12-18 month support

[[Co...]]

Hi all...I took today off...really bad headache stated at 3am.  Just curious why evenings I almost always feel better if not normal.  Seems like a common occurs ce for many.

 

.......Drew... hope your headache has let up....I don't think I could deal with them as determinedly as you do....Hope they disappear with healing....feel better Drew...  onward.....coop

[[dr...]]

It has let up.  I took two Tylenol around noon and slept.  Just have that hangover feeling like my head is heavy.  Onward we go...

 

 

I think I'm just about to pour the water over the wicked witch or maybe I'm just being screwed w by The Wizard right now. 

[[Co...]]

It has let up.  I took two Tylenol around noon and slept.  Just have that hangover feeling like my head is heavy.  Onward we go...

 

 

I think I'm just about to pour the water over the wicked witch or maybe I'm just being screwed w by The Wizard right now. 

 

.....Tylenol helps your headache?....that's wonderful!....Yeah, it takes awhile for the Wicked Witch to melt...but she does... Hope the headache is gone for weeks and you get some peaceful sleep tonight.  Really nice to see you Drew.  Wishing you a better tomorrow...  coop

[[pe...]]

Help! I'm back at work full time. I started back a handful of days ago and my brain is falling apart, feels like it's filled with rocks and other impediments. I am thinking more slowly, moving more slowly and way more confused than I was before I went back to work. I am so discouraged to be starting yet another school year with this underwater feeling. I don't know how to do this, the making appropriate work choices piece. I really feel like I shouldn't be working, because it's not working. But here I am because I thought I might be better.

 

This brain sensation is new. In a way I'm more awake and alert, I guess. But my head is thick with cotton. Is this something others can relate to? What have your cognitive symptoms been like? I just don't want to feel alone in this. My sense is I would be best off in bed in a small quiet room. At 19.5 months out.

 

Love, help, encouragement, a 'pull yourself up by your boot straps'  - I'll take whatever you've got.

 

:'(

 

Peace2

[[No...]]

Peace ... you are not alone in this ... almost 20 months out ... remarkable given al that you have maintained through this ...

 

And, although you feel underwater right now, you can get through this ...

 

I still have days where I feel like I am moving through sludge ... and days where that lifts for a while ...

 

One of the fascinating things about this process is that we each seem to find our "pattern" through this stuff ... and we are all different ... some work, some don't work, some work for a while and then retire ... some have families, some don't ... some are alone, some have many connections ... some do this, some do that ...

 

Our common feature is that we stick with this process, live one day at a time, and we get through this stuff ... some days way messier than others ...

 

And ... you are healing ... for all who can allow this process the time it needs, and can get through their days in whatever pattern they find themselves in, we will get through this ...

 

Just being where we are today, doing what we can ... that's who we are, that's what we do ...

 

Be Well ... 

[[No...]]

Good Morning ... feeling a bit more connected this morning ... don't have that bloated, Michelin-man feeling ... went to sleep with it, woke up without it ...

 

Going for walk ... see what the day brings ...

 

Wednesday is here ... I insist it be a good day ... 

[[Ko...]]

Hi Buddies,

 

I'm almost finished with month 21 and still suffering. Getting no windows or sun breaks at all.  My legs are stinging and hurting from the bone and that keeps me awake. Its now 3:30 am and I'm still awake. Weird thing though, if I sit down to read my iPad I fall asleep sitting up. Then I try to lie down and can't fall asleep. I'm like Green, sleeping in the day.  Can't  walk very far because my butt muscles cramp. Then I get edema in my legs & feet. As you can see, I'm having a lovely time.

 

TM - about the prednisone. I took it when I was in tolerance to calm my burning skin. It worked. It can cause insomnia and most people feel energetic on it. I think it might effect the GABA neurotransmitters so you need to consider that. But having a burning mouth must be torture so getting a break from that it's worth a try I think.

 

Green - So sorry you've got the dizzy nausea thing. What a pisser. Feeling so good and then have that

Crap come back. I hope it doesn't last long and you can continue towards healing without the torture.

