Waterfall: introduction

[Waterfall]

So. Update time. 

Sometime I find it so hard to describe what's all going on. 

 

To start with, I guess I should say I survived camping. 

It actually went pretty good overall. I enjoyed myself for most of it. 

Some parts of it were tough, but I was pleased with how well it went. 

 

On the whole I've thought I've been doing better lately. 

I've managed to get out more often, and for longer, with less trouble. 

 

But somehow at the same time, I've had a lot more symptoms lately. 

The last couple days the worst has been chest/throat tightness. 

As well as some heart pounding/palpitations. 

Oh, and for the last week or two the cortisol spikes have been bad. 

Some of the worst that I've had. 

 

Funny, that I had them just before camping, and when I got back, 

but not a single one while I was gone camping. 

Not sure what to think of that. 

 

On top of those, I've also had nightmares, tingling in my lips, fingers, 

and legs, burning in my back and limbs, especially in the morning, 

a return of a strong sensitivity to pressure, oh, and nerve pain in my

mouth again. So many of these I thought were gone. Sudden hot 

flashes, or episodes of feeling cold. Headaches, neck ache, shoulder

ache, back ache. Aches and weakness in my arms. Urinary irritation

worse than I've ever had before. Moodiness. Irritability. Periods of 

frustration and despair, which are sometimes interspersed with 

feelings of hope, and almost excitement about projects or things 

to do, which only makes it harder next time I feel down, because I 

lose hope that I could actually do those things.  

 

I'm pretty discouraged right now with a lot of these. 

I thought so many of them had gotten better, or gone away. 

And now so many of them are back right now. 

I keep trying to tell myself I must have gotten some windows, 

and this must be the wave, or waves. 

It just goes up and down so much, sometimes I don't know

which way is up anymore!

I have to remind myself sometimes that it -has- been worse. 

At least, in some ways. 

Sometimes It doesn't feel so much like it. 

 

When I feel better, I wonder if it's finally time to begin a very slow taper, 

so I can finally get off this horrible drug.  

But when I feel worse, I think, if I felt any worse than I do, could I handle it?  

 

Oh, I forgot one symptom I've had again lately. 

Falling asleep. Sounds strange, I know. 

But suddenly falling asleep, when you don't want to. 

Yeah. And yet in the middle of the night, I can't sleep. 

My nights are some of the worst I've ever had. 

 

Much of the time lately, it's been like my days were getting better, 

but my nights were getting worse. 

Except... some of the days have been bad again too. 

One day where I got up, and I could barely walk, I felt so awful. 

I was just so shaky. 

Another time, I woke up and I had such bad cramps, and felt so sick. 

 

So hard to keep hopes up.  

 

Some people have great success stories. 

But will we all get there? 

I hope so. 

I've always believed so. 

But sometimes it's harder to believe it. 

All I can do most days, is just put one food in front of the other. 

One foot at a time. 

One minute. One hour. One day. 

 

Oh! And I thought of another symptom!

Actually, now I thought of two!

One of them is that I definitely can't think like I used to. 

That's the second one I thought of, after realizing how hard 

a time I am having trying to think of all the symptoms, without forgetting any. 

 

The other one, was the dryness!

Dry eyes. Dry nose. Dry lips. Dry mouth. Dry hands. 

Even the palms of my hands get dry, and tight, and wrinkled. 

But that comes, and goes, with little rhyme or reason that I can see. 

I often worry that I'm dehydrated, but I'm drinking more than I ever have!

So I'm not sure what to think. 

 

Now I went and thought of another symptom, and then promptly forgot what it was. 

I was like, oh! that too.. And now I can't remember what it was. 

I was determined to list all the ones that I could think of for this post. 

Even just for myself, to document what they all are right now. 

So that I could refer to it late, as a reference point.  

 

Funny, I can't remember the one that I just thought of, 

but I thought of a different one. 

In spite of the dryness... when I lay in bed, my eyes often shed tears. 

Running down my face. Even though I'm not crying. 

Most often when i wake up with a cortisol spike. 

But it also happens when I am falling asleep. 

And often I drool too. Or suddenly salivate even in the middle of the day. 

Even though much of the time, especially in the morning, my mouth feels dry. 

 

Anyway. 

It's later than I thought. 

Going to go to bed now.  

 

I hope you all have a better day tomorow. 

Best wishes, 

Waterfall. 

[Rosetta]

Hey there.  Falling asleep in the middle of the day is something I have been experiencing for a while now.  Even while sitting up in a chair.  It happens when I am having a day without much anxiety after the cortisol spike/morning anxiety wears off.  It will happen for a day or two and then not again for weeks.  

 

Better days worse nights -- me, too.  I think it's a part of the nervous system healing -- the episodes of anxiety starting to become less frequent.  Now, I take it as a good sign, but at first I was alarmed.  Today I fell asleep.  My husband woke me up, unfortunately.  My daughter was with grandma, and I could have had a bit of rest, but No as my husband was home.  As soon as I'm awake, that's it.  Alerting hormones are off and running.  I need a quiet, calm place on these days so that I can actually get rest, but that's impossible for me.  

