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Originally posted by Brenda:
Back and done for today. Lousy morning at mah jong. Took me an hour to break 1,000points. Oh well. It's dry here for the next few days which is okay.

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Originally posted by SIGNYM:

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Originally posted by Brenda:
Back and done for today. Lousy morning at mah jong. Took me an hour to break 1,000points. Oh well. It's dry here for the next few days which is okay.

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One good day, one bad day.

It sure is unpredictable.

But congrats on the win!


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"It may be dangerous to be America's enemy, but to be America's friend is fatal." - Henry Kissinger

Why SECOND'S posts are brainless: "I clocked how much time: no more than 10 minutes per day. With cut-and-paste (Ctrl C and Ctrl V) and AI, none of this takes much time."
Or, any verification or thought.

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Originally posted by SIGNYM:
Spent the morning feeling sorry for myself. Sister sent me a picture of her haircut, which she hates (it looks quite nice!) and all I could think was ...

I used to have a thick head of wavy hair too. Now, here I am, with fine hair, going bald (again), only this time it's not chemo and I can't do anything about it.

Yanno, of all the things that have happened to me- no breasts anymore, sever neuropathy in my feet and neuropathy in my fingers, damaged kidneys, constant sinus problems, an autoimmune disease that will kill me, and a treatment that will most likely get me a hospital - worthy infection...

The things that make me sad are my lost hair and lost sense of smell. Both used to be great. Now I have to spend inordinate amounts of time combing my hair to cover the bald spots, and I can't tell the difference between vanilla and garlic, or coffee and dog shit.

Sigh.

Well tomorrow I see my rheumatologist, who was out sick, and she looks at my strange weird rash and gives me clearance for treatment. Or not.

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"It may be dangerous to be America's enemy, but to be America's friend is fatal." - Henry Kissinger

Why SECOND'S posts are brainless: "I clocked how much time: no more than 10 minutes per day. With cut-and-paste (Ctrl C and Ctrl V) and AI, none of this takes much time."
Or, any verification or thought.

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Originally posted by 6ixStringJack:
A1C was 6.0% today and blood pressure was 126/68. Not too shabby coming off a down period. I've now officially put on 25lbs since my diagnosis last spring. Feeling good, looking even better.



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Trump will be fine.
He will also be your next President.

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Originally posted by Brenda:
Out soon for my walk on a bright sunny day. Need some groceries.

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Originally posted by SIGNYM:

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Originally posted by Brenda:
Out soon for my walk on a bright sunny day. Need some groceries.

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ad for your good weather. Good weather makes everything easier.



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"It may be dangerous to be America's enemy, but to be America's friend is fatal." - Henry Kissinger

Why SECOND'S posts are brainless: "I clocked how much time: no more than 10 minutes per day. With cut-and-paste (Ctrl C and Ctrl V) and AI, none of this takes much time."
Or, any verification or thought.

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Quote:

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Originally posted by SIGNYM:

Quote:

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Originally posted by 6ixStringJack:
A1C was 6.0% today and blood pressure was 126/68. Not too shabby coming off a down period. I've now officially put on 25lbs since my diagnosis last spring. Feeling good, looking even better.

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Those numbers would be great for ANYONE, SIX! You should be pleased with them.

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Originally posted by Brenda:
Back and done for the day. Got some clouds rolling in as it is suppose to start cooling down for the next three or four days.

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SIX: The little things I've done so far have made about half of my annoyances while mowing the lawn disappear. Should be able to address most of the other half by the time the summer is over.

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Originally posted by SIGNYM:
So Dr Rheumatologist was well enough to see me, and bc of psoriasis she tossed out the original treatment plan and gave me a new one.

Out with rituxamab infusions and steroids and Bactrim and hydroxychloroquine! In with Cellcept (pill)!

Starting Cellcept tomorrow.

I pestered her with a lot of questions. She wound up having to go thru my entire med list and weed whack it. I think she was a little fed up with me. Towards the end of the visit I asked

"So... is the plan to take Cellcept until the psoriasis goes away and then switch to Rituxamab?"

"Well, if it's working why change?"

"Uh, how will I know if it's working?"

"Because you'll see me in two months". With a bit of snark.



I worry that without the hydroxychloroquine my disabling pains will come back. But I guess we'll see what happens, bc my system has changed so much.

