Old 08-18-2011, 05:37 PM #3031 (permalink)
HelenL's Avatar
Very Helpful Member
 
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
HelenL HelenL is offline
Very Helpful Member
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
Default Re: Come For Tea

Dearest Aly, don't let all these worries and woes get you down. We count on you for both your wisdom/knowledge, as well as your great sense of humor and your travel stories. So have a good cry, and take that wonderful boy of yours out for an ice cream (hmm, it's winter there so maybe a hot chocolate instead).

We love you Aly and I'm grateful everyday that you started this particular thread about dog poop, knickers, and tea!
HelenL is offline  
Old 08-18-2011, 05:38 PM #3032 (permalink)
HelenL's Avatar
Very Helpful Member
 
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
HelenL HelenL is offline
Very Helpful Member
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
Default Re: Come For Tea

The news is on, and its all about Pres. Obama, who has just landed at Bourne Air Station here in Mass., heading over to Martha's Vineyard for a vacation. My Dad is buried in Bourne National Cemetary just around the corner from where Obama is right now. So Air Force 1 has landed, and he's going on "Marine 1" which is not a boat but a helicopter, accompanied by a gunship.

Too funny... glad I'm not on Martha's Vineyard this week (can't afford it anyway).
HelenL is offline  
Old 08-18-2011, 06:05 PM #3033 (permalink)
Alyoop's Avatar
Very Helpful Member
 
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,834
Alyoop is on a distinguished road
Alyoop Alyoop is offline
Very Helpful Member
Alyoop's Avatar
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,834
Alyoop is on a distinguished road
Default Re: Come For Tea

Huh, y'all made me bawl again. I am making bread. I beat the crap out of it. Slap slap . It did help me stop blubbering, till now.
I hate to admit it, but I am missing my Hubby. It's 3 more weeks before he comes home. Boo hoo. It was my charlottes 24 th birthday last Tuesday so she is coming home for the weekend and Anna is moving back home after being away for 8 weeks. I am taking everyone out for dinner tonight so that nice.

Sorry for being a depressing old fart. But you have helped immensely. I do not know what I would do without you all. You hold me up and make me a better person. Thanks
Alyoop is offline  
Old 08-18-2011, 07:18 PM #3034 (permalink)
HelenL's Avatar
Very Helpful Member
 
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
HelenL HelenL is offline
Very Helpful Member
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
Default Re: Come For Tea

Dinner out sounds like a great idea! We had pizza tonight though I have a small pork roast in the oven which is going to go bad soon... Guess I'll either stick it in the slow cooker or back into the freezer.

I think you're feeling the "empty nest" syndrome over there Aly... missing the chaos that the kids and your hubby bring to the house that makes it a home! I know I was feeling it this summer when my kids were all gone the first week of July, and then when my boys were off to Alaska. I didn't as much when my daughter was in Chicago in August (Youth Group Mission Trip) as I don't see as much of her to begin with; she's usually at work, off with a friend, or holed up in her incredibly disgustingly messy room. (Does anyone need a trash bag or 2 of teen clothing, I'm about ready to bring it to Goodwill!) I think back a few years and think how fast they've grown up, it seems like yesterday when my oldest was 6 or 7, now she's nearly 18. And more opinionated than I could ever imagine!

Hope you're feeling better soon, maybe you just need some sunshine, and you can blame it on seasonal mood disorder, which only therapy would be to come to someplace that's summer (like here!)

Love you!
HelenL is offline  
Old 08-18-2011, 07:54 PM #3035 (permalink)
Ms. Pie's Avatar
Very Helpful Member
 
Join Date: 2011
City: Colorado
State: CO
Country: US
Diagnosed: 10/2010
Interest: I have been diagnosed with ALS.
Posts: 1,800
Ms. Pie is on a distinguished road
Ms. Pie Ms. Pie is offline
Very Helpful Member
Ms. Pie's Avatar
Join Date: 2011
City: Colorado
State: CO
Country: US
Diagnosed: 10/2010
Interest: I have been diagnosed with ALS.
Posts: 1,800
Ms. Pie is on a distinguished road
Default Re: Come For Tea

The kitties and I are alone right now. Brad is at the gym working out. I sort of like being alone and quiet for a little bit. I don't think I'd like it for long though. We're just going to pick through the fridge tonight. Nothing big, just pick. I hope you all have a great evening or day or what have you!

Aly, you're the best. I'll bet your bread will be better for the beating you gave it.

Much love,

Marta
Ms. Pie is offline  
Old 08-18-2011, 09:46 PM #3036 (permalink)
LizT's Avatar
Very Helpful Member
 
Join Date: 2010
City: Beaver Dam
State: WI
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,532
LizT is on a distinguished road
LizT LizT is offline
Very Helpful Member
LizT's Avatar
Join Date: 2010
City: Beaver Dam
State: WI
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,532
LizT is on a distinguished road
Default Re: Come For Tea

made some amazing meat loaf with sauce tonight. mashed potatoes and corn with sauteed onions. yum.
gona be a long next few days. we are ripping up the carpeting in Rays room and replacing it with hardwood floors. As some of you may know, once a PALS is in the "late" stages of the disease, ones bedroom looks more like a hospital room with all the supplies and all. not to mention all the frickin furniture (doesnt help that Mom's a bit of a pack rat). So we've got lots of work ahead of us. I made extra meatloaf so i could feed the helpers. sure will be nice to see the finished product!

