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. 

When Chronic Illness is Awkward

Let's face it - sometimes chronic illness is just an awkward topic of conversation, and MS is no exception. As humans, we're typically "fixers." We like to fix things, get the job done, resolve the unresolved issues, find the cure, do the surgery, get the closure. It's super uncomfortable when things are left open, incomplete and broken.

I mean, really - this shouldn't even be a thing, in the world we live in today, with all of its scientific wisdom and medical advancements. It makes no sense that we'd have diseases with no cure yet, especially when we've known about them for so long. HIV, cancer, multiple sclerosis, asthma, Alzheimer's...and the list goes on. Those who find themselves diagnosed with these beasts often face a long road, full of questions, uncertainty, anger, fear, and isolation. There are treatments - drugs and procedures - but nothing, as of yet, to definitively CURE these life-takers.

It's a frustration that I never understood until I got my diagnosis. And it can be downright debilitating at times, sucking the hope out of the air and making it impossible to breathe, making you doubt the heart of a God who allowed you to get to this place.

I have MS. The meds I take only serve to "hopefully" slow the disease progression - but the success rate is only 52%. Not great odds, but better than some of the others that are in the 30's. And these meds don't do anything to minimize my current symptoms. My cognitive function is still affected - whether it's remembering simple daily tasks to being able to think of a word I need during conversation. Legs get weak and wobbly, and I sometimes lose feeling in the lower half of my body during exertion, such as workouts or walking for long periods. Nerve pains shoot through my hands sometimes, down through my legs and into my feet. My damaged nerves send mixed signals to my muscles to contract at the wrong times, and I end up feeling like my calf muscles are cramped, just walking into the store. I always fight vertigo, dizziness, nausea, loss of appetite...some days are worse than others. My meds, and the disease of MS itself, affect the way my immune system responds to infection. I'm constantly on edge around people who have any kind of respiratory infection, cold, strep, flu. Any time I go to a hospital, it's risky. I currently have what we suspect is a really bad bladder infection, and the first round of antibiotics didn't work. So, we're trying to get ahead of it with cultures and tests and more drugs. Statistics show that Urinary Tract Infections are one of the main causes for people with MS to be admitted to the hospital. They cause our symptoms to flare, and they can quickly progress to the kidneys and put our bodies into sepsis, if we don't treat it appropriately and quickly.

I live with the realization that I could wake up without the ability to see. Most of the time, people who deal with vision issues from their MS, find that they see great one day, then just don't the next day. I could wake up with no feeling on one side of my body, having lost my ability to walk or drive. It doesn't mean these things would stick around forever after that; many times, depending on your specific disease course, you can rehab back from these or get some high dose steroids, and your body will bounce back. But sometimes, it doesn't happen that way.

I could develop incontinence, or lose my sense of balance and start falling. Any, or all, of these things could happen, at any time. There is no way to predict the course of this disease, or whether a certain medication will work for you. You just have to take each day and deal with that day as it happens.

And here's where it can get awkward for friends and family...

Our natural tendency, as the family or friend of someone who is struggling with a chronic illness, is to ask "How are you doing?" any time we talk to them. And as someone WITH a chronic illness, I appreciate this question. It shows me they care enough to ask a question that could have a really long, hard answer. Most of the time, though, the answer isn't going to be what they're hoping for..."Feeling great!" isn't going to usually be the first thing out of our mouths. Maybe "Not as bad as yesterday...just really tired," or "Had a rough doctor's appointment...I'm pretty disappointed."

Here's my tip: When you talk to someone who gives you these answers, you don't need to worry about having a solution. You don't need to fix how they feel; they don't expect you to. Just listen. Say things like, "That sounds like it sucks," or "I can't imagine." Don't tell them they need to get more rest or see a different doctor or maybe their meds aren't working or they need to stop pushing themselves so hard. Just listen, and let them know that you agree - these things DO suck. It's okay to tell them that, even though you can't fix it, you wish you could, because you don't like to see them in pain.

Don't assume that they're doing something wrong because they don't feel better. That's just how MS is...and Lyme disease, and Lupus, and Fibromyalgia. You just have really crappy days sometimes, and it's not because of anything you've done. You could be doing EVERYTHING right, and you're still just gonna feel like shit.

Honestly, most people living with chronic illness keep it hidden as much as we can. Chances are, when you see us out and about, laughing and playing and having fun - we're still in pain. We're still trying not to fall over, trying to remember your name, trying to make sure we're close to a bathroom, trying to look full of energy even when our bodies are screaming because we're so fatigued. Most of the time, you'll never know, because we're trying to live like "normal" people...and we have families and husbands and wives and children to raise and jobs to do and houses to take care of. So that's just what we do...

