Tag Archives: Multiple Sclerosis

Why the crockpot is my new best friend

This is not to diminish the value of my friendships with real people, because I have a lot of pretty amazing friends, but by golly, I am really loving my crockpot this year (I’ve had it a whopping 16). The internet holds a wealth of information and ideas for what you can make in these things, and I’m finding plenty of healthy, tasty meals.

But here’s why I’m really learning to love the crockpot – it allows me to work around my fatigue and still manage to feed my family. The fatigue that MS causes has really been kicking my butt hard this past month, and by 1 pm (even after a morning nap) I’m pretty slogged (not sure if that’s a word but it sounded good). By 4 or 5 pm, after getting the kids from the bus stop and handling the flurry of that excitement, I’m close to non-functioning. Which makes dinner prep rather difficult.

Case in point: It is almost 7 pm. We ate dinner already (tacos!!) but I’m feeling the munchies so I went into the kitchen to get a bowl of cereal (granola, actually). I pulled the granola from the cupboard, the milk from the fridge, and set both on the counter. I then got a bowl and poured the granola into it, and proceeded to put both the granola back in the cupboard and the milk back in the fridge.  Notice anything missing?? I walked all the way back to my bowl of granola, ready to eat, and discovered I had forgotten to pour the milk.

It’s really frustrating, feeling so… I don’t know, lacking in ability to perform simple tasks, I guess, and pretty damn powerless to change it. But I’ve been faced with lots of things, big things, that I cannot change. If I have learned anything from these big, unchangeable things, it’s that I do still have a choice. And that choice is to accept it, adapt, and move on.

The crockpot means I can prepare a delicious, healthy meal for my family early in the day, before I get fatigued. I refuse to give up and feed them frozen pizza every night. So, for what it represents and for what it allows me to do, the crockpot is my friend. The thing is old enough to drive now (a wedding gift), but I suppose using it for a ride to the store would be asking too much. We’ll just stick to food preparation for now 😉

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Painting

Oh my goodness. This past weekend was a whirlwind. Lots of fun activities going on. I can’t quite process it all. In fact, it has sort of left me in a State of Funk. (Also, I just finished reading The Giver, so I’m tempted to capitalize the Common Words. My apologies. Do you accept my apology, Giver Fans?)

Anyhoo, Saturday we went to Luke’s soccer game, and Grandpa took us out for lunch after. Natalie was wanting to do something special with me, so we went to this local “paint your own pottery” place called Playing Picasso. We had so much fun! Natalie was ecstatic, and had so much fun that she has decided she would like to have her 7th birthday party there (because her 6th is already planned). Of course she only gets one birthday per year, so she has the next three all planned out. This year is laser tag, next year pottery painting, and the year after that roller skating. Well, at least we have time to plan lol. Anyway, I really liked this place, and I’m already thinking I would like to come back on my own and paint some stuff. Maybe I’ll  even throw myself a party one of these times.

On a normal day, the pottery painting was A LOT of art for this girl here, but I didn’t stop there. No sirree, I had plans to go to Painting With a Twist with a friend that evening. This was a completely new experience for me, but I had heard from other people that it’s a lot of fun. They get 20 or so people set up at tables, with brushes and paint, and then an instructor guides everyone through painting a masterpiece. After 2 hours, you have 20 matching paintings (in theory) and they take a group photo while everyone stands proudly holding their finished paintings.

I was a little hesitant to do this, knowing I would have trouble seeing and hearing the instructor, but we had them place us right up front. This way we had a better chance at reading lips, and could readily ask questions as needed. I ended up asking a lot of questions, mostly relating to which color was which on my palette. My vision is bad, but not in the way most would think. I have a much smaller field of vision, but within that field I am able to see 20/20 with my left eye (20/40 with the right). Colors on the other hand, are hard to distinguish. So most of my questions were relating to the colors: which one is blue? Is this one green? Can you show me where I just painted the white circle? White on white is impossible for me to see, and that happened to be the first thing we did. Oh, I could have freaked out right there, but I decided not to. I was determined to have fun, no matter what, and that is exactly what I did. Even when I lost my balance trying to reach the top of my canvas and almost knocked over the entire effing table. Yes, I lost it. Fell right over onto the table. But I quickly recovered, exclaimed “oops, I forgot I have poor balance”, laughed at myself, and moved on.

