Mardy's Story, as of mid August, 2010

In the first year of Lumigrate.com being on the Internet, the Your Story 'topic' within the general Fibromyalgia Forum, where I initially placed it on the 2009 Fibromyalgia Awareness Day due to so many people wanting to share their stories, had over 800 reads!  Considering I've intentionally kept the people who know about Lumigrate kind of 'to ourselves' in order to provide time for close friendships of other people with it and networks professionally to develop, that let me know that it's an area that is deserving of it's own Forum.  For 2010's Awareness, we'll hope to 'open it up', 'kick it up a notch', and have EVERYONE WE CAN POSSIBLY GATHER who wants progressive information about what it is and what to do about it to COME and read, write, learn and get back toward chronic wellness instead of chronic illness!  

I have to say that truly one of the most amazing things of the first year of Lumigrate was the number of women who wrote that their lives are better for having had this, as they realized it was teaching them to do differently.  There were MANY blessings and amazing things in the first year.  Truly, having created a place where the people who wrote at Lumigrate is the most rewarding feeling of accomplishment I have had in my first 49 years on Earth, as they were nothing short of 'amazing'.   In that so many chose to spend some of their time and energy resources writing was really what has made Lumigrate what it is:  "Lighting the Path to Health and Well-Being" in a progressive, streamlined, valid and FUN way!   ~~ Mardy

Here's the link for the archive of first year stories... they are VERY GOOD, so I encourage you to read.  I also then have my story, below, as I hope it will offer people the ideas of what might be causing their symptoms and what to do about it.  In the year of 2009/10 I am happy to say I had a HUGE medication reduction and so I'll put an update at the end to cover this past year in addition to my past years going into the 'ditch' of chronic illness and getting out of it.  

www.lumigrate.com/forum/your-stories-about-your-fibromyalgia

May 2009: I'm going to start most recently and work backwards because I originally wrote this the night of Fibromyalgia Awareness Day 2009 when all the activity on facebook had people telling their stories and I though it would be great addition to Lumigrate.com's forum area to invite them to have a 'home' on Lumigrate.  It was just a really good day for people with fibromyalgia to come together for a day and really get the word out.  It was a good day for those without fibromyalgia as well because there are solutions to fibromyalgia and professionals who believe they know what is causing it and what to do about it and every person who gets turned onto that information can help spread the word and we'll all benefit from having more productive people and less health care costs associated with it to our insurance companies, government programs and private pocketbooks.   (Have you ever said 'I could take a really nice little getaway with the money I'm spending on this every (day/week/month/year)?'

I'm priviledged to have moved to Grand Junction five years ago because it put me in the path of progressive medical providers who thought the way I did about things but knew WAY more than I did, and it is also a priviledge to be recording their seminars and making them available on a website to help others.  That is not to say I hadn't known about others in Denver and Colorado Springs, but I'd either not had the money or the time (lots of distance and traffic there), and here it just all 'came together' -- I had a job with some overtime or had the generosity of family members who were understanding what was going on and thinking of me, which took some time for them to 'catch up to' what was going on with me.  And in retrospect, I think the day I finally got really scared, when I saw my veins not liking IVs which was odd for me, I got REAL motivated about making changes and started talking about it more.  I say that to encourage anyone reading to say to themselves 'am I being honest with mySELF and then others about what my feelings are about this?' 

Now that my head has cleared and my life is so very much better I can only say that some of that time is like a blur now and I think that's because it was blurry and bleak then; I was just trying to put one foot in front of the other.  If people around me would have been more aware and stepped up temporarility to help when things were bad, or ideally as I was going 'into bad', that might have been really helpful and 'intervened' so I wouldn't have gone so 'off track' with my baseline of how I am normally.  Or 'was before', however you want to look at it.  "Was before" because truly, to be honest again, I'm now 50 and while I hope to minimize any effects and would love to think my body will completely recover, that's maybe a good theory and hope and in reality it's going to more like 'doing your best every day/week/month/year' from here on out. 

