Finally Giving In...

When I was diagnosed with lupus I was still in high school and while  it caused me some pain, I always managed to keep a job. Well I say always, it was only nine months after I finished high school, when I had started college full time and was working as an administrative assistant and hostess part time, that I had my pulmonary emboli and my first real lupus flare. 

It knocked me off my ass. 

I had no idea that it could be that bad. I quit my jobs and dropped out of school as I had missed far too much to make it up and was in too much pain to go to class. It sucked. I didn't know what to do with myself; I was depressed and I felt useless. I spent my time sitting on my mother's couch watching TV. She was understanding and tried very hard to make my life better, easier, not so shitty.

Six months later my boyfriend asked me to move in with him and into a friend's house with a bunch of roommates. He understood that I was sick, but I don't think he understood how sick I was. I spent all of my time in our bedroom, in bed, watching TV, having friends over, smoking lots of pot. I was constantly nauseous and ate nothing but turkey and cheese sandwiches on white bread.  Nothing else would stay down.  I lost sixty pounds that year.  My boyfriend also got that I wasn't able to work and was okay with supporting us...sort of.  We had to move back in with his parents three months into our little domestic experiment because although he brought home twice the rent in one week, he also spent all of it on pot and various other illegal substances.  So, I relocated my staying in bed watching TV routine to his parents house and we continued on that way for another four months or so.

That was when my flare finally let up.  I found the right doctor and the right combination of pills and suddenly I was a (semi) normal person again.  I found myself a job that was flexible with my hours and understanding that I was still sick and still had bad days.  I had tons of sick time and they let me take personal days, vacation days, and sick days whenever I needed it.  Also, being an administrative assistant isn't very physically demanding anyway.  I bought a car and made plans to go back to school in the fall.  It was all very rash and I didn't take light steps, I just jumped in and didn't worry about how I might feel in a few months.  It was good that I did because that not-so-sick period lasted for two and a half years.

Ironically, just as things were looking up in the health department, my relationship was falling apart.  I was realizing that I wanted more than to sit around and watch TV and smoke pot.  My boyfriend lost his job because he was an idiot and had to take a part time job making a paltry salary.  Suddenly I was the head of the household and he was just partying all the time.  No good.  He wanted to be twenty one and have no real responsibility.  I wanted to start a life, to have a nice apartment, not to have some guy sleeping on the couch everyday because they were up all night the night before.  Not to live in a party house.  

So I moved back into my mom's and we remained friends.  The Fall '04 semester I started school again and dove into my studies, keeping a 4.0 while working 35 hours a week.  I was feeling okay, achy, but still able to pull it all off.  I graduated with my Associates in 2006 and started at Temple University the following semester.  I also moved in with BF that August.  And was fired from my great, flexible job at the end of September.  It wasn't working out for either me or the company; the job had grown to be too big for a part timer and I couldn't work any more hours.  Luckily unemployment made up the difference, because I was making crap to begin with and when you take away a third of a crappy income and your boyfriend makes more than three times what you did, it doesn't matter so much.  So, I just took it as two semesters of hard concentration on my schoolwork and keeping a nice house. Which I did for about three months.

The 'keeping house' bit ended that January, when the baby got a stomach virus.  Now I know I've mentioned him bringing things home before an let me just be clear, I understand that kids will always bring things home, especially daycare kids, and I don't harbor anykind of resentment that he gets me sick.  I could not kiss and hug him and give him sips of my soda, but that would just be awful.  

So anyway, we all got the stomach bug.  BF was over it in two days, the little man got over it in a couple weeks and three months later I finally shook off the last of it.  Those three months were awful. Any massive immune response like that kicks my autoimmune system into overdrive too and my lupus flares like crazy.  I was sick.  Sick as hell.  I had trouble just holding my school schedule together, but I did it (and kept that 4.0).  It sucked.  I was just starting out in the greatest relationship of my life; I had been fun and sexy and happy and then suddenly I was having trouble just moving around.  What a let down for him!

That flare still hasn't ended and it seems to have kicked the fibromyalgia into serious action.  This time I've gained forty pounds instead of losing weight; I needed to gain weight (I looked sickly thin at 110 pounds, even on my little 5'4" frame), but I would've been happier with twenty pounds.  I tried to work last summer.  I had a job from May through late September.  I soon found that I had no time or energy for BF or the little man or anything but school and work, and I was doing a bad job at both of those too.  So I quit.  School was more important as I was just a year from a degree.

The degree part worked out.  But there's no career to go along with it.  

I couldn't get state certified because I couldn't keep up with the forty+ hours a week student teaching job that was required.  I thought that I could get a job at an online high school, as new ones are popping up everyday, but though they're not public schools, which have to hire state certified teachers, they still want that certificate.  So now I'm stuck.  I can't use the degree that I have to start paying for in six months.  I have a new, very debilitating disease.  I can't take a job back in my old role of administrative assistant because I'm the crappiest employee anyone would want; I'm foggy all morning; I get sick all the time; I miss days; I'm just unreliable.

So I did what I've been avoiding doing since that pulmonary embolus - I finally filed for disability.  Even if I get it I won't be getting enough to really make any difference, but it will help.  I hate it.  I don't want it.  I want a fucking job.  It's incredibly frustrating to feel this useless.  BF is understanding, but still thinks that I need to work, if not for our budget, for my state of mind.  Being in this house all the time is depressing.  It's boring.  It's just bad for everyone; me, him, the little man.  I need to be better.  To be a better girlfriend, to be a better mom, to be a better member of society.  Everyday I feel more isolated and depressed by my surroundings.  I anxiously await BF's arrival from work every evening, his companionship and the days when the little man is here are the only things that keep me from going over the edge.  Ugh.  This wasn't supposed to be quite this depressing.  But I guess going on disability is inherently depressing.  It feels like giving up, giving in.  Deep down I know that I will get better, I will work to get past this.  To fulfill that dream of teaching.  But for now it just sucks.  I just spent an hour filling out a packet detailing everything that I could once do but can't anymore; what I can and can't do; where/how bad/how frequent my pain is; how bad/how frequent my fatigue is.  Give me twelve pages of questions that forced me to detail my life now and compare it to what I once had and I guess I'm bound to be depressed.  

Hopefully the people at the disability office won't deny me and make all of this awful examination of how much my life has changed turn out to be for nothing.


  1. I know how you feel. Having to go on disability felt so awful to me. I was only able to fulfill my teaching "career" for almost 3 years before my doctor forced me to quit because I was so horribly sick my third year. I was teaching, going to grad school party time, and had a bf, not to mention trying to keep a social life back then. No wonder my body just couldn't take it!! But, as much as I wish I could still be teaching, I know I would probably be dead if I hadn't listened to my doctor.

    I know filing for disability really hurts the pride and makes you feel useless. But thank goodness it is there. And, maybe when you feel up to it, you can get a part time job doing something. I know on disability, you can make a certain amount of money before they will question your ability to work. Maybe you can go to area schools and ask if you can put up flyers for tutoring. You don't necessarily need a certification for that! Keep your chin up, though. Things do get better, even if it takes awhile!

  2. Ummm,that was supposed to be going to grad school "part" time, not party time. LOL