Health

I hadn't reviewed the Pill Suite yet because I'd had issues with the bags.  I have since gotten replacements and am now THRILLED with this solution for my meds and want to share.

As most Spoonies, I have a LOT of medications/supplements I take multiple times a day.  I have struggled with the standard pill sorters, especially with travel and when I needed to take pills 3 times a day.

I happened on the little zip-lock medication bags at the pharmacy prior to one business trip, and found that it was a MUCH better solution - at least for travel - than the weekly organizers I'd been using.  I could prepare as many days as I needed, as many times a day as I needed, and put all of it in a sandwich zip-lock bag in my carryon.  It was a royal pain to load them all, though.  I first had to sort my pills into the standard weekly sorter, then close all of the lids and open each one to get the meds for that dose to put in the individual bag.  Still, better than nothing.

Then I found the Pill Suite on Grommet.  The sorter looks like a normal 7-day pill organizer, but it has a rotating lid with a funnel that lets you get just that one medication time's worth of pills without fussing with individual lids for each day.

For me, this invention alone would change the way I handled my meds.  In fact, I had already decided if the rest of the system didn't work out, it was worth it just to have this handy little dude.  I would just use these to sort and load the little zip-lock bags from the pharmacy.  I actually bought 2 so I can do a week's worth of am and pm at the same time, or 14 days of one or the other.

The selling point of the product however, is the sealer and the little recyclable bags that it uses.  This is like a tiny vacuum sealer, but without the vacuum.

The bags have a perforated edge that easily tears off in order to get the pills back out.  This makes them a one-time use product, but that's cleaner than a multi-use bag, and they are recyclable.

If you take more pills at a time than will fit in this bag, bless you.  My morning regimen currently has 7 pills including 1 horse-sized capsule, and I take a little less than 1/2 of the availble space for pills.  (You need to leave room for the sealing process at the top.)

I will note that the first set of bags I got with the system were incredibly difficult to open, to the point of aggravating the arthritis in my fingers and requiring me to pry the layers apart with a tool like a pen once open.  I contacted the manufacturer, and they said they'd had a bad manufacturing batch, and offered to send replacements.  I've had zero issues with the new bags.  They open super-easy off the roll and I've had no problems with them.

This seems like overkill, I know.  And I AM an admitted gadget freak.  This might be overkill for someone who doesn't have a lot of meds, or only takes them once, maybe twice a day.  But even at just 2 medication times a day (my current), this system is flexible enough for me to set up 1 week at a time, or a month at a time based on my needs.  And if I have to start taking a mid-day dose of something in the future, again that's easy to do.

Caretakers may find this better as well, as the bags can be labeled in any way needed, and as many medication times/days as needed can be prepared in advance.  Morning med packs can be stored in a different place than evening med packs if that's more appropriate.

Travellers will find this immensely helpful.  Of course, check with laws/regulations about needing original labels or other documentation.  (I have my pharmacy app on my phone that documents my presciptions and has pictures of the pills for reference, and I always leave controlled medications in their original package.)

Information and ordering are available at Pill Suite and I have also seen the system and refills available on Amazon and it was originally sold on Grommet.

And just so you know - I have received no money or other stuff of value from anyone for my review here.  I bought the system full price, and no one asked me to post this review.

A few weeks ago I got to take a week long business trip to Irvine, California.  I took advantage of the opportunity to go out to the beach a couple of evenings I was there, and walk in the sand.

I lived about a year and a half in Hawaii when I was a child, and it's been that long since I've been in real surf.  (I maintain that beaches in the Gulf of Mexico do NOT have real surf.)

It was awesome to walk on the beach in the edges of the surf.  It was awesome in a different way to get reminded of the sheer power of the ocean when I didn't pay attention and got my feet yanked out from under me by one of the larger waves.  (No serious damage was done, just Mother Nature reminding me that she'll knock you on your ass if you don't respect her.)

