Ms. Pie

Dear Marta, we are just in hell! While I thought I knew it was going to be this, I wanted to hold out hope that it could be something else. My sister, her husband and her daughter didn't want to even think it could be ALS. But, she did go to the clinic on Tuesday and it was confirmed. It was one thing to keep to myself with all of this but now the crying and the fear and shock I'm seeing in my family is horrendous. I talk to my sister twice a day and we can't stop crying. Her husband is trying to get control of everything, her daughter has moved in with a girlfriend. It's just hell!!

Just in casevyou werr incognitoi!

Okay......I've given all my pretty clothes away and due the loss of my hands and arms switched to easy to get on clothes.

Elastic waist pants, no buttons, and extra large tee shirts. (I didn't even know petites came in extra large)

The question is......when can I burn the bras without looking like a total frump? LOL

Hi Marta,
I messaged you a while back about Kel. She asked me to get on the site again and contact you, so you can tell the Tea friends that she is in the hospital with a severe case of Bronchitis. Her O2 levels are too low and infection too high to go home. She's been there a while and doesn't want her friends to worry that she hasn't been on the site. Between you and me though...Kel is a strong young lady..and would never admit this.....but as of late she has gone downhill quite a bit in physical and emotional strength. If you could let her friends on the forum know I would appreciate it very much...and of course all prayers welcome!
Thanks so much!

No problem... my is Donna.

Why 6 months until you receive benefits? If you don't mind me asking...

My work has short term disability for 12 weeks then it goes into long term disability. But there is a gap in between them of 3 months. I worry about those 3 months. My husband and I live paycheck to paycheck. We were not prepared for this disease and you know we just got married in July. We don't have a big nest egg to fall back on. I hope all this goes smoothly and we don't go in the hole and not be able to recover. Our friends have a couple of fundraisers going this month so I'm sure that will help us quite a bit.

You are the last one on the list...yippee....so Ed should be contacting you soon ...if not email him at
[email protected] love ya

Marta do you want to be in Pilot? let me know and send me your email address if you do.
Love you
sharon

Yes I get over confident at times too. Especially if I'm feeling better on some days. I try to do to much. I will. They will keep check on my breathing to make sure it stays above 50% for 3 months and then they will do the surgery. I'll let you know how it goes.

I'll be going out on disability soon. I hope everything works out for me and we don't get into a bind financially. Hugs to you!

Bo, BOYFRIEND . LOL . I think they decided on Boulder. You are 2 funny.

Happy Day. So much to tell ya. First my niece is moving to Colorado with her BO, I feel ok about it because I know good people live there. I checked in with Annie's Phil, poor guy said he is so lost without Annie, he said after 36 years of "us" he is lost. Such a nice man, he told me when we go down the ocean (ocean city, md) to stop by his house on the way. I think I should adopt him. lol

Hey... I'm at Emory Hospital having a screening for the stem cell trial. Had my first day of tests and will have another tomorrow. I had a good scores on my VC and NIF breathing tests today. Strength tests went well in the upper part but my legs of course are pretty weak. Going to have another EMG and an EIM test tomorrow. I've not had the EIM test so that will be a first. Only bad thing that happened today was I fell in the shower this morning and my whole left ass cheek and left shoulder is bruised and very sore! How are you doing? You still working?

Happy New Year. I hope you have a wonderful year this year. Hope you had a blast.

Happy New Year shuga pie!!!

Happy New Year to you too!.....I'm doing ok. I hope you are doing well this brand new day! Love YOU & {{HUGS}}

I have lost the use of my hands and arms, can not take steps alone due to my balance issues and am beginning to lose my voice. Despite that, I am still able to enjoy nature and the outdoors.

We live on a canal off the intracostal waterway so there is always plenty of shore birds, manatees, otters,and many other interesting things to watch. The beach is a mile away and we can drive to watch the waves. It's not perfect but not bad as second best.

I know it must be beautiful in Colorado too. We are taking it one day at a time and my spirit is pretty good. Having a sense of humor seems to help me a lot.

My mantra has been......as long as I can feel the sun and wind on my arms, see the beauty of nature, hear the songs of birds and enjoy the laughter of my friends then everything is good.
I hope you will enjoy those things this year also. ttyl