Doctors Aren’t Always Right But Some Doctors Just Want Their Money (10 Months Later)

Last June, I went to the worst rheumatologist appointment ever (Read: The Storm After Years Of Calm).  And I thought, now that I have a new rheumatologist that I like, that I had put it behind me.  But to my surprise and chagrin, a few weeks ago, I received an explanation of benefits from my insurance company stating that I owe over $300 for labs that my insurance plan isn’t paying for.

First of all, why am I getting billed for this now?  It is April of 2018 and this appointment occurred in June of 2017.  Second of all, no, just no.

I will not be taken advantage of this way, especially since after the tests were run, I found out what they were and they were totally unnecessary.  Tests were run for multiple myeloma (makes no sense), and for a doctor that didn’t seem to believe I have lupus and RA, she ran no confirmatory tests for the illnesses that I ACTUALLY HAVE (Read: I Do Have Lupus And RA After All...).

So I contacted the person who is our designated contact at the insurance company.  She proceeded to attempt to school me on what a deductible is and that mine hadn’t been met yet, hence the charges.  I calmly explained that I know what a deductible is and all of that, but that’s not what I was questioning.  I asked if I could appeal, and was told that I had 60 days from the date of service to appeal.  I asked how it was fair that I could be billed for services 10 months later but only had 60 days to appeal?  We continued to go back and forth, with her being incredibly dismissive and disrespectful to me.  I finally asked to be contacted by a supervisor.  I’m still waiting.

(Also note that since this appointment took place last year, it would have counted toward that deductible, which I met.).

I also contacted the person that administers our insurance, and was told that my best bet was to contact the provider.  I explained that in order to spare myself further mental anguish, that was definitely not an option.  In fact, I have attempted, on at least six occasions, to contact the medical group administration, without success.

I have no intention of engaging with this provider ever again.  And I have no intention of paying any bill I receive now for lab work or anything else associated with that appointment.  It’s nearly a year later at this point.  And I was trying to move on from that appointment, which set me back a lot, both physically and emotionally.

It is unbelievable to me that doctors can provide subpar care and nothing can be done about it, unless it gets to the level where you have a lawsuit.  It seems that, that is the only way that patients can get any sort of vindication.  I can’t reason with a terrible provider.  I can’t get a direct line to anyone at the office above the provider.  I can’t get any assistance from my insurance company.  So what am I supposed to do?

I would love to work for an insurance company and advocate for patients in my position.  I would love to be able to contact a provider and say “you have to write off this bill because the patient was not treated well, and neither them nor we are going to pay for it.”

Clearly, there is a reason why I have not and will never see this provider again.  It is not like I have gone back multiple times to see her.  And I pay all my bills.  As long as the services are rendered properly, I have no problem paying.  But when services are rendered far below where they should be, I am going to fight that, especially when I had assumed that everything was done and paid for.  It’s a bit strange that 10 months later they are coming after me for money, but this provider has never contacted me to see if I was coming back to see her again or not.  I guess the loathing was mutual.

It’s also interesting because my insurance is claiming that they’re not paying due to the diagnostic codes.  Which brings me back to the beginning.  Of course, because the tests don’t make sense for the diagnoses I have and am being (successfully) treated for.  So you see, I am being sent in circles.  Once I knew what tests were run - after they were done and I saw the results - I knew they were totally unnecessary.  But this doctor was so convinced that she was right and I was wrong that she went on a very pointless (and expensive) fishing expedition.

And this is where the medical profession and the insurance industry get it wrong.  That this doctor’s experience in medical school trumps my near decade as a patient living with lupus and RA is absolutely ridiculous.  And that I should be the one to have to pay for the fragility of her ego is even more ridiculous.  She made an error.  It was a grievous one, but thankfully I’ve had a (correct) diagnosis for long enough to know that she was wrong and that I wouldn’t put up with that kind of treatment from any physician.  So I cut my losses, now she needs to cut hers.

I Do Have Lupus And RA After All…

16 days after my appointment took place, the new rheumatologist that I saw called me with my test results.  Keep in mind that these results were available on the patient portal, which I was given access to immediately after my appointment.  So in reality, these results were ready between one and five days after my appointment took place.  They were results that I had already seen. 

