Tuesday, July 31, 2012

Adding Insult To Injury: What It Means To Be Visible

Well, in some ways it’s adding injury to injury.  Just a few weeks after displacing my knee cap and needing physical therapy, I rolled my ankle in such a way that I sprained my foot.  So I am on crutches and in a boot for about the next two and a half weeks.  And of course, it couldn’t be the ankle of the same leg that was already injured.

But that’s actually not totally the point of this post.  This post gets at something deeper.

I’ve become visible.  For once, I am noticeably injured/in pain.  I’m usually pretty good at hiding my pain from the outside world, but this is not something so easily concealed. 

It turns out that the world is a surprisingly nice place; people hold doors, give up seats, ask if there’s anything they can do for you.

I was even told that I could take advantage of University’s para-transit to get me around campus since I don’t have a car.

For all the days that I’ve dragged myself around, often feeling nauseous, dizzy, my entire body in pain, sometimes feeling at death’s door, only those who really knew me made any effort to help or showed care or concern.

And yet, when I’m on crutches and in a boot for something that is by any standard less severe than my chronic illnesses and much more acute (as it will hopefully be all healed in a few weeks), the reaction of others, total strangers, in fact, has been non-stop. 

I see the pitied looks I get while hobbling around.  I watch as some people avert their eyes and look away. 

Look anywhere but the gimpy girl. 

This shouldn’t surprise me.  I know firsthand what it’s like to live with an invisible illness/disability.  But the point was hammered home to me due to this latest turn of events.

I am insulted by my body’s fallibility these days. 

But I’m also insulted by the fact that a minor injury – although I am fairly out of commission right now – gets so much more air time than something that could potentially kill me.

So on one level, I get it.  I guess what others can’t see, can’t hurt them.  So for the outside world, my chronic illnesses are a non-issue because they don’t exist to others.  But on another level, I don’t get it because my chronic illnesses exist to me in a very real, profound, and life-changing way. 

I would venture to say that, at times, I have been less able than I am now, even in a boot and on crutches, just in a different way.  When every step hurts because you have lupus and rheumatoid arthritis, and just lifting your head off the pillow and getting out of bed expends all of your energy for the day, hobbling along doesn’t seem so bad.

It’s all relative.  I’ve never been on crutches or in a boot before.  Crutches are truly a pain in the butt (and arms and my other leg).  They are exhausting.  And I hate being cooped up – no kickboxing or volunteering for this girl – and trying to heel up before my two big trips, so I won’t have to worry about having to deal with airport security in this regard. 

But honestly, I think I’d rather deal with this for a little while than deal with lupus and rheumatoid arthritis all the time.  This will pass.

For me, something that is temporary is in the spotlight for others.  And for me, what is not temporary, is barely paid attention to by others.  It’s sad.  Sad that we live in a world where only the immediately apparent is paid attention to. 

When I went to the doctor for my foot, the doctor I saw asked me if I was on any medications.  After every one, he would ask, “anything else?”  And resignedly, I would say “yes.”  As I went on with the litany, he asked what I was taking the meds for.  I told him because I have lupus and rheumatoid arthritis.  He asked if arthritis ran in my family and I said “no.”  His response was, “Oh, so you just got lucky?”

Well, I wouldn’t exactly call it luck.  And unfortunately, I do think that this injury is made worse by my arthritis.  For one, my left hip, which is the “good” one, started hurting yesterday, probably because I am using it so much right now.   And I have joint and muscle fatigue from using the crutches that I wouldn’t have if it weren’t for my chronic illnesses. 

I also think that I tend to push my body a bit too hard, and let both the (left) knee and (right) foot injuries go because I’m so used to being in pain and figured they would resolve on their own.     

And they’re the main reason that I’ve been prescribed three weeks on crutches and in the boot, because the doctor thinks it will take me longer to heal with all my other issues. 

And I guess, really, this is the crux of it.  The crutches and the boot are a symptom of a bigger problem for me.  In a way, they are just a visible, outward manifestation of my bigger health problems.  For most, this acute period will end and they will be able to go back to their “normal” lives.  For me, when this acute period ends, I will still have plenty to worry about. 

In some ways, invisibility can be a blessing.  You don’t have to explain yourself all the time and don’t have to deal with people’s uninformed reactions.  On the other hand, though, I think invisibility is really a curse.  I feel like you have to do way more explaining, and even then, people won’t always believe you or are able to understand.  If you’re having a down day, most people won’t know why.       

With visibility comes recognition, although not necessarily understanding.  But just as visibility can bring positive attention, it can also bring negative attention.  You can’t hide, even if you want to, because you stick out like a sore thumb.  

