Wear A Damn Mask

I’m putting this out there because it needs to be said. I can see that as a chronically ill person and someone who is #HighRiskCovid19, as the world opens up, mine will be getting smaller. I’m seeing pictures of people on Facebook unmasked in bars and crowds. I guess even going to some peoples’ houses will be off limits because of the number of places they’ve been and the number of people they’ve been around, unmasked.

Just remember, this isn’t about you. I wear a mask for myself, but I also wear it because I would never want to be that person that is unknowingly sick and gets someone else sick. I care enough about other people to wear a damn mask. I read something that said if you are refusing to wear a mask and you think Black Lives Matter, think again, since COVID is hitting Black communities worse than many other groups. So if you really think Black Lives Matter, show it by wearing a mask.

I know that America is built on the ideal of individualism. And clearly, this ideal may lead to the downfall of America. Rather than think of wearing a mask as a threat to your own freedom, why don’t you think of it as a sign of solidarity and respect to wear a mask? I’m not telling anyone how to live their life, but I’m telling you how I’m going to be living mine. Because rather than go to the bar or eat in a restaurant, all I want to do is see my family and close friends. My sister is moving to another state and I’ve barely gotten to spend any time with her in the last three months due to COVID and that absolutely sucks. I think you’ll survive some missed nights out at the bar. I’ll never get back missed time with the people I love, and given what happened to my dad, I know how precious time is.

So for now, I guess my trips to the grocery store every other week will continue to be my main mode of excitement for the foreseeable future. And if I get invited somewhere, it’s likely my declinations will become more frequent. With chronic illness, it’s always a possibility that I’ll have to decline invitations and cancel plans at the last minute, but as much of a pain as that was, it was on my terms. It’s because I didn’t feel well or was in too much pain to partake in an activity. Now, I will be doing this for reasons external to me. I will being doing it because a friendly invitation will be sidetracked by concerns over where you’ve been or who you’ve been in contact with because you’ve established a pattern of behavior that proves who and what you care about, and it’s clearly not me or anyone else.

I’ve seen a lot on social media of people with Cystic Fibrosis posting pictures wearing masks and a pulse ox, and showing that their oxygen levels are fine, so yours should be too. I’ve also seen the fake card that was created by people trying to exploit the Americans with Disabilities Act (ADA) by claiming they have medical conditions that prevent them from wearing a mask. If that’s true, don’t wear a mask, but if you’re making stuff up, wear a mask. It’s that simple.

Wearing a mask could mean the difference between quarantine ending and life slowly returning to whatever the post-COVID “new normal” will be. Not wearing a mask could mean continued, unfettered spread, another round or multiple rounds of full lock down, and more deaths. 

If you’re not wearing a mask simply because you don’t feel like it, or you think rules don’t matter for you, or you feel that wearing a mask is an affront to your freedom of expression, remember this moment. Remember when you were called on to do something for someone else and instead you put your own needs above everyone else’s. Remember when you decided that a night at the bar was more important than the lives of anyone you may come into contact with. Remember that thinking you don’t have to wear a mask because I will is inherently ableist. And remember that not wearing a mask flies in the face of Black Lives Matter.  

In a nod to Michigan Governor Gretchen Whitmer, maybe you couldn’t “Fix The Damn Roads,” but maybe everyone can learn to “Wear A Damn Mask.”

(And I know someone will say that I was unmasked in the picture I posted on Facebook with my husband wearing our Jews For Black Lives shirts. True. But I was outside and the only other person there, who took the picture, was my brother-in-law. We took our masks off, more than six feet away from him, he took the picture, and we put our masks back on.)

Pharmaceutical Company Events and Chronically Ill People: Dos and Don’ts

I have had the opportunity to attend a lot of events as a result of my blog.  Many of these events are hosted by pharmaceutical companies.  Even the most “patient friendly” or “patient focused” events aren’t perfect.

I’ve had several experiences over the past year that have left something to be desired.   

Last summer, I was attending an event in Miami.  The turnaround time was 36-hours.  I knew this was crazy.  But the reason I didn’t fight it was because the one other time I asked if I could extend an offer an additional night due to the quick turnaround time, I was very firmly rebuked – only to find out later that other attendees had asked for the very same thing, and got it.

