Wednesday, January 11, 2017

Are We All Just Paying To Die?

I wrote a post in September, Doctors Are Part Of the Problem, But They Can Also Be Part Of The Solution, about a terrible appointment I had with my (previous) primary care physician (PCP), in which I was degraded and basically accused of faking my illnesses. 

But then the situation got a little bit worse. 

BECAUSE I GOT BILLED FOR IT. 

Not only that, but it was a bill for $125 for an “extensive physical examination.”   

When I get bills, I pay them.  Even when the amount is painful.  Even when the bill gives me sticker shock and I see red.

AS LONG AS SERVICES ARE RENDERED.

But if you try and charge me for services that were not rendered – and that we both know clearly were not rendered – I will fight back. 

(Cue “Ferris Bueller’s Day Off” – This is where Leslie goes berserk)

All I received was a lecture, and a misguided one, at that.  And then, to add insult to injury, I was billed for it.

I still can’t get over it.  Clearly.  The gull of the doctor.  Apparently he didn’t realize who he was dealing with.

I was so angry that I handwrote a letter.  I just couldn’t stop myself. 

I’ve included the letter here, both pictures of the handwritten version (which I promptly sent) and the text so you can read it (names have been redacted).

***** 



To Whom It May Concern:

I will NOT pay this bill.  On this date, at this appointment, there was NO examination.  Nothing was done other than Dr. _____ yelling at me for no reason.  I was accused of faking my illnesses.  I’m sorry that your office staff sucks, but as a patient, that is NOT my problem, and should not be taken out on me.  You can send this bill to collections if you are that petty, but I will fight it.  If Dr. ______ cares at all about anything other than the bottom line, this bill will be wiped.  It’s the right thing to do and he knows it.  My _____has an established relationship with Dr. _____ and I don’t want this to impact their relationship.  However, if this bill does not disappear, there will be a big problem.  I’ve never been treated the way I was that day by any doctor ever.  And I’ve seen a lot of doctors.  I will not pay money for services that were not performed.  That borders on malpractice.  I sincerely hope other patients will not be treated the way I was.

Leslie Rott

*****

Should I receive a call from a lawyer or a collection agency, I will be happy to them exactly why this bill will not be getting paid, and why, quite frankly, this doctor should not be practicing medicine. 

Additionally, I recently learned that, bloodwork I had put off and then had done, even though I have since made the decision never to go back to this doctor, not only did not confirm his belief that I was faking my illnesses, but did confirm my belief that he believed I was faking my illnesses. 

He ran a variety of tests, including anti-nuclear antibody (ANA), which is a diagnostic test, a confirmatory test, for autoimmune diseases, like lupus and RA.  If he was really curious, this is a test that he would have run when I first started seeing him.  But no.  There’s something cold and calculated about him running that test when he did that makes the situation all the worse.


I always knew that doctors like this existed, but I had never experienced one firsthand. 

Aside from the moral problems I have with this entire situation, I also have a practical problem.  Unfortunately, sick people need doctors.  I am chronically ill, and as a result of this situation, I no longer have a PCP.  And based on my past negative experiences – although this one being the most negative – I’m not too excited about finding a new one. 

But I need one.  And it feels like a lot of work. 

So I am left to wonder.  Are we all just paying to die?

Are we all paying to stay well and avoid becoming ill at all costs?  And then when we get sick, are we paying not to die?  Which, in the end, leads to the same, unfortunate, inevitable conclusion?

My Bubbie passed away at 90, and was pretty healthy until almost the very end.  But I watched the end of her life become the most physically and emotionally painful, and also the most costly.  I am 31.  I am not healthy.  So by that calculation, I will pay and continue to pay not to die.  The most costly times, health wise, are still in front of me, and in the end, I will die anyway.   

I can only fear that in our fast approaching new political climate, this situation is only going to get worse.  We will get poorer quality services at a greater cost to us.  And in the end, we will be sicker for longer, and we will die, sicker.    

