9/11, Gulf War Syndrome, Fibromyalgia/Chronic Fatigue/MCS/PTSD; Commonalities and Commiseration Respectfully

It struck me, when watching a show on CNN about the women of 9/11 over Labor Day weekend, as the 10th anniversary of "9/11" approaches, the similarities between the stories they were showing of people who had been responders at the site and "well / healthy" at the time, who now have chronic illness, and the people I 'serve' through Lumigrate -- our YOUsers.  My work as an occupational therapist for over a decade of hands-on experience, my years of being involved in communities and circles of people I know personally, and most recently the interactions with thousands of people through Facebook who I proudly know are supporters and followers/ users / YOUsers of Lumigrate come to mind. They typically identify wiith having "fibromyalgia" and "chronic fatigue syndrome" and the related conditions and compiling many stories generally in my mind has allowed me to see these similarities, just as in the past Gulf War Syndrome clearly was akin to the CFS I new well by that time.  

Why would that be, these similarities between veterans, rescuers, helpers and civilians who were nowhere near New York on that all-changing day? I think this picture is worth a THOUSAND or MILLION perhaps BILLION words:

One key difference, the majority of responders are men, and women are the minority, which I'm happy to see being honorably given tribute through TV shows, books, media coverage and related Internet blogs, such as this one.  With fibromyalgia, the majority of known cases are currently women, and while within both sexes there are MANY more people on the continuum of symptoms of chronic fatigue / fibromyalgia who are undiagnosed and sometimes unaware the peril they are in, men sadly win the contest of most overlooked with this diagnosis.  

My father was one of them; never diagnosed though one of his medical providers I spoke with who had spent a great deal of time talking with him near the end of his life agreed with me that he likely would have been diagnosed today with "fibromyalgia".  When he died a year ago, we all had our initial thoughts, and mine was "He is finally out of pain."  I was the only one present who had that impression: It impressed upon me how you truly best understand chronic invisible illness and pain when you've experienced it personally.  The longer the 'better'.  

I've only had 20 years of pain, I can't imagine being almost 90 years alive and having been in pain most every of those days. Some years with more, some years with less. Growing up with that as a reality in my home on a daily basis hardened me in a way that has been of much short-term benefit as a person with chronic pain, and as a professional working daily with people experiencing incredibly difficult conditions.  It simply is part of life for me, I've never lived a day where someone doesn't have a headache or a body ache and is tired at some point.

And it likely contributed in many ways to my developing similar symptoms, not to mention the obvious genetic influence; likely it's a combination of nature/nurture (inherited genes and environment/learned behaviors).  I've worked very hard since the time I turned 29 on unraveling my 'sweater of illness' and making a ball of yarn and knitting a new reality.  There naturally are limitations and complications in that, but I persevere.  I hope that will be the case for ALL those affected directly and indirectly by 9/11.  Those of us with a trauma background with PTSD-type aspects, adverse childhood experiences, etc. are going to have a different response to what is focused in the media this week as we honor and focus our attentions on the tenth anniversary of 9/11.  There is much to learn being presented and I'm going to present my take on it here.  Thank you for being with this and putting in the time and energy to read about this complex interrelationship, as I see it and present it to the benefit of increasing understanding and knowledge. 

Recently, a close friend's son was in a very bad vehicle crash involving flight for life, and I was very close to the family when they were having their children 20+ years ago. When she texted the next day that he'd been able to be taken home to recover but was in a lot of pain, she said she was  fine, just heartbroken. I didn't understand why her heart would break over a wrecked vehicle and a son who 'had angels cushion the crash' and was home so soon! She's not used to being around loved ones in pain! That was a powerful moment for me in understanding the depths and extent that hardship has played on me.  I hope my story here today helps to guide others who have only been ten years in the position of being surrounded by the mayhem that occurs when your life goes from having chronic WELLness to chronic ILLness, and in particular when tragedy and stressful situations are part of the picture    

I been dealing with these types of conditions directly and indirectly through my family for 51 years now, with my personal symptoms now tracking back to before birth, birth and all sorts of things that contributed as my young body/mind/spirit moved forward in the 1960s (many toxins 'they' didn't know were bad or there hadn't been enough peer pressure put on people, such as smoking around children). Therefore, I have a keen interest and dedication to this 'core issue'/ whenever I see the overlap of Gulf War veterans, World Trade Center responders/workers, and the MILLIONS in the United States and likely BILLIONS in the world/on the Earth today 'on the continuum' of related chronic illnesses.  I hope everyone starts connecting the dots!  It's plain as day to me.  So I hope the 'scientists' catch up with it, the many agencies and governments, support groups and people UNITE and make CHANGE.  This is the opportunity we have in this era we are in -- as the movie Network many years ago showed in the famous scene "I'm mad as hell, and we're not going to take it any more." I hope that people turn to the independent Internet sources and not rely on the organized, mainstream media for their information. I believe that reality is out there to be found, it just takes some work now to do so.

