Okay, I offered to be a "host" in this group, whatever that means. It was mostly just

[tpsbmam]

testing it out to see what it's all about.

I guess I qualify as a "host" in this group. I was diagnosed with MS in 1986.....I think my early symptoms showed 2+ years before that. I was an incredibly healthy New Yorker -- I walked almost everywhere I went, lived in a 5th floor walkup and thought nothing of running up and down those steps a few times a day, had been a vegetarian for a long time, worked for a dance company (in administration) and took the dancers' strengthen & stretch class 2 or 3 times a week.....so I went into my GP and asked him why the hell I was so tired all the time. (Hell, look at my schedule -- I'm exhausted just thinking about it!) But I had previously had energy to burn after all of that....no longer. All of my tests came back perfect. My doc was good but old-fashioned. He told me humans were made to be carnivores and I should start eating meat!

Me: But you just told me all of my tests were perfect -- I'm not anemic, which would be the only justification for your argument (and all that would mean would be I needed to attend more to getting protein through soy, etc). So WTF?

He had no answer for me.

It was 2 years later that my left side went numb -- I thought I was having a stroke. I'd just moved to CT and gone back to school. I ended up going back to NYC. The same doc saw me then referred me to a neurologist, telling my mother but not me (which thoroughly pissed me off since I was an adult patient.....but they were old family friends) that it was likely either a brain tumor or MS. I got one of the first MRIs done at Columbia Pres! As a matter of fact, it broke the first time I was in it -- I was in it for almost 2 hours. They kept talking to me to soothe me. I finally told them to shut up -- I'd almost been asleep a few times and they woke me up! They finally gave up after almost 2 hours and I had to go back the next day after they'd repaired it.

So I've been dealing with the ramifications of MS for about 26 years and yeah, I'm old pro-ish at this crap!

[libodem]

1. Thanks for taking the job

Best of luck. MS sucks. I have a friend with it. I have chronic pain from a failed.back fusion. My neck is fused, too. I'm working towards getting disability.

[tpsbmam]

5. I have to admit that, if I had a choice, I'd choose my form of MS

over chronic pain. I'm lucky -- I have very little pain. When I do get pain, it's from spasms and I have very effective means of dealing with that pain -- I don't have to live with it. My heart goes out to you -- I suck at pain! I can do the physical and cognitive challenges I have. Pain, not so much.

[MedicalAdmin]

13. You are an excellent choice for host.

Thanks for taking on that burden.

[tpsbmam]

14. Awwww, thanks.

[ProfessorGAC]

15. You and I Are Quite Opposite

The pain is my main symptom, but i don't have much actual dysfunction. I've had it for 19 years and have missed about 10 days of work over it, the whole time.

I went blind in one eye, and that never came back, but i don't have balance or motor issues. I do notice a tiny delay in my right leg going forward when i walk, but it's probably no more than a millisecond. But, it barely affects my gait, and i don't have any issues with length of a walk.

I've traveled well over 100 times for work since i've had this and i don't have any problem walking through the airports, even the big ones. (I live near Chicago, so i've had to walk through O'Hare what seems like a million times.)

I don't have any cognitive symptoms either. I went back and got a third advanced degree while i had this and had no issues with memory or cognition.

So, the way it hit you and the way it hit me are really different.

Thanks for hosting this group.

[tpsbmam]

16. Such a diverse disease!

I have to admit to a touch of envy -- as much as I find pain so much more noxious than many of the things I've gone through, I can't even convey the degree to which it, well, pains me not to be able to continue working & being a vital part of society!

I, too, got my Ph.D. while I had MS. As a matter of fact, I got the first symptoms and the diagnosis shortly after returning to school! One of my early symptoms was fatigue -- that started noticeably a couple of years before the diagnosis. (The diagnosis came after I was up early studying and most of my left side went numb -- I thought I was having a stroke.) I went right back to school and, throughout full-time grad school, worked half time (well.....20-30 hours/week).

I LOVED my profession and I LOVED working! Unfortunately, the combo of overwhelming fatigue (even with the very awesome...for me....Nuvigil, I often crash a few hours after getting up.....it just doesn't happen daily with the Nuvigil) and multiple mild to moderate cognitive symptoms (memory, with prospective memory being the worst; disorganization; attention/concentration; slowed processing) made it impossible to keep working. And engaging in cognitively taxing tasks (e.g., reading!) is exhausting -- THAT sucks!

[Irishonly]

2. Thank you

MS sucks. I have had a major heart attack, diabetic, neuropathy and a bunch of other stuff.

[tpsbmam]

6. All of which sucks!

One of my close friends here has diabetes and I keep telling her I have it WAY easier -- she doesn't agree. I'd struggle with the constant glucose ups and downs she's been putting up with since she was 12 (type 1) and all of the ramifications of diabetes. She deals with it admirably! Mom got lots of relief for neuropathy caused by chemo from neurontin. Doc put me on it once for terrible tremors I was having -- it turned me into a zombie! No easy answers for pain, and it totally sucks.