Back to Miami.  The hotel was absolutely massive.  So when it came time to meet the car to take me to the airport, I couldn’t find it anywhere.  I was so frazzled.  A chronic friend of mine who was also attending, got on the phone.  It took us almost 45 minutes to find the car.  Finally found the car.  Got to the airport.  The gate was changed four times, necessitating me having to run through the airport, and the flight was ultimately cancelled.  I spent six hours waiting in line, only to have to get out of line when I was five people from the front to make sure I caught the flight I booked on another airline while I was standing in line. 

All in all, the event was a disaster.  When all was said and done, I was up for almost 60 hours straight.  I had to take a day off of work to recuperate.  This experience still gives me nightmares.    

I understand that event planning is difficult.  And I’m sure that this is even more complicated when you are working with chronically ill people.  I also know that some of this was out of the control of the event planners, but some of it was not.     

Do

1.       Include chronically ill people in the planning of the event.

Nothing about us, without us, right?  We know best what we need, so why not include us in the planning?  Why Miami at the end of June?  That heat and humidity really isn’t conducive to having RA and being a functioning human.  But they didn’t ask, so how would the event organizers have known that?  This might not hold for events that cater to multiple illnesses, but for events that are focused on one illness group, I think this is imperative.

2.      Provide a welcome or swag bag that includes snacks, but don’t provide too much stuff that attendees will then have to figure out how to get it all home.

I love getting swag at conferences.  Especially snacks that I can take on the plane with me when I leave.  But a huge pet peeve is being given so much stuff that I don’t have room to pack it.  I’ve learned to travel light, especially when attending events that have a quick turnaround time, so I usually have very limited space available for giveaways and the like.

3.      Include breaks, and let attendees know that it is okay to remove themselves to take breaks if they need it, in addition to assigned break times.

You might not think you have to tell patients this, but I always feel relieved when this is said out loud. 

4.      Have the event and accommodations in the same location.

This makes it much easier for attendees so that they can go back to their room and rest if they need to.  If you can’t hold the event and accommodations in the same location, provide a “wellness room” or other place that attendees can go to relax, refresh, and even nap.

Don’t:

1.      Make the turn-around time too short, and make travel arrangements that make sense for the attendee.

It’s not as easy for chronically ill people to bounce back, so it’s unrealistic to expect someone to spend such a short amount of time in one place, and so much time traveling.  When most chronically ill people ask this, it isn’t because they’re trying to take advantage.  Additionally, while assigning someone to the earliest flight out and latest flight back might seem like doing someone a favor, this is not convenient for many chronically ill people.     

2.      Have the event at a venue that requires a lot of walking.

You don’t want to tire people out just from them walking from their room to the part of the hotel where the event is being held. 

3.      Assume that when the event is over, your commitment to the attendees is over, too.

While not everything that happened was the fault of the pharmaceutical company, you can’t just fly someone out to a strange city, hold an event, and then say goodbye, never to be seen or heard from again.

4.      Treat people differently. 

You can’t say that one person can stay an extra night and then tell someone else they can’t.  Obviously, I’m not referring to people that have specific dietary needs and other things like that.  But if one person asks to stay an extra night because it’s difficult for them to travel, and someone else asks the same, you can’t say “yes” to one and “no” to the other.  Plus, we know each other and we talk, so there’s that. 

With everything that happened after the event was technically over, such as not being able to find the car and having my flight canceled, I shouldn’t have been on my own at that point.  There should have been someone I could have contacted who could have helped me.  It didn’t help that by the time my flight was canceled, it was after 11 p.m.  But still…

Ultimately, I did get reimbursed for the flight I purchased, and the company got reimbursed for the flight I didn’t take, because I made sure they did. 

I left feeling like I might never attend an event run by this particular pharmaceutical company again.  And that makes me sad.  But I can’t miss work to attend an event, only to miss more work because things went so poorly that I need to recover from it.  It wasn’t an oh wow, my mind was so blown that I need time to process kind of recovery.  It was more of an I’m so stressed and my brain and body are so fried that I need rest kind of recovery. 

I never want to seem high maintenance, but if high maintenance means looking out for myself and caring for myself, then I guess that’s how it is going to be.

And I also don’t want to be seen as ungrateful, because I am so honored and grateful for all of the opportunities I have been given.  But, and this is a big but, events that go the way this one did suggest that this company doesn’t know how to work with chronically ill people, or hasn’t sought input from chronically ill people about how an event that includes them should be run.

I’ve also had a few more recent experiences that have left something to be desired.