I hope that people recognize that complete education in topics is important and that the investment in time and a small amount of money to learn is an option that really might pay off for them.  "We've only just begun" and are working to develop more content that will be less expensive and timely to produce, find other revenue sources to offset the costs to the customer, and put high quality, efficient information in the blog that will serve to start routing people to the answers they are seeking. (Note from 2010 -- I no longer put important content in blogs as they are too hard to categorize and refer people to -- so blogs are now done only occasionally as a 'what we're up to' 'interest' thing. The important stuff all goes in the Forums, where things are categorized.)(And much of what I spend my time on now is encouraging and strategizing with others who I find to be valid, progressive and FUN about how to get information to me/Lumigrate for posting.)

I was providing OT services in a large PT practice in a new, great medical building in Grand Junction and my first patient of 2006 was a lovely woman with fibromyalgia named Helen (name used with permission, thank you! -- you can see her on my personal facebook photos -- Mardy Ross, I'm easy to find with the unique name) or here's the link: www.facebook.com/mardy ross.  Helen's massage therapist somehow knew about me and suggested she see me and Helen followed through with her physician to get orders for OT evaluation and treatment.  Ironically we had the same doctor, so here I was treating a patient on orders from a doctor that I go to! That was a first!  I suggested we get orders for her to be seen by Dr. Chris Young, a psychologist who specializes in pain management as well as mild traumatic brain injuries (which is also a speciality of mine ... neuro/ stroke rehab., etc), as well as a unique PT who was doing great things with people with FMS. (His name is Thad Harlow, MPT, and he just went into private practice here in Grand Junction so we wish him well and hope he will write and record for us sometime! He is a brilliant communicator and extremely knowledgeable.) 

She did great!  We had some others referred to us as well, so another PT at the clinic who was very patient and capable with the 'unique' needs of people with fibromyalgia started seeing them as well --- and they all did really well.  That clinic was perfect because they had PTs that specialized in all the things that can go wrong with FMS, such as balance, TMJ and incontence.   So Dr. Young and I met an hour a week for a whole spring season and brainstormed a layout of how we could take a group and educate them about fibromyalgia and move them forward much less expensivetly than working with us individually.  Many people do not have insurance or their copays add up and are prohibitive.  So we started a fibromyalgia forum.... it was NOT a support group, but an educational forum. We invited our patients to come meet and give input and they would NOT come because they thought it was a support group and they had tried that and didn't want it.  (And I did go to the support group and present one night and it was a wonderful group of women and they were bringing in educators such as myself and Dr. Lepisto at that point).  

We wanted providers to learn from participants, participants to learn from each other, etc., as much as the people with fibromyalgia to 'learn from' the 'teacher'.  Sorry, that's old school, NOT new and a 'forum' is a circle.  My confirmation about how that was going to work occurred one day when one of the members brought in a book and said 'I want you to read this' and I took it and put it on my desk (I had a pretty full hand therapy caseload with a fabulous OT assistant, plus my neuro patients so I was busy!).  About a week later, I was on hold on the phone and picked up the book and opened it and it was fabulous, so I looked to see who wrote it.  Milton Hammerly, MD -- my doctor in Denver when I was first and OTR and got sick (that infection/bronchitis thing we get with FMS when everyone else just gets a cold because our immune system is out of whack). 

Dr Hammerly (no longer seeing patients so don't be looking for him online) was a doctor I read about in the Denver paper when I first was an OT and moved there -- he literally allowed me to have my career I went to school for with the Myer's Cocktails he got me doing (I.V. nutrition).   I would literally not be sitting here at this moment writing about this on Lumigrate if I had not encountered him in early 1997, and so interesting how half a state away a patient brings me a book in 2007 that he has written about fibromyalgia.  Hmmm...

This is how strongly I felt about Myers Cocktails back then when I was SO fatigued and had that whole 'energy crisis' that Dr Marc Spurlock (MD) so wonderfully now discusses here on Lumigrate --  I was asked to go out of town for two weeks to open a contract here in Grand Junction in 1997 and I literally would not go unless I could find someone to give me Myers.  Through a friend who had a friend whose wife was a physician in the area, I found my way to a  progressive MD who diagnosed my FMS when I had my first appointment with him in order to get those IVs, and who 10 years later signed the order for the patient who graced my clinic on the first day of 2006.  Hmmmmmmm .... again, things coming around in an interesting way, would you say?  (Dr Hammerly wasn't given good information about me by ME .. I underreported pain so was only 'complaining of' fatigue with him, not thinking that that annoying feeling in my shoulders and etc was 'pain'.)

