Oh boy, you guys. My brain, my legs, my arms. They are all so tired today. I moved around and did things, but most of the work I did was sitting here at the desk. I tidied up my space a bit, because when I am surrounded by clutter I just can’t think straight. Too much nagging from the objects needing my attention.
I had planned to work on wrapping Christmas gifts today, but the kids had a snow day. That meant my early morning meeting with the school was postponed as well. Again. They had a snow day last week on the same day as my scheduled meeting. Anyway, so no wrapping got done. However! I did organize the gifts, assessed what we have, updated my spreadsheet (of course I have a spreadsheet) and even placed a couple last minute orders. One of them won’t get here in time for Christmas, but it will be close. So I’m ready to devote tomorrow to boxing and wrapping the gifts and I do hope I have the house to myself so I can accomplish that in peace.
On the subject of Christmas, you may remember last Saturday I posted about us going to get our Christmas tree? Yep, and it’s still sitting in our living room, without decoration. The dogs don’t seem to mind, but I talked to the kids and we’ve decided tomorrow will be the day to decorate, so I think I’ll make some peanut butter popcorn tomorrow so we have something yummy to snack on while we decorate. It always feels to me like a daunting task, decorating the tree, but the kids are almost fully grown adults and are super helpful, so it’s really never as bad as I expect. We will have a good time.
And that is all for today. I’m sure there was more I wanted to talk about but I am beat. I did not exactly rest the way my body needed, so I’ll be putting myself to bed once I hit post. Good night, y’all.
Category Archives: Holidays
Daily Post #4 – December 8, 2024
Another busy day today. I went to church in the morning. That was nice. We had our annual meeting at the start of the service, which just means the board updates the congregation on the state of the church’s finances and other administrative items. Super boring, but crucial because we are a 501(c)3 corporation. And if we were to ask the congregation to come to a meeting, they likely would not show up, so you have to catch them while they are there for the service. A captive audience. Sneaky, I know.
After church the husband and I went back to Verizon to see if we could get the new phones set up. Negative. I had to unfreeze our accounts with the credit bureau (I froze them a couple months back when there was a huge data breach), and they hadn’t updated that information with Verizon yet. It was a weekend, and the guy at Verizon said that was likely the reason. They just need a human to handle it, perhaps? We are hoping that it gets resolved tomorrow because poor daughter is itching to get a working phone back.
The third act of the day was a baby shower. My daughter and I attended, and I’m so glad she went with me because I didn’t know anyone there. Just the mom-to-be and her mother-in-law. It was a solid three hours of estrogen and I was pretty exhausted by the end of it. But, I’m happy for the new parents, and I’m glad we were able to be there.
I finished the day with mundane stuff that needed to be done. Washed dishes, folded laundry, vacuumed, that sort of thing. Took a look at my calendar for the week to make sure I have all my rides scheduled. I still have a blood test I need to get so we’ll see when I can squeeze that in. It’s the test for the JC virus that I’m required to get every six months. My monthly infusions carry a much greater risk of me getting a fatal brain disease, PML, if I test positive for the JC virus, so that’s why we do this. Only I had the test done last month, and they screwed up the order so I need to go back and try again. I’m super grateful I’ve remained JC negative after all these years on the medication (Tysabri) and am praying I continue to stay that way.
In other news, Christmas is coming. Have you heard? My kids have both issued their wish lists (at my urgent insistence) and my sister is taking me shopping this week so hopefully we can find some things on the list. I’ve already been able to do some shopping online but a lot of items are better found in stores, and that’s something I need assistance with. We started this shopping tradition a couple years ago and we had such a great time, we decided to keep doing it each year. It’s a drive for my sister to come up to where I live, but it’s a huge help to me. I’m grateful for her help in finding things and for her patience when I’m not 100% clear on what it is I’m looking for. It will be an exhausting day but productive and memorable, I’m sure.
That about sums up my day. I’m hoping to sleep decently tonight. The last couple nights I’ve been waking up with night sweats, and that’s no fun. Hormones are a hoot.
Daily Post #3 – December 7, 2024
Long and crazy day. The original plan was for the whole family to go pick out and cut down this year’s Christmas tree. And that was going to be it, a nice relaxing day.
