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Did they lie or is it just all of you and me?

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Crohn's Disease
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Posted 9/7/2007 8:42 AM (GMT -6)
OK so I have been thinking -- I know this gets me in to trouble. Anyway here goes:

When I was first dx they said this was a managable disease that could be controlled with medication so that I could live a normal life. Now I know that if we had "normal" lives we wouldn't neccessarily be on this board, but do you think that the majority of CD'ers do lead "normal" lives? Or do they just say that to keep us calm so we don't panic when they tell us we have this DD? They might figure we will adjust over time and begin to accept....

I feel:

Like my body is a traitor, I can not trust it.

Like my body is an alien - I don't really recognize it, and we speak different languages.

I ask my alien body - Can I do this? It doesn't respond it doesn't seem to speak my language.

I ask my alien body - Will I be able to get through this situation? It does not give me a response --- until I am in the middle of that situation.

Some times I go ahead and everything is fine, my alien body cooperates,

Some times I go ahead and everything is not fine, my alien body does not cooperate,

Some times I am just paralized by fear.

Now I don't want you to think that I am depressed because I'm not... I am actually coming to an acceptance of this disease (at least for now -- in two months I maybe completely unaccepting). I believe that all things happen for a reason, I just don't know why this has happened yet...

The catalyst for this topic? I went to my OB yesterday to have a fibroid removed from my uterus. When he re-examined me (he saw me 3 weeks ago) he said that the fibriod was so small now that he wouldn't remove it but that he had to freeze my cervix so that it would stop bleeding all the time. Apparently my skin was so thin that it would tear with even the minor contact of a q-tip. The purpose of this is to kill the weak cells so new strong cells grow back. He said I would have sluffing for a few days. Now I am leaking as if I was preg. and my water broke...... so I wonder is this the sluffing or am I just "defrosting"? Ha - oh and I am half serious....

I'll end my crazy rambling...

Heather

Posted 9/7/2007 1:57 PM (GMT -6)
Hmm, I still feel the sense of betrayal & loss.
I wonder what constitues 'Normal" or "Managable" This DD is so bloody unpredictble it gives me fits..

Matthew
Posted 9/7/2007 3:08 PM (GMT -6)
I am so sorry you are going through this. if you feel up to it at all you might try yoga or some other physical activity. I mention it just because it helps me to feel a better sense of connection with my body, rather than the alien feeling.
that's all I got...that and that we all know what a terrible pain it is to feel that your body is the enemy! hugs, yp
Posted 9/7/2007 5:00 PM (GMT -6)
I feel that I lead a normal life. I work, take care of my husband and kids, work out, go out with friends, go on vacaion, and so on....I do everything "normal" people do. Once in a while, I might not feel the greatest, and sometimes, I need to rest more than normal, but I know my body and listen to it. The hardest part for me was having to let things go once in a while.....like resting instead of vacuuming... :)
Posted 9/7/2007 5:50 PM (GMT -6)
ditto to chroniemom. I live a normal life as long as Im willing to modify it. I had to stop becoming embarassed about stating what I need. If I felt leaving class was out of the question then I could not go to school. But I go to school because if I have to go, I go. As long as I allow myself accomodations I can allow myself what most would call a normal life. I still have "different" routines bit its what I have to do to get by.
Posted 9/8/2007 8:32 PM (GMT -6)
It's been just over a year and a half since my diagnosis.  I've had to dig & scrap for any information to just get through the daily battles of this disease.  I feel I am coming to terms and acceptance with it, however, I too still feel my body has betrayed me.  I get frustrated sometimes but I've only allowed myself to greive once.  It just wasn't "how it was supposed to be".  I think I greived more for my family than myself.  I haven't seen remission yet.  I think I'm as close as I can get currently after many drug changes.  Did they lie?  I don't think "normal" was a all encompasing word to choose.  This is a systemic disease.  They just don't know enough about it.  Hang in there, put one foot in front of the other and just get through today.  We are here for you always!

