Summer fun

With this massive heatwave that’s hitting the south, I thought I’d talk a little bit about lupies and the summer. While most of love the sun and love being outside, it’s just not possible to be out for very long without risking a flare up. In this heat, it’s even worse. Just going from 106 degrees outside to my car which is 110 degrees inside and then back inside the house which is 75 degree kills me….and that all happens in just a few seconds! So, my solution has been to go outside in very short bursts and stay inside while I wait for this heatwave to end. Here are some suggestions on how to have fun for short periods outside and longer periods inside.

1. Sit outside under an umbrella or on a porch and read a chapter of your favorite book. It’s not much but it warms you up and you get your daily dose of the outdoors.

2. Have a movie marathon inside – my boyfriend and I watched all the Harry Potter movies this week (I know I’m a dork but he hadn’t seen any of them!)

3. Make a new recipe and savor.

4. Go to the pool! Water is always good to cool off and it lets you stay out longer.

5. Plan activities with your friends like going to a movie or getting dinner. Usually I grab food outside of my house once a week, it’s refreshing!

I’m in a bit of a rush so that’s it for now!

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Published in: on July 30, 2011 at 4:42 pm  Leave a Comment  
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Lost this round

Okay so sickness won last week and I was unable to post a second time like I wanted to. My days consisted of going to work at 8am, coming home at 5, eating dinner, sleeping til 9, eating a snack and night time meds, going to bed for the night and doing it all over again the next day. I’m sure the heat has been contributing to this mini flare, going from 110 degrees to 70-75 degrees in . 2 seconds I don’ ‘think is good for anybody. I’ll post later today, or tomorrow about my attempts to avoid heat sickness and flares from sun. Unfortunately, I did not do well avoiding flares from work. Guess I should’ve taken my own advice better huh?

Published in: on July 24, 2011 at 12:41 pm  Leave a Comment  
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Oops!

I know, I missed posting last week but I’ll make up for it this week with two posts! Exhaustion and pain kept me off the computer for a lot of the week so I’ll talk about that a little bit. Mind you, this is going to be a lot of advice form others as well as my own thoughts on it. It’s mostly common sense. I tend to not follow it and it gets me in lots of trouble.

1) Sleep!! Okay so I know a lot of us have insomnia and can’t sleep well at night but we need to at least try and get a full 8 hours (more or less depending on your body). Set a bed time, especially when you have stuff to do the next day such as work and stick to it. I always say I’m going to bed at a decent hour and then don’t get to bed until an hour later. Therefore, I suggest saying something like “I”m going to bed at 9” if you really want to get to bed by 10.

2) Another tip for sleeping: Do something that makes your brain tired before hopping into bed. I don’t mean TV or mindless video games. Read, play puzzle games like crosswords or sudoku. Engage your mind and tire it out, it’ll help you fall asleep more quickly.

3) Eat every few hours. I get tired when I don’t eat every few hours but I also get tired if I eat too much. What I’ve begun doing, mostly during the work day, is eating about every two hours. Not huge meals mind you. I have waffles (or cookies and milk, I ┬áknow, horrible habit!) before leaving, a yogurt or strawberry breakfast bar or fruit about two hours after getting there, lunch about two hours after that, string cheese, goldfish, cereal or other munchies about two hours after that, then home for dinner. Or if dinner isn’t ready, another snack. This keeps my energy level relatively in control throughout the day. (This is another rule I did not follow this week…)

4) Get up and stretch, don’t sit all day unless you really can’t get out of bed. I know about those days when you’re joints hurt so much you can barely move but for those other days when it’s not excruciatingly painful – get up and move. Even if it’s just 10 minutes of stretching every few hours, do it! It’ll get your circulation going and make you feel a whole lot better later on. At work, get up and stretch out of your seat every few hours. Stretching in your seat is good too, I do it every half hour or so. If you’re on your feet all day at a job such as retail or restaurant workers, stretch whenever you get a chance. My back and hips killed when I’d go long hours without stretching in those positions and you do not want to be in tears and immobile when you get home. You want to be able ot go out and have some fun!

5) If your body is telling you something listen. It took 3 days of waking up with headaches and 1 of waking up with a migraine for me to realize my body wanted me to stay home. When I finally listened, I felt much better the next day. This is probably the tip I ignore the most but really, it’s probably the most important one. Don’t ignore your body! I know we’ve all heard it over and over but you don’t want it to take something really bad to happen in order to believe it.

