Cane. Walker. Wheelchair. All of these assistive devices feel like defeat to the one using them. If you have a loved one putting up a fight, this is probably why. So, when I went to see my doctors at the Mayo Clinic in Minnesota last week, I brought this up. One of them, Dr. C., watched me walk without hanging on to anything. Then he had me walk while touching the wall. While holding on to his belt loop. While walking with a walker. He told me that the level of concentration in my eyes went down considerably when I had assistance. So, I won’t look at the walker as if I’ve given up. One wouldn’t really look at me and think, “Oh. She’s given up. How sad.” I’ve already decorated my walker with streamers. And, as the streamers are getting old and tattered, I’m having my grandma Marlene make me some cloth covers to go on the front. I’m going to embrace it, because it helps me considerably. And a wheelchair. My goal now is to replace the chunky wheelchair in the back of our car currently with a—as Dr. R put it—“sexy” chair. This “sexy” chair that I have my eye on is light weight, sized to me, and the metal part of it can be something other than boring-black. The whole idea behind embracing a chair is so that my life is not limited. No, I can’t go to the mall with you, because I can’t do that much walking. No, a museum is out of the question, because you don’t have an opportunity to sit at all. So, I will embrace these more-improved-than-before devices that will help me to live a normal life. And yes, we can be sure that when I get a chair that is not rented, I will TOTALLY make it mine.
So, if you have a loved one resisting assistive devices, help them make it theirs. Make it fun! Remind them of how these things can help them live a more normal life (but what is “normal,” anyway? The psychological question I’ve been asking myself since high school). Not being able to get places is debilitating. Riding in a chair or walking with a walker and then sitting down? One has so much more energy than trying to walk it by themselves!
And to all my friends and family: I will not feel “less than” simply because I use assistive devices. Tell me how cool it is decorated, and don’t stop your kids from climbing up on my walker. I’m okay with it, and I WILL let them go for a little ride. What do you mean it’s not fair that I’m their favorite because I have toys? Hehe.
JOY. It surpasses circumstances; it’s greater than happiness. Happiness is based on happenings, but joy comes straight from God. (Fruit of the Spirit, yo!)
I’ve been reflecting a lot on this in the past year. I’ve had so many reasons for joy; not just happiness. Though my grandpa died in January, I experienced joy knowing that he went to heaven and joined my grandma. Though I had many physical obstacles, I overcame them. I was confined to a wheelchair for a long time. But I became able to walk with a walker! I cried when, at my home church, I made it up the stairs to sing with the choir. What joy was brought to our lives when my healthy little daughter joined us at the beginning of September! She brings us more reason to smile every day.
One of the worst moments of my year—not all that many people know this—was the last time I went to the hospital at the beginning of October. We’d been keeping an eye on my rising fever, and when it hit 106, we called 911. By this time, I was septic: paralyzed in strength and my speech was slurred. Both Doug and I thought I was going to die. But God was not done with me yet. Over the next week in the hospital, I was not sad at the fact that I almost died and with my current state. Instead, I was joyful for the little things.
Doug and I had recently watched the movie “Miracles from Heaven.” In the movie, the mom, who tells the story, tells of the everyday miracles she realized she had witnessed over the whole trial. So I started keeping track of the miracles I saw every day. It really puts life into perspective. There are lists for each day I was in the hospital, and though I don’t make a list every day anymore, I am conscious of all the miracles around me. We are financially okay even though Doug is in his third year of med school, and I’m not working. Both sets of our parents are a huge help to us. There are two wonderful caretakers who come and help take care of me and Lydia when Doug is away. I am still walking with a walker, but my physical therapist, Judy, thinks I’ll be able to walk without it (as is my goal)! I AM getting stronger. I cannot take care of Lydia by myself yet, but I can do so much more with her than I could when she was more than half the weight she is now!
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance” (James 1:2-3). I have had MS a long time. I know that the joy in me wouldn’t be near what it is now if I had been free of this disease. I’m not saying it’s because of the MS my faith is where it is today; I’m just saying that even though I have MS, God has used it for good. I’ve got joy down in my heart, as the song says. Joy is greater than happiness.
P.S: I do have to share the HAPPY news that Lydia finally rolled over today! Yay!