 

I'm glad you enjoyed camping!  Great sign.  You will have more and more chances to live life like that.  It's bittersweet when a new wave comes because it's frustrating to fall back into the trench, but someday you will be stable and capable of just living normal days almost every day.  I will, too.  So hard to wait.

 

Rosetta

[Rabe]

On 8/6/2019 at 1:52 AM, Waterfall said:

Dry eyes. Dry nose. Dry lips. Dry mouth. Dry hands. 

 

On 8/6/2019 at 1:52 AM, Waterfall said:

heart pounding/palpitations. 

 

On 8/6/2019 at 1:52 AM, Waterfall said:

Aches and weakness

 

On 8/6/2019 at 1:52 AM, Waterfall said:

Urinary irritation

 

On 8/6/2019 at 1:52 AM, Waterfall said:

Moodiness. Irritability. P

Hi Waterfall...I just wanted you to know that you are not alone....these are all so familiar.  I am so dry as well...palms of my hands get worse after taking meds and I do know these meds can increase dehydration issues.  I have a  friend who just started am AD...encouraged her not to!  She said today that she is having trouble staying hydrated.  I said to be sure to drink fluids with minerals in them..not just water.  Milk, sports drinks now and then, coconut water and many juices have sodium and potassium, pedialyte is a good balance.  I hope some of these symptoms fade soon for you WR.  SO happy you had a nice time camping!  That is great!💜

[Waterfall]

Hey @Rosetta and @Rabe

Thank you both so much for your encouragement again. 

You have no idea how much better you helped me feel.  

 

I find right now that I have to keep reminding myself where I've been. 

And how far I have come.

To help keep me from getting discouraged.  

 

These glimpses of 'normal' are almost painful, 

because I always come back down again afterward. 

I even find the 'episodes' as I think of them, 

that are the worst, to be rather scary sometimes. 

A sudden bout of nausea. 

Waking up from a nap, and finding myself weak and shaky. 

Sudden heart palpitations or pounding. 

Hot flashes, or feeling cold out of the blue. 

It's the suddenness of it so often, that I find so unsettling. 

Even suddenly finding myself unable to stay awake. 

I know it's likely because I sat quietly for a while, 

but it's unnerving to have so little control.  

 

I think that is the one thing I find hardest to deal with, 

when I have sudden and intense episodes of symptoms. 

Whether that's a sudden attack of nausea, or dizziness, 

or heart pounding, or muscles weakness, or brain fog, 

it's the fact that it can come on so suddenly and be so intense. 

 

I am still heartened by the fact that I have been able to do more. 

To enjoy a bit more of life. Get more things done around. 

Have more adventures.  

 

I can't help being afraid sometimes that I'm doing too much,

and causing my symptoms to get worse. 

Even something as simple as laughing too much, 

can cause me to suddenly feel sick. 

 

And of course part of me wonders at what point I can finally 

begin slowly and carefully tapering off this horrible drug I'm still taking. 

I've been holding for more than a year. 

And I can't wait to be finished taking it. 

Presuming that I ever can.  

 

Feeling the way I do today,

it's hard not to wonder sometimes if I really can ever taper. 

After having such a good holiday, 

and some of the other things I've managed to do lately, 

it's frustrating to still endure so many rough waves. 

 

Last night, for the second time in a couple weeks, 

I suddenly had bad nausea while trying to fall asleep in bed. 

Bad enough that I had to get up and go sit in the bathroom for a while. 

It took a long time before I could settle. 

I eventually sat in my chair, and fell asleep. 

When I woke up a short time later, 

my nausea was much better, 

but I felt very weak and unsteady and, just weird.  

I stumbled to bed, and eventually fell asleep around 12:30am. 

Only to wake up again at 4:37 with a cortisol spike. 

I laid there for some time again before I fell asleep once again. 

But I did manage to sleep then until almost 9:00, 

which is quite something because I haven't been able to sleep in lately. 

 

I did eventually remember a couple other symptoms that I 

meant to list the other day and couldn't remember. 

One of them was pressure in the bridge of my nose. 

Another was pressure and itching in my ears.  

Newest symptom? Genital throbbing. 

Yeah, that just totally caught me be surprise. 

But its happened a few times now, so I'm not just imagining it. 

 

It's ridiculously comforting to know that I'm not the only one experiencing all these things. 

Though I still wish that they weren't so common and severe.  

It's also frustrating when a particular symptom, like this nausea, 

you aren't sure if it's the bug that seems to be going around... or just more withdrawal. 

I suppose you can't do much about it either way, 

but I find how you think of it, can make sure a huge difference. 

So for me, understanding what is going on, can help so incredibly much. 

 

In other news, 

my husband might finally be getting a new job!

He's done the screening, a phone interview, and on Friday the in person interview!

We expect to hear back by Tuesday.  

It would be so nice if he gets this.  

 

And.  

I fell in love with a cat. 

I'm kicking myself, because I'm not sure I need the extra work and stress. 

But... I want him so bad.  

I've been arguing back and forth with myself.  

Sometimes I think I'm crazy to even consider it. 

