What happens when things just aren't going your way?

It's good to see you back, Candace, but I'm sorry to read about your fall and winter.  Knowing you live in New Jersey, I'd wondered how you were doing with the weather this exceptional winter.  It's ironic that you mention your uncle, as today is my 'Uncle' Pat's birthday!  When he was about that age, I was about your age, and he had a massive heart attack right around the time Reagan was shot, and I remember it really messing with my head.   He was one of the most compliant people I have ever seen related to learning and changing and he's outlived the predictions of his doctors then by about 20 years. 

Last night I was invited to join a Bunco group and while we were playing the conversation at my table at one point went to women needing to get together and share, and how research just came out about San Luis Obisbo being the happiest city in the US and that studies show having just one event a month to look forward to (bunco is monthly) improves happiness.  Women tend to reach out more to make support systems around them comparied to men, they're now realizing is some of the reason for longer lives for women.  I know you have a lot of family and I presume they are supportive -- hope so.  Often they are not.  I'm currently working individually consulting with a woman whose son is potentially not well education about what FMS is or he has some type of resentment and is passive aggressively and immaturely dealing with the stresses that fall to him by having an ill mother. I have a friend who apparently has spoken to someone who has an uninformed and negative opinion about fibromyalgia and what it is and isn't and can only imagine that your situation includes some people who might be adding to difficulties for you. 

I suggest focusing on the positives and identifying and remediating the negatives as much as possible.  In hearing about your getting a job and all you've described, I SO remember about 10 years ago when I had taken some time between jobs -- exhausted from a two year stint with a difficult company and job.  I got well enough to return to being an OTR in skilled nursing, which is extremely high paying in the medical realm AND had the promise of good insurance benefits after 90 days.  On a Sunday evening about dusk I inadvertently stepped in a pothole at a Chipotle parking lot and had a 3rd degree sprain to my left ankle -- bruised to my knee, swollen to about 2x the normal size.  But the job was covering for a young OT who had blown out a lumbar disk lifting a patient and I was the backup so I HAD to see the patients.  I was to work by 3 pm the next day -- could not find the type of splint anywhere the doctor ordered (my insurance made me go to the PC doc not the ER), so here I was walking on a bad ankle into WalMart and etc trying to find an ankle brace. 

The walking / limping/ compensation and pain threw me into a backslide with my health the way you described 'flareing' here.  I was fortunate the facility was carpeted/padded. My feet broke down into horrendous plantar fasciitis though ... I was miserable. (I was having the typical hormone anomolies with FMS and didn't have the money as the previous job was not well paying so I couldn't afford to get hormones as those doctors and compounded hormones back then were NEVER paid for by insurance (that's changing thankfully).  THEN my employer was having problems with the contractee liking the OT they staffed in another much harder to walk around building (stairs, tile floors -- the parking lot was way down the hill -- it was one of those old institutions that was a sanitarium for TB back in the old days, very rare for Colorado to have such old, big buildings.)  So they told me if I went they'd give me insurance BUT they 90 days later said they 'forgot' to put me on the policy and so I had to wait ANOTHER 90 days.  In the mean time I'm trying to 'right a wronged ship' -- the reason the previous OT hadn't fared well was due to the site superving therapist not being a good manager (or therapist, actually), and it was a really inefficient setup.  The supply closet for all my OT stuff literally looked like the worst 10 year olds closet you can imagine -- everything just packed in when it was done being used with no order to it.  They had me doing wheelchair positioning initially and I didn't ever have training in that and it's EXTREMELY difficult and requires years of experience to be doing the case they had when I arrived, which is why they were displeased with the other OT.  (Who had actually made the exact right recommendation they just didn't want to pay $2,000 for a wheelchair and thought it was her being a bad OT because they just didn't like her -- she was kind of a 'ice queen' -- always perfect hair and makeup, spoke very slowly and intentionally, moved that way -- wasn't a 'roll up your sleeves' gal like I am. 

I remember standing in line at WalMart looking at the bananas on the rack nearby and I just could NOT walk the 20 feet over and back to get a banana as a snack... and I was hungry, I'd worked all day.  That, to me is an example of how one thing causes the domino effect.  So after six months of this (going to PT 3x a week, my ankle's 'permanently' messed up they're realizing at the end of over 50 PT visits (and I was 100% compliant with my home program)(which by the way I didn't have the most knowledgeable PT even though she was the best one for that clinic, luckily I sat next to TWO at my next job who fixed me to 90% good as new) -- all the while I'm hobbling around the halls and staircases and hill to and from the parking lot far far away -- (think One Flew Over the Coocoo's Nest AND we even had a nurse who dressed in white dress and hat still who even the patient families identified as 'Nurse Ratchet' .. I had to walk past her to get to the Therapy office about 40 times a day -- it was 'literally' an insane situation!) and my 90 day wait is done so I fax to the self-insuring company's office my health insurance paperwork and they terminate the offer because I have fibromyalgia!  

So that means the next day, which was the first of March 2002 I believe it was, I'm NOT scheduled to work on call for them because I was to be full time/benefitted.  Which means the scheduler has to call and ask me if I'm available to work.  They offered me a $2/hour raise to stay on ... They must not have known me very well.  THEN since it obviously threw them into problems when they didn't have an OTR in a building of that size and complexity, they weren't happy and lied to Dept of Labor when I filed for unemployment.  Which I was denied because they had offered me work and I declined it.  BUT in my telling the investigator on the phone he started picking up on things they were doing that were illegal so they were investigated and found out of compliance with paying overtime at time and a half so EVERYONE for their whole history got backpay for their 50% of the 150% you are to pay therapists when they go into overtime.  I got $900. AND it gets better -- five years later I'm sitting at my desk working for myself contracting with a PT clinic and I get a call from this company's recruiter.  I said 'were you there about five years ago when.....' and she remembered the situation.  I said 'I'm THAT Mardy Ross -- I moved to Grand Junction.  I'll never work for your company in a million years BUT you do pay well and I'll tell OTs about you in the context of the whole situation in case they have different ethics" and she said 'I'll give you the bonus as if you were an employee of you find us people.'.  

I hope people who have the time and inclination to read this might for a couple of reasons.  Candace, I got through it.  I would be lying if I didn't say there were days after that which the only reason I kept going was because I had a dad who it would kill if I died before him.  Let's just suffice it with that.  It's when I 'invented' the concept of 'if ever day were like today would I want to be here for a lot of tomorrows' and if the answer is 'no' I start doing something different to make things 'tolerable'.  I hope it helps people to hear that BEFORE I found competent providers and got educated about what fibromyalgia 'really is' and what really can reverse the symptoms and the syndrome, I sat on the cusp of going on or not. My family was very small and my dad was quite old and ill and undiagnosed/untreated and so not only was "everyone" having to deal with him and not me, they were expecting me to do half of the support of him (and he was an hour or more drive from where I lived).  I was incredulous when one of those 'supportive' people said last year 'you didn't look so good and your home creeped me out'... Did nobody notice the changes in me and my home back then and say 'how do we help solve this issue'.  There were solutions, I needed people to help me find them.  A person is used to taking care of themself and so is the family around and I needed an 'intervention', in retrospect.  

I'm forever grateful to have been put in that place because after my next medical employment city hospital debacle (a whole other story) and only a few months without work, a company that had been AWESOME to work for between those two called me up and asked me to go temporarily to Grand Junction.  Just two months.  I literally could not see myself working 2 months full time.  BUT they called back after a few weeks and said the OT they sent was a mess and pleaded with me for 3 weeks, which I figured I could muttle through.  It was a decently little SNF, they'd give me a pay increase and pay the movers, so it seemed the thing to do.  That was hopefully my last employment debacle in medical -- I realized it wasn't me, it wasn't the city, it was the medical industry and chose to start my own business to provide OT to people.  And after that, in the building I contracted, the idea and people that got Lumigrate's concept swirling in my head came to be.

