12-18 month support

[[Co...]]

Sky.. how are the vibrations?.....coop

[[Sk...]]

The vibrations, with the palps, stopped at some point, while we were at the hospital.

 

So I think I will get the rest of the day off and tomorrow business as usual. Who knows at this point ?

 

I am telling you, figuring out the paperwork at the hospital was making me panic. Hospitals are not friendly places, or at least not the ones I have been to.

 

I have joined a TBI facebook page. I don't dare post, I feel like an impostor,  I don't have a physical injury. Anyway, the  people there, have all our same problems and complaints. And there, too, there is a helpful community, trying to make up for the failings of doctors and society.

 

And how are you Coop ?

[[Co...]]

Sky, what is TBI?.. So glad that you are getting a break today.. yes, hospitals...so scary I hope to never have to be in one ever again..like Nova said, " I would have to be on the floor before I would ever go back to er". 

....I am doing better.. I think this wave is trying it's best to lift. Some ' off balance' sensation when I lean to the left and some garden variety anxity, but an improvement over the last 4 weeks...I will take it. ...love to you Sky...coop

[[Sk...]]

Sky, what is TBI?.. So glad that you are getting a break today.. yes, hospitals...so scary I hope to never have to be in one ever again..like Nova said, " I would have to be on the floor before I would ever go back to er". 

....I am doing better.. I think this wave is trying it's best to lift. Some ' off balance' sensation when I lean to the left and some garden variety anxity, but an improvement over the last 4 weeks...I will take it. ...love to you Sky...coop

 

Coop, TBI is traumatic brain injury. They have tons of advice that applies to us, to our condition. They even have jokes on the subject. Sense of community is so important when you feel so alone, as we do. ANyway, it's nice to read their updates.

 

Glad to hear your wave is lifting.

 

See, I can't actually say that with these 24 hour wave things. It's good in that, I get breaks sooner, but it works also the other way round !

[[Co...]]

Oh...man, I knew that.  guess cog fog is part of my morning today...yes, I certainly ly feel that my entire being has been injured in one way or another.  We are going to get better Sky.. .so many people say in thier success stories that somewhere around month 18 things took a decided turn towards consistent healing. ...here's to month 18...♡♡....coop

[[Ha...]]

I sure hope month 18 rocks, the back of my head is vibrating, last night was 5 hours of heart palps and eating attenol with panick attack, I'm so tired today... I'm in month 16, I'm still mad it is Tako g so long.

[[dr...]]

good morning...Sky...glad things went okay.  Sounds very stressful but you handled it great

 

I am in the zone of racing heart and breathlessness.  Very annoying but I have had it before and the last few times I freaked but trying to be the canoe this time.  I know everything is fine inside me and it is a very common recovery symptom.  My body fixing itself.  Gooooo body    

[[Co...]]

Happy....hold on buddie...I was in a terrible wave almost all of month 16....same thing, chewing crumbs of atenolol, panic attacks that I had not seen since month 6, all day health fears,essentially acute again. It is still hanging on, but trying to lift. I am not taking the atenolol anymore because the panic just came back so I am just trying to get through it now. Still have off balance feeling ,dizziness , had pressure and moderate anxiety. This has been a tough one. Holding on to the buddies here and the success stories. ...Come on as much as you need to Happy....we are here to support you.. coop

[[Sk...]]

Oh...man, I knew that.  guess cog fog is part of my morning today...yes, I certainly ly feel that my entire being has been injured in one way or another.  We are going to get better Sky.. .so many people say in thier success stories that somewhere around month 18 things took a decided turn towards consistent healing. ...here's to month 18...♡♡....coop

 

Coop, don't worry, we are all in this together. Yes, 18 seems to be an important month, but let's not put too much hope in it, just in case.

 

Remember when you started the 6-12 thread, ? We were all disappointed in a way, we had such nice expectations for month 6. LIttle did we know then !  Now, we are so much closer, though. 

[[Ha...]]

Coop u are a rockstar. Lol im am like ur shadow, like really. In the day I'm on but do have everything u described. Month 18 has to be the end of the brutal stuff. Yes eating g attenolol and fear last night I came close to 911. Fear of passing out, my feelings of a chest zap, or a chest pain freak me out. I drink coffee every morning, it don't make me have palps... so crazy...thank you for ur support!!!! It means allot to know we are not alone!! Hang in there everyone!!!

 

Hugs, haply me

[[So...]]

Oh...man, I knew that.  guess cog fog is part of my morning today...yes, I certainly ly feel that my entire being has been injured in one way or another.  We are going to get better Sky.. .so many people say in thier success stories that somewhere around month 18 things took a decided turn towards consistent healing. ...here's to month 18...♡♡....coop

 

Coop, don't worry, we are all in this together. Yes, 18 seems to be an important month, but let's not put too much hope in it, just in case.

