Reflections from the Season. Your Gifts to Us, Our Gifts to YOU End of Year!

This is Lumigrate's first "holiday season" and I was curious to see what the 'rhythm' would be here in the website world of health education related to progressive concepts such as our 'integrative medicine' promotes.  When I worked seeing patients as an OTR (occupational therapist, registered), there was a definite cycle to the year.  Before that when I worked at Colorado State University in the three departments over 10-15 years, each had their own cycle based upon when the fiscal cycles were and the academic schedule.  When I was on the NPS contract we had both the state and federal cycles and then the professional paper submission and annual meeting cycle as well.  So the first year I always just was kind of going with the flow not as prepared as I would be in future years once I learned the 'rhythm'. 

This year with Lumigrate I really have attempted to lay down something in advance to be in place for what I foresaw as potential and likely needs as people (a.k.a. 'traffic') are coming increasingly to Lumigrate.com in this past fall season.  I've sought people out who I think would be an asset to the Forum area, encouraged people active on facebook to encourage others to come as well, and in order to get Lumigrate higher in the ever-important 'organic search' suggest and request others who want people to find us to create as many links from 'their place to Lumigrate'.  It's been fun to see the Search Engines find us -- it's kind of like knowing Santa Clause might be out there flying around and how he gets from there to here and have Norad tracking him!  Magic!

In my first holiday season as an OT, I got to see the disparity of involvement of family and friends with the residents and how the staff would do a bit more for those who didn't have as much family support.  There was an interesting mix of people who spoke Spanish, both in the staff and the residents, and I realized that those who spoke Spanish had an easier time communicating with the English as a second language staff and I thought "I'd better learn to speak Spanish before I need help".  I then learned how much care cost in a SNF and decided I'd aim to retire somewhere south of the United States as long as I was needing to learn Spanish anyway.  Have I?  No.  "Been too busy", but perhaps after I'm done listening to festive seasonal music I'll put the "Learn to speak Spanish" CD.  It will be part of the 'self work' that I focus on at solstice and the new calendar year 'time and space' that is increasingly difficult to 'carve out time for' this first year of Lumigrate, but I am doing that process.  I hope that 'maybe' inspires YOU as well.  ("YOU" is my kinda 'joke' related to the You model on the Home page of Lumigrate.com. I say that a LOT, because my health care is up to ME primarily and then I hopefully have a wonderful team around me -- provers, family, friends, coworkers, community that facilitates that, part of which entails communicating with others.  My new 'vocation' this year with Lumigrate!)  I continue to work to educate people to shift their budgets for time, energy, money to including more about health, and hopefully preventively -- foods, education, TIME -- prioritizing and setting a time to watch a video or read/study about health care.  It's more up to us than ever before!

It is a pleasure to be writing this for you to read here.  Every day for nine months I have been here and on facebook and sometimes more lately on Twitter too...  I have really tried to hone my skill at picking up on what's 'up with people' through this computer and Internet THINGY, remarking last night when watching the author of the new book "Googled: The End of the World as We Know It" that somehow I ended up developing for the last two years this online health and medical education website and transitioned to basically providing occupational therapy through it to people who are active and involved in their 'occupation' of their health care, as anything that occupies time is an occupation. 

I've worked with patients since 1996 as you might see in previous blogs.  To put that in perspective, the FIRST WEEK I was working, I came into the SNF (skilled nursing facility) to find the residents glued to the television and very upset because of the murder of Jon Benet Ramsey.  Since that was happening, I didn't maybe realize then how much gets 'stirred up' with people at the holidays, but I now have seen in the season that people really struggle sometimes.  They might have great memories of past times and now things inevitably are different.  Families come together with all the demands of the 'season' of baking, and giving, and going, and shopping, assembling, wrapping and receiving and ....... whew.....!  It can be like 'fuel on a fire'.  This clearly is a common thing, as all the comedy shows on TV seem to have something about it you might notice. For those with chronic illness,  as Lumigrate is pleased to have attracted in our almost 9 months to date, it is compounded.  Families might not understand the person's illness well enough, the person with the illness might not understand it either, and in order to 'teach' someone something, you have to 'really know your stuff'.  So I had hoped to have enough on Lumigrate by the holiday season to assist people who might be 'feeling the effects of the holidays' so to speak.  There will be links at the end of this post for resources within Lumigrate and I encourage people to write in the Forum area or below in the Comment area of this blog post and put links to resources YOU know of that might be appropriate now.  If you're following us on facebook and here, you know almost as much as I do about what's going on for people -- I might have a few private conversations and am 'chat central' sometimes, but I do then come and blog or add Forums in response, so YOU also can sense and respond to what's going on for people and have a part in the development of something special.  That is what I have really received this season so far from people  -- the feedback and Comments and posts that confirm that Lumigrate IS achieving what I set out to achieve -- taking what I was doing with patients 1:1 in my outpatient clinical practice 5, 4, 3, 2 years ago!  I literally made the decision to get out of that and into this at this reflective time of year I referred to here.

