Category Archives: Family

I suck at consistently writing

Did I really just go an entire month without even thinking about blogging? So much has happened, I don’t even know how to update you properly.

I’ll say I do believe the unplanned hiatus was a result of the medication I’m now on for anxiety. It starting working right away, but I discovered it was actually working a little too well. I went from being anxious about every possible thing, to not caring about much at all. Even the important stuff. So a few days ago I started taking half a dose, and that seems to be working out well. I’m caring again but I’m not having panic attacks, and that makes me very happy. I’m praying that I’ve found the right balance and look forward to moving on with my life.

My daughter turned 8 a couple weeks ago. My precious baby girl is 8. She’s growing up too fast for me. I just need her to slow down. She is currently obsessed with unicorns and animal print – two things I have zero interest in or experience with, so I’m sort of watching her from afar, in awe of her sense of self and unashamed quirkiness. I know she’ll look back on these days and wonder what she could have been thinking and ask me why I didn’t forbid her from making these disastrous fashion choices, and I cannot wait for that day. I was her age during the 80’s, so I have plenty of those groan-worthy memories to look back on.

We threw a party to celebrate right here at the house, with a handful of Natalie’s friends from school and the neighborhood, both old and new. The girls gave themselves Jamberry manicures and ate unicorn cake and rainbow sherbet. Then at the end we had time leftover so the girls put together a fairly rowdy game of Simon Says. It was really something to be on the outside, seeing her in her element and enjoying spending time with her friends. She just seemed so grown up, so “Eight.” It’s one of those days I hope I never forget.

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In other news, I went to a new audiologist today to update the programming of my cochlear implants. While the audiologist I had been seeing was nice and all, we never felt like she really knew much about the technology for my implants. I think she probably dealt more with hearing aids. With my last programming, my husband was positive that it was a big change in the wrong direction, and that I ought to find a new audiologist. Well, I finally did and it certainly paid off. The office only services people with cochlear implants, so that is their specialty. We knew as soon as we walked in that we were in the right place. The visit took a solid two hours but it was thorough and I left feeling a ton more confident about my hearing level and speech recognition. Exhausted, but confident. I’m looking forward to the days ahead, for every opportunity to hear all the typical sounds in a new way with this new and improved programming. Technology truly is a wonderful thing.

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Adventures in low vision

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?

Winner, winner

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.

It’s always good to be home

The kids and I went camping last week with my dad’s church family. It’s something the kids have been doing every summer for the past four or five years. This was my dad’s last year to be able to go, because he is retiring next June. So there was a lot of bittersweet floating around. However, I and the kids have been invited back for future years, since they have especially bonded with a lot of the kids there. We had a lot of fun. The kids swam, rode bikes, played gaga ball (??), went kayaking (my favorite part, may write a separate post about that), and played tug of war in the river. Lots of great memories.

My legs are in shambles. Good, old fashioned muscle pain from all the walking, I suppose. I walked constantly for the whole trip and I came back home to find I had gained 5 pounds. Seriously. I guess I forgot to mention there was a lot of eating as well!

I also woke up this morning with considerable nerve pain in my feet, which is unusual for the morning. It usually only comes around in the evening. I guess my body is just paying the toll for all the fun we had. I am more than okay with that. Just gonna keep moving forward anyway, with small breaks in between. No need to rush.

Speaking of waking up this morning… my husband woke me up to let me know that the refrigerator wasn’t working, and that he needed me to move the food to the fridge in the basement. He was on his way out the door to work but he is hoping to come back at some point to fix it. We’ll see. I’m just really grateful that we have a second fridge for these sorts of occasions. So that was my first task of the day, and I’m definitely going to take advantage of an empty fridge to get it all wiped out. There are lots of sticky spots and who knows what’s in those nooks and crannies.

The kids are happy to be home. The dog is happy we’re home. Hubby is really happy we’re home. Waking up on a Monday in our own beds is surely something to be thankful for, no matter what the day has in store for us. And coffee, of course.

 

Oklahoma in July

The kids and I flew to Oklahoma to visit Grandma Deb and Grandpa Dave (my mom and stepdad) for a whole week! EEK!! The last time any of us had been on a plane, Luke was 2 and Natalie was in utero. So it was pretty much like their first time flying. I was a nervous wreck through all of it, but the kids did great.  And once we were at Grandma’s, we settled in quite nicely. Pictured below on Natalie’s head is their green cheek conure, Riley. I learned very quickly that I have a new fear of birds flying near my head, mainly because when he flew toward me I could feel the wind from his wings before I could see where he was. Thankfully, he was pretty harmless, and by the end of the week we were getting along just fine.

We had so many activities in store! Our first full day there we went hiking near some natural springs. I took a lot of really blurry photos of that, so you’ll just have to trust me that it was really cool and the kids enjoyed themselves.

The next day Grandma took us to the salt plains to dig for selenite crystals. I was happy to stand around and take pictures while they got dirty. Luke found the first crystal, which led us to the mother load of crystals. It was pretty exciting. (Oh, and I got to drive a car! Since it was wide open space and no one was around. Don’t tell anyone though lol)

Another day we visited the children’s science museum in town. This was similar to the one we have back home, but with a different mix of things to see. The kids had a blast here too, and it was a good way to stay out of the 100 degree weather.