And now, three years after I called up Macintosh and ordered the computer needed for doing video and LOTS of it, I'm typing this to you and others from it.  I hope it makes a difference.  Candace, I know you are studying counseling and have a Bachelors in health education.  You're getting the lessons you need and maybe the OVERWHELM to force you in a direction.  If I hadn't gotten REALLY mad during days of being mismedicated and nauseous and unattended to with my hysterectomy, I'd not have created Lumigrate, I think.  I was lying there thinking of my sweet young patient with cancer who I had helped get appropriate mental health counseling to help him and his family transition from fighting the cancer and being nauseous to going with the flow and passing on.  I was able to do that through my connections and the generosity of the therapist who knew me well who worked on a sliding scale and said 'We'll be able to work it out, I'll see him no matter what, Mardy'.  But what about all the people out there who are sliding through the cracks? I literally felt the best way for me to fill as many cracks as possible was through a website which reached the public who would then help the providers to transition from the track they're on going round and round to new and more helpful ways of doing things.  For those who don't have access to providers, doing it themselves as best they can likely is going to be better than status quo. 

As an example, last night I worked with a client through email late in the night and they don't have funds to pay a driving rehab person for all they need to know so I was referring them to what Karen has written about driving on Lumigrate.  That should let them know what they need to know and if it doesn't then I can ask Karen to cover something she has not yet written about. Before that, at bunco, a woman was all fired up after attending a 'seminar' about ProArgi9, a MLM version of supplementation that is likely a VERY valid product but more expensive than it would be if purchased through something like ITC, our new compounding and wellness pharmacy 'partner'.  The woman even had been told the answer to the question of why it is good to buy from a company that it costs more from -- "because the people who cannot afford to buy it can sell it and then get it for free".  I said 'but who's going to buy the stuff from them if they can buy it for half the cost elsewhere -- yes, some will, but it's going to likely be a very few'.  So then I'm wanting to get something onto Lumigrate specifically about that because this MLM stuff is really a burgeoning controversy 'at' Lumigrate.

Anyway, I hope this response has helped you Candace, and I hope our overall back and forth helps many hundreds and thousands in the future who might stumble upon it and read. 

Remember, your mother will still love you if it takes a little longer to graduate with your Masters.  "Hiatus" is different than "Quitting".  "Dropping" can be a good thing.  I remember the first class I dropped when studying business and the way the instructor shamed me for it.  I was working 35 hours a week and taking 18 credits and didn't know I had dyslexia and was not doing particularly well in shorthand -- now WHY I was taking shorhand in college is a story related to unethical advisor with a sinking program if attendance wasn't kept up and an unwise mother who was representing my 'parental units' at new student orientation for college.  Why my father couldn't take a day off of work I do not know, it wasn't a priority.  But it wasn't many months later that the went on and I realized at the age of 18 that the adults around me were less knowledgeable and wise about what I needed than I was and I went off on my own financially.  It hasn't always been easy but at least I own it.  And I hope in my middle age as it goes into older age, I can really get past all the ramifications of the past traumas and dramas.  I strive now to have a very simple life, I only go and do a few things a week socially -- I keep my plate to the priorities that I have identified as the highest.  Sometimes, like the last year, things have been impossible to balance well but I do my best, I go backwards with my health but know that it's temporary and I can catch back up and then start setting my sights for new heights.  And I wish the same for YOU, lovely and smart Candace.  Sorry life's so difficult sometimes and I hope it helps to know we're all in this together in a way.  ~~ Mardy

Hey Mardy,

Thanks for the great feedback!... Yeah, it's definitely a tough situation all together and am trying to keep it together as best as I can.

It is just a "when it rains it pours" situation. As a result of getting my appendix out, my physical therapy for my knee got put on hold and it is regressing very fast. I think that when the warm weather gets here and stays here and I do PT again, I will start to feel better.

The weather was definitely tough on me this year and had an impact on me physically and emotionally. It was awful. We had 1-2 HUGE snow storms every week for about 5 weeks! It was nuts!

I will keep all you said in mind. I actually just finished a book called Have a Little Faith which has helped me keep things in perspective as well. I feel pressured to finish my master's on time because as a result of all the political stuff going on in NJ and all my health issues and everything else I feel that if I did stop or take a break, I probably would not go back and finish...