I encourage you to look into Myers Cocktails.  They are harder to obtain now because there is a $50,000 fee pharmacies have to pay in order to obtain vitamin b liquid, as I understand from a reliable source who looked into providing them since we had 20 women that wanted to have them coming to our group.  I learned from Dr. Rollins' fibromyalgia seminar (which I wrote about in a blog in the end of July of 2009) and from Dr Spurlock's contribution in the 'Three Doctors Interview" which is found among other places, the 'Top Picks' Forum in the Fibromyalgia section here, that there is a problem with the mitochondria (cells) uptaking vitamins, minerals, sugar (energy) in people with FMS.   You can have a normal amount in your blood and it still doesn't get into the cells so you have to get a higher saturation with the IV.   

Also, with fibromyalgia, it's obvious that if your intestines aren't working right you can't get the right stuff out of the foods and supplements, so the way to get that turned around is to jump start things with the I.V. nutrition.  I needed two a week for a couple of months then went to once a week, every other week, once a month and now I go as needed and I haven't had one in months and months (this is going to sound like self promotion, but I wanted to see how it worked for people to order the supplements Dr. Rollins' 'Supplements' video page routes people to (on Amazon.com) and nobody can say for sure what causes what, but I haven't needed an IV after that switch, and I did then start taking a supplement available at Vitamin Cottage/ Natural Grocers as it is less expensive and highly regarded by them and I really trust their product selection and if they're all whipped up about something it like is quite good!  (You can find a link to them on our Products page -- they are the 5th biggest supplement vendor in the country, ethical, have a good online ordering system which Lumigrate followers have told me is really working for them).  

Unfortunately, insurance does not pay for supplenents nor Myer's Cocktails.  They only cost $50 but sometimes the doctors you can get them through are only private pay and you have a $300 visit or so before you can get them. Newsweek had an article about them many years ago they would catch on but they haven't.  I hope our health care reform will include some revamping of the systems that have caused these helpful and inexpensive solutions to be our of reach for most people.  (So VOTE, write your congressman and senators, participate in health care discussions and become active! Write your appeals letters to your insurance.  Call and find out who to talk with or drop a letter and information to which might help them change policies.  Acupuncture is now being included by some and chiropractics has for a long time and didn't used to be.  If you need information to substantiate your request, ask a local practitioner and let them know you are advocating on their behalf.  There might be petitions they know of or other actions you can be part of to help make the change that will help YOU eventually, and those in your footprints.   But please please please get the facts and be well educated first!)

The Law of the Lightpost: Dr. Young's seminar on Health Management (FREE to download on Lumigrate.com) talks about the 'Law of the Lampost and the Law of the Hammer'.  (Light/Lumin is part of the word Lumigrate as a result, the other part is from 'Integrate').  Well, I have shone my light to figure out what FMS was caused by in all directions over the years and it took the longest time for me to realize IT IS NOT JUST ONE REASON.  I had figured that out a while before I saw Dr. Christopher Lepisto's brilliant  "Chronic Illness: Full Barrel Syndrome" last year, but his graphic analogy was so great at representing it, I really 'got it'.  (Full Barrel is also free on Lumigrate.com).  

I have done a LOT of things to run down and correct what I know/think I can related to my health and many of them have helped a great deal, some which have not helped at all, a few have made things worse.  But overall I have gotten better.  Much better.  Dr. Rollins used to see me running around on seminar nights or other busy times and it's evening and he'll joke and say 'you don't have fibromyalgia' but you know, I'm getting close to the day when it might really be true!  I got back to skiing in the winter of 2008/9 for the first time since being diagnosed! And I've gotten back into hiking in the past year too and so far haven't been the first one to day 'let's turn around'.  Well, except when there was lighning at the top.  (Photos on facebook).

What is fibromyalgia? Just when you think you know something and you have your light really shining on it, things you know will change and then you have to keep shining your light, but right now, I believe fibromyalgia is a complex condition that has its roots in many different things that can 'accumulate'.  Toxins, both chemical and 'stress'/people, our depleted substance in our foods, possible for many a contribution from a head injury that maybe didn't seem to be a 'big deal' in and of itself, but which pushes the 'dominos' of hormones and chemical responses in the body over.  

