Are you a little bit better? #lupus

My rheumatologist asked me an interesting question a few months ago. “Since last year, would you say you are 40% better (since starting Humira)?”

It was a hard question to answer. I feel like yes, some things are 40% better. But I am now dealing with new things, and some other things are worse. So to me, it depends on what symptom you’re talking about. I feel like I’ve traded awful symptoms for other awful symptoms, which doesn’t much feel like relief.

Reacting my frustration, he went on to say that when a person feels a little better, they start to want to feel a whole lot better, and I agreed, although I felt like that wasn’t quite what I was feeling.

I’ve thought about this conversation for a while, because I haven’t been able to figure out how to put into words how I am feeling, but in the middle of the night a few nights ago, I figured out what has been bothering me.

Biologics like Humira are really hard to obtain. Insurances don’t want to approve them because they are new and expensive. They often subject a patient to step therapy, which is just trying cheaper medications that probably won’t help first, before approving a biologic. There is so much time that gets wasted while this goes on. So many side effects that are dealt with, without much relief. A lot of waiting for something better. There are a lot of hours spent playing phone tag and fighting with the insurance. Even if insurance eventually runs out of reasons to deny a biologic, they really drag their feet about it. Phone calls are “missed”. Faxes and paperwork are “lost”. There’s always some asshole who can’t spell Lupus, who doesn’t have one iota of medical knowledge telling you no. Then, if you are lucky enough to have jumped through enough hoops, you’ll get to schedule a delivery. And you’ll cross your fingers that you don’t have to chase down the delivery man because some of them can’t be bothered to get out of the truck when they realize your apartment has a gate.

And you cross your fingers that this is even the right medication for you, while you wait for a few months to see if it even works.

With all of the stress and waiting and fighting to finally get the medication in your possession, you would think it was the holy grail of treatments. It must be good if it’s this hard to get.

That is what has been bothering me. It took a lot of fighting to get here and I just feel like the amount of relief I’ve felt so far doesn’t equal out. It’s just been a very “this is it?” feeling.

 

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4 Comments

  1. It’s amazing what insurance companies WILL cover though isn’t it?…your mom is with you baby girl, every phone call, every fax, every piece of paper, every mile, every step of the way, right by your side, happy and lucky and determined to be there, as are your brothers. We love you!

  2. Hey Jill!
    Don’t be frustrated, I think every little improvement counts! Even if humira is not the magical cure, you still have other possibilities and combinations of meds. You’re just still on your way finding the best one. (:
    At the moment they are researching a lot about autoimmune diseases and there will be many new treatments in the (hopefully near) future. That’s what I read and noticed when I was looking for information on pub med. (:
    One of the docs I went to found a cure for Scleroderma… Maybe someone is already on the track developing one for Lupus. Don’t lose your hope! (:

    • No, I haven’t been on lately and I have to approve comments first I guess. Sorry about that. I know you are right about finding the right combination of treatments. Sometimes I wonder if I even have found the right combination of diagnoses yet. I’m going through some testing right now, which I plan to write about. I hope you’re doing good lately.

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