Results that showed the following:

-         Elevated ALT

-         Elevated AST

-         Elevated ESR

-         Elevated Hematocrit

-         Elevated Hemoglobin

-         Elevated Potassium

-         Elevated Protein

-         Elevated Sjogren SSA Antibody

-         Elevated Vitamin D

-         Decreased Lymphocytes

But that’s all totally normal, right?  She also ran tests for multiple myeloma.  She didn’t even tell me she was doing that.  Thank you, Dr. Google.  If that was really the case – if I had cancer that had gone untreated for nine years – I’d probably be dead.    

And what she didn’t test for was also telling. 

No ANA.  No Rheumatoid Factor.  Confirmatory diagnostic tests that should have been run, especially since in person, she didn’t believe that I have lupus and RA.   

Why it took her 16 – yes 16, not seven, not 10, not 12 – days to contact me, especially when I had left several messages for her, is beyond me. 

Of course, when I talked to her on the phone, she had changed her tune a bit.  She told me on the phone that my diseases are stable.  And I really wanted to say, “Oh!  You mean the diseases you told me that I may or may not have?”  But I didn’t.  Inside I seethed.  But over the phone, I tried to remain calm.  With everything she said, I replied with something like “okay” or “uh huh”, the way you respond to someone who you’re supposed to respect but don’t. 

The first time she called me – Day 16 – was on a workday at 10:15 a.m. on my cellphone, so I missed the call since I can’t have my cellphone out at work.  She had my work number and I had told her she could call it, but she didn’t.  It’s like, yes, I’m sick, but I work.  Sorry if that’s so hard to believe.  We finally talked on Day 17.  But I wasn’t counting or anything.  I’m immortal.  I’ve got nothing but time.

She also gave me numbers from the labs that were wrong – I had seen them all already and had pretty much memorized them.  And someone kept coming into her office while we were on the phone and interrupting her, so she kept telling me to “hold on.” 

Not only did she have no regard for me as a patient, but she also had no regard for me as a person. 

I knew that nothing she would say would come as a surprise.  And nothing she could say or do at this point could hurt more than our first encounter.  And nothing she could say or do could repair the damage that was done during that first encounter.

To the point where that first encounter will likely be the only encounter.  It was the first and likely the last.  I wish I could say it never was.  But it’s not that easy to shake off.  To be told after nine years that you don’t have the diseases you think  you have, and that you’ve been misdiagnosed and treated incorrectly, when the person telling you this has no evidence to base that determination around other than some mysterious beef with your old rheumatologist, it’s truly the stuff of nightmares.  It’s the kind of thing that I know happens to others, but I didn’t really think would ever happen to me.  But clearly I’m not immune.  And clearly after all these years of craziness, I can still be surprised…in a bad way...  

I entered that office with hope and I left with desperation.  Doctors have power, and this particular doctor used that power for evil rather than for good.  I’ll never really know why, but I’m 99% certain that she is not the doctor for me.    

I’ve already made an appointment with a different doctor at a different practice.  I made that appointment on Thursday and received the paperwork in the mail on Saturday.  The doctor’s office that I went to claimed to have sent me their paperwork twice and I never got it.  I’m noticing a difference already. 

I understand that everyone wants to be the hero in someone’s life.  But after nine years of living with lupus and RA, I am never going to be that person for this doctor, or any doctor.  I need management, not diagnosis.  I need compassion, not reaction.  I’m not a science experiment.  I’ve been there and I’ve done that. 

This is my life.  And lupus and RA are an excepted and recognized part of that life. 

I knew in my head and my heart that this doctor was wrong.  She made pronouncements without evidence or reason.  And when it came down to it, she wouldn’t even admit that she made a mistake.  All she could do is tell me what I already knew.  That my diseases are much more stable than they were nine years ago.  That they are in a different state, and yet they are same.

I have lupus and RA. 

July of 2017 is no different than April of 2008. 

Same story, different day, different month, different year. 

And I can breathe again. 

You can’t throw the baby out with the bathwater, not when the situation doesn’t call for that.    

This chronic illness thing is not a static journey but an active one.  No matter how much we hurt or how fatigued we are, we go on.  And we deal with so much crap along the way.  We let others inflict hurt upon us in the name of health.  We let doctors literally “play” doctor.  We find people we can trust, and sometimes we find people that we cannot.    

I knew I didn’t need Arthritis Foundation brochures about lupus and RA.  I could have written those brochures.  And if you think about it, I spent eight years in graduate school and I’ve been sick for nine years, so that’s 17 years worth of experience.  I think that might just trump medical school.  And if that doesn’t, well, it’s my body.  I think I am more of the expert in that than anyone. 

