Usually when I go without writing, it's because I don't feel well. This time it was because my husband wasn't feeling well, and I couldn't write about it. My daughter reads my blog, and we didn't want to worry the kids before we had all the facts. I tried to think about other things, but all I could think about is that my husband could possibly have prostate cancer. He was going through tests, and all I could do was wait and worry.
Well, the waiting is over, and my husband does have prostate cancer. We go in to meet with his doctor tomorrow to discuss options. Fortunately, it was caught early, and his prognosis is likely good.
When I'm stressed like this, I often just want to think about the thing that's stressing me. Right now, all I can think of are ways to take care of my husband. I've researched different treatments for prostate cancer. I have put together questions for his doctor, and I've come up with a new diet I'm hoping to convince my husband to eat.
On top of this all, I have to remember to take care of myself because the last thing we need right now is for me to feel worse than I usually do, so I'm trying really hard to sleep when I'm supposed to sleep, eat when I'm supposed to eat, and take meds when I'm supposed to take meds.
So, I guess that's my advice today. It's so easy to say, "I don't have time for that. I've more important things to do." Don't do that. Take care of yourself, so that you can take care of the ones you love.
On that note, it's past bedtime. I need to practice what I type.
Take care all and Live Lupie!
LupieKat
Monday, November 19, 2007
Thursday, November 8, 2007
Fibromyalgia, Lupus, or Both?
Okay, I just noticed that the link on my last post didn't work. I think Blogger and I aren't getting along right now. Sorry about that.
My new rheumatologist told me that most of my pain was being caused by fibromyalgia. This is not unusual for lupus patients. Actually about 25% of patients with lupus will have fibromyalgia on the side.
Fibromyalgia is a syndrome wherein you have pain in your muscles, joints and bones. It can also cause fatigue and insomnia. With these symptoms, you can see why it can be confused with lupus symptoms. Sometimes fibromyalgia patients may be misdiagnosed with lupus. Another common issue is that lupus patients who have fibromyalgia often don't get treatment for the fibromyalgia. This has been my issue.
Fortunately, I now have a pretty aggressive rheumatologist who has worked to treat the fibromyalgia. She told me to go back to my pain management treatments. She's also started me on a new drug called Lyrica. Since I've been taking Lyrica, I've noticed a tremendous decrease in my symptoms. It has also made me terribly sleepy. I couldn't keep my eyes open when I got home from work last night. I passed out at something like 7:30. This explains why I'm awake at 4:00 a.m. typing my blog.
The lessening of pain symptoms has been nice. I won't say that the pain is completely gone, but it definitely is more manageable.
Take care and have a lupie day.
LupieKat
My new rheumatologist told me that most of my pain was being caused by fibromyalgia. This is not unusual for lupus patients. Actually about 25% of patients with lupus will have fibromyalgia on the side.
Fibromyalgia is a syndrome wherein you have pain in your muscles, joints and bones. It can also cause fatigue and insomnia. With these symptoms, you can see why it can be confused with lupus symptoms. Sometimes fibromyalgia patients may be misdiagnosed with lupus. Another common issue is that lupus patients who have fibromyalgia often don't get treatment for the fibromyalgia. This has been my issue.
Fortunately, I now have a pretty aggressive rheumatologist who has worked to treat the fibromyalgia. She told me to go back to my pain management treatments. She's also started me on a new drug called Lyrica. Since I've been taking Lyrica, I've noticed a tremendous decrease in my symptoms. It has also made me terribly sleepy. I couldn't keep my eyes open when I got home from work last night. I passed out at something like 7:30. This explains why I'm awake at 4:00 a.m. typing my blog.
The lessening of pain symptoms has been nice. I won't say that the pain is completely gone, but it definitely is more manageable.
Take care and have a lupie day.
LupieKat
Tuesday, November 6, 2007
Before Diagnosis... After Diagnosis
I just finished reading a story about Crystal McKinnis. She was sharing her experience of what it's like to deal with lupus before and after diagnosis.