We ended up doing a lot more than that. To start off, a friend texted first thing in the morning inviting me to join her at the gym. I said absolutely yes, since I had missed the day before and had been itching to go back. I got reacquainted with the elliptical – I hadn’t used one in over 15 years, when I was pregnant with my daughter – and learned very quickly that the elliptical is an efficient way to work out the upper leg muscles. OOF! I’ll definitely be coming back to those. Then, with jell-o legs we went over to the 30 minute circuit and got full body strength workouts in. I was so exhausted after but it felt really good to be moving my body again. And, it’s a nice change-up from running, which can get dull at times. We finished at the gym with chair massages and then went for coffee to do some real catching up. It was a fine morning.
Once home and showered, I went with Mike and the kids – and Punky! – to pick out our Christmas tree. That was a blast, as always. It’s a nice tradition we’ve kept through the years and I will miss it when it’s gone.
So with the tree procured and placed in the living room, we decided to head back out for a special mission. My daughter’s cell phone was broken and needing replacement. Since we all have had our phones awhile and are outside of the contract, we figured now we be a good time to shop for new cell phones/plans. So we spent the entire afternoon driving to various service centers, price shopping. We finally settled on one, and tried to get it all set up, but ran into a snafu so we’re hoping to get that completed in the next day or so. Oddly enough, none of us got frustrated with each other during this whole ordeal. We actually just enjoyed hanging out together. I was extremely grateful for that. And!! For a good portion of the outing my daughter drove! She just recently got her learner’s permit so she’s learning. She kind of hates it, it really stresses her out, but I think she’s doing a great job and will hate it less as she gets more practice.
All in all, it was a pretty incredible day and I’m so thankful for my friends and family, and thankful to have a warm bed to come home to. I’ll be sleeping well tonight.
Some Friday Ramblings
**Note, I started this post several days ago and didn’t finish it. I just didn’t feel like I was writing the way that I used to, or would like to, or “should”. All kinds of silly reasons to abandon a post, but whatever. I’ve been trying to hop back into the art of writing that I have loved, on and off, my entire life. After completing that marathon I was exhausted in so many ways and then lots was happening here at home that required my energy and attention, and then Thanksgiving, and on and on with the reasons/excuses for my absence here. I really desire to get back to regular blogging, regular writing. Lots of changes have happened with me over the last two years so I’m hoping “Writing Mel” is still alive here. I believe she is, and we are just dusting her off a bit. Bear with me, por favor. Gracias. Now back to the original post.**
I noticed when I logged onto WordPress today that they had a writing prompt; the question was “what will your life look like in three years?”. Which is interesting to me, because I was just hopping on here to tell you about a discussion I had with my husband recently that was along these lines. We were basically discussing whether we were content with our lives. And if asked that question, I would say that absolutely, I am content. However, if you had asked me 15 years ago if I would have chosen this life for myself, the answer would have been “hell, no.” I would never have chosen to be disabled and unable to work a job. Having multiple sclerosis, being deaf *and* half-blind, simply put – SUCKS. But I’m 10 years into this, and while it’s taken time, I’ve slowly learned to see (not literally, unfortunately lol) and be thankful for the benefits that have come from it. I’ve learned from these struggles. They have made me who I am today, and I love who that is.
I feel like I’m coming into a new season of life. I’m done training for marathons (for the next few years, at least). My kids are teenagers and can feed themselves (and prefer to, actually). The dogs are pretty low maintenance. So now I’m at a point where I’m learning how to rest. I’m learning how to be okay with sitting still. For as long as I can remember, I have had trouble with sitting still. Not that I physically can’t, but that when I do, there is a general unease felt underneath my skin and deep in my spirit. Like I’m “supposed” to be doing something. I’m often noticing my shoulders are hunched up and I need to consciously pull them back down.
I was actually discussing this general unease with a friend the other day, and she expressed how completely opposite she was from me in this regard, and we had a laugh. She seemed like she was saying she rests too much, and finds herself procrastinating. Sounds a bit like we would do well if we came more to the other’s side and met in the middle. But then where would be the fun in that? I love the variety I see in all of my friends and family members. It’s funny to me the things we experience and think are normal for everybody, when really we are all so different in so many ways. It makes life a lot more interesting, and brings us closer together as we support each other in our areas of strength and weakness.
