Wednesday, May 16, 2012

You Win Some, You Lose Some, In The Chronic Illness Game

If you read my previous posts as of late, you know that my transition off of Methotrexate and on to Humira has not been a smooth one.  I botched my last Humira injection, which was pretty traumatizing for me.

So as the two week mark approached, I have been filled with anxiety about my next injection.  Today was hard.  I decided that since I was alone last time, that my boyfriend be present this time, as he was the first time.

I had him hold the actual pen so that I wouldn’t, consciously or unconsciously, move it away while the injection was being given. 

The injection definitely burned again, but wasn’t as bad as last time.  But we got it done.  And when I say “we”, I mean “we”.  It was definitely a team effort.  My confidence and nerves were totally shot.  I felt like I couldn’t get a good grip on the skin to pinch it, and every time I went to push the button, I chickened out.  But I finally did it. 

It’s amazing to go from a teary, freaked out mess, to feeling so great once it was finally over with.  I have to keep reminding myself that this is a new thing for me.  This is only the third injection.  This whole pen deal definitely has more of a learning curve than I was expecting.  But I guess it was that way with the Methotrexate, too. 

Ask me in a few months, and hopefully this will be second nature to me then.      

Anyway, on to other things…

The headache situation hasn’t changed.  I had a bad one last week.  My BF was amazing, though.  And I was able to recover in a few hours, which was a surprise to me.  However, since I’ve been off the MTX, it confirmed for me that these headaches are definitely still a problem, and need to be dealt with.

And I finally got someone to take notice about my headache situation.  I explained to my rheum that I had been referred to the neurologist that has clinic at student health, and that he was totally unhelpful.  I explained how I used to get headaches, but not like the ones I am getting now.  I told my rheum that they get worse when I move my neck.    

He immediately perked up at this.  He said he is concerned that I could have arthritis and inflammation in my neck and cervical spine.  So he sent me for x-rays.  He said that an MRI might be considered, but he doesn’t want to expose me to that amount of radiation if he doesn’t have to.

But guess I said all the right things, the buzz words, this time, to make my rheum take notice.  I am relieved that this is actually being looked into.  Finally.

So I was able to get those x-rays done today, while I was at the hospital.  So hopefully we will have results soon, and I hope beyond hope that I am proven right.  Not that I want to have arthritis in my neck, but that there is some concrete explanation for these headaches that I am having, for the pounding pain on one side of my head or at the base of my skull, and for the considerable worsening of them when I move my neck. 

And finally…

I am now doctor shopping for a new PCP.  I got a letter in the mail last week that mine is retiring.  This is a nightmare for me, as I’m sure many of you can imagine.  It’s hard to find a PCP who is willing to take on a complicated patient like me.  Plus, she is also my gynecologist.  So I am not looking forward to trying to find a new PCP, especially one who specializes in women’s medicine, and is willing to deal with a 26-year-old with multiple chronic illnesses. 

Bah!  Ugh!  A nightmare, indeed.

So for now, I’m celebrating the victories I had today with my rheum and Humira.  And now I have to figure out what to do about my PCP, since my insurance requires a referral from my PCP for all specialists I see. 

I wish this post was a little more sewn together, but I’m not feeling all that together at the moment.  I’m just trying to plug along, and reminding myself that in the chronic illness game, you win some and you lose some.

I lost with the MTX, but hopefully I’ll win with the Humira.  I won on the headache front because I finally got my rheum to take notice.  I lost on the PCP front, but hopefully I will find someone who was as good as she was. 

And of course, I’m winning on the boyfriend front because he’s awesome, and present to me in ways that no one else has been before. 

All and all, I guess as of right now, the odds are in my favor.  And I don’t feel like I’ve been able to say that in a long time.


  1. I am glad your shot process is going a tad bit better. They sure do sting. I also would have someone hold the injection on my leg as I pushed the button in fear of me bodily response to say, "ouch this hurts, must take the pain away". You will get better with it with time. Best of luck!


  2. Good for you, Leslie! One of the biggest challenges of chronic illness is being able to focus on something positive -- ANYTHING positive! -- when you are in the midst of so many negatives. Hope your positives continue to outweigh your negatives! :)

  3. Oh, I dread the thought of having to find a new PCP. Has your old already left the office? If you can get in touch with her, she might have suggestions for you.


  4. It's so good to find you! I was on Humira until a few months ago when I went on Orencia. I know, the Humira needles seem HUGE-very painful. Hang in there, though. I've had RA for 20 years and it's a tough one. Take care of yourself, I'll be checking back in. Joy