Come for tea

I just enjoyed a couple of chocolate covered strawberries! Yummo! I only have 3 left :sad:

were they a valentine vicki? enjoy one for me! have a great weekend

Yes they were. YOu have a grat weekend too! Hugs.

Kim,
I just read of your troubles and am so sorry. Life is hard, isn't it? I will keep you, your dad, and your hubby in my prayers in hopes that he will come to his senses.
Jacquie

It's so lovely to see that " come for tea" is still ticking along. Thank you so very much to all who post here. Hugs

O.K., I can't sleep, so here I am.....again. I've been thinking about starting a "new" thread for people who just want to talk. Period. About non-related things, anything. Is that allowable? Or is this here the thread already? There seems to be a category for everything else.
So we're laying in bed, wide awake, talking about our situation.....where we are on this journey, where other people in this forum are, all the different scenarios I've been reading about. We realize that we are among the very luckiest of the lucky (if you can call this monster lucky), compared to most of the posts I read, partly because it is still early for us. My wife, who is a "Trooper" for sure, is probably taking all of this as good or better than I am. She, so far, is not personally reading this forum stuff, but she knows I am, and I have been relaying a lot of it to her. We we're just saying how it has been very helpful to me to be able to "vent" here (not that I've blown up or anything), but that it has given me a place and community to talk "openly" about what is happening to us.......the same thing that is happening to all of you.
We have not made it public "knowledge" yet, in her case, because she is still trying to work, and it would make that almost impossible if certain people knew. Also, for many of the same reasons, we have not told any of our family and friends.....the whole truth. We have said (to the closest and most trusted ones) that she is having "some health issues", and are leaving it at that.....for now. We realize that, at some point not too far down the road from now, we will have to admit what is going on. At that point, I guess it doesn't matter anymore who knows what. But in the meantime, this "club" is a life saver for me.
I have not really "met" of "friended" anyone yet, and that's o.k. (maybe that will happen as time goes on), but I somehow am beginning to feel like this place is becoming more familiar. I have taken quite a lot of comfort from many of the posts, Sequoia's for instance, and I can see who the most active people are, obviously.....all off whom seem to have a really good attitude about this dastardly disease. For that I am grateful. Just knowing that each of us are dealing with this the best we can, and keeping our chins up in spite of the difficulties, is very encouraging.
I have read so many of the posts, and several of the blogs. You guys are a tough, but caring and compassionate bunch. I get a charge out of Johnnyliverpool's posts, he should help us out on the joke thread! And marypat, vickim, ottowagirl, and that "lady warrior" (I can't recall her name right now), among many others, are beginning to seem like people I know. Sort of strange. Cyber buddies, even if we're not talking directly back and forth to each other as such.....yet.
That is kind of what I am thinking with this post. A place where anyone can talk to a particular individual, or the whole group, whatever, about anything that happens to be on their minds at the moment. Not as private as email, not as public as Face Book, but something in between......like this forum, huh? But more along "non-issue" topics. We can't, or shouldn't, dwell on our afflictions every waking minute, should we? I know they're on our minds all the time, but do we always have to talk about that?
I guess the moderator will decide for me, or I will see other comments (I noticed that there are other people looking at various things, even at this hour) if this is a good idea.
O.k., I'll shut up for now, and give someone else a chance.....see what happens.

Hang tough,

Steve

Good morning Steve,

Tea is the perfect place for any topic you want to discuss. I understand why you are both reticent talkiing openly about your wife's diagnoses. It's my experience that most people are incredibly sympathetic and understanding. I recall our conversation with the neurologist on our fateful day; he told us exactly that. He is right. Keeping it in is a terrible burden, for you and your wife and for your trusted few. Once it's out there, you too may be pleasantly surprised at the length friends, employers and strangers alike will go to accommodate you and be just plain caring. Amazing acts of kindness have come our way, and from the most surprising sources. I call them angels... disguised as people! People do want to help. You just have to let them.

