One of Our Long-Time Follower's Tale of Woe - She has Far to Go

I am so sorry that anybody experiences this or anything like it. The part which really struck me, and made me get in touch with the writer, who I communicate with on a regular basis, so I knew had been 'getting down' from the place she was at with her health, was about euthanizing animals but not people.  Having been, 10 years ago or so, at a point in my life where things were so bad I looked forward to death and I've coined the phrase "If tomorrow's going to be like today, I don't want to be here".  I have, even in the times since starting Lumigrate, had that feeling, and again, I am just so sorry that people have to go through this.  

I created Lumigrate for two basic reasons: I thought it was a good investment for my financial and professional future, and I wanted to have people 'out there' beyond my geographical area be able to 'virtually' get the kind of information I was giving people with complex illnesses individually from my occupational therapy office within a physical therapy clinic which was in a very large, modern (yet not progressive) medical building.  I brought the progressive providers in to talk, and there were a few in the building which I invited.  I knew that other providers and many people with chronic illness wanted to attend the presentations, but they were too busy or not feeling well enough to come.  Or they couldn't tolerate the heat, or the cold, or the brightness, or the dark.  When I say that when I'm speaking, people chuckle, but it was the truth!  

They also couldn't sit comfortably on normal, nice conference room chairs.  The conference room was in the basement and finding their way from the parking lot into the building, down the elevator and around the back hallway to the bowels of the building where the lovely, modern conference room was in the building.  One day/evening, I'd arranged for a psychiatric nurse practitioner who worked for Dr Chris Young, who you see here at Lumigrate in videos, forums -- including podcasts x2, and I'd sent a lot of patients to her or he had and to me too so we 'shared' a lot of common patients and they all were so thankful.  I thought "I wish I had the money to put this on a website" as the borrowed video camera next to me rolled along on it's tripod.  "How hard could that be?"  In my 20s and early 30s, I'd worked from the formative stages of a research project that went on to create the Clean Air Act Amendments of 1990.  Part of what I'd done was buy the equipment and staff the expertise for a video and graphics studio, and on a tight budget.  And now I've had all this experience as an OT and a person who has had chronic fatigue since I was working for the project and fibromyalgia since I was in OT school, and I was seeing both sides of this situation.  

At that time I was also seeing patients at my OT business, because I'd hired an assistant who was an upper extremity rehab. expert, who were coming in with SIMPLE arm problems, compared to what is being described, above -- people who were working for businesses and it was considered 'repetitive motion' through occupational health/workers comp.  Most would get better as you'd expect and others remained with an inflammation issue going on in their body.  They were hard working, compliant, dedicated workers -- one worked with disadvantaged children and had a family that recreated by doing archery.  Not only couldn't she participate with that anymore, she was having difficulties cooking meals and taking care of her family.  We'd say 'this isn't normal, go back to your doctor ask about this ongoing inflammation", and I'd even talk about my history with food allergy testing when my doctors years before had run out of ideas when they were missing the fibromyalgia diagnosis and coming up with potential MS.  I was basically teaching them what you see in the Lumigrate You model, which was drawn up in this same timeframe in it's draft form.  And I'd say 'go to your provider and ask him/her to pair with you in figuring this out'.  

And they'd come back to their next appointment with a prescription for pharmaceutical ibuprofen, 800 mg.  Great, so now you're going to get your gastrointestinal system more off, which affects the brain; I know this because I went down this route years before and thankfully had enough things happen in the right sequences ("luck" or "God", or .... ???) in my 40s, after the days I refer to, above, where I was not wanting to be alive if I couldn't get my health to a better level, and saw the need to educate people.

And unbenownst to me, that day/evening I was sitting next to a borrowed video camera thinking "I wish I had the money to do a website, how hard could that be?" there was a check in the mail that I had no idea was going to come to me from the estate of a relative who hadn't had children.  She had been someone who got behind the issues in HER field (PE pun intended) which lead to Title IX in the United State, which gave women/girls the same sports funding as men, or I should say 'equalized' the funding for male and female sports in schools.  

At that time I had no debt aside from student loans -- I'd worked my way from the brink of bankruptcy for a handfull of years, debt that had come from a combination of my illness affecting my ability to work sometimes on top of the devastation caused when the Medicare bone-heads changed how they paid therapy companies and clinics/providers, which had occurred just ONE YEAR into my career as an OT.  I'd put a lot of things on my credit card for two years when I couldn't work while in the program, plus the six months you're on internships and the initial summer when I had to take cadaver anatomy in half the normal time.  So I was going to use half of the money to start Lumigrate and half to pay off my student loans and have the savings a person should have.  

