It's been a little over a year since I started tracking my "Level 10 Life" and I thought it was time for an update. I think I've been improving my life in the last year, so it's interesting to see it graphically represented.

Companions - My goal this year was to cultivate closer relationships with my core group of companions. Between #gradSchoolSucks, chronic illness, weight loss surgery, and other demands on my time, I haven't spent as much time with the people I care about but I think it's been a little better. Progress, not perfection, right?

Romance - The Mister continues to be the most awesome mate for me. We had our first real honest to goodness fight recently, and I'm frankly impressed with the way we recovered from it. I have never been with anyone where we were able to be painfully open and honest about the things that drove the fight (because it's rarely about whatever the fight was about) and end up closer as a result. He's awesome, and we're awesome together.

Health - I did one of the best things I have ever done for my health last year, with the weight loss surgery. I've had some rough spots since health-wise but it remains a really good decision, I think. I'm able to move easier than I could last year and I just overall feel better, even when my chronic illnesses are fighting me. I gave myself credit for that, but there's still a lot to be done. I just signed up with Good Measures which provides consultation with Registered Dieticians who are experienced with bariatric patients. Had my first consult this morning, and am really feeling good about this step as well. My goals for the next year are to improve the quality and variety of my diet, and get back to working out reguarly (including weights) so I also need to get enough protein in to support muscle gain.

Environment - We've de-cluttered quite a bit, even though you can't tell right now from all the boxes piled up in my front room right now. I haven't posted about it here, but Munchkin ended up moving home after the roommate situation went WAY south. She'll be here for a year or so pursuing her career goals and building up a financial reserve for her next foray into independence. So a lot of the decluttering and home maintenance has gotten set aside, but there's still some improvement.

Career - I've been increasing my responsibility and skill set at work, and will graduate this December with my master's, so I'm doing good in this arena. Next year will be focused on finding the next job, if that's in the cards.

Finances - Haven't managed many of the financial goals, but we did buy The Mister a used truck for cash, and paid off my jalopy. We're doing better than just treading water, but there's still a long way to go on this. Re-committing to YNAB again.

Personal Growth - This is completely stagnated while #gradSchoolSucks. I don't have the bandwidth to do much here. I do want to start journaling regularly again, and grad school ends in December, so that'll be when I can really start moving on this area again.

Spirituality - Pretty much the same response as for Personal Growth. Not a lot of time to focus on this.

Recreation - Ditto.

Giving - I'm still medic-ing for the derby league, and really enjoy that. Nothing else has really changed, but as with Personal Growth/Spirituality/Recreation, 2018 will be my year!

So in summary, some forward progress in the areas I prioritized this year through WLS and Spoonie Life, and still lots of room for improvement.


Picture from the No Body Shame website

I have previously talked about my struggle with the cognitive dissonance between wanting to support/promote/embody body positivity even though I have had WLS.  Cognitive Dissonance

My news feed this morning sent me to Dances With Fat, specifically to a post talking about not allowing weight loss talk in body positive spaces.
Do Body Positive Spaces Have to Allow Weight Loss Talk?

And this led me to another post by the same person about Weight Loss and Size Acceptance

These two posts got me to thinking hard about body positivity and weight loss, specifically weight loss surgery. I don't want to think that I am not an advocate of body positivity. But the Size Acceptance (SA) community, the Fat Acceptance (FA) community, and the Body Positivity (BP) community seem to have a blanket exclusion for anyone who wants to change their body size/shape, regardless of the reason.

There are two separate issues I identified with the articles linked above - speech and behavior in SA/FA/BP spaces, and where people who want to change their bodies for whatever reason fit in the movement.

I agree that SA/FA/BP communities need safe spaces in both internet space and meat space, away from talk about weight loss. I totally get that and wholly support it. I don't expect to go into SA/FA/BP spaces and say or do anything that sends the message that people of size need to change themselves. It's their space, and they establish guidelines for speech and behavior in order to protect the other people in that space. It would be pretty rude of me to go in there and say that people are okay at whatever size but that it's still better, for me at least, to be smaller.

Then there's how people who have or want to lose weight fit in the SA/FA/BP movement. I know a lot of people through my WLS support boards who got fed up with their body and size and looking "better" is their primary motivation for weight loss. That's totally cool, and I consider that as valid of a reason for weight loss as any other. But I'd have a hard time saying that they promote body positivity or size acceptance.  They can advocate against discrimination and bullying of people of size (and most do), but when aesthetic reasons are their primary motivation, it doesn't mesh with the ideals of body positivity.

Then there are people who share my mindset about weight loss. My primary motivation is my health, period. If I could have affected the health improvements I have had through WLS through any other means, I would have done it. I wasn't all that unhappy with my size, and would never have done anything this radical just to fit in smaller clothing. I am finding myself thrilled with some of the superficial changes, but they are absolutely secondary (or even tertiary) to my health goals. I had WLS *because* I love myself.  But the SA/FA/BP community doesn't just want me to respect their need for safe spaces without diet talk, they want me to believe that I'm not SA/FA/BP because I want to be healthier.

