Plenty to Be Thankful for

We had a wonderful Thanksgiving here. As usual, there was way too much food for one meal. On a regular day, I cook to feed an army. But for Thanksgiving, I cook to feed an army and a navy. Maybe for a few Marines, too, for good measure.

There were 6 of us for dinner, and later on, 10 of us for dessert. The house was full of laughter and food.

I made pies on Wednesday. Pumpkin, apple, and lemon meringue were on the agenda. I knew it was going to take me longer than I'm used to, but seriously, it took me all day long. All day, to make five easy pies. I managed to get the pumpkin pies made while the kids were in school. I made the lemon meringue pies after the kids got home from school (my daughter made the lemon filling), and I made the apple pie after dinner (my daughter helped me peel the apples).

I try really hard not to get angry and frustrated with myself when it comes to my limitations, but on Wednesday, I couldn't help it. I kept telling myself to get moving; there was a lot to do. I wanted to make the stuffing Wednesday night and find my table linens, so basically all I had to do was stuff the turkey and peel potatoes on Thursday.

Well, by the time I finished all the pies and they were cool enough to put into the refrigerator, I had to play refrigerator Tetris to find room for them. Once I had them in the refrigerator, I was spent. All I wanted to do was go to bed. I chastised myself all the way up the stairs for not making the stuffing, or finding my linens.

So there I was Thursday morning, making the stuffing and looking for the linens I wanted to use. By the time I was finished, I had mostly forgiven myself for “slacking off” the day before. My daughter was really a big help on Thanksgiving. She made another apple pie (with very little supervision from me), she stuffed the turkey, she helped peel both kinds of potatoes, and she mashed both kinds of potatoes.

The cooking is going fairly smoothly, and even the end rush to get the food to the table isn't too bad. As I'm ladling the gravy into the gravy boat, my hand forgets it's attached to my arm. The hand drops the half-full gravy boat, landing into the pan of gravy, but not before boiling hot gravy splashes onto my hand. The good thing is that when the gravy boat fell into the pan of gravy, it didn't break. Double bonus because a) if it broke, it would have ruined the gravy, and b) I like that gravy boat. I got it years ago at a Noritake outlet in Indiana.

I was envisioning a trip the ER, the pain was so intense at first. I rinsed the gravy off with cold water, took some ibuprofen, and got an ice pack from the freezer. I ate dinner holding the ice pack.

The other good thing is that my injury exempted me from clean up duty.

By the time we were ready for dessert, my hand was basically fine; it wasn't even red anymore. Now, a few days later, it's totally fine. No hint of pink or red anywhere, and no sensitivity to temperature.

I am really lucky I wasn't burned; I know this. All I can think of is that it was divine intervention that I finished the night at home, with very little discomfort, and not in the ER.

Happy Thanksgiving

Wishing you a wonderful Thanksgiving!

Making Food, Making Memories

My son had a friend sleep over the other night. When morning came, my son asked if he could make pancakes. I said sure, and I got up to help him. He said that he wanted to do it so I sat down to finish my coffee.

I have pancakes in the freezer and pancake mix in the cupboard, so I figured he was going to fix the frozen pancakes, or use the mix. Then I hear from the kitchen, “Mom? Do we have baking powder?”

Yep, it's in the cupboard on the baking side. It's a small canister, not a box like the baking soda.

I hear from the kitchen, "I think we're out of baking powder. Can I use baking soda?”

I got up to find the baking powder for him. Of course, it was behind some taller stuff, making it utterly invisible. I put the canister on the counter, and I see that he found the exact recipe I always use for pancakes.* He was making pancakes from scratch. I don't know if you remember, but he's 9.

A few minutes passed and my daughter asked if she could make some scrambled eggs to go with the pancakes. I said that she could. She asked how many eggs she should make, and I told her. She made the eggs while my son made the pancakes.

My kids made breakfast all on their own. Without any help. They felt such a sense of accomplishment and pride.

Do you remember being a kid, and tasting something that you cooked for the first time? When I first started making my own food, I thought it tasted better when I made it myself. Many times, whatever I was cooking turned out the way it was supposed to. However...

