What was supposed to be a restful weekend turned out to be pretty busy, and "Pee Day" didn't go exactly as planned. We had planned to spend the day at home watching the Pro Bowl on TV so that I could be home and collect my urine samples. The day prior, however, my cousin called me to see if I wanted 2 free Pro Bowl tickets that she had won and had no interest in using (thanks, cuz!). Hubby had been wanting to go, so I said we'd be happy to use them. I made sure to empty my bladder before leaving for the stadium and left my pee jug at home in the fridge. I wasn't sure what I would do if I had to pee while we were away from the house, but seeing as I usually go the whole day at work without using the bathroom, I thought I'd be okay. While at the game, I didn't drink anything just to be safe. We ended up leaving after the 3rd quarter...not because I had to pee, but because the game really wasn't that exciting. At the end of the day, the 24-hour pee collection, really wasn't as bad as I thought it was going to be. It took some planning ahead, but other than that, it went pretty smoothly.
I did my collection from 7:00 am Sunday to 7:00 am Monday and dropped off the sample on my way to work this morning. Now I just have to wait for the results...
- a little lupie -
Monday, January 31, 2011
Thursday, January 27, 2011
What a Pill!
"You have lupus...but with medication and treatment, you should be able to live a full life."
When I got the diagnosis, I don't know what scared me more, the word "lupus" or "medication". You see, despite the fact that once upon a time I wanted to be a pharmacist, I really shy away from taking any type of medication or drugs. The primary reason for this is because I can't swallow pills! Physically, yes, I know I swallow food all the time, but psychologically, it freaks me out! I think it is just the thought of swallowing something whole without chewing it.
Every time I need to take medicine, I'll need to either ask for the liquid form or if it isn't available, I'll ask the pharmacist if it is okay to crush or chew the medicine first. I've been lucky in that most of the medication I've had to take can be crushed, but the taste is usually horrible and makes taking it a real pill! (pun intended, har har!)
Anyways, the thought of having to take a number of pills every day for the rest of my life seriously had me worried. When Dr. K told me what medications he was prescribing me, my first question was, "Are they all pills?" When I told him about my situation, he said that I would need to learn how because it could be a problem. He even suggested seeing a speech pathologist to help. I will basically be taking pills every day for the rest of my life.
Luckily, both the hydroxychloroquine and prednisone he prescribed can be crushed, so I have been chewing them before swallowing. They are both bitter, but not as bad as others I have tasted. I'm slowly working on getting myself to swallow the pills whole. Right now I can do the prednisone and my levothyroxine (sometimes - I tend to chew this one because it is first thing in the morning and it isn't bitter, so I don't mind as much). Eventually I will work my way up to the hydroxychloroquine, which is about the size of a children's chewable Tylenol.
Maybe I should make a goal for myself. Life would be so much easier if I could just swallow my medication...
- a little lupie -
When I got the diagnosis, I don't know what scared me more, the word "lupus" or "medication". You see, despite the fact that once upon a time I wanted to be a pharmacist, I really shy away from taking any type of medication or drugs. The primary reason for this is because I can't swallow pills! Physically, yes, I know I swallow food all the time, but psychologically, it freaks me out! I think it is just the thought of swallowing something whole without chewing it.
Every time I need to take medicine, I'll need to either ask for the liquid form or if it isn't available, I'll ask the pharmacist if it is okay to crush or chew the medicine first. I've been lucky in that most of the medication I've had to take can be crushed, but the taste is usually horrible and makes taking it a real pill! (pun intended, har har!)
Anyways, the thought of having to take a number of pills every day for the rest of my life seriously had me worried. When Dr. K told me what medications he was prescribing me, my first question was, "Are they all pills?" When I told him about my situation, he said that I would need to learn how because it could be a problem. He even suggested seeing a speech pathologist to help. I will basically be taking pills every day for the rest of my life.
