Category Archives: Multiple Sclerosis

Deafness, God speaks, Multiple Sclerosis

Wasting away

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So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:17-18 ESV)

Don’t I know it? I am 36 years young, yet daily I struggle with aches and pains and fatigue and several other issues more commonly associated with aging. I have my Kindle set with larger, high contrast fonts, and in my kitchen I have a special phone that offers live captioning for all my calls. I don’t use a walking cane on a regular basis, but that reality is not far off.

This is why I cling to such promises. This life here, this failing body of mine, is temporary. What really lasts, and what really matters, is what’s going on inside my heart. As of this moment, this heart is strong. Resilient, full of hope. I believe much of that strength is a result of the trials I have been through. So rather than wallow in regret or sadness, I choose today to smile and thank God for carrying me through. May I forever remain in the palm of his hand.

Deafness, Holidailies 2014, Holidays, Multiple Sclerosis

Holidailies 2014

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I’m a day late for this blog project (as I was with the thankfulness challenge, but I figure a day late is better than never, and who’s counting anyway?). I heard about Holidailies from a fellow WordPress blogger, Wendi over at Sudden Silence. I thought it sounded like a fun way to be “held accountable” to writing. Holidailies is basically a portal for blog entries written on mostly daily basis from December 1 to January 1. The posts don’t have to be about the holidays, though chances are most of them will be. Given the obsessiveness our society has evolved into having with these winter-time holidays.

That sounded like a segue into a rant about Christmas commercialism. I assure you, it was not. I’m not much of a ranter when it comes to blogging.

Oh! I almost forgot. I’m supposed to introduce myself for those who are new here. There is some info on my About page, but I’ll elaborate. I am 36, and I have multiple sclerosis. I was diagnosed in 2009 while I was pregnant with my daughter. It causes problems, which I talk about here some, but you’ll see that in no way does MS have me. II lost my hearing in the matter of one short week in August 2013 due to autoimmune inner ear disease, but I have since been implanted with a cochlear implant in my right ear. MS struck hard in September 2013 and took some of my vision. So being deaf, visually impaired, and easily fatigued from the MS all adds up to an unemployable me. Which gives me plenty of time to write, something I have always loved to do.

I do welcome your comments here on my blog, whether it’s to ask me a question or just to say hi. Welcome, welcome, and I hope you are having a wonderful holiday season!!

~Mindy

Food, Kids, Multiple Sclerosis, Photos

Thankful challenge day 6

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Today I am thankful for potlucks (or as I like to call them now that I am visually impaired, “mystery dinners”)! Luke’s soccer team held a potluck for the families for a last hoorah and a chance to award everyone their trophies. Luke had a great season and learned a lot about teamwork and focus. We are so proud. We drove the kids straight to Grandma’s house from the potluck, where they will be staying for the weekend. That leads me to another something I am thankful for, but I will save that for tomorrow. G’night folks!

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Multiple Sclerosis, Thankfulness Challenge

Thankful challenge, day 5

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Today I am thankful that I am still walking unassisted. As I have mentioned on the blog, I have MS. I was diagnosed in October of 2009, just one month shy of my daughter’s birth. Since then relapses have come and gone, and some symptoms still remain such as balance problems and fatigue, but overall I am far better than I had feared I would be. I was afraid I would be completely disabled within a couple years, but that doesn’t even scare me so much anymore. I have wonderful support from my husband, children, family, friends, and in this day and age we have great resources and tools to aid disabled people. Not walking no longer feels like the end of the world.

So today… today I am still able to walk my kids to the bus stop. I am still able to move freely around the house. And I treasure every day this is true.

God speaks, Kids, Multiple Sclerosis

Morning snippet

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Psalm 38:15 “But for you, O Lord, do I wait; it is you, O Lord my God, who will answer.”

Oh boy, do I wait.

I hate waiting, but yet I also hate to be rushed. I suppose I should give God the same courtesy I would want. I won’t try to rush Him. He will heal my eyes, in His own perfect time.

Until then, I must relish the good and take joy in what I have now. I am loving spending time with my kids this summer. We have taken walks together, played at the playground, gone camping, ate ice cream, built forts, danced around the living room. They return to school in a little over a week, and things will change all over again. I’m not sure I’m ready, but it’s okay because we take things one day at a time around here. And anything that can be done in a day can’t be that overwhelming, right?

