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LBTC
02-01-2007, 10:42 PM
Well, ladies

I hate admitting this, but I am feeling sorry for myself tonight.

It's difficult adjusting to this new restricted diet. It's hard knowing that I have a disease that could be very serious at some point. I feel bad feeling sorry for myself when so many others are having worse things happen in their lives.

But if I ignore this feeling it won't just go away, so I'm trying to release it by writing it. Maybe it will dissipate?

I ask the question why me? Why is it that there are people who eat fast food, donuts, gravy, gallons of cows milk, artificial sweeteners and drink loads of coffee that don't have this??? I don't do those things. I haven't been perfect, but I have always been careful about what I eat, I have been reading labels for 20 years!!

It's frustrating. Tonight I came home from work with a headache and exhausted. I took my medication, then layed on the couch huddled in a blanket. My cold hands and feet would wake me up with a shiver, then I'd fall asleep again. When I finally woke up I felt like I'd slept a long time but wasn't really rested.

Argh. I'm embarassed to admit that I can be so self-centered and so pathetic. I hope I wake up with a song in my heart and butterflies around my head....

Thanks for listening.

Hugs and butterflies,
~T~

margo49
02-02-2007, 01:36 AM
Having faced cancer and a life-threatening accident I would give you this advice fwiw:

Remember that your body itself is always managing itself towards wellness and balance on all fronts. We help it along by acting on medical advice.
But it is still a process that takes *time* and has its moments of crisis - physical and mental.
However the *direction* is always towards health and wholeness.

I think it is very important to try and keep as calm as possible (not always easy) and to concentrate on positive and beautiful things.
And keep an eye out for those wonderful moments that are all the time there in our life but we don't always pay them particular (enough) attention eg sunrises, sunsets, small acts of kindness that we receive, see or even hear about (like at the very end of the tv news).

Thinking of you...

uk elephant
02-02-2007, 03:47 AM
Don't feel guilty about feeling down! I totally understand, as I tend to do the same thing. It's taken me years to come to terms with being chronically sick. I still occasionally curl up under a warm blanket feeling sorry for myself. What I've found is that I usually feel much better in the morning. I'll allow myself the occasional evening at home under a warm blanket on the couch with some yummy treats (whatever I feel I can handle at the time, regardless of calories) and a hot cup of tea and something comforting on tv. Maybe even a sad movie to cover up the fact that I'm sad for a very different reason. Then I go to bed, wake up the next morning feeling tons better. Other things I find helps is to look for signs of progress. Stablilising a chronic illness and brining it into remission isn't done over night. But little steps of progress are evident along the way. For instance, having a whole day without running to the bathroom (or more hours between runs than previously), or noticing that my joints aren't aching so much anymore. Or realizing that I just ran half a block to catch the bus and my stomach didn't revolt (which is usually does when I try to run which is why I gave up running for exercise). Or any other number of little things. Or something completely unrelated to my own health like seing wildlife on the bike path coming home from work or a beautiful sunset, or a good song on the radio (no matter how I feel, I cheer up and start dancing whenever MaisQueNada by Sergio Mendes & Brazil66 comes starts up).

Whatever you do, remember that it is perfectly normal to feel sorry for yourself occasionally. The feeling does pass. Just make sure to take care of yourself!

(((((big hugs))))

koala
02-02-2007, 06:52 AM
Fight it! Fight it hard, like you really mean it! Don't let it drag you down into a cycle of depression. It's winter, which makes it harder to be positive because it's cold & dark. So try hard to get some sunshine on you every day, and keep physically active. Keep those endorphins hopping around. If you can't ride right now, do something else to raise that heart rate & get the blood pumping.

Go ahead & curl up under the blanket with a hot tea or cocoa. But don't do it if you are feeling sorry for yourself, do it after you've worked hard at something to reward yourself. And pick up a book, keep the mind active, too.

Every single person who posts on this forum is a fighter. We wouldn't go out & ride day after day in all kinds of conditions if we weren't (either that or we're all insane!). So now it's your turn, & fight 'em good! Write whenever you want us to listen. But be warned -- we just might write back!

Hugs & butterflies to you,
and thanks for sharing your photos, they are so beautiful...I will be checking back to see more of them.

KnottedYet
02-02-2007, 07:11 AM
hang in there!

Food is so tied up with comfort and cozy emotions, that it's very hard (at least for me) to accept that I'm cut off from a huge portion of it. But over time whatever you find to substitute for the previously meaningful foods takes on that same value and comfort.

Your diet is VERY restricted right now, but the ND only wanted you doing that for a few weeks, right? Then he was going to let you start adding things in? Can you look at it from an injury metaphor? Say you'd sprained your ankle, and the doc told you to rest it and heal for a few weeks. Wiggle your toes, swim, but no biking or walking. Then later he'd let you start adding activities.