1.       In one instance, I had one screening call for a pharma advisory board.  Then there was a second call, which because of the time options, I had to take in my car during my lunch hour.  I didn’t make a big deal about that since it was a relatively short call.  A third call was scheduled, but all time options during the day, and for a significant chunk of time.  Even though they are paying for this third call, like I said, it’s during my workday.  I emailed the organizers to point out that all of the options were during the workday.  So what am I to take this to mean?  Because I’m chronically ill, I shouldn’t work?  Or that opportunities that come around here and there should take precedence to my full-time day job that is consistent?  I have struggled with having to say no to things, but this circumstance is really forcing my hand.  The big problem is that I have to take unpaid time for this – even though the call is paid – because I have no paid time off left because I’ve exhausted it going to doctors’ appointments. 

2.      In another instance, I was asked to be part of another group.  I jumped at the chance.  I didn’t hear anything finalized, so the week the event was supposed to take place, I reached out to find out if it was happening, and was told that it wasn’t.  I was then asked which of two dates would work for me.  At the time, I said they both did.  Again, several weeks went by and I didn’t hear anything.  Because I’ve been dealing with some health issues, I ended up having to schedule an appointment for one of the dates, so I emailed letting them know that I would only be available the one date.  I then received an email that they had finally decided on a date, and it wasn’t the one that I could attend.  So thanks for playing.  While I don’t expect events to be rescheduled because of me, I don’t appreciate the lack of care for my schedule.  No one reached out to say the originally scheduled call wouldn’t be happening until I asked. 

Does any of this sound patient-friendly or patient-centered?  Not to me.  Being patient-centered means more than bringing patients to the table once a year.  It means more than throwing money at patients, but treating them like crap.  It means really understanding what patients go through and experience, and the struggles that we face. 

Call it FOMO (fear of missing out), but I have to call out a bad opportunity when I see one.

And here’s a really, really important tip:

Don’t treat people who are going to blog about you like crap.

I’m not going to lie.  I hold organizations and companies that work with patients to higher standards of how they treat patients.  And unfortunately, a lot of times, they fall short of the mark. 

I had originally written this post for another site that I blogged for, but they didn’t post it because they didn’t want to damage their relationships (read money) with big pharma.  And then they told me I couldn’t write for them anymore.

Mike drop.

Leslie out.   

(So I’ve really struggled about whether to add to this post and share it, but because there continues to be a glaring lack of “getting it” that I just can’t handle anymore, I felt like it needed to be said.  I hope that people will read this and take it turn out.  Patients want to help.  I want to help.  But I can’t help at the expense of myself.  So please, let myself and other patients be part of the solution.  Let us help pharma.  Helping pharma starts with including patients in a meaningful way.)

When You Are “Protected” From Your Protected Health Information (PHI)

I recently had to obtain my medical records from the rheumatologist at Mount Sinai Hospital that I saw while I lived in New York, and the records for my two most recent appointments with my now technically “old” rheumatologist at the University of Michigan Hospital.

Recall that I had obtained all of my other previous medical records from the University of Michigan before I moved to New York, and that was total chaos to the tune of $361.26 (Read: What Happens When Your Medical Records Aren’t Yours?).

Well folks, they’ve done it again.  And by “they,” I mean the medical industrial complex, the geniuses who got the idea that patients should be charged to obtain their own protected health information.  That information is so protected that even, I, the patient, cannot have easy access to it.  That is, of course, unless I pay for it.  So I can access it, but it will cost me more time and money, over and above the cost of living with illness itself.      

This time, I legit don’t care about the money.  Between the two requests, I’m out just under $25.  It’s the principle.  I can understand that if you’ve already obtained the full version of your medical records, if you needed additional copies that there might be a charge.  But to obtain any part of your record for the first time?  It simply shouldn’t be allowed.  And if it’s going to be allowed, then these facilities need to follow their own rules and policies, which as far as I can tell, they aren’t.   

For the Michigan records, the form clearly states that I wanted to receive a call regarding the charges before the request was processed.  THAT NEVER HAPPENED.  The form also states that there will be no charge for record requests that are one (1) to 75 pages.  However, I was charged a “reproduction fee” and shipping, which cost more than the “reproduction fee”.  I think “reproduction fee” is a fancy way of saying, we’re going to get you, but by giving it a fancy name, we’re going to make it so that you can’t fight us on it. 

