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.    

Wednesday, August 24, 2016

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.   

Wednesday, August 3, 2016

Self Care = Must Care

I have never been the poster child for self-care.  I say “yes” to too many things, I don’t say “no” often enough, and I must confess, I haven’t been to a rheumatologist since before I moved back to Michigan from New York.  It’s probably been at least eight months. 

I had to be on call for work for the first time.  It was hell.  Starting on a Monday, I was on call from 5:00 p.m. to 12:00 a.m., then on again from 5:00 a.m. to 8:30 a.m. during the week, just in time to go to work, and the cycle repeated itself.  On the weekend, I was on from 5:00 a.m. to 12:00 a.m.  This was for an entire week.  And by the end, I was flaring for the first time in years. 

For at least two weeks after, I was on a downward spiral. 

Then…I went to Miami for a Pharma event…

Physically and emotionally, I was really in no condition to go.  But I didn’t feel like it was appropriate to let the organizers know on Thursday that I wouldn’t be able to attend something that began on Friday.  Next time, I will trust my intuition, and cancel, even at the last minute if I have to.

There were a lot of issues, and I didn’t stand up for my needs:

1)      I had a very early flight out on Friday morning – meaning that I had to get up at 4:00 a.m. to get to the airport. 
2)     I was basically only supposed to be in Miami for 36 hours and was supposed to fly back to Michigan on Saturday.
3)     The heat and humidity in Miami was terrible.  If I wasn’t flaring before the trip – which I definitely was – I was definitely flaring after. 

But wait, there’s more…

The gate for my return flight was changed four times.  I ran through the airport, which is comical because I cannot run.  And literally could not breathe after the first gate change.  My flight was delayed for three hours and was ultimately canceled.  I spent the night in the Miami airport.  I didn’t sleep.  I spent six hours standing and waiting in line to attempt to talk to someone from customer service at American Airlines.

I rebooked my flight over the phone, but the options were less than ideal:

1)      Wait a full 24 hours and fly out on the same flight I was scheduled for originally, but the next night – No way was I taking a chance of getting stuck in the Miami airport for another night.
2)     Leave Miami at 7:00 a.m. Sunday, take a plane to Charlotte than a flight to JFK and then arrive in Detroit at around 4:00 p.m. – I not very calmly explained to the person on the phone that I have lupus and RA and there was absolutely no way that I could navigate multiple airports in the condition I was in, and that was before standing in line for six hours.
3)     Leave Miami at 8:00 a.m., fly to Philadelphia with an hour to make the connecting flight, and arrive in Detroit around 1:00 p.m. – I ended up booking this flight, but realized that there was a high likelihood I would miss my connecting flight

Ultimately, I ended up booking a flight Sunday morning on Delta.  I had to wait until security opened and then had to walk all the way to another terminal.  I was planning on asking for some sort of transportation when I got up to the customer service desk for American Airlines, but that never happened.  I had to make the choice, being five people from the front of the line, of waiting in line and taking the risk of missing my Delta flight, or getting out of line to make the trek to the other terminal without ever having talked to anyone from American Airlines. 

That Monday, I didn’t go to work.  I could barely walk. 

I swear, I recovered just in time to take a work trip to Boston. 

I’m starting to understand that taking care of myself isn’t always going to be the popular choice or make other people happy.  Some people might even feel inconvenienced or disappointed.  But if I’m going to be successful at anything in my life, I need to take care of myself, first and foremost. 

I’m learning that doing me is more important.  This is hard for me because I feel like I have totally fallen off of the blogging and advocacy bandwagon.  But after putting my body through so much, I’ve had to try and take it easy as much as possible.  It’s hard for me to slow down, but my body has forced me to do so. 

Hopefully if there’s anything I take away from these experiences, it’s to know my limits beforehand and avoid situations like this altogether, if at all possible.  I know that taking the earliest flight out and latest flight back makes no sense for me.  I know that having a turnaround time of less than a day doesn’t work.  I know what I can handle.  I know what is realistic, and in the last several months, I have put myself in completely unrealistic situations.  I have set myself up to fail.  I have to care about myself more and love myself enough to have the confidence in making decisions that are right for me.  Because if I don’t look out for myself, no one else will look out for me.       

Antidote Clinical Trial Search Widget

I wanted to make you all aware of a really cool widget called the Antidote Clinical Trial Search widget.  Because of the size of the widget, I was not able to include it in the sidebar, so I have included it as its own tab below the header of my blog.  

I know that often times patients are interested in getting involved in clinical trials, but have absolutely no idea how to find them.  This widget allows you to search for clinical trials in your area by searching your condition, entering your zip code, distance from you, your age and sex.  You can do all of that within the widget.  It will not navigate away from my blog until it shows you a list of results, which you can explore to see if you qualify.   

If you are interested in participating in clinical trials, I highly recommend using this as a resource.