Category Archives: Movies

Infusion day

I’ve been a little nervous about this upcoming infusion, as so much has changed from 4 weeks ago. We are now under a shelter in place order to stop the spread of the coronavirus. Essential workers and activities are still allowed, but people everywhere are taking all the advised precautions. I’m wearing a hand-sewn paisley face mask a dear friend dropped off for me last week, as well as a pair of latex gloves.

My pretty paisley mask

My husband dropped me off, and we tossed virtual kisses at each other as I got out of the truck. I walked into the cancer center, where my infusion center is held on the 2nd floor. In the entrance area, between two sets of automatic double doors, a man is sitting on a bench, wearing a face mask. I walk through the interior double doors and I’m summoned to a Purell stand and asked to sanitize the latex gloves I’m wearing. The woman at the station then asks where I’m headed. When I tell her the infusion center, she informs me that they have their own procedures and will ask me the necessary questions and check my temperature. I’m wondering if she can read my timid hesitation and confusion through my half-covered face.

I took the elevator this time, to get to the second floor. I usually take the stairs, but I still have poor balance and wanted to avoid needing to touch the handrail, even though I was wearing gloves.

On the second floor there are two women blocking the check in area. They are standing at makeshift stations, tall, round tables holding boxes of face masks. Each table is proceeded by a line of red tape on the carpet several feet away. This is where I’m asked politely to stand. Everyone is wearing a white face mask. I wait patiently for my turn.

When it’s my turn I’m instructed to remove the mask I’m wearing and put on the mask they have provided. They said I could wear my mask over the white mask if I wanted, but I declined and put it in my purse. I’ll save it for another day. I’m asked a series of questions and my temperature is taken, and the woman signs the form for me. So I don’t have to touch anything.

Once I’m cleared they tell me to stand at a red paper square on the floor, several feet ahead. I walk over and wait to be called but it’s tricky because the masks muffle all the sound and I can’t read lips that are covered, obviously. I forget how much lipreading plays a part in my speech comprehension.

A woman far ahead looks in my direction and points at me, because it seemed clear to her I wasn’t getting the message to come over to her desk. She checks me in, quickly, puts an ID bracelet on my wrist, and then I’m sent over to the waiting area. I find a seat away from other patients, breathe deeply, and wait.

When my intake nurse comes through the doors ahead, she sees me immediately and I can tell from her eyes that she’s smiling. As we walk back to my corner station, she mentions that it’s probably hard for me with all these masks on. She remembers me well; I’m a regular at this place. I say yes, that I forget how much I use lipreading until it’s not available anymore. It’s not impossible to understand, just a little more challenging than normal. Nothing I can’t deal with.

To be perfectly honest, the rest of the infusion went just as usual. It was a bit strange to see everyone walking around with face masks on, but I didn’t feel a heightened sense of dread or anything. It felt like business as usual for everyone. For all the nurses and staff, this has become their new normal (for now, at least) and they are well adjusted to it. Once I was sitting in my infusion chair, I felt completely at ease and had no reason to be fearful. And once I had my mask on properly, it was actually quite comfortable to wear. To quote the Dread Pirate Roberts, “I think everyone will be wearing them in the future.”

Waiting for the crash

Last night I stayed up way too late watching Pretty Woman on tv. Because I don’t know why. Because I had recorded it, and then started watching it not being entirely aware of the time, and then not being able to turn it off in the middle. Because you’ve gotta finish what you’ve started, right? I won’t get started on what a classic, feel good movie that is. It just is for me, and I don’t care if you judge me for it. Julia Roberts is just genius in that role. That’s all.

Anyway, so I was up way too late, and then had to get up early this morning to wake my daughter to get ready for the second day of horse camp. Then, even though I kept telling myself I was going to go back to bed, I just sort of kept moving on with my day. Luke and I rode bikes to get lunch at Taco Bell, my vitamins from Rite-Aid, and then ice cream at Sweet Sensations. It was a great afternoon, and then I thought maybe I would catch a nap before Natalie got home from camp, but I just, well, didn’t. Then I made dinner for the family and now I’m sitting here wondering when I’m going to hit that wall of fatigue. Yet, it just doesn’t seem to be coming. Hallelujah, praise the Lord, I’m operating like a normal healthy person!

This may be the healthiest I have ever felt. I don’t even remember having this kind of energy when I was in my twenties. I’m sure I did, I just don’t remember it, ha! So I’m writing this down so that I can remember how I feel and perhaps what I’m doing to feel so good. I believe it’s all the healthy things combined that work together to allow my body to operate at its best. Staying active with running, cycling, and walking. Eating my fruits and veggies, taking my greens daily, drinking lots of water. Even the celery juice I’ve been drinking every morning seems to be having a positive effect on my sleep quality, somehow. I know the celery juice is a fad right now, but you never know, this might be one that sticks. We shall see. But all the exercise and the healthy eating (with itty bitty cheats here and there) is really working.

