Wednesday, February 22, 2012

The Methotrexate Shortage And Me

I’m sure by now most of you have heard about the shortage of Methotrexate. 

If you haven’t, I’ll try and get you up to speed.  So, the main issue is with the preservative-free form of MTX that is used mainly to treat children who have Acute Lymphoblastic Leukemia. 

Puts a whole new spin on saving the children. 

The reason that this ends up affecting the whole pot of MTX – in other words all of the injectable forms – is because one of the major suppliers had some serious quality control issues that have severely diminished what was already a diminishing supply. 

I’ve read some accounts about this crisis that have been infuriating because they are uninformed, both from reporters and from people with RA, themselves. 

Some of these accounts suggest that the Methotrexate shortage won’t affect people with RA because most people take it orally.  In fact, I think that is dead wrong.  When I was on it orally, I was in the minority.  Most of the people that I knew that were taking it, were taking the injectable form.

The company that manufactures my MTX is discontinuing the size vial I currently get, 25 mL, and will instead be making 10 mL vials, thus cutting their supply literally in half.

A lot of people have asked me if I will be affected by the shortage, and my answer is now yes and no.

Yes, if I continue to be on MTX, the shortage will most certainly affect me.  This is really frustrating because I’ve finally got self-injection down, feel like I’ve found a treatment that works, and there may be a chance that I will have to switch meds. 

But I will NOT go back on the oral form.  At the time, since I didn’t have a point of comparison, I thought I tolerated oral MTX pretty well.  However, now that I am on the injectable kind, I realize how awful I felt while I was on the oral, especially the day I took it. 

But unfortunately for me, this matter has become more complicated.  I had my every-three-month blood work on Friday.  And I received a call from my rheumatologist’s office on Monday, informing me that my liver levels have increased yet again – from just a few weeks ago when I had labs drawn for something else, and my rheum claimed it was because I still had a high concentration of MTX in my body from Wednesday as opposed to Friday – so I am off of MTX for the next two weeks.  Then I need to have the labs re-drawn, and we’ll go from there. 

So I’m not sure if I will get to stay on MTX, which is frustrating since I feel like it is working pretty well, and I hate making med switches. 

I’m not sure if the silver lining is that if I have to go off of MTX, I won’t have to worry about how the shortage will affect me any more.  But   

Apparently, currently, there are hundreds of drugs that are at risk of running out.  It’s simply an issue of supply and demand.  But maybe if the government worked harder at finding cures for diseases instead of having to rely on medications that ravage our bodies, none of us would be in the position to worry about things like this.

We have enough to worry about.  Life with chronic illness is complicated.  We shouldn’t have to worry that there won’t be enough of the drugs we need to stay alive.  

Thursday, February 16, 2012

Illness Doesn't Rhyme With Romance

Another failed romance just in time for Valentine’s Day…

If you’re a reader of this blog, you know that one thing I really struggle with is relationships with men.  I really didn’t start dating until after I got sick, which I think has caused the two things to become inseparable for me.  It’s like I can’t look at one without examining the other.

For me, graduate school has been overwrought by my health issues.  Plain and simple.  How could I fully enjoy grad school when my entire time here has involved re-inventing my life?  It has been a constant struggle, but I’ve managed to stay afloat.

I can’t really say that as far as romantic relationships are concerned. 

I met a guy at a friend’s party.  We met within the first five minutes and literally spent the rest of the night talking.  I’ve never had such an instant connection with someone before.  And it was really nice to meet someone in-person first and not online.  And we began what would turn out to be a very short-lived relationship.  He was the first graduate student I’ve ever dated, which I guess is kind of weird.  It was nice to feel like we were in the same place in our lives. 

And I had a moment with this guy.  A moment of absolute truth.  I’ve never felt so vulnerable in my whole life.  And I’ve never voiced these feelings out loud to anyone before.  It was me, completely laid bare, laying it on the line, and having to be okay with the results of my brutal honesty.  “I’m so pissed off right now.  This fucking sucks.  Why can’t one thing just be normal?  Am I really worth all of this effort?”

I said it, and didn’t want to eat my words.  I said it, he listened.  And comforted.  And that’s not why things ended. 

Getting hurt hurts.  It’s not fun to realize that you just entered that conversation.  That things are ending.

A loss is a loss.  You’re brought into someone else’s world, if only for a brief moment, and then that’s it.  And what do you do with the thoughts and feelings that occurred during that time?

Since my ex-boyfriend dumped me a year ago, for me, dating has been a series of missteps after missteps.  What if I’m alone forever?  What if my ex-boyfriend was the best, closest thing to love that I am ever going to get? 