To think back to my FIRST YEAR seeing patients at this time of year, I had three ladies on my schedule before breakfast to get up and ready for their day, per my supervisor's scheduling, and one was a woman who never had children.  Since you cannot 'do OT' with three patients in that amount of time and ethically, legally, morally bill for it, I'd end up having the nurses aids step in and dress the patients if there wasn't time for me to properly do skilled occupational therapy with them, I'd come back at the end of my day of the other treatments, screenings, meetings and documentation, and work with one woman at bedtime because she wasn't ever really 'up to' doing OT in the morning due to pain, and in retrospect, likely depression.    The facility's nurses weren't very on top of morning medications and I hadn't yet learned that I needed to call from home and remind them to medicate the patients I was going to be working with in an hour.... again, those things you learn in your first year with something new. 

I remember this woman well -- she literally WAS my first patient of my career post-internship, at 5:30 AM on 12/24/96, I believe.  13 Years Ago today.  She told me one evening in January, as she had noticed I was there at 5:30 AM and 7:00 PM and working with other patients in the dining room for all the meals too, that she regretted not having children, as all she had for family was a brother who was also now elderly and unable to come visit her in the SNF.  She very strongly and sadly imparted to me her recommendation that I not do as she did.  That did not happen for me -- in part due to my health 'issues' back then, in part my career moves necessitated by Medicare upheaval in the late 90s and what my family priorities rolled into whatever time and energy I had left.  But I believe you don't 'get out of' the major lessons of life, and as my OTR friend in New Zealand IMed the other night on facebook -- "it's your baby".  Emma-Kate and I were discussing how to build a Forum area for us to collaborate and bring discussions about occupational therapy for other OTs, medical providers, medical industry affiliates, and most importantly consumers to read and learn and write and learn.  We plan to start with chronic fatigue and fibromyalgia as those are concepts we and most of Lumigrate's participants are interested in, and then expand it as the website continues to grow out. 

At the time I 'got into this new game of OT' I was 36, just starting a new career in a new city where I had many friends from growing up all into their careers and relationships, some with small children at the time, and they still ALL are there, all of them with at least one parent still living and children who I am 'Aunty Mardy to' I am proud to say. But I had befriended one gal who was single at the time, and an international flight attendant.   (And BIG FAN of OTs due to a need in recent years that is how I'd met her -- perhaps she and I will collaborate and tell that story someday on Lumigrate.com, as it's a wonderful one which occurred at Christmastime 19 years ago I believe -- I'll have to check with her as she will know the date of her malaria and resultant amputation of her right/dominant arm.  YES, she returned to flight attending --- she's a little gal too and I just credit her with teaching me how one can persevere and succeed in a difficult career with a medical physical impairment.).  Neither of us were really motivated to 'go out on the town' on weekends as we were EXHAUSTED from our demanding jobs -- long hours for 'old ladies' in their late 30's.  <grins -- we're now average age 50+>   She was one of THREE gal pals, all 39, who married within two months of each other about ten years ago.  I had a streak of THREE close relatives and friends die within two months of each other a decade or so before that as well.  "Funny how these things happen" we all say.  I believe we all have to keep our heads, hearts, minds open and receptive to what is going on around us and work in with that and go with the flow while also swimming in the direction we have our sights and it's a combination, just like swimming in the sea. 

