1. Lily finished second grade; it was a rough year, not gonna lie. We had some issues with other kids in her class, other kids in her grade, and just the fact that she wasn't a great fit with her teacher. Not that her teacher isn't a really good teacher - she is. She and Lily just didn't "mesh," so we had some bumps in the road. But we finished! Yay! On to third grade!
2. Lily went to Camp Victory with CG again this year. She loved it, but it wore her out; this is a good thing, in my opinion. It was exactly what she needed, too, after school finished. The way these counselors pour into these kids is what my baby girl needed to experience for a week. It was good for her body AND her soul. (photo credit: Blackhall Photography, LLC)3. Around June-July, I started going into a pretty bad flare up. My leg weakness and nerve pain got worse, my Trigeminal Neuralgia got worse, the hand tremors and weakness got worse, my fatigue went through the roof and my cognitive function suffered as a result. Internal tremors and muscle spasms started to become more frequent. I started to struggle with workouts and just walking long distances. Reached out to my neuro, who told me to stay hydrated (100 oz a day) and get lots of rest. She "could" call in steroids, but she said "They may not help if this isn't a new symptom." So, I did what she said, and I started to take some time away from my CG workouts. This was hard for me. Stepping away from something I love, a community I love, wasn't easy. I felt like MS was robbing me. And, to be honest, it was. It IS. That is what MS does. It has the ability to unexpectedly steal things from you - it can't steal your spirit, but it CAN (and often does) steal your physical and mental ability to do things.
4. However, I did CG Games. If you're thinking, "Why the hell did you do THAT in the middle of a flare???!?!?" The truth is, I don't know. If I could go back, I probably wouldn't do it. I have no doubt that it worsened, and extended, the mess I was already in. All I can say is that I finished all of the events. But it was rough on my body. My legs, my arms, my EVERYTHING started to fail on me throughout the day, and my cognitive function went out the window several times. I made it, but it was hard. I used to be able to compete 13 mile obstacle course races and be back at 100% the next day. Not anymore. Multiple breaks, iced down towels, lots of rest - and even that didn't hold the MS at bay. But, I finished.
5.Lily and Eli started 3rd grade and pre-kindergarten. They love their teachers. I love their teachers. So far, all is well. Of course, it is ONLY October 6th, so that could always change. This would be the obligatory "First Day of School" picture. He's in uniforms all year. I love this, except for the fact that he only has three short sleeved uniform shirts, so I have to make sure I wash one of them mid-week. AND, he wears "casual" clothes on Fridays...seriously, people with brain lesions need a pass when it comes to schedule alterations like this. I can't tell you how many times I've sent him to school with his uniform on, on a Friday, only to have to change him into his "casual" spare set of clothes in his backpack. Mind you, I don't always remember to update that spare change of clothes, so he may have been wearing the too-small shorts and shirt and looked like a poor homeless child a few times. Mommin' is hard, ya'll. Brain lesions or no brain lesions...but lesions sure do make it harder.
6. We went to Maryland to visit family in September. It was so wonderful to get to see our people - people we hadn't spent time with for years, like Corey's brother and sister-in-law, and their wonderful boys. I got to hang out with my parents and sisters, and their families. We spent the week at the home of Corey's parents, who live at the beach. The flight was hard on me, as it usually is. Flying, and all of the physical drain of getting through an airport and dealing with the stress of traveling with kids, is just hard on anyone's body, even if they don't have an illness like MS. But it is 1,000 times harder for someone who does have a chronic illness. Before the flight, I had thought that maybe my flare was settling slightly. But as soon as the plane took off, I knew I was wrong. It wasn't gone, or settling down. The first night there, we all went to the boardwalk by the beach to eat dinner and walk around a bit with the kids. I had to stop and go sit on a bench, because the pain and weakness in my legs was so bad that I could barely stand, much less walk. I ended up getting my neuro to finally call in those steroids for me, to try to get my body to bounce back a little. It was her usual course - 3 days of high dose Dexamethasone. For MS flares, they prescribe about 20 times the usual daily dose for us, because they're trying to stop the inflammation in our nervous system. The down side is all of the side effects of hitting your body with such massive doses of drugs at once.