The best part about feeling good is that I am feeling confident about the upcoming commitments I’ve made: leading a bible study, a discipleship group, and a Financial Peace class. I’m not afraid that it will be more than I can handle, or be too much to take on as a person living with MS. I do realize that none of this healthy living makes me immune to a relapse, so I’m keeping a level head about that, but I’m praying that all this healthy stuff I’m doing will make a relapse far less likely. I’ve always said I don’t want to let fear drive my decisions, and that applies here. I can’t say no to these exciting opportunities to serve God for fear that I’ll relapse. I’m trusting that He’s the one that gave me these desires and that He’s leading me down these paths, and if that’s true, He’ll take care of the details. M.S. is no match for my God!

Umm… I blame the heat

I know, I’ve been a stranger. WordPress keeps reminding me I haven’t posted in awhile. But dang it all, it’s just been so hot and that seems to suck all the life right out of me. Even when I stay indoors with the air conditioning as much as possible. I feel like Westley in the torture chamber with Count Rugen – “I’ve just sucked one year of your life away. ” That’s a Princess Bride reference, for those of you who haven’t had the privilege of seeing my all-time favorite movie. If you haven’t seen it, I can’t help you. I just can’t.

But back to what I was saying. Life. Sucking. Heat. It drains me. Fatigues me. And makes me feel generally ill. Every time I go out in the heat for even a few minutes, and before I even realize it, I’m overheating. I can cool off easily enough and get some relief, but it still leaves me drained of all energy. So I decided to take my neurologist’s suggestion and a buy a type of cooling vest designed for people with MS. I actually bought something more than a vest – it’s a whole set of cooling products: a scarf, a torso wrap, and bra coolers (eek!). They work really well, and I’m happy with my purchase. Just another weapon to add to my MS arsenal.

I did some really fun things in the past few weeks, and I hope to reflect on them this week and share with you here on the blog. But not tonight, because it’s late, and all I’m really up for is reading or continuing my binge watching of The Gilmore Girls on Netflix. A girl’s gotta have her priorities, right?

I’m not dead! I’m getting better! I think I’ll go for a walk…

That title is a Monty Python and the Holy Grail quote for those in the know… best read out loud with a British accent.

It’s true! I’m still here! Blog still somewhat active! The irony here, folks, is that when there is much going on and much to tell, there isn’t much time to sit down and write about it. But that time is coming. In fact, it’s kind of here, and as soon as the dust settles, I’m sure you’ll be hearing more from me.

Our little family of four (plus the dog) is happy and healthy. It’s beautiful and amazing and I am so thankful. However, I am surrounded by friends and family who are struggling in a variety of ways; sickness, disease, financial struggles, you name it. And seriously, my heart is aching for every single one of them. I am overwhelmed with a desire to help, now that I am awake enough to be aware of others’ needs. That fog has lifted from my internal/mental space. I am free to be aware. Which is a gift, yes, but with my limitations I don’t know HOW to help, other than to pray. So I pray, a lot, and I reach out as much as possible, because I know when I was struggling it meant the world to me when people did that. A note here, a message there, it all made such a difference. People say that it’s the thought that counts, but that’s not true. Unless the thought leads to action – great or small – it means nothing. But those actions do mean a great deal, no matter how small we think they are.

So that’s all I have for today, and I realize it’s a bit of a cheat, but oh well. Life goes on. Ob-la-di, ob-la-da.

Wait, before I go, can I challenge you all to something today? Turn your thoughts into actions. The positive ones, of course. If you think about doing something nice, DO IT. Be kind and courageous. I dare you!

Movie night for the win

I had a crazy busy day, and now the house is a disaster. Well, a disaster in the same way last week’s thunderstorm was a hurricane. There are still traces from last night’s dinner in the kitchen, floors have attracted various debris from the weather outside, and laundry is, well, always in progress. But I was home alone with the kids tonight, and I didn’t want to spend it cleaning. I wanted to spend it with them. So I did. We snacked and talked and then we snuggled up on the couch and watched Toy Story 2, right up to the very end. I can’t remember the last time we’ve all watched a movie from start to finish with no interruptions, and with no electronics stealing our attention. It was beautiful.

And now they are in bed, well past each of their bedtimes, and I sit. Writing and reading. Not cleaning the house out of some neurotic obsession. I think that’s a good sign, right? That I’m not TOO obsessive? That I can draw a line somewhere, and be realistic about what matters and what doesn’t? After all, (paraphrased from the best movie quote of the night) “I can’t stop [them] from growing up, but I wouldn’t miss it for the world.”