I went today. 2 others besides me showed up. I was kinda happy I went because the speaker is married to the new neuro guy in a town close to me. I am happy to know I dont have to deal with the old dismissive dude anymore.

I went early so I could chat with her. She saw me come in and said "oh thank God! I was so afraid i was going to be sitting here all alone...again!" I told her that I showed early to have a chance to express myself to her. I went on to explain that.

1. I am NOT the facilitator nor do I want to be one. I dont want nor need the responsibilities of running a group. I dont wish to co-chair a group either. She responded that she didnt ask anyone to co chair. I told her it appears other wise. To put the level of guilt on the backs of a couple that do attend, with comments like "if you dont come the group will just have to fold" isnt fair. I too have MS and I too dont feel well, and I too have a real life that doesnt revolve around meetings, or activities planned or unplanned by anyone including my family. You CANT count on me to show up, so...please dont! I got a lecture on how strong we are as a team. I repeated myself that I am giving her notice. I will come and go as I please, when it suits ME, and not because it makes anyone else but ME happy. I am sorry if that hurts her feelings, but there it is.

2. some speakers are great, and some are horrible, and some have no business in an MS group, but since I dont pick um, I can only vote by showing up or not showing up. If folks are telling you to stop bringing them the quack snake oils cures, then why would you keep booking them? and then keep being mad at folks for not coming? if the speaker is fabulous and I am feeling great, I will be here. if not, please dont take it personally. I have MS! I dont make many important meetings in my life, let alone lectures.

3. please stop trying to force others to carry your workload. If you took this job on, then YOU took it on. If you refuse a co chair, then you get to handle ALL of it alone. I will no longer feel any responsibilty to fill out replies, play 20 questions about needs, or MS or whatever, only to find that you are throwing the info away, and following your own drummer.

last but not least 4 is that I HATE the fact that my inbox is now full of AVON come ons. Every 3 days I get an avon flyer reminding me how my MS leader is an AVON rep and how I can be one too! it offers me nothing special to order using your name, and I think its just sad that you pilfered names off an MS list to get customers! good gravy! as I finished saying that another woman with MS was walking in and she said "AMEN!" please stop sending me this crap. I dont want to buy make up, and if I did it wouldnt be avon.

The host seemed quite hurt. it stung, and I was thinking that perhaps I should have waited till after the meeting, but worried that I would be too tired or too distracted. So...there ya have it.

Thanks for all the support. :grouphug:

I am sure that wasn't easy for you and probably very exhausting...but, I hope you feel a weight lifted from your shoulders. I feel like you must! :hug: Good job!

So, how was the speaker?:hug:

Dej, I'm late reading this and it's all come and gone before I butt in.

But it all sounds very stressful. Had it been me, I'm afraid I would have bought a nice big bar of chocolate, rented a good film and sat at home.

If I need a support group, I just log on here. I know I can flit in and out of here, pick what I read about and know that if I need help, someone will try to pitch in.

Leave the Avon lady to her thing. Walk away... :)

I can come to NT in my underwear - priceless.

The speaker was wonderful. Her hubby is the new neuro in the big city up from me, and he is sorely needed. The old guy is grouchy, and dismissive to MS patients.

The topic was bladder, bowel, and sexual dysfunction related to MS. One woman had her whole large intestine removed due to Chrons disease years ago, and its a mess. The other has such a slow paced intestine she can actually got 12 to 15 days without pooping. Said "I get busy and dont notice till I start vomiting, and then I know there is a problem" WHAT?! How do you not poop for 2 weeks and not know you dont have a problem? anyway, we spoke of how the intestine has an intelligence all its own. its nerves and signals work independantly of the brain and body until it comes time to open the exit door. if the exit door signal cant get thru to the brain, then the door can either stay stuck open or shut. She talked about pelvic floor exercises are useful to keep the floor strong, but if the signal cant get thru, it doesnt matter how strong the floor is.

She spoke of how many woman get a UTI after intercouse because the urethra isnt as tight and closed off as it used to be, and bacteria can wash upwards into the bladder. Since MS patients tend to not flow as strongly as non MS patients we dont get to flush all the bad stuff away after. We have to become extremely well hydrated in order to keep the fluids moving.

She touched on urinary retention. How the gate simply cant get the signal to the brain to empty. The gate stays closed, and urine can remain trapped in our bladders which causes them to over stretch and ruins the signal process even more. The woman who runs the group retains about 300cc of urine before she becomes painful. We spoke of self cath options and ways to do it.

So, the speaker was well prepared. she was good with her message and had everything timed wonderfully so that at 12 on the dot, she was ready to leave. After all was said and done, the woman who runs the group was gathering up all of her avon books, avon flyers and some MS pamphlets and had quite a load. I said "do you need help?" and she said "yes, if you could grab this stuff for me" and pointed to a large pile of Avon stuff that had been unseen till then. I said "hang on a sec." and I went to the front desk of the library. I asked if they had anyone that could "help that woman with MS" up on the 2nd floor. She called to Randy a big strong teenager and asked him to go up to the 2nd floor to help carry stuff. I got in my car and left. I am NOT good at carrying things. most stuff ends up on the floor and me with it.

So, there ya go. :cool:

Deij - way to go. I know I was stubborn but finally admitted to myself and the world, I'm really not good att carrying. I think I'm fooling the world and me that I REALLY can do it. Not.

I had the UTI from hell, it would not go away, saw a great Urologist. He got rid of my UTI, put me an 1x day Nitromono/flurn, (an antibiotic a)nd I have not had an UTI in almost a year. My PCP tells me 2x a day for 2 days following sex - which honestly doesn't occur that often now because of mobility and pain problems. DH has been great about it.

OR, without..:eek::D

:Thats-Funneh:
:holysheep: :Funny-Post:

I agree with this whole-heartedly...ESPECIALLY today of all days! :grouphug::grouphug::grouphug: