INSOMNIACS place to talk in the wee hours
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F-BB.... sorry kiddo! Wish I could make things better for you! Man, I'm afraid to see the hospital bill for when I was in there in February! Didn't get one yet... Our Insurance pays some, but no idea how much.... I was only in Thursday through Sunday.... but had the surgery, plus all the other stuff!
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Maddy such a sweet thought Thank You.
Thanks to everyone, this haven is like "Cheers" The old sitcom.
FBB so sorry didn't catch that you had pneumonia. Don't need other bothersome things with everything going on. Phooey. Just caught your phrase in your bio line. It's beautiful. Just beautiful. There's a wonderful wild life refuge that I go to. My mind went right there with your description. Thank You
The doc is going to do a meter read FRI AM. Not sure if it will change anything, may try to not eat real food or take my thyroid med till then. Fairly sure all the absorption the left over thyroid tissue is going to do is done. He told me I could eat and drug on Thursday, but Endocrine says 7 days for each. Tough when info conflicts.
I screwed up the instructions on PILL day. I was to drink one glass of water per hour for 8 hours. Had a sleep attack for 3 1/2 hours, plus the hour involved in driving and settling in. So, my water intake was off. That was to help get it absorbed, but had at least 2 glasses before sleep attack. Then did well after that.
I sooooooo want some bread and butter, and chocolate, and ice cream. All these fruits and vegetables are going to kill me. There is all this healthy food in the house b/c of the low iodine requirement. I look at it and think "There's nothing here to EAT".
Ziggy and Maddy and Chevy, same here multiple people in my family have had dementia. Very heavy on in my dads generation which interestingly enough is the group that was very heavy with cancer. 7:9 with cancer, 7:9 with dementia. 10th excluded died young in accident. Interestingly, all that had cancer had/have dementia. BUT what's great on my generation, none of the first cousins are showing dementia. There's a bunch in there 70's now --the first part of the bell curve---43 first cousins on that side. By now dementia had shown it's grip on all that became demented. So, there may be hope
When I made the cancer tree to convince MO about prohy BMX. I circled all that had dementia or were evidencing pre-dementia at time of death. It was "OH Chit".
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Chit Chit Chit........All the frigging study and the very piece I need to read I find today, two days after the PILL. Chit Chit Chit. Now it's in and I can't get it out. Not saying I wouldn't have done it. But finally found a piece that didn't follow the party line. So, I could have asked these questions before the PILL.
I knew about the breast(BMX), ovarian(out), leukemia, stomach cancer risks.
But this contract that I found raises a whole lot of other questions. Not seen elsewhere.
It was on a forum similar to this.
Positive it gives me a whole lot of questions to ask re: what tests should be monitored from here on out. Already know that endocrin is only monitoring TSH. Whole bunch more should be monitored. In fact the three I asked for in Jan that got the ball rolling are three of them and then a few more.
Use of active drug and pre drug together IS appropriate.
He's starting me way low.
No question I shouldn't be around folks longer than the plan. No question, I shouldn't be Near DBF longer than the present plan.
Can't just link it, but if anyone wants to read it let me know. I'm going to put it in my storage thread. I'll PM it.
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Sas you're back!!!!! Yea!!!!!!
Phyllo traveler. Please check in!
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sorry gals .... been away on my anniversary... nice couple days off now its back to the grind... trying to get some sleep before tomorrow. Hope you all are well and getting rest .... I will check back tomorrow.... night... V
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the Vinester checks in...whoohoo....Chevy, don't be jealous....there is a time for everything...
I just bought 2 tickets to see Wicked, in the "big" city of Boise, Idaho for Sunday. Gotta love kids. DD says what are you doing this weekend ? I say, ah....nothing. Her exciting plans with a big group got cancelled. The girl that was organizing it, mom, was dx with bc this week. I have been on the phone with her 3 times.
The spontanatity of youth...she suggests we do something...like get tickets to this Broadway Show. Now I am excited...I saw the "Book of Mormon" in Seattle in Jan of 2013. It was very good. Never thought I would be going to Wicked this weekend...
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Hey GG yes I like SAB , better than SOB. Whenever someone tells me their new babies & GK's names, I always do the initials thing. Worked with a gals whose initials were BM. Yuck. My college roommate married a guy named Clapp. He legally changed it to CAP as soon as his son was born. Readers Digest used to do a thing once a year on names. They were usually awful.
Spookie, I gifted more glass this weekend, LOL buy it and give it away. But I keep some for myself to be sure eh!
Still studying, Europe, England and USA all agree that they don't agree on how to treat my thyroid cancer or even get it diagnosed right.
Also, there is no consensus on how to work with it after the PILL is taken, the variations are all over the place as to in home management. Somethings agree, but at this point it should be carte blanche a-z agreement of how things are done.
