Waterfall: introduction

[Waterfall]

Oh bummer.  It looks like this wave yet deepens.  

Last night I was walking around a bit, and it felt like my feet were thick. 

Like they did when I was pregnant, and retaining water.  

Weird awful feeling. 

So I sat down, and then my toe hurt. Just the one. 

And a strange hurt. Something new I'd never felt. 

And I couldn't seem to stop thinking about it. So frustrating. 

 

Eventually went to sleep last night. Haven't slept as well the past two nights. 

Woke up this morning with a cortisol spike, which I had yesterday too.  

I think you said before, Mirage, how you don't always realize the window you've

had, until the wave comes again. I didn't realize how much better my spikes and

waves of anxiety really were, until they struck again. 

 

So anxiety has come to visit again today, and I'd thought I'd gotten better at dealing with it. 

Until it strikes again, and I realized all over again that I'd forgotten what it's like, and how to 

just roll with it. It still hits you so strong all over again.  

 

I also had a weird feeling this morning, when I woke up, around the time of my cortisol spike, 

where I suddenly just felt like I didn't care about anything.  It passed again.  I think. 

But it was unpleasant. 

 

And symptoms keep changing and jumping out of the woodwork. 

Yesterday evening it was my feet. Then my toe. Somewhere in there, my knee again. 

My knee at least was a recognizable repeat of a previous symptom.  

It was just the opposite knee than the one it usually is. 

The others were completely new ones. 

This morning I have a pain in my elbow, that I only feel if it touches something. 

 

I wonder, Mirage (I think it was you..) if your cortisol spikes have been better after having a protein snack.

I didn't have my before bed protein spike the last two nights, and I wonder if that's why my spikes returned. 

I have also been struggling more with my low blood sugar type symptoms again, so it could be related, or not. 

I don't know.  Either way, I'll be having a protein snack tonight!  

 

My husband forgot that he had a big doctor's appointment this morning. 

So I will have all the kids home with me this morning, instead of going to church.  😞

I wasn't sure that I was going to make it today anyway, the way I'm feeling.  

So.  Bummer.  

 

Hope everyone else is having a brighter day!  

It's certainly been warm enough in this corner of the world... 

[mirage]

@WaterfallIm sorry friend. Yes, I never noticed how good the windows were until the waves came back. And, my waves always come back with so much strength. It is then you realize, you were in a window. 

 

I am in a window right now. It started late Friday night. I had a pretty good day yesterday and was able to do a LOT. An entire day of activity and I left the house at 8:30am. Was gone the entire day. Rolled back home around 5pm, changed, freshened up and headed to a 6:30 dinner reservation with my husband and friends. Got home a little after 10pm. I had moments that the symptoms popped in throughout but I was able to push through them. I'm actually doing okay so far today. Again, symptoms are popping in but I am able to push through. This is the longest window I have had so far and the easiest. Not symptom free, but more able to handle. Praying one of these windows will lead to a new normal and eventually, the forever normal. 

 

You will get a window again Waterfall. Until then, go hour by hour if you have to. I have had many days I had to do that. I would look at the time and plan what I can do in that one hour and then I would take the next hour and with each hour, I would tell myself, "I got through it".

 

Stay strong. It is all healing.

[DMV64]

The windows are like rainbows. They are so good. I am hoping for more and more.

[Rabe]

Sending hugs, Watarfall!!💜

[Waterfall]

On 7/29/2018 at 9:29 AM, mirage said:

Stay strong. It is all healing.

 

Thanks, Mirage.  Good reminder.  

 

On 7/29/2018 at 6:59 PM, DMV64 said:

The windows are like rainbows. They are so good. I am hoping for more and more.

 

Oh, definitely, DMV.  If only the world would stay in vibrant colour!  Not the drab, depressing view we are stuck with more often... 

I think we all hope for more and more.  And love the stories of others who've reached the windows bright and big enough, that 

life goes on, and they no longer dwell on the road anymore, but instead look up and see the beautiful world around. 

 

On 7/29/2018 at 9:07 PM, Rabe said:

Sending hugs, Watarfall!!💜

 

Rabe!  I was beginning to worry!  So glad to hear from you again.  I hope that you're doing okay.  Hugs to you too! 💜

 

 

Sunday, I forgot a dose.  Phooey.  Making mistakes surely doesn't help things. 

