INSOMNIACS place to talk in the wee hours

Loveroflife

Blessings, thank you for sharing the info on PPIs. Thank God I have not had the need to take them. Possible link to bone loss also with PPIs. ShepK, not sure if you are aware of this. Btw, thank you also for sharing about your GI issues and treatment. I might develop intolerance to dairy too. I think the mild nausea I have been having on and off is from the milk. I have heard about Bromalain. Might try it.

Jazzy, went to Lowe's and Green Acres Nursery and got some succulents. I spent $90+. I went there with the plan to get not only the succulents but the pansies and cyclamen and left with 19 succulents. There are so many varieties! I was so into selecting them that I forgot to get the pansies and cyclamen.

PattyPeppermint

Loverly. Your the .2nd person this week that had their dog on Prozac. I had no idea dogs could take that. Glad it's working

tallygurl1973

good morning. I had my mammogram and ultrasound a week ago today. Still waiting on films to be read. Can't sleep... worried.

Brandy

sas-schatzi

Hi Patty glad you're here My doc suggested Prozac for Shats b/c of storm anxiety. I'm going to start her after her yearly visit in June. May even take her in early b/c we are getting into afternoon storm season.

Junie please, read the ketorolac material soon. I figured you'd go to a SNF. Unusual that someone doesn't. Overall the recovery is so much better. But you've been there before and understand it You might have missed the suggestion on getting a Social Work consult for "Evaluation of Services and Resources". It's a separate issue than your ortho schtick. The SW will come to the house and cover all kinds of things. Some services may not apply now, but you will know they exist for a different time. After DH was dx'd 3 months behind me b/c of the list that the SW gave us, we were able to apply for funds. 9000.00$ in grant money. Very COOL. Spent every penny of it on the designated stuff. But they're lot's of other things they can make you aware of i.e. someone that can do grocery shopping in those first few weeks after the surgery. Ride assistance to appointments. I teasingly say the Social Workers role is to know stuff that the rest of the world is oblivious too and need to know when troubles afoot.

sas-schatzi

Junie, allot of insurance companies are very cooperative too. Call and ask too talk to the nurse case manager. If they say you don't have one, ask how you can get one assigned. Most companies have them assigned for case management, but they aren't involved directly unless you ask. They are great in trouble shooting when things get bollicked. Ask her the same thing "How do I get evaluated for services, safety review of home for after surgery, and any other resources that might apply?" They can contact the doc for the order. That may get you the SW, A nurse or PT to make recommendations about grab bars, shower chairs, Homehealth----stuff.

Shep, one approach on the legal aspect is to go forward getting the records from the company, FDA, and hospital. Just b/c they say it's never happened before..........Hospitals do incident reports when anything is unusual. I forget what the law is regarding their use in a case.

Well now, Shep I' have been advocating for Genelex since 2010. I'll bring the link for jelson's thread on here. My 3A4(5% of population) is slow, 3A5(7% of population) is fast. Very rare. Do you use YouScript from Genelex? It's very cool.

On the D, I didn't notice adifference on the pain until I started the 5000u. I can link to a fella that is a world leader in Evidence Based Research. He's retire from Creighton Univ.

At first dx my D total was <4 not measurable. Yikes!. with that kind of deficiency. the standard treatment is 50,000u x7 days, 50000u1 wk x's 6 week, 50000u once a month.

The first dose of D felt like I was in a warm pool with warm melted chocolate being poured all over. OMD it was wonderful. Never felt that way again.

LOL, about the way you put it about your father.

sas-schatzi

Shep, I posted from the beginning, but where I get onto the soapbox is in Feb 2014

https://community.breastcancer.org/forum/73/topics/798301?page=8#idx_22

Topic: CYP2D6 ability to metabolize tamoxifen and recurrence

Anonymous

Hooray! Patty is here! I hope you continue to feel stronger and stronger

I am off to see the "wizard" today. It is a two-and-a-half-hour ride and this will be the first time my DS will be taking me. Usually my husband drives on the long trips. He is a fart face and no fun. My darling boy is lots of fun and although we are not going out for official fun reasons I know that we are going to have a good time. Depending on how I feel after the appointment we might even get to bebop around town a little bit. Lots to do and see in Charleston ... including really good thrifting which DS also enjoys.

Thank you everyone so much for all your kind words of encouragement. It really really means so much. So many big hearts here

JunieB my sister in spunk! I have been so worried for you .. So glad you will be getting good care after your surgery.