I’m sure I’m getting the order of events mixed up, but at some point towards the end of the week we visited what we were calling the rock museum. The museum was a house, made entirely out of rocks, that belonged to a couple that did a bunch of stuff, and kept pretty much everything they owned. So now they keep it on display and let people come and look at it. Which is funny to me, because it’s just some people’s old things, preserved for no apparent reason. I still thought it was pretty cool to see all these items from an entirely different era, and the kids were great sports about it. Grandma even bought them some geode stones to take home and smash open.

Let’s see… we also did some put-put golfing, because my poor deprived children had never been, can you believe it!? I beat everybody, both times we went, but the kids scored a couple holes in one, so they were strong opponents, for sure. We celebrated the second day by taking them out for ice cream, as you can see below.

There was also grilling, eating out, a bit of swimming in the blow up pool to cool off, jewelry making with Grandma, and of course lots of playing with Riley, the bird. I’m sure I’m leaving out details. Yes, flying was stressful for me, having to rely on the kids to see and hear things for me, but it was really nice to get where we were going so quickly. For all the fun we had and getting some quality time with Grandma and Grandpa, it was totally worth it. It was a fantastic, full week of fun and I am so glad we went. We hope to do it again next year.

 

I’m a crier…

I know, I know, I went a full month without blogging. Life just gets so busy in the summer, and I’m so busy trying to be “present” that I rarely get the time or mental energy to sit down and talk about what’s going on. And now that I do, I really don’t know where to start. So I’m just going to start with today.

Today I was scheduled to have my monthly Tysabri infusion for MS. I’ve been bringing my daughter with me to these infusions while school is out, and today was no different. Except that it was, because the infusion center had moved to a new building, and today was our first visit there. I was informed upon arrival – after being dropped off by the Spec-Tran – that I could not bring my daughter back with me, per a new policy. I immediately freaked, wondering what I was going to do. Do I let her sit alone in a waiting room for the three hours, do I cancel the appointment and call Spec-Tran to see if they could come back to get us, or do I text someone who may be able to help. I ended up texting a friend, and she was able to pick her up. But she had plans that i didn’t want to disrupt, so I eventually texted my father-in-law to arrange a transfer, and also to have him pick me up when I was done, and take us both home.

After my friend had picked up my daughter, I went back up to the infusion center to finish getting checked in. The nurse who took me back, Nell, asked me how I was doing today and, since she was a familiar face and had asked the question, I of course broke into tears. Because that’s what I do. When I’m happy, sad, scared, mad, whatever, I cry. And Nell, bless her heart, told me to just let it out. So I did. And then the heat started to leave my bones and I was able to breathe. They checked my blood pressure and it was normal, believe it or not.

All said and done, everything was fine. My daughter was fine. She was safe and with people I would trust with my life. I got my medicine – even got the IV in on the first try without much spazzing in my vein – and it was fine. A really effing frustrating day, but it was all fine. And the Tigers had a rain delay so I’m actually able to relax at home on my comfy couch with my chocolate peanut butter non-dairy ice cream and watch the Tigers play.

That’s all for now, but I do want to share all the other exciting stuff that’s been going on. Trips the kids and I have taken, foods I’ve been enjoying (and some not so much), the books I’m reading, movies I’ve been watching, stuff like that. And I will, I promise. Not today, but soon. Right now, ice cream and baseball.

In sickness and in health…

You know, I try really hard to be as healthy as I can. I can’t undo the damage MS has already done to my nerves, but I can do the best with what I’ve got left and the body I’ve got now. I stopped eating meat back in November. It’s gone well, so I gave up dairy last week. Right after I cheated a few days eating meat. And then I got sick with some nasty chest congestion. Ugh. The cheating was certainly not worth it.

Then today, I’m having coffee with a friend and BAM! I started having an attack of vertigo. It was so weird, y’all, I mean I have experienced dizziness but this was so much more. I mean, everything around me seemed to be literally turning. And it lasted for a good two minutes before it calmed down. The problem was that the feeling never really went entirely away, even long after my friend had left. I texted another friend to see if what I was experiencing was normal, and if I should go the urgent care or something. I was still feeling super dizzy and I was having some numbness in my left arm. But as I was texting with her I realized that yes, I probably should go. So I called my husband to come get me. My knight in shining armor dropped everything and came as quick as he could. In the meantime my friend came over to check on me and keep an eye on my kids while my husband and I were at the urgent care.

Thankfully, all my vitals and an EKG were normal. The doctor explained that it was most likely inflammation from my recent chest cold that got transferred and consequently trapped in my ear drum, and that it should clear up if I just give it time. In the meantime he gave me an anti-nausea medication to take in case the dizziness is really bothering me or making me feel unsafe. The medicine has helped tremendously.

I was just so ecstatic that I wasn’t having a heart attack and that I didn’t end up in the hospital because I have a family reunion to go to this weekend that I am SUPER STOKED about. Because I have an amazing family full of aunts and uncles and cousins and cousins-plus whom I never get to see anymore. I was so afraid that my stupid health issues were going to ruin that, so I’m just happy. Happy, happy, happy.

I did tell my husband – who knows how hard I try to be low maintenance, and loves me despite my utter failure at it – that I’m ready to get back to the “in health” part of our marriage vows. Seriously.