INSOMNIACS place to talk in the wee hours
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OK- i posted a thread- just letting everyone know and adding a template to follow. I do need one other person that is willing to help me- basically, I will gather all the info and send you regular updates (once a month) and if I am out of touch for some reason, then you would take the responsibility of it all. I know it will be a pretty big task, but i feel it is needed.
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Sassie collected the info from another thread. ? With contact info names n phone numers.
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Hey, Mammaray! Welcome here, the company is awesome. Started out as night owls (that's why we call ourselves Owlettes) but now 24/7.
TE's: they suck! Life gets so much better after the exchange, hang in there.
Sorry about the cervical cancer too, this cancer stuff never seems to end, that's why we're such good support for one another. We're also like a little family here, squabbles and all, but it's with love.
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us it normal to have insomnia post op?
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Welcome MammaRay! and Stix!
and yes- once i work up- i stayed up! I think being in bed so long keeps you from sleeping.
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I had surgery yesterday. ... and you would think i would be sleeping now..... never had this with my previous surgeries
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hope you are feeling ok otherwise. my bmx is the only surgery i have ever had (so far) and after sleeping for the surgery, then recovery time for the meds to wear off, i was up- for about 24 hours. i was so tired of being in bed, and it isn't like you actually get any sleep in a hospital when they are in and out of your room every 2 hours. I was also STARVING, so that was keeping me up, and the kitchen was closed for the night. I think one of the nurses brought me a pudding cup or something.
anyhow- maybe by tomorrow you will be able to actually sleep. If you can, maybe get the nurses to get you up and walk around a bit?
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JWoo, love the painting you did. Also, great idea on contact list. I'm still working on building up iron storage, so can't be the one to assist you on the contact list, but wanted to let you know it's a great idea.
Hi Stix and MammaRay, welcome to both of you. Always tough when you can't sleep. You'll find people posting on this thread at all different hours. People here are friendly.
Hi 2nd, hope you're doing well these days and that the folks are settled in. Lunch soon I promise.
Had iron infusion again today and I smell and taste iron, yuck.
Going to try and paint my hanging blue bird that holds bird seed in my backyard this weekend. Keeping FBB close in my thoughts and heart.
Hugs to all you owlettes....
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PawP- are those infusions helping at all? I worry about you!
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Pawprint, mom is settled in, Dad is in shock and is overwhelmed. Thanks for asking. Today is their 61st anniversary and he is so upset. He hasn't seen Mom since we moved her in the 14th, wants to bring her flowers tomorrow. Doesn't know how she'll be, if she remembers him or not. I'll probably be driving out that way tomorrow so he isn't alone. The city has a farmer's market on Saturday, maybe we'll check that out.
Yucky iron taste, but hope it works. How are Annie Mae and Snuggs?
Missing FBB...
Stix, are you at home or in the hospital? Please, try to stay on some kind of pain relief even if it's OTC for a couple days, that may help you sleep if you're not in pain. Try not to overdo either, I know what happens when you don't!
Mammaray and Stix, just jump in, this thread moves so fast at times it's really difficult to keep up.
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2nd- 61st?
that is so sweet that he wants to give her flowers. I hope she is adjusting to the situation, and that he is able to spend some time with her in some way. Alz is another one of those things that just should never happen. Where does all the research donation money go? -
Wow 2nd, your folks 61st anniversary...that's quite a love story. Your dad is such a romantic wanting to bring flowers. They are both lucky to have you so close helping them...but know you must be so drained.
Annie Mae needs a seeing eye dog, and Snuggs does not qualify for that job. Seriously, both the fur babies are doing well. Annie Mae still bumps into literally everything, including Snuggs. They both sleep a lot, but they are doing well, thanks for asking.
JWoo, my iron saturation has barely moved up after I think it's been 9 or 10 infusions now. Last week was the worse for muscle aches and tiredness. And my pain medication made me more tired. Ugh...I keep hoping it will climb up faster, 17% saturation and rising. But the taste and smell is gross. It seeps out of my pores. I need to borrow some of Cammi's nice smelling soaps
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Glad the furbabies are doing well, if a little clumsy.
I think we all need to raid Cammi's bath room!
It seems like there would be something else they could do to get the iron to stick. I can't imagine how hard it must be on you. ((hugs))
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Thanks JWoo, yes the back of my right hand is so sore from IV pokes. If this continues much longer I'm requesting a port. I must lack the necessary enzyme secreted by the liver that's needed to help absorb iron. Never had this problem until after BC diagnosis. Coincidence ??? Don't know. How are you doing these days?
