Cochlear implant, Hearing Loss, Hobbies, Nonsense

In lieu of private journaling

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Sometimes I just want to drone on with the ideas swirling around in my head. Normally I reserve those thoughts for my private journal, but today I felt like they were innocuous enough to share here.

Lately I’ve been fairly busy. Not with super important or time sensitive things, but just generally busy. Between doctor visits, Bible study, housework, and spending time with friends, I’ve had a steady stream of activity. And while I don’t hate that, I find it is kind of a new thing for me and a part of me is a little worried that I’ll forget something important. When I was working and going to school I had a million things to keep track of, and it was never a problem. Stressful yes, but I managed just fine. In a way, I think I actually enjoyed staying so busy. Then I was thrust into long term disability – or as I like to call it, early retirement – and now I am learning I need to find new things to keep me occupied.

For awhile I was keeping myself occupied with a responsible schedule of housework. Cooking and cleaning and other general household management activities. However, that was getting so Boring, with a capital B. So now I’m trying to step back a little on those things, because they are still necessary, and make room for some fun activities. However, I never really had many hobbies before, so I’m in what I like to call a brainstorming stage.

I do like to crochet, but I don’t care for the creative stuff, and you can only make so many afghans. Plus, it’s very antisocial because I can’t really crochet with friends. Well, I can, but not like I used to. I used to be able to have conversations with people while crocheting, but now that reading lips is such a crucial part of listening for me, I can really only do one or the other. Listening takes a lot more effort than it used to.

I’ve heard that bars around town have trivia nights, and I think that might be fun to try some time. I am convinced I would absolutely suck at trivia because my memory is horse dookey, but I think as long as it was with friends it would be fun.

I really, really want to try karaoke. I’ve done it twice in my life, and I know people groan when you talk about karaoke, but those two times were very memorable and fun for me. I was never the best singer, and of course I’m even worse now, but I still think it’s fun to sing along while everyone watches and laughs. My husband says I should warn people when I get up on stage: “Hey everyone, I’m deaf. And once you hear this, you’re gonna wish you were too!” You have to be able to laugh at yourself once in awhile, right? And isn’t that what karaoke is all about?

I discovered last night that my favorite afghan has some pretty significant holes in it, which are like cancer to a crocheted blanket, so it’s on it’s way out. This was the first afghan I crocheted with my favorite pattern, so it’s a little sad that it’s dying. BUT, I made it with really cheap yarn and I’ve improved working on that pattern over the years, so maybe it’s time I start a new one, just for me. A new favorite.

When I woke up yesterday I put my cochlear implants on and discovered the right ear processor would not connect. Checked all the cords, and everything looked fine. Tried the left processor on the right side and that worked fine, so I knew it wasn’t my head (the lady in customer service laughed at that). So I’m down to one ear until the manufacturer sends me a replacement. I can’t believe I made it through that phone call with one ear! Pitches are much higher with just the one processor, so everyone sounds like chipmunks. Funny not funny :/ I am not complaining, but it really did spoil most of my day yesterday. It took me a good while to come out of that funk, but I’m better now. I’m finding that with just the one, every day sounds are not as harsh or bothersome, so that’s something to be thankful for. Still, I will be happy to have that second ear back.

Kids have a half day today so they’ll be home soon! Peace and hugs….

Health, Hearing Loss, Multiple Sclerosis, Visually Impaired

Here’s an honest post

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Not that my posts are never honest, just that this one is taking me a little bit of extra courage to post. I’ve got my big girl pants on here, folks.

I went to see my doctor yesterday to talk about anxiety. It’s something I’ve been struggling with for some time now, well over a year, only I’m just now realizing that’s what IT is. So I’m getting help.  And in case there was any shred of doubt in my mind that this was a real problem for me, I got worked up and nervous on the way to the doctor’s, worrying that we wouldn’t get there in time (with 50 minutes still yet to spare), and then the doctor’s office made me wait for a good 30 minutes. So I sat there, appearing completely calm, while my insides itched and twitched and crawled around. My heart was racing, my chest was getting so tight it was hard to breathe. When I describe all this to my doctor, and to friends who are familiar with anxiety, they nod in reassurance that it is a real problem and I’m not crazy.

These little anxiety attacks happen more frequently than they ought to. Very often, too often, they cause me to lash out in anger at my children. They don’t deserve that (usually lol). Also it’s just mentally exhausting to be walking around in an amped up state of mind, with your insides all twitchy and restless. Honestly, it didn’t bother me quite as much when I was fatigued. I’m not saying I want to go back to the land of fatigue, of course not, I’m just saying the anxiety wasn’t as evident. I didn’t really see it for what it was because I was blaming it on the fatigue and I could always just sleep it off. But no more. Now I am healthy and I’ve got energy to feel the things I’m feeling that need to be addressed. And now I’m addressing them. Lord, don’t leave me now. I still need You every day.