Now, Aly- I love you my dear friend. You and i connected immediately because I believe we have the same heart. It is WAY too big and we desperately hurt for others. So much so that its not really healthy for us. But what choice do we have? it cannot be turned off. So we suffer right along with the ones we care about. Its difficult to say the least. Its down right exhausting. But heres the thing- I'd have it no other way. There arent alot of people in the world like this anymore. Give yourself LOADS of credit because honey, you are one amazing woman for a million reasons. i wouldnt change a thing about you... well I just lied. I would. I would like for you to see yourself the way we here all do. There truly arent enough words. So, now you are probably crying again. Go ahead. But then stop, look in the mirror, and realize that there is a group of people in this world that could not live without you. I am one of them.
LizT is offline  
Old 08-18-2011, 10:42 PM #3037 (permalink)
Senior Member
 
Join Date: 2011
City: Palm Harbor
State: fl
Country: US
Diagnosed: 06/2011
Interest: I have been diagnosed with ALS.
Posts: 647
susanf is on a distinguished road
susanf susanf is offline
Senior Member
Join Date: 2011
City: Palm Harbor
State: fl
Country: US
Diagnosed: 06/2011
Interest: I have been diagnosed with ALS.
Posts: 647
susanf is on a distinguished road
Default Re: Come For Tea

Well said Liz! The world needs more caring hearts like you two
susanf is offline  
Old 08-18-2011, 10:42 PM #3038 (permalink)
Senior Member
 
Join Date: 2010
City: Valley
State: Al
Country: US
Diagnosed: 10/2010
Interest: I lost a loved one to ALS/MND.
Posts: 987
joni51 is on a distinguished road
joni51 joni51 is offline
Senior Member
Join Date: 2010
City: Valley
State: Al
Country: US
Diagnosed: 10/2010
Interest: I lost a loved one to ALS/MND.
Posts: 987
joni51 is on a distinguished road
Default Re: Come For Tea

We had to cancel Bruce's peg because of ins purposes..stupid ins was not going to pay after medicare, so I filled out an ins form yesterday for a supplement, they said I would here back from them before sept 1st. So we decided afew weeks should not make too much difference, especially if we are approved for this supplement. The other ins would not pay there part on the dynavox either, so that is on hold too. I am defianately learning more than I want to know about ins, medicare, keep yalls fingers crossed that we here something back next week. The policy said you could not be turned down for pre existing conditions. It is a supplement ins for medicare. Wish I had of known this before.
joni51 is offline  
Old 08-18-2011, 11:00 PM #3039 (permalink)
Alyoop's Avatar
Very Helpful Member
 
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,834
Alyoop is on a distinguished road
Alyoop Alyoop is offline
Very Helpful Member
Alyoop's Avatar
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,834
Alyoop is on a distinguished road
Default Re: Come For Tea

Yep, thanks Liz crying again.
Join, I am soooo glad we do not have your health system.
Just sent some MRI scans from my sick patient off to a Biogen big wig and see they are based in Mass, Cambridge. Is that near you Helen?
Hmmm I could vist Biogen and it would be tax deductible.

You are all right. I think I am very lonely and sick of all the pain around me, not for how I feel, but how everyone else is feeling It does hurt Liz and I feel guilty as well, guilty for NOT having ALS.Guilt is so stupid, but I feel it anyway.

I need hustle and bustle. I need a job that has longer hours maybe. But I just get too darn tired..... Winge .

Now I will smile and go get Sam from school. He lights me up
love and hugs
Alyoop is offline  
Old 08-18-2011, 11:04 PM #3040 (permalink)
LizT's Avatar
Very Helpful Member
 
Join Date: 2010
City: Beaver Dam
State: WI
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,532
LizT is on a distinguished road
LizT LizT is offline
Very Helpful Member
LizT's Avatar
Join Date: 2010
City: Beaver Dam
State: WI
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,532
LizT is on a distinguished road
Default Re: Come For Tea

Aly- I know what you mean. For the first few years after i started taking care of my PALS, I would literally feel guilty because I could breathe. I could eat. I could stand and walk. I could talk. It took me years to get over that. It also took me a couple years before I would eat in front of him. I still dont like to do that but hey, a girls gotta eat!
LizT is offline  
Old 08-19-2011, 10:21 AM #3041 (permalink)
Ms. Pie's Avatar
Very Helpful Member
 
Join Date: 2011
City: Colorado
State: CO
Country: US
Diagnosed: 10/2010
Interest: I have been diagnosed with ALS.
Posts: 1,800
Ms. Pie is on a distinguished road
Ms. Pie Ms. Pie is offline
Very Helpful Member
Ms. Pie's Avatar
Join Date: 2011
City: Colorado
State: CO
Country: US
Diagnosed: 10/2010
Interest: I have been diagnosed with ALS.
Posts: 1,800
Ms. Pie is on a distinguished road
Default Re: Come For Tea

Liz my Dear, I read and feel your sweet heart and words and then get all soft and warm and loving and then.....I read...

