INSOMNIACS place to talk in the wee hours
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Thanks guys. Now that I know what that is, I won't be freaking out that something is wrong.
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DUTCHY,you should be with me after the second glass of wine - motor mouth versus second toke if mj. Quiet as a mouse
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I don't do either but I can spew forth a lot of nervous chatter.
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Spookie..... this is for you, dear one.....
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That cartoon is wonderful! What a hoot.
Sassy- I will muster up the gumption to "ask" for labs.... got to tell you that my track record for getting anyone with an MD after their name to run anything is nearly zero. I know what they should run. I get the absolute BARE MINIMUM of anything. Half assed, or not at all. They know I used to be a nurse and if I dare request anything - the eyebrows go up, the silence echos and any answers I want about things disappear. This happens NO MATTER WHO I see. Onc.PCP cardiologist any MD. I have learned just to accept what ever I do get offered is all they will do, so shush. I was actually surprised PCP ran the UA. I know the PCP did a C&S with the last UA and no idea if they ran one this time. I just accept what I get. Don't bother asking for more, so I don't ask.
My oncologist refused to do tumor markers. I had to ask for them. He would do a CBC and a CMP and that's it. I asked and he said that was enough. I asked about the A1C when I took afinitor, shot down. No. Then I quit taking the afinitor against his advice because of edema and heart effects. So out of the blue he does the markers for ovarian cancer and they come back at 100. No comment, his assistant just handed me my labs. No tests, see you in 6 weeks. Makes me mad. Like fine- see if I let you take any labs then. If I get nothing, then you can get nothing. I can live with uncertainty I have had to for 8 years!! I am a champ at living with zero information, side effects, infections and weird unexplained crap. Or the flip side explanations that are so insane that you throw in the towel and refuse explanations so perverse. I should stop bitching because it does me no good. Let nature run its course, except for treating pain and UTI's.
I wish my body had a built in "Turkey Done Button" so if the UTI comes back we get a little "check engine light" That would be nice and convenient.
Got some great pictures of egrets this morning! Lovely graceful birds. Stayed in the 60s all day!
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I was in the clinic, have chronic broncitis
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She is doing better and loved all the nurses there.
Thanks for caring, I don't like predisone I grain weight
on it
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They also told me to call my sleep to about not using my
sleep machine cause it blows everything to my lungs. plus
wake up. Life is good
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till I see my other Dr a week
so I will gain weight
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I will awake a lot, How are You doing my friend
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That will be wonderful Thankgiving , I have not had family
( My 2 brother) since my parents passed, So I go to Dennys
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I would love that, I pray it not raining hard. Are you
having any big Thankgiving?
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That would be wonderful I hope You really enjoy and I will think
of Your family and know Thanksgiving is still there. So may you
fun making those pies and using the extra for cinnamon crust. Yum
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Rose, We have known each other for a short time-the doc caring for you, is shit. How can you change docs? All your questions are valid, your docs answers are substandard. Girl--call the insurance company and ask for a nurse oncology expert or a Critical Care Nurse Case Manager. ...... Tell them you are afraid your care is wrong and that you will die b/c your docs right now are not listening to you..............Reason this works----the insurance company is paying the bill. It's in their interest to keep the cost of your care low. If you as a patient define a lack of care ----the outcomes are HUGE. I love insurance nurse managers. They shake up those docs.
Whose ever eyebrows go up--fire them..................lol My doc's have to be sooooo expert because they know I'm coming
If you say to a doc the HBA1c goes up when affintor is taken and the refuse to run it, UNLESS they can give you a Evidence Based Reason for not running it--------what can I say---they ain't got a reason.
Rose you need new doc, hope you are in a situation that can happen. It's your life.
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You too, See You later, Sleep well
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Goodnight everyone pleasant dreams
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Trying to get to sleep- have to get up early and finish packing etc before take off! but i am just too excited!
Tang- take a break, just pop in every couple of weeks to say hi so we dont worry so much. ((hugs))
Chevy- that is the kind of man i would LOOOOVE to run into on a hike. wheew! (is it warm in here?)
Foots- i understand the steroid issue all too much right now- haven't gained weight- just 2 inches around my waist this week- JUST in time for my vacation and friends wedding. (why did i agree to take them? they never help!) HOpe you are feeling better soon
Teka- how you are feeling good. Glad to see you here more often
Sas- wish you could upload all the info in your brain to a computer that we could all access at will! you have to be one of the smartest women out there! Thank you for always sharing.
