Today was sort of a rough morning. I'm a bit stressed about the final projects and papers I have due for class this week, and I haven't been sleeping much. When I woke up this morning at 6:30 after going to sleep at 2:00 AM, I was in a bit of pain. Moving around helped a bit, but I still had a rough time moving around. The all around pain is just about five feet shy of manageable. My hips were in horrible pain when I left for work.
After I left my apartment, I got on the elevator headed to the parking structure, and I saw a dime on the floor. I remember as a child, I'd always be excited about finding a coin. I often considered it to be a lucky day if I picked up that coin and held it with me for the day. However, today, as I stood on the elevator, I looked down at the coin and thought, "I'm really in a lot of pain, and I don't want to pick it up. But it's money. You shouldn't just let money sit on the ground if you see it. It's wasteful." Then I thought of the value judgment of picking up the dime versus what the doctor's bill would be if something went wrong in the process of my picking up the coin. Then I got sad. Seriously, so much thought shouldn't go into picking up a coin.
But that's lupus. You put a lot of thought in virtually everything you do in a day. What will happen to my sugar or salt level if I eat that? Can I really walk that far? Do I need to wear a hat today? Should I go to that party during flu season? Can I really stay up late tonight? Is this fever high enough for me to stay home? It just goes on and on.
Here's hoping for a better mood.
Later Lupies.
LupieKat
Thursday, December 10, 2009
Friday, November 27, 2009
Black Friday
Hi Lupies:
It's Black Friday. That infamous day after Thanksgiving when Americans take to the stores and risk life and limb for bargains. If you have lupus, you probably look at this day with dread especially if you're on a limited income. You know that you should get out there and get bargains in order to afford presents for your loved ones, but it's cold, you're achy and tired, and you know you'll pay for it for the rest of the weekend.
Here's my advice: STAY HOME!
If you're reading my blog, that likely means that you have access to a computer. This means you can shop online. There are great Black Friday deals online. There are also deals that run through Cyber Monday. I work for PriceGrabber.com. We list stores who offer great online deals. It's the perfect place to go to compare prices on the popular Christmas gifts. If you're concerned about shipping costs, there are plenty of stores offering free shipping today. PriceGrabber also carries a list of many stores offering free shipping.
PriceGrabber.com isn't paying me to go on and on like this about the site, aside from my salary that is. I just think that shopping online is the lupie thing to do. Think about it. No standing in long lines until your knees ache. No carrying heavy packages that will make your fibromyalgia act up. No temptation from over salty mall food that will cause you to bloat up for days.
You can just stay home snuggled up in your fleece pj's and get all your shopping done for everyone. So far, I've picked up presents for my mother-in-law, my husband, and my daughter. It took me no longer than twenty minutes online. That's how long it would have taken me to find parking at the mall. I remember there was a day I drove around for an hour. It was enough to make me cry. Never again!
Happy Black Friday Lupies!
Stay Home.
Lupie Kat
It's Black Friday. That infamous day after Thanksgiving when Americans take to the stores and risk life and limb for bargains. If you have lupus, you probably look at this day with dread especially if you're on a limited income. You know that you should get out there and get bargains in order to afford presents for your loved ones, but it's cold, you're achy and tired, and you know you'll pay for it for the rest of the weekend.
Here's my advice: STAY HOME!
If you're reading my blog, that likely means that you have access to a computer. This means you can shop online. There are great Black Friday deals online. There are also deals that run through Cyber Monday. I work for PriceGrabber.com. We list stores who offer great online deals. It's the perfect place to go to compare prices on the popular Christmas gifts. If you're concerned about shipping costs, there are plenty of stores offering free shipping today. PriceGrabber also carries a list of many stores offering free shipping.
PriceGrabber.com isn't paying me to go on and on like this about the site, aside from my salary that is. I just think that shopping online is the lupie thing to do. Think about it. No standing in long lines until your knees ache. No carrying heavy packages that will make your fibromyalgia act up. No temptation from over salty mall food that will cause you to bloat up for days.
You can just stay home snuggled up in your fleece pj's and get all your shopping done for everyone. So far, I've picked up presents for my mother-in-law, my husband, and my daughter. It took me no longer than twenty minutes online. That's how long it would have taken me to find parking at the mall. I remember there was a day I drove around for an hour. It was enough to make me cry. Never again!
Happy Black Friday Lupies!
Stay Home.
