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.


Am I being premature here?  True, I am not all cured, but my body scan showed so well today with reduced redness, bumps are getting smaller and disappearing.  The one area that is problematic is hands and feet. Hands are looking better though. And feet too. Feet are still cardboard, leather-like but the redness is all but gone except on the outer sides.  Both hands and feet still get several times a day Vaseline application, without which they wouldn't function well. I wouldn't be able to walk.  But the number of applications necessary is reducing.

I am sleeping better. More regularly.  The first sleep of the night is  5 to 5 1/2 hours, regardless of  going to bed at different times 10-12PM.  I wake up refreshed ready to get up, no lying awake in bed as I am not stewing and eager to get up and do. I take around 4 naps per day. 10 minutes to an hour.  And I am getting along fine with less sleep. Around 6 to 71/2 hours vs 9 before all this.  So that's a nice plus.  With the naps keeping me refreshed, my waking hours are more productive.

Two days ago I added Protein Powder Smoothies to my diet as suggested by my Nova Scotia Naturopath Doc. Protein Powder, Avocado and Banana.   I am building strength, muscle and fat. As I am underweight to begin with that could have been a concern as the weight loss has been quite visible.  And what a thrill to taste and fill up with a smoothy.  Ok it isn't a nice tender sizzling steak, but hey, from where I'm coming?

So thanks to all of you who have responded and are helping me to decide what to do next.  While none of you said that the Derm Doc did the "right thing", a number said they were not surprised based on their experiences.  Some suggested she was influenced by Big Pharma, perhaps monetarily to push the drug Methotrexate.  As far as the loss of oversight from her "resigning"., some said forget about her and move on and that I am better off without her.  Others expressed the thought that it is a loss to me to not have Johns Hopkins in the loop monitoring my progress.   As for the issue of taking this up further with Johns Hopkins some of you said to focus on my recovery and not spend time on that.  Others said I have a, well, moral obligation to pursue this and share my experience with Johns Hopkins so others might benefit who deal with them.

So what am I going to do.  Well at this point I am still deciding but subject to further confirmation of what is beginning to look like a rapid recovery (less than 3 months for a typical 3 yr or more disease) in the days ahead I plan to pursue this with Johns Hopkins.  It occurs to me that the experience with this Derm Doc may have been atypical of treatment by other Docs there although, I was seriously misinformed by both her and the Primary Care Doc as well.  I am curious to learn whether the institution itself is incurious. Are they just selling existing products or are they interested in learning about better products.  Do they see themselves as a distribution arm for Big Pharma or do they see their  focus as what is best for the patient?  Admittedly. that's a sharp question, but this Doc's behavior makes the question all too easy to ask IMHO..

So as some of you suggested,  I plan to try to take this up with the head of Dermatology at Johns Hopkins.  I want to make this a productive exercise for all involved and not have this turn into a argument or fight.  What I plan to do is try to get a simple message through that I believe I know of a cure for this rare disease, for which there was, heretofore, no known cure in Conventional Medicine.  I accept that my Derm Doc is not interested in following my case.  But, I would like to know if any other Doc in the Department of Dermatology would be interested.  My reason for asking is that I believe I could benefit from such monitoring and others could benefit from learning of a treatment plan that works.  The "Others" being both patients of Johns Hopkins and the institution itself.  I've done all the heavy lifting for them. With a detailed written treatment plan and case study, with this Blog.  I'm handing them a priceless new product on a silver platter -- for free!

Why not?  Well I don't need any stress at this point in my life. But, if I handle this right there shouldn't be any and I'll get a great feeling out of it.  The good feeling reward of helping others which, in turn will be helpful to my recovery.  Sounds like a win-win to me. Worst case I'll find out they don't care. If so, that's worth knowing for future reference and letting others know what to expect to from the world's top ranked hospital.  Knowledge is power.

So, I say, let's give Johns Hopkins a second chance to do the "right thing".
Agree?  Please let me know  and Thanks for reading!