Had a nap Sunday afternoon. Not sure why most days I can't nap, but listening to a sermon

on Sunday makes me almost completely unable to stay awake.  Frustrating... 

Sleep has been up and down. One night will go well. The next, not so much. 

The last couple nights haven't been the best.  

 

Yesterday morning I actually went out!  Spent the morning at my sister-in-laws!

I even drove there myself!  It actually felt weird to drive. It's been a while.   

Took along all the kids. Was out from around 10 o'clock until a little after 1:00. 

Stayed there for lunch even too.    

Took the rest of the day quieter, and didn't sit with the family for supper.  

 

I just got up to switch laundry, and now I have a headache again. 

I wish I knew when, or even if, the things that I do make a difference. 

That doesn't seem to be any way to know. 

Is busy better?  Quiet better?  Does what I eat make a difference? 

Does drinking more?  Is there a point where I'm drinking too much? 

Or eating too much?  Too little?  Do I need to watch my salts?  My sugars? 

Is my computer giving me a headache?  Or is it something else? 

 

Find I've been discouraged and wondering what to do with myself. 

Wondering how to spend my time, when I can spend so little time physically busy. 

I don't just want to waste all my time, and I feel like that's what I've been doing. 

But not exactly sure how to change that.  

 

For a while this morning, I felt something like... a fire?

A feeling that I didn't want to give up!

That I felt alive. 

I wish I felt like that more often. 

I admire people like Mirage that seem so strong and determined.

And positive.

I want to be more like that. 

 

I want to be useful.  

[mirage]

@Waterfall you are strong and you are improving. You are doing more than you have been able to do. This is a VERY slow recovery. I can look back 5 months ago and see that I have made progress but to look back 1 month, no progress...well, that I can see now. I am sure things have healed. It is just so slight that we can't see it in 1 month increments. It only becomes obvious after several months.

 

For me, I have decided to eat what I feel like I can eat. I exercise regularly. I drink a lot of water and, just recently, reintroduced a cup of coffee in the late morning. I even had a small glass of wine the other day. I don't want to fret over it. I just want live. I am not focusing on anything but living life each day as it comes. One day, we will all be healthy again and we will sleep again. Life will be normal and not such a tough journey. 

 

Be brave waterfall and count the blessings. We are gaining so much through this that we don't even know about right now. All will be revealed when we get ourselves back and it will be glorious. All of us going through this are strong. This would not happen to someone who is weak. 

 

Hugs and prayers

[Rabe]

SO happy to hear about you day, Waterfall!  How exciting is that????  VERY!!!!☺️💜

[Waterfall]

Heh.  I just went back to read what I wrote earlier, and I was like... I had a headache? 

I don't even remember that part.  

 

I was just playing a game on the computer with my kids. 

Vision went funny a few times. 

Wave of nausea.  

Tic in my eyelid got really bad all of the sudden. 

Then it felt like my heart muscle got a muscle spasm.  

Probably was a muscle in my chest. 

Then and now, I periodically get a stabbing pain in my right ear. 

It stabs, then disappears again.  

And I have that sort of, don't know whether I'm coming or going feeling.  

Blech.  

 

I know it will pass again. 

The only question is how deep, and how long, before it lightens again.  

Trying to read a book for a few minutes, 

but I'm having trouble reading, and also having trouble calming or sitting still. 

Can't stay still, can't stay moving.  An annoying combination. 

 

I really appreciate hearing from you guys. It makes struggling through a little easier. 

I smile now, seeing how excited Rabe is by my day yesterday.  

I'd already forgotten.  How sad it that?  

Thank you, both of you, for your encouragement. 

[Rosetta]

Your thread is such a rich example of what can happen in WD.  The chest spasm -- I got those way way back in the early days of taking Celexa.  I even had an EKG.  (That never stop pes; I justo gotitas usted to them.  So sad.) bI wish the doctor had said it was a side effect of Celexa and that I had been on the drug long enough.  Tapering at that point was the right thing to do, but we all know that even 15 years later it's unlikely a doctor would make the connection or know it was a warning sign.

 

I hope you feel better soon.  -R

[Waterfall]

Thanks for stopping by Rosetta!

 

Yesterday had some more episodes of dizzy and brain zaps.  

Or just general 'not right'-ness.  

Had trouble falling asleep. (Getting into a good book probably didn't help)

Woke up to a mid-level cortisol spike.  

 

This morning tried to do a bit of housework. 

Was frustrated by how quickly I felt awful and had to stop.  