And I'll try not to piss her off too much.


-----------
"It may be dangerous to be America's enemy, but to be America's friend is fatal." - Henry Kissinger

Why SECOND'S posts are brainless: "I clocked how much time: no more than 10 minutes per day. With cut-and-paste (Ctrl C and Ctrl V) and AI, none of this takes much time."
Or, any verification or thought.

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Quote:

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originally posted by SIGNYM:
So Dr Rheumatologist was well enough to see me, and bc of psoriasis she tossed out the original treatment plan and gave me a new one.

Out with rituxamab infusions and steroids and Bactrim and hydroxychloroquine! In with Cellcept (pill)!

Starting Cellcept tomorrow.

I pestered her with a lot of questions. She wound up having to go thru my entire med list and weed whack it. I think she was a little fed up with me. Towards the end of the visit I asked

"So... is the plan to take Cellcept until the psoriasis goes away and then switch to Rituxamab?"

"Well, if it's working why change?"

"Uh, how will I know if it's working?"

"Because you'll see me in two months". With a bit of snark.



I worry that without the hydroxychloroquine my disabling pains will come back. But I guess we'll see what happens, bc my system has changed so much.

And I'll try not to piss her off too much.


SIX: That sounds like a huge change in your meds, Sigs. You're alright with that and trust this doctor?

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Originally posted by 6ixStringJack:
I've been playing phone tag with my aunt all week, and the one time I was able to get in touch with her she was getting ready for my uncle's retirement party yesterday.

I don't remember if I mentioned in here or not about her glucose number a couple of weeks ago. 106 after 12 hours of fasting. Way too high given those circumstances. But I didn't want her doctor to ignore it like my doctor did 5 years ago when I had 102 after 20 hours of fasting, including a full shift at work pulling around 1,200 lbs pallets of water and stacking drink packages all night.

I managed to finally get her to talk to her doctor about scheduling an A1C. I told her that she shouldn't worry about LADA like I've got or a future shooting up insulin the rest of her life, but she was likely already prediabetic if not already Type 2 with that number.

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IIRC threshold for diabetes after an 8+ -hour fast is 120. Most doctors will provide general advice about diet, weight management, and exercise but definitely not prescribe anything and probably not order any further testing.

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Sure enough, 6.0%, so well in the prediabetic range. Like me, she is not overweight. But I told her with all that soda she drinks and eating out all the time she's lucky she's always been a hard worker and on her feet all day. Who knows how long she's been in the prediabetic range, but if she'd been working an office job all these years she'd probably be 70lbs overweight and full blown Type II already.

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Good thing she got tested then!
But probably her A1C is high not bc her insulin response is inherently impaired but bc she's always jacking it up, like you said. If that's the case, it should be a snap for her to bring it down!

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We need to get her GP to get her in touch with a nutritionist team like they have at my hospital and get her educated on this stuff. In the meantime though, there are some daily choices she makes that need to be changed and/or substituted with something else. I told her right off the bat if she reduced the amount of Pepsi she drinks down to 1 can per day instead of 4 and she cuts out her one candy bar per day, that right there should get her back down into a healthy A1C range and out of Type II's way, but when she retires from that job she's also going to need to be active.

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Good advice.
I find tho that knowing what to do and doing it are two different things.
There are all kinds of impediments to doing the right thing.

For example, in my case I was eating too much bc - without realizing it- I had bad sleep apnea bc of a permanently stuffed nose. It wasn't until I started addressing my incredible sleep deficit by getting my nose fixed that I could summon enough motivation and energy to improve my diet.

So, why is she drinking so much Pepsi? Bc sugar and caffeine are what people reach for when they're chronically sleep deprived or physically tired. Does she have sleep apnea? Is she tired bc of poor circulation? For example, do her legs swell during the day?
Does she work so many hours that she doesn't have time to prepare a good meal? Is she saving money on food?

More info, by itself, doesn't change bad habits. She might need to look at "why" she does what she does and fix or change something else B4 she can change eating habits.




-----------
"It may be dangerous to be America's enemy, but to be America's friend is fatal." - Henry Kissinger

Why SECOND'S posts are brainless: "I clocked how much time: no more than 10 minutes per day. With cut-and-paste (Ctrl C and Ctrl V) and AI, none of this takes much time."
Or, any verification or thought.

