Tuesday, November 26, 2013

Is Happiness a Choice?

Sunday 11/24/2013 7PM

Get Out!   That's what I decided to do and I think it worked.  In my last post I talked about the Mind/Body connection and how important it was to be happy in order to heal. Scientific evidence demonstrates that happy people are healthier and heal better than unhappy people. This rare disease PRP was starting to get to me. (Hey look. I just used the past tense, so I must be making progress with my attitude). 

Thursday, November 21, 2013

Night Plane to Nova Scotia

Wednesday Nov 20, 2013 9:30 PM

Yesterday, it was just after midnight, dark and rainy with the streets almost deserted as my daughter and I drove from the airport in Halifax, Nova Scotia to the B&B downtown where we were to spend the night, before my appointment with my Naturopath Doc. Fortunately, the appointment was much later in the morning, just before noon.  Once we arrived at the B&B, being over stimulated from the flights from the US, it did take a while to get to sleep, but I did get 6 or 7 hours and so was alert and eager to go the next morning.

The first thing that struck when we arrived at the Doc's office was that it was sunny and cheerful, unlike conventional Docs' offices which, in my recent experience have all been dark and gloomy.

Tuesday, November 12, 2013

A Painful Detour

11/10/13  7:30 PM

A week ago after going off the juice fast and eating solid food I made a dumb mistake. Even tho I really knew better.  I didn't slowly phase from liquid to solid. Well that, or something, wreaked havoc with my digestive system. Let me just say it was both diarrhea and constipation. Kind of a combination. Certainly, unique in my experience.   I'll spare you the details.  Painful.  Debilitating.

Saturday, November 2, 2013

What Next?

11/2/13 5:30AM
I'm up early while it's still dark, for the first time in over a week.  Since going off Prednisone completely, a week and a half ago, things have really changed.  And quickly.  I've gone from sleeping 7 1/2 hours a night with Prednisone to around 11 hours a night without the drug.  I had no idea what an effect the drug was having on me.  Now I know. And my positive attitude was, I'm afraid, more influenced by the drug than I realized.

Friday, October 25, 2013

Drug Free and Groggy

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.  

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.

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

Wednesday, October 16, 2013

Doc Says "Never"

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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

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.

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.

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.

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.

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.

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.

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!

Monday, September 30, 2013

Bright Shining Yellow Pinpoints of Light

Am I really getting better?  Did a mirror check this AM.  Looks better to me. Less redness. The bumps that come with this rare medical disease seem to be getting smaller. Definitely not worse and at this point I am happy to be just stable. It would even be OK if I experienced a slight decline since I have cut back on the Prednisone drug and am on this rigorous juicing diet - nothing but fruit and vege fluids. and time should be allowed for this to kick in . Actually I have not had any Protein in 4, now going on 5 days except for the limited amount in the veges in my juice .  I don't recommend that and

Sunday, September 29, 2013

My Killer App


Time flies.  I'm on day 4 of my new treatment plan.  No you didn't miss any posts.  The last dealt with the first day. So we'll catch up with this one.  It's early morning 6:30 AM and I just
stood up from my computer here to go get a snack.  Whoops. Can't do that.  Why?  I am on a "juice fast". What's that. Well that's where you consume nothing but juice. In addition, I'm consuming vegetable broth and will be drinking herbal teas, but haven't gotten to that yet.  I call this juice a "Killer App" because it is so powerful and will, I expect (and hope), not only cure my mysterious rare disease, but help me achieve a new level of health, even beyond that I enjoyed before this disease suddenly struck without warning.  Here's how it works.  You buy a juicer.  Not a blender. Blenders

Saturday, September 28, 2013

Choose the Alternative?


9/26/13
I'm on my new plan, recommended by my Nova Scotia Naturopath Doc who helped me years ago deal with the Prostate Cancer issue (See I Bet My Life on Alternative Medicine).  I am going to treat  this sudden and mysterious  rare disease very aggressively and proactively, but Naturally. Let me tell you first why and then how. As for the why.  I am an healthy: 76 year  old guy, living a very happy and fortunate life style, physically active, lots of interests, great family and friends, good diet, lots of fresh fruits and vegetables, exercise-gym and tennis, sleep 9 hours a night (until lately), don't smoke, do drink but very little.  Then this comes out of the blue.  So you say a lot of good all that healthy

Thursday, September 26, 2013

Day of Decision and Surprise

9/24/13
Big day today. I have an appointment with Johns Hopkins Derm Doc.  I see (on their great site where I can look up all my stuff) that it's scheduled for just 15 minutes (previous appointments have been 1/2 hour).  I assume that, in her mind, the visit will be quick.  She will take a look at how I am (she hasn't heard from me, so she will expect no surprises) and then go over the treatment plan which is to go onto Methotrexate (MTX), the next drug, and phase out Prednisone, the current drug, over time.  We've already discussed this.  So nothing new will be expected by her.  Except, what she doesn't know.  My plan is quite different: to go off all prescription drugs - (Prednisone - pills  and Triamcinolone -  steroid cream). I want to  go all Natural. So this will be interesting.  My objective is

