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I SURRENDER (hopefully)

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Crohn's Disease
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Posted 8/25/2007 6:31 AM (GMT -7)
Well, I went to bed last night and prayed for all of us as I do. This morning I woke up with the word surrender in my head with the knowledge that I need to do that with this disease. I'm hard headed and I know it and I want what I want when I want it. I said some things yesterday while I was crying at the doctor office that I know may not be possible no matter what medication they give me "I want my life back" was a good example. If I have this disease I may be able to be better than I am now but I may never be able to get back to my before Crohn's state. So I'm going to make all the changes to my meds they suggested including going back up on Prednisone (Man I hate to do that one) and wait a month or 2 and see if I am feeling any better. I will try tylenol for the pain and see if it will work. If not I'll call them and have them recommend something else. eyes Most of all I have come to realize that I have to go ahead with each day and try to be happy with where I am for that day. I can't let this thing beat me in the ground, I know there are people a lot worse off than I am and I should be grateful for the life I have. I can still work and many can't, I could go on and on with this but I see I'm starting to babble. Just wanted to let everyone to know for today I have had a change in attitude which I hope will last. yeah
Posted 8/25/2007 7:40 AM (GMT -7)
right on. good for you and keep at it. being ill is terribly hard, but your attitude will make it a bit easier. hugs, yp
Posted 8/25/2007 7:42 AM (GMT -7)
Hi Nana. This sure sounds familiar as I've said the same things to myself. Acceptance is one of the stages of grief... after denial and anger, etc. And it's all natural as we struggle with our different situations. I want to encourage you to hang on to hope, though. The thing that was most devastating for me was when I was first diagnosed and asked my GI what I could do to help myself - dietary modifications, lifestyle changes - she said, "You're in denial. You have a chronic disease. You will never be well. You will be on medication for the rest of your life." And then she wondered why I burst into tears. Luckily, I didn't listen to her. I'm stubborn and having hope was everything to me. I didn't want my diagnosis to define me or keep me from ever having a normal life again.

It was a struggle and it took over two years, but I was eventually able to regain a state of health. I read everything I could get my hands on. I tried different diets, kept a food journal, tried different supplements and remedies that worked for others. I kept what worked for me and discarded what didn't. I listened to my body and took care of it. I started exercising and lifting weights regularly to combat the bone thinning effects of the meds. There were some miserable, dark days, but all in all, these things that have happened to me made me stronger. They made me appreciate the little things. They made me more spiritual. And they actually helped me become more physically fit than I'd ever been before.

I hope by "surrender" you don't mean give up hope and resign yourself to a state of chronic illness. Altough we may never be "cured" or completely "normal" again, I think we can do alot to improve our quality of life and appreciate the good times, family and friends.
Posted 8/25/2007 7:48 AM (GMT -7)
Nana CC,

 

I know where you are coming from. I wrote a letter several months ago about this to my family. I talked about how I didn't want people to tell me that 'it could be worse' or 'there are always people who have it worse than you' because I don't think my live is dependant on someone else's vaule of theirs. In that, I mean, I don't think it's mutually exclusive. I don't think that just because I have a good life, someone else must have a crummy life. It's just that this is MY life. My ONE chance around. And I'm just a little sad about this hand I've drawn. And I refuse to feel guilty about that.

 

People keep telling me how strong I am. That's really not the case. I tell them that if the world could've stopped for me, I would've made it. The only reason I've got this far is because life went on. I've done many, many things and had many, many moods and motivations regarding my illnesses...none of them are indicitive of strength. Time just kept marching on...I didn't have a choice but to follow.

 

No, this isn't the same face that looked back at me two years ago. I'm a different person than what I ever dreamed of. But I still like who I am. Crohn's and all. I have Crohn's, I will always have Crohn's, and if a doc was to take that away from me...I'd probably go nuts now!! (As some of you know!)

It is a part of me. My illnesses are a constant companion in my life and are present in every meaningul relationship. No, I don't let them rule my life, but they're in it regardless if I want them there, and they need to be given attention. I've adapted my life to these illnesses...I had no choice!! But they are now a part of me, and will always be.