Luckily, both the hydroxychloroquine and prednisone he prescribed can be crushed, so I have been chewing them before swallowing. They are both bitter, but not as bad as others I have tasted. I'm slowly working on getting myself to swallow the pills whole. Right now I can do the prednisone and my levothyroxine (sometimes - I tend to chew this one because it is first thing in the morning and it isn't bitter, so I don't mind as much). Eventually I will work my way up to the hydroxychloroquine, which is about the size of a children's chewable Tylenol.
Maybe I should make a goal for myself. Life would be so much easier if I could just swallow my medication...
- a little lupie -
Wednesday, January 26, 2011
It's not Orange Juice!
I went back to Dr. C today to do more laboratory tests and make sure my bladder infection was cleared up. The good news is that the infection is gone. The bad news is that there was still protein in my pee. Dr. C had noticed it in my earlier tests but was hoping that it was due to my infection and dehydration.
Low levels of protein in urine is normal, but high levels can indicate kidney disease. With my recent lupus diagnosis, there is the fear that the lupus is attacking and destroying my kidneys (lupus nephritis).
In order to measure how much protein is in my pee, I'll need to do a 24-hr collection. So instead of peeing in a cup, I get a big orange jug to carry around all day. Well, really, I need to keep it in the refridgerator. Hubby is a little wary of this and wants to get me a special biohazard fridge. I can't say I blame him...LOL.
We've planned "pee day" to be on Sunday so that I can relax and do my collections at home. I really doubt my co-workers would appreciate me storing my pee jug in the fridge at work...
- a little lupie -
Low levels of protein in urine is normal, but high levels can indicate kidney disease. With my recent lupus diagnosis, there is the fear that the lupus is attacking and destroying my kidneys (lupus nephritis).
In order to measure how much protein is in my pee, I'll need to do a 24-hr collection. So instead of peeing in a cup, I get a big orange jug to carry around all day. Well, really, I need to keep it in the refridgerator. Hubby is a little wary of this and wants to get me a special biohazard fridge. I can't say I blame him...LOL.
We've planned "pee day" to be on Sunday so that I can relax and do my collections at home. I really doubt my co-workers would appreciate me storing my pee jug in the fridge at work...
- a little lupie -
Tuesday, January 25, 2011
My New BFFN (Best Friend For Now)
Oh, Mr. Prednisone...what would I do without you?
After my first dose of prednisone, I felt better almost immediately. My joints weren't as achy, I had more energy, and my appetite kicked in. Boy, did my appetite kick in. I'm suddenly always hungry. When I eat, I don't get full -- I just get tired of the physical act of eating or stop because everyone else is done eating.
Overall, though, I am feeling back to "normal"...maybe a little tired, but not fatigued like I was when I was flaring. I usually do not like to take drugs, but these little white pills have helped make me feel like myself again. There was a point during my flare when I didn't think I'd ever want to get out of bed and do anything again. I'm happy to say that has passed and I am finally looking forward to doing things.
I'm grateful to the prednisone for calming my flare, but I am still scared of the side effects. I've already experienced some of the side effects, including weight gain, weak thigh muscles, and heart palpitations. While prednisone is my best friend right now, I hope I'll be able to say goodbye soon...
-a little lupie -
After my first dose of prednisone, I felt better almost immediately. My joints weren't as achy, I had more energy, and my appetite kicked in. Boy, did my appetite kick in. I'm suddenly always hungry. When I eat, I don't get full -- I just get tired of the physical act of eating or stop because everyone else is done eating.
Overall, though, I am feeling back to "normal"...maybe a little tired, but not fatigued like I was when I was flaring. I usually do not like to take drugs, but these little white pills have helped make me feel like myself again. There was a point during my flare when I didn't think I'd ever want to get out of bed and do anything again. I'm happy to say that has passed and I am finally looking forward to doing things.
I'm grateful to the prednisone for calming my flare, but I am still scared of the side effects. I've already experienced some of the side effects, including weight gain, weak thigh muscles, and heart palpitations. While prednisone is my best friend right now, I hope I'll be able to say goodbye soon...