I realized something recently.  At one point, I would be intimate with someone only after they knew about my illnesses.  Maybe I feel this way because I’ve shared something so deep about myself, that it’s okay to bare it all.  But what happens, then, when you want a relationship to move forward, but you don’t feel like disclosing?

That’s not really the issue here because I got a call from my doctor when I was with him.  He could tell that I was distressed by the phone call, which was to tell me about abnormal labs.  So the circumstances required that I be honest with him. 

Again, I’m reminded that just because a guy is okay with the illness baggage, for one, it doesn’t mean he’s the one, and two, the relationship has to last long enough that that treatment turns into behavior and action. 

I think a lot of people look at me and see someone who is fiercely independent, that doesn’t need a man.  And the truth is, I guess I don’t need one.  But I want one. 

But the reality is, I cannot be spontaneous in the way that other 20-somethings can.  I have meds to take and things that I have to think about that take precedence over movies and dinner dates and sex.  I talk more about this in my HealthCentral post this month, on Sex and RA. 

All that said, I celebrated the single girl’s Valentine’s Day, complete with chocolate, strawberries, and the usual side of meds. 

But I am more than this moment.  And I am more than these illnesses.  And someday, I will meet someone who sees me and loves me for me.

(As for the most recent labs, my rheum thinks that it’s because of when I had the labs drawn and when I had taken Methotrexate.  I honestly don’t believe that theory because of how high the liver enzymes were, but if he thinks I’m fine to stay on MTX for now, I’m not going to argue, because it’s working.)

Sunday, February 12, 2012

Does Grief Have An Owner?

* I’ve been noticeably absent from the blogosphere.  The last few weeks have been pretty bad.  I’ll outline one reason in this post and another in my next post. *

When I first got sick, I was trying to be fiercely independent.  Illness impacts those around us, just as it does ourselves.  I never really asked my parents, but I’m sure they grieved the loss of the life they thought I would have, or the fact that my life was forever changed and there was really nothing they could do to change it.

And so it goes that when a person dies, there are many people that grieve that loss, not just a mother, father, or wife.  In some cases, maybe the person had only met the other once, but had been deeply impacted by the interaction.

Maybe it’s an author whose books you’ve read and loved. Or a celebrity.  Or maybe it’s an uncle, as it is for me.

My uncle passed away this week.  He had been dealing with cancer for a long time, but I don’t think I ever expected that he would be gone.  And now I can’t believe that I’ll never get another chance to see or talk to him.

I wish somebody would have told me that my plan to visit my aunt and uncle this summer probably wouldn’t work.  I wish somebody would have suggested I go out there sooner.  And I wish that I could have been there for the funeral.  But going out to Oregon would have been a complicated task.

My grandparents and my aunt went out there.  But I was basically told not to go.  And it makes me wonder: Am I not grieving, too?  Isn’t it a loss for me, just as it is a loss for them? 

Is one person more entitled to grieve than another?

Is a mother entitled to grieve more than a friend? 

We are the only one’s who truly know what our relationship was like with another person. 

When my cousin died several years ago, I was a bit flummoxed by the way his mother was acting compared to his wife. 

But we all have the right to grieve in our own way (and for that matter, in our own time).

In some ways, I regret not going to my uncle’s funeral, not asserting my right to be there. 

For now, I hold on to the good memories I have of him.  I think that the way my uncle lived was laughter with a side of life.  Whenever he was around, we were constantly laughing.  And the love that he and my aunt had for each other was second to none, and is something I hope I find for myself someday.

And even though he was a doctor, he was one of the most compassionate people I have ever known.  And our bond was made stronger by our illnesses.  I filtered a lot of my medical stuff through him.  And we both understood how good the good days could be, and how bad the bad days could be. 

I remember the last time I saw him, a few summers ago.  We drove to the Oregon coast, had lunch, and bought a gift for my aunt.  I was taken with the beauty of the surroundings.  And it makes me laugh to think back to the fact that at 23 years old, with my uncle, was the first time I had ever had that awkward conversation with a guy about needing to go buy tampons.  He dropped me off at a drug store, ran in to the grocery store next store, and told me he’d meet me back at the car in five minutes.  He let me do my thing.  And I will forever cherish that I got to spend such a nice day, just him and I.

I’m 26 years old.  I’m not a little girl anymore.  I understand death (objectively) and the emotions that come with it.  I’ve come to believe that when someone lets you into their world, even if only for a brief moment, you’ve become a part of that.  And losing that connection is hard.

And we all have a right to grieve, whether we knew the person personally or not.  So even though I didn’t get to say goodbye, I am grieving.  I wish my aunt and cousin peace.  And I hope that what will linger now that my uncle is gone is the way he lived life, his bright spirit, and his unending compassion.