Living in the In-Between

It's been a while (two months, actually) since I last posted about my journey through life with MS. The holidays were a crazy, busy time around the Trice house. We were so blessed to have family come stay with us - Corey's mom and dad were here from December 17-27. The house always smells like comfort food and coffee when they're here. They help with the kids, the housework, the meals - and they just hang out with us and play games like Cards Against Humanity (holy crap, that was a weird one) and watch movies and drink wine. We bought our first REAL Christmas tree this year. I wasn't sure I was going to be able to go with them, due to how my MS-BS has been kicking up lately. But I wasn't about to miss the kids' first trip to buy a real tree. So, I took my pimp stick with me and off we went, in the old front-wheel-drive sleigh to the Home Depot, where we bought our very first bonafide, real-life fir tree. We even posed for a picture in front of the fabric Christmas curtain. Pimp stick and all.

So Christmas came and went, and then came January, when we got to drive to see my nephew, who is currently serving in the military. Even though we only got about 5 hours with him, it was so good for my heart to be able to take him to lunch and just hang out and chat with him about LIFE. He is such a wonderful young man, with his entire life in front of him. I know that God will use him to do great things. 

As far as the MS - well, my doc tested me for a couple of sub-groups of MS - anti-MOG disease, and Neuromyelitis Optica. She was concerned that my level of disability was going DOWN, and that it hadn't stabilized on the Gilenya, my current MS medication. I've been taking that for almost a year, and she states that I should have stayed at the same level of function (since I haven't had any new lesions or lesion growth) since I started Gilenya. They're also concerned because my pseudo-relapses, which are times when your current/existing symptoms flare up, are lasting for weeks at a time, and leaving me in a worse state than before I have them. This is also very uncommon, apparently. So, she opted to have me get the blood tests for anti-MOG and NMO, to see whether either of those were in play here. Thankfully, those were both negative. However, that also means that either my disease course is just "like this," or I am having a negative reaction to the Gilenya. We talked at length at my last appointment, and decided we are going to move to a different, stronger medication. 

There are a few different kinds of MS medications, but you have to remember something. None of them treat the symptoms of the disease, or "heal" the damage. Their only job is to slow the progression of the disease by preventing new lesions from forming, preventing current lesions from growing, or POSSIBLY shrink current lesions. They all work in very different ways, with different chemical makeups. There are three basic "types" of meds - the oral pills, the injectables, and the infusions. 

There are a few oral meds, and my Gilenya is one of them. They are all about the same "strength," according to my doc, so she doesn't think that going with one of them would be much better than what I'm already on now. As far as the injectable meds, they carry a high risk of depression, and I already struggle with that - so that's a no as well. That leaves the infusion meds. The options for me would be Tysabri, Ocrevus, or Lemtrada - in that order. Tysabri was my first choice, because there are a lot of good reviews on that one - how it actually has a GOOD side effect of helping with fatigue and cognitive function. However, there is a virus that about 50% of people have in their body - they are considered "carriers" of the virus, but they don't have symptoms. Anyway, if you have high levels of this in your system, you cannot take Tysabri, because it could lead to a fatal brain infection called PML. Low/negative levels are considered anything under .4, and they test you before they ever let you try this infusion. My levels are 1.64, so that means Tysabri is no longer an option.

Next in line is Ocrevus, which carries its own set of risks as well. We're going through the labs and insurance approval process now; it takes a while, so I don't think I'll hear anything for a week or more. If I am approved for this one, it will work like this: The first infusion will be split into two separate half-infusions. I'll get one on one day, then go back two weeks later for the second half. You have to go to an infusion/chemotherapy center, because the medicine is infused into your body through a vein, and the nurses have to monitor you during and after the infusion for any reactions. If you have a bad reaction, they stop the infusion and you have to change to yet ANOTHER medication. Hopefully, I won't have any bad reactions and the insurance won't be an issue, but we'll just have to wait and see. 

The final medication option is Lemtrada, which you usually cannot even get unless you have failed at least two other MS medications. This medicine is, according to my doctor, the strongest one out there, and it's the closest thing they have to a "cure" right now. You get two "sets" of infusions. The first set lasts almost a week, and you get a 4 hour infusion every day. Then you get another set of infusions, over a 4-day period, a year later. After that, you potentially don't need any other MS meds for several years - and some never need any more meds. The idea is that they bind to and kill the lymphocytes (white blood cells) that are involved in the process of the immune system attacking the myelin (nerve covering around nerves, this is what causes MS lesions). The immune cells which grow back after treatment apparently don't cause damage to the nerves anymore. My doc actually said it's very close to the stem cell transplants that are currently in trials for MS remission. 

That's the plan for now. It's a "let's wait and see" kind of plan, the kind I don't really care for myself. Unfortunately, this is the disease of "hurry up and wait," which I'm sure is one way God is changing me. I never really had any control over my future or my plans - but I sure wanted to think I did. 

