This time last year, one of my adult daughters was on her death bed. We had a lawyer come to her bedside to ensure I had legal permission to make her medical decisions because she was very clear about what should happen in her final days. A full-time carer was engaged to help her. During the years of her decline, she'd been examined by numerous neurologists ... none of whom offered any hope. They thought she had a very severe case of Multiple Sclerosis - but they didn't know what caused it, and they had nothing to offer that could fix it.
Within a few months of nudging death and planning her funeral, she told me she wanted to sack the carer. She was still legally blind, but insisted she felt strong enough to walk, eat, shower, cook etc. So we let the carer go. Her health continued to improve - much to everyone's astonishment.
This year, if you met her you'd never know she'd been sick. She lives alone and functions brilliantly. She can be active all day and into the night - and can see well enough to have been given back her driver's license.
I will not be writing about her condition, her decline or her recovery. That's her story, and she can tell it in her own time. She managed to keep herself alive using natural remedies and alternative therapies for years while we both continued to research a chronic condition that nobody understood, and doctors couldn't explain.
TOPIC TO PRESENT ...
What I am writing about is one KEY factor that my research indicates many people with chronic medical illnesses share. I am explaining a very complex - but incredibly important - medical issue. It seems ridiculous that it took a dying young woman and her mother to put together pieces of a complex puzzle that presents an extraordinarily clear picture of how so many symptoms of chronic medical conditions can be eased and reversed.
It infuriates me that so much money has been spent on research into MS and Parkinson's and more than 30 other chronic medical conditions ... and nobody else seems to have bothered to compare EXISTING research to see a clear link. I won't write about how much that frustrates me (at least in this first article.) I will, however, present the clear evidence so that even Blind Freddy - and Blind Freddy's doctors - can find it for themselves.
I will present ONE QUESTION that everyone with a debilitating condition should ask their doctors ... and I'll even provide the information they need to present to those same doctors to get them on the right track if it turns out I am right. I can't guarantee I can help everyone ... but I'm willing to bet I'll end up helping a lot more people than doctors and drug companies are currently helping.
Here's my problem ... I don't know if HP is the right home for it because there's so much to say, and I fear a single hub might appear too long. However if I split it into smaller parts, there's a risk that important factors may be overlooked by readers who are too 'excited' to click on another page. (I need people to understand all the issues - because they can't rely on their doctors to tell them.)
I'm wondering if I should create a new (but simple) website to accommodate this topic instead of putting it on HP. I anticipate a significant number of readers would be interested in following ... and I don't think outsiders can 'follow' a hub without becoming members, can they?
Based on your experience, do you think it is possible to successfully manage such a complex topic on HP? And if not, what else/where else would you suggest?
Thanks for any ideas you might offer. There's a lot of families going through the same heartbreak as we were, who deserve to know that existing medical research ALREADY holds the key to managing chronic illness much more effectively. I like to think they are not doing it on purpose, but doctors are making millions of people's lives much worse than they should be.
Geez. It's so simple!! My big challenge is presenting all the factors in a way that everyone can understand. I want to do it quickly though. I hate the thought of people suffering unnecessarily.
What would you do, if you were me?
How many words do you think you will write?
I have written 2,320 already ... and that's being very disciplined. I'm thinking it will take at least another thousand words to cover the most important elements.
Then, put it on HP. That's too short for an individual website. So long as your article is under 10,000 words, it won't be too long.
I agree when it comes to the first page. In the first instance, I'm thinking it is important to cover all the important points to get people started.
But there's a whole bunch of additional pages I could create though, WF ... like giving specific links and info about more than 30 chronic diseases that would make sense to have their own page.(A page someone could print out to take to a doctor.) Plus writing specific pages about things to avoid - and why.
Do you think it will be too 'hard' for outsiders to keep track of additional info that's added with new hubs? (I wondered if perhaps I should activate my idle twitter account or something. Is that a way to get around that? Or maybe facebook ... and suggest readers follow there. What do you think?)