 

Nova - congrats on 22 months. I hope you begin to get more good days than bad. As alwYs thanks fir your philisophical insight,

 

Coop - glad your feeling somewhat better. Hope your stomach begins to heal.

[[No...]]

Korbe ... sorry you are still having so many issues ... and you are getting better, although it probably does not feel like it ...

 

I am still sleeping in the recliner ... I had to go to that about two years ago because of the chemical storms when I laid in bed ... and also the sense of suffocating when the benzo belly bloat was very bad most of the time ...

 

I am still not comfortable to the point where I can "relax" laying in bed so I continue to use the recliner ... it does give my legs good support ...

 

I have pedal edema in both legs below the knee ... which showed up some six years ago ... no one has been able to figure out why it is still around ... thankfully it does not cause me any pain ... I use knee high compression stockings for 12 - 16 hours a day ...

 

Hope some of this clears up for you soon ... you deserve a break from this stuff ... 

[[be...]]

Good Morning ... feeling a bit more connected this morning ... don't have that bloated, Michelin-man feeling ... went to sleep with it, woke up without it ...

 

Going for walk ... see what the day brings ...

 

Wednesday is here ... I insist it be a good day ... 

 

 

Morning Nova, I love when I wake without the symptoms from the day before. All day yesterday the head pressure was getting the best of me...now it's gone.

 

Well...if you insist Wednesday be a good day...then it shall be.

 

Enjoy your more connected walk.

[[be...]]

Hi Buddies,

 

I'm almost finished with month 21 and still suffering. Getting no windows or sun breaks at all.  My legs are stinging and hurting from the bone and that keeps me awake. Its now 3:30 am and I'm still awake. Weird thing though, if I sit down to read my iPad I fall asleep sitting up. Then I try to lie down and can't fall asleep. I'm like Green, sleeping in the day.  Can't  walk very far because my butt muscles cramp. Then I get edema in my legs & feet. As you can see, I'm having a lovely time.

 

TM - about the prednisone. I took it when I was in tolerance to calm my burning skin. It worked. It can cause insomnia and most people feel energetic on it. I think it might effect the GABA neurotransmitters so you need to consider that. But having a burning mouth must be torture so getting a break from that it's worth a try I think.

 

Green - So sorry you've got the dizzy nausea thing. What a pisser. Feeling so good and then have that

Crap come back. I hope it doesn't last long and you can continue towards healing without the torture.

 

Nova - congrats on 22 months. I hope you begin to get more good days than bad. As alwYs thanks fir your philisophical insight,

 

Coop - glad your feeling somewhat better. Hope your stomach begins to heal.

 

Hey Korbe, sorry you are still having it so rough. I also still suffer with the leg issues and a couple of days ago I bought some Blue Emu oil in hopes that it would help with the burning and nerve pain.

I think it's helping some, they don't seem to burning so bad.  I read this on another thread that someone posted it helped their legs..so I'm trying it.

I agree, the tight painful butt muscles make it hard to walk..and sitting after walking..ouch!!

 

This leg stuff can't last forever.. but it sure seems it some days.

 

Hope you can get some relief.

 

[[No...]]

Hi Beulah ... had a pretty good walk ... it seems to be cooling off today ... and maybe some rain later and tomorrow ...

 

Not a bad day ... got those funky ear pressure thingies ... when I pull down my ear lobes the pressure goes away for about a minute and then slides back ... wonder if there is some way to weight the ears down ... 

 

Seems a sign that it is more of the contraction stuff ... can actually feel it sliding back up behind my ears ... goofy ... 

[[Co...]]

Help! I'm back at work full time. I started back a handful of days ago and my brain is falling apart, feels like it's filled with rocks and other impediments. I am thinking more slowly, moving more slowly and way more confused than I was before I went back to work. I am so discouraged to be starting yet another school year with this underwater feeling. I don't know how to do this, the making appropriate work choices piece. I really feel like I shouldn't be working, because it's not working. But here I am because I thought I might be better.

