Category Archives: Disability

April 30

What shall we talk about today, friends?

Baseball season has begun for my son and husband (he is a coach for the team). Their first tournament was last weekend and the girls didn’t go because it was ridiculous cold and windy and we are wimps about that. So we stayed home and my daughter watched YouTube for 38 hours while I played around in the kitchen making delicious vegan food.

Dance is in full swing for my daughter as they prepare for their recital in June. I received an information packet about all that is required for the recital and OH EM GEE am I overwhelmed! There is a dress rehearsal and requirements for hair and makeup and this is so out of my comfort zone. I was never in dance and I don’t wear makeup (much). I don’t own eyeliner or lipstick, so how am I gonna know how to put it on my daughter?? I don’t know, but I definitely plan to enlist some help on this one.

I have to mention that lately I am obsessed with this vegan cashew “mozzarella”. It is so easy to make and super duper yummy. I add it to everything I can think of, but my favorite use for it is grilled cheese sammiches! My husband will tell you I make the best grilled cheese sandwiches, and I won’t deny his assessment. I make a lot of them, and I’m always really sad that I can’t eat them, because YUM. But now, with this cheese? I’m in sandwich heaven! I also bought little mini pizza crusts and sauce so I can make my own little veggie pizzas at home. With cheese! So that’s what’s on the menu for today and my tummy is growling just telling you about it.

I’ve been running, sporadically. I have a 5k I’m running with my son Friday night so I had to be sure I’m prepared for it. I don’t think I’ll beat prior years’ times, but I’ll be happy if I can finish in under 40 minutes. I ran a full 3 miles today and dang, why is that 3rd mile so much harder than the first two? But I didn’t fall. My left foot was dropping a little, but not nearly as bad as it’s done in the past. I did have nerve pain in my feet but thankfully I didn’t notice it until I was finished with the run.

I always have some anxiety at these races because strangers don’t know that I’m disabled. So if people are trying to get my attention by yelling or waving, it’s not gonna work. I’ve been bumped around during races because people assume I can see to get out of their way, or hear them coming to move aside. So I bought a reflective running vest that says “Deaf Blind”. It’s really bright and in big block letters so there’s no way I won’t be noticed. I feel a little weird about wearing it at the race but I have to convince myself that it WILL make me feel safer, and that’s all that matters. Maybe I’ll even run a little faster, knowing that I’m safer. I guess we’ll see.

Anyhoo, I’m sure there’s more I’m forgetting but I’ll leave it here for now. I’m gonna go make me some vegan pizza! 🙂

Advertisements

Depression looms

I struggle with depression. Back many years ago, I didn’t struggle with it, I just gave in to it. That’s never a good thing. Thankfully at the time I had some wonderful friends who spotted what was going on with me and encouraged me to get help. It was because of that experience that I can usually sense when depression is threatening to take over again. And thankfully I’m not afraid to be open about it with my loved ones, and I know how to ask for help.

For the past month or so I’ve been sort of dipping my toes into the pool of depression again. It’s not a game I like to play. I can drive myself crazy analyzing the potential causes, searching for solutions. It’s all a bit futile, if you ask me. There are so many factors that make me a potential victim. Family history, multiple sclerosis, recent trauma… oh, and can’t leave out living in Michigan where there is a severe lack of sunshine. I need my sunshine.

I’ve been sleeping a lot, and it concerns me that I could let that go too far. I do feel rested when I sleep, so I’m trying to listen to my body’s cues and determine when it really needs rest or when it’s just the depression killing my motivation. I made a list today of some coping mechanisms. This is based off of what I learned from my housekeeping hero, The FlyLady, a long time ago: you can do anything for 15 minutes. So I have a list of the things I can do for 15 minutes, so that when I’m lacking motivation, I don’t have to think about what I can do. I just have to pick from the list. These are all things that tend to make me feel better or motivated to stay up and out of bed, like crocheting, washing dishes, journaling, showering, paying bills (no kidding lol), and blogging. On the really bad days when I can’t muster enough oomph to do even those simple things, my short list of motivators is to wash my face, get dressed, take my medicine, and/or drink a glass of water.