I am hoping that all the negative for the past year is gone and positives start to creep in! I just need to remember it is important to keep positive and try to be as happy and positive and not let my limitations hold me back!

Thanks for your input, I really appreciate it. You are very knowledgeable and it truly helps me and sure will help so many other people!!

-Candace

Candace, I find a few things you said VERY interesting. 

I have not had my best winter either, health-wise.  Fortunately it's not my worst either because I'd made such HUGE progress in recent years.  I was essentially being teased by my previous health care team that I maybe didn't have FMS anymore, because of all I was accomplishing.  They'd see my staying after seminars, lifting the chairs to put them away, etc, and I do cover a LOT of ground professionally -- I'm probably as active as a normal person my age now, just not 'normal for me' based on how I was before I got CFS/FMS, which was partly due to being a little Type A, 'ambitious', 'hard working', perfectionistic, etc.   So at least we're in this together, Candace, with millions of other people, unfortunately.  And we'll get out of it together if we keep holding onto each other. 

So this winter ... as well as the year I started Lumigrate, which was three years ago now, I could have selfishly retreated and nurtured myself.  Someone last night I went to dinner with who is just figuring out in the last year she has FMS and is finally getting the medical help that she needs (through the Lumigrate Mardy's List -- here in Forums under Health Communities), said 'by the time you take all the stuff you need to take and cook and eat the way you need to cook and eat, you don't have any time in the day to do anything else.'  I said 'yup, and so you just keep doing your best to balance and always look at your energy, time, money ('resources') wasters and eliminate them.  In her case I suggested a 'news vacation' and actually a 'television vacation' .. just for a week.  Why?  Because she really is doing better enoughso to start looking at foods and eating and I know that her habit is to eat in front of the TV, not mindful of eating, not thinking about what she's putting into her body and the relationship that has when it gets into her cells.  And I know she spiritually believes in energy and that what you think about affects your body too.  But overall my point in bringing this up is that I have the same sense you do -- the 'system' we're here to pick up the people from and help is crashing in the next year in my estimation and Lumigrate can't be helping people if I pull back for a while and do what is best for ME.  So I compromise and do as much as I can for Lumigrate and then take care of me 'enough' to get by. 

I also recall when I had my abdomonal hysterectomy being in PT for my neck at the time.  It doesn't add up to me, Candace, that the PT couldn't figure out how to progress your knee after you'd had an abdominal surgery adn the complications that come from having FMS too.  I had to have a different PT for my ear/TMJ problems for a week and then they started working on the muscles that had 'kicked off' due to the surgery in my abdominal area, then also worked on my neck still.  The way my insurance at the time was, it would have been awesome had they allowed more than 20 combined PT OT and ST visiting in a calendar year.  Luckilly my surgery was mid in December so I did 20 one year and 20 the next year; the doctors and PT all wrote wonderful letters for me to appeal to "Un__ Health" (not naming names, just a hint) to give me more visits but the woman I spoke with said they never have ever approved an appeal that she had seen in 12 years working there. 

That was also part of what made me 'get it' and pushed me WAY out of my comfort zone to start an online business.  (Candace knows from being on fb chat with me and getting her onto Skype for a conference chat that I'm way not technologically inclined.)

As I said -- we're in this together.  Thank you for having grabbed an oar Candace, with Lumigrate AND with your community and schooling.  I know you're going to have impacts well worth your time, energy and money.  So thank you, for that, as a citizen.  It's so wonderful to see people your age who are such contributors.  The son of my friend who was out with me last night I have a hunch is 10 years behind you in some way -- I can totally see him even jumping ahead to get involved in an organization now and after public school and before college just because of the timing of things.  His resonation is arround hunger and the underpriviledged related to food.

I wish you the BEST spring you've had all year! And I'm going to set you with something about the positive thinking stuff.  I have two resources who have agreed to participate with Lumigrate who haven't made it a priority to post yet so maybe by sending them what you wrote it will get them 'springing into action'.  

All puns intended ~~ Mardy

Mardy,

I am looking forward to what the new contributors have to say.