We also feel fortunate, yes, in spite of this disease. We have traveled more, socialized more, prayed more, cried more, hugged more, laughed more and just basically stopped taking anything whatsoever for granted. We count our blessings, and the list grows longer everyday.

I think I am super lucky to have superman as a husband. I dare say, your wife has one too. My husband, early on, told me that ALS is a lifestyle change. And so it is.

Here we talk about alot of things to include hair removal! Don't want to scare you off but just say be prepared for anything. We are a crazy loving brave set of people and I love everyone of them. It has been a great comfort for me coming here.

There are threads for movies and reading in memory of those who started them and we keep it going. You have been really funny on the jokes thread. I love the happiness now thread for inspiration and I miss Sharon alot, she added the most beautiful posts. I have been posting there to keep it going and for my own inspiration.

You and your wife will find lots of love and friends here. Hugs.

Good morning all,

I had my post finished this morning and ready to submit, when I hit the "go advanced" button, and it vanished! Irretrievable! So, I will start over.

Sorry for the typo of ottowa, in ottawa, ottawa girl. It was late. Also, Barbie was the name I couldn't come up with last night, obviously. I was drawing blanks for some reason. I am glad you liked some of the jokes, vickim. If just one person gets a laugh, I will have something to feel good about. I enjoy reading the other jokes too, you guys are good! This frankb guy has had some good ones. All of them are a pleasant break from reality, so to speak, even if it's just for a little while.

Now that I have joined y'all (including you, Lolita, one of my fellow Southerners) on this fateful journey, I want to try to provide some relief to the always present plight that we are all constantly aware of. I realize that none of us will be able to escape this "beast" (which I thought was the perfect word to describe it, posted by someone I read a month or so ago). But, as most all of you keep re-emphasizing, a positive attitude is invaluable. It sure beats letting yourself get too down and out, which is the first tendency and totally understandable, given the challenges we all face. After you have had time to accept whatever role you have in this, almost everyone has adopted a very admirable outlook. I, for one, will try to remain as upbeat as I can, although I know that this is sort of like a roller coaster ride we're on, with it's highs and lows. That is one of the main benefits of this forum, being able to lean on your "mates".

Thanks again for your replies, I hope others will jump in here also, and tell us what's on your minds......other than what we already know is on your mind.

Talk to me, johnnyliverpool. You are a riot! Plus, I love the Beatles, they are the all time greatest band that ever lived, in my opinion.

How about you, dbltree? I am not seeing anything from you lately. You were the first I responded to, what's going on in your life......besides this?

I'll try to learn more about the "proper procedures" of this forum as I go along.

Hang tough,

Steve

Yes Johnny is a hoot. I love his wit. I agree that the Beatles are the greatest. I am aging myself though. I also like Adele. My music is all over the place, depends on the mood I am in, but Beatles is always in there. Although much to my hubby's dismay I don't care for alot of country music, I do like Johnny Cash though. Ring of Fire is a favorite.

You know it is okay to post when you are feeling down or angry and need to rant. We will listen and try to help as best we can. It is impossible to be cheery all the time. Hugs.

Steve - I'm feeling for you. Glad you're here. I, too, told no one for a while. For many of the same reasons you aren't and, to be honest, we could barely deal with it ourselves and I could not handle others' shock/surprise/grief. We'd been private during all the testing and then couldn't blindside them and explain things when we could barely talk about it. It was tough. And doesn't get easier. Secrecy is a big load to carry. You may have seen on the forum, an ALS diagnosis is an automatic SSD approval, but you don't get your first check for 6 months. That's a 5 month waiting period and you don't get any money (retroactive or otherwise) for those 5 months. I'm not encouraging her to quit - just want you to plan well. As my symptoms got harder to hide, the secrecy was more and more stress on me. As mine presented in my voice, it got hard to hide. Hang in there.

