Tuesday, June 08, 2010

This and that....

I'm in another crash. Yes, my regular readers have heard it before. Throat raw. Muscles limp. I have the good fortune to have an appointment, finally, down at Nancy Klimas' clinic at the U. of Miami Medical School this Thursday after 6 months on the waiting list. Since it's at the Medical School and not at her new pay clinic Medicare will cover an hour and a half evaluation and any follow up visit.

I know there's no magic bullet, but maybe hope that something might help is good medicine right now.

I've not had the energy to respond on blogs in a while now. I'll get back to it when I can.

And, on the subject I wrote about earlier...social sites such as facebook or myspace taking readers away from the blogs, I just got my stats for this site and my website recently. Lowest numbers on both since I started them years ago. No, I've not been posting as often, but I went through periods in the past when I didn't, either, and the numbers stayed up there. I use this blog just for meanderings such as this now or fun things I'd like to keep as long as blogger.com stays open.



Anonymous said...

Pris ~

Sorry about the dang crash! Your getting that doctor's appointment after all your years with this dd is awesome. Maybe I should not give up trying to get in to see Dr. Peterson in Nevada. I applied in 2006, was told it was a 6 mo. to a year wait, and have never heard from them. I have sent many letters of inquiry too. Sad, huh.

Pris said...

Hi Judy,
Until they hired another M.D. who'll be using Kimas' protocol there at the hospital and she opened the private center (she'll be both places) to take people who could afford to pay, the waiting list was anywhere from 1 to 3 years. Don't give up. Now that he's left the institute and not doing the extra research maybe you'll have a better chance. May be a good time for one more letter, too.

Good luck!

cfswarrior said...

I'm sorry to hear about the crash. They are so discouraging!

That's exciting that you will be able to go to Dr. Klimas's clinic. I watched her latest video over the weekend. She seems to have a very grounded approach to treatment as well as doing really good research too.

I'll look forward to reading about your visit there (should you decide to post about it).

Pris said...

Crashes are really hard. Since I have no voice for this appointment I've waited for now for months, I sat up and typed two pages of notes about things I wanted them to know, in addition to the big form they sent for me to fill out and bring, with any pertinent records. My brain is fried right now so I just hope I can get through this and remember what they say.

Jim K. said...

Wish there were some kind of
environment for relief, but it's
probably mostly internal now.
The "proteomics" they are doing
after genomics wasn't a magic
spell might yield some answers..
wishing you luck

Laurel said...

So sorry to hear about your crash. :( They are so frustrating and discouraging! Wishing you improvements and much success with Dr. Klimas. How exciting you are getting to see her! Hope she is able to get you feeling better soon!

Pris said...

Thanks, Jim....still hoping more answers are found.

Laurel, I'm seeing a doctor at her clinic there who went to med school with her and has seen ME/CFS patients there in Miami before joining her clinic. She's good and right up to date with what Dr Klimas is doing. And thanks. I'll post any suggestions that might apply to anyone after I go for my followup in 5 weeks. This was their information gathering and blood letting visit:-)

mouse said...

Pris, I wish you well, including good results from the doctor(s). Facebook has many uses, but it does not lend itself to those who like to write volumes. It is kind of the internets' equivalent of the cell phone. You walk down the street with your mind and ear connected to another space and are completely oblivious to the world you are walking through. I hope the blogoshere stays alive for a long time to come.

Pris said...

Mouse, I agree. I post things here that I would never bother to put on facebook where, yes, a fast read is the key. I also like the blog just for me...my thoughts, photos, music, art and books I like....and best of all, not 100 people bugging me:-)