As it was, I walked a LOT further down the beach and back than I originally intended to.  I had forgotten that walking on sand at an incline is a LOT more strain on the legs and feet than on level ground.  So I was incredibly sore when I got back to my car (not to mention having sand EVERYWHERE) but it didn't appear to flare my rheumatoid disease any worse than it already was.

Yes, it appears that my RD/PsA is not in remission as we had hoped.  We're currently waiting on blood test results that will inform our treatment decision, but just from my pain levels and where the pain is, I can definitively say I am *not* in remission.  It was a nice thought, but now it's time to reassess, remake the plans, and move forward.  My pain levels are reaching the point of interfering with good sleep and trying to keep me from moving.  But my week in California taught me that moving actually lessens the pain - at least after the first few minutes.  I was

My pain levels are reaching the point of interfering with good sleep and trying to keep me from moving.  But my week in California taught me that moving actually lessens the pain - at least after the first few minutes.  I was in a situation where because of parking costs, I had to walk about 2 city blocks each way to get lunch every day.  This is in addition to my evening forays to the beaches.  Once I got up and started moving, I felt better.  (The weather helped because it was drop-dead gorgeous the entire time I was there.)  So I'm committed to stay on my exercise program.  Right now I'm focusing on water walking/swimming twice a week, and plan to start adding on light weight training soon.

I also went to a meeting of an in-person weight loss surgery support group, and found that I like them and the format very much.  They even convinced me to join them in a 5K walk later this month.  So the Mister and I are going to start walking as much as we can in the Texas heat to prepare for it (he's doing the 5K with me).  I may not finish, but I'm going to give it my best shot.  I have told my friends who are runners that this is NOT a gateway for me to start running.  They just laughed.

So that's where things stand in TheAntiChick's world.  Not perfect, but doing OK.

So today marks the one year anniversary of my life-changing surgery.  I had my checkup with my surgeon yesterday and got the best surprise.

You see, I have a scale that is consistent but not accurate.  It has consistently throughout this process weighed me 5 lbs lighter than the doctor's scales.  I thought I could trust it.  Yesterday morning, I got on and it said 198# which I converted in my head to 203#.  I had been down to right at 200# and had been waiting to break into what WLS peeps call "ONE-der-land".  I'd perversely hoped that it would happen for my check up day.  But alas, weight fluctuations happen and while I wasn't upset about the seeming gain, I was a little disappointed to have my official 1-year weight over 200#.

But, when I got on my doctor's scales, this is what was displayed:  199.74# with a BMI of 29.5 - which made me VERY happy.

A BMI of under 30 means I am no longer clinically obese, now I'm just overweight.  I actually reached that point a few pounds ago, but this is the first time it's been recorded in my chart.

I don't like the BMI for a lot of reasons, but it is the measurement that's used most often clinically.  So getting that "Obesity" classification off my record is a big win.

I don't usually post a lot of pictures on this blog, but today's a special day.  Here's where I started.  The picture on the left was a few years ago at my nephew's wedding, the one on the right is my wedding in 2015.  I topped out at 306# a little after this.  I don't actually have any pictures of me at my highest weight.

 

 

Here's my pics today:

 

And a face-to-face comparison from just before surgery to now.  This is where I think the weight loss REALLY shows:

I've already written about the health improvements I've seen from the WLS.  While I'm afraid that my rheumatic disease is not, in fact, in remission, the other improvements are amazing.

I was setting up my pills today for the next couple of weeks and kept looking for more pills.  That can't be all the medicine I take!  Yep.  I now have only 4 prescriptions I take regularly - my allergy medication (one pill and a nose spray), my proton-pump inhibitor to protect my sleeve from meds, and my cholesterol pill.  I hope to lose the cholesterol pill soon as well.  I do still have migraine medicine for when I need it, but no longer take a preventative.  Even with the vitamins and supplements I need to take, I'm taking MUCH less each day than I used to.

So 1 year out.  Not quite to goal, but under 200# and that's amazing.

More to come...


Picture from the No Body Shame website

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

<--- this pic is where I started

this pic is where I am now -->

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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.