We’ve already seen what happens when people in power use it against those who do not have that same power.  I’m not trying to get political here.  But I am using my voice.  And unfortunately, even though one of my New Year’s Resolutions for 2017 is to get un-angry and to focus on the positive, one power I do have is not to stay silent and to expose medical “ills” where I see and experience them.  Therefore, I am sharing this experience, despite the fact that very little good can be found in it. 

Because doctors like this are not doctors at all.  They use their power for evil instead of good.  They give the medical profession a bad name.  They make patients feel badly about themselves, they accuse patients of faking their illnesses, when they, themselves, in fact, are playing the system.  They are charging patients for services they did not render in the hopes that no one will have the time, will be too sick, or will not pay enough attention to take a stand and fight back.   They also make those who are healthy feel that doctors are too cumbersome, so they avoid them at all costs, until they become sick and have no choice.  

Thursday, January 5, 2017

2016: Year In Review

2016 began with my moving back home to Michigan.  It ended with dealing with the loss of my grandmother.  There was a fair amount that happened in between, some of which I haven’t even gotten the chance to write about yet (i.e. a new relationship, a move, and gum surgery).  So here’s what I did have the chance to write about…    

I lamented and celebrated pharmaceutical companies and pharmacies:




I struggled with negative emotions:




And the lows of chronic illness:






I celebrated the good things:


And mourned the bad:



And I reviewed some cool products:





Of course, these aren’t all of my posts from 2016, although there were a lot less of them than in past years, but these are the ones I felt were worth highlighting. 

I’d be lying if I said that the last several years have not been difficult.  I lost an uncle, both grandparents, and my dad over the last four years.  But regardless, I keep on keeping on.    

As always, at the end of every Year In Review post, I include a list of books I’ve read over the past year.  This list is much shorter than in the past and includes several that I have read before.  I think I started more books than I finished this year, but here they are:

1.       “Stir” by Jessica Fechtor (NF)*

2.      “Then Came Life” (NF)*

3.      “When Breath Becomes Air” by Paul Kalanithi (NF)*

4.      “NYPD 4” by James Patterson and Marshall Karp (F)

5.      “Spark Joy” by Marie Kondo (NF)

6.      “The Beach House” by James Patterson and Peter de Jonge (F)

7.      “Courtney’s Legacy” by George Cantor (NF)

8.     “The Trial” by James Patterson and Maxine Paetro (F)

9.      “Fairy Tale Interrupted” by Rosemarie Terenzio (NF)

10.  “Die Young With Me” by Rob Rufus (NF)*

(F) – Fiction; (NF) – Non-fiction

* Books specifically of interest to chronically ill readers

Wednesday, December 14, 2016

Failing As A Patient Advocate (And A Granddaughter)

I’ve been absent from my blog for awhile now.  It’s not because I haven’t had anything to say or write about, but more so because I wasn’t sure how to write about the things I was dealing with, or the things were in the midst of happening and I was trying to privately process everything that was going on.

The most recent thing I’ve been dealing with is the hospitalization, and ultimately, the death of my Bubbie (grandma).  She died November 30, 2016, at the age of 90, after spending almost a month in the hospital. 

Yes, I understand that she was 90 years old.  So please don’t provide lame platitudes about how she lived a good, long life.  I get it.  But that’s not what this post is about.  This post is about the complete and utter failure of our medical system, and the fact that as a patient advocate, I stood by and watched it all happen and felt powerless to stop it. 

My Bubbie went into the hospital on November 1, 2016.  She was released from the hospital on November 11, 2016.  She went back into the hospital on November 13, 2016, and never came out, much to my family’s complete and utter shock. 

Prior to this hospitalization, my Bubbie was exceptionally healthy for her age.  She lived independently.  She cooked her own meals and cleaned her own house.  She did everything.  We celebrated her 90th birthday in May and it seemed like there was no sign of her slowing down.   

However, after feeling tired and unwell for several weeks, she went to the hospital and was diagnosed with pneumonia.  She was put on oxygen and antibiotics.  She seemed to improve enough to go home.  She was discharged from the hospital, without oxygen – which she had never needed prior to this – for a day and a half. 