[kdmorris]

3. I offered, too.

If you become the main host, consider me for a "helper"?

I've had Type 2 Diabetes and Hypothyroidism since 2000 and Ulcerative Colitis since 2004. Some days, it's just a pain and other days I swear I'm going to "get it under control". I feel sometimes like it has a mind of it's own... uncontrollable. It has been a hard process learning to let go and not freak about every blood sugar over 200, but just try again next time.

[tpsbmam]

7. It's my impression that these are short-term gigs

I'm totally comfortable with rotating it through everyone here who wants to do it -- there are few enough that each could take a shift. I also know there are "co-hosts" but I wonder if that's really needed in this small group. I'm cool with any of the above! It'd make total sense to rotate the hosting around this group.

Diabetes would definitely be a hard process to get used to. As I explained earlier, a close friend has type 1 diabetes and watching her go through the constant glucose ups and downs is awe-inspiring. She's considered a "fragile" diabetic, and medically I can see why. But damn, you'd never know it from the way she attacks life! She lets little stop her. She cleans for me once a week, since I can no longer do most of it myself. I've literally told her I'd fire her a couple of times when she clearly was in bad shape and wouldn't stop to do what she needs to do to take care of herself! When she's stubborn like that, I just ask if I have to fire her again to get her to stop! I've learned to keep a supply of OJ and candy for her -- I can tell when her glucose is crashing, sometimes before she does.

And she's been dealing with it since she was 12, so give yourself a break -- you're dealing with the pain of colitis & so many GI/systemic issues -- there are going to be ups and downs. And sometimes our bodies do have minds of their own -- I watch her and, even when she's done everything right, her body goes kaflooey. Mine does too. I think it's a matter of getting comfortable with unpredictability, not always an easy process!

[kdmorris]

9. For groups, it's a life-time gig unless you decide as a group to have the host retire.

Additionally, no, co-hosts are not absolutely needed. The one thing having co-hosts do is to allow the main host to go on vacation. Of course, with a small group, as you said, there is only a very slim chance that anything would happen while you are on vacation.

"I think it's a matter of getting comfortable with unpredictability, not always an easy process! " You are NOT kidding, especially not for a control freak like me. Learning that I can't actually plan everything was a huge blow for me. But... after all this time, I am getting used to it.

[tpsbmam]

10. You want to set up a co-host thing for now? I have no problem with

switching around and doing like 3 month stints and setting up the next person to host for 3 months, etc. This is a small enough group, I think it'd work fine unless someone goes crazy with power! Let me look tomorrow how to set up a co-host thing and we can start there. Off to bed when my dog comes in from his last pee (the other old girl is already curled up on my bed.....and has her pee pad in the bedroom).

Yeah, it DEFINITELY helps not being a control freak. I wasn't one to begin with, so I didn't have that to contend with. You're ahead of the game learning all of that, though -- life is fraught with all kinds of unpredictable twists & turns and the irrational belief that we can control everything around us if we just behave in certain ways definitely leads to major upset for soooooo many people! Being able to adapt to the knowledge that we aren't in control of everything is a huge step! Hope you're giving yourself the credit you deserve!

[kdmorris]

11. Yes, I think it does help if you don't start from being a control freak.

I read a book once that talked about people like me "always trying to do the right thing to avoid the negative notice of the Cosmic Scorekeeper". That really sounds a lot like what I used to be like. If I just behaved, or did the right things... yadda yadda yadda.

Then, I found out I had Diabetes and Hypothyroidism and it was kind of a blow.. like the "wait... I did everything right". Learning to let go (and I still don't think I've totally learned how) has been one of the hardest parts of me. Because, no matter how "good" I am in not eating "bad" things, sometimes, my blood sugar just ends up at 200. And investing too much energy into why is just tiring.

[kdmorris]

4. tpsbmam - to officially become the host

you need to post a request on this thread:

http://www.democraticunderground.com/1013434

and provide a link to Skinner back to this one. There's not a whole lot of consensus on this thread, but no one has said "hell no" either

[tpsbmam]

8. Did and done.

Like I said, my vote would be for this hosting thing to rotate among the small number of people in this group and anyone who wants to should take it on.

[housewolf]

12. I've no objection to your being the host of this group

Though I'm new here, so I'm not sure an objection from me would count for much! LOL

I do think it's a good idea to assign a co-host or two, just as back-up in case you take a vacation or something. I'm not expecting much (if any!) activity here that would need intervention from a host.

But we might want to have some posts with information that we want to pin to the top or pinned posts that need updating, and only a host can do that.

[PhoenixAbove]

17. Thanls for hosting

I'm another fellow MS sufferer. Used to be a dancer; was even an instructor at one time. Now I have balance and motor issues... not to mention I'm in chronic pain with over acting upper body nerves and severe muscle contractions. Needless to say, I don't dance anymore. There's a lot I don't do anymore. I hate this disease and I'm not one of those "accepting types." I resent it everyday.