I remember the first time I tried to make a pound cake from scratch. I was 11, and I really didn't know the difference between self-rising flour and all-purpose flour. I thought they were interchangeable. The recipe said that if I was using self-rising flour, I should omit the salt and baking soda. I thought all-purpose flour was all-purpose, rising included, so I omitted the salt and baking soda. Well, baking soda is the leavening that makes the cake rise, so I ended up making a buttery brick. I believe it would have been a delicious doorstop. I would say it was like a loaf of biscotti, but that would be insulting to biscotti.

Now ask me about the first time I made chocolate chip cookies, peanut butter cookies, or a meatloaf. Go ahead, ask me.

I don't remember the first time I made any of those things. I assume they turned out the way they were supposed to.

We seem to forget all the stuff we did right, but can't let go of what we did wrong. Or at least I do. I mean, the great pound cake debacle was over 30 years ago, and I remember it like it was yesterday. I've made some great cakes since then, but I have trouble remembering those.

I guess the old adages about learning from mistakes and experience being a good teacher are sometimes true. I haven't mistaken all-purpose flour for self-rising flour ever again.

On the other hand, it wouldn't be a story if I had written, “The first time I made a pound cake from scratch, it came out exactly the way it was supposed to”.

I believe when things go wrong, or are unexpected, they stick in our memories because they are the exception rather than the rule. Most of the time, we go about our doing of the things, and the things usually happen the way we expect them to. But the times when you are surprised, those are the times we remember. Those are the parts we write into our stories.

So, if you are celebrating Thanksgiving tomorrow, remember to celebrate all of it; the mistakes, the surprises, the spills, and the things that didn't go quite right. Be thankful for all of it because the mistakes, the botched dish, that's the good stuff. Those things make memories. Of all the things that can go wrong, please don't undercook the turkey. Though it would make a great story later, salmonella is a real thing.

*I use the pancake recipe from the Better Homes and Gardens Cookbook with the red and white checked cover. Here's a link to the recipe.

I Appreciate You

Every once in a while, I really stop to realize how fortunate I am and appreciate my little life. I mean, I'm almost always a Pollyanna, but sometimes, I literally get stopped in my tracks by something. Take the other morning, for instance.

My son used to go to a late start school. My daughter's school started at 8:20, and his school started at 9:20. I would pack lunches separately; my daughter's early, and my son's later. This year, they are both at early schools, so I pack their lunches at the same time. My husband leaves for work early as well, so I pack all three lunches at the same time.

The other morning, my husband said with utter sincerity, “I really appreciate you packing my lunch every day. Thank you.”

That one sentence really gave me pause.

My husband and I have been married almost 21 years, and together for over 24 years. After all this time together, it would be so easy to take each other for granted. Perhaps not purposely, but you might just know that XYZ will happen, and you might expect it, rather than appreciate it.

That led to an awesome (albeit brief- it was nearly 7 am and people were trying to leave) conversation about appreciation and mutual respect. I said that I loved how we still appreciate each other after all this time together.

It's my opinion that being appreciative is important. I believe it's one of the keys to having a loving relationship. It's something so simple, but we have a tendency to assume someone knows how much we appreciate them. Sometimes it feels funny to say, “I appreciate you”. But it's important to say it. I think it's crucial to tell someone that you appreciate them, not just what they do for you.

I feel that appreciation is a step beyond gratitude. We use the words interchangeably, but I would argue that although they are related, they are different. To me, gratitude is passive; it's something you feel inside. Appreciate is active; it's something you do. Appreciation is showing gratitude, not just feeling it.

I am grateful for still having the ability to walk. I am grateful for advances in medicine. I appreciate people who love me, despite my shortcomings. I am grateful to have this blog as an outlet, and I appreciate you reading it. 

Fighting the Unpleasant Bits

I know I've mentioned before that I follow a page on Facebook called Positive Living with MS, run by a woman named Penelope Conway. You can read her bio here.

She always posts great stuff, and the other day was no exception. She was talking about how MS is different every day, and how it's okay to have a meltdown now and again. But she said something else that really resonated with me. She wrote it more beautifully than I could, so I'll just quote her.

“... It’s okay to have a meltdown from time to time. It’s okay to feel. It’s okay to cry, scream, rant, or vent about MS. Think about it…you are living with a disease that is slowly eating away at your insides. You are going to have tough days.

