You read in one of my posts, that I had help??? Let me know which post, so I can call that person up!!! lol

No, there's nobody. I'll be brutally honest. When family members found out about my son being aspergers and having a gambling problem, not one person ever asked about him in 5 years. People are just not comfortable.

And forget about asking us if we need any help. I believe people have their own issues and their own stories and their own needs. I found that out years ago.

So I've learned to payfor what I can afford, cook all meals (and Alan now gets more involved because I would kill him if he didn't). No really, he's a lot more involved in helping me because no one can do all these things. But I am the one that makes the appointments, speaks to the doctors, orders the stuff, helps the nurses when they need help with the stuff, (holding a pole, or holding his arm, or whatever). I mean, someone has to do it and I'm here so I'm the one.

Take for example what I did today. I had to go on the avenue to make a big wash. So I put the clothes in the machine. The wash takes 35 minutes. I went to various produce stores because vegetables can vary by $.69 cents a pound, so I walk up and down and check and get the best value. Then I got stuff in the hardware store. Then I went to the supermarket and bought other stuff. By the time I get back to the laundromat, my wash is ready to go into the dryer. I put them in the dryer, then I go to the fish store, and I even had time to get my eyebrows waxed. That takes all of 5 minutes. So I take my parcels, go back into the laundromat, take out my clothes, put them in the bag, walk home. Then I started to cook dinner. I said to myself "Am I tired because I did lots of stuff today?? or am I tired because I'm almost 60 and when you're my age, you get tired".

I hope I got tired because I did lots of stuff today.

I just fed the King, and I will now eat my fish and salad. And I'm hungry. Boy am I hungry!!!

lol, Melody

see the charger hook up pic...

http://www.hospira.com/hspcadin/hspc...IPSGemstar.pdf

It's like a re-chargeable toothbrush, you should get a cord with it and charge it overnite before it's needed...to be cord-free during infusions. -j

Don't think it has a cord. Actually, when the lady told me "you are getting a gemstar pump, I distinctly asked her "do I have to charge it or something?" and she responded "no, it's battery operated"

Maybe she really doesn't know, but she was in the pharmacy department and they are the guys who prepare the Gammaglobulin.


P.S. I just took a look at the link. If you think I know what to do with this thing, forget it. When the guy brings it, of course I will ask him. I wish I could just hand all this over to Alan, but he can't even operate a remote correctly, let alone give him reign over an infusion pump. Now that would be funny!!!

Hi Melody -

Depends on if Alan is getting a waist pump or standing pump! My pump is worn in a little pack around my waist, is preprogramed by the pharmacy to run at the correct rates (the nurses can adjust and change it if necessary), and runs on batteries they supplied... They also delievered to me and I had to sign for it - cause they cost around $5,000 dollars.... (the ivig bag goes right inside the pack too - so you can move around and dont even realize its on) (except for the obvious IV in your arm)

If its a standing pump - as Dahlek said - probably have to charge it - but the delivery person will probably be from the agency and should let you know what to do with it!

Oh my god, standing pumps, waist pumps.

I'm going pump nuts!!!! I had no idea.

Thank god, I'll be home to accept this and make absolutely sure, I know what I am supposed to do.

Never had a clue.

Thanks to you all

Melody

I'm sorry I thought you had some help. You still have a good outlook. I know you say people are uncomfortable and I see that in my own life with people calling and helping. I think people really need to look within and think if it were them. Even a phone call to check in makes one feel better you know? I hope your husband and you feel better.

Thanks you Danielle:

You are absolutely correct about people phoning others and looking in on others. Especially when family members do not do this.

It's very important to at least have some knowledge of your neighbors (I mean if that's possible). I'm probably the only person on these boards, that if I walk around the corner,..before I get to Dunkin Donuts, I will probably be approached by 30 people saying" "Hi mel, what's up?"

