I know it’s a gripe that I share with most NMO patients – having to swallow a lot of pills several times a day. I organize my medication in a daily pill organizer. Because it has become part of my daily rituals, I find myself often second guessing if I even took them today. Being able to check my pill organizer answers that question.
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.
After more than a year of doctor appointments, strategizing the best plan, endless guidance from Erin Miller (and other patients) and a whole lot of patience, my husband Mike and I are pleased to announce that in August 2012 we’ll be expecting an addition to our family.
Living with Neuromyelitis Optica (NMO) I’ve been really nervous how this will all work so I’ve hesitated sharing the news with everyone. But trust me, I’m super thrilled and really wanted to shout from the rooftops.
The process to get pregnant was lengthy but we got the end result we wanted so I’d do it again in a heart beat. Having NMO, it was obvious that we’d have to do in-vitro (IVF). At first it took some convincing to get all my doctors on board. With very limited information available on how NMO and pregnancy work together, we all had to assess the potential risks. I’ve been on Cellcept for over a year so we had to strategize how to get me off these immune suppression drugs, allow it to get out of my system while going back on Prednisone to provide me with some protection – then pray. Yes, I did a lot of praying that I wouldn’t suffer from another attack during the transition. While we did the drug transition we also had to do all the standard tests for IVF. Finally we started the IVF process in early November. Every day my poor husband had to inject 3 needles into my stomach. You’d think after all the needles I’ve received living with NMO that I’d be ok with them but I’m more terrified of needles now than before. Almost every morning I went for an ultrasound to check on how well my body was producing new eggs. When there were enough, we did the extraction and 3 days later, only 1 lonely egg survived that we implanted. It took 2 weeks sitting and waiting and thinking the entire time that I was potentially growing another human being inside of me. Stress is a major contributor to my NMO symptoms so I took walks, did a lot of reading and tried to cook new recipes (I’m no where close to being as talented in the kitchen as Christine Ha).
I am now 5 months pregnant and it’s everything everyone says it is – it’s magical, uncomfortable, surreal and life changing. I can’t help but worry like other new parents about normal stuff like technique, money, and lack of sleep but occasionally I’ll also allow myself to worry about my NMO. Will my symptoms come back with a vengeance after delivery? Will I suffer from another major attack? Will I be able to keep up with a toddler one day? I won’t be an advocate and tell other NMO patients that they can get pregnant if they want. Every case is different and you’ll have to work hard with your team of doctors to discover what’s best for you. What I will say is that if getting pregnant is something you want to do then definitely investigate it. I never like to say no to an opportunity and I’m sure glad I didn’t this time.