12-18 month support

[[dr...]]

Thx siggy, nova, and mrs...

 

 

Even though I'm wavy I'm starting to get my mental fortitude to continue on. That next push for the next few months. I'm reading all positives and lowering expectations on myself and healing. You all know how we get caught up in this.  Why am I not better stuff.  It's not two years yet so why should I expect it. If not better at two years I will continue on. Timelines of expectations are killer but it's so hard not to do.

I also just heard my ex got into a motorcycle accident.  Her spouse is paralyzed from waist down and she can walk with assistance but has hand problems too.  She let me know he's doing great and not to feel sorry. My lord!!!  Incredible.  Helped snap me back into perspective that we will all improve and this is NOT permanent.

Have a massage, company picnic, and kateoke bday party today. No rest for the weary.

[[No...]]

Drew and Siggy ... yep ... no rest for the weary ... and ... this year two stuff does seem to have turned into "mind thing" ... seems the fewer "expectations" we can act out the better it is for us ... seems to be no problem having expectations, just not acting on them when things are tough ...

 

Having a wavey day, myself ... not terrible ... just unpleasant ... got the chores done we wanted to do and now hanging out ...

 

Have a good day Folks ... 

[[je...]]

Nova, I think that your (maybe) job is great news and a good sign of healing..

Drew, sounds like things have calmed down for you.. The expectations really are such a hard part of all this. We have to just let that part go.

 

Health fears have been kicking my butt, along with horrible nerve pain, and POTS. I feel like there is a weight on my chest and I'm very lightheaded upon standing, all the typical acute crap that I thought was far behind me. Also, my right eye will not stop twitching which isn't painful, but very annoying.. I'm trying to stay positive, but I will admit it's very hard to right now. Hugs to all of you, Jenny

[[No...]]

Jenny ... sorry to hear you are going through this stuff again ... it is hard to constantly having to be positive and not get overrun with this stuff ...

 

Seems I am having the same kind of day as you ... tried to sleep but the neck and throat tightness and the cough is making it difficult to relax ...

 

Another day and night in paradise ... 

[[je...]]

Thanks Nova, yes all of this up/down is so very tough. What kind of throat stuff do you get? I have a lump feeling or mucous feeling in the back of my throat, it comes and goes in severity, but it always kicks up for me as I'm trying to sleep feels like my throat is tightening- and I can't swallow past the lump. I hope you get some sleep tonight, Jenny 

[[No...]]

Jenny ... mine seems to come from neck tightness ... the big chords on the back of my neck and down from my ears ... and abdominal tightness ... sort of like squeezing both ends of an accordion ... not painful, and not terrible ... just annoying and sometimes distressing ...

 

So as much as I can, grin and bear it ... and nod off while trying to post ... seems I get tired now after two or three nights of fitful sleep ... suppose I can take that as another sign of gradually getting better ...

 

Sitting here at 1130 PM listening to some drippy rainfall and an audiobook ...

[[dr...]]

My day improved as it went along.  I went to a company picnic and enjoyed it.  Just returned home from a karaoke party.  It was in a small, hot room.  My spouse said this is panic attack territory for you.  I not only had no issues I sang two songs.  I can actually feel emotions right now.  I'm happy!!!!  It's scary how good this feels and who knows how long it will last. You know it's almost euphoric. I'm not sure if it's the wave breaking, the tryptophan, or a new adrenal cocktail I took this afternoon(after picnic so prob not).  Maybe a combo.  Regardless...I'm riding this window and hope it stays open.

 

Jenny and nova hope you get a break. 

[[be...]]

Morning all,

 

Drew- Good to see you out living..you actually sang a song...

Hoping your window stays wide open.

 

Jenny-  I know your having it rough right now with the return of symptoms..again..I say this is so unfair to all of us.

The mucus ball feeling in the throat comes back in everyone of my waves. I read somewhere that it has to do with the muscles and nerves in out necks. I hope you feel better soon.