Meow- your kitties are gorgeous!
MammaRay- hope you are well!
Wanted to drop this here- interesting if it can really work and help. I feel like every day i read something promising, and I want so badly to believe that we are really making progress in fighting cancer. I guess, ask your doctors about everything that you see that may have potential! That is what I will be doing, making them stretch past that "standard" of care they are used to.
http://medicalxpress.com/news/2014-11-vaccine-tumor-blood-vessels-suppress.html
this will be me in 24 hours:
LOVE YOU ALL!
Will post links to photo drops every couple of days if anyone is interested
xoxoxox- jeni
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So what IS this? You two talkin' all night about WHAT? I'm going to have to shut your door, if you two can't keep quiet and go to sleep! Bronchitis? That stuff makes you sicker than a dog.... It is nothing to fool with....
You CAN'T..... repeat CAN'T get pver this by yourself.... barely even with a DOC in the picture! You need anti-biotics and yes, Prednisone to even make a dent. I had it so bad one time years ago, that I thought I had to get better before I could die. Those "feelings" came in waves. .... It is like your whole body is turning into jelly, and it comes out of everywhere! So take your medicine.... and call me in the morning.
Teka, you little dickens! You know I love those um..... pictures.... those reminders of time past, when I didn't know what to DO with one if I had him..... And if anyone complains, we will of course ignore..... Hah!
Dahling little owl guy JWOW! And morning MamaRay and Meow! And morning even to those two who kept us UP all night! They won't be up until maybe NOON!
By the way, is there any way to make this print LARGER? is it just ME, or did this print take a dive?
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By the way.... I .... um..... have to take a bath now0 -
- The question was... "Do women have a Firemen fantasy:"
- I would say that's a "yes"....
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Got wonderful news from my niece who has put herself on a self imposed kick to live a healthier life because of medical issues, she is only 8 pounds from her goal she had set for the new year. Brought tears to my eyes! Told her I was really proud of her and to keep going!
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That is a great accomplishment Mom2! Yay for HER!
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CHEVY snowing at your house yet?
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Rose - I completely agree with Sassy. Sometimes I don't say as much to someone I know is a medical professional because I know we leave a lot off here that we know but just don't say. I'd fire my MO in an instant if I thought I was getting less than standard care. Personality wise he is not the best for darned sure but prof. wise he has done what I expect. I see you're in Oregon. Know there are more rural parts. I do believe there is a NW ladies thread on here. Might be good place to start. You just never know what's going on in others' lives. He may have a sh***y personal life and it comes out in his worklife. Been there done that with a psychiatrist I worked for. Geesh. Agree with the insurance nurse manager esp. if your bills with them are rising. WINK Wink. In their best interest to keep you healthier. I still don't know why BCBS pursued me with one for a while. My BC was very straightforward clinically. Hope you have an alternative or 2. Mine ALL know I'm a nurse but again they are the professional. Let the know straightaway that though I have an opinion I've never been an ortho or CA nurse. I've had trouble getting basics run too. That list Sassy gave - hah. I get a CBC, CMP and tumor markers. PCP takes what I get from MO and then runs nothing else. Last year he finally consented to run chol, thyroid but not all the ones Sassy listed.
But again the A1C - wouldn't that be a PCP question. Or does with chemo does that punt back to the MO in that case? That's a sticky wicket question. I can see with chol and a longterm drug like AI. That's prob. PCP unless one has a very compliant MO. Which mine is not.
Hello MammaRay. Long time no see. How is life treating you these days?
TangARooni - I take it by spells to. I'll leave this thread to read last because of the volume and then find I'm days behind. Do what you need to do for you and your family. A one liner once in a while to tell us your hanging in. Sassy's right - will slow down a lot during the holidays on here. Did you see any goats at the county fair?
JWoo - Coming back home with a proper British accent? Can't remember if you told us what you're visiting across the pond.
Dutchy - I missed something. CT for what?
Mom2 - Yay for your niece!
Chevy - to get larger print. Hold control button down and hit the plus sign on top row. Too big do same thing with minus sign. I don't think print is smaller but it does seem lighter somehow.
Well - DD has to work again today so not coming out. Maybe next weekend. Been cleaning like a fool but found this out yest. afternoon which shut some down. The magic cleaning fairy has not found my house yet.