I know the stress of this diagnosis is huge. Keeping quiet about it is hard, too. All I can say is I 'knew' when it was time to start telling people. They were all great and they've turned into a great support group. BTW, if you can go to a local ALS support group, that may help alleviate some stress. My first meeting was HARD to go to but being with people where I didn't have to 'hide' symptoms or guard what I said was such a relief.

mich5, thanks for those kind words, I appreciate it. I think we went through the (what sounds like) typical phases that most of y'all went through. My wife first suspected something was wrong during our six month stay in Germany (Jan. thru June, 2010). There is a story there, but I'll skip it for now. Anyway, she started having leg cramps at night, severe enough to jerk her out of a sound sleep, and make her walk around the apartment for a few minutes. We (I) didn't think all that much of it at the time, figured maybe a lack of exercise, since she was mostly bound to a desk with her computer all day, every day, trying to keep her lab running back home in Nashville. We came back home the first week of July, 2010, and things were still o.k. In Aug. or Sept. she took a fall on the steps going up to her lab, scratched and bruised her up pretty good, but no broken bones. Still, I was not putting it together (she was). I thought she was just in too big a rush, needed to slow down a bit. She knew better, but didn't tell me until a little while later (maybe in Oct.) that she suspected ALS. Even then, I couldn't believe that it could be true. She seemed strong enough to me, but I guess everyone knows their own body better than anyone else, even their spouses. We didn't talk too much more about it until this past summer when we were in Italy at another meeting (she travels around quite a bit with her science, I go with her most of the time). One evening while we were having a wonderful dinner in the hotel where we were staying, she got this coughing attack. She excused herself, and went to the ladies room. After a sufficient amount of time had passed for her to return, I began to worry, and went to check on her. I could hear her through the door, still coughing, so I went in (hoping no other women were in there, thankfully, there wasn't any). By this time, she was red in the face, and struggling for air, gasping between coughs. I started slapping her on the back and finally dislodged enough mucus and phlegm (same thing?) that she started to recover.....thank God! That was the night that she told me that she was pretty sure she had it. I was devastated. Now I had to take her seriously. This was June 7th, 2011.

When we returned home, we began our series of Dr.'s visits, specialists visits, tests of every kind (y'all know all of 'em), nobody giving her a definite diagnosis. As a matter of fact, they said one thing they knew for sure was that it wasn't Myositis, cancer, or ALS! Of course, we were elated....that day. Only to learn later (Dec. 5th, 2012 to be exact) that, Yes, it was indeed this dread disease. Crushed, stunned, numb, every other word you can insert here. So, looking back, my wife actually knew almost two years before all the best Dr.'s and specialists we could get (and correctly diagnosed herself) that she had ALS.

She is the most intelligent person, male or female, I have ever known. Also the most precious, loving, and generous....of course, I may be a little biased. This disease does not care how smart you are, how accomplished you may be, how successful you have become, who you are, where you live, and on and on. None of that matters. She is taking it all in stride, not happy about it by any means, but has recognized that it is what it is. In the meantime, she is too busy to dwell on it, as such. She is taking her meds, dealing with the coughs, twitches, weak voice and other discomforts, but continuing to work and keep her science moving forward, which I find very inspiring and admirable. She will fight until the bitter end, I know. And if she can do that, surely I can too.

Sorry for the long story, but I wanted to get it out there. Everyone has theirs, this is ours. I hate this disease, but I admire those of you who have it, and the other similar ones, and are still trying to maintain your dignity and quality of life. I am determined to help her do that until the very end.

As far as quitting and drawing SSD, that will be her decision (based on the rate of progression, obviously).

All I can say to everyone is:

Hang tough!

Steve

I replied, mich5, but it went to "the moderator"......thanks anyway, in advance.

hi all...i'm one of the old tea group. as alyoop said, i too am glad to see it's still active

Well lets have a cup in your honor! This is one of my favorite threads.