Health

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.

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.

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.

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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.

foodnotmoralThree weeks have blown by since my surgery day.  I'm now eating soft foods and working on getting my protein and other nutrients from food instead of relying on protein shakes.  I still have a protein shake every day for breakfast to get a good start on the day with about 1/2 of my protein goal right off the bat.  But through the day I'm working toward small regular meals with protein to meet my nutrition needs.  It's a slow progression, but it's been steady, and I still have no complications.  (knock on wood)

One of the things I found when I researched the gastric sleeve procedure is that most people lose their hunger drives and cravings.  I was convinced, however, that I would be the one person this didn't work for.  I'm happy to report that this was not the case.  I have to set reminders on my phone to eat and drink because I just don't get the same hunger signals I used to.  This has caused a sea change in the way I see food.

I wish I had grown up with a healthy relationship to food.  For a number of reasons, I didn't.  I know I’m not alone internalizing moral judgments about food - vegetables are "good," ice cream is "bad" for example.  And of course, the biggie - if you're overweight you're lazy, have no self-control, and are "bad".  There are lots of theories as to why our society imposes and reinforces these moral judgments about food.  I don't really care why, I just need to get those voices in my head to shut up.

Here's where the beauty of this procedure comes into play.  The messed up food voices are still in my head, but I no longer confuse them for physical hunger or cravings.  After I was cleared for soft foods, the Mister and I went to the grocery store.  Immediately, I was attracted to this amazing smell from the produce section and tracked it down to the nectarine display.  I have HUGE food issues going back to childhood and have severe anxiety when trying to eat anything out of my comfort zone.  I can't tell you if I had EVER actually tried a nectarine.  We bought a couple, and they were pretty good.  (They'd be better with granola or in a cobbler than by themselves in my book, but really pretty good.)  This is something that would NEVER have happened before.  Then we walked past the Little Debbie display.  Now, Little Debbies, specifically the honey buns, have been my downfall for a long time.  I'd clear out a whole box of them in 2 days before.  The messed up voice in my head said "oooh, Little Debbies.  That would count as soft foods.  We should get some."  Then the part of my brain that imagined actually eating one went, "eh.  Doesn't sound that good."  Walked by with no issues.  Same thing happened with the Pop Tart section on the next aisle.  (Chocolate Fudge Pop Tarts were another gotcha for me in the past.)  It was incredible.

I don't know if this effect will last forever.  But if it lasts long enough to help me establish a different relationship with food, it will be so very much worth it.  I think I could have gotten there with enough time and therapy, and admit that surgery is a drastic solution.  However, it's working so much better than I could have wished for.  It's still too early to say "best decision I ever made" but the evidence is racking up pretty fast for it.

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kitty_napThe radio silence has been due to my having surgery last week and being in recovery mode since. The short version of this article is as follows: surgery is never fun, it's weird not feeling hungry, and life is good. If you want the details, keep reading. Otherwise, have an excellent day, see you next time.

The surgery went very well. I have a history of having severe nausea after anesthesia, and considering it's the #1 post-op complaint about bariatric surgery, I was a bit worried. But my anesthesiologist gave me a drug beforehand, plus a scopolamine (motion sickness) patch, and gave me IV Zofran during the procedure. Whatever she knocked me out with caused me to lose a chunk of time, I don't even recall being moved from the pre-op area to the surgical suite, nor being in post-op recovery at all. I had absolutely zero nausea. I had filled a couple of prescriptions for dealing with it at home but haven't opened them up at all.

My post-operative pain was there, but it wasn't even comparable with the pain after my knee reconstruction. It was enough I couldn't ignore it and limited some movement, but it wasn't unbearable. Which is good, because I found out that Dilaudid doesn't do jack for me. If the pain had been much worse, I'd have asked to try morphine instead, but it was already lessening by Day 2. Tramadol took the edge off, so I didn't ask for Norco. Went home Day 2 and by Day 3 my unmedicated arthritis hurt worse than my stomach. At this point, it's slighty sore when I move certain ways, and that's it.