Then I think, how can I not? In my heart, he's already mine.  

And then I think again, like last night, when I feel horrible, 

how could I deal with him at a time like this?  

And I just don't know. 

I'm so torn.  

 

I'm trying to hard to keep up with taking care of my house properly. 

Everything I do is always slower and harder than I'd like. 

Nothing comes easily anymore. 

Even when I think I'm doing well, 

all it takes is a stairs, or an uphill path, or lifting one too many things, 

or pushing myself just a little too long, or too hard, 

and I feel sick, or weak, or horrible in some way or another. 

 

I had an episode that scared me last week at church, 

when I got enthusiastic about signing, 

and I suddenly felt dizzy and weak, like I was going to fall. 

I didn't.

But it sure wasn't fun. 

I held onto my husband for support for a minute. 

And his reaction was... but you kept singing! 

Yeah. 

I didn't say I was always clever. 

I love to sing. 

And it's hard for me, that it has been so hard to sing.  

 

Of course, it's hard for all of us, that it's so hard to do just about anything. 

Which is why, again, that I have to remind myself that I've been worse. 

Otherwise it would be so much more difficult not to be very discouraged.  

Especially on a day like today, when I am still struggling with nausea on and off. 

 

But I think I'm coming back to saying the things I said at the beginning, 

so that probably means I've talked more than long enough.  

Thank you for listening.  

 

Hope you've had a better day!

Best wishes, 

Waterfall.  

 

(Oh! How could I forget! I was going to sympathize with you, Rabe, 

about having a friend taking an AD, after all that we've learned. I 

know a few people taking them, and it makes me so sad. And yet... 

some people seem so happy with them. I find it almost confusing. 

But I'm sure, even if it's a honeymoon short term, it's only going to

end badly, however long it takes. I wish I could reach them all, but 

so few people around me seem keen to believe me about what is 

going on. Even one of my best friends seems to think that I am 

exaggerating the whole thing. Oh, if only they knew.  But like so 

many things in life, some people have to trip over the mistake 

themselves, before they'll get it. So sad. So very sad. : (   Slowly 

people will learn.)
(Oh, and another thing, I hear you also about the drinks. I can't 

have milk, because I'm intolerant, and I'm avoiding sugars right

now, but I've found that a drink with water, lemon or lime, apple

cider vinegar, and salt and potatssium in it , seems to help me

feel a little bit better. If I remember to make myself drink it. In the

right balance, it doesn't taste nearly as bad as it sounds, though

I can't say I always enjoy it as much as I'd like.) 

 

Thanks again to both of you, for reminding me that I'm not alone. 

See you later for real this time, 

Waterfall.  

[Rabe]

I think a cat would love to rock with you in your chair WF and would bring you much joy.  Would love to hear what you decided!💜

[Waterfall]

I was just thinking, it's a shame sometimes that we tend to feel most inclined to post on the worst days, about our worst experiences and struggles. 

I wish I came by more often to share the good days. They are so easily forgotten when the bad days come again. 

It's also a shame that I write so many lovely posts in my head, that never make it here. I even started this post in my head, and forgot a couple great opening lines I'd come up with. 

 

So. 

I've been doing pretty good lately. 

Feeling almost half normal sometimes even!

Still some frustrating symptoms, but I was functioning. 

 

But. Not today. 

Not the last two days.  

Yesterday, I struggled with feeling dizzy, and weak, and a bit sick. 

This morning? 

I woke up, walked out of my room, and then pretty much ran for the bathroom. 

Emptied my bowels, and almost my stomach too. 

I felt like I was burning, but my skin was cold. 

It was just awful.  

I felt so very sick. 

But it subsided again, after a little while. 

Now I just feel... sick. 

 

It's frustrating because I'm not sure if it's withdrawal specifically, 

or if it's maybe some kind of virus, 

or who knows what else!  

Was it something I did? Something I ate?  

Something I didn't do?  

 

It's also frustrating that my bodies signals seem to be mixed up. 

I can't always tell anymore whether I have to go to the bathroom or not. 

Or whether I am hungry or not. 

Or whether I am tired or not. 

Sometimes I just feel... sick. 

And it's one of those things. 

It's so weird and confusing.  

 

One of the most frustrating things I am still dealing with, 

is the suddenness and intensity of these random episodes of symptoms. 

It seems to be something that has gotten worse lately.  

The other night I was getting ready for bed, and suddenly had a terrible headache. 

I eventually fell asleep, only to be woken up by the pain in my head. 

After a bit I got up, because I couldn't sleep, and took a tylenol, which I almost never do. 

I did manage to get back to sleep after about 2 hours, but the hint of headache lingered for a few days. 

 

Sometimes it's sudden tooth pain.

A few times now it's been sudden cramps. 

Other times it's been sudden joint or muscle pain usually in one area, like one lower arm, or one leg. 

Sometimes it's both legs or arms, but rarely. If it's a bigger area, it's usually a duller pain. 

If it's a smaller area, the pain can be quite intense.  

Sometimes the pain, like the cramps, goes away again with the hour. 