Repeatedly, in stories about men or women of 9/11 who spent time at Ground Zero, I see the common threads with what I have experienced in my personal journey with chronic illness and those I work with and consult with:

• unable to work or unable to work at their previous capacity, which affects income and benefits
• initial difficulty getting competent medical providers and treatment who understand their conditions with overall beneficial knowledge 
• having gone from being in a good financial position to a poor position, having exhausted savings addressing multiple health issues that are ongoing for year after year
• multiple diagnosis that entail many aspects of the body/mind/spirit; PTSD/post traumatic stress disorder, GI disorders, breathing disorders/asthma, 
• higher than average death rate among peers
• symptoms that included multiple chemical sensitivity syndrome, GERD, PTSD, sinus problems/surgeries/infections, breathing problems, asthma, skin disorders, etc. (Keeping in mind Gulf War Syndrome has continued to be sorted out and defined by the government. Similar!)
• drawerfulls and piles of paperwork that is the result of the medical treatments, payor sources, etc. and the resultant stress of having a literal 'part time job' just related to the paperwork involved in managing and treating any type of illness that is ongoing.

In the case of those involved in 9/11 as workers, it took the better part of a decade with a highly visible and emotionally powerful case (they protected and rescued when we were attacked) to get funding and a comprehensive treatment center to help them, which I am very pleased to see for them; ironically, it incorporates all the things that people with CFS/FMS frequently experience as part of their symptoms and are often overlooked, dismissed, and un(der)treated but does NOT include cancer as at the time of the Federal legislation funding this important help to our heros, there was not significant evidence of increased cancer risk.

However, that changed last week with research published in Lancet showing a marked increase in firefighters who worked / were exposed to Ground Zero; the EPA had monitored and stated the levels of compounds known to be toxic and harmful were not to be concerned about.  Sadly, this was not a suprising part of the story.  Actually, none of it was surprising to me, it all made sense and it's sadly no surprise that our 'powers at be' haven't seen it the way; I would imagine many of Lumigrate's readers with educated backgrounds related to chronic illness cause/effect/treatment viewing these words right now are not at all surprised. Because it's happened to them. It's happened to me. 

All of this can be found at the following Link at CNN (below's one link to get you started), which I encourage everyone to go and read/watch and then most importantly think about, and then spread the word in whatever ways you see fit this week.  Naturally, we've made it easy for you to Print this, Email, and as always you can simply copy and paste the link to this blog onto your Facebook, email it to people you think of who might be interested in this whether they be responders, chronically ill, or providers of services to medical consumers/patients.  Or simply keep this info to yourself, I'm just pleased you've found it and I hope it is of value to you. 

May we realize how much we have in common, and how collaboration and activism can go far to advance everyone's awareness --  and hence solutions -- for ALL of us.  I've many times said that my multiple chemical sensitivity symptoms were handy for people and they should hire me out and put me in a cage in a yellow canary suit!    ... it's better than letting  be your operation point all the time; humor is a powerful tool for coping I have fortunately been blessed with, but increasingly find harder to access because of the extent and time mired in the 'muck' that leads me to things I am writing about and sharing here today in it's briefest complete synopsis. (And hence, HUMOR is included in Lumigrate's podcasts and forum content, by the way.) Fortunately, I was able to get the sensitivities reversed, so not canary in a cage for me, at this point, at least. Hence I wanted to create a website for people -- veterans, civilians, Americans, and those beyond who read English, to benefit from.

I hope that EVERYONE, no matter how well or unwell they believe their reality to be, envisioning the continuum of CFS/FMS and other illnesses at one end and ideal wellness at the other, realizes that there is MUCH with integrative medicine which addresses and reverses, and frequently solves these seemingly unrelated conditions.  But they ARE related... why?  They deal with the immune system and the body/mind/spirit WHOLE of people, and we're being bombarded by toxic chemicals, people, stress, electromagnetcs, etc. in our modern-day world. Again, look at the picture, above -- .... And we're bombarded by images too, and that is something to draw people's attention to. Keep up with what's going on but don't saturate yourself to the point of harm. 

The rather severe case of chronic fatigue that I experienced the 29th summer of my life occurred shortly after I'd been bathed at work by a lot of toxic chemicals after moving into a new and cheaply (government) constructed building to house the growing research program I worked for at Colorado State University supporting research being done for the National Park Service Air Quality/Visibility Monitoring program.  "Our" work, ironically, lead to the Clean Air Act Amendment of 1990, which overall has benefitted everyone's toxic burdens through what is put into the air by industry, in particular related to coal-fired powerplants.  It also laid the groundwork, or some of it, for the carbon tax. 

The reason I fell ill and none of the other 25 or so did at the time (who were in the addition/expansion building) sheds light on why it is that some of the people at Ground Zero are not being seen in the media about related health problems and the majority are not (thankfully for them, 'commiseration' and respect to those who are): I already had a toxic load on my body/mind/spirit that had come with me from before birth, during birth (traumatic birth), toxic exposures because of not one but two of my primary caregivers being smokers and having small houses with stagnant air flow, immunizations that contained mercury (some still do by the way), many amalgam fillings in first/baby teeth ... just like millions and millions of others in the US, most of whom did not have chronic illness but today we are looking at a 50% chronic illness/wellness mix.  That is staggering.

