Hi Melody - how did Alan sleep last night?

Diana

Computers are tricky and it's easy to offend or sound like you're saying something that's not quite the way it sounded in your head. Sometimes I feel people get indignant about something they're read, when the writer was clearly saying something else. SO....Lara, even though you copied what I wrote:
Okay, folk, if you don't have pn and have been posting here, I'm curious---what brought you to this thread? What's kept you here? Not that I am disinviting anyone AT ALL. I LOVE THIS THREAD. I love how many people are exploring and talking and joining the talk. It's fabulous. But I'm curious.

You answered:I also didn't realize one needed to have a condition in order to post on particular forums. It kind of implies that I was asking non-pners to go away, when I certainly was not.

Glenn--you know me, and I feel hurt that you'd imply I was asking people to leave: I was not aware anyone specifically NEEDS to have peripheral neuropathy to post on this board or in any particular thread in it you said.

I don't want to feel defensive that I'm a nice person, and I feel I have to here. So, everybody....I am a nice person.

Last, about profiles and such. I'm not demanding anybody do anything; I am suggesting that if your signature does not contain something which gives a clue about you, you could put something in your profile that does. I'ts NICE to be able to know a bit about who one is talking to, when one's memory is not all that fabulous.

Lara, you say: As for putting something in my profile listing conditions. I'm sorry, I have never done that anywhere on the internet and don't intend to start. and I feel like you're implying I was asking for you to post very personal info. I was not. Really. I am a nice person. Really.

I have a particular interest in PN; that's one of my conditions, and it's nice to know who else is here with PN. Or whose father or hubby or friend has it. Just to round out the picture. I put my major problems in my signature.

Anyway, I'm done defending myself. If my suggestion feels helpful to anyone else, great; if not, that's okay, too.

And yes, this thread got WAY off topic, but I found it became an item of amusement embedded in the pn community, and I have enjoyed reading about everyone's antics and perceptions of SL. Really, it feels rather like a travelogue, and it's got a lot of good humor to it. It's brought me lots of smiles and chuckles.

Okay, 'nuf on this. Again: not telling anybody to go away; not telling anybody they must give away precious personal info; not telling anybody anything. Just making suggestions and being curious. Wow.

I've had PN for 7 years OFFICALLY (will be 8 in Feb) but had it LONG before I was diagnosed. Back then I frequented the message boards at The Neuropathy Association. And then THEIR server went down for MONTHS. When the message boards finally came back online about a year later, it wasn't user friendly any longer. Still isn't and they no longer keep archives. The site itself was only down a few months but their boards were down MUCH longer...

And we paid money there to JOIN the association...

So BT isn't the first forum to have major issues...just the one most of you know about.

LisaJane, if you are so against BT, why bother posting there? Yes, you say it's to reconnect with old friends and help new ones but running down the place doesn't do that. Holding a grudge doesn't help anyone and will actually make your PN worse...and you are holding a WHOPPER of one against John Lester, who to be brutally honest, doesn't care...so move on and like others have said, get over it for your OWN health. Stress only makes PN worse. Liz

To: DLShaffer:

Alan took his requip 20 minutes before bedtime at around 11 p.m. I found him up at 1:30 on the comuter, wide awake. I gave him a xanax and he went out like a light.

He has to do what he has to do. He needs his sleep so he takes a xanax.
This friday is the visit to the neurosurgeon.

Then we at least will know what's up.
Will update.

melody

And don't worry, LJ--I actually think you may have interpreted what I said in the same way you were just mentioning--sometimes, in writing on these boards, the way a message reads, without the context of tone or body language, gives an impression different from what the writer actually intended.

I was trying to say (I think) that there's no rule against posts/threads way-off the topic of neuropathy on a neuropathy board--especially here at Neurotalk, where we're trying to have an atmosphere that is not as restrictive as the old one many people chafed under. I do find it easier, just in terms of making decisions about what to read/respond to, for such posts to be labelled as off-topic, or somehow distinguished from those that are neuropathy specific, but I'm quite happy to go through all the posts anyway without worrying if the topic may shift away from neuropathy. If being able to jump to any topic in any thread makes people more comfortable and more liable to post, I'm down with (or is it up for?) that. With my history (and many of you know it, chuckle) far be it from me to call for any sort of "posting rules".

I do think the thread has become about so many more issues, though, that it should be reprised in some other section, so more people who don't usually come here could see it and add their comments. I bet there are a lot of other people with takes on Second Life, or JL, that we don't usually run into here.

So I apologize, Liza Jane (who IS a nice person).

(I think I'm a nice person too, most of the time. What I can also be, as LJ, I think, can relate to, is damned persistent. Ah, what the heck--bulldog stubborn. It has served me well in doctor's offices--and, more often than not, on boards as well. But I imagine it's not always everyone's cup of tea.)

Want to know why?? yesterday I bought 3 lbs of ground up turkey. I planned to make turkey patties, and freeze them, which is what I do all the time.
So when Alan wants his turkey burger, with no salt tomato sauce and 3 splendas, he can have it when he wants.

Well, when I got home I found out that I had purchaed 3 lbs of frozen ground turkey. It was in the process of thawing out.

So what was I to do?? I thawed it over night, and this morning, made a 3 lb turkey meatloaf with chopped carrots, zucchinis celery and onions. with everything else you put into a meatloaf...