And as soon as I put the balls in motion to get out of what I was doing (which was barely making a profit despite that we were 'rockin it', things in the plan went awry.  The boyfriend/fiance who was a wealthy and wise businessman who had said 'I think you should do it, Mard, and you can live with me and that'll give you enough money to do it' had grown and insecure daughters who got things so messed up for us we broke up.  The doctor whose integrative medicine center I was going to see patients at for a consulting fee for 'health navigation' found a NP who wanted to do the same thing and would learn and prescribe hormones, and OTs can't Rx, so out I went from the way to earn revenue at that business.  My father's health fell apart at the exact time that the monies I had come my way were getting to where they'd only get Lumigrate launched. He  had always made it known I was to inherit his monies, and he had more than he would need to take care of his needs if he needed 24 hour care.

My dad had chronic fatigue when he was 18/19 (I had it at 29) and fibromyalgia which was never diagnosed; he was treated for chronic migraines throughout my childhood, and when I was a teen, his provider was going to take him off of the narcotic he was on and he told them he'd drive his car into the canyon if they didn't give him the narcotic; clearly he was not dealing with someone that knew what they were doing with his medical condition.  It greatly affected my life to have a father with problems like he had, and most importantly, it made life a real drag for him too.  When I was in OT school he was in his 70s and I was seeing balance problems, depression/inability to cope and in a way a failure to thrive came into the picture.  He would never let me help him get to the doctor to have that diagnosed; he did go to my PT and another time to a PT an orthopedic surgeon the neighbor had impressed him about, and both times he found reasons to stop going -- they hurt him.  He was 'conflict averse' and wouldn't tell someone he didn't want to come back and why, he'd just cancel and disappear.  So what I am saying here, in addition to sharing some of MY story, is that I've lived with this stuff my ENTIRE life.  

He had said if I needed money beforehand, he wanted me to have it.  I hesitated to do that, I'd actually gotten a full time job when I was 19 in order to 100% support myself, with the help of savings that was mostly from my mother's mom's funds that were left when she died.  My mom's mom had supplemented my family's monies before and after I was born for many years, as my dad had gotten out of the military and had trouble finding a job (10 months) being a bookkeeper, working his way up to being an international pricing coordinator and along the way getting a VP-ship offer at a major US corporation.  He was a VERY hard worker, a very dedicated family man and he accomplished a great deal DESPITE having all the medical issues we experience, and I believe that for much of my childhood he would have suicided if it weren't for having a family to support. As he got older, many of his stressors went away; my mother died, his mother died, and not only did they stress him out in one way or another, they had money stashed away that he inherited, so by the time I was at my 'darkest place', when I was about 40, he was in good shape financially.    

On two brief occasions in my 40s, he had helped me out financially -- when I was totally exhausted from working two years of a very difficult job and when I was starting my therapy business and got hired to do home health on-call, but wasn't yet getting a lot of hours.  In my exhaustion, which on top of the difficult job, included every other weekend driving to his property/home and taking care of whatever needed to be taken care of, including setting up meals for a week, as his hands, as is included, above, were unable to hold most things, I had fallen asleep in the two hours it took him to eat a meal and talk to me (he wasn't a conversationalist, he was a talker -- one way.  One weekend I intentionally didn't talk about anything about me to see what he'd do and he never once asked me one question about my life!) My sibling and her husband took care of the other half of things on their weekend and on those weekends I didn't go do anything with my friends as I had to do my laundry, shopping, housecleaning, meal prep.  I was literally having NO joy in my life for week after week, month after month.  But I had a job, and I was learning from it things that have been instrumental in what I've done since, including with Lumigrate.  When I woke up at the table, I was in the same position my mother had died when at the same table a dozen or so years earlier.  "I'm afraid if you don't quit your job, you'll not be alive when I die, so I'll pay your bills as long as you need to get to feeling better and find a new job."

It turned out that what he had that I'd see come on in his 70s at least, was a combination Parkinsons and dementia known as Lewy Bodies Disease. The dementia is different than Alzheimer's, which affects short term memory more than visual/spatial cognition; LBD affects visual-spatial orientations and process among other things, and memory also gets affected but not the way you think of typically with dementia.  He was losing his abilities with things like being able to call up a contractor and get a new furnace put in his house back when I was doing OT internships; I spent my one week 'vacation' between the two internships we are required to do getting a contractor to his house and a big safety cleanup done at the same time, since I saw the dangers of his many buildings and property in a rural, mountainous, snowy area of Colorado. So I'd helped him out a lot from that point on, I allowed him to help me when he offered, and I kept it to a minimum.  