Hope this isn't TMI or grosses you out, but I think this is a glaring hole in post self care management.
They all agree that the toilet should be flushed with each voiding 2-3 times b/c the highest concentration of the radioactive stuff is eliminated in the urine. That the hands be washed and the sink be rinsed after each hand washing.
Well if that be true, it seems logical to me that the bottom be washed rinsed with each voiding to get the radioactive stuff off the bottom. Not a single patient instruction source recommends it (one scientific article did mention it, that the genitourinary area could be contaminated.i.e show higher levels of geiger counter response), and I've read a several dozen protocols and articles. The recommendation is one to two showers a day. Well, I'm using a 20 oz spray bottle to rinse and gloves, AND BOUNTY to dry. Lots more work. Sheesh, all the water drinking sure produces allot of urine.
There's also no recommendation on washing rinse/ flushing the skin when tears roll on the skin. With all the extra water drinking, the tears were rolling.
Now today(WED.)drying up which is considered bad. Tear duct blockage can, frequently, end up to be be a long term complication. Not a single protocol recommends anything for that. So now, everytime I get through the voiding ritual, I'm putting a drop a plain visine in each eye. Rationale may sound crazy, but every protocol says to suck on lemon drops to keep the salivary glands flowing b/c it's a standard for them to get clogged too.
Well if that be true, than making sure the tear ducts remain flowing seems logical. Actually, should cry to make sure that they keep flowing, but can't make that happen.
They all agree the paper that is used to wipe the skin dry needs to be put down the toilet or in a special disposal bag. But no mention of flushing the facial skin when the tears were rolling.
Also, washing the reading glasses several times a day when the tears were flowing cuz the tears were getting the glasses wet which kept the skin wet with tears that are radioactive. They will be thrown away tomorrow. Dollar store glasses.
Nose blowing all agree that tissue needs to be disposed of the same way as for tears, but none recommend washing hands after either.
Doc recommended toothbrush be thrown away after three days. No protocol mentioned it or article. So, I'm changing it every day. It's got radioactive stuff on it, again seems logical and they're cheap.
Need to put this some place LOL. At least I've got it written down. I can send it to the NRC nuclear regulatory commission and let them do a study on it. It'd be a great research project if someone knows anyone in nuclear medicine school.
Not sure how many people would want there bottoms metered with every voiding. That's a picture isn't it, ROTFLOL.
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Hello Everyone
And Vinnie's back--so glad u had a wonderful time.
Sas u doing all right? It all sounds complicated to me.
Hole I think u'r perfect to see wicked.
I fell asleep so early tonite, so right now I'm up --Being out all day andI did some work tonite, so I was tired to early--I hate that. So I thought I'd check in.
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Cami, I dunno, shoulda been simple, but when it didn't seem right, I went looking for something that verified or discounted my thinking and couldn't find anything except the one scientific article that identified genitourinary contamination, but didn't follow through to the next step of what to do to manage it.
Hole in one yahoo sounds like fun. Like I said before you are surrounded by fun people YAY
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Sas we bumped into each other---OMG all the stuff u have to watch and do. It's a lot to keep track of--no wonder why u can't be around people--how long does this go on? I know my Brother told me he had to do it for 7 days, but he just says things so no one bothers him and the following week he went to the Dr. and I happened to be in the hospital with some contagious diseas and the goof walk in my room and I told him he was crazy and he stayed for a while, But my brother is goofy that way And he said he was done and fine. But I don't know how they could tell??? and he never explained chit to any of us. Like when he had heart surgery my sister and I didn't even know until it was done. And whenever I've had surgery he never says anything and I find out later he comes and as soon as they say I woke up he leaves--he never sees me. And my sister tells me after and he tells them don't tell Camille I was here, cuz she'll worry that I was scared for her. Jeez we sure don't have communication with each other do we. It's much more complicated than I ever thought---Do u feel OK or do u have strange SE's? Or is that later?--I feel so bad for u to take care of so much alone. I mean we're here but not much actualy help--can u wear thos latex gloves for doing things? Would that help?
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Sas- so glad you are back and feeling not totally horrid!
about your back end, if you have the means, get yourself a Bondell toilet seat/bidet STAT! They seem ridiculously priced, until you own one.
My DBF talked about it for years, and he finally used my surgery as an excuse to buy one. They are pricy, but, really awesome when you are having any issues with your digestion, after surgery, or if you just throw your back out. I lived in Spain as a child, so bidets are not completely foreign to me but it did take a bit to get used to again. Now I am sad when I have to use other toilets.
brb to catch up on everything.
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Jwow I think that's a great idea for all of us, That would be luxery for me but needed.