So back to the season of rest. That’s where I am currently. I still have an ongoing list in my head of all the things I want to *do*, but I’m trying to be more kind to myself. While I’ll never regret running that second marathon, I will admit that I made the commitment without full consideration of my limits; physically, mentally, emotionally. So you could say I’m taking a break. Ish. A semi-break. Evaluating what I value most, and then easing those things back in. It feels a little like riding an inner tube on a lazy river. I’m enjoying it so far.
And that, my friends, is a little taste for you of the rambling that goes on in my brain on the daily. You are welcome. See you next time.
Wake up, Mindy
A fascinating part of this story of my plunge into disability is that for almost a full two months I was sleeping close to twenty hours a day. That seems to fascinate the people who hear about it after the fact. For the friends and family who lived it, it was terrifying. And for me, well, I don’t remember much so you could say it was sort of a blur.
I’m told a lot of things happened. There were times I was sleeping in bed or on the couch. Other times I was falling asleep at the dinner table. One time I was actually falling asleep while walking through Office Max with a friend. At least, that’s what I was told. I sort of wish I had that on video.
I know I spent a lot of time in the hospital for monitoring and testing. I remember getting a spinal tap, a CAT scan, and numerous middle of the night blood draws. There was one particular night I woke up to half of my extended family sitting around the room with me. My aunt and uncle from Georgia, my cousin from Grand Haven, and perhaps my grandma and grandpa as well. These were all people who were following the progress updates being posted on Facebook and who sacrificed to be with me, to make sure I knew they were all in my corner. I’m really grateful I was awake enough to remember their visit.
I had to take a visual field test at the neuro-ophthalmologist’s office to gauge what I could actually see. This is a pretty standard test where you sit with one eye covered and stare into a machine. You stare at the light in the center of the screen and click a button whenever you see a blinking light in your periphery. I’ve taken this test numerous times since, but this first time was the worst. If it was a pass or fail test, you could say I failed. I could not stay awake. It didn’t help that the room had to be dark for the duration of the test. It’s maybe a five or ten minute test and they kept having to stop the test to wake me up again. Over and over and over. It’s comical now, but it was pretty scary then. I vaguely remember this first test but I had no idea I had been falling asleep so frequently.
I slept through most of my daughter’s 4th birthday party. I remember bits of pieces of that event but only after I was shown videos and photos showing that I was there. I cried watching the video because I didn’t even feel like I knew who I was looking at. It felt like sort of an out of body experience. It breaks my heart a little to realize how absent I was for so much of my children’s everyday lives during this period. I can never get that back but you better believe I’m doing everything I can now to make up for it. I have asked my daughter over the years if she remembers me before I was deaf and she always says she can’t. She does remember thinking she had caused my hearing loss because she had been making too much noise. She was only four years old. You know?! See, now your heart is breaking too.
I also remember Thanksgiving that year. It was the only year within the past decade I didn’t host. Because of course, I was checked out. This made me sad but I was grateful that my husband’s grandparents were willing to fill in and host at their house. I went with no expectations and I was happy to be with loved ones. But when I sat down at the dinner table, I looked down and could not decipher what was on the plate. See, my visual impairment also includes some atypical color blindness, making it difficult to identify anything with bland, muted, or similar coloring. I looked around the table at all the smiling faces as people chatted in silence over their meals. It was just too much. I was there, but I was still missing it. My favorite holiday. With tears spilling over my face, I ran to the bathroom. I was able to calm myself down but I didn’t want to face the family with this red, splotchy, sad face. I cleaned myself up and returned to the table, apologizing for my abrupt exit. I certainly didn’t want to ruin everyone else’s Thanksgiving. And then my daughter Natalie reached over and hugged me. Because God speaks love and grace through four year olds. Of that I am certain.