The tooth pain can last for days or weeks, ebbing and flowing. 

Only to completely disappear again for days or weeks.  

 

Same thing can happen with nausea. 

I can be in the middle of doing something, 

whether it's walking around doing chores, 

or sitting talking to my husband, 

or singing, or trying to fall asleep, 

I can just suddenly be really nauseated. 

Given a little time, it typically goes away again, 

but it's just so sudden and intense. 

Sometimes I have the runs when this happens. 

Or a lot of burping or gas. Other times not. 

I often feel on the verge of vomiting, but I never have. 

This morning was possibly the worst such episode that I've had. 

 

The other day I had a sudden episode of feeling sick, shaky, and jittery too. 

It too, passed after a couple hours.  

 

I'm not sure if all these things are happening because I've been doing well 

and been more busy on the times in between?  

It's almost like my highs are higher right now, and the lows lower. 

I just don't know what to think. 

Or what to do. 

 

Right now, today is awful. 

One of the worst days I've had in a very long time.  

And I thought yesterday was bad. 

I did almost nothing but sit in my chair yesterday.  

Same thing so far today. 

Except today I haven't eaten so far. 

Not sure whether my body is telling me that I should right now. Or shouldn't. 

 

In other news. 

School is set to start next week. 

My husband is also starting his new job next week. 

I am in the process of preparing to adopt a cat.  (Or two!)

(the hardest thing is choosing the right one!)

My chair is probably a little broken, but it still rocks!

Back, and forth, and back, and forth, and back, and forth... 

 

Life is hard. 

Trying to look for a silver lining today.  

 

I hope you had a better day today. 

Waterfall. 

 

[getofflex]

Hello Waterfall, I'm so sorry for the pain and suffering you are going through.  I can relate.  I'm close to the end of a taper off Lexapro, and I've been in a wave for the past 3 weeks.  It's been the longest wave I've had for a very long time, but there have been many stressors in my life.  My way of dealing is to practice acceptance, listen to lots of inspirational Christian messages on youtube, and only do the bare minimum to get by.  I also take a walk every day.  Reading this forum helps a lot to, to realize I'm not alone in this long and confusing struggle with go through.  Know that I am praying for you, to feel better and to get well.  We will get better!  It is just a very long and gradual process.  So please be encouraged.  Jennifer

[Waterfall]

Hey @getofflex

Thank you so much for stopping by. 

I'm sorry to hear that you've been in a bad wave, 

but I can definitely sympathize. 

 

Those are some good ideas for helping to deal with it, thank you for sharing them with me. 

My husband keeps bugging me to take a walk every day, but so far I haven't been able to manage. 

If I am too busy, or exert myself too much my symptoms always get worse.  

I keep hoping that my stamina will improve over time, as I slowly try get busier. 

I am also totally with you on how much this forum helps us to share the struggle and not feel so alone. 

 

I am SO happy for you that you are close to the end of your taper!

I am only on a small dose of clonazepam at this point, but I haven't dared taper in a very long time. 

I already find the symptoms that I am dealing with almost more than I can handle. 

And I seem to react very strongly to even the slightest changes. 

I am currently very strict with making sure that I take an accurate dose at the same time every day. 

Some days I'm afraid that I will never get off this horrible drug.  

 

Every time that I am tempted to despair, 

I try to remind myself that I have been worse. 

Things have improved. Even if it's hard to see sometimes. 

I can no regularly go out. Go to the store. 

Not long ago I couldn't. And certainly not by myself. 

Now I've gone out lots of times!

I even went camping for a week this summer!

And took my kids to swimming lessons these past few weeks. 

Went swimming with my family at the pool. 

Took a drive to the ocean. To the park. 

And I'm planning to adopt two little kitties this month! So excited!

 

So as much as I struggling to understand why these past two days have been so rough. 

And why I'm regularly thrown off by these episodes out of the blue. 

And if I'll ever get my normal stamina back again.

At the same time, t's amazing all the things I've been able to do this summer!

I want to do more, of course. 

But these are things that I wanted to do and couldn't last year. 

Here's hoping that I'll be able to say the same thing next year!

 

Thank you again for stopping by.  

I hope you have a better day tomorrow!

Best wishes, 

Waterfall. 

[getofflex]

5 minutes ago, Waterfall said:

 

I am SO happy for you that you are close to the end of your taper!

I am only on a small dose of clonazepam at this point, but I haven't dared taper in a very long time. 

I already find the symptoms that I am dealing with almost more than I can handle. 

And I seem to react very strongly to even the slightest changes. 

I am currently very strict with making sure that I take an accurate dose at the same time every day. 

Some days I'm afraid that I will never get off this horrible drug.  

 

 

I feel the same way.  I've been on my current dose for almost 1.5 months and I don't dare taper.  That's OK, there is no deadline for getting off this drug.  Still praying for you, and everyone else in here!

[Waterfall]

@getofflex

I've been on the same dose for over a year and a half. 

Although for the first few months I didn't realize how important it was to accurately measure my dose. 

So I may have spent the first while making everything worse.  

But I've been holding steady and accurately for over a year now. 