She started having additional breathing issues, and much to her disagreement, we made her go back to the hospital.  We were told that the pneumonia had resolved, and that the doctors weren’t exactly sure what was going on. 

And quite honestly, they didn’t really seem to care all that much.  I could tell by the way some of the doctors talked to her that they had written her off because of her age without getting to know her, and learning that she was sharp and clear-headed.  Unless of course she was deprived of oxygen or her carbon dioxide levels were allowed to get too high, and then she became disoriented.

But seriously, they talked to her like she was three years old, and they acted like she wasn’t capable of making decisions for herself.  They talked about her, around her, everywhere but at her. 

Part of the problem is that my Bubbie ended up spending so much time in the hospital, and most of that time confined to a bed, which caused fluid to build up and her muscles to weaken, amongst other things.  And we all know that the longer you stay in the hospital, the more likely you are to get sicker.  That’s exactly what happened to my Bubbie.  Although the pneumonia she was originally treated for had resolved between the first and second hospitalizations, my Bubbie developed hospital-acquired pneumonia. 

My Bubbie’s own primary care doctor, who was – operative word “was” – also a family friend, failed her because he was able to deal with her when she was healthy and only needed to be monitored routinely, but as soon as she required more, he was nowhere to be found.  He didn’t bother to call once or visit her in the hospital, despite knowing full well that she was there. 

And his associate in the hospital was an absolute joke.  When it was explained to us upon my Bubbie’s second admission that the reason she was sent home without oxygen the first time is that she was denied it, I asked the associate what would happen if she was denied it again upon discharge.  Ultimately, we never got to that point, but the doctor told me that it was a good question, but she didn’t know.  That answer was unacceptable and I told her so. 

Most conversations that were had were as effective as the previous one.  I wondered why we were having conversations about invasive heart surgeries that neither my Bubbie nor the rest of my family wanted her to go through, when our collective goal as a family, and my Bubbie’s own goal for herself, was to get her home. 

When it became clear that my Bubbie likely would not return to her previous state of independence, we were provided with the opportunity to talk to the palliative care team.  This occurred six hours before she passed away.  SIX HOURS.  When my Bubbie was sedated and could no longer make a decision for herself, when it fell on us because there was absolutely no other choice. 

These conversations don’t happen when they need to.  Or they don’t happen at all.  I totally understand now all of the stories I’ve heard of people saying that their family member entered hospice just a few days before they died.

Obviously, no one ever leveled with us and told us what was really going on, and what the likely outcome would be.  And this is despite the fact that unless it was the middle of the night, my Bubbie was never alone.  There was constantly a family member with her.  And we still couldn’t prevent all of the failures that occurred.         

I will say, the experience wasn’t all bad in that the nurses were incredible during this experience.  They were so kind and attentive.  They treated my Bubbie like she was a person and not like she was merely someone else’s family member.

However, my Bubbie did everything right.  She went to the doctor religiously.  She paid for good health insurance.  Again, up until this experience, she was in exceptional health for someone her age. 

It’s hard that she’s gone, but the hardest part is the guilt I feel for not doing more.  This is what I get paid to do.  I failed at my job.  But what’s worse is that I failed my family.  I failed one of the most important people in my life. 

I didn’t ask the hard questions.  I didn’t do a good job of shifting the conversation.  I didn’t do the things I felt needed to be done because I wanted to respect family dynamics and didn’t want to rock the boat.  I became passive, and I am not a passive person. 

As someone with a chronic illness, I’ve experienced firsthand how our healthcare system fails sick people, and now I’ve experienced firsthand how our healthcare system fails healthy people, who become get sick, and who die. 

I hope my Bubbie knows how much we love her and that we were there with her until the very end, even when we unknowingly ended up there.  I hope she knows that if we had been fully aware of what was likely to happen, we would have taken her home when that was still an option, when that’s what she wanted, when that’s what we all wanted.  

So take a good, hard look at the picture below.  My Bubbie was everyone’s Bubbie; that’s the kind of person she was.  This could be your grandma.  This could be anyone in your family.  This could be you.  

