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Posted 10/23/2005 7:56 AM (GMT 0)

Hey guys, as you can tell by the time, i am an insomniac again this am. What's up with this? I don't rest during the day, I can't rest during the night, w/o having garish nightmares skull  , or waking up in a cold sweat and being in severe pain. I have meds for sleep and pain, but, don't seem to be helping. My body seems to be craving something I am not getting. Out of whack again. So here I sit starring at this stupid pc like it is going to hypnotize me or talk to me one, i guess. I am 1 day being a wk out of my first chemo, could this have this effect on me this soon? I get so mad, cause like I said yes in one of my post, I have no idea what is going on. My hormones feel like they are all off the charts, and I went thru meno in '93. I know stress plays an important factor in all this, but, does it have to be so freaking bad? I have meds for that as well. I could start my own pharmacy. I have been reading "Jo-Ann's clutter", and you, my bosom buddy, are a real card. When I read your post, i can always smile. There is a bright side to all this i guess. Just keep some "clutter" lying around for me and all of us. I think all like to read them. Well enough whining from me. Hope all of you have a good day!;-) 

Posted 10/23/2005 3:06 PM (GMT 0)
Carol,
Whine all you want it sucks when this happens because we really need the sleep. They told me that it was the Decadron causing the problem. It would let up for me before the next treatment. You proably don't want to hear that this to will pass. I'm sorry you are having a bad time. Keeping you in my prayers.
Donna
Posted 10/23/2005 4:41 PM (GMT 0)
Carol

I had the same problems with sleep too. I still have the most amazing dreams, some scary others just off the chart of wierdness, I have dreamed of things I have never even thought about. And please dont say you are whining all you are doing is releasing the things that bother you. When I first found this site I felt like that was all I did but everyone assured me that it was okay to vent. I love all of these wonderful women I sometimes wonder what I would have done if not for this site. So write and vent all you want we are here for you.
Posted 10/23/2005 4:56 PM (GMT 0)
Carol, "clutter" was started to bring some laughter to the board. Sometimes the board starts being too sad and sometimes I need to let loose.

I remember my first clutter post. I had been cleaning out my closet and my late husband asked me what I was doing. He pointed out that I would probably never work again and I wasn't going to need all those suits. I told him that "I was getting rid of all of the double-breasted ones and keeping only the single-breasted ones".

I am sorry to hear that you are having problems trying to sleep. I was the same way when I was on chemo. I learned to just fall asleep when I could, day or night. As others have said, it will pass.

As for the dreams and/or nightmares, I am now 58 and the dreams I had at 48 and 49 will stay with me forever. How horrible they were and I imagine they are horrible for you. What I did find was that they let me realize what my fears were.

The reason we say that we are open 24/7 is because of what you are going through. Sometimes there are others that are like you. I can remember having a post-fest that went on into the early hours with another breast friend.

We also use our board for life in general. I know that I have used the board instead of shooting a couple of people who need it.

Please, use this board whenever you need. There's a lot of love and understanding here.

Hugs, Jo-Ann
Posted 10/24/2005 12:57 AM (GMT 0)
Oh Carol....it is so frustrating to not sleep.....seems it should be so natural and easy but not for many of us. I learned of the wonders of ambien during chemo, and have a few pills in the medicine cabinet even today....over 5 years later. Have you tried it? Lunesta is the newest one, and they say it is ok for long term use. Chemo "messes with the sleep center of the brain" is what one onc told me....besides all of the other drugs we take (steroids, etc). It is a wonder that we don't come out with a pharmacy degree!

As for clutter....many of us used to post on another forum....and we attracted some random people over time...I recall some brew-ha-ha developed over nothing, and we were accused of writing nothing but clutter....and since then, we often preface our non breast cancer-related posts with a "Clutter alert"...so that those who wish to stick to the topic at hand won't have to waste their time reading "clutter."

