Kaiser/CDC Consent forms/Rights

[chocket]

Hi Folks,
I copied off the consent forms that CDC/Kaiser sent to me along with the Intro page and Patients Bill of Rights.

Go to:
http://www.carrieschoices.com/consent.ppt

It is in a powerpoint format, so you will need to download. Then there hyperlinks to each of the documents.

Let me know how it goes.
Carrie/chocket

p.s. Wish me luck tomorrow!

[jonsi]

Hi Carrie,

I will try to download the powerpoint format...it might be another later night!

Good luck tomorrow, you are on my phone calendar so I don't forget about you in the am.

Come home safe and healthy tomorrow night so you can let us know how it went. You are doing so much for all us "Morgies" and we are very lucky to have you on board here.

Thank you "chocket"!

In the white light,
~jonsi

[Jo]

Thanks for posting that Carrie, very interesting.

We will be thinking of you indeed. You are our ambassador of morg ;o)

Jo xxx

[Morgan]

Wow chocket. Thanks for posting this. I'm sensing some non-ethical questions on these forms. Would they take hair samples for drugs for ANY other study of a potential disease?

I also noticed they are checking for STD's. That seems odd and crossing the privacy line somehow in the context of what they are studying.

hmmmm...

Greatest of luck sweetheart. We are ALL rooting for you. You are our only window into wtf is going on. Thank you, thank you, thank you!!!!!

It appears they will be using Quest Diagnostics for the blood work.

I actually checked for parasitic infections and there seemed to be only one worm type parasitic test unless they are all listed individually. Ahhh, yes they are. Filaria is listed, if only they will CHECK IT.
P.S. I wonder if it is possible for you to receive a written report of the findings of your individual case at the end of your procedure. After all it is your health information which is being investigated. Then you have documentation if it is ever needed.

Morgan

[hilly]

Yes, as Morgan says we're all rooting for you and can't wait to hear what happens. Keep strong... hope you got my pm.... thinking of you a lot and hoping for the best... wish we could all come with you ! lol... Hilly x

[chocket]

Hi Folks,
I made it through the day:

Of course I didn't get a wink of sleep. I got up at 5:30, was out of the house at 6:00 to get to my appointment in Oakland by 7:30am. Due to traffic, I arrived 7:55

• Joanna, quickly escorted me into a conference room where we signed the papers. It was there that I gave my agreement to allow them to keep in blood work, tissue, hair...for future sampling if needed.
• Next My blood pressure was taken
• Next my blood,urineand hair samples were taken.I learned I was the 22nd patient and primarily the patients in the study had been women so far.

The nurses,staff and doctors seemed very compassionate and supportive.

