RA Update

I saw my rheumatologist yesterday and we discussed different medication options. Back in August, she added sulfaSALAzine to the methotrexate, which has become less effective. I’ve been struggling to take the sulfaSALAzine consistently, because it needs to be taken twice a day, with food. Because of the gastroparesis, I don’t always eat dinner if I’m digesting slowly. I also am not remembering to take my pills when I’m eating, and they have to be taken with food. The methotrexate is also starting to cause some nausea again, and my dr thinks my hair is getting thinner again, like it did when I was on the Mtx pills. So... we talked about other medication options. I was really hoping for a once daily pill that didn’t have to be taken with food. As it turns out, that’s not really an option. There are other pills, but the side effects won’t play nicely with my gastroparesis, so my dr really doesn’t recommend them for me. The other options are more injections that would be used in conjunction with the methotrexate I’m already on, or, if I want to get off the methotrexate, IV infusions. She recommends Orencia, so I’m looking into that.

It’s been 5 years since I went on the methotrexate. My joints have responded well to it. We knew at some point it wouldn’t be enough. All of my medication options are more complicated, though, not simpler. I feel like managing the RA is like running on a hamster wheel, and I’m ready to get off. But there’s no getting off, and I’m struggling with that. I’m 39 years old, and this is the rest of my life. Assuming I live to 80, I’ve got 40 more years of trial and error medication taking to find something that works until it doesn’t. Most of the options are used in conjunction with methotrexate. I thought I was okay with having RA, and here at the first transition to new meds, the first of, potentially, many bends in the road, I find myself grieving this disease all over again.

Am I just not trying hard enough to make the sulfaSALAzine work for me? My labs have improved on it, even with my VERY spotty dosing over the past few months. Can I ask Leif to do the injections for me so the methotrexate isn’t such an ordeal each week? It’s gotten bad enough that I’m missing doses of that from time to time, too. Would it be better if I handed the needle to someone else and let them do the sticking? Can I better handle the pain if it’s not self inflicted?

My insurance company has been hounding me to get signed on to the Accordant Care program. It’s free, and will supposedly help me manage my RA treatment plan. I’ve been debating about it for 6 months or so. They’ve sent me the paperwork three times and call me every couple weeks about it. I filled out the paperwork yesterday. I think I’ll put it in the mail today. I figure if I am going to have to deal with medication re-evaluation every few years and most of the RA meds are going to be things I have to fight to have covered by insurance, and (unlike methotrexate) are prohibitively expensive without insurace, maybe being in this program will give me someone on my side who can help me appeal to insurace.

Is the bad that I know better than the bad that I don’t know? Do I just resign myself to taking methotrexate for the long haul and feel crappy for a day or two with each weekend dosage? Is this just part of the deal? Do I double down my efforts to make this regimen work, or do I move forward with the Orencia infusions, believing, hoping, that they will offer me something better? Is there a door number three?

I told Leif last night that I feel much more comfortable as the one who loves the worse of “for better or worse” than as the one who is the worse of “for better or worse.” I don’t like being broken. I want to have better to offer people than this broken version of me, and I’m struggling with that right now.

Low Carb Vegetarian

This summer, I stopped eating meat. As it turns out, my body finds meat difficult to digest. Since I stopped consuming it, I haven't had any issues with my gastroparesis. Score!

After the last few bloodtests for the Rheumatologist have come back with a higher-than-expected CRP, my dr. hypothesized that my CRP was elevated due to my Insulin Resistance, not my Rheumatoid Arthritis. So... back to low carb eating.

Now, the last time I went on a low carb diet, it was wildly successful from the weight loss front, but that's also what triggered my gastroparesis and I spent months throwing up a lot of the food I ate because I simply couldn't digest it. The solution was to eat more simple carbs; not an insulin-friendly plan. But my gastroparesis seemed to be under control with the vegetarian diet, so I thought I'd give it a try.

Of course, I was pondering all of this shortly before the start of Lent, so it seemed a fitting time to try a 6 week experiment. I weighed myself on the day after Ash Wednesday, which happened to fall on Valentine's Day this year:

March 15 - 163.6

Ooof.

I've never seen a number that high on my scale.