If anyone’s keeping score, I won this round.  But I’m back to the drawing board as far as rheumatologists are concerned.  I can only hope that the next appointment with the next new doctor goes better than the last one did. 

(I also had an issue with my insurance and needed a different prescription for one of my meds.  Neither she nor her office could seem to be bothered with that.  Somehow, my old rheumatologist took care of it.)

And in case you’re are wondering or missed it, I had an incredibly successful nine year relationship with my last rheumatologist – you can read about it in the post, “A Thank You Note To My Rheumatologist”.  Losing him is literally the only reason I would put myself through the hell of finding a new doctor.     

Bye, bye brochures!  Enjoy your time in the landfill.

“Nobody said it was easy,

No one ever said it would be this hard.”

-         “The Scientist,” Coldplay

10 Things Phlebotomists Should Never Say

When I first got sick, I was totally scared of needles.  After getting 27 tubes of blood drawn – yes, I’m not exaggerating, I counted before I passed out (just kidding, I didn’t pass out, shockingly) – at my first rheumatologist appointment, that knocked the fear out of me real quick.

But that doesn’t mean I enjoy getting blood drawn or that it is a particularly pleasant experience.  In fact, most of the time, it’s not.  I’m a hard stick and I’ll be the first to admit that.

After my recent hellish appointment with my new rheumatologist – read until I fire her – the phlebotomists at her office stuck me four times to no avail.  I’d like to blame it all on the fact that I hadn’t eaten lunch or had anything to drink because I ended up spending three hours sitting in the doctor’s office.  But the next day, I went to a hospital lab in the morning, after just eating and drinking, and got stuck four times, as well.  Thankfully, at least the second time around, they were able to get all the blood they needed.

But in the process, between both labs, a lot of pretty dumb stuff was said.  Most of it isn’t stuff that I haven’t heard before.  But the more I hear it, the more annoyed I get. 

So, without further ado and in no particular order:

1.       “You don’t have any veins.”

Clearly I have veins.  I am alive.

2.      “You really are a hard stick.”

My body may be a lot of things.  Weird is definitely one of them. And unpredictable.  But one thing I know with certainty is that I AM A HARD STICK!!!  Don’t say I didn’t warn you.

3.      About those attempts where no blood flows, but as soon as they pull the needle out, out comes the blood:

“Well, at least it’s bleeding now.”

Literally, if another phlebotomist says this to me ever again, I will probably punch them.  This isn’t cute or funny.  It’s called DO YOUR JOB and GET IT RIGHT.

4.      “I bet that didn’t hurt at all.”

Yeah, well, that’s something that I wouldn’t bet money on, because you will lose that gamble.

And don’t ever, ever tell me how I should or should not feel.  Until you’re sitting in my seat, having a stranger poke and prod you, you have no idea what it’s like.

5.      “Can you straighten your arm more please?”

No I cannot.  I have ARTHRITIS.  What part of that is so difficult to understand?  Thanks for asking nicely though.  You get an A for effort and an E for execution.

6.      “Are you sure you’re okay/don’t want any juice?”

I’m super, thanks for asking.  But in reality, if you really cared, you wouldn’t ask that question because you know that the answer is “no”.  There’s nothing enjoyable about the experience, whether it goes “well” or terrible. 

I know that you just want to make sure that I’m not about to pass out and hit my head on the floor and make your job even more difficult than it already is. 

This isn’t my first rodeo.  I’ve never passed out from a blood draw and I’m not about to start now.

7.      “I’m going to try one more time…”

Don’t get me wrong, there’s nothing I love more than getting stuck with a needle, so I could let you poke me all day if you really want to, but if you’ve tried twice and failed, you’re out.  Do not pass go, do not collect $200.  And I don’t care if the lab you work for allows for three or four sticks per phlebotomist.  If you try twice and get nothing, there is a high likelihood that you won’t get anything no matter how hard, or how many times, you try. 

8.     “Wow, the last lab did a really bad job.”

You’re only allowed to say this if you do an arguably better job.  So in theory, if the previous lab stuck me four times and didn’t get any blood, and you stick me four times and get blood, you did a slightly better job.  But to me, unless you get everything in one or two sticks, you haven’t earned the right to bash whoever maimed me previously. 

9.      “You’re going to feel the teensiest, tiniest, little prick.”