 

Just now I had a freak-out.  Not sure why, how exactly I feel. 

It might have started by having lunch late. 

Then the kids were being stressful.  

And then I was in the middle of something and my husband was trying to get my attention, 

and suddenly I was overwhelmed, and upset, and irritable, and... 

... and still feeling tense and upset and trying to sort out of my feelings, and get calm again. 

It was like a feeling attack.  Or something.  I'm not sure.  It wasn't fun. 

Still isn't.  

Hopefully I 'come back down' soon.  

I think some part of me hit the roof.  

Not that I lost my temper... but I think I lost -something-. 

So weird. Unsettling. Confusing.  And uncomfortable. Upsetting.  

 

Turned on the tv for the kids.  

Going to try to read my book for a few minutes. 

But I'm approaching the climax. It might not help... 

 

Sigh.  

Life.  

[Rabe]

Life for today, Watefall...tomorrow may be a kinder day...time WILL be kinder.  Take care.  Thinking about you!!!💜

[Rosetta]

A good book?  If you feel it's good that's a very important observation!!! A positive feeling! A feeling of normalcy, maybe?  I hope so.  Wanting to go back to the book is a good sign, too.  Yea!

Rosetta

[DMV64]

On 7/31/2018 at 2:32 PM, Waterfall said:

no longer dwell on the road anymore

I am looking forward to this Waterfall!

[Waterfall]

42 minutes ago, DMV64 said:

I am looking forward to this Waterfall!

 

Me too, DMV.  Me too.  

 

 

Today's update.  

Yesterday afternoon I was walking around doing some tidying. 

I remember thinking, hey... I'm walking around, and I actually feel alright.  Like, not awful, for once.  

And then I started to feel awful.  And it sorta passed, or at least stabilized, so I could continue. 

I found myself doing just one more thing, and just one more thing... 

Pushing through, even though sometimes I felt pretty rough. 

 

Right up until I felt like I just couldn't continue.  

Which was already past the point where I thought I had to stop. 

I just had to sit and relax.  

I thought I wouldn't be able to sit for supper. 

But I did!  After sitting for a short bit, I was surprised that I bounced back enough to join my family for supper. 

 

After that, I took it easy.  

Watched a show with my husband. 

Found that I was pretty sore when I got up from my chair. It surprised me. 

And before bed, I thought I'd read again for a few minutes. 

I'd finished the book from earlier, and started a new one. 

I was impressed that I was able to read even through the climax, 

without as strong a reaction as I used to have. 

 

The frustrating part was, with the second book, before bed, 

that even though I was no longer really enjoying it, I couldn't put it down. 

There was a problem, and they weren't solving it, so I couldn't stop reading. 

Until it was solved.  And then I was so close to the end of the book, I finished it. 

As a consequence, I didn't get to sleep until... 1:30 or so?  Not good.  

 

Crawling into bed, I had that feeling where it seems like my legs are moving, when they aren't. 

I woke up again around 7:00, to find that I felt... off.  I decided it was a sore, gassy, crampy kinda feeling.  

Managed to go back to sleep until 9, when my phone rang, and I suddenly felt like all my limbs were moving!

The feeling did fade, and I got up, and was doing okay. 

 

I was kinda sore, from the tidying I did yesterday.  But I ate breakfast.  

Thought we had an appointment at 11:00.  

The phone call this morning delayed it first to 11:30, and later again, to 3:30.  

I managed to take a shower. 

But come lunch time, I suddenly felt I had to eat NOW, or something dreadful would happen. 

Well.  I ate.  As my body suddenly demanded. 

And now I feel sick.  

I'm having puke flavoured burps.  

I feel like I'm suddenly so tired that I can't keep my eyes open.  

Or can't think.  I'm not sure.  Can't think that hard.  

I'm sore.  Tense.  Achy.  Nauseated.  

Constantly feel a bit like I have to go to the bathroom, but not.  

Chest/rib pain on the left has started to return again.  

I finally asked my husband to feed the kids lunch.  

 

Wondering, and worried, how in the world I'm going to make it out for this meeting this afternoon. 

I was thinking yesterday afternoon, before I crashed again, that I was doing pretty good. 

Right now, I feel like this is the worst that I have felt in a while.  

Up.  Down.  Sideways.  And back again.  Blah.  

When will the roller coaster stop?  

Please tell me it stops.  