Denial isn’t the answer to getting through a life with MS. It’s actually not the answer to getting through anything in life. What gets you through is facing the reality of what is happening and choosing to work through every crazy emotion that comes to the surface; every fear, doubt, hurt, pain, and heartbreak.

Where positivity comes in is not in helping you to pretend that MS doesn’t affect you. Positivity helps you to face MS head on by giving you strength to keep going. When you are able to make it through a day of tears yet still find a smile in your day, not because you are hiding from what’s happening but because it’s the only thing pushing you through to tomorrow, that’s the strength I’m talking about...”

You can read the whole text here, in case you don't use Facebook.

I guess that's what I mean when I say that I choose to be Pollyanna; when I always try to look at the bright side. It's not that I don't acknowledge the bad or unpleasant bits; it's just that I choose not to let the unpleasant bits take over for very long.

When you have an illness that is never going to go away, any chronic illness, I don't think it's possible to deny having it, as much as we'd like to. I think the only thing you can do (at least the only thing I can do) is to accept (not embrace) your limitations, your fatigue, your pain, your cog fog, and the rest of your symptoms, and work around them the best you can. Try to find your normal, because it's probably different every day.

I've said it before, there are days when I feel like I could take on the world, and there are days when I have trouble making coffee. For me, it will always be like this. Every day, I fight against the fatigue, the cog fog, the balance issues, the pain, the tingling, the eye problems, and all the other unpleasant bits that I go through. I fight because that's my nature. I fight to remain positive. I fight so I can be the mom my kids think they have. I fight so that I can truthfully say that I have MS, but MS doesn't have me.

I find my normal. I may not like the normal I have today, but it will probably be different tomorrow anyway, so I've got that going for me which is nice. 

Things I Learned By Accident. Literally.

I started this entry yesterday, but by the time I finished it, it was too late to find pictures to insert. I opted to finish today.

My loaner car is a Volkswagen Jetta. It's a nice car for sure, and it reminds me of the TARDIS because it is much bigger on the inside. I just got it this morning, so there are things I need to get used to. Like unlocking the trunk, starting the car, and driving a small car again.

I feel like I can write about this now, it's been a while, and the claim is settled. I've wanted to tell this story for over a month.

While I had my son in the car, I was hit by a commercial delivery truck. Remember the post last month about taking my son for his haircut? That was the day I got hit, and why I didn't post “after” pictures that day. Three police cars, 2 fire trucks, and an ambulance arrived on-scene.

I learned a few things that day (to be filed under things I learned but never wanted to know). First and foremost, I learned that my Durango is built like a tank.

Not MY Durango, but mine looked exactly like this before the accident

My son and I walked away without a scratch. With no real injuries at all. Oh sure, he was a little sore the next day and he had a slight bruise from the seat belt, but overall, he was fine. I had the EMT's check him, just to be sure. I am so thankful that he wasn't hurt; there really are no words to express my relief and happiness.

I also learned that I have side curtain airbags. I didn't know prior to that day; I found out (cue rim shot) by accident. Yes, I was hit hard enough to have the side curtain airbags deploy. I didn't know that they smell like something burning when they deploy (another thing I found out by accident). When we finally came to a stop, I had my son get out right away because I was afraid my car was on fire.

I learned (by accident) that if there is a witness to the accident who tells you they saw the whole thing and it was the other driver's fault, get that person's name and number. Even if the damage completely corroborates your recollection of events, get the name and number. Even if the accident occurred because the driver turned left from the right lane and hit you in the rear passenger quarter panel, and the damage to your vehicle exactly matches that story, get the name and number. Even if a police officer tells you not to worry because your state is a no-fault state, get that name and number. Especially if you were hit so hard you spun around 180°, and stopped facing oncoming traffic, get that name and number.

Yet, we walked away, completely unimpaired.

But I'll tell you why you should get that name and number. When you talk to the other insurance company, you might discover that the other driver doesn't recall the events quite the same way you do (some people might say he lied to his insurance company). You might discover their insurance company takes their side over yours, even though the damage is obviously not your fault; the damage on his truck is the front driver's side and your damage is the passenger rear quarter panel. You might end up having to go through your insurance company rather than the other driver's for the sake of expediency. So be sure to get that name and number!