I did get a new pain medication, and that has been helping with my Trigeminal Neuralgia (facial nerve pain) and all of the other nerve pain I have every day. We've upped my dose of Baclofen, which is my muscle relaxer, because my spasms are increasing and becoming more sudden and more painful. The other night, I had a full-body spasm that was so bad that my body hurt afterwards. It was one of the most violent spasms I've ever had. The downside to the new pain meds and the increase in others is that I am now more drowsy, dizzy and weak than I was before, and it almost makes me want to quit the pain medication. Sure, I don't want to be in pain - but I need to be able to function, and the mental affect of these meds are making that so difficult, so many days. I may try to just get the dose of the pain med lowered, and see if that helps. 

I use my cane more often these days. It helps on those days when something is in a spasm and it's affecting my walking. 

I've learned, over this past year, that managing a chronic illness like MS is almost a full-time job. It is exhausting and stressful, which certainly doesn't help how I ALREADY feel just from the disease itself. 

Yet, I look back and see God's faithfulness in how all of this happened...

For a while, I was angry that none of my doctors back in Maryland had ever done any tests, 8 years ago, when I had my first spells of dizziness and fatigue. 

Then I realized something - If I had been diagnosed back then, I wouldn't have been HERE, in the Dallas/FW area, with the knowledge and expertise of multiple teaching hospitals and some of the best medical talent in the nation. And, if had been diagnosed at 31, when I first had symptoms - I wouldn't have had Eli...and I cannot imagine my life without that boy in it. 

So, truthfully, the delay in diagnosis was a blessing. It was God's way of giving me this sweet little guy who lights up our lives. 

God also led us to an incredible group of friends at our church back in October 2017 - just a month before I heard the words "You may have Multiple Sclerosis" for the first time. He brought this amazing group of families to us at the exact moment that I would need the support. He knew how much our lives would change this year - and He knew that I wouldn't always be at CG, because of how I would be feeling the past several months. He knew that I would be missing that community of athletes terribly, and so He brought me another family - one who has showed up in our lives, without fail, whenever I've needed a listening ear, a hug, a prayer (or two or three), or a laugh. Always there. Always. God is so amazing at how He perfectly arranges our circumstances, even in the midst of our hardest challenges or most devastating heartbreak - so that we never have to face any of it alone. I can look back and see His constant faithfulness, even when He didn't take away the pain or weakness, even when I can't sleep, even when our funds got low because Corey lost his job - despite ALL of that, He was always right there. 

I'm spending more time with Him lately. I love starting my day out with 20-30 minutes of time with Him. I may be sleepy, and I may doze while I'm praying - but I'm pretty sure He's smart enough to figure out what I was trying to say before I started to snore a little. I'm learning to look more at the good things in my life, and to just accept this disease for what it is right now. Not that I'm giving up - I'm not. But I have to be able to work around my MS, doing what I can, when I can - and not feeling guilty about the rest. 

Will the Ocrevus work? I hope so. If it doesn't, or I have a bad reaction or horrible side effects, then I guess it's on to Lemtrada. Not sure what the other options are after that...maybe they'll have some more medications available then. Who knows. I know it's not my job to try to figure it out, though. I just take each day as it comes (or at least I try to anyway). I'm not always very good at not feeling sorry for myself, and I still worry. But I'm working on it, and, most importantly, I'm actually trying to let God work on it now. 

Ya'll have a good weekend! I need to go bathe that amazing little blessing of mine, Mr. Eli...

Moving Forward

I've thought about this post for a while, because I never want people to feel sorry for me or pity me. Pity just isn't an effective support mechanism, and I feel sorry enough for myself as it is. But there are real, raw truths when you're dealing with a life of chronic illness, and they need to be laid out there. Not to make anyone feel bad or criticize how others respond to this illness - just to bring awareness to the very real struggle that we face. 

When you're first diagnosed with a disease like MS, you're practically inundated with support from friends, family and long-lost acquaintances. Everyone wants to know when they can bring you a meal or how they can pray for you, or (my favorite) they have the perfect cure for your disease. You get text messages of support, phone calls, cards, and posts on your FB timeline. It feels great to know that you have such a wonderful team around you, ready to walk through this with you. 

