INSOMNIACS place to talk in the wee hours
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Woke up to no migraine and lots of kisses from Princess
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Rose- the wild west train hold up ride sounds awesome! I would go with you if I was there! Like being in a real live western!
Mommy- good to hear the headache is gone.
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She LOVES you Mom2!
Rosie.... very good post... and informational....Sometimes we just have to figure it out for ourselves...ANYthing we take, has an effect on other parts... Sometimes good, but sometimes meds just start a chain-reaction ... like a run-away train.... I found that out when I was trying to help our Lacee with her Hot Spots, and used this liquid medicine on her for maybe 2 years! I would rub it on her little spots, and it helped HER, but I was allergic to it... So many different Doctors, and I would get meds FOR the rash and peeling, but no-one could figure out what was CAUSING this.
And then, one day I thought "Maybe there is something in this that is causing this burning, rash & peeling on my hands... I looked up all the ingredients.. One of them sounded ominous! And I researched it further & found "May cause an allergic reaction, hives, swelling...." So I started wearing rubber gloves.... THE SAME INGREDIENT IS IN "RUBBER" GLOVES!
And besides THAT, that medicine would be all OVER her fur when I pet her.... I had to quit using that medicine altogether. So it was up to ME to figure out what was wrong.....
Same thing with my ears! One morning I woke up and couldn't HEAR!.... Left ear was worse.... Right ear was not as bad...... Man, I tried everything... First Doc said "It must be allergies"... So we did all THAT stuff for a month.... nothing.... Then the Audiologist said Profound Hearing Loss... and all I could do was get hearing aids.
I didn't know what I DID! One day I was fine... and overnight I lost most of my hearing! My Husband kept saying, it MUST be something you are taking. And all I was taking was Tamoxifen. Then I researched THAT, and the side effects... The labels all said that Side Effects included possible Stroke, Cataracts... blah-blah, but you NEVER think it will happen to you.
And I found PAGES of women who have lost their hearing due to a stroke near the 8th cranial nerve in the base of the brain-stem... causing hearing loss. Doesn't happen all the time... only to a certain few, with a certain gene, that this happens to.
But oh well... At least I can wear hearing aids, and appear somewhat normal.... shut-up Cammi! Needless to say I quit Tamoxifen, but if there would have been a "test" for this gene, I wouldn't have been prescribed Tamoxifen. And I was too afraid to try any of the others... So my Doctors couldn't help me with that problem.... I had to figure it out for myself... And there aren't enough women who this has happened to... And Tamoxifen has probably helped a lot more women than hurt them....
I'm just such a bearer of good news this morning.... ! Ha! I have to get another cup of coffee!
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Chevy- my BFF thought she had a stroke last year as she was loosing hearing in one ear. She went through all kinds of tests/a brain MRI. She found out in the end it was Menieres disease which is highly treatable and she is doing better. So many reasons for hearing changes.
Speaking of Cami per your post, where the heck is she?
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Phyllis I love the pic. You look amazing !
So many people out doing wonderful things today in this beautiful weather you go girls ! Live it up !
Yesterday and today I have been miserable. Lots of back psin and big D. Very nauseated. Ugh. Ready to get back to life. I won't back down. We are gonna find the solution and start with the thyroid. One thing is for sure ... I slways get nac up !!!!
Hootie hoo to sll
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Patty- sorry you are not feeling well again. Can you take anything for the big D? I love the "hootie hoo" thing too.......
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Came back from an early Earth Day clean-up in my neighborhood and came down with a headache. Took a nap and its gone.
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Mommy-good for you on the Earth Day clean up. We have one here next Saturday and I participate most every year and will do so this year!
Take care of the headaches. If they persist, do get that checked out.
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Hi guys! Cammi is somewhere! Between her teeth, and tests, and who knows what ELSE is wrong with her, she just doesn't feel like posting I guess. I just want her to come back.....