Therein lies the problem for me. One woman commented  that she needs to lose some weight because the fat itself is impeding her from being able to take care of herself. Her lymphedema (extreme swelling of the extremities) requires her to compression wrap her legs and she's unable to physically do it because of the amount of belly fat she carries. Her health is impaired by the fat itself. It's not a theoretical exercise of whether fat people can be healthy, or if losing weight really leads to better health. Her fat keeps her from taking care of herself. She doesn't care about fitting into smaller clothes or an airline seat, she needs to be able to move well enough to maintain her own hygiene, dress herself, and take care of her medical needs. Yet the author's response was that losing weight is never permanent, and the commenter needs to focus on accepting herself where she is.

As a nurse, this kind of one-way thinking horrifies me.  Hell, as a rational thinking human, this horrifies me.

Yes, the evidence shows that diet and lifestyle changes are rarely successful long-term. The evidence also does not support the idea that being overweight automatically means that someone is not healthy, or that someone who is thin is automatically healthy. Weight is not the only factor in health, and it needs to stop being treated as if it is. The overweight patient with an ear infection needs treatment for the infection, not to be told to lose weight. The overweight patient who tears a major ligament in their knee needs surgery and physical therapy, not to be told there's nothing to be done until they lose a set amount of weight. Shaming someone about their weight is counter-productive. No one should feel bad about themselves because of their weight/size. And frankly, if you're not part of that person's medical team, their weight and size is none of your concern.

But when the excess tissue ITSELF is causing health problems, it is irresponsible to maintain that the person should do nothing about it in the name of SA/FA/BP. And some health conditions, even if they are not directly caused by excess weight, can be vastly improved by losing weight. It is irresponsible to tell a person that there is no benefit to losing weight because it cannot be kept off. Shaming a person for wanting to better care for their body should be completely against the tenets of Body Positivity. That person is not saying other people need to make the same choice or preaching that her size is unacceptable. She is saying that she - and she alone - needs to try to do something in order to maintain or improve her health.

Interestingly, when doing a little research for this post, I found that the Health at Every Size (HAES) curricula does not, in fact, teach that everyone is at the size/weight they should be, and instead states that many people have weight-related health concerns. HAES advocates learning to eat intuitively and physical movement to improve health. The difference is that HAES wants people (especially medical professionals) to start looking at more health indicators than weight and de-emphasize weight as a primary health indicator.

Here's what I believe. People of all sizes need to learn to love their bodies and quit buying into society's media-driven image of what beauty is because diversity is beautiful.  People who don't fit society's warped view of an appropriate size/weight suffer a great deal of discrimination right now. Size shouldn't impact your ability to get a job or raise or promotion. It shouldn't impact your ability to exist in public spaces (doors, chairs, etc.). It shouldn't be the only thing medical professionals look at, and it absolutely shouldn't be a determining factor in treatment decisions. Fat is not a moral failing, and it shouldn't be treated as one. Fat people aren't lazy, and they are not fat because they have no self-control. No one should be harassed or bullied in any fashion because of their size. In fact, someone's size/weight is none of your business unless you're on their medical team. Even then, the person deserves nothing less than professional and compassionate care.  Diets don't work and are very damaging to health.  Weight-cycling is more damaging to someone's health than being overweight alone.  Basically, I believe almost everything that the SA/FA/BP groups purport to believe.  The only point I differ on is the exclusion of people who have reasons to need to change their body.

So I'd like someone to educate me as to why I have no place in the SA/FA/BP movement. Because I just don't get it.

I haven't as yet posted much with the Politics tag in this blog. There's been so much going on in my life with #gradSchoolSucks and WLS and living with rheumatoid disease, that politics necessarily took a back seat. The political climate has certainly changed over the last six months, and I am finding myself getting more and more vocal about politics in every arena as a result.

I'm a progressive liberal, and I'm not ashamed of it. Despite what many may think, this is NOT contrary to being fiscally responsible, or to having personal liberty. I also make a distinction between progressivism and liberalism. David Sirota in his blog "What's the Difference Between a Liberal and a Progressive" (http://www.huffingtonpost.com/david-sirota/whats-the-difference-betw_b_9140.html) states the following:

[...] there is a fundamental difference when it comes to core economic issues. It seems to me that traditional “liberals” in our current parlance are those who focus on using taxpayer money to help better society. A “progressive” are those who focus on using government power to make large institutions play by a set of rules.

To put it in more concrete terms - a liberal solution to some of our current problems with high energy costs would be to increase funding for programs like the Low Income Home Energy Assistance Program (LIHEAP). A more “progressive” solution would be to increase LIHEAP but also crack down on price gouging and pass laws better-regulating the oil industry’s profiteering and market manipulation tactics. A liberal policy towards prescription drugs is one that would throw a lot of taxpayer cash at the pharmaceutical industry to get them to provide medicine to the poor; A progressive prescription drug policy would be one that centered around price regulations and bulk purchasing in order to force down the actual cost of medicine in America (much of which was originally developed with taxpayer R&D money).

