As a lupus patient, you get your blood tested regularly. For me, regularly means once every four weeks. (That’s how often I see my rheumatologist as well.) A few months ago, my left arm (my draw arm) was really hurting. I couldn’t fully extend my arm even if I tried to do it through the pain. I blamed the frequent blood draws. I asked my rheumie about them. He said it was the lupus not the draws. The pain eventually went away, but the regular blood draws didn’t. He was right; it was the lupus.
Today, I am at the lab early along with a lobby full of other hungry people. We are all here early because we had to fast to do our lab work today. The sooner you get your lab work done the sooner you can eat. Mornings are usually a busy time for labs because of this reason. There are quite a few people here today, so there is a wait. However, I did make a 7:30 a.m. appointment. My fast was a 12-hour fast—water is allowed. But, it has now turned into a Continue reading →
I am a Gen Xer (not yet forty), and I have a pill box. I have had this pill box for sometime now, but in the past few months it has been more of a constant in my life–a ritual. Because I have lupus, I rely on daily medications to keep me functioning. And because I have had three serious flares in the last eight months, I have become quite intimate with my pill box and its contents. It’s a weekly box as you can see. I freshen the strip every Friday. Friday mornings seem to be slower for me, so it works. There are occasions when that schedule changes. For instance, if I know I am going to see my doctor, who will more than likely change my medication dosage, I may refill the box on a Wednesday. You see what I mean. I saw my doctor yesterday, so I am refilling my box a day early. My prednisone dosage got cut in half (yay!). That means more space in each little compartment and more sleep for me. (Insomnia is a side effect of prednisone.)
My pill box is the little sister to my larger box that holds the meds in their original-from-the-pharmacy containers. And I was able to toss at least four of those containers out today. This was strangely Continue reading →
A lot of things went wrong today. I went to my rheumie appointment by myself. I haven’t gone by myself in months. But I have been feeling better, and the only appointment available didn’t work with my DH’s schedule. So off I went. Traffic was bad, and the carpool lane wasn’t an option as it usually is. I called the doctor’s office to let them know I’d be about 10-15 minutes late. What I thought was a professional courtesy did not work in my favor. The receptionist said that I would have to reschedule and that he was cancelling my appointment for the day. What?! I couldn’t believe it. I reiterated that I was calling to let them know I was going to be late not to reschedule. Ha! And he just reiterated right back—I needed to reschedule the appointment; they wouldn’t see me today since I was late. Ugh! I was incredibly frustrated. I told him I’d have to call him back when I could access my calendar (i.e. not driving). So what could I do? I was already across town. I might as well make the most of it. So, I went shopping–Whole Foods shopping that is. I grabbed a few ingredients and headed on out. The plan was to go to Whole Foods after my appointment and have lunch there, but no appointment, so I was there early. I decided to pass on WH’s lunch and just eat at home. Plus, it was before noon.
I hopped on the freeway and bam! Complete. stand. still. You know the kind that only happens after you get on the onramp? Here I was stuck. And then the worst thing happened. Continue reading →
Today was my first day on the elimination diet. It went well for the most part. I woke up early (but later than I had planned) to make our turkey-sage sausages and sweet potatoes. The plan was to bake the sweet potatoes, but I got so caught up in making the sausages that I sort of forgot about the baking. I improvised and made sweet potato hashed browns (hashed oranges? No, that doesn’t work.) instead.
And speaking of sweet potatoes, I would be remiss if I continued without letting you know that I am actually talking about Continue reading →
We made it through! I made it through! I woke up feeling really good on the morning of the walk. I had a small breakfast and made sure I was covered in sunblock. I went to bed at a good hour the night before. In addition, I took 2 days off (from training) prior to the walk, which helped me recoup my strength. I was excited and ready to go! I couldn’t wait to join up with the rest of the Moons & Spoons team. I had packed my items the night before, so we got ready in a fairly short amount of time. This is what I brought with me to the walk.