[mirage]

@WaterfallSorry to hear your struggles with these symptoms but also, happy to hear how much you were able to do! It is a rollercoaster and it changes continually and without warning. 

 

I sometimes think I won't be able to go to something or that I won't be able to work, but each time I do it, I find that my symptoms aren't as bad. It is good for us to continue on with life and to accept the symptoms if they come but also to remember, they may go away as well. The more we are able to get out and do, that time gives us an opportunity to push the symptoms back a smidge. 

 

Hope you have a better night. Thinking of you and sending hugs.

[Waterfall]

Well.  The meeting went alright.  

Thankfully by the time I had to go, I felt a bit better.  

Wasn't easy, but not too crazy hard either.  

 

Best part?  

I actually managed to survive a trip to the store afterwards!!!

With my husband and two of the kids.  

That, on TOP of the meeting we had to have first.  

Pretty thrilled about that!

 

Had to sit for a while when I got home. 

And almost didn't make it to the table for supper... 

But I did.  

 

Slept okay.  More significant cortisol spike this morning. 

But I slept in!  So that was nice. 

Trying hard to get more sleep. 

And haven't been able to get to sleep earlier yet.  

 

Today I've been feeling pretty rough, but I suppose that's is

to be expected after such a big trip out yesterday.  

Still hard not to let it get discouraging, to feel so rough again. 

I keep feeling like I should be able to 'spend a day at the beach' again. 

I did it before, I felt better then, and I can't wait to feel that good again.  

 

Today I have felt really dry again. I guess I haven't been drinking enough. 

My lips and eyes feel really dry.  Which is funny, because I seem to be

salivating like crazy off and on today.  No idea why.  I have had it a few

times before, but it's not a common symptom.  

 

My appetite/hungry/nausea has been more annoying the past few days.

I try to think of it as an improvement over not wanting to eat at all. 

I just find it hard right now, not to give in to eating lots of things I shouldn't. 

Things that are unhealthy and/or laden with sugar!

 

Thankfully the rash that recently flared on my hands has gotten better. 

It probably came on because I cheated on a small bit of dairy recently. 

And even longer ago, I touched a bit of soap that I shouldn't have. 

So I'm glad that it seems to be clearing up a bit.  

 

My teeth have still been mildly bothersome, but they haven't flared

nearly so bad as they have in the past.  Same with my headaches. 

Mild. Annoying.  But tolerable.  

 

Some of my joints flare up off and on.  Never know when which joint, 

or for how long.  Usually it's pretty short lived, for which I am grateful. 

Right now my left big toe has been hurting for a few days. Not sure if

it has gotten infected or what. Planning to soak it tonight, in some warm

epsom salt water. I can't have a bath easily, but I can bath my feet. 

It will get me some magnesium at the same time.  

 

I have had it a couple times when I had an epsom salt bath, that I had

a flare up of infection or illness afterwards, so a 'milder' bath, seems 

like an appealing idea.  No idea why it made my body react that way, 

but maybe this will help, so I can have the benefits, and not any of the

possible drawbacks.  Can't hurt to try.  

 

Has anyone else had such flare ups after an epsom salt bath?  

I didn't the first few several times I did it, over several years. 

But the last couple times I have.  

 

Hmm... any other news?  Can't think of anything right now. 

Oh, but if anyone has any idea for more healthy snacks, I'm struggling

with that right now. It gets too expensive to have pepperoni sticks 

every time I feel hungry between meals. Unfortunately I've been 

turning to thinks like chips and cookies, and sometimes even (gasp!)

cake!  Not the best idea, I don't think. So suggestions welcome.  

[Rabe]

So happy to hear about the meeting and dinner and the store Waterfall!  Must feel good to get out a bit more!  Thinking about you!

[Waterfall]

Good Morning!

(I think it's important to point out, that I finally realized at some point, 

that saying good morning, does not mean that you are declaring that it

IS a good morning, but rather that you are wishing a good morning to

those whom you encounter. We may, or may not, be having a good 

morning, but we can still wish a good morning to others!)

 

16 hours ago, Rabe said:

Thinking about you!

 

Thanks Rabe, for stopping by, and sharing both my ups, and my downs, with me.  

I hope that you've been seeing some better days. I think of you often too.  💜

 

Let's see.  Where am I at?  

I am pleased with some of the things I've accomplished lately. 

But still so frustrated that I can't do -more-. That I keep feeling so lousy. 

 

Yesterday again, I was suddenly overwhelmed. 