I went for breakfast with Alan one morning and we are talking just around the corner. At the end of that corner is Dunkin Donuts. Before we get to Dunkin Dounuts, we have to walk up a long block. Must be 25 houses on each side of the street. And some are multi-dwelling houses. So we are talking lots of people.

I will never forget the day that everyone was outside (was a beautiful spring day). And people were walking their dogs. All these dogs ran up to me and started barking at Alan. He looked clueless. And then the people were going "Hi Mel, what's up, how are you". I knew absolutely every one of these people and Alan (because he is a very conservative, shy kind of person), did not know anyone by name. I prepared him before we took the walk. I said "we will probably run into lots of people, because I know lots of people, so just smile and say hi." And that's exactly what he did.

Now if this took place a few years ago, he would have told me "don't talk to anyone, let's cross the street". But I had a good talk with him and told him "you need to better your social skills, or people will think you are stuck up" He had no clue that this is how most people perceived him.

Well, you should have seen the look on his face when we walked down the block to my friend's Vivian's porch (I sit on this porch ever night from 6 p.m. till 8 p.m. ) and we all get together. So as we pass by, there's the dog on the porch wagging it's tail and it gets a load of Alan and starts to bark. I went up to the dog "BABE" and said "Babe, this is Alan, now make nice" I told Alan to calmly approach and talk in a soft voice. Now when Alan passes by Babe doesn't bark and Alan goes "hi Babe". It's the same with Whitey, Angel, Nunzio, Tabitha, and Parmigiana". All the dogs on that block. Oh, and there is Shep. He's a great big German Shephard who no one will go near. He is always on a leash. Even the people who live next door won't go near him. He has a reputation for tearing your head off. Took him a long time to like me. His owner, my friend Maureen, lost her son on 911. So I tried to hug her one day and the dog went for me. I never had that happen. She said "no one can approach me. No one". Still true to this day. If she's walking with the dog, you can't go near her. But once she's sitting on her porch and the dog is there, I can bend down and pat him. He has to smell me first.
And I have to bend down very slowly. No harsh movements.


Alan would never go near this dog!!!

Alan calls me the Mayor of Bensonhurst. When I was in the hospital and almost died from Gallbladder surgery, they actually knocked on our door, grabbed Alan and brought him out to where all our neighbors were sitting across the street and he had to give them blow by blows of what was happening to me in the hospital. One neighbor actually had him sitting in the porch room with all the other neighbors having coffee and talking about me. Alan had never did this in his entire life. He is not comfortable doing this. But I guess being married to me, he had to get out of his comfort zone.

Now he's still not going out and sitting on anyone's porch but when he walks around the corner, everybody knows him, says hi and he greets the people.

Believe me, if he didn't marry me, he would still be in a rooming house, in his room, going to work, and eating on a hot plate. This is from his own lips.

He didn't have a clue how to socialize. He probably has some asperger traits going on himself. I think it's all about conditioning. If you do something over and over, and you get a positive response, well the next time you do it, it's not so hard.

Took him until the age of 59 to understand this process. But he does.

See, because I really have no family I can call up in an emergency, it's nice to know that god forbid, if something happens, there are 50 people on my block and 100 people around the corner, that we can go and knock on their doors and say "hi, can you help me for a moment?"

It's important.

Thank god, I don't live in the woods like my friend does. She doesn't know a soul. She can't walk anywhere and she has to drive to another town to go shopping. I have never led that kind of life, so I don't know if I could adjust.

But I'm an adjustable kind of person so I guess if I had to, I would.

I would also go to a community center and meet everybody.

Know what I did when I first moved into this neighborhood 15 years ago??

The first night, I went into every store around the corner, introduced myself, said my name, got their name, and said "Hi, I'm knew and just wanted to introduce myself". By the next day, I knew everybody and everybody knew me. Yeah, most people gossip when you live so close to each other's homes. But it goes along with the territory.

I can honestly say, I do not suffer from any kind of social anxiety disorder". LOL

That is one disorder I know I don't have. Now phobias, ... that's a whole other story.

lol
Melody