-a little lupie -
My New BFF
I went to see the rheumatologist (Dr. K) a few days after my initial diagnosis (I was really lucky to get in as soon as I did...I hear it is often a month + wait to get in to see a specialist because of the shortage of doctors in Hawaii). He reviewed my medical records and lab results that Dr. C had sent over and confirmed her lupus diagnosis. He asked me some questions about my symptoms and medical history, gave me a quick physical where he examined my joints, and talked to me about treatment. He also sent me to get more lab tests done to help determine the extent and severity of my lupus.
Dr. K put me on 400 mg of hydroxychloroquine (plaquenil), an anti-malarial medicine that has been shown to be effective in slowing down the tissue damage caused by rheumatic diseases such as lupus or rheumatoid arthritis (though they're not sure exactly how it works). He told me that the medicine is relatively low risk and would decrease my chances of dying from lupus by 50%. The biggest side effect is that can cause eye problems, so it will be important for me to see an opthalmologist every 6 months. Other common side effects include nausea, stomach cramps, and skin rashes. Dr. K said most patients with lupus take this medicine and that unless I have a bad reaction to it, I will probably be on it for the rest of my life.
Unfortunately, the hydroxychloroquine takes 6-8 weeks to kick-in, so he also prescribed prednisone to calm my symptoms and help me feel better sooner. Prednisone is a steroid with a lot of undesirable side effects, which include weight gain, "moon face," insomnia, mood swings, bruising, and indigestion. If you are on it long-term, you also run the risk of developing osteoporosis or glaucoma/cataracts. It is important not to stop prednisone too quickly or you will experience withdrawal symptoms such as nausea, vomiting, pain, fever, and/or a flare up of the disease. Dr. K started me on 10 mg, daily but will monitor me to see if we can slowly bring that down. Because of the adverse side effects, I hope I don't have to stay on it for very long.
Dr. K talked to me a little more and said that I would need to see him every couple of weeks for monitoring so that he could adjust my treatment plan and medications. Eventually we'll be able to space out the appointments more and hopefully I'll only need to see him every couple months. He did tell me that I needed to come see him as soon as I don't feel well, though. With all the time I'll spend in his office, Dr. K may be my new BFF. Sadly, I'll probably see him more than I see my real friends.
He asked if I had any questions, but I didn't really. I think I am still a little numb and in my state of shock from the sudden diagnosis. I had read about the disease on the Internet, but because it seems as though there are so many unknowns with the disease, it is hard to ask questions and get clear answers. He did suggest that I look into joining a support group to talk to others who are going through the same thing. I think I'll continue researching and come back prepared with a list of questions for my next visit.
- a little lupie -
Dr. K put me on 400 mg of hydroxychloroquine (plaquenil), an anti-malarial medicine that has been shown to be effective in slowing down the tissue damage caused by rheumatic diseases such as lupus or rheumatoid arthritis (though they're not sure exactly how it works). He told me that the medicine is relatively low risk and would decrease my chances of dying from lupus by 50%. The biggest side effect is that can cause eye problems, so it will be important for me to see an opthalmologist every 6 months. Other common side effects include nausea, stomach cramps, and skin rashes. Dr. K said most patients with lupus take this medicine and that unless I have a bad reaction to it, I will probably be on it for the rest of my life.
Unfortunately, the hydroxychloroquine takes 6-8 weeks to kick-in, so he also prescribed prednisone to calm my symptoms and help me feel better sooner. Prednisone is a steroid with a lot of undesirable side effects, which include weight gain, "moon face," insomnia, mood swings, bruising, and indigestion. If you are on it long-term, you also run the risk of developing osteoporosis or glaucoma/cataracts. It is important not to stop prednisone too quickly or you will experience withdrawal symptoms such as nausea, vomiting, pain, fever, and/or a flare up of the disease. Dr. K started me on 10 mg, daily but will monitor me to see if we can slowly bring that down. Because of the adverse side effects, I hope I don't have to stay on it for very long.