At the end of the day, I went home with some fun memories and a painting that turned out to look pretty darn cool!

Painting With A Twist
Painting With A Twist

It may not seem like a big deal for most, but it was to me. I am still, two years later, adjusting to life with hearing and vision loss. I am almost daily faced with tasks that are new to me. New to the NEW Me, not the Old Me. And that can sometimes be a smidge frightening, but I am also daily making the decision to ignore that fear and just keep moving forward. Because today is a gift, and I refuse to waste it being afraid. Do you hear that? Life is a gift! Open that bad boy up!!

Catching my balance

I haven’t been blogging much lately, and I think it’s because I don’t think I have anything interesting *enough* to write about. But maybe that’s not for me to decide… maybe I just write what I want to write because it’s my blog (i.e. nobody is paying me to write it). How does that sound?

So here’s a snippet for today. This kind of thing happens to me on a regular basis; so regular that I usually forget about it each time and move on. I have MS, and with MS comes balance issues. Shortly after I was first diagnosed in 2009 a physical therapist caught me saying “I keep losing my balance” and he corrected me with this: “You caught your balance. You didn’t fall.” I thought this was a much more positive way to express what was happening, and I’ve used that phrase ever since. Now, sometimes I do actually lose my balance, and tumble to the floor, but that doesn’t happen nearly as often.

This morning I was heading to the living room with my cup of coffee and as I stepped into the room I decided to turn on the light, requiring me to reach ever so slightly to my left to flip the switch. That turned out to be too much movement on too short notice. My entire body started to wobble and sway and I could feel very quickly that I was about to go down. But just then I grabbed the wall with my left hand, held tight to the coffee in my right, and remained standing on my two feet!  I caught my balance (and only spilled a few drops of coffee)! Seriously, picture little ole me, casually walking along, stopping, turning to the left, then suddenly lurching side to side, forward and back, in a desperate attempt to stay vertical. I felt like I was dancing to ska music, but without all the legwork.

I found the whole thing to be quite comical, but since there was no one around to laugh with me, I am sharing it here with my readers 🙂 Have a beautiful day folks, and may you always keep your balance.

~WW

Weebles wobble but they don't fall down!
Weebles wobble but they don’t fall down!

Independence Day 2015

wpid-20150704_220508.jpgI had a weekend to remember. Yes, it was the Fourth of July, which has always been a favorite of mine, but this one was my best yet. The kids played, the husband caught up on yard work and relaxed, and I enjoyed being a part of it all.

Saturday we went up to “The Lake” with Grandpa, for dinner and fireworks. The Lake (which probably has a name, but I don’t know it) is actually man-made, with permanent campsites set up all around it. Grandpa’s friends have campers/cabins up there, so we go every year. It’s actually pretty cool. The people travel within the park by walking, biking, or driving golf carts. And you have to be 16 to drive a golf cart, but you are NOT required to have a driver’s license. I think. Anyway, golf carts don’t go very fast so they let me drive one! All the way around the lake! I was too nervous to do it alone so I had Mike riding shotgun, while the kids rode in the back. And it was wonderful. I haven’t driven in close to 2 years, and I really miss the independence of it, so this was a gift to me. To be in the driver’s seat, pushing the pedal, steering the wheel, with the wind in my hair and the sunshine on my face. In short, it made my day.

Actually, that’s not true. Although, if that’s all it was, it would have definitely made my day. But there’s more.

