29 10 2011

I was hoping to update today saying that I woke up without a fever and I’m miraculously better. Unfortunately, not so much.

Instead, I woke up with a fever of 101.3. Then I had to take tylenol and get to work.

My family and I have been having serious conversations. My mom wants me to go back to Mayo Clinic and get checked out there. My parents both want me to get back on prednisone, and my mom wants me to be on IV steroids.

My doctor wants to see if the Cimzia can turn me around this weekend. If it doesn’t, we have to start thinking about backup plans. This, as I’ve said before, is a pretty scary thing.

Here’s a lesson for all of you. It’s so important to be aware of your medication’s side effects and to be an advocate for yourself. In that vein, we’ve researched the other medication that doctors keep bringing up, Tysabri. Here’s a link to the important safety information. A brain infection that has no treatment or cure? Um, not ok. Also, a greater risk the longer you are on the medication as well as a greater risk if you have been on immunosuppressants in the past (which all my medications are) means that no matter what doctors say to sugar coat it, the risk is serious.

Have you ever seen Joe vs the Volcano? Super amazing movie that nobody has heard of. Joe is diagnosed with a “brain cloud” and has six months to live. It has no symptoms. We call this brain infection that Tysabri has a brain cloud, although it really isn’t as funny.

So as a patient, it’s my job to tell doctors that I’m uncomfortable with this treatment. It’s my job to do the research and find all the information I can. Could this medicine really help me? Yeah, it could. But the risk, although mathematically small, is too much for me.

When I thought I was allergic to rubbing alcohol, even the allergists I saw told me that it was “impossible, because it was too rare.” First of all, that doesn’t make sense. Rare=impossible? So I researched medical journals. No, not google, webmd, or wikipedia. Then I was able to take that information with me to doctors and finally get the consideration I needed.

My medical life is in limbo right now. I don’t know what we’ll do next, if I’ll wake up tomorrow feeling wonderful or if we’ll be back at Mayo Clinic before Christmas. But I do know that I’ve done everything I can to be well, including being an advocate for myself. I am so tired of hearing people who don’t find a doctor that does a good job because they are afraid to try. I’ve shopped around for doctors until I found one that I love. Don’t settle when it comes to your health.




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