 

This brain sensation is new. In a way I'm more awake and alert, I guess. But my head is thick with cotton. Is this something others can relate to? What have your cognitive symptoms been like? I just don't want to feel alone in this. My sense is I would be best off in bed in a small quiet room. At 19.5 months out.

 

Love, help, encouragement, a 'pull yourself up by your boot straps'  - I'll take whatever you've got.

 

:'(

 

Peace2

 

 

.....Oh Peace.  That stinks....the cotton head, seems like everyone has it from time to time throughout w/d. I hated it because it made me feel so disconnected and slow slow muddled thinking. At just about 22 months it has cleared significanrly, but I still get 'pop up' periods of it once or twice a week. ...I agree, crappy timing to be feeling like that. Was it better throughout the summer?.    You are going to shake it Peace, but I know you were really thinking that this school year was going to be more healed... and I think it will.  It has to be better than last year.  ...Yes can't we just sleep through this in a small cozy buffered room? ...

.....I am amazed that you are 21 months out..  you are crossing the finish Peace. Your head will clear.  You will continue to be the wonderful teacher that you are.  One day at atime....each on its own.... that will get us there.. 

.....It is so goid to see you here, though I wish you weren't having a funk right now...  love to you friend.  .coop

[[be...]]

Hi Beulah ... had a pretty good walk ... it seems to be cooling off today ... and maybe some rain later and tomorrow ...

 

Not a bad day ... got those funky ear pressure thingies ... when I pull down my ear lobes the pressure goes away for about a minute and then slides back ... wonder if there is some way to weight the ears down ... 

 

Seems a sign that it is more of the contraction stuff ... can actually feel it sliding back up behind my ears ... goofy ... 

 

Glad you enjoyed your walk. You silly rabbit...you know you have to put earrings on those ears to weight them down.

[[Co...]]

Nova... the mysteries of the night....go to bed one way, wake up completely different.....works both ways. I went to bed in an Effortless Mind state....tossed and turned all night , fell asleep and woke up in a twirl of chemical anxiety and total body pain.  Got up had my pretend latte .. and now a window is opening up.  More changes than a burlesque dancer. Round and round I went, but landed on a window so I am going to take advantage of it..  ..So glad you are having a better day today. What's on the menu at Nova's Kitchen....?

.....onward ....have a good day Nova.    coop

[[Co...]]

Korbe, so sorry you are having so much pain . 21 months is such a long way to come. Lavender Epsome salts bath soaks and Arnica cream help me temporarily , but even temporary relief gives you a chance to catch your breath. ...Korbe, you are going to heal. It has only been in month 20/21 that I am consistently feeling better. I get some good windows now and even some Effortless Mind days, but they rarely last more than a day at a time. In Feb. I had a five day stretch of windows, but just one or maybe 2 at a time since..  however they seem to be coming closer together. 

.    I am thinking of you Korbe and wishing you some relief.  And some sleep.  coop

[[Co...]]

Beulah..  you sound good.  Hope your entire day stays easy and on the side of healing. What are you cooking today.  As you can see I am growing restless with the oatmeal main course followed by brown rice/blueberries dessert, but my gut is calming down more .  So it's worth it.

    Wishing you a goid day Beulah.  Hope you get to sit in your garden and have lavender tea.  On my way to get the dog out and then to help my ex find a new condo.  I love house hunting and apartment viewing so I am looking forward to it. 

..  love to you Beulah.  coop

[[...]]

Ok, this has been one crappy day. I'm going to vent and that is ok as it's better out than in. There is no self pity here just sick and tired of being sick and tired.

 

Had a spa day with my daughter yesterday and it was good. She's had an interview for a part time job first thing so I was pleased she was being treated as she deserves it for all the support she gives me. Yes I would have enjoyed the treatments better if I had no sx, I made the most of it though and swam and used the treadmill (walking). Slept well and then slammed with fatigue, I'm so sick of this now as it feeds all the negative thinking. Went for a long walk at 3, yes it took me all that time to get myself together and the walk didn't help. My mind was running away the whole time as some other stress had come into play, mainly about other people and how they can hinder recovery. No suprises then that when I got home there were lots of tears (honestly I'm not a usual cry baby). To end the day my daughter didn't get the job and of course this has had a massive impact on me. She is being sensible about it but it has sent my ruminating wild. I just want this to stop, I feel dragged down and I'm trying so hard to be positive. 