I'm also wondering if I should look for an easier way for people to communicate with each other. You know, like I can respond to your comment directly here ... but at the bottom of a hub all comments appear in chronological order.
People with specific conditions might want to ask for feedback from others with the same.
First of all, you can fit a lot of additional information in sidebars (text capsules moved to the right).
Secondly, you could post the Hub and see what kind of comments you get and if there is interaction such as people coming back and commenting several times.
On a website, you would have the same situation regarding comments. Personally, I find it easier to follow comments in chronological order because it is easier to see which postings are new.
If you start getting thousands of comments (and you should be so lucky), then you might think about opening a forum on one of the free forum hosting sites. I think a forum is the best approach for what you are trying to achieve.
I'd like a notification when this gets finished. Is there some way you can let me know? It might have info that can help me.
Hi Barbara. Here's an example of my problem, straight away. You are asking if there's some way you can be notified when I publish the first page. You're a hubber, so you just have to follow me to get notified when I publish a hub. What about general readers who might read my first hub ... and then want to be notified of any follow-up? How do I notify them?
Oh, and yes, it may well have info that can help you. I sincerely hope it does.
To Writer Fox; I am continually in awe at your precise, unbiased and knowledgeable comments/advise to anyone without regards to anything else but the best interest of the author. I wish I could be more like you ( or at least be as knowledgeable as you) and my hat's off to you sir.
My suggestion is for you to write your story in bits without publishing first. You can then group the entire series and publish the parts at intervals. I'm deeply interested and I wish someone could send me a fan mail once the story is on air.
Personally I hope you will put it at HP but if you don't I hope you will at least put condensed versions of it. Personally I would follow it even if in different parts but I do understand your dilemma and have an important article on potassium that fits as an example of this. Not near as many read the follow-up!
Whatever you choose to do please let me know if it is not here for I will surely want to read it.
It sounds to me like you have the makings of an Ebook or even a hard cover book. One word of caution...when you are discussing health issues, you carry a good deal of liability when you do so. So take care in how you present your work, no matter which method you choose.
I just joined today and don't expect to get even one intriguing hub. It's complicated. I wouldn't join any of the social media groups. But, I do see where your story is similar to ones I've experienced, and should be widely received because many have suffered due to medication/drugs prevalence. Staying drug free is the best way to combat potential disasters.
To answer your question....Open up a discussion on a popular forum related to this subject, and make it clear from the outset that you have an experience that circumvented the establishment, and how you persevered through it all. Be very specific as to the ordeal you and your daughter went through. The world wants to read it. I certainly do.
try writing at hp first and see the outcome, maybe you can see the positive sides
You are saying, as a veteran on HP, that I should continue writing on forums like these?
That I can do, and have done, with excellent results.
This particular story has my interest, and I want to engage in conversation related to themes like this one, which is a struggle for many.
Bear in mind that if your hub does not get a certain number of visits, Hubpages will remove it from the view of the search engines and no one will be able to find it!
If I had really important information I wanted to put out on the Web, I would not dream of making it into a hub for that very reason.
Hi WA. I don't have any concerns about the hub not having enough visitors.
It is a fascinating story and one that needs to be told.
I think Hubpages would be the best place to put it. Maybe you can start with basic information and then write pages with more details as you can finish them.
You should have concerns about it not getting enough visitors, because if it gets unFeatured, then it will become invisible which means your message will be hidden.
My immediate reaction to this was - write the full story on a blog at Wordpress.com (I'd be happy to create it and post the information for you). Then sit down and write an article about it on every site you can think of (HubPages, Zujava, Wizzley, Seekyt, Infobarrel, etc etc), linking to that blog in each case. That way you could spread the word much wider and still have a central information point for people to go to. You could also stop worrying about discipline on the Wordpress version and make it as l-o-o-o-o-n-g as you like!
Remember that if you write a series of articles on HubPages or any other writing site, they're scattered all over the place and the site navigation doesn't make it easy to follow a series. Putting it on a dedicated blog solves that problem - and makes it easy for you to add new material if you find that's necessary. It also provides a place where people can come and ask questions and open a discussion.
