Category Archives: Multiple Sclerosis

Grandma Deb

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!

Face plant

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..

Mourning independence lost

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…


Psalms and asides

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.


I went to see my neuro-ophthalmologist (I finally mastered spelling that word) yesterday for my three-month follow-up visit. Wonderful news – as I suspected, the tests show that my vision has improved. It’s a small improvement, but it’s movement in the right direction, and that thrills me. We asked Dr. Kaufman what he thought about me driving again, if only for short distances. I feel close to comfortable getting back behind the wheel, but I trust his opinion, and was anxious to hear what he had to say. I was pleased with his response. For one, he didn’t laugh at me or show any indication that he thought the idea was absurd. However, he thought it was too soon for me to be safely behind the wheel. He did, however, suggest we talk again in another 2-3 months and see how I’m doing then. He believes my vision will continue to improve, and thinks eventually I would be able to look at driving in a wide open lot, with Mike’s supervision. He said my vision won’t ever get back to normal, but I didn’t really expect that anyway. I’m just happy that it’s better than it was. The doctor at the Mayo Clinic last January said that it would not get better. Since then, I have been praying and believing that God knows better, and that He is healing my eyes. He invented them in the first place, so I know He can do it. And look! He IS!!

Stop signs

I love my family, and I love having my kids and husband around. I do. I really do. But it’s Monday again, and after they walked out the door and I sat down with my morning cup of coffee, I was almost in tears. It’s hard to explain, but it’s as if a sense of calm is rising up in me, sensing that it has permission to come out. And while I have lots on my to-do list this week, in addition to doctor’s appointments, I think today I’m going to let that Calm out today, and stay, uninhibited.

I’m extremely exhausted. The fatigue kind of exhaustion, which I hadn’t felt in awhile. It is not a welcome feeling. It comes with a discomfort, but I think that’s all part of the design. The discomfort pokes and prods until you give in and say, “Okay, let’s stop here. Time to rest.” So this morning I am slamming on the brakes. Yet again.

Subtle changes

I just have to publicize this. I’ve been secretly becoming aware that my eyesight is getting better. The changes are subtle but they are becoming more frequent. I’m finding the mouse arrow faster. When I was riding in the car on the way to Dr. Hong’s office to get my stitches out, the scenery just seemed different. Clearer, like I was seeing things better. I still have a slight blind spot, but things do seem to be improving. Then today, I noticed something in the shower. This may be TMI, but My hair falls out a lot, and when it is still stuck to me after I turn the water off, I remove it and collect it on a certain spot on the shower wall, to wipe off after I get my towel. Since the damage to my optic nerves, I haven’t been able to actually see the strands of hair, but today I was! So either my hair is getting darker (not likely) or my eyes truly are better!

Healing of my eyes has been one of my most desperate prayer requests, and I am stoked to see God answering it! Praise God!

Psalm 30:2 “LORD my God, I called to you for help, and you healed me.” (NIV)