Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Saturday, January 31, 2009

Updates, Updates - Part 1

Lately, this blog has centered on me. Sorry about that. Maybe it is me all the time that needs the most advocacy! LOL!

Today, I want to start giving the updates for everyone else in the house.

Let's start with the hubby. He's Stubborn. As you can see, he needs a capital S.

We have had the CPAP for three weeks now and do I not wake up every morning between 3am and 6am, because he is tossing, turning and NOT wearing the mask!

The first reason/excuse is that he keeps forgetting. The second one was it was suffocating him. Huh? How can something supplying oxygen to your lungs, brain and body suffocate you? He has a full face mask and anybody who has every seen these things knows they are huge. Not the thing to feel claustrophobic in.

I reminded him that he needs to wear it at least 4 hours a night for it to even be effective...

The third reason/excuse came after my speech. "Well," he said, "I must be doing at least 4 hours, so that's why it is off by the time I start waking you up."

You have to have been there to see my blank, staring face. "How can you have it on for 4 full hours, " I retorted, "if you don't go to bed until 12am or 1am!?!" "And, then start tossing by 3am!?!"

Do you know the old saying, "Charity starts at home?"So does advocacy.

So, we then had a good sit-down with the other two Hosers in my house and everyone contributed to the conversation. I sat in the corner like a determined arbitrator and advocate, armed with the computer ready to spew out the evils of untreated OSA. I really didn't need it. My two other Masketeers know first hand what can happen. By the time, they finished with him, he slunked away, like a properly admonished child and the next night, I slept until 7am!

I want to really celebrate, but this is not over. Why, with the amount of Depakote he takes is he still having breakthrough seizures at night? And, if he is feeling like he can't breathe, are they exacerbating his condition or because of it?

His neurologist told me, we may never get it where he is seizure free. Why? I think it is time for a follow-up and ask some hard questions.

As for the anxiety/depression disorder, he is AWOL on that, too. Hasn't seen the therapist in months. In his defense, we have been a little tight and the therapist cost $40.00 each visit. But he has also stopped the meds.


To give him credit, he has not slipped back into the mood swings, which were surreal and dangerous to watch. But, he is also not advancing. He is battling this condition alone. Not good.

Here's where if anyone has suggestions, I am willing to listen. I still believe he has so much to offer, but is stuck. Like a broken record (remember those? No? Okay, like a scratched DVD) that can't get past a certain spot. Anything anyone thinks they can suggest, please do.

Tomorrow, I will discuss Andrew, the light of my life and I think, my greatest accomplishment.

Take care,