Lupie Kat
Tuesday, November 24, 2009
Working With Lupus
Hi Lupies:
It has been a while. With life you sometimes have to let things go in order to deal with other things. I have been in school full time on top of my job, so that has me a bit stretched these days.
My husband Geoff is in St. Louis, so we are doing the long distance thing for now. I have to say that I am truly missing that support system. Aside from missing the company of my husband, he used to help me get around. I'm in pain more often now because I cannot take pain meds and drive. My doctor gave me cream to put on my joints. I'm going to try that out and see how it works for me.
I feel lucky that I am able to do my job. We just had mid-year reviews, and I performed pretty well. Take that lupus!
About.com recently reported a study that shows 92% of patients with lupus were no longer working four years after diagnosis. It's tough to work with lupus. Especially if you have a job that requires lifting or moving. I was at the shoe store about a week ago, and I had this salesperson who was moving very slowly to get my shoes. I was very familiar with the way she moved because I've been in that type of pain. I could not imagine having to stand up and chase after shoes all day with lupus. I think I would be telling customers, "Your shoes are in the back room on the left. I'll be waiting right here!"
How have I managed work all these years with lupus? I forgive myself, and my job is very flexible. My boss understands that sometimes I'll have to work from 9:30 to 6:30 instead of 9:00 to 6:00 because sometimes my body is just going to take a little longer to warm up in the morning. I make sure that my joints don't get cold at work. I dress warmly, and I keep a heating pad at my desk. If laws allowed, I'd have a space heater too. If you can use a space heater a work, make sure you do. It really helps!
I arrange my doctor's appointments such that they make the least impact on my workday as possible. That means either in the morning or evening. Never in the afternoon unless it cannot be helped. That just eats a huge chunk out of your workday. Sometimes I see lupies sacrifice doctor's appointments for work. Health maintenance is imperative to staying healthy with lupus, so if you can, never miss an appointment. Take care of all health problems asap so that they don't affect your work performance.
Working can be a challenge with lupus, but it is possible. Especially if you have a job that isn't physically demanding and allows for flexibility.
Take care Lupies.
LupieKat
It has been a while. With life you sometimes have to let things go in order to deal with other things. I have been in school full time on top of my job, so that has me a bit stretched these days.
My husband Geoff is in St. Louis, so we are doing the long distance thing for now. I have to say that I am truly missing that support system. Aside from missing the company of my husband, he used to help me get around. I'm in pain more often now because I cannot take pain meds and drive. My doctor gave me cream to put on my joints. I'm going to try that out and see how it works for me.
I feel lucky that I am able to do my job. We just had mid-year reviews, and I performed pretty well. Take that lupus!
About.com recently reported a study that shows 92% of patients with lupus were no longer working four years after diagnosis. It's tough to work with lupus. Especially if you have a job that requires lifting or moving. I was at the shoe store about a week ago, and I had this salesperson who was moving very slowly to get my shoes. I was very familiar with the way she moved because I've been in that type of pain. I could not imagine having to stand up and chase after shoes all day with lupus. I think I would be telling customers, "Your shoes are in the back room on the left. I'll be waiting right here!"
How have I managed work all these years with lupus? I forgive myself, and my job is very flexible. My boss understands that sometimes I'll have to work from 9:30 to 6:30 instead of 9:00 to 6:00 because sometimes my body is just going to take a little longer to warm up in the morning. I make sure that my joints don't get cold at work. I dress warmly, and I keep a heating pad at my desk. If laws allowed, I'd have a space heater too. If you can use a space heater a work, make sure you do. It really helps!
I arrange my doctor's appointments such that they make the least impact on my workday as possible. That means either in the morning or evening. Never in the afternoon unless it cannot be helped. That just eats a huge chunk out of your workday. Sometimes I see lupies sacrifice doctor's appointments for work. Health maintenance is imperative to staying healthy with lupus, so if you can, never miss an appointment. Take care of all health problems asap so that they don't affect your work performance.
Working can be a challenge with lupus, but it is possible. Especially if you have a job that isn't physically demanding and allows for flexibility.
Take care Lupies.
LupieKat
Tuesday, July 14, 2009
Doctors Week
Actually, Doctors Week is every week for me it seems. I've been non-stop busy for the past couple of weeks. Geoff and I took Aja up to college this week for orientation, and while we were up there, Geoff's step-father passed away, and we ended up taking him to the airport and driving the 600 miles home without him.