Finally, please don't avoid us. Don't stop inviting us out because we always say no, or we always seem to cancel. Maybe we'll feel well enough to take you up on your offer this time. It could be that we feel okay-ish and won't back out of that girls' night out. Don't stop asking us how we're doing, calling us, texting us...MS is an ISOLATING disease, ya'll. Please know that we don't want it to be that way.

It's gonna be awkward, and it's probably going to be awkward A LOT. But it's OKAY. We aren't judging you...we get that you're trying to figure out how to deal with this, too. It's hard for you, just like it's hard for us...just in a different way. We can be patient with each other, and realize that sometimes, it's just uncomfortable. But as long as we know you're there and you truly care and want to be a part of our journey - then it's all gravy, baby.

Enough with the Doctors Already!!

Seriously...want to know why it's been 21 days since my last post? (And, no, I haven't been in rehab.) I've been a little busy with managing the craziness that is an MS diagnosis.

We're talking doctor after doctor after doctor...and it's a little tiring, not gonna lie. In the past 21 days, I've had a doctor's appointment with my Primary doctor for shortness of breath, a trip to the ER, a spinal MRI, and more appointments are on the way. Much of my time is spent on the phone with medical offices or hospitals or labs; if I'm not on the phone with them, I'm emailing them, or going to see them. Ya'll - it's EXHAUSTING. I'm convinced that 25% of the exhaustion MSers feel is that of having to spend so much time managing a chronic illness. Seriously. I bet if we didn't have to do all that shit, we'd probably have just a bit more energy.

Anyway...

So I've been having issues with shortness of breath while at rest, and during conversations. Never while exercising or training at workouts...just when sitting, resting, or having a long conversation. My doc had me come in to see her, so she could run some labs, do an EKG, and have me do a Spirometer test. EKG was fine. Labs were a little wonky, but all to be expected when you're on a DMD like Gilenya. I registered a "poor effort" on the Spirometer, so she advised me to check with my Neuro on whether they believed it was from the meds. (This is where I kind of made my OWN call, since I know my body better than the Neuro, and I'm not really in the mood to change my DMD just yet. See, I have had these shortness of breath issues for about 6 months, and I only started Gilenya in February. So I don't think it's from the Gilenya. I think it's something else...)

So, neuro called me and said she wanted me to redo the Pulmonary Function Test one more time before I see her on May 7th. My primary doctor said I should get the more extensive PFT done outpatient at the hospital, instead of coming to her office and just doing the Spirometer. I'm scheduled to get that done this Wednesday, from 3-5. After that, I'm headed to see a Pulmonologist on the 30th, so they can look at the PFT results and do their exam and try to figure out what the heck is going on with my breathing.

MEANWHILE...I had an episode last Tuesday. The night before, I had been on the phone with my Mom, and I had gotten so short of breath that I was dizzy and felt faint. So, on Tuesday I called my Primary doc and asked what they wanted me to do. (Point of note here: When calling your doctor's office, it's generally not a good idea to lead with "I'm having issues with shortness of breath.") After a few calls back and forth, my doc finally said "If you can't get in with the Pulmonologist today, then go to the ER." What the actual f*ck? Really?? The ER?? Ugh...okay, fine.

So, I called the Pulmonologist. "Nope. We can't see you without an order, and we couldn't see you today even if we HAD an order."

Proceed to ER. Do not pass go. Do not collect $200.

Fine, so I drove all the way to the ER, stressing out the entire way, which made my MS flare up and I arrived shaky and barely able to stand up or hold the pen at registration. A very tall, awkward man took me back to triage, then quickly got me in a wheelchair and tried to stick oxygen in my nose, which made the shortness of breath worse. Thankfully, my oxygen levels (O2) were fine, so I didn't really NEED the oxygen. When he wheeled me back, there were about 3 other people in the room waiting for me. It felt weird. Who the hell is this woman being wheeled back to an ER stall, with oxygen tubing in her nose?? This is certainly not the badass I see myself as...this is something else entirely. I didn't like it at all.

