Friday, March 14, 2014

3/14/14 - REBIF!!

REBIF!! Oh my goodness, finally.  My "doctor" has finally, after 2 weeks, gotten me Rebif, actually I have gotten it with all the pestering to the "doctor's" office I have done over the last week or so.  Rebif is an injectable MS drug.  It is scheduled for delivery next week, 2 days after my visit to my new neurologist.  He may decide that he doesn't want me to have Rebif and that's fine with me because I'm counting this as a small victory.

I used to be very timid on the phone but the 25 years with the State Police has helped me with that.  I hate when you call somewhere with a request, spell it out very clearly and then get a reply of "I don't know what you're asking me to do."  If you are already frustrated it doesn't help.  I have never seen such lousy "doctor's" service as the one that I just had.  They wouldn't return phone calls or emails.  The "doctor" didn't know that MS is painful, and still would ask "Why are you in such pain?".  Seriously?  A simple web search will tell you that MS causes pain.  This "doctor" is a neurologist that says he treats MS.

There is only one MS specialist in DE, he's in Newark, that's where I'm headed Tuesday.  Betcha he knows that MS hurts.  Isn't it sad though that we have to travel 100 miles to reach a specialist in anything.  Before I found this neurologist I was ready to pack it all up and go to Johns Hopkins.  I got my information from the MS Society of Delaware.  They and MS Lifelines have been such a help to me.  Rebif will be sending a nurse to me to teach me how to give myself these needles.  I have to take them every other day.  Side-effects aren't great but...

My dream after I retired was to sell the house and get an RV and go full-time RVing.  With MS this may have to change a bit.  I have been looking at NPS lodges.  They are expensive but oh my, can you imagine waking up with a Grand Canyon view?  It's something I'm thinking about.

Ok, I've copied this from the webpage:

Annoyed when you are typing a document and accidentally the palm of your hand brushes the touchpad, changing the position of the cursor in your document or accidentally clicking on an option. TouchFreeze is simple utility for Windows to solve this problem. It automatically disables touchpad while you are typing text.

http://code.google.com/p/touchfreeze/

It really works!  Thank God I found this before I pulled every hair out of my head.

Remember always God is Good! And...Better days are coming.





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