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DeBartolo

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 #1 
there’s lots of people here who have no caregivers; they’re single, they’re divorced, they have no family, whatever - they need to take care of themselves. This thread is for them —

so, here’s the 1st tip of the day - don’t sweat the small stuff. [thumb]

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Robinj

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 #2 
Great advise Anthony! Not to mention even when there is family involvement, most do not "get it".
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
jna001

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 #3 
Why don't you two get a room?

Cakelady

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 #4 
I think that is why these message boards are so important. It's a way for people to stay connected who does not have someone at home or they do have someone at home who just does not get it or understand it.

These forums are very necessary.

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The bond that links our true family is not one of blood, but one of respect and joy in each other's life
Robinj

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 #5 
Quote:
Originally Posted by jna001
Why don't you two get a room?



Why? Do you want to watch, Scumtard?

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
DeBartolo

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 #6 
Quote:
Originally Posted by jna001
Why don't you two get a room?




a room?

how low brow can you get?

we'll take the chalet swimming pool suite at Sybaris or nothing[thumb]

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Robinj

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 #7 
I'm in!
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
DeBartolo

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 #8 
just say when  Smiley



Smiley

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Cakelady

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 #9 
Good lord
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The bond that links our true family is not one of blood, but one of respect and joy in each other's life
Raglet

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 #10 
we could always amuse ourselves my inventing amusing acronyms for jna

Just Not Affectionate? That's my best effort at the moment. The J makes it challenging. Time to get out the dictionary, flip to the 'j' section ......



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I feel much better since I took up heavy drinking
barbara152

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 #11 
                                                                             
                                                                   
We all appreciate the online groups for the obvious reasons, but those who are alone are at much higher risk emotionally as well as physically.


Cakelady

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 #12 
I think the original message of this thread is very important. People who are alone need to keep in contact with people and that is why this forum is important. The more you are involved the more people you meet and friendships can form. I have met a lot of great people from this forum. People that I keep in contact on and off this forum.

That's just my take on things

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The bond that links our true family is not one of blood, but one of respect and joy in each other's life
IrishLass

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 #13 
This is a great topic.

I live alone and in the past I've been very sick. I've since learned to put some safeguards in place so I don't feel so vulnerable and so that my loved ones are left wondering what in the hell to do.

On my end, I take my medication as prescribed. I go to my follow-up Dr. visits and I see my Dr.s as needed in between.
DeBartolo

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 #14 

Smiley who's up for an orgy in Vegas ?



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IrishLass

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 #15 
I posted before I was done.....I've had a difficult time getting this posted this a.m.

To continue.....

So I take care of my illness but I've also made sure that all of my loved ones, friends, neighbors, and family, all have eachohter's phone numbers. They became very familiar with eachother the last time I was sick but now they can be in contact if necessary.

I've given my brother my banking information and all of my passwords to all of my accounts. I suppose I should put something down on paper formally but I have yet to do that.

My office has emergency phone numbers for me and I've asked them to please use them if for some reason I just don't show up. There's no reason I would just fail to show up unless something has happened. My fear is that I lay here dead for days and no one realizes it.

I have notes on my phone regarding what I would like if I am incapacitated as I was last February. Back then I was so confused and altered mentally that I was unable to participate in my own care. I don't want that happening again.

My short-term goal is to appoint my brother to be my Power of Attorney and I really need to  get around to doing this. He's agreeable to it.

The one thing I have going for me now that I didn't have then is awareness. Before I got so sick I barely paid any attention to my health. Lupus was like a theory. It had never been tested. That changed so now I know what can happen. Back then I was taken to the hospital in an ambulance and since then a few of my neighbors have reached out to me and offered their help and support if I need it. This means so much to me. There have even been times when I've been walking my trash to the curb and a neighbor will come out and take it from me so I don't have to do it. I live in a small condo complex and I'm on the 3rd floor. There are 15 stairs to get to the ground level and I'm still very careful about those stairs so to have a neighbor take my trash out is so helpful.

Everyone around here now knows that I was sick and while I'm better now they're still supportive. It makes me feel less vulnerable. I did try to find a condo on the ground level but there aren't any available right now. I worry about those 15 stairs everyday but I take them slow and I use the hand rails. I probably look like a little old lady but being careful is part of what I do now.

Because I didn't take care of the lupus before all of this happened the loved ones in my life didn't pay any attention to it either. It just wasn't a part of who I was. Now it is. And I feel better knowing that there are people in my life who are concerned about my health and who have seen me at my worst and who understand what lupus is and how it affects me. We all got an education.

I still have days when I wonder if I'm going to wake up the next morning and I still have medical issues that I just can't seem to get through but I also have a support system who understands and who cares. For all the hell I put them through bonds were formed. My brother can call my neighbor now, my neighbor can get in touch with my daughter, my office can get in touch with my family.....I feel pretty well covered in the event I get sick like that again.

And having gone through all of that led me to this website. I had never had any interaction with anyone with lupus before finding this site. I come here everyday, it's part of my morning routine. And while I may not write or comment I am reading everything that's written and that really helps. Thank you for that. [smile]







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