So at the time I was getting out of my profitable (barely) OT business to get an office at the integrative center and start a website about what to do about fibromyalgia and other related conditions (which is now MUCH more, as I'm including aging and dying after the debacle of my dad's last years, brain injury/neuro -- it's really turning into a 'neuro' website as these are ALL such overlapping and interrelated issues), I also considered that I couldn't help him much when I was seeing patients 4 days a week and he was needing more help and wouldn't buy another place here in Grand Junction, as I'd originally presumed he would do when I moved here five years before.  But an Internet business would allow me to work with people remotely from his house -- I even installed a wireless router out there in the middle of nowhere -- like an 'internet cafe' .. LOL!   

His health fell apart three years ago, two days before Christmas.  We'd had a huge snowstorm so I got to the hospital after being in close contact with my family member who was there.  Unfortunately, she was not processing things well and when I had asked if a neurology consult was done, because he'd failed a swallow study and they were recommending a feeding tube and that made no sense without a neuro consult, she'd said he was getting 'every test there is and every specialist' because of his excellent insurance.  It turns out that she also had a medical problem that affects the brain and how it processes information, and either I was intentionally not made aware of it or it hadn't been discovered by her yet.  As part of the stress of the situation with my father, she ended up getting some professional input.  At any rate, between my father have mental processing problems, the attorney it turns out was almost his age and appears to me to have the SAME disesase, the family member with the issues she has and a few others who were on her team, I wasn't allowed to look at financial records, I was left out of meetings that I only found out occurred sometimes six months after. 

Why was this able to happen?  Because they either didn't study up about what the medical condition I have does or they did and wanted to manipulate things; but instead of telling the people in charge on his team, which included the attorney that has now extended into the estate attorney who got handed the case with the old, demented attorney couldn't figure out very simple things at the time my dad was dying and I finally got to be present and seen and heard, outward lies or lies of omission were made.  Last summer I was told we were getting ready to wrap things up so drove over only to find out they were going to implement a paragraph put in by the demented lawyer at a time my dad was so confused he couldn't figure out normal urination since he had been on a catheter from the time the feeding tube was put in and he thought it was all one thing, not two (in/out -- like wax on/wax off, grasshopper, this was 'fluid in, fluid out' (plus normal bowel stuff except when it's tube food it doesn't lend itself to 'normal' in that regard -- it was a LOT going on). And the new estate attorney had not been told that what I do with the monies is support myself and whatever needs Lumigrate has!  He'd been given the impression I was a money grubbing, entitled, crazy woman.   

I'd be lying if I said this hasn't 'gotten to me'.  But I did NOT let it 'get the better of me'.  I clearly have lost ground on my health improvements of the past years which lead me to want to bring the information about how to YOU -- the world through the Internet.  The financial 'roadblock' has lead me to not be able to know what lies ahead and so I can't do the things I need to do to make Lumigrate become an income source to me.  Websites of this sort don't make money for the first 3-5 years -- the # of guests/users/visitors -- 'supporters' need to get high enough and with people who will purchase products and services that they'll be advertisors/sponsorers.  OR we can keep things free that we already have but then add things that are a charge to people who can afford them, but I don't like that because it creates a 'haves and have nots', which is what's wrong with the societies that Lumigrate serves the people within.  

And I don't have enough money to pay for the out of pocket things I know my health needs to be at a functional level AND have insurance, so things are NOT ideal for me right now related to my health care, but based on what I know of many who have fibromyalgia that are in a 'bad place with it', they've not had the right medical attention for THEM, in my opinion, for a long time, and they are unemployed, underemployed, or on disability.  Some are in the process, which means they're homeless and living in shelters while the government's slow system scrutinizes, denies, then re-considers and hopefully allows for them to get a very low amount of money per month for them to live on.  They'll get Medicare/Medicaid if they're in the US, but in reality, what people who have fibromyalgia need are a mix of what insurance will and will NOT pay for, and so they don't have the money to even eat right, let alone purchase supplements and ... etc.  I went through this with the situation I just shared here; I had no money. None.  I ate up my stores of food, some friends were aware -- some weren't or were pretending not to -- and I'd get a good meal here and there along the way. When I'd go to help my father, I'd be so depleted on some things that I couldn't stop eating -- potato chips, I got into a bag of chips and my body just needed calories!  I've had the money since the time he died to take care of my needs, but that had set my system into such a backslide and change, I gained 50# and thankfully that has stopped now but it's not like I used to be where it would eventually just fall back off.  That has to do, I think, with the treatment's I am CHOSING to pay for out of my pocket every month with a DO and DDS which has gotten the area around the pituitary to have room to 'do it's thing', and I'm very grateful to have an extra $7/day to stash away and treat myself to that every month.  