Wednesday, September 25, 2013

If Only I'd Known

If only I'd known helping others could be such a high.  I'd read that helping others made you feel really good and was good for your health, but I'd never really experienced it.  Maybe simply because I hadn't tried it? I had thought I ought to do some volunteer work, but hadn't .. just too selfish I guess .. or maybe ..well who knows .. I  don't want to indulge myself in too much self criticism - Ha!   But

Monday, September 23, 2013

Don't Tell Me You're Sorry

I'm not sorry so don't tell me you are.  Or you'll make me feel guilty for having told you about my disease.  I feel really good as you know if you're reading my blog. Why?  Well, this is a worthwhile mission and I'm in a position to carry it out successfully.  I see progress with what I'm doing and have

Sunday, September 22, 2013

Health Care is Broken

   9/21/13
You already know that. So what's the big deal?  Talked today with a guy who's graduating with a Public Health Degree from a very  prestigious local University. Asked him how he liked his studies .. kinda shook his head, no apparent enthusiasm for what he's studying .. spoke about how bad the system is Big Pharma, Insurance Companies etc.  This guy is going on to study Pediatric Medicine.  That's great. What's awful is before he gets to med school, he's spent 4 years of his life and accumulated $150K in debt .. and for what? .. to learn about an inefficient,  politically based, blouted wasteful system.  A system overripe for creative destruction.  And now I'm real excited about some ideas stemming from these experiences that I think could make a real, maybe huge, difference. And even more exciting? I think I can launch these ideas and get them implemented.  More on this later.

Saturday, September 21, 2013

My Body is a World Class Lab


I'm conducting ground breaking research on a rare skin disease - (PRP). And I have a great lab - My Body.  It is immediately accessible -24/7...  it reports test results instantly-(no bureaucratic system or Doc filtering delays). . and I have total control in administering, viewing and interpreting results.  Currently, I'm performing tests with Coconut Oil, Vaseline, Acidophilus, Triamcinolone steroid cream, and Prednisone.  The left side of my body excluding head, hands and feet is covered in Coconut Oil and the right side in Triamcinolone Steroid Creme.  Head (hair and face) have Coconut Oil. Hands  have Vaseline.  Feet currently have coconut oil covered with Vaseline.

Thursday, September 19, 2013

I crack up.

  9/19/13
 Yesterday I noticed soles of my feet are cracking and flaking and have gotten a bit tender.  Uh oh --Is this going to stop me walking?  Best exercise of all they say is walking 30 minutes a day we should all do.  I  do a lot of this.  But then I noticed that my hands which started peeling a week ago are getting much better.  Why? Vaseline.. which I'm liberally applying.  So now I'm hoping this will keep

Wednesday, September 18, 2013

I Bet My Life on Alternative Medicine

9/18/13
Rejecting Conventional Medicine, I bet my life on Alternative Medicine and am here to tell the tale 8 years later. In April 2005 I was diagnosed with prostrate cancer and began a journey which had me seeking answers in Baltimore (my home town), Phoenix, Arizona, New York State, New York City, Portland-Maine and Nova Scotia, Canada.  It started with a somewhat elevated PSA (6) resulting in me getting a biopsy which indicated I had prostrate cancer. The indications were moderate but still

Tuesday, September 17, 2013

9/17/13
My negative test result is positive?  I get an email from John Hopkins that I have new test results.  Log in to the Hopkin's great system where I can see my test results, send and receive messages, see appointments etc. In encounters in previous years with hospitals including Hopkins I have always had to yell at them to get my results in a timely way .. the usual bureaucratic confusion and wanting to have the doc look at them first. This time I got my blood test results the very next day (except for PSA)  so this is a major improvement in the health system.  I log in and see that this new test result

Monday, September 16, 2013

9/16/13
Woke up several times in night with terrific itching. Finally got up and reapplied ointment. Angst about Blog. Decided for time being to restrict to family and close friends and exclude docs. Major objective of Blog should be to promote healing which will be made more difficult if time spent on how to say things diplomatically. And time spent being concerned with viewers reactions can inhibit

Sunday, September 15, 2013

Should I do a Blog?

9/15/13
Had dinner with friend Russ last night..mentioned I'm thinking of doing a blog .. he urges me to do it .. could really help others with my newly discovered rare disease as I journey thru the medical system and seek recovery .. I am resistant .. do I have time for this .. a lot of research to do .. and I have other things I want to do in my life ... not become consumed with this disease. Wake up at 4 AM. Maybe