 

I know this is a lot of complaining but I use this thread to sort my rubbish sometimes and I appreciate the support 

 

[[be...]]

Beulah..  you sound good.  Hope your entire day stays easy and on the side of healing. What are you cooking today.  As you can see I am growing restless with the oatmeal main course followed by brown rice/blueberries dessert, but my gut is calming down more .  So it's worth it.

    Wishing you a goid day Beulah.  Hope you get to sit in your garden and have lavender tea.  On my way to get the dog out and then to help my ex find a new condo.  I love house hunting and apartment viewing so I am looking forward to it. 

..  love to you Beulah.  coop

 

Hey Coop, I'm making ham steaks, yams and broccoli salad. I just took the yams out out of the oven and I'm gonna put a little brown sugar and butter on them.  I also made some Apple fritters for later and I hope I'm able to stop at one.

Have not had mashed potatoes for three days..I think that's a record. I guess the yams are taking the place of mashed.

Since we are having cooler temps I'm craving pumpkin pie, chili, Turkey and stuffing...all of the cool weather foods.

They have already set out the candy corn in the stores...so pleasing to my eyes...I love to look at it whether I eat it or not.

Fall is almost here...bring it on!!

I also like to look at houses and apartments. We toured a million dollar house a few years at a country club in our area...omg, it was decked out. My husband and I had fun sitting on the pool deck..we called each other Biff and Buff. Nice to see how the wealthy live..but really wouldn't want to be them.

 

I'm so glad your gut has calmed down. Mine was slow healing but I think as long as I keep food on it and somewhat bland diet for a while longer it will continue to heal.

 

Let us know how the house hunting goes...hope you have some fun.

[[dr...]]

Million dollar home isn't much here at all.  Pretty sad but it's entry level.

 

Vent away marj!  I will join you.  I've been tracking my symptoms more reliably now and I've gotten a bad headache each of the last three Tuesday's.  Like clockwork the next day is that damn insane chemical anxiety and hair trigger panic.  Sat at my desk and while on the phone w clients I was getting waves of panic !  Wtf!  I also had trouble breathing and was so boaty I was afraid to get up to go to the bathroom.  I stuck out I half day and then left.    These days are not a bit easier.  What is easier is that I know they only last a day or two.  Guess that's progress. 

[[Co...]]

Beulah..  you sound good.  Hope your entire day stays easy and on the side of healing. What are you cooking today.  As you can see I am growing restless with the oatmeal main course followed by brown rice/blueberries dessert, but my gut is calming down more .  So it's worth it.

    Wishing you a goid day Beulah.  Hope you get to sit in your garden and have lavender tea.  On my way to get the dog out and then to help my ex find a new condo.  I love house hunting and apartment viewing so I am looking forward to it. 

..  love to you Beulah.  coop

 

Hey Coop, I'm making ham steaks, yams and broccoli salad. I just took the yams out out of the oven and I'm gonna put a little brown sugar and butter on them.  I also made some Apple fritters for later and I hope I'm able to stop at one.

Have not had mashed potatoes for three days..I think that's a record. I guess the yams are taking the place of mashed.

Since we are having cooler temps I'm craving pumpkin pie, chili, Turkey and stuffing...all of the cool weather foods.

They have already set out the candy corn in the stores...so pleasing to my eyes...I love to look at it whether I eat it or not.

Fall is almost here...bring it on!!

I also like to look at houses and apartments. We toured a million dollar house a few years at a country club in our area...omg, it was decked out. My husband and I had fun sitting on the pool deck..we called each other Biff and Buff. Nice to see how the wealthy live..but really wouldn't want to be them.

 

I'm so glad your gut has calmed down. Mine was slow healing but I think as long as I keep food on it and somewhat bland diet for a while longer it will continue to heal.

