Fading away

Some of you have noticed that I'm not around much recently. Thank you for looking for me and wondering how I'm doing. I appreciate the concern.

I've posted about how I'm loosing the use of my hands so that's probably not a surprise to anyone. (70% of hand strength so far, and a hell of a lot of constant pain.) I lurk now more than post. Instead of posting 50+ times per day, I'm now sometimes going days at a time without posting at all. I'm minimizing the amount of typing I have to do. If I post less and less often, and it seems like I'm not around a lot, this will be why. It will be because the meds still have not been helping.

I feel like I'm fading into the background. I'm really not trying to ignore anyone. A lot of you are great people I would love to still be talking to every day.

If you do see me around, please say hi and tell me what's up. That will mean that the pain has abated for a bit and I've got the time to indulge in some typing. :)

:hi:

:hug:

RL

:hi:

:hug:

:cry:

:hug:

That has been one of my reactions too. :(

At each new stage of disability I feel like I go through the steps of grieving all over again. I think I'm at the acceptance stage again.

DU helps. I like having people I can still socialize with. You're one of those people. So as much as possible I'm trying to stick around. :hug:

:hug:

:loveya:

I am so sorry.

You're one of the people here who I know understands. :hug:

I'm glad you're here. How are you doing?

I participated in the American Cancer Society's Relay for Life event in my community. Although I am physically tired, I am emotionally and spiritually inspired.

We cancer survivors were treated like rock stars! We got gift bags, free food, massages, and other spa services. It was really cool. But most importantly, we raised a lot of money for cancer research.

:woohoo:

:loveya:

I'm glad it was such as awesome time. :)
Do you have any photos you can post? I'm sure I'm not the only person who would love to see them.

bad KW!

The survivors lap was empowering!

:hug: :hug: :cry: :hug: :hug:

:loveya:

dg

Thank you very much. :loveya:

I don't know that you'll see me at any more marches (unless I get put into a wheelchair and can ride my way through it). But I hope I'll see you at a DU meetup again sometime.
:hug:

I'll be there to push you. Even uphill. 'k? :loveya:

dg

Whatever it is, sorry to hear it.

my Rheumatologist is not sure if it's Psoriatic or Rheuatoid arthritis. My diagnosis has changed, but she's still not convinced shat she's got it pinned down. My pain manangement doctor is convinced that there is something else entirely going on other than arthritis because of degree of the loss of strength. Everyone keeps pointing to something Neurological because of the combination of pain and weakness, but even the top specialists say that I test clean neurologically. So I'm a medical puzzle that a bunch of doctors are still trying to figure out.

I never wanted to be a puzzle. :(

**pagerhugs**

:hug:

I'm still holding out hope for improvements. I'm long past thinking of doctors as magical miracle workers, but if there's anything they can do I think they'll eventually find it. :)

sorry you are in pain.

glad to know that you are still hanging out with us:hug:

:loveya:

I'm still here, though sometimes just quietly. :hug:

:cry:

I'm changing my entire life around to cope with this, but so far I'm coping pretty well. We'll see how it goes. :hug:

..sorry...I was just so shocked.

:hug: :hug: :hug:

:)

:hug:

I do notice when you're not posting but I'll now assume you're lurking at those times.
I hope that a better combo of meds is out there for you.:loveya:

In the meantime, I'll just read the good stuff that other people post. You often say what I'm thinking. :hug:

Oh, sweetie......of all the people to have this happen to....

It should not be happening to you!

I'm so sorry.......

I'm so happy we were able to get together in NY... :hug:

Better that it happens to me than that someone otherwise healthy gets hit with this. I already know how to adapt, accomodate and deal. :shrug:

I'm glad we met too. I wish it was a longer meetup. :hug:

Do you think you could make it to the Brooklyn Meet-Up if I swing through Staten Island to give you a ride both ways?

:hug:

Traveling is getting very difficult, but if you're offering a ride I'd definitely be able to go. :)

Please send me a PM with your address & phone number.

:hi:

I'll keep an eye out for you too, even if you don't see me as often. :hug:

I wish I could remove your pain....

Know that we here in the lounge miss you
:hug:

My own and the pain of a number of other people too. There are a lot of us here, it seems, who know what chronic pain is like.

