Old 04-05-2011, 10:27 AM #871 (permalink)
Member
 
Join Date: 2010
City: somewhere
State: in the
Country: US
Diagnosed: 06/2011
Interest: Making the most out of life
Posts: 323
momofsixkids60 is on a distinguished road
momofsixkids60 momofsixkids60 is offline
Member
Join Date: 2010
City: somewhere
State: in the
Country: US
Diagnosed: 06/2011
Interest: Making the most out of life
Posts: 323
momofsixkids60 is on a distinguished road
Default Re: Come For Tea

Happy, Happy Birthday Peter! I hope you have a wonderful day today or am I too late (your time)?
momofsixkids60 is offline  
Old 04-05-2011, 11:07 AM #872 (permalink)
Ladyinn's Avatar
Member
 
Join Date: 2010
City: Custer
State: South Dakota
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with ALS.
Posts: 402
Ladyinn is on a distinguished road
Ladyinn Ladyinn is offline
Member
Ladyinn's Avatar
Join Date: 2010
City: Custer
State: South Dakota
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with ALS.
Posts: 402
Ladyinn is on a distinguished road
Default Re: Come For Tea

I need a cup of tea this morning, probably as much as I need to scream!

Some days are just like the world is moving too fast for me. Then when I step back and take a look at all that is being done for me by all these friends hovering around, I realize, once more how lucky I am.

However, that said - I need to unload on you ladies over tea. Yesterday I learned the Hospice office in Custer is closing on the 15th, leaving me to make other arrangements. Then I find out the pulmonoligist has ordered oxygen to be delivered today. Why? My supposition is that the overnight Oxygen test with bi-pap is still running low. And, I do know that talking and breathing are not working well together, but how did he know?

Then, add to that the housekeeper did a thorough cleaning of the kitchen yesterday and put all the jars with jellies in the refrigerator and pantry. (Tim had left at least six of them on the kitchen island for weeks!) Last evening he discovered the counter was bigger (more work space, maybe?) and had a fit that now he can't find anything. He is still upset this morning. No housekeeper today so I am the target of his pouting and outbursts of frustration. LOL I know it will end but in the meantime, here I am stewing over what I can do to "fix" things.

I am worn out and it is not quite 10:00AM --The sun is shining and the snow is gone so the storm has moved indoors and into my head. Maybe I'll roll out to the deck with my Kindle and Miss Kitty on my lap. She appreciates me and isn't phased by all the obstacles I find overwhelming.

Thanks for listening to me grumble.
Ladyinn is offline  
Old 04-05-2011, 11:59 AM #873 (permalink)
abbas child's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Eastern Shore
State: Maryland
Country: US
Diagnosed: 07/2007
Interest: I have been diagnosed with ALS.
Posts: 2,184
abbas child is on a very distinguished road
abbas child abbas child is offline
Extremely Helpful Member
abbas child's Avatar
Join Date: 2008
City: Eastern Shore
State: Maryland
Country: US
Diagnosed: 07/2007
Interest: I have been diagnosed with ALS.
Posts: 2,184
abbas child is on a very distinguished road
Default Re: Come For Tea

Diane, sorry your day has started with a bomb! And to have the Custer Hospice closing is going to mean starting fresh... I hope that is resolved by someone soon. Regarding the oxygen, your Pulmonologist may possibly know about the Hospice closing, and since some Hospices deliver oxygen on the first day automatically, he may be keeping you covered... maybe. I sure don't know.

