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Let me be Frank about CRPS

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Old 03-01-2018, 11:29 PM   #1
FrankB
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Default Let me be Frank about CRPS

Howdy.
I'm a guy several years into a raging beast known as CRPS. One arm and one leg are severely damaged. I've learned a lot about the disease. When I found this site I decided to join after noticing that this is not Facebook. No offense, but I think written communication is paramount and so much slang or lack of diction demeans the message. This is important and we as a community do not need to lose credibility or focus due to poorly communicated discussion. The world needs to take us seriously and when they see substandard elocution they tend to dismiss the message. The people, who, I think, can give us the most help, tend to be of above average intellect and we need to make sure they hear us clearly and that our words are understandable to all.

My name is not actually Frank. But that's what you get to call me. I tend to keep personally identifying information out of sight whenever possible, but I have no intention of hiding anything I've learned that may be of use to others who are afflicted. I'm known to be a very generous person with a wide variety of skills and experience. This disease is trying to kill me and I'm fighting back with every last bit of anything I have to use as a weapon.

I'm angry with the disease. I'm heartbroken at the devastation I have seen within families and to the personal spirit. I'm disgusted with flippant doctors and a great deal of the public who only recognize patently obvious signs. I'm disgusted that the medical machine has put rigorous paperwork between our doctors and our care. If I think I can help I am going to try: it could spare someone else.

Knowledge is power and my volume control goes to eleven. Thanks for letting me join.
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shelbie4u (03-02-2018)
Old 03-02-2018, 12:50 AM   #2
Jo*mar
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Hello & welcome.
Forums and support communities do have a few plus's over FB...for sure..
Like the Sticky threads, years of saved & searchable info from past postings..
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FrankB (03-02-2018)
Old 03-02-2018, 01:03 AM   #3
FrankB
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The reply window is better by a long shot.
I'm relegated to using a tablet most of the time nowadays and being no stranger to forums I like this better than FB.
I noticed when lurking here that it stays on track.
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Old 03-03-2018, 04:50 AM   #4
kiwi33
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Hi FrankB

Welcome to NeuroTalk; I hope that you will find that community as knowledgeable and supportive as I have .

One thing to bear in mind is that you can use the Search command
(https://www.neurotalk.org/search.php) to find topics which may help you. You can customise a search to a particular form, eg the CRPS forum.

Best wishes.
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Old 03-03-2018, 04:13 PM   #5
FrankB
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Thanks Kiwi.
Vbulletin is familiar territory for me.
I'm thrilled to see a forum dedicated to CRPS.
I've noticed that this site stays focused. Not that it is easy to go off track when the discussion involves such serious matter.
Right now I've had to seek refuge due to what appears to be an oncoming flare.
Within the last year I think I have managed to identify all the puzzle pieces here and I'm trying to absorb all that and plot a forward course within the confines of my "new normal".
I'm still the same person who got here via my old normal. It hurts to think about it but at least I now know some things. The first several years with CRPS was and still is the scariest roller coaster ride I have ever been on. I LOVE roller coasters because I know that the ride eventually ends. CRPS is a whole different experience. I might and do hurt like all get out. I make lots of awful noises: they are an automatic response and I can't control the outbursts. I can't hide them either. People in public take notice.
Deep down, I think my problem is solveable. If that can be done with me I'm sure we will learn things that can be applied to others.
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Old 03-03-2018, 04:28 PM   #6
FrankB
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How long does it take before my posts become unmoderated?
I see so much exciting stuff here. Pretty weird because at this point in real life I don't really want to talk to anyone. I wanted to send a PM to Kiwi33 based on some of his interests listed in his profile. Last week I think I glommed onto something. If it works like that in that case, there has to be some applicable crossover to chronic illness. Being a relatively new observation (I'm in year 8 now.) to me makes me want to discuss it with others.
Strange, how my focus in life has been involuntarily shifted. I had no idea that all this stuff was and now is a part of me. It could become powerfully useful.
My other observation is that CRPS has isolated me in so many ways. I'm thrilled to be in the company of others despite the reasons that brought me here.
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