Quote:

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Originally posted by SIGNYM:

Quote:

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originally posted by SIGNYM:
So Dr Rheumatologist was well enough to see me, and bc of psoriasis she tossed out the original treatment plan and gave me a new one.

Out with rituxamab infusions and steroids and Bactrim and hydroxychloroquine! In with Cellcept (pill)!

Starting Cellcept tomorrow.

I pestered her with a lot of questions. She wound up having to go thru my entire med list and weed whack it. I think she was a little fed up with me. Towards the end of the visit I asked

"So... is the plan to take Cellcept until the psoriasis goes away and then switch to Rituxamab?"

"Well, if it's working why change?"

"Uh, how will I know if it's working?"

"Because you'll see me in two months". With a bit of snark.



I worry that without the hydroxychloroquine my disabling pains will come back. But I guess we'll see what happens, bc my system has changed so much.

And I'll try not to piss her off too much.


SIX: That sounds like a huge change in your meds, Sigs. You're alright with that and trust this doctor?

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There's only one doctor I ever trusted from Day 1, and that was my oncologist. She has thought-out answers to ALL of my questions, including "which vitamins and supplements should I stop taking"?

Er, hmm. Actually, come to think of it, I double checked her answers when I got home.


I don't trust this doctor 100%. When she Rxd amoxicillin/ clavulinic acid antibiotic, I asked her if I should take it with the Bactrim, and she said she had forgotten that I was already taking Bactrim and told me I didn't need to take the amox-clav. (So I had spare antibiotic, which actually came in handy for emergency use for the dog. I just had to cut it into dog -sized doses.)

And this last visit, when she changed up the Rituxamab for Cellcept, I asked her if Cellcept played well with steroids and hydroxychloroquine. And she said "Oh I forgot you were on hydroxychloroquine. That can cause psoriasis too"
And with that and my ?? about steroids she had to do what she should have done already: evaluate medications item by item.

She's knowledgeable but doesn't re- familiarize herself with my chart before seeing me. So I have to be on my game with a lot of questions.

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Quote:

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Originally posted by Brenda:
Ears all cleaned out and other outside chores done. Having a sit down now.

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Quote:

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Originally posted by SIGNYM:

Quote:

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Originally posted by 6ixStringJack:
I've been playing phone tag with my aunt all week, and the one time I was able to get in touch with her she was getting ready for my uncle's retirement party yesterday.

I don't remember if I mentioned in here or not about her glucose number a couple of weeks ago. 106 after 12 hours of fasting. Way too high given those circumstances. But I didn't want her doctor to ignore it like my doctor did 5 years ago when I had 102 after 20 hours of fasting, including a full shift at work pulling around 1,200 lbs pallets of water and stacking drink packages all night.

I managed to finally get her to talk to her doctor about scheduling an A1C. I told her that she shouldn't worry about LADA like I've got or a future shooting up insulin the rest of her life, but she was likely already prediabetic if not already Type 2 with that number.

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IIRC threshold for diabetes after an 8+ -hour fast is 120. Most doctors will provide general advice about diet, weight management, and exercise but definitely not prescribe anything and probably not order any further testing.

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Nah. If you're between 100 and 125 after 12 hours of fasting, that's considered prediabetes and A1C tests should be mandatory followup procedure.

https://www.mayoclinic.org/diseases-conditions/diabetes/diagnosis-trea
tment/drc-20371451

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A fasting blood sugar level less than 100 mg/dL (5.6 mmol/L) is normal. A fasting blood sugar level from 100 to 125 mg/dL (5.6 to 6.9 mmol/L) is considered prediabetes. If it's 126 mg/dL (7 mmol/L) or higher on two separate tests, you have diabetes.

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My fear was that without pushing her doctor to give her an A1C, the doctor wasn't going to give her one, like what happened to me 5 years ago.

Also, like me, I wasn't confident that my aunt is going to do the right thing and follow up with the GP next year like she should. I've been trying to get her to go and have bloodwork done just to have it done ever since my diagnosis. The only reason she went to the GP right now is because she got a baker's cyst and it ruptured while she was at work around a month ago. She's probably gone longer without seeing a doctor than I did before I finally went in 2019. It might have been 30 years since she's last seen a doctor.