Spookie - not snowing here but we are getting a freeze later in the week. Have to prep houseplants to move in. My toes for my pedi on Tues. afternoon may turn blue from the cold not polish.
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good afternoon all.
So on Wed I fell over 2 own 2 clumsy fetters and felt like I had ANOTHER back fracture. I have had 7 if I remember correctly. So surgeons office said go they er to get ct scan ASAP and go from there. After a full day at er great news no new fractures. Still have 2 that were seen previously on ct scan. But not in the same area as pain. So yeah just pulled something. Still walking around whining slowly huntched over but no surgery. Yea.
Hope y'all are having pain free days and peacefully sleepy night.
Hootie hoo
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Oh SHUT THE FRONT DOOR SPOOKIE! Ha! No, but it is supposed to start in Monday night! Smarty pants! I saw the pictures of your area.... So beautiful!
So why were you IN the car, instead of out on the Marina doing something, or at least getting your feet wet!
OMG LittleGoats! It worked! WOW! Hah! We are so smart on this thread.... well most of us anyway..... I'm not naming any names, because she doesn't hardly even stop BY anymore.... Sure hope the little chit is okay....
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Right upper arm is killing me....got my flu shot today. Not sure I'm going to be able to sleep much tonight as they gave it to me in right arm and I sleep on my right side!
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Foots -I really really hate taking prednisone too. Sorry that you have to. Hope that it helped you breathe better. The weight will come off when you tapper off the steroids, it's just temporary. How is your dog Faith? What kind of dog is she? A service dog? Wheel chair assist dog?
My oldest daughter is developmentally delayed/ autistic and we got a service dog who flunked out of wheel chair assist school and became a companion/service dog for her. He was the most wonderful dog. His name was Banner. He was a rust colored golden retriever, softest nose and the sweetest dog on 4 paws. Big brown eyes that could melt a heart! He followed my daughter around everywhere and she LOVED him. I credit Boo-berry or Baba-louie ( his goofy nick names) with bringing my daughter out into the world of people. She learned to love him because he loved so utterly unconditionally. He was also really well trained, could open doors, pick up things, scoot under you to lift you up if you were on the ground, push you away from things, herd you to safety... crazy neat dog. To think he flunked out out of school (he was afraid of men with hats and other big dogs) other than that- he was PERFECT. He died of kidney cancer at age 12 - a furry angel. Thought you might like to hear about him. Tell me about Faith.
To Spookiesmom and Sassy - Ok What happened Florida folks?? It was chilly today - brrrr. Breezy and cool. St Augustine is so amazing. The architecture in that city just blew me away. I had no idea we even had buildings that old here in the US- or in that style. The Basillica was lovely and bay, old brick streets.. wow. There was some annual pirate festival they have once a year and the place was awash in folks dressed in medieval costumes and woman dressed up like bar maids. It was so fun, even if i was freezing. Mostly I went in and out of church gardens, fabulous churches with extraordinary stained glass, neat old narrow streets.. Martin Luther King marched there and was jailed in the early 60s - I didn't know that. So much history to experience. Why was there segregation... now the streets are full of every color of human being, walking, eating living together - no big deal, nice.
I will sleep well tonight.. utterly beat. zzzzz. Be well owlettes.
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Ha Rose! That's winter, Florida style!
CHEVY, it's kinda hard to do seatbelt one hand. Easier to stay in car. Have a few more pics for you
The top pic is looking towards Clearwater Beach. Bottom is Welcome to Dunedin
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Jwoo- have a wonderful time in London. I can't wait to see your pictures. I hope you make terrific memories.
Peppermint- so glad nothing broke in your fall. Thought you were following Spookiesmom... ouch. Pulled muscles are painful! Hope things get better.
Luvingoats- I would change MDs if there was something to change to. It's so true that being a former nurse helps but I never worked in oncology or ICU so there are many areas of nursing that I know squat about. Plus I have been out almost 8 years and so many drugs come out and new things to try.. medicine moves on changing endlessly.
Sassy your observations and suggestions would work if I wasn't me in Oregon. You should be an ombudsman for cancer patients, some one to help navigate the swamps! Did you finally get your issues fixed? I heard the water problem got mended.
Just read a NY Times article that said not to yack about vacations.. hmm. sorry I will shush now.
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