Oh, well...I was following the doc's orders, like a good little patient. They ran labs, kept me hooked up to monitors, did a chest x-ray. There are two things they were checking for, which I asked them to check for when I arrived: Metabolic Acidosis and Diaphragm Weakness. Google them, because they would take a while to explain. Basically, they can happen with MS sometimes. For the Metabolic Acidosis, the main test is an arterial blood gas draw, which they did. When they do routine labs on people, they take the blood from a vein. With an ABG test, it's from the artery. Sometimes, they can accidentally hit a nerve in the arm when they do this. Well, that's what happened with me. From the time of the appointment through that night, my arm was in horrible pain - from fingertip to shoulder. It was gone the next morning (the pain, not my arm...my arm was still there). With the chest x-ray, they were checking for Diaphragm Weakness, but mine looked fine. X-ray was unremarkable...which is a fancy way for radiologists to say "I don't see jack shit on this thing." My blood pressure was really low, hovering around 92/14 for most of my time there. Not sure why, or if it's connected to the shortness of breath. I'm hoping the Pulmonologist can help me with that question.

The only thing they said they noticed was that I had a UTI...now, UTIs can go really bad, really quickly with MS and DMDs. But I'm on antibiotics now, so we're all good. (It would seem that this infection was part of the reason for my EXTREME fatigue over the past few weeks...apparently, bladder infections sometimes manifest this way with MSers - fatigue, feeling "off", symptoms flaring.)

Overall, the nurses were really nice, although the in-room bathroom had no toilet paper or paper towels. When I send in my payment, I'm going to add a sticky that says "Ya'll need to use some of this to go to Costco and stock up so your patients have some way to wipe their rear ends and wash their hands."

Four hours later, I was discharged and went to get my boy at daycare.

I had a spinal MRI on Saturday, this past weekend, with and without contrast, as per usual. They were looking at my cervical and thoracic spine, checking for any lesions that may have developed since the first spinal MRI last November. Today I picked up the report and we're all clear! No lesions in the spine yet, which is AWESOME!!

So, for now, we're just waiting for the rest of the tests and appointments to try to figure out the breathing issues. Then I'll follow up with my neuro's office for a routine check up on May 7th.

See now why it's so exhausting to keep up with it all? You truly have to be your OWN advocate, too. You have to educate yourself, and be confident enough to question your doctors (respectfully when at all possible), and ask for the things you want/need to feel better. No one is going to know your body the way you do.

This past weekend was full of wonderful moments with my babies and my hubs. We had so much time together. It was amazing, and I loved it. So grateful for their unending love and support!

I'm moving along in my Camp Gladiator training process, and I'm LOVING the chance to have fun doing what I love by investing in others and helping them discover not only their OWN strength, but the strength of the community that is CG.

Have a great week, ya'll!

Brain Pics, Migraines, and Easter Fun!

It's been exactly 13 days since my last post. In a previous life, I might have felt bad about that...you know, letting so much time lapse without posting, wanting to "be consistent," blah, blah, blah. Not anymore. The "new" Ella-Kate has realized that #1: I have no one to impress, and #2: There are more important things than blogging these days.

Between figuring out ways to deal with the symptoms that the MS Monster hands you every day, to juggling a full-time job with mothering two kids, to training to become a part-time Camp Gladiator trainer, to keeping the dog alive - there are a lot of things on my proverbial plate right now, and blogging is usually not at the top of that list. Here are the most recent updates!

Since the ENT didn't find anything to explain the hearing and increased vertigo, my neuro sent me for a new brain MRI. They always do MS MRIs with and without IV contrast, which is not really fun, but it isn't horrible. You get used to these things after a while. I counted up the total number of MRI scans I've had in my life, and I got quite a few over the years: 1 for my knee, 3 for my spine, 1 for my sacrum, 3 for my brain - 8 total. You get used to being very still, even when it gets REALLY uncomfortable...or your nose starts to itch.

This MRI was set up with an MS protocol, which was not the case with the November MRI, which showed the lesions that led to my diagnosis. I also got this one done at a different location, so it was a different machine. This led to the two scans being somewhat difficult for me to compare, since this one was so much brighter (and the views were different). Thankfully, the report was done by lunchtime the next day, so I went by and picked it up at lunch. Usually, I'm pretty good at breaking down the terminology in these reports, thanks to my years working in a medical office setting. This one wasn't that easy, though. Finally, I heard back from Emily (my favorite nurse at the neuro's office) and she told me that they "didn't see any changes," which means the MS is "stable" at this point. This also meant they found no reasons for the hearing/vision/vertigo issues. They said they could prescribe meds if it didn't "go away," but I said I would just tough it out. You get sick of adding new meds to an already packed medicinal regimen, so sometimes you just choose to live with it. That's how I am with  my nerve pain. Two of the three nerve pain meds caused bad reactions in my system, so I'm not really anxious to try the third med. I just do what I can with the meds I have for now...because you get tired of feeling like a test subject after a while.