So that’s how I spent October and most of November. In a dazed, trance like state. I was never left alone. I had a friend who came and stayed at the house with me every weekday while she home-schooled her children. She made sure I was fed and that I took my medications. She even helped with housework quite a bit and kept me engaged as much as possible. When I was too afraid to do normal things like showering, she never laughed or pitied me. She somehow understood the state of fear I was in and rather than scoff at me, she gently encouraged me to take everything one small step at a time.
When I was too afraid to cut an apple for fear of slicing my hand, she told me she believed I could do it and looked forward to the day I would have the courage to try again. So when that day came, I didn’t tell her what I was doing. I just slowly sliced that apple, artfully laid the slices out on a plate and walked up to the dining room table with a proud smile on my face. She smiled back with tears in her eyes (I imagine) and gave me a big mama hug. Cutting that apple was the first big step for me on the long and arduous path of healing and rehabilitation. I still had a long way to go, but that small but meaningful victory over slicing an apple gave me the courage and confidence to keep going, one tiny step at a time.
A New Puppy
Meet Punky. She’s a 9 week old golden retriever. We adopted her last Friday and she very quickly stole our hearts. It took us several days to agree on a name. Dad wanted Biggie. Daughter wanted Bailey, so we called her that for awhile, until we learned how common that name already was. I wanted Stevie (Fleetwood Mac, Schitt’s Creek) but noone seemed to like that one. We remembered the golden retriever on the show Punky Brewster, and thought Punky would be a suitable name (Brandon was the name of the dog on the show. Sandy was the actual dog’s name, if you wanna go super nerdy.) It’s taking some practice to get the name right but I’m pretty sure we’re sticking with Punky.
Her big sister, Piper, is not so thrilled about this development. It’s not that she’s intimated by Punky’s energy, because Piper has puppy level energy even at age 7. I think what she dislikes is the invasion of her space. This whole house has her name written all over it, and she does not want to share it. Typical only child syndrome. She will adjust. I’m noticing subtle changes in her daily, so I know she’ll get there. Eventually.
This picture above was taken by Grandma on the third day she was home with us, so she was still super chill and snuggly. It has now been a week and she is still chill and snuggly, but far more energetic and playful. My next post will likely discuss my sudden remembrance of the exhaustion involved with raising new creatures (puppies, babies, kittens, etc.).
I know I’ve not been posting a lot here but I hope to get back to some more regular updates, so stick around. And Happy Holidays!
Running With Dogs
I’m seriously not trying to draw pictures when I run, but this map looks like the profile of a dog. Do you see it? The pointy little ears and turned up nose?
But! What’s even cooler is that this was my fastest 3 miles, and that was even while running with Piper for the first mile. I’ve been secretly hoping to run a PR at the Turkey Trot on Thursday and I’m starting to really believe it’s possible! My current 5k PR is 38:24 and I would LOVE to come in under that and then go home and chow down on Grandma’s homemade stuffing and corn casserole.
What are you doing for Thanksgiving?
I’ve been crocheting
I’ve been busy, but not really busy. What I’ve been busy NOT really doing, is all the things I want to do, like taking care of our home and writing my book. What I’ve been doing instead is playing Farmville. And crocheting. But at least the crocheting serves a good purpose. See, I’m making hats with all the leftover yarn in my possession, and I plan to give them to the cancer center where I get my monthly infusions. I noticed this last infusion that they had a bunch laid out for people to take and when I asked about them they said they were from volunteers, and they can always use more so they would be happy to have me donate. Hats are fun because you can play around with different patterns and if you don’t like it, you know quick enough and you can just undo and start again with a different pattern. And I’m so thrilled I found a place to make them for. I love crocheting, it’s like therapy for me, and even better if it’s going toward a good cause.
I went for a run yesterday after a sort of long hiatus and it felt really good. I need to get better at running on a regular basis. A friend and I are planning to run a half marathon together next fall so I have something to work towards. I think she’s been a lot more disciplined than I am at the training, and she has five kids! So I have literally zero valid excuses. Unless you count the MS, but I don’t ever like to give it that much credit. There may be some day down the road MS decides to take away my ability to run, but until then, I need to do it. Because I can. And because it’s good for my physical and mental health.