Then, the days turn into weeks, which turn into months. The influx of texts and messages slows. You find yourself canceling prior arrangements with friends, which means that, over time, you're invited to fewer and fewer things. It's not an intentional slight, by any means. It's just a combination of things - folks don't want you to feel bad for having to commit to coming, or they're afraid you'll just cancel anyway. OR, worse, they're afraid you'll come out of obligation and feel horrible the whole time. You get used to watching parties and events happen without you, and you just start to adjust to this being the new "normal" now. You no longer get as many offers for a meal, or help with the kids "just because." It's understandable, though. MS is not a short-term illness that will resolve after treatment. It's not like breaking a limb or having an appendectomy. You go through those kinds of things, and there's an end in sight. There's a point where you no longer need assistance, and you can return to your normal way of life. It's easy to support someone through a season like that. You show up, take your meal, check on them once in a while, then you're done. With MS, those "seasons" never end, they're unpredictable, and there is always the possibility that they could suddenly get worse. So, it's hard to support someone with a chronic illness. I get it. It's exhausting to hear them talk about their pain, and it's frustrating to never be able to really DO anything to make things better for them. Folks just don't know what to say to someone with a chronic, disabling disease like MS, which is why they just start to back away slowly. 

This is when your eyes start to open to the incredible support system that God has put around you for this long road. Between the parents who listen and make you laugh during the tough times, to the in-laws who come cook and take care of the kids while you rest, to the friends who text you just to see how you're doing that day. These are the ones who are at your side through all of it, no matter what. No matter how weird or painful or challenging the relationship gets, they don't back away - they press in. They respond to every crazy text message from you about how crappy your day is going and how unfair MS can be, and they don't judge you for feeling that way. They are intentional about reaching out and grabbing hold, so that you don't have to feel alone as you fight to hold onto some sense of normalcy. 

I am so incredibly, eternally grateful for these types of relationships. But I'm not at all angry at the ones who have backed away - it doesn't mean I've lost those particular relationships. It just means that they aren't designed to walk this road with me, and that's okay. It doesn't mean they don't care; far from it. They love me just as they always have. God didn't call them to walk the road of chronic illness with someone else, and that's just the way He has designed things. They have another road to walk, with someone else, for another season. He has given me exactly who I need for this journey - no more, no less. 

Today, as I type this, I'm fighting painful muscle spasms in my left leg. By far, my left leg is the most often affected. I've had pain and pins & needles in my left arm and hand lately, as well. On Wednesday and Friday of this week, I tried to forget about the MS and how exercise affects me. I thought, "Hey, why don't I just TRY jogging or jumping at the workout today? Why don't I see how I do if I don't modify everything?" So, I tried it on Wednesday night at my workout. On Thursday, I had all over nerve pain most of the day - it was the kind that feels like the underside of my skin is burning. Like it hurts where my skin touches the layers of fat and muscle underneath. It is horrible pain. However, I had also forgotten to take my CBD oil on Thursday, because of the change in routine with it being Thanksgiving. So, part of me wondered if that was the cause of the pain. On Friday, I felt better, so I went to a workout that morning. Jogged, jumped, didn't really modify much. Friday afternoon and evening, that burning pain came back. It sucks, so bad. It's hard to do anything (sit, lay down, etc) because your skin moves against the fibers underneath it and the pain gets worse. 

The physical pain isn't the worst part for me, though. The worst part is when my Neurologist says things like, "Your particular disease isn't that bad, really. You don't have that many lesions, and they aren't in a bad place, and your leg issues will go away eventually." It's been a year, and I've only gotten worse. I think she's trying to encourage me, but I need a straight shooter. Don't BS me, lady. I'm no dummy. I have done my research, and I know that MS is a progressively disabling disease - one that is unpredictable. So there's no way she could possibly know whether my leg issues will "go away" or not. I surely hope so, but I'm not gonna hang my damn hat on that. This is real life, and she doesn't have a damn crystal ball. The "other" worst part is looking at where I was two years ago - two years ago today, I was running over 6 miles at a time - for FUN. I look at those stupid Facebook memories, and it just drags me down into the "What the hell happened to me?" cycle of thinking. I became a trainer so that I could help people see what they are capable of - so I could help guide them on their fitness journey, and so they could be a part of the CG community in the process. Now, I look at myself at workouts and think "How could anyone be inspired by the girl who walks the whole thing? I'm not exactly the picture of fitness here." Again, not looking for pity - just telling you like it is inside this crazy head of mine. This is how MS jacks with your confidence. I get it - MS changes your entire world. You can't stop it, you can't predict it, and you can't control how it affects you. You literally have to live hour-by-hour...or, if you're really feeling sassy, day by day.

I am having to learn how to let go of the athlete I USED TO BE, and take care of what I have now. That sucks for me, and, honestly, I still haven't accepted it. Just being real here, ya'll. I want to be what I was, physically, before all this. I'll get past it, one day. But grieving who you were - and who you likely won't be again - takes time. A lot of damn time, just so you know. 

Normal Brain MRI w/contrast dye

My MRI, w/contrast dye..the white spots are MS lesions

Welp, I need to go feed the natives. They're getting restless and begging for nourishment. 

Later...