Remember how it felt before you were diagnosed with lupus? I do. I thought I was going crazy. I felt so bad, and my doctor couldn't find a single problem with me. I had a high SED rate, but that was it. I even stopped my part-time job because I was getting sick so much, and my boss couldn't cover for my sick days.
When I was diagnosed with lupus, it was actually a relief. I remember saying to my doctor, "You mean I'm not crazy?"
However, that relief feeling has passed. I'm just ready to figure out a way to get over this now.
If you're interested in reading about Crystal McKinnis, here's the link:
Remember how it felt before you were diagnosed with lupus? I do. I thought I was going crazy. I felt so bad, and my doctor couldn't find a single problem with me. I had a high SED rate, but that was it. I even stopped my part-time job because I was getting sick so much, and my boss couldn't cover for my sick days.
When I was diagnosed with lupus, it was actually a relief. I remember saying to my doctor, "You mean I'm not crazy?"
However, that relief feeling has passed. I'm just ready to figure out a way to get over this now.
If you're interested in reading about Crystal McKinnis, here's the link:
Monday, November 5, 2007
Okay, I did it again
I've been away for a while. I know I said that I'd try to write even when I feel crappy, but apparently, I just suck at that. My niece got married on October 13th, and I flew across the country to be there. It was a quick turnaround. Usually when I travel, I take a day or two to recover before I get on the plane again. I didn't do that this time, and it cost me. I spun myself out into a full blown flare. I felt so bad. I would go to work, but other than that, I did nothing but sleep. My doctor shot me up with steroids and told me to go to bed for a week, but I didn't do that because my boss has a broken hand and I didn't want to abandon him.
I've been doing a lot of sleeping, but I'm hoping to get back on a reasonable blogging schedule soon here. If you don't see me for a while, I hope you understand. Working is taking a lot of energy these days.
Have a lupie day.
LupieKat
I've been doing a lot of sleeping, but I'm hoping to get back on a reasonable blogging schedule soon here. If you don't see me for a while, I hope you understand. Working is taking a lot of energy these days.
Have a lupie day.
LupieKat
Wednesday, October 10, 2007
A Little Help to Get Out of Bed
Okay, so I've been on the Omega-3 pills for two whole days so far, and I have to say that so far, it's not working. I'm sure it takes more time, but I'll keep the world updated of my progress.
Getting up in the morning has been rather difficult the past few days. When I'm lying in bed, I'm okay, but those first few steps in the morning are so painful. One thing that's been helping is a product called Mineral Ice. When I get up and head to the bathroom in the morning, I determine the parts that are hurting, and I apply Mineral Ice on them, and then I'm able to get around and do my exercises.
I guess we'll call that LupieKat's tip for the day!
Have a lupie day.
Katerina
Getting up in the morning has been rather difficult the past few days. When I'm lying in bed, I'm okay, but those first few steps in the morning are so painful. One thing that's been helping is a product called Mineral Ice. When I get up and head to the bathroom in the morning, I determine the parts that are hurting, and I apply Mineral Ice on them, and then I'm able to get around and do my exercises.
I guess we'll call that LupieKat's tip for the day!
Have a lupie day.
Katerina
Monday, October 8, 2007
Is Omega-3 Good for Lupies?
I just finished reading an article that discusses a study using Omega-3 as part of lupus patients' diets to see if it helped improve lupus symptoms. It appears that significant improvement was shown in those who were using fish oils.
There has often been talk that Omega-3 is good for people with lupus for quite a few years, so if I see something labeled Omega-3, I'll pick it up. I actually just packed a snack of walnuts because they were labeled with "Omega-3". My soy milk is also an Omega-3 soy milk.
I have to say that so far, it's not working because I ache like you wouldn't believe this morning. The study did say that improvement was shown in those who used fish oils. Also, there seems to be a minimum dosage requirement.
I think I may try to catch up with Omega-3 fish oil supplements and see how they work. The article said the results spanned 24 weeks. I wonder if it will take a while to notice changes? I'll let you know.
