My name is Frank Haywood, and while I’m VERY ordinary looking, short at 5’4″ and not much to look at really, I have an intelligent brain and a warm heart, both part of the great genetic lottery I think. I live in Solihull in England.
So this is me a year or so before my skin went crazy eddy on me. What a handsome bloke I was. I’ll post other pictures on here of me at my worst when my skin is a little better and I can emotionally accept that the newer ones are also me. But I need to get past that nastiness a little before I can look back on it. Vanity.
Day to day you’ll find me working at home on the internet, quite often on something new and enjoying it most of the time. I’ve been working on a project for the last 8 months that I’ve no idea if it will pan out and actually bring some money in to pay the bills, but I had to do it. I can’t see why it shouldn’t, and I have a knack. More on that another time.
If you knocked on my front door, then 90% of the time you’re likely to find me standing there bare foot and in t-shirt and shorts. And if I’m dressed or out and about, then most of that time I’ll be wearing one of my many “tablecloth” open-knecked shirts and a pair of jeans, and wearing thick socks and a nice comfy pair of suede shoes or boots.
I’ve done some stuff in my life that my very ordinary looking appearance doesn’t give away. Some of the things that I’m pleased I did was become the Data Manager for the 1993 model release of Range Rover. I was one of the few people to be involved in the project for the whole seven years from the first Product Features Letter (or whatever it was called) and Business Proposal right through design and prototype and into Production. I was involved in lots of other things during that time and I know that some of the work I did saved Land Rover more than £100k every year from when I implemented it because I was told that directly by the man responsible. Don’t ask me right now what that work was because it was 25+ years ago, but I remember the feeling when I got the news. Later I joined the IT Department and then later again the Logistics team as Data Manager for the newer model Range Rover in the late 1990s / early 2000s and was regularly travelling backwards and forwards to BMW in Munich to make plans with my counterparts there. It was interesting but also the beginning of the end for me at Land Rover.
After I left I imported chemical glow sticks from China and sold them on eBay, and that was when I first learned how to build web sites and sold them on there too. I’ll never forget the feeling when I first imported my own brand of £3,000 worth of glow sticks at a total cost of approx £1.50 / tube of 100 delivered to me, and which I sold for £12.50 on eBay and my web site. I sold all approx 150,000 (can’t quite remember?) glow sticks in six weeks from 1st October to mid-November. I was exhausted from packing and shipping as I was only getting about 3-4 hours sleep a day, but when it was over we’d turned £3,000 into nearly £18,000. At that point I knew that no matter what, I should rely on myself and be confident in what I could do.
After that I got into digital products of how-tos and software because it was all downloadable and there was no stock to keep and ship, it could all be handled automatically. Perfect product really. To do that I sourced programmers in the Philippines and got them to create my ideas. The Filipino standard of living costs about 1/10th of ours so I could afford to my pay my lead programmer USD $3.00/hour (about £2.00 at the time) which is a fantastic amount of money in the Philippines where most people earn less than £5/day. I gradually raised her payments to $5.00/hour as I sold more software. I think she enjoyed her time with me before needing to go work in a programming team with other people (for a lot less pay) – I was always very nice to her and appreciative of all she did. And let’s not forget that at one point, when the kids were young, I also decided it was a good idea to mow a few lawns as well to bring some extra money in to give them a good childhood and so my wife could stay at home. Whatever it takes has always been my raison d’etre even though I couldn’t have put that into words a few years ago, but now I’m older I see myself for what I can do and not how I look.
That’s a quick potted history of at least some of my working life.
tl;dr – I don’t look like much, but I have a brain and determination. And I love my family.
I have an overdeveloped sense of humour. That’s my own description. I find almost everything funny one way or another and I know that this can cause people to get annoyed or concerned with me because they think I don’t understand the situation. I do. I’m not a giggling ninny, but many things amuse me. And if some people don’t like it, that’s their head problem not mine.
I am not politically correct in any way and I laugh in the faces of people who are, and who actually think they can change human nature with words and laws. It’s just foolish to put yourself up against several million years of evolution and 100,000 years of man’s existence on this planet, and think you can win.
I prefer to get along with people, but we can do it their way if they want.
So, I’ve done some things in my life. You might (probably won’t) recognise my name as I’ve sold software to customers all over the world, and at one point I maintained a profitable mailing list of tens of thousands of customers, but I’ve had some things happen in the last few years that’s knocked the stuffing out of me a bit, like life does to us from time to time and that’s behind me for now, but I just *might* ressurect it all. “We’ll see.” One of my favourite phrases.