One Year Ago Today

One year ago today, I was sitting in my car, in the driveway, and hearing the doctor ask me "Have you heard of a disease called Multiple Sclerosis?" Talk about turning my world upside down, twisting it around a pogo stick, and sending it bouncing across the universe like a drunk monkey.

I went from believing I could do anything, and having very few (if any) physical limitations, to being faced with questions like:

"Will I lose the ability to walk? To see? Worse, to swallow or breathe?"

"Will I be around when my kids have kids? Get married? Graduate college? High school?"

"Will I be able to work and drive in 10 years?"

I've been a fighter my entire life: a strong-willed ball buster who doesn't put up with crap from anybody. I've gotten in the ring with stuff that nobody should experience; but, by the sheer grace of God, I faced it and came through it stronger. He has had His hand on me for years. No matter where I went, He was there. And when this diagnosis hit, I knew, in my head at least, that He'd still be there. But I didn't really FEEL it - not in my heart. I felt overwhelmed and anxious and alone. With people all around me, supporting me, loving me, praying for me - I still felt alone. To be honest, there are many moments like that for me these days. The presence of relationships doesn't negate the feelings of loneliness and isolation that creep in on the days when the pain is bad and I can't see past the fog of grief over the way things "used to be."

Imagine being a competitive athlete - the type who could run two obstacle course races in one weekend, the type who just continued to see growth and advances in their fitness level, the kind who loved getting up to workout and wanted nothing more than to guide others on their fitness journeys. Imagine being the mom who spent hours working around the house and doing things with the kids on the weekends, the friend who always wanted to get together and do things. It was great. I was happy with who I was, and I was growing.

What a difference a year makes...

Now I workout maybe 3 times a week, 4 if I'm feeling up to it. My fitness routine has really been stepped down several notches, to try to keep the pain and muscle weakness and fatigue at bay. I struggle to find words and remember names, I drop things constantly, I sometimes need to use a cane or (worst case) a power chair. I have a handicapped tag for my car. My muscles spasm, my legs and face burn from neuropathic pain, my hands shake, and I fight nausea. I struggle to focus and understand things, and I am so very fatigued, almost all of the time.

Sometimes the hardest part is emotional, though. Living with the constant fear of waiting for the next shoe to drop - THAT has been tough for me. I have always been one who liked being in control; I wanted to set long-term goals and plan for the future. With MS, I can't always make long term plans, or keep them. And I DEFINITELY can't control anything anymore; of course, maybe I wasn't ever really "in control" before, but that's another post. This type of uncertainty just leads to a hopeless feeling for the future, combined with fear and just total sadness. You feel like you've had part of you stolen by a vile enemy, and that makes you angry. But this disease in incurable, which leads you to feel helpless. It's just one giant black hole after another, sucking you into hours of depression.

Where's my faith in all this, you ask? It's there. It's still there. It's always been there. It's just harder to find some days than others. The good news? My MS is "stable" according to my annual MRIs; no lesions on spine, and my brain looks the same as it did last year - still have multiple lesions, but no new ones. This is good. This is technically considered "remission," when talking about Relapsing Remitting Multiple Sclerosis. The funny (not funny) thing about that word, though, is that it's not remission in the way you would think about remission. It conjures up images of someone who is symptom free and feels like they did before diagnosis. And, for a few MSers, that's how their disease works. But, for me, and for many others like me, it doesn't work that way. Our current lesions carry symptoms that we still experience, even when the relapses are technically over. MS is progressive, so I have had symptoms that have slowly impacted me more and more, even though I've had no new lesions for a year. They fluctuate, day by day and even moment by moment. I may have a day when I have very few symptoms, and I may have a day when they totally overwhelm me. It's been hard trying to get used to the unpredictability.

I've been reading this book by Craig Groeschel called "Hope In the Dark: Believing God Is Good When Life Is Not," and he talked at one point about Habakkuk, the prophet in the Bible. Habakkuk came to God with a lot of questions about the pain that God's people were experiencing - questions about why God was allowing injustice, and why he wasn't intervening. Questions like "How long must I call for help, and You do not listen?" Man, I have echoed that same prayer so many times over the past year. Friends have prayed for my healing, for symptoms to subside. I have prayed, family members have prayed. I have been prayed over and I have read books and Scripture about healing. I've researched until my eyes crossed, searching for healing and cures. But, so far, I haven't been healed. My lesions are still there. My symptoms still crush me at times. I have yelled at God, I have cursed Him, I have told Him that I don't want anything to do with Someone who COULD heal me, but won't. Someone who would allow a young mother to have to fight this battle for the rest of her life. Someone who would let my kids have a mom with a chronic illness.