It's sort of the same with your gut. Limiting it's "activities" for a few weeks so it can start healing, then adding things back in.

I've had years to figure out what I can and can't handle and the various behaviours my gut performs. Some days I can drink milk and eat peanuts, some days I can't. Some days I can lick envelopes (gluten in the glue) some days I can't. After your gut has some time to catch up, you will be able to get a better idea of it's behaviours. Give it these weeks of rest and it will likely be in a better mood!

I'm not a patient person, so I won't tell you to be patient. Do whatever you need to get through the restricted phase. Just don't "cheat" if you can possibly help it. When things have calmed and settled down in your gut you and your doc will be able to get a clearer picture of the next steps.

Meanwhile I'll drink all the coffee you aren't drinking!:D

Edit: By the way, I think self-pity has a useful function. I think it's a form of perspective-gathering and venting. My tendency is to wallow in it (I even sing "The Worm" song and REALLY wallow) and get it over with. The more ridiculous, the better. Once I've gotten my self-pity satisfied I feel so much better!

LBTC
02-02-2007, 07:39 AM
Thank you, ladies

This morning I still feel melancholy. I know that the weather doesn't help and that having to go to work today isn't great, but, hey, if I were to stay home I'd just wallow, so hopefully I'll get over it quicker this way, right?

Margo, thank you for the reminder. I've been sharing lots of hugs with my DH and my dog; and I'm going to go look at some of my photos of flowers and sunsets and bugs and stuff before I go to work.

Uk, thank you for understanding. This morning isn't much better, but I know I won't let this last. If tonight isn't better all by itself, I'll find some fabulous movie or music to help.

Koala, thank you! You're right, I will fight this. I've decided, though, that the extra support I get here helps in the fight. If I just pretend I haven't felt sorry for myself, it doesn't really heal it. So, now it's out there and I'm working on it. Tonight I will do kickboxing when I get home. If that seems too hard, I'll spin on the bike. Yes, I need to get more endorphins.

Knotted, thank you! What a great analogy. I was comparing this whole thing to injury before, but only focusing on the differences. When I had a broken shoulder the path to healing was clear, and took time. I hadn't thought about the similarities, so this is a really helpful thought process for me! The severe restrictions of the diet will go on for at least a few weeks, but probably months; but, you are right, there will be a time when I will be able to eat a greater variety of things.

Well, the feeling's not quite gone yet, but your thoughts are helping. Please keep them coming!

Hugs and butterflies,
~T~

ps - Koala, if you PM me your email address I'll add you to my pictures list - I send a picture out to a list of people virtually every day.

bouncybouncy
02-02-2007, 10:01 AM
In a backwards way I, too, am doing my own wallowing. I have not figured out why I feel the way I do but the wallowing seems to help seek inside and figure things out.

It is comforting to know that the feelings are normal and that you are not alone...at least for me.

Sending you Butterflies and may you find peace and health soon....


btw: I am a photographer lost in the cave of doing photoshop for others, not able to find the time or motivation to do my own...looking at your website gives me bits of inspiration that is slowing building to the point of longing to produce my own images....Thank You!

LBTC
02-02-2007, 10:50 AM
Thank you, Bouncy! It does help to feel less alone! But I'm sorry for the situation you're in and hope that you can find a way to a better place for yourself!

I've lived in a negative town, worked in an office with terribly low morale, tried to keep biking in a horribly fractured community, and finally DH and I decided to move. It's been a huge change and the only negative is this health issue. On the other hand, the health issue would probably still exist, but the town I was in before didn't have the same facilities so I would probably not yet have a diagnosis!

I think what I'm trying to say, bouncy, is that you owe it to yourself to explore some options and see what you can change so that you can love life again! Even if the only change is to find an hour a week with your camera and your eye and no other distractions.

Good luck!

Hugs and butterflies to you,
~T~

han-grrl
02-02-2007, 11:02 AM
Having a ruptured ulcer, and surgery and giving up my favorite flavors, i totally understand.

Remember to eat to live not live to eat. I try to keep things in perspective.

Bikingmomof3
02-02-2007, 11:06 AM
T,
I have lived with chronic pain for quite some time and I still have pity parties for myself. I find them actually healing in a way. I like the way Knot described them. :)
When I had my stroke I had a lot of issues and frustration. Why me, why at my age, etc. The limitations placed on me where not food restrictions, rather I was told I could not drive, ride my bike, swim, etc...and the medications just made me feel even worse. It took me quite a while to get over the anger/denial phase.
I think for a lot of us, when told we have something that is forever going to change us, we need to go through the stages of grieving until we come to acceptance. I accept what has happened to me, but that does not mean I give up! I ride my trainer on occassion-it is a lot harder than I thought it would be, but I do it. I do not drive-yet-as I would not want to be the cause of an accident, ever! I do run, but never alone. I could go on and on, boring everyone. :o
My point is a simple one, we all learn to deal with the hand we were dealt. And it is very normal to go through various emotions and it is good to reach out to others, to help ground us. You too will become a survivor and rise up inspite of your disease. *Hugs*

Hopefully, this made sense.