 

 

God speaks, Miracles do happen, Multiple Sclerosis

Healing the blind

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Matthew 9:27-31: “And as Jesus passed on from there, two blind men followed him, crying aloud, ‘Have mercy on us, Son of David.’ When he entered the house, the blind men came to him, and Jesus said to them, ‘Do you believe that I am able to do this?’ They said to him, ‘Yes, Lord.’ Then he touched their eyes, saying, ‘According to your faith be it done to you.’ And their eyes were opened. And Jesus sternly warned them, ‘See that no one knows about it.’ But they went away and spread his fame through all that district.”

I read a lot of these stories in the Bible, the stories of Jesus or his disciples healing the sick. And I have to be honest, it especially pains me to read the stories of the blind being healed. In some ways it’s jealousy, that that type of healing hasn’t happened for me (yet??), but in other ways it serves as a good reminder that Jesus CAN heal me. Believe me, I know it’s entirely possible (if not more likely) that complete healing may not come until I am ushered through the pearly gates. But that doesn’t seem to provide much reassurance. I have moments of peace about my crummy vision, and even my hearing loss, but they are just that: Moments. Some last longer than others, and I am thankful for those. Those are the times I am either really focused on connecting with God, or focused on the people I am with. Sometimes it’s both.

Today I am kind of in the middle. A little melancholy, a little at peace, but very thankful to be alive. Someday my day will come, and my eyes will be opened. Here’s to the hope that it will come sooner rather than later.

Cochlear implant, Decluttering, Kids, Multiple Sclerosis

Grandma Deb

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I had a heck of a week last week. All good. My mom was visiting from Oklahoma, and it was wonderful to spend time with her. On normal days we Skype, so it was refreshing to have real interaction. She came with me to my audiologist appointment, and then we went shopping and had lunch afterwards. That was Monday, when the kids are at daycare. We had the kids home the rest of the week, which changed everything. The kids had a great time with Grandma Deb, and she took them to Jumpin’ Jax (a local bounce-house playground type thing). She also got to see Luke play baseball, and we did some shopping for yarn so I can make afghans for the kids. She helped me sort through Natalie’s clothes for the items that no longer fit, and then took us to Goodwill to drop off a whole trunk load of stuff we no longer wanted.

So while we got a lot of work done around the house, we also had a lot of fun as well. We never did get to decluttering that damn hall closet. Oh well. I’ll get it handled eventually.

I have always been close with my mom, so it makes me happy to see the kids connecting with her so well. They each have a lot of her character in them, and it’s even more apparent to me when she’s around. Natalie has her artistic streak, loving drawing, coloring, and dancing; Luke has her creative problem solving abilities.

When we first planned this visit we expected that I would need more help, but I think we were both surprised at how well I was doing, especially with the kids. I was able to show Mom how well I can hear the kids now that I’m getting used to the cochlear implant, and also how well the kids were adjusting to it. I will always be making adjustments, but we’re headed in the right direction.

By the end of the week, I was pretty fatigued. Partly because of all the work we did, but partly because I was due for my monthly Tysabri infusion. It’s the medicine I take to manage and hopefully slow down the progression of multiple sclerosis. I noticed a few months back that I get more and more tired leading up to the next infusion. So, three weeks of fairly normal energy levels, and one week of rapidly progressing fatigue. It’s good that I can recognize this, so I’m not feeling hopelessly frustrated to be so doggone tired for no good reason. It’s unfortunate that Mom happened to be here on that fourth week of fatigue, but in a way I’m grateful, because she was happy to help and quick to recognize when I needed to rest. And, being my mother, she is not shy about telling me to take a nap when I need it.

All in all, it was a great week. Summer is flying by, and the kids will be back to school in no time. We plan to continue to enjoy every moment we are given, and thank God for all the blessings. Carpe diem!

Multiple Sclerosis

Face plant

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My mom has come to visit! My house was already a frenzy, with grandparents returning my kids from the fair and a friend visiting to chat. When my mom walked through the doorway I was so excited to see her I rushed over to hug her and totally lost (misplaced) my balance and made a good face plant on the hardwood floor with my teeth. I was so happy, I was crying and laughing all while holding my mouth to check for blood. I think somewhere in the middle of all that I had knocked down my daughter too, so while I was lying face-down on the floor, I was looking and reaching over to make sure she was okay. She was fine. I was fine. The whole thing was hilarious.

Damn MS. I really need to remember my body isn’t cut out for running..

Multiple Sclerosis

Mourning independence lost

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I think I’m finally starting to let go of my “need” for independence. I’ve always been a do-er, a person who could take care of things herself, and had a resistance to asking for help.

That doesn’t work for me anymore.

