I’ve had lots going on over here in real life. Too busy and too exhausted to blog about it, but I thought I would check in real quick before I closed my eyes for the night. I realize how annoying that is when bloggers blog about how much they’re not blogging. I don’t care, I’m okay being the annoying one.

Things I’m excited about:

  1. I created a chore chart for the kids and it’s actually working
  2. I’m becoming a little less obsessed with what I eat
  3. I’m also pretty sure I’m becoming a vegetarian, and I’m learning to be okay with that
  4. My vision is improving and I’m done with the steroids
  5. Tomorrow I’m meeting with my favorite tattoo artist to talk about my next tattoo. Eeek!

So, you know, nothing crazy, nothing spectacular. But all good. I’ll take good all day long.

Angels Among Us

I’ve been doing fairly well this week, dealing with this relapse with my vision and the steroid treatments. However, Friday afternoon I was approaching a meltdown. I was sitting at the kitchen table when it occurred to me that I was experiencing the dreaded MS hug. The MS hug is a neurological symptom experienced by many of us MSers. It feels, to me at least, as if I am wearing a super tight corset, and someone is pulling the strings tighter and tighter around my ribcage. It’s not dangerous or life-threatening in any way, but it can be painful. At a minimum, it’s extremely uncomfortable.

I think what bothered me about this the most is that I hadn’t experienced it in many years, and I felt that since I am currently treating a relapse, that I shouldn’t be experiencing any worsening symptoms. So, I was understandably freaked out. Knowing that I was probably overreacting, I called my mom so she could talk some sense into me. And that she did. While I freaked out, she reassuringly talked me off the ledge, consulting Dr. Google at the same time (she’s the ultimate multi-tasker), and gave me some guidance. We ended the call with a plan for me to take a warm Epsom salt bath, take a Gabapentin (the drug I take for the occasional fiery nerve pain in my feet and thankfully have plenty of), and watch a happy chick flick on Netflix. Oh, and we did a fair amount of Skyping while she helped me pick a movie to watch (I went with her suggestion of Under the Tuscan Sun). At the tail end of the call she showed me a great view of the Oklahoma sunset from her backyard. It was truly breathtaking, and left me speechless..

That sunset was the first of several ways God would speak to my heart, comforting me in very personal ways, letting me know that I am still never alone, never as long as I have HIM.

I woke up Saturday morning to a message from one of my very best friends, one whom I had purposely kept from reaching out to for help this week because she is recovering from a major surgery and I didn’t want to burden her further. It sounds so ridiculous in hindsight, and she would tell me that, I’m sure. Her message was so short and sweet, it cut right to my heart: “Love you. Miss you. And prayers for comfort.” And again I was left speechless. How could she have known how much I needed that? She couldn’t have. That’s all God right there. Grace.

One more though – ou all know I love checking the mail, right? Today my son beat me to it, so I didn’t get to run out to the mailbox like Blue, but when he handed me the mail, with a card addressed to me, I got just as giddy. A handwritten greeting card, from a familiar name. This was sent from a woman from my hometown. She knew me when I was in high school and she reads my blog. She wrote a beautiful note to encourage me and let me know she is always praying for me. I think she must have read the post about checking the mail and gotten my mailing address from my sister. But again, she couldn’t have known how much I was going to need that when she mailed it. But God must have stirred her heart to send me that note, and she took action, and my heart was comforted once again.

Guys, I believe in angels. I really do. And I believe God speaks to our hearts. I believe when we listen to that still, small voice and respond to it? We become God’s hands and feet. His angels here on earth. I have almost zero research to back any of that up, but I promise you with all my heart that it’s real to me. So you can take my word for it if you want, or you can try it on your own. Practice kindness and compassion. What can it hurt? At the very least you’ll brighten someone’s day.

Checking the mail

I look forward to getting the mail. Yep, I’m one of those people. I never used to be, but now that I’m stuck home most days, with not a lot to do other than boring domestic stuff like cooking and cleaning… well, sometimes it’s the most exciting time of my day. The sale ads come every Tuesday, and that’s fun to glance through casually before tossing them into the recycle bin. Most other days it’s the normal bills coming in, which I’m always happy to handle. I still love accounting, so balancing the checkbook and managing the budget makes me feel like I’m still using my skills.

This time of year is especially exciting because we have been receiving all the end-of-year tax forms. And I love preparing tax returns! I used to do it for others, as a side business, but can’t do it now due to my vision. There’s just too much room for error. If I screw up on my own return, no biggie, but screwing up on a client’s or friend’s return is just not cool.

So I’m raring and ready to go on our 2016 return, but we are missing two forms that had to be resent, so I’m anxiously waiting their arrival in the mailbox every day. I’m also waiting for my new handicap parking placard to arrive, since it’s expiring this year. Unfortunately, today was not the day for any of these items. Maybe tomorrow!