As for the book, I am still writing it and I suppose you could say I’ve made good progress, but I kind of got stuck. I don’t know where to go next. So I’m giving it time and praying that I get some more inspiration to write more. There’s no question I have a lot to say, and the story I’m ultimately trying to tell has lots of details. It’s just that my mind doesn’t work as well as it used to and it’s hard to make connections. Disjointed, I suppose is the best description of my cache of memories. I’ll get there though. I’m persistent and stubborn and I refuse to give up.
So we are in December, folks! Did you know? Which means Christmas and time with family, and snow. We’ve purchased all our gifts for the kids via mail order (hello Amazon Prime!), and I believe most of them have arrived, so I think I might wrap them up early so I don’t feel like I have to rush to do it at the last minute. Plus I love the look of wrapped presents. We tried not to go overboard with the kids this year, but I’m still excited for Christmas morning. We all understand and recognize that Christmas is all about celebrating Jesus, but we are still human and enjoy seeing our kids light up when they open their presents. I kind of feel like God has a similar sense of joy when He gives us good gifts. Maybe. I’ll have to ask Him some day.
What else? I’ve still been baking cookies. It’s been a lot of fun to get that love back, and I have a lot of people around who love cookies and can appreciate them. I’m a one trick pony with the chocolate chip though. I tried to make something else and it totally flopped. Tasted fine, but didn’t set up like they were supposed to. So, kind of a literal flop. But I suppose cookies don’t really have to look good as long as they taste amazing, right? It’s all about the flavor. I’ve got that awesome vanilla from Mexico and dark chocolate chips so I’m due for another batch or three in the next few days. Come on over! I’ll make cookies and coffee!
Victories over anxiety
I’ve struggled with extreme anxiety for the last several years but I had a breakthrough and I thought I would share it here. Yesterday was Halloween, so we had a couple families from church joining us for trick-or-treating. They live out in the country just a few miles west of us, and we are in your typical neighborhood with lots of kids and plenty of free candy to be grabbed. So around 5:30, a half hour before go-time, I was putting out snacks for our guests and grilling cheese sandwiches for the family. Our friends and their kids started showing up while I was cooking, and here’s where I noticed the difference. In hindsight, of course. After it was all over, I realized that through all that noise and chaos I remained calm, without even having to tell myself to. And not just calm, but actually enjoying having everyone there! The kids had a fantastic time, the weather was perfect, and the night felt like a true success all around.
Those who know me best know this is a huge thing for me. I’ve had some pretty big struggles with chaotic situations, leading to crying fits and panic attacks. But for the past year I’ve been on a low dose of medication and I’ve been practicing breathing techniques and really evaluating my thought processes every time anxiety rears its ugly head. And last night showed me that all of this has been working!
So that has me a little bit on cloud nine. The downside – cuz sometimes there has to be a downside – is that I must have overdone it yesterday, because I’m in a lot of pain today. It started last night with my left calf and foot, and today it has spread all the way up my leg and jumped up to my left arm. It’s a dull throbbing deep in the muscle tissue that I can only assume is nerve pain, so I’m praying a good night’s rest will make it go away. If not, I’m hoping a quick morning run will help get all those muscles stretched out and warmed up.
I can’t believe it’s only Thursday. All day I kept thinking it was Friday. Because I’m done with this week. Done, I tell ya. Stick a fork in me, I’m done!
The light in the darkness
It’s Christmas Eve, and we’re all ready for Christmas morning with the kids. Breakfast fixings are ready in the fridge, gifts are surrounding the tree.
We went to church tonight and were reminded that Jesus came to be a light in the darkness. Then we drove around looking at Christmas lights, a tradition we’ve been doing since before the kids were even born.
And do you know, my 9 year old son made the connection between the sermon at church (which I thought he was sleeping through) and the decorative lights everyone puts up at Christmas? I don’t know for certain the origin of Christmas lights, but I think my son might be on to something. The lights we put up at Christmas are a representation, a reminder, that Jesus is the light in the darkness. That just blew my mind, to hear something so wise coming from his mouth. I was pretty impressed. And for sure, I will remember that connection and from now on our annual tradition of driving around looking at lights will hold much greater meaning for me.
Merry Christmas, and may you find the light in the darkness.
Little M.S. Runner 