Your kitchen story is amusing, since I don't live there. Phil cleared off counters a while ago to make more working space. He also unknowingly left my fig preserves out on the very messy kitchen table for weeks. I have no access to most of the table...but in seeing the shape of the lid suspected it was the fig preserves. Sigh--I made him throw them out. My "must haves" include a roll of paper towels and a full glass of water with a straw. The paper towels keep migrating to the counters... in the back against the wall, no less. With a paper towel and a glass of water I can clean my hands...and of course, having something to drink is a plus.
abbas child is offline  
Old 04-05-2011, 08:39 PM #874 (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

Hello Ladies (and Gents, if youre around).
I apologize for my absense. Ive been lurking... But not posting. Been in a funk again lately and I never really know where or how to jump in. I tend to isolate when Im down so that is why ive been away. How sad is that?- even on the dang internet i have social issues... ugh.
Having the same issues as always. Money, issues with childs father, issues with PALS and his family, and just a feeling of- i dont know, gloom. Questioning my life alot. Realizing that i am almost 30 and havent done anything yet. And most likely, wont get to do much given my circumstances.
Wondering why Ive surrounded myself with people who are jerks (not here, in REAL life- lol). People who dont support me in anything and just want things from me. Seems like someone is always standing with their hand out. Maybe one of my great forum family members could teach me how to say "no".

So the other day, while stuck in a deep thought- i had an epiphony (sp?). I think I am starting to realize why its so hard to be a CALS. Other than the obvious physical aspect- its the emotional issues thats the killer. IMHO- Pals go through hell emotionally (and physically, too of course). But eventually, they find a way to put the emotions aside and get on with living and enjoying things. Not all, I know, but in general. I know this to be true because my own PALS has stated that he distances himself from the disease as much as possible because it is all too much to bear. So theres a sort of disconnect.
Now, for us CALS- well, me at least- I cannot acheive this disconnect. I feel all the emotion that my PALS would be if he'd allow himself. And i feel for myself and his family and on and on. I cannot just go on with life like all is ok. I can try, but at some point, something snaps me back into reality and reminds me how fragile it all really is.
The constant care that is needed is exhausting alone, but when you add this emotional aspect- its hell. I would much rather do the physical than the emotional but i dont have that luxery. i havent found the off switch yet. sort of afraid that if i did find it and switched it off, that maybe my PALS care would be affected.
I see im rambling. so sorry. just stating the obvious, i suppose.

Hope you all are well. Think of you all constantly.
LizT is offline  
Old 04-05-2011, 09:10 PM #875 (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

could use a good pick me up... anyone?
LizT is offline  
Old 04-05-2011, 10:17 PM #876 (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: 1,835
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: 1,835
Alyoop is on a distinguished road
Default Re: Come For Tea

Liz. I have been out and found you a Pukeko that makes a noise. Will pop it in the post. My other thing should arrive soon. I will post longer soon but need to pick son up then do guitar run
Aly
Alyoop is offline  
Old 04-05-2011, 10:49 PM #877 (permalink)
Very Helpful Member
 
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,417
laurel is on a very distinguished road
laurel laurel is offline
Very Helpful Member
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,417
laurel is on a very distinguished road
Default Re: Come For Tea

Liz my girl you say you fear you will never make anything of yourself as you are already nearly 30 years old. First of all you have a beautiful and kind soul which many don't, and that is something that can't be taught and is priceless. You can be anything you set your mind on being as you have so many years ahead of. Yes, right now you have obligations and financial things holding you down. That won't always be the case. I came from a pretty impoverished background, married young, and seemed sort of dead ended myself. But I plugged away--trained to be a LPN and piled up some money and got my RN and degree after age 40. The turtle will win the race. You have lots of time ahead to achieve all your dreams. Now what kind of pick me up should we have? I like lime margaritas with lots of salt on the rim on a sunny day, but it is pouring rain here so maybe a nice hot chocolate? Chin up Liz!
Laurel
laurel is offline  
Old 04-05-2011, 11:01 PM #878 (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: 1,835
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: 1,835
Alyoop is on a distinguished road
Default Re: Come For Tea

Right, I have 10 minutes before guitar.