 

Let us know how the house hunting goes...hope you have some fun.

 

......

Beulah...  your dinner sounds so good. I have graduated to noodle and chicken cassarole with no cheese...at least it's a change. Sx are less ....sounds like your belly is improving too.

...Yes , I had a really fun time looking at condos..  we looked at some completely out of his budget.  .just for fun. Wow, I didn't know I was living with so much inconvience.  Not any in the million range but some pretty fancy ones on golf courses.

  ...It was so goI'd to do something just for fun and feel the enjoyment of it. Sat we are taking our grandsons to an air show ( the oldest one wants to be a pilot... how did that happen, just yesterday he just wanted to get the hang of his bike without training wheels.  life goes by so fast)

      How was your day? .  You are cooking up a storm so I hope that means your day was on the up side of healing.  Enjoy your dinner.  coop

[[Co...]]

Million dollar home isn't much here at all.  Pretty sad but it's entry level.

 

Vent away marj!  I will join you.  I've been tracking my symptoms more reliably now and I've gotten a bad headache each of the last three Tuesday's.  Like clockwork the next day is that damn insane chemical anxiety and hair trigger panic.  Sat at my desk and while on the phone w clients I was getting waves of panic !  Wtf!  I also had trouble breathing and was so boaty I was afraid to get up to go to the bathroom.  I stuck out I half day and then left.    These days are not a bit easier.  What is easier is that I know they only last a day or two.  Guess that's progress. 

 

......Wow Drew, do you live in San Fransico....or Sausalito. . or Seattle??....  So sorry your headaches are once each week with residue anxiety and panic.  It's so good that you can go home as needed. At least you have arrived at that stage where you ride it out knowing that your pattern is a couple of days and then better. It took me a long time to not totally lose it every time a wave washed me out to sea. ....and you have such a well stocked tool kit, with massage, meditation, hot soaks etc.  You have had tough times with this and you always come out on the other side with hope, confidence and positivity.  You are going to land on the other side of this.  And we are all going to do such a happy dance for you.  What are you cooking tonight...  Hope you are feeling better.    coop

[[dr...]]

I used to live in SF.  Now a working class neighborhood twenty minutes south.  Most people who own here couldn't buy their homes now.  Not even close.  Sad...

 

I'm getting Thai food.  No cooking for me tonight. 

 

I'm hoping tomorrow is better. It usually is.  Just watching videos/reading stories of how everyone heals.  Have to keep my head in the game to what little bit I can. 

[[Co...]]

Marj.....vent away friend.  Some days are just so hard and our strategies fail us.    The intrusive negative bizzaro thoughts that seem to not originate in our own minds spook us out and drive us crazy. Intrusive thoughts have been one of my worst sx since acute. At the closing of month 21 I still get bouts of them....but it's so much better than it was even 5/6 weeks ago. They will eventually become less . .  Sorry your daughter missed out on the job, but they are so resilient at thier young ages, she will bounce back and be ready to take on the next interview. ..  I honestly think venting and kicking the trash can be helpful in releasing some of the stress of sx..

  Marj you have so much 'punch back' in your stance. You are winning this.  Keep right on whining and venting.  Tomorrow or the next day it will be me.  Every day you are getting closer. I know you are sick sick sick of this, but the thing is.  You never fail to keep going forward.  That's going to get you all the way....Hope you have some chocolate stashed away somewhere for yourself... you deserve it. 

  .Wishing you a much better day tomorrow.  coop

[[dr...]]

Coop...you really sound soooo much better.  You give me hope

[[pe...]]

Hi Coop and Nova,

Thanks, thanks, thanks! I try so hard to go about my business, but when I need ya, I need ya!

 

I'm glad to hear you're feeling better Coop. That is wonderful news. And Nova, you are steady and kind I didn't realize you've been sleeping in the recliner all this time. I remember when that was a newer place where you found relief. Whatever gets you some rest!

 

I'm not posting much, but I do appreciate your input and am following along as best I can and love hearing about your healing.

 

Peace2