For me, it's insomnia and horrible bone pain, along with a sensation of my skin burning to the touch. I usually have nausea and lose my appetite. When my 3 days are up, I then continue to experience nausea and loss of appetite, along with tons of water weight gain. I can literally see my legs and feet ballooning up from fluid. I took Pamprin this time around, to help flush it out. It took about a week for me to even BEGIN to feel somewhat "normal" again. About 10 days out, I finally started to get my appetite back. But my legs? They aren't any better.
8. We decided to get an electric wheelchair, and a handicapped placard for our vehicles, for those days/nights when I just can't do it. It broke my heart to miss out on things with the kids during vacation - and I knew that, if I had a chair, I would have been able to keep up with them and make more memories. The first time we used a wheelchair, it was at the mall here in town. Ya'll - it was hard. People are rude and thoughtless to someone in a wheelchair. Honestly, I've been one of those people, too - because I had no idea what it was like from the perspective of someone in a chair. You feel like you have no control over what's happening around you, and it's even harder when you're a young mom who is used to keeping up with two active kiddos. To be in a chair, while they're trying to run around, is NOT easy. It's such a mental thing for me, too - I was KILLING IT as an athlete. And now, just a year after the serious MS symptoms started to show up, I'm in a chair. Although, to be honest, we think I've had it since Lily was a baby. I remember having episodes of vertigo and dizziness, along with awful fatigue, when she was only 10 months old. The doc said I had a virus, or allergies, and it would pass. This happens all the time, people. This is why MS goes undiagnosed for so long. This is also why people think they are "progressing quickly"...when the truth is, they've just been sick longer than anyone ever realized.
9. I had quite a few treatments for my Trigeminal Neuralgia - facial nerve cortisone injections. Those failed. A trial of Lyrica pills - those failed. A neurostimulator implant trial, with wires going through my skin and up through my epidural space near my cervicomedullary junction. That failed. According to the pain management doc, I have an "unusual pain pattern." The neurostimulator rep said, "That type of pain is difficult to treat." No shit, Sherlock. Tell me something I don't know. So, I have an appointment with a neurosurgeon this month, to talk about the next step - Gamma Knife Radiation. We'll see...thankfully, the facial pain hasn't been horrible lately. It's still there, but the intensity has settled quite a bit. That's apparently what happens with TN. It has flares and then settles down for a while, until it eventually doesn't ever settle down anymore. The flares get closer together then just become constant. Won't THAT be fun? Hopefully, the Gamma Knife will be a good option, but we'll see. I'm a little tired of needles and procedures and shots and medications right now.
Other than that, we're just plugging along at this thing called life these days. My husband is amazing, and he does so much to help and encourage me. He helps me keep my perspective, when I want to throw in the towel, which happens often. I have a great therapist who pisses me off but also challenges me to take the steps I need to take. We have a great relationship, that therapist and me - I can flip him off and cuss him out, but I'll do his stupid homework assignments and eventually they work. Guess that's why we need people like that...
I've been coming into my own realization of what MS means to me, in my life. I think every person with this disease has their own perception of what it means to them. Some are grateful for it, because they see it as something that brought about growth in their lives. Some are angry and live not only chronically ill but chronically pissed off at life and the world. Hey, I don't judge. I'm not about to tell someone how they should deal with this shitty hand of cards. What I DO know is that I've survived some crazy stuff in my life. My road hasn't been easy. It's been rocky and full of giant fire ant piles and wasp nests and snakes and crazy armed bandits. But, by the grace of God, I always came out alive on the other side. I had some crazy nights when I probably shouldn't have lived through the night - but I did. I'm sure I'll get through this nonsense the same way - one crazy MS day at a time. One hour at a time, one minute at a time - whatever it takes. With an unpredictable, incurable, progressively disabling disease like MS, you don't have the benefit of knowing what your day or week or year will look like. You just wake up and go with what you get that day. That's hard for a control freak like me. I love predictability and plans and things that go the way I expect. MS is never like anything you'd expect. You can't expect this shit.
So, God's got my back here the way He always has. He and I have our own special relationship, and I know that He not only understands my frustrations with MS and the way I deal with it - He EXPECTS it. Because He's the one who made me the way I am - a fighter. A badass who may be terrified of the battle she's facing, but she'll grit her teeth and smile and crack a sarcastic joke anyway, because it's better than the alternative. An emotional woman who will sit in her car and cry and moan about how much this sucks, but then get out of the car and go get her son from daycare because life goes on and you can't just sit on your ass and be miserable forever. So...until next time...keep beastin' it, people.
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