All posts by Little M.S. Runner

Forty-something, married with two kids and two dogs. Trying hard to live every day to the fullest with multiple sclerosis, impaired vision, and deafness. Couldn't make it without my Savior, Jesus Christ.
Food, Grown-up Stuff

New Things

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Today may as well be recorded in the history books. Yes, it’s just your regular old Wednesday, but it was a day of new things for me!

1) A new pair of glasses. I’m so excited about these glasses. I had my eyes checked a couple weeks ago, and ordered new glasses then. They came in the day of my CI surgery, so I had to wait until the swelling went down before I picked them up. There are a few reasons I’m excited about these glasses. The biggest reason is that though they don’t correct the clouds, or you could call them blind spots, in my line of vision, they do make everything I DO see much clearer. This makes life a lot less frustrating for me. When you can only see a portion of what you are looking at, you would at least like that to not be so fuzzy. And the other reason I love these new glasses is because the arms are covered in paisley. I HEART paisley. I have a paisley key chain, paisley purses, paisley shirts… I even have paisley tattooed onto my upper arm. Oh, and I can’t forget about the paisley up in the corner of my blog, which happens to be the image identical to the stickers on my CI.

2) For the first time ever, I grilled. We purchased brats for dinner, and Mike showed me how to use the grill so I could make the food while he mowed the lawn. In all my years on earth, I have never had the desire to use the grill. And so, I never learned how. As it turns out, it’s ridiculous easy. And goes very well with a cold beer, I might add.

3) I wrote yesterday about becoming a faithful flosser. A friend commented on my blog post via Facebook (so the discussion won’t show here) and she was describing in somewhat graphic detail why she uses mouthwash. I’ll just say it basically involved ingesting bacteria, which is enough to motivate me to try it. Ew. So, today we bought a bottle of mouthwash and tonight I tried it. Dang, that stuff stings! They say to swish for 30 seconds but I don’t think I made it to 15 before I had to spit it out. Still, that’s better than none. It’s still one step closer to being a responsible adult, so I’m not beating myself up about the timing. I’m just proud I made that step.

So that’s enough grown-up activities for the day. Tomorrow I think I’ll stay in my pajamas and eat ice cream for breakfast!

Uncategorized

Being a grown-up

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(I am blogging from my bed, which means I’m Swype-typing on my phone, so there’s my disclaimer, there may be a typo or two.)

That’s a long, unnecessary disclaimer for what I’m about to say. Basically I am going to toot my own horn. Or embarrass myself, depending on which way you look at it.

Ahem… I am here to announce that I am now a faithful flosser! That’s every night, folks, I have been flossing my teeth. And I’ve been keeping it up since my last visit to the dentist, which I think was in early April. It has become a new habit for me, something I just do, even if I don’t feel like doing it (which is most days). No need to talk myself into it anymore;  I just do it because it’s part off my nightly ritual.

And can you believe it only took me 37 years to get here?

Deafness, Hearing Loss, Kids

Lame Recap of a Wonderful Weekend

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We’ve had a lot going on around here. This weekend was busy, and leaves me longing for Monday, when I can truly rest. Saturday was the Walk4Hearing, which was fantastic. Ir was raining a little, but it was tolerable. The temperature was nice for walking. I didn’t walk, of course, because I was still in surgery recovery mode. Instead, I borrowed a wheelchair and my friends were eager to push me along the way. Luke came with me, and it was a lot of fun to see how excited he was to be there to support his mom. He was amazed at how many kids were there, and how many had hearing aids or cochlear implants. Who knew hearing loss affected so many young people?

Then there is today, Sunday, the 8th anniversary of my son’s birth. Yes, it was his birthday. A day to celebrate, for sure. On these birthdays I think a lot of our seven year wrestle with infertility, and thank God for eventually healing me and for giving us two wonderful children. Luke was really excited to turn 8, and he talked about all the fun things he has experienced in his 8 years here on earth. It’s been a fun ride, that’s for sure. I am proud of the boy he has become, and look forward to the man he grows up to be.

I really do have more to say on that subject, as well as others that have been rolling around in my head, but it’s late, I’m tired, and I don’t do well with that combination. My mind works best in the morning, so that is when I will return. Whether it’s tomorrow morning or the next, I cannot say, but I do promise to be back.

Cochlear implant, Coffee, Housekeeping, Kids

Field trips, coffee, surgery…

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Well, I never did blog about those cookies, did I? Maybe next time. I have a lot on my mind this week.