Loverly Mitzi comes from good stock ~ she is a true Shepherd doing her guard duties. How is she for herding? Marti can entertain herself for hours with a soccer ball. it's not quite like having a sheep but she can kick it and make it go where she wants. And if she has people to play with all the better! She likes to pass the ball back and forth and chase it together.

Marti is on a low dose of Xanax for anxiety due her dx of early-stage canine cognitive dysfunction. She also has been switched from Tramadol to Neurontin for pain management. So far I see much improvement (yay!) although I need to figure a Xanax dosing better as the last two nights she has climbed over the doggie gate and up the stairs to get me. Woke me up at 4 this morning pacing and panting in my face. She even pested the sleeping kitty. Ahhh, sleep is sooo overrated...Not!

Forever thankful to FeelingFeline... now I know to go look at the kitty-cat page to sooth myself back to sleep

Sas - will have some good reading in the waiting room ~ thank you!

Happy thoughts for y'all to have a happy day!

Smaarty

hi Tally, welcome here. This thread gets a little crazy and I think we missed you when you posted earlier. Hangin there! We've all been through it and will help where we can. Did you call to find out why it's taking so long?

Great news to you guys with good results. Yeah. Glad patty is feeling a little better. No new pics of Evie, I need to bug my granddaughter!

tallygurl1973

I'm going to call my dr that ordered it . Will let you know what they say. Calling now

tallygurl1973

she didn't answer so I left a voice mail.

Lookforward

.Shep positive vibes for good results , enjoy the road trip with your son. Open the car windows and sing Born to be Wild at the top of your lungs.

Hoping you get to do some bebopping.

Loverly we had a bit of a setback with Reno countertops are going to take a bit longer, will be a couple of weeks longer. I bought a mini greenhouse from Lowe's yesterday, very inexpensive. I started some seeds 10 days agoand some are coming up, always a good sign . Enjoy planting your succulents.

Patty glad you are feeling better.

Junie are you still dancing ?

Tally hope you get your results soon , waiting is very stressful. I knew before I got my results that it was going to be bad news, so no big surprise for me.

Holeinone

Brandy, call the place where you had your mammo & ask for the report. They give you a birad score. Not sure if it will help but can't hurt.

Susan, loved all the photos of Claire's shower. What an exciting time for you all. Did you make the scrubs? Your home & all the decorations & food looked lovely.

Hello to all.....

Patty, happy to see you, don't overdo it....

susan3

lover, yes chemo today...you keep better track of me than my family...lol. Off to sleepy time for a few days

Patty p, happy to see you posting. Hope you are getting your energy back.

susan3

holeinone, how are your treatments going

sas-schatzi

Holeinone ditto question, Phyliss asked after you..........She's getting worked up for a lump

sas-schatzi

I posted this last week one bowl 11 wide by 7in high, other bowl 5 3/4 in by 6 3/4, total $12

Thought it would be easy. Trapped bubble or controlled bubble isn't common. Found this today for $125, Kosta Boda Bubble Bowl - Vicke Lindstrand. This is actually clear glass. Kosta Boda is very much modern art glass. The bowls aren't the same. Mine are just slightly conical. or maybe it's lighting. But encouraged I'm getting closer.

JunieB

Sas - Ok, I don't remember why you wanted me to check out the Toradol (Ketorolac) info., but I've had it before and it does zero for me. Also, I wanted to make a clarification about a post I made a ways back in regards to I.V. Fentanyl, that you said was highly unusual. I may have misspoken, it was a PCA (patient controlled analgesia) with Fentanyl that I was connected to. Is that different?

Thank you for the directions to contact my insurance company, I will do it today. Until you mentioned it, I had forgotten that they do have a service like that.

Loverly - When we are in the midst of shopping for things we really enjoy it is so easy to get sidetracked. Despite having forgotten part of what you went for, sounds like you had fun buying your plants.

Susan - I hope your treatment goes well today and the SE's aren't too bad.

Lookforward - In my mind Yes! My actual dancing days are past with both fake hips and spine tumor. Ribs usually yell at me if I move around too much. But I can dream.

Tallygurl - Waiting is so hard! Does your Doctor or the facility you had your tests at have "MyChart"? or can you request a copy of the report for yourself directly from the facility that did the testing?