Upon filing my claim online, I learned that I have accident forgiveness (another thing I found out by accident) on my policy.

I had a really great adjuster from my insurance company come assess the damage to my vehicle. He saw that I would need: a new headliner, a new side curtain airbag, new airbag sensors, to replace rear passenger door and seal, to replace the rim on the rear passenger tire, to replace the rear quarter panel, and to repaint the body work. Having said all that, I should probably tell you that the Durango that I love even more since the accident is 10 years old.

The really great adjuster totaled out my car.

As I said earlier, my son and I walked away from this accident (that totaled out my car) without injuries. I believe it was due in no small part to my Durango. Oh, and I forgot to mention that aside from having to tuck the airbag up into my windows so I could see, I was able to drive my car home from the accident, and it drove fine.

I opted to buy back my Durango from the insurance company rather than try to buy a new vehicle. I loved my car before the accident, and I love it so much more since the accident.

I went to two different places for an estimate to fix my car. One place was around the corner; very convenient, but I know nothing about them. The other place is owned by my neighbor; not as conveniently located, but it's my neighbor's place. Both places gave me approximately the same estimate. All things being fairly equal, I decided to go with the shop that my neighbor owns. My neighbor even took my car to work so I wouldn't have to worry about arranging transportation home.

Even though my car was totaled, the insurance adjuster authorized a rental while my car is being repaired (which is why I have the Jetta loaner). How awesome is that?

I could have been really vindictive about this accident and I probably could have gone after not only the other driver but the company he works for as well. Of course, I thought about it for a minute, a very brief minute, but in the end I decided to just get my car fixed.

My son and I walked away from what could easily have been a very different tale. Walked away completely unharmed. I don't need a payday, I was already rewarded. And now my beloved Durango is being repaired. 

Buzz Buzz Buzz Thunka Thunka

I had to go for an MRI yesterday. For those of you keeping score at home, this is MRI number three since July. No, it's not common to go for that many in such a short time, and there's nothing else going on. I had to go for three because I had one done before the study started. I had to go for the second one because my insurance company deemed the c-spine MRI “Medically Unnecessary”, and by the time I was cleared to have it, I'd already had the brain MRI done. The one yesterday was the “end of study” MRI.

I don't mind having an MRI done, partly because now they give you the option of listening to music as opposed to the sound of magnets humming, clunking and buzzing. Oh, you still hear the buzz buzz buzz (think Emergency Alert System tone) thunka thunka sounds, but the sound is masked a bit by your choice of music. Sometimes.

At my first MRI of this year, the technician asked me what music I wanted to listen to during the test. I chose Fallout Boy for a couple of reasons. I like their sound, but I don't know their music well enough to be able to sing to it. Considering you need to be as still as possible during an MRI, I thought it was a good option.

The technician wedged my head into the halo using foam and slid me into the tube. I'm laying there, and the music starts. I listen for a few seconds, and it's oldies. Love songs. Oldies love songs. Oh. My. GOSH! I was stuck in the tube with my head wedged into this halo, listening to music that I really don't like. I thought to myself that I'd rather be listening to the magnets. My apologies to any of you who like love songs; I just cannot stand them. There's the odd exception here and there, but as a rule, no love songs. Ever. I considered pushing the panic button, but I didn't actually push it.

Thankfully, part way through the scan, the technician checked on me and asked if I was still doing okay. I said that I was fine, but if she wanted me to keep laying still, she really should change the station. No, I didn't really say that out loud. I asked her to please change the station to what I requested. She did, and the rest of the scan had Fallout Boy-esque music through the headphones.

For the second MRI, I don't remember what I asked for, mostly because that technician chose the station that I asked for, and the music played throughout the scan. I think I asked for something like classic rock. Maybe Van Halen or U2. I guess it doesn't matter.

At yesterday's MRI, the technician asked me what I wanted to hear, and I asked for Godsmack. She wedged my head into the halo, slid me in the tube, and all I heard was buzz buzz buzz thunka thunka. She forgot to start the music.