I write. I see the wall of looming difficulties before me. I cower in a corner for years and obsess about some other hobby. But God reminded me as I read this, that I need to be waiting, too. Waiting and building and improving myself. Ugh. I hate waiting. (Think Inigo Montoya in the Princess Bride.)
I have no idea why I keep referencing The Hunger Games. Maybe because I’m really hungry. I always am. But I digress… This post is not about my hunger, nor is it about The Hunger Games, so if you’re here to read about Katniss Everdeen, the odds are not in your favor.
Now, that we’ve made it clear that this is not about The Hunger Games, you may be wondering what this post is about. Well, I’ll tell ya!
This post is about how I was dead set on self-publishing and making my book, The Sacred Scarred, available for pre-order tomorrow, but a still, small Voice – the One we Christians have to know how to listen to – told me to Wait.
I was not happy about it, to be honest. It didn’t make sense to me to wait. At least at first. But my relationship…
So, I was given an advanced reading copy of this book in exchange for an honest review. And honestly? I loved it! I love fairy tales, and I love Christian fiction. This was a combination! Just when you think you know what happens because the story is familiar, you don’t. And then when you are expecting to read the boring parts of the story you already know, you get so excited that you want it to just keep going and going! Joanna Alonzo has done some fantastic writing, and her rendition is absolutely beautiful. I HIGHLY recommend this book to anyone who likes to read, lol. Classic fairytale. Modern day. Christian fiction. And, like all good Christian fiction stories, you close the book with a lesson ringing in your head. Yeah, a lot of things keep making me think of this book after I read it. That means it was awesome!
I believe this book will be available for preorder on December 5, 2016. Here is a link to the website or author, Joanna Alonzo. Since reading this, Joanna and I have struck a friendship. How can I love someone’s work and not want to be their friend? So, check out this awesome book that my friend Joanna wrote!
I HAVEN’T EVEN WRITTEN ABOUT HER. All I’ve been writing lately are thank-you’s! I’m tired. I always feel worn out. I get frustrated. And the love that consumes me each day is crazy. Most of you know why.
Lydia Ruth Meyer was born on September 1, 2016. She weighed 6 pounds, 3.8 ounces, and was 20 inches long. Oh my goodness. I love her more each day! Man, by time she’s grown up, I won’t even know what to do with all that love! I say things that I used to think was dumb, like, “I can’t even.” But I can’t even finish that sentence because of all the emotions that overtake me before I find a reasonable word. My Facebook page is flooded with pictures of my new little daughter (it’s weird to say that I have a daughter! But I do!), because of so many family and friends living so far away. Lydia grows and changes every day!
To catch you up to date on health stuff. Lydia is incredibly healthy. For this we are all so very thankful! I, however, have not been up to par. Two weeks after Lydia was born, I started another relapse. I had been warned that one would likely come, but I thought it would have been right away. I went to see my OB for a checkup and was admitted to the hospital with a uterine infection. I was on the baby floor, though (because it was pregnancy related), so Lydia could come visit me! I stayed there about two days before coming home. Three weeks later, I was back in the hospital. I went in to the ER on Monday night, and was released Saturday. This one was bad. I had a bladder, kidney, and blood infection all at the same time. Needless to say, I was septic when I came in and was a good part of the week, too. Urine retention is common in people with MS. I just didn’t know it had been happening to me for months prior. That is why what started as a bladder infection, backed up to my kidneys, and got my blood, too. I am still on IV antibiotics three times a day, but thanks to home health, I can stay at home and do them myself. My 14 days will be up soon, though, and then I will be on oral meds. I’m getting catheterized four-ish times a day, too. I keep wanting to do it myself, but that’s hard, and I don’t have all the dexterity in my hands and fingers I once did. That will come, though. The doc said that my bladder is super stretched out, but by getting cathed daily, it will build that muscle again.
My mother stayed in Kentucky with us longer than she had planned on. She decided to stay longer after my relapse began to make sure we were okay. That’s actually one of the reasons I wanted her there first—because I thought a relapse would come right away. My MIL was coming the next week, so we put her on Lydia duty—that’s why she came! To meet Lydia and help out with her care! My mom had “Anna duty.” She knows what to do when I have a relapse and how to help. She had been taking care of me so long with this MS headache. Even when I relapsed in January for a while, she brought me home to Cottonwood until I was strong enough to go back home. She was not going to go back home until we had hired a caregiver to be with me and help take care of Lydia whenever Doug was gone.
