INSOMNIACS place to talk in the wee hours
Comments
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SHEP to Kathy " Men are like puppies; very destructive if left unattended for any period of time. Give him lots of busy work and be sure to praise him for every little accomplishment. Good luck!" ROTFLOL ....TRUE
I just learned something recently on cooking. Heat the pan first. test how hot it is with a droplet of water. Once it sizzles, then add the olive oil and or butter. It avoids the fats from getting too hot/ burning, then wait a tad and add stuff, also, can retest with a droplet of water
Mostly Mom, Loverly caught that thing about the nitro working. It really didn't. It's more likely that his chest pain went away with rest. Please, review the chest pain thing on the link in the previous box. I added some stuff.
It will be nigh on impossible to get him to study the difference between stable and unstable. Only a few times(2) in my nursing career did I say to a patient something like " Pay attention or you are going to die". He needs to take responsibility to learn that post. It could mean the difference between life and death. If he refuses. Look him straight in the eye " If you die b/c you didn't know when do get off your duff, it's your own fault, and don't blame me" Or something like that. The key is confronting him with the reality of his responsibility.
Jwooooohooohoodidyoupoop
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Shep, just read your BC and mets story. CHIT. But I so get what you are saying. I've had life long pain with the postpolio and then several traumatic injuries to the spine( c-spine at age18 and 24-28) With the brain tumor it was dx'd as an incidental finding on a rule out film for a concussion on the other side. I was very lucky, as meningioma's are very connected to BC. It's kind of like DCIS. But with the brain, if another one occurs, it will be very hard to tell b/c I have so many things wrong in the head a "symptom change" would be almost not detectable. Eyes>>nystagmus and visual field changes, Ears> tinnitus BPPV both that change daily, headaches that change daily, Balance>>???, Memory changing, Concentration changing. Pain different than headache comes and goes. It's all doable stuff, but the worry about detecting a real signal that something's going on. OH well.
Sorry, that your doc's weren't listening. It's kinds of like the difference that I explained about stable and unstable chest pain. There is a difference between stable and unstable pain. MY Greg is gone b/c his idiot doc didn't do things right. He had back pain. But was very heavy. Doc never did one single diagnostic image, just kept feeding him pain pills. Greg never once complained about back pain to me, and I didn't know he was on pain meds. He wanted his care between him and his doc. At diagnosis he had lymphoma everywhere. Probably for many many years.
Shep have you tried Baclofen. Have you tried Fentanyl patches? BBL but need to follow up on this
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Shep why haven't you got a pain pump? Should have. What's up with that?
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Quick check in .....
JunieB - Cool brace! Really.....FFH went through so many prior to his knee replacemnt, I admire well designed gear. Fingers and toes crossed it will serve you well and speed your healing. Prayers for No infection.
Sassy - I think the whole BC experience puts us in the constant fight or flight mode. Add everyday chit and things make it all tougher. The depression can be the body's way of saying "hey, enough is enough!"' forcing us to slow down and re-evaluate, restructure and relax. And take appropriate meds
Wish there was a way I could wipe the unpleasant chit away from you and replace it all with happy stuffs. I hope when you are down that you will always still be able to feel the love we all have for you. ♡ Your advice to me about staying put with the pillows and heating pad was just what I needed. Like I said to Loverly, we're so good at telling others how to care for themselves, yet we don't take our own advice. I always feel the need to do "something"....you gave me permission to chill and be lazy
I don't blame anyone for missing the BC. Nothing shows in my blood work (no tumor markers and counts always perfect) and the x-rays I had in late 2010 showed no abnormalities in my spine. BC tumor and node were too small to be felt or seen in a mammogram. The Mets moved fast.....I'm stable now so that's what matters.
I had done the genetic testing to try to find a solution for the pain management. Opiates don't do anything. I've been reading but not posting in the "sciency" thread after the let down of my Neuro Oncologist telling me that the CYP2D6 and associated pathways are too poorly understood at this time to be useful. Paint ball therapy is the best he can offer.
I finally was able to get the Ativan filled. Haven't taken it yet. I need to figure how to best combine it with the arsenal of drugs I have on hand.
Didn't mean to ramble so.....swapped out keyboards and this one is making my fingers fly
BBL
Hugs to all!