She and I actually never went swimming in water in those couple of years we lived near each other in Denver, but we did our best with our RnR time meeting at the Starbucks that was mid-way from our homes and then go biking, rollerblading, snowshoeing, hiking, etc.  I'd always thought when I lived in Fort Collins and knew she'd 'work' once a week (doing international) that she had it so easy, but once I was around in town and realized she had to do all her shopping, home-work, appointments, bookkeeping -- life maintenance -- in those days she was back, plus there was the constant switching of times and 'jet lag'.  She still works in that industry and has married and moved to another city so I haven't seen her in over 10 years but facebook has helped us keep in touch. She is among my friends there -- along with another 2,000 or so now, which is cool. I appreciate each one that I have the pleasure to interact with 1:1 too.   I cannot imagine how she does it, probably because I'm just not 'up to' that level of exertion YET, and I've been as much a car and motorcycle traveler as she has an airplane, or what I call 'tin can with big engines and wings in the sky'. 

I'd better "get up to speed", because Mr. Kesta of the Chronic Pain Educational Documentary Series has prepared me in the conversation when he asked me to be one of the first segments due to the criticality of what my 'thing' is (an expansion of the YOU model on the home page, getting patients and providers shifting responsibility and power to the patient/consumer and off of the provider/doctor etc.).   Just like movies, promoting a TV series or a business such as Lumigrate requires being out and about presenting, at events, 'getting the word out'.  To be honest -- I look forward to it.  And if my slightly older gal pal can do travel still, serving and moving people around in international flight travel, I can do it.  Like her, I'll have to do things differently and 'adaptive equipment' and 'compensatory strategies' will be involved, and once again, she serves to be an inspiration. And what does he want me to focus on, you might ask?  Exactly what I opened with -- shifting people's paradigm to investing their resources of time, energy, money and hopefully prevent or alleviate health issues in an effective and more efficient way. The results will be more people being in 'chronic wellness' instead of 'illness (which 45% of Americans now are)', and ALL that comes with that individually and collectively as a society and world. 

Why do I say this is a situation I am happy to be faced with now?  I've had fibromyalgia this whole time! Diagnosed finally after a couple of years which luckily brought me to Western Colorado for a two month temporary fill-in which wasn't my preference, but at least a progressive MD that knew what it was and how to treat it started my process of labeling the problem so that I could go on to fitfully manage it.  But in 2009, some of my medical professionals on my health care team who also are part of the Lumigrate team seriously OR slightly teasingly say they think I don't have fibromyalgia anymore, as they also see me buzzing around doing my best to gather their information to bring to YOU as well, which means events, meetings and a schedule that works out overall but some days is kind of challenging.  Sometime I do, some days I don't.  Today I do -- I hurt in a lot of those little spots and I am feeling the effects of the extra demands of the season and this first year of Lumigrate.  Which I kid you not, has been stressful.  AND (not 'but') sometimes I don't .. and THOSE days are outnumbering days like this.  And despite my body reminding me I've done things that it wasn't too happy about, I'm very much enjoying this day and season and wish that wherever and whatever is your day today, you acknowledge the overall and monitor and then focus on the positives and look where you want to go and aim in that direction and I hope for us ALL that we go where we intend. 

So I hope those who take the time to read this consider spending some time reflecting at this time in any quiet moments they might have.  Know that many right now have LOTS of time to think as they are not able to be out doing and going as much as they want, and are the ones particularly turning here for support and education.  (Time, energy, money = "resources" in my Lumigrate model, remember).  I hope that my spending some of my resources today on this has been effective -- just like most, I'm juggling today!  Just as the author of "Googled" said: people are paying for Match.com and other services and nobody is sure what the future of the internet holds for free versus fee-for-service, but it seemed to me that people would value spending $20 on valid, progressive videos that could lower their health care costs and increase their well-being and not have anyone else involved that they would have to wonder if the content was 'honest' or 'biased based on who is behind supporting the website'.  Doesn't it just seem so simple that if people paid for the information they receive like a loaf of bread it would allow for less attorneys, accountants and overhead that gets passed along to the consumer?  We found so far that it is time that is holding people back in most cases, only sometimes the $20, and will look forward to 2010 and how things progress as we work to accommodate from where Lumigrate is today.

