In my mind, my autoimmune disease, lupus, has so much to do with inflammation. My joints were inflamed and my bones and body hurt. Some nights, I couldn’t grab the covers to pull over me because my fingers were so swollen. My hands just didn’t work. There were times when I couldn’t walk because my knees were so inflamed—swollen and painful. The worst inflammation was during a flare that hospitalized me. I was very sick (vomiting, diarrhea, pain at a 10), and my abdomen swelled to bursting point. Thankfully, I recovered, but I knew something beyond the medication (with its awful side effects) had to be done. I started talking to people, and I started researching online. Because if I couldn’t control the fact that I already had this disease, I could control how much inflammation I was contributing to my body’s system via food choice. Once I learned how different foods affect the body and how some foods are more inflammatory than others, I was able to make better choices for myself.
Every person can take an active role in lessening the inflammation in his/her body. One major way to do this is Continue reading →
I woke up this morning realizing that I was the only human in the house with two dogs. Okay, who am I kidding. I plan my days in advance; I knew the predicament I was in when my head hit the pillow the night before. I was too tired, and I really didn’t want to think about it. I’d figure out the two-dog-dilemma in the morning. I think I was kind of in denial; I was secretly hoping for rain, problem solved! But the rain held off until the afternoon. Problem. not. solved.
We have a canine houseguest this weekend. Over the weekend, my DH and I took some lovely walks together with the dogs; we each had one.
Today is the first time in months that I looked into the mirror and actually recognized the person looking back at me. I am starting to look like my old self; no more chipmunk cheeks or moon face. My face is waning—such a relief. I even said “Why, hello there” out loud to myself.
Lupus really messes with you—in many ways. Everyday my cells go to battle. My immune system is constantly warring with my healthy cells. Lupus has brainwashed my immune system into believing that my healthy cells are the bad guys. To assist in this battle, I have had to send in reinforcements in the form of high dosages of steroids. The drugs I take help to keep my lupus symptoms under control. But the drugs also have side effects–many unfortunately. One of the more visible side effects of corticosteroids is Continue reading →
The month after I was released from the hospital, I noticed that my teeth were getting more sensitive to temperature. I mentioned it to both my rheumie and my dentist in that same month. I had been taking 60mg of prednisone up to that point. I suggested to my rheumie that it was a side effect of the steroids; he said no. My dentist didn’t think it was the steroids either. She said she could give me a treatment for the sensitivity. Sigh… I saw my dentist 6 months later and mentioned to her that I still had some tooth sensitivity, but it wasn’t as bad as before. I mentioned this to her in hopes of starting a discussion about the possible effects of prednisone. I told her that I noticed that my tooth sensitivity decreased as my prednisone dosage decreased.
When I first mentioned my sensitive teeth to my dentist, she recommended that Continue reading →
I was in the hospital for about 2 weeks. And for the majority of my stay, I wasn’t allowed to eat or drink anything; I couldn’t keep anything in/down. I was being fed a “lovely” Gatorade-looking concoction called TPN (total parenteral nutrition) via my IV. I lost a bunch of weight, but I was recovering—slowly.
Towards the end of my stay, as I was getting better, I was finally allowed to eat something. And boy, was I excited to be able to order hospital food! You know I had to be in bad shape to look forward to that.
My doctors started me off on a solid liquid diet—broths, juices, and flavored gelatin. What was weird is that Continue reading →
“…and in the eyes of the people there is the failure; and in the eyes of the hungry there is a growing wrath. In the souls of the people the grapes of wrath are filling and growing heavy, growing heavy for the vintage.” —John Steinbeck’s The Grapes of Wrath
Even though I have had to make significant changes in my lifestyle because of my disease, I do try to maintain my social and intellectual circles as best I can. One of the ways I do this is through my book club. We just finished reading John Steinbeck’s The Grapes of Wrath for our book club. Whoa was that book heavy. There were many messages in this novel, but as I was reading it, I noticed that my foodie feelers perked up each time Steinbeck Continue reading →
Our clean cookie exchange was a delicious success! Everyone brought dozens of clean cookies. I made a pot of Peppermint Hot Cocoa. The movie, Elf, was ready to go in the player. We were set. One member of our party had never watched Elf, so that made it extra fun for us. It’s always fun when one person has never seen a movie that you enjoy so much. It’s fun to hear them laugh and smile at some of your favorite parts in the movie.
The idea was to grab some cookies and hot cocoa to have while watching the movie. However, this is when the party came to a halt. There were four different households in attendance thus the request to bring 4 dozen cookies each. (Omg! I just realized that I had almost 200 cookies in my house at one time! Awesome!) Each household was going home with 4 dozen different cookies. So, as the cookie munching began, all you had to do was Continue reading →
Okay, I had a problem. I needed treats, cookies especially. I don’t have a lot of time, but a girl needs a cookie once in awhile. I think this “problem” came up during afternoon tea. I wondered, “How could I get a good supply of cookies?” And then it hit me…”a cookie exchange!” But it couldn’t be just any cookie exchange; it had to be a “clean” cookie exchange so that I could
Not all at once mind you. Being the English major, I also appreciated the alliteration in 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 →
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?