Later on, in the same chapter of Habakkuk, God answers the prophet. He says " “Look at the nations and watch - and be utterly amazed. For I am going to do something in your days that you would not believe, even if you were told." People read this all the time and they quote it, thinking it means that God is about to do great and wonderful and pleasant things, that He's about to open the floodgates of blessing. But, if you keep reading, it doesn't mean that at all. Actually, God continues by telling Habakkuk that He's going to raise up a fierce enemy to bring pain and destruction to God's people. Basically, God says that it's going to get worse - much worse - before it gets better. That's a damn hard pill to swallow. But at the end of this conversation, Habakkuk talks about how he's seen God's faithfulness for years, and how he knows God's character is good and His love is strong. He knows that, eventually, God will bring rescue, wholeness, and healing. He says, "Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails, and the fields produce no food, though there are no sheep in the pen, and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior. The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights." Despite the loss and pain that is coming, through all of the unfathomable struggle, God was his strength when he was weak, and He lifted his heart above all the mess and the noise.

Basically - like Habakkuk - I've spent the last year trying to reconcile my faith with a future that holds no resolution, from this vantage point. I'm looking out over a path of pain and weakness, with no end in sight. I cannot see the light at the end of the tunnel. Shoot, I can't even FIND the damn tunnel. And, honestly, I don't really feel like rejoicing most days. But I haven't thrown in the towel yet, and I'm not going to. I'm going to keep pressing into Jesus until He gives me words and the peace and the strength I need to get through, because I know He didn't bring me this far just to bring me this far. As my friend Anthony says, "I may not like His plan; I may think His plan sucks. But I know His plan is ALWAYS better than MY plan."

A Day In the Life of a Mom with MS

4:30am - My alarm goes off and I hit snooze. I have two more that will go off within a couple minutes, and I really don't want to get out of bed to go workout. I know I NEED to; exercise is crucial for maintaining mobility and helping manage some of the other symptoms of the disease. I finally roll out of bed around 4:40 and get myself ready.

5:00am - I workout with several Camp Gladiator friends, usually outside in a parking lot at one of the locations around my house. In the summer, it's really hard for me to workout on hot/humid days; in the colder months, the bite of the cold air can be a challenge, too. People with MS have wonky thermostats, and our bodies are extremely sensitive to weather changes; they cause our symptoms to really crank up the volume. But today, it's okay. It's cool and mostly comfortable outside. I don't run during the workout; not because I can't, but because I know I will suffer for it later. Running and excessive plyometric (jumping) work tends to tax my legs too much these days, and it can also cause my feet and thighs to go numb during a workout. So I mostly walk, and I modify almost every exercise. My arms are weaker these days, too, so I have to account for that. I've learned several "Guidelines" for MS patients, in regards to exercise, but my favorite are these: 1. Don't ever push through the pain, and 2. If you feel WORSE two hours after the workout ends, then you did too much. So, I pace myself. I may not sweat or strain as much as I used to, and I'm definitely not the fastest person there. But I go, and I get some movement in, and that's enough for me. The encouragement from the people there, many of whom know what I'm going through, is just an added bonus.

6:15am - I make sure to stretch and sometimes foam roll when I get home. My muscles and tendons are prone to spasticity, which affects my mobility and causes pain. When I miss stretching after a workout, I usually pay for it. I get ready for work and get the kids up for school.

7:30am - Finally in the car to take the kids to school and head to work, and all I want to do is go back inside and take a nap. I'm usually exhausted by the time I sit down in the car. Some days, I start out the day with nerve pain in my legs and/or my face; those days are particularly difficult. Constant pain only adds to the exhaustion.

7:45am - After dropping Lily at school, where I stay in the car and go through the drop-off line, I end up at Eli's daycare. Next year, they'll both go to the same elementary school; but he's still in Pre-K at his private daycare. Because my legs are hurting and weak, I pull into one of the two handicapped parking spots at the front and hang the tag on the mirror. Sometimes these spots aren't available, because parents have been known to use them when they're in a hurry. I guess they figure that there aren't that many of us who use them legitimately, and they'll only be there for a few minutes. I try not to let it upset me; stress would just make me feel worse. I worry, as I get out of the car, "Will today be the day someone tells me that I don't "look" handicapped?" It happens, although I've been lucky enough that it hasn't happened to me yet. 

8:05am - I get to work, pull into one of the many, monitored handicapped spots, and gather myself before going into the office. Once I get settled at my desk, I'll take my DMD (Disease Modifying Drug) and my daily Vitamin D3. I take them every day, around the same time, because you really shouldn't skip a dose of the DMD, unless you want to have a relapse. 

10:30am - I'm starting to feel fatigued already; when it hits, it hits like a brick wall. It hits, regardless of whether I've had 1 cup of coffee or 3 cups and an energy drink. The number of hours I sleep makes no difference. My immune system is malfunctioning, and the processes involved in the disease of MS cause extraordinary physical and mental fatigue. Because I'm tired, my brain starts to misfire. I start to struggle with focus, comprehension, and word-finding. My legs feel like I've run the Boston marathon.