Jazzy, did her hearing come back? Mine never did.... It just happened one night.... I went to bed and could hear..... woke up and could barely hear out of my left ear.... The right was a little better.... but it never came back.... Menieres disease IS treatable....!
At least I can wear hearing aids.... It's not ever the same as "normal" hearing, but better than it was.... It COULD have been worse....
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Ms Graham, you are screwed up too? Glad I am not alone. You look marvelous. I love your beautiful eyes and dimples. Anyway, could I borrow your artist friend? I need a major make over myself.
Ms Spookie, you are so naughty.
Ms Sass, how did they put the rainbow in the wine glass? So delicate. I read your post on the new thread...I am still digesting it.
Ms Smaarty, I wonder if it has to do anything with your gallbladder. I remember from awhile back you lost quite a bit of weight right? Hopefully, it is nothing that can't be fixed.
Susan, I saw that you had 40 nodes removed and now after 14 years you developed lymphedema? I guess time is not a good indicator of whether or not you will get lymphedema. I have not had lymphedema yet, but had 2 bouts of cording. It was painful and uncomfortable. Are you seeing a PT who is specializing in lymphedema?
Ms Blondie, I hope the warm air will not bother your breathing.
Rose, the train ride sounds fun. Hope the kids had fun.
Ms Chevy, I am sorry about the hearing loss caused by Tamoxifen. I have ringing in my ears after the recent surgery I had in January. I am ok when there is background noise, but when it is quiet, it's a different story.
Dear Patty, hope you get some energy soon so you can go out and get some sun. Have you had your vitamin D level checked?
Mag and Beachbum- hoping you have energy to get some laundry done today.
Mommy, another headache? Sorry. Is it because you are nervous about your surgery next week?
I hope you all find Cami.
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I forgot to mention...are you sure you gals are insomniacs? I don't have problem with insomnia, but I find it ironic that the other day I was hooooting away and no one was around. I had to stop because I did not want to wake anyone up!
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Think its because I'm getting really stressed out this week with everything but not the surgery
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Chevy- she told me very recently her hearing is coming back. It just took them awhile to figure out what was going on. She was very dizzy for a long time as well, and it really scared her. She came through a very tough period of elder care stuff and then a messy estate settlement and the whole thing just threw her into more health issues.
She sounds much better now, but is learning to take better care of herself. We often talk about how we are putting ourselves first these days. We have to!
Mommy- why are you stressed out?
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Just too much crap going on. I just feel like sitting in my favorite chair and having a good cry.
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Loveyoflife.....Love the owl. Wish they're was room for it in the topic box. The meerkat pic came when we were in a time of trouble. I forget what the trouble was, but it was such a good image of us holding onto each other. I'm fairly sure Chevy posted it the first time. The bluebird was added when Kristine was in trouble with a brain tumor. Her screen name was initially Bluebird, but she changed it to FierceBluebird when the brain tumor was dx'd. She since has passed. The meerkats and bluebird will never change. The other owl, they're is no attachment too, except I wrote the phrase "we can ride it out".
I started the thread when I was truly an insomniac. I chose to make it my home thread when I was being stalked. I invited people to come. They came. Others have come since
A thread once created, the topic name can't change, but the message within the topic box can be edited by the thread originator. It was an insomniacs thread, but threads evolve. We post at all hours. In the early days I used to talk to myself, if no one was around. It was just a nice place to be. Someone would come along eventually. I remember one night Nancynow and I were both yakking into the wee hours and a newbie posts, she is Spanish speaking and writing. limited English. Nancy and I were so tired. It was omd we can't sign out, she needs help. Out of that contact, I wrote the Mods about having a Spanish access. They developed the Spanish arm of BCO. Cool.
There is a tendency here to not talk of serious issues for along time. To keep it lite and bright. To have a place to come to that's not talking BC. But we are family. A chosen family. We need to take care of each other in the good times and the bad. Can't be a good Meerkat if we aren't looking out and around. L&H&P's
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Mommy what up?0 -
Hey all--I've been just lurking for a while.