Eva Rott
May 27, 1926 - November 30, 2016

Monday, October 31, 2016

Product Review: Axon Optics Migraine Glasses

** I have been given this product as part of a product review through the Chronic Illness Bloggers network.  Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. **

I’ve been absent for a while.  There are some things that happened recently that I cannot really publically talk about right now, and I’m not sure when I’ll be ready to.  But I’m back to post this product review and I’ll probably go away again – both for the sake of my emotional and physical health (more on that later).   

Anyway, this is a review for Axon Optics, specifically for the COVER-RX indoor glasses. 

What drew me to these frames in particular was the premise of being able to wear them over my prescription glasses.  I have been known to wear my prescription sunglasses inside when I get headaches that make me sensitive to light. 

People probably think I’m hungover, which I’m not.  I just get really bad headaches with pesky light sensitivity, and the only thing I can do is slap some glasses on my face and look away from the light.  That makes me sound like a vampire.  But I’m not a hungover vampire.  I just have lupus. 

I’ve been getting headaches with light sensitivity for as long as I can remember.  They have become more frequent since I was diagnosed with lupus and rheumatoid arthritis.  Sometimes they are so bad that I can’t function.  Other times I can function, I just don’t do it well. 

Axon Optics specializes in glasses specifically for migraine sufferers who experience light sensitivity. 

 



Overall, I was really impressed with the quality of this product, from the box they were packaged in, to the case that they came in, to the glasses, themselves.  I will say, they did put some pressure on my nose, which initially increased the pain.  I think I just have to get used to wearing them.  I felt like the tint was something to get used to, as well.    

The other thing is, wearing two pairs of glasses isn’t super sexy.  In fact, it looks kind of goofy.  Any more or less goofy then wearing traditional sunglasses inside?  Probably not.  I guess the positive thing about wearing actual sunglasses inside is that people can’t see my eyes, which is good when I don’t feel good. 

If my headaches get bad enough, the only solution I have found is to put a cold cloth on my head, close the lights, get under the covers, put a pillow OVER my head, and go to bed.  So the idea of being able to still function with one of these headaches is very promising.  Especially by doing something that I do all the time – wearing glasses. 

That’s the other thing I like.  This is a simple solution to a complex problem.  Not simple for those who created them, but simple for those of us who have tried a plethora of solutions with little to no relief.    

I do feel that this is one product that I have to keep trying to really adequately reflect on the results, especially considering that things have been so crazy lately.    

With lupus, I have full body sensitivity to fluorescent lights, so I’m curious to see if wearing these glasses will minimize that, as well.  If only they could create a full body filter for fluorescent lights – that would make this lady with lupus very happy. 

If you suffer from headaches, especially with light sensitivity, you might want to check out these glasses.  Axon Optics has a variety of styles.  They are a bit pricey, but if you wear prescription glasses, then the styles that go over your glasses like the COVER-RX are a great option.   

Thursday, September 22, 2016

Doctors Are Part Of The Problem, But They Can Also Be Part Of The Solution

“Are you a good witch or a bad witch?
Who, me?  Why I’m not a witch at all.”

There are good doctors and there are bad doctors.  I’m not a doctor – well not that kind, anyway – but recent experience suggests that maybe I should become one.

On Saturday, I had a follow up visit with my primary care doctor.  To put it mildly, it went terribly.  He asked me one question, I answered truthfully, and he freaked out.  He basically told me that if I coped better with life, I wouldn’t be sick. 

Well isn’t that rich?  Is that your many-years-of-medical-school-medically-informed-opinion doctor?  Because if it is, you need to go back to school.  And if it’s not, you need to stop.  Just stop. 

You know, when he learns what it’s like to become chronically ill in his early 20s and lose his dad on his 29th birthday in a very traumatic way, then judge me.  But until then, don’t – and oh wait, he can’t because he’s already way past that.  All things considered, I think I’m doing pretty well.  And I am not perfect my any means, but I don’t deserve to have some doctor’s petty resentments projected onto me.  That’s not right and it’s not fair.    