Again, please Comment here if you have other resources for people who might be having a difficult time with the season.  I tried to direct people on facebook who live where I do to the very upbeat Folk Waves special edition on our local public radio station -- positive stuff!  It's the little things that can add up!  I've asked many people who follow Lumigrate to get involved in writing in the Forum area about their area of expertise, and they are pretty busy now too but I presume we'll be seeing some really neat stuff appearing once the 'season' settles a bit.  If you have time now, please write if you want. 

Lastly ... since it's the time for gift giving, as thanks for the gift of time and expertise and support people have shown this first year of Lumigrate.com, to show my thanks to everyone who has contributed to Lumigrate's Forum area and others who have 'off the site' I believe we have enough coupon codes that EVERYONE who has written or will write in the Forum area before the end of the year can receive TWO complimentary downloads for one of our five $20 video classes/seminars.  (Those will be issued to those who contact me and after you have watched the free videos (they are a total time to watch as an average movie).  Why TWO of the same?  So that YOU can GIVE something ... the gift of Lumigrate's health education .... to someone else AND then hopefully come to our Video Discussion areas (which will go hand in hand with the gifts in the coming weeks.  We got the party started and the kinks are out, the experts are lining up AND yesterday I had my first request for assistance with paying for medications yesterday at the same hour I had told someone that in the past my medical bills were about the SAME dollar figure as the writer yesterday reported.  That unfortunately is the cost that comes attached to MDs that know how to get fibromyalgia turned around and the way insurances and pharmaceutical costs are right now.  I know I found how to reduce the costs to my and my insurer's 'pocketbook' and I hope to be part of more collaborative efforts to find solutions for all. 

Ho, ho, ho we go!  Lighting the Path to Health and Well-Being.  On the back of our business cards, the more expanded mission statement reads "Giving each person the light of knowledge to illuminate their own path, empowering them to become their own best guide to health and well-being".  It is time to revise other details of the cards but I am thinkin' that which we composed many months ago still fits.  I'd like to know what YOU think.  And for those who contribute to the website's Forum or who have, contact us there or on facebook when you've gotten those freebies watched  ~~ Dr. Young's talks about the law of the lamppost -- and the graphics artist provided a lamppost for the video, which you will receive in the free video download (two links come in an email to you).  That was something he talked about in our live forum over two years and and is carried forward in the 'light' concept in the logo, motto, mission.  I hope watching him and Dr. Lepisto has the same positive effects on YOUR health and education as they did me this 2-2-/1 years ago now.  Again, FREE ALWAYS to ALL.  That's been our gift to anyone in the world since the day we launched... March 27, 2009; 9:50 a.m. MST.  Glad we found each other! 

~~~ Mardy ~~~

LINKS:

Yenta is a wonderful resource and has been a popular addition since Thanksgiving weekend for FUN and thought-provoking concepts about the 'holidays': Link:

www.lumigrate.com/forums/collaborative-care-discussions/spirituality

What I spoke about and the Documentary kickoff event in July in Berkeley (with links to to Series' website) and lots of other related information: www.lumigrate.com/category/tags/health-care

THE VIDEOS ... FREE ones say $0.00 as price, the others are $20.  All are watchable unlimited time.  Come with handouts too.  www.lumigrate.com/catalog/seminars (if you aren't confident about downloading a video there IS a blog about it -- just hit the purple Search tab in the top right corner of the screen you're seeing now after entering key words about what you're wanting to have help on 'video' in this case.  You will see a box in green that contains top Internet results for 'video' and Lumigrate cannot be in that space until we're on one of the most trafficed on the internet, and we're not there YET, but below that (green words) are the results for that word within Lumigrate.com -- you'll see the blog near the top of the list for within Lumigrate's results).

And maybe the most needed for some for last: A little something I wrote up in the Psychology/ Neuropsychology forum based on something I saw presented by Cheryl Young this year about how to get from something 'bad' happening to you to 'letting go', as that relates to health and well being.  www.lumigrate.com/forums/collaborative-care-discussions/psychology/neuropsychology

Hope this helps!  As Yenta says ... 'It can't hurt'. 

(For those with chronic pain and fibromyalgia, please also focus on the Forum / Fibromyalgia area -- there are many wise and wonderful people contributing there, some in particular about family stress, grief and the holidays.)