Let’s be clear - most progressives are also liberals, and liberal goals in better funding America’s social safety net are noble and critical.

I realize that this puts me in direct opposition to my friends and family who espouse Conservative and Libertarian ideology (both Big-L and little-L). I disagree that the solution to every problem is "remove the government from the equation" and let people sort things out without government interference.  But that doesn't mean we don't have common ground we could start from.

I agree that there are numerous cases of government overreach (a town north of me is trying to impose building restrictions on people who live outside the city's jurisdiction) and government corruption (too many to list). It would be nice if we lived in a society where people could be trusted to do the right thing and the free market corrected all evils. History tells us that's unrealistic, especially when looking at corporations. A lot of the "government overreach" has been in response to egregious actions on the part of corporations. The Department of Labor and the Fair Labor Standards Act for example is rooted in a history of corporations horribly exploiting and abusing their employees. The classic libertarian response of "they can go get other jobs" doesn't wash, since corporations were able to reap huge financial benefits from the abuse and exploitation of workers too desperate to feed their families to go elsewhere.

I used to agree that it was ridiculous for people to have to go through the time and expense of obtaining a cosmetology license in order to braid hair. Until I got more information on the story from my stylist. Braiding hair seems pretty simple, but in actuality there's a lot of information that someone should understand before opening up a shop. Many clients have had irreparable damage because of products and techniques that are not only damaging to hair, but to the scalp itself. Those who set up shop in their garage or whatever don't have assets to cover the results of a lawsuit, so the injured clients are left with no remedy. Most laws have roots in people being harmed, and trying to prevent it whenever possible, even if the history and reasoning is not apparent to everyone.

In short, it all comes down to what kind of society one wants to live in. The lawless Wild West may sound romantic in bodice-ripping romances and old TV shows. I wouldn't want to live there however, because the reality is that people in groups tend to turn alll "Lord of the Flies". I don't want to live in that kind of society, where ultimately whoever is in power makes the rules and the rest of the people have no say in it, nor any recourse for the abuses of those in power. I see government as the only protection available to people in the society. Right now, corporations are the group in power and our political system has been bent to reflect the goals of corporations and the ultra-rich who run them, instead of protecting the people who are the backbone of the country. Abolition of the government "intrusion" into corporate dealings is the absolute worst thing that could happen in my estimation.

Does government need to be held accountable? Absolutely. Should government programs be held to a higher standard for economy and efficiency than they currently are? Absolutely. Are some government programs too far gone to save? Very likely. Does that mean that every government program should be terminated, and all federal regulatory bodies disbanded? No way, no how. Look at pictures of the air over Los Angeles from the 1960s compared to now.

Downtown Los Angeles smog photographs by the Herald-Examiner Collection (1968, left) and Gary Leonard (2005, right) courtesy of the Los Angeles Public Library (http://www.lapl.org/#photo-collection).

Federal regulations are responsible for cleaner air in LA, period. There's still needed improvement in air quality in many cities including LA, but the improvements achieved by the EPA and the regulations that preceded its establishment are directly responsible for the ability to breathe at least decent air in our cities. Right now the EPA is fighting to stay operational, as it's under attack by corporate interests. When did corporate interests trump (pun intentional) the health and welfare of the American citizens? The ideology that government is bad is part of what's allowing the EPA to be gutted, instead of fixing what was broken with it (and I admit there is plenty broken).

Ultimately, we have too large of a society with our 320 million people (Census Bureau, 2015) to manage with a Wild West mentality. Too many corporations are trying (and succeeding) to influence legislation to their financial benefit. And yes, taxes are needed to run the government. I'll write more about taxes in another post. "Taxation is theft" is a catchy meme, but it ignores the responsibility people have to support their society, because of the benefits they reap from it.

I want to live in a society where everyone truly can become whatever they want to be. That requires everyone in the society to have a certain amount of safety net. People who have security in the lower 2 levels of Maslow's hierarchy are more able to contribute positively to society. Meeting those needs is a lot less expensive overall than dealing with the negative consequences as a society for not meeting those needs. A healthy population is one that enhances the GDP and drives the economy, not a sick population with a bunch of really wealthy dudes at the top. A healthy population breeds innovation and discovery, because when people are secure in knowing they have a safe place to live, enough to eat, and healthcare they are able to build new businesses, experiment with ideas, and take chances that those scrabbling for a bare existence cannot. How many cures for cancer remain undiscovered because the kid who would have found it dies due to lack of healthcare and decent food?  Crime drops when people have options and safety as well.

So yes, I am in favor of universal healthcare. I've done a hell of a lot of research on the subject over the years, and as a nurse I've seen what happens to people when we don't have it. I'm in favor of providing safe places for people to live, and healthy food for them. I believe it's the responsibility of the richest nation on Earth to provide these things, and excuses as to why it can't happen are just that - excuses. In this current political climate, the excuses aren't even ideological -- they are for the benefit of oligarchs and corporations.