"Never trust a fart..."



Love you!
Ms. Pie is offline  
Old 08-19-2011, 11:19 AM #3042 (permalink)
HelenL's Avatar
Very Helpful Member
 
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
HelenL HelenL is offline
Very Helpful Member
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
Default Re: Come For Tea

Liz, you're wonderful... and yes, a girl does need to eat, and I bet your PALS would rather see you with him eating, than by himself while you sneak something in the other room. Guilt goes both ways, I feel guilty because I can't do what I used to do, yet it doesn't really appear anything is wrong with me when I'm sitting down. So I just look like a lazy Mom. Course I get up and keel over (twice this week) when I do stuff anyway.

Marta, you said it so well about Liz... never trust a fart!

Aly, Cambridge is next to Boston... a little more than 20 miles from me! So come on, and enjoy the last few days of summer in New England! And I bet that bread came out great! Beat the bread and hug the kid, makes you feel better.

Joni, that really sucks about the insurance giving you a hard time... I was driving my friend into Boston to get a Botox shot for her throat so she can speak (she has Spasmodic Dysphonia) and was on her cell phone literally whispering over the phone to her insurance company. Now, they've paid for this procedure 24 times now, what was the issue this time? Not like she's getting it to inject into her forehead, this is so she can speak! Funny thing is, I tease her and say we make a good pair, she can't talk, and I can't walk!

We're getting ready to go down to the Cape (Cape Cod) for a couple of days, my brother and SIL live there and another brother and his family will be there tomorrow as well. Only problem is my daughter wants to come back Sat nite to go sing in her karaoke contest, and I don't want to drive back then, and don't really like the idea of her driving back alone. She'll have to go with her Dad either way, as I'd be too tired to go even if I drive back. Looking forward to getting away, but do prefer my own bed.

Have a great day everyone! Love to all...
HelenL is offline  
Old 08-19-2011, 11:40 AM #3043 (permalink)
CoachMeg's Avatar
Member
 
Join Date: 2011
City: Roseville
State: CA
Country: US
Diagnosed: 02/2011
Interest: I am a family member of someone with ALS/MND.
Posts: 210
CoachMeg is on a distinguished road
CoachMeg CoachMeg is offline
Member
CoachMeg's Avatar
Join Date: 2011
City: Roseville
State: CA
Country: US
Diagnosed: 02/2011
Interest: I am a family member of someone with ALS/MND.
Posts: 210
CoachMeg is on a distinguished road
Default Re: Come For Tea

Happy Friday friends! Well, at least those of you on this side of the world.

Just to reiterate what everyone else has sad in one form or another...this group rocks! If it weren't for everything that was said and felt and expressed here I would be a ball of slobber and tears. Y'all make it easier to manage and accept what we are going through.

It is so important to remember that even though we haven't met face to face, there are people in the world who care about us and support us.

Have you hugged your PALS/CALS today?!?!?
Love and light
Meg
CoachMeg is offline  
Old 08-19-2011, 11:59 AM #3044 (permalink)
Ms. Pie's Avatar
Very Helpful Member
 
Join Date: 2011
City: Colorado
State: CO
Country: US
Diagnosed: 10/2010
Interest: I have been diagnosed with ALS.
Posts: 1,800
Ms. Pie is on a distinguished road
Ms. Pie Ms. Pie is offline
Very Helpful Member
Ms. Pie's Avatar
Join Date: 2011
City: Colorado
State: CO
Country: US
Diagnosed: 10/2010
Interest: I have been diagnosed with ALS.
Posts: 1,800
Ms. Pie is on a distinguished road
Default Re: Come For Tea

Amen Meg Dear. I'd be out of my head (worse than I am) if it weren't for you ladies and gents. All of us are in this together.

Much love and affection
Ms. Pie is offline  
Old 08-19-2011, 12:00 PM #3045 (permalink)
Ms. Pie's Avatar
Very Helpful Member
 
Join Date: 2011
City: Colorado
State: CO
Country: US
Diagnosed: 10/2010
Interest: I have been diagnosed with ALS.
Posts: 1,800
Ms. Pie is on a distinguished road
Ms. Pie Ms. Pie is offline
Very Helpful Member
Ms. Pie's Avatar
Join Date: 2011
City: Colorado
State: CO
Country: US
Diagnosed: 10/2010
Interest: I have been diagnosed with ALS.
Posts: 1,800
Ms. Pie is on a distinguished road
Default Re: Come For Tea

P.S. Yes I did and will Meg!
Ms. Pie is offline  
Closed Thread

Tags
back, work


Currently Active Users Viewing This Thread: 2 (0 members and 2 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


All times are GMT -5. The time now is 08:44 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016