I accompanied my son and his class on a field trip to an indoor aquarium. We rode a charter bus, and Luke discovered that the on-board restroom is not as glamorous as it sounds. The aquarium was located in a large shopping mall, and since our bus let us off at the wrong entrance, we were able to scurry past all the wonderful-looking shops on our way. Luke seemed to enjoy the aquarium. There were a lot of neat things to see – jellyfish, stingrays, turtles, etc – and Luke enjoyed it all, but he made a point to tell me that his favorite part of the day was spending it with me. My favorite was hanging out with him too, and that just melts my heart to hear it from him. Oh, but my second favorite part was finding a Tim Horton’s right there inside the mall! I had not had time to make coffee that morning, so that was the icing on the cake for me 🙂

That was Monday, and I can’t remember what’s happened since. Mostly soccer games, doing laundry, walking to the bus stop, and a little eating and sleeping in between. I’ve been feeling like I have to stay “caught up” because I’m going to be out of commission for a bit. Why, you ask? Because tomorrow I am having surgery to get my 2nd cochlear implant installed, that’s why! And this time I’m pretty sure it’s for real. The UTI that prevented me from having surgery last month is gone, and I had the lab test done last week to be sure. So today is a day of making sure the floors are clean and the laundry is caught up and then I’ll be packing for tomorrow.

Wish me luck, pray for me, send soft cookies, whatever! I’ll be back in due time.

Food

Okay, now let’s talk about food.

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I have found that one of the great things about being “stuck” at home all day, is that sometimes you are forced to be creative with your lunch options. That is, unless you are okay living on Ramen noodles lunches every day. Which I am not.

Who loves leftovers? This girl, right here. Sometimes it is okay to just reheat them – I’ll reheat soup in the microwave, but the broiler is the way to go for leftover pizza – but other times it’s better to do some creative repurposing. We grilled steak the other night, and ate it with a bleu cheese & bacon salad. So I decided to fry up that leftover steak (just to heat and add some butter flavor), slice it up into cubes, and throw it in with the salad. Grilled steak and bleu cheese salad – it’s definitely hitting the spot!

We also had a wad of leftover spaghetti. Now, I like to keep the noodles and sauce separate when I pack up the leftovers. It gives me more options for using it up. Rather than go with the standard spaghetti dish, I melted some butter and cream cheese (we always seem to eat all the bagels before we use up the cream cheese), mixed in some parmesan cheese, and then tossed that mixture in with the spaghetti noodles, threw it in a baking dish and layered it with the spaghetti sauce and some mozzarella cheese. Baked for about 40 minutes, and voila! We had baked spaghetti. The kids didn’t like it (not a fan of change, I guess), but I thought it was delicious. And the best part is that there are still leftovers from THAT, so I will be eating that for lunch tomorrow.

So that’s that. I’m thinking about baking some of my famous chocolate chip cookies next week, and if I’m successful, you may be hearing about that as well. I may even post a picture!

Coffee, Deafness

Being deaf is hard.

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Just a bit of raw honesty here… Today I am feeling overwhelmed with the frustration of being unable to hear. Today I want my hearing back. Desperately. I want to just have a day, or even half of a day, where I am able to play on the Easy Level. Where it’s not so hard to sit and be with my kids, and have conversations with them. This is HARD, you know?

Having said that, I feel a little better. The teary meltdown in the bathroom helped too. I think I will take my CI off for a bit and make another pot of coffee.

ASL, Cochlear implant, Deafness

I am learning ASL.

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I am learning ASL. S-l-o-w-l-y. It’s not easy learning a new language. It’s even harder when it is a visual language, and you are visually impaired. But, Helen Keller learned to finger spell (as well as countless others) so I am determined to continue with this. One itty-bitty step at a time. And I am hopeful that one day it will be useful. I don’t plan to need to carry on full conversations with it, but I do think it can be useful in communicating important messages to me those times when I cannot hear or recognize what is being said. There are times I’m not wearing my implant, like when I’m getting ready in the mornings, or settling down for the night. Say the battery dies while we are away from home, and I didn’t bring a backup. Also, there are times when the CI just doesn’t work well enough. Like when we are in crowded, noisy rooms, or when the dog insists on barking while we are trying to have a conversation.

All of that is to say that I believe this will be worth the enormous effort and time. It may take longer than I wish, but that is okay. I’m not going anywhere.

Oh! By the way, my 2nd CI surgery was rescheduled for May 8th. I will go next week for a urinalysis to be sure I’m clear of that nasty infection (which I think I am). I’m excited, but I’m not getting all hyped up like I did last time. Keeping my head out of the clouds.

One week following the surgery I am planning to participate in the SE Michigan Walk4Hearing. I don’t know if I’ll be able to walk the entire distance, but I’ll be there to try nonetheless. This walk is held to support the Hearing Loss Association of America and raise awareness about hearing loss. If you know someone who is affected by hearing loss (which you likely do), would you please consider donating to the cause? You can read more about it and donate at my Participant Page here: SE Michigan Walk4Hearing.

Aside from all of that, I am well. I hope you are too. It’s Friday! Enjoy the weekend!

