Re-introduction post

Hello, all! I haven't posted here in a while, and that's for a very simple reason: I don't really like talking about the difficulties I have with my arthritis. Writing about the struggles with my illness can leave me feeling a bit weak, exposed. Thing is, arthritis has been a part of me and my life for so long that discussing it as an issue or a challenge can feel a bit like leaving the bathroom door open--it's just very personal. And I don't want people to see me as "Oh, poor Heidi; she has arthritis." I want them to see me for my accomplishments, exclusive of this disease.

However, I do believe strongly in the power of the blogosphere, and my inbox has become full of enough of you kind folks responding to what I've written here and asking more questions that I've realized that there is a big need for personal information out there.

And of course, this is where I say that I'm not a doctor and that everyone's experiences with Humira vary. It's been a wonder-drug for me, yes, but that doesn't mean that you will respond to it in the same way. I love it and don't have many side effects, but check with your doctor.

In answer to a few questions/tips I've learned along the way:

• If your Humira is damaged at any time (left out at room temperature, etc.) and your health insurance doesn't offer a program to cover damaged medicines, Abbott will replace your damaged Humira dose for free. Just call 1-800-4HUMIRA and tell them exactly what happened. (They've saved me twice now--once when the Humira was damaged during shipping and once when I suffered an overnight power outage.) Hurrah for corporate responsibility!
• Humira now comes in a pen. Advantages: you won't accidentally put the needle in too deeply and the dose goes by faster. Disadvantages: you can't control the speed of the dose, and it still hurts like hell.
• Healthwell Foundation is underfunded and very slow. They are great folks, but you will have to call them a minimum of five times and fax any relevant information three to six times before waiting six months for an answer or reimbursement. Don't get mad; it's just how they are. (I just faxed my reimbursement forms to them for the sixth time--no reason why they only reimbursed for two doses, not all four, even though they did confirm receiving all pages of the last five faxes I sent over the last six months.)
• Healthwell has a form for upping your grant amount. Last year's grant ($1,400) only covered about six months of my medicine, so I found out (completely by chance; they won't tell you) that there is a form to request a higher amount the following year as well as forms for requesting reimbursement for medicine that wasn't covered when the previous year's grant ran out. Yes, it's paperwork. Yes, it's slow. Yes, you'll have to call and fax repeatedly before getting your grant or reimbursement. But really, with the current administration, we're damn lucky they have any funding at all. And they are giving us free money, so again, patience and persistence is the way to go.

Hope this helps. As I find out more about how to deal with Healthwell and Humira, I'll keep posting my experiences. Also, if I may whine/rant for a minute--StupidCare (UniCare), after 18 months of my taking Humira, now requires a pre-authorization form (not sure what the prefix "pre" means here, since I've been taking it for 18 months, but whatever) or PAB in order for me to take the medicine. Not sure why or why they haven't noticed that they've been paying for the med for 18 months, but I'll let you know as the paperwork develops.

I actually think the best solution here is a better job with better health insurance--I'll let you know how that quest develops as well!

Comments

[michael jones]

Very interesting post! I was searching for something as essential as that because rheumatoid arthritis is my pain for years! Good post! Thank you once again!

[worried]

Hello.
I have Ankylosing Spondilitis. My doc offered me Humira, cos I dont respond well to the other treament. It is kind of last chance for me. And in few weeks I will probably take the first shot.
I found lots of info here. An I want to say thanks to the person who wrote this.
I can see the last info is from 2007. And also the one who wrote it had doubts and didnt want to write more.
I dont like talking about my illness too. I feel like I am excusing myself for something. And it is so hard when you have to explain time and time again to the others why you walk this way and sit that way...
But we have to support each other and if the healthy people dont understand it is their mistake. But by writing in bloggs and forum I helped many people myself, so dont stop writting, you may feel not so well, but it feels good when you make other person with pain just like yours feel better...

[lala chen]

Good day and welcome to joy fax server: http://www.joyfax.com