I’ve thought a lot about where this anxiety is coming from. Who knows, really, but I wonder if this is the residual effects of my vision and hearing loss. Now that I’ve reconnected with people and I’m in better physical health, maybe this is part of that grief and rehabilitation process. I certainly don’t like to give my disabilities more credit than they deserve, but it’s true that I live outside of my comfort zone almost 90% of the time. Nothing looks right, nothing sounds right. It’s all still very foreign to me. I have to believe that this won’t always be true. I have to believe that I’m going to find my new comfort zone. And when I do, believe me, I will move right in. I’ll decorate it with paisley, Wonder Woman, and maybe a cowbell or two. And all my favorite people will be invited!

 

Coffee, Faith, Friends, Running

Lazy Sunday afternoon

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Lazy Sunday afternoon… I feel like that’s a song lyric but I can’t seem to place it with any memorable melody. Oh well.

I finally have my computer back, as of last night. I ended up restoring it to the factory defaults, which took a good day and a half. Then I had to restore all my files, which took another day. So while it felt like FOREVER it wasn’t so bad. And I’m pretty sure I have everything back. This computer is not that old so it shouldn’t be having so many issues, in my opinion, but I am glad to have my backup so I don’t lose my photos and documents. Technology is amazing, when it works.

And it is working, that’s for sure. I was able to scan my Bible study notes, so I can get caught up on my lesson homework for this week. We are studying the book of Romans, which is an amazing book. Lots of practical truth in there with a good dose of conviction, grace, and humility. I’m loving it.

Yesterday I ran the 2017 Hot Cider Hustle 5k with some awesome ladies. I had not trained for it so I had some really low expectations going in. Then when the forecast showed rain for the day, my expectations dropped to another level. My new goal was twofold, finish before sundown, and have fun. My chip time was 43:45, which I don’t think was too bad considering the lack of training and the rain. I think my 5k times have usually been around 38 or so. I have to give a shout out to my sister who came and ran not only a PR, but placed 1st in her age group! Last year it was my brother placing 1st in his age group. I think that is some kind of weird and awesome tradition.

When I ran this race last year I had so much trouble with the route, so I wasn’t going to run it again. But then I saw that they changed the location altogether, with a much safer looking route, so I couldn’t resist (I’m totally in it for the swag – hoodies, coffee mugs, hot cider) and it’s just a fun race so I hope to be able to run it every year.

We became official members of our church today. We’ve been attending there for well over a year and just hadn’t really gotten around to it. But things finally did slow down and we were able to make it happen. We love this church. Everyone there has been so welcoming and genuine – both with their personal faith and with their hang-ups – that we feel like it’s a great place to have some healthy encouragement and accountability as we work to become better followers of Christ. That and they have free coffee 😉

This concludes my lazy Sunday update. I hope everyone is hanging in there. HUGS!!

Daily Snippets

Blogging from my phone today

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Because this:

I came home from bible study and was going to scan my study notes, because they are difficult for me to read and I can enlarge them and view them in high contrast on the computer. I was met with this. 100% means it is done, but clearly it’s not because that little circle is still swirling. And these are the times I’m reminded that even I can be an impatient person.

If I weren’t down in the basement I would throw the computer out the window.

Oh heavens, now it’s reverted to 30%! I’m gonna go make myself some lunch. Later, gators…

Family, Food, Funny story, Low vision, Multiple Sclerosis

Adventures in low vision

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I’ve been starting to wear my contact lenses again. They don’t have the glare protection I have with my glasses so I don’t see quite as well with them, but it’s a worthy trade off. With my contacts I feel much less inhibited, which is of great value when you have low vision and hearing impairment. That and it kind of allows me to tuck my hair behind my ears, which is a habit I regretfully had to give up when I got my cochlear implants. Between the earpieces and my eyeglasses, there was just no room for my hair.

I recently went back to the eye doctor to update my prescription so I could order more contacts and I asked them if it would be a problem to just wear one contact. My visual field index in my right eye is 27%. Meaning out of an entire area normal eyes can see, I am unable to see 73% of it with that eye. Which makes it kind of a useless eye, in my opinion, so I don’t feel justified in paying for a contact for that eye. The 27% I do see has clearer vision anyway, and can get away without corrective lenses.