If you're over 100 on any blood test that required 12 hours fasting, the doctor's first question should be "did you follow our instructions and fast for 12 hours before this test, or did you cheat?". If the answer was yes, they did fast for 12 hours, an A1C test should be immediately prescribed.

Especially when the CDC estimates that nearly 100 Million Americans above the age of 18 already have prediabetes.

https://www.cdc.gov/diabetes/php/data-research/index.html

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An estimated 97.6 million adults aged 18 years or older had prediabetes in 2021 (Table 4). Among U.S. adults aged 18 years or older, crude estimates for 2017–2020 were: 38.0% of all U.S. adults had prediabetes, based on their fasting glucose or A1C level.

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Sure enough, 6.0%, so well in the prediabetic range. Like me, she is not overweight. But I told her with all that soda she drinks and eating out all the time she's lucky she's always been a hard worker and on her feet all day. Who knows how long she's been in the prediabetic range, but if she'd been working an office job all these years she'd probably be 70lbs overweight and full blown Type II already.

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Good thing she got tested then!
But probably her A1C is high not bc her insulin response is inherently impaired but bc she's always jacking it up, like you said. If that's the case, it should be a snap for her to bring it down!

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Yeah... And if she does right with her diet going forward we'll probably never know for sure.

I don't imagine there will be any problems bringing it down though. I told her if ever she wants to bitch about how shitty life is with her new diet, she can give me a call and I can tell her some real horror stories to make her feel better about her situation.

Quote:

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We need to get her GP to get her in touch with a nutritionist team like they have at my hospital and get her educated on this stuff. In the meantime though, there are some daily choices she makes that need to be changed and/or substituted with something else. I told her right off the bat if she reduced the amount of Pepsi she drinks down to 1 can per day instead of 4 and she cuts out her one candy bar per day, that right there should get her back down into a healthy A1C range and out of Type II's way, but when she retires from that job she's also going to need to be active.

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Good advice.
I find tho that knowing what to do and doing it are two different things.
There are all kinds of impediments to doing the right thing.

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Sure. I knew drinking was terrible for me, especially in the excess I was doing it, but that didn't stop me.

I'm going to be telling her that she needs to give herself cheat days. She's never going to stick to a diet that works if she cuts out everything she enjoys all the time. You have to have something to look forward to.

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For example, in my case I was eating too much bc - without realizing it- I had bad sleep apnea bc of a permanently stuffed nose. It wasn't until I started addressing my incredible sleep deficit by getting my nose fixed that I could summon enough motivation and energy to improve my diet.

So, why is she drinking so much Pepsi? Bc sugar and caffeine are what people reach for when they're chronically sleep deprived or physically tired. Does she have sleep apnea? Is she tired bc of poor circulation? For example, do her legs swell during the day?
Does she work so many hours that she doesn't have time to prepare a good meal? Is she saving money on food?

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She eats out all the time. Only recently she's started finding the time to cook at home just because of the prices of everything. The rent in her apartment is going up another $400 next year. (It used to be church owned cheap living for seniors, but they abandoned that during covid when they didn't have the regular donations coming in to make it feasable anymore, so her rent went from $400 a month last year, to $600 this year and it goes up to $1,000 per month starting in February). She's barely breaking even right now, but I told her that on the money she spends eating out alone she'd save more than the rent is going up next year.

I never hear her complaining about sleep problems. She's really not much of a complainer though.

I dunno... Could be that drinking all that pepsi and eating bullshit is her drug of choice. Before I started drinking heavily around 2008/2009 (the first time I let drinking get out of control), I was drinking around 2 liters of Pepsi everyday. When I was a kid and through high school I drank around 2 liters of Mountain Dew everyday.

But at least she eats out at good places. She's not filling her gut with barely-food like McDonalds or Burger King.

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More info, by itself, doesn't change bad habits. She might need to look at "why" she does what she does and fix or change something else B4 she can change eating habits.

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Yeah. We'll see.

I think this should be pretty easy for her to overcome after the first few weeks of forming new habits starts to take hold. I think she has a lot of things she could change to get that number where it needs to be, with plenty of wiggle room to still consume crap and get the number down, so it shouldn't be too difficult.

