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 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.
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! ❤
He looked straight into my eyes. Even though there was much motion going on around us, he never broke eye contact. All day I could feel him looking straight into my eyes. I would always look to him, as well. When I was distressed about what this MS will do to me in the future, he cupped my face in his hands. “I will help you,” he told me.
“Will you heal me?” I asked.
“I will be with you, and I will help you through everything. Trust me?” he asked.
“Yes, Lord,” I answered.
Time passes. The MS gets better, then it gets worse. Then it gets better again. Even though I worry, I hear the echo of Jesus’ whisper. “I’ve got this. Don’t worry.” Even though I catch myself worrying at times, my heart beats with my reply, “I trust you, God.”
More time passes. I graduate college. I get married. New worries arise. Again, I look up into the ever-loving eyes of my Savior. As before, there is motion in the background, but I’m not looking anywhere. Suddenly, Jesus’ face turns into Doug’s.
“I will be with you, and I will help you through it all,” Doug told me. And I know it’s true. Because I trust my Lord, and he’s the one who sent my husband to me.
“What if the MS does something terrible to me in the future? How am I going to be able to handle children someday?” My frantic voice raises. “I can’t even handle myself!”
Jesus talks, and it’s Doug’s voice that I hear. “Read this verse, Matthew 6:34.”
So I do. “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
Doug looks at me with the compassion in his eyes that I know comes from our Lord. “Don’t worry about tomorrow, Anna. There are a million and one tomorrows until you even have to think about taking care of kids. By time that comes, you won’t even be worrying about it! You will just do.”
I nod my head as I pick up my journal, so that Doug can’t hear my conversation with God. I confess to Him my worries. I tell Him my fears. And then I give everything to Him. I even thanked Him for the MS, because I have to rely on God for my everything.
“My power is made perfect in weakness,” God tells me through his word. Oh, how I know it’s true! When I am weak, my God is strong. I asked for help taking care of my body, and he sent me a doctor-husband who is as sold out for God as I am. When my body is weak, God shows his strength through me. How else could I write such words tonight? 😉
Miscommunication. I have been learning a TON about this in many different areas in my life. It’s just better to get rid of it. Ask for prayer when you need prayer, and share the reasons/circumstances if necessary. Ask for help (something God’s been teaching me lots since 2011, I think.) Don’t just talk louder than the other person when you don’t like what they are saying. Tell them you don’t like all that negativity or (insert whatever here), and why.
The miscommunication between my mind and my body is super-duper annoying. Sometimes, I feel that if my body could keep up with my brain, I’d have to be a super-energetic child with no “off” switch. Other times, my body feels like it’s an old lady that should be in a nursing home but is really too stubborn for her own good. When my body keeps up with my brain, it can last like, and hour, tops. The miscommunication is not only the maturity or energy of either body or brain. (I’m told that I have a “childlike” spirit….and yet, an “old soul.” Figure that out.) My body doesn’t tell my brain that it’s getting tired until after the fact. I did physical therapy for, like, a month or two—twice a week! It was awesome. Until we realized that the PT was doing more harm than good. I AM getting stronger, but I’m having a harder time than EVER with the body/brain communication thing. Like last Monday. The air wasn’t on in our house, and when I got up to walk around and do things, I was real weak. Well, looking at the thermostat, it said 78 degrees. In the HOUSE! (Heat is an energy-sucker, too.) So I turned the air on, and chillaxed for a while until I felt I had enough energy to do more chores. Bleh.
I have also been working on the miscommunication that comes with two very different people being married and living together. I don’t always tell Doug when I need help, or would like him to do something FOR me. I would wear myself out until he notices. (But, I AM getting better at telling him when I shouldn’t be doing things—it’s that bodily communication verbalizing and the whole pride thing of asking for help that I’ve been learning since I started this blog.) And now, when Doug notices something needs to be cleaned or laundry needs to be done, he tells me instead of leaving the laundry room door open or setting out the broom (that I would put away because I thought he left it out after using it). See? We’re getting better at that. We’re also getting better at telling each other our expectations of events or the rest of the day. Communication is really cool. I think what has also helped Doug and I be overcoming this stuff so quick is that we were long distance until we got married. And I’m still not afraid to tell him my thoughts.