 

Remember when you started the 6-12 thread, ? We were all disappointed in a way, we had such nice expectations for month 6. LIttle did we know then !  Now, we are so much closer, though. 

 

I like the way you put it Sky. I thought at 6 months and especially coming up on 12 months that things would be done.  Actually ignorance is bliss many times.  I'm grateful I didn't know how long it would take.  Now we've got that time behind us.  Hurray!

[[Gr...]]

Hi, I know everybody is still asleep but I just wanted to post a small update to get some support.

 

Today, my mother has to go to the hospital for her checkup on her arm. Because of her earache, she really can't hear, so I have to go with her to be her ears.

 

Unfortunately, we are going to the hospital where I was operated  and I had my Ct, where did such a callous and dangerous job of it. Most of my hallucinations took place there and i was always trying to run away from the hospital, at night, even though I was so weak from the operation.

 

So, as you can tell, a lot of unpleasant memories.

 

I also worry about how my mom's bone will have healed, such a sloppy job has been done until now.

 

And, last but not least, I have vibrations going on.

 

Speak later, hope things go for the best.  Wish you a day of healing to all of you. 

 

Sky, at some point you will make peace with the memories.  I think that comes with acceptance of this whole thing that happened in our lives.  And I think it's a hell of a lot easier to let go and move on once we feel better, are healed.  In the middle of a wave, everything is distressing.  Good luck with the whole day, and hoping her arm sets well.

[[Co...]]

DREW,. .I am following you buddie, anxiety, off balance sensation, d/r.  Just trying to float above it.. Staying busy ..busy busy. I cleaned my house..now cleaning it again. The dog is begging me to stop taking him out because his legs are tired now. Lol...

....SKY...yep, hoping for better at month 18, but pretty much prepared to go the entire 24 months.

......Happy... yep, 3 weeks ago I had a panic that had me reaching for the phone but the thought of er was more frightening than the thought of dying..lol...and like you, I have been through enough panics to know that they end ...takes everything I have to make myself believe it. I am so hopeful that this is that famed last wave from hell. Are you getting d/r and swaying sensation too?...

.....Wishing everyone sunbreaks....and be brave...we are getting through this....coop

[[Gr...]]

Oh...man, I knew that.  guess cog fog is part of my morning today...yes, I certainly ly feel that my entire being has been injured in one way or another.  We are going to get better Sky.. .so many people say in thier success stories that somewhere around month 18 things took a decided turn towards consistent healing. ...here's to month 18...♡♡....coop

 

Coop, don't worry, we are all in this together. Yes, 18 seems to be an important month, but let's not put too much hope in it, just in case.

 

Remember when you started the 6-12 thread, ? We were all disappointed in a way, we had such nice expectations for month 6. LIttle did we know then !  Now, we are so much closer, though. 

I like the way you put it Sky. I thought at 6 months and especially coming up on 12 months that things would be done.  Actually ignorance is bliss many times.  I'm grateful I didn't know how long it would take.  Now we've got that time behind us.  Hurray!

 

Sky, your brain works better than you think it does.  We just feel like there's smoke and empty space up there, it does function better than that.

 

Yes, I do remember the 6-12, and how horrifying it was to think that w/d could possibly last more than the six months it already had, how shocking that was.  I guess our poor brains were in denial, could not handle the thought of doing this for the period we have.

 

Yes, Coop, this 18th month is the one with all the expectations, but I think we should heed Sky's comment, and not put all of our hopes in one place.  We're going to heal, but it's a real balancing act until we do.

 

Head and facial pain, gone.  Feel a little more clear in the head, and got out of bed easily, feeling more like me than I have in a while.  It's really been a while because I barely recognize this self.  At this stage, can't tell if it's going to last for hours, days.  Better do the laundry!

 

Wishing everyone some mental clarity and sunbreaks

[[Sk...]]

Oh...man, I knew that.  guess cog fog is part of my morning today...yes, I certainly ly feel that my entire being has been injured in one way or another.  We are going to get better Sky.. .so many people say in thier success stories that somewhere around month 18 things took a decided turn towards consistent healing. ...here's to month 18...♡♡....coop

 

Coop, don't worry, we are all in this together. Yes, 18 seems to be an important month, but let's not put too much hope in it, just in case.

 

Remember when you started the 6-12 thread, ? We were all disappointed in a way, we had such nice expectations for month 6. LIttle did we know then !  Now, we are so much closer, though. 

I like the way you put it Sky. I thought at 6 months and especially coming up on 12 months that things would be done.  Actually ignorance is bliss many times.  I'm grateful I didn't know how long it would take.  Now we've got that time behind us.  Hurray!

 

Sky, your brain works better than you think it does. We just feel like there's smoke and empty space up there, it does function better than that.