Well, except a case in the spring when I forgot a couple doses. Which was really frustrating. 

I'm never sure if holding is making things worse in the long run because I'm still taking it, 

or if I should continue to wait... and for what?  

I wish I knew what to look for to know when it's time that I can finally taper off for good. 

And I wish I had more confidence, like I did in the beginning, that I -will- eventually heal. 

And not feel so sick all the time.  

[Rabe]

Hi Waterfall....I am happy to read that you have had some better days.  I sure understand how the memory of those good days can fade so quickly when the storms hit again.  Know that my heart and thoughts are with your Waterfall!  You are so amazing with your kids and all.

I am so happy to hear you will be getting some furry friends...I think they will be a comfort in times like these...I sure hope so!!  Love and hugs!! 💜

[Waterfall]

Hey @Rabe

Thanks for stopping by. 

I was thinking today how grateful I am for the days that are good. 

It may be hard to remember them sometimes, but I am so thankful they exist. 

Remembering them, and the encouraging words of my friends here, 

helps make the hard days just a little brighter and easier to endure.  

 

Today, I am hopeful, discouraged, and confused, all at once. 

The last few days I have had some terrible bladder/flank/lower back pain. 

Today was the worst I've had it yet. 

So I finally gave in a went to the urgent care clinic. 

Where they promptly declared that I have a UTI. 

Again. 

 

The thing is, I went it with milder, but similar symptoms back in June. 

They told me I had blood and white blood cells in my urine. 

And that I had a UTI/kidney infection. (They weren't always totally clear)

I dutifully took the antibiotics the prescribed to me. 

And saw no relief whatsoever. 

 

So I went back to them. 

They said wait longer. 

I waited longer.  And went back again. 

At that point, they told me that I'd never had a UTI at all. 

The bacterial culture had come back with nothing. 

So, no bacteria, no infection. 

 

I figured it was just withdrawal stuff, and grinned and bore it for the rest of the summer. 

It's been a bit up and down all summer.  

Until Sunday. 

I've already been feeling kinda off/sick since last... Wednesday I think. 

I was wondering why I was feeling so bad, after doing so well. 

I still don't know for sure, but Sunday I woke up and my bladder hurt. 

A lot. 

 

Monday was a little bit better, in the bladder department, anyway. 

I still felt a bit rough overall, but I thought whatever was irritating my bladder, was improving. 

Today was worse. 

My bladder hurts and burns all the time. 

Off and on I also have cramps and pain in my back. 

Sometimes I also have pain in my chest and my left shoulder blade, but I get that sometimes anyway. 

 

So, when I went in again today, 

I was hoping they'd look into it more, and maybe see if it was inflammation, 

or maybe bladder stones, or... something! 

I thought they'd be more thorough about it. 

They just said, sounds like a UTI. 

 

Okay, technically, he said that there was a chance it was interstitial cystitis. 

But for now, he wants me to take antibiotics again.  

So he wrote me a prescription. 

Just as he was about to leave, I said, wait... just to check, is this a penicillin, 

because I'm allergic to penicillin. 

He asked the standard, "What reaction did you have?"  

"I had a rash as a child." I said. 

"Okay, you'll be fine," he said. 

 

Fast forward to the pharmacy. 

They think I shouldn't take it, because it's a cousin to penicillin. 

Let's fax the doctor and see what he says about that., they say. 

Great. 

 

Oh, and while I'm there, I remember that last time, 

in June, when I took the other antibiotic, a few days later, 

my lips suddenly swelled up one evening, and my lips, tongue, and mouth were burning

for a few hours, before it subsided, and went away over the next few days. 

Was that also a cousin to penicillin, I ask?  

Nope. Not related at all. 

Oh, but we wouldn't recommend taking that one again. 

 

Great. 

So now I may or may not have a UTI. 

And I may or may not react to this antibiotic. 

Or any other one, it seems. 

 

So now I feel absolutely like crap. 

And I have no idea what to do about it.. 

 

Just when I thought I was starting to do okay.  

With enough struggles in between already. 

Now this. 

 

My husband started his new job today. 

The kids started school. 

And I felt horrible.  

 

My husband thinks I should not take anything. 

It's probably just more withdrawal nonsense, he says. 

You have stuff like this all the time.  

And you don't know if the antibiotic will help. 

And it most certainly -will- hurt you. 

 

Thanks, Dear. 

I still don't know what to do. 

I'm in pain. 

Miserable. 

I feel awful. 

So what do I do?  

 

Always so many questions? 

Doesn't anyone have answers?  

 

Which reminds me of the other interesting thing. 

At our church on Sunday, we had a short presentation 

from a local group that our church helps to support. 

Interestingly... this organization deals with addiction. 

Addiction to alcohol... and drugs. 

 

So I asked the lady afterwards, 

if they ever encounter, or deal with, 

people who are having issues with drugs they've taken as prescribed. 

Now, we talked a bit, and she wants to refer me to a specific doctor. 

So, I'm hopeful that maybe this doctor will finally be someone who understands. 

While also a little worried that it's just going to be the standard addiction response. 

