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Sjogrens Topics => Living With Sjogren's => Topic started by: Carolina on September 05, 2013, 11:35:16 AM

Title: Now it's all no big deal!
Post by: Carolina on September 05, 2013, 11:35:16 AM
Dear Sjogren's Angels,

So today was infusion 3, which I did myself.

With the nurse observing and taking vitals.

Totally ok, no infusion site problems, no side effects, out to lunch afterwards.

The infusion takes an hour.

From now on I'm on my own.

What WAS the big deal?  When I first heard about the idea I was horrified.

Some reasons:

1. At first I thought it was an injection and THEN the realization of an infusion taking much longer than a simple injection stunned me.

2. Then I thought it was ONE LINE (it is four).  And the Hizentra video is like "brain surgery" the first time you watch it.

3. And  the infusion material (blood from 1000 people?) seems bizarre.

4. And the amazing cost (98% or more is covered by my insurance) but it seems overwhelming that anything can cost so much every year.

5. AND the warnings about 'things that can go wrong'.  And do go wrong for some people.

6. And doing it once a week, possibly for the rest of my life.  It seemed like a HUGE deal.

I guess we adapt.  At least I have.

It's easy to do.

It does produce a LOT of little pieces of plastic, I'll say that.

I think I'll switch to evening infusions when I'm on my own.

And traveling will be no big deal, and they send four weeks worth at a time.

Hey, I'm one of the old timers now (almost), how amazing is that?

Hugs

Elaine
Title: Re: Now it's all no big deal!
Post by: finallyadx on September 05, 2013, 11:39:07 AM
 Wow - that is amazing.  Great news!  Hope it continues to be a breeze for you.

Sending healing thoughts and prayers your way!
Title: Re: Now it's all no big deal!
Post by: aussie mum on September 05, 2013, 11:56:17 AM
I am so happy it is working out so well for you. It is amazing how we can adapt to things after first being so overwhelmed.

I have just started self injecting anti TNF therapy (Simponi) for my Ankylosing Spondylitis. I must say, the thought of giving myself injections was quite daunting. It was really the rational side of my brain that had to take over and put it all in perspective. Diabetics... kids need to do this every day and I was freaking out over 1 needle every 4 weeks.

4 months down the track and it is getting easier. My son has a good laugh about me "shooting up" in the kitchen.

Take Care
Aussie Mum

Title: Re: Now it's all no big deal!
Post by: Dolly Dimples on September 05, 2013, 04:11:44 PM
 What a girl ! your amazing Elaine, you seem to adapt  so well to anything they throw at you.
                Bless, Dolly x
Title: Re: Now it's all no big deal!
Post by: Skylar on September 05, 2013, 05:12:45 PM
Wow, I'm impressed with how quickly you adjusted- great attitude.
Title: Re: Now it's all no big deal!
Post by: irish on September 05, 2013, 05:38:26 PM
Elaine, I knew that you would adapt to it quickly. It is no big deal as you say. Of course, sometimes things can happen to make it a big deal, but until that time comes one just goes with the flow. Another hurdle mastered!!!Irish
Title: Re: Now it's all no big deal!
Post by: jazzlover on September 05, 2013, 08:22:27 PM
I think we all are quite able to build things up in our minds! We get better and better at it as we age. ;)
Title: Re: Now it's all no big deal!
Post by: SjoDry on September 06, 2013, 04:52:09 AM
I am counting on this! 1st Hizentra infusion on Sept. 12th  ???

SjoDry
Title: Re: Now it's all no big deal!
Post by: lori on September 06, 2013, 02:04:09 PM
Glad youre doing ok

I knew you would adapt- you have a great attitude and are a tough lady!!!

blessings
lori
Title: Re: Now it's all no big deal!
Post by: Sleepy In Seattle on September 06, 2013, 03:13:57 PM
Awesome!  ;D

We humans can be pretty resilient creatures sometimes....
Title: Re: Now it's all no big deal!
Post by: susanep on September 06, 2013, 06:31:05 PM
So happy to hear it went well Elaine. (my middle name is Elaine) You deserve it.
Hope it gets better each time you do it for many many years.

susanep :)