When Health Is The Focus Again

It’s been a while. Mainly because my health hasn’t been the center of everything. It’s so easy to write when things aren’t going well. It’s harder to write when they are.

In the last two years, I bought a house and got married. And of course, lupus and rheumatoid arthritis have been there and figured in. We bought a ranch because I didn’t want to be forced to navigate stairs if my health declines. A lot of what went in to planning our wedding was done with chronic illness in mind. But even so, those events were at the center.

Now, due to circumstances beyond my control, my health is front and center again. Several months ago, I found out that Quinacrine was no longer available – more about that in another post. As a result of this, my rheumatologist suggested that I go back on Plaquenil. I had been on it before, with my previous rheumatologist, with little success. I told my current doctor that, and he wasn’t convinced. Even when I told him that I had been taken off of it due to elevated liver enzymes, he told me that was incredibly rare with Plaquenil.

So I played the game. I started taking Plaquenil again, just to prove a point. And prove a point, I did. Pretty much every side effect that comes with Plaquenil, I had. I had headaches, extreme nausea, and severe itching. I switched to taking the medication at night instead of the morning and that helped with the headaches and nausea, but I continued to have extreme itching all over my body.    

When I told my doctor my symptoms, he told me that I must have an intolerance to Plaquenil and that I should stop taking it. He didn’t offer any other options. Well, other than telling me that I could make a killing if I could find a way to manufacture Quinacrine myself.

And with this situation, I feel like nothing has changed in the 12 years that I have been sick. Because of my “overlap syndrome” of lupus and RA, many treatments aren’t an option for me. Methotrexate didn’t work and caused elevated liver enzymes and low white blood cell count. Cellcept and Tacrolimus were no good either, for various reasons. Humira caused me to go into the worst lupus flare I’ve ever experienced and so that means that typical biologics for RA are basically off the table for me.

So for now, I’m on Imuran and that’s basically it, at least until I want to get pregnant. And then the jury is out because my rheumatologist and gynecologist disagree on whether I can remain on Imuran during pregnancy. More than likely, I’ll have to give it up, too.

And then where will I be? The ultimate test. How will I be on nothing at all? Will I be able to function?

It’s beyond frustrating.

And right now, I don’t feel great. My labs don’t look great. It all feels like a crapshoot. There are no clear answers or easy decisions. There’s just better or worse.

My old rheumatologist used to measure progress based on whether I was having more good days than bad days. For most of the time I saw him, I was having more bad days than good. But things got better. And I’ve maintained that. Going off of Quinacrine and back on Plaquenil changed things. Suddenly, I was having more bad days than good.

So for now, I wait. Wait for solutions and treatments that don’t exist, wait until the answers become clear to me.

The Art Of Self-Injection

Saturday was shot day.  And I did it myself!

Over the past few weeks, I spent a lot of time online researching potential tools that would facilitate the injection process. 

As I puttered around, I was a bit frustrated to discover that Enbrel and Humira come in pre-loaded pens. 

Methotrexate is totally old school.  You get vial of medication.  I have to prep the syringe myself.  MTX is a DMARD, whereas the other two are biologics, so I’m not sure if that makes a difference.  Or if it’s just the fact that good old MTX is stuck in the old days.

Enbrel and Humira also come with very thorough instructions, and their websites also say several times that your doctor’s office should make sure you have self-injection down before you leave the office with a prescription.  My rheum’s office gave me a very brief crash course, in which my hand shook the whole time at having a needle and syringe in my hand for the first time ever.  How could I get self-injection down when I was so busy paying attention on how to prep the syringe and trying not to accidentally stick myself?   

For the first two, I sat there for almost two hours, getting an eighth of an inch from my skin.  But the thought of sticking the needle in made me nauseous, and by the end, I had sweated through my pajamas.  Ultimately, since I was home for 10 days for Thanksgiving, my mom gave me my first two injections, and threatened to be at my apartment every Saturday morning for the rest of my life to give me my shots. 

Sorry mom, I love you, but I went in another direction.  I found this cool gadget online.  It’s called a NeedleAid (http://www.needleaid.com/)*.  For me, I could tell that the part of self-injection that was weirding me out the most was actually seeing the needle go into me.    

Needle Aid is a product out of Canada that is made for people who are needle-phobic, but have to self-inject.  It is also made for visually impaired people and people who have unsteady hands.  Basically, the gist of it is that the needle is hidden away.  You push down on part of the device and the needle goes in – but you don’t see this happening.  Then you push down the syringe all the way, and then you are done.  The NeedleAid is spring-loaded so that once you’re done, you let go, and the needle is safely back up and out.  Basically, this device tries to mirror the actions of an injection pen.

So I put on Christina Aguilera’s “Beautiful”, I prepped my syringe, and loaded it into the NeedleAid contraption.  Ultimately, it took me about a half hour to prep and then get over myself and just do it.  And when I say a half hour, I mean about two minutes for the prep and do, and about 28 minutes of sitting there thinking about it.  Because with this contraption, once you push the needle down and in – which you can’t actually see happening, but feel – there’s no turning back.  Then you plunge the syringe and go.  I decided to put the coffee on and told myself I had to get it done so my coffee wouldn’t get cold.  Clearly coffee is a great motivator for me.

My one major hope was that when I released the syringe, that it was empty.  Please universe, that syringe better be empty.  Otherwise, I may have had to kill myself. 

I even had two nurses on standby in the event that I couldn’t do the injection myself so I wouldn’t chance missing a dose.

I wanted someone to idiot proof this experience for me.  Make it a bit easier on someone who really does not want to stick a needle in themselves.  But no dice.  So I had to make the experience easy for myself.  And that’s what I did.

I’m not gonna lie.  NeedleAid is definitely the best $20 I’ve ever spent.

Please don’t think I am being a drama queen here.  Before I got sick, I literally used to have a panic attack if I needed a shot or a tube of blood drawn.  But after four sticks and 27 tubes of blood during my first rheumatologist appointment, that fear quickly dissipated.

But the fear of sticking a needle into myself hasn’t.  And one of the chief reasons for that is the whole pneumovax debacle.  If a medical professional can administer a vaccine wrong and almost kill me, how can I trust myself?

I can only hope that as time goes on, I won’t need to contemplate, and my injection time will become only a few minutes.  But I’m already down from two hours to about 30 minutes, so that’s definitely an improvement.

I’m glad I am able to do it myself now because it would have been hard to always coordinate to have someone around on Saturday morning to do it for me.

Maybe one day I won’t be nauseous at the sight of me sticking a needle into myself, but for now I don’t need to worry, because I don’t have to see it.

And I’ll concede that there are definitely less side effects from the injection as compared to oral MTX. 

For me, conquering my fear of self-injecting is a really big deal.  It’s not something I wanted to do or thought I could do.  But, in the immortal words of Tim Gunn, I made it work.

And isn’t that what’s at the core of illness experience?  Making life as livable as possible despite the confines and limitations of our illnesses?  Like I’ve said before, the boundaries of what I can and am willing to do to be as healthy as possible, are forever fluid and changing.  If you would have told me a few weeks ago that I would be giving myself MTX injections once a week, I totally wouldn’t have believed you.  And I can only imagine that as I continually skirt the boundaries, someday, maybe even some time very soon, this will seem like a very minor state of affairs.

Stick a needle in me.  Oh wait, I already did that.

And maybe, just maybe, if you’re really lucky, I’ll vlog about it.

* I purchased the NeedleAid myself and am promoting it of my own free will.  I did not receive any type of compensation from the company.