I find that rather than wanting to hide, I want to shout it from the rooftops.  I’ve said several times recently that I wonder if I should tattoo lupus and rheumatoid arthritis on my forehead so I wouldn’t have so much verbal explaining to do.  Because I get very sick and tired of having to explain, even to medical professionals. 

But who knows?  I might miss the crutches and boot for the recognition that they bring, if nothing else.  

Tuesday, July 24, 2012

Lupus? I Don’t Need No Stinkin’ Lupus! (But I Do Need A Small Favor)

(Please read this post to the end…)

Try as I might to ignore it, lupus seems to have another plan for me at the moment. 

I am having photosensitivity that is ridiculous.

I wanted to post a photo, but it’s kind of hard to see the red, blotchiness of my skin on my phone camera.

This is in part due to the fact that I hate sunscreen.  This is bad enough as a fair-skinned, redhead, but even worse for someone who has lupus.

I haven’t found a sunscreen that I like, and I suspect that I may be partially allergic to something in it.  If you have any recommendations in this regard, please let me know.  I think I have tried every drugstore brand that exists…

Then there is the fatigue, with a capital “F”.

I think part of the fatigue has been from basically having to start Humira all over again, but part of it is definitely lupus.

My rheumatologist has always said that fatigue is the hardest symptom to treat.  And when it’s the type of fatigue that caffeine doesn’t touch, and it doesn’t matter how much sleep you get, you are still tired, fatigue is definitely an insidious symptom. 

I guess this shouldn’t surprise me, because when I first got sick, even when my pain was down considerably thanks to steroids, I was still tired all the time.  It’s one of the first symptoms to come, and one of the last to go.

I have also had significant pain near my bottom right rib.  That’s the telltale sign for me that I’m flaring.

Granted, so far it hasn’t been a massive flare where I can’t get out of bed.  But it’s just enough to remind me that while the Humira is working on my arthritis, lupus is taking advantage of the opening.

And part of it may actually be from the Humira, as one of the side effects is a “lupus-like syndrome.”

This is something that has flummoxed me since my rheumatologist prescribed Humira for me.  I already have lupus.  Why would I want a “lupus-like syndrome” to go along with it?

And given the extreme heat and humidity we have been having, I feel lucky that I am not having a worse flare. 

Anyway, this laundry list is my way of confirming for myself that lupus is alive and well in my life.

I have a lot going on in the next month, traveling several places – Martha’s Vineyard by way of New York with my boyfriend and his family, Los Angeles to be in my friend’s wedding, and several trips to my parents’ to secure my bridesmaid’s dress.

I just hope that with all that I have going on, I will be able to keep this flare at bay.

I’ve got enough going on.  I don’t need no stinkin’ lupus.

But I do need a small favor.  If you would, could you please follow the link below and vote for me to receive a scholarship Mayo Clinic’s Social Media Summit?  I greatly appreciate your support in this:

Monday, July 16, 2012

Humira Pen Is Out; Humira Pre-Filled Syringe Is In

 That’s right folks.

After another botched Humira injection, I have decided to throw in the towel on using the pen. 

But since I feel like Humira is working well to control my RA, I e-mailed my rheumatologist to see if he could prescribe the pre-filled syringe instead.

Clearly, the information on the Internet regarding the pen is mixed.  Some people can’t stand the pain the pen causes.  If you’re like me, it’s the click that the pen makes that is so anxiety provoking.

And I think this is part of the problem.  After reading a lot on the Internet before deciding whether to go on Humira, it really freaked me out.  People were saying how awful the pen was, and it made me really scared. 

I think sometimes the Internet can be our worst enemy.  While having so much information at our fingertips is great, giving us the ability to hear from others that we might not otherwise, sometimes it can be TOO MUCH INFORMATION.

And I don’t want this post to contribute to anyone’s fear who might be reading this.  This is my experience ONLY.  It doesn’t mean your experience will be the same.  I just got very used to injecting using a regular syringe when I was on Methotrexate, and that’s clearly what I’m most comfortable with.

Like I’ve said before, in the grand scheme of things, this should not have been such a trying experience.  There certainly are worse things that I’ve experienced since I got sick.  However, the Humira pen experience has caused more tears and more anxiety than anything else in recent memory.

I didn’t want to wuss out, but at some point, when I’m four for seven (barely), I decided that I couldn’t do it anymore.  It’s just not working for me.

And the thing that really told me this is sort of messed up.  Even though the injection was botched, I was so relieved.  Despite missing a dose, I felt loads lighter that it was over.  And that shouldn’t be.

I understand those who say we should be willing to endure a certain amount of pain in order to gain ground on our health.  And while I agree with that – I was willing to deal with the pain of the Humira injection – I would have jumped at the opportunity to get a lobotomy over continuing to traumatize myself with these injections.  And that also shouldn’t be. 

