J's Story AND a Compliment About Lumigrate!

Thank you for letting me share your story, "J".  I hope that it can be a bit of a platform for discussion among some of the providers that would be available to you from where you live.  Part of my concept with Lumigrate was to have information that people could print or email and ask their local providers to learn from, at the very least, and then have the providers involved be able and willing to work with people from across distances through the marvels of modern technology.

My experience in the late 1990s, when I had moved to Denver once I became an occupational therapist, was that I got a ton worse because it takes a new primary care doctor about a year to really get themselves wrapped around a complex patient and see  and treat the overall and various aspects. The primary example is learning to trust me that I can 'feel' that I'm getting something that antibiotics is, unfortunately, going to help me if prescribed, before they see it.  It takes them a while to see that I don't chose to take them easily, and that I'll just be VERY sick in a day or two if we don't nip something in the bud.  That, thankfully, has not been the case for a few years as I'm just overall much better.    

The reason I was getting so much turnover on doctors in Denver, I found out a ways into the 'shuffleboard' game, was due to their getting too many badly reimbursing HMO contracts; doctors were leaving Denver like rats leaving a sinking ship to go to better paying communities. So I kept having 'turnover' of the doctor I was assigned at the medical office I chose that was right near my office in Denver.  (I also worked half the time in Colorado Springs).  After a year of driving back and forth and spending way too much time in Denver traffic slowdowns and jamups, I moved to Colorado Springs, which had lower property values so I was able to afford to purchase a condo there.  

However, I kept the same doctors in Denver, since it was right next to the office I was at 25 weeks out of the year, until I got one of those colds that whams you when you have adrenal fatigue/fibromyalgia and I was SO sick I couldn't even call into work -- I faxed! I couldn't make anything to eat -- I wanted to order a pizza for delivery and couldn't figure out a plan to do that -- I scrounged something together and survived, obviously.  

A few years before I was coughing ribs loose after getting too sick before getting in as a new patient to an AMAZING integrative MD in Denver when I was very first an OT -- I mean, I got sick within a week after completing internships and starting my FIRST paying job in OT!  (Dr H has provided information about cold and flu prevention on Lumigrate which has been VERY helpful to a lot of people in the last two years, but he no longer sees patients as he is in administration now.  As much as I hate to see him not seeing patients, I appreciate that he's now bringing his brilliance to the administration end of things. He's getting a PhD in conflict resolution -- irony and a few jokes in that I'll 'let slide past' here, I've covered it elsewhere with Petie, the trials and tribulations of trying to be a medical worker anymore compared to the past.)

But the silver lining in my really feeling I came close to being a headline in a newspaper about a dead woman being found in her condo, was in joking about it months later at a driving rehabilitation association meeting with Karen and the other gals that were there,  who today writes for Karen's Korner on Lumigrate her response is how we became friends:  "Don't you EVER not call me if you need anything", Karen said.  I barely knew her, she lived a long ways away from me and also commuted between the two cities for work, so that was a very generous offer. (By the way, Karen and Petie know each other as well, through being OTs in Colorado Springs long ago, in the good old days of therapy and medicine in the United States (in my opinion).  

So I found a clinic right across the street from my house that was taking new patients, as one of their doctors had been out on maternity and young child sabbatical for a while, but so much had changed with insurances she was struggling to know how to refer me; I was having cardiac stuff among other things. I switched to a bigger group that had some specialists in it that were helpful for my particular needs at the time and really had a very good experience with them.  My health was starting to get better and I was hired full time to work at a nice, big, new facility on the end of town with the Country Club (opposite side of the city from where I lived).  

That's where I was on "9/11", and I was putting my condo on the market due to the people upstairs who were not safe to live under (flooded me a couple of times, were loud all through the night -- one of the men threatened me when I complained to the property manager after they didn't believe me that I could hear them vacuuming at 3 am, walking in heels and best of all JUMPING off their loft onto their living room floor which was my ceiling: the little beads in the ceiling for sound buffering would literally fall onto my carpet.  

Then POOF, my life changed one evening about dusk when I stepped in a hole in a Chipotle parking lot and blew my ankle apart with a 3rd degree sprain, bruising to my knee, and swelling that almost prevented wearing shoes. Walking and standing compensating for that lead to a tremendous change in my fibromyalgia pain and fatigue and other related things that stem from the hormones that were sent into crazy mode; I had a terrible case of plantar fasciitis.  I was going 3x a week before work for PT.  I was fortunate the injury was being paid for on a property insurance (they later thanked me for not suing them for their negligence with the hole in the parking lot and poor lighting), because my HMO's response was to have the MD the day I went in after the fall, was to give me a sheet of paper that was literally 10% of what my ankle needed to get back to allowing me to walk or work again.  

