INSOMNIACS place to talk in the wee hours

Smaarty

for shepkitty, hope you got some rest.

This is for Enerva (I know you lurk)!!

Smaarty

DGD posted a new pic of Evie. See her itty bitty whale spouts? And she picked out her outfit.

Lookforward

love the pigtails

kathindc

Aww, Evie is so precious.

magdalene51

Here ya go. Kittens

magdalene51

Lookforward

A engagement picture taken in Banff on Aug 6, it is photobombed by a ground squirrel.Love the kitten pictures.

WenchLori

Just sayin'!!!!

WenchLori

I decided it was time I got something done around here today. I picked the pool and it kicked my butt!

I shut the pump down, removed dirty filter cartridge, replaced with clean cartridge emptied about 6" of water out of the pool to get it to a normal level. Cleaned the skimmer basket and the basket from the center pool drain. I got everything put back together, switched on the pump and all I got was just a hum. After several tries and flipping the breaker switch, still just a hum. I got my trusty pliers out that I use to turn the drive shaft thingy but no luck. Honey!!! I broke the pool! Can you fix it please?!?! I also had to run and pick up some muratic acid to zap the pool filters, maybe they just need to set over night to get all of the tiny microscopic crap dissolved? Who knows?

While at the hardware store a fella behind me asked if I was going to use the muratic acid to make cocktails? A fella behind him asked "what do you care? Your not invited anyway!" When I turned around to see the clowns standing behind me there were about 5 guys and all from my church! And, the girl (Lorie) at the cash register sits next to Mom and I in church! They all gave me gentle hugs and they made my day!! I'm hoping I feel up to church this Sunday! 😎

susan3

Evie is so cute:)

Bone scan good..lots of degenerative issues. But that I knew..have been having a lot more pain in the exact spots they said were deteriorating. Any least now they won't ask me why I want pain meds.

You did a lot today wrenchie.....rest up girly

JWoo

hey ladies!

post op today: chest drains out, still have 2 bottom ones, cleared to make the 9 hr ride home! i'm so excited to get back to my own space. shortly after i posted the other day- things got moving.. scared me a little feel so much better now.

Junie, your hip sounds like it wants to samba all on its own!

Shep, sorry you've had to live with pain so much of your life. (gentle hugs)

Sas- thanks for thinking of me

BF is doing much better these days. still has a little issue with sight/sound and his shoulder, but overall doing just fine.

love you ladies!

susan3

jwoo. Yeahhhhhhhh you get to go home.

Jazzygirl

Wildtulip- not offended at all. I am a busy self employed consultant so when I don't pop in right away, it is usually because of work stuff.

My BFF and I have a great relationship and she has stuck by me through the worst of things and helped me in more ways than I can tell. I think it is hard for her to talk to me about things because she was scared for me and worries about the future. Her pets are like her children so I get that too. Like I said, once you have it, everyone will immediately tell you the story about another.

Most recently, we talked right after I went to a funeral for a friend of mine who lost his battle with a rare head and neck cancer. I mean it was right after I left the funeral, she happened to call and there it was about the dog's cancer being back after I told her I was just leaving the funeral for a friend that passed from cancer. Well, we all have our struggles around this stuff, right? I am not upset with her, just mindful of our conversations sometimes.

Anonymous

Kathi, Shep and Loverly, thank you for the kind words about my poem.

Mags, I love the pain chart!

Shep, I did not notice a meltdown, but I think anyone on here deserves to have one now and then. I hope you are having a better day today. I have written on and off since I was a child, but typically go back to it in times of distress. I don't always finish them, but it helps to get my thoughts out. A gas mask for kitty may be a good idea, but that wouldn't help with the hives. Maybe I should consider allergy shots!

Junie, I hope your appointment went well today. It's smart to pack a suitcase, especially given the distance! When I was going through chemo and ended up in the hospital one night. After that I packed a "ready bag" with some things ready to go to the hospital, just in case. I LOVE the soft kitty picture. My kids and I are fans of the Big Bang Theory and I know the song by heart. My son has mild autism, and although it's not talked about I believe the Sheldon character has Aspergers. There are times when I'm watching the show and can't help but think, "this is SO my life!"

Yesterday my daughter had a check up with one of her specialists..Phys Med Rehab. She assesses my daughter's muscle tone (my daughter has cerebral palsy). Anyway, her muscles looked good, so no treatment needed at this time, and we don't have to go back for 6 months.

I hope everyone is having a peaceful day.

GracieM2007

Shep, I really didn't realize you had had a meltdown, but if you did, it would be totally ok with me I am beyond judging anyone else when I melt down at every turn I'm so sorry you dealt with JRA. My oldest granddaughter has that also, she was diagnosed at 1 1/2 years old, and is not 13, will be 14 in October. She was in remission at one point for about two years, but hasn't been since. It's a miserable thing to deal with for anyone. Arthritis runs in our family, my mother had it and almost every one of her siblings. I don't have JRA, but I do have Lupus, which is related. I also deal with Fibro, it goes hand in hand with the rhuematoid type diseases. When the onc asked me if I had been having symptoms, my first thought was "how would I ever know if I had or not"? I have pain, yes, sometimes quite a lot, but I wouldn't have known it from anything else at this point. Anyway, I hope you are feeling a little better tonight and your pain level is down a bit.