Natalie and I were at the camp playground, swinging on the swings, when Luke came running up to us and shouted, “They accepted it! They accepted our offer!” See, we had just put an offer on a new house and were still waiting to hear from the seller. Yup. We’re buying a new house, y’all. There are still some details to take care of, but my understanding is that it’s all normal stuff and shouldn’t cause any issues. We bought our current home from my mother-in-law, easy peasy, so this home buying process is new to us. However, we have been praying A LOT through every step of the way, and that has really made all the difference.

I’m excited about this house. We all are. It has a beautiful yard, with a deck, gazebo (great for shade!), a shed, and a firepit. The house is two-story, but the bedrooms and laundry are all on the same floor. If I have an MS relapse in the future and have trouble walking, there are bathrooms on every floor, so I’ll always be able to relieve myself. The stairs were definitely an issue we considered. We really thought hard and prayed about the stairs, because I do have MS, and there is always that possibility that one day my legs won’t work. But I really felt God telling me to trust Him, and not to make this decision out of fear. Mike agreed, so we went for it. The house is located in a fantastic school district, a great neighborhood, is still in the range of Spec-Tran (my ride service), and we discovered that some friends I used to volunteer with live just down the road! So I believe all of those positive attributes outweigh the “what-if” factor of my MS. This is going to be a good change for our family. A big change, but a good one.

Now we just need to sell the house we’re in, which will be another new adventure for us!

Trusting God’s Timing

Here’s what I love about God: He shows himself in the timing of things. I don’t even know if that’s Biblical, but it seems to happen for me. Maybe it’s just how He likes to communicate with us who are “type A” and live by their calendars. It certainly sends a clear message to me, that is for sure. April 13th, which was the day 2nd CI surgery was originally scheduled, means nothing to me. And when I was in that hospital bathroom to give them a second sample for testing, I was praying over that cup of pee. You can laugh at that – I did – but it’s true. I was praying that if the surgery was meant to be that day, that He would remove all infection from that cup. And with that prayer, I told God that either way, I was trusting in His timing, not mine.

Well, if you read my last post, you know what happened. It was not to be on April 13th. Much has transpired since that day, so let me try to break it down for you.

  1. The insurance approval was effective until May 10th, so the surgery was rescheduled for May 8th. My 1st CI was implanted on May 9th, 2014.
  2. My surgeon wants me to get another urinalysis done one week prior to the surgery.
  3. I have been taking Vitamin D supplements per my neurologist’s recommendation, and when I finish them I need to get new blood work. I take my last pill this week, which means I need to get the blood work done next week.
  4. My Tysabri infusions for MS are every 4 weeks, and my next one is due April 29th(next week).

What this means is that my infusion, blood work, and urinalysis, all have come due in the same week, the week prior to my 2nd CI surgery. A 2nd CI surgery that will come one year, almost to the day, after my 1st CI. And! All three procedures/tests can be done at the same building, which makes for seamless Spec-Tran ride scheduling.

All of these things, combined, make this Type-A girl’s heart happy, and assures me that God really is in control. Because I could not have planned it better myself.

Exodus 14:14 – “The Lord will fight for you. You need only to be still.”

Weekly update of sorts

I am in some super slow recovery type mode, so writing (book, blog, Facebook, journal) is not really happening. And that irritates me, but then I get irritated that I am so irritated. Vicious cycle. So today I am just going to bore you with this…

I had a rough walk to the bus stop this morning. I think the dog has gotten too big for me, and with her energy and drive, I can’t hold her back. She throws me off balance constantly. And with my balance issues, that’s a recipe for disaster. So I think we’re done with that program until she gets a little older and can be trained to behave better while walking. That is a thing with dog training, isn’t it?

So after the rough walk I put the pup back in her crate and went back to bed. The sleep probably helped, but I can’t tell. I’m still struggling with fatigue. However, I have managed to do the dishes and make dinner. Chili in the crockpot, and it smells delicious so far. Ground venison, onion, diced tomatoes, black beans, and chili powder. A simple recipe I don’t remember ever trying before, so I hope it turns out ok. We will have cheddar cheese, sour cream, and Fritos to top it off, so that can help with flavor. I thought about adding the can of spicy chili beans that has been in our cupboard forever, but the kids really don’t like spicy, and neither do I. We’ll see how the chili tastes in a couple hours, and I may still decide to add some.