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I went for my 1:00 p.m. appt. for the brace today only to find that they don't have an off the shelf brace for me, but have to do a custom order. Ortho's PA put recurrent hip dislocations on the script she printed, however the doctor's office had sent a dx code for "hip pain" only, NOT "recurrent disloctions." So I had to call them from the orthosis clinic to get them to fax the chart notes that provide the correct info. so Medicare will pay for the brace.
Anyway, now that that is worked out, I now have to wait for approx. a week to get my brace.
Thank you Sas for taking the time to call today.
Shep - How are you feeling today? Is pain any better?
Kathy - Wedding tasting sounds like it was fun.
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Shep, even though you are a UM. I have no clue how an implantable device that can deliver a drug that baths the spinal nerves will work. BUT a pain management doc should. Particularly, if the are associated with a teaching hospital.
The problem with pain management docs these days is they test for drug levels. For example, how it can work against someone. Say I'm on a maintenance dose. Then have a crisis. Unless you have documentation that a crisis dose can be taken and then a urinalysis is done after the crisis dose. It may indicate "abuse". Pisses me off if then one has a problem.
Witht implantables there is a constant delivery. Then there is the ability to cive a boost at timed intervals. It's very similar to Patient controlled analgesia(PCA), except the device is underneath the skin. A friend was going to get one the cost was something like 243, 000$. It was going to be covered by insurance, but things worked out differently.
The difference of how it didn't happen is significant. She followed every step from a-z with management. The step before insertion was a trial of withdrawing each drug she was on. The key was to find out what pain was now present. The protocol I thought excellent. What happened with her was to everyone's amazement. All the "catastrophic" type pain had subsided once the "catastrophic" drugs were removed and some time had elapsed.
You are different. The key for you is the difference. Your spine's a piece of a building out of Wolfen's movie. Your spine ain't going to recover. Cement at given points may stabilize. But building anew, no. It's a Quality of Life issue(QOL). You have a right by the Patient Bill of Right's to have quality pain control. You may or may not know this. But knowing you only from here, I'm guessing, you have accepted your lot in life and really don't believe you have much longer. Ain't I the bitch. But I want to force the issue.
Whether we have a few months or years, quality pain control is in the Patient Bill of Rights. Any reasonable pain doc is going to act aggressively in doing a localized implantable pump. Implantable pumps allow for localized pain control. Do not change mentation. Allow for much better quality of life. The fact that quality of pain control allowed by pumps without changes in mentation is a true lack of teaching about how they work.
So what's the story? Have you considered this? Has anyone talked with you about this? Have you turned it down b/c you also think you don't have that long? Proper pain management can get you OFF those drugs that make you feel like a space cadet without oxygen.
Now things to consider about implantable pumps.
1. There is a process to work through that defines the appropriateness of their use. This can take months. Get the process started early if they are indicated i.e Pain management specialist referral. Insurance is a cluster f**K so make sure all insurance approvals are done ahead of time with "authorization" I.D. number well documented.
2. Not all docs are equal, The bestest pain doc that introduced pain management to my county and essentially Florida in 1991, had a surgical problem that no one could identify. Lot's of infections. He even had an outside monitor come in to monitor every step of the process. I was never privy to the outcome. So, asking for a history of surgical infections with a definitive response is important. It's important in all stuff, but just relaying my observation of this scenario.
3. Check FDA history of infection reports on that manufactures devices.
Transferred this to Pain and Other Things with some modifications
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Junie, you have F**king learned the system. The system doesn't work without the right diagnosis code. You gotter right , fixed it before the foul up. Good for you You may still have a bit of a foul up b/c of the code even though the notes got included. The ideal right dx code====ICDM 10 blah balh. may throw it out of the system for non approval, but make the phone call to the 800 number if it comes back not approved and baste their asses i.e "did you read the note?" They are functionaries. Only know numbers. The best would have been a fax with the correct ICDM 10 code. But you know what to do if it comes back unapproved.
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Okay, so much stuff that sucks.........realized it's Thursday not Wednesday. YAY. Went to dinner at a place that does trivial pursuit on Thursdays. Totally fills the place. Several good things happened. Laughing, more laughing............then more laughing. It's on the future list.
