Author Archives: theantichick

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?

I know it's been weeks since I posted anything on this blog. The end of the year is always a bit of a blur for me, and this year is no different. Mea cupla.

Halloween rushes into Thanksgiving, and then there's a rush of birthdays and anniversaries for me before Yule gets here. Add in the end-of-term school projects and shopping/knitting for presents before Yule and people pestering me to start my holiday baking, and it's a recipe for craziness. I have one more school project due in two days, and then I'll be done until January 9th. So Saturday will be the start of my holiday rush and I can start catching up on sleep.

During nursing school, I thought I would never be so happy as when semesters ended and I could catch up on sleep. All I can say now is #gradSchoolSucks. In fact... https://twitter.com/#gradschoolsucks In many ways nursing school was worse, but grad school is right up there.

I have another year to finish my Master's program. Three semesters. Six classes. Forty-eight weeks of coursework. I don't regret deciding to go to grad school, but boy has it been a slog. I have so many things piling up that I want to do, and I'm tired of saying "I'll do that in 2018." But if I try to add things into my schedule now, I'll end up sick from the stress. Dare I say it again? #gradSchoolSucks.

In other news, things continue to go well after my weight loss surgery. I'm now about 3-1/2 months out, have lost 62 lbs, and am having wardrobe crises regularly. So far I've been able to avoid going clothes shopping, but that won't last much longer. I'm able to eat pretty much anything I want, though things with a lot of sugar and/or fat I have to be very careful of. I'm also still working on slowing down when I eat, because it makes me physically very uncomfortable, and the habit of wolfing one's food down is hard to break. I'm getting to the gym about once a week, and am trying to ramp that up, but #gradSchoolSucks.

My RA/PsA is doing much better now that I'm back on my meds. And while my inflammatory factors are still a bit elevated after the surgery, they're low enough that we are no longer considering biologic therapy, which is a good thing. We may still have to raise the dosage on my current medication and/or add in a second medication, but that's preferable to biologics if it will work. I finally ordered a splint for my thumb that has let me get back to knitting. My blood pressure is back into normal ranges after we stopped the medication, so all of the health indicators are heading back in the right direction.

All in all, life is good, if way too busy. And #gradSchoolSucks.

heavyheart

Your heart is too heavy from things you carry a long time,
You been up you been down, tired and you don't know why,
-- Matisyahu, Live Like a Warrior

You can count me among the millions of sad, scared people this week. My Facebook feed is mostly split between two groups this week: those who feel the same way I do, and those who think I and the others who feel this way are reactionary whiners.

I could write for hours trying to explain why we're scared and sad, but it would be wasted time. You either already agree with me, or you are likely not listening, REALLY listening, to anything I or my scared contingent say.

That is what I see as the biggest problem we face in America today. No one is really listening to the other side. We are all mired in our own echo chambers and when someone breaks through with a message contrary to what we believe, our reaction is to attack instead of listening.

I am told there was a time in America where the concept of a loyal opposition was an accepted, even celebrated, role in politics. I can't imagine it. For my adult life, the political reality has been "if you're not with us, you're against us" which has resulted in a do-nothing Congress hell-bent on accomplishing absolutely nothing for the American people in order to block any attempted legislation by President Obama and his supporters.

I naively believed that those on the other end of the political spectrum from myself still wanted the same things for America, namely a strong economy with unlimited opportunity and equality for the American people. That even if we disagreed on the "how" we all agreed on the goal.

But we have stopped listening to each other and assuming the best in each other. We are talking over and at each other and not listening.

The Mister is a hard-core Libertarian, which results in some ... um, well, interesting conversations about politics in our home. I know that the Mister loves me dearly, and would defend me to the ends of the earth if I were actively threatened. For the last few days, he's made comments about the people who are protesting the outcome of the election that while not directed at me, felt very personal. This morning, as I was getting out of the car, he took my hand and said "I know you're scared, but remember we're in this together and we'll get through it." I almost broke down in tears right in front of my office building because that was the first time this week I've felt my feelings validated by anyone who doesn't share my fear and sadness.

I know that most people who voted for Trump are good and decent people who do not support the vile, racist, homophobic, xenophobic, mysogynist, hateful rhetoric that he was spewing. Most of the people I know who voted for Trump would never condone the verbal and physical violence that has occurred this week in the wake of the election. But instead of hearing our very real fear, I see many of you trying to convince us that we're over-reacting or whining that we lost, and in some cases even trying to prove that the verbal and physical violence isn't real. Or worse, saying things like the only proven case of violence was graffiti in schools, and that's not worth discussing. What we hear is that children terrorizing other children isn't significant.  What we hear are statements mocking our very real fear and pain.