I was just trying to help the skinny dude make a treasure hunt. 

And I was trying hard to make sure that the clues ended up in the right places and the right order. 

You know... where you put the clue that says 'kitchen table' in the living room, and not at the 

kitchen table, otherwise the hunt doesn't work.  Well, the stress of trying to think hard enough

to make this simple system actually work, was just about more than I could handle. It made me 

feel almost sick, just trying to think it through. So frustrating. It's really not that complicated, but

it was almost more than my brain, and my emotions, could handle.  

 

Was dizzier and feeling lousier than usual at supper yesterday, but I still managed to drag myself

there, and to stay.  I was also unusually emotional yesterday afternoon. Tears leaked down my 

face a few times, which is definitely not typical for me. There was a bit of a trigger for that, but I'm

trying to bring myself to tell you all about it, and so far, I haven't... 

 

Suffice it to say for now, that it was mostly about my concern of how I can possibly raise my kids

well under these circumstances. How can I teach them well, when I feel like I'm barely keeping 

myself alive, nevermind them?  Clearly... thinking about it, brings me to tears.  

 

Come evening, the bottoms of my feet were burning really badly again. So weird.  And my sore toe? 

I went and banged it on a chair! Ouch!! Soaking it went well, and seems to have helped. 

 

Felt pretty lousy come bedtime last night, and didn't manage to fall asleep until around 1:00.  Slept

until 8:00 when the kids woke me up. Medium cortisol spike.  Still feeling pretty lousy this morning. 

Having trouble walking around much at all, or doing much of anything. Even getting dressed and 

going to the bathroom were harder than usual this morning. I've been very hungry the past few days, 

but I'm having trouble getting my breakfast down today.

 

Somehow that just reminded me of the struggle that I've had with temperature. Most often in the 

morning, or afternoon, I will feel cold. Even if it's warm. And most often when I'm trying to go to bed, 

I will suddenly feel extremely hot. Makes it harder to fall asleep. And I don't handle temperature

influences around me well. I've had it after touching something cold, that I shortly thereafter am 

shivering. Or exposed to something warm, I'm suddenly melting. But other times, say, I'm feeling 

hot, then cold drinks, and spraying myself with water, etc, don't seem to cool me off.  And yet, on a

30 degree day at the beach,when I got a bit wet (it was the beach after all) I felt cold for the rest of

the day. I felt cold. On a 30 degree day. So weird. It's all over the place.  

 

Anyway. Duty (otherwise called kids) calls again!

[mirage]

@WaterfallGood morning right back friend. You are doing a lot more than you can see. Taking care of kids when, well, is hard and you are doing it feeling so ill. My hat is off to you. Amazing!!!

 

Stay brave and strong. It seems this journey is all about time and patience. You are in my prayers. 

 

Hugs

[Waterfall]

5 hours ago, mirage said:

Good morning right back friend.

 

Thanks, friend.  You're brave and strong yourself. And always so positive.  

 

 

I've had an interesting afternoon. 

No matter how much I drink (which has been quite a bit), 

my eyes and lips feel really dry.  

They felt better this morning.  Not anymore. 

Been nauseated. Headachy. Sore. Unsteady. 

 

This past spring I taught myself how to solve a rubik's cube. 

Well, I was trying to do it again today, and while I -did- do it, 

it made me feel stressed, and my fingers wouldn't respond like they should. 

I had the same problem when I was trying to sign my name on some documents the other day. 

And I struggle more with typing now, than I usually do. 

It's like my fingers have lost their coordination.  

It is a very strange feeling.  I hope it goes away again.  

 

In good news, my rash continues to improve. 

My hands are almost completely clear again. 

Of course, it helps if I avoid the things that flare it up. 😜

And my toe doesn't hurt as much today as it did. 

Maybe that soak helped.  Perhaps I should do it again.  😊

[Rosetta]

Thinking of you Waterfall . . . And you solved a Rubik's cube?!  Wow.  That's probably good for your brain.  Sorry you are having so many yucky symptoms.  I hope you sleep well. -R

[Waterfall]

Sigh. 

Anxiety spike out of the blue.

Today hasn't been the easiest, 

but this is a new low.

Tried to sit with the family for supper,

and my heart is suddenly pounding its way right out of my chest! 

Okay, that's how it feels.

One of the worst, out of the blue, intense, 

heart poundings that I've had yet.  

Driven back to my chair.