 

 

Nova - As if chopping wood and carrying water isn't enough..now you are thinking of working some again..

If you're heart desires to work...go for it!!!!

 

 

Wishing you all wide open windows. We have lived this before...it too shall pass.

 

[[Fi...]]

Drew--windows like the one you just had (and hopefully are still in) are the reason I DIDN'T want to go back on the AD, Lexapro, that I'd been on briefly.  I knew it would probably save me from the pit time, but I also knew it would flatten me out so that I wouldn't have these clear windows to remind me of what it was going to be like to be myself again.  This rollercoastering pattern of healing is truly crazy-making, but at least you get to rack up some good times on the good days.  Hang in there.    And please, when the window ends--as I'm afraid it will--just know that you're healing and don't spend any time beating yourself up for whatever you ate/drank/did.    It's out of your control and realizing that is healing in itself.

[[Mo...]]

Hi Friends,

I've read back thru everyone's posts and see some amazing things.

 

Nova getting a weekend job for food.. Wow!

 

Beulah up and around even walking the zoo.

 

Green traveling her heart out, but feeling fatigued.

 

Coops daughter is getting married. (Sorry about the health fears and needing to move.. : (

 

Drew, I'm glad you had a good time out at the work event.  So sorry about your ex.  Yes, perspective is huge.  Thank you for sharing (even if I feel like I'm in an unending wave).

 

Sky-  You are better too!

 

What I'm looking for is similar suffering.  It's time to slap a label on mine.  I'm in a wave.  Haven't used that term in a long time.  Maybe not since last November.  I have things here and there but it's disappointing to be in a 'wave'.

 

This started in June just before leaving on vacation.  It's cranked up pretty good.  My head hurts, ear pressure.  (This is where I run to get my bp checked.) I've got hot flashes all day and night.  Panic sensations, anxiety.  My hips and thighs hurt.  I'm going to up my magnesium and spread out my vit c throughout the day in hopes to regulate the cortisol or whatever is going on. 

 

Hormones ??  Yes, I'm sure they are playing in here too. 

 

I'm grounded on the couch again and watching my church channels.  I love Charles Stanley right now.  He's so comforting. 

 

Anyone else having hot flashes still or at all.  Anyone feeling acute?  I do.  I feel ACUTE.  So tired but trouble getting deep sleep.  I want a full CT scan with the bells and whistles STAT.

 

Jenny21- a 3 month wave.  Is that where I'm at?  It must be.  Are your boys better?  One had surgery, the other was catching a cold?

 

My good friends Mrs. and Peace have been propping me up, but I needed my old friends and To see how you are. 

 

My mom left yesterday for Atlanta.  She repeated one of her healing stories to me that I need so desperately when this happens.  You have heard it before too but I will share it again.

 

At the age of 15, she was in one of the big California earthquakes.  After that she was terrified of the ground moving.  It followed her into adulthood.  Every job she worked or building she entered, her eyes would find a focal point on something hanging to make sure it wouldn't move. 

 

Around the age of 35, when we lived in Texas, mom said God told her to buy some comfortable shoes because she was going to Israel. 

 

Wow, she thought, so she went to my dad and asked if he wanted to go. He laughed and basically dismissed her.  She bought the shoes and kept them in a box in her closet.

 

A few years later my dad got a church in a very small, tiny town called Ruidoso.  At a church meeting of about 10 people a church woman stood up and said God told her to buy my mom a round trip ticket to Israel!

 

Dad was flabbergasted.  Mom smiled and said something like, 'you should have bought your shoes'.

 

She indeed made it to Israel.  At one point on the West Bank the military started carrying out gun fire exercises.  The lady next to my mom fell to her feet crying she would die, but mom looked at her saying, 'God bought me a round trip ticket and nothing is going to happen to us'.  The lady snapped out of it.  Later they were on the Turkey part of the excursion...notorious for earthquakes.  First stop was the catacombs. 