• Next chow time!And more forms.Info on prescriptions being taken and areas of outbreaks, also repetitive questions pertaining to alchol, suicide, psychotic behavior.
• I was taken into an exam room, and given a gown.The Internist was an elderly doctor, who essentially who just did a general exam. Nothing to write home about.
• Melissa took over from Joanna and came to escort me to the PHOTOGRAPHER!, When I get nervous, I tend to crack jokes, and try to create humor during those times. I marched right into the room, and pointed my finger at the photographer, and told him he owed me 'dinner and cocktails' with a smile. It broke the ice.
• There were several poses because he photographed every inch of my body. Fortunately, Melissa stayed in the room with me. For part of the photography, I could drape the gown around various areas. But eventually the Full Monty had to be revealed.
• I didn't have too much time being embarrassed because, he was having me stand in certain poses with arms out, in, up, down, sideways, legs posed as if walking from the side view. Very robotic poses. Then came the turn around for my whole backside to be revealed. The front was bad enough, but something about turning around so your whole backside is revealed.Fortunately, he was quick, and that part was over.
• I survived
• Next they let me get dressed. Yeah! Behind a screen!
• I was taken back to the waiting room and told to wait. In walked the Dermatologist arriving with his 10 speed bike, just arriving to work! Remember, We are on the 8th floor in downtown Oakland.
• I'm escorted into the exam room, and told to disrobe again. The Derm was going to examine every inch of me.
• Ok off with the clothes, but this time, I got 2 dressing gowns to layer, so that the garments wouldn't part and reveal my most beautiful, bountious (is that a word?) body!
• The doctor was a nice sort of doctor, and gentle. He looked at every imperfection on my face,neck,shoulders, arms, legs...I stopped him there, given that I did not have lesions anywhere but my face (which were currently in the dormant stage). He asked if he needed to do a genital exam, and I quickly said no, everything was just dandy there.
• He did look at my back, and exclaimed, 'Well I found some tattoos" He obviously was practicing his humor, which helped break the ice. I remarked, 'Oh my god, I completely forgot I had those. Since they are on the back, I never see them" I have a large lioness lying in grass on my right shoulder blade, and a Libra Scale in the center of my back. (The tattoss were during my midlife crises phase when I turned 40) I soon got over that phase.
• Next I sat and talked with him about biopsies. He decided he wasn't going to take any biopsies, since mine would be primarily from the face, and he had opted not to do biopsies from faces, due to scarring. I had him took at the white heads just under the skin of my most previous lesions that had lasted from September to May. His comment was that they were a "pruitic cyst" I think that is what he said.
• I told him, that those were not cysts. That if I accidentally broke the skin where they were, it would disturb the 'critter', and would create a ulcer.lesion. That pus did not come from those white-head looking things.
• It seemed like he was pacifing me, in a condescending way, and asked me if I didn't "think they were cysts, what did I think they were."So I whipped out my Scientific language skills, and applied the Scientific Method strategy, in explaining what I believed they were. I explained that we are entering into a whole new domain of new emerging diseases, and with companies like Monsanto with bio-engineering taking place, anything was possible.
• I told him that I lived in Sonoma County where they were treating the Grapevines with a bioengineered fungus, to fight the bad fungus, which was killing the vineyards.
• He then asked me' how would we test to find out what this thing was' because I mentioned the Argobacterium. I responded, well, you run a test to look for Argobacterium, if its there then fine, if its not, then it was a process of elimination, which ultimately is what this whole thing comes down to. I also instructed him to view my video on youtube which showed this hair-like thing coming out of my skin and moving around.
• He asked me 'what I thought it was', I looked at him and said,'well its obviously something alive, because my skin pores, weren't making that thing do the 'hula', and obviously if it was attached to something under the skin, then it would be some oranism, parasite. Because,as I told him, the critter was not living sybiotically with me, so therefore I considered it a parasite. What type of parasite, was to be determined.
• By this time, he seemed to have relaxed his stance, and was actually listening to me. I said 'come on doc, admit it, don't you want to get a peek at these fibers, everyone is talking about. I told him how the clear, tube, fiber optic fiber's consistency was as tough as an animal whisker.
• He again asked me what I thought made those fibers. I responded that I felt it might be an organism that was able to make some type of diatomacious or cretacious shell, similar to barnicles, corral...etc. And that possible the bright blue and red fibers could be a biproduct.
• I told him that my microscope that could take photos and video, only went to 400x, and that I could never see what critter the fiber/tube attached to. I did mention, that I found a nematode type of organism, gelatinous, with a head, body and tail that corkscrewed around a red fiber, anchoring itself to the fiber. I also told the Doctor, that I found another video on youtube, that had the same exact organism, I had found on me. He took down my youtube address.
• After he left, the nurse revealed some information to me! She told me that doctors will not treat unexplained illnesses, because they don't get paid. So either they name it something known, or they will not treat it at all. I have to check with nurses on the board here, but I suspect that if there isn't an IC9 code for the ailment, than insurance companies cannot be billed, therefore, no pay! Also, she told me that she was going to get the results from my biopsy I had done last week with my regular Derm to add to the study. She felt it was important to add it because, and this is how she put it. 'you are the most articulate patient we have had come in here to explain this phenomenon.'
• I felt great. I was actually representing our Morgie Community in a way that was actually drawing some respect and consideration. I was succeeding in my job as the token 'patient' for all of the Morgy sufferers who didn't have the mis-fortune of being a Kaiser patient.
• After getting dressed, they fed me lunch, and I waited for the Neuro-Psychologist. Out walks a woman, who couldn't be older than my oldest daughter. She was very kind, but I knew I could run circles around this gal.She took me into a conference room, where we spent 1 1/2 hours doing brain twister tests. Fortunately, with my brain fog, and me constantly asking the students 'where was I?' I had been practicing on the internet at various IQ sites. I passed with flying colors, which was good and bad. It showed I didn't have any neurological brain disfunction, which was good, But the test was being done on my up day, so it wasn't testing me at a time when I was in a two week chronic fatigue state. So I didn't quite prove that I was suffereing brain wise. I instead used that time, to recruit another ear, and explain my story, and described the symptoms. I believe the conversation came up when she asked me how long I had been researching Morgellons. I was honest and told her that due to my profession, I didnt get involved with naming it Morgellons, because it had not been recognized as a disease, and was still being classified as a DOP. But after CDC/Kaiser made their announcement, I did my own research. I repeated my story to her that I told thd Derm.
• She sat back and crossed her arms. She thanked me for explaining the disease in a way that helped her understand more about it and what people were experiencing, and that it was the first time she had heard it in a way that enlightened her more about the disease.
• Wow! Another high five! Yeah, another accomplishement in spreading the word.
• By now, it was 2:00. I was taken into a small room with Melissa for the final papework. Here she gave me an answer key, similar to the ones we used in school, multiple choice ranging from Never, sometimes, often to always. She read the questions aloud, while I followed along, and filled in the bubble that fit my answer correctly. Many of the questions were asked over and over, but worded differently. Key questions were about self esteem, drug use, alcohol use, hearing voices, feeling paranoid, sleep deprivation, suicide....essentially it was a test to determine if I was exhibiting in Psychotic, Paranoia, Personality Disorder syndromes, or drug/alchol use, and suicidal thoughts.Basically was well adjusted or a nutcase. About 400 questions. whew! It was over!

If anyone has any questions, please feel free to add your comments.
Carrie/Chocket

[Jo]

Carrie, quite simply

What a thing to go through!! You did brilliantly.

Cant believe they made you undress twice!!! What a shocker.

Did they give any indication of how long it would take to get some results?
Love and BIG respect to you

Jo xxx

[carla]

Thanks for all your efforts Carrie.
Your an angel

carla xxx

[hilly]

Carrie... WOW.... you really told them... I am full of admiration at how you kept your cool for so long and managed to 'sock it to them' in such a sensible and civilized way. You really impressed them and have done SO much for our cause.... Well well done. You scored on every test..fantastic....
Hilly x

[Morgan]

Great job Chockett. You are a real trooper. We appreciate all that you've done.

Thanks a million.


Morgan