The week with both moms was a little bit stressful, probably because there has never been so many people in our house AND so much was going on! But it was good. My mom did the cooking, because she loves cooking, and she’s good at it. And my MIL was oh-so-helpful with Lydia and other things around the house! It was nice not having the full night duty for almost a month! God’s hand was so much at work before my mom left, though. We inquired about getting a caregiver through a government agency, but it was going to take way too long. We decided to hire privately, and we got a name the next day! So, before the week was up, we had hired Karen and her adult daughter, Amanda, to trade off being caregivers for me and Lydia. It has been so awesome! I don’t feel guilty for taking a middle-of-the-day nap, because I know Lydia is being taken care of, and I know that my body has to heal in order for me to take better care of Lydia by myself one day.
Lydia Ruth is a strong and determined little girl. She has parts of both Doug and me in her, as well as traits from others in our families. As with all children, I’m sure, similarities toward one parent or the other will depend on whose family we’re visiting, and who this or that friend knows better. She is doing GREAT developmentally, and is even doing a few things sooner than the internet says she’s supposed to, which makes this mama smile big. She has to be able to see at all times. She hated the bassinet we’d gotten, because it had high sides, and she couldn’t see what was going on. So we put her in a crib at three weeks. Apparently I walked before I could crawl at 9 months, and I’m kind of expecting the same from Lydia. She loves when we hold her up so she can put weight on her legs and feet. When we put her on her belly for “tummy time,” she tries to scoot—almost crawl (if her body were strong enough)—as far as she can. She’s been trying to lift her head since day two, and now she looks around and takes everything in. We took her to church for the first time yesterday, and we put her in the “Sprouts” nursery for kids 0-24 months. I think she liked it! She didn’t sleep much when she was there, but boy, was she tuckered out when we got home! Lydia started smiling at things and at people about 5 weeks—the internet said that wouldn’t start until 6 weeks! One of our caregivers said about Lydia, “It’s like she’s frustrated with her baby body that can’t keep up with her!” My mama heart just beams with pride for my girl. Even at her two week visit, the doctor commented on how alert she was! Soon, it’ll be time for her 2 month visit—the one that includes shots. Lydia is generally a happy baby, and Doug and I couldn’t be more excited about her!
I am so overwhelmed with all of the prayers being said on my behalf, as well as the prayers for Doug and Lydia. I am so thankful for them, and for each person who is whispering them for us! When I was in the hospital this last time, I saw God’s hand at work every single day. As I go to bed at night, I have been identifying the ways the God is moving in my life – physically, mentally, and spiritually. I am so very thankful that I am still here, able to be a mommy to Lydia, and a wife to Doug. Thank you for all of the physical support, and prayer support that we’ve been receiving. We are blessed.
I ask a lot of questions. I read a lot of blogs and articles that are relevant to what I am interested in/looking for. I have joined the local “MOPS” group here in town. Doug and I only have one more week of our child birthing class, and they have gone into detail about how to care for a newborn. I have gone over my baby registry time and time again, sure I am missing something. I look at my friends’ first baby registries. I ask questions to other mommy friends of mine who have at least two children under 5 (because I refer to them as recent “seasoned” mommies). But. I still feel like I have no stinkin’ idea what to do to get ready for this baby!
Doug takes his Step One COMLEX exam (his board test to be taken THIS summer—there are three before he can become a licensed physician) on July 12. THEN we will begin “officially” preparing for baby. Many women have told me it’s called nesting, but Doug is gonna help me, too! (Which is why we’re waiting until after his test.)
So many people have asked what I still need. Then, I just direct them to my Target registry. I don’t really know, but that registry is a start! When I was born, my grandpa on my mom’s side built my parents a changing table, where the top can come off and it can be a regular dresser, so it can grow with baby. He was very handy with making wood things. Because I’m the oldest AND the first to have a baby, I inherited it. That dresser was in my bedroom the whole time I was in middle school and high school. I am excited that I have something my grandpa made, and excited that I get to use the changing table! We have friends from church who are done having kids, and have offered us things like a pak-n-play or even baby/toddler girl clothes. Doug and I plan on doing the exact same thing after we’re done with kids!
I have written this baby girl a few letters, and I have thought about her and included her in some of my quiet times with Jesus. I will share some pictures of my Bible art journaling to show you, and because I’m just so excited! I have been thinking about her a LOT. Even Doug has baby brain—he recently asked one of his friends, who got married the same summer as us—when they were jumping on the baby train, ha!
I did this one even before I knew the gender! Psalm 139
I LOVED doing this one! I can’t wait until my baby’s little hand grasps my finger! Psalme 127:3.
This picture was actually traced from a friend’s drawing, but it is a child, and I made her blonde, because I imagine my daughter with blonde hair when she is little (we will see!) Mark 10:14
Baby has been super healthy the whole pregnancy. As for me, my health is so much better than it was! I am doing PT, and I keep getting stronger! I’m basically learning how to walk correctly—AKA, re-learning how to walk with a cooperative left leg. And, as I said in one of the first posts published after my pregnancy was announced, I REALLY want to stick with what I learn in PT this time. For the first time, I actually have a reason bigger than myself—my child. I only have a few weeks left of PT, but I am doing so much better than I was before I started! And, my last post (published before this one) talked about me doing the things I love once again. This is as much for my health as it is for my sanity, even AFTER baby arrives!
Any advice from other seasoned mommies out there? Leave a comment below!
So, I’ve been sitting at home, back in Kentucky, since April. I have checked and double checked our baby registry. I have been Bible art journaling. Even though I don’t have a lot of energy to do so, I have tried to help out around the house as I can. And yesterday, I realized. Why am I not writing? Why am I not playing piano every day? These two activities are ones that I LOVE; have much finger dexterity in February or March, but I have it back now! Why is the child in my womb not hearing her mommy play music all the time? Why has my creative slow simply stopped?
So, I am re-discovering ANNA. I have made a commitment to write and play the piano, 30 minutes a day each. I have an author friend who was starting to write a book in October or November, and she published it a few weeks ago. Why do I drag my stinkin’ feet every time I close in on a goal of mine? Yeah, the first book I self-published, I went about it all wrong. But that doesn’t mean I should STOP. I had to cancel piano lessons in January, because of my relapse, which led me to live in Minnesota for a few months while everything was figured out health-wise. But I have heard interest of new students—why have I not been pursuing them super hard? Um, if I leave it all up to them, they won’t be taught!
In the next year, I plan to WRITE. I plan to self-publish more books that I think my audience will enjoy. Books that have been cooking in my head for YEARS, that simply need to be refined and rewritten. I didn’t even sleep very much last night, because my brain was remembering all the things I have wanted to do for so long. I have two months until baby comes. Then, even though I’ll be exhausted, I will still be at home. Even if my body can’t do everything I want it to when I want it to, I can WRITE. I can PLAY. So, what am I waiting for? I even got up at 6am this morning because I couldn’t wait. (I’ll probably crash in a few hours, but hey, I’m up now!)
I am not like other pregnant women. I have MS, and I am recovering from a few relapses that swiped me down. So, I have decisions to make. Always, planning ahead further than I used to, for sure. Where am I going today? Will I be by myself? Will there be any person or device to help me out if I need it? How much walking will I have to do? How exhausted will I be when I return? Will there still be things I need to do right away, like bring in the groceries? Being pregnant, I have realized how much like other pregnant women I am not. Will I be able to breastfeed? I have no idea. It depends on how my MS will treat me the rest of my pregnancy, and how it will treat me during and after delivery. When I go back on my MS medicine, I will not be able to breastfeed. After my little girl is born, how much energy will I have left to do things with her? Better make sure a Pak-n-Play is on the registry for when she gets big enough to move around. How will I be able to keep up with her, if I have troubles moving myself?
The unknowns shower upon me daily, but I don’t want to worry. Yes, I want more kids. But going off and on my MS medicine isn’t good, either. There are so many things that I am unable to do currently, that I may or may not be able to do after baby is born. I just won’t know until the time comes. Oh, I did as much research as I could about pregnancy before my husband and I even considered it. That super-far-ahead, planning in advance? That’s just part of life. But no two women are the same. Actually, most of my research suggested that by this time, my body would have overridden the MS and I shouldn’t be having so many problems. Women I’d talked to who had MS and had been pregnant told me they had never felt better than when they were carrying their child.