Dr. K talked to me a little more and said that I would need to see him every couple of weeks for monitoring so that he could adjust my treatment plan and medications. Eventually we'll be able to space out the appointments more and hopefully I'll only need to see him every couple months. He did tell me that I needed to come see him as soon as I don't feel well, though. With all the time I'll spend in his office, Dr. K may be my new BFF. Sadly, I'll probably see him more than I see my real friends.
He asked if I had any questions, but I didn't really. I think I am still a little numb and in my state of shock from the sudden diagnosis. I had read about the disease on the Internet, but because it seems as though there are so many unknowns with the disease, it is hard to ask questions and get clear answers. He did suggest that I look into joining a support group to talk to others who are going through the same thing. I think I'll continue researching and come back prepared with a list of questions for my next visit.
- a little lupie -
My First Flare and Initial Diagnosis
*Warning* This is long and may be a little TMI for some...
About a month or two ago, I had lower back pain and joint pain so bad that it was difficult for me to walk or do everyday activities. I was always tired. My hair was shedding a lot and I was noticing the hair on my head thinning out. I had a scratch or something on the roof of my mouth. My eyes would get extremely dry and painful, and I couldn't wear my contacts more than a few hours. I would lose my train of thought and blank out on common words. I felt like my body was falling apart on me. I started wondering, "What is wrong with me?!" but I attributed it all to getting older (my 30th birthday was coming up, and I had heard that your body just goes downhill from there).
I had just started a new job after being unemployed for 5 months and was still stressed about my financial situation. The holidays were in full swing, but I couldn't get into the spirit of the season. I stayed up late on New Year's Eve to ring in 2011 and burn fireworks. I wasn't feeling great, but I was okay.
On January 2nd, I woke up and watched some football with the hubby. Suddenly, I got a horrible stomach ache. I went to use the bathroom, but the stomach cramps remained. I tried resting, but the stomach pains got worse. I ended up going through a cycle of extreme stomach cramping and short spurts of diarrhea. It got so bad that I was lying down on the bathroom floor between using the bathroom because going back and forth from the bed was too exhausting. Finally, the diarrhea subsided and I made it back to bed to try and get some rest, but I kept waking up due to the stomach cramps. I lost my sense of time, but I would say I'd get an extreme cramp about every half hour. President Obama was in town this week, and for some reason, I thought that every time I changed position was a matter of national security (does this count as hallucinations?), so I tried to move as little as possible. Hubby came to check on me and brought me some water to drink, but I couldn't keep it down. It was a horrible night. It was the sickest I have ever been.
At first we considered blaming it on food poisoning from the raw fish or raw oysters I had on New Year's, but the timing didn't work out and my husband had eaten the same things and was not sick. Then we thought I must have gotten some kind of stomach virus. I was afraid I had gotten the Norwalk virus that is common on cruise ships. I figured I just had to let it pass, so I stayed in bed the next few days to wait it out. I was so tired I could not do anything. Watching television was too much effort, and I ended up just sleeping all day. I had no appetite and the smell or thought of food made me nauseated. When I tried to eat a little something, it would just come right back up. I lost 10 pounds in just a few days.
After a few days, I was able to keep liquids down and managed a few bites of food. I still didn't have an appetite, and when I did eat, things tasted funny. The "scratch" on the roof of my mouth had turned into a big sore, and it hurt every time I tried to eat or drink anything. It had been almost 2 weeks and I had barely eaten a thing.
I was so weak and tired. It took all I had just to get out of bed in the morning. I tried to go back to work after a week since I didn't want to lose my new job. It was so hard to make it through the day. By lunch time I was so fatigued that just sitting at my desk was too much effort. My office doesn't have a lounge, so I considered crawling under my desk just to lay down. I ended up walking 15 minutes to my car just so I could lay down for a little while.