Thanks to everyone for all of the warm welcomes. I've been watching alot of the Olypmics, which I think is an avoidance mechanism. I'm just still blown away by the results of my bone scan. Does everyone go through a period where you just think it has to be wrong, there has been a mistake made somewhere?

Smaarty

ok, last baby pics for awhile.

My DD, about 9 mos old, on left,her DD, about 8 mos, in middle and Evie. They all have the same nose!

GracieM2007

Smarty, what a beautiful set of baby pics😊

No sleep for me tonight! Of course it is a night where I need to sleep because I have to get up in the morning and take care of four grandchildren . So do you think I can get to sleep ??? Of course not !!!!!! Tossing and turning, lights on lights off !! Grrrrr...

Anonymous

Ack! Just finished a really nice long post and lost it!

Quick summary - Kittens, PJ puppies, Cowboys and baby pics make everything better. I'm hoping JunieB is being put back together properly and is comfy. Happy that Jwoo is home. Hoping Wenchie didn't over do.

I cherish you all and wish lovely dreams and peaceful sleep for each of you

JunieB

This contraption is what I'll be wearing for the next 6-8 weeks. Being fitted for it this afternoon.

The P.A. said that they are concerned that if they go straight to surgery, the risk of infection gets higher with each surgery. She also ordered specific bloodwork to check if I have an infection already. She said that a hip can start to dislocate if there is an active infection. I sure hope not! She wanted me to put the leg immobilizer back on, but I told her that it causes me more pain and that I'd prefer the brace I pictured above. Had one of these in 2000 when they reconstructed my left hip. They are bulky & uncomfortable, but a lot better than the leg immobilizer. Leg immoblizer stiffens the entire leg, where as the abduction brace allows motion in the knee and lower leg. Will see Ortho in 4 weeks.

After this week I feel like I've developed PTSD from my hip dislocating so often.

Mags - Love the pic of the puppy in the onesie! It definitely made me smile.

Loverly - I printed a copy of the pic with the horse with the zebra hip and gave it to the P.A. She did chuckle.

Shep - You have RA on top of the BC? You poor dear. And you manage to maintain your spunkiness.

Wenchie - Glad you are getting out and about, but do take care. Will you be doing P.T. to get your ROM back? It's always nice to have the support of our church family. I received texts from one woman once 2 weeks ago, but other than that no communication what so ever from the people at the church I've gone to for 9 years. Bummer! But also very telling.

So, is the pool back in working order? When will you be able to enjoy it yourself?

Smaarty - Cute baby pics.

I'll check back later. Hope you all have a good day.

Wren44

Wish I had a video of the "wobbly" kittens at the rescue yesterday. I think they're extra cute. They try so hard to do what other kittens do, fighting and playing with each other. One was long-haired gray and the other long-haired orange. As I was cleaning their cage it was obvious that hitting the litter box was a problem. They're learning and will probably master the art eventually. I saw a video of a wobbly kitten coming down stairs in a series of controlled falls. The owner said she got really mad if you tried to help.

sas-schatzi

Hi, Thanks for the pep talk about the depression thingy. Generally, it's not horrible, but damn it's a pisser b/c I should be just the opposite. First time in 7 years without physical trouble & add two more to that with work troubles so that's 9 years. I should be on cloud nine. Stupid scenario. Anywhooses, thanks.

Shep, When I get to the hysterical level the only thing that works is 20mg of Valium and down for x hours. Only has happened a few times in recent years. Once the cycle of spasm is broken for me, it goes back to it's old ways. Which is doable. Any chance of you swimming in a warm water pool? It has made a world of difference for me. I do two types of backstroke and one very modified breast stroke. The whole spine is the best it's been in years.

A side effect of the one back strokes is strengthened pelvic floor muscles. i.e like kegels. I had reached the point that all I had to do was think peeing and boy I'd need to move fast. Didn't know this particular stroke had that effect. I don't think it's written anywhere either. I tried a few years ago to find the stroke on line and couldn't. Learned it as a kid. If you can get to a warm water pool I'll talk you through how to do it. All a cold water pool does for me is cause more spasms.

Tulip, love the poem

Kathy, yes, my dearest friend & hubby is on the guest list now. The tasting and table presentation sounds wonderful. The food sounds wonderful and the chef's talking with you . It's going to be quite a formal wedding isn't it?. I'll ask the kids if their venue does the same thing with the tastings. Good luck with Hubby Hahahaha

Mags I'm going to add this pain list to my pain thread. It's a goody.

sas-schatzi

I revised some of the info in the description of chest pain ---stable and unstable angina. Here's the link

https://community.breastcancer.org/forum/136/topics/839123?page=4#post_4778370

sas-schatzi

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

sas-schatzi

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

sas-schatzi

Shep why haven't you got a pain pump? Should have. What's up with that?

Anonymous

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!

JunieB

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.

sas-schatzi

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

sas-schatzi

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.

sas-schatzi

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.