I wear colored contacts that pretty well match my eye color, and that is just to prevent me from losing the contacts altogether. I have a hard enough time seeing things without contrast, so when I drop a clear contact, it’s nearly impossible to find.

All that to say, if you see me out and about and I’m not wearing eyeglasses, take a real close look and see if you can tell which eye has the contact in it. The ladies at the eye doctor assured me it was a pretty close match (although one of them thought it would be “cool” to have two different colored eyes), so I’m trusting they were being honest. Because I’m fairly colorblind and can’t tell for myself.

If anyone is really interested in this visual field index stuff and knows how to do the math, maybe you could tell me how much total vision I have with both eyes combined. Left eye sees 51%, right eye sees 27%, so with that means… what? That it’s a good thing they don’t let me drive anymore? That’s all I can say for sure!

I was gonna end the post there, but I just remembered a funny thing I did today, to give you a glimpse of life with me and my crummy eyes (my family is unnervingly unphased by it by now). Tonight I was making scrambled eggs for the family and I grabbed an almost empty carton from the fridge to add milk to the egg mixture. I knew as soon as I started pouring that I had grabbed the wrong carton. What I thought was the last of the milk was actually the last of the apple cider. Oy. I went with it though, cuz I didn’t figure it was going to hurt anyone, and I don’t think I poured enough to really alter the flavor. Crap like this seems to happen to me on a fairly regular basis, but I have to laugh or else I would cry. Life goes on, right?

Daily Snippets, Disability, Domestic Engineer

Learning life without fatigue

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I am still really super happy to be rid of fatigue. I don’t think that will ever get old. Not having fatigue feels a lot like someone just handed me my life back. Now I’m just figuring out what to do with it. I have all this energy during the day and I get feeling restless. But when I’m feeling restless it’s still hard to think of what I should or could be doing. I don’t really want to blame my brain for not cooperating, but it is what it is.

I recently decided I want to be more intentional about how I use my time throughout the day. “Going with the flow” is okay every once in awhile but I’m not real comfortable staying there. I want to be serious about keeping up with housework, but still give myself time to rest when needed (not to mention recognize when the rest is needed). My solution? I downloaded an app on my phone – because there is ALWAYS an app for that. It’s been helping me keep track of all my daily tasks, occasional to-dos, and ongoing habits I’m trying to form. Spending time with God, playing fetch with the dog, cleaning house – these are all things I want to be doing every day. The app awards me points every time I complete something, so I’ve added things like taking my medicine, doing the dishes, taking out the trash, vacuuming, and cleaning the bathrooms. It’s made doing stuff kind of a game, and I’m already on level 4! I haven’t quite figured out what I can do in the “game” at level 4 but I don’t really care because apparently I’m a simple girl and I’m happy enough moving up the level ladder.

I’d write more, figure out a way to cleanly close this post, but my tummy is growling at me so I’m off to the kitchen! Have a happy Friday y’all!

Multiple Sclerosis, Photos

Fighting like a girl

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The nurse put my iv in my right hand, right above my super rad Wonder Woman bracelet my mom made for me, so I couldn’t resist taking a photo. Because when I think about fighting like a girl, I think about this constant fight for my health against MS, and so it just seemed appropriate.

Courage, bravery, stubborn determination. That’s how I fight this. How do you fight?

Disability, Family, Food, Low vision, Partial Blindness

Winner, winner

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Okay, so one of the things I had been struggling with is the fact that I can’t really share meals with my family the way I used to. I come from an extended family full of food lovers, and we do our bonding and make our best memories over a meal. So not sharing evening meals with my own immediate family was affecting me more than I had anticipated.

I don’t expect them to eat what I eat, and I don’t even have the desire to try to convince them to. I know it would be a futile effort. It’s certainly not something I came into overnight, so I couldn’t expect that of them. I did come up with an idea however, and that was to serve one fully vegan meal per week, one they would be most likely to enjoy. I ran the idea past them a few nights ago and while the kids were immediately against it, my husband was on board. That alone surprised me, but then he went a step further and told the kids he thought that since I do so much for them and I make compromises all the time, that they should be willing to do this for me. And then they all agreed, and I was in heaven. It was so nice to have their support in this. Not to mention, I fell in love with my husband all over again, for stepping up like that.

Anyhoo… ever since, I’ve been trying to find some easy vegan recipes that aren’t too off the wall for them, and I’m coming up rather short so far. Because they are mostly super picky eaters. I only plan to do one meal a week, so I’m not terribly worried. I’m sure between Pinterest and a good old fashioned Google search I’ll find plenty.