JunieB

o.k. Sas, I called the insurance company and spoke with their nurse hotline. It didn't give me a lot of confidence. The young woman I spoke with didn't have the answers I needed, but said she'd send my request to her team member and they would snail mail me the info. Information regarding transportation and shopping services available in my area post SNF. She also told me I'd need a script from my Ortho for a home health nurse if I needed one. Beyond that she seemed clueless.

There is a state program here in Oregon called NW Seniors & Disabilities. I'll check with them next.

Also left message with nurse navigator at hospital where I'll be having surgery. She is associated with the Amer. Cancer Soc.

sas-schatzi

Sensi, this is the link to color genomics

https://community.breastcancer.org/forum/71/topics/830635?page=6#idx_155

Junie the post from yesterday on the previous page. For Toradol/ketorolac to do it's magic of reducing inflammation and inhibit awakening of dormant cancer cells, it should be used with initial breast surgery. But has a place in subsequent surgeries. Now all the studies are retrospective. Prospective studies are going on now. That's why there is so much info included in the thread linked from this this thread linked . The idea is to give folks enough info to be able to talk with their docs.

https://community.breastcancer.org/forum/73/topics/843381?page=1#post_4691613

A great starting point is this presentation by Dr. Vikas Sukhatme who is academic dean at Beth Israel Deaconess Medical Center at Harvard. Published on Jan 21, 2016. Presented by Dr. Vikas P. Sukhatme on December 8, 2015 at MIT in Cambridge, MA.

"A Simple, One-Time, Inexpensive and Non-Toxic Intervention to Improve Cancer Survival"

https://www.youtube.com/watch?v=H8zVrYEW8vE&feature=youtu.be

sas-schatzi

Junie, on the PCA fentanyl checked net It can be used by PCA button only not on continuous. Ah-hah didn't know that. You did say you couldn't use Dilaudid or Morphine. Probably why they went to Fentanyl. I checked with my old hospital and they don't use it by PCA.

Years ago (7+) Demerol/ merperidine fell totally out of favor for IM or IV or PCA because it's metabolites made folks totally fruit loops crazy after >24 hours. Only took a few decades to connect the dots.

Junie, I shouldn't have put too much in the post. I've tried now to make it clearer. Hope it works better

On the insurance companies providing Nurse Case Manager and working through getting SW's and other stuff. The insurance companies learned over the years it saves money. In the early times the nurse just did a paper review(25-30years ago). They're was no direct patient contact.

Over time it was learned that allowing direct patient contact with these case managers improved care. Win win for everyone. Junie, that was just a phone person.. She actually had a couple of answers. Amazing. When a definitive person gets back to you, ask for "assignment of a nurse case manager that will talk with you and that you have direct access to for the remainder of your coverage by that insurance". If they say they don't do that, consider a new insurance when the time is right. It's been the accepted "Best Practice" for around 15 years.

Can't tell you what it meant to me and DH. I knew the system was available and got it working for us. Our nurse was able to trouble shoot so much stuff. Basically, keeping the docs and insurance on the same wavelength without interruption. Saved money for us.

Now either the newly assigned case manager can work through the SW order by contacting your doc or you can call the doc's office direct. If you make the call ask that the a message be given to the doc requesting for a SW to be ordered to come to the house for "Evaluation for resources and services". (this has nothing to do with Homehealth)

Tell doc at pre-op visit that you want homehealth after your discharged from the SNF. He may say that they will take care of that at the SNF. Not an unusual response. Then when you get admitted to the SNF--Tell them you want Homehealth to be set up for after discharge. Three days at least before discharge from SNF, ask if the the Homehealth has been set up. If it hasn't been done with all of these requests, It gives them 3 days to git'er done. Ask then each of the remaining days if it's set up.

One more thing may occur that may make you wonder how it happened. You may get a call from a person that says they have been requested to do a safety survey of the house b/c of the surgery scheduled. This has been usual for about 15 years. Who orders it is not consistent. Just ask for ordering person name. Check back with ordering person/company and get ID at entry.

The function of this safety review is to check for grab bars, floor covering problems, Shower safety. It's a cover every bodies ass review. Your mobility is going to be affected. If you are discharged home and are injured, Medicare/Insurance can deny coverage b/c the situation at home was not safe. You will never see this person again. It's their only function.