After a few more days, I still wasn't getting better, so I decided to go to the doctor. I had been putting it off because I kept thinking it would pass and I just needed to rest. The sore in my mouth was really bothering me, though, and preventing me from eating. I thought that if I could fix that, I could eat, and then I would get my energy back and be all better.
When I spoke to my primary care physician (Dr. C) and told her what was going on and all the symptoms I had, she had a suspicion that there may be some type of rheumatological issue. She decided to run some laboratory tests. The test showed that my white blood cell and red blood cell counts were extremely low. I also had an extremely high ANA (anti-nuclear antibody) count, which is a non-specific indication of autoimmune disease.
The next day we got more results back, and my anti-double-stranded DNA antibody count indicated lupus. Anti-dsDNA is a more specific test for lupus (SLE - systemic lupus erythematosus), as it is found in 70% of cases, whereas they appear in only 0.5% of people without SLE. At this point, Dr. C referred me to a specialist (Dr. K) who could confirm or deny her initial diagnosis.
In addition to the lupus, the laboratory tests showed my kidneys were only functioning at about 40%. Dr C thought it may have been due to dehydration, so she gave me an IV for the next 3 days. Kidney function improved to about 50%, but they still weren't where it should be. She also said I had a bladder infection and mild pancreatitis (inflammation of the pancreas) and wanted me to go in for a CT scan to make sure everything was alright. Unfortunately, I wasn't able to do the CT scan because of my kidneys, so she sent me to get an ultrasound. The ultrasound came back showing sludge in my gallbladder and lesions on my liver. I was then sent to get a HIDA scan for my gallbladder and an MRI to check my liver. Luckily both of those results were negative.
I couldn't believe that there were so many things wrong with me! From what I thought was getting old and a common stomach bug, I was suddenly a lupie. While I'm not happy I have lupus, at least now I have an explanation for all the things that are going on with my body. They say some people are relieved when they finally get a diagnosis, others go through a period of grieving. I was initially in shock and am in research mode to find out as much as I can about the disease. I'm still not sure what to expect and will just have to take one day at a time.
-a little lupie-
About a month or two ago, I had lower back pain and joint pain so bad that it was difficult for me to walk or do everyday activities. I was always tired. My hair was shedding a lot and I was noticing the hair on my head thinning out. I had a scratch or something on the roof of my mouth. My eyes would get extremely dry and painful, and I couldn't wear my contacts more than a few hours. I would lose my train of thought and blank out on common words. I felt like my body was falling apart on me. I started wondering, "What is wrong with me?!" but I attributed it all to getting older (my 30th birthday was coming up, and I had heard that your body just goes downhill from there).
I had just started a new job after being unemployed for 5 months and was still stressed about my financial situation. The holidays were in full swing, but I couldn't get into the spirit of the season. I stayed up late on New Year's Eve to ring in 2011 and burn fireworks. I wasn't feeling great, but I was okay.
On January 2nd, I woke up and watched some football with the hubby. Suddenly, I got a horrible stomach ache. I went to use the bathroom, but the stomach cramps remained. I tried resting, but the stomach pains got worse. I ended up going through a cycle of extreme stomach cramping and short spurts of diarrhea. It got so bad that I was lying down on the bathroom floor between using the bathroom because going back and forth from the bed was too exhausting. Finally, the diarrhea subsided and I made it back to bed to try and get some rest, but I kept waking up due to the stomach cramps. I lost my sense of time, but I would say I'd get an extreme cramp about every half hour. President Obama was in town this week, and for some reason, I thought that every time I changed position was a matter of national security (does this count as hallucinations?), so I tried to move as little as possible. Hubby came to check on me and brought me some water to drink, but I couldn't keep it down. It was a horrible night. It was the sickest I have ever been.