It's really hard for me to gauge time when I have no reference. With songs, I know most of them are about 3 ½ minutes, so 3 songs are about 10 minutes. When all I hear is buzz buzz buzz thunka thunka, it feels like an eternity. An eternity filled with buzz buzz buzz thunka thunka. The MRI sounds are too loud for me to think of anything except the MRI sounds.

We finally reached the part of the scan where the technician asked if I was all right. I said I was fine, but there was no music. She had forgotten to turn it on. She had even forgotten what I asked to listen to. She turned it on, and the rest of the scan I was figuratively head banging.

All three of my MRI's were ordered with and without contrast. When I went for my first MRI back in 2004, contrast was delivered was through an IV. It added a lot of time to the MRI. Also, the contrast was iodine-based back then. I have a shellfish allergy, so I had to take prednisone and Benadryl before getting the contrast dye. That, of course, added more time, because they had to wait for the medicine to kick in before they could start the IV, which took about 20 minutes if I remember correctly.

The dye they use now is Gadolinium-based and is delivered through an injection. The only adverse reaction I've had (even without any allergy precautions) is that I sneeze 3 times after the injection is administered. It's really difficult, though not impossible, to sneeze when your head is wedged into a halo. 

A Day of Awesome Surprises

My driver's license expired on my birthday, which was a little over a month ago. There were a couple of times I intended to go to the DMV, but life got in the way; I couldn't seem to find two solid hours to devote to waiting in line. Plus, the standing part just didn't sound like any fun.

Part of the reason I didn't push myself to go renew my license is that I actually have a decent picture on my license. I didn't really want to give that up. One day, I thought, “this is the day”, and then we had torrential downpours. The thought of getting soaked, and looking like a drowned rat just didn't seem like a good idea. Go ahead and say it, I'm vain. Yeah, a little bit. Keeping a picture that I hate for years to come just wasn't appealing to me.

Today I decided to conquer the DMV.

I had totally forgotten that they put seats in at the DMV, so I wouldn't have to stand the whole time! Awesome surprise number one!

The woman at the information counter was a childhood friend of mine. She gave me the form to fill out to apply for the enhanced license. In New York, we can get an enhanced driver's license, which will allow us to go to Canada without a passport. Since I live about 10 miles from the border, I figured it would be a good idea to have an enhanced license. My kids have never been to Canada, and by the time I was their age, I had been there countless times. Kids can still cross the border with only a birth certificate, so I see a trip to Canada soon.

Since the woman at the information counter knew me, she told me that she couldn't process my application. I thought, oh man, here comes the loooooooooong wait. She took my photo (which isn't hideous, awesome surprise number two!), scanned my documents into the system, and sent me over to the Supervisor's window. The woman at the Supervisor's window sent me back to the information counter, because my friend didn't give me a number. My friend rolled her eyes, and gave me a number.

I was just going to sit down, and the woman called my number! Awesome surprise number three!

I went to her window, she checked all my documents, and I had everything I needed to get the enhanced license! Aside from your license, you need proof of residency, your social security card, and your birth certificate. For proof of residency, I brought a utility bill, which was acceptable. I had my social security card and my birth certificate. At the last minute, I grabbed my marriage license to show the transition from my maiden name to my married name. Good thing I did; they needed that, but if it's listed on their website, I didn't see it.

She put my information in the system, I swiped my card, she gave me my receipt/interim license, and I was finished. THIRTY MINUTES!! From the time I walked in the door, until I was back in my car, it was only thirty minutes! Awesome surprise number four!

On my way out, a young guy (probably in his twenties) held the door for me, I thanked him, and I didn't realize there was a woman coming out behind me. He sprinted back to hold the door for her, too. We both thanked him, and I apologized to the woman behind me. The guy wished us both blessed days. Awesome surprise number five!

After leaving the DMV, I had enough energy to make two quick stops. Awesome surprise number SIX!

Right now, I'm sitting, having coffee, and thinking about how lucky I was on this Friday the 13^th. 

Three Hour Tour: Two

I don't know how long you've been reading my blog, but back in June, I wrote about my “Three Hour Tour”. Here's the link, if you want to see it. 

No, it was actually a different 3-hour-tour

Anyway, today I go back for my end-of-study three-hour tour. No, you're not hallucinating; it hasn't been a year since I started the clinical study. 