Now when you get home the first person in HAS to be a nurse if Medicare is involved. Not so with private insurance. PT(OT) can be the first in. Either does an assessment and writes the orders for the doc. THE one thing that Medicare and insurance has been trying to skimp on in the last decade or so is the nursing assistant. This has occurred b/c it was abused in the past. But safety showering and personal care are very important. If you feel that your safety in the shower is better served by having an aide. Don't accept a no.

Medicare will pay for 6 hours a week for personal care, bed change , and light meal prep. Private insurance may allow for grocery shopping. The key is that those hours are absolute for your care. Not traveling. A company may schedule it for 1 1/2 hours three x's a week or 5 day visits at 50 minutes. But that time is in your house working with you.

Jumie, it's a game. Some may object that I say that. You are the GameKeeper. In order to make sure all that can be done to make sure you are cared for, needs someone to watch it. If you as the patient are able, then it's good for you to do it. If not then a caretaker should step in.

Hope I did better this time.

Adding: I had a patient that had a sign in book for anyone coming in providing a service. I thought it odd until she explained that a particular company charged Medicare and services weren't rendered. She was billed when the service was denied. I thought it a good rule. It was date, signature, and reason for visit.

Loveroflife

Susan, I don't know why I have selective memory. Things I need to remember, I forget. Talk about forgetting....I forgot to tell you how lovely you and your husband looked in that picture of you two together. You both still look good.

JunieB, I also forget to tell you I am so glad you will be going to SNF to recover after the hip surgery. I was also worry how you were going to manage post-op since you live alone. I know you have friends from church who will most likely help you, but at night you also will need help. So sorry your mother is a narcissist. We can choose our friends, but can't choose family, can we? When I gave birth to my girls, my biggest fear was ruining them because I had (still have) my own baggage and plus my love would not be perfect.

ShepK, hope the long drive doesn't wipe you out too much. Hope they are able to figure out a plan.Did you find any bargain? I have been wanting to ask you this riddle: how is it that in 7 years both you and your baby will be 28?

Welcome Tallygurl!! Sorry the anxiety is keeping you up at night. Hang in there. Try to keep busy while waiting. That and exercise really helped me.

Sensi, when is your surgery, again? May 6th? I'm off that Friday. How can I help?

Forward, another couple of weeks? Oh boy! How is your stress level? How is your pup doing? I had fun with the succulents. I can see myself getting in trouble collecting these plants. Amazing the many varieties out there.

Hiho, hope your trip to California was good memory for your family. Also hope those suckers in your liver shrink to nonexistent.

Here are the pictures I think you requested 2 or 3 weeks ago, Ms. Sas.

Cyclamen

The succulents

sas-schatzi

Oh Loverly. Feng Shui. So BEAUTIFUL!. Please, post the checker game on Blondie's page. She has a real thing about Ladybugs. She has hand and ankle tattoos, with a story about each one. When I met her and asked about them. She told me the story about each one. I knew I should remember each one, which of course made me forget it immediately. Sucks. But Blondie totally loves ladybugs.

Holeinone

Loverly, your patio is peaceful & happy looking. I am anxious to get some things planted.

To all, Thanks for the concern. I had my 2nd Taxatere 8 days ago. All my liver enzymes & tumor marker have dropped. So, Good News on that front. My liver is still pushing on my stomach & bladder, they are both somewhat compressed. Supposedly when liver mets are dying off, it's painful. I am agreeing with that.

I got 2 weeks until next infusion, time to get energized. My sister, brother & maybe cousin are coming in 8 days. They will be here a long weekend, and staying at a hotel. I thought that was silly to begin with, but my DD will also be here. It will be best. Not as tiring. This Taxatere is the fatigue/sleep chemo.

Goodnight all.........

JunieB

Sas - Thank you for the explanation of the steps I need to take for my return to the real world after SNF. Sorry but I have to ask, what does SW stand for? I really like the idea of a sign in book for service providers.

Also, the ACS nurse navigator told me about an extra discount that is available to patients who have to travel to a doctors appt. through Amtrak (a 25% discount), plus there are volunteer drivers to pick a patient up at the station and take them to their doctors appt. and back to the station, with no charge for the patient. They also have funding for overnight lodging, but I wouldn't need that for post-op appts. The hospital and the ACS paid for my hotel back in 2014 while I underwent radiation treatment. What a blessing that was, plus people from church gave me money to pay for meals also.

Loverly - Your patio is so inviting and serene looking. I didn't know there were so many varieties of succulents. I don't think they'd do well here in Oregon, because we have so much rain and many overcast days. I too love the froggies and lady bugs, and I'd guess that the sound of the water in the waterfall is very relaxing as well.