I’m 57 as I write this, and was born in late 1959, so a 60’s child really, and as a young boy grew up without any of the wonderful amazing stuff we have now, all built around that pinnacle of social technology, the internet.
I learned to read when I was very young, 2-3 years old and have been reading ever since. When I was a child during the 60s, pretty much all there was to do indoors was read. There were only 3 black and white TV channels (which were the miraculous marvel of their time) and childrens TV was on for about 90 minutes per day. You had to amuse yourself with something when stuck indoors, and in my case that was read until my brother was born.
Nowadays you can get 5,000 hours of “quality TV” every day. Plus the whole of the internet. Plus video games – which I love. Plus ebooks – which I still love and read on my phone. Plus unlimited access to music via services such as Spotify (get Shazam! too) and their incredible music discovery. The quality of all our lives has never been so rich. The level of personal choice – for some of us – is astounding.
It truly is a golden age in my opinion. Dumb ass politics aside.
The internet even enables ANY of us to work from home if we want to and are smart and brave enough to grab it by the balls and make it do what we want.
And yet… Disease.
We don’t have a cure for death yet, but one day not too far away we will and I think a component of it will come from the east, probably South Korea (cloning), with the computing power coming from the west through quantum computing, and the energy requirements (cold fusion) from everywhere. We can and will do it. Someone will, it’s far too tempting a prize. What we do with that set of technologies is anybody’s guess as long as we don’t kill each other first. North Korea I’m looking at you, you big dumb idiot.
And all through my life I’ve wondered what it will be that finishes me off before I see the “cure”, and now that day could be approaching. If my plan doesn’t pan out that is.
After 8 months of not knowing, I’ve been diagnosed with one of the nasty Pemphigus twins, Pemphigus Foliaceus (PF) – the lesser of the two evils fortunately. Still a killer, but not quite as bad as Pemphigus Vulgaris (PV), which is just downright nasty.
Pemphigus is relatively rare – I’d never heard of it and the only real information available is mostly cold medical science – and so I’m trying to change that and make it more understandable and manageable, and maybe less scary, for anyone finding this site.
PF is rarer still.
I won’t go over it all again here, you’ll find it all on other pages of this site, but Pemphigus is a rare autoimmune disease, thought to be triggered by a virus, that causes your own immune system to attack the very outer layer of your skin, causing blistering, eventual infection, and death if untreated. Not good.
Even worse is that the first line and mainstay of treatment is long term use of steroids, which are bad. Again you can read about the potentially horrible things that steroids can do to you on this site, or go hunting it all down on the web like I have.
Do both.
To stop your own body from killing you, then the current medical aim is to close your immune system down as much as possible, and reduce any inflammation. Steroids will do that, quickly, and solve your immediate problems, but then longer term, steroids have their own set of dangers. It becomes a balancing act of death by Pemphigus or Steroids. The latter will keep you going longer, so no choice really.
Another way you can do it is with the same immunosuppressant drugs used by transplant patients, such as MMF, which I am currently taking. If they work, then hopefully you can stop taking the steroids – that’s my current goal – but they take 4 months to become effective, and there’s no guarantees. Fingers crossed. And then you don’t have an immune system, so you can be killed by any opportunistic infection knocking around, and even stuff that is still in your body and is currently being kept under control by your immune system such as childhood illnesses like measles or chicken pox, or nastier stuff like herpes and hepatitis.
And you’re trying to turn off that control. Catch 22.
On top of that, MMF has been known to cause skin and lymph cancers.
So take your pick really.
My final goals, which I truly believe I can achieve, are either to replace the steroids and immunosuppressants with something like Doxycycline (antibiotic / immunosuppressant) and nicotinamide (Vitamin B3 / anti-inflammatory) OR to even achieve total remission from this “chronic” and “incurable” disease. Some people get there. Yes, they do, there’s hope. I’m going to be one of them. I’m working on my plan to do so and will go through all of it on here as I develop it.
So there we have it. FML and I haven’t finished with it yet. There’s too much good stuff going on in this golden age we have surrounding us for me to want to duck out just yet. I’m not tired enough of it all.
This. Here.
This is where I use my skills and my brain to dig myself out of this, or die trying.
Hopefully I can help some other people too.