I hate, hate, hate to feel like I’m a burden to anyone, and I hate having to rely on others. Last fall, I was a burden, but the people who bore that burden loved me just the same and carried it lightly. For that I am grateful.

I have come a long way since then, and have returned to some sense of normalcy, where I feel like I am contributing something of value to my family. I’m feeling useful again, and it’s nice. However, there are still things I cannot do no matter how hard I try.

I cannot drive a car. This means I can’t go get the groceries for the family, or drive the kids to and from school, or to friends’ houses for playdates. And that drives me crazy some days. That there is no option. It just is what it is.

How do you deal with something you cannot change? You could fight it, but what good would that do? No amount of fighting will change my vision. It is 100% out of my control. And I suppose I could cry about it, but I’ve shed so many tears over the past year, I think I’ve run out for awhile (Not to mention, crying doesn’t change the facts either).

So what option is left? Acceptance. Ah, now we’re getting somewhere. But what does acceptance of this low vision look like? I think it is this: you do what you can, and delegate the rest. So that is what I’m learning, to delegate. What I’m learning through the process is that people like to feel needed, and are more than willing to help. They seem to know I’m not just a lazy freeloader (most of the time, anyway) and are eager to help. It seems the bonus out of helping is that they get to spend time with me, and our friendships grow as a result. That sounds a little selfish when I say it like that, but truly, people like me! I’m funny! And, I will buy you coffee. And chocolate. And fill up your tank with gas.

That is it. Accept what is real and true with humor and grace. Laugh a little, be kind to others, and for the love of Nemo, just keep swimming…

 

God speaks, Miracles do happen, Multiple Sclerosis

Psalms and asides

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Oh, how I love the Psalms. I like how my thoughts follow interject as I read them. Today I read Psalm 13. I’ll tell you how it went, but for reference I need to point out that I have severe nerve damage in my optic nerves, and struggle with partial vision loss. The doctors at Mayo Clinic said it would not get better, yet I have shown slight improvements ever since. It’s been a journey within a journey. So here we go…

“How long, O Lord? (Yes, I’m impatient at times)
Will you forget me forever? (No, no, no.)
How long will you hide your face from me? (Okay, I’m sorry, I know you are here. You are not hiding from me)
How long must I take counsel in my soul and have sorrow in my heart all the day? (Do you get tired of the same old pleading, every single day?)
How long shall my enemy be exalted over me? (He will not win this battle)

Consider and answer me, O Lord my God;
Light up my eyes, (YES! PLEASE!) lest I sleep the sleep of death, (Ok,I suppose death would be worse)
Lest my enemy say, “I have prevailed over him,” (Negative.)
Lest my foes rejoice because I am shaken. (Shaken, not stirred. I’m standing firm in the knowledge that Jesus is fighting for me and He – WE – will prevail.)

But I have trusted in your steadfast love; (Oh, I have, over and over and over)
My heart shall rejoice in your salvation. (I’ll keep doing this too)
I will sing to the Lord, (Deaf ears don’t lend well to this, but I don’t think he minds, do you?) 
because he has dealt bountifully with me.”

Bountifully. What exactly does that mean? According to the dictionary, bountiful means abundant: liberal in bestowing gifts, favors, or bounties; munificent; generous. God is a generous God, liberal in bestowing gifts. Generous as in He wants to give us gifts, good things, and lots of them!

Here is where my doubt lies – does God want to heal my vision? He has given me so much, and I am thankful for all of it. I am truly happy and know that I am blessed. That fact is not lost on me. However, deep in my heart I guess I still want to pick and choose the gifts. I’m like an ungrateful child at Christmas, who didn’t get that Cabbage Patch Doll she was so hoping for. That girl, sitting on the floor amongst scads of toys and gifts, lamenting that there is no doll. This woman, sitting here in a comfortable home, with her beautiful children and husband, wondering when her vision will be restored. IF it will be restored.

Don’t get me wrong, I am thankful. And I know I am human and that God has plenty of grace for me. Grace to cover my ungrateful tendencies. I don’t know what God is doing with my vision. I know He keeps me in the dark on that point for a good reason. He wants me to trust Him.

Here’s the thing: I have a hard time with grace. I have a hard time accepting gifts. I have a hard time believing that I deserve. But you know what? I don’t. None of us do. That’s what grace is all about – the free and unmerited favor of God. I don’t know if my eyes will be completely healed this side of heaven or not, but I know God wants to give me good things. And who knows? Maybe that’s one of them. I did get that Cabbage Patch Doll, after all.