For me, this goes beyond ideology. Until people stop arguing ideology and start working together for common goals they can agree on, the corporations and oligarchs win. If you believe that the perfect society is one with no regulations, we could at least agree to work together to reduce the ones we agree are the worst. If you believe that the perfect society is one where people are free to pursue their dreams with no restrictions, we could at least agree to keep corporations and oligarchs from abusing and financially enslaving them. If you believe the perfect society is one where everyone is treated equally, but you disagree with me on laws for protected classes, we could at least work to stop the abuses that are currently happening.

Instead, the perfect becomes the enemy of the good. Because you and I don't agree on what the perfect society looks like, we fight about that instead of coming together and promoting the improvements we can agree on. The oligarchs and corporations win and we all lose.

I started writing this post today because last night divergent political viewpoints caused a huge fight between me and one of the most important people in my life. I intended to write about how politics adversely impacts relationships. I'll have more on that subject later. Right now what I want to say to anyone who will actually listen is that there is a common ground when we give up the extremes.

Please, for the love of our country and our future, give up the extremes and start looking for commonality.

 

<--- this pic is where I started

this pic is where I am now -->

I actually started this post back in March, when I was 7 months post-op.  Work, grad school (#gradSchoolSucks btw), family issues, etc. derailed my good intentions to start writing regularly again.

May 17 was my 9 month anniversary of surgery.  I met with my surgeon and my rheumatologist that week.  They were both very happy with my progress.

There are days when I wonder what the heck I did to myself. But they are few and far between, and usually right after I've eaten 1 or 2 bites too many, or eaten something that my sleeve disagreed with. Most days, I really can't complain, and would do this surgery again in a heartbeat.

My rheumatologist believes my rheumatoid disease (RA/PsA) is in remission.  She'll re-do all my bloodwork in August and see where it stands.  Right now, I still have some joint aches, but it's mostly minor.  I seem to have been right about the meds causing a thyroid issue, because all of the associated symptoms are gone.  I am now off my RA/PsA meds, we are tapering off the meds for fatigue, and I accidentally stopped the migraine prevention meds without tapering but didn't have any issues.  Since surgery, I have gotten off (or am currently tapering off) 5 medications, including all blood pressure medicine, the med for fatige, my RD meds, and my migraine preventative.

Back in March, I had to run out at lunch and get some new slacks for work. I had been able to get by through "shopping my closet" for pants I'd stored away years ago thinking "I'll get back into these someday". Well, someday came, and it's now long gone. Those pants from almost 2 decades ago had become too baggy to be respectable, so I took a chance on some lunch shopping.  I went from a 22/24 pant to an off the rack 16.  I couldn't find off the rack pants that fit the last time I was in a 16 as a teenager.  But now "curvy fit" pants are available, and they work for me, as I have a small waist compared to my hips.  I also didn't plan ahead, and did the shopping in 3" heels, without any issues.  That would have crippled me a year ago.

Now at the end of June, those pants are getting loose.  Not so loose that I have to replace them, but starting to look a little sloppy.  I'm now in an adult Large shirt from a 3X.  I bought skorts at Sam's the other day, which never could have happened when I was in plus sizes.  I have lost 102# as of right now.  My BMI is teetering on the overweight/obese line.  One more pound lost, and I will no longer be clinically obese.  I could stop losing weight right now and all of my docs would be thrilled.  But I'm not stopping.  I have another 30# or so to lose to get to my target weight, which I set by looking back to the weight I was the last time I looked and felt awesome.

I still haven't started exercising regularly again since the health issues of the winter/spring.  But I'm feeling good and it's only my insane time pressures with work and school that are keeping me from it.  I have a plan to ease back into the workouts so I can start rebuilding some lost muscle.

Life is pretty darned good from this side, I must say.

 

One of the symptoms common to many chronic illnesses is "brain fog".  It's a nebulous thing that doesn't sound like much until you're dealing with it.  Once you have dealt with it, you realize how debilitating it is, all on its own.  Trying to describe it to someone else is probably futile, but here goes.  Imagine being incredibly hung over, and being woken up out of the dead sleep of the hung over by a blaring alarm.  If you can imagine (or remember) that feeling of complete disorientation when your brain is refusing to make connections with what's around you and you can't remember where you are, or what's happening and you can't figure it out because neurons seem to be mis-firing... well, that's about it.  Except it doesn't clear up once you wake up, shower, and get some coffee in you.  Or it only partially clears and like the fog that hangs over a swamp, clumps together and drifts in and out throughout the day.  Yep, loads of fun.

It occurred to me to check my blog today, and I was shocked to see that it has been two months since I've posted anything.  Surely not!  But of course, yes it has.  It doesn't seem like it's been that long from my perspective.  But I've been slogging through the days with worsening fatigue and brain fog and hadn't realized how bad it had gotten.  I mean, I *knew*, but I didn't really *realize*.

True to my nature, I realized things were sliding the wrong direction, and I researched the hell out of everything.  I determined that I had all the symptoms of low thyroid, and had requested labs drawn by my doctor.  I've had increased frequency and severity of my migraines since mid-December, and have essentially quit trying to work out or do anything beyond what I've had to in order to get through life.  This 6-week session in school has been a disaster by my standards, as I'm currently pulling a high "C", and while I'm still effective at work it's been an uphill challenge for me and I don't feel I've been as good as I should.

