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Hi I decided to Start a CD Journal

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Posted 11/5/2007 10:07 PM (GMT 0)
Hi I decided to start a CD journal I have my info like operation, weight, meds record,diet,night sweats,side effects, vitamins,coping .Wondering if the rest of you keep one and how you like it. I figure it will be great if I need to look up things that I might forget. I also found that it kind of feels like a good positive thing to do for me. Also if anyone else we know needs some info maybe it would be helpful down the road to someone if not at least I will be helping myself. Let me know if you start one or think it's a good idea. lol gail
Posted 11/5/2007 11:10 PM (GMT 0)
Don't forget to put that I said Hi in your journal.LOL Sounds like a good idea Gail....
Posted 11/5/2007 11:32 PM (GMT 0)
I keep all my medical records in a file with plastic sleeves and take it with me when I go to a doctor's office Sometimes I have to weed out the older ones to make room for the new. You've given me an idea though to keep one just for CD. i.e. it would be helpful to include the information sheets that come from the pharmacy for meds.
Posted 11/6/2007 11:15 AM (GMT 0)
Hi Gail, Sounds like good idea.
TBW
Posted 11/6/2007 3:09 PM (GMT 0)
i keep one online that i have been loggin everything since diagnosis. i find it helpful to just put down into words what is going on with me. i should take it one step further, keep a daily one and keep it on paper, down to every last little detail.
Posted 11/6/2007 3:18 PM (GMT 0)

That is an excellent idea because it not only helps you but it will help any doctors involved in your treatment! I started keeping a journal on my computer when I got diagnosed. I also include how my procedures went and certain things like that. I am always willing to share the journal with new crohnies so they can see they are not alone, and it ok to be scared. Maybe one of these days I will make a book out of it!!!

Posted 11/6/2007 4:07 PM (GMT 0)
Ive been keeping one for years. They come in handy when your doc asks if you have tried this med or had that test.They are good when filling out the med history for a new doctor. I have four doctors so I have to keep up. Sometimes my mind is as sharp as a marble. Its good to be able to say ,NO, dont give me that med, I had a very bad reaction to it. Also have found from trial and error what foods to eat and what not. I wish I had kept track of how much money this has cost me. Then I could look out at all those doctors playing golf and say, " Wow, look at that new set of clubs I bought ", and " He sure put them in the back of a nice new SUV." Hmmm, maybe its a good thing I did not keep track.
Posted 11/7/2007 3:10 AM (GMT 0)
yeah  Great Idea Gail!

Might I suggest a 4x5 vinyl covered spiral notepad for your pocketbook?  I carry one to record dates, time(s) of symptoms, change of meds, etc.  I get so busy sometimes I will write something in mine and will look back at my entry later and realize a new or different pattern.  Also, it's always handy at the doctor.

I also have begun my own personal legacy journal.  This is something I do in down time when I don't feel like doing anything else because of fatigue/pain, etc.  I pull out a picture from a photo album and try to relate an experience, sight, sound, poem, song that relates to that specific picture.  It helps me through the rough times and gives my descendants who will never know me an inside view of my life and yes, I include CD experiences as well.

I told my husband, one day I will write an Erma Bombeck style book between the Murphy's Law side of my life/family and the CD combined!  I'm sure it would be on the top of the booklists!

Posted 11/7/2007 2:55 PM (GMT 0)
Hi Thanks for the replies and ideas. There certainly could be more reading material out there about IBD .Most of us would probably love to read some stories about people's lives and how they managed. Each of us has there own unique story to tell. I think you should get started right away Broomhilda.It is great to learn a little about my friends here and it makes our lives more complete. One thing I certainly will be telling is about my help here and how it has made me stronger at times and better able to cope. There just isn't anywhere else to get the help and caring that you all give. lol gail
Posted 11/7/2007 3:09 PM (GMT 0)
I started one also in the beginning
Then everyone said I should write a book, so I started that too.....But, I find myself so caught up in all of this that I hardly write anymore.
It seems like my entire days are filled with nothing but doctors, tests, needles, errggg all of it, That I havn't written in it since I found out I had to have chemo.
I am just so tierd of myself that I am sick of listening to myself talk....let alone write all this crap down.
I am literally sick of myself.....and everything that I am doing to the people that love me.
I watch the anguish and worry in my mom's face everytime she has to go with me to these dr., appt., I look at my husband sometimes, and I wonder how he can even come home to me.
I am always tierd errrgg I am so sick of that word.
I just want to be energetic, I want to be able to get up one day and say...I am going to the gym and thne to meet the girls for lunch...and maybe cocktails and dinner with my husband....But that hasn't happened in years, and it doesnt look as though it is going to happen again anytime soon..
I get so tierd of this I can't seem to write about it in a journal or the book anymore.
AND GOD knows tht there are worse out there then me, and I should stop feeling sorry for myself (today is a pit party day I suppose) I have to remind myself of the little ones that are facing cancer and wonder what their poor little minds are thinking. That is what usually what gets me out of this funk.
TOday I go for the Ct scans, and I am so worried that they are going to find more cancer, my mom is 65 years old, and has been going through these health issues with me all my life..she looks so tierd. I feel like I am making her tierd, like if this stress, I am putting on her doesnt subside it is going to kill her, I am so sick of myself.
Posted 11/7/2007 6:35 PM (GMT 0)
miraclesivseen - just wanted to send positive thoughts and hugs your way. your post made me feel so sad :( i wish you the best today, let us know how you do! and don't give up on yourself!

*hugs*
Posted 11/7/2007 6:54 PM (GMT 0)
Hi Miraclesiveen I hope you have a good CT report and I know from reading your post you have been threw alot. When it comes to our loved ones I know I have had some concerns for them to.I know a person can get tired of all that goes on in our lives but maybe getting out with you has helped your Mom. I find time for a coffee or a little treat that makes the trip more pleasant for me. You will soon be recuperated from your surgery and I know you have more things to get done and your wonderful strength has helped us and we wouldn't know you if you didn't post us. So please don't get tired of yourself because you are part of our lives too and we need to know what goes on with others .Friends mean alot to us. lol gail
Posted 11/8/2007 4:45 AM (GMT 0)
Yes....all of you have become my dearest friends. I have no idea what i would do withot all of you.
You all help me so much, I know hat I can always come here to cry, vent , laugh, all of it.
You know what I am going through for you all have been here....and you know where I am going.
It's not easy to explain Crohns to those who don't suffer with it...they can never know.
I am very fortunate to have so many caring people in my life.
Friday meet with the oncologist to discuss today's tests...I also had a muga scan....I am really wondering how that turns out.
I don't know if it is becasue of all the stress I have been going through or the pain from the surgeries...but today my BP was 186/96..they wanted me to go see another doc., right away, but since I am seeing the oncologist on Friday, I am waiting.
I think it is just from stress...my BP is usally low 100/70
I will know more on Friday.
I love all of you so much, for always being here for me.
GOD BLESS ALL OF YOU
xoxoxoxoxoxoxox
Posted 11/8/2007 10:49 AM (GMT 0)
Hi Miraclesiveen Never heard of a muga scan. I had high blood pressure before and it made me feel so weird, my thinking was off but it was caused by birth contol pills. How is your incision healing and is the pain getting less now? Hang in there and keep in touch .lol gail
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