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Morning gals! Hi Stix & MammaRay!
You two are just what we needed this morning.... We lost one of our gals, and here you two show up, and it's like someone else we want to take care of!
I can only say, whenever we have surgery, or anything heavy on our minds, nothing works right....
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Oh 2222222222nd! Did you see the Notebook movie with James Garner? Don't go see it.
But it was the most beautiful movie ever..... Her Husband finally accepted the "change" in her... I can't say more.
And seeing my Grandma going through this fast change, just terrified me! I looked it up, studied it, TRIED so hard to get a handle on what was happening to her. But I couldn't change a thing.... just be there... Talk about it to your Dad... if she doesn't recognize him, she might a little later!
I couldn't believe that she "forgot" my Dad and his Sister... Her mind was just slipping away.... and she couldn't help it, and neither could anyone else....I'm just glad your Mom is in a place that understands this, and will help her. Just be there for your Dad.... he needs you to help him understand.
You can maybe tell him "some people get very ill physically, but Mom is just not thinking right... but that's what we are for... just to love her, and understand. that she can't help it.
Little Paws.... thanks for telling us about your little Pups...I'm glad she is okay... What is? Just is....... Like 2222222222nd Mom.
Morning JWow, Sass, and what's this with Cammi? She took another shower, and wants the world to know?
It's like everytime I TAKE one now, I am taking one with HER! Speaking of which..... I gotta jump in pretty quick here.... then go paint part of the back fence... REALLY!
xoxoxoxo Sweet dreams, and good night.....don't let the bed-bugs bite little BB!
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MAMMA RAY !!!!!!!! Sorry to hear the new news...but you know me!!!!!! I gave you your name...lol
Hope to see you around here a lot.
Haven't read through threads yet..have to go back
Hope all is well
Still Teary eyed over FBB.....heart is breaking for family
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good morning ladies.
Welcome stix and mamma ray. Stick around and post often. These ladies are wonderful to talk to. They really get it when sometimes are friends and family just don't or sometimes we just need to be honest with someone who isn't going to melt down when we talk. :-).
Jwoo /SAS I like the list thing but is this something SAS already has ? If so SAS how do I add my contact info ?
Oh my dear 2nd. My heart breaks for you and you dad. He is very lucky to have you there for him. You are a good daughter. I hope things smooth out for you soon though. You have got to be exhausted.
Not sure who all mentioned filling their bird feeders but that got me motivated too. I am doing that this am. Love to watch the birds but have felt to miserable to give a rip about it.
So great news for me. I woke up this am with NO pain anywhere ! First time in over a year. I know I have complained enough about my pain on here , so you prob know it was 24/7. Either major pain or pain med and straight to sleep. Neither is a good way to live. So very depressing My rfa must have worked. Was major sore a couple days and fearful is was unsuccessful but today - wow. Amazing how not having pain can make you so hopeful for the future. I have like a million things to do... Now where to start. If you are up and have had your coffee and feel well enough, please join me. I am turning my music up loud and dancing like crazy I Feel Good. So amazing.
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Welcome Stix and Mamaray. Stix hope things get better after your final surgery. Mamaray sorry to hear about your other cancer, sucks, I wish you well. Funny how men can just turn off the stress, been working on this for years. Look up yoga breathing and deep muscle relaxation. Try them before bed, it may help, also write down all of your worries and plan to worry in the morning, works sometimes. I had been sleeping better before this new diagnosis, but must confess I am taking Trasadone, off label, for sleep I resisted meds for a long time, but as my doctor said, sleep loss has side effects too. Stephanie
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jwoo thanks for the info.. lol. I was outpatient at home when I wrote that message. I finally fell asleep at 4am till 10am But your message brought me some clarity when I had my bmx...I was up the majority of the night at the hospital when I had my bmx... so I guess it is no different.Thanks chevy boy and pepper! Sorry I am using half of some of your user names and EVERYONE else that responded. thanks thanks and thanks
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thx 2ndtimearound.. -
mamaray and stix welcome, wish you can keep up with this ladies better than me lol
2nd time, I just want to say thank you for been there for your parents. I hope the universe give you and your dad patience and strength to your mom, I always wondered why mom was losing her short memory and I did everything to help her my place was full of notes every where lol I was so greatful it was only her short memory cuz i could not imagine no been recognized by her
my heart goes out to you and your parents. Woo you are right where all the money goes? I still don't know how the info tread works but i am in.
