Rheumy has told me that once I am up for it, exercise would be beneficial to my health. Since I've been diagnosed, though, my energy level has been low, and I haven't really pushed myself to be very active. I generally get winded after walking a few blocks or walking up one flight of stairs. Lately, with all the stuff I've been doing around the house to get ready for our move, I've noticed that I've gotten a lot weaker. My arms burn from carrying a load of clothes to the washer. I need to rest after vacuuming one room. In general, I move much slower, and it takes me longer to get things done. I'm not sure if this is a result of the lupus or if it is just a result of my inactivity. Maybe I need to push myself a little more, but I don't want to push myself too hard and end up flaring. Almost seems like a catch-22...I guess it's all about balance...
- a little lupie -
Saturday, June 25, 2011
Thursday, June 16, 2011
Lupus Education
So if you remember, May was Lupus Awareness Month. While there are efforts made to raise awareness of the disease, I don't feel like we are doing a good job. I saw a few mentions of "Lupus Awareness" here and there, but a purple ribbon and/or butterfly do little to educate people about what lupus is. It may get people to recognize the term "lupus", but I fear that many are like I was 6 months ago -- clueless about the symptoms, causes, and effects.
The scary part is that you could have lupus and not know it. When I went to the doctor with what I thought was a stomach flu, I had no idea what lupus was. Even after my doctor mentioned it as a possibility, I thought "Pshhh...I don't have lupus!" I knew absolutely nothing about the disease, but I was convinced I couldn't possibly have the scary-sounding disease. Then I went home and did some research to see what this "lupus" was all about. After reading about some of the symptoms and relating to a number of them, the light bulb went on, and I had an inkling that it was lupus. When I got the diagnosis a few days later, I was still a little shocked, but kind of expected it. I was lucky that my doctor recognized the vague symptoms and tested me for it early. For some folks it takes years of not feeling well and dozens of tests and trips to the doctor before they are diagnosed. While no one wants to hear that they have lupus, it provides an explanation for their symptoms and allows them to start managing them. I think that is why it is so important to increase lupus education -- people need to recognize the symptoms so that they can get the help they need.
I am trying to do my part to share my knowledge of the disease and to share first-hand experience as a lupie to educate others, but I feel like there is so much more that needs to be done. If you get a chance, please help me spread the word about lupus!
- a little lupie -
The scary part is that you could have lupus and not know it. When I went to the doctor with what I thought was a stomach flu, I had no idea what lupus was. Even after my doctor mentioned it as a possibility, I thought "Pshhh...I don't have lupus!" I knew absolutely nothing about the disease, but I was convinced I couldn't possibly have the scary-sounding disease. Then I went home and did some research to see what this "lupus" was all about. After reading about some of the symptoms and relating to a number of them, the light bulb went on, and I had an inkling that it was lupus. When I got the diagnosis a few days later, I was still a little shocked, but kind of expected it. I was lucky that my doctor recognized the vague symptoms and tested me for it early. For some folks it takes years of not feeling well and dozens of tests and trips to the doctor before they are diagnosed. While no one wants to hear that they have lupus, it provides an explanation for their symptoms and allows them to start managing them. I think that is why it is so important to increase lupus education -- people need to recognize the symptoms so that they can get the help they need.
I am trying to do my part to share my knowledge of the disease and to share first-hand experience as a lupie to educate others, but I feel like there is so much more that needs to be done. If you get a chance, please help me spread the word about lupus!
- a little lupie -
Wednesday, June 15, 2011
Lupie Braxton
The other day my co-worker mentioned that she was watching Braxton Family Values, and Toni Braxton had announced to her family and the world that she has lupus. As I was getting ready for work yesterday, I saw that the episode was on, so I got a chance to see it.