Sorry you have been feeling low Liz. Like laurel said, you have an amazing heart and oh so young still. My eldest is 26 this year and I see her as just starting out! You have so much ahead of you. You also have an enormous amount on your shoulders at the moment. It's onwards and upwards from here. I treasure your friendship so very much and you bring Joy into my life. It's selfish of me, but I need you and have missed your daily chatter. I know what you mean about hiding away when you are low. I do the same, but what is good is your ability to always pop back up!

Dianne, hope things are now looking up. My husband hates it when I move things about. It amuses me as he doesn't exactly do much in the kitchen anyway.

Ann hope your neck is getting the idea of where you want it to be. I can't imagine how awful it must be.

Peter happy birthday to you, hope your day was great and you had a big fattening chocolate cake mmmmmmmmmmm

Helen glad your house has gone on the market. Hope it sells for you. How can I view it online from here? If anyone wants to view our house I think it's still online. You need to g.....gle signature homes.co.nz and search planned perfection. Stupid name of the article!

Well 10 minutes is up so off I go again! Boy being a mum is exhausting,,,,
Aly
Alyoop is offline  
Old 04-06-2011, 12:02 PM #879 (permalink)
Ladyinn's Avatar
Member
 
Join Date: 2010
City: Custer
State: South Dakota
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with ALS.
Posts: 402
Ladyinn is on a distinguished road
Ladyinn Ladyinn is offline
Member
Ladyinn's Avatar
Join Date: 2010
City: Custer
State: South Dakota
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with ALS.
Posts: 402
Ladyinn is on a distinguished road
Default Re: Come For Tea

A break in my hectic morning and time for chatter and tea.

Liz, you are stronger than you think and when you aren't around us, we miss you. With limited energy for typing or speaking, I've minimized my private communications but enjoy this thread and all the girl-talk.

Well, the oxygen arrived yesterday and is hooked into my bi-pap. I am now ready when the astronauts are set to take off!

I've arranged for our trip East - leaving here on May 8th and driving to Pennsylvania with the memorial scheduled on the 12th. Driving to Delaware on the 13th and Tim got us a ticket package with handicap access, wheelchair lockdown, near restrooms, at the Dover races on the 15th. My first experience at Nascar.... never on the bucket list, but what the hay.. I am ready for a thrill!

Ann, just think of all those mornings when you were teaching that you wished you could stay in bed -- and now you can!

Helen, my house is on the market also - keep your fingers crossed and I will do likewise.

Aly, you make me tired just reading what you are doing. Whew! Please take care of yourself.

Nap time --
Ladyinn is offline  
Old 04-06-2011, 04:26 PM #880 (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: 1,835
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: 1,835
Alyoop is on a distinguished road
Default Re: Come For Tea

Dianne I hope you enjoyed your cup of tea. Hope your house sells as well. I hate having my house on the market. You feel like you are sitting on the edge of a precipice the whole time. Will they put an offer in? Will it be a silly offer?

We sold our 10acres and house last June. One of the offers was OK price wise, but they wanted to not pay for 8 months and rent the house off us for way below the value for rental. That didnt bother me as the offer was OK, but when I said they could rent all the house and land except the 2 back paddocks that my horse was living in, they said I would have to pay grazing for her at the commercial rate. I laughed hysterically and said I was insulted and go away. The cheek of some people.

Well its raining again today. I have been on the treadmill, cross trainer and weights. I cant eat any less without taking to my bed with exhaustion, and cant shift the weight again. I think I am getting more muscle, so hopefully thats the problem! I just cant excersise as much as I need because of this darn neuro thingy. I am grateful that I can excersise, so why I can I am doing my best. I watched biggets loser USA last night and I cannot see how they lose 5 -10 pounds a week. I can hardly manage 1 pound. Moan moan

Diane your trip sounds great and I hope the O2 will help you. I am going to have to go on google maps to find out where the heck you are off to?

better let dogs out, feed horse, then who knows. I have heard that I may have another injection training to do and this time its where I live. (one of hubbies patients). Its handy having inside information It will pay for the hairdresser yay.

