It’s been a while since August 8. Lots of things have happened. That’s life! I figure that it’s time for a good update.
What’s new with my MS
The last time I took any kind of disease modifying drug to help slow my MS progression was July 11th, when I quit Tecfidera. For those of you who are not inclined to do the math, that’s about 6.5 weeks ago. I wasn’t even on a therapeudic dose long enough for it to be helpful for me, so if you really want to know how long it’s been since I was on medication to help my MS in any meaningful way, we’d have to look at when I stopped Copaxone, which was on June 2nd. This means that my MS has been running amok for almost 3 months. That’s an entire season!
Honestly, I miss Copaxone. I never thought I would say that, since I hate giving myself injections, but I haven’t been enjoying the come-and-go nature of my MS symptoms which are more pronounced since I stopped. Numbness and tingling on my left side and on my back has been annoying, but it hasn’t stopped me from doing anything. Fatigue has been significantly worse. Bladder/bowel stuff has been annoying but not disabling. Fortunately, I stay pretty close to a bathroom at all times. I’d hate to already be needing Depends. I’ve had spells of time when seizures returned with force. Last night, for example, was pretty tough, but today has been fine. I’ve noticed that getting enough sleep (which for me is apparently about 14 hrs a day) is absolutely necessary to proper bodily function.
By and large, I’ve been alright. I’ve enjoyed not dealing with any side effects from meds. I’ve enjoyed not injecting myself nightly, and I’m actually surprisingly optimistic about starting Gilenya (a once-a-day pill for MS) on Thursday of this week. I have to be at the hospital at 8 a.m. for the administration of my first dose. I’m hoping that the 6-hour observation period goes smoothly.
What’s new with the Paleo Diet
Well, first of all, I feel like an ass-and-a-half for sharing those ketchup recipes with you. I was so proud of my work at the time — but I’m really not pleased with what’s come after the first day. I’ve been using the stuff that I made for a few weeks now — and the first thing that happened with it is that the condiment got super thick, just like tomato paste. I have to dilute it with water every time I use it.
I intend to make another batch using a different recipe. This recipe is based on Heinz ketchup, and has gotten good reviews.
6 oz. tomato paste
1/2 c. light corn syrup
1/2 c. white vinegar
1/4 c. water
1 TBSP sugar
1 tsp salt
1/4 tsp onion powder
1/8 tsp garlic powder
- Combine all ingredients in a saucepan over medium heat. Whisk until smooth.
- When mixture comes to a boil, reduce heat and simmer for 20 minutes, stirring often.
- Remove pan from heat and cover until cool. Chill & store in a covered container.
To make it paleo-friendly, I’m just substituting honey for the corn syrup and sugar. Because honey is 1.5 times as sweet as sugar, I’m only adding 1/3 c. for the whole recipe. I know agave nectar would be a better 1-to-1 substitute for corn syrup, but it’s also a high-fructose syrup (90% fructose, 10% glucose). Honey has a better ratio of fructose to glucose (40% fructose, 30% glucose, 30% other).
Several folks commented on the recipe that they subbed honey with good effects, so I’m hopeful that my next batch of ketchup lives up to my expectations.
As for other paleo-ness: Adam and I decided not to join in on August’s Whole30. I started making a meal-planning calendar and it just got too overwhelming. Right now, I’m just focusing on yummy, simple recipes. I promise I’ll share more.
What’s new with life in general
Well, this past weekend was all kinds of freakin awesome. My parents and my brother all came in town to visit me. It still weirds me out to think that Mom and Dad are in the rural sticks of PA and that Daniel is in Denver, CO. Some part of my brain still acts like I’m in college and they are still living together in our home in Collierville, TN even though we’ve all moved on with our lives. We’re all still really close and talk frequently, so it feels like we should just be able to hop in the car to see one another, but that’s not the case. We actually hadn’t seen each other since Poppy’s funeral last year.
This weekend was pretty great because we made a commitment to being relaxed. We went out for delicious (and very non-Paleo) meals, and otherwise, we just hung out – no pressure. Sure, my type-A personality required me to put together a wicked long list of things we could do, but it was more so that we could acknowledge that we had options and feel good about our decision to do nothing. 🙂 All that any of us cared about was just being together. So, Dad and Dan got to play chess while I showed Mom my Sims 3 game one day and after walking through a 4-story mall and hitting a bookstore, we watched a few episodes of Too Cute: Puppies back at their hotel room the next. I feel like I made out like a bandit, honestly. I got to spend time with people I really, deeply love, was treated to fantastic meals, and Mom even got me some nail polish and mascara. (BTW – I totally endorse Maybelline’s Volum Express Falsies Big Eyes Washable Mascara. It is the shit. It adds volume and length without being clumpy, and it doesn’t flake off.)
Other than that, life is good and simple.
I’ve graduated from cognitive behavioral therapy. My therapist is so pleased with how I’m doing that I only have to have a visit with her now if something comes up and I need to call her, which is great.
I’m no longer afraid to take public transportation unless I’ve had a seizure in the last 24 hours, so I can get out of the house fairly easily, and I actually do have places I want to go to from time to time.
As for other activities, I’m currently working on writing a novel — an activity which is simultaneously frustrating and entertaining. Currently, I’m only 2 chapters in, but I have faith that in time I’ll get through the whole story.
Adam and I are still working out at the YMCA at least 3 days a week, doing weightlifting on resistance machines and cardio on the elliptical or a treadmill.
And I’m still adding recipes to the Paleo Compendium every day, always in an effort to make my relationship with food easier and yummier.
I’m still butt-crazy in love with my husband after almost 3 years of marriage and 3 years of courting, and our dog is at least 5 times cuter and sweeter than he is a pain in the ass. 🙂 I really couldn’t ask for more out of life.
Right now, I feel very lucky.