Frankly, we love our clutter, it is part of what makes us a great group of women!
L&H,
Lori
Posted 10/24/2005 8:21 AM (GMT 0)

I just love you guys. I know I am new to this, but, if i didn't have this outlet at this time, let me tell you it would be bad. I know I have always just read the Crohns board, cause after 30 yrs with that crap, I have nothing to add, not much I can use, and i don't mean to sound like a know it all.  But, here I have my own little corner, where you guys have made me feel I can say anything i want and it is ok. Since B/C is a very new thing for me,  just found out in Sept. 05,   it is trying to take control of everything in my life. Especially my time, w/ doc app, chemo, more doc app, and the list goes on. And with the dreams, they don't even make sense. Except to say, I may have hit my port line, and in the "dream", I have body parts lying every where and am trying to stick my head back on. LOL. I'm sorry about that, but, after I typed it, I saw how ridiculous it really sounds and looks. But, that is some of the crap I dream. I know the steroids are messing with me, cause that feeling is one I have had since Crohns started in '76. Haven't had to be on steroids since my last hosp stay for the stuff, in sept 05 either. Now the decadron wants to mess me up, and it eases up when???? Just when I get ready to have another round of them. Oh Goody. Looking forward to that. I know it will pass, and I have to keep my positive position in all this. It seems to be 24/7 is going to be the norm for me for a while, so keep me in your thoughts and prayers, and clutter. tongue  I'm just glad you are here. May God Bless you all,

Posted 10/25/2005 5:02 PM (GMT 0)
Carol

We love you to and we are glad that you found us. I feel the same as you do about being able to come here and express anything and be understood. I felt so lost when I was diagnosed I surfed the web trying to get info and then I found this site and I felt at home. I also understand about the dreams I have had some duzzies I have had nightmares and just plain wierd ones. I have woke up and actually felt like it happened because it was so real. Are you working right now? if so the insomnia is not good. I have dealt with insomnia for as long as I can remember but Im also a very tightly wound person. I am not working again. I got sick and had to miss 2 days and my boss put me back on long term disability again. He worries about me catching something at work. I have chemo today, my first Taxol I hope it is easier than AC.

I wish you all the best and an easy time through chemo.
Posted 10/26/2005 4:28 PM (GMT 0)
Carol...I was just complaining this morning about my strange sleep habits. I could sleep all day and be wide
awake all night. It has been that way for quite a while now. I wonder if I will ever be "normal" again..LOL
I have been known to doze aff at work..so glad they understand.

Our "clutter" is what makes this board so great. Jo-Ann is the queen..no one can tell a story
like she can...she can always put a smile on my face with one of her stories.

Hugs

Cathi
Posted 10/27/2005 9:59 AM (GMT 0)

eyes  Hey Bernadette, I am still in the insomnia mode. It seems to be calming down some, but, it is just before another treatment. I have been disabled w/Crohn's since'76. The way that stuff does me I couldn't work if I had to. When diagnosed in '76, I had several surg, had to have the ileostomy bag, and was very sick for a long time afterward. I finally decided I wanted to go back to work, when I thought I was well enough. I worked about ten more years, then the Crohns took over, literally. I went for my SSD, was denied several times, but, kept fighting it, so it was finally awarded to me in '89. It's a good thing, cause with it, and now B/C, its all I can do to keep going. So I do try to rest during the day, but, i can only manage maybe 20-30-mins.

confused  I'm telling you guys, that first chemo treatment has knocked me for a loop. My skin is so sensitive, it hurts to touch it. The drainage from the Crohns went from bad to worse yesterday. Now my back is killing me, actually it always does, but, I am having cramps and staying bent over from the back pain. I have pain meds, all that stuff. I am going to address this prob with my onc and see what he has to say. Also have sores in my mouth and on my tongue. Man that is painful. Any sugg on some of this. Oh yeah, I found some Mrs. Grass soup, but it was in a big bag, and you add 8 cups of water to it. Is this what you guys were talking about? Or does it come in the little cups like Campbell's, to sip on. This had veggies and big chunks of chicken in it too. So I didn't get it.

I start on Taxol after I finish with the a/c also. I still have 3 more treatments of it. I hope it is easier on my system as well. Since the a/c is tearing me up. I pray it is easier for you too. We need all the easy we can get.

Cathi, I do love to read Jo-Anns "clutter", as when I am feelin' down, her stories can manage to bring a smile and warm the heart. Everyone here has been very helpful to me, since I am lost when it comes to B/C, and some one usually gives me something I can use or at least laugh about. Love and Prayers to all,

Posted 10/27/2005 2:16 PM (GMT 0)
Carol

Call your onc, there is a mouthwash type med that they can prescribe for the mouth sores that will help ....


I had the sensitive skin also. Mine was so bad that it bled at times, so keep it REALLY moisturized
all the time.

Hope you feel better real soon.

Cathi

Posted 10/27/2005 4:02 PM (GMT 0)
Carol, I cannot stress enough how you should follow Cathi's advice and call the onc to get something for the mouth sores. While I always felt nauseous, the mouth sores were the very worst. There are meds for just about every side effect and I would encourage you to use them.