PAWPRINT I had a friend that went through the iron thing and it is terrible sending you hugs are you eating lots of iron rich food? I remember her eating lots of different grains. Hope it start to stay in your system.
Also pls take pictures of your pups soon
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2nd - I use 2nd instead of my usual 2TA since we have new gals joining us. So your Dad is prepared if she doesn't recognize him. Maybe start a whole nother relationship with her. Is this the 1st time you will have seen her since you placed her there? I mean the 2 weeks is up. 61 years wow. Can we bottle what they have?
Welcome MammaRay and Stix. Be forewarned your name might be forever garbled on here. Someone will make up a nickname or shorten one. I myself am variously LittleGoats or LMG but I answer to anything. Edited to add of just Luv.
OK give Susan. You and MammaRay know each other really? MammaRay sorry about the 2nd Dx. What are the plans?
Aw Pawprint what we gonna do with you? Has the SassMaster taken on your case? Lacking an enzyme in the liver? I'm just thinking out loud. Remind me what specialists you've gone to. Doggie hugs to Snuggs and Annie Mae.
Patty - well just YEAH to a successful rfa and NO pain. You go girl but mind the heat. Actually cancelled our heat advirsory - that nasty humidity went down. I don't think my birds have even found the feeder yet. But instead they are munching those ever reproducing grasshoppers.
I read that staying off electronic equip. at bedtime helps. Something about the light source they emit. Same with TV. I'm bad, never read the Sas's suggestions up top. I'm the hit the pillow I'm out kind but wake up around 2-3 am awake for an hour or 2, not wide awake but then not really asleep either. Then when the traffic outside bedroom really gets started I fall fast asleep. I have threatened to buy a white noise machine but too cheap to do it right now.
Anyone have grandkids that use a white noise producer (only because I think the kids ones are cheaper)?
Yes Stix anesthesia and antibiotics and stress all mess with sleep. Not to mention pain, new routines, new appts, did I mention stress. Do what you can do about sleep. Nap right now.
Men's brains are wired differently. I also think they don't take on the weight of the world like we women do. I don't think my DH has ever mentioned not sleeping to me. Again we sleep in diff. beds d/t my/his snoring. Have for years.
Well, I'm sitting at home waiting for the UPS man. Did not get to go with DH to his appt and get my tetanus shot. He ordered one of those DR trimmers and darn it it's being del. today instead of Monday. We had one but it finally broke. We need to get after some of the brush. My low hanging front elm has taken over half the yard and goodness knows what critters are living under there (hope only toads and grasshoppers). DH likes it to hang low for privacy (we are on the corner) but ragweed, johnson grass, etc under there has got to decrease.
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Morning Owlies, Been a tough couple of days Hugs and Prayers. Be easy on yourselves.
Welcome Stixs and Mamaray
Chevy you always pull us together in the morning just right.
Patty, remember the post where I explained about RFA. That you would know fairly quick. Nice eh! The RFA burns the nerve ending. The initial pain post RFA is the nerve not being happy with the b u r n i n g. But the nerve is now dead. Particular to the use for nerve pain, is that the nerve was in a hyperexcitable state(Gate Theory). So, it was really unhappy, that's why the crescendo in pain post RFA. Conversely, it may not happen entirely this way. Just as each of our experiences with breast reconstruction is different, same with RFA.
RFA and Cyrotherapy(freezing which has the same outcome--burning) are being experimented with in use during breast surgery with the idea of killing any little cells that might be missed. RFA was developed in the early 90's in Sweden at the Karolinski Institute for use with tumors. It's use for nerve ablation came later. One of it's first uses outside of the original research was for the heart. Particularly, Wolfe-Parkinson White syndrome(WPW). Then was extended to other irritable spots it the heart for Atrial and Ventricular problems. A common study now for heart rhythm problems is cardiac mapping i.e locating the exact spot that is causing the rhythm abnormality. Then ablating them. Ablation is, also, being used to burn blood vessel supply to tumors.
The point is RFA is only 20 years old and has branched out for use in many other areas of use. Cryoablation started in the 70's and was used for use on the cervix. It didn't branch out into other areas of use for another decade plus. Only in this last decade is more research being done to evaluate it's use. This research is being done because of the wide ranging use of RFA now. One application is driving the other application. For those that chose to read the above, knowing the wider use of both therapies is a benefit.
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Lil goats
Re white noise. I keep a small LOUD fan by my head in bed. Serves 2 purpose, white noise, relief from hot flashes.