Posted 9/8/2007 8:44 PM (GMT -6)
I don't call this a "normal" life. My life will never be what it was before my diagnosis. Even when I'm in full remission it isn't like it was before diagnosis. The modications I've had to make, all the medications I have to take. All the foods I have to stay away from. Not being able to work. Can't drink. Having my days (or months) where I don't feel good, in and out of the bathroom when I have any amount of stress. Feeling tired all the time. None of that is my "normal" life. It's about as normal as it's gonna get though, and I've accepted that. My feeling is that it's easy for them to say that it's a disease that can be managed and we can live normal lives. Since most have no idea what it feels like to have this.
Posted 9/8/2007 11:12 PM (GMT -6)
You guys are great. I re-read what I wrote. Boy do I sound half crazy. But it is what I feel some days. I thank you for your support and suggestions. I guess living for 32 years of my life without 'restrictions' has made it hard to adjust to what we all live with daily. I try my best to live my life as "normally" as possible. I push myself to try and do whatever it is I want/have to do. If there is an issue I deal with it. I let others know that I have this disease and that often it is day to day. One day I maybe able to do something, that might change tomorrow. I have found that my group of friends really are my friends because they love me, no matter what. I guess my biggest obsticle (sp) is accepting a new "normal", but even more to let go of the old "normal" it does me no good to look at the past and wish for it, or compare it to where I am today. If I can focus on what I do have and be thankful for that then life looks pretty good.

Wouldn't it be cool if the doctors could put on a "crohns suit" (kinda like those fat suits). Let them live for a day with D or C, unexplained pain in belly and joints, ect, ect. Maybe then they would understand better.....
Posted 9/8/2007 11:35 PM (GMT -6)
Letting them live a day isn't near long enough!!! a day with CD symptoms would be like a stomach bug for non-CDers, so a day alone isn't enough...a few yrs straight might change some peoples perspecitves though.

:)
Posted 9/10/2007 12:45 AM (GMT -6)
Heather, I was thinking the same thing!!!!!!Wonder how many of our GIs actually have walked in our shoes? Wouldn't it be an interseting poll? Bet they wouldn't be so quick to tell us that with medication and treatment we will live "normal" lives.
My family doctor has battled breast cancer ....and survived....so I trust her to somehow understand a little better when I tell her I feel frustrated and weary.
Glad you're accepting things a little better for now. That is what normal is for us crohnies. Acceptance one minute and anger and grieving the next....it's all part and parcel.
Love ya hon! Take care

Mary
Posted 9/10/2007 5:22 AM (GMT -6)

Marie-Claire said...
Heather, I was thinking the same thing!!!!!!Wonder how many of our GIs actually have walked in our shoes? Wouldn't it be an interseting poll? Bet they wouldn't be so quick to tell us that with medication and treatment we will live "normal" lives.
My family doctor has battled breast cancer ....and survived....so I trust her to somehow understand a little better when I tell her I feel frustrated and weary.
Glad you're accepting things a little better for now. That is what normal is for us crohnies. Acceptance one minute and anger and grieving the next....it's all part and parcel.
Love ya hon! Take care

Mary

For the last 18 years I have worked with a company that provides meals to senior feeding programs....early in my career with them I had just the kind of lesson you speak of.  We were showing some new products and packaging ideas to one of our largest customers....as we were showing a new package the customer came over to me and asked me to put out both of my hands...on one hand he wrapped my fingers to gether with rubberbands....then he place a big thick rubber glove over the other hand.  Last thing...he had me put on a pair of glasses that had some petroleum oil smeared on the lens...then he told me to open the packages.......it was a great lesson on what many of our older seniors go through and how we fail to recognize the challenges.

SO!?  What do we need to do to our Gastro's and primary Doctors to make them know what we go through?

My suggestion would be to have them drink some of the Fleet Phosphate and then make them work a full shift.....any other suggestions?