Toni had been diagnosed with lupus for a few years, but had been urged to keep it a secret because it would have a negative effect on her career. She thought no one would want to hire her if they knew about her condition. In fact, according to her interview with Black Enterprise, lupus is what caused her financial troubles. She was forced to cancel her shows and break contracts because her lupus was flaring up and affecting her heart. The doctors told her she wouldn't be able to handle the hour and a half performances.
She even kept her secret from some of her family, and they never understood why she was so lazy (in their eyes) and tired all the time. If you watch her show, you'll notice her resting and sleeping a lot -- now we know why!
In November, she was being honored by Lupus LA and decided to reveal to the world that she has lupus. She announced "This is what lupus looks like!" Even with the thinning hair and steroid-induced weight gain, she looks great! While she says it was a tough decision to come out about this, she feels it was such a relief.
Thank you, Toni, for having the courage to share your story with us and to helping to give lupus a voice!
- a little lupie -
Toni had been diagnosed with lupus for a few years, but had been urged to keep it a secret because it would have a negative effect on her career. She thought no one would want to hire her if they knew about her condition. In fact, according to her interview with Black Enterprise, lupus is what caused her financial troubles. She was forced to cancel her shows and break contracts because her lupus was flaring up and affecting her heart. The doctors told her she wouldn't be able to handle the hour and a half performances. She even kept her secret from some of her family, and they never understood why she was so lazy (in their eyes) and tired all the time. If you watch her show, you'll notice her resting and sleeping a lot -- now we know why!
In November, she was being honored by Lupus LA and decided to reveal to the world that she has lupus. She announced "This is what lupus looks like!" Even with the thinning hair and steroid-induced weight gain, she looks great! While she says it was a tough decision to come out about this, she feels it was such a relief.
Thank you, Toni, for having the courage to share your story with us and to helping to give lupus a voice!
- a little lupie -
Saturday, June 11, 2011
My Daily Dose
The azathioprine was making my feel nauseated throughout the day, and that's no fun. I've decided to change up my dosing a bit by taking my levothyroxine and prednisone in the morning and my hydroxychloroquine and azathioprine at night so that I can sleep through the nausea. I've also started using the nifty pill box from BFF to help keep me organized and on track throughout the week.
I've been having a hard time taking my calcium three times a day. With so much going on, I often forget about it. I need to find a way to work it into my routine...
I've been having a hard time taking my calcium three times a day. With so much going on, I often forget about it. I need to find a way to work it into my routine...
Wednesday, June 8, 2011
Sunday, June 5, 2011
A Belated Rheumy Update
Yesterday I had my first Rheumy appointment since starting the azathioprine, so I was kind of anxious to see if it was working. I was on a low dosage (50 mg), and I wasn't sure if it was making much of a difference. I've been experiencing some stomach discomfort and nausea, especially when I don't have time to eat breakfast with my meds. I've also still been experiencing joint pain and fatigue, although it may be because I've been busy with the house and haven't been getting my required nine hours of sleep.
My blood test results showed that my Erythrocyte Sedimentation Rate (ESR) was down to 24 mm/hr, the lowest it has been since I was diagnosed with lupus in January! As I mentioned earlier, 20 mm/hr is considered normal for women, so I am not too far off. My red and white blood cell counts were still a little low, but my kidney, pancreas, etc. all looked normal.
We are raising my azathioprine dosage from 50 mg to 75 mg (1-1/2 pills). If my stomach is able to handle that over the next two weeks, then I'll raise my dosage to 100 mg (2 pills). If I experience too much nausea or stomach upset, I should take the highest dosage I can handle. Rheumy thinks that 2 pills should be a good maintenance dosage for me, but said that some patients take 3.
We are also lowering my prednisone dosage from 5 mg to 2.5 mg. If you remember, the last time I tried weening off the 5 mg, I went down 1 mg at a time, and my symptoms came back when I was down to 3 mg. The decision to cut the prednisone more dramatically is because I have been gaining a lot of weight due to it and am now above my normal pre-diagnosis weight. We are also hoping that the azathioprine will help manage my symptoms in the absence of the prednisone.
