Kittie's Journal

[Kittie]

You read my mind! Only I was thinking try only reducing 1/4 dose or less. Not medical advice, as I'm not qualified. Just what I was thinking.

Well... I'm over here practicing medicine and medical advocating without a license, so...laughing at myself!!! I'm composing a letter to my insurance, explaining the maintenance iis as bad as the problem, so I'd like a decision based on my unique situation. (I'm sure that will be filed in the trash can!)

Due to the long half life of Klonopin, you won't likely know how you're really reacting to the reduction until about 3 to 7 days after the change. The experience, when it hits, may take you off guard. It gets me every time, even now that I expect it.

Doctors! Lol

Wow! I had no idea it stayed in the body that long. I take it at midnight and am up at 4am, perfect timing. No alarm clock needed! If I don't get busy and start my day, my body reacts as though I'm sleeping and I feel anxiety wash over me. Activity beats cortisol!

Thanks for the heads-up! That gives me a better clue of what I'm in for! Oh, boy....

 

[Kittie]

I hear that. The only good thing I have to say about injuring my hips in Portland last year was that I didn't do it just 3-4 months earlier in rural central Oregon where PT was an hour away and specialists were 2 hours away. I lived there for 14 years but I could not have afforded the gas to get to all my appointments, because on top of everything else, we really needed to drive an AWD SUV to live out there in winter.

And it's also hard when your comfort zone is the country and you have to travel to a more populated area to see a doctor or worse yet, to see many doctors.

I totally understand that! Dealing with all the city traffic un-nerves me! I get normal anxiety the night before such a trip and poor sleep. The weather can make the trip through the canyon treacherous. 15 minutes late and they cancel...after all it took to get there. I've smartened up and leave the day before so there's less stress, I'd rather be truck camping and be close by so nothing goes wrong and if it does, there's time to deal with it.

My husband and I are still seeking a viable retirement idea because of this. He likes the country but I don't want to watch him die on our kitchen rug because the ambulance high-centered on an elk carcass. You know?

Yep, I get it! There's pros and cons to every location. No place is perfect, unfortunately. I hope you both find the ideal location that makes you happy!

 

[RussellSue]

I've smartened up and leave the day before so there's less stress, I'd rather be truck camping and be close by so nothing goes wrong and if it does, there's time to deal with it.

I used to have to do that, too. Back in the days when you could sleep in a Wal-Mart parking lot, it wasn't so bad. I slept there a few times. It wasn't necessarily what I would have chosen but the lighting made it a little less scary than a lot of places. Course, some of the neighbors made it scarier but no perfect locations, right?

My mom's Dr here, at her first visit, apologized for being late to her appointment because he was delivering a calf in distress!

Haha! That is a sign of a good doc, though - concern for living things.
My mom's favorite was a doc named Rusty Dodge. He was at the clinic just before I moved to the area.

Yep, I get it! There's pros and cons to every location. No place is perfect, unfortunately. I hope you both find the ideal location that makes you happy!

Me too, thanks! One of the big ones is that he has double-vision and his father's double-vision got worse as he got older. And while I don't mind driving him around, he really wants to have access to some level of public transit but doesn't really like "the city." We have some ideas but have discovered that there will have to be a medium somewhere between 5,000 and 60,000 people in the population. We have managed to whittle down to that level of specificity through a number of recent moves. Portland was WAY too big for him (but I loved it), Santa Fe was too big for him (but I liked it), and he likes it here in this village of 1,500 even without a bus, but it is just too small for me. We'll figure it out, I hope. But yeah, there are no perfect places. That is for sure.

Just curious - do you live in the Ozarks? My aunt lives in the Ozarks. She loves it. The growing season is so much better than anywhere I have lived. I should keep myself in the desert because of ear problems but I can appreciate green stuff quite a bit.

 

[RussellSue]

Dealing with all the city traffic un-nerves me!

My mom, too. She has a terrible time with cars and can't sleep before a trip. I have a terrible time with her driving, so we travel well together with me behind the wheel, always.

It's hard when you don't do it very often. I had a really hard time for a while but I used to force myself to drive to the city at least monthly and I got over it for the most part. Now, I drive all the time, all over but I still have a REALLY hard time in the thick of cities. I'll park at a park and ride and take the bus if I can. It's just not worth it if you aren't used to it.

When we were driving to NM from OR, we hit Salt Lake City while it was getting dark with a bunch of road work detours on the freeway with no street lights. I had tried to get off the road before it got dark because I have night blindness but I didn't make it in time. I thought we were going to die at least 25 times on that stretch of freeway. That was dumb. I will not do that again.

Driving is hard. There's just no getting around that. We're not supposed to move that fast, especially when everything around us is also moving that fast.

Whatever happens, be careful out there! Camp often!

 

[Freida]

I had no idea so many others were in this boat, but here we all are trying to stay afloat.