Sassy--love your words about this thread. I gravitated here the first day I made my BCO account. The gals here are great.
Lover--I haven't lurked in the night lately because my borrowed lap-top had to be taken back to its owner, but I'm a true insomniac. Maybe we'll bump into one another in the night some time.
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peek-a-boo
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MommieZZ-----niceMostlymom ---I certainly had to look intensely ---owls are such good blenders.
Folks the new thread needs some help. The concept is good, but will die without posters. It isn't a fun topic. It's what I call a technical thread versus a social thread. We all have been upset about Blondie being denied her meds. Now we know why. She was labeled by the system by the word DENIAL. It's a moment that we may cause change. Post.
https://community.breastcancer.org/forum/110/topic/830496?page=1#post_4366438
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Sass, I was just joking, but thank you for beautiful story behind the pictures. That is a wonderful way to remember a sister. Excuse me for my ignorance, but what is L&H&P's? Love, hug, and peace?
Cute peek-a-boo owl Mostlymom.
Mommiez, sometimes I have no concept of time and tend to lurk at night while waiting for my 11 yr old to fall asleep. Every so often she has this fear of being in the room by herself and can't fall asleep unless someone is in the room with her...silly child.
What happened to Blondie?
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Blondie Yoo hoo tell your story sweetie about how you were denied your pain meds. But pleas, put it on the new thread to. We need to get some fire under the sisters. Talk about Pinktober Revolution. THIS IS IT. Forklift, now we know why you were denied. Let's take off at the gonads.
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hi, I am so behind
but must say I was lacking Vd before bc, and after I finished chemo a lady at my mo Dr. Told me I should take 5000 a day so I read about it on Google lol I did the 5000 a day for a good 6 months then now I just started again. I wish to know more about it. How much is good to take? Hum thanks sass you always help so much with all your research Party hope you get well soon.
Love you all
Its April are you ladies meeting soon.?
I met a lady a few weeks ago and it was so good she is from this site. So nice to get together with people that can relate to all we have been through
Good night
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PattyP- sorry you are having some bad days.
Mommyof2 - sometimes a good cry really helps - hang in there!
Sas - what a beautiful description of this thread - very nice.
Loveroflife - I was also wondering what L&H&P's meant - I think you made a good guess! I remember when my DD1 was afraid a lot at night...she was afraid of robbers! Seemed like it took such a long time for her to get over that. So nice that you are able to help your DD feel better by being with her!
Had the pleasure of watching my DD2 perform in her play four times since Thursday. Now it's over and she is looking forward to having some more free time since she has been so busy with practices. Next play is in May!
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Hi Enerva, how much vitamin D you need depends on your blood level. Normal level is between 20-80. My doc wants my level to be around 40. I am supposed to be on 4000iu for a few months then come in for blood test.
Mommy, I agree with Mel about a good cry.
Mel, my girls keep me busy too. It's nice to have down time
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My Vitamin D was also low before I was diagnosed - I have Celiac and think it was due to that and not absorbing nutrients properly. Seems to be doing better these days. As Loveroflife said, how much you take does depend on your blood level.
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Hey Mel, I was editing my previous post to address you and then saw the one right above this one. Were you one of the ladies who had your gallbladder removed too?
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Yes! I had mine out in 2003. It didn't have stones, but did not work.
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Enerva- I take 5000 iu daily and 1500 of calcium. I was always on the low side, and finally just upped it and my blood work in March had it at 50 which is the best it has ever been. Because I am on the AIs, have bone loss, and doing the Prolia shots to help my bones, my docs want me on top of my Vit D and CA in take.
Mommy- maybe you just need to let it out. All this stuff accrues for us and sometimes it is just hard and we need to let it all out with a good cry.
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Had mine out in 2010. No stones. Didn't work for me either. Finally, they dx me with The Famous IBS
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