For some 'adrenal fatigue' due to an accumulation of stress that causes a catch-22 of sorts that involves everything just getting out of whack. People tend to reach to 'uppers' like caffeine and carbohydrates and then that ends up being a short term fix and long term problem.

I noticed in our fibromyalgia forum that most of us had been hypervigilant as kids -- agressive housekeepers (which came up because we are not able to do that anymore and it drives us nuts so it comes up in meetings). Dr. Young's work right now is centered on the effects of stress in childhood changing our brains much as it has been proven in studies about PTSD -- some structures of the brain actually change shape and size when trauma occurs.  He has done a really neat presentation called 'Pain, it's not all in your head... but some of it IS' because of the way pain contributes to the body/mind/spirit's changes which actually can be seen with some diagnostics.

Our bodies have an amazing ability to compensate so we get away with it for a while and then it can't  accommodate anymore and 'our barrel spills over' into the chronic illness of fibromyalgia. But the GOOD news is you can then look at all those factors and work to undo it and have chronic wellness and a barrel that is not full hopefully.... able to accommodate and adjust.   

Look at the commonalities among us!  

Hormones: 

Hypothyroidism.  Gynecologic problems (which often stem from progesterone being low and estrogen "dominance" resulting) ...  Progesterone is a calming hormone and is important for sleep, which is the hallmark problem with fibromyalgia.  Isn't it pretty easy to see why more people with FMS are women and particularly in middle age? It seems like more and more stories are showing up with younger women -- I had several young women as patients and their histories included pharmaceutical birth control as treatment for medical issues, and maybe more of the newer, subcutaneous kind and not just 'the pill' of my day.  Though you look back and say 'look at the incidence of FMS and look at the # of Rx for BCPs' and I'm just saying that to ME, they correlate. 

I know that my previous physicians were treating me using birth control pills and my current knowledge leads me to believe that contributed to my problems and bioidentical hormones would have been the right thing to do instead.  I recall in my 30s when my health was becoming problemating KNOWING inside that the BCPs were contributing, and having my partners do vasectomies since THEY werent ever wanting to have kids, why was I doing the birth control when it was this fake pill thing? 

Not long after, I was actually on bioidenticals but my insurance would not pay for them and when the Medicare funding crisis happened and I had a 33% cut in pay, I stopped doing all the alternative things and went with my good healh insurance benefits and my health unwound (I also had to work and drive an average of 60 hours a week and help with family obligations on weekends due to an aging/failing parent).   

Food allergies -- do people with FMS have more occurrence of food allergies (as in IgG reactions (immunoglobulin G) ... refer to Dr. Lepsito's seminar on Food Allergies on Lumigrate.com for more information)(and the answer is yes), and if you spend an hour listening to his very excellent interview of July 2010 which is listed as one of the Top Picks about Fibromaylgia in the Fibro Section here at Lumigrate, he talks about white blood cell testing through a less expensive means even than IgG, which he's now utilzing (and names the lab, which allows a person to backgrack and find out who in your area might be able to help you with that AND he mentions that he consults over the phone with people as well). 

I've had IgG testing done every 10 years and I'm allergic to wheat, dairy and eggs but I didn't seek allergy testing until I REALLY wasn't well... I had muscle weakness that kept me from walking up the steps to my house after riding my bicycle home (uphill) and was just fine.  I was fatigued, my muscles were 'tight' in my upper back.  I had lots of neck problems start and migraines.  I was having night sweats and my sleep was interrupted.  That is why I love Dr. Lepisto's barrel analogy -- it shows how I put up with school stress, fumes from cadavers, having a lot of heavy metals in my body for a while (like from immunizations in childhood, whatever I picked up before I was born even, and every day since) --  and my body was able to compensate for the food allergy until the 'barrel got full'...