(And I later came to study about EMFs and took a look at that, not only did we have a major antennae farm for Denver area nearby blasting incredibly high amounts, there was a T-ing of all the power lines for the area to our west and north in the rural mountains with thousands of consumers beyond. The lines went so close over our house that if the T pole had fallen to the west, the lines would have contacted the house most likely. I edit this into demonstrate how sometimes you've taken the law of the lamp post and hammer (what you look at and then swing your hammer at) into a broad beam but it has to go EVEN broader in your study.) 

There is still more to discern from research about chronic illnesses that continues to come to the surface but has to have the 'source' considered; there are many 'vested interests' at play today in what is being presented on the Internet related to these things, and it takes experienced filtering by the team that continues to grow with Lumigrate to help with that and bring YOU the most valid, progressive information narrowed down and presented for YOU to decide from there what's right for you to believe and act upon (or not).  I hope people connected with 9/11, the VA/veterans organizations 'stumble upon' Lumigrate's information, and that they go away having gained something from their investment of time and energy, same as anyone. 

I've since found much recovery through a combination of conventional medicine (being called 'organized medicine in 2014) and complementary and alternative medicine (though the word alternative is not being replaced with traditional in 2014) over the years, and continue to work for my own health on a daily basis.  In my case, it was the 'accumulation' of things, which we presented initially with our launch as 'full barrel syndrome' via a naturopathic doctor's videos, and then with "load theory" from a subsequent medical doctor's expertise and document in forums. (Use the Search bar if interested, it's a great place to start and provides a real foundation in a very short article.) 

So I ask today that everyone who is reading this please pay attention to what is being promoted in the media about the responders to our country's disaster ten years ago and give it much thought and attention.  Talk about it in any way you see fit.  It could be a small part in change that has to do with solving many of the enormous health costs that are crippling our country! Just the 9/11 responders are funded for BILLIONS of dollars for their health care and that didn't yet include cancer being recognized and paid for, which I believe and hope will get included in the future.  They're but a small percentage and visible representatives of the chronically ill in the US which now is literally HALF the people of the United States.   (Which are diagnosed by a provider that has statistics go into the statistics, too, this figure does not include those who don't seek medical attention, who go undiagnosed, and who go to outside the organized medical system for their medical advisors.) 

In my case, had it been more clear to me the toxins in the building had 'tripped the trigger' when I went from 'having a few symptoms of chronic illness' when I was in my late 20s, as none of my coworkers were ill, I'd have used my government benefits/insurances I paid extra for or which were included, and likely have totally focused on the 'building' as the culprit, instead of moving along and seeing the bigger picture which is a continual onion to peel. It turns out that at my next job a few years later, same University system, the building I was going into had just been declared a 'sick building' due to some sort of drip pan to do with the air conditioning never having been maintained; the building was at least 30 years old.  

Figure out a new avenue to address, pursue it, see the benefit (or not, or sometimes detriment) and then keep going round and round.  I've never added up my costs; I should do that sometime; I'm certain it's in the same ballpark as the 9/11 victims/responders, except I've now been at this for over twice as long.  It's exhausting, if you let it be. Support of people is very important, and cerainly having others recognize it as a legitimate illness. So in a way, these heroes from 9/11 are helping everyone with complex chronic illness, as their cases are viewed in the eyes of the public and agencies as legitimate. 

We rely no YOU to spread the word about us to those YOU care about. I saw not ONE reference in the coverage on CNN of the World Trade Center Worker's health care that were from non 'organized medicine', it was all what you'd expect from conventional treatments -- addressing the symptoms, not the underlying causes -- inhalers, pills, and lots of ongoing lack of SOLUTIONS. And sadly, our HEROS struggling through things I sincerely don't believe are being most effectively dealt with.  I don't want that for them; I commiserate with what they have gone through this past ten years as I've 'been there' in many regards. I know that most share this feeling with me. 

I look forward to much more healing and thank all who serve our country in a variety of ways; many have had adverse childhood experience (ACE) or other traumas which have contributed to their health just as the more dramatic and publicized (and therefore 'recognized') trauma of 9/11.  And this week in particular, I thank those who 'serve and protect' and respond and rescue and support you as you do me.  I hope, directly or indirectly, my service through Lumigrate is going to be able to contribute to your well being as you all do to others on a daily basis as well.  ~~ Mardy

PLEASE take the time now or put it on your schedule/list to come back and take in this well done piece at CNN: it includes grade 9-12 learning/teaching objectives which I found well done and thought-provoking.  One of my favorite moments was a survivor with health problems related to cancer not being covered in the health fund/program currently: "What's the worst that can happen for covering the costs for someone with cancer who risked their life responding?"  Some people make SO much sense!

money.cnn.com/2011/09/02/news/economy/911_health_insurance/index.htm