Recovering from surgery means a lot of sleeping and laying around doing nothing. Since my arthritis is flared up, I can't really do any knitting or crafting that I would like to when forced to rest for hours on end, so I've been watching a lot of Netflix. And drinking. Water, I mean. Well, and the protein shakes. My instructions are to drink at least 48 oz of fluids and get about 60 grams of protein in, with more being better and fluids being a higher priority than the protein at least to start. I didn't meet the fluid goal until Day 5, and still haven't met the protein goal, but I've been improving every day.

When researching the surgery, almost everyone I talked to said that their appetite completely went away after the surgery, and they had to remind themselves to eat. While I really hoped that it would happen for me as well (and worried that it wouldn't) it's been a huge adjustment. I'm really not hungry. My stomach can be empty, and I know I'm physically hungry, but I just don't feel hungry or interested in food. It's not quite a food aversion (though I am getting hellishly sick of protein shakes) but just a general disinterest. I'm using timers on my phone to remind me to drink and eat because I'll get involved in something and just not think about it.

I had arranged to work from home this week because of the surgery, and it was a good call. Today is probably the first day I think I could manage the office if I had to. My department has started offering part time work from home, and my days are Tuesday and Thursday, which breaks the week up well. I was on the fence about it, but after this week I will definitely take advantage of it.

I'm already down about 13 lbs from my weight on the surgery day, so that's awesome. Of course, the journey is just beginning, but I think I'm off to a great start.

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1345951608-rocky-no-easy-way-out-400x400I'm lucky that I haven't actually had someone say to my face "you're taking the easy way out". Mainly because I'd likely have to contact my attorney about defending me against charges of battery, and that probably gets expensive.

Or assault. I used to think I had the distinction clear in my head (assault is the threat, battery is the actual touching), but I've had people tell me that it's just assault. (But I digress.)

Right now I'm on my pre-op diet. The surgeon calls it a fast, but I do not think that word means what she thinks it means. (Any opportunity for a Princess Bride quote should not be squandered.) She has me drinking protein shakes 2-3 times during the day, and having a "healthy dinner" and can have "healthy snacks" if needed. MyFitnessPal informed me after I closed it out last night that if I continued eating like that, I'd lose 15 lbs in the next 5 weeks. Well, heck. I should just do that, then, instead of having 75% of my stomach cut out, right? I mean, isn't this really just a way to get out of having to have discipline and self control?

One of the things we've learned about dieting and maintaining weight loss is just how freaking HARD it is. Some of us are genetically programmed to put on weight easier than others. That's not an excuse, it's science. Then our bodies adjust to the new weight and fight like a cat in water to keep it on. This is what's commonly referred to as "Set Point". Our brains use a bunch of hormone signals to make us crave salty, sugary, fatty foods in order to maintain the weight the body thinks is correct. When we successfully lose weight, our metabolism lowers and our caloric intake decreases, requiring us to eat even less, all the while fighting against this tide of hormones. Food manufacturers know this, and create convenience foods that are full of the salt, sugar, and fat our bodies are screaming at us to eat. Culturally, we don't expend as much energy as our ancestors, and cram our schedules full so that eating home cooked foods is a struggle. Worse, the more weight you pack on, the worse this uphill battle gets.

Whew. And that's without even touching the emotional and mental barriers we face. Talk about the deck being stacked against you.

Yes, some people do successfully lose a lot of weight. And some of those are able to keep it off for a long time. And some of those are able to keep it off (mostly) for the rest of their life. It's possible. Possible does not mean realistic, though. It's possible for me to become a concert pianist. However, starting at the age of 46, it's really really damned unlikely. Likewise, it's possible for me to lose the 120-140 pounds I need to and keep it off without the surgery, but it's really really damned unlikely. Seriously. A 5% chance I'll keep *any* of it off past 5 years. Surgery raises that chance to somewhere between 50% and 70% depending on the study reported. Commitment to the lifestyle changes can bump either of those estimates up, certainly. The starting line is a little better at 50% or 70% than it is at 5%.