The Democrats are guilty of this too, don't think I'm giving us a pass. The leaders of the Democrat party have become completely out of touch with the "regular" people and the struggles they deal with every day.  The party has completely failed to hear and understand what people are going through and has marginalized those who don't agree with the platform.

Let me say this loud and clear. I hear you. I get that you're worried about how to keep a roof over your head, feed your family, and get healthcare when you need it. I know that entire swaths of industry have disappeared in this country, and that it leaves you and yours scared and angry. I get that terrorism is scary, and every time something happens here in the U.S. it feeds that fear. I hear your fear, I see your anger, and I understand.

If you're a conservative voter, you and I disagree on the best ways to fix the things driving those fears. I believe that a strong safety net is necessary. I believe that a public option for healthcare that is available to every citizen is a necessity. You believe that getting the government out of it and leaving it to the market is the best way to fix it. You believe the way to deal with issues of discrimination and hatred in this country is for everyone to just get along and quit talking about the issues.  I look at the history of discrimination and hatred in this country and believe that protections need to be established.  We disagree, and that should be OK. But instead, I get labeled a Socialist, you get labeled a Fascist when neither term means anything close to what we're trying to say.

If we could just talk to each other, and really listen to what the other person is trying to say, I believe we could find solutions that would work for both of us. But when the labels and judgment come out, there's no more communication.

That's when the political machine comes in, spreading lies and distraction to push us even farther apart. When we can't even agree on the facts, and issue moral judgment against the person who disagrees, nothing can be accomplished.  Fear and hatred are magnified, and the machine doesn't want us to find common ground.

If I could wave a magic wand and change anything about the politics in our country, it would be to close this entrenched gulf. I would not, in fact, wish that everyone thought the same way I do. I firmly believe that it is our differences that make us stronger. I believe that the strongest leader keeps people around them who disagree about what to do. I would just wish that we could once again embrace the loyal opposition, and figure out how to disagree in a civil and respectful manner.

There is a common saying in my UU faith which I wish for our country:

We need not think alike to love alike. *

This is my prayer for each of us.

 

* The quote is frequently attributed to Francis David, but arguably originated with John Wesley (founder of the Methodist church) so correct attribution is difficult.

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intuitive_eating

So for the past few weeks I've been struggling with how intuitive eating does or does not fit with weight loss surgery.  I don't have a healthy relationship with food to start with, so I'm admittedly at a disadvantage.  We grow up with certain foods being labeled as "bad" and "good", and some foods being held out as "treats".  Someone I know posted this week, "Treats?  What are we, dogs?"  It certainly made me think about how our society programs us for unhealthy attitudes about food.  I want to get away from that.

I agree that intuitive eating is a healthy approach to food.  Do I want chocolate cake?  If so, I should eat chocolate cake.  Thinking that I can't have the cake, or that it's forbidden or "bad" increases the likelihood that I'll binge on it.  Checking in with my body about what it wants and needs is certainly a good approach.  Food is not a moral issue.  Food is not good or bad, it's just food.

Most of the WLS community is sold on low-carb eating, many advocate a ketogenic diet.  The discussions on the boards frequently label anything with carbs as "bad" even including fruit and starchy vegetables.  Anyone discussing eating bread or rice is quickly informed that those foods have no place in our diets during the weight loss phase.  I find that kind of labeling problematic.  Especially given that I cannot eat low-carb.  Going into ketosis makes me incredibly ill for weeks, where most people get over the "carb flu" after 2-3 days.  So carbs are part of my diet, though I do try to eat mostly whole grains, fruits, legumes, etc. for my carbs and limit refined flour and sugar products.  But occasionally I want half of a bagel with cream cheese, dammit.  I refuse to start labeling food as "good" or "bad" just because everyone else does.

My sleeve actually is helping with part of the intuitive process.  My newly rearranged tummy has definite ideas about what it likes.  If I eat too much sugar, too much fat, too fast, or don't pay attention to when I'm full, I physically feel very bad.  Certainly reinforces the whole "listen to your body" thing.  My tastes have changed, and I'm having to re-learn what foods I do and don't like.  I am trying foods I would never have tried before this whole process started, as well.  Definitely steps in the right direction, I think.

Then there's the "have to" pressures.  I "have" to eat a certain amount of protein every day.  I "have" to drink a certain amount of water every day.  I feel pressure to eat vegetables and fruits, even the ones I don't like because they're healthy for me.  There are days I don't want another protein shake, or another chicken breast, or whatever.  There are days I just don't feel thirsty and the water just tastes awful.  Because I don't have much of an appetite anymore, if I practice completely intuitive eating, I can subsist on shockingly few calories and little hydration for several days before I'd feel the need to eat or drink more.  That doesn't seem healthy, but is it good to force myself to eat or to eat something I just don't want?  Is that any healthier?