So the idiots who run the VA decided that they would no longer allow opiates. For anything. At all
So the people out there who have been using them 3 and 4 times a day for years, because the VA had been giving them out like skittles? Were all denied their next refill.

I've seen the letter -- it said the VA was supposed to help wean people off them and start working on options for pain management
But nope.

Most of the centers just stopped giving them.

The vet blogs blew up with story after story of people who were suddenly forced to go cold turkey, going thru horrific withdrawals and getting zero help from the VA
And yep - several suicides I know of because of it.

My VA doc even told me -- keep your civilian doctor because I'm not allowed to perscribe anything but tylonal and motrin.

I am so lucky I've found a doc in the real world who is able to work with me in all aspects of self care - including, when necessary, pain meds.

 

[joeylittle]

Other medications made me feel worse all day long and side effects were awful. I have no long term solution. It took such a long time to figure out the right medication and dose. Once they got it right, my life improved to nearly normal.

I hear you about poor access to specialists. But it sounds like you hit upon Klonopin as the solution to your adrenal issues maybe 10+ years ago? More?

There are always new drugs being developed, and older drugs having their dosage scheduling refined. It doesn't sound like it'll be as simple as removing Klonopin and using supplements; it would be more likely that you'd need to replace the Klonopin with something, and that would open up another trial and error period. If you think you'd like a doctor you're more comfortable with, or you want to wait til you can access a renal specialist - those are both very reasonable options to suggest.

And just to make it more complicated - if you haven't been increasing your Klonopin dose over time? It's always possible that your body eventually got trained to respond to the nightly pill as a placebo effect - since that's one of those drugs that typically loses effectiveness over time, and frequently needs to be increased. The really fascinating thing about the placebo effect is - it's a real thing. There's a big mis-perception that it means "nothing actually happened"....but that's not true. Placebo works a few different ways, depending on the context - the one relevant to you is: your body can become so accustomed to the mechanism of action (of a drug) that it begins to replicate the results all on its own. Consistent timing is a huge part of that, and when you describe things working like clockwork, it suggests there's a small possibility the Klonopin itself isn't doing anything.

The problem is - there's no good way to really test the theory, because you can't switch out your pills on yourself without knowing what you're doing. And of course, it could be totally not that at all. It's just interesting to keep it in mind, when looking at replacing any medication you've been taking for a very long time, especially when it's a drug that the body develops tolerance for.

 

[Kittie]

So the idiots who run the VA decided that they would no longer allow opiates. For anything. At all
So the people out there who have been using them 3 and 4 times a day for years, because the VA had been giving them out like skittles? Were all denied their next refill.

I've seen the letter -- it said the VA was supposed to help wean people off them and start working on options for pain management
But nope.

Most of the centers just stopped giving them.

The vet blogs blew up with story after story of people who were suddenly forced to go cold turkey, going thru horrific withdrawals and getting zero help from the VA
And yep - several suicides I know of because of it.

My VA doc even told me -- keep your civilian doctor because I'm not allowed to perscribe anything but tylonal and motrin.

I am so lucky I've found a doc in the real world who is able to work with me in all aspects of self care - including, when necessary, pain meds.

Wow, this blows my mind! There's something going on with Drs and drugs....not just me. I was taking it personally, but not after reading this.

I'm so sorry for all the people who are being hurt by this. My heart breaks for them...so sad. Very strange the sudden attitude of doctors.... hmmmm...

 

[Kittie]

I hear you about poor access to specialists. But it sounds like you hit upon Klonopin as the solution to your adrenal issues maybe 10+ years ago? More?

It was 2016 when the renal specialist gave me Klonopin and since it worked, the other medications were stopped. I tried Xanax, prozac and psychiatric drugs that did nothing for the elevated cortisol. Klonopin fixed it.

There are always new drugs being developed, and older drugs having their dosage scheduling refined. It doesn't sound like it'll be as simple as removing Klonopin and using supplements; it would be more likely that you'd need to replace the Klonopin with something, and that would open up another trial and error period. If you think you'd like a doctor you're more comfortable with, or you want to wait til you can access a renal specialist - those are both very reasonable options to suggest.

There may be something new developed to control cortisol...hopefully not so new they aren't yet aware of the negative effects...those that end up as lawyer commercials.

And just to make it more complicated - if you haven't been increasing your Klonopin dose over time? It's always possible that your body eventually got trained to respond to the nightly pill as a placebo effect - since that's one of those drugs that typically loses effectiveness over time, and frequently needs to be increased. The really fascinating thing about the placebo effect is - it's a real thing. There's a big mis-perception that it means "nothing actually happened"....but that's not true. Placebo works a few different ways, depending on the context - the one relevant to you is: your body can become so accustomed to the mechanism of action (of a drug) that it begins to replicate the results all on its own. Consistent timing is a huge part of that, and when you describe things working like clockwork, it suggests there's a small possibility the Klonopin itself isn't doing anything.