I've been having horrible migraines here and there...one lasted an entire 24 hours, and it actually got WORSE when I took the prescription Imitrex that they gave me for my headaches. I've read this can happen with Imitrex, so I wasn't surprised. I had to leave work and go home for the rest of the day...it was so horrible. (Do you see now why I don't like adding new meds??) I've had more since then, and they suck, ya'll....but I'm just trying to handle them with caffeine, ibuprofen, tylenol, whatever I can while at work or out and about with the family. I try to minimize activity when I have them, but that isn't always possible.

Here's the thing, guys: Sometimes, MSers just get headaches. And sometimes, we have hearing issues. Or vision issues. Or leg weakness and pain. It just happens with this disease. There isn't always a set pattern of when it will happen, and it's usually not very predictable. I like to say that the one predictable thing about MS is its unpredictability. Maybe you have to cancel plans because you suddenly feel like shit...it's not personal, it's just the disease. It doesn't mean we just changed our minds and want an "easy out" for a prior commitment. It just means that we got thrown an MS-curve ball, and now we have to adjust for it. It's just the way life goes.

My friend Alex King posted something on her Facebook page today about how people with MS sometimes handle their disease, with a "poor me," attitude. I responded with this (and she and I agreed I should blog it, lol): "It is definitely a tough adjustment, and I alternate some days (in these early stages of DX) between being pissed off, sad, happy, relieved, depressed, and exhausted...mostly exhausted. LOL...It's been a really hard period for me to get used to this being my present and my future. But, in the end, life goes on all around me - with my babies, my job, my husband, my passions in life. I can either give up and take up permanent residence in a place of sadness...or, I can live with the acceptance of this roller coaster as normal, and try to make the most out of all the good moments. I'll do what I can, for as long as I can, until I can't anymore."

That's it, folks. That's how this disease works. Just because we take Disease Modifying Drugs doesn't mean that we will necessarily start feeling better, or that our symptoms will go away. Our symptoms are usually the result of damage that has already been done to our nervous system. Until they find a cure for MS, not all of this damage will be undone. My DMD is supposed to be giving my nerves a break from the constant attacks of my immune system, so that (hopefully) a few lesions may have the chance to remyelinate...or at least I won't get as many new lesions. But the symptoms will remain, in most cases. It's just what happens in the course of this disease...and, as much as I hate it, it is what it is, to be honest. I just appreciate the "not so bad" days that much more.

Like this past weekend with my family - we made so many memories this weekend, despite the migraines and nerve pain and crazy weather!

On Saturday, we took Lily and Eli to the park where Lily had a play date with her classmate, Alexandria, who she told me is now her "BESTIE." This was good for me to hear, because she's been struggling with friendships, apparently. Later that evening, we took the kids to church for Easter service, then had some Chipotle for dinner. I love their bowls, and they're not too bad for you either. After the kids went to bed, Corey and I stuffed Easter eggs and filled their Easter baskets for the next day.

They slept until about 7:30 on Sunday, when we got them up to see what the Easter Bunny had brought for them. Eli told Lily that the Easter Bunny came down the chimney, but Lily swore he came through a window. Every time I would refer to the Easter Bunny as "him," Lily would say "or her." She is the epitome of girl power...she comes by it honestly, though.

We then went out into the cul-de-sac, where Corey and our neighbors had hidden hundreds of eggs for our kiddos to find. We did this last year, and they all love it. Lily helps the little ones find eggs for their buckets, and then they have candy for about 6 months afterwards.

After the egg hunt, we got dressed and went to meet our friends for Easter lunch. This family was the first family we really grew close to after moving to Texas 5 years ago. We were  new to the area and had no family here, and Tim, Jana and their kids became our Texas family. Jana was the first person to teach me how to shoot a handgun at the gun range, and that was not only how we met, but it was the start of an amazing friendship. They are now the kids' guardians, just in case Corey and I die in a skydiving accident, which would be horrible of course.

Lunch was great, and then we came home for naps (yes, I also took a nap, naturally), followed by a short trip to Wal-Mart (ugh...I seriously hate going to Wal-Mart these days), and then back home to prep for the week.

Then, this morning, I assisted at a CG workout with my friend, Sara. I'm in the middle of the training process to become a part-time/substitute CG Trainer. I won't do it full-time, but I'll help out with camps when a regular trainer has to be out for any reason, or if they anticipate a large crowd and want extra help. I'm so excited about this, because helping others realize their full potential has been such a passion of mine for so long. I've literally been working towards this for about a year and a half, and when I got my MS diagnosis, I realized that I just needed to DO it. So, I did...more on that whole journey to come!

Have a great week, ya'll! Hopefully I'll get another post in before the week is up...:-)