Depression is real, man. A dragon that is so unbelievably difficult to slay. But one day at a time, I’ll be fighting it. And if I can’t kill it, at least I’ll leave it seriously wounded, while I move on with my life.

Dang it all…

I could not come up with a better title than that. Because, well, it’s after 10 pm and my brain is mush. So yes, I’m going to write a blog with mush-brain and see how you like it. Ha!

So what’s happening lately? Well, the kids are back to school, sort of. We had a big fat snow day on Friday and then a scheduled day off to honor Martin Luther King Jr. Of course nobody went sledding because it’s cold man, and all the wifi is indoors. I’m still working on getting my routines back, aka my groove.

I’ve got a new responsibility I’m pretty excited/nervous about. I had been praying for some time about wanting to get back to doing what I enjoy, which is accounting. I miss it so much I obsess over our household budget and I balance our checkbook way more often than necessary. But alas, my prayers have been answered! My pastor called me last week wondering if I could help out the church with some bookkeeping and payroll. Heck yes, I said, I’m on it. I warned him that I was nervous because this is the real-est responsibility I’ve been given since my disability, but he assured me they were very forgiving, and grateful to find someone willing and knowledgeable. I’m stoked. It’s a little scary realizing that my to-do list now holds tasks that must not be overlooked, but I think I’ll be able to adjust just fine. Up until now it’s just been a lot of household junk like vacuuming and cleaning toilets. Which no one really notices if I forget to do.

I’m also doing a lot of crocheting. It’s such a relaxing thing for me, it’s a form of therapy in a way. I was running out of projects so I came up with this insane idea to make an afghan for each of my nieces and nephews, of which I have 12. These afghans are easy to do but they are time consuming so I’m just going to knock them out one at a time and give them away as I finish them. I’m starting with the oldest child first and we’ll go from there. Of course after I had this brilliant idea I found out there were three women in my extended family who are all pregnant, each with their first babies, so I had to put the afghan project on hold in order to make some adorable soft baby blankets.

All this busy-ness with accounting and crocheting leaves me zero time to obsess about food. Which I suppose is good, but it means I haven’t really discovered any new recipes to try and I’m getting rather bored with my vegan diet. No matter, I really can eat oatmeal and potatoes all day if need be, with a smoothie thrown in once in awhile. I’ll get over this hump, I’m sure.

Not a whole lot else going on around here, and if there is I can’t remember what so it must not be all that important. Good night folks, and may you dream of delicious donuts!

Learning life without fatigue

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!

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.

Brain Dump

What’s on my mind, you ask? (If you didn’t, feel free to move along…) Food. Coffee. Food again. Running. Writing. A cool breeze on the back deck, birds chirping.

Yesterday I signed up for a 5k that happens in six weeks. With the exception of this morning, I had not run since before school let out for the summer, on account of my knee and hip pain (see dumb butt post). I know I can walk a 5k, no problem, but my goal is to run it the entire way. So I’ve got some work to do to get back to that place.

Side note: the cool breeze is upgrading to a brisk wind. I may have to go inside 😦

The summer is over. There were a couple trips there at the end I haven’t blogged about, but I may yet. Late is still better than never, isn’t it?

School started for my kids on Monday. It was a half day, and they don’t have school on Friday due to Labor Day, so it’s what I would call a “soft opening” to the school year. The kids are thankful for that, but I would have been right on board with jumping right in with a full week. I like my weekdays. I can do my own thing and not have to worry about what the kids are going to do. It’s one of the luxuries of disability that I’ve become accustomed to.