I was in OT school and not only was it stressful (I have a learning disability and the early coarsework is pre-med physiology, anatomy and neuro), but I had to do cadaver anatomy in the time condensed summer session (so twice as long every day) and they didn't provide us with education about vapor remediation with masks for the very toxic chemicals.  And I even asked the instructor and he claimed there were no masks but I later talked to another student who had been in the class the year before and was pregnant and she had told him about the proper 3M mask and how to obtain it from a safety supply company in Denver.  (oh, yes, I hear ya... do you see how many times I WAS doing the right thing?  I was knowing, but I was trusting those 'superior to me'... you'd think an anatomy professor would retain and tell you about the respirator you need, wouldn't you?  Isn't that what my tuition dollars were going to?  Kinda the same if I ask a doctor, but you know what?  People's brains are full, or they don't care, or they have some reason NOT to tell you, like they would maybe have to pay for it and they can't with their budget, and they don't have the best ethical compass inside of them..... on and on.)

I'd already had chronic fatigue syndrome and fully recovered, but on that episode in my late 20s, I also was 'cuspy' for my whole 20s, since receiveing a vaccine which I later found out was the biggest class action lawsuit at the time because it contained thimerosol.  In 5% of adults who received it, they became chronically ill.  I started having an echo with loud noises and went to an ENT within two months of the vaccine when I reserached it years ago.  I then started having headaches and fatigue at that time, gained 20#.  Interestingly, I figured that I could lose weight by eating meat and vegetables only and I lost 20# and felt wonderful -- hmmm I wasn't having any wheat and dairy!  Didn't know I was allergic though.

A series of personal and professional stressors put my body over the edge in 1988/9, and I was able to figure out how to remove some of the 'stuff' in my barrel at that time in order to get out of chronic fatigue. (Suffice it to say that might have to do with family and spiritual 'stress').   

I felt GREAT again!  I thought I was going to be "fine" forever -- I had NO idea what was ahead in 1995 with fibromyalgia.  And the 15+ years since.  If there is a connection to head injury, then my being dropped at 8 months of age might be a factor.  I know the chiropractor I go to now has some 'space age' scanner that picked up that I had damage to the whole right side of my body.  "When did your injury occur?"  An amazing cranial osteopath who I saw in early 2010 and who I reported all the right side findings of the chiropractor to picked up all this variety of 'stuff' on my LEFT side... corpus collosum, diaphragm, hip.... and I went home thinking 'huh, wierd' and then remember getting CLOBBERED by a car a friend's daughter was driving when learning (as I was getting out her foot slipped). 

When I told the chiropractor what happened to me as an infant, he chuckled and said 'that would do it', and didn't seem a bit surprised.  Then I did a lot of chiropractic treatment with him about two years ago and it helped a lot.  I go as needed now and I haven't had to go for a long time.  (OR I have wished I had the funds to go but I get through and do other things... work more on my own stretching program and etc.) 

I think the effects of hormones (which I now supplement) on tissues such as cartilege has really made a difference.  I've been on them about three years now.  In Denver there is an amazing optometrist who has written a new book about the brain and learning, named Lynn Hellerstein (See It, Say It, DO IT!) and I went to her when I moved there in about 1997.  She specializes in vision therapy such as is needed after head injuries. She examined me and then looked back at my intake paperwork and said 'what is the cause of your head injury, I don't see it here'.   The way my visual perceptual system acts is indicative of a head injury, so I did vision therapy and when I read I wear glasses with bifocals and prisms to reduce the stress on my brain (and make me faster, etc.)  But if you think about stress being a cause of fibromylagia, it is more stressed than it would otherwise be every time I'm looking at something.   Who knows what has lead to what and there is a LOT to it to figure out but I do consider myself fortunate to have encountered so many solutions and hope my sharing them helps others. 

The barrel was full and now I'm trying to bail stuff out so I can be well again. 

I whole heartedly believe my success to date has been due to: 

Sleep (sleep disorder fits right in with the whole hormone thing, don't you think?  Also kinda fits with the mild head injury theory as well).  I bought a really good bed and committed to being in it 9 hours a night and I only recently have realized that I maybe can stop worrying if my sleep meds aren't keeping me knocked out long enough.  I'm better, it just is the way that I am and perhaps I need to spend those extra hours doing something unstressful or enjoyable (or work on better nutritional habits). 

Exercise (but I used to start my patients with about five to ten minutes or so with them monitoring fatigue and taking a break after 2 minutes at the most).  A good PT or athletic trainer can be a great help.  I used to be a gym rat and now I just walk and try to stay active daily.   Dumbells (light!), yoga, therapy balls, and Tai Chi are great and if you can get in a warm pool that is the best!