Tonight was the first night we tried an an all vegan meal. In order to ease them into this, and to show that I’m not just trying to introduce them to a bunch of foreign foods (think seitan and tempeh), I served waffles with strawberries and whipped cream, with fresh red grapes on the side. Waffles made with almond milk and egg replacer, and coconut whipped cream. They loved it, and we all agreed that it was delicious! I had never had the coconut whipped cream before, and I dare say it tastes better than the dairy version. Winner, winner, vegan dinner.

Oh, and also today I had a visual field test at my neuro-ophthalmologist’s office and it turns out my eyes have both improved! I can now see 51% with my left eye and a whopping 27% with my right.

It’s safe to say that today was a really good day. Tomorrow is infusion day, so I’ll get to relax in their new heated seats and sip coffee and read a book. I’m livin’ a glamorous life, folks. Envy me. I dare you.

Food, Multiple Sclerosis

My food obsession

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This is hilarious to me. I started this blog post with the above title 8 months ago. EIGHT. And the obsession is still here. What I thought would be a temporary thing has become the norm. So I’m obsessed with food. I love eating food, I love talking about food, and I’m even learning to enjoy preparing food. That last bit surprises me, because I’ve never enjoyed cooking. That was always my sister’s thing, and my dad’s thing. Not my thing.

However, when I gave up dairy and eggs back in June (in addition to the elimination of meat last November), I had two choices: 1) Be stuck with boring beans and potatoes, or 2) Learn to cook a few things. I was content with choice #1 for awhile, but after a month or two I was starting to get a little more adventurous. And by adventurous, we’re really just talking about things like using real garlic cloves and learning how to chop vegetables. So while I’m nowhere near entering any culinary contests, I’m certainly learning how to hold my own in the kitchen. I’m learning how to throw things together without a plan (gasp!) and I’ve been rewarded more times than not. Vegan food is delicious, people. Like ridiculous good. I’m still very hesitant to broadcast myself as a vegan (more on that below), but that’s basically where I am. And it’s one of the best decisions I’ve made for myself.

Since these were serious eliminations from my regular diet, I’ve been trying to keep track of how my body has reacted. The most notable changes happened after ditching the dairy and eggs. These were the hardest for me, psychologically, to say goodbye to, but the rewards make it all worth it and I’m not even tempted to go back. Since June, I have not had one monster premenstrual headache. I used to get these every single month, and I am a big baby when it comes to headaches. Seriously. Since June I have also not had one episode of nerve pain in my feet. Actually, that’s not true. I had a hinting of it while camping in August but I also cheated that week and had some desserts containing dairy. That nerve pain was something that was happening on a fairy regular basis, yet now it’s only a memory. Constipation? No longer an issue. Fatigue? What’s that again? It’s all gone. Fatigue. I think the fatigue has been the most notable challenge throughout my MS journey. In the 8 years since my diagnosis, it’s been the one constant in my list of symptoms. But it’s gone, just like that, and I am still amazed. So when I am asked if I will ever go back to eating dairy, the answer is a confident NO.

If I ever feel like I miss it – the food, not the symptoms – I can just have a bite of someone else’s food and wait for the effects to remind me why I gave it up. Every time I have been tempted and had a small portion of what I’m fixing for my family, I’ve been rewarded with a killer headache within a few hours of eating. It’s nuts.

Now the reason I hesitate to tell people I’m vegan is because there are enough mean vegans out there giving the good and kind vegans a bad name. And for a lot of them, veganism is right up there with religion and politics. So I worry that by stating the fact that I’m a vegan, that I will scare people away, or they will think I’m going to try to pressure them into joining the club. But I’ll tell you, I don’t really think I fit in any club here. I’m part of a lot of vegan discussion groups, to get food and recipe ideas, and I’ll tell you we don’t see eye to eye on everything. So while I’m not walking around wearing the t-shirts and drinking the Kool-aid, if I’m at a restaurant I will be sure to tell them I’m vegan to insure I don’t get served anything that’s on my no-no list. Which is a whole other post, y’all, cuz seriously it’s crazy that we can’t find a way to serve delicious food in this country, in this day and age, without smothering it in cheese.

Daily Snippets, Funny story, Kids, Visually Impaired

We call this an ouchie wah-wah

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So thanks to my poor vision, I guess, I ran head first into my daughter’s loft bed. Again. This time super duper hard. So I think I’m gonna have a major goose egg on my forehead by morning. We need to put up a sign that says in bold, high contrast colors, “DUCK!!” Which, coincidentally, rhymes with the word I would have said had my daughter not been right there to witness my stupidity.

Can we just start over now?

Deaf and half-blind runner with multiple sclerosis