My labs showed my thyroid factors to mostly be in the low end of normal, and my doctor sent me for a sonogram.  Which showed a number of very small nodules which are not concerning for cancer or anything (thank goodness) but my research turned up a link to a medication I've been on for a couple of years now for my rheumatoid disease.  Dr. B had indicated she wanted to try taking me off of it at our last visit to see if I was in remission due to my lack of swollen joints and good labs, but I'd been resistant to that.  Now that it seems to be implicated in continuing joint pain, fatigue, and brain fog I guess it's not a bad idea.  I stopped taking it last week, and I believe my fatigue and brain fog are starting to lift.

Of course, chronic illness is teaching me (the hard way) not to trust it when I start feeling good.  I view it with total suspicion.  Is it a trap or a trick?  Is it luring me into trying to do too much today so I'll be flat on my back feeling like a truck ran me over tomorrow?  Or is it for real, but removing the only thing inhibiting my rheumatoid disease going to grant me a few days of blissful normality before the spikes grow back in the arches of my feet and my hands start feeling the vices closing in again?

Hope and trust is what chronic illness robs you of.  Today's post should be one of hope and achievement that I've located what was causing my problem (most likely) and that I'll start feeling better again.  That I'll be able to re-join activities that I've been wanting to, and my quality of life will get better.  Instead my attempt at realism likely reads as hopelessly pessimistic.  I really am not a pessimist.  I believe that I'll navigate this chronic illness and find a balance for my life that works for me.  I just have quit believing that I'll ever see what I used to think of as "normal" again.  Which is a little sad, and that's OK.  I'm one who believes that if you constantly expect the world to give you roses, and it doesn't, the disappointment crushes you.  But if you prepare for it to slap you in the face and every once in a while you get roses, then you're delighted.  Maybe there's a middle ground I've yet to find.  We'll see.

Well, it finally happened.  Munchkin has flown the coop.

Shortly before Thanksgiving last year, Munchkin's dad (Ex#1) passed away after long-standing health issues.  As she dealt with cleaning out his hoard (seriously, I'd forgotten how much stuff that man could cram into a closet) she decided she would keep the lease on his duplex and her BFF would move in with her.  It's taken her this long to get the place liveable and get the bulk of his stuff cleared out in between school and work.

But this week Muchkin & roomie decided even though things aren't 100% ready, to start sleeping over there and get the rest done while living in it.  So I'm officially an empty nester.  Though my garage will be serving as a storage facility for Munchkin's overflow for the forseeable future, and she hasn't completely cleared out her room yet.  Hopefully she'll finish that out this weekend.  Her leasing company bans pit bulls, so the dogs will be staying with us, and I imagine Munchkin will still be a frequent visitor.  We'll just have to train her to text before she comes over so we can put clothes on.  LOL.

So it hasn't quite hit me or the Mister yet.  We'll have our hands full for a while moving our own furniture around and filling space back up, as we get used to rattling around in the house by ourselves.  I plan to take over Munchkin's old room and turn it into my office/craft space and we'll see how the rest of it comes together.  I think we'll adjust to it just fine, I don't anticipate being all weepy over my baby being on her own.  But you never know until you are actually dealing with a situation, right?  We'll see how it goes.

In my last post, I referenced my autoimmune disorder as 'rheumatoid disease' (RD) instead of calling it psoriatic arthritis or rheumatoid arthritis.  I'm going to continue using the terms autoimmune disorder (AI) or rheumatoid disease (RD) instead of PsA or RA because it better describes the disease process instead of just one of the symptoms.  The naming of the diseases by one of the symptoms has caused a lot of the public to be very confused about how serious these conditions are.

One of the biggest misconceptions about PsA or RA is caused by the word 'arthritis'.  Without getting too medical with you, the term arthritis basically just means inflamed joints with stiffness.  There are many reasons people get arthritis, and autoimmune conditions are just one group of those reasons.  People tend to think of all arthritis as one thing though, and so those of us with RD hear a lot of things like "my grandmother had that, and Tylenol was all she needed for her pain" or "your joints would quit hurting if you lost weight" or "I have that, and I take glucosamine and it fixed it".

It is incredibly frustrating to have RD and people continually tell you how to fix it.  It's even more frustrating when they're telling you how to fix it and they don't even understand the condition.  This is not your grandmother's arthritis.  Unless, of course, your grandmother had RD in which case you should know better.

I sound harsh.  I should apologize.

But I won't.

Instead, I'm going to offer some insight for those of you tempted to tell me how to fix my RD, imply that my pain isn't real or isn't significant, or imply that I'm suffering this just because I'm not trying hard enough to fix it.

RD is a systemic disease, and a malfunction of the immune system.  If whatever cure you're proposing had real merit, the rheumatologists and patient groups would be all over it instead of prescribing immune suppressing drugs up to and including chemotherapy agents.  So while gluten-free, paleo, nightshade elimination, yoga, magic supplements or whatever can help some RD patients, it is by no means something that will work for everyone.  Some of these, like certain supplements, are contraindicated with some medications.  Many RD patients are struggling just to get by and can't manage special diets or we've already tried them.