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Jwoo, I have a regular bidet, but it would splatter too much LOL. The spray bottle in this situation is actually more controllable b/c I can control the direction and force. With the spray bottle there's no splatter. But thanks for the thought
One of the funniest things in the world is learning how to use a bidet. You get it at least once in the face, and once having it hit the ceiling when you turn the knobs the wrong way Cami, I am doing way more work than required, but it just seems logical. Until I can find a source that says it isn't, then I'll do it this way. Not sure when I'll stop. There is radioactivity until july 25th 2014. They actually calculate it. The whole body scan is May 1st. I may do it this way at least till then. That puts it at the maximum recommended for many protocol things.
The variations range from 2-23 days on the different protocols from different sources. To me that's not acceptable. The NRC should have this down to a science without variations.
One thing I did learn tonight is I could get into a hypothyroid crisis in about another week b/c they miscalculated the cytomel I was given, and I didn't catch it until I was supposed to stop it, by then I was off it a week or so. So, based on that I'm restarting the levothyroxine tomorrow per the RO's direction @ around 1pm. That makes it the full three days 72 hours.
Your brother sounds a bit funny, "Don't tell her I was here she may think I was worried" Right the way you yak with your sister(s). Keep a secret from each other LOL, I don't think so. Plus, you get to gossip about him, just like you did when you were kids
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For SAS
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U should be sleepin g Sas or are u just awake like u do sometimes--or is this a SE? OH I never thought of a spray bottle ever, That;s a great idea. Thanks Sas. U always come up with something that helps.
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Oh Alyson, Thanks EYE needed that
Cami, Wish I could take credit for it, but for decades they've been used in hospitals. The are commonly named PERI Bottles. The space between the vagina and the anus is called the perineum. They were/are used for women post delivery mostly on the episioptomy which can involve the perineum, hence abbreviation PERI bottle.
When I wanted an empty bottle just happened to have saved a suave shampoo 22 oz bottle to use for another expensive shampoo that I was going to put into it, so from the second I wanted one, I had it.
I'm up all night b/c my study yesterday afternoon told me some other things. 1. that minimal absorption from the colon occurs and prolonged contact with the colon isn't good. RO said to take mag citrate today. So, I took it Wed afternoon at 4 pm. Waited till it was done doing it's magic to shower. 3. the instructions from the nuclear med sheet said wash linens and towels and clothes after 2days, but the instructions from the RO's office said bag the the linens & clothes to be stored for a week, then laundered separately. I'm going to run out of clothes. YIKES. 4. the RO's sheet says take frequent showers during the day. Nuclear med sheet says 1 shower/day. Other sources 1-2 showers/day.
So, I guess my substituting the PERI bottle- is somewhat vindicated. But talked with my nuclear med tech friend who disagreed with the use of gloves and peri bottle. Her rationale was that I had the raI131 in me so me getting urine on my hands didn't matter. She's been a nuclear med tech since 1970. Though she uses gloves to dispence, and if she gets any on her they have to do a major scrub. The RO's office says use gloves if urine spills. Duh had to be written by a guy.
Sure glad you gals don't mind me talking this all through. I'll have to see what's on the Hypothyroid thread. Didn't want to go there, thought it might make me crazy. LOL, I can do that easy enough on my own. Someone started it a few weeks ago. I put it in my FAVS, but didn't even read the topic box.
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Okay last learning from yesterday. The thyroglobulin blood test. That's the one that I asked for in january that came back elevated at 52(top mormal 30) The ENT was talking surgery within 5 minutes of hearing the number. It was redrawn on sx day b/c it now is the cancer marker. The baseline is considered from sx day. Found a source yesterday that said any thryoglobulin over 70 indicated cancer. Sx day mine was 109(that was 45 days from the first draw). Tues last week it was 12. 7ug/L. 10ug/L was the benchmark for not getting RAI131. So, now I'm happy BECAUSE
The coolest thing, today at 4:30 am I realized the pain that I wasn't happy with in the neck was gone. Methinks, we killed those buggars. To have pain this far post op wasn't normal. I could poke around it enough to get it paining again. So, I'll try to keep my hands off it and see if it continues.
YAYYAYYAYYAYYAYYAY!!!!!!!!!1
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Sas it sounds like it has started to go better now. I like that name Peri, reminds me of Perrier water--which no one ever will have again, ever.
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Cami now going to sleep . The Peri bottle does work very well. It.s cheap and would work probably pretty well with the d.;)
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Sweet dreams Sas.
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CAMMIIIIIIIIIIII! Don't go! What are YOU doing up? Other than nothing?
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Geez, I've just been reading and reading about you Sass, and I'm thinkin' THAT is a lot more complicated than I'll bet you ever DREAMED!