--------------------------------------------------

Trump will be fine.
He will also be your next President.

Quote:

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Originally posted by SIGNYM:
I update my list every time, otherwise their computer nags my email forever! Unfortunately they don't allow mere patients to remove meds from the med list, or remove conditions that have been resolved from the "conditions" list. And some edits that I've tried to make, like xfering care from a doctor who is no longer there, or someone I might have seen on a walk-in, to my regular doctor... well, those edits don't "stick".
I understand why they don't want patients monkeying with their database, but it just puts a higher burden on the staff.

It's like our pharmacy's "automated" system. I've tried using it in both voice recognition and keypad entry mode, and sometimes part is captured (voice) or nothing is (keypad). So much for helping out the pharmacy techs!!

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"It may be dangerous to be America's enemy, but to be America's friend is fatal." - Henry Kissinger

Why SECOND'S posts are brainless: "I clocked how much time: no more than 10 minutes per day. With cut-and-paste (Ctrl C and Ctrl V) and AI, none of this takes much time."
Or, any verification or thought.

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Quote:

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Originally posted by SIGNYM:

Quote:

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Originally posted by Brenda:
Ears all cleaned out and other outside chores done. Having a sit down now.

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Yay!

-----------
"It may be dangerous to be America's enemy, but to be America's friend is fatal." - Henry Kissinger

Why SECOND'S posts are brainless: "I clocked how much time: no more than 10 minutes per day. With cut-and-paste (Ctrl C and Ctrl V) and AI, none of this takes much time."
Or, any verification or thought.

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Quote:

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Originally posted by Brenda:
Back and in for the day. Good day wandering around with my friend and talking. She loved the birthday present I got her.

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Quote:

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Originally posted by SIGNYM:

Quote:

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Originally posted by Brenda:
Back and in for the day. Good day wandering around with my friend and talking. She loved the birthday present I got her.

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That's great, BRENDA!


-----------
"It may be dangerous to be America's enemy, but to be America's friend is fatal." - Henry Kissinger

Why SECOND'S posts are brainless: "I clocked how much time: no more than 10 minutes per day. With cut-and-paste (Ctrl C and Ctrl V) and AI, none of this takes much time."
Or, any verification or thought.

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Quote:

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Originally posted by SIGNYM:
So, SIX.

I was going to post that I doubted you had a raging case of diabetes long before you were ever dx'd. But I looked it up, and, like a lot of things biological there is variation!

So, apparently, for MOST people LADA kind of behaves like a switch: it's off, until for some reason it's on and requires insulin.

But I looked it up, and apparently somewhere between 2- 12% of people dxd as Type II are actually mis-dxd LADA, and that, for those people, LADA can be controlled with regular diabetes meds like metformin and glipizide.

Who knew???

But FWIW, IMHO even if you had been dxd and txd early it might not have stopped the progression to insulin, just possibly avoided bone loss in your jaws. (Also, didn't you say your mom had the same?) Since no eye or kidney damage all of that exercise at work may have saved you from serious consequences.

So even tho doctors may have dropped the ball, with everything that happened you might have wound up in the same place anyway.

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Originally posted by Brenda:
Got back after 5pm today and nothing good happened at mah jong.

On the other hand the neurologist I saw at my local hospital said that my seizure meds aren't really working any more and doesn't want to up the dose of them because of side effects. So new prescription for a low dose add on. Will get it filled on Friday.

Will follow up with him again in a few months.

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Quote:

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Originally posted by 6ixStringJack:

Quote:

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Originally posted by Brenda:
Got back after 5pm today and nothing good happened at mah jong.

On the other hand the neurologist I saw at my local hospital said that my seizure meds aren't really working any more and doesn't want to up the dose of them because of side effects. So new prescription for a low dose add on. Will get it filled on Friday.

Will follow up with him again in a few months.

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Good luck with the scrip change, Brenda.

Is the intention to see how you handle the new, smaller does add-on and possibly transition over to it completely if you find it agreeable?

--------------------------------------------------

Trump will be fine.
He will also be your next President.

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Quote:

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Originally posted by Brenda:

Quote:

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Originally posted by 6ixStringJack:

Quote:

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Originally posted by Brenda:
Got back after 5pm today and nothing good happened at mah jong.