If you're interested in that article, here you go:
Have a great day living lupie!
Lupie Kat
There has often been talk that Omega-3 is good for people with lupus for quite a few years, so if I see something labeled Omega-3, I'll pick it up. I actually just packed a snack of walnuts because they were labeled with "Omega-3". My soy milk is also an Omega-3 soy milk.
I have to say that so far, it's not working because I ache like you wouldn't believe this morning. The study did say that improvement was shown in those who used fish oils. Also, there seems to be a minimum dosage requirement.
I think I may try to catch up with Omega-3 fish oil supplements and see how they work. The article said the results spanned 24 weeks. I wonder if it will take a while to notice changes? I'll let you know.
If you're interested in that article, here you go:
Have a great day living lupie!
Lupie Kat
Tuesday, October 2, 2007
I Want to Stay in Bed Today
I'm very tired and achy today. I want to stay in bed. I think Geoff wants to stay in bed more since he's actually asleep, and I'm not! I'm in that "I'm tired, but it hurts too much to sleep" stage right now. I won't stay in bed because I need to go to work, so I'll drag my butt out of bed as soon as I'm done writing.
I'm getting great e-mail from readers. Some share great news. Some share their struggles. A lot feel isolated. I feel isolated sometimes too. That's why I go to work. One of the reasons I go. Even sometimes at work, I feel isolated. I've been there for over a year, and at this point, I have a nice set of people I can talk to. I think it pretty much took me a year to find people I feel comfortable with. It's very hard for me to reach out and make conversation.
There's this one guy at work that no matter what I say to him, I feel like I'm an idiot when I'm done. The odd thing about it is that he's the one who tries to make conversation with me. He'll say, "How's your day today?" and I'll reply with something completely idiotic and nonsensical like, "I think the sky is blue today." and he'll respond. "Yeah" and walk away. He'll come back again in a few days and say something else and give me another opportunity to look silly. When Geoff's with me, I tend not to talk like an idiot. When Geoff's around, I don't feel nervous, and it's easier for me to express myself. Without Geoff, talking to people is very challenging.
I keep trying though because it's easy for me to feel isolated if I don't. When I feel isolated, I get very depressed, and I want to give up. Sometimes to the verge of feeling suicidal.
My advice for the day. Don't let yourself feel isolated. Reach out and talk to someone. If you can't reach anyone by phone. Send an e-mail. If you're at a loss for who to e-mail, e-mail me. I always write back. Sometimes it may take me a while, but unless your e-mail accidentally went into the spam folder, you'll hear from me.
Take care and keep living lupie!
Katerina
I'm getting great e-mail from readers. Some share great news. Some share their struggles. A lot feel isolated. I feel isolated sometimes too. That's why I go to work. One of the reasons I go. Even sometimes at work, I feel isolated. I've been there for over a year, and at this point, I have a nice set of people I can talk to. I think it pretty much took me a year to find people I feel comfortable with. It's very hard for me to reach out and make conversation.
There's this one guy at work that no matter what I say to him, I feel like I'm an idiot when I'm done. The odd thing about it is that he's the one who tries to make conversation with me. He'll say, "How's your day today?" and I'll reply with something completely idiotic and nonsensical like, "I think the sky is blue today." and he'll respond. "Yeah" and walk away. He'll come back again in a few days and say something else and give me another opportunity to look silly. When Geoff's with me, I tend not to talk like an idiot. When Geoff's around, I don't feel nervous, and it's easier for me to express myself. Without Geoff, talking to people is very challenging.
I keep trying though because it's easy for me to feel isolated if I don't. When I feel isolated, I get very depressed, and I want to give up. Sometimes to the verge of feeling suicidal.
My advice for the day. Don't let yourself feel isolated. Reach out and talk to someone. If you can't reach anyone by phone. Send an e-mail. If you're at a loss for who to e-mail, e-mail me. I always write back. Sometimes it may take me a while, but unless your e-mail accidentally went into the spam folder, you'll hear from me.
Take care and keep living lupie!
Katerina
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