We got to talk to the guy that runs it. He came there when another gal ran it. She retired . He took it over for beer and a meal. Then made it more refined. Now is paid for it and then went and found 3 other places that PAY him to do the same thing. Isn't that fun.He 's retired and works 4 nights a week making people feel happy and competitive in a very fun laughing way.
Now tonight for Donnie and I, the table we were at, was the only one left for a wheelchair person. They have many, but we hadn't been served yet. We were out on the deck having a smoke and were asked if we minded moving to step up table. (the kind you have to climb up on) Of course --duh, we would move. The waitress took off a round of drinks and 10% unbeknownst to us. We said she didn't have to do it. She said "You don't realize how many people say no to that request?". So, laughs and a reduced bill. YAY I gave her a tip on what the original bill would have been. One good something , deserves another good something.
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Jwoooohooooonotrelentingtillwehaveananswerdidyoupoop
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JWOOOOOHOOO this is with you in mind . but I will transfer this to the Constipation thread. Okay into the sauce. You know when I get into the sauce. I get bitchy and pontificating. A docs lack of interest in pooping post op is not just an error it's dangerous.
Many subspecialties of surgery address the problem right up front in "Standard Operating Protocols for Post Operative Management". Post op day 1---means operative day plus one day. A stool softner is given. Then it is given each consecutive day for each hospital day.
On Hips and knees---if they haven't accomplished a poop we went to fleets on the third as as they were usually shipped out to rehab.. The key was a poop before discharge.
Belly surgeries were managed differently , but that's a long story.
I take umbrage at a doc that lets a patient go ten days without a poop. Great umbrage. Unconscionable. MY GREAT concern is does that patient have an ileus. An Ileus is when b/c of sx the intestine goes into a "sleep" state. The snake sleeps. Our intestines move like a snake. It's called "peristalsis". It's nothing to mess with , ignore , or deny.
Junie or Shep, I think described the results of an Ileus absolutely the way it occurs. Projecticle vomiting and Nasogastric tube insertion. Then if and when the colon starts. it can be a blow it out the other end. Not usual, but can
GUESS what proper management can avoid it, almost always. Almost always.
Seriously improper management can lead to all kinds of complications. The most serious being death. The management is just basic. Basic. Pissing me off Jwoo had a problem. Should not HAVE HAPPENED. IT IS WRIONGFUL CARE UNLESS THERE WAS A MITAGATING UNCONTROLLED CIRCUMSTANCE. IT IS BULLSHIT.
Just typing away didn't notice the caps were on, but decided to leave it that way. Such a bitch I am. Zeus would love me.
Lookie, make up a zeus poem on pooping. I know not a real jewel of a thought but after 40 some pages on the Constipation thread and 40 years of nursing, I'm just real tired of the medical profession taking pooping for granted. If that system doesn't work the body doesn't work.
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Jwoodidpoop. 7th post from top. Sentence with Beetlejuice emoji. Anddon'ttellmeIdon'tpayattention. Hah!
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Hi ladies,
Just a quick post..a couple days ago turmeric was mentioned for inflammation. I have tried a tea with turmeric, ginger and lemon, but tonight tried a new turmeric drink that was really yummy, so wanted to share.
Turmeric Milk:
6 oz unsweetened cashew milk (I used unsweetened vanilla almond milk)
1/2 tsp Turmeric
1/4 tsp Cinnamon
Pinch fresh ground nutmeg
1 tsp Agave Nectar (or Maple Syrup)
Pour milk into mug and whisk remaining ingredients into milk.
Microwave until warm, take out every 30 seconds and whisk until spices dissolve.
May all of you have a peaceful and pain free night!
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Story, one time I was in charge, saw this nurse transporting this patient that had this belly like a balloon. Got a foley cath bag setup instead of a rectal tube., b/c of the guys history. Went to the bedside and sent a beeper text to the ortho guy who wouldn't answer the phone call. The young nurse had no clue the danger the patient was in, nor did the older nurse that handed the patient off to the young nurse. Nor did radiolgy. The belly need to be decompressed. I risked loss of licesure by decompressing it. Oddly, I would have chosen a rectal tube. Not sure why I chose the foley cath connected to the folley(urine bag). Inserted it. The bag flew about 3 feet above the bed. there was that much air released from his colon. Just after the ortho doc ran in, and I explained the 911 that he didn't call me back on and was hoping he would cover my action by an order. He did. the guy felt immensely better. The key is I acted outside my license. Could have lost it. No excuse. I shouldn't have.