The study was supposed to last a year after I got randomized to take Copaxone. For a year. I did not tolerate Copaxone well at all (you know, the medicine with the “least” amount of side effects), so it was decided that I shouldn't take the Copaxone anymore. In (what I think is) an odd twist, I'm still part of the study, I'll just be listed as non-medicated. For whatever reason, the makers of Copaxone still want to follow me. Even though, if all goes well, I'll be starting Tecfidera fairly soon. I guess the pharmaceutical companies have to find a way to spend all the money they make from MS drugs.

So I just got back from my visit. I told you an untruth, my visit was only 2 ½ hours today not a 3-hour-tour.

Today, my balance was much worse than my June visit. I had a hard time standing with my eyes closed. My vision was worse, too . I have no idea why. Maybe my eyes have a migraine hangover?

The last part of today's visit was getting my blood drawn. I'm sure you've had blood drawn before. Have you ever looked at the nurse and thought to yourself, “She is gonna hurt me”? Well, I had that nurse today. She missed my “beautiful vein” (her words), and tried to catch it by moving the needle around inside my arm. Few things bother me about getting blood drawn. That's one thing that activates my gag reflex; I wanted to vomit.

“I'm so sorry; I have to go in again. I caught the side of your vein.”

“Fine. You get one more try. One.”

I so badly wanted Clara Also to walk in the door just to draw my blood! On the second attempt, she managed to get the vein, but by the time we were on the third vial, she said it wouldn't fill. Oh joy. I did the clench and unclench my fist, and finally she realized the vial was full; that's why the blood wasn't drawing.

She did apologize profusely, and I was fairly understanding about it, I mean it does happen. She's used to putting needles in for infusions, not drawing blood out. I just hate it when I'm right about things like that.

Two AM. Really? TWO AM??

I was highly annoyed when I woke up at 2:00 am this morning, unable to go back to sleep. I switched on the television and I noticed my vision was weird and slightly blurry. After a few minutes, it dawned on me that it was a saw tooth aura that was interfering with my vision. I didn't notice right away because this saw tooth aura I had during the night was different from my usual auras. And, you know, 2:00 am.

Usually, my auras have very large, pronounced chevrons, like the design on Charlie Brown's shirt. They are also filled with neon colors, making them hard to miss and ignore. This aura had tiny zigzags, almost imperceptible, in fact, and had very little color. Coupled with the fact that it was 2:00 am, I almost ignored it.

I was really tired (I mean, it was 2:00 am), and I had the great debate with myself. Should I get up to take something, or try to go back to sleep? Maybe it's not really a migraine. I opted to get up and take something, and I am so glad I did. I fell asleep, and when I woke up, I had a little headache, but I didn't have a full-blown migraine.

Most of the time when I catch a migraine starting like that, I take some medicine with a caffeinated beverage. I don't know if it really makes a difference, but a doctor told me to do that years ago, and it almost always works for me. Even if I don't have a migraine medicine at the moment, over-the-counter pain relievers with a caffeinated beverage stop the headache more often than not. Well, obviously at 2:00 am, I didn't want to drink anything with caffeine, so I just drank water.

Isn't it funny how our bodies work? There I was, sound asleep, then, BAM, the start of a migraine wakes me from a sound sleep. I suppose this is a good reminder for me to always listen to my intuition when it comes to what's going on inside of me.

We all do that, don't we? Our body tries to whisper something, and we ignore the whisper. Our body says something a little less subtle, and we still ignore it. Finally, our body shouts at us to the point where we can't ignore it any longer, and we finally decide to listen to it. Apparently, our bodies are moms, and we're all just kids.

Today, I promise to listen more closely to my body when it tries to tell me something. Well, promise may be too strong a word. Perhaps "promise to seriously take into consideration what my body is trying to tell me" is a more accurate phrase. In all reality what will probably happen is that I will proceed to ignore what my body tells me if it's an inconvenient time, or I'm in the middle of something. My body will end up yelling like a lunatic, and I will finally relent because I have no choice.

Monumental For Me, Probably Not A Big Deal For You

Did you ever notice that 5 minutes in the morning is a whole lot different than 5 minutes in the evening?