Lacking that talent, I'll just keep pushing myself. You'll still see me on my good days.
:hug:

That blows. :(

I'm always gonna have a special thought about you, y'know. :D

:pals:

It might feel good. I bites. :P

You've been one of the people I look for when I'm here. That won't change. :)
:hug:

Okay, now I'm sincerely touched. :hug:

I've been here less frequently and had no idea about your hands but I had noticed that you weren't around. I had hoped that something wonderful was keeping you away. :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: Goddamn it, I'm so sorry.

I suppose some people would consider that a wonderful thing. :P

:hug:
I'm planning on being here as much as I can. It will be less often, but I don't have any plans to leave as long as I can still post.

I admire your strength.

Sorry to hear about your troubles. I had noticed you weren't around and was a little worried the lioness was back up to her poisoning ways...

I come and go all the time too; lurking can be fun.

Hope your meds start to work.:hug:

since that incident. If the Brooklyn meetup happens it will be good to see people again. I'm becoming even more of a homebody. :(

If they find a combination of meds that work I'll go back to being a social butterfly. :silly:

:hug:

please? :cry:

:(

But I've been dealing with constant pain for 15 years and I keep pushing ahead. I'm going to keep pushing as much as I can. :)

I'm hoping we'll have many more evenings of hanging out. I just might be doing it from a wheelchair soon, that's all.

What's up is that I just got home from work and I'm hoping there's a long enough break in the thunderstorms to walk the dogs

Exciting huh?

I also spent the weekend loading crap onto my photobucket account. Here's an example

:9

That's not crap. It's actually quite nice.

Let that be the lesson of the day :)

Sorry you are having difficulty.

It is good to see you.


:hug:

:hug:

It's good to still be here. :)

I'm sorry you are going through this. I hope you (they) find some meds that will finally help. That sucks!

I miss you.

:hug:

:hug:

I like seeing the pictures you've posted recently. It's nice to see you opening up, compared to when you first started posting. :hug:

:hi: :hug:

I hope I'll see you at this Brooklyn meetup. The other boroughs need to chash that party and represent! :P

:hug:

:P

Have you checked into voice-activated software? It's much better than it was when it first came out about 17 years ago. I don't know what it costs, but I do know one brand is called Dragon Speak.

:hi:

Right now I'm still installing safety bars and getting stuff to help me hold and open stuff. Voice software is definitely coming soon. :)

Thank you for the recommendation. I have been wondering where to start looking. I'll check that one out first. :hug:

A former co-worker of mine got Dragon Speak. We have to do lots of reports, letters, etc., and his hands were starting to bother him a lot. He got Dragon Speak, and just loves it.

Glad to hear, too, that you are doing other things to help yourself out. :hug:

That would be most frustrating. I hope you are able to manage your pain effectively. Take care. :hug:

Today's a relatively good day (which is why I'm posting today) but everything changs every day. It's hard to keep up with. But with moral support from good people I'm managing pretty well.
:hug:

to hear about the pain, but glad you're posting whenever you can! We love to see you, whenever you're here. :hi:

I often wonder, when I'm posting, if I'm too high on meds to be coherent. I'm always happy when people respond and it appears I made sense. :P

:hi:

Sending you all the best thoughts...I'm truly sorry to hear of your situation.

:hi:

:pals:

:( I'm sorry. You'll be missed around here. :hug:

So I want to see more mushy posts about how well things are going with you and Lelapin. You're both young and deserve to have a wonderful relationship. :hug:

http://www.nuance.com/naturallyspeaking/

Here is the PC Magazine review:

Speech recognition has never been this good. Dragon Naturally Speaking 8 Professional, the latest incarnation of the popular speech-recognition engine from ScanSoft, is better at turning speech into text than any other commercial product on the market we've seen. And though it still makes its fair share of mistakes, correcting those mistakes is remarkably easy. If you've been disappointed with speech-recognition tools in the past, Dragon 8 could turn you into a believer.

We tested the rather pricey Professional edition ($795 direct), but the same engine underpins more consumer-friendly Standard ($99) and Preferred ($199) versions (see www.scansoft.com/naturallyspeaking for a rundown of the differences). During ad hoc testing at PC Magazine Labs, after roughly 20 minutes of training, Dragon was about 95 percent accurate, and this improved after more training and more practice. By comparison, IBM ViaVoice 10, the one-time Dragon archrival (now also sold and marketed by ScanSoft), was only about 70 percent accurate. Granted, Dragon can still be frustrating—especially in the beginning, when you're still getting used to it—but thanks to a slick tutorial wizard and a clever interface, it's far less painful than you might expect.