The challenge with that strategy, of course, is to turn out a unique article for each site. If you can do that, then that's the way I would go.
I should take a moment here to clarify that I am confident I can provide an effective 'starting point' for people in an article of about 4,000 words. If I'd come across such an article years ago, it would have saved us a lot of time, pain and suffering.
But I'm a former investigative journalist, so I am used to digging for the info I need ... and I'm quick to discard anything that's crap or dubious, and to cross-reference things.
Someone with a severe chronic condition - or multiple conditions - is unlikely to be able to put too much effort into researching the specifics of their own illness. It would be great if they could share their own findings and experiences - and find each other easily.
In an ideal world, I'll publish my 4,000 words and people will go to their doctors who will say "Gee, why didn't anyone point that out to me before?" and will actively take steps to stop making the same mistakes they've been making for decades ... and help their patients.
In the same ideal world, associations and support groups will start discussions with a simple link to my hub ... and they can all have their group discussions on existing boards. That's how I like to think it will work. But I've been around long enough to know that the logical progression is not necessarily what happens.
I'm trying to anticipate potential problems ... and have a strategy in mind in case its needed. If I need to publish additional pages, I will. However, I don't want to take the time creating other pages if they are not going to be needed.
You could do both actually.
If the article is 3,000 words or so, absolutely publish here. It sounds however like you have a lot more information that you are condensing down. In that case, why not do something like a blogger blog (free) and what you don't or can't fully cover in a hub, you can add a link to your blog for further reading, ongoing information as you uncover it etc.
With longer hubs, they can do very well if you break up the text a bit, use sidebars, things like bulleted lists - anything that breaks the text up makes it easier on the eyes and people will read for longer.
Most of my hubs are quite long and still do very well.
Looking forward to reading this when you publish it; it sounds like a fascinating story.
Thanks, Christin. Many of my hubs are long ones.
It is the complex nature of the topic that has me scratching my head about the best way to package it. Generally we'd be very specific about who we target with a hub.
This one, though, has to embrace a much wider audience. Why? Because up until now all the existing research targets very specific groups. It is only when you put them ALL together that you can see the jigsaw puzzle picture clearly.
So I'm struggling to create something that meets the needs of a diverse range of sufferers.
I still have to come up with a title - another problem. This is definitely the most difficult writing project I've had for quite a while.
Hmmm. Perhaps I should test the first 'starter page' out on a few trustworthy hubbers with chronic medical conditions ... and see what the feedback is. That way I'll know if there is enough information in it to publish - or if a newcomer to the issue needs more.
When I finish it, the first person I'll offer it to is peeples with her lupus problem. (She's a friend, and I know I can trust her not to steal it.)
Anyone else with a serious chronic illness (or multiple illnesses) that doctors can't help/control/relieve or explain? Or a family member who is suffering?
I don't want to offend anybody, but I'm not about to send an unpublished work to someone I've never encountered on hp before. I will be annoyingly selective in who I choose to trust.
If you want to put your hand up, let me know. If your chronic illness is on my list, I'll consider giving you a preview.
It is after 4am local time now ... and I really have to get some sleep. I have an appointment with a doctor tomorrow. I intend to find out just how much they know about my hub topic. (It will help me make more decisions about how much info and how many hints for doctors I'll have to include.)
Thanks for your time, everyone.
I agree with ChristinS,
Publish a core article here on HubPages (circa 3000 words), which would attract a lot more readers initially than a brand new blog. Have a couple of links in this article to a website or blog which contains many more pages, more condition specific, case histories, references, places to go for help, procedures to follow etc.
Readers could then have 2 options: leave comments on the hub itself or, if they wanted to know more, they could join the website via the Hub links to interact with each other about their particular situation.
This would mean setting up the website / blog first. Then the Hub would turn into a very detailed summary (3000 or so words) of what the website has to offer and how it can help as many people as possible.
Complete forward planning would be required for the whole project.
Good luck, let us know when it is done.