 

I want to shout "WHY!?"

I don't know. 

And I don't think I'll find the answer. 

Nothing particularly unusual happened today. 

And I'm not aware of anything unusual just now. 

Some days, I got for supper and it's not so bad. 

Other days, it's hard, but I do it. 

Today. I can't. 

I can barely exist for now. 

So I'll wait. 

And it will get better again. 

It might take a while. 

But it will. Eventually.  

 

Today has been a tough day. 

Hopefully tomorrow will be better.  

If I'm lucky, the next hour will be better... 

Or maybe the one after that. 

Cause so far, these last 5 minutes, really suck.  

[Waterfall]

@Rosetta

Heh. Still trying to recover here, 

and I thought you were replying to my post, 

only to realize I hadn't actually posted it yet. 

 

Thankfully my husband brought me a nice hamburger. 

Mmmm,... 

Maybe it will help my body settle down. 

That and my yummy salad.  

 

And yes!  I can solve a rubik's cube!

A short while before we moved, 

back when my brain still worked, 

I carefully followed the directions

that came with a new cube we got my 

son (after we mixed it up beyond anyone's

current ability to fix) until I could do it on

my own. The other day we took it out again

to see if we still remembered how to do it. 

I also figured it would be good for my brain. 

[Waterfall]

Well.  The anxiety went down again.

So did the heart pounding. 

But walking around remained hard. 

Dizziness was bad.  

Fell asleep late again.  

 

Sleep was better for a week or so.  

Now it seems to not be so good again. 

Woke up this morning, and my arms

were burning and fuzzy, half numb, and heavy. 

I got up, and my arms felt better, but now the

soles of my feet feel tingly/burning and thick. 

 

Recently I was constipated for some time. 

Yesterday I had to go suddenly, and often. 

This morning so far too.  

 

I feel dry again this morning. I wonder if, 

like others, I am somewhat dehydrated, in

spite of drinking a lot of water, though how

this could be, I do not understand.  

 

My eyes continue to bother me, and my one

eyelid continues to tic or cramp almost constantly. 

 

This morning I am somewhat emotional, an inclined

to cry, but only in bursts. The rest of the time, I feel kinda

like a stone. 

 

Time for church...

[Waterfall]

Had a sudden need to eat at lunch today. 

Like... I must eat NOW, or feel worse than awful. 

Not fun feeling.  

 

Also had some muscle spasms.  

Some... brain zaps?  Dizziness as well.  

Can't remember what else.  

Haven't had as much abdominal rumbling

since this morning, but I've had to go pee a lot. 

 

Not an easy day, but not the worst either. 

 

Did my Rubik's cube lots of times!  

[DMV64]

Hi Waterfall. I am checking in on you. Glad you were able to do your Rubiks cube a bunch of times!

[Rabe]

Hi Waterfall...I too wanted to see how you are doing..I cant do Rubiks cube once!  You go girl!!!

[Waterfall]

Hey @DMV64 and @Rabe

Thanks for stopping by to check on me. 

 

I thought I was dong better. 

Not so much right now. 

I think yesterday the whole pee thing was better. 

Again, not so much today. 

Well, except this morning I was doing alright. 

I was even somewhat restless.  

Did some tidying up.  

 

MId-afternoon, I started feeling just awful. 

Crashed in a chair, and read a whole children's chapter book, 

before I felt like I could stand again.  

I can't even explain how it felt, I just felt I couldn't, or shouldn't move. 

 

It did get a bit better, but not much.  

Walked around a teeny bit more, and settled back into my chair. 

By supper, it was the same story as the last couple days. 

I was suddenly very high on anxiety. 

It's been a pattern for three days now. 

 

I ate supper, and it improved.  

Although today, I was also dizzy as well as anxious. 

And feeling pretty rough. Almost couldn't eat. 

Now my anxiety is lower, but I still feel pretty lousy. 

 

It's time for the kids to go to bed, but I can't barely think of getting them there. 

Oh, blah.  The feelings keep changing.  Some things the same, some things new and different. 

 

Today I had a feeling like there was a bubble in my chest that was boiling. 

Just a tiny one.  And on my skin right above this imaginary bubble, it was itchy. 

Especially when I wake up in the morning, my limbs, especially my arms, often feel really weird. 

Twitches here. Spasms there. Tightness. Headaches. Suddenly I feel winded, can't breathe! 