It was 91 degrees Fahrenheit in Pasadena, California on the day of our walk. Yeeesh… The walk began at 10am. It was sweltering at 9am during check in. I could feel myself fading just a bit. There were very few shade spots as the sponsor tents and the event center stage was placed in the middle of an open field. You know, I have been to this venue before, but I hadn’t thought about the lack of shade. One of my friends asked how I was doing. With concern, she suggested that we move to the outskirts of the field where some trees and shade resided. We moved. It was such a good suggestion. I was so busy looking for our team mates to arrive that I wasn’t paying attention to my wavering energy levels. I was also very grateful for the sun umbrellas that we brought. I would not have made it through the walk if I didn’t have the umbrella.
Here is our awesome (in the shade) team.
Our hang out spot prior to the race kept us from overheating before the race. But unfortunately, we couldn’t hear everything that went on at center stage. However, we did get to hear the beautifully sung American Anthem which kicked off the walk. Despite the heat, it was a lovely day in Southern California.
I learned a lot doing this 5k. For sure, I learned that my body is not the same as it was prior to my major flare. My training which included endurance and strength building definitely helped me, but I could still feel a difference during the walk. I could feel the muscle fatigue set in much earlier than I had expected. I also needed water available to me throughout the entire walk. I know that lupus affects each person differently, but I wonder how my fellow lupies were feeling during the walk?
Some of my favorite aspects of the walk were seeing people from many walks of life joining together for one purpose—to cure lupus. It was fun to catch glimpses of the conversations that went on along the route. And it was also a great opportunity to catch up with my team mates—some of whom I haven’t seen in awhile. We had some nice conversations while everyone was chugging and sweating along. And I can’t believe how many steps/miles I covered that day—5 miles! I was so encouraged by all the other people walking the walk. I was especially motivated by my friends and family who supported me on this walk; they kept me going. I am so grateful.
We had three canine cuties joining us for the walk. Moby and Rory are featured here. And here I am in front of the snack table (of course!) ready for the walk. 😉
I checked in with the team after the walk. And here’s the good news. I wasn’t the only one who was exhausted! Just about everyone else on the team was just as tuckered out. My DH and I just rested the rest of the day and caught up on some T.V. watching. We were ready for bed by nightfall. We went to bed before 9:00 p.m. (‘cause that sounds a lot better than we went to bed at 8:00 p.m. [not kidding]).
Here are some other things I learned from this walk.
Scope out the venue and the route beforehand. If you have time and energy, go in person. If not, reach out to the event organizer to get more information about the location. And you can always scope it out via Google (Earth) maps. If I had done one of these things, I would have known ahead of time that there wasn’t going to be much shade available to us and planned for our team meeting and hang out place accordingly.
Carry your own water. I decided to leave my bottle of water in the car because I didn’t want to carry it—to be weighed down. I did this because there would be water stations along the route, but I needed water well before the water station appeared on the route.
It’s a good idea to bring a little one along for the walk. My 3-year-old cousin joined us for the walk, and she was a great walking partner. She kept me at a good pace and forced me to take it slow. I needed slow.
Depending on the time of the race consider bringing along food for lunch. My DH and I were ready to eat lunch by the time we finished the race. We were pretty tired though. I had snacks in my bag, but I was too tired to eat them if that makes sense. But if we had planned in advance to picnic at the site, I think things would have been different.
Bring a base camp person or two. Bring someone along who isn’t going to do the walk and can just hang out near center stage to catch anything our team might miss. It would also be helpful if this person could hang on to extra stuff like the future cooler that will hold our lunches.
What do you do when you are doing a 5k? What sort of extra supplies do you bring?
Tomorrow is the day I say no to sugar, no to gluten, no to soy, no to dairy, and YES to a healthy gut. I will be starting my food elimination diet for the next 3 weeks+. My naturopath describes the RepairVite program as a cross between the Paleo and Autoimmune Protocol diets.
It should be known that I had a s’mores with breakfast and an ice cream sundae for dessert tonight. Seven thirty p.m. was my cut off time. Not only am I starting this crazy gut-repairing diet tomorrow but I also have to go in for labs first thing in the morning. I have to fast for 12 hours. The fasting is a piece of cake; I can drink water. But the piece of cake that I will no longer be able to eat for three weeks will be missed…I think. I hear that a lot of people who give up sugar actually don’t crave it anymore. I am pretty sure I have a sugar addiction which is dangerous because Continue reading →