10/24/13 7:30
Tuesday I got a call from Johns Hopkins telling me that I passed the Cortisol test. So it's OK to go off the drug Prednisone. It's now the third day of being drug free and the changes are, well, dramatic. I'm not up at 3AM like before. Today I got up at 7. Almost 9 hours and that's before the day's naps. Yesterday I got 10 1/2 hours including naps. While on the drug I was doing fine with 6 1/2 to 7 1/2 hours. A big change.
Friday, October 25, 2013
Tuesday, October 22, 2013
Drug Free?
10/22/13 10AM
Back from my early morning trip to Johns Hopkins to get blood drawn for my Cortisol test to see if it's OK to go off Prednisone completely. I've cut down from 6 tabs a day to 4 to 2 to 1 to 1/2 over last few weeks. Looking forward to being "free at last". No drugs. Just Coconut Oil, Probiotic Supplement and the other stuff: Juicing, Smoothies, Meditation, Exercise. Good healthy stuff.
Back from my early morning trip to Johns Hopkins to get blood drawn for my Cortisol test to see if it's OK to go off Prednisone completely. I've cut down from 6 tabs a day to 4 to 2 to 1 to 1/2 over last few weeks. Looking forward to being "free at last". No drugs. Just Coconut Oil, Probiotic Supplement and the other stuff: Juicing, Smoothies, Meditation, Exercise. Good healthy stuff.
Friday, October 18, 2013
A New Doc?
10/18/13 6AM
"You wouldn't believe the crap they teach in the medical schools today". Quoting his Primary Care Doc, a friend who recently had a successful hip replacement, suggests I see this Doc. I think I'll do that. I'm going to need a Primary Care Doc to access the health care system. One of my irritations with the system is how you have to go through a Doc to get a test done. My Naturopath wants me to have my PSA test redone 30 days after starting my "Juicing Diet". That day is a week from today. She thinks the PSA high reading may be due to my rare disease, PRP, and as it clears maybe the PSA reading with come down.
So I think I'll do this. See if I can sign up with this Doc. Would be nice to have a Doc I can trust and I certainly can't trust my new Johns Hopkins Primary Care Doc who was touting the Methotrexate drug. Instead of telling me how dangerous it is, she was telling me how safe it supposedly is (it is anything but!). Starts to get my blood boiling when I think about this. Should I file a complaint
"You wouldn't believe the crap they teach in the medical schools today". Quoting his Primary Care Doc, a friend who recently had a successful hip replacement, suggests I see this Doc. I think I'll do that. I'm going to need a Primary Care Doc to access the health care system. One of my irritations with the system is how you have to go through a Doc to get a test done. My Naturopath wants me to have my PSA test redone 30 days after starting my "Juicing Diet". That day is a week from today. She thinks the PSA high reading may be due to my rare disease, PRP, and as it clears maybe the PSA reading with come down.
So I think I'll do this. See if I can sign up with this Doc. Would be nice to have a Doc I can trust and I certainly can't trust my new Johns Hopkins Primary Care Doc who was touting the Methotrexate drug. Instead of telling me how dangerous it is, she was telling me how safe it supposedly is (it is anything but!). Starts to get my blood boiling when I think about this. Should I file a complaint
Wednesday, October 16, 2013
Doc Says "Never"
10/16/13 4AM
Yesterday I visited Derm Doc #1. He exclaimed that I really am better. We looked back at some of the original pictures he'd taken. They are really scary and I had, I guess, forgotten how bad I looked. Or maybe I just suppressed it at the time. I filled him in on events with the Johns Hopkins Derm Doc. How she'd pushed for my going on Methotrexate in spite of improvement in my condition which she failed to recognize and her refusal to verify my improvement by calling him and looking at his pictures. He said he would never prescribe Methotrexate to a patient who was getting better without it, given its seriously dangerous side effects, damage to the liver etc. He wondered if they are
Yesterday I visited Derm Doc #1. He exclaimed that I really am better. We looked back at some of the original pictures he'd taken. They are really scary and I had, I guess, forgotten how bad I looked. Or maybe I just suppressed it at the time. I filled him in on events with the Johns Hopkins Derm Doc. How she'd pushed for my going on Methotrexate in spite of improvement in my condition which she failed to recognize and her refusal to verify my improvement by calling him and looking at his pictures. He said he would never prescribe Methotrexate to a patient who was getting better without it, given its seriously dangerous side effects, damage to the liver etc. He wondered if they are
Sunday, October 13, 2013
A Second Chance?