 

Yes, I do remember the 6-12, and how horrifying it was to think that w/d could possibly last more than the six months it already had, how shocking that was.  I guess our poor brains were in denial, could not handle the thought of doing this for the period we have.

 

Yes, Coop, this 18th month is the one with all the expectations, but I think we should heed Sky's comment, and not put all of our hopes in one place.  We're going to heal, but it's a real balancing act until we do.

 

Head and facial pain, gone.  Feel a little more clear in the head, and got out of bed easily, feeling more like me than I have in a while.  It's really been a while because I barely recognize this self.  At this stage, can't tell if it's going to last for hours, days.  Better do the laundry!

 

Wishing everyone some mental clarity and sunbreaks

 

I agree that we are much  better than we realize, but there are neurological issues here and there, little slips of the brain, l ike my writing now, or having a hard time understanding instructions. There are things that can happen any time, we are just more aware of it, is all. I feel self conscious about it, clearly. Because I know about the damage, if I weren't sick, I would not give any importance to the fact.

 

When I was in tolerance, I remember hiding some golden items and never being able to find them again. At the time, i worried about my memory being that bad about something that important. Now I know it was the benzos just ravaging my brain. Who knows, maybe  some day I will find that gold.

 

In my ct, in acute, I knew I had a brain injury, but I still did not really know. I am reading my diary from exactly a year ago. Even though I knew what was going on, I really had no idea and I kept trying to do things that were totally beyond me.

Denial, yes, quite.

 

I am going to take my dog out now, speak later.

[[mr...]]

Well Sky, I posted something to you this AM, but it didn't go for some reason Oh well ~ long story short, I believe in you & send ya some love

 

Happy Me, Drew, Coop...same song, different day, right? Only we know the tune now, and can sing its song & dance before it plays out. One day at a time, we WILL be the Victors over this all!! Amen!

 

OK, back to work for Mrs.

 

Mrs.

[[dr...]]

I agree with all the comments about lowering expectations...I am done putting a timeline on this.  All I know is that we will feel better every six months.  Those are my big milestones.

 

Coop-I never heard of a dog being too tired....well only a small dog with tiny legs

[[Sk...]]

I agree with all the comments about lowering expectations...I am done putting a timeline on this.  All I know is that we will feel better every six months.  Those are my big milestones.

 

Coop-I never heard of a dog being too tired....well only a small dog with tiny legs

 

My thoughts exactly ! I just got back from what seemed, to me like the longest walk with my Jaime, and I can assure you she is ready for another walk all over again !

 

Btw, my puppy is small with tiny legs !

[[dr...]]

I used to dog sit my friends mini Yorkie...She would just lay down mid walk and refuse to move.  You had to lift her and carry her the rest of the way.  Cute little bugger though

[[So...]]

Yeah, they are very cute.  We have a "Morkie" that adorable.  Half Yorkie, half Maltese.

[[Sk...]]

Well Sky, I posted something to you this AM, but it didn't go for some reason Oh well ~ long story short, I believe in you & send ya some love

 

Happy Me, Drew, Coop...same song, different day, right? Only we know the tune now, and can sing its song & dance before it plays out. One day at a time, we WILL be the Victors over this all!! Amen!

 

OK, back to work for Mrs.

 

Mrs.

 

Mrs, thanks so much. It's always nice to see you around here.

 

Same song, different day,  indeed ! Have a  nice day at work girl !

[[dr...]]

Socal...we are almost done with another work day and we should be proud of ourselves.  good job!

 

Good job to everyone else too....this is the hardest thing we will ever do...think of how much we will appreciate all the little things we used to take for granted.  Eventually this experience will be a gift that we would have never had.  Envison it

[[So...]]

Love the positive vibes, Drew!  I'm envisioning. 

[[je...]]

Sky-- so sorry you had to go back to that hospital, that must have been very hard. I hope your feeling better now, you are very strong.

 

I agree with the timeline thing, its just too disappointing when you reach a specific milestone only to still be in w/d. I'm in month 18 and I think I feel worse than what I expected to be, so what does that tell you lol. ...

[[Co...]]

Drew, I really lIke that view of getting better...." every six months we get better" .  I am probably putting too much expectation on month 18...I am just so tired of this. I had a panic this morning and the residual anxiety has been ramped for the last 4 hours ...shakes, dizziness the whole thing. I even went to my physician's lab to do a thyroid draw. I have nodes in my thyroid and they can produce extra thyroid causing sx similar to w/d I K ow it's probably w/d but at least it will give me reassurance . They offered me 5mg of valium...of course I turned it down.  I did take another 6 mg of atenolol....I just don't get it...I have gone months without all day anxiety and panic.  ...sorry.. a rant going on here...d/r and dissociation is thick...what did we ever do to deserve this ...except to take a medication prescribed by a physician who was supposed to help us......coop