I found out that the reason the Springs had such better doctors was they had essentially banded together and agreed which insurances to take and not, related to the HMOs.  Now, that's important to make sure you read and think about related to the paragraph above: I must have then had one of the BETTER HMOs, since they took it in the Springs, and yet what was offered for a sprained ankle was not adequate.  And this was ten years ago RIGHT ABOUT NOW, actually! 

But, I'd been very underpaid for two years at my previous job in driving rehabilitation, as I was their first OT and it was a process to get them to have a pay scale appreciative of what an occupational therapist is and brings to the table.  Then I'd been so driven into the ground with all the driving and taking care of my infirm father half the weekends, that I had not worked for the better part of a year; I was looking for work, it's just like now where there just weren't many jobs out there.  I started to retrain to go back into management (I needed to increase my computer skills for Windows-based versions of all the things I knew inside and out before I went into medical and NEVER used a computer for my work until 2005!  People who haven't worked in medical do not realize how messed up it is at so many levels.) 

Since it was no longer in my budget or with room on my credit cards to see providers who didn't take insurance, my health went SO backwards; had I known what was going to come from that, I believe I would have made some different choices somewhere related to $. I don't know what I could have done differently, really -- I was gone for my job commuting or at work from 7 am to 7 pm at the earliest, I wasn't taking vacations, I've not taken a vacation since I got fibromyalgia in 1995, I chose instead to invest it in my health care.  I wasn't going out and recreating with friends in any way, partly because my father was aging and had a progressive neurological disease that was yet undiagnosed and treated, so every other weekend I went to his house to set up meals and do whatever needed to be done around his house and mountainous, wooded/grassy and SNOWY property.  I remember totally exhausting myself one day cutting back the willows by the creek so he wasn't pulling out on the blind corner with more danger than was there when the willows weren't a factor. 

About the time I turned 40 in 2000 he turned 79 and his hands had suddenly swollen up like sausages, it turns out from not knowing he was allergic to wheat.  I'd known for five years I was allergic via IgG testing to wheat, dairy, eggs and  another genetically related person had know for several years too, and he was just shriveling away and shrinking in height, but he didn't try giving up wheat until he was literally assisted living level for amount of assistance he needed.  Once he was convinced to take wheat out of his diet, his hands returned to normal almost immediately. His doctor had done bloodwork and found signs of infection, provided antibiotics and wrist splints and diagnosed it as 'carpal tunnel syndrome'.  I sometimes wish I just got in my car and drove to South America or something when I think about all the ineptitude that befell him and so many others I have known in my life in Colorado's medical systems.  (And he had outstanding insurance, it wasn't an insurance or $ issue, it was knowledge of providers combined with behaviors on his part about discovering and solving problems.  He liked to think about problems and if you solved it .. then... what fun is THAT? .  It was good experience for me in where the boundaries are in what you can do at what stages as a parent's health mentally and physically become compromised.)  

I kept looking at the very helpful medical interventions that insurance didn't / doesn't still pay for as being an 'investment', because I wouldn't be able to work and support myself, do what I had trained so hard to do by getting an OT degree, or help my father if I didn't.  I want to talk a little more in depth about the financial cascade that comes when a person had chronic illness/pain/fatigue because it's repeated over and over that the #1 reason for bankruptcy today is medical bills.  It was recommended I file for bankruptcy while I was in Colorado Springs, and as soon as I had a few 'lucky breaks' and I avoided that, I was given, almost out of the sky, this opportunity to move to Grand Junction.  While it's not been without similar problems here in a couple of work environments before I started my own business and then created Lumigrate as part of that work, it's been absolutely incredible the things that fell into place that allowed me to be able to do Lumigrate.  Most importantly, my health came up out of the drain and I felt like it was high time there was a website that was really dedicated to integrative medicine and complex health issues such as CFS, FMS and anything surrounding the core causes (nutrition, toxins, etc., which is a part of virtually EVERY person's life today). 

I have a history my whole life from birth of being smart with money and being a 'saver' not a spender. I had purchased my first 'real' house at age 25 when I got married, but I'd saved money while in college by purchasing a large travel trailer and then a mobile home which was only $75/month for lot rent and in walking distance of the University (in Fort Collins - people later died there in a flood and the train regularly derailed, needless to say it likely contributed to my health problems related to sleep problems since I had a trail literally within 100 feet of me about five times a night).  

