Introduction...

I kind of missed the boat and didn't bother to introduce myself. I am 25 years old and have had lupus for about 7 years. Beginning in 2003, my senior year of undergrad, I did a year and 3 months of pulse cytoxan because of huge amounts of neurological degeneration, and significant weight loss amongst other things.. I went into remission on the cytoxan and began taking 3000mg/day of cellcept for a year until i got an infection that landed me in the hospital and was pulled off of it. I have taken prednisone for 7 years as well as plaquenil. I have a mood disorder (completely stable since May 2007, no major episodes) and suprisingly low amounts of prednisone can make me agitated and even suicidal (funny thing is that when I get IV pulse steroids or IM injections I have no mood problems... riddle me that!)

I try to be as active as possible because that has been a huge weapon against pain, lupus symptoms, and prednisone weight gain. However, in the last 2 years I have gained weight- though I am not overweight, I struggle with ALL of it being on my stomach... My rheum and I added methotrexate a few months ago because the symptoms from 7.5mg prednisone were too much- sweating, nightmares, moodiness, on top of all the usual culprits. (A little bit goes a LOONNG way with me. It makes me feel like a pansy or something when I complain about the side effects but I have always been kind of a lightweight). Anyhow, I felt a ton better after about 2 weeks of injections except the day of/day after nausea that was helped with zofran and as agreed upon I began to decrease the prednisone. Once I got to 4mg I started going about 1/2mg approx every 3 weeks. I was overjoyed that I didn't feel like a crazy person anymore and my skin was getting back its elasticity among other things...

A little more about me, I am finishing up my PhD in engineering in about a year, I am a very stubborn person and I know I can make it through whatever comes at me because of all of this mess. That's about all for now so I can get some work done before bed. Nice to meet you all.

Take care
Sharky

Hi Sharky!

 

Welcome! Yeah, it's fantastic that the exercise is working in your favour. I had a year of exercise back in 2004 where I was in really good shape. I was able to handle a serious cardio workout and weights.  Then it all went to crap..... I can't manage more than about 20 minutes on the bike now. I hope to get back to the place I was at in 2004.

 

All the best to you with your studies!  Sounds like a lot of work!!!

 

Ginny

Rosie-
I am female- haha I should have mention that somewhere since grad degrees in engineering are almost all male... I actually like it better because 1) there is no catty, hormonal, girl-fight type competition and 2) most of the other grad students are afraid of girls so i can get away with whatever i want! and in a few short months (though it seems like forever!) I will have a PhD in chemical engineering.

I am very lucky to be as active as I am though excessive fatigue has made things harder lately. I also realize that I push myself harder than the average perfectionist. I know the stress is getting to me but it is still hard to hold back...

Serina-
I'm sorry you weren't able to get your masters but honestly, you never know what tomorrow will bring.. One thing that is a HUGE bonus for me is that if you do a PhD in engineering your tuition is paid for and you get insurance and a small stipend to live off of. Though grad studnets make basically no money and spend tons of time in the lab, the health insurance is the BEST anyone could imagine. It covers everything!

I am excited to be making big money some day soon so I can share the wealth. I know it sounds lame, but when I am in a stable, sound position financially, I like nothing more than to give random gifts. One only needs so much "stuff" (and I cant stand clutter! lol).

Ginny-
I hope that you are able to go little by little and get some of the stamina you lost. It is really devestating to feel like you can't move- and super boring! My rheumatologist always asks me how much excercise i am getting (not just because the prednisone is getting me GIANT!) because the burst of energy I get from it and how much it helps my joints.

Alright. Time to take the dog out.

Sharky

Lynnwood-

a SUPER nerd, eh!? I am impressed by anyone who can handle computer engineering- I have had to write a significant amount of code in C++ and Matlab and though I am a huge fan of programming logic, debugging my own code is a nightmare and always results in procrastination... I was so afraid I was not going to get to grad school or even live until the end of undergrad because I couldn't read and had almost no balance or motor control by the summer before my senior year. The aggressive cytoxan treatment saved my life and my nervous system. I do still have some balance defects and some trouble concentrating- along with the ever-embarrassing hand tremors, but I truly realize I have been given another chance and plan to do everything I can to do as much good as I can while I am still here.

This is going to be a really hard term for me as I am teaching 2 four hour labs a week in addition to research, plus all the stuff that comes with teaching. I hope to be able to support others as well as to complain a bit to those who "get it" in both the academic and the lupus sense.

Take care

Alright. Time to take the dog out.

Sharky

I agree with you energy and attitude, and you are the first person to indicate to me that I still have a chance to get that masters degree.  You are right, there is always a chance.  One of my favorite people here, studied for her masters when she was older than i am.  I am 62.  maybe this disease will go into remission for me.  It has happened before.  I had simply given up, and accepted my position in life, when this flare started.  Certainly can't do it today.  I can't even sit up for more than a few minutes  without pain.

Thank you for the hope you inspired.

Hester

Pat-
Nice to meet you too!

Energy is definately a state of mind for me because if it was a physical state for me, I would be no fun, haha. :)

I look forward to getting to know you.