Aside from being sad about the loss of such a wonderful man, I'm upset that I couldn't make it to the services. Geoff wouldn't hear of it, and he's right. I would have done nothing but send myself into a flare if I tried to push myself in order to make it to Virginia in time for the funeral.
Today I'm going to the cardiologist for my check-up. It's good timing because it feels like my heart has a life of its own lately. Tomorrow I have a colonoscopy. I've been having blood in my stool and chronic diarrhea, so the doctor has to check that out.
Since Geoff is out of town, Aja is going to be my ride from the colonoscopy tomorrow. I never understand what the doctor tells me after surgery. Usually Geoff is there to ask questions. I guess that I'm going to have to try to catch up with my doctor when I come back to my senses.
I always try to end with advice relevant to my experience, and I'm having a hard time coming up with something. Oh wait, I got it! I used to have a doctor who used to give me a colonoscopies while I was wide awake. That was the most miserable experience ever. The first time my new doctor gave me a colonoscopy and told me that I would be put to sleep for it, I wanted to go and punch my old doctor in the face. If you're ever offered a choice between pain and comfort, choose comfort.
Take care Lupies.
LupieKat
Tuesday, June 30, 2009
Hi Lupies
I know it has been a while since I've written, but it was a challenge for me to keep on schedule when I sprained my ankle. When it first happened, I did all this research on lupus and injuries. I wondered how an injury would be different for someone with lupus. In all my research, I didn't find anything, so I thought it all would be fine. Then I woke up the next morning.
I was too dizzy to use my crutches when I woke up, so I had to crawl on my knees to get breakfast, or I had to have someone get it for me. That was extremely agitating, but you do what you have to do, right?
I'm off the crutches now, but I'm still in a brace. It looks like I'm anemic again, so my doctor wants me to go into the hematologist again. Loads of fun!
Next week, I'll be on the road. Geoff and I are taking Aja up north for her college orientation. Both of my kids will be away in college. Unbelievable!
Take care Lupies.
LupieKat
Monday, June 8, 2009
Sprained Ankle
Hi Lupies:
I've been having a fun few weeks. Not! After feeling down with the infections, I started to feel better this past Friday. I was so excited about this weekend because I felt well enough to go out and do things.
Friday night, my family and I went out to see "Up". Cute movie. My husband wanted to see "The Hangover" too, but I didn't have enough energy for two movies. The next day, I dressed up for Carnevale at Venice Beach. (Yes, that's how good I was feeling.) I was feeling so happy to feel better, I was determined to make the best of it. My daughter was embarrassed to be seen with me. Sometimes, it's just good to look and be silly. Especially when you're lupie. Saturday night, my husband and I went to the theater to see a musical western. Geoff tried to talk me out of it since I'd gone to Carnevale that day, but I told him I was only at Carnevale for an hour, and I rested for the remainder of the day, so I was good to go.
The theater wasn't a big theater, it was a small independent theater. Right before the show, I thought I'd run to the ladies' room so I wouldn't have to worry about needing to go during the show, I walked through the door to the ladies room and hit the ground because right behind the door, there was a set of steps. They should warn people about this! I ended up spraining my ankle and spending the evening in the Emergency Room. The doctor said I'm going to be on crutches for a month. Woohoo!
Yesterday, I spent the day in a Vicodin haze with my foot elevated. I was bummed because I missed the Dodgers' game. I am missing more than I'm making this year. I was just so tired from the Vicodin. Also, it would have taken a lot of energy to wander around the stadium on crutches. The Dodgers got killed yesterday anyway. It's also just best with lupus and injuries to rest and take care of yourself.
Today, I'm off to work. That should be fun!
Take care Lupies.
LupieKat
Saturday, May 30, 2009
Infections, Infections
Throat and intestinal infections. That's what I have today folks. It's been lots of fun! On the plus side, I'm losing that bothersome last five pounds I've been trying to shake for months.
The hardest part of this is that my brain is tired. Usually, when I'm not feeling well, it's just my body. Now, it's my mind. I'm too tired to read or think. It's a bit frustrating. I always felt that lupus couldn't touch me as long as mentally I'm able to keep up. My husband tells me I'm being hard on myself, and I need to rest. He's probably right.
There are two days left in Lupus Awareness Month. Apparently, I've decided to celebrate Lupus Awareness Month by having lupus. The rest of you, get out there and share your lupiness with the world!
Take care lupies.
LupieKat
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