Just saying in my defense, to get to that point it had been building for at least two shifts if not days, no one recognized the danger Intestinal tissue under high pressure becomes ischemic(blood flow changes). Tissue can die under those circumstances. He could have been subject to rupture of the colon or tissue dying. In the world of nursing I was not a good nurse at that moment........sounds like it I was, I was a rogue.--------See by law nurses are defined as the "handmaidens" of the docs. Unless there is a specific order or a standing order nurses can't act.
I won't tell many other stories, but my doc's trusted me greatly. The one's I love the most called me Dr. sheila. We laughed about it, every one did.. The doc's did it with great respect. My boss who was the bitch from hell hated it. They didn't respect her at all. I'd shush my doc's b/c the bitch from hell would make my life miserable.
I miss it. I miss my nursing, I miss trying to make each patients life better. I miss it
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Sensi, how you feeling. First chemo went ok?
Hope everybody has a good weekend.
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JunieB, the person who filled out the order at the ortho's office deserves to have some sense slap into his/her head...
for giving you more stress than necessary. 0 -
First chemo yesterday went ok. Had an adverse reaction to the taxotere at first. Within a minute or two I started to turn pink/red, chest got tight and breathing got funny. The nurses were on it within seconds with the "pink bucket". Gave me benedryl, Pepcid and one other med. It resolved quickly. Doc came and checked on me, and we tried again half hour later and I tolerated it well.
SE today, weren't to bad. Had some light nausea at the end of the day and episode of loose stool. Just thanking the good lord that it didn't happen when I had taken Chance for a short walk. It happened within seconds. Would not have been a fun walk home.
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Tulip - that sounds GOOD! I am going to have to try it. Yay for your DD doing so well with her muscle tone. Does she have a special exercises she does daily? Hope they are fun-ish ones and not the kind that cause discomfort. Hmmm....I think most of us here have a little "Sheldon" in us! You are a special mom with special kids; blessings to the three of you 😇
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Sensi - OMD.........I think I would be wearing those "adult" underpants for the rest of the treatments, yikes! Did the doc give you anything to take for the nausea before the chemo sessions? I don't know anything about chemo, but have read others say their IV drip had been slowed to make it more tolerable. Don't know it that is an option for you? What a good mommy, taking Chance out when you are feeling ucky. Is Joey back at his own home? How did he and Chance get on? Marti HATED her nephew Rex when he was a puppy. Now they are best buddies and play nicely together. Big Shepherd and little Boston Terrier are quite a sight! Keeping you in my thoughts and sending positive energy to you for a comfortable and uneventful treatment session each and every time 💜
Loverly - Ahh yes the classics..... Your picture is of the time honored "biff" which is applied to the back of the head. The "cuff" is applied to the forehead and is equally effective 👋
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shepkitty-I said the same thing to my sister, I might have to invest in some depends. I had a fairly mild day, until that hit early evening. They did start the drip off at lowest level. They gave me anti-nausea meds in drip before starting the taxotere. Joey has gone home. Have a super cute video that I've tried to share here, but having trouble. I was told short walk was good and to keep moving. I'll have to see if I'm brave tomorrow.
Sorry for the bold print. Could not get it to turn off.
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Sensi, I have a word or two about chemo D. You already know it hits sudden and hard. Being a person who tends more toward C, I wasn't too concerned about the D. I soon realized THIS IS CHEMO D. Don't treat it like normal D. Imodium didn't work, so doc prescribed Lomotil. I didn't mess with it again.
I also had horrible abdominal cramping with gas. A friend with Crohn's disease recommended Bentyl. It worked great and I took it regularly throughout chemo.
Take it easy, rest & hydrate. I couldn't stand plain water so DH bought a SodaStream and I made lightly carbonated lemonade. It's still what I drink.
The steroids they gave me affected my bladder control, so I did wear Depends for that, chemo day & day or two after. Not too proud to.