For the Mount Sinai records, I was charged over $10 for priority mail.  The records could have been mailed cheaper, I have no doubt about that.  But I had no choice in the matter.  They sent them how they sent them, and made sure the bill was on the top of the pile. 

I assume that the records – from a hospital in Michigan and a hospital in New York – both came from the same address in Atlanta because both hospitals use the same electronic medical record (EMR) program.  This protected health information is so protected that information from Michigan, New York, and who knows where else, ends up in Atlanta for printing, and costs me money to ship back to me.  Sounds really safe, doesn’t it?  My information is really protected when it lives in one place and is sent to another place just to copy and mail back. 

I don’t understand why these records are so valuable to the people that are charging me for them.  But they are valuable to me.  They are PRICELESS.  I need this information.  And to date, I have found no EMR system that is able to provide the level of information that the actual paper record provides.

Why should I have to pay for the record for services when I’ve already paid high costs physically and emotionally for the services that have been provided?  It’s adding insult to injury.  It’s telling me that someone is more deserving of my information than I am.    

And who’s benefiting from this?  Not me.  Not the patient.  Not the person who has to shell out money for the sake of continuity of care.  So I ask why?  Why are companies doing this?  There is no explanation other than making a profit.  Well guess what?  It’s criminal.  It’s profiting off of the pain and suffering of sick people.  And I’m literally and figuratively sick and tired of it.  I shouldn’t have to fight, or pay, to get access to my own information.  No one should.  There has to be a better way. 

I guess in reality, PHI really means protecting patients from themselves.  But I don’t want this information kept from me.  In order to be a fully engaged patient, I need to be able to access my medical record.  I fear that what actually occurs is not protection but highly unsafe and poses risks to everyone, and people will suffer even more by not having access to information, that as patients, we so desperately need.  Nothing about us, without us, right?

As far as I can tell, my information can be farmed out to companies across the country and they have an easier time getting their hands on my information than I do.  I should not be obtaining this information on an as needed, or need to know basis.  Having FREE and EASY access to my protected health information should be a right, not a privilege. 

Have you had this happen to you?  Please share your stories in the comments, and share this post with others. 

THIS NEEDS TO STOP, NOW!!!       

Will The Real Nurse Ratched Please Stand Up?

Here's to you, Nurse Ratched.  Bottoms up! 

Oh wait, she doesn’t have to.  I’ve met her already.  She’s real.  And she gives me nightmares.  That’s right.  My Nurse Ratched isn’t the stuff of fiction.  No, she’s a real live woman who trolls the halls of the bowel control program.  Yeah.  I don’t think you need any more information than that.

Every time she calls me, she suggests yet another remedy for my severe constipation.  Have we tried this?  Have we tried that?

This is the woman who, over the past several months, has had me do a bowel cleanse five separate times.

I feel like Bill Murray in “Groundhog Day.”  Every time my phone rings and it’s her, it’s the same thing over and over again. 

It’s worse than deja vu because there is no escaping it. 

And despite my frustration, I have been compliant, because I need help, and at the moment, she stands between me and a treatment that will hopefully work. 

Then, out of the blue, I get a letter saying that the office has tried to call me multiple times without success.  That’s interesting since I’d been wondering about them.  And I hadn’t received a single call.  Actually, I got two copies of the same letter on the same day.

The letter ends: “If we do not hear from you within the next t 30 days from the above date, we will assume that you no longer require our assistance.”

Guess what bitches?  You aren’t helping me anyway.

Really, you’re going to drop me as a patient when you’ve only contributed to making my problem worse?  That’s pretty funny, if you ask me.

She and the other nurses that I have communicated with have made my life miserable.  This one in particular has downright been a bully, basically telling me that I have to do exactly what she says...or else… 

My bowels move about as well as an eighty year old’s, at this point, and I’ve done everything they have suggested I try, and nothing has worked.

Her latest suggestion is Lactulose, whose main side effects are “Gas, bloating, burping, stomach numbing/pain, nausea, and cramps.”  I think she is single-handedly trying to kill me.

Lactulose is basically like what I would imagine drinking corn syrup straight up would taste like.  

And it gave me the worse gas pains of my life.  I was literally sitting on the toilet, my body convulsing, and going alternately from sweating to death to freezing, and all I could think was “somebody kill me now.”  I felt like a druggie jones-ing for a fix.  My body has never reacted to anything like that before. 