There is virtually zero chance that you would be the first person to suggest ANY of these thing to an RD patient who has had the diagnosis longer than 12 hours and access to the internet.  Please, for the love of all that's holy, keep it to yourself.

I know you want to help find a solution for your friend or loved one.  That's human nature.  Believe me, we want a solution.  But by the time we've heard that tumeric will cure our pain for the hundredth time, and either we can't take it with our current medicine or we tried it and it doesn't work, we just want to scream.  Same goes for every other "cure" out there.

You can absolutely help, though.  Until medicine or magic comes up with a real cure, we need all the help, love, and support we can get in adjusting to our new normal and managing our condition the best we can.  Be understanding when we can't participate with things the way we used to, or cancel at the last minute because we're out of spoons.  Offer tangible help when and where you can (and when we need it) in the form of preparing food, childcare, housekeeping, lawn care, handyman services, or just plain old companionship.  If you're a person who researches medical things, by all means let us know if you see a report or journal talking about a truly new treatment or breakthrough.  If nothing else, just let us know that you hear us, witness our struggle, and let us know you're with us.  It helps more than you know.

Winter is a hard time to be a Spoonie.  Well, it is for me, anyway.  Here in Texas, the weather is mostly mild, but weather fronts come through every few days and the temperature variances are crazy.  Yesterday it was in the high 70s, this morning it was in the low 30s and we'll have a high in the high 50s and by Friday it'll be in the 80s.  Even on medication, my joints don't know what to make of this insanity.  I woke up this morning incredibly fatigued even though I slept well most of the night, and all of my joints aching furiously.  Luckily, it's a work from home day for me, so I can wrap up in a blanket and turn the space heater on.

I'm still adjusting to the idea that I have a chronic condition and that my life will never be like it was before.  My brain stubbornly resists even thinking the word 'disability' even though I've technically had one most of my life, and now I have two.  Migraines run in my family and we all just live with it the best we can.  It's only after learning about my rheumatoid disease and researching about it that I've realized that it's really my second chronic condition, and yes, disability.  I don't know why I'm finding it painful and shaming to use that word.  It feels overly dramatic, and somehow minimizing of people with more profound disabilities.  I mean, after all, I can still get around, take care of myself, and hold down a job.  Where do I get off calling myself disabled?

Just typing that out, I find that I really, intensely hate the term 'disabled'.  I'm not disabled, dammit.  I have a condition, and one that imposes some disability, but I'm not disabled.  The distinction seems to be an argument about being politically correct, but I'm learning that it feels completely different to say I'm disabled versus I have a disability.  I don't think there should be a law about it or anything, but I think people who are impacted by something have the right to speak out about it and ask for consideration in the way people refer to it.

So yes, life looks different as a Spoonie.  I have to ask for accommodations at work.  Nothing huge, since I already have the ability to work from home, but I need to be able to use that as needed instead of on a regular schedule.  I have to prioritize things in my life, and some things just don't make the cut.  I can't burn the candle at both ends and then catch up on sleep a week or two later like I did when I was younger.  Something has to give.  Right now the top priorities are family, work, and school.  If I don't have the energy, cleaning and cooking don't make the cut.  I don't bounce back from illness and injury the way I used to, so I have to take an extra day or two when I've been sick.  I'm really having to learn to take better care of myself, because allowing one condition to flare up inevitably causes the other to as well.  The cascade of pain and illness costs are huge when that happens.

I've read articles by Spoonies who say their illness is a blessing.  I can't go that far.  What I can say is that there are beneficial lessons that can come from hardship.  Learning to let go of things that aren't as important as others and taking better care of myself are good things.  I won't ever be grateful that I developed rheumatoid disease, or migraines for that matter.  But I will figure out how to live the best life I can with them.

If you don't read the XKCD comic, you should. XKCD Duty Calls

I've been a "netizen" since the early days of dial-up AOL. I probably shouldn't admit that, since it reveals just how long I've been on the internet and thus how old I must be. For an introvert like me, the internet provides a lot of social interaction from arm's length. This has upsides and drawbacks. One of the upsides that I see is that it provides people with access to support groups they might not have access to in real life for many reasons. Over the years I've been involved with many online bulletin boards, discussion groups, message boards, etc. I like being able to talk to people all over the country and/or world who have similar situations, hear their stories, and discuss our accomplishments and challenges. I've had support in this way for various health conditions I've struggled with, marriage, spirituality, parenting, and many more.

So it was entirely predictable that when I started thinking about weight loss surgery, I'd seek out some online communities for WLS. I found one right off the bat, had some very positive interactions with some of the board and WLS veterans, people who had surgery and had kept their weight off for a couple of years or more. I got exactly the support I needed, shared experiences from people who had been through the surgery I was contemplating, and lots of discussion about the insurance process, all of the appointments needed, the surgery process, and much more. I didn't feel the need to go find another board because that one met my needs.