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Sensi - The bold type gets stuck on me too when I use it here. Not always, but enough to be annoying. If the anti-pukie med in the IV didn't help, can you ask for something else? If you can't get the Depends, you could double your undies and use maxi pads! Hee-hee.
Here's a pic from the first time we baby sat our grandpuppy. Marti was such a jerk! She camped out in front of Rex's crate and grrrrred him every-time he tried to come out. Very glad they get along now. Although she'll still knock him in line if he misbehaves 🐶
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Mags- that is the truth. I normally tend to lean towards C myself. The D hit out of nowhere. Was talking to sis on phone, stomach started cramping and it was quick. Been ok since. Knock on wood. I'll keep the lomotil in mind. I was waiting for a second episode before taking Imodium. Been 5 hours and been ok. I'm off to bed. Thanks for the pointers
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There you are Sensi. I thought about you yesterday while I was showering and was going to post last night to wish you a good infusion, but I caught the "funk virus" from Ms. Sas. Sorry. Good think I shook it off thanks to a dear friend who could sense that something was wrong. Sometimes I just need an elbow nudge or a headslap to snap out of it. Good thing you made it to the throne in time. Hope and pray for minimal side effects.
Ms. S, the photo of the 3 generations is priceless. Evie looks like the mommy.
WildT, thank you for sharing the tumeric milk recipe. Tumeric is an acquired taste. I tried a few different tumeric drinks and so far the one mixed with cherries is the most palatable. I forgot to tell you that we are the same age. Your kids are twins? And you are caring for both with special needs as a single mom? Bless your heart.
Gracie, hope you had enough energy to keep up with the grandkids today. I didn't sleep well the last two nights either. Kept on waking up. So annoying.
Ms. Sas, glad you are able to help ShepK. It's interesting that sitting puts more pressure on the spine than standing. I can see with lying down but more pressure thanstanding?
ShepK, hope you are lying flat on your bac more than sitting. Need for you to get better. Have you tried Tens unit? I wonder if acupuncture would help you? Reese is my brother's. My other sister (taller one in the picture)does not have kids. She is the Aunty that all her nieces and nephews love. Wish she could have kids herself. She would make a wonderful mom.
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Oh Wenchie, the whole pool thing is so ..............not sure, funny, happy. poignant? WOW to have that many people that know you and care in a hardware. You are so lucky, haven't known that care in 25 years. My dad and mom had standing room only type funerals. The sad part about Florida is so many move here, but oddly don't want to get involved. I did initially, but they wanted to bleed me dry about committee stuff. I backed off when my mom became critically ill in 1996. Just never jumped back in. Now, I don't have the support that's created when you put yourself out there. The involvement in raising Steve. Working. Actually, Nurses have a failing. Too much work and family. Creating a social life around work. But it fails. Anywhoossses......I read a statistic one time x amount of folks live within 25 miles of where they grew up. I was stunned. It was very high at the time Thinking about my family. The paternal family. Were spread over the USA and Mexico. The Canadian family fits the profile. In a do over, I would have pushed to be where my big happy family(150 plus) was versus Greg's very small (10)negative family was.
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Lori, another tough cookie! I want to go to the same church you do. What wonderful people!
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Wenchie, how do I phrase this, the putting up with some grief, for a large sausage several times a week, with great response to what I like and I don't like. Great respect and kindness in all regards. He does stuff, but never around me. Never once seen him drunk. He has an addiction, but has never ever let me see it, or exposed me to it. AND he works 7 days a week if the work is available. In a younger time no way would he be considered. But it's good. It's odd. It's nice. It's unreal. It's a fun and lovely. To be this way at 66. Supposedly, I'm an old lady. Well, we are the new whatever's . No clue. we work. Tis nice.
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Sensi, I only had one chemo b/c I almost died with it, but the stools were from satan for about a week.. Even the standard oncology nurses couldn't explain them.