Doug and I have both (separately) been doing this Bible study through the YouVersion Bible App called “Lord, Hear Our Cry.” It is all about prayer. I have been realizing that there’s a lot of miscommunication on my part when it comes to prayer. It’s okay to ask for things, but don’t get discouraged! Sometimes, when there is no answer, I assume it’s a “no.” Sometimes, that “no” may just be a “not now.” So don’t lose hope when God doesn’t answer us right away! It’s not miscommunication, really. It’s not that we’re not communicating. Maybe it’s because we’re not listening (receiving communication). Or the answer doesn’t come as soon as we want it to. That is our fault. God hasn’t answered me about healing me of MS. Maybe he won’t ever heal me or any of my family members who have also been diagnosed with this icky disease. But it doesn’t mean I’ll stop asking. This is one area that I feel like I know the least about. Why am I writing about it? Probably because God wants to tell me or one of you readers something.
Then Jesus told his disciples a parable to show them that they should always pray and not give up. 2 He said: “In a certain town there was a judge who neither feared God nor cared what people thought. 3 And there was a widow in that town who kept coming to him with the plea, ‘Grant me justice against my adversary.’ 4 “For some time he refused. But finally he said to himself, ‘Even though I don’t fear God or care what people think, 5 yet because this widow keeps bothering me, I will see that she gets justice, so that she won’t eventually come and attack me!’” 6 And the Lord said, “Listen to what the unjust judge says. 7 And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? 8 I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?” (Luke 18:1-8, emphasis mine)
Now. Going back to previous topics in this post, don’t be a nagging spouse. But maybe if you tell your spouse something a few times, it’s okay. I feel like my body has been trying to learn the same lesson f-o-r-e-v-e-r. But persistence isn’t bad. Okay, like many of my posts, I have plunged into a topic and have since left it behind. Maybe it’s been too long since I’ve blogged. Maybe I’m having more miscommunication troubles with the world than I even thought. But, maybe not.
Be blessed, everyone!
Anna E. Meyer
Where in your life do you see miscommunication? What can you do about it?
It tiptoes into peripheral sight, And stays to take away the light. The darkness makes its home there; Until you realize you were unaware.
But I didn’t notice this until I found myself climbing up the hill! The flat and happy ground was green, But this hill is dry and brown and mean.
Depression sneaks up to the unsuspecting; It makes one think they are the one rejecting.
It causes feelings that don’t belong, It places monotone where there once was song. This hemeola of emotions, this fighting of sorts Leads to modulation that’s unwelcome, of course!
One day I’ll be down, and the next snap out of it. It’s like this other unpredictable disease a bit. Depression is a symptom of MS, as well. Which is just my luck– but I won’t dwell!
If it gets bad enough I’ll go see my doc. But coming out myself wouldn’t be a shock. Just like everything else I’ve been given, I’m too busy to notice it–I’m livin’!
So before you go and hand me your pity, Allow me to give you an answer that’s wity: I may not be from Mississippi, have a master’s degree or be a medical specialist, But I AM Mega Smart, Mighty Sarcastic, and Marvelously Sweet. Just ask my sistermom husband. (We still qualify as “newlyweds.”)
There is a time for everything, and a season for every activity under the heavens: a time to be born and a time to die, a time to plant and a time to uproot, a time to weep and a time to laugh, a time to mourn and a time to dance, a time to scatter stones and a time to gather them, a time to refrain, and a time to EMBRACE. Ecclesiastes 1:1-2, 4-5
All semester, my counselor had been asking me what it would be like if I embraced my MS. And I thought I had, but then I knew I hadn’t. It’s been a wrestling match for years and years (seven, to be precise). I want it to be invisible again, like before I would be struggling to walk in warm weather and it was still easy to forget about. I want God to come down and heal me of it, so that all can hear my really cool testimony and be like, “God’s awesome!” I do want God to be glorified through it, but I don’t want it anymore. Then, this morning, I read this really awesome email (that descriptor doesn’t do it justice, though) from my friend Amy. She told me that her favorite memory of me was one where she saw me struggling to walk, but that same day, she saw me praising Jesus with everything I had. She told me how obvious my love for the Lord was, even though I was dealing with MS. That was a year ago. Amy is not the first one to tell me how God has used me to touch her life, but this time? I think it is time to embrace my MS. For real, this time.