I barely held it together in the appointment.  I should have stood up for myself.  Or I should have just walked out.  But I didn’t.  I sat there, trying not to cry.  Trying not to scream “You have no idea what you’re talking about!”  But I clammed up, I closed off, and I didn’t know what to say.  I don’t think I’ll ever go back to him again. 

This situation reminds me why I sometimes hate doctors, and why I sometimes go through phases where it all just gets to be too overwhelming and I have to take a break for a while. 

Whenever that happens, I get delinquent about doing the preventative things I’m supposed to.  And then things happen, and I’m rocked back into reality and the fact that I have a crappy immune system and all that comes with it. 

And maybe that’s because I’ve had a lot of bad doctor/medical professional experiences, not just the one I just described.    

Here is a case in point:

Not long after I got sick, I had a yeast infection. It was really bad.  I’ve never had one like that before or since.  My only choice was to go to the walk in clinic at student health.  I saw this nurse practitioner who was asking me questions and basically told me that since I had lupus and RA, why was I even thinking about having sex?  Like sick people can’t have sex?  I was so shocked, I didn’t really react or fight back. 

Honestly, I’m still traumatized by that one.

But then I have experiences like today, that renew my faith in the medical profession, and make me realize that there are good doctors out there, and that we need to work together to improve healthcare. 

I finally went to the gynecologist, after too long of not going (read several years).  And I had to see a man, which I wasn’t thrilled about.  But it went very well.  The doctor was very thorough in taking my medical history.  And he really understood the complexity that is my chronic illnesses.  He was very non-judgmental.  And his office staff was very professional.  I was very impressed.  I left feeling very good about the appointment, which you can’t generally say about the gynecologist.  And thought, why can’t he be my primary care doctor?  

I’ve learned that the office staff at a doctor’s office says a lot about the doctor.  So this doesn’t bode well for my primary care doctor. 

Aside from the situation I described, I received a notice that my new insurance had been billed for an appointment when I didn’t have that insurance, so of course they rejected it.  I’d called my old insurance, and they stated they had never even received the claim.  Getting anyone from my primary care doctor’s office to deal with it has been a huge problem, so in retrospect, I shouldn’t have been so surprised about Saturday because I suspect that some of what went on was a result of having to basically fire his entire office staff.    

But regardless, if I’m having a bad day, I cannot treat my clients the way my doctor treated me.  So even if, as I strongly suspect, the behavior wasn’t actually directed at me specifically, it doesn’t make it okay.  It’s unacceptable. 

And if the billing issues that I experienced are such a widespread problem for this doctor, then I believe the doctor should have sent a letter out to all patients, explaining the situation and that they are trying to rectify it.  But rather than act responsibly, he decided to take it out on me. 

I’ve spent a long time feeling like improving healthcare falls squarely on the shoulders of patients.  But I think that doctors can help with this, too.  And they should.  Rather than taking anger and frustration out on an individual patient, talk to Congress.  Explain that while a practice manager used to be a master at insurance, the system is too fractured now and confusing, that it’s impossible to stay on top of it.  And not only does it make it difficult for the doctor and his staff, it also makes it difficult for his patients. 

For patients like me, who had to make seven calls to his office, only to find out that he fired his old biller, which seemed to be the standard line.  Five messages went unanswered, a call to a person told me that they would reach out to their outside biller and she would get back to me.  Weeks went by with nothing.  So despite my disappointment on Saturday, I mentioned it on my way out of the office.   I was told I had to speak with someone on Monday.  I spoke with someone yesterday, and I have been assured that the situation will be rectified.     

But this isn’t how it should be.  This shouldn’t be what patients come to expect as normal.  Every visit shouldn’t become a fight.  Every appointment shouldn’t be approached with trepidation because of how much it might cost or how difficult it will be to make sure that the right amount gets billed to the right insurance. 

I shouldn’t avoid obtaining necessary healthcare because I’m worried about how a doctor will react to me.  Or if they won’t be understanding or compassionate toward my illnesses. 

I’m sick, but I did nothing wrong. 