Nutrition (Dr. Lepisto has helped me with this -- and it's a core piece of his Detox and Cleanse seminar as well as Dr. Rollins' Supplements and Disease Prevention).  Also as a reference you can go to the area about each seminar and there are products suggested on Amazon.com that can get you going in the right direction ... as a free service.  Supplements: get the right kinds, I learned that the hard way and lost a lot of time because I didn't do my homework and went to a well known chain that sells nothing but 'nutrition' stuff, but 'generally' I did not know they didin't have very good products -- at least back then, maybe now they are different.   (Dr. Rollins seminar on Supplements and Disease Prevention is a great source for people with or without FMS and Lumigrate routes you in the Products area to Amazon and products that are our top choices, but there are many good supplements and in his seminar, Dr. Rollins says how he goes about deciding which he recommends to people -- there is a LOT with quality and potency and etc.).    

Spiritual connectedness.  I don't know how I would have gotten through the past 10 years had I not it.  Modern science knows that the brain is 'plastic' and I believe that meditation and breathing with focus on healing the brain and the body will actually impact changes.  If stress could make it deteriorate, then good can make it rebuild it seems! I hope I am right about that.  I highly recommend the movie 'What the #$% (bleep) Do We Know' if you are interested in that type of thinking.   

Stress management/Happiness.  If you want to see a guru in this department, look at Dr. Paula King's video snippet and consider investing in downloading her 'Strategies for Lasting Change' video we offer on the Videos tab here at Lumigrate.  I was lucky enough to get to ski once the winter of 2009 on a day she was up too and she truly is levels above me in this department of 'being happy' but I hope to some day be as good (and maybe she'll also ski as well as I do as she is doing "awesome" for not skiing much!).  I hope we see more from her on Lumigrate.com, as she is an amazing resource. 

It is difficult to have happy people around you when you are isolated because you are sick, but there are new fascinating studies about the effects of happiness even on people two degrees away from each other.  I am NOT the person I was before I was in chronic pain -- I don't tolerate noise, bad behavior, nor sitting well, but I realized I needed to not isolate after completely unplugging a few years back because my social life as I knew it was overwhelming to me.  So it's smaller now but it's good and if it's not 'great' it's because I'm not doing things to make it so.

Or I need to adjust my concept of 'great' to match my life!?  It's really easy to compare now to 'how it was' and it likely would work better to focus on today and making it good and going from there to see where it goes.   I'm pretty focused with Lumigrate right now and certainly enjoy the connections it brings me and I do make an effort to "get away from it" and balance.   I'm hoping that someday I'll write about have a fullfilling and beneficial primary relationship in my life again, because I am almost well enough again to be capable in that regard and believe THAT will put me over the top to full wellness!

Medications and Western medicine.  I didn't do my homework and it was my massage therapist who noticed the mass on my neck when my thyroid finally got so 'hypo' that it finally (after years and years of 'normal' on TSH testing) indicated there was a problem.  Had I done my homework, I would have known what tests to ask my doctor to run, and I might have recognized the symptoms and not dismissed it as 'fatigue'.  I made the mistake of believing test results instead of listening to myself and then doing some research.  There are many doctors who know about the more progressive protocol for testing but it is very hard to get physicians updated as they have so many topics to cover and limited time.   One in 8 women I believe I have heard, has hypothyroidims, so it's a seminar that is included on Lumigrate and Dr. Rollins is masterful at explaining it and I hope many people let their doctors know about it.  I also take a lot of other medications in addition to Armour thyroid .. muscle relaxants, sleep aid, neurontin as well as OTC things such as guaffenesen (sp?).  I'm constantly trying to reduce these, and lately I've felt like something can be reduced, so that's good! 