And it passes again, after only a moment. This morning it did that six times in a row. Then stopped. 

Often times I briefly get a strange feeling or smell in my nose. My ears itch inside. 

My scalp feels weird. Yesterday it felt like someone put something on my head. With nothing there. 

Oh, and my feet burn! Especially in the evenings, or late in the day. But it could be any time. 

Yesterday it was first thing in the morning after I got up. That time, my feel also felt thick. 

I've started to have it at random times that my hands swell. Suddenly can't get my ring off. 

And I fiddle with my ring a lot, so it bothers me. Plus I have no idea why my hands periodically swell. 

There are times that I feel I'm starving. Sometimes I don't want to eat, but I feel 

like I'll be sick if I don't. Sometimes I feel like I'll be sick if I do.  Sometimes I'm not

hungry but I want to eat. Other times I have no idea what I want, or if I should eat or not. 

At various times my chest hurt, or my back, or the top of my head, on the left front corner. 

Yesterday I felt mostly okay... except that I ached all over.  

Sometimes I feel heavy.  Sometimes sore.  Sometimes.. I don't know -what- I feel. 

 

It's so hard to stay positive in all this mess.  

 

But hey!  Right now, I'm able to do the rubik's cube. 

Over, and over, and over again. 

 

Oh, which reminds me.  The pounding music is back again. 

My son shared a son with me a week or two ago, and it's been stuck on that one quite a lot lately. 

 

Hey there 'Chest'er, 

have you h'ear'd about 'Hair'y, 

he just got 'back' from the 'arm'-y. 

Know he 'nose' how to wear a rose. 

'Hip' 'hip' hooray for the 'arm'-y. 

 

Your'e supposed to touch the appropriate body part when you sing it. 

When you sing 'rose' you're supposed to put your fist over your heart. 

No idea why.  But for some reason it seems like a good idea.  

The problem is that I am getting -really- sick of this song.  

 

Good thing it's not the only one I ever have running through my head. 

But right now I can't think of any others.  

Only, I do know the other day another one popped up out of the blue from my teen years. 

Just one line. Over. And over.  I couldn't even remember what the rest of the song was at all. 

I never know what's going to be blaring on the radio station in my head.  

 

Anyway.  Got to get those kids to bed somehow.  

Sigh.  

 

Here's hoping tomorrow is a better day. 

I could use one of those... 

A better day.  

Mmm... sounds nice.  

 

Meanwhile, 

I think I'll solve that rubik's cube again. 

Hey! That also reminds me:
I found out that some cool patterns can be made with the rubik's cube too.  

We (my biggest dude and I) found out long ago, that you can make a checked pattern. 

That's easy. 

We also found out that you can mix up the centers, and have the rest of the side stay the same colour. 

That's relatively easy too. 

But today I found a cool new pattern.  

I'm not even quite sure how I make it.  

But it looks pretty to me.  

So it makes me smile.  

And then I get to solve it again!

And then I get to try to make the pattern again.  

And solve it again!

A bit of a fun way to keep busy. 

Even if I'll eventually get sick of it, 

it's something nice to do for a while. 

And it's probably good for my brain.  

I certainly hope so. 

I hope something good is going on in there.  

[Rabe]

I think there is a lot good going on up there waterfall...you are a lovely person, devoted mom, supportive friend, and patient enough to listen to that song over and over and do rubies cube over and over.  Yikes!  Thats incredible!!!  💜

[Waterfall]

Hah.  I'm not patient enough to keep listening to the song... it's playing in my head!  

It's kinda hard to turn that off.  

 

Oy, but a new affliction strikes me. 

I was feeling rough enough, but surviving. 

When a pain struck me, in my chest. 

A sharp pain, location not clearly defined, 

in my chest.  On the left hand side. 

Higher and different than my usual lower rib pain. 

It pains the sharper if I try to breath in very deeply. 

For a time it lessened, and stabbed me down 

in my abdomen in stead, but it never left.  

My left arm also hurts a bit.  

But my, what a pain!  I hope it goes soon. 

I can only presume that it's a bad muscle spasm. 

It seems for the last few minutes that because of

or perhaps separately, I seem to suddenly have 

heartburn as well.  

 

Oh, what new misery is this.  

How I hope it leaves soon.  

Always something. Always changing.  

Looking to the horizon, hoping for 

a positive change to come.  

I had one once. And I went to the beach. 

I strain my eyes, looking for another.  

There are glimmers, here and there.  