Doctors spend years in medical school, studying and learning.  But clearly there are still things that aren’t being taught well.  Clearly the non-medical aspects of being a doctor don’t rub off on everyone. 

Next time, I will be strong.  I will fight back.  I will throw down.  And I will stand up for myself.  Because I didn’t ask to be sick, and I’m doing the best I can to live with it, but the fact that I’m sick, on its own, does not give anyone, including a doctor, a right to mistreat and disrespect me. 

It bothers me that despite the fact that I don’t have any years of medical school behind me, my eight plus years of experience as a patient still isn’t seen as being worthy of praise or esteem.  For some doctors, it doesn’t even grant me a seat at the table or even a voice in the exam room.  

I will continue to be outspoken when I find the courage to use my voice.  But doctors cannot remain silent.  They are 50% of the doctor-patient equation.  They must stand up for themselves and they must stand up for their patients.  Getting consumed in the greed and the bureaucracy diminishes us all.  It makes doctors focus more on the bottom line and less on healing and minimizing suffering.  And it cheapens the patient experience.  It makes us bitterer, angrier, and less compassionate, both for our doctors and for ourselves.     

Monday, September 19, 2016

Product Review: SunGrubbies Sun Protective Accessories*

If you’ve been reading this blog for a while, you know a lot about me, including the fact that I hate sunscreen.  Yes, I have lupus.  Yes, I have fair skin.  And yes, I hate sunscreen. 

This is a problem.  Part of me thinks I’m allergic to it, and the other part of me thinks I just hate it. 

But I have been walking to and/or from work since I moved last month (a post on that soon).  It’s only a mile and a half away, which isn’t too bad, but it’s a lot of direct sun. 

… I digress…What brings me to this post are some amazing products I was asked to try recently.  I received SunGrubbies Casual Traveler hat and Sungloves.  What’s great about SunGrubbies is that all of the products contain SPF!  In other words, that’s sun protection that you don’t have to lather or spray directly on your skin.    

So it was the perfect time for me to try sun-related products as I generally do my best to stay out of the sun, mainly to avoid having to use sunscreen – lame, I know. 

I am not a hat person.  Nope!  I hate hats about as much as I hate sunscreen. 

But I might be a hat convert now, or at least a convert of hats that look good on me and truly offer sun protection.  The Casual Travel hat is adjustable, which is great, because I have a small head.  It fits well, and I can still see out from under it.  It’s also pretty darn cute!    


But more than the hat, I love the Sungloves.  They are so lightweight and easy to wear.  It’s hard to describe the material, but they’re very comfortable.  And since they’re fingerless, I can still text and use my phone while I walk – do pretty much anything – but I know that my hands are protected.    


And this has always been a huge problem for me.  Even when I use sunscreen, the tops of my hands always seem to get burned.  I’ll admit, I feel a little Michael Jackson when I’m wearing them, but they are so worth it.  I can also still wear them comfortably with my jewelry on, so I don’t have to fiddle with that stuff or worry about it.       

Both items are also very packable, so I am able to just throw them in my purse, and don’t need an additional bag to transport them in.  Both items would also be great for traveling since they don’t take up a lot of space.

I like the fact that I was able to try these products and use them more for everyday than just for traveling, as I’m not sure I would appreciate them as much, as I don’t travel purely for vacation all that often.    

I know the summer is basically gone, or pretty much coming to an end, but unless the world ends tomorrow, the sun is going to be a thing, and you’re going to need protecting from it. 

Honestly, I have to say that these two products are some of the first that I’ve reviewed in a long time that I can actually see using on a regular basis.  And I have been.     

SunGrubbies has created a code specifically for my readers, so if you’re interested in any of their products, visit https://www.sungrubbies.com/ and use the code NOLUPUS10 for 10% off of your order.

Have safe fun in the sun, kids!

* SunGrubbies was generous enough to provide me with these products for free.  However, it was ultimately my choice to write a review and has to do solely with my personal opinion of the product.