I’ve been less anxious for a colonoscopy than I have been for my Humira injections, although I wasn’t actually giving myself the colonoscopy, so…
There’s a difference between someone else injecting you, and you injecting yourself.  This is why injections are typically given in a doctor’s office.  If I wanted to do this, I would have gone to medical school.

While it’s common knowledge that I have never wanted to inject myself, I moved past that fear.  And while I wanted to not be one of those people who had to go off of the pen because I couldn’t tolerate it, the pen has been a huge stumbling block for me. 

And injection after injection, it hasn’t gotten any easier.  In fact, my anxiety has only increased.  When I start having breakthrough pain a few days before, I am reminded of the impending event.  And then the day of, I am a ball of nerves.

The other thing I didn’t like was that the pen never felt the same way twice.  The Humira instructions are very adamant about rotating sites, so that may have been part of it.  Also, doing it every other week, as opposed to once a week with Methotrexate, I think it is harder to get used to. 

But this journey has been further complicated.  While my rheumatologist was very willing to make the switch, it was by no means instantaneous.  I e-mailed him Wednesday evening and he e-mailed me back quickly.  Then I called the pharmacy at the hospital on Thursday to make sure the prescription was ready before I made the trip, and the only thing they had received was a prescription for the pen.  I called my doctor’s office, and spent 15 minutes on the phone talking to a nurse. 

The staff at my rheumatologist’s office is very hit or miss.  Some people are great.  You talk to them and whatever you need gets taken care of right away.  Some people aren’t.  You have to call multiple times, tell them the same story over and over again, and still don’t always get results. 

This was my experience this time. 

I was passing by the hospital on Friday, so I went in at just before 2 p.m. to see if the prescription was ready.  They told me that nothing else had been submitted, since the incorrect prescription the day before.  So I went up to my doctor’s office to try and get things straightened out. 

As I was getting off the elevator to leave the hospital, the nurse who I had spoken to on Wednesday, who was supposed to call me back that day and didn’t, called me.  She asked if I had gotten my prescription.  I told her that no, I was at the hospital, but hadn’t been able to get it.

She told me to stay put and that she would call me back.  She never did.  I finally went back to the pharmacy.  One person tried to tell me that the pen is the only method of delivery for Humira.  I tried to calmly explain that the pen and syringe are different.  Then they told me the insurance rejected the prescription because it was too soon to fill.  I explained the situation, told them I wasn’t able to get my last dose, and that if they approved the syringes, this problem would never happen again.

I feel bad that the pharmacy had to fight with my insurance company, but honestly, better them than me.  I also feel that my rheumatologist’s office could have done a much better job of helping to me to secure the medication.  It doesn’t bode well for them if I’m off my meds.    
But at this point, that’s neither here nor there.    

I spent over four hours at the hospital.  The pharmacy closed at 6.  At 6, I was still standing there, waiting, and not knowing what was going to happen.  I didn’t know what I was going to do if they would have sent me home empty handed.  I might have refused to leave.  I’m pretty sure I would have blown a gasket. 

By this point, my nerves were so frayed that I couldn’t even think about doing the injection.

So I waited until Saturday, and I couldn’t do it.  I was just totally paralyzed by fear.  And I was totally freaking out.  Normally, my Humira shot is on Wednesday, so I was already four days behind, and starting not to feel good.

My parents and sister drove over an hour so that my mom could come and give me my injection.  I have to apologize to them and my boyfriend for causing them so much stress.  My anxiety just totally ran away from me, and I could not get it in check.  But I am a lucky girl to have such wonderful people in my life.

I want to emphasize, again, that this is only my experience and not indicative of others’.  However, if you are having problems using the pen, I would definitely talk to your doctor to see about switching to the pre-filled syringes.  I only wish that I would have been a better advocate for myself, and had tried to get the change completed sooner than I did.  I know myself well enough to know that things weren’t getting easier for me.

As I suggested in the post I submitted for the latest edition of Patients for a Moment, Humira has been my Achilles’ heel.  And I’m not ashamed to admit that.  In fact, I think we all have something that we just can’t handle when it comes to the chronic illness experience. 

Like my mom said, I’m not Hercules.  And she’s right.  We can’t all do everything, and that’s okay.  It’s frustrating to me that the Humira pen was so traumatic that I digressed in terms of being okay with needles, and being okay with injecting myself.  I was one hot mess on Saturday.  Rather than beat myself up, though, I am going to try and move forward, and hope that these injections get easier as time goes by.  I hope that because the syringe is more failsafe than the pen, I will get my confidence back, and this will no longer be the hellish ordeal that it has been for the last few months.    

Sunday, July 15, 2012

Patients For A Moment: Achilles Heel Edition

For the July 2012 edition of PFAM, I asked readers:

What’s your Achilles heel when it comes to illness?