12:30pm - Lunch time. I'll try to eat something relatively healthy, then follow that up with more caffeine and one of my supplements for nervous system health. I try to wash my dishes in the sink, but my hands drop them unexpectedly, getting water everywhere. I think to myself, "This is why I don't hold anyone's babies or children anymore. I can't even hold onto a Rubbermaid container." And it's true. I have no way of knowing when the signals will get crossed and my hands will let go of something. It's happened more times than I can count, and it's one of the most frustrating symptoms. 

2:00pm - My legs are killing me. The pain shooting down the back of them feels like someone stabbing me with a knife along the entire length of my hamstrings. Today, I'm also struggling with spasms in my right hand, along with loss of coordination in my pinkie and ring finger on that hand. It happens sometimes. I clench my fist and shake out my hand to try to settle it down. Sometimes it works, sometimes it doesn't. 

3:45pm - The nerve pain has led to nausea, so I take an anti-nausea pill from my purse. It helps a little with the tummy pain, but the nerve pain is still there. I now have a headache as well, a known side effect of the pill I took.

5:00pm - It's time to go home; despite the pain and craziness of the day, I was able to get quite a bit done during my day. I've been blessed with a great job, working within a great company, for an amazing boss. They are all aware and supportive, and I love the work I do. 

5:40pm - I text Corey from the car, in the parking lot at daycare. "I'm feeling really crummy," I tell him. "I need to rest a little bit when I get home." I go in to get Eli, and his teacher tells me he wasn't listening very well today. I know she doesn't think anything of passing this along to me; she thinks this is what she SHOULD be doing, and I don't disagree. But as I stand there, with pain shooting through my legs, fighting nausea and a headache, all I want to do is fall down into one of the little toddler chairs. I impatiently say, "I'll talk to him, but I really need to go; I don't feel great." 

6:00pm - I get home and Corey comes out to the car to help me get inside with Eli and all of his take-home stuff from school. My legs are barely functioning by this point in the day. I get inside, set my stuff down on the counter, and go upstairs to change and sit down in our bedroom for a few minutes. I know I need to make dinner, and give Eli his bath, and make lunch for tomorrow. But I'm so incredibly worn out by what it took to get through the day. Because of this exhaustion, and the stress of the responsibilities the evening holds for my tired, sore body, my pain level may increase. I head into the bathroom and take one of my muscle relaxants, then head back downstairs. 

7:00pm: Dinner time. Many nights, Corey already has dinner ready, or he's preparing it when I get there. Most of the time, we eat in the living room, so that I can sit comfortably and put my feet up on the ottoman. It helps my nerve pain to have my legs fully extended when I'm resting. Sometimes, the nausea will keep me from wanting to eat a regular meal, so I'll opt for something quick and light - a bowl of cereal, soup, or toast. Most nights, I can still eat normally, though. If the Trigeminal Neuralgia (called TN, the facial nerve pain) is bad in my jaw/cheek area, then I have to be careful what I eat. Certain textures and temperatures will crank up the pain. 

8:00pm - Story time. If my TN is acting up, I won't read the bedtime story, because talking aggravates the pain. Instead, Daddy will read. We say prayers and put them in bed. They sometimes ask God to help Mommy feel better, when I'm having a really rough day. I hope this journey is teaching them to have hearts of compassion. 

9:00pm - I finally head to bed. The muscle relaxant I took earlier in the evening usually helps me avoid tremors and spasms at bedtime; but, sometimes, if I'm overly tired, they come anyway. Those are the nights when I have to adjust other medications, just to help me get to sleep. 

So, now you know. This is what many of my days look like. Not EVERY day looks like this, though. Some days are better, and I LOVE those days. Some days are worse. 

Every day is a blessing, though. (All you have to do is watch a few episodes of ER to find that out; yikes. THOSE people have real problems.) 

Loss and Transition

Some of you know this by now, but many of you don't. On Tuesday, October 9th, my husband was given notice at his job. His job as a Senior Web Developer is going to be outsourced now, so he's actively pursuing other opportunities. When he called me at work to tell me about it, it was all I could do to not fall apart crying. He loved the man who owned the company, and he wholeheartedly believed in their mission. They also gave their employees the "Cadillac" plan as far as insurance and benefits were concerned. We were never worried about whether this procedure would be covered or that medication would be filled. We knew we would always have a way to get our children the care they needed, and his role gave him the flexibility to work from home. He has been the one to always pick up Lily from school and take care of her in the afternoons. Needless to say, this news rocked our family hard.