I am glad I am going to a SNF too. Last time this hip was done I had no idea that was available to me, but when it was presented by my doctor I was relieved because I could just concentrate on healing and not get myself into trouble by trying to do too much. Knowing me I'd probably try to go grocery shopping by myself and end up in a world of hurt. I'm just determined that way, some might call it stubborn. As it was last time I had a great roomie whose husband came daily and took her for walks in her wheelchair and once I walked with them and paid dearly for it. I hope I am that fortunate in roommates this time.

Holeinone - So glad your treatments are making good progress. Hope you have an enjoyable time with your family/friends.

Shepkitty - How'd it go today?

Susan - Hope you're doing well after your treatment today.

Well, off to bed now that my pain meds are kicking in. Goodnight & sleep tight to all!

susan3

glad to here from you holeinone. Sleep up and rest for your company . Hugs

Lovely, beautiful...I'm jealous

sas-schatzi

HI1, glad that Tax is doing it's magic, sorry it's laying you low. The visit sounds great. How was the trip with the family? I'm listening to the radio as I write. Herman Cain just said he had Stage 4 colon cancer with liver mets 10 years ago.

Junie, SW was the abbreviation for Social Worker. I used both in the first post. Didn't carry it through to the second post. SW's perform different roles in different settings. The common thread to their work is that they are familiar with resources and services that are available to patients. The SW that will come to your home, will review these with you. It can be done in any setting, but when they come into your home you may end up with many more services because they are in your surroundings and can better assess your needs.

If you don't get them to come in before surgery. It can be done when you come home with Home Health(HH). All HH agencies have SW's on staff.

The reason I'm suggesting trying to get it done now is, it can take a 1-3 weeks to get all the services up and running. Doing it now will have things running smoothly for after surgery.

I forgot to ask your age or if you are disabled. Another source can be the county or city department on aging. They function quite differently, but can be a major source for services. A couple years ago I made the same suggestion to a friend. She was enrolled but had to be put on a waiting list. Once they got her onto the active list she was qualified to receive Meals on Wheels five days a week, cleaning person twice a week that also could be used for grocery shopping, a cell phone with alert necklace.

Someone suggested American Cancer Society. The SW will have bunches of organizations that provide stuff. With these types of resourses you will have to call and ask for stuff, but just having the list of the organizations and phone numbers all in one area is important. The organizations don't provide the same things, SW can help target which organization best meet your needs.

I'll do another post that is about money.

sas-schatzi

Found this odd piece for two bucks at the SPCA thrift. Can't believe I found it already. It's dome for a candy dish. Not useful for anything without the bottom. But it's pretty. "The Byrdes Collection by Hofbauer" I went back yesterday to rescue a couple of pieces that I'd been watching. One was gone finally. The other one was Century by Fostoria. Snagged it.

Couldn't resist. Found it too. Paul Sebastian

JunieB

Sas - I am 56, and have been on disability since my primary bone cancer in 2000. I used to do Home Health work myself in Las Vegas for the County Social Services Office. But it has been so long, I don't remember a lot of the ins & outs of the game as you said. Thanks again for the info. Appreciate all of it. I am working on it. As you said, now is the time to get it done, so things run smoothly after surgery.

Even though the candy dish lid is unusable for its initial purpose, it truly is beautiful. I love the bird pattern on it. You obviously love the hunt for new glass pieces.

sas-schatzi

Oh Junie I agree:). I was reading the history of Hofbauer. They were in Bavaria, Germany. They went out of business in 1991. They were absorbed by Nachtmann. Natchmann didn't have that many patterns on Replacements.com so I decided just to scroll them. Low and behold I find a pattern that I gave up on years ago. Anglia. Which when I tried to find something else on it, I came across another pattern that I gave up on. Stratton by Fostoria for Avon.. I had never followed Avon stuff, but ran across a piece a few weeks ago. It was a butter dome that was put together with a piece of Miss American by Anchor Hocking The Stratton avon Fostoria is a dead ringer for the hobnail.

Stratton

Miss America............the inner ring is different

It was a nice day. Hope everyone had a good day.

JunieB

Sas - Whoa! Those are beautiful.

Also, I just passed a young man at the bus station today, and he had a T-shirt that said "This is not the life I ordered" I thought it was priceless. I want one!