Tuesday, September 6, 2011

My goodness it's been a long time....

I can't believe I haven't been here since Dad passed.  It's been almost 5 months.  Mom is adjusting well. She has her moments as we all do. But to know he is in Heaven with the Saviour is the best knowledge and hope there is.
What have I been doing?  Hmmm I've been busy for sure. I would have thought after retiring 5 years ago life would be simpler. I guess it is in that I don't have a time clock to punch in and out every day. But it is busy and many hats to wear.
I am now getting the full dose of Benlysta for my infusion each month. The drug was approved by the FDA this last Spring.  That is great news. And a gift from God. I don't have to pay for it until the study is complete in 2016.  That too is a gift from God. The drug is $1000 per dose and 1 dose per four weeks. If insurance pays, it is likely to only pay at 60%.  The only bad thing I have noticed about this drug is that it only lasts 3 weeks and can only be taken every 4 weeks. That leaves 1 week of problems.  I usually have to take twice as many pain meds during that week.  And twice as many naps! 
I have had a sleep study recently as well. Almost a sleep study.  We didn't quite get to finish it. So we are waiting for the insurance company to approve the rest of the tests. I know I have sleep apnea, but they are testing for other disorders as well. It appears I also have hypnogogic hallucinations that are a sleep disorder.  And RLS.  But I haven't seen the report yet.

The neurologist, also new, said I have mild neuropathy in my big toes too. Just something else to add to the ever growing list.
We do get to take a vacation this month.  YEAH!  The first in 6 years.  It will be a working vacation, but I think we'll have a great time.  We're looking forward to getting away.  Hopefully the east coast hasn't washed out to sea by the time we get there. Our daughter is trying to figure a way to hide in the trunk of the car until it is too late to turn back. However, I think we would notice an extra passenger.  We are taking Mom part way.  We will be dropping her in OH so she can visit friends and family.
I think that will have to do for tonight.  See you all later!

3 comments:

chocolatedogstudio said...

Chronic pain is hard to live with. I hope that the vacation will help you relax and get the rest your body needs.

myeuropeantouch said...

Enjoy your working vacation, they can be fun too...♥
Monika

Angels and Everlastings said...

Thanks for sharing --