What we're going through isn't the standard, stop taking it, detox, and move on. 

And try avoid relapse.  

 

Will this doctor know?  

I don't know yet. 

But I'm trying to find out.  

 

If only I didn't feel so bad... 

And, admittedly, a little scared. 

I wish I knew what was actually going on. 

Understanding generally makes things easier to bear. 

 

I hope the rest of you have had a better day today, 

Best wishes, 

Waterfall. 

[Rosetta]

Hi sweetie,

 

I would for the lab results to see if you have bacteria.  I'm so sad that you feel terrible.  For what it's worth you will notice when you stabilize.  You will begin to be able to do more and more often.  You so know.  Yes, consistency.  That's it.  I'm rooting for you.

 

Love, Rosetta

[Giulietta]

Dear Waterfall,

 

What a tought time you are having (aren't we all) - on so many days and weeks (consecutively at that) we wonder when we will have respite from these trying times. If it is not one thing, it seems to be another.  I have felt so awful, so alone, wondered whether I will have to reinstate and then one day - I am feeling fine. Windows and waves. I have learned that these may be expected for those of us sensitive to these neurologicaly activating drugs (I am - as you can see from my intro - I have been on Many for years - and take concurrrently as well) and that they will pass - I need to hang in there and hold at a given dose - or in some cases have had to increase  a bit.

 

It sounds like you have an undestanding family - this is something to be grateful for.

 

Have a pleasant day

 

Guilietta

 

 

 

 

 

 

[Rabe]

Hi Waterfall,

A UTI ought not be a guess...thats ridiculous!!  Either you have one or you dont...period.  If they did a culture they should know.  I nothing grew than you dont have one.  I it did what bug is it and what is it susceptible to that you can take without worrying about a reaction.  

I will say that I have had blood in my urine on and off for quite some time.  I wonder now if it is the medications.  I also on and off get bad bladder burning which I do think is interstitial cystitis....for me it is r/t food I think.  If you google it you can find out what foods irritate your bladder and perhaps make some connections.

I would ask for a copy of you test results and if the culture is clear I would not take anything.  Cranberry juice is great for the bladder as are other things that you can try...aslo easy to google.  

I just wanted you to know that this could be r/t to the WD or just an ongoing thing r/t diet, stress, etc.  Personally I would check things out before heading down he AB route.  They can complicate matters.

Take care Waterfall.  Keep me posted huh?  Hope you feel or are feeling better!!!💜

[AuntieBea]

Dear Waterfall,

Just read through your recent post about recurrent UTI’s. It is a miserable thing to be going through. 

I have had the same going on over a period of many years and wanted to pass on to you information on the only thing that has ever helped me. It is d-mannose powder and many people on SA do talk about it. I haven’t read everything that others have said and whether or not it is well tolerated in general, but for me it has been a Godsend. Most of the information I originally got about it (dosage amounts and general information) came from a British company called Sweet Cures. Their website is (believe it or not) waterfall-d-mannose.com. Check it out to see if it sounds like something you want to try. I don’t buy D-Mannose from them, but rather from Amazon (NOW D-Mannose, 6oz, approx $25). 6oz lasts quite a while depending on whether I am treating an acute condition or just preventing recurrence. I follow Sweet Cures dosing protocol though. 

Of course, please research it for yourself...I just felt compelled to let you know about it in case you hadn’t heard of it before.

Thinking of you.... 

Love, Auntie Bea

[Waterfall]

Time for an update!

Thank you @Rosetta @Guilietta @Rabe and @AuntieBea for stopping by. 

 

I took your advice, Rosetta, and I didn't take anything. 

Which was a good thing, because the bacteria culture came back negative. 

No UTI. 

Well, that was after I finally got an appointment with my doctor, 

only to find that the Urgent Care doctor, hadn't take a culture at all, like he said he did. 

Anyway, my own doctor did take a culture, and it was negative. 

 

So. 

He told me it's probably overactive bladder, which is common post UTI. 

Which is a funny thing for him to say, because apparently I never had a UTI in the first place. 

So I'd like to know what HAS been causing all these symptoms. 

 

I think the most likely answer, is what Rabe said, that it's something like interstitial cystitis. 

Which is probably related to, or caused by, withdrawal and the related issues with stress. 

I think it's possible that one of the triggers might be chocolate. 

Or perhaps more specifically it could be caffeine, but since that's my only source of it, the difference may be irrelevant. 

 

In other news, life continues to go up.. and down... and up.. and down. 

Maybe my username should have been Roller Coaster.   

 

Two days ago now, I got my cats!! Yay!!!

The first night was a little rough. They were stressed, and made a big mess.  

So I was really stressed that night, and did NOT sleep well.  

When I got up yesterday morning, I felt pretty rough. 

But after that, I seemed to settle down, cheer up, and have a pretty good day!

 

Which is the opposite of today. 

Today, the morning went great. 

I felt on top of the world!!

But over the day I've just been feeling worse and worse. 

The worst thing bothering me, has been a chest pain. 

Though now it seems to have shifted, first to my left shoulder blade, 

and now to my shoulders, and left arm.  

