Hi NMO patients and supporters,
I received a surprise call from Erin last night so I thought to update everyone on how she’s doing. It was a surprise because we haven’t spoken much. Ok – AT ALL. Erin and I used to speak several times a week and email almost daily but now that we have kids I’m happy to report that we’re just too busy.
Unfortunately, Erin’s had a rough go of her NMO (Neuromyelitis Optica) symptoms recently. She just returned home from her third round of PLEX and I could just hear in her voice the happiness to get out of the hospital and back to her beautiful son, Allen. Her MRI scans aren’t showing any new lesions so her doctors are having to rely on her word that she’s suffering in extreme pain. Although Erin receives regular Rituxan sessions, it just wasn’t enough to keep the symptoms at bay. Now her doctors wonder if she’ll need a daily dose of immune suppression like Cellcept or Imuran.
Besides the NMO, Erin has now become anemic and will require iron infusions via intravenous. This week will be quite trying as she’ll receive IV work for both her iron infusion and Rituxan.
Of course, we all understand how frustrating NMO can be. We get tired of telling others we aren’t feeling good and sometimes don’t even have the strength to say so. We get angry at our ever changing bodies. (Erin is fed up with the weight gain and inability to do anything about it. She’s tried juicing, Pilates and cardio workouts but when you’re in pain, you’re in pain.) So I was relieved to hear that Erin plans to speak to someone about her experience. She’s blessed to have a great support network. Her husband, Eric, is a God send and her extended family help her with her son, Allen. However, it’s just as important to work on our mental health so receiving perception from an outside party is not only ideal, it’s a necessity.
Mid May Erin plans to fly out and see Dr. Greenberg. She has a great team of doctors in the Denver area but like we all should be, Erin is an advocate for her own health so she’s chosen to receive an additional point of view and have Dr. Greenberg provide her with a check up.
Erin is providing almost daily updates on the Facebook groups and I know she’s grateful for all the support and kind words through her current challenges.