And you’re just a prick, no size required.  So I guess it all balances out in the end.

10.  “That’s going to leave a mark.”

I know I bruise easily, and in some ways, it comes with the territory.  But if you’ve stabbed me in such a way that you can already tell I’m going to bruise, we have a big, big problem. 

So please don’t state the obvious and don’t pat yourself on the back for a job NOT well done.  Sorry if I’m not signing your praises.  Sorry if I don’t want to see you ever again.  Don’t quit your day job.  Oh wait…this is your day job…

So there you have it.  If you’re chronically ill, you’ve probably heard some variation on many of these phrases.  And if by chance a phlebotomist or future phlebotomist happens to be reading this, please don’t take a page out of this book.  This is a guide of what not to do. 

Sorry if I sound angry.  But if something had been done to me unwilling and without my consent, and I had the bruises pictured below, it would probably be considered assault.  So forgive me if the routine is starting to wear on me. 

  

Last Week’s War Wounds

#thecarnageisreal

It’s all a little too reminiscent of That Time I Got Manhandled By A Phlebotomist. 

That Time I Got Manhandled By A Phlebotomist

The scene of the crime...

Having dealt with chronic illness for over eight years, you would think by now that I wouldn’t get phased by blood draws. 

But I recently had a particularly bad one that was enough to put me off of it for a while. 

Apparently, when I saw my rheumatologist at the University of Michigan Hospital at the beginning of August, the lab there did not do all the tests that my doctor ordered.  I’m not sure how that is possible since it was all sent electronically, but they didn’t.  I was also told that because of one of the medications I’m on, I have to get my blood drawn every other month, even though I didn’t have to do this with my last doctor, who was the one that put me on the medication. 

So in order to get the rest of the labs done and set up the standing order, I went to the lab at a local hospital near me, as it’s not realistic for me to go all the way to Ann Arbor just for a blood draw. 

I expected that this would be a routine blood draw, but not so.  (And by routine, I mean I know that I am a hard stick) 

The first phlebotomist spent about 10 minutes feeling around for veins in both arms.  That was a red flag to me.  I would much rather have had this person feel around and then give up, rather than try twice and fail miserably. 

The first time she tried, she got the needle in and proceeded to move it around.  Like really move it around, to the point where I was ready to scream, to the point where I thought if it was possible for the needle to come out the other side of my arm, it would.  Finally, she pulled the needle out.  But I’m not really sure why she couldn’t get blood from that area because of the amount of blood that proceeded to flow from my arm when she took the needle out.  

Then she asked if she could draw from my hand.  If you stick a needle in me and draw blood from my hand, fine, but if you stick a needle in my hand and get nothing, we definitely are not friends. 

After that, she said she would get someone else.  Yeah, good idea lady. 

The second person came in.  She asked where they normally draw blood from and I showed her the same spot that I showed the first woman, who opted to do her own thing.  The second woman went in the spot I showed her, and sure enough, blood came out, albeit slowly.  She asked me if I drank water.  I told her that if it was about how much water I drank that day, the blood should be flowing out of me. 

And we won’t even talk about the fact that they started decanting the blood into vials and the second woman proceeded to get my blood everywhere.  Well, we will talk about it because it sucks.  It took hard work to get that blood and then you go ahead and spill it all over the place?      

The second person asked if I was okay and needed juice.  I replied that I was fine and didn’t need juice. 

But in reality, I wasn’t fine.  I left the lab pissed off and frustrated.  I didn’t need juice.  I needed a break.  I needed to get out of there. 

I need to escape from the monotony of it all.  Actually, it’s not monotonous.  It’s always an adventure, and that’s what really gets old about it.  In reality, the routine is for nothing to actually be routine or ever go as it should.

And this situation was just too much.     

It feels like a profound violation.  Normal, healthy people don’t allow things like this to happen to them.  But as a sick person, I’m supposed to sit there and take it.  Without question.  Without argument.  And definitely without anger or frustration. 

Is there a glamorous side to chronic illness?  Some people try to find it.  But right now, I’m not seeing it.  I didn’t sit there with a smile on my face despite the pain.  I bit my lip and gritted my teeth.  But more than anything, I wanted to punch the phlebotomist in the face.  I wanted to pull the needle out myself and tell her I was done.  I wanted to walk away.  I wanted to call my rheumatologist’s office and tell them why I was choosing to be “non-compliant”, and why they can’t make me get my blood drawn, even if they threaten to take my medication away. 