And just in general I feel a bit jittery, sick, sore, and tired. 

 

Was not expecting that today. 

You never know, eh?  

A day can start great, and end terrible. 

It can start terrible, and end great!

Or it can start pretty good, get bad, and improve again. 

Or... there are endless combinations!

Any day, or hour, or even minute, can be drastically different than the rest of the day. 

Which gives hope when you are down, 

but is kinda discouraging when you are up... 

and bound to come down again. 

 

It reminds me of something my Mom always used to say. 

She'd say, "For every up, there is a down, and for ever down, there is an up."

So, I'm like, okay, so if you are down, then you'll go up again. 

Yup, she says. 

But if you are up, you'll come down again?  

That's right, she'd tell me. 

I said, that's depressing. You can't ever stay up. 

That's true, she'd admit. But every time you're down, you know you'll come back up again too. 

So it's both discouraging and hopeful, all at once. 

You will go down. But you'll come back up again too.  

Up and down. And down and up.  

Interesting, eh?  

Even life without AD and other such things has waves and windows. 

They just aren't always so intense as the ones we endure.  

 

Anyway. Feeling rough right now, 

but looking forward to that next window. 

And enjoying my new kitties.  

Hey, if you like you guys could help me try pick some new names!

 

The one kitty is a brown, short hair, spotted tabby. 

She came with the name Pumpkin. 

I thought it suited her originally, because I thought she was small, and timid. 

Well, she's grown.  And she's feisty.  And fast.  And good at jumping. 

So it doesn't seem right for her anymore. 

 

The other one, is a medium hair, with darker tabby markings on top, 

and white markings on her belly and all her legs, as well as a ruff around her neck. 

She's very fluffy, soft, and sweet.  She's also excellent at climbing and catching things in the air. 

Oh, and she came with the name Aphrodite, but we wanted something shorter. 

Something that's not such a mouthful, and easier for her to recognize.  

Most cats respond best if it is no longer than two syllables. 

 

So, we've considered the name Zephyr for the first one. 

And Pepper, for the second one. 

We came up with the independently, 

and the biggest problem is that they sound too much the same. 

So we aren't happy with them yet. 

The names, I mean. Not the cats.   

 

So if you have any name ideas, let me know!  

 

I've got just a little time left to relax here, before it's time to go pick up the kids for school. 

And then my husband from his new job, which is thankfully going really well!

 

I hope you've all had a better day!

Wishing you all the best, 

Waterfall. 

[Giulietta]

Hello Waterfall! (a/k/a roller coaster)

 

What a nice message. I read all positivity. Even though the day declined as it wore on (same for me yesterday and now I am having some zaps and tingling) - you have new kittens , your husband's job is going great, and you don't have a UTI. Hoorah. 

 

On the bladder thing - it is not uncommon with some medications and anxiety to have urinary retention, urgency or frequency. I have / had all 3. To help with the urgency you could try to strengthen the muscles in your pelvic floor (kegel exercises). 

 

31 minutes ago, Waterfall said:

"For every up, there is a down, and for ever down, there is an up."

 

Your mother has it right. For every action, there is an equal and opposite reaction (Sir Isaac Newton I think said that). When we are experiencing lows - we may appreciate the higher moments even more. Maybe learning to accept / manage the ups and downs is the trick.

 

Names for the cats. I like Zephyr. It is original. Pumpkin is a cute name - why not call this other kitty Pumpkin?

 

 

[Waterfall]

Thanks for stopping by again Guiletta.  

I -was- coming back to report some more positivity. 

I've had, overall, a pretty good day today. 

The kitties are settling in. 

I haven't felt too rough today. Not great, but not bad.

I've been in a pretty good mood.  

I've even been reasonably productive, which I'm quite pleased with. 

 

And then. 

The other shoe drops. 

I noticed this morning that I'd reached the last pill in my pill container. 

You know, one of those things, I take carefully at the same time every day. 

And that my husband carefully measures in the same dose. 

Usually, the pill box runs out, and my husband makes more.  

So I let him know that it was time to make some more. 

Only. 

He said there isn't any. 

My doctors appointment isn't until next Friday. 

And chances are, I won't be able to get in any earlier. 

I could maybe get in to see a different doctor. 

But not tonight anymore... 

We even contacted the pharmacy. 

Usually they can give you a short term prescription to tide you over. 

But. 

Clonazepam is a 'controlled substance'. 

So, they can't give it to me. 

Without the okay of a doctor. 

 

So. 

My husbands idea? 

Why not just quit. 

You need to eventually.  

 

Um... 

Mayday??  

I am barely getting by. 

I'm getting by.  I am. 

But... every day is a struggle.  

I am SO thankful for the things I can do right now. 

I don't want to lose them all.  

I don't want to barely exist through my days again. 

For months.  

I've been there.  

 

But what am I going to do?  

 

As I see it, I have two options.  

(Just quitting doesn't look like an option to me..

let me know if you think otherwise.)

In no particular order:
Option #1:
Go to Urgent Care, wait for a couple hours, 

and hope that they will refill it. 

Option #2:

Cheat. Or at least, that's what it feels like I'm doing. 