It sounds like an interesting story to follow. I would publish a hub covering the basic story with sub-topics covering specifics. I would also make sure you include a medical disclaimer. A blogger site could be a great addition if you have much more that you want to say. Another thought is to consider publishing an ebook of the entire story with subsequent chapters covering resources available.
Hi, LTM -
First, I'm so happy that your daughter's health has improved - what a miracle.
I agree that a blog might be a good place to focus the readership. You could, however, create a hub with branch-off hubs, as some have suggested. I can see how one anchor hub would allow you to link to subsets that would go into greater detail about various things (nutrition, exercise, whatever). This topic might have limited readership (I am not even sure what you might title the hubs!), so there's room to adapt to all of that in this venue - on HP, you can create a new hub with a different url if you realize there's a better way to do it. On a freestanding website, you might be stuck.
If, after giving things a period of time to mature, you don't see the traffic you feel is appropriate, then consider a blog or another outlet. The good thing about starting here is that you're known to so many of us, you already know this platform, and you can easily create new content (no new tricks to learn).
Finally - we all know this site is undergoing changes - you never know what the coming year will hold for traffic.
I'm not sure how a freestanding blog would limit your ability to change URL's, in fact the opposite is true - on your own blog, you can choose what the URL of each post is, and you can change it any time you like (unlike here, where it's fixed once the Hub is created).
Firstly, I am so glad this story has a happy ending for your daughter.
I was beginning to read the posts, and I was going to tell you to ask Marisa Writer, because she has always given me good advice, and knows everything about online writing. Then I saw she posted when I got further along. I agree with her.
Write enough here and everywhere to get people interested, and take it to your own blog. People are going to want to ask you questions (and you have to watch your legalities there as far as medical issues), and I would think there would be a lot of conversation going on, something that keeps a blog alive. I'll be watching to see what you decide. Good luck.
I agree it's never a good idea to change URL's, just answering Marcy's comment about how easy/difficult it is on HubPages vs a blog.
You can create new URLs here, too - I was referring to using HP as a place to test-drive the topic and its spinoff hubs, since you can always create a new hub and transfer the content to it if a title doesn't work. I don't know how blog sites work, But a free-standing site would be more difficult to transition into a different URL if the title(s) need to be adjusted.
The only reason I suggested this is because I am not sure how these hubs (blogs, whatever) might attract searches. I suspect that might be an area that will not be easy to figure out at first. It's a specialized topic, but it certainly sounds like one with merit, and one that some people would be thankful to find on the Internet.
If you mean the name of the website, then yes that can't be changed once you create it. However that could be kept short and after that, there is unlimited scope to change the URL of individual posts. So say the blog was called noname.com, then a post's URL would be noname.com/ nameofpost. You wouldn't be able to change noname.com, but then you can't change the HubPages.com part of your URL either, so it's no different. Except that on HubPages you can't change the name of the post.
Besides, as WF says, it's never a good idea to change the URL anyway. Any benefit you get from using a better keyword would be more than offset by losing the benefit of age, any links you may have collected, etc. You can get just as much benefit by changing the title, improving the keywords in your text, and leaving the URL untouched. It's possible to have a very successful web page with a URL which has nothing to do with the subject.
I'm so sorry that you've had to go through this ordeal and, at the same time, pleased that the outcome has been positive. I agree that you should start a blog on your own website where you can tell your story, include links, update experiences, and allow others to add to the discussion by joining your site. This will help keep away spammers. I wish you all of the best!
I am reading every comment and thinking them through. Thanks for the input. I can see advantages and disadvantages to my various options.
Here's what I'm thinking at the moment ...
1) If I set up a separate site, someone will have to look after it. That someone's not going to be me.
I will move onto something else. I am greatly relieved that my daughter now knows what she's dealing with. She still has a medical problem - but she understands what the actual problem is now, and can do her best to deal with the real issues instead of the 'We don't know what causes it so we don't know how to fix it' attitude of doctors until now.
