC's wrath.

What I want to do is list for you the things I CAN do now that I COULD NOT do 6 years ago:

Walk 3-4 miles

I can RIDE MY BIKE!

I can function like a real person for at least 12 hours a day (maybe it isn't 16-18 like some but I cherish the good times and I think I accomplish more than others do with MORE time on their hands!)

I can eat some citrus, tomato products, some caffeine, and some chocolate, although none of it in huge quantities.

I can travel pretty comfortably..........

AND

......this week on vacation I rode both a mule and a horse.........and I didn't have to go to the bathroom much more than anyone else!

I just want you to know.......that at my worst I figured my life was over. But it wasn't..........and I do things and eat things and experience things I never thought I could again.............

Hang in there......

Julie B

[SheriG]

Julie,
the first thing I did this morning, while waiting for my wee one to get up was to turn to the boards, and the first thing I read was your letter. Thanks for making me smile first thing in the morning. Your post was uplifting, and it made my day! grouphug Sheri

[tillysav]

Good Morning Julie,

Your post was the first thing I read this morning. Wow! I am happy for you and thankful to you for sharing it with us. grouphug You are soooo encouraging. Things can and will get better. Thanks for the posting. You made my day and it's only 7:00 a.m. in Oklahoma. Tilly :)

[Dixiefireball]

thank you julie for takeing the time to post this it does give us icer hope and i really hope our newbie read this.
i can do more then i could a year ago i'm slowly getting better and i can eat most things i want. but right now i'm in bladder hell from a uti and now a yeast infection. banghead but it will go away with time. thanks for your post grouphug

[dyno]

Julie,
Great post! I also have far more good days than bad and do most everything I want. I am glad you found a good treatment combo that works for you. :)

[yvette]

((((((((julie)))))))))))))
what a wonderful post! Bring me back some of that Hawaii Sunshine! Glad to hear you and C are having a great time and that IC isn't stopping you from enjoying yourself.

Julie you truly have learned what it is to "pace" oneself.....I think that is really important.

Hugs,
y. :)

[Julie B]

Well, yes the vacation is coming to a close.....and Hawaii is having some interesting weather today! WIND like crazy, one of the sailboats that has been anchored off the beach was there on its side this morning.....People were great.........cheering the guys on as they tried to right their craft and get it back on water before anything happened to it. Gotta love the hang loose mentality........

I am still doing well, and as soon as I get my pictures off Carolyn's camera I will post the mule and horse pics LOL.....I am telling you it was a blast!

Hugs to you all.............I will be back to the groove of ICN soon.......... :-) grouphug

[jaime15]

{{Julie!****
Hawaii??? I'm sooo jealous! Going on vacation in Jan. for a short 2 hour flight had me frazzled. (Not knowing whether I'd spend lots of time in the lavatory or consoling a crying two year old.) But I can say it was smooth sailing in the skies! wink
For a trip like yours, wow, I'm impressed!! I hope someday to be there and be able to take that long flight.
I'm so glad you're doing well. And I know this had to be such fun....Take care and enjoy the rest of it!!

[arcticfox]

Hi Julie!

What a great message! I am so encouraged that I can do more, once I get the IC diet controlled.
This weekend I am trying a recipe from the IC cookbook! I am so excited about that! Hope your having a great time in Hawaii! I have a friend who is visiting Hawaii too and I can't wait until she gets back to tell me about it!

Arcticfox hi

[gtg728]

Yeah Julie I am up doing laundry and looking out the window at 12" of N.C. snow. I was delighted to read your post! I have been diagnosed X 2 yrs,so your post was quite uplifting. I hope Hawaii was wonderful it sounds as though it was wonderful. It was soooo encouraging to read of the way you have regained some of your pre-IC life. grouphug Thanks for the post!!

[Julie B]

People are asking me what I have done to get better.........hmmmm.....One thing I have found out over time is that IC is individual and the treatments are also. I do take medication, atarax is the mainstay, and I take one vicodin a night with an extended acting Tylenol.

What those do for me is get me a decent night's rest. I still get up 3-4 times, but not 20.....

And when I need to rest during the day, I do. It is hard sometimes, my husband will wonder how I can be perfectly fine one minute then falling asleep the next. I have given up trying to figure out the fatigue, it is what it is.

As Yvette said, it is important to pace yourself. In this post, I really don't want to focus on what I cannot do, because it is plenty. Then again, my diabetic patients have to watch what they eat, and arthritis patients can't climb mountains, and cancer patients can lose their hair during treatment.

Life changes all the time. This is our change. But I don't sleep on the bathroom floor anymore, and I can go shopping at the mall without making everyone crazy with bathroom stops.

Each moment of feeling good is a blessing.

Let me know how YOU are all doing? Are there other people who want to jump on this and tell people what they CAN do, instead of focusing on what they can't do?

On my way home now..........I will check this when I get back to Michigan! XOXOXOXOX

[Iris]

Hey great post Julie, very uplifting and I know you are having a great time, being able to do so many things, that you have not done in a while, way to go! keep on truckin, hugs Iris. hi :D hat

[buana1]

This is great Julie. It's so easy to focus on what we cannot do. And when I do this, I just feel worse.