Posted 9/10/2007 7:34 AM (GMT -6)
I feel exactly like you. I was diagnosed last year, and I also have two beautiful little girls.  Many times during the day I wonder why this has happened to me, and I cry just thinking of my "normal" self before being sick.  The doctors also told me the same thing, that with the proper medication I will have a normal life again.  Well, let me tell you, I still have my bad days.  I have given it a lot of thought and I came to the conclusion that what bothers me the most is that I don't want my children to see their mom suffer.  This just breaks my heart.  And then I get angry with myself because some days I have to stay in bed rather than going out with them to have fun.  I know that this disease is not my fault, but yet, I get so ANGRY at myself...  I keep telling myself "common, you are not that sick!!!" 

Now my biggest fear is surgery.  I'm trying to avoid it, but can't help thinking that someday this will be the case....and what if something goes wrong? what will happen to my children?  So, you see, you are not alone, we all have our "dark" thoughts, and even if we accept the reality, this disease will always be in the back of our heads.

On the other hand, there are days like today, when I'm feeling so well, that I can hardly believe I have a chronic disease.... go figure....

Christina

Posted 9/10/2007 10:37 AM (GMT -6)
Thanks so much, glad to hear that I am not alone. Hope that you all are having a good day.
Athensgirl, I think that you shouldn't get angry with yourself (I know easier said than done), if anything be angry with this DD. I know how you worry about your girls. My biggest fear is that I will pass this disease on to one of them. But on the other hand I know that my disease will have positive effects on thier lives. They are more likely to be understand and compassionate towards others. Less likely to grow up self absorbed. I hope to raise some strong, independent, happy, confident, compassionate, caring girls. If this disease helps in some way,,,, well at least there is one positive.... Hope that you have many, many good days ahead!
Heather
Posted 9/10/2007 12:50 PM (GMT -6)
That has to be one of my biggist fears is to pass this on to my little girl. I know the Dr said that it is unlikely that will happen, but there is still a big fear of mine. I have also been very angry about having CD. I just spend 24 days in the hospital and miss out on taking my little girl to see the wiggles in concert. I have been very sick for about six months and have miss alot of time with my family. It very hard not to get mad.
Posted 9/10/2007 9:05 PM (GMT -6)
I totally know what you mean about feeling like your body is an alien. Sometimes I feel like my body is my enemy. Then I think about the fact that I was able to have 2 beautiful healthy kids, and I am amazed at what this messed up body could do.

I do think I lead a pretty "normal" life. I work full time, have two boys 2 and 4, and my hubby goes to college after work 2 nights a week. Some weeks are better than others and I know I always have to pace myself. I do live in fear of flaring up ultimately of course my fear is to have to have surgery and or to be disabled from work. But I guess I have to trust in the goodness of life and just do my best. If I can take care of myself and take these drugs, maybe a cure or better treatment will be found. One of my good friends has HIV, my GI is under treatment for breast cancer, so I know I am not the only one in the world with health troubles. I guess my CD is pretty mild so its good to hear from our buddies on here who have gone through even more. Keeps me thankful it could be worse.
Posted 9/10/2007 9:26 PM (GMT -6)
I totally agree & could have wrote the same as Jen.  The way I state my DD is "being at war with my body" or if I can't make it somewhere I just say "my body is not cooperating with me today".

Posted 9/10/2007 9:52 PM (GMT -6)
hspencer,
I really laughed out loud when you suggested giving our GIs a Fleet Phosphate and then make them work their shift>.....what a brilliant idea.
I can identify with your story about seniors and meals packaging. When I was a student nurse, 30 (wow, it just struck me how long ago that was) years ago....we had an excercise very much like that. A fellow student nurse had to walk us around a pool blindfolded, we had to feed each other chocolate pudding while wearing the same vaseline streaked glasses etc...
It really brought that lesson home....you don't know what another person is going through until you've walked a mile in their moccassins , as we canadians would say.
I am thankful that we have each other here at Healing Well. It helps me immensely....and many times, it makes me laugh, which is the very best medicine of all.

Mary
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