In June of 2004 people from all over the world discovered & began to follow the adventures of “Cindy”. This was an almost, day to day drama of Cindy Casey-Holman (written by her husband Charles “Chas” Holman) in dealing with Morgellons Disease. The time is from mid- 2004 to mid-2005; just about 1 year in her life.
“We” (morgies) lived on the edge of our seats waiting to read the next entry. The real life drama she faced going up against every professional (doctors) that she could get appointments with, was better than any TV Soap Opera or mega-blockbuster that Hollywood could produce. Morgellons patients could relate in the “first-person” sense to what was happening. Charles was there every step of the way to support his wife, Cindy, while she was dealing with all these “supposed” medical experts. Charles did not have Morgellons. He loved, respected, and stood up for & with his wife, regardless.
Sadly, Charles Holman was not able to complete the diary. On September 6, 2007, “Chas” was taken from this world. Cindy’s Diary was just the beginning of a mission that continues to this day as the Charles E. Holman Morgellons Disease Foundation.
I would encourage anyone connected with Morgellons— patients, family, friends, and professionals– to take the time to read this legacy. You will be glad you did.
Gwen “Sunny” Simmons, RN
This is a portion of what goes on in the life of someone with this disease and I will try to document as much of the reality as I can.
It’s been going on for quite awhile now, so I’ll have to back up and give you a bit of the history here…
I met Cindy in the fall of 2001 the day after she was released from the hospital following a total hip replacement. The hip is great, but about a year ago Cindy began developing some rashes in various places on her body and complained of the areas “itching like crazy”. Talked her into a visit to a Dermatologist who immediately pronounced his astute observation: Diagnoses..? Atopic Dermatitis. Sheer genius.
Countless salves, ointments, steroidal creams and anti-depressants later ( Oh, yeah, anti-depressants.. Cindy thinks they prescribe these in hopes that you’ll be so knocked-out you won’t even want to call the doctor..! ) anyway, she just wasn’t getting any better. Oh there were ‘other’ diagnoses and some very interesting ‘prescriptions’ as well. My personal favorite was: “Instead of drinking that one glass of wine in the evening, try some Chamomile tea.”
The one recurring question I kept hearing doctors ask Cindy was: “Are you under a lot of stress?” She was always quick to respond that her life “has never been better..!” Oh, did I mention that we fell in love and were recently married..? I think we’ve tried everything from Antihistamines and Acupuncture to Zen and Zoloft, all with no significant improvement.
Then, one week after our wedding ceremony, a friend called to tell us to watch a news item on KTVU (in San Francisco) that very evening. Sure enough, we saw and heard people who were experiencing the same symptoms and getting the identical “run around” by their Dermatologists. We also learned of the Morgellons Research Foundation and quickly accessed their website: http://www.morgellons.org
That’s when we found out that we were going to be treated like ‘fruitcakes’ due to the medical establishment’s view on this ‘new’ disease. We bought a ten dollar microscope and started looking at the fibrous ‘things’ on Cindy’s skin. I’ll stop right here to let you know a few things about us:
- Cindy has been a Registered Nurse for 15 years and an LPN for 10 years prior. She works in the Intensive Care Unit of a prominent San Francisco Hospital. She is well respected in her field, which consists mainly of transplant patients with heart surgery patients as her specialty. She also doubles as Charge Nurse for her unit when necessary. She has always received excellent employee evaluations and is ranked in the top ten percent of the nursing staff at her hospital. Even the most ‘god-complexed’ of the doctors in her hospital listen to this woman.
- I am a sixteen year veteran Field Operations Manager for an international provider of video products and a semi-retired musician. Things in my life are fairly well structured, i.e., when my equipment at a customer’s site is malfunctioning, it requires testing, analysis, repair and resolution. When playing music, I don’t play country licks on an Etta James song and I don’t play jazz licks on a George Jones song. The stuff of my life is structured that way.
In other words, neither one of us is anywhere near “delusional”.
Okay (back to the microscope) we began examining some of the lesions we see crop up and just like most of the victims of this insidious disease, there are these fiber–like strands in every place the itching is present.
I will caution you about this little marvel, the microscope, use of it can be addictive..! Cindy will sometimes get caught up with looking at lesions or scabs and before she realizes it hours have gone by. My advice (if this happens to you) is get out and take a walk or a drive in the country or, better yet, just carry on with your life as ‘normally’ as possible. None of us can afford to let this disease take over our existence.
Anyway, I have seen with my own eyes at 50x to 100x, the ‘critters’ and for anyone to tell me otherwise only magnifies the stupidity of that individual. Having said that, and because I agree with Cindy (and believe that I too can see these microscopic ‘bugs’) I am afflicted with something referred to as: ‘Folie a deux’, or ‘the madness of two’. So, this is now MY new disease, as I have seen the little culprits and I admit that they are real and present.
While we were on our honeymoon, in the South Caribbean, Cindy ran out of her antibiotics and the itching came back with a vengeance. After a few days of ‘toughing it out’, she decided to go see the ship’s doctor. Dr. Deryek N. Gowland, is probably the most honest doctor I have encountered in a very long time. He actually ‘looked’ at the lesions on Cindy’s arms and legs, and was seemingly shocked at the fact that this had been on-going for over a year. As he put it: “It’s unacceptable for… this… this… condition to not have been diagnosed and treated before now.” Realizing my ‘opportunity’ I immediately asked, “Do you have a 50 power scope on board?” The look on his face was as if he’d just been kicked in the chest. “Uh… no… no. We don’t have those types of lab-like facilities here.” I thought to myself, “Of course not, Jeez, for a minute there I thought you were a ‘Man of Science’…! What was I thinking?” To his credit, he did ‘observe’ a few of the lesions with his Otoscope. That’s the closest any doctor I’ve seen has come to actually looking at this situation.
He was very helpful in getting Cindy the antibiotics… and medication for the yeast infection that had ensued with the use of the antibiotics. I echoed Cindy’s request to him for the above treatment and explained that this part of it was “ruining my honeymoon..!” He looked across his desk at Cindy and replied, “Selfish sort, isn’t he..?”
Before we left his company, he told us, almost apologetically: “Look. What we, as General Practioners, do is prescribe one of four things; antihistamines, antibiotics, steroids or referrals.” ……like I said, he was honest.
DR. DENNIS TUFFANELLI
Cindy has seen many doctors over the years in an effort to find out what these ‘skin flare-ups’ were, but most of them want to point to ‘stress’ or ‘anxiety’. The current dermatologist she has been seeing, for close to two years, is Dennis Tuffanelli, who I have decided has the best gig in the entire medical profession. From what I can tell all he has to do is walk in to the exam room, look at your skin, say something like, “hmmmm”, write a prescription and in five minutes, he’s gone…!
…………I should have gone to Med School like mom wanted.
Music for Morgellons Patients
Oprah, Take On Our Cause C. Holman & C. Casey
Doctor, Doctor A song for each and every Morgie out there who’s been denied proper medical attention. C. Holman & C. Casey
Lied To To those who would lie to us about this disease. C. Holman
The Ballad of Dillon King Song written for a young Santa Cruz man who decided he’d had enough of Morgellons Disease. C. Holman
Sunshine An old Jonathon Edwards tune that somehow seems appropriate for this cause.
Fly Me To The Moon A Bart Howard song from the ’50’s (original title was ‘In Other Words’). My thanks to Lee Mounger for the violin parts.