Super Lupie?

Looking at my original schedule this semester, I had a thought. Why is that I feel the need to try and be superwoman all the time? One thing I realized was that I feel the need to do more than most “normal” people in an attempt to show that being sick can’t stop me from doing anything. Maybe not everyone does this but I certainly know some people that do.

I’ve always had a strong motivation and desire to succeed and really, that’s all I thought this was. But then I really thought about it – look at college. The normal enrollment was 16 credits I believe and the maximum you could take without permission was 18. So I took 17 or 18 every semester until my last one when I got seriously sick. I could have graduated in 3 years but I stayed an extra year. Who does that?!? Yea it was fun and I took some really fun and interesting courses that last year but it was really hard work to get to that point. “Normal” people graduate in 4 years, I managed to finish everything in 3. Many of those facing challenges take longer than 4 years. Law school was almost the same way, I keep taking these classes that I know are going to be extremely difficult and taxing but I do it anyway. It’s my last year and I changed my schedule to make it harder without even realizing it. Go me!

I finally fixed everything and made my life a whole lot easier but it definitely made me stop and think whether I do these things because of my own ambition or because I’m sick. Conclusion: both. I will always tell myself I can do better, I can push farther but I will also always want to tell everyone “Hey look what I can do!” in an effort to show that my disability doesn’t run my life. I’ve decided I need to back off on that second one now – I’ve more than proved myself at this point in my life and now it’s time to focus on what’s best for me.

Everyone have a wonderful, safe, and warm week!

Published in: on January 17, 2012 at 10:16 am  Comments (2)  
Tags: , , , , , , , , ,


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  know, 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)  
Tags: , , , , , , , , , , ,

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.  That’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  
Tags: , , , , , , , ,