That could be a possibility. If I forget or deliberately skip it, my body knows at 4am. They're welcome to try a placebo. I'd bet the cortisol would go through the roof, but I'd try if they want to study me.

The problem is - there's no good way to really test the theory, because you can't switch out your pills on yourself without knowing what you're doing. And of course, it could be totally not that at all. It's just interesting to keep it in mind, when looking at replacing any medication you've been taking for a very long time, especially when it's a drug that the body develops tolerance for.

I'm always open to options! I was happy feeling normal in the mornings instead of panic. I think removing the renal adenoma would remove the problem and when I get past the benzo withdrawal, I'll be on a happier path.

 

[Kittie]

I used to have to do that, too. Back in the days when you could sleep in a Wal-Mart parking lot, it wasn't so bad. I slept there a few times. It wasn't necessarily what I would have chosen but the lighting made it a little less scary than a lot of places. Course, some of the neighbors made it scarier but no perfect locations, right?

Hotel parking lots are one of my choices. If security says anything about me sleeping in the vehicle, I just say I can't sleep with hubby's snoring! They accept that and don't bug me, haha!

Haha! That is a sign of a good doc, though - concern for living things.
My mom's favorite was a doc named Rusty Dodge. He was at the clinic just before I moved to the area.

I like that name!

Me too, thanks! One of the big ones is that he has double-vision and his father's double-vision got worse as he got older. And while I don't mind driving him around, he really wants to have access to some level of public transit but doesn't really like "the city." We have some ideas but have discovered that there will have to be a medium somewhere between 5,000 and 60,000 people in the population. We have managed to whittle down to that level of specificity through a number of recent moves. Portland was WAY too big for him (but I loved it), Santa Fe was too big for him (but I liked it), and he likes it here in this village of 1,500 even without a bus, but it is just too small for me. We'll figure it out, I hope. But yeah, there are no perfect places. That is for sure.

That's hard, finding what works best for you both. I'll keep hoping you find it!

Just curious - do you live in the Ozarks? My aunt lives in the Ozarks. She loves it. The growing season is so much better than anywhere I have lived. I should keep myself in the desert because of ear problems but I can appreciate green stuff quite a bit.

I wish I was in the Ozarks! I came from the Smokies originally but now Utah is home. When I was there, all I wanted to do was leave. After I left, all I want to do is get back! I'm homesick!

 

[Kittie]

10:30pm
I'm rather pissed. That Asshat Guy is sleeping in his truck in my driveway. I'm half tempted to call the cops, but after the recent break-in, they might see a strange vehicle and pay him a visit.

I got a message earlier today saying he was coming over because I had a surprise in my mailbox and he wanted to go with me to the post office. I had a stack of bills to mail and already got surprised, shocked was more like it. A post card mailed from Sioux City with a picture on the front that said United Flight 232 Memorial Monument... on the back he wrote that he took a short flight from there and back and hoped he landed where I did, that he was thinking of me. I don't know if he thinks he's being funny but he has too much time and money to waste. I haven't responded to him for a while but he carries on anyway. He let me know he reserved a truck to move my stuff. A couple of weeks ago, I told him not to include me in his plans. I've been clear I'm not going with him.

When he let me know he was on his way to my house, I put newspaper over the garage windows to hide my vehicles and to look more convincing, I scribbled a note and and stuck it in the screen door saying call Ann when I get home. I don't know anyone named Ann, I must be reducing to his level. I'm just trying to deter him. He's furious that I'm "not home". What's weird is he says my phone is at my house, so where am I? I know he's a tech geek, but he couldn't have put a tracking device in my phone, it was shipped directly to me. Creepy! Really creepy watching him on the security camera when he threw the note down on the porch! Anger streak! So glad I cut ties with him! No doubt, he's bad news.

He also believes in UFOs, I wish he'd get in one and go away! The latest message... "I hope you still want me. " Sad. I'm the last person to reject anyone but this is too much drama. If he gets in, the house, I have a surprise for him- bear spray.

It's below freezing tonight, I hoped he'd get cold and go...but the furballs and I can stay holed up for 3 months, I can outlast him. This is ridiculous! I might report a suspicious vehicle in the morning if he's still there. What gets me is...how does he know where my phone is?? Then I can't help but wonder if he sees what I read and write? If I had kept any secrets, they wouldn't be secret anymore! Very strange dude.

For someone seeking a peaceful, quiet life, mine has been anything but, lately. From a rude Dr, to thieves to a guy with bigger problems than I have. Peace Now!!

 

[ladee]

Please be careful Kittie. Let us know if he's still there in the morning and what happens. This guy has some major problems. Stay safe.

 

[Kittie]

Please be careful Kittie. Let us know if he's still there in the morning and what happens. This guy has some major problems. Stay safe.

I'll be fine, I'm just P.O.'d and had to rant. He's more disturbed than I thought and my heart feels JOY for the decision I made when it began to feel strange. No worries!