I had no debt when I got divorced in 1992 (and that did not included what the law allows for 50%, I actually only asked for 1/3 as I had made 1/3).  Per the financial advisor, I had as much money stashed at age 30 as a woman should have at age 40, so I was not an 'irresponsible' type.  I had then gone back to complete my OT degree, which did created student loan debt and I bought a grill and groceries for several years for my significant other and myself and paid for my own lift tickets and airplane ticket and cruise to Alaska, the one trip we too that he'd wanted -- might sound frivolous and it was, but he was paying for all my housing and vehicle, so I thought it wise to say 'sure, I'll go on that!'  After all, I was 'the one'.  Or so he thought before I had health problems come on. There was also a very intriguing woman on the cruise that also was riding bikes with us who made him realize maybe i was NOT the one; some people are built to partner and not be scared off by medical maladies and others aren't.  He was one that was not.  Our relationship ended a couple of weeks after I graduated with my OT degree, when I was going to Denver to look for a room to rent nearby my internship for the weekdays, he said 'you better make that a place to live ... but I'll pay your movers!'.  GREAT -- I'd sold my vehicle since he had an extra. I bought the old SUV we'd shopped to replace with the last of my savings that had been with me since I was a teenager; I'd also had a $10,000 deductible and the neurologist had thought my symptoms seemed like they might be MS, so MRIs x4 and a lumbar puncture took up more than that!  (And spending another $400 on a credit card to have IgG testing had totally turned my health around! .. for a while. I'm not really sure what all derailed my health a few years later again -- all the driving, long hours, no enjoyment in life, financial stress, family stress with the aging parent -- it's all so 'interrelated', as J points out in her assessment of Lumigrate's information's helpfulness.)   

I kind of limped along in my years in Colorado Springs (literally when I blew out my left ankle -- Petie who writes in the functional/occupational therapy forum with me here at Lumigrate took over seeing some of my patients that were within her lifting restrictions). While it was a good place to find a doctor, it had the same criminal-minded medical businesses and managers that seem to be almost everywhere anymore in the big medical businesses, so it was NOT a good place for me to work.  

I moved to Grand Junction eight years ago when the opportunity came, and part of why things are particularly good here for medical is that it's about 100,000 people who use the businesses and organizations here, so the smallness allows for a lot of word of mouth or other 'easy advertising'.  (Naturally, today, the way facebook works, that works particularly to the advantage of marketing locally).  There also are several organizations and groups that long ago conspired in ways to make the costs of care be lower and the outcomes for patients higher, something that is being studied by all the big medical-change brains in the US, I understand.

So Lumigrate launched with information from Grand Junction's providers who had come together for a year or so to be part of an integrative medicine center. I have gone on to recruit different providers who are local to essentially have a respresentative from all the aspects of integrative medicine that is IN Grand Junction for the local people who follow Lumigrate, and then for everyone else in the US, there are providers who serve people from coast to coast, from all the disciplines.  We have a few types of providers who aren't represented, but overall we have a GRATE group.  

Therefore, I encourage people to spend time repeatedly, looking at videos, reading the forums, listening to the podcasts that Lumigrate offers and then ACTING UPON what you have the ability to act upon.  That might be for someone, doing a one minute meditation we have in Forums.  For someone else, it might mean they get to Dallas and see Dr Spurlock, who requires a face to face meeting the first time and then after that he can follow up through the telephone and laboratory testing done in your own community.  (He'll be getting an AMAZING discount from Quest Diagnostics, I understand from a recent conversation with him.) If a person is so lucky to be in Grand Junction, they might see one of the many providers on Lumigrate who are located in the Grand Valley or surrounding areas.  

I'm fortunate, 'my fibro' loves the weather of Grand Junction ... we're basically the eastern end of the same high desert you're living in, J.  It took me a year or two to see my health got worse in the summer here not the winter as on the colder Front Range, because in the summer here I become less active due to the heat in the evenings -- it just doesn't cool off until the morning, and that's when I am NOT awake, as I'm working on recovering my adrenals and that late morning sleep to me is the #1 thing I can see that drives my pain up or, thankfully NOT, if I'm doing everything right in life!  

I had not realized that your city (which I removed to keep this more 'neutral' in terms of your identity and the story's impact overall) had inferior health care.  Interesting the way there are 'pockets' of good and bad.  I hope that my explanation of Lumigrate and weaving my history in here benefits people who might read it.  

Thank you again, J, for the story and for the lovely compliment about Lumigrate.  It's a lot of work but when I find out how it impacts a person, it's very appreciated.  And I know that there are tons who are reading and being helped who are not saying anything to let us know, but the statistics are 'there' every day and we have a really solid following today, due to the wonderful, GRATE group of providers.  I hope they all take pride in having something or a lot at Lumigrate that is part of the whole that is helping so many.  

~~ Mardy