 

Mom could not bring herself to climb down the ladder.  Dejected she told the guide she had to stay up top.  The guide told her she had to stay near the bus driver for safety.

 

Mom hung out with her Polaroid taking pictures.  Some of the villagers came out asking for her to take their picture.  One even removed her face covering. 

 

Mom was laughing and having a good time when the tour group returned up top.  She was suddenly full of remorse for not going down to see the catacombs. 

 

The tour guide told her not to worry.  The next stop was another catacomb.  Poof, her fear was gone.  She was healed of her fear.  She went down in the next catacomb and many others.  Her words to me..' You never know the color of your healing.  One day it will come and that will be it.'

 

I hold onto these stories tightly.  She has many of them.  Her faith is so simple.  My grandma told me there are two people who don't have grand kids... The government and God. 

 

When I hear my moms stories and my faith is low, I ask God to allow a grand kid just this once.

 

[[dr...]]

Hi mommy.  Yes this is hard. No two bones about it.

 

Fj-I've given up a while back wether I had control.  I just do some "minor tinkering" to see if something may ease it a bit.

 

 

Woke up w the now usual cortisol rush at 5am and have stuffy head.  No longer in my window from last night but it was great to feel it.  Refilled my tank and wavering belief that comes on in a hard wave.

 

Hope everyone gets some relief.

 

Jenny-health fears any better?

[[Sk...]]

Hi Folks ...

 

Well ... I am either getting better or have completely lost it ... had a chat this morning with one the farmers that vend at the markets around Halifax ... I have bought from them for probably 15 years ... met them when they were just starting out ... good people ...

 

A smaller market opened a few weeks ago and these folks are having issues with getting folks to tend their stall for them at this market ... this is one of the retirement thingies I have thought of doing one day but I know I still could not handle being at the big market here for 9 hours every Saturday ...

 

So I spoke up and asked if they would consider me for the small market for 5 hours every Saturday ... and by the way I only work for food, not money ... we are going to talk again and they will look into this possibility ...

 

So, old Nova has opened his mouth and hopefully not fallen off the deep end ... we will see how this may unfold ... quietly I am excited and a little scared ...

 

Hope we all have a good day today ... 

 

 

A-M-A-Z-I-N-G !

 

I am just trying to catch up  on the thread but I am overwhelmed by symptoms and heat. But, I really had to comment on this beautiful post.

 

 

[[No...]]

Hi Folks ... did some painting around the apartment this morning ... one of my long neglected projects ... I can now climb a step ladder without getting dizzy and disorientated ... and the painting did not bother me ... perhaps another sign of getting better ...

 

Rainy and windy here today ... so hanging out this afternoon ...

 

Still wavey ... and now have some achy long unused muscles ... oh well ...

[[dr...]]

Good news nova. 

 

Hi sky...very warm here too

 

 

My stuffiness turned into damn head pressure which ramped up a bunch in a meeting I had.  Not much anxiety from it but it was so hard to speak as the pressure was so much.  Ugh.  This too shall pass. 

[[No...]]

Sky ... the heat sure doesn't help any ... hope it moves on soon for you ... I hope you get some good rest ... 

[[No...]]

Drew ... isn't that head pressure stuff such a joy? ... 

 

Pretty quiet here for a couple of days ... hope everyone is out and about doing their thing ...

 

They are promising us a thunder storm this evening ... hope we get it ... haven't had a good bang up storm for a while ...

 

Have a good evening everyone ... 

[[No...]]

Good early morning Folks ... I shut down early last night, so I am up early this morning ... I suppose all that exercise from painting yesterday helped me to sleep ...

 

Second coat today ... foggy and drippy here this morning ... rained most of yesterday off and on ... more of the same today ...

 

Hope we are all doing well ... 

[[be...]]

