I May as Well Jump in

I started this new blog to have a place to talk about my illness and share my hobbies, yet here I am six months later, still struggling to find the words. My feelings regarding NMO are very complex and have a tendency to change rather frequently. I can begin composing a post and by the time I finish I realize that the end contradicts the beginning. For now, I'm not even going to attempt to express my thoughts since it likely wouldn't be coherent. I'm just happy my disease no longer occupies my mind every waking moment.

For the past few weeks Chai and I have been taking advantage of global warming by spending a little time outside. She runs wild in the yard multiple times a day but I hadn't been able to take her on a legitimate walk for over a year and a half. I can only manage a short trail and I'm not up to doing it every day but Chai seems to forgive me. It's incredibly sweet to watch her get excited when she realizes I've grabbed my keys without putting her in the kennel first.

After a couple of weeks of walks in the sun it finally rained a few days ago. We opted to skip the muddy trails and instead visited the beach yesterday. It was absolutely gorgeous and nearly deserted but for a few old men in their camouflage waders digging for clams. Somehow the air by the sea always manages to be thick with magic, even more so when the sun is shining down and it's just a girl and her dog against the world.

Winning my Day

Fatigue has changed just about everything in my life. Not only am I wiped of the energy to accomplish anything but my brain gets overwhelmed trying to keep up with processing what it needs to. I'm often reduced to spending entire weeks laying in bed or on the couch because I hurt too much to move. I start to get down on myself because my house is in a perpetual state of disorder. The whole thing is ridiculous. I know that I'm doing the best I can but it still gets to me.

Lately I've adjusted Chip Kelly's "Win the Day" mantra to suit my life. The idea is to look to the future but don't spend all of your time worrying about it, do what you can today and the rest will fall into place. As it pertains to my current life, winning the day involves completing one basic task everyday. This could be starting a load of laundry, cooking a pot of black beans to use throughout the week, or simply taking out the trash. It seems pathetically small but considering there are days I can't even muster the energy to eat, loading my dishwasher can and has left me in tears.

I don't always win the day but it gives me a place to start. Although the goal is small, it's realistic for where I'm at right now and helps me put things in perspective rather than drowning in feelings of uselessness. Today my mom and I went to see Ender's Game and I did a little laundry. Sure, I needed to take some pain pills after folding my tank tops but I won the shit out of this day and I'm going to win tomorrow too.



Photo is from earlier this year when my mom and I stopped by the Wooden Shoe Tulip Farm outside Portland after doctor appointments.

Getting Treatment!

Yesterday after much back and forth between my doctors and insurance company I was finally able to begin treatment for NMO. I am receiving infusions of a medication called Rituxan (Rituximab). Basically, that just means I sit there with an IV drip of the drug for 4-6 hours. They start the drip off slowly and increase the speed every 15 minutes as long as I'm tolerating it reasonably well. The goal is to get to the speed they normally use of around 375 mg/hr.

I got up to 100 mg/hr before it became difficult to swallow and my throat felt raw. My mom alerted the nurses to the fact that my throat was swelling closed and I was having difficulty breathing. They rushed in, turned off my drip, put me on oxygen and administered a steroid. As soon as the steroid hit I was able to breathe easily again. The infusion center nurses were really on top of it, it's nothing new for them. The on-call doctor was brought in and he and my nurses discussed what happened and decided to start up again but not go past 75 mg/hr since I react at 100.

My 4-6 hour infusion has now been going for 14 hours and I have approximately two and a half left to go. That's completely okay though because the hospital has excellent pizza and I got to spend some time with friends who came to visit. Oh, and I finally started in on the postcards I got on a recent vacation. So, hospital time can be super productive if you plan in advance. I even brought my crochet.

I am thrilled to finally receive this medication. It is going to suppress my immune system which will make it more difficult for my rogue antibodies to attack and damage my eyes, brain, and spinal cord. It won't fix the damage that's been done but should help to stave off new attacks which is so important for me since damage from attacks can be permanent. Once I'm done for the day I'm going to do a happy dance (I'm leaning toward a sick girl's version of Thriller), eat breakfast, and then sleep. Okay, so I'll probably binge watch something on Netflix but sleep will be in there somewhere.

I'm home now, I didn't have any adverse reactions when we kept it at 75 but it did end up taking over 16 hours. I go back in two weeks to have it done again, this time we'll know to ask to be scheduled for first thing in the morning. Im going to go curl up under a big crocheted blanket and under a fluffy black and white kitty who seems to think I'm some sort of pillow.

Deciding on a Medication.

As I was packing for vacation I received a call from the doctor's office that my appointment scheduled for the 16th wasn't going to be soon enough. With NMO you can go to bed one night with eye pain and wake up functionally blind and the same goes for paralysis so it's imperative to start treatment as soon as possible. I went ahead and rescheduled my appointment for yesterday.

After discussing the disease a little bit we moved on to what to do next. Today I'll be having some blood tests and chest x-rays done to be sure I don't have any ongoing viral infections and then hopefully in the next two weeks I will have my first infusion of Rituximab. Rituximab is often used in combination with chemotherapy to treat certain types of cancer. My doctor thinks this is the best option for me as it is fast acting and offers long term protection. I'll have to have two infusions every six months. My doctor thinks the infusions are the best option as the pills take too long before they become effective and I am at high risk for relapse. Now we just have to see if my insurance will cover it as the treatment is insanely expensive. I know it's petty and I will gladly take whatever medication will keep me healthy but of the three medications commonly prescribed for NMO, Rituximab is the only one that does not have hair loss as a side effect. This isn't something I discussed with the doctor but was something I discovered upon doing research when I got home. Considering that my hair is the only thing that reminds me of healthy me when I look in the mirror, I count keeping it as a win.

It's been a busy week and it's only going to get busier. Aside from the lab tests I have to see if I can hunt down a flu shot as it's not recommended to get vaccinated once on Rituximab as it's an immune suppressing drug. It's okay that I'm busy though, it finally feels like I'm making progress.

Neuromyelitis Optica

Within a day or two of sharing my Multiple Sclerosis diagnosis the MS specialist called and said he would like me to undergo further testing. He wanted me to have another blood test and a new lumbar puncture. After finally receiving all of my previous MRI scans he thought there was a possibility that I actually had Neuromyelitis Optica (NMO) and not MS.

I asked him if I could do the blood test first and if I tested negative for the NMO antibody could we then move on to the lumbar puncture; I still have bad memories from the first four LPs I had done. He acquiesced but as I had tested negative last year for the NMO antibody he warned me that I would likely end up having to go ahead with the lumbar puncture.

My blood traveled to the Mayo Clinic and the results traveled back - this time the test was positive. I have Neuromyelitis Optica. NMO is considered a rare disease. There are approximately 4,000 cases in the U.S. although the number is likely greater as it is sometimes misdiagnosed as Multiple Sclerosis. It used to be considered a severe form of MS but is now known to be it's own disease. The treatment is different as some MS medications can actually make NMO attacks worse.

A really simplistic way to describe NMO is that my body is attacking itself. It's battle plan is to specifically target my optic nerves, spinal cord, and sometimes my brain. In order to stave off these attacks doctors generally prescribe immune suppressing medications. The bad news is that NMO attacks are aggressive. The good news is, if treated during an attack, the damage may not be permanent.

There is no way to know when an NMO attack will happen. I'm going to try to live my life in such a way that I'm not always waiting for the other shoe to drop and hopefully I'll have some degree of success with that. I'll be following up with the specialist in the next few weeks to discuss treatment. For now I'm staying strong and learning what I can about my disease.