The reality is, all of these small violations take their toll.  I am used to being stuck multiple times per blood draw, I am used to bruising after a blood draw, I am used to lab techs saying stupid things to me, like telling me that I have to put my arm out straighter even though I have arthritis and cannot physically accommodate that request. 

But when all of those things happen at once, when I am attempting to do my duty as the dutiful patient, and it all goes horribly wrong, it’s just too much. 

So yesterday’s anger and frustration has transferred to today.  And so I’m writing the shit out of this experience because I don’t want to stay angry.  I know that there are bumps in the road.  I know that some days are easier than others.  And yesterday was a bad day.  My body reminds me almost daily that I’m sick.  So these not-so-subtle reminders that I truly am sick are sometimes just too much.    

Maybe the bruises on the outside show a fraction of the physical pain I feel on a daily basis and the emotional pain that sometimes occurs as a result. 

I wish I could say that I got in a fight.  I wish I could say, “You should see the other guy”.  But the other guy doesn’t care.  The other guy has education and training to draw blood.  But even I can stick a needle in myself and get nothing out.  Maybe I should learn how to draw blood.  Is it possible to draw your own blood?  If so, I’d probably have about the same success rate at the phlebotomist who manhandled me.  But at least I’d be doing it to myself and not allowing someone else to do it to me.   

My Story On HealthCentral

I’m so excited to share with you My Story, which is being featured on HealthCentral.

You can view the multimedia story here:

http://www.healthcentral.com/storytelling/mystory/entry/56ac223a4ee9b1a6393515f0

My Life Through Someone Else’s Eyes

I’ve been feeling kind of down lately and there’s a lot I’ve been trying to deal with.  I’ve needed a pick me up. 

I’ve allowed other people to treat me badly, and what I’m realizing is that I don’t need those people in my life.  I can make myself feel bad about myself all on my own.  I don’t need other people to do it for me, especially when I don’t deserve it. 

Through all of my traveling this past fall, I had a lot of amazing experiences, and it was the only time that I’ve really been happy in the last several months.  Two have been particularly special.

The first is that, because I gave an ePatient Ignite talk at Stanford Medicine X this year, Stanford sent a documentarian to New York to videotape me, sort of chronicling a day in the life of living with chronic illness, for an introduction video that they played before I went on stage to speak. 

I have to be honest, I was really nervous about this.  The last time I had a video camera in my face, I was in sixth grade, working on a group video project, and every time the camera was turned on me, all I could do was laugh.

It’s also a bit stressful to let a stranger so intimately into your life without really knowing them ahead of time.

We were able to coordinate so that the documentarian came to my doctor’s appointment with me.  I had to get special permission from the hospital and my doctor, but I think it was great to see that aspect of my life. 

In the end, it was an amazing, adrenaline-filled day.  And I definitely made a new friend in the process.  Filming with the video person actually felt really natural, and we bonded and talked a lot in the moments that we weren’t filming.   

So I wanted to share that film with you.  I was trying to wait to share it along with my Ignite talk, but I’m not sure when that is going to go up. 

The other experience was becoming a member of Regina Holliday’s Walking Gallery of Healthcare.

I’ve been wanting to be a part of it for many years, and the day finally arrived. 

Coincidently, the blazer arrived right as I was leaving for my last conference of 2015, so I feverishly opened the box and took it with me.  I wore it, and will continue to wear it, with pride.

I had sent Regina some ideas about my story and what I thought that might look like through art, but I never could have imagined that my blazer would turn out the way it did.

The painting is of me, traversing a ladder.  Half of me is wearing a graduation gown and the other half of me is wearing a hospital gown.  The ladder evolves into two rungs, one that is made of diplomas and the other that is made of bones. 

It’s so profound.  And it tells my story so perfectly.  I’ve been saying for the last eight years that I’ve been living two lives and working two full time jobs, being a student and being chronically ill. 

It’s nice to hear that I’m an inspiration to others, even though that makes me a bit uncomfortable.  But it’s nice to be able to see myself through someone else’s eyes and genuinely like, and am proud of, what I see. 

It’s a pick-me-up I really needed, and I’m so glad that I can view these as often as I need to, to remind me of how I got here and why I do what I do.  

#ChronicLife Redux

Britt, TheHurt Blogger, came up with this idea to live tweet her life with chronic illness on Twitter for 48 hours.  I was so inspired by the amazing interactions that were created because of it that I decided to do my own version of #ChronicLife. 