At first we considered blaming it on food poisoning from the raw fish or raw oysters I had on New Year's, but the timing didn't work out and my husband had eaten the same things and was not sick. Then we thought I must have gotten some kind of stomach virus. I was afraid I had gotten the Norwalk virus that is common on cruise ships. I figured I just had to let it pass, so I stayed in bed the next few days to wait it out. I was so tired I could not do anything. Watching television was too much effort, and I ended up just sleeping all day. I had no appetite and the smell or thought of food made me nauseated. When I tried to eat a little something, it would just come right back up. I lost 10 pounds in just a few days.
After a few days, I was able to keep liquids down and managed a few bites of food. I still didn't have an appetite, and when I did eat, things tasted funny. The "scratch" on the roof of my mouth had turned into a big sore, and it hurt every time I tried to eat or drink anything. It had been almost 2 weeks and I had barely eaten a thing.
I was so weak and tired. It took all I had just to get out of bed in the morning. I tried to go back to work after a week since I didn't want to lose my new job. It was so hard to make it through the day. By lunch time I was so fatigued that just sitting at my desk was too much effort. My office doesn't have a lounge, so I considered crawling under my desk just to lay down. I ended up walking 15 minutes to my car just so I could lay down for a little while.
After a few more days, I still wasn't getting better, so I decided to go to the doctor. I had been putting it off because I kept thinking it would pass and I just needed to rest. The sore in my mouth was really bothering me, though, and preventing me from eating. I thought that if I could fix that, I could eat, and then I would get my energy back and be all better.
When I spoke to my primary care physician (Dr. C) and told her what was going on and all the symptoms I had, she had a suspicion that there may be some type of rheumatological issue. She decided to run some laboratory tests. The test showed that my white blood cell and red blood cell counts were extremely low. I also had an extremely high ANA (anti-nuclear antibody) count, which is a non-specific indication of autoimmune disease.
The next day we got more results back, and my anti-double-stranded DNA antibody count indicated lupus. Anti-dsDNA is a more specific test for lupus (SLE - systemic lupus erythematosus), as it is found in 70% of cases, whereas they appear in only 0.5% of people without SLE. At this point, Dr. C referred me to a specialist (Dr. K) who could confirm or deny her initial diagnosis.
In addition to the lupus, the laboratory tests showed my kidneys were only functioning at about 40%. Dr C thought it may have been due to dehydration, so she gave me an IV for the next 3 days. Kidney function improved to about 50%, but they still weren't where it should be. She also said I had a bladder infection and mild pancreatitis (inflammation of the pancreas) and wanted me to go in for a CT scan to make sure everything was alright. Unfortunately, I wasn't able to do the CT scan because of my kidneys, so she sent me to get an ultrasound. The ultrasound came back showing sludge in my gallbladder and lesions on my liver. I was then sent to get a HIDA scan for my gallbladder and an MRI to check my liver. Luckily both of those results were negative.
I couldn't believe that there were so many things wrong with me! From what I thought was getting old and a common stomach bug, I was suddenly a lupie. While I'm not happy I have lupus, at least now I have an explanation for all the things that are going on with my body. They say some people are relieved when they finally get a diagnosis, others go through a period of grieving. I was initially in shock and am in research mode to find out as much as I can about the disease. I'm still not sure what to expect and will just have to take one day at a time.
-a little lupie-
Monday, January 24, 2011
Just a Little Lupie...
Hello, world. I'm starting this blog to help me deal with my recent lupus diagnosis. I'm not sure who will read it or if anyone would even be interested in reading it, but it will help me document my condition and voice the millions of thoughts floating around in my head.
It has been about a week since I was diagnosed with lupus. At the time, I had heard of the disease but knew absolutely nothing about it. The doctor gave me some handouts and I have been spending a lot of time searching online for more information about it. I also came across discussion boards and blogs from other "lupies" -- as we call ourselves -- that have given me more insight as to how the disease can affect you on a more personal and emotional level. That is part of the reason I have decided to start my own blog. I hope to share the information I learn about lupus, keep you updated on my situation, and hopefully help others who are in similar situations.
- a little lupie -
- a little lupie -
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