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Thanks Sass I want to read more about it
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Jwoo and all regarding list contact. The Mods started a thread that people can post there info if they choose. That's one avenue. The list that I did on STFU was for that particular thread. I will attempt to bring that list forward and you can see how it was managed. It was doable. Jwoo trust me, please, taking on the responsibility for all of BCO is too much.
I wanted to let my thoughts g(j)ell overnight. I would suggest all review what the MODS have done. I don't have the link. 2TA does I believe. Our pain over BlueBird's loss causes us to fear loss of each other. Smarrty referred to when I was "gone". That was unique because it was a banning. I couldn't notify you because the outcome could have been a permanent ban for myself, and/or a potential ban for someone that may have posted that they had contact with me. That was a painful experience for us all. I hope the Mods learned how injurious to all that was. But there learning is separate from what our immediate concern is, which is not to lose somebody without a way to contact them.
Keep in mind there are members that absolutely want there information kept only to themselves. It has happened that they are simply not able to be contacted if they choose not to be. It's a hard thing to accept, but it is true. I corresponded by PM with a gal for months who never shared her real name and we never talked on the phone. My last contact with her was a wonderfully happy PM about her leaving for a family safari in Africa. That was our last contact. She never returned to BCO. No way to trace her. She did not leave any contact info in her registration data. It was the way she wanted it.
A side affect of the STFU list is that I do have allot of phone numbers because I offered to be a contact. Plus, with those that I have talked with b/c of nursing/medical issues, I have more numbers than just the STFU list. One of the things I asked for on the STFU list was that each have two contacts which allowed for better connection in the event of one contact interruption.
Let me locate the list and C&P it here for you to review. I suggest our own list and the use of the Mods list is a best approach.
Jwoo the reason for this is- if our path is to wellness or death, what each of us has to do is grab hold of each life moment we can.
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Good Morning all--I know I'm late, or maybe I was already here, I never remember.
Welcome Mammaray and Styx, this is a wonderful place to lay it all out whenever u feel like it--we're here. And it has turned into a 24/7 thread so anytime is a good time. And mamma u also have another cancer--I'm so sorry.
Patty u feel good today Whoot Whoot--keep it up.
2nd U'r poor Dad, but bless their 61 years. I never lasted more than 6 yrs. was my limit with husbands.
Pawprint that odor reeks, I know it's like garlic from the pores only worse00I told my Dr.. I swear a family of skunk got mad at me all one time. That's when I really started slathering lotions on me, if coarse I've kept it up just not so extreme. Well sometimes, cuz one of my meds does awul things to my pores.--plus my garlic too. And yes pics paw--not of u'r pores but u'r furbabies
I know we all still have sad hearts,
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Sassy, do you mean "Our Central Address Book?" It is run very similarly as the Pic Forum -- you need special access to it. Easy to get but not available to everyone on BCO. The link to that is:
https://community.breastcancer.org/forum/7/topic/7...
Follow the directions......
As many of you know, I am in contact with others here on IT (and elsewhere on BCO) thru email, text, FB and of course, PM. Even so, if something happens to me, there's no way anyone else would know as my family has no clue about my BCO family. Maybe this is true for others, too? I know I've tried to track down NickyJ (for those of you who remember her, she's the member in France), she just stopped posting (and I have feared the worse) and I have run into enough brick walls trying to find contact. Lesson learned: there has to be a better way to keep in contact with everyone if they fall off the BCO grid. Willing to help Jwoo (or anyone else) towards this end. The passing of FBB has left me sad and empty (as many of you can relate).
For those who have commented about my parents: yes, they did have a very special relationship. All the time growing up, they NEVER had an unkind word or raised their voices towards each other, never argued (so no wonder I can't handle conflict of any kind). That is, until Alz reared its ugly head and Mom became cray-cray. In many respects, similar to The Notebook, except only good times (in The Notebook, they seemed to thrive on disagreements). So, the past year or so has been very difficult on them, and me too. My brothers have offered assistance remotely (their wives don't even acknowledge my parents or me) so in many ways, feel blessed with the timing of my BC to be able to care for them. One year ago today (and only 3 weeks post-revision-sx) the movers were packing up their house. So much in one year............... And I can't tell you how much I appreciate all of your support listening to my venting and whining when I had no where else to turn.......
Gotta run, several hours behind where I need to be, just wanted a quick check-in.
Love and gentle hugs to all the Owlettes out there, happy a wonderful Friday!
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Sassy, I know some threads do a roll call, is that what you're talking about? I started something like that, if that's what you have. Contact me later (better yet, let me contact on my way, we can have another one of those wonderful commuter chats). I'll C&P what I have to myself so I can have later today.
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