With my long history on the internet, I know that anywhere there are people, there are politics. When writing on the internet, you can't convey body language or tone so it's easy to misinterpret what someone is saying. People take offense easily, and cliques form. It's the nature of a community. There are always people who annoy me online, and I pretty much just ignore them. Some people engage in online battles for a number of reasons, and it can get messy. But for the most part, people work it out and you just try not to step in the mess. The board I'd found seemed to have appropriate, mostly hands-off, moderation and the veterans were a great source of information and inspiration.

I was warned that the WLS boards are full of misinformation and not always the best support for newbies, but I have a medical background and am pretty good at weeding out bad information. I don't have the time, energy, and access for in-person support groups, even though my surgeon offers them. I also offered my take on things as a registered nurse having done a lot of research into the procedure, because once you're a nurse you just can't help but educate people about medical issues.

As frequently happens, the board I was part of blew up with accusations of long-standing members bullying and terrorizing (yes, that's the actual language that was used) new members after months of tension originating from new posters who were not interested in actually changing their relationships with food and their lifestyles. They seemed to want the surgery to be a magical fix for their weight, without requiring any change to the way they eat. The veterans of the board were marginalized and attacked for trying to provide sound advice and experience, and accused of bullying when they would not coddle people who seemed to be looking for absolution and/or permission for poor and even dangerous decisions.

I'm not posting this today to rally up rebellion or retaliation. I'm not going to name the board in question. I'm posting this because a few people interested in or who have had WLS read my blog and I want you all to keep a few things in mind about online support groups.

Support groups can be fantastic. They can also be detrimental, even dangerous. It's up to you to carefully evaluate what you need and what you are getting from a group. No one is qualified to dispense medical advice in a support group. I as a registered nurse, can share some of my knowledge and research with you. But I cannot give you any medical advice. It's not legal, and it's not ethical. I don't know you, I don't know your medical conditions and history, and I don't have your medical record and treatment plan to reference, nor do I have orders for you from your physician to implement with you. Even doctors and nurses can have incorrect or outdated information, too. But the lay people are only repeating what they have read or have been told. Even more specifically, they are repeating WHAT THEY UNDERSTAND about what they have read or have been told. As a nurse, I can tell you that a LOT of people don't understand completely what they are told/taught by their medical professionals. Bottom line, take what they say, do your own research, come to your own conclusions, but for the love of all that's holy, LISTEN to your doctor and your medical team. Unless they are incompetent, they are the final say in your treatment and recommendations. If they are incompetent, find another doctor/team.

Piggybacking onto that, recognize that every doctor and team out there has a slightly different plan and set of rules. There are still doctors out there who will tell you that you'll damage your sleeve if you drink with a straw. That's malarkey. The reality is that SOME patients swallow a lot of air when drinking with a straw, and it can cause a LOT of discomfort in a new sleeve and for some people it never stops. Those people will be miserable anytime they drink with a straw, forever. Most people will have no discomfort, or it will only last a few weeks. But air in the sleeve cannot damage it. Just like you can't stretch or burst your sleeve by drinking too much liquid. You can make yourself miserable, but there isn't enough pressure to damage the sleeve, liquid will either come back up or go right through. But you'll have people online swearing that you're going to kill yourself if you drink with a straw. Or drink carbonation or whatever. Because they were told that by their doctors. Or they misinterpreted a short-term restriction as a forever restriction. The variations include post-operative diet progression plans as well as weight-loss diet plans. Some programs preach very low carb, others are more moderate. The one thing they all have in common is that you have to change your relationship with food, and the sleeve is just a tool to help with that.

Some online boards are run as a profit venture. For WLS, they could be operating a store selling WLS vitamins or protein supplements and foods, or they could have a business that coordinates surgeries out of the country. This is not a bad thing, because those are needed services to the WLS community. What it can mean, however, is that the motivations for the way the board is run and moderated is not about providing support, it's about profit.

Also, while it shouldn't need to be said in this day and age, nothing you put on the internet is truly private. Don't ever think that private messages are not accessible to other people, especially moderators/admins from the site you're on. You're trusting those people to preserve your privacy, and that's a mistake.

I'm not telling you to stay away from support groups. In person, they're usually moderated by a person from the surgical team who makes sure that the information is consistent with what that team teaches. Online, they can be a great outlet for people who don't have access to an in-person group for whatever reason. But they should never replace your medical team in terms of advice about what is or is not allowed for you at a given stage pre- or post-op. And it's easy for an online community to become an echo chamber, where dissenting opinions or criticism is not tolerated. If your online group coddles bad choices and reinforces them, it's not going to help you in the long run. A good support group helps you recognize when you're resisting the needed change and helps you keep to your plan to reach your goals. That often requires blunt critical feedback, and it's not always easy to take. But it's necessary. If you just want people to pat you on the back and tell you your poor choices are OK, stick to friends on Facebook or whatever.

Bottom line, don't let any group, especially an online one, replace your own common sense or the advice of your medical team. Having people support you with a huge life change like WLS is a good thing. Just remember what it is, and what it is not.