The "pink bucket thingy" no familiarity with the talk, but ask them to start you out with next trick time,
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Mags - Those baby kitties and the onesie pup were one of the first things I saw yesterday morning. Mega high cuteness that really made my day 😊 I copied the pics and emailed them to my BFF who has been feeling low and his day was saved today - kitty and puppy power is indeed strong medicine 😺
Gracie - hope you had a fun time with the grandkids today. So sorry your DGD has to suffer JRA. Hopefully she'll have another remission soon that will be permanent. 🙏
My Great Aunt was born with JRA in the 1930s. They didn't have the NSAIDS back then, heck, I don't think they had any meds to help her! The treatments she had were barbaric. To keep her legs from from becoming misshapen from the disease, the doctors strapped boards to her legs and then tied her down to confine her in the bed. She was only 3 or 4 years old and was kept that way for months. Finally, the family realized the harm and suffering being caused and brought her home. My Great Aunt was in a wheelchair most of her life and had terribly bent and curved fingers. Somehow she was able to create the most beautiful and intricate embroidery. She never complained, had the most cheerful, warm and gentle personality. And a delightful laugh and sense of humor! I was fortunate to have a Rheumatologist who was one of the top researchers in the US. My pain was mostly under control and I was able to all things any other kid could do.
Medicine keeps getting better and better for so many conditions. May your DGD be blessed with all the best care and treatments available.
Lupus, Fibro, BC....Wow. Your fatigue must be so overwhelming. Pain too. Gentle (((hugs))) to you. So much you are dealing with..... Isn't hard not to say "how the F would I know?" when the docs ask about new pain? I get grumpy, so there is a good chance I will say that in the future!
Mags and HiHo, I hope what I write next might be of some help to you too......
As for the shock of Stage IV...... It fades after a while. The awareness of it is always there, sometimes more, sometimes less. The advantage to being IV is that the docs monitor us more closely and are able to catch even the most minute of changes right away. I think the lower stages get more "surprises" than we do because they are not watched as closely. I was always IV so that is just conjecture on my part. Others with more knowledge, please chime in. I do know living a long, full life is possible for us. I read and read and read........ Researchers are now having to totally re-evaluate treatments and their long term effects because we are LIVING so much longer now. I do worry, sometimes I worry a lot. I don't think that this disease is going to kill me though. I know things can always change, I could have progression and failed treatments. I would be a fool not to be aware of the "bad stuff". Thinking back to the advances in the treatment of JRA and looking at the incredible advances we are now seeing in cancer treatment, I do believe we all have a real chance of not necessarily beating this damned disease but the chance to live with it. Hopefully comfortably for a long, long time.
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Shep I did a study of the Microbiome last year .It is the study of the of the bacteria that lives on us and in us. These bacteria are called commensal. Meaning they live with us.
I recently, read a study that referred to the same concept that cancer may become commensal. Of course, it was stark statement. Cancer being commensal. But HIV/aids is commensal. Hep C is commensal. ALL commensal with treatment.
Same as polio, measles, rubella etc by vaccine, but yet vaccine coverage isn't permanent. Depending on the vaccine. Stark thoughts
But not so stark when , it is put into the microbiome and genetics. Put the two together and we have a great pair to solve the problems.
It's happening now. Not fast enough for us maybe. But research is happening at a pace that we mere mortals have no clue. Even Sheldon.
But what I hope science doesn't forget or tries to suppress is that we it as a species came this far because of resillency.
We are amazing with all our flaws. AND we got to the year essentially 1900 with out much disease that was self inflicted. What I object to is that current orthodox medicine through away the old ways. Discounted them. Negated them.
Our species survived through the ages because we observed what caused wellness and what caused illness. Then we came into a time that changed this. The old ways were set aside and said to be bad by the newly rising orthodox medicine elite and the rising support for chemicals to control pests in the fields.
The incidence of disease with these two factors has changed history.
The incidence of cancer has dramatically increased. Nothing has been done to trace farm families that had heavy exposure to chemicals in the early 1900''s
Now we have so many companies saying they are changing how they fed the livestock. So, when did the government get a clue that the populace was being negatively affected?
We may look at folks in previous centuries and think "Oh, whoe is them". Whoe is us, and our children. it will take another century to straighten out the hubris of the 1900's.
A child of 43 of a family total of 53. 25-26(losing count) of 53 that have cancer. The break is on the farm. Pesticides. No one cares to evaluate. The relatives what me to shut up. They are in denial and don't want their kids to worry. They don't get surveillance. They want it to just not be discussed
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New treat. Hershey's dark chocolate and Triscuit
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