Alan had to mix the whole thing because my hands don't work sometimes as I have arthritis.

So there I was with this 4 lbs or so of a meatloaf ready to be cooked.

I cooked it, took it out. It was scrumptious. But what the heck are Alan and I going to do with this big fat meatloaf?

It would take us all week to eat it, I heard that if you freeze meatloaf, it doesnt' taste the same. So here I was in my kitchen with this big tremendous meatloaf.

So I cut it in half. Put it in a tinfoil thing. Covered it, went outside to my upstairs neighbors who are from lebanon and the nicest people. The guys' wife died of mad cow disease 4 years ago and he's alone most of the time.

I ring their bell and you should have seen the look on one of the daughter's faces when I said "you have to do me a favor, you have to take this meatloaf, I made 4 lbs of it and who on earth can eat this in my house, we are just two people". She burst out laughing and said "wow, sure, thanks".

so I fed all the people upstairs. Good feeling, believe me.

Melody

see, no more second life talk.
Now we're talking about meatloaf......

((((Melody))))
you sure are a nice person to do that!

'smatter of fact, all the folks here seem like REAL nice persons

I think you are all nice people & very often it is just the way things happen to be worded or the way the words are interpreted that seems to cause a bit of trouble sometimes.
but if we can all give each other the benefit of the doubt once in a while- life will be less stressful.

Hi, LizJane . I'm sorry I didn't include my med. stuff in a signature or in a profile. It's just been my preference not to do so; I don't want it staring me in the face after I've posted each time. Some days, I'd rather not be reminded; I've already a scooter, a wheelchair and cane staring me in the face every day.

I've Ankylosing Spondylitis (AS) on top of AS (Asperger's Syndrome). I do have PN, along with obturator neuropathy (which predominantly effects my left - groin, thigh and knee). In addition? Well, since we were asked to share:

I've lived with arthritis since I was a child but it wasn't formally dx'd until I was 22. My first "bout" with it was costochondritis during a college yoga class, of all places, and it felt like I was having a heart attack. I was excused from the class and all I got to sit around doing was watching the other students; it wasn't a fun way to get any grade .

I've been through a ton of x-rays, bone scans, MRIs, CTs, and a couple rounds with EMGs/NCVs, along with a host of ESIs and RFs for my spine.

I see a PCP, rheumatologist, neurosurgeon, neurologist, PM doc and cardiologist (for symptomatic MVP, PVCs, and SVT - I think that one is) and I take Toprol-XL 50 MGs a day to regulate the ticker a bit better.

I'm doing my best to assist my doctors in their withdrawal; I don't want to see them! but they got this thing about thinking I need to see them once in a while to monitor everything. Fine... but, I do believe, I won't need a costume for Halloween. I may glow in the dark thanks to the radiation . (I actually know that it's low-level yet ... the cumulative effect from years and years worth and so many tests... ?)

In addition, it was by a fluke (a mistake in tests - FSH and Estradiol levels - that led my doctors to believe I was post-menopausal) that my doctors sent me for a DEXA scan and discovered that I've got osteoporosis. Even being mistakenly informed that I was post-menopausal was far better than doctors scaring me for several months with the scare that they suspected I had cancer; test after test proved that wrong, but the fear was there and, whenever they mention something that brings it up, I don't hestitate to remind them about the emotional trauma they created with their "it might be cancer, no it isn't, it could be cancer, no it's not, it ...." They were just flatly wrong and had a difficult time accepting it.

In addition, I have another "O" word: Osteoarthritis and DJD (Degenerative Joint Disease).

There is something wrong with my peroneal nerves, only my neurologists are not sure what it is and said it could take about 10 years for them to know. Maybe that's like having arthritis as a child and the years' delay in its dx, too .

The current medications I take are: Toprol (as I mentioned, and which reminds me that I've another cardio appoint. in few days), Activella (to - it is hoped by my doctors - slow the progression of bone loss and to control bleeding; yes, I'm a bleeder and spent an un-gawly amt. of hours in ER for it).

I also take codeine and use Stadol on an as needed only basis. And, those medications were a total pain in the rump to get authorized for how my doctors wanted it Rx'd. Even with three doctors giving the go-ahead, my insurance had some putz-wit seeking to over-ride. What finally happened? It took a HR woman and the CEO which provides the bulk of my insurance to issue a directive to my insurance and get my medication filled as written, not as insurance wished. In that interim, though, I did it the insurance's way and spent a month throwing up - due to my body not getting along with Oxycontin.

Ohhh, a couple years ago, my doctors suspect I had a TIA.

How to summarize this for a profile? I dunno. Nor do I want to .

I hope that I may have addressed some of what you were wanting to know.

P.S.: I posted about my TN in the TN forum; I have arthritis in my jaw bone and TMJ, which my dentists knew before they decided it was okay to force my mouth to remain open for a dental procedure and blowing out the 5th cranial nerve. And, I posted about vagal nerve response in this thread:

http://neurotalk.psychcentral.com/showthread.php?t=1870

In extreme pain, my body responds by wanting to pass out. But that's only when it feels like someone is trying to tear my legs off my body.

jjjeeeeeeezzzzz. All this and Aspergers too???

boy, you have been through the mill, haven't you, you poor thing.

Well, it's very nice to meet you and hope you at least have one pain free day once in a while. I'd love to serve you a piece of my meatloaf.

Take care,
melody