Training the app is easy—even fun. After about 5 minutes of reading something as enjoyable as Lewis Carroll's Alice's Adventures in Wonderland, the app will have a pretty good idea of your speech patterns; if you like, you can ask it to analyze your e-mail messages and Word documents, so it can get a good idea of your writing style as well. This typically takes somewhere between 5 minutes and half an hour.

After that, you'll need another 15 to 20 minutes to run the tutorial wizard, which explains each of the app's primary features and lets you practice along the way. You will find that practicing tasks with the wizard is a bit easier than using the product on your own, but don't let that bother you. After just a few more minutes of dictation, you should have things down.

More:
http://www.pcmag.com/article2/0,1759,1818453,00.asp

If I can get them to provide it here (where I spend most of my time on the computer) then I'll have a good chance to really learn how to use it and get good at using it.

Then I'll see about buying it for home. Though, all things considered, there are a lot of other more necessary adaptive expenses that have to come first. :(

:hi:

I'm sorry that your body isn't cooperating with you. It can feel like a real betrayal.

I hope that you find something that works for you to keep the pain managed.

Love and healing thoughts coming your way.

:hug:

:hi:

Yes, it does feel like a betrayal. I still have hope though. Some of my doctors are really fantastic. I'm very lucky to have access to some of these people.

:hug:

You are a beloved person here, so please check in on us when you can. :hug:

You're beloved too. I haven't seen a lot of your posts recently, but you're a person I always enjoy seeing. :hug:

I'll definitely be here when I can. :)

Other people in the thread have already made good suggestions, I see, so I'll send my best wishes and tell you I'm thinking of you. :hug:

:hug:

I hate to hear you are having more problems & in so much pain.

You're one of my favorite posters & I hate to see you fade away. :(


:hug:

and I'm still hanging on.

My boss just agreed to provide voice recognition software for me here at work. If that works out well for me that will definitely help. :)

Thom

And hello! :hi:

Writer.

If I somehow get lucky and get the best, I promise to share. :)

:hug:

Thank you. :hug:

Hope you can find a pain management specialist who can rejuvenate you. Maybe watching your avatar affected your neck muscles????

Just wanted you to smile.

I have an amazing pain mananagement specialist who acts as a reality check for all the other specialists. He's the one trying to puzzle this out and also find some pain drugs that work on the different types of pain that I have.

You did make me smile. I love that avatar. It's so like me. :)

What a bummer. Hope your MDs are able to pinpoint the cause of all of

your pain and zero in better treatment soon. Meanwhile, hang in there.

Thank you. I'm definitely hanging in there, and finding out how much everything has to change to enable me to hang in there. It's turning into quite an education.

I was wondering how you're doing. hugs to you.

:hi:

Thank you. :hug:

I hope, with all the rounds of meds they're trying, I'll have some good news soon. If so, I'll definitely share. I'd love to have good news to post. :)

;(


I'll be around and I won't forget to say 'hi' to you.

:hug:

Moral support has been a huge help. :hug:

My friend was just over looking up information on some type of block for spinal pain. It seems to help her (bad car wreck). I wish there was something out there like that for you.

:hug:

Hands are more difficult than feet in that regard, because the block would have to be in the neck. I'm just hoping there are meds out there that work for this type of pain. Narcotic painkillers don't help.

I'm hoping to have some type of progress, just because I'm too stuborn to think there won't be any progress. Hopefully I'll have something more positive to post in a few weeks. If we find a way to stabilize what's happening, I'm throwing a party. :)

:hug:

If we could take the pain away for just a few minutes, you know we would.

I hope you can find some meds that work, so you can be here more often. :hug:

You're awesome, and I miss you too. :hug:

I'll post when I can, and I'll be back more if we can get this stabilized. That's a promise.

:hug:

:hug:

Hang in there. :hug:

I will do everything I can. :hug:

You know, of course, that you'll always be welcome among us, and if you ever want to know what's going on, there'll be dozens of people climbing over each other to be the first. :)

...I enjoy reading your posts.