But I will sacrifice for my children, always. I treasure carrying this baby girl for all the same reasons other women treasure pregnancy. I am so excited to start feeling movement and to finally meet her! Yes, we are in med school. That is why I wanted to start a family now—in residency, I won’t see Doug much, and I know that right now is the time he can be around when I need him. When he starts his actual job after residency is over, I may not see much of him then, either. So I treasure this time. Us both being awake at the same time of the day so we can talk together or cook together.
In January, after my really bad relapse, I went up north to live with my parents. It killed me, being away from Doug and my friends. But I had a goal: get strong enough to come back to KY, because I AM going to have the baby there so I can be with Doug. My parents let me come back after I could take care of myself again and I was doing better. About a week after I’d been home, I had another relapse, set off by a UTI. And I caught it super early, especially compared to my relapse in January. I can still take care of myself, and it feels oh-so-good to be home! As I set up doctors’ appointments to help me get better now and for baby in the future, I keep taking little steps to get where I need to be. I am not very mobile on my own, but that will quickly change!
Matthew 6:25-34 has become a theme verse of mine over the years:
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?
28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
No, this does not take away my worry. I haven’t felt baby move yet—how well can I feel down there? Will I be able to feel her move before she really starts kicking? I’ve been told that even women who are paralyzed are able to deliver naturally, and that put some fears at rest. Also, probably like other new moms, I have no idea what I’ll need for baby. I’ve started a baby registry and all that, but in reality, I have no stinkin’ clue, nor do I have brand preferences (there’s a diaper pail? Different from a garbage? And HOW many different brands am I supposed to choose from?)
What is worry, anyway? Is it simply fear? Because yes, I’m terrified. But I’m also excited for this new chapter in life. My med-student husband (read: is learning the worst case scenario for everything possible) says he’ll be glad when I’m not pregnant. But I’m going to miss it. I’m only 21 weeks, so still 4 months to go. I say, on with the adventure! God will take care of me. He has proven it true over and over again.
When I was diagnosed with MS, I think every single neurologist I saw warned me about pregnancy. Mind you, I was 13 years old! Then, before Doug and I were married, my neuro talked through what pregnancy would be like with both of us. I would have to go off of the only MS medicine that has ever worked for me, let it get out of my system, and then try and get pregnant. Doug and I had planned carefully when we should move forth with a family, knowing that God held it all in his hands.
My last dose of Tysabri was taken in September. It would take three months for it to get out of my system, and it would be completely out by December. Mind you, my body has not been without medicine since 2006. But as I usually do, I push through all the MS-stuff that gets in my way. We didn’t really notice anything until the middle or the end of December. We found out weeks later that I had actually gotten pregnant by then! Yay!
I started a full-blown relapse about the beginning of January. Church ladies had been super helpful, but when my husband chose taking care of me above school, we knew something had to be done. Me, always in contact with my neuro, got on some steroids right away, but I was admitted into the hospital, where I could have constant care and not worry about silly falls. My parents were in Florida at a farmer’s conference thing, so the decision was made for me to go home with them the remaining of first trimester. Then, Doug could concentrate on school and not spend every spare moment worried about me, and I could have some more constant care by those who were there when the whole MS thing started.
Since I’ve been home, I got on another three-days of steroids, have actually seen my neuro at the Mayo Clinic, and saw my baby on an ultrasound! Each day I get stronger. You know, until the days I realized just how much I’d pushed myself the previous day. Then it’s back in a wheelchair and resting so that I can accidently push myself on another day. Tomorrow, I head back to the Mayo Clinic to see PT and OT. THEY will decide when I can head back, in a way. Can I take care of myself? Can I stand and not fall? Can I WALK and not fall?
It KILLS me to have to be here, waiting to get better. I’ve decided to DO something about it, though. I want to hold and to play with my baby when he or she is born. I have been putting off PT orders since I was diagnosed back in middle school. But now I have a reason to want to keep up doing what I still can. Daily stretching? Daily exercise? I‘ve been down this road before. What I do today may not be noticed by my body for days or even weeks. I may wear myself out too far and knock me down for a couple days. But Baby M.
Thank you all for the prayers that have been sent up on my behalf. Keep them coming! MS is nasty, and all my frustration toward the situation is aimed at that. But I AM getting better! Even on weak days, I notice things I can do that I hadn’t been able to do before. Stay well, my friends! I will write again sooner than later! ❤