$15K is a lot of money. How far will it go?
Yes, objectively speaking it is a lot of money, but for treating chronic illnesses like hypoandrogenism, fibromyalgia and chronic fatigue syndrome to any significant degree it’s actually a very conservative figure.
Based on research and experience, I estimate it could last me up to a year at most when used purely for medical expenses. Realistically, it probably won’t last a full year. Numerous patients with the same illness report annual medical expenses of $20K and up. I myself previously spent about $15K in personal savings in under a year on various treatment modalities.
How will the money be used?
Here’s a rough breakdown:
• Initial patient consultation (at Pain and Fatigue Center in NYC) $875
• Various lab tests $1000
• Follow-up consultation $250
• 1 year’s supply of biosynthetic growth hormone injections $5300
• 1 year’s supply of biosynthetic testosterone injections $800
• 1 year’s supply of oral DHEA hormone $40
• 1 year’s supply of oral pregnenolone hormone $40
• 1 year’s supply of oral Vitamin D $30
• 1 year of weekly IV infusions $3600
• 1 year’s supply of duloxetine (pain medication commonly prescribed for fibromyalgia) $1200
• Contingency funds for other medications, treatment modalities or nutritional supplements that will likely be recommended by my new specialist doctor $2000
* (For air travel I have enough mileage points to use.)
TOTAL = approx. $15,000
You look pretty okay in the video. Are you really sick?
Yes, much more than I can adequately convey here without writing a book about it in the process. As for looking "okay," I have a pretty elaborate method to more or less look okay when I occasionally need to for short periods. It involves copious amounts of caffeine and pain meds as well as seclusion and rest before and after the event.
You mention a hormonal deficiency in the video. Which hormones?
DHEA, growth hormone, testosterone, cortisol and pregnenolone. A deficiency in even just one of these can cause significant symptoms. I'm also deficient in a number of nutrients like vitamin D, the B-complex vitamins and the minerals sodium, lithium and boron even though I take them all in supplement form regularly. At the opposite end, tests show I have higher-than-normal levels of copper and mercury in my blood. However, I doubt these things alone are causing the full extent of my symptoms and I suspect other causes that I hope the specialist clinic will be able to uncover.
Isn’t fibromyalgia a women’s disease?
Just as people once thought AIDS was a gay disease, this is a common misperception that will disappear as public awareness of this illness spreads.
What unhealthy lifestyle choices did you make to bring the illness upon yourself?
Not many. I don’t drink or smoke. I have a good diet. I don't stay up nights partying. And back when I could I used to work out a lot. Maybe the one thing I’m guilty of is that I tend to push myself overly hard while working, but that alone wouldn't cause this.
How long have you had this?
To be honest? Years and years. It's....a very long story. But I was dead set on keeping it secret for as long as I could. There were ups and downs but for many years I was very good at keeping it secret (at great effort) and have been able to hold down jobs and some semblance of a relatively normal life.
Slowly, gradually, it kept getting worse until eventually it became impossible to hide, most especially during the past several months. For the past two years it's been worse than it's ever been even though on some days I can still manage a couple hours of appearing kinda normal...with advance planning and some help from my friends (caffeine and painkillers).
What other symptoms do you have besides the pain and fatigue mentioned in the video?
Besides the pain and fatigue, I also have:
• Reduced immune system activity
• Cognitive impairment/memory lapses
• Frequent dizziness/lightheadedness
• Tingling in arms. legs, neck and shoulder
• Frequent shortness of breath, especially when talking or walking
• Hypoglycemic symptoms in which I need to eat high-glycemic carbohydrates every hour or my ability to think and function takes a dive and all the other symptoms here become more pronounced
• Digestive impairment
• Diminished libido
• Frequent headaches (not 100% sure if related but I bet it is)
• Increasingly worse, growing blotches of skin discoloration on face (melasma? Don't know but it started just as my CFS started getting really worse a few years ago).
• Occasional, random panic attacks with no external trigger (I had never experienced these before until the past couple of years)
• Inability to ride in a car or bus without instantly getting motion sick
• Frequent waking from sleep despite being exhausted
• Chronic depression: Hormonal deficiency often leads to neurotransmitter imbalance which is the most probable cause of this as my illness has gotten progressively worse (though being extremely isolated most days might have something to do with it as well).
Are you sure your symptoms aren’t just being caused by stress, anxiety or overwork?
Ah, the question CFS sufferers hate most. I know what acute stress and overwork over an extended period feel like and they are not even in the same realm of comparability with this. And if people knew just how excruciating these symptoms were they'd never ask a question like that.
Consider the following quotes from renowned doctors regarding Chronic Fatigue Syndrome. I do not exaggerate when I say that, as in Dr. Klimas' quote below, I too would rather have HIV than CFS. At least with the former it's quite possible nowadays to have many active, productive years:
“[A ME/CFS patient] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)
“I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.” —Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami (“Readers Ask: A Virus Linked to Chronic Fatigue Syndrome,” New York Times, Oct. 15, 2009)
“In my experience, it is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” —Dr. Daniel Peterson, ME/CFS clinician (Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, Oct. 1994; published in JCFS 1995:1:3-4:123-125)
What things have you tried to get better?
Via conventional medicine: biosynthentic hormone replacement, various kinds of drugs, weekly IV infusions, physical therapy.
Via alternative medicine: chiropractic, acupuncture, acupressure, oriental herbal medicine, juicing, every kind of food or nutritional supplement recommended in various books I’ve read as well as by my conventional doctors.
Have you really exhausted all your options?
Yes. Believe me, I HATE (hate hate hate) the fact that I’m using crowdfunding for this kind of reason and wouldn’t have done so unless it were an urgent last resort.
Are you really unable to work or are you just being lazy?
“Lazy” is not a word that anyone who knows me would ever use to describe me. I am a workaholic to the point where in order to avoid quitting my job I toughed it out far longer than I probably should have using a combination of massive caffeine intake and over-the-counter pain medication which probably made things worse.
I’ve tried repeatedly to take on formal employment again but it has only made me even sicker every time. And even though doctors recommend extended periods of deep rest for chronic fatigue syndrome, I have spent the last year working very hard on my website in an effort to provide something of value to people and to create a viable source of income for myself while staying at home. If you knew how hard it was to do this while feeling terrible the whole time I dare say you'd be in awe.
There are a lot of people out there who need help. Is your plight any more worthy than theirs?
Objectively speaking, no. But aside from the symptoms themselves, that’s where much of my frustration lies, in that I know that I am capable of using my talents to do work that benefits people but not having the physical energy to do so. In the end, I guess it just comes down to whether you can resonate with what I say here or not.
Where are these perks from?
They are from wonderful and generous artists I have worked with in the past who have offered to help. I am lucky in this sense since most illness-related campaigns usually aren't in a position to offer perks. You can support these artists, in turn, by giving their respective Facebook pages a "like" and checking them out.
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