Because my doctor is actually from my church. So 

I have his home phone number. So I could cheat. 

And phone him at home. I'm sure he wouldn't mind. 

But my husband is against this idea. 

It's not supposed to be done. 

And I do get it. 

I don't -want- to use this option. 

I don't want to 'abuse' the privileges I have. 

But... 

 

I'd love your thoughts.  

Anyone.  

 

Best wishes, 

Waterfall.  

[ChessieCat]

Another option is to ring the surgery as soon as they open and explain the situation and see if the doctor will write the script for you to collect.

 

Edited September 15, 2019 by ChessieCat

[getofflex]

I would definitely do whatever it takes to get enough pills to where you don't miss any doses.  This could mess you up and send you into a bad wave.  Your husband is not the one going through this withdrawal.  He has no idea what it is like.  Don't "just quit".  They say that is like throwing your brain off of a cliff.  Please keep us posted.

[Waterfall]

Thank you again everyone, for stopping by. 

You are hardly going to believe the update I have for you today!

 

First, part one.  

Yesterday, I was all stressed about how I was going to renew my prescription. 

Well, we were finishing up supper as a family, and I still didn't have an answer.

So, as we ended the meal in prayer, I added my own little prayer in my heart.

I asked God o help me figure out what to do. To help me.

And no sooner did I have the thought, than I suddenly remembered!

I've been keeping a pill bottle, with two spare pills in my purse!

In case of just this kind of emergency.

I di the calculations in my head...

Two piils, at a quarter a pill, twice a day, definitely gives me time to contact my doctor. 

Wow.  What relief.  

Took my pill last night, and went to bed feeling much more at peace.

 

Enter part two.

I had a fairly decent sleep. 

Start of the day went alright. 

Went to take my morning pill.

My husband, as usual has filled my pill box.

I do a double take.

There are eight pills in the box. 

Two for each of four days, including today.

But... I took one last night. 

So. That's nine.

How does that work??

Two pills  split into quarters, makes eight.

Not nine.

 

I stand there, staring at the pills, holding back the panic that threatens to rise.

What's going on here?

I calculate again. Did my husband make a mistake in the measurements??

Finally, I put the box slowly back on the shelf. 

My mind is in turmoil.

Just how big a difference would that be, I think.

How would that affect me.  

 

And as I put it back, I see the pill bottle. 

It has a bunch more in it.  

Whaaaaat!?!??

MORE pills???

But...

We'd looked around pretty carefully, when we thought we were completely out.

What could possibly explain this!?

 

I hurried t ask my husband. 

I said... nine!?

That doesn't even make sense, 

but what's will all those other ones!?

Two pills, at one quarter, twice a day, only makes eight pills.

 

"Dear," he says, "you haven't been at one quarter in a long time."

WHAAAAAT!!??!?!

 

He's been slowly tapering me down.  

For the better part of a year.  

I'm down to less than an 1/8th, twice a day.  

 

Like. Wow.  

I was so sad that I was taking so long to feel ready to taper.  

But he's been doing a really slow, steady taper for a long time already. 

I'm already so far.  

And I didn't even know it.  

It finally feels like the end is in sight.  

Not that I'm saying it means it's super close. 

It's not like this suddenly means I'll be done dealing with withdrawal by the end of the year.  

Withdrawal is still my road for quite some time to come. 

 

But I can't remember the last time I felt so hopeful. 

I finally feel like the end of the tunnel is actually out there for me.  

I used to think it was, but I was losing hope.  Wondering if I'd ever actually see that light.  

But it feels real again.  

Real, and close enough to see it. Feel it.  

 

It still doesn't take away the things that made today tough. 

The pains, aches, and struggles that we go through ever day. 

But the hope! The excitement I feel today, can't be ruined!

 

Wow.  

 

I wish you all had a day like mine was today.  

If only we could all suddenly find ourselves further down the road than we dared dream.  

 

Thankfully, we can still make gains. However long they take. 

But for today, I invite you to celebrate with me.  

Celebrate how far I've come. 

Even when I didn't know I was doing it. 

 

I hope you all had a better day. 

Best wishes, 

Waterfall.  

[Waterfall]

Yikes. 

For every up there is a down, perhaps?

Excited or not, it has been a tougher week than usual.

And now I've just woken up early in the morning with a totally new sensation.

It feels like my heart is pounding.. in my skin? While it burns? 

Very strange sensation.

Never had -this- before.

Harder than usual to stay calm. 

 

On the bright side..

I counted how many pills my husband made.

If my calculations are correct, 

I'm taking 1/13th of a pill, twice a day.

Or, 0.01923 mg.

Panic inducing symptoms in the early morning, or not, 

that's still pretty exciting. 

[getofflex]

Hi Waterfall, that is a great story, about how your husband has been tapering you down more than you realized, and you have enough pills.  The Lord answered your prayer. I'll pray for you for the heart burning and pounding sensation.  

[Rosetta]

Waterfall,

 

What’s happened to you?  Please let us know.

 

Rosetta

[Rosetta]

Does anyone know what happened to Waterfall?