That just popped into my head, but that's got nothing to do with today's post. Surprised? If you've been reading any of my posts, you shouldn't be. I have a tendency to write whatever pops into my head. Which can be scary, but also fun.

I started my new anti-fatigue medicine on Saturday. Ironically (weirdly coincidental, or oddly enough), I had a marathon day of physical activity. Not all of it was in the fun sense because I spent hours having to do stuff involving standing, bending and reaching. Before I did all that, I went to two separate stores looking for Christmas items for my kitchen window. I didn't find what I wanted, by the way.

In times past, if I pushed myself too hard on one day, the next day I'd be down for the count. Sunday brought more physical activity (rearranging furniture, sweeping, vacuuming). Certainly by Sunday night, I thought I'd be really worn down. Oh sure, I was tired, but not the I-can't-move-any-part-of-my-body-and-blinking-is-exertion tired that would normally happen when I overdo it.

Yesterday, I took a down day of sorts, yet I had different furniture to move, I did a load of laundry, and straightened up the kitchen. Later in the day, I went grocery shopping.

If you recall, I've been averaging being able to do about one thing per day. Maybe two, if they are “easy” things. Some days, it was less than one thing. I cannot tell you how long it's been since I did so much in a day, and it feels great. I'm starting to feel like a living person again, instead of a lump of existence.

Now for the downside of the medicine. When I first take the medicine, I feel extremely jittery, like the way some people feel after "too much coffee". I personally don't know the feeling of "too much coffee", but that's what I've heard. I feel flushed, and get really warm; sort of like what I imagine a hot flash is like. Those effects wear off after a fairly short time. The jittery feeling is gone first, then within about an hour, the warm, flushed feeling is mostly gone.

The first day, I felt a mild “crash” after a few hours, but it wasn't so pronounced that I had to lay down. I haven't felt one since. I may have one when I up my dose, but I may not. Time will tell, right?

I've also had trouble falling asleep and staying asleep. That could be from any number of things, so I'm not entirely blaming the medicine for that. I'll just see if it changes. I also haven't reached my full dose yet, so I'll definitely be watching to see if it gets worse.

The other upside to the new medicine is the price. When I was taking the Provigil, the generic version cost over $1700 for 60 pills. You read that right, $1700 for 60 pills, or just over $28 per pill. I had to fight with the insurance company every month to get the prescription filled. The new medicine is less than $50 for 60 pills; less than $1 per pill. As long as the side effects don't get a lot worse or multiply, and the medicine keeps working, I think (fervently hope) I've found a solution.

Maybe I can start yoga or tai chi! 

We're S-H-O-P-P-I-N-G. We're Shopping.

I took the weekend off from the blog; I hope you don't mind too much. More than that, I hope you're not too happy about it. 

The title of today's post is a song by The Pet Shop Boys. The title is my sister and me, in days past. If you've never heard it, you can listen to it here.

I was just reading an article about Black Friday shopping. The article talked about how many stores will be closed on Thanksgiving this year. So far, none of the big ones (Walmart, Kmart, Sears, Macy's, Target, Kohl's) have said anything either way.

To be honest, I don't really have an opinion about stores being open on Thanksgiving. I've run to the store on Thanksgiving, and I've stayed home. One year, I had to go to the store to buy a roasting pan for my turkey. I didn't realize that I didn't own one, and I was plenty thankful to find a store open on Thanksgiving!

Oh, I understand that Thanksgiving is a family holiday, but there are plenty of places open on Thanksgiving; plenty of people who have to work on Thanksgiving, and even Christmas.

Nurses

Doctors

Police officers

Firefighters

Corrections Officers

EMT's

Dispatchers

911 operators

Bus Drivers

Rail employees

Airline employees

Airport personnel

Hospital personnel

Movie theater employees

Gas station employees

Toll collectors

Truckers

Newspaper employees

Grocery store employees

Radio station employees

Television station employees

This is by no means an exhaustive list, and it's not ranked in any way; it's mostly to illustrate my point. Nobody loses their mind because a hospital, an airport, a firehouse, or a prison is open on Thanksgiving. Mention that a store might be open and people freak out!

