Old 08-27-2011, 03:30 PM #3181 (permalink)
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Default Re: Come For Tea

I've had my nap...<smile> and report that the storm is here, still picking up intensity. Right now it's a tropical storm, with hurricane conditions during tonight. I have no idea what category it is--would be interested to know. Most likely Aly in NZ knows, LOL! Susan, I'm glad your father is with you, and you don't need to worry about him.

Sequoia, wishing you well as you go to Fresno for the trial!

Joni, Sweetie, I'm glad your trip is over! Hope the insurance issue is settled very soon. It rattles my cage that we have that as well as unscrupulous medical equipment folks to deal with during this illness.

Marta, I really liked my Pulmonologists. They were both sweethearts. I never felt like an interesting test case with them, but was shown lots of compassion. I expect you're going to be giving them a starting point which later function tests are compared with. For what it's worth, they become most of our "most helpful" doctors.

Aly, the ref who is so partial to his own child should be humiliated, and so should his wife; not you! Amazing... So, you have chocolate?

My love to all--and hope to see everyone, including Helen! tomorrow, without any electricity losses or trees downed, etc.
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Old 08-27-2011, 04:42 PM #3182 (permalink)
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Hi everyone. I just want to do a reality check. I met Nina's friend and mom in the mall. I figured I should say something because Nina does many things with her friend. I don't want the mom to think I'm dipping into a second glass of Merlot. Before I said anything she said me and some other Moms noticed you talk like you have something wrong. Did you have a stroke? I said no, I have a motor neuron disease that effects my speech.She said what is it? I figured what the heck, let me tell her. I said ALS. The next thing she says is, Isn't that terminal? I said only if I want it to be.
Now I need a reality check to make sure I'm not nuts. If someone told you they had ovarian or pancreatic cancer would you ask if it was terminal?
Then I had to go into an story that Nina doesn't know the extent and please don't tell her daughter.
This is why I'm not saying anything anymore. Let them think I'm a lush. I freaking give up.
Sorry, I know this isn't the place to vent but I'm so frustrated.
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Old 08-27-2011, 04:48 PM #3183 (permalink)
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I heard cat. 1 or 2 at this time. Hold on Ann! Yes, this will give us a reference point anyway. I'm feeling pretty good so far. At my ALS Group a coule meetings ago it was said that a PALS should have 3 doctors on her/his team. Your Primary Care physician, your Neurologist and your Pulmonologist. I didn't know that so got on it right away. He was reccomended by one of my PALS friends here in Colorado. I'll keep you posted.

Susan, she didn't handle that right at all! Some people are such boobs. I hear you girl. Sometimes I say ALS and sometimes I just say something vague like a Neurological Disorder or if they say "Back problems?" I say, "Yeah, it stinks". Usually when I say ALS they say "Oh, I'm so sorry." Mostly people are pretty great about it and know what ALS is. I'm a little picky about who I say that to though.

Love you all very much
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Old 08-27-2011, 04:48 PM #3184 (permalink)
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Next time tell her that Life is terminal.
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Old 08-27-2011, 05:07 PM #3185 (permalink)
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Susan- that sux, but I'd say give her a break. She may have absolutely NO clue what ALS is and that may be why she asked about its outcome. Not very suave, but it could have been worse. Hang in there hon. There really isnt much that isnt tough about all of this.
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Old 08-27-2011, 05:21 PM #3186 (permalink)
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I know, I'm really not usually overly sensitive. She was an Attorney so I figured she would be the one to have an appropriate response. She's very nice to Nina so I was very polite and cheery (outwardly)
Your right Marta, I just told Bill as of today I'm saying a Neuro disorder that's effecting my speech. I've said I was going to say before that but now I'm really sticking to it.
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Old 08-27-2011, 06:56 PM #3187 (permalink)
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Susan, I vote that you just pretend that you drank too much! And then get into your car with the kids and drive away...

Seriously, I usually tell people that I have a neurological disease that affects my legs and back and leave it at that... I can't stand the look that they get if they know what ALS is, and don't feel like educating them that it's NOT MS. I finally told my boys my diagnosis, and neither one seemed to be shocked/upset. I don't think they understand the extent of it and told them if they wanted to learn more on the internet to remember that there was a lot of false information out there, and come talk to me about anything. But I'm less scared of it now than when I was diagnosed on 4.29.10 (funny how you don't forget the day the earth stood still for you, not to mention it is one of my brother's birthday), because I'm still doing a lot... just not standing while doing it.

On that note, I have another EMG this Wednesday... But I want to know what the neuro is going to say after it, as most of my symptoms are all LMN, and have virtually NO UMN signs, other than a brisk knee reflex.