We all have that one thing that pushes us over the edge, as far as chronic illness is concerned.

What is the one thing, no matter how seemingly minor or severe, that really gets to you?  And what do you do about it? 

This topic obviously struck a cord with health bloggers. 

I’ll start things off.  In my post, “Small Earthquakes In Humira Land”, I talk about how Humira and the drama that comes with it have, for me, become my Achilles Heel.  Check out this post and others at my blog, Getting Closer To Myself

Kathy, from FibroDAZE, suggests she, herself, is her Achilles Heel, in the post “My Achilles Heel?  Myself!”.  Kathy’s enviable to-do-list in the post shows what can happen if we overdue it.  We’ve all been there, right?

While in the post, “Stress, AI Disease, and Me: A Work in Progress”, Elisa, of Sjogren’s Style, doesn’t explicitly call stress her Achilles Heel, she tells us that even though she knows stress impacts her illnesses, it is an ingrained part of her identity.

In a post titled “My Achilles’ Heel”, Iris Carden of Sometimes, it is Lupus, talks about running into trouble when she has a few good days and forgets she’s sick.  I can completely sympathize with this.  Don’t we all use the veil of wellness to overdue things?

Elisabeth Greenwood, of Redefining “Good”, talks about the two things that she considers to be her Achilles Heel – hair and sleep.  Read about them in the post, “Patients For A Moment: Achilles Heel”.

Here’s Your Gold Watch – Rheutired’s Annette McKinnon’s talks fittingly (?) about her feet being her Achilles Heel, in the post, “Not the Feet of My Dreams”.

That’s all for this edition. 

The next edition will be August 15, 2012, and will be hosted by Duncan Cross (official announcement to follow on his site). 

Friday, July 6, 2012

Patients For A Moment Is Here July 15, 2012

I’ll be hosting “Patients For A Moment” on July 15th, 2012.

The theme for this edition is:

What’s your Achilles heel when it comes to illness?

We all have that one thing that pushes us over the edge, as far as chronic illness is concerned.

What is the one thing, no matter how seemingly minor or severe, that really gets to you?  And what do you do about it? 

For me, it’s Humira.

If you would like to submit a post, e-mail the following to

Your name (as it should appear)
Your blog’s name
Your post’s title
Your post’s URL

And make sure you put “PFAM” in the subject line of the e-mail.

All submissions wishing to be considered should be received by 11:59 p.m. Friday,  July 13th, 2012.

Monday, July 2, 2012

When Good Knees Go Bad

As luck would have it, at a time when it seems that Humira is controlling my arthritis pretty well, I go and injure my left knee in kickboxing.

About a month ago, I remember my knee hurting more than usual after kickboxing.  While I have never really had significant arthritis problems in my knees, I told myself to wait and see if things improved after my Humira injection.

Things didn’t improve, but since I am so used to being in pain, I walked around with my knee slightly swollen, killing me walking up and down the stairs and while bending down.

I quickly realized that the pain I was having was very different from arthritis pain.  And that the pain was from an acute injury. 

I talked to my kickboxing instructor, and he suggested that I give things another week, but that if they didn’t improve, I should go to the doctor.

So that’s what I did.  And now I am going to physical therapy.  They think that there is a combination of things going on, but definitely an acute injury occurred.  The most likely cause is a misaligned kneecap, which has caused inflammation of the joint. 

In some ways, I guess there’s something to be said for being “athletic” enough to actually injure oneself by exercising.

On the other hand, there is a lot of frustration on my part that the situation is happening at all. 

So where does chronic illness fit in with this?  Well, it’s front and center, as you might imagine.

According to my physical therapist, the injury is being exacerbated by some bad habits I’ve picked up walking with arthritis. 

I think we unknowingly make a lot of accommodations in an attempt to reduce pain and increase mobility, but these changes can cause other problems, sometimes to previously unaffected areas.    

I am hoping that my knee gets back into shape, and that I will be able to continue kickboxing. 

For now, the prescription is icing my knee three times a day, wearing some support tape, and going to physical therapy once a week.

I suppose that things could be far worse than this, but it feels a bit like adding insult to injury, when you have an acute problem on top of being chronically ill. 

Like wasn’t one thing enough?

And I’m pretty sure that given my health issues, it will probably take longer for this to heal than it would for some people who don’t take as long to bounce back from things. 

As Independence Day approaches, it makes me think about personal independence and what we lose from illness.  I’m lucky in that I can do almost all things myself that I should be able to do.  However, given this injury, it’s not hard to see the slide that can occur. 

It’s also a hard lesson to learn that I should listen to my body, rather than attributing everything to the same old, same old.  Hopefully I didn’t cause myself further injury by ignoring it for several weeks. 

Hopefully this knee issue is a minor setback.

Lesson learned.