Not much happening here, lil Bjornsdotter graduated from high school and we are just settling into the summer routine.

:hug: hope the meds start to work for you.

That's cool. It's a big transition period, and kind of exciting. I hope there are good things happening (good college, good relationship, good job, etc.) happening for your lil one. :)

:hug:
If these current meds don't do anything, there are at least two other rounds of meds my pain management doctor has lined up to try. Something will work.

such things as losing grip strength etc.

I don't know what causes it but I know that I have some neuropathy and pain in my hands, along with arthritis and there are times it hurts to type.

I hope that you hang in there Thom, and lurk a bit!

Post when you can.

:hug:

People with diabetes get neuropathy, but if you don't have diabetes everyone seems to be at a loss for what it could be other than arthritis.

I hope your pain is infrequent, transient and managable. :hug:

one time i couldn't move my fingers in my left hand for about an hour and they do get painful in the knuckles with regularity, but mostly nothing that can't be handled.

Here's hoping that something can be done for you!

:hug:

Dragonspeak - or some of the other talk to type programs??

I'm sorry you're having problems and are in pain.

We really miss you around here, ThomCat - try to keep us posted on how you're doing, 'k?

We'll all be sending you the really good Lounge vibes so you *should* start to feel better. ;)

I'll be trying it shortly. If it works well you'll definitely hear more from me. :)

:hi:

Most people are pretty happy with it - it just takes some "training" to get it to understand you. It can be a wee bit frustrating at first - but just hang in there.

We definitely want to be hearing more from you!!!

:hug:

I hope the good days far outnumber the bad ones and you will soon find a treatment regimen that provides genuine relief.

No need to reply... just a :hug: and :hi:

with only a little pain, so I'm indulging myself and posting quite a bit. So of course I'm going to reply. I want to return that :hug:

:)

:hug:

:hi:

:hug:
Right back at you. :hi:

...I've wondered where you were. I hope you have many good days, because you're sorely missed when you're not here! :hug::pals:

Thank you very much. It's nice to know that people think of me. The lounge vibes and friendships mean a lot. :)

I hope there are good days coming too. I will definitely share them when they happen. :hug:

...I'll always say Hi. you can count on that! :hug:

A whole lot...:hug: :hug: :hug: :hug: :hug: :hug:

You're awesome. :hug:

:hi: :hug:

:hug:

I hope that you find relief from your suffering. So many mysteries in this fucking world.
Tonight I went to visit a friend with MS. She fell a couple weeks ago, and is not very good at all. I hate it. I hate that your going through this, too.
Hang tough.
:hug:

I'm hanging as tough as I can.

I'm glad you're sticking with your friend. A lot of people just disappear when someone's health gets inconvenient. You're a good person. :hug:

of course I miss you - and am always very glad to see/read you. I had no idea about your physical problems ... sending you tons of vibes per healing. From here forward, I will read "seeing you" with new eyes - not just a personal appreciation that I get to see/read you - but with the recognition that if you are posting that your pain has, at that time, abated. Please know how appreciated your presence is by this DUer! :loveya:

Thank you very much. :hug:

Now I have some good warm fuzzies right before bed. :loveya:

:cry::hug:
I know we're a bit far, but if there is something we can do to help, don't hesitate to ask!

Have I mentioned that? :hug:

Good thoughts and vibes are always welcome. That helps a lot. And, I hope I get to see you and Lynz at a meetup or something. You're not that terribly far away. :)

but I know you...

So I want to offer my support and

:grouphug: :hi:

please remember

Bright stars do not fade.... they shine forever


lost

:hug:

Actually, I've noticed you a bunch of times. I just haven't posted enough to talk to you yet. :hi:

you are one of my favorite people here at DU. Please take care of yourself, and I hope you have more good days than bad.

:hug:

I now have a new roommate who will be doing all the housework in exchange for free rent, and I'm adapting everything in sight with handles, levers, and grips. My doctors are excellent. If all goes well I hope to have some more good days.
:hug:

...I hope your doctors get it figured out.

And hey, lurking is fine, I do it all the time...;-)

I hope the doctors can determine what it is you have, and start a course of treatment. And, of course, that treatment will be successful.


Take care of yourself, and do what you need to do. You are one of the great posters here on DU.:hug:

Keep up the good fight. :toast:

I'm sorry you're going through this. :hug: