Thursday, June 28, 2012

Small Earthquakes In Humira Land

Ugh.  I definitely dread every other Wednesday at around 5 p.m.

It’s Humira Time. (It’s like Hammer Time, but not…)

The dust has settled from the original earthquake that brought Humira into my life.  But there are still aftershocks, small tremors that threaten to knock me off my game. 

I am glad that I was told that I could inject into the outside side of my leg.  The burning does not seem to be as bad as it is on the top of the thigh.

And I am glad that we have decided to coincide date night with Humira injections.  It is a good incentive to get it done quickly so that I can spend some quality time with my man.  But I hope that are lives won’t always run on this schedule.  I hope that I won’t always fear having to travel and doing my injection away from home. 

I also hate the click!  So much anticipation occurs.  I’m okay once I’ve pushed the button.  But it’s actually pushing the button, and then not freaking out about what is coming next, that really gets me.  

In the grand scheme, a painful/uncomfortable injection every other week is not a big deal.

But we all have that thing that throws us over the edge, that we have a hard time coping with.  And it may not be the most painful or difficult thing that we have ever experienced.

It may be that it sets off something within us that festers until it becomes this huge, insurmountable thing.

I hate the way I feel in preparation for my injection.  My hands shake, my stomach hurts.  I hate that my boyfriend sees me in such a state, but I’m glad that he got to see how seasoned I was doing the Methotrexate injections. 

Because I was so good at doing them.  My boyfriend was over one Saturday morning, early-ish in our relationship, and I asked if he minded if I did my injection while he was there.  He and I had a conversation, and I went about the whole process in about two minutes.  It felt good.  I was confident.    

There have been more tears shed over the Humira experience than I think there has been about any other specific part of my illness journey (other than overall).

I am grateful to my boyfriend for being helpful and supportive in this regard.  He has sat by me while I’ve hemmed, hawed, cried over one botched injection and one injection that the couch received, for going to the hospital with me, both of us prepared for a fight with both my doctor’s office and my insurance (which ultimately went more smoothly than we both were hoping for).   

I’ve always had an irrational fear regarding spinal taps.  Thankfully, with all I have had to experience since I got sick, that has not been one of them. 

But a question I ask a lot is about where you draw the line. 

Because really, it’s the anticipation that’s the worst part.

I guess in my denial, I hoped that if we could get my disease well enough under control, I wouldn’t have a need for biologics.  I wouldn’t have to rely on drugs to keep me functioning. 

While I have definitely made strides, it has just been a far longer process than I expected.  The feelings that I would have expected to go away by now are still here front and center. 

I should be grateful.  When I was on oral MTX, I couldn’t do anything the day I took it.  With Humira, I can go out and enjoy date night.  It’s still messing with my sinuses, but it doesn’t seem as bad as it was at first. 

Maybe some of you can’t believe that I’m still talking about this.  But I am.  And I will until it no longer feels so huge.

I think that what has really hurt me emotionally is the second injection.  I went into it feeling pretty confident.  The first injection went fine.  It didn’t hurt at all, and was nothing like what so many people had written about.  And then, the second injection burned so bad that I pulled the pen away halfway through, letting half the dose run down my leg, before I was even conscious of what was happening.

So now I am in a rut.  A rut of If I don’t feel scared, if I get too confident again, I’ll mess things up.

This is totally irrational, I know.  But explain that to my brain, when every other Wednesday at 5:00, I pout, try to avoid hitting the button at all costs, and then once it’s done, wonder what all the fuss was about. 

It doesn’t feel good, but I wouldn’t say it’s super painful.  It’s uncomfortable.  At least the burn hasn’t felt like it did that second time, when it literally felt like someone was searing my flesh. 

It sets off this chain of thoughts that I verbalize: I can’t do this.  I don’t want to do this.  This is stupid.  This is ridiculous.  I don’t want to do this anymore.  I’m making this bigger than it is. 

I realize that the original Humira “earthquake” wasn’t caused by me.  I didn’t know what to expect, and so it is natural to feel nervous and unsure.  But the tremors, the aftershocks, are all on me.  I’ve created them by letting my fear and anxiety take over, and I have to go to a place where that doesn’t happen.  A place where I can push the button and be done.  A place where there isn’t a big production or a natural disaster, for that matter, over the process.  I’ve created the storms.  And now I have to find a way to banish them. 

Wednesday, June 20, 2012

The Accidental Health Activist/Advocate

I recently read “Dream New Dreams,” a book by Jai Pausch, who was married to Carnegie Mellon Professor Randy Pausch of “The Last Lecture” fame.  In it, she describes her role as a caregiver, and h0w she never imagined that one day, she would be an activist for pancreatic cancer and an advocate for fellow caregivers, who are often overlooked in the medical system. 

This got me to thinking about my own journey as a health activist and advocate. 

If you would have told me five years ago, that I would be writing a blog, much less a blog about chronic illness, I would have thought you were going bananas.  I didn’t even know what a blog was until I started scouring the Internet, trying to learn more about chronic illness, in general, and lupus and rheumatoid arthritis, in particular.

I’ve always loved to write, but when I started my blog, I never imagined that, not only would it turn into a lifeline between me and other chronically ill people, but it provided me with a captive audience to share my triumphs and tragedies with.

I have always written my blog in an honest and open way, sharing the best and worst experiences I have had as a patient.   

I also have to give a nod to Robin Roberts and her recent announcement on “Good Morning America” that she has been diagnosed with MDS.  I think that for chronically ill people, this is one of our worst nightmares.  That treatment for our primary illnesses could cause permanent damage to our bodies, or worse, new illnesses. 

It was amazing to watch her announcement on air, how she described a pic line.  I think she is another good example of a health activist, who, if you would have asked six years ago, would never have imagined she would be in the position that she is today.  A woman who had cancer, who is now battling the aftereffects of cancer treatment.

I’m pretty sure if she had her way, none of these things would have ever happened to her.  But they have.  And now she is living her life in a new and different way. 

There are many others I can think of that fit this situation.  Bob and Lee Woodruff, becoming activists for traumatic brain injury.  I am sure there are others you can think of, as well.  People who have stood up for causes that they never thought would be their own.

Just as flowers can grow in the most unlikely of places, on the most seemingly infertile ground, places where war, death, and destruction have occurred, activism and advocacy can come from the most unlikely of people, out of situations we never saw coming and weren’t prepared for.  

At least, this is how I view myself getting on the road of advocacy and activism.  

It’s not a road I had previously traveled, not a road I had ever expected to travel on.  But we’ve got to make the best of what life throws at us.  It isn’t always easy or fair, but it’s what we’ve got. 

I’m writing this post because my health issues have had a significant impact on what I want to do in the future, the person I want to be.  And because I envision myself finishing graduate school next spring/summer, I am definitely thinking about the future.

Some people believe in callings – according to Merriam Webster, “a strong inner impulse toward a particular course of action especially when accompanied by conviction of divine influence” (   

I do feel, in many ways, that my illnesses, and the circumstances surrounding them, have called me to action.  While I can’t reveal exactly what this means for me yet, and it probably means things I haven’t even conceived of, I am filled with hope because I have a clear direction for the future.  It might not seem clear and direct to every one who views my situation, but ultimately, I know myself the best.

And a lot of this comes from the fact that as chronically ill people, we are usually the least able (because of time, energy, etc.) to advocate for ourselves.  And yet, we all know that if we don’t advocate for ourselves, no one else will. 

It is at this intersection of can’t and must that I often find myself. 

I think the bottom line is whether you are a caregiver, or a chronically ill person, yourself, activism and advocacy are not easy.  They take work.  They take perseverance.  They take heart.  And they take the belief, that deep down, what you are doing in right, good, and necessary. 
(And I apologize.  This has been one of my longest non-blogging spells that I have had in a long time.  I’ve been busy teaching a spring class, which just ended, meeting my boyfriend’s dad and*his dad's* girlfriend, and other non-health related matters). 

Friday, June 1, 2012

Getting Over The Humira Hump (With Lots Of Help)

Hopefully it will be smooth sailing from here on in.  A girl can dream, right?

I’d be lying if I said that being on Humira is easy.  Because it’s not.  But it’s necessary if I want to be functional.  At least that’s what I’m telling myself, to convince the irrational side of my brain that I can and should be injecting myself.

On Tuesday, my boyfriend asked me if “we” were injecting tomorrow.  This should have steeled my nerves, knowing that I am not alone in this.

But when Wednesday rolled around, I was no longer feeling confident.

I hemmed and hawed for over an hour, only to have the thing go off by itself on the couch.  Then I cried.  Part of me thought we should be laughing because we injected the couch.  Not literally.  Unintentionally.  But we did. 

(Don’t our mothers always tell us not to cry over spilled milk?  Does the same adage apply to spilled Humira?)

But the other part 0f me, the part of me that was totally emotionally fried did not find this funny at all.  All that time.  $750 down the drain just like that.

It put the score at me, 2, Humira, 2.

I wasn’t sure if my insurance would be willing to cover a replacement.  It costs $1,700 a month for two doses.  Would they be willing to shell that out again, because of my mistake? I hoped so because I couldn’t quite imagine what the next two weeks would have been like without it.

Just hope that we never have an issue like this, again.  That the fridge doesn’t freeze or break.  That the couch doesn’t get medicated again.  Because I’m not sure my insurance company will be so kind in the future.

Anyway, my boyfriend went to the hospital with me.  I’ve always said that the person who does that is definitely a keeper.  Even when I was dating a doctor, there was always an excuse for why he wouldn’t go to appointments with me.  But this guy, he signed on, especially considering I figured we could end up at the hospital anywhere from an hour to three or four. 

So I go to the pharmacy.  They told me to call my insurance company and come back, because if the pharmacy went to put it through, my insurance would reject it.  So I called my insurance company, and they told me to go back to the pharmacy.  I was totally ready to fight.  But the pharmacy told me that my call did the trick, and the prescription went right through.  Let’s just hope that the next time I need to get it filled, they don’t reject me.

Then I dragged my boyfriend up to the rheumatology clinic, to find a nurse who could give me the shot.  At first, the clinic staff seemed like they weren’t going to let me see a nurse.  Um, really?  A physician in your clinic prescribed this medication.  Again, I was ready for a fight.  But they got a nurse, who spent a lot of time with us.  She assumed that it was my first injection.  And she was surprised that I hadn’t had any training in the office, and that I had requested the Humira Starter Kit myself, directly from Abbott, rather than being given it in the clinic.

She was awesome.  Although she refused to give me the injection.  She said I had to do it myself.  So I did.  She showed me other places on my leg where I can inject, and how to do it so that I don’t actually have to pinch the skin.

I think that all of this could have been avoided if a nurse would have sat down with me to begin with.  But they didn’t.  I ordered the started kit from Abbott myself.  The first injection, which went the best so far, was all on me.  I think when we told the nurse this, she was a bit taken aback. 

It’s not that I’m incapable of injecting myself.  It’s that I lost a lot of confidence and got a lot more nervous after sort of messing up the second injection.  It’s made me gun shy. 
I don’t want it to be that I worry and obsess for all of the days in between doses.  That’s no way to live.

I have to be able to tell myself that 10 seconds of pain is worth two weeks of feeling pretty good.  The rational side of me totally gets that.  But the irrational side tells me that this is the worst pain that I’ve ever felt, that injecting myself is unnatural and that I shouldn’t do it, etc.  You get the point.  The irrational side totally wants to talk me out of it, while the rational side can push the button and be done with the whole thing quickly.

Baby steps.  I have to set manageable goals for myself.  And I have to celebrate when things go well.  These days, that’s no small feat.  If I’m not crying at the end, well, that’s a plus, too. 

I’m learning that it’s okay not to be okay.  It’s okay to be sad, or scared, or frustrated, as long as it doesn’t get in the way of trying to be healthy.  It’s okay to cry.  It’s okay to want my boyfriend to be there for hand-holding and moral support.  It’s okay to ask for help.

I see now that the hemming and hawing is the problem because it adds more variables into the mix.  If I can get in and get out, there’s less of a chance of things getting messed up or the pen accidentally going off when we’re not ready for it to. 

This journey has been a rollercoaster.  But it’s nice to know that, even at the level of hospital pharmacies, insurance companies, and rheumatology clinics, that there are people who are willing to help, and who are willing to recognize that being chronically ill is hard.  It takes a toll, both physically and emotionally.

And it’s nice to know that I’m not alone on this journey, that there is someone willing to stand by my side, willing to fight for me, willing to console me and dry my tears, and willing to spend several hours in the hospital with me, when he doesn’t like hospitals or could have easily been doing something else.  It’s something that I’ve wanted, but have never really had before.