I know first-hand that retail employees work hard. I worked retail for a few years. We were crazy busy during the holidays. I've worked for a florist and a jewelry store. The jewelry store was insanely busy on Christmas Eve. The store was about 400 square feet, there were 6 employees working, customers were 6 deep at the counter, and some were waiting to get in the store. You would have a customer say something like, “I want earrings, no more than $300. Wrap them.” I'd never seen anything like it.

Last year I was chatting with a friend of mine about the Great Thanksgiving Shopping Debate. I was saying that I probably wouldn't shop on Thanksgiving. Not necessarily because of solidarity with retail workers; it's mostly that I'm busy cooking on Thanksgiving. My friend works in a non-essential profession (she's not a doctor, a police officer, etc), and she told me that she's had to work on Thanksgiving before. Her profession is one you would never think about anyone having to work on Thanksgiving. I had no idea she'd ever worked on Thanksgiving.

Every year, I watch the Black Friday ads, and it seems like every year, nothing I have in mind is on sale. Last year, I did the majority of my shopping online. I didn't feel as though I missed anything.

An outlet mall near me used to have something called “Midnight Madness” (they probably still do). They opened at midnight on Thanksgiving night. I went a couple of times; it was actually fun, but I think it had more to do with who I went with than the actual event. I'm not really looking for clothes this year, so I will probably skip that. The Kate Spade outlet had some amazing deals, but I try really hard not to buy things for myself. One year, there was a deal I couldn't pass up, and I let my husband wrap it for Christmas.

I haven't decided about going out on Black Friday this year, or even on Thanksgiving. I suppose it depends on whether there's anything to draw me out of the house, how much cooking I'll be doing, and what my body is saying.

Do you partake in the madness?

No Shots Fired

I have an appointment at my neurologist's office at 11:00 today. I'm excited and anxious about it. I'm assuming they will be taking me off of the Copaxone permanently. Clara* will be at the appointment along with the doctor (or nurse practitioner, I don't exactly remember) to go over my options.

I think I'm going to ask about the oral medicines. I'm totally over shooting myself. 

All of the MS medicines have their own list of side effects, and some sound worse than others. All I know is that everyone is different. What works for one, doesn't work for another. Take the Copaxone for example...I had a multitude of side effects, yet other people did not. I felt worse taking the Copaxone than taking nothing.

As you can see, I started to write this before I went to the appointment today, but I didn't have time to finish.

My appointment was with Vera**, a nurse practitioner in the office. I hadn't met her before today, but I adore her! She is funny, she listens, and seems to “get it”. She absolutely didn't suggest any injectable medicine. After speaking with Vera, it seems that best option for me is to start taking Tecfidera. We talked about all of the oral medicines (Gilenya, Aubagio, and Tecfidera), and talked about the pros and cons of each one. One side effect I won't have to deal with is needle anxiety though. Supposedly, your body adjusts to this medication within weeks, and the side effects level off. We'll see. I may not have any of the side effects.

It's going to take about a month before I actually get the medicine. I have no idea how this will work with my crummy insurance, but Vera assured me that with all of the assistance programs out there, I'll be able to get the medication.

Also, she prescribed a medication to help combat the fatigue. I'm almost more excited for that one than for the Tecfidera!

I used to take Provigil for my fatigue. It was wonderful at first. About 20 minutes after I took it, I could feel it start to work; it was like a switch flipped on, and I was close to me again. The doctor who prescribed it told me that it sometimes stops working, and when that happens, take a “Provigil vacation” for a couple of days. That worked for a while. Then it stopped working. I would take it, then a couple hours later, I'd take another. Nothing.

I tried Nuvigil. That never had an effect on me.

I'm excited to try this new medicine. In fact, I'm just about giddy over it! I can pick it up now; it's ready, but I can't start it until tomorrow morning (or I'll never sleep, supposedly).

One odd thing about today's visit; even though I'm no longer using the Copaxone and I will be starting a different medicine, I'm still in the clinical study. I'll be listed as non-medicated, or some such label. Clara said they still want to follow me (I'm assuming it's not me specifically because I'm just that awesome, I assume it's more of a general thing). I will still get labs and office visits covered every 2-3 months. I don't understand why they are doing it, but I agreed to it.

*Not her real name

** Not her real name, either