Love to you all
Aly
Alyoop is offline  
Old 04-06-2011, 04:28 PM #881 (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: 1,835
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: 1,835
Alyoop is on a distinguished road
Default Re: Come For Tea

Oh my I am being moderated for chitter chatter. Its so infuriating. Everything I write now, poof, gone to the cyber police. It makes it impossible for us to even have a chatty cup of tea.
Aly
Alyoop is offline  
Old 04-06-2011, 04:29 PM #882 (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

Thanks everybody.
Laurel- I really appreciate that you see my efforts in trying to be a good person and for saying i have a beautiful and kind soul. I feel I try so hard everyday, and most days it goes unnoticed. But your comment shed some light on the situaiton and showed me that maybe others do notice, but just dont say anything.

Aly- Ugh... Where to even start. You are my go-to gal. I hope you know that. I know I am still young-ish, and supposidly have all this time- but do I? How do I really know that? I bet all of our PALS here thought the same thing and look... Im not really concerned about health issues (i should be, but dont care at this point in time), its more like because of how isolated my life is becoming the more time Im with my PALS. He is only 52 and he is already on a vent- so in all reality, he could be around for another 20+ years. When his mom is gone, I am literally all he has left to care for him. So yes Im young and all, but i wont have the freedom to go and explore...
Just down lately. I hate to be the tea party pooper...

Diane- I love you dearly and Im glad that you are still able to read and enjoy this forum. Im also glad that you save up some energy coins for us and drop in when you can- I always love reading what you have to say. I now understand why I havent gotten responses to my PMs and visitor messages... Wish I could change that for you dear. In a heartbeat...

I guess Im on one of my super-lows and cant seem to swing it back up at all. Feeling... just... devistated. that pretty much says it all...
Love to all of you.
LizT is offline  
Old 04-06-2011, 04:29 PM #883 (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

BTW- what do you all think of my new signature?
LizT is offline  
Old 04-06-2011, 05:08 PM #884 (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

Diane, have a wonderful trip, but don't forget the earplugs! I would LOVE to do something different that someone else arranges for me.

Aly, my house MLS # is 71209869, and I think you can just go to mlspropertyfinder (with the dot com after it) to see it... I'm looking at a house on Sunday as well, so keep your fingers crossed for my family and I!

Liz, you DO have your whole life in front of you, 27 is so long ago for me... and come to think of it, my favorite decades were definitely my 30's and 40's! Not so much the 50's here... I like your new signature, sometimes it is best not to think too much. TV is a good antidote for thinking!
Think of it this way... you're never too old to start anything! I didn't start college until I was 22 for financial reasons, yet I graduated and have worked in my field ever since. I didn't have my last child until I was 41... Guess I'm just a late bloomer. On the pickmeup note, I just made brownies, and had one in your honor. Sending you hugs, life has so much more for you, maybe you'll go on and have some great invention to help us all, or help solve the mystery of what's going on with us. (Sorry, I'm almost thinking of the song from the Titanic that my daughter loves so much, but life will go on... bad analogy I guess)

Making supper, and then the boys are off to Boy Scouts. Report cards came in today, ok for the younger one who struggles, bad one for the 8th grader who should have all A's... I'll be talking to the school again about him I guess.

Had tea with my Mom today... always wonderful to see her!

Love you all, you make my day!

Helen
HelenL is offline  
Old 04-06-2011, 05:31 PM #885 (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

Helen- thank you. i know you are right, its just sometimes hard to see the light when youre down in the well so far...
hoping i can swing back into normalcy soon ( whatever THAT is...)
I heard my signature in a computer commercial (i think) and thought it was hilarious!
Think I will take a look at your house- just for funsies.
love you much.
LizT is offline  
Closed Thread

Tags
back, work


Currently Active Users Viewing This Thread: 3 (0 members and 3 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 07:41 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