Now how did i know Alan would get his pump?? he he
But i'm sorry you had to go through so much,these things
shouldn't happen. Good for you and Alan,some people
now a days just don't want to do there jobs. sweetie Sue

Hey Sue:

He didn't get the pump YET!!!

We shall see. Delivery is on the 18th!!

keeping toes and fingers crossed.

be well

Mel

Melody, i am sorry i haven't been keeping up with all of the posts regarding this, how is he going with this treatment anyway, has it made differences ?

Hi Brian:

I'll be honest. When we first were told about IVIG, we probably didn't understand the whole concept and what it would do. The doctor said "it migh help, blah blah".

Now I gather, it doesn't get rid of the pain (the day of the IVIG, his pain goes away) but after that, it had a very little affect on his pain, but he says it has helped his balance. So will they continue with this? I have no idea.

At his next appointment with the neuo, I gather they will discuss whether or not to continue this until October (he's approved until October).


Melody

Ok, thanks Melody, it's a pity that the benefits don't last longer than they do, but 1 day without pain is a lot better than none and the balance issue is a positive too, i hope the more treatments he has, will bring more lasting rewards.
all the best
Brian

Thanks Brian:

Yeah, all we really do have is hope, and more stress-free days!!!

Wishing the same for you!

Melody

Hey Mel:

I was on the IV's in the early 90's. Two good things I recall about the infusions were that, my healing improved dramatically and it helped the weakness considerably. I had lower body weakness at the time and at first the doc said he thought it was from steroids. After I began the infusions that totally went away. (Now I have upper body weakness.)

I don't know what slow nail growth has to do with connective tissue disease, but mine also began growing like mad and were very long and strong. Overall, I felt a lot better. Some of the neuro symptoms cleared up. I would do these again if I could...

Glad Alan is getting a pump. He is one lucky guy to have you running interference for him.

Cathie

Thank you Cathie:

I only wish that someday, there might be someone to do this for me, (god help me, I hope I don't need any interference). See, there's usually one spouse that Does stuff. I'm that spouse. Comes easily for me.

I thought, when I got older, my son would be there for us. But that is not to be. Takes a lot of getting used to believe me.

Oh well, when I'm not fighting waterbugs or ants, I'm cooking up chicken and patatas. Just made honey teriyaki chicken. Alan about went out of his mind when I gave him a sample. I wish I could use Sesame seeds but he's got diverticulitis (never had any problems with that, they found it during a routing colonoscopy) so that means no seeds, right?? But a sesame chicken is to die for if you know how to cook it.

Hopefully the pump will arrive and I'll know what do to about it.

Hope you're in fighting form today!!! lol

Melody

I just called to confirm Monday's delivery and the woman said "You are getting a delivery of a Gemstar Pump and Gemstar tubing, along with the Gamma and other things. You are getting a delivery, not Fed Ex.

I asked "do I have to do anything with this pump, like charge it or anything?" and she replied "No, it's a battery operated pump".

So I just have to call and confirm which nurse they are sending over.
This should be a little odd because I haven't spoken to the Visiting Nurse Company since the Leaky bag thing.

Oh well. At least things are set up.

bye for now, Melody

I have nothing to add about the pump as I had no idea what this was but want to add to you that your amazing. I think this when ever I read your posts. Your husband is lucky to have you. I can't imagine with your own issues doing all you do for him. I know in the past you said you had some help but is there any family or others that could do more? You have an awesome spirit and helps me try to feel positive. Ok now go pamper YOU!