Well Nova, I don't know what the time difference is where you are at..but it's almost 1 am here..you're getting up and I'm going to bed.

 

I like doing things during the day that make me tired enough to sleep..if I just sit all day I don't sleep very well.

Nice to see you've got the energy and the muscles to paint..yep..getting back in the swing of things..healing.

 

Have a good day.

 

 

 

 

 

 

 

[[dr...]]

Nova...I just got into bed. 10pm here.  Hoping I get more sleep than you     Head pressure settled into a really tight neck/lower head crap. Reading with heating pad I just bought. Hoping and persevering for better times ahead.  Who knows it may be tomorrow. Night all

[[No...]]

Drew ... if you can find it ... an arnica cream may help with the neck stuff ... helps mine most of the time ...

 

Seems my head pressure is usually related to neck stuff ...

 

I shut down at 630 PM last night so I got some 5 hours ... will try for some more soon ...

[[No...]]

Hi Beulah ... hope you get a good rest ... I am usually an early bird, but this morning even the worms are still asleep ... 

[[je...]]

Hi buddies,

Well I can now say I was in a full fledged wave because my thinking has cleared, because I really was starting to think I had a serious illness and was dying. I'm in a clear window at the moment, and I can't believe how my thoughts are normal and not catastrophic anymore. I can handle a lot of sx, but when my POTS kicks in hardcore like it did, all bets are off. I literally could not breathe, and that is scary as hell-- at one point I thought I might have to go to the er. My breathing right now is so great, I can get a clear, deep, breath. I've had intense anxiety all day, and had a birthday party for my son of course I white knuckled through it, but I did it. It's 2:20 am and my window is open after a long week, so I'm just gonna sit here and breathe..  I hope it's still there in the morning..

[[No...]]

Jenny ... good news ... I hope this is still there in the morning for you too ... have a good rest ... 

[[No...]]

Hi ... got some more sleep ... now feel lousier than I did at 100 AM ... oh well ...

 

I blame it on the weather ... couldn't be anything else ... didn't get my thunder storm ... I so needed that thunder storm supplement ... 

 

Have a good Monday Folks ...

[[...]]

Hi all,

 

I’ve not posted for a while as I’ve been so overwhelmed with work and it has taken every little bit of energy (not that I have any), from my mind and body to deal with the demands of working. I really don’t know how I got through as 2 people are on leave and I am fairly new, plus having a malfunctioning brain. I did though and have to say I did well, although by Friday my brain was well and truly fried. Then I fell down the stairs that evening at home which has added to my joint and muscle pain. My feet just slipped from under me and I planked it all the way from top to bottom. I did think it was an excuse to go get checked out and maybe get a scan of my neck to make sure there are nothing wrong, not from the fall, just because it is so uncomfortable at times and I question if it is wd. Yesterday it was so bad, the head pressure was really intense, I have not had it that bad for a while. Today it has eased of a little, however I am so stiff and sore in upper back, shoulders and neck and overwhelming fatigue, my arms are lead like, fog,  crappy thoughts, basically I am in a wave.  Anyway I didn’t go to the ER (thank goodness)as I know all the neck problems started when I was reducing that God awful diazepam. It’s just hard to believe sometimes that this will go away. Also I could not risk mentioning wd to a medic, as I probably would have, knowing they would tell me it doesn’t exist.

 

I have been checking in from time to time to see how everyone is doing. It appears it is swings and roundabouts, the usual snakes and ladders pattern. I can really relate to you Drew at the moment and we are a similar timeline, not that any 2 people’s healing is the same but you can’t help comparing sometimes.  Nova, things sound so much better for you,  I feel so much positivity in your recent posts. I hope it continues. It’s just such a slow progress and things change, recede, come back. I believe it takes a real strength in character to go through this.  Sorry things have turned again for you Jenny. You have had a glimpse of a new beginning so hang on to that. So cruel I know to dangle the carrot like that.  Hope everyone is still kicking and surviving.