And now for your amusement, I’ll show you what my husband thinks of when he sees me run out and check the mailbox on a Saturday, when he’s actually home to see my excitement…


Follow up to the whiny post

I’m feeling a little bit less whiny… a teensy less. I did get my eyes checked, and they were worse, as I had suspected. So we postponed my Tysabri infusion and instead got me set up for three consecutive days of Solumedrol, a high dose steroid that is given intravenously. This is a common treatment for MS patients when they have flare-ups of symptoms. I’ve had them before, and I’ve always responded well. So I wasn’t too worried about the actual treatment, but I was pretty devastated to be back in this situation. The MS flare-up. I had been doing so well, for so long, that I believe I got too comfortable. So I wasn’t really ready for this. But I suppose you never really can be ready for this kind of thing. That’s the cruddy thing about this disease, it’s unpredictability. But, with lots of support from family and friends, we got through the infusion part. Now I’m just back at home, with my routines, and taking oral steroids (Prednisone) to taper down from the high dose infusions.

I’m not crazy about the side effects of Prednisone, but I guess it’s a necessary evil. I do feel like my vision has changed already. I noticed Monday it felt like my visual field had opened back up a bit, at least up close. I still have difficulty recognizing faces from far away. I’ll go back to the neuro-ophthalmologist on February 17 and we’ll see what progress I’ve made. I’m hopeful.

So that’s my update for now. The Prednisone has me kind of moody, so I realize I’m lacking any real spark, but I’ll get it back – I promise! 🙂

One big whiny post

Um… This week is starting out kind of rough. First of all, my monthly infusion is due, which means the last batch in my system is running out, which means I’m fatigued. I don’t know why it does this to me, because it certainly doesn’t flood me with energy when I get the infusion, but there’s no denying it. And knowing it’s coming doesn’t make it any easier. It still sucks, every time. It’s disruptive and discouraging and a constant reminder that yes, I am still disabled. The fatigue is debilitating, and there’s not much I can do to fight it. This angers me.

Also, I’ve been feeling lately, and especially yesterday, that my vision has grown worse. It’s so subtle that it’s hard to say for sure, but yesterday I was absolutely sure that the fog in my field of vision has closed in a bit more. This angers me too, and scares the effing poop out of me. I fear losing all my vision, I fear not being able to see my family’s smiling faces or the sun rising in the morning. There are so many beautiful things to see in this world and I don’t want to miss out on seeing any of them. 

So we are working on getting in to see my Neuro Ophthalmologist, and in the meantime I am trying ro enjoy what I still have and holding fast to my faith in Christ. He brought me through my darkest times and I don’t expect him to leave anytime soon.

The problem with all this, of course, is that life around here doesn’t stop to cater to my issues. The people still need to eat, laundry still needs to be washed, and the dog still needs oodles of attention. Last night my daughter spent the evening puking her guts out, and I was happy to clean up after her. Because I’ve got a tough gut and I can’t see the puke anyway. They point to where it lands, I take care of it. Cuz I’m still the mom, after all. And I’m thankful to still be able to be here for my kids, even with MS.

Some days (nay, weeks) I just don’t have the energy to be cheery in spite of the mess. This is one of those weeks. And it’s only Tuesday! Pray for my survival, would you please?

I think it’s called the heeby-jeebies

We stayed overnight at my mother-in-law’s house for Christmas, and the next morning she was showing me how to make biscuits. (My daughter was given a cookie cutter set for Christmas that included a biscuit cutter.) Well, I was excited to learn how to make biscuits, because I can really appreciate the quality of a fresh homemade biscuit – topped with homemade sausage gravy, of course. But then she started describing the part where you roll it in the flour or something, and that’s when she lost me. “Oh no, I can’t do this. I’m not gonna be able to make these.” I’m standing in the kitchen, trying my very best at hiding my discomfort, but ultimately giving up and just moving away.

I just can’t do flour. It makes a small sound when it touches things that only freaks like me can detect. It sends shivers running down my spine. Even the thought of the sound creeps me out. I don’t know why, but it does. It’s been like that for me for as long as I can remember. I met someone once who understood this, only it was not flour that got him – it was the color teal (The 80’s must have been torture for him). My dear mother-in-law, shocked into disbelief at my reaction, asked my husband, “Did you know about this?”

“Yep” he offers, “she also hates sand.” And chalk and powdered sugar. Oddly, the brown and white sugars don’t bother me too much. We’ll call those tolerable.

It’s funny that my mother-in-law has known me for 18 years and she’s just now hearing about this quirky aversion of mine. A well-kept secret, I suppose. I guess the cat’s out of the bag now. Just hopefully not the flour bag.

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.