On top of that, I went to see the Neurosurgeon, Dr. White, at UTSW, about two possible procedures to help with my Trigeminal Neuralgia. The two procedures are Microvascular Decompression, where they do a craniotomy (brain surgery) and work on the nerves and blood vessels that are causing the pain. The other option is called Gamma Knife Radiation, where they use targeted radiation beams to kill the nerve. They both have varying degrees of success, and they each have their own set of risks. The MVD obviously has more risks than the GKR, because one is an open incision procedure IN YOUR BRAIN...and the other one is an outpatient radiation treatment. These procedures have about a 60%-80% success rate at the most, and that's typically when the patient has no other complicating factors, such as Multiple Sclerosis. With typical, primary TN (meaning TN that is not caused by something else), doctors will typically see some favorable results with these procedures. They fix the issue, then you're done. However, with Secondary TN (meaning it is caused by another problem - in my case, the MS lesions) the results aren't always that great. The doctors could "fix" the nerve issue, but if another lesion grows in an area that triggers that TN pain signal...well, it just pretty much negates the treatment or procedure altogether. Not to mention the fact that I have this pain on both sides of my face, which means I have "atypical" TN. For many TN sufferers, the pain is only on one side of their face. With it being bilateral, they would have to schedule me for two separate procedures, because they will not do both at the same time - this is partially an insurance thing, and partially because they want to test the effectiveness of the procedure on one side of the face before they do it on the other.

This is the machine they use for the Gamma Knife procedure.

Dr. White and his clinical coordinator kept saying, "This procedure is usually the most effective, " blah, blah, blah. Then I would say, "Well, what about with MS?" They would give me this blank, almost uncomfortable look and say things like, "We aren't really sure" and "The results aren't as consistent" and "MS is another animal." So I left their office without scheduling anything, and I'm not really sure I will schedule anything. I'm still debating. I may opt for Gamma Knife Radiation, or I may do nothing. My TN pain has been relatively quiet lately, but I'm getting those familiar shocks again that indicate a flare up is on its way. I guess I'll have to make a decision here soon...

I've been fighting really horrible MS fatigue lately, both mental and physical. Dr. John Schafer, of Mercy MS Center in California, states that researchers believe there are immune system hormones at play in Primary MS Fatigue. Cytokines are hormones that are released during inflammation in your body, and they are what makes you feel weak and exhausted when you have the flu. The process of demyelination and the decline in nerve conduction likely also causes an erosion of muscle strength and endurance. MS also jacks with the nerve pathways in your brain, which means you have to enlist more regions of your brain to do something that would only require one region of the brain in a healthy person. We believe this overactivity wears down your brain circuits, which is what leads to cognitive fatigue. Dr. Augusto Miravalle, chief of the Multiple Sclerosis Division at the University of Florida College of Medicine, says that it's similar to having multiple windows or programs up on your computer at once - it tends to slow down the machine's processing speed. He states, "There are neural structures by which MS patients use networks not normally used by individuals with intact brains in order to compensate for brain damage." (Reference, Vicky Uhland, Momentum Magazine Online, NMSS, link to full article here.) At this point, I'm waiting for my insurance to approve a medication that has been shown to help with MS Fatigue. I'm trying to be hopeful. I can't seem to get enough sleep or caffeine anymore. I find myself struggling more with word-finding, memory loss, and physical weakness. Some days are tougher than others.

This brings me to the topic of this post - as a family, it seems we've been hit with a long season of transition and loss. For me, I lost what I saw as the perfect picture of health and wellness, when I was diagnosed with MS. With every flare, my body deteriorates more, and I find myself wishing I could just go for a run like I used to, or work harder at my workouts, or just not have to deal with pain anymore. I miss who I used to be, but I guess that's where the transition comes into play...and transition is hard and painful and sticky. Corey's in that same place with his job search, as he spends almost all of his waking hours searching and preparing for a new opportunity. We're hoping and praying that he will find a great company, and that this will happen soon.

Neither of us really want to be here right now - having to find a job, having to adjust to this normal that is a chronic illness, having to see less but trust more. It's just HARD, ya'll. Don't get me wrong - I'm incredibly grateful for our home, the health of our kiddos, my job, our church family, my CG friends. But sometimes I still get stuck in the "How much more do You think I can handle, God?" When I'm laying in bed, my legs burning from nerve pain, desperately trying to find a mildly comfortable position - I sometimes tell Him how angry I am that He let this happen. When Corey got the notice about his job, I was even angrier. "Why would You do this, God? How the hell do You expect us to survive? What are you doing?!?!?"

I'm not saying we shouldn't trust God with our lives and the way He weaves our tapestry. But I AM saying that He is big enough to not be bothered by our angry complaints and our tearful screams to heaven. He has seen Corey and I through many a rocky road, even though, at the time, we couldn't see our hands in front of our faces. But we always ended up looking back and marveling at how God made a way. 