Duck on Wheels
02-02-2007, 12:07 PM
I agree with UK and BMo3. Very few go through life without any hardships whatsoever. Crohns is a tough one, but to live with. Still, your emotions are going to yo-yo over this, especially so early with the diagnosis while you're still working out how to manage it. Think of this like breathing -- out with the bad air, in with the good. Don't deny your emotions. Allow yourself to wallow when you need to. Let yourself have a good cry. Then when you sense you're bouncing back, draw those good feelings in deep. Congratulate yourself on finding that recipe for -- oh, say banana marengs -- that tasted so delicious and slipped through your guts with no pain. Be proud of how you managed to find a toilet in the nick of time. Be super proud of how much you're biking and working out!!! In other words, give the positive feelings all the boost you can when you sense them easing back in. But don't waste energy denying the bad ones when they're there; better to find a good warm blanky and a weepy movie and let them out.

Hugs and ... well, the butterflies are all hibernating here now, but I have pictures to remember them by. :)
Duck with Crohns.

singletrackmind
02-02-2007, 12:55 PM
http://i4.photobucket.com/albums/y141/smcr/hug.gif
Diagnosed at 28, large bowel removed at 48. She waited almost too long for that and felt better than she had in years after she healed. That was mom. She didn't like what was going on, obviously, but she accepted what was handed to her and didn't dwell...most times. She just kept doing the things she wanted to do despite the compromises and found pleasure in that. It sucks, it really really does. Writing stuff down and receiving support is therapeutic indeed. Don't feel bad about feeling bad, it's ok even if there are people in worse condition. Just try not to spend too much time dwelling because life is too darned short to concentrate on something you can't change. Geez, easy for me to say, huh?

My favorite movie is Life is Beautiful (sub-titled). I wish I were more like the main character. It's a terribly sad movie in some ways. The way Guido embraces life is very inspiring. Highly recommended for a wallow fest.

LBTC
02-02-2007, 02:29 PM
ICongratulate yourself on finding that recipe for -- oh, say banana marengs -- that tasted so delicious and slipped through your guts with no pain.

Hey, do you have that recipe?? Maybe I can start congratulating myself tonight! :)

Thanks again for your words of wisdom. I'm going to read through all of them again tonight and try to "digest" all of these wonderful thoughts. At the moment, the headache is starting again. I'm off to get another tall glass of water and something "yummy" to eat. Oh, it would be nice to not be at work today!

Hugs and butterflies to you all (my butterflies are virtual, so they don't hibernate at all, and they come in the best colours - all of your favourite colours and patterns, not just the silver and brown ones I see all of the time)

~T~

KnottedYet
02-02-2007, 07:34 PM
I don't know if you are into medition, but here's one I learned that I really like:

Inhale - pull in all the negative stuff that surrounds you, suck it right in!
Pause - transform that negative stuff into the positive stuff you want.
Exhale - breathe that positive stuff out so that it surrounds you instead!

Repeat ad infinitum! :D

Wahine
02-02-2007, 07:49 PM
Hey T,

I'm sorry to hear that you are feeling down. From what I can tell, this is not your natural state. I agree with Knott, you need to treat this like an injury and if you treat it right, it will heal sooner. If you treat it wrong, you'll end up back near the beginning and will have to start all over again. So try to not fall off the wagon.

Remember too that you're body is used to some of the foods that you are avoiding right now and that may be contributing to your melancholy. So remember that this too shall pass.

And BTW, I got a letter from my friend Tam in Vernon, she said she e-mailed you back but hasn't heard form you. You really should hook up with her. I know Tam through an Acupuncture course we took together in China. She might be able to give you some advice to help you along through this.

E-MAIL TAM!!

Hugs and virtual butterflies to you.

BTW - have you ever been to that cool butterfly place at Niagra Falls? It's amazing. If you're ever there you MUST go.

Aggie_Ama
02-02-2007, 09:08 PM
My husband is a new Crohnie and he is still feeling frustrated. Everytime he has pain or a bout of diahrrea he feels a little hopeless. He is working with nutritionist, but still is waiting to understand his own case.

I myself have a chronic movement disorder. At first the meds were worse than the disease and I felt hopeless. I cried a lot and it is okay. It is a lot to process when you are told your condition is manageable, but not curable. Especially for you, when it is all about food and pain.

