Sunday, April 15, 2012

Who Stole My Spoons?

I’m feeling pretty dejected these days.  I was hoping that the MTX-Humira transition would be faster and more seamless than it has been.

In my head, I know that these things always take longer, but in my heart, I want to get back to feeling good as soon as possible.

And right now, I’m not feeling that great.  I feel like I am operating at a deficit.  The minute I wake up, I’m already two steps behind, and all I want to do is go back to bed. 

I went to a formal with my boyfriend. (Yes, that’s right.  There is a new man in my life.  But more about that another time…)

I had one drink – what the hell since I’m not on MTX anymore – and the next day, I felt like I might need a week to recover.  It wasn’t a crazy time.  We stayed at the party for about three hours.  We danced and we schmoozed.  Typical 20-something night. Probably even a tame 20-something night by most accounts.

And yet, I feel like I ran a marathon.  It’s like when 40- and 50-somethings act like they are 20 years old, and then regret it because  they can’t party like they used to.

That’s how I feel, but I’m not really sure I ever really got the chance to party in the first place.

And that makes me sad.      

Nearly a week ago, I had TB test.  This is required before they will let you start Humira.  Well, I was told to have it done on a Thursday.  But when I went to the lab, they said that wouldn’t be possible because it (the skin test) would need to be read, and couldn’t be done over the weekend.  So I waited until last Monday, and went to get it done.  The lab told me that they don’t do skin tests, but they looked, and my doctor had ordered a TB blood test (which I didn’t even know existed).

So here I am, nearly a week later, still waiting for the results, to find out whether we can move forward with the Humira or not.  They won’t fill the prescription until they get the test results (which they should have gotten in about 24 hours).  So I’ll be putting a call into my doctor’s office tomorrow, to see what’s going on.   

And I’m exhausted.  Completely.  Utterly.  I’m exhausted because of the run around that you get, when you get five different answers from five different people, and I’m exhausted because lupus and RA have settled back into the scene.

And I’m frustrated that I can’t be the girlfriend I want to be to my boyfriend. 

But oh, the fatigue.  I did not miss you one bit.  And how  you are throwing me for a loop, the longer you linger with me.

I had forgotten about the whole fatigue thing. 

I want to feel good.  I want to feel like myself again.  And I don’t right now.  My head is heavy and my brain is cloudy.  And I feel like I could sleep for 100 hours and it still wouldn’t be enough.

I don’t like this non-medication slide.  And I wish my doctor would understand this and move  a bit more quickly.  I have to rely on him because I am moving pretty slowly these days. 

I didn’t partake in the month’s Patients For A Moment because I have to admit, I’m feeling pretty much like all I am is illness right now.

I feel like this post isn’t even that coherent, and I’m not sure how I am going to write a coherent dissertation if I am feeling this way. 

I don’t feel good.  And I desperately want to feel good.

Oh how I wish I could have stayed on MTX. 

But since I can’t, I can only hope I can get on Humira as soon as possible, and that it works.

I want to be functional again.  Maybe I won’t be fully functional, but at least I’ll be mostly functional…


  1. I just found your blog. I hope you get the Humira soon and get some relief. My life changed when I started Enbrel. Nothing I've tried can equal its power to make me feel somewhat normal. Thank heavens for 21st century drugs!

  2. So sorry to hear you're suffering;( Thanks for sharing your experiences. I get a lot out of reading your blog. I don't know if there's anything really helpful I can say, but even though I don't know you, I'm rooting for you.

  3. One thing I hate about autoimmune diseases is the slow pace. Getting educated is only half of the battle. The TB test slowed me down also