There are lots of existing sites that could shift their focus to discussing what I'm presenting. I haven't invented anything or even 'discovered' anything new. I am simply highlighting existing facts that are not known to most of us. (I can't believe it took me so long to figure it out. In fact it was only AFTER my daughter had overcome the worst of her symptoms that I put all the clues together.)
We addressed each symptom individually (without using drugs) - all the while looking for the Cause of each symptom. We went on a journey in search of WHY my daughter was chronically ill ... and it was quite a surprise to discover we'd reached our destination.
2) I will not be writing a book about it.
My daughter will probably write a book about her experience and how we reached this point - and that will be a fascinating read. It will give a much bigger and more interesting account of what she went through.
My focus is simply on one key issue that relates to the basic process of accurately diagnosing what's wrong with a person. If you don't understand that, you have no hope of successfully addressing the problems that manifest.
I have already mentioned this issue to a number of people with chronic illness. One said, "I would have paid a fortune for this information! You should sell it in an ebook to recoup the time and money you spent finding it." I told her to send me a thank-you gift when she's better.
I will not be selling the information. Whatever I write about this topic is a gift from me - in honor of my daughter's magnificent effort to defy those who said she had no hope of recovery.
3) I can see a number of advantages to publishing here on hp ... probably greater than the disadvantages at this time.
For starters, lots of you know enough about me to know that I live off the grid with satellite internet and therefore have limited access to the internet ... so I won't be busy spreading the word on other forums or sites etc. I will write and publish the first article.
After that, perhaps hubbers who read it will help to spread the word. I'm sure there are many others like me who believe everyone deserves whatever help they can get to cope with debilitating illness.
4) I am more likely to discuss this issue further (and answer questions) here on HP than anywhere else.
I am in the habit of checking HP and looking at the forums here. I don't have any objection to helping people understand things I might not have explained as thoroughly as required - particularly if they can share it within their own networks, and save me from having to repeat myself.
I wouldn't encourage people to try and 'rewrite' what I write ... because a huge amount of time and experience has provided me with the ability to structure each word, sentence and paragraph. (And I'm not talking about my experience as a writer here; I am talking about my experience learning about the issue.)
Messing with my original work to try and avoid plagiarism could make the message less effective. However I think every hubber could easily find their own angle to write about if they wanted to. All those places Marisa mentioned (like Zujava, Wizzley, Seekyt, Infobarrel) could provide opportunities for hubbers to raise the issue.
If I leave my original hub in place, it will be easy for hubbers to link to it ... wherever they write.
Our hp community could potentially help a lot of people.
If you set up the site on Wordpress[b].com[/i], no one will have to "look after" it because there is no maintenance required. The only "looking after" would be answering comments when they are posted, and you will receive an email to notify you when/if that happens.
Thinking of the future, that site would be of great assistance to your daughter when she's ready to publish her book, because it will have age and reputation.
You could still write a Hub here with a link to that site and ask Hubbers to spread the word about the site.
If you write the hub I will be happy to put a link to it on my personal blog. It began with readers from HP, but I have a different group of followers now, and I'd be pleased to do anything to help you get your story out. Please don't hesitate to ask if there is anything I can do. I mostly write about metaphysical topics, but health and death pieces have found their way to my blog as I contend with these issues in the lives or deaths of my loved ones.
Thanks, Jean. If more people do the same thing, it won't matter what I title it or where I post it. (That takes some of the pressure off me, thanks.)
All I ask is that you read it when I publish it, and then if you see its merit (as I'm sure you will), share the link far and wide. Your personal blog is a great place to start.
I am off to see a doctor I have never met before to see what she knows about this issue. My research continues.
I'd write it as a series of hubs here, with different links attached to each one. Maybe set up a website or Facebook Page as well and link from one to the other if additional information is available on each that way you may reach a larger audience, and this seems too important not to share with as many people as possible. I know I personally want to be notified when you publish this information. Doctors look after drug companies interests to a large degree. We need to see that and look past it for answers.
Hi Jodah. Because you live in Australia, I know for a fact your wife could just walk into her doctor's office and ask for the test to be done. I just walked into the office of a doctor I've never met before and left with the required paperwork for a blood test.