 Well, 2016 is finally winding to a close. My friends who are into numerology tell me that 2016 is a "9" year, one of endings and closure. They say that 2017 is a "1" year of new beginnings. I hope that's true. Because while there have been good things that have happened for me in 2016, it's been a slog of a year.

We've lost so many celebrities this year, and some of the losses have been hard. Which always feels odd to say. I mean, I've never met these people, and only know them through their movies or music or writing, plus whatever news and gossip hits the few media channels I frequent online. Why should their deaths impact me in any personal way? But the fact remains that it does. I think part of the phenomenon is that it reminds us that time marches on, and we're older than we feel. Well, most days anyway. And that Death comes for us all in our time. Sometimes before our time, it seems.

Many of the famous people who died this year were getting up in years, and had been in poor health. So it's not like most of the deaths were surprises. I mean, when someone who's in their late 90's dies, how is that surprising? Sad, perhaps, but surprising? It's the ones who were "so young" that always cuts most deeply. It reminds us that we're not immune. I've known that from a young age working as a Paramedic, and more recently as an ER nurse. When you see death regularly as part of your work, you have a very intimate sense that each day is precious. That sense gets numb sometimes, but it's always there. Deaths of well known people just alert the sense once again.

A friend posted this link today on Facebook, and while I'm not a Millenial, some things he had to say really hit home for me.

Simon Sinek on Millenials in the Workplace
https://www.youtube.com/watch?v=hER0Qp6QJNU

If you don't have time to watch the whole thing (but I highly recommend it), one of the things he talks about is how social media causes dopamine to be released, which hits the addiction/pleasure center of our brains. He is of the opinion that if you're sitting with friends but texting/facebooking/whatever on your phone with other people, you're missing out on some of the really incredible things that are supposed to happen when you spend time with friends. If when you wake up in the morning, your first action is not to greet your significant other, but to turn on your phone and check facebook, then you're losing out in your relationship. If you're on your phone while waiting for a meeting to start, you're not creating relationships with your co-workers through seemingly insignficant chatter.

That really made me stop and think. Evenings at home have my family sitting on the couches, watching TV together, but not really together. Munchkin is typically on her phone doing something with her friends. The Mister is usually playing a computer game and occasionally checking his Facebook. I'm checking my Facebook and other social media, or doing homework. None of us are focused on the TV show we're watching, and we're certainly not doing anything actually TOGETHER. That's not to say every minute of our lives has to be doing something as a group, but shouldn't some nights, some activities be more present somehow?

I have a group of people who are my tribe. They are more vital to my well being than my blood family in many ways. We get together in person all too infrequently, and when we do there is a technology device in virtually everyone's hands. We do interact and chat and catch up with each others' lives, but it's an intermittent experience. Someone will get a text from another friend and engage with that for a while, or possibly share it with the group, or get disinterested in the topic of conversation and check out with their phone for a bit. Part of that is because we're a tribe of introverts, but I wonder what it would be like to have a gathering where the devices were left in the vehicles, or even just in the bags, for an hour or two.

I know lately I've been feeling very disconnected from my friends and family. I don't know if it's the season, or the culmination of a hard year for everyone, or maybe the long-term effects of the technology addiction that Sinek talks about. Sure, we "talk" all the time on Facebook, but that just seems to be very superficial to me right now.

When problems brought about by technology arise, I'm a person who tends to ask if there's not also a solution that technology offers rather than a knee-jerk reaction to decide that technology is bad. Perhaps I need to see if some of my friends are interested in a group video chat or even just a one-on-one Skype on a regular basis so we're more in-touch than what Facebook allows. Maybe just more in-person get-togethers are in order, and technology can facilitate the planning and coordination. I don't want to sound like I think technology or social media is the bad guy. I'm in touch with friends who I would have never found again without social media, even if it's just the occasional update about how life is going, it's still nice to wave at them. I have friends who have moved away that I've been able to stay in touch with through social media, where we'd have completely lost touch without it. I think it's about finding ways that technology helps, and limiting the downsides.

So.

New beginning for 2017.

Makes me ask the question, what's REALLY important to me? What's worth the time and energy to start over and build on?

At this point in my life, I'm finding that it's about the people in my life. My relationships. I haven't been a good friend in many cases. I get wrapped up in my own stuff, anxious about talking on the phone (it's a weird phobia, I know), over-scheduled and stressed, and the first thing that goes is my communication and face-time with the people who are important to me. I think I'll catch up later, and then suddenly months have gone by. Relationships take work and time, after all. It's going to be up to me to figure out how to make that time and energy available.

But that's my priority for 2017, I think. Right up there with finish grad school. And get back to the gym. And start cooking more. And start journalling. And keep a cleaner house. And write a book. (Too much? Probably.)

It seems trite to do all of this self-analysis and "I'm going to change my life" stuff coming up on New Year's. Maybe it is trite, but it's also a collective threshold that our culture recognizes, so it's kinda built-in. Why not use it? Either it becomes a true "new beginning" or it's something that sounds good, and it's tossed aside by Super Bowl Sunday and at least it was a good blog post, right?