10/13/13 5AM
I have just about decided to take on a new task. Straightening out Johns Hopkins. Just kidding here. I haven't added another disease, megalomania. But I am feeling that I am looking so much better and I have the answer and they don't and they should share in the knowledge and help promulgate it.
I have just about decided to take on a new task. Straightening out Johns Hopkins. Just kidding here. I haven't added another disease, megalomania. But I am feeling that I am looking so much better and I have the answer and they don't and they should share in the knowledge and help promulgate it.
Friday, October 11, 2013
What Do You Think?
10/11/13 4AM
I am thinking about yesterday's visit with my, now former, Johns Hopkins Derm Doc. I may not have made it clear, but she more or less resigned, saying I could come back at any time. That is fine with me as at this point I see nothing to gain for either of us continuing the relationship. What I would be interested in knowing is how you feel about what happened. These are the questions I have. Assuming I gave you an accurate portrayal of the conversation (I really think I did), and I realize your answer has to be based on that assumption and might otherwise change.
I am thinking about yesterday's visit with my, now former, Johns Hopkins Derm Doc. I may not have made it clear, but she more or less resigned, saying I could come back at any time. That is fine with me as at this point I see nothing to gain for either of us continuing the relationship. What I would be interested in knowing is how you feel about what happened. These are the questions I have. Assuming I gave you an accurate portrayal of the conversation (I really think I did), and I realize your answer has to be based on that assumption and might otherwise change.
Wednesday, October 9, 2013
The Doc Is Incurious
10/9/13 4AM
Yesterday I had my appointment with my John Hopkins Derm Doc. In my last visit, I had rejected her plan to start taking the drug Methotrexate and instead told her I planned to go to a wholly "natural"plan (in large part designed by my Nova Scotia Naturopath Doc). I had not told her the details of my plan or its source (the Naturopath Doc) to avoid possible non-productive discussion, telling her, instead, the broad outlines: mind/body stuff, more exercise, better diet etc. saying we could monitor and revert to her plan if mine didn't work. She accepted my proceeding this way, but made clear she did not endorse what I was doing.
Yesterday I had my appointment with my John Hopkins Derm Doc. In my last visit, I had rejected her plan to start taking the drug Methotrexate and instead told her I planned to go to a wholly "natural"plan (in large part designed by my Nova Scotia Naturopath Doc). I had not told her the details of my plan or its source (the Naturopath Doc) to avoid possible non-productive discussion, telling her, instead, the broad outlines: mind/body stuff, more exercise, better diet etc. saying we could monitor and revert to her plan if mine didn't work. She accepted my proceeding this way, but made clear she did not endorse what I was doing.
Moment of Truth
10/8/13 2:30AM
Big day today. I have an appointment with my Johns Hopkins Derm Doc. In my last visit, I told her I was going to pursue a plan other than the one she proposed. I was going to avoid going to the drug Methotrexate and scale down out of the drug Prednisone. And I was going try to cure the inflammation through diet, exercise, meditation etc. I didn't go into any detail, but emphasized the slight improvement I'd experienced and by monitoring closely we could change course to her plan if things deteriorated. She accepted my plan, although reluctantly, and made clear she did not endorse it, but said she did hope that it worked for me.