Bodywork: That neck thing so many of us have:  I've found great relief from COMPETENT advise about the herniated disks in my neck.  Nerve root injections allowed me to get through a couple of years after being kinda whacked in a flukey thing with a car a few years back.  But I also got a second opinion because I wasn't really sure if my neck could handle it if I fell skiing and my first day I had gotten my confidence up and was skiing with someone who was about at my level but had been skiing a lot recently and I fell going pretty darned fast. (you can only imagine what was going through my mind as I was going down and coming to a stop)  And you know ... I bounced just like when I was young!  I didn't break, I didn't bruise (I had problems with bruising easily for a while).  Back on my feet!  Competent PTs have shown me exercises and taught me what the limitations are (such as not flexing my neck more than 45 degrees as IL have a lot of herniated disks there).   Competent massage therapists and aestheticians have brought me great relief and helped in the times of the hormone dysfunction that my skin was really messed up.  (Which is better now as well.)

Pick your team .. be YOUr team captain! Advocate for yourself.  Develop self-efficacy ...  The first doctor I went to when I moved to Junction told me 'it's calories in, calories out, you know that' when I was concerned with the TON of weight I gained very rapidly (when it was hypothyroidism but the doctors I had then were only running TSH).  So I found another one (by contacting the local compounding pharmacy and asking who knew about hormones in a progressive way).  The allergist scratch tested me for IgE when I had asked when I made the appointment for IgG testing... I figured I'd see what he found and he found nothing and I knew I had allergy things going on so I kept asking around to find someone in town who could do the testing I was looking for.  I was very grateful when I met Dr. Rollins and he said 'I don't know if you want to do this, but I've started doing this IgG testing that a naturopath in town, Dr. Christopher Lepisto, has turned me onto'.   They went on to open the Integrative Medicine Center of Western Colorado, where the seminar material I bring to you on Lumigrate is presented live to their loyal local following.  

I had a chiropractor and a PT or 3 (one is just for when I get vertigo, for instance).   Psychologists such as Chris Young who specializes in pain can really help you understand why you are the way you are and help you get where you want to be (Strategies for Lasting Change by Dr. Paula King is a GREAT substitute if you don't have one or if you do, $20 is probably less than a session or copay!  Or going to the movie -- I rarely go so was astounded recently that it was $20 for a ticket and a drink and popcorn per person!)  And we look forward to future information in development about chronic pain by Dr. Young and Dr. King and in different formats which are faster, more portable, easier for you, and less expensive.   

Manage YOUR Team and YOUR Health:  It's your occupation... anything that occupies your time is an 'occupation', how you make your living is your 'vocation'.  When you go to the lab, ask them to send YOU a copy.  Same with radiology.  Keep your pharmacy information ... put all of this together in a notebook.  Get pertinent records from your doctors and therapists.  That's why YOU are the middle of the model on our homepage -- Dr. Young drew out that model one day when we were meeting about our Fibromyalgia Forum based on what I had talked with him about after meeting with a rheumatologist about what he envisioned patients needing (which was to see each provider on a big team regularly) and he said 'I need someone who can see fibromyalgia patients and not many therapists know what to do with them' and he was right, most PTs don't know how very gradually they need to start with FMS patients and they flare them up.  So patients don't go back and then the therapist doesn't learn, so they do the same thing with the next person.  

I recommend you advocate for your needs!  Don't let anyone do something to you that you don't think is right.  Ask questions.  Realize your provider's time limitations as well and come organized with a list and something to record the information with or take notes quickly. Take them a card or a treat perhaps --  as I think about what I have written about how much my brilliant providers have helped me with and how hard I know they work.

And Learn, Learn, Learn! 

My biggest advise and I kind of coined this term: Make Fibromyalgia Your Friend.  I don't think the 'Fight' word works so well with something like FMS... I like to think of fibromyalgia as something I have with me all the time, and I'm just going to try to outsmart it.  Like playing a game of tennis against a friend -- you might win, but I'm going to really play hard and smart and I think I'll win!  I'd like to think we're not going to be 'life-long friends' but if that is the case then I'd better learn to accept it instead of be angry at it or all negative ways it has impacted my life. 

Another thought: If every day was like today, would I want to have a lot of todays?  If the answer is 'No', that's when I really rolled up my sleeves and applied myself to finding another facet I could learn about and work on.  When I turned 45 I literally thought I was going in a direction that I might not be alive at 50 and I am sorry to say I really was welcoming not living much longer because every day was just not good, but when the vitamin and mineral I.Vs I was getting weren't boosting my energy and my veins were literally not allowing IVs ....  and it was me and the very ill and dying patients taking multiple 'sticks' to get a quart of IV into me, I truly realized that 'this isn't just about being tired and in pain -- this could kill you'.  It's kind of like someone with a substance addiction having to hit bottom and have a wake up call -- that was mine.  So I just really applied myself (and kept getting the IVs and then one day it was all fine AND my energy came back ... I will never forget it).  

