Good Thing I'm in "Acceptance" Mode - LOL

Madalot,

My heart goes out to you. You are dealing with a tremendous amount of change in your life, but it does seem as though "acceptance mode" is bringing you some real peace of mind. And that's as important as learning how to conserve the little energy you have for what you really need it for.

It's good that the Kindle has brought reading back into your life. It's good that you've solved the problem of getting the daytime recliner naps to be done with the ventilator instead of without. And as hard as it is living with the continuing physical restrictions caused by your medical condition, it's good that you are able to put your organizational skills to use to come up with strategies for coping.

Here's hoping that things start to stabilize and that accepting "what is" allows you and your family to focus on the truly important things in your life such as your relationship with your husband and kids and the joy (as well as pain) they bring to your life.

The book radio schedule is online (SXM)--make sure you set your time zone when you display it--it always changes to EST.
Monday thru Friday is half hour snippets (usually repeats later the same day)
On the weekend children's programming dominates the daytime, while catch-up' occurs in the evenings and wee hours.
They are always changing stuff, so you do have to keep on top of it.
I've recommended this to people who can't see well enough to read.
I tried listening online (cheaper)--but it's a royal pain near the tailbone; as it randomly loses connection--on ANY computer.

Mad,

I do not post often but read on a daily basis. Your trials and tribulations are burdens to you that you have turned into an inner strength which will help carry you through the rough times. This forum has a lot of caring people that you can utilize to build on that strength. Each drawback should be seen as a challenge and each triumph should be viewed as one in the win column. Remember that a positive outlook will help you to overcome any negativity that life throws at you and in turn you will feel an inner peace.


Taz

You all are very kind and very sweet. I appreciate the kind words.

Of 5 children (I am the youngest of 5) I am the only one afflicted by whatever genetic defect(s) is plaguing me. Even though I hate whatever is happening to me, if I were given the option of switching with one of my siblings, I wouldn't do it. I don't wish something like this on anyone.

On the other hand, sometimes I see TV programs illustrating MUCH WORSE physical issues and that makes me thankful and grateful about my challenges.

I am trying really, really hard to be more positive and just cope with all of this.

It's amazing when you can do when you have to - kind of like cpap! LOL