You know what I’m excited about today? You’re gonna laugh, or groan, or both, but I’m really excited to eat macaroni and cheese for lunch. I stopped eating dairy and eggs in June, and it’s been so much harder than giving up meat (that was last November). I’ve since learned to drink my coffee black, and found some really great non-dairy milks, yogurts, and ice creams, but had yet to find a suitable replacement for cheese. At least not any that you would buy pre-made. My cousin told me awhile back about cashew cheese that’s easy to make but I just hadn’t gotten around to trying it. Well, I ordered the necessary ingredients a few weeks ago on Amazon (easier than trying to find nutritional yeast and tapioca starch locally) and finally made a batch on Tuesday. I’ve been putting it on burritos, tacos, pizza even, and it’s surprisingly delicious! So I have a box of macaroni noodles just waiting to be dressed up with this stuff, and I believe today will be the day.

My daughter started taking ballet lessons last week. She’s been wanting to for years (she’s only 7) but I just kept putting it off because it’s way out of my comfort zone. But I finally worked up the courage to get it going, and I’m so glad I did. The smile on her face when we walked into the dance shop to buy her ballet slippers was priceless. I had not seen her light up like that in a really long time. Maybe ever. And she’s loving the practices, and looks forward to it every week. I’m really excited to see how this goes.

My son, the big sports guy, is taking a break from competitive sports for the fall. He’s going to take swim lessons at the YMCA, to learn to be a better swimmer. Then when wrestling season rolls around, he’ll be back at it. The kid has so much energy we need to keep him busy or he’ll drive us both nuts.

I chopped 8 inches off my hair back in July and I am loving it. I actually think I want to go a leeeetle bit shorter. Just a little. And highlights. The highlights are happening next week, for sure. We’ll see if I end up with just a trim, or if I decide to cut it shorter.

Oh! And did I mention I get my groceries delivered now? Oh yes, I’ve been anxiously waiting for that service to come to our area and I’ll tell you it’s even better than I had anticipated. It is saving us (me) SO MUCH stress. I don’t have to plan our meals or grocery trips around my husband’s schedule. I need stuff, I just order it online and it comes right to the house. Just like magic.

You can say things are going well. I’ve left out a lot, believe it or not, but that’s enough for today. Until next time…

Hot Mess

85 degree summer heat.

Baseball tournament.

M.S.

Tingly hands debut.

Nerve pain.

Broken A/C freak out.

Sunburn won’t let me cool down.

Feeling helpless.

How does this not bother everyone else the way it does me?

What is wrong with me?

Oh yeah…. M.S.

Crying in the shower, snot running down the drain.

A good night’s sleep tried to help.

Literally dragged my foot to the bathroom the next morning (I did say “tried”).

I sat and waited in the physical therapy office for a half hour before checking in with the receptionist to see what the hold-up was. She was quite obviously unaware of the time of day, and had forgotten to let the therapist know I had arrived. It goes on from there, my bad luck, but I’m tired of hashing it out, those dumb details, so I’ll attempt brevity. I missed my ride, they tried to get me a new one, but I took a ride from a friend instead. Because I didn’t want to risk unleashing my emotions on a complete stranger. I came really close to doing that already at the therapist’s office, after discovering I had missed my originally scheduled ride. My husband reassured me that this was just a minor bump in the road, which I should have already known of course, but he knew I needed to hear it (He still amazes me, coming up with the right thing to say).

This was not my typical Monday. I don’t usually have to be anywhere, or talk to anyone but my family. So it was hard to do in the wake of a rough-on-me weekend. I just didn’t have the tools necessary to cope with minor hiccups like delayed appointments and missed rides. I spouted my frustration on Facebook and received lots of encouragement in return, but I felt a little shameful doing it. Because I like to be the positive one. I guess today I just decided it wasn’t worth the effort. Because it was going to take a lot of effort.

But those positive words helped, and the ride from a friend, and then a good nap in my own bed (with working air conditioning!). The kids were with grandpa for most of the day so my only interruption was the dog barking at who knows what. It was nice. And then I grabbed a beer, turned on some Led Zeppelin, and started chopping vegetables for dinner. I managed to relax. Truly relax.

I have more doctors to see this week and then I start some physical therapy next week. I’d bore you with the physical therapy details if I could remember them. So you’re in luck, cuz I have a terrible memory.

Peace out, readers. I hope you take some time this week to relax. Really, truly relax. It can only do you good.