Also many valleys of pain and misery. 

Depths I didn't not know I could go.  

 

What a journey, this life we live.  

 

Heh.  

I was trying to think of something positive, 

and I remembered a song my son and I made up once. 

So I share that.  

Because remembering it, 

and thinking of sharing it, 

made me smile,

in spite of it all.  

(It's really too bad I can't write down the tune, 

 since I made it up, there's no chance you've heard it before)

 

Oh, I'm dancing on a fluffy rainbow. 

I've got my pink unicorn there. 

Oh, I'm dancing on a fluffy rainbow, 

and hugging my teddy bear!

 

Total nonsense. 

But the kind of total nonsense you can't smile to. 

 

I don't know, right now, how I'm going to be able to get ready for bed. 

I don't know how I'm going to be able to get to sleep. 

I don't know if and when this pain will leave.  

But just there.  I smiled.  

And for a moment, that was enough.  

 

Good night. 

Sleep tight, everyone.  

[Waterfall]

We-ell.  

I was hoping that some sleep would change things. 

But nope. 

Ow.  Ow.  Ow.  

 

I woke up earlier than I have been, 

possibly because of a build-up of gas.  

I laid in bed for another hour before getting up. 

My chest still hurt, but not the stabbing pain of yesterday. 

I got up. Made myself some breakfast.  

 

And then sat in my chair. 

And OW!  Stabbed!

Is my chair making it worse, I wonder? 

Perhaps it's my slouching posture.  

So, I'm trying to eat my breakfast while

sitting a little straighter than usual.  

 

This monster will not rob me of my chair!!

It's not allowed.   

 

So there.  

 

 

Good morning everyone.  

Here's hoping your day started better than mine today.  

[Rabe]

Hi Waterfall...sorry about your indigestion...did you try a tums or something?  Hope it eases up!! 💜

[Waterfall]

Yeah, me too, Rabe. 

Didn't know I could still feel this rough and live to tell the tale.  

And it's hard to imagine that others have it worse!

Pain still comes and goes in my chest and/or my abdomen. 

Really unsteady today. Heart pounds whenever I try stand or walk around. 

So frustrating.  

I hope you are doing okay this week. 

I'm glad that you were able to hold, and not taper yet.  

[DMV64]

Hope you are feeling better! I have had a heck of a day. Lots of drama. High anxiety. Hoping to sleep well.

[Carmie]

On 8/9/2018 at 2:10 AM, Waterfall said:

We-ell.  

I was hoping that some sleep would change things. 

But nope. 

Ow.  Ow.  Ow.  

 

I woke up earlier than I have been, 

possibly because of a build-up of gas.  

I laid in bed for another hour before getting up. 

My chest still hurt, but not the stabbing pain of yesterday. 

I got up. Made myself some breakfast.  

 

And then sat in my chair. 

And OW!  Stabbed!

Is my chair making it worse, I wonder? 

Perhaps it's my slouching posture.  

So, I'm trying to eat my breakfast while

sitting a little straighter than usual.  

 

This monster will not rob me of my chair!!

It's not allowed.   

 

So there.  

 

 

Good morning everyone.  

Here's hoping your day started better than mine today.  

 

Im sorry you’re having indigestion problems Waterfall, 

 

Yes, That chair of yours certainly is a comfort to you. I was at a friend’s place the other day n they had a comfy rocking chair too. I started rocking in it. 

 

Hope you have better days💚

[Waterfall]

On 8/8/2018 at 2:04 PM, Rabe said:

sorry about your indigestion

 

Huh.  A couple of you mentioned indigestion.  Is THAT what that pain is?  

Don't know why that never occurred to me.  

Thankfully it's quite a bit better today.  

 

5 minutes ago, Carmie said:

That chair of yours certainly is a comfort to you.

 

Yes.  It sure is.  I don't know how I would survive without my chair.  

Whenever I feel really rough, all I can think is, I just want to sit in my chair... 

My husband says that I'm not bedridden, I'm chair-ridden.  

He's not far off.  

 

I was thinking of you the other day, Carmie,

and thinking I have been meaning to share 

that picture of my chair you asked for, 

long ago.  😜  

 

I hope you've all been doing better.  

I'm looking forward to another window some day.  

The days are still long and hard. 

 

I was thinking of posting this morning, 

and my brain decided that was the time to play the song:

"It's a long, long way, to Tipperary, 
It's a long, long way to go..."