My esthetician, who writes at Lumigrate, misses me as a client -- I'm happy to say we've become close gal pals too, and I'd love to have an energy-working, massage, facial with her, but that's not going to do me the 'good' long term that this work on my cranium/cranial field will.  Ironically, when my father was found on the floor almost dead and transported to the hospital, I was on her table treating myself to a pre-Christmas facial and heard my phone going off a lot but thought it was my boyfriend calling with the never-ending list of things the Southern boys were needing for preparing for his parents to come in on Christmas Eve, which I'd been asked to be there for and meet them.  

At that time, we'd finished recording the videos that I was able to get the time of the providers to give, and the website was being put together.  The wall of the studio you see on all the videos but Dr Young's was painted on a day I was supposed to be driving over and helping my dad as the other family that was burdened with most of it when he wouldn't move here was off to Australia for three weeks to 'rest up' because they saw that things were about to fall apart with him too. It was a communal building with a door that had to be locked from the outside and a security system so I couldn't leave until the painting was done, and it turns out the guy had balance / neuro problems.... so it took until 3 in the afternoon and so I drove over and arrived with Qdoba in hand at about the end of the window for providing dinner.  

Suffice it to say, it's been a LONG three years; Lumigrate will celebrate it's third birthday of going 'live' in late March (of 2012) and I am still as committed as I was to having it be here with the information it has on it, and growing that information in the direction of the needs of the followers.  When I see something like this piece, above, I am even more committed to it: My family didn't 'agree' with how I was spending the money that was coming to me through the inheritance of my dad's beloved cousin, nor do they appreciate the people who Lumigrate is helping because -- I'm the only one that inherited his genes for fibromyalgia and chronic fatigue.  

They've had different lives in their profession, which gave them continuous employment in the government and benefits; they've never had ongoing medical expenses.  When I was at that horrible point where I could barely function and didn't want to go on with life as it was, they weren't coming to help me, and they've even criticized me for not having done enough/my share.  And when a person with that kind of understanding and place of ugliness is put in charge of matters, it's really hurtful and harmful.  It has harmed me and what I have been able to accomplish in timeframes that were available to me -- I'd set up meetings and do projects such as a marketing review in preparation for firing things up another level by hiring the professional firm I need to take things from here, and then ........ nope, the blockade happened. And to do it by using a paragraph/clause in a will put there by a man after he had an incorrect dementia diagnosis and mis-medication which was making him wiggier than he was normally (which was pretty wiggy at baseline), with an aged attorney who clearly had problems -- it took him four months to make a very simple will revision and POA setup on a man who was THAT critically ill?  It's horrible to think someone would do this to someone in their family, but what can you do?  

For today, I chose to share my story with as much honesty and simplicity as I could, because today what I can do is to do that, here at Lumigrate.  To remind those who read why I have created Lumigrate and that you are not in this alone.  There are aspects of what was written above by the gracious and normally very humorous woman I hope to meet someday, and if I had a magic wand, be able to help provide what insurances do not pay for YET (in exchange for lending themselves to campaigning for health care reform in terms of what we NEED to get better or stay better), which I don't agree with in terms of my reality, but what she has written at the time was her reality and we need to honor and respect that. What I see her saying is "I am feeling like there is nothing I can do".  And that's a rotten place to feel you are.  I'm sorry that people, such as what I have relayed, above, do not understand and that those who could help us don't and sometimes do more harm to us.  And I'll keep working as hard as I can to change that.  I promise.  

And I hope that you'll be here to see the change in the world for people like us.  ~~ Mardy 

I dedicate this piece, my work on Lumigrate today that's in front of the scenes (there's much more behind the scenes, naturally), to YOU, that generously and heroically shared your innermost feelings earlier this week and inspired me to post it and do a response.  I hope eases your pain.  And inspires others similarly.