Cochlear implant, God speaks, Multiple Sclerosis

Trusting God’s Timing

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Here’s what I love about God: He shows himself in the timing of things. I don’t even know if that’s Biblical, but it seems to happen for me. Maybe it’s just how He likes to communicate with us who are “type A” and live by their calendars. It certainly sends a clear message to me, that is for sure. April 13th, which was the day 2nd CI surgery was originally scheduled, means nothing to me. And when I was in that hospital bathroom to give them a second sample for testing, I was praying over that cup of pee. You can laugh at that – I did – but it’s true. I was praying that if the surgery was meant to be that day, that He would remove all infection from that cup. And with that prayer, I told God that either way, I was trusting in His timing, not mine.

Well, if you read my last post, you know what happened. It was not to be on April 13th. Much has transpired since that day, so let me try to break it down for you.

  1. The insurance approval was effective until May 10th, so the surgery was rescheduled for May 8th. My 1st CI was implanted on May 9th, 2014.
  2. My surgeon wants me to get another urinalysis done one week prior to the surgery.
  3. I have been taking Vitamin D supplements per my neurologist’s recommendation, and when I finish them I need to get new blood work. I take my last pill this week, which means I need to get the blood work done next week.
  4. My Tysabri infusions for MS are every 4 weeks, and my next one is due April 29th(next week).

What this means is that my infusion, blood work, and urinalysis, all have come due in the same week, the week prior to my 2nd CI surgery. A 2nd CI surgery that will come one year, almost to the day, after my 1st CI. And! All three procedures/tests can be done at the same building, which makes for seamless Spec-Tran ride scheduling.

All of these things, combined, make this Type-A girl’s heart happy, and assures me that God really is in control. Because I could not have planned it better myself.

Exodus 14:14 – “The Lord will fight for you. You need only to be still.”

Cochlear implant

A Disappointing Day

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I was scheduled for surgery today. I blogged all about it, I posted on Facebook, I really built up some excitement. I LET myself get excited. I got my hopes up. And it wasn’t to be.

I was informed late last week by Dr. Avery that I had a UTI, and was put on antibiotics that day. This would explain all the bladder trouble I was having. I had been blaming it on MS. Sorry, MS. It wasn’t you, after all. It’s just strange because I had lots of UTIs as a child and this was nothing like them. I had zero pain. But, I was having irritating urgency and that went away the second day on antibiotics.

So, I wasn’t really worried about it affecting the surgery. I had told the woman giving me my surgery instructions about the infection and the antibiotics, and she said to just make sure to take it the day of the surgery. To keep fighting the infection.

That should have been my clue, my warning that this may not happen.

Only this morning I was still very excited. I made all my preparations the night before, so this morning I was ready to go. The drive there was filled with text messages from well-wishing friends and family, and I knew plenty more were praying for me. Check-in at the hospital went smoothly, and I changed into my gown, gave them a urine sample, got plugged into an IV, talked to the anesthesiologist and then my surgeon.

Then we waited. At this point we were close to two hours into the pre-op process and I was still feeling okay. I wasn’t looking forward to the recovery process after, but you could say I was ready to get this done.

And then it all fell apart. The nurse (the same one I had last year who asked me if I missed hearing) told me I was still showing signs of an infection, and they wanted me to give another sample just in case. This is the point I started worrying, though we both know worrying does nothing. Mike kept telling me it would be okay. I tried to go along with that sentiment, but it’s hard. After about 20 minutes my surgeon walked in with the bad news. I would not be having surgery today.

It’s not entirely bad news. I’ll still have the surgery, but they want to be safe. If I were to have it, there is a small possibility the infection would spread, and if the infection ended up in my skull, it would mean having to take the implant out, clear the infection (which may or may not be an easy process), then re-implant. The re-implant process didn’t even sound like a sure thing. He said it was a small risk, but it has happened before, and the aftermath was a nightmare. Lots of trips back to the hospital and lots more surgeries. I wanted the surgery today, but I’m only trying to do this one more time. Remember, I told Mike after the first implant that I did not want to do this again. Surgery is risky and painful and scary, but this second implant will be worth it. Still, I only want one surgery. It’s better to be safe, than sorry.

Darn that nurse taking out my IV. She was so focused on explaining to me why “better safe than sorry” was a good rule (as if I were a child needing further explanation) that she was not focused on being careful while removing the needle. OUCH.

I did cry at the hospital, but I was pretty much done when we got in the car to go home. I was just so disappointed. I felt silly for getting my hopes up so high, only to be let down. But Mike reminded me that none of this was my fault, none of it was in my control, and all of it is a minor inconvenience in comparison to what could have happened had they not checked for the infection.

It will be okay. I will still have the surgery, and hopefully soon. Today we ate, we shopped, and I took a wicked nap. All in my “surgery outfit”, bright green Crocs and all.