Sometimes we have to hold our nose and take medicine that tastes awful.  There is a school of thought that food is medicine, and we should essentially hold our nose and eat what is healthy for us even if we hate it.  That school of thought is what has made me miserable for most of my life around the so-called "need" to eat vegetables.  While I see the logic, it's just not going to work for me.

So what am I supposed to do about the protein requirements and the fluid requirements?  My therapist asked me last time what the consequences were for not meeting the minimums.  If I don't drink enough fluids, I get migraines to start with, and other issues also arise.  So in order to stay healthy, I have to drink whether I want to or not.  All I can do is add flavorings to my water to make it more palatable.  With the protein, I suspect that missing a day here or there isn't a problem, but on an ongoing basis I'll start losing muscle mass.  So it's best if I strive for the protein goal every day in order to stay healthy and active.

As with so many things in life, I think that there's just no black and white answer.  I need to find ways to get all of my needed macro nutrients into my diet, most days anyway, to keep moving toward a healthier place.  Forcing myself to eat things I just don't want however, is going to push me back into an unhealthy relationship with food.  The best answer I have come up with so far is to start thinking of every food option for these macro nutrients so I can give myself options.  Like having different flavorings available to make the water more enticing, I need to have different options available all the time for my protein to give my tummy and taste buds plenty of variety to choose from.  Maybe the message my body is trying to send me is "enough with the freakin' protein shakes!!" and it's not about the protein per se because hummus or a nice bowl of lentils could meet the protein needs without forcing myself to drink another shake.  Maybe I'm just not listening ENOUGH to my body, even though I'm doing much better with it.

Food for thought.  (Pun completely intended.)

mri_anterior_cingulateI used to hate the term "cognitive dissonance."  That's because I had a guy one time use it as the reason to quit seeing me  when it was very clear to me at the time that the only dissonance was that I was smart and fun to be with, but I was also fat and the woman he had the hots for looked like a magazine model.

I'm starting to come to terms with the phrase, though, since I'm now going through it.  I find

myself trying to hold conflicting thoughts (or at least ones that seem conflicting) about body image and relationships with food.  I'm coming to understand just how frustrating a true cognitive dissonance can be as I try to tease out the layers involved.

It started when I read an article about a video blogger who had made the statement that you're not body positive if you're on Weight Watchers.  I dived into the rabbit hole of the internet, and ended up watching videos and reading articles from people in the body positivity movement for hours.  The vlogger that started it all for me had clarified that she was aiming that statement at people who are positioning themselves as leaders or examples in the body positive movement yet promoting ideas and products that are body shaming.  The statement made more sense in that context.  I agree that there is nothing body positive about the way WW does business or the messages they send.  That the WW program is healthier than most other commercial diet programs is not saying much, given that the evidence is pretty clear that diets make us fatter.

But I started wondering how she would see me and my choice to have weight loss surgery.  Can that choice mesh with a body positive mindset?  I brought the subject up with my therapist, and it started a very interesting and thoughtful conversation.  I'm still processing all of it, but want to share where I'm at in the hopes it helps someone else.

Some body positive activists clearly state that if you are trying to change your body shape, size, etc. that you are obviously not accepting it and that you are not espousing body positivity.  That was troubling to me because I do believe very firmly in many of the things the body positive movement is trying to promote.  I believe there needs to be a place in the movement for people who for whatever reasons want to change their size and shape, but know that it doesn't mean anyone else's shape or size is wrong or bad.

I can honestly say that my size and shape had little to do with my decision to have WLS.  Even though I've suffered bullying and a certain amount of discrimination over the years because of my weight, I had mostly come to terms with it.  I haven't looked in the mirror and hated what I saw for many years.  I don't feel pain when someone refers to me as "fat", because I am.  I'm also a strong, intelligent, sexy woman and my size doesn't alter that at all.

My decision was based on my health, which was in a decline for reasons not directly because of my weight, but certainly exacerbated by it.  The decision was made when Dr. B told me that the stomach tissue to be removed is directly responsible for a large part of the inflammatory factors that are driving my disease, and any weight loss after surgery would only serve to decrease the inflammation further.  The weight loss would remove significant stress from my screaming joints and could even render my medications more effective.  It wouldn't cure my auto-immune, but it held a great deal of hope for improving the condition.

Even clarifying this makes it sound like I'm bashing people who choose WLS because of aesthetic reasons.  I do not want to put forth that message.  Everyone has different priorities, and makes decisions based on them.  Those reasons are just as valid as others.  It's just not where I was coming from.