I am confident, Anna Olson, that God’s been working in you, that he’s been working through you in the lives of others, and that he’s using your struggles for good. . . . So, Anna Olson, don’t be shy. Continue to be bold, to trust God, because you have every reason to do so.
So, this brace that I wear and am asked by a ton of people about? The one that I always feel embarrassed by and hate answering all the questions about? I am not ashamed. I will wear it because I need it, and answer questions about it patiently. Sure, this MS is frustrating at times, but I won’t let it get me down! It is time to embrace this MS; embrace that it is a part of me; and embrace all the good that God is doing through it (especially cuz anytime I get a front row seat to see God’s hand at work, I am in awe or him all over again)!
The Lord your God is with you, he is mighty to save. He will quiet you with his love, he will rejoice over you with singing. Zephaniah 3:17
I was diagnosed with MS when I was thirteen years old. It will NEVER define me. People who know me don’t see my limp anymore, unless it’s worse than usual. People who know I have MS forget because I don’t let it get me down and I am positive a lot of the time. I don’t let people see in on the secret that every single day has its own struggle. I cover up the knowledge that I’m getting a teensy bit worse with a smile. If I could, I myself would forget about the disease, as well. But it becomes more difficult to manage when I pretend it’s not there. If I tuck the disease away for a time, its shadow gets bigger and bigger until I can’t handle it by myself anymore. And then who besides God do I tell? Will anybody hear me? Will anybody help me? Who can do something about it? I do not want to be treated differently.
Anna, I hear. You’re not being selfish by letting others know your struggles. You find joy in comforting others who are struggling. Let them find joy in comforting you. Asking others to pray for you is not selfish, either. It’s what I want you to do.
At the words I am reminded of my hope and the reason for my positivity: Jesus. No, I can’t physically keep up with others. I let them encourage me or give me a piggy-back ride. However, I can spiritually run alongside someone else. I can encourage them and lead them to one who is stronger than me who won’t hesitate to lift them into his arms to carry them: Jesus.
I worry because I don’t know what each day will bring, especially regarding the MS. But Jesus whispers, Pass it over here to me. When I do, it does not weigh me down any longer. I get frustrated because I have more responsibility than I want; have had this responsibility for too long. But Anna, I hear, it doesn’t have to be such a big responsibility if you keep letting me help. So I pass that over to my Lord, as well. There are people who care about you, Anna. Let them in.
So I make a list, because I’m good at those. In my list, I give reasons why I’m frustrated. I share that even though people don’t notice my limp anymore, I do, because it’s hard walking with a limp. I share how quickly weakness sets in and what that sometimes affects. I share my frustration of the symptoms I deal with that nobody sees, the ones I don’t like to talk about because nobody understands them. I make another list, a list of lies that I’ve been believing, lies that transform into stress that in turn affects my symptoms. I make a final list, a list of ways that could help people experience and try to understand. But who would want to make themselves physically tired and then walk around with a weight around their left ankle, just to feel how heavy it gets by the end of the day? Who would want to wear gloves doing everyday activities just to experience my daily struggles?
I am reminded once again of the fire that burns inside now, the fires of my passion and love for my savior and redeemer, Jesus Christ. I’ve struggled, too, I hear. And you have me. No struggle shall overtake you, for I am bigger than it all. And I PROMISE that we will get through this—together.
Jesus Christ is my reason for everything. He is my shield and my refuge. He is my strength, and he is my smile.
“Always” by Passion
My foes are many
They rise against me
But I will hold my ground
I will not fear the war
I will not fear the storm
My help is on the way
My help is on the way
Oh, my God
He will not delay
My refuge and strength always
I will not fear
His promise is true
My God will come through always
Trouble surrounds me
My soul will rest in You
I will not fear the war
I will not fear the storm
My help is on the way
My help is on the way