My PT is actually very good! Got me running again for the first time in 7 years! Only problem is, because of my internal stitches I am not allowed to lift more than 20 lbs and can only walk. SO she has me doing balancing and resistance but it is not near the level of activity I got up to! Which also is a reason for my feeling kinda "down" now.  It now has been four weeks since I have not done anything really physical --- even yoga --- so I do not have the natural endorphins any more! 2 more weeks until I can start being active again and that can't come soon enough.

I really enjoy hearing from people who are my age or close to it. It's tough going to school full-time, starting with your career, dealing with illnesses, especially those that occur in addition to FMS, among other things! It is quite difficult at times.

I put on a good show and can motivate others in my position, but sometimes I need the encouragement from someone else just to get that push get moving again! And that is why I am so thankful for Lumigrate, this group, and of course your help, Mardy!

As always thank you for all that you do. You touch the lives so many more people than I am sure you are aware of!

-Candace

I'm hoping there are no typos since I can't see through the tears welled up from that, Candace.  It's my honor, really.  I was talking with one of my private clients recently about how dangerous it is to compare one person's situation to the other because in reality it's all 'what it is to them'.  (And then I worked with her on some education about adverse childhood experiences and the brain mapping that shows what parts of the brain get affected at what age when trauma occurs).  But I know when I think about that you're exactly half my age essentially and so what was I doing when you were born and I was only starting to have the chemical sensitivities, pet allergies, weight gain to 150# from 125# and fatigue but really I was feeling fine compared to the whallop that happened at 29 for me.  And then again at 35 and since has been a constant battle.  "At least I had my teens and 20s".

In the Lumigrate way of looking at the 'continuum of fibromaylgia' and includes now TWENTY PERCENT of the US population, its to some extent the younger population that's markedly changing the statistics and therefore focus of how we 'do' Lumigrate!  So thank you for your candid and honest, sincere piece about the ups and downs.  We'll maybe call you Candid Candace!  

Glad the PT hadn't put you on Hold, that's what I thought you'd had happen.  Are you working at all with mental imagery?  Go to YouTube and the Lumigrate channel there and look at the Lemon exercise with Dr Paula King ... it's about the power of the mind to create reality in the body.  AND then you do know her video is now $0.00 for you and ALL to download and watch? An hour of time though.  That's where many people don't take advantage of it because they think 'oh, I'll do that another time'.  Kinda like I have my grocery shopping today but I've put it off long enough now.  For good reason!  I worked on this, which is so important to me -- you all are my #1 priority 7 days a week.  AND I posted the latest about the PeaceFleece going to Carolyn's Tea -- I hope it is a good story for people.  There's an element in it that I hope people come away with on how I was frustrated with things not happening as I had wanted and thought and felt and that it's really about riding the bus and going along for the ride because we're not the ones with the BIG control in our lives sometimes, as I see it.  (More spiritual 'stuff' -- might help, and as Yenta says 'it can't hurt!').  ~~ Mardy

Monday, March 21 --

It's a really springlike, blustery day here in Western Colorado and I have left a voicemail for 'my new best friend', and I hope he will be for many other people at Lumigrate.com, along with his partner Allan Jolley, also a RPh and additionally an ND. 

Between the two of them plus Becca, their NP, as well as my latest greatest MD, who is who sent my Rx to ITC last year and got me headed in the rightest direction for this type of expertise and advise, I have the highest hope for the followers of Lumigrate.com that I've ever had! I've given them the test of time and have gone and visited personally (see the PeaceFleece saga in the Fibromyalgia Awareness forum.)

Because they're available like a pharmacist is (Monday through Friday midday for those on the west coast, 2 pm for those of us in the middle of the country and 4 pm east coast) to give you fast advise about supplements and head you in the direction for hormone information and assistance. Additionally, for a very reasonable charge per hour they will consult with medical providers related to prescribing compounded medications, supplementation and that's everything from probiotics through vitamins and minerals and into chelation and paraside remediation).

Candace and Gary have something in common related to being 'in the shop' with your lower extremities this winter, but I'll let Gary share about that.    Gary King, RPh, Co-President, ITC Pharmacy