Looks like its gonna be Tropical Storm Irene by the time it gets through with NYC, but am sure we'll probably lose power, and most definitely will lose internet. I'll come back on tomorrow when/if I can, but don't worry, we're on top of a hill... and a little water is not unusual in the basement. Funny thing though, I was trying to get onto a website for a college in Rhode Island and their website is down...
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Old 08-27-2011, 07:44 PM #3188 (permalink)
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I would never ever ask someone if what they had was terminal...just saying, dumb ashes! You know when my first husband was so sick, some idiot ask me, well is he going to die or what? I was so shocked, I just looked at her and said..we hope not!. Still don't like her to this day! Yea I hold grudges against some dumb ashes..sorry. I was cleanning a house friday, the house next door had been vacant for over a year, nice couple just got married in april, second marriage for both. Both retired from military, bought the house lived in it two weeks, he fell over dead at the age of 46..was in great shape.Just goes to show we none of us know when our time is..that is why I guess each day should be precious.
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Old 08-27-2011, 09:38 PM #3189 (permalink)
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Thanks friends for the great advice.we never know when the good Lord will call us home. I think I was momentarily taken back by her bluntness
Haha Joni! Ashes I get it
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Old 08-27-2011, 10:01 PM #3190 (permalink)
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Im off flying to fresno for the Dex trial tomorrow. counting on your prayers.....Ive been asking around the forum about flying and having breathing problems, but I think I will be ok cause the cabin is pressurized and its only 2 hour flight. Just call me WW....worry wart! lol....
love you all!

Praying for all of you going thru the whirlwind storm.....stay safe please! Hope you do not loose power so we can hear from you!
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Old 08-28-2011, 12:51 AM #3191 (permalink)
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Dear sequoia, best wishes for your trip, I hope all goes well and you get on the study. You are such a blessing to this forum. A very special lady.

Helen, whoops brain blank. Had something profound to say and it's gone to the moderator in my head. Hopefully to be released soon! Oh here it comes. Best wishes for your torture test next week lol!

Anne hopefully you have not been blown to Oz. I can just see your house with a skinny pair of legs sticking out from under it.

I have spent a pleasant afternoon at a wedding expo with Anna. Only 3 months till the wedding, yikes, I am now panicking, it's sooo soon,

Susan, I met a lady that I knew from SAMs school, who lost her husband in Prague last year after a bee sting. One minute they were biking along enjoyingvthe family holiday with the 2 kids and 20 minutes later he had died. I had not seen her since it happened. I just said how sorry I was and gave her a hug. She said, you never know when it's your last day.......boy that is an understatement. Sometimes when someone tells you something devastating( like having ALS) you just say the most stupid things and kick yourself later. You lady friend probably is kicking herself right now.

Sleep well all, has anyone heard from SueG? Now that we have found Dianne, we need to find Sue.

Aly
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Old 08-28-2011, 09:31 AM #3192 (permalink)
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Susan, sigh...Boy, do I remember the phase of trying to tell those who asked. I suspect Aly is right about her now kicking herself. The ones I later regret telling were those I didn't really know--like the produce worker in the grocery store, who seemed so benign (Have a blessed day!), but later she mainly wanted to share all of her problems with me. I ended up looking for her and dunking to avoid her. "The Exhausters" who suck all of the limited strength from you. So, do give people a vague answer unless they're a real part of your or Nina's life.

Helen, praying for you. I wish you all the best at your appointment. And hope your boys figure this out as needed, and not before. Hope you do keep electricity--you're funny!

We lost power at 5 last night, had a romantic dinner for two (cooked on the camp stove via propane, left from the boat), and later used the generator for the fridges and lights. Since I couldn't have the AC turned on, I skipped the laptop due to the heat it puts out. Electricity was back around 9:30 am, even though the peninsula was said to be wiped out (including Delaware), until mid-week! Yea!
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Old 08-28-2011, 09:58 AM #3193 (permalink)
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I'm glad you're okay Ann. The news is full of terrible stories. Your candle light dinner sounds very nice! I hope we hear from Helen and the others in the Eastern Region soon!
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Old 08-28-2011, 10:17 AM #3194 (permalink)
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"Yesterday 01:07 PM - permalinkgidget1
Hi to all of my brothers friends just want to let you know that the sun has set on 8-24-11 for my brother. I know he would want for you all to know. So I am here to be his voice still. His condition had worsen after having rigors (seizure like episodes) his pain was intense and they up his meds he was in a sedated state for aprox a week or 2 before pass in his sleep he went peacefully sorry theres not alot that i can inform you on about whats to come but i was still learning myself i will keep in touch with this form and will continue to support this disease. Peace be with you all."

Just wanted you to know that Shon has passed. He was my first friend here and a sweet sweet man. Gidget has posted the message above on his profile page. This truly sucks.

I love you all very much.

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Old 08-28-2011, 11:47 AM #3195 (permalink)
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Thanks for letting us know about Shon. I PM'd Al and asked him to move the thread, so all can see it. HUGS to everyone! Lori
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