What can I do? I now go hiking and love it. In the past I never would have attempted it....what would I do if I needed the bathroom?

It used to seem so difficult, but it isn't. I pee before I leave home. If there is a bathroom where I am hiking, I use it before I hit the trails. Then when I gotta go, I just find a rock and "go" behind it. At first I was embarrassed to tell my friends, but now they are looking for rocks for me.

Getting out and enjoying myself feels so good, and liberating. I think I actually need to pee less often when I'm not stresed about it.

Yes, I can do things where there is no bathroom.

[Julie B]

YES! Less stress, less pee!

I made it home this morning after a night on the plane. It was my only challenging day, with several trips up to the bathroom on the plane on the 8 hour flight. I finally dug into my bag for an extra vicodin and some pyridium. No apologies for making a little noise in the middle of the night. Jill was the one who taught me if I need meds take them, if I need to rest, rest.

I came home and we bubbled over with our stories.......then I took a 4 hour "nap" and only got up once to void.

Who else has good stuff they can do???? :-)

[jaime15]

Well, lucky me, we have been all over the place this weekend looking for a new toilet and shower. We are getting ready for this weekend.
Total bathroom makeover. What fun, huh?
But only one time I came running home to use the bathroom. That's so good for me, cause I've been in a flare for two weeks.
Something I'm looking forward to is hot weather. I have finally taught myself to use the "woods" when we go out on the lake. I could always do it before being dx'ed then couldn't til last year. So I've been able to add that back into my lifestyle. :) We live for the water around here.
I'm so glad you had a great time on your trip!
Hugs! grouphug

[dyno]

Things I can do:
I go fishing and boating, I like to hike and travel. I really do just about anything I want to. I just have to prepare, and if I have to pee behind a bush in the timber I do it. If I have to stop to pee when we travel, we stop. I enjoy life. :)

[SharonA]

Things I can do, now...

Shop till I drop...very important lmao
Have fun with my husband...
Ride in a car for longer than 30 minutes...
Enjoy being with my friends...
Enjoy Sunday School...
Sit through a sermn at church...
Walk on my Tread mill...
Go to the Zoo...
Go to see a movie and sit all the way through...

But the biggest thing I can do now...plan a Mission Trip to Afghanistan in early May. Yep, you heard me right...Afghanistan scream

[Julie B]

Afganistan! Way to go Sharon.......that is amazing! How long will you be there and what will you be doing?

angel

[arcticfox]

You ladies Rock!

You give me such encouragement when I read what you can do! Thanks!

Arcticfox hi

[SharonA]

Hi, Julie and everyone else...

You asked about the trip to Afghanistan. We (my husband, myself and several team members) will be leaving on April 30 and returning on May 12. We will be giving leadership training to representives of the Afghan Government. We are going as members of the "Memphis-Afghan Friendship Summit". You can go to www.mafsummit.org (http://www.mafsummit.org) (sorry, I do not know how to give you a link to this site) to learn more about this group and it's mission.

This team has been invited by the Afghan Government to help them learn how to be productive leaders. Even though most of the team are from a church here in the Memphis area, we do not publicly speak as Christians. This is a mission of developing relationships with the Afghan people and leadership. They are very aware that we are Christians and are respectful of that. When asked questions, we respond.

My reason for going is to reach out to the Afghan Women and try to help them in their quest for Women's Rights.

[SharonA]

Surprise, surprise...the link was automatically given. lmao

[TerryEllen]

Thank you so much...I'm new and in pain often as you can imagine. I see so many horror stories out here, and need to see that people do recover and have a life again. My world has been reduced to my home, my activities totally curtailed - I really miss my life and am hoping to return to it some day. Started Elmiron this week...Elavil next week, then antihistamines. Praying this works...

[julie grace]

This is such a good thread! its nice to hear about the positives. Ive been an ic sufferer for 22 years. My symptoms and flare ups have deminished considerably from a 10 in severity to a 2 or 3. Today i can go dancing.. i do ceroc dancing. I can go to movies and sit through them without discomfit. I still sit by the isle and the exit to minimise stress so i can slip out if i have to. But i havn't had to for ages. I teach violin and have a reasonable number of students. My lessons can last from half hour to an hour. So i can go in between if i have to. I can hold a feeling of urgency for ages! I can go for long walks. I have an enjoyable sex life. (ic used to interfere there too) I can go to shows and concerts. I play in a band. (fiddle player). I can drink coffee and alcohol in moderate amounts. I can go for long car drives. Usually i am in reletive comfort, but when i have a flare up it is manageable. This is a triumph due to a variety of self help tactics. I have tried the following..

osteopathy (aligns the spine... pelvic twist can hinder bladder function), physiotherapy for the bladder...bladder training and drinking water, kegal excercises to strengthen the voiding muscles, acupuncture, warm clay wraps...(very nice comforting treatment highly recommended) massages, diet modification, vitamen/mineral supplements, gone to a naturopath, practice meditation, yoga, deep slow breathing, herbal teas..mind over matter efforts, to plain ignoring the problem efforts. stress reduction. life management tactics... adopting a philosophical attitude...
thanks for this thread and i wish you all good health
julie