Mothering with a Chronic Illness

I have Multiple Sclerosis - that's obviously not a big secret. But there are so many other types of chronic illness - Lupus, Fibromyalgia, Lyme Disease, Hashimotos, Crohns - and the list goes on. Many different forms of sickness, but all debilitating, just the same. Sure, we all have our "not so bad" days, when we get a glimpse of the person we used to be - before a diagnosis on a medical chart sent our world reeling. But many of us have days that are challenging - days when our faith and our hope are pushed to their limits and we struggle. Days when it's hard to just get out of bed, much less face the day and all of its responsibilities. Days when just taking a shower wears us out, when the pain shoots through our bodies and threatens to send us to the floor. Days when we're too sick to eat, but the weakness of not eating makes us hurt even worse. 

Now, add to that the stress of parenting, and the guilt that often comes along with it. 

One thing that has been so hard for me to deal with is the fact that I can't physically do the things I want to do with my kids anymore. Sure - some days I feel good and I can walk them to the playground that's across the street from our house. There may be a day when I can make cookies with Lily or draw with them. But I can't be the mom I WANT to be for them - I can't spend more than an hour with them anywhere before my batteries run out and I have to go home. I can't run around with them outside or spend all day going and doing fun things with them, because I need breaks. Lots of breaks. It's not just my legs, either. If absolutely necessary, I can use the wheelchair for things like the zoo or park, or just sightseeing downtown. The real "kicker" is the energy it takes for me to mentally focus and engage - and the drain of trying to ignore the physical pain for any length of time. It's just too much. 

They tell you that, with MS, you have to be wise in how you use, and conserve, your energy. Living with a chronic illness is extremely draining on your body, and you need to save that energy for the things that are truly the most important. Being exhausted constantly because you're pushing too hard is a recipe for disaster, especially with MS. It can cause symptoms to flare, it can put you into a relapse, it can cause you to get sick with whatever funk is in the air that day. You have to be kind to your body and give it the rest it needs. 

But this is so hard when you have small children who NEED you. I'm blessed - I have a wonderful husband who does so much with them already. When I'm not feeling great, he takes over and does everything - giving baths, brushing teeth, reading stories, playing games - you name it. He's pretty great. Despite all of that, though - I still feel badly that I can't be as active as I want to be for them. I can't tell you how many times I've had to say "Mommy can't right now, buddy...she doesn't feel well." To see their faces fall when I say that - it's fucking heartbreaking. There was one instance when one of them actually told me, when I promised we'd go do a certain thing, "But we WON'T because your face will hurt..." UGH. Ya'll, it's so very hard. 

Add to that the fact that I'm still working full time. Thankfully, I'm in an office setting, so I don't have to stand or walk all day, and I'm not required to do manual labor. But it's still a mental and physical drain at times, despite the fact I LOVE my job, my coworkers, and this amazing company that I was blessed with when I first moved to Texas. God placed me here for a reason, and they have been so accommodating as I navigate all the MS symptoms and the doctor's appointments and procedures. I am thankful, and I see myself working here for years to come.

But it all builds sometimes, and by the time I get home in the evenings, I am beat. It's hard to have to tell your son "I can't pick you up tonight, buddy; Momma's too weak." Or to tell your daughter, "I really can't go outside tonight, baby. My legs are done." Thankfully, Eli's good with snuggling up next to me as I rest in our bed, or on the couch as we watch Gilligan's Island. Lily is pretty creative, too. She'll bring cards to me and we'll play "Go Fish" as I sit and rest. The two of them love to "do Mommy's hair" which usually turns into a ridiculous fiasco consisting of water bottles and glittery barrettes and hair spray and tiny ponytail holders, during which I usually get accidentally smacked in the head with a hairbrush at least once. 

Kids are flexible, and I know that. I know that the two of ours will know that they are loved. They will know that Corey and I are their biggest fans, and that we believe in who they are and in their potential for greatness. They will know that Mommy didn't just quit when things got tough. She fought to keep life going, even when it sucked, even when it hurt like hell - she woke up every day and DID LIFE. 

If you're a mom with chronic illness, please try to give yourself a break today. Trust me, I know it's hard. We feel limited in what we can give our littles (or bigs), but our love hasn't been limited at all. And, in all reality, that's what they want from us the most. 

School, Summer Break, Vacation, and a Bad Flare

A lot has happened since my last post in May. I'll give you the cliffnotes. (You're welcome.😊)

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.

 7. The resulting leg weakness and pain have left me with some mobility issues - I sometimes have a tough time walking long distances. My legs just want to quit. So, my workouts have become less frequent and less intense. I've added in one day of yoga every week, and I modify a lot of the exercises at CG workouts. I don't run much anymore, and I don't do a lot of jumping or hard core plyometric work. But I still try to keep moving, when I can.

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.