I mailed an application today for the local public transportation service for disabled people. They drive the van right to your door and take you where you need to go. I’m excited about it. As my husband put it, it will give me a level of freedom back. I wouldn’t need to rely on him to take me grocery shopping, or to my umpteen doctor visits. It’s hard to describe how helpless it makes me feel, not being able to drive. I don’t miss the driving so much as I miss being able to go where I want to go. I am an introvert, so one of my favorite things is to go do things alone. Sit at the coffee shop and read or crochet, walk around a bookstore or mall just to browse the merchandise. But if you always need a driver, someone is always waiting for you, and that’s pressure I don’t handle so well. I HATE feeling rushed.

But this Spec-Tran, you plan each ride one-way, so no one is waiting. You tell them when you need a ride back, and they’ll send another driver. At least that’s my understanding. We’ll see how it actually works, but regardless there is no cause for guilt because this is their job, and they aren’t just doing it out of the kindness of their heart. Why is it that we feel guilt when someone does something for us out of the “kindness of their heart”? I mean, by definition they are doing it because they want to, not because they feel obligated. I know it’s not just me. But that still doesn’t make it rational or right.

Oh well. I declare that today is not a day for solving things. It’s a day for reflecting briefly and moving on! Coffee is waiting!

Add blood disease to the list…

I’ve been really tired lately. For the past couple of months, actually. I just kind of assumed it was circumstancial, or due to the m.s., or a combination of both. It would make sense. Fatigue and balance issues are par for the course with m.s., and we have the new puppy, and we’ve had lots of travelling and family events with the holiday.  So I had been telling myself that’s what it was, and it would ease up.

Only it wasn’t easing up, and I was starting to get very discouraged. I just couldn’t get back to that place of feeling like you have sufficient energy to move. And no amount of caffeine or sleeping seemed to help.

I went to see a new neurologist yesterday, and shared all of my concerns with her. She said I’m doing all the right things (though I am under orders to stop climbing on chairs) and I’m on the best m.s. treatment with my monthly Tysabri infusions. She ordered a gang of blood tests, since I hadn’t had one in quite some time.

She called this morning with some of my test results (while we were at the pediatrician with my son, who has been complaining of headaches and was up last night with headaches and vomiting. She was still waiting on further test results, but the one she was most concerned with was my vitamin b levels (or hemoglobin, or something). Whatever “they” are, they should be at 12. Mine are at 8, which means I am very anemic. Their words, not mine. The lucky thing is that my primary, who my neurologist was advising me to see regarding the anemia, is located on the second floor of the building my children’s pediatrician is in. So Mike called to see if they could see me right then and they were able to! So I left Mike with Luke and took the elevator to the 2nd floor. The primary doctor ordered more blood testing to get a better sense of what might be causing the anemia, prescribed some iron pills, and is setting me up to see a hematologist.

What FUN. After everything I went through last year with the trip to Mayo Clinic, hospital stays, plasmapheresis, etc., I was really hoping for some time off from doctors and testing. That’s clearly not happening.

I’m not exactly looking forward to more medical drama – not to mention the frustration and guilt I feel for needing my husband to take time off work to drive me everywhere – but I am somewhat relieved to learn that I wasn’t just making this up. I wasn’t just becoming a lazy person. There is a reason for this fatigue, and the headaches and dizzy spells. More importantly, there are solutions. Before today I didn’t know the first thing about anemia, but I know now that it is treatable, and depending on the cause, can sometimes even be reversed. That’s a hell of a lot more than I can say for multiple sclerosis. And compared to all of the mess I’ve been through with m.s. for the last 5 years, and the mess I go through daily with hearing loss, anemia looks like a walk in the park.

Now I just have to find the park!