 

I'm not saying that I accept what I have, but I do accept who I am...and that includes the good with the bad. Just like my red hair, my long toes, my uber-pale skin, my laugh that sounds just like my sister and mother, my Irish heritage, my Cherokee heritage, my parent's daughter, Matt's fiancee who will be his wife in less than two months, my friends' friend...Crohn's, gastroparesis, arthritis, and IBS are a part of who I am.

 

It's a balance, I think. But it works for me.

 

Best to you,

M.

Posted 8/25/2007 8:53 AM (GMT -7)
After 30 years living with crohn's and fighting it every day, surrender, for me has meant surrendering to the reality of what is, rather than what i hope (I'm an optimist) or what should be. In that surrender, I have peace and, finally, some sort of remission. I always pushed through my crohn's symptoms by saying "I'm just not that sick." when I finally acknowledged that I'm sick, that's when my symptoms began to abate.

I am still sick but because I'm not pushing so hard, I'm in a lot less misery. In fact, most days I'm not in misery at all. It's a miracle -- but it took two years of counselling with a health psychologist and a lot of soul searching and very hard head work to get here. Took me 30 years to find the courage to do this. And in all that time, when I hid from my disease by ignoring, minimizing and pushing away my disease, that's when people saw me as courageous, strong and able to cope. Hah! Fooled them!

Hang in there. You are going to be just fine. You will find your balance and you really are on the right path. Yes, surrender to your reality. Honour it and yourself and everything will flow from that.
Posted 8/25/2007 9:23 AM (GMT -7)
Mandolen, geez, are in my head?!?
Posted 8/26/2007 1:08 PM (GMT -7)
Hi Nana,
I think its time you talk to your Gi Doctor about Remicade, or Humira. I am on Remicade for over 2 years
and I am inremission I go for Remicade infusion every 8 weeks. I live almost a normal life. But I don't forget
I still have Crohn's Disease and always will.

teddybear
Posted 8/26/2007 5:33 PM (GMT -7)
NANA CC read thread about Haaba syndrome
Posted 8/26/2007 6:14 PM (GMT -7)
Teddybear,
I did talk to the doctor about Humira and until they get the pictures from the Austin doc and try increasing the Imuran that went from 50 to 100mg a day they don't want to do anything else. I also have to quit smoking they said I was never going to feel better if I didn't. Of course I got home that day and my hubby had just bought me 2 cartons. No wasting $80. here so as soon as those run out the plan is to quit once and for all ( I pray). So I'm going to do all the things they suggest for next month or 2 till I go back hopefully I'll feel better and if not surely they will do something else. I've decided I have to take a day at a time or I'm going to drive myself nuts and it is a short trip at this point. Even just this weekend I feel mentally better by just not worrying about it so much. Actually went jet skiing for first time all summer. What was the worst that could happen going in the lake? It didn't happen and I enjoyed the day so much. I'm exhausted and I'm in pain but so be it I had a great day and will be going to bed soon. Hopefully I wake up feeling OK in the morning.
Thanks to everyone for all your replies as always they are greatly appreciated. I don't know what I'd do if I didn't have you all here to listen and give feed back. It helps more than you will ever know.
Posted 8/26/2007 6:35 PM (GMT -7)
Well, welcome to the Acceptance phase of the grief cycle. Once you get diagnosed with a chronic, incurable illness you find yourself going through all the grief stages just as if you lost a loved one or found out you had a terminal disease. You know, Denial, Anger, Depression, & lastly Acceptance.

Sincerely,
Matthew
Posted 8/27/2007 5:02 AM (GMT -7)
Hi Nana hope the change in meds help pred. brings me around fast and hope it does for you.So glad your feeling more positive about things it makes a big difference in helping symnptoms.Sounds like that trip out on the water did you some good it is nice to have some fun we need it we need peace and contentment too I have surrounded myself with the birds out on my doorstep and am adding too it so keep doing things that make you happy.We're here for you in your next step to better health so let us know how it is going. lol gail
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