I will include all of the tweets here so that you can see them if you missed them while I was live tweeting, or if you want to take a look at them again.  They are presented with the most current listed first.   

I learned a lot from this experience.  I learned that there a lot of people out there, aside from my mom, on both FB and Twitter that follow my story.  I learned that my disease is not in control and that there is a strong likelihood that my current medication regimen is no longer working. 

More than anything, though, I was reminded once again about the robust chronic illness community that exists online, and that has helped me so much over the last seven years.

This experiment went beyond lupus and RA, and included others living with other chronic illnesses, as well. 

This experience is so much more than a hashtag.  It is a movement toward greater awareness and advocacy, so that those with other chronic illnesses can see that our experiences are similar, and so that those without chronic illnesses can get a small glimpse into what our lives are like, living with chronic illness.   

I truly want to thank everyone who supported this effort, who favorited and retweeted, and who followed along on the journey.  This wouldn’t have been possible without all of you.   

Thursday, February 12, 2015

Just want to thank everyone who joined in on this #ChronicLife journey the last two days. I’m grateful for the support. Will blog next week!

I hope people don’t view the last two days as me simply complaining. Wouldn’t be doing this if my life wasn’t impacted by illness. #ChronicLife

Zonked out again. Just got up for meds, etc. Wondering when this cycle is going to stop. Work/school, eat, sleep is all I do. #ChronicLife

Veggie gumbo. BF made a double batch over the weekend so we’d have leftovers for a few meals this week. #ChronicLife

This is the face of pain. Sexy, right? I wonder where this falls on the pain scale. #ChronicLife

Today was a real struggle. Lots of pain and fatigue and I pushed myself too hard. Looking forward to the weekend. #ChronicLife

Invisible illness sucks. I could have used some extra help and kindness today, but I look young and healthy. #ChronicLife

Do I look as tired as I feel? No spoons left whatsoever. #ChronicLife

  

 Two classes down, one to go. And I need a nap badly. Really badly. #ChronicLife

One class down, two to go. And all I want to do is go to bed. #ChronicLife

I have come to find cross-body bags more comfortable than regular one-shoulder bags, but school… #ChronicLife

 10 minute walk to subway, 30 minute subway ride, 30 minute train ride, and 20 minute walk to campus. Finally at school! #ChronicLife

Escalator was off and didn’t feel like waiting for the elevator, so I walked up the escalator. Big mistake! Could barely walk. #ChronicLIfe

Good morning! Love my @Keurig so I don’t have to battle with a heavy coffee pot. #ChronicLife #coffeeaholic

 Didn’t sleep well at all. Will probably be running on fumes today. #ChronicLife

Wednesday, February 11, 2015

Signing off for tonight. More #ChronicLife bright and early in the morning. Are you all ready for school? Don’t worry, I’m not tiether.

As is my MO lately, I crashed at 8:30. BF just woke me up to brush my teeth and take my meds. #ChronicLife

 Roasted veggie pizza and veggie meatballs. Courtesy of the BF. He’s so good to me. #ChronicLife #mymancancook

Post shower #selfie. I was too tired to shower this morning. Now it’s pajama time. #ChronicLife

As tired at the end of the day as I was at the begging. That means fatigue is bad. But at least it’s still light outside. #ChronicLife

This struggle is for real. Even the good days can be a struggle. Working with illness is a struggle. We power through. #ChronicLife

There are bright spots. This makes me happy beyond words: http://medicinex.stanford.edu/medexed-speakers/... #ChronicLife #medx Crazy that people care about my story

You’re hearing it here first: After being on my longest running medication regimen, I believe it has stopped working. #ChronicLife #realtalk

I’m exhausted already. This is one of the most difficult part of living with these diseases. Battling fatigue. @ChronicLife

Been awake and morning meds have been on board for two and a half hours. And I still feel like I am wading through jello. #ChronicLife

10 minute walk to subway. 25 minute subway ride. 20 minute walk to work. Is it bedtime yet? #ChronicLife

Only had a seat on subway for half the time. Took all my energy to hold myself up. #ChronicLife

No makeup this morning. No energy and moving at a snail’s pace. I’ve got to conserve save my spoons for the commute. #ChronicLife

Let my #ChronicLife commence. Up, but not at them. Super stiff and still in zombie.