It's always best to research until you go nuts... ! I'm still researching about my hip, and WHY I have to still limp! And everytime I google something, I find more helpful information! The LAST was a whole like JOURNAL of this guy who broke his hip, and every step by step thing he did! So many of my questions were answered, and then I felt a lot better, of how I am doing! A really Looooooong article, but worth reading to me, a few times now...
The WORST thing was, when it was all healed up, and doing fine, he tripped on a curb, and broke the OTHER hip! I would just scream!
So Sass, have you googled something about other patients with this same type of treatment? I'll just BET they aren't being as careful as you are... It's so good that you have found all this information!
And when are you "normal" again? In me and Cammi's case, it would be never. I mean we didn't even start OUT that way.
And OH? So Mr. Vinnie dropped by? And is "Finksburg" really a place? You just made that up! No, we are not all alright! Did you see what is all wrong with Sassy? My God, she is glowing like those those little plastic stars, I put on my bedroom ceiling that one time! Remember?
Aly, that was a great little Owl.... Ha! Sass, you should use that as your Avatar!
Okay.... guess I'll go get all doozied-up for our trip to the Casino today... I GUESS it's fun, but man, I would rather be working in my gardens... or doing laundry, or even shopping at WALmart! DH just likes to "get-out-of-Dodge" sometimes, so I try and succumb to his wishes... I succumb easily anyway....
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Sas, I had no idea being radioactive was so much work! I did see your kitten today, he's quite cute with that special glow.
And another perk is finding your toilet paper in the dark:
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Sassy, glad the pain has gone! I think your new avatar has actually gotten rid of my headache
Love all the photos! Great way to start a day. (Chevy, I may be borrowing your last one)
For Sassy,
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With all the bathroom talk,
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OMG ROTFLOL. It's 1;37PM EST WOLK AT 1:pm. Owlettes. So, much learning my head is full.
Convinced my way was the right way. , but wish I knew on Monday what I finally put together by Wednesday. LOL. FBB yes I had no idea the work, but now I can write a protocol that works. I'll send it to the NRC and say you guys work this in too your protocol cuz no one in the USA is doing it.
I used to do this type of thing in the early days of EMS. Lordy, but without a computer. Then wrote what an employee health manual, and administrative policy and procedures manual that the two dovetailed each other, making everything match up.
The beginning point I learned was always, look for the MODEL plan. Now we have Clinical Practice Guidelines produced by the Government or the BIG national organizations. In case of the employee health manual & PP in 1988, shoulda been a piece of cake. Source model should have been NIOSH/ OSHA/ Code of Federal Regulations LOL didn't exist. FBB akd Larry the Cable Guy, "gotter done"
Well NRC was is responsible for this and unless I just plain missed it. It's not there to the precautions that I finally worked out. The periheral stuff is, but the self protection stuff isn't. Self protection is the highest safety issue for the patient, and then the protection of others, and then the environment.
BTW my poor septic system must have thought . SHE'S HAVING A WIZ BANG PARTY UP THERE.
I raised the question before this. How does this affect my septic system and the bacteria in my septic system? Everyone looked at me blankly.
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sassy, you amaze me! How your mind works is unbelievable
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Chevy, So happy you figured out the hip thing. Remember that ole song the leg bone connected to the thigh bone, thigh bone connected to the backbone etc. A limp can lead to back pain cuz the muscles all have to work harder to maintain balance. Which balance interferred with makes you prone to falls. YAY. Any chance you can link the article or write the web address.
That poor guy tripping on the curb. Reminds me of a two patients. Both in their eighties. One had two Great Danes. He opened the garage door to walk them, just as a small dog was going by, both hips at once. The Great Danes found new homes. The second guy sat on the control button for his lift chair. No one was around him to stop the chair from going up. He slid off the chair on to the floor, Both hips at once . OUCH
DBF and I have been together two years this week. He just got his first official haircut. I've been cutting it since we've been together. Ta da-WOW NEW MAN LOL And I can't even reward him for this milestone. Protocol ---Chit.That's another part of the radiation protocol --range 3 days to some ungodly number something months, most common 7 days.
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Sassy - I haven't been on much but GEESH girl. Your mind is going to explode or solve all the world problems or both. Glad the pain is gone now keep you gosh durn hands off of it. Ya hear??!!
I'm with you on the septic system questions. But with the TP being bagged the stress on it is probably less. DH says the liq/solids are not so much the prob as the TP. And it's not like you have a family of 15 putting stress on it. I would wonder what they would think of it going in the PUBLIC system. What does chemo do to septic, that would be a good question too. When "The Blob" glowing green emerges from your septic then you'll have your answer.
Sassy - What is "WOLK" at 1 pm? Need Ziggster to interpret. ?Woke?
Nettie - When is your test - ?MRI - I forgets.
Reminder for all of us.
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Reminder for all of us.