Leif helped me figure out what sorts of things I needed to be eating. In general, I find myself eating some variation of the following things daily:

• 2 eggs (scrambled, fried, hard boiled, whatever)
• Whey protein shake (often with a peanut butter powder added)
• Vegetables
• Low sugar fruits
• Cheese

I do my very best to make sure I eat at least 1000 calories a day (I'm 5 feet tall, remember), and to eat an adequate amount of protein, while trying to make sure my carbs come from fruits and vegetables. 

We've got 2 weeks left of Lent, and it's been about 4.5 weeks since my experiment began. I'm drinking more water, eating a better quality (and more moderate quantities) of food, and find myself eating things I never thought I'd like, such as roasted asparagus. And today when I weighed myself, the scale said:

April 18 - 149.6

That's 14 lbs down in a little over 4 weeks. My goal was to lose that amount by April 1. I'm shocked at the progress. It has slowed down a little bit over the last week, but even so I've lost 2 pounds this week. 

It looks like I need a new goal!

Mostly Plants

Tonight I was asked if I'm a vegetarian. My answer surprised me: "Sort of." I don't know when I became "sort of" vegetarian, but I have been making a point to eat differently this summer. My mantra?

Eat real food.
Not too much.
Mostly plants.

The mantra comes thanks to Michael Pollan and his Food Rules. I think it's a good one.

I'm going to give the plant based diet a try for a few weeks to see if it makes a difference in how I feel. Aside from the butter and eggs in the scone and muffin today, I had a plant based day. I enjoyed my food. I felt good. I was full. We'll see where it goes from here.

2017 Weight Progress

Things have gone backwards, but as I go through my planner from last year, I'm jotting down my weigh ins so I can see what the progress (backward though it may be) looks like.

• 138 (Aug 20)
• 139.4 (Sept 2)
• 139.4 (Sept 4)
• 141.2 (Sept 12) - Threw up toast and Metformin at 4:50am
• 139.2 (Sept 15)
• 140.6 (Sept 19)
• 143.6 (Sept 29)
• 141.4 (Oct 3)
• 140.8 (Oct 12)
• 141.8 (Oct 14)
• 144.4 (Nov 6)
• 144.4 (Nov 8)
• 145.4 (Nov 14)
• 144.6 (Nov 18)
• 150 (Jan 3) - Waist 35, Hips 41
• 149.4 (Jan 4)
• 150.4 (Jan 6) - 100.2 temp
• 150.6 (Jan 9)
• temp 99.6 (Jan 16)
• 149.4 (Jan 17) - 100.6 temp - flare
• temp 100 (Jan 18) - flare
• temp 99.6 (Jan 19)
• 150.8 (Jan 24) - 99.5 temp
• 149 (Feb 4) - 99.6 temp
• 151.6 (Feb 8) - 99.6 temp
• 152.2 (Feb 22) - 99.4 temp

• 159 (Aug 9)

I don't know why I've gained 20 lbs this year. It's discouraging. How do I reverse the trend?

New Year, New Goals!

Happy 2016!!

I'm not one for new years resolutions about weight loss, but I am all for setting new goals, so... here goes.

I weighed in at 131.6 this morning. The holidays (and my carb/sugar intake) have taken their toll, but not so much that I'm discouraged. So here's my 2016 plan...

I want to get down to 115 lbs this year.

I think I can do it. It means losing 16 lbs in 2016. Sounds good to me!!

SO... carb watching (which I totally didn't do today) and exercise (which I also didn't do today) for the win. I want to cook more at home and eat more meat and veggies. I can do that. I want to make a point to go to the gym more often than I have the last month. That shouldn't be hard. I just need to build it into my daily / weekly routines.

Here's to a happy, healthy 2016!

22 lbs and counting!

I weighed in at 128.0 this morning, which means I am down 22.4 lbs since the middle of July. Yay! It also means I'm getting very close to the "healthy" BMI weight for my height. My goal is to weigh 127 lbs by the end of the year. Even though my weight loss has slowed down considerably since school started, I think this is doable. Here's to a healthy new year!

19.5

That's what my scale says I've lost since the middle of July. 19.5 lbs. That puts me at 3.5 lbs from a healthy BMI. Next stop... 127.5 lbs!