My next visit is in 4 weeks, so let's hope I keep showing improvement!
- a little lupie -
My blood test results showed that my Erythrocyte Sedimentation Rate (ESR) was down to 24 mm/hr, the lowest it has been since I was diagnosed with lupus in January! As I mentioned earlier, 20 mm/hr is considered normal for women, so I am not too far off. My red and white blood cell counts were still a little low, but my kidney, pancreas, etc. all looked normal.
We are raising my azathioprine dosage from 50 mg to 75 mg (1-1/2 pills). If my stomach is able to handle that over the next two weeks, then I'll raise my dosage to 100 mg (2 pills). If I experience too much nausea or stomach upset, I should take the highest dosage I can handle. Rheumy thinks that 2 pills should be a good maintenance dosage for me, but said that some patients take 3.
We are also lowering my prednisone dosage from 5 mg to 2.5 mg. If you remember, the last time I tried weening off the 5 mg, I went down 1 mg at a time, and my symptoms came back when I was down to 3 mg. The decision to cut the prednisone more dramatically is because I have been gaining a lot of weight due to it and am now above my normal pre-diagnosis weight. We are also hoping that the azathioprine will help manage my symptoms in the absence of the prednisone.
My next visit is in 4 weeks, so let's hope I keep showing improvement!
- a little lupie -
Friday, June 3, 2011
Okay?
Even if you're not suffering from a chronic condition, I'm sure you can relate to the "I'm okay" automatic response when someone asks how you are doing. We live in a culture where it is more of a rhetorical salutation rather than a genuine question. Most times you don't really even wait for a response. Sometimes you really don't want to hear about all of the person's problems, as you are probably dealing with a bunch of your own.
Sometimes saying "I'm okay" is just easier...but it is always nice to get a hug and know that someone understands without you having to say anything and that sometimes it is okay to not be okay.
- a little lupie -
Wednesday, June 1, 2011
A Lupie Home
Now that the deal is done, I can finally share the news that we bought a new home! It has been a dream of ours for a while, but it all happened so suddenly and quickly. We had a relatively short close, so our days were packed with paperwork, inspections, planning, and daydreaming. Because of my lupus, I tried to stay calm and not get too stressed. It is almost ironic to stress about not stressing. I just knew I didn't want to break out in hives like I did the week before our wedding. I think I've done a good job of staying organized, relying on help from others, and not worrying about the little things.
As we look at moving into the home and evaluate some of the changes we need to make, our decisions are already being affected by my condition. We are looking ahead at changing the step-in tub into a walk-in shower with a seat and grip bars. I'm a little torn because it might be nice to have a bathtub to soak in to help ease joint pain. Our bathroom is not big enough for both, so it is something we'll need to think about a little more.
There are also little choices that we've already made such as choosing door levers instead of door knobs, which are hard for me to grasp and turn. They're a little more expensive, but worth it in the long run.
As we think about our fixtures, there are things I know I want to avoid...like this faucet (which we have in our current rental). It is really hard for me to turn on when my joints are acting up.
Sometimes I feel like lupus is like my body getting old at an accelerated pace. Some of these choices are things that most people think about as they get older, but they are rarely the concerns of a 30-year old.
We are very excited about our new home and can't wait to move in and get settled. More updates are sure to come!
- a little lupie -
There are also little choices that we've already made such as choosing door levers instead of door knobs, which are hard for me to grasp and turn. They're a little more expensive, but worth it in the long run.
As we think about our fixtures, there are things I know I want to avoid...like this faucet (which we have in our current rental). It is really hard for me to turn on when my joints are acting up.Sometimes I feel like lupus is like my body getting old at an accelerated pace. Some of these choices are things that most people think about as they get older, but they are rarely the concerns of a 30-year old.
We are very excited about our new home and can't wait to move in and get settled. More updates are sure to come!
- a little lupie -
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