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I have heard that Brain on fire has been going through some rough times lately, involving surgeries, PT, and a challenging recovery. This community has meant a lot to BOF, and BOF has provided a lot in return. 

Best wishes from me, BOF. Get well soon and rejoin us when you can.

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Thank you CHfather, appreciated more than I can express. I will come to this post on the days I need to be reminded. I will contribute to this forum again just as soon as I am able. In the meantime I'd like to encourage other CHers to share & contribute.

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All the best to BOF !

PF wishes to all forum users in these challenging times.

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Interesting week, wanted to ship me off to a nursing home late last week, friends whisked us out of here. Helps he is an atty & has been quadriplegic for over 20yrs. Back home now, was told I'd never dance again. So, I blew PT away yesterday. Today was the last day of the top portion of my custom fitted body cast. Still have the bottom, braces on both hands, various durable medical equipment & at least one more major surgery followed by more intense PT. My spirits are high & I remain Chronic Cluster Headache pain free. Love & pain free wishes to all!

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Hugs Brain!!! Keep up the fight. You definitely know how to do that!!! 

Love you!

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Brain how the heck are you doing?

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Posted (edited)

Thanks for asking!! I'm coming along. The pain is pretty bad. I continue to resist meds for it. Last night I decided I needed to go for a drive (tough pain day). I surprised myself. I drove around for a couple of hours with my music playing loudly. Periodically punching my accelerator. Few on the roads I traveled. I know those roads & their nuances well enough to safely fly. It felt good to drive, it felt great to fly! First time I've driven (or been in my car) since the surgery. I'll tell my PT guy & nurses when they come Monday, hoping they don't beat me to a pulp :lol:

Edited by Brain on fire
Clarification
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Posted (edited)

Last night was my worst since the surgery. This evening I gave myself permission to have a bad day & cried for myself for the first time since my husband's death. I am unsure if I'll be able to continue contributing here as my visual tool for gauging if I am being helpful, The All Time Leader Board has rolled me completely off :unsure:

Edited by Brain on fire

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Hey wonderful.

Sounds like you're having a tough time atm. I'm not coming to the forum much at the moment, other projects taking up my time. But you're in my thoughts a lot, and I hope you have a speedy recovery. 

Stay strong, and it's Ok to cry. xx Mox

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Sorry Brain, what do you mean by 'bumped'? 

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Your help will always be needed, there are other areas where there are no indicators of helping efficacy or such ...helping others should and can not be ranked or listed or top-listed.

Maybe an option to turn any "leader boards" off could help some of us.

As long as there's cluster headache, there's need for helpful family members

Thank You for all that you do

Peace, Love and I hope you feel better soon :)

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I did not even know there was a leader board, I just judge helpful by being here and being another person in the trenches. So, in that metric, you surely are.

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Posted (edited)

Thanks @Tony Only & @devonrex. I'm visual, I used the All Time Leader Board (and other Leader Boards here) as a quick tool. For me it isn't about competition at all, it just helps me to see it. I hope that is understandable. Apologies if it isn't, my current pain level makes it difficult for me to do a lot of things. @spiny I had been 4th on that one, I'm not on it at all now.

Edited by Brain on fire
Clarification
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No apologies necessary, I only meant, just being here is to me, helpful. :)

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That is a rolling tally for a certain period. So, if you are not posting very often, you don't get the likes and such that create the tally. 

Since your posts are well loved, you get a lot of 'likes' and stuff! :wub: 

Heal well, okay? You are having to deal with a lot!

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I'll heal from all of it, it is what I do. It is what we all need to keep in mind. There is hope, there is healing, there is love. We could use more of the later.

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I thought briefly it was the math learning disorder. Nope 2+2=2 & the numbers don't add up.

624, number 4 on the All Time has just over 300. Oh well. Signing off.

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It's probably some odd ratio of posts and likes and such. Pay no attention to leaderboards :P it would be nice to see more than 4 though.

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Posted (edited)

Discovered why & quick check of my profile saw my research was noticed. That IS funny! :lol:

Edited by Brain on fire
Sense of humour intact

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Why sad Bof? I've been busy with work and have only been here marginally late at night during my o2 sessions hopefully your practicing your dance moves.

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I am saddened the repercussions remain & no one will correct this. I am leaving this support group. To the great joy of my punisher who is nothing but another bully on what was once a great support group. Celebrate away bully, you were allowed to do this. Abuse of power is rampant here too. 

Edited by Brain on fire

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