Hugs, Jo-Ann
Posted 10/27/2005 7:49 PM (GMT 0)
I don't know if this really works or not, but I CONSTANTLY eat ice while I'm given my A/C, (there's an ice machine in the chemo suite), and fortunately I havent had any mouth sores (knock on wood!!). I read that if you eat ice, it numbs the area, and the chemo doesnt travel to the mouth as well. It may just be poppycock but it seems to work for me.
I hope that you find something which works for you!
My thoughts are with you,

Chantry
Posted 10/27/2005 8:12 PM (GMT 0)
Carol,
I'm sorry you still feel so rotten. I found the Taxol to be so much easier. Joint pain but I felt so much better that I could deal with the pain. I did a lot of soaking in a very hot tub. I pray it will be easier for you. Tell your onc. how you are feeling they will be able to find something that can help. I'm sorry that you are having to deal with your crohns as if the bc isn't enough on your plate. I wish I could say something that would help.
I almost forgot the Mrs. Grass soup is in a blue box, there are two hooked together and you break them apart and cook just one. All that is in it is noodles and broth.
Try and get rest when you can.
Keeping you in my prayers
Donna
Posted 10/27/2005 9:53 PM (GMT 0)
Carol

Im sorry about the insomnia and the mouth sores. I like Chantys idea about the ice I will have to try that too. I have had mouth sores too and everytime I would smile it would crack open on the sides of my mouth. They are gone now thank goodness.

I have to tell you my first chemo and shot of Neulasta knocked me for a loop too. I was completly down for a week. I had severe back pains and complete body aches, nausea and headaches. I could not function at all. I didnt call my onc because I thought it was normal after chemo to be so sick. Come to find out I had a reaction to the Taxotere. So dont be afraid to call and tell them the problems you are having.

The Mrs Grass soup comes in a two pack blue box. It has just noodles no chicken or veggies, it really is the best I hope you can find it.

I went in on Tuesday for my first chemo of Taxol and my blood counts were too low for chemo so I had another shot of Neulasta and told to come back next week. I have had back spasms all day yesterday and today from the shot but it does the trick. So I have nothing to report on the Taxol yet. I also have problems with my skin, right now I have a rash on both arms, my back and face. My Dr says it is from the chemo and to put hydrocortosyn creme on it so far it is not helping.

I have another dillema I am dealing with. I had a temp and a sore throat last week so I missed 2 days of work and my boss put me back on long term disability. I have had it with the merri go round of working and then being told I could not work so I contacted the EEOC (equal employment opportunity council) and the ADA (american disability act) and they both say I have every right to work. I called my zone manager to tell him what my boss had done and at first he sided with me until he talked to my boss and then called me back to say that he felt it would be better for me to stay home and get well too. I then informed him that I had spoke with an attorney at the EEOC and he said he would look into it some more and call me back. I dont know if you remember all of this happening around a month ago but here we go again. All I want to do is work. This disease is depressing enough without sitting around all day worrying about it not to mention the fact that on long term disability I am making $1,100 less a month and to be honest I cant afford to make that much less. Im sorry to go on and on about this but it is driving me crazy. My boss thinks he is helping me by keeping me away from all of the germs but I could catch something going to the Drs office. He has said that he wants me to be able to work full time or nothing and that he wants to hire a part timer to help while Im gone. The EEOC siad that would not be smart because Im able to work and if he hires someone else that I will have a very good case. The bad thing is I dont want to sue I just want to work. Anyway any and all comments appreciated!
Posted 10/28/2005 1:44 PM (GMT 0)
Carol

I just had to write to keep you updaqted on my work dillema. I got a call back from the zone manager (after my threat of a lawsuit) and he said everything is fine now you can go back to work as soon as you wold like!!!!! Its amazing how fast the mention of a lawsuit makes them see things your way. So Im up getting ready to go in, my boss said he wants to sit down with me when I get there. I can tell you they had better not say anything that I dont like because I have had it and Im sick of the yo-yo. Im happy to be going back though I miss my coworkers and my customers. How did you sleep last night??
Posted 10/29/2005 8:26 AM (GMT 0)
Bernadette, I am glad you are getting to go back to work. That's the way I was as long as I was able. However I had the same prob with being out sick, and knew I had to do something. This was later on down the line when the crohns got so bad though. I always wanted to stay as active as i could. The yo-yo crap would have to stop, and I think you did the right thing by the lawsuit mention. They do tend to get their butts in gear when they realize you aren't kidding. Oh yeah, I am still not sleeping,  Hope the best for you,
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