On the other hand the neurologist I saw at my local hospital said that my seizure meds aren't really working any more and doesn't want to up the dose of them because of side effects. So new prescription for a low dose add on. Will get it filled on Friday.

Will follow up with him again in a few months.

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Good luck with the scrip change, Brenda.

Is the intention to see how you handle the new, smaller does add-on and possibly transition over to it completely if you find it agreeable?

--------------------------------------------------

Trump will be fine.
He will also be your next President.

---

Thanks. I will need it as I am nervous with new meds.

I'm not sure. I forgot to ask him that but I do have to back and see him in a few months. So I will be sure to ask him then.

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Originally posted by SIGNYM:

Quote:

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Originally posted by Brenda:

Quote:

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Originally posted by 6ixStringJack:

Quote:

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Originally posted by Brenda:
Got back after 5pm today and nothing good happened at mah jong.

On the other hand the neurologist I saw at my local hospital said that my seizure meds aren't really working any more and doesn't want to up the dose of them because of side effects. So new prescription for a low dose add on. Will get it filled on Friday.

Will follow up with him again in a few months.

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Good luck with the scrip change, Brenda.

Is the intention to see how you handle the new, smaller does add-on and possibly transition over to it completely if you find it agreeable?

--------------------------------------------------

Trump will be fine.
He will also be your next President.

---

Thanks. I will need it as I am nervous with new meds.

I'm not sure. I forgot to ask him that but I do have to back and see him in a few months. So I will be sure to ask him then.

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I start by saying THE FOLLOWING IS NOT MEDICAL ADVICE. AS ALWAYS, TALK TO YOUR DOCTOR.

As usual, I question ALL of our doctors, and even our dog's vet! And I've had years and years and years of experience with a hard to treat seizure syndrome.

So, did the doctor explain to you WHY he thinks med not working anymore? I don't recall you saying you had an EEG recently, so this can only come from you reporting frequent auras and/or brief blackouts.
Or does he assess that your current med dose is causing too many side effects?

It's important to know what his (or YOUR) "metric" is because he, or you- or preferably BOTH of you- need to be able to tell if the new drug is "working" OR NOT.

It's not necessarily as clear cut as with SIX and LADA, where the treatment success can be measured in one number (A1C) and checked with some known physical exams (blood test, retinal exam etc).

Altho, having tried- literally- a dozen meds, and gone thru that ramp up/ wean down cycle many times, I will say that in my experience, if you have to think really hard to decide whether a med is working or not, IT'S NOT WORKING. I accept nothing less than definitive results.

PLEASE CLARIFY WITH YOUR DOCTOR WHAT HE'S LOOKING AT WHRN HE ASSESSES YOUR NEW MED. PLEASE SETTLE IN YOUR OWN MIND WHAT RESULTS YOU WILL ACCEPT BC YOU WILL HAVE TO REPORT BACK TO YOUR NEURO.


AFA change of meds, your current med interacts primarily with sedatives of various kinds - alcohol and cannabis (not a problem for you), benzodiazepines etc. by making you sleepy or uncoordinated. It also interects with Tegretol (carbamazepine) by increasing the possibility of Tegretol side effects (double vision, uncoordation) but IIRC it doesn't interact seriously with other meds. So since the new med is an add-on you should be pretty safe with the combo.

The other thing you need to BOLO is new med side effects.

MAKE SURE YOU KNOW WHAT THE DOCTOR WANTS YOU TO BE ON THE LOOKOUT FOR IN TERMS OF SIDE EFFECTS, EITHER OF THE NEW MED OR THE NEW MED IN COMBO.

Also, I assume he has left you with clear instructions on how to increase yiur new med over time.

And finally, it's always good to have a "plan C". Sometimes people can be reluctant to decide that new drug/ treatment isn't working bc they feel there are no alternatives. There are almost always other options. So at your next oppty, ask your doctor what his plans are if this new med doesn't work. It helps to have them thinking in a forward direction.

I hope this new med produces stellar results!




-----------
"It may be dangerous to be America's enemy, but to be America's friend is fatal." - Henry Kissinger

Why SECOND'S posts are brainless: "I clocked how much time: no more than 10 minutes per day. With cut-and-paste (Ctrl C and Ctrl V) and AI, none of this takes much time."
Or, any verification or thought.

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