Way back in August, my doctor prescribed Amitiza.  This would hopefully be a one-pill-a-day solution to my chronic constipation.

But no!  Nurse Ratched told me over the phone that a pre-authorization is required, and that a denial would need to be appealed, and that takes too much of her time.  So rather than doing what my doctor prescribed, she’s had me try every constipation regimen under the sun, which has caused my body to basically flat line in the pooping department.

These days, if I go once a week on my own, that’s saying a lot…    

I think I’m more likely to shit gold at this point than excrement.  It would probably feel better, too.  And at least I’d be rich.

I don’t think this nurse understands that while this isn’t my biggest problem, though at the moment, it may actually be, it’s a quality of life issue.

I would honestly rather deal with arthritis pain than gut issues.  They can be totally debilitating. 

I’ve been told by pretty much every doctor I’ve ever seen for this problem that I am too young to be having the problem to the degree that I am.  But I’m supposedly too young for lupus and RA too, so that’s a mute point. 

 

I’m so over this nurse-on-a-power-trip thing.  You’re not a doctor, so stop acting like one.  And do what my doctor told me he thought was best, not what is easier for you.  Just because you’re too lazy to do the prior-authorization and then file an appeal when it’s declined, isn’t my problem.  But you’ve made it my problem.  And quite frankly, now I’m just royally pissed….And royally constipated.      

The next time I go to my doctor, I’m going to bring my Lactulose with me and ask my doctor to get Nurse Ratched.  Then I’m going to have her do a shot of Lactulose with me.  A small price to pay for my pain and suffering.  It’s the least she can do.  In solidarity, right? 

These Chronic Bitches Be Crazy (And The Healthy Ones Too)…*

There’s a rant I’ve been meaning to post for a long time.  It was in response to a completely awful comment that had been posted on a fellow blogger’s site.  But, for whatever reason, I never posted it.  So I’m going to go off on that rant, and then explain why it is particularly salient to me right now.

The comment was from a healthy person, which basically suggested that if the chronically ill person would just shut up and stop complaining, they would be cured.

We’ve all had our fair share of people who won’t believe everything we write, will offer snake oil cures, or will go as far as to say that our illnesses are created in our minds.  There are healthy people who will tell us to get over ourselves or offer advice when they really have no place in the conversation in the first place. 

But by virtue of blogging, we put it out there, and we run the risk of people reading it who just can’t possibly understand. 

You know, I’m the first to admit that I don’t always take stellar care of myself.  My diet isn’t always as balanced as it should be.  And there a host of other things.  But the bottom line is, the things that I could do better are not killing me. 

Self-blame is NOT the answer people.  I didn’t get lupus because I’m a bad person or because I did something to deserve it.  It happens.  Shit happens.  Things happen that we can’t explain or understand, but we have to deal with as best we can.  We have to go on living.

And these naysayers suggest that if we stopped being so self-absorbed, we’d be cured.  Yeah.  Uh huh.  Because so many of the chronically ill people I know love to wallow in self-pity.  NOT!

In my dreams, if I could be sick or healthy, of course I’d be healthy.  But if I was healthy, I’m not sure I’d be as compassionate and empathetic as I am (this post notwithstanding).

Seriously.  Go F*** Yourself.  

And when you get sick, and feel like shit physically and emotionally, don’t come crying to me. 

And when you get sick, it’s going to have nothing to do with being faint of character, right?  When it comes to you, it’s merely that the universe conspired against you.  Funny how that works.

I feel terrible for people like this because they are so ridiculously out of touch with reality.  They are the ones that have problems.  Not us.  One day they’ll be faced with something they never imagined, and they’ll shit their pants trying to figure out what to do about it. 

I have to believe these people weren’t born moronic.  They became it.  And then decided to pepper the world with their unwanted and unwarranted opinions.   

In fact, I think we chronically ill folk appreciate the hell out of life.  We don’t take the good days for granted.

And wow, what a wonderful life you live indeed when you have time to spew this crap. 

And I know, this is a bit the pot calling the kettle because I’m stooping to their level when I shouldn’t even engage.  But it’s hard not to.  And it’s not just for me.  It’s for all of my chronically ill blogger friends, because I know that none of us are immune to these kinds of people.

You know, a truly happy person wouldn’t take other people down.  Don’t they realize that their ignorance runs deep, and the things they say hurt and offend? 