The doctor had never heard of the test I requested (as I suspected), but when I asked her to google it, she was met by a sh*tload of medical reports, research etc. Suddenly she was paying attention.
Then all I had to do was mention a couple of general symptoms that I can lay claim to (one, as long ago as when I was just 22), and she immediately ordered the test.
Now, remember, I am not suffering from any chronic health condition - in fact I rarely ever go to the doctor. I didn't prattle on about my research or anything. I told her one of my kids had the test and showed her the results (she wasn't sure exactly what to ask for but the test results showed it, so I'll be sure to include that in my hub) ... and she's ordered the blood test for me.
If I was a chronic sufferer (like your wife is) and said, 'I've read that my problem might be at least partly linked to this issue', I have no doubt the doctor would order the test. All doctors - in this country at least - have internet access. I imagine it would be the same in most other countries.
Now here's the main problem for your wife and other sufferers, though. Doctors DON'T know much (if anything) about it. So once you get your test results, you cannot expect to get good advice about what it means.
They could potentially give you advice that would make your wife's condition worse. Promise me you'll pay full attention to what I write! You have to look at the BIG picture if it turns out your wife is a contender for improved health.
Don't knee-jerk with the first 'solution' the internet offers. Honestly, it could cause you even more grief. You have to follow the steps I will outline. (Simple, I promise.) Just make sure you read every word.
I promise you I will take note, and follow the steps you outline LTM.
LongTimeMother - just a comment from another "Long Time Mother" - I have been at death's door, and recovered without any medical advice or medicine, so I will be looking forward to reading your article, eagerly!
What a delightful outcome for your family, to what was rapidly becoming a heartache.
Thanks to all of you. I am spending every spare moment trying to get this ready to publish. I don't want it to be too long, but I know it needs enough to 'make sense' to anyone who is new to the issue.
I've decided I'll just publish it as a hub ... and then rely on feedback from you lot. I'm sure you'll be quick to tell me what you think might need work.
I'll let you know when it is ready to go. Thanks.
Greatly looking forward to your new hub. It's wonderful to hear your daughter has made such an impressive recovery.
It does seem most doctors focus on their own specialty and fail to join the dots, so I can understand why an overview of various research projects would be useful. As someone with a long term problem, I'll be reading with interest, and sharing the heck out of your hub.
Hi all. Here's an update. As you will recall, I went to see a doctor and asked for a blood test. Well the results are back now and what I suspected has been officially confirmed. None of the doctors at that medical clinic had ever heard of it before, but now two of them are conducting their own research and will meet with me next week for us to figure out 'where to now?'
This part of the exercise is important so that when I publish, I can accurately report what people can expect (and ask for) from their doctors. I am in Australia, but it is not that different to the US and the UK and NZ and other countries. We all have different medical systems, but doctors tend to respond similarly to specific issues.
I want to try and make it as easy as I can for everyone to benefit and take action. If you don't have enough information to convince your medical practitioner to actively support you, I will have failed in my effort to help.
I'm hoping to publish this week.
I will be anxious to read your latest thoughts and findings.
All of the best,
I can't bring it in at less than 10,000 words. I'm currently working on Plan B. Well, to be honest, it is more like Plan J if you count all the times I've added and removed big slabs of it. This process is somewhat overwhelming.
I would like to be informed, too. I have chronic conditions, and I have a premed degree, as well as four years of Latin, so I can understand the medical terms. (I'm not asking for a sneak preview, BTW.) I have a number of sites/social media accounts for different purposes, so I'm happy to help spread the word. I have friends who are also professionally involved with these issues and I am sure they will be wanting to tell people about your articles.
I want to commend you. One of the reasons I chose not to pursue medicine was the disdain showed for integrative research.
I have personally healed myself of a debilitating condition using alternative therapies so I am most interested in your information. If it were me, I would start my own web site and have an ebook for download. I would use hp and social media to drive traffic to your site. I hope to read your material one day soon.
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