My mom told me when I first starting shaking: "Sometimes you have to sit on the pity pot. But then you have to get up, flush and go on."

So sit a while, until you are ready to flush.

(((Hugs)))

LBTC
02-02-2007, 09:25 PM
Hey, Wahine

Thanks for the support! I think the food adjustment has both a physical and emotional toll. Tonight is much better, so, yay! I am determined to follow the instructions, but still wonder if it's okay to have those spice cubes...they are about 1cm cubed and the last ingredient in them is cornstarch.....I have not yet stopped using them and hope that I don't have to. The rest I am following closely, even bought soy sauce without wheat!

I did email Tam. It took awhile, but I did. She emailed back the next day and I replied right away to that. That was last weekend and I haven't heard back...so that's where that is. She was trying to hook us up with some snowshoeing buddies she knows.

And no, I have not been to Niagra Falls...yet. If we ever go, I'll look for the butterfly place. :p

Hugs and, well, you know,
~T~

LBTC
02-02-2007, 09:40 PM
Hi, Amanda! I've been wondering how your DH has been doing. Even with the frustrations, is he having steady improvement? I hope so. He's had a very tough go, and, I didn't realize, but so have you! Your support means a lot!!

I am determined that the diet restrictions will be a good thing. I'm looking forward to the weekly weigh in tomorrow morning.

As you can probably tell, I'm not feeling quite so sorry for myself tonight! yay!

Wish your DH well for me and you two take turns "taking care" of each other!

Hugs and beautiful butteflies,
~T~

LBTC
02-02-2007, 09:45 PM
Jennifer, Duck and Singletrack

Thank you! Your words of encouragement and understanding mean so much!

I'll bookmark this thread and come back to read it the next time I feel so low. You're so wonderful!

You'll all be happy to know that I worked out when I got home tonight. DH held the heavy bag for half of my drills and it was grand! I can hit the bag much harder when he holds it for me. And I even did a two minute drill at the end. I am pretty wiped now, but it feels a lot better than last night did!

And tonight's meal was baked chicken breast in a light marinade I whipped up with papaya, soy sauce, maple syrup and spices. It was particularly yummy.

Tomorrow night we need to find a great recipe for haddock.

Thank you so much. I feel supported, loved, accepted - that's so nice!

Hugs and super fantastic butteflies,
~T~

han-grrl
02-03-2007, 03:17 AM
I just finished reading Mind Body Balancing by Osho.

He describes how as humans, our "normal" is feeling bad. If we feel good, then there is something wrong with us. He says when we see happy people we think something is very wrong with them, and since misery loves company, we will try and "draw them to the dark side" so to speak.

Anyway...he goes on to describe how hard we are on ourselves, our bodies, and because we are so hard on our bodies we can have symptoms and health issues. By listening to our bodies a little more, we can also learn to love our bodies as well.

It has some wonderful lessons, and some wonderful silly little stories to even make you smile. I really loved reading it...

Smile

Hannah

Duck on Wheels
02-03-2007, 07:04 AM
... You'll all be happy to know that I worked out when I got home tonight. DH held the heavy bag for half of my drills and it was grand! I can hit the bag much harder when he holds it for me. And I even did a two minute drill at the end. I am pretty wiped now, but it feels a lot better than last night did!

And tonight's meal was baked chicken breast in a light marinade I whipped up with papaya, soy sauce, maple syrup and spices. It was particularly yummy.

Tomorrow night we need to find a great recipe for haddock.
...

Oh yes! Hitting something! One of my worst down periods we were lowering the basement floor. DH had borrowed a compressor drill and cut the concrete up into squares. I went down there with a sledgehammer and busted 'em all to pieces, imagining certain people's heads with every thump. Very stress relieving. :D

That chicken recipe sounds great. Hard to find papaya here, but it might be worth the trouble and expense if I could. Papaya's not my favorite fruit (I prefer melon and mango, with papaya somewhere down my list but not rock bottom), but it's s'posed to be good for the digestion and that combination sounds delicious.

Duck on Wheels
02-03-2007, 10:38 AM
BTW ... Crohns can, at least from time to time, be brought under control. Food restrictions can be eased. I've been on a low fiber diet for over a year now after one green apple landed me in hospital. I was told, then and earlier, that one of my problems was strictures due to scar tissue and that I'd likely need more surgery. I said ok, but first get my inflammation under control. If there are still strictures then, I'll go ahead with the surgery. Lately I think the inflammation is finally under control, and ... hey, not even the strictures are bothering me. I can eat a whole orange and not suffer for it after :D I can eat popcorn :D Tonight I've decided I'm fed up with cooked carrots and have made them grated instead :D So, maybe I don't need surgery after all, at least not just now. :cool: :)

Just thought I'd let the rest of us Crohnies out there that there are breaks in the tunnel, periods of light.