Big day today. I have an appointment with my Johns Hopkins Derm Doc. In my last visit, I told her I was going to pursue a plan other than the one she proposed. I was going to avoid going to the drug Methotrexate and scale down out of the drug Prednisone. And I was going try to cure the inflammation through diet, exercise, meditation etc. I didn't go into any detail, but emphasized the slight improvement I'd experienced and by monitoring closely we could change course to her plan if things deteriorated. She accepted my plan, although reluctantly, and made clear she did not endorse it, but said she did hope that it worked for me.
Monday, October 7, 2013
Time Off for Music
10/7/13 Monday 3:20AM
I'm groggy after 5 1/3 hours of straight sleep .. my longest stretch in over a week. A little shaky and losing weight with the juicing fast so I need to email my Naturopath Doc in Nova Scotia about tuning up the diet. More protein and fat? All I'm getting is what's in fruits and veges. But, don't want to mess with success. Body scan shows continued improvement - less redness and bumps reducing. Discussion with Johns Hopkins Derm Doc will be very interesting. She will be surprised.
I'm groggy after 5 1/3 hours of straight sleep .. my longest stretch in over a week. A little shaky and losing weight with the juicing fast so I need to email my Naturopath Doc in Nova Scotia about tuning up the diet. More protein and fat? All I'm getting is what's in fruits and veges. But, don't want to mess with success. Body scan shows continued improvement - less redness and bumps reducing. Discussion with Johns Hopkins Derm Doc will be very interesting. She will be surprised.
Sunday, October 6, 2013
Doc Says "Dramatic Improvement !"
"Dramatic Improvement. The pictures don't Lie!" says Derm Doc #1 whom I've had for years and retained while I've added John Hopkins Derm Doc #2. He has taken pictures of my torso on my visits to him and the new ones taken and reviewed at my appointment Friday confirm I am curing, and rapidly. Far more rapidly than I had expected or even hoped.
Saturday, October 5, 2013
Extending Life With A New Way to Sleep
9/4/13 2:30AM
I've discovered a new way to sleep which I want to share with you. Before the onset of this rare medical disease, I'd been sleeping really well, 8-9 hrs a night. But, lately, I've developed some new patterns which are very exciting. They give me a better result: more alertness during wake time, with less time sleeping so more time available for live action. Right now, with my medical adventure in full swing, I'm eager to be up and doing all the things I want to do for which, as you know, there is never enough time. Years ago, I read a book by a Cornell professor who specialized in sleep and said that 10 hours was the ideal. Most of what you read says 8 is best with more or less for different people. The average I read in the US is 6-8 hours. They say Margaret Thatcher got 4 hours, Leonardo Da Vinci 1.5-2hrs, Thomas Jefferson 2hrs, Thomas Edison 5hrs, and Isaac Newton 3-4hrs.
I've discovered a new way to sleep which I want to share with you. Before the onset of this rare medical disease, I'd been sleeping really well, 8-9 hrs a night. But, lately, I've developed some new patterns which are very exciting. They give me a better result: more alertness during wake time, with less time sleeping so more time available for live action. Right now, with my medical adventure in full swing, I'm eager to be up and doing all the things I want to do for which, as you know, there is never enough time. Years ago, I read a book by a Cornell professor who specialized in sleep and said that 10 hours was the ideal. Most of what you read says 8 is best with more or less for different people. The average I read in the US is 6-8 hours. They say Margaret Thatcher got 4 hours, Leonardo Da Vinci 1.5-2hrs, Thomas Jefferson 2hrs, Thomas Edison 5hrs, and Isaac Newton 3-4hrs.
Tuesday, October 1, 2013
How Can You Help?
How can you help? You already are. By reading this Blog. Knowing that you may find this interesting, informative, entertaining, any or all of these makes it all worthwhile. More importantly, the thought that together in a small or large way we may be able to help others. Please email this link for the blog to your friends and anyone else you think could benefit!
Subscribe to:
Posts (Atom)