Monday, August 29, 2016

Body Shaming and Chronic Illness

One of the first things I heard when I started this illness journey was that my body was attacking itself.  And that rather than fighting off foreign invaders, my body was mistaking my own organs and joints as things that weren’t actually supposed to be there.

While that provides a somewhat easy explanation for a very complicated process of what’s going on, it’s a profoundly negative thing to be told.  And it sticks with you. 

We are told that our bodies are attacking themselves.  We are told that we must have done something along the way that caused this to happen. 

I’ve never been the most confident person in the world.  I’ve been self-conscious most of my life.  And THEN I got sick.    

But with all of this stuff going on, I never really had to worry about my weight.  If anything, I had to be worried about being underweight.  And then, slowly, my weight crept up.

I felt like I was stuck in a rut.  While I used to look at some pictures of me in high school and think I was chubby, I know now that I really wasn’t.  And I was so fixated on gaining the “Freshman 15” in college that I inadvertently lost 15 pounds.    

At my lowest since high school, when I first went to my rheumatologist, I weighed in at 86 pounds.  I know now that, that definitely wasn’t healthy.  And part of my lack of eating was the amount of pain I was in.  That had a lot to do with it.  It wasn’t that, that was my goal all along, to weigh 86 pounds.  And until about five years ago, I never topped out at more than 98 pounds.  Then things changed.  And the number kept going up and up.  When I went to the doctor in February, I weighed in at 121 pounds.  It was the most I have ever weighed in my whole life, and I was completely disgusted with myself.    

That number on the scale was the kick in the pants that I needed to do something about it.  And it wasn’t just the number on the scale.  It was the way I felt.  It was the fact that I could barely look in the mirror let alone consider letting another human being see me without clothes on.  No one in my life was explicitly telling me that I was fat, but I could tell by some of the looks I got that people thought I had gained weight, and I had.  This doesn’t really hit you until you start losing weight and people tell you how great you look.    

So in June, I joined Weight Watchers.  It’s not so much that I wanted to diet, as much as whatever I was doing myself – mainly eating as many carbs and as few fruits and vegetables as possible – wasn’t working.  Sure, it didn’t help that eight years ago I got sick, two years ago my dad died, eight months ago I lost my job and my boyfriend of three and a half years broke up with me, and I moved back to Michigan; jobless, boyfriend-less, and otherwise confused about where my life was headed.  Who would blame me if pizza became my go-to food? 

But I’ve had to do something, and I’ve tried to look at this whole experience as more of a lifestyle change than a diet. 

But I assure you, there is no judgment towards other people.  I know some people I have talked to have looked at me and said “I would kill to weigh what you weighed at your highest.”  But that’s not what it’s about.  It’s about the fact that I didn’t feel like I looked good, and I didn’t feel good, physically or emotionally.  That extra weight was literally and figuratively weighing me down.  

But slowly, I’m working on turning my negative self-talk into positive self-talk.  I can actually look at myself in the mirror again, and shocker, kind of like what I see.  I’ve lost almost 13 pounds, which puts me almost at the high end of my goal.  I know 13 pounds isn’t a lot, but it is for me.  It’s actually 10% of my starting weight.  But honestly, and I keep having to tell myself this – the pounds don’t matter, the percentage doesn’t matter, as much as how I feel, physically and emotionally, matters.    

I hate when my rheumatologist asks me if I’m exercising.  Because it’s not code for “are you moving enough?”  It’s code for “get off your butt and move, you fat ass”.  Trust me, I’ve known him long enough to know that, that’s exactly what he’s saying.  And rather than retort back, “And what’s your excuse?” I smile and nod, and pretend that what he said hasn’t hurt me at all, when clearly, it has. 

I don’t think I’ll ever hit below the 100 pound mark again, but who am I kidding?  I’m 31 years old.  It’s not as easy as it used to be.  Seriously, at 25, it all started going downhill. 

So from the very beginning of our illness journeys, we are fed information about our bodies that our profoundly negative.  And we are expected, despite the pain, despite the stiffness, despite the medications and their side effects, despite whatever else in life might happen besides our illnesses, to rise above, and do it with a smile and all while looking great, all like you would never know we were sick.