To make it even more complicated though, as I've lost weight I've found myself thrilled to be giving away clothes that are now too big for me and seeing some of the changes in my physical appearance.  Does that mean I didn't really love myself to start with?  Or that I cannot have a place in the movement because I'm liking the changes I'm seeing?  Or is that just playing into the societal expectation that only thin is pretty?  And since I’m trying to improve my health that I'm redeemed as a "good fat person"?

Health is a touchy subject in relation to body positivity.  One of the concepts that is hard for people to grasp, but is central to body positivity is that thin does not equal healthy.  That is very true.  Thin people get illnesses and fat people can be healthy.  You cannot tell by looking at someone whether they are healthy or not regardless of their size.  Did I have any guarantee that the surgery and weight loss would improve my health?  No.  However, other than reducing the stress on the joints, the weight loss itself isn't what's impacting my health.  It's the inflammation caused by the tissue that was cut away and the fat cells I’m losing.  It's a fine distinction, and perhaps it doesn't matter.  What about people for whom the weight itself has been shown to cause health problems, and losing it has improved their health dramatically?

I struggle with the health aspects of the body positivity movement.  I do believe there is a point - which is different for each person - at which the weight simply cannot be healthy.  When the weight itself prevents a patient from being able to move adequately to perform what medical professionals refer to as "activities of daily living" or ADLs (bathing, dressing, grooming, feeding are examples), then as a medical professional I simply cannot agree that the person is healthy at that weight.  I fear that the "health at every size" movement can go too far and give some people an incorrect belief that they are healthy when they clearly are not.

But even that definition - which I've been working on for months, by the way - fails when I properly expand body positivity to include more than just weight/size/shape issues.  Body positivity is also about people who are differently abled.  If a person is not able to do some ADLs because of a medical condition or injury, are they  then "unhealthy" because their condition keeps them from meeting my definition?

If a person who is unable to perform ADLs due to weight (or any other cause) is unhealthy, what does that even mean?  Here's where I converge again with the movement.  Because honestly, if I'm not their caretaker or on their medical team, absolutely nothing.  It is none of my business what anyone does in relation to their health if I'm not invited into that situation as a medical professional.  Doesn't matter if they're my best friend, my spouse, my child, or a stranger on the street.  It's not my business, nor is it my place to offer comments or advice.  Society treats fatness as a moral failing, and people seem to think it's their business to shame or confront people "because it's not healthy."  I think that's completely unacceptable.

Weight is a measurement of mass and gravity.  It is not a moral failing.  Our society needs to quit treating it like it is.  Our media needs to show many different kinds of bodies as "normal".  Our healthcare providers need to quit treating weight as the cause of every medical problem and shaming people who don't fit the "ideal" size and shape.  I read an account of a woman who went to her doctor with an ear infection and was told to lose weight and was not prescribed an antibiotic.  Another whose abdominal pain was dismissed for years because she needed to "be compliant" with weight loss and no testing done to reveal the invasive cancer actually causing the pain.  Absolutely unacceptable.  I'm on board with the movement about changing these things.

But then, I also participate in online support groups for WLS.  The people in these groups tend to be very focused on weight and BMI.  We gleefully post how many pounds or inches or clothing sizes we've lost.  We commiserate with people who are losing more slowly than others, congratulate the ones who are having "success", and share tips about our lifestyle changes.  We talk about caloric intake and carbs and "good" foods and "bad" foods.  How does that fit with the idea of body positivity?  It doesn't feel like it fits at all.  I can't (and shouldn't try to) change what other people are using as goals and benchmarks.  But perhaps I should take the advice I read today, and find different numbers than those on the scale and tape measure to gauge my success by.  I knew my health was declining when my heart rate was near 100 at rest and would jump to 150 walking from the parking lot to my physician's office.  Or when I couldn't even complete a cardiac stress test because I was too out of breath after 3 minutes on the treadmill.  I can judge the improvements in my health with numbers like these instead of my weight and my jean size.  I wonder how changing the language I'm using for myself would affect those around me?

So where's my place in the body positivity movement?  I don't know, but I found an article today that gives me hope that I have one.  The author talked about body positivity being about loving your body as it is right now, and taking responsibility for its care.  That can mean (but doesn't have to) making different choices about food and exercise and changing the size or shape, if it's coming from a place of caring for your body instead of hating it.

Perhaps, like most things in life, it's about the process and not the results.  I'm not trying to be a role model for anyone, or a leader in the body positivity movement.  Ultimately, it doesn't matter whether anyone in the movement accepts me and my thoughts and choices or not.  My actions are all I control.  I offer my thoughts and feelings with a small hope that it helps someone who's struggling, even if it's just knowing they're not alone.  My therapist (need a cute online name for her I guess) says that lots of people never even think about these things, and by examining my thoughts (even the dissonant ones) about it, I'm ahead of the game.

I'll have to think about that.