Wait a minute, didn't I just make an argument for it being the "easy way out"? Depends, I guess, on how you look at it. If I am running a race, and it's uphill, is it taking the easy way out to ditch the 50 lbs of sand someone put in my backpack? Is it taking the easy way out to buy good running shoes with good ankle support, or should I just go ahead with the 3" heeled pumps because that's what I was given? I'm choosing to equip myself better for the long haul. To me, that's smart, not cheating.

Let me talk for a minute about how "easy" this is. Once I made the decision to move forward with this, I had to schedule a string of appointments. A seminar with the weight loss surgeon. A one on one appointment with the surgeon. One with my cardiologist. Followed by a stress test with the cardiologist. One with a nutritionist. One with a psychologist to clear me for surgery. Three months of a supervised diet with monthly lectures from the doctor supervising me. Another with my primary physician to clear me for surgery. An upper endoscopy with my surgeon to check for ulcers and hiatal hernias. A follow up appointment with the surgeon about the endoscopy. Another appointment for the final preparations once insurance approved me. Pre-op testing, though I can skip the EKG since my cardiologist had to do a stress test. All totalled, I have spent almost $900 out of pocket for co-payments and co-insurance. I'll spend another $1,000 out of pocket over the next couple of months. (I'm grateful to have excellent insurance, without it I'd have to go to Mexico and it would cost me on the order of $5,000 plus travel, or some $10,000 to $15,000 to have it stateside.) That doesn't count the $1,200 I've spent so far with a therapist facing some of the food issues that would derail this process if left alone, because I'd have that expense if I tried to do this with just diet and exercise.

Now I'm on a two week "fast" and it's hard. The snack machine at my office tempts me every time I walk by to refill my water mug or mix up another powdered protein shake. The fast food restaurants taunt me as I drive by them. I want to EAT ALL THE THINGS because I'm starving, I have a headache, and I'm groggy. Oh, and I have to be off all of my PsA meds for the surgery, so I also have pain in my hands, my feet, my back, and my knees. I can't distract myself with crafts because my hands hurt. I can't take a walk because it feels like spikes in my arches. I'm on day 3 of 14, and I'm fairly miserable.

After surgery, I'll be on a full liquid diet for 1-2 weeks. Then I get to have pureed food for another week or two. Then I get to "graduate" to soft foods like eggs and tuna. It'll be 4-6 weeks before I can have "regular" food again. Even then I'll have to add foods one at a time and be very careful because my tolerances and tastes will have changed, and any given food - or too much or to fast - can make me very ill. I'll very likely be on a fairly restrictive diet for up to a year. Once my system recovers, and I'm at or near my goal weight, I'll get to add foods to my diet in a measured way. 18 months after surgery, my diet should look fairly normal, though with slightly smaller than normal portions.

Meanwhile, I'll have to get creative in order to stay clothed during this time. People report changing a size or more every week or two through this process. I should count myself lucky that it's culturally acceptable for me to wear skirts, because I forsee many months in drawstring maxi skirts. If I were a guy, this wouldn't be as easy, and that might be the first time (and likely the only time) I'll ever say that regarding fashion. Oh, and a lot of my hair might fall out.

But some will still say it's the EASY way out.

No. The EASY way out is to keep doing what I've been doing and not make any changes in my life. The EASY way out is to keep trotting out the tired and worn excuses as to why I can't do better. Not trying, THAT is the easy way out.

Anyone who is out there making changes to improve their health and life is NOT taking the easy way out. Choosing different tools to help make those changes is not taking the easy way out. Dietary changes are a valid choice. Exercise is a valid choice. Surgery is a valid choice. Medications are a valid choice. Any combination of the above and more is a valid choice. Each has risks and benefits that are unique to each person. Not one of these (or any combination of them) is the "easy way out".

So do me (and my attorney) a favor. Don't tell me I'm taking the "easy way out".