However, I’ve discovered recently that there’s something worse than these idiots that read our blogs once and offer an opinion based on nothing more than their ignorant thoughts.  It’s mudslinging that comes from another chronically ill blogger.  In some ways, this is harder, I think, to take, than the crap that comes from the healthy, “well-meaning morons.” 

This is because they aren’t in our shoes and they can’t imagine being in our shoes and could never understand in less they were in our shoes.  And let’s be honest.  Most of us don’t wish illness on anyone. 

So when one chronically ill blogger rags on another one for seemingly no reason, it hurts a lot of us. 

And I’ll admit.  I’m a bit biased.  I really like ChronicBabe.  I’ve met Jenni in-person and she’s super cool. 

I’m not going to explicitly call the other person out here.  But I’ll link to Jenni’s response, and you can get the skinny on the situation (Are the qualities of a ChronicMom and of a ChronicBABE mutually exclusive?).  Or not.  It’s really not 100% important exactly what was said.  It’s what it intimated.  Basically the gist is that chronically ill moms are on a totally different level than chronically ill non-moms.

One thing that I find totally ridiculous about this comment is the fact that many women in our community want to have children and can’t, or struggle with trying to balance health and getting pregnant.  So what if ChronicBabe isn’t childless by choice?  And what if she is?  Basically this means that chronically ill women with children have it harder than chronically ill women without children.  This seems like faulty logic to me. 

As chronically ill women, we have shared experiences, regardless of illness type.  And it’s true that chronically ill moms may have unique challenges that women without children don’t have.  But I don’t think that chronically ill moms necessarily have it harder or worse than non-moms.  I think it’s a mistake to factionalize our community in this way.  It’s concerning to me.   

It’s one thing when there are rifts between chronically ill bloggers and the well-meaning, but ignorant, healthy people.  But it’s another for there to be rifts between one chronically ill blogger and another.

You know, I’m a student, and I think it would be easy to think that my life as a chronically ill person is more difficult than someone who is not a student.  But I can’t say that.  There is absolutely nothing based in reality that makes it so.

So why this need to compare suffering?  Why try and push the agenda that one person has it harder than the other?  I read a lot of blogs by people with chronic illnesses that have a wide range of conditions; diabetes, cystic fibrosis, cancer, colitis, and the list goes on and on.  I am sure there are some people who may feel that they have it harder.  Maybe they are terminal.  But whatever the case may be, more often than not, I find that what connects us is what we have in common rather than our differences. 

I’ve shared this story several times, but it’s something I’ll never forget, and seems appropriate once again.  I was getting steroid infusions and the girl next to me, who was maybe a few years older than me, was getting chemo.  I was new to the infusion room, so I didn’t know all the rules, and was trying to ask the nurse if it was okay for me to listen to my IPod.  The nurse didn’t hear me, but the girl next to me did.  And she said 10 words to me that I will always remember: “You do whatever you need to do to get through it.”  I looked at her, and thought, this girl has cancer, and she’s cheering me on.  But in that moment, in that infusion room, we were equals.  It didn’t matter what diseases we had or what was being pumped into us. 

And right around that same time, I started my blog.  And this is why I blog.  This is what keeps me writing.  It’s the experiences I shared with all of you, and you’ve shared with me.  It’s the encouragement that I receive, and hope that I offer to others.  It’s not the mudslinging.  It’s not the mean and negative comments by healthy people.  It’s everyone reading this right now, and those who have read my blog in the past, and those who will read my blog in the future.   

I know people won’t always agree with me, and that’s fine.  But I hope that the ties that bind us are stronger than the ones that don’t.   

When a healthy person attacks someone in our community, we spring into action.  We take the offending person to task, and we comfort the offended.  And I think the same rules apply when there is negative chronic-on-chronic action.  So I’m standing up for my friend, and hopefully for most chronic chicks out there when I say that we should celebrate our similarities, and acknowledge, but nicely, our differences.  A plurality of opinions in this community is important, as long as they remain respectful to others.  Words hurt.  But so does the absence of action.    

I guess the other thing is that as chronically ill people, we don’t have the market cornered on suffering.  A hurricane just pounded the East Coast.  Some people lost everything.  Illness isn’t the only bad thing that can happen in life.  I guess there is the old adage, “At least you have your health.”  But that’s really no consolation to those of us that don’t.  But the reality is, if we can’t relate to other chronically ill people, who can we relate to?          

* So I’d like to clarify, in case you had concerns, that this title is rather tongue-in-cheek.