I have continued to look into different things, such as being tested for heavy metals (I was extremely high in mercury and very high in lead and cadmium, which I understand is indicative of being around secondhand cigarette smoke, which is consistent with my unfortunate formative years with a smoking mother in a small house with poor circulation) and have been doing some detoxification and cleansing type things ('chelation', which can be done with IVs or orally with products), got the amalgam fillings removed.  I only had a few in my adult teeth but had a lot in my baby teeth and since my labwork showed I was extremely high in mercury I had to limit the exposure I had to mercury.  Though I love tuna, I rarely eat it, and when I do, I joke that I'll need to do some chelation to offset it, as there is no 'free lunch and no free tuna fish sandwich'. 

I hope my word here have helped you know more about what has worked for me, and I hope that Lumigrate can positively influence not just your health but those around you with other conditions or wanting and working to have chronic wellness!   Drop me an email here at the website if you'd like, or join us on facebook (www.facebook.com/lumigrate). 

Mardy Ross, Lumigrate Creator

May 11, 2010 Update of past year.  Overall, a few things have coincided.  I was feeling I was getting too much of something with my medication cocktail so I played around with it and reduced the gabapentin. I then reduced and sometimes eliminate the tizanadine/muscle relaxant, but I found I can't do that all the time, so I now take it basically PRN (as needed).  In the fall I had an episode where my thyroid or some hormone went wiggy, and I quit taking even the supplemental thyroid and that was better, but I'm not sure exactly if it's exactly right or if there's more going on which I'm not aware what it is.  The adrenal/pituitary/hypothalamus axis system maybe just is off -- it was a particularly stressful fall and winter and spring for me. 

But rather than get a bunch of lab tests done, I decided to sit tight for now and essentially sit back and see what would happen if I followed more closely the way I believe I should eat. 

Basically, in 1995 and again in 2006 when I had IgG food allergy testing done, the theory was that you needed to really avoid the things you have a lot of sensitivity to for a while and then could start rotating them back in unless you were extremely allergic.  In 1995 I had been as allergic as you could be to dairy and the MD actually told me he recommended I consider never having dairy again, and for a long, long time I was extremely compliant about dairy.  I got much better or maybe all better and then started going back to more of an average or pre-existing lifestyle for me, which included some dairy. 

Since these types of food allergies have such long-lasting effects on the body, causing diffuse and insideous / ubiquitous inflammation and symptoms, I don't think I ever pinpointed my digression again into more symptoms ten years ago as being related to relaxing on the stringency of my eating to totally avoid the things I had been tested and found to have a sensitivity/allergy to.  And that is a rapidly 'evolving' area with many different opinions, and I felt for me it was time to just sit back and let things settle out a bit and explore information and go from there. 

In the winter this past year, and early spring, I was eating a lot more vegetables, less meat and more closely avoiding eating things I had been tested to be allergic to in the past.  I saw people in the spring who thought I'd never looked better.  Then I switched gears to help with my family situation and wasn't in my own house eating just the things good for me but all the things I love which most people eat were available and it's funny, because for a while I was okay and then it's like a boomerang effect... there's a delay.  I now have been on my own 'stuff' for a month or six weeks and now I've lost weight again and am looking and feeling 'better'.   

So that's the GOOD NEWS, is I kept learning and growing and getting better, I believe.  Considering what a difficult year it was in many regards for me, I'm impressed how my health held up.  Additionally, making connections with NEW providers in the United States with their expertise in fibromygia and chronic pain, who you now see in Forums on Lumigrate -- Alice (Live is Good), Yenta (It Can't Hurt), Wm. Marcus Spurlock, MD, Deirdre Rawlings, ND, PhD, Jerry Rand, MD, Aimee Shannon, LSW -- has given me new information and inspiration.  So I look forward to what I write a year from now as an update, and to reading what YOU write and learn together here with us as well. 

~~ Mardy