Once again, I hope this helps at least a little bit! Please e-mail or post any questions you have and I’ll be sure to answer within the week!

Published in: on July 17, 2011 at 12:02 pm  Comments (1)  
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Heigh-ho, Heigh-ho, it’s off to work I go!

So today, I think I’ll discuss how to handle working a full time job with a disability such as lupus or arthritis. Despite the fatigue and horribly achy joints, it is in fact possible to do. I currently intern as a law clerk at the Attorney General’s Office – this means I sit in a chair for 8 hours a day. That 8 hours is sometimes broken up by a very long walking tour through a prison or court and always includes one nice walk to for lunch. If you’ve never worked a full time job before, it will wear you out. If you’re sick and have never done it before, brace yourself for the first few days.

What I have learned over the last two summers is the following:

1) Make sure you tell your bosses you need close parking. Even if they tell all the new employees they have to walk a mile from the parking lot, they should be able to accommodate you in some way. If they expect me to wear heels when my ankles and knees are acting I up, I expect not to have to arrive at my building in tears.

2) Get up and move around throughout the day. Taking a walk down the hall is a good stretch for your joints and muscles and keeps them from tightening when sitting too long. In reality, you should do this whether or not you have a disability. Studies show that sedentary life styles lead to earlier death so get up an move! I always warn my co-workers that I’ll be up and about several times a day so they don’t always wonder where I’m going or get surprised when I leave for seemingly no reason. ┬áThat’s just me though, really it’s none of their business so if you’re not comofortable say anything don’t!

3) Bring a pill box full of ibuprofen or any other anti-inflammatory/headache/body ache meds you need. Stop trying to impress people by being “strong.” If you’re hurting, you’re going to be miserable which in turn makes people not want to interact with you. Turn to a corner, grab you’re water bottle and take one, believe me, no one is watching and if they are they won’t think anything of it.

4) On that note, always bring a water bottle and stay hydrated. When I forget mine, I can’t function as well. My mouth and throat get dry constantly and it’s distracting. It not only takes away from the quality of the project I’m working on, but it makes me not want to be at work at all. It escalates and I start thinking about everything else bothering me. Maybe it’s just me, but keeping little things like this in check helps me a lot.

5) Carry a scarf to throw over your legs if you get cold along with a pair of gloves and a pair of socks. I suffer from Raynaud’s Phenomenon as do a lot of lupus patients. Yea sometimes I look a little goofy with my feet out of my heels and socks on but I’d rather people to walk when I need to. I tend to wear quirky things anyway so at least in my office, it’s not surprising to anyone. Gloves is another thing that might look weird but if it helps, it helps. People will get used to it and not even notice.

6) Some days, no matter what you do you simply feel like crap. That’s what happened to me today. My fatigue and joint pain are way up, my mouth is swollen and my head is hurting. I left early and said I’d be working from home tomorrow. In today’s day and age, telecommuting once in a while is a viable alternative to driving in to the office. Don’t be afraid to ask to leave early and don’t be afraid to ask to work from home if you’re project allows you to do so.

Yea, it’s hard when you have a disability like lupus. Hard doesn’t mean impossible and it is a completely realistic goal to be able to work 40 hours a week like everyone else. It is okay to ask for accommodations, just don’t be scared and make sure you make those you’re asking well aware that you can do the work just as well as anyone else! At the end of the day, you should be proud of yourself for try to control your own life instead of letting your condition control it.

Published in: on July 7, 2011 at 7:47 pm  Leave a Comment  
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Hello world!

Hello all! I’ve moved my blog from blogger to WordPress and hope to update it much more frequently now. Allow me to introduce myself: I am a 24 year old law student about to begin her last year at UNC School of Law. I love helping people of all ages with whatever their problems may be. I have lupus and do a lot of work raising awareness and funds for lupus research. Friends come to me for advice of all matters of life – dating, college, grad school, moving, traveling, everything! I enjoy helping as much as I can and that’s what this blog is about. If you have any subject you specifically want help on, please let me know! I’ll do my best to find a way to help you out along with anyone else who needs it.

For now, I’ll leave my intro. Be sure to check back at least once a week for a new topic as I’ll be participating in the Post A Week 2011 challenge on WordPress. This means every week for the rest of the year there will be a new post, maybe even more frequently then that!

Published in: on July 1, 2011 at 2:00 pm  Comments (4)  
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