Pondering something that was said.

[saraiderin]

One of the nicest doctors I met at last years TNA National Conference was Dr. Brett Stacey. Dr. Stacey runs OHSU's pain management center. I ran into him last week and when he asked me how I was doing I told him I try to keep busy, but was going home early as the TN pain was out of control. He told me I was going a good thing as this would keep me from focusing on the pain and I would find I would not hurt as badly. I find this hard to do at times though. Recently, I was homebound for 3 weeks as the pain was so out of control. I realize for some this is not a long time but, for me it might as well have been a eternity. I am a very outgoing person, I would rather be outdoors or at the library, anything other than stuck in bed ready to rip the left side of my face off. My question is this. What do you all do when you have those days where you can not get out of the house? Sarah

[jaztsd]

Hi Sarah,

I understand. When I feel too bad to get out of bed, I go online. I have a laptop, and keep it on a little table right next to my bed. When even moving a little hurts, I have an online keyboard I use - I can go online and really move nothing but my hand a little.

I use Click-N-Type. It's a free download, and very customizable. I created a keyboard of my own, based on one of theirs, that I like alot, and I would be happy to send to anyone who wants it. I started with their micro keyboard, which has the basics, moved some keys around, and added other keys I use, like the F-keys and arrows and such.

Took a bit of practice to figure out how to make one that looks decent, but once you learn how, it's really cool. There's a separate program to download to customize/build your own, but it's also free. You can get it here: http://www.lakefolks.org/cnt/ It was written by a guy for a quadriplegic friend, who wanted to make one that was both useful and free.

I'm sure most of you understand the level of pain where you are afraid to move even enough to type. Click-N-Type is great. I've played around with lots of other online keyboards (my last few jobs, I worked with folks who needed one), and Click-N-Type has everything any of my folks ever needed, and it's easy to use, and did I mention, it's free? Lol.

I can usually find stuff to keep me amused online, and I have a number of online friends I talk to, who are patient when I type slower than normal. When even moving a little causes pain, there's not much to do, and I refuse to be a slave to a TV, so this is a great alternative.

Love,
Jan

[spoiledbeth]

I also spend a lot of time online, along with reading and watching tv. I also nap alot of times. If I'm feeling really adventurous, I stamp to make my own greeting cards and color them in or try and do some cross stitch. But these are just things that I really like to do. I play a lot of computer games to keep me busy on really, really bad days... which I've been having a lot of lately thanks to the weather changing.

Beth in MO *butterfly2

[RStapler]

As strange (and boastful) as this may sound, I've spent very few days at home because of TN. TN combined with the flu yes. I have also had a few days off to visit specialists because of it. I just can't stand sitting at home, and have to be on death's doorstep to keep me there. Part of my reason, though, is that it is a lot easier ignoring jolts from the blue with lots of other things to distract me from them. Even 20 years ago, when I was new to this, it never once occured to me that staying home to avoid all movement was preferable to working straight through it. I guess it may also depend on how enjoyable your job is, how important it is to your sense of worth, and/or the number of people who insist the place will come to a screeching halt without you. Okay, that last bit may be a tad boastful, but you know what I mean. I love the work I do and it has always been very important to me that I not loose this through too much time away. Great jobs don't grow on trees and, if I'm gone too long the bosses might just get the idea I'm ... dispensible! I'm also a little hyper, I suppose, and in need constant distraction and challenges.

- Bob S

[allih]

I read or watch TV, do puzzles, make jewelry. Anything distracting. Usually when I am having a bad TN spike, I'm also having issues with migraines and/ or Fibromyalgia. I rarely have one bother me alone, my medical issues like to work in pairs or groups. So when it is bad I just have to take it easy.

Alli

[JeanC]

I use Click-N-Type. It's a free download, and very customizable.
...
There's a separate program to download to customize/build your own, but it's also free. You can get it here: http://www.lakefolks.org/cnt/

Hey, Jan, that looks really great! You ought to post the website in the Useful Websites thread. There's also a Face Pain Tip Sheet at the TNA website and this would be a great addition to that. Check out the page and if you want, email the information to Alana Greca and Jane Boles at the TNA (addresses can be found on the website) - http://www.fpa-support.org/aboutfp/TipSheet.html

And this is a great thread, Sarah. One of the coping mechanisms the pain management folks push is distraction and a list like this (from people who've tried everything) is valuable. We should maybe post a link to this thread in the Useful Websites, too.

When I couldn't function because of face pain (which was 24/7 for several months) I mostly watched TV (though all my favorite shows were pretty depressing when I watched them in that state), read (but not very efficiently - just could not concentrate for more than a paragraph at a time and I think I got through maybe 3 books in 6 months), paced the floor, cried a lot, ... Then I tried to take the bull by the horns and find someone to figure out what was wrong and what to do about it and started researching, emailing friends, documenting my medical and dental histories to take when getting second opinions, etc.

Then I found this forum and it helped a lot. I spent a lot of time reading back through past posts, looking for help with my particular type of face pain (too much dental work) and posting my story - very therapeutic and got me through a lot of painful days and evenings.

There's also a chatroom. It's not as active as it used to be it but does get some activity most nights (usually around 9 pm eastern time) and it's a great way to take your mind off your pain - meeting and sharing with people from other BT forums. Here's the link and there's also a tutorial in the Chatroom Feedback forum -

BT Chatroom - FlashChat (http://brain.hastypastry.net/forums/chat/flashchat.php)

Chat Tutorial - Flashchat Tutorial (http://brain.hastypastry.net/forums/showthread.php?t=168)

I just stopped in and they're having some technical difficulties - people getting booted out a lot and I was getting a delay when trying to post. Hopefully that will get straightened out soon.

And there's a huge bank of information at the TNA website. Go to What's New? 2007 (http://www.fpa-support.org/learning/LatestandGreatest.html) under the Learning Center (http://www.fpa-support.org/learning/index.html) and you'll find hundreds of articles about TN and face pain - scientific to patient stories.

Best wishes to everyone for pain free days ahead.

Jean