My New Normal

As a teacher, I am lucky to have many holidays off that most people do not get. I am off for at least two weeks during Christmas time, four to five days during Thanksgiving, and of course one whole week during Spring Break. Now, that was great for me as a mom, but not as a person. Either I was babysitting other people's children at work, or mine at home. That is no kind of vacation!

So, I often relied on my ten sick days a year. Before I got sick, these were used for two reasons: kids sick day or my favorite, what I called a stress day. On stress days, I would call in sick and send my kids off to school and do things like go to the mall to shop when it was empty or see a movie when it was empty and pretty much decompress. I often wondered what it would be like if I could do that any or every day.

The past few years, things changed. My ten sick days were used because I WAS SICK and it went from ten or eleven days to over twenty! It got so bad, in January I was forced to take a temporary sick leave. I was hoping that if I stayed home and got away from all the stress at work I would feel better. Think again.

Nowadays, I spend the day in bed. I wake up and send my kids to school. (Disclaimer: I have actually stayed asleep after a long sleepless night and not sent my kids to school a couple of days) Immediately after, I go back to sleep. My two little ones stay with me and my mom comes over to make sure they are taken care of and fed. She also makes sure to wake me up so I could eat. She cleans and washes clothes for me and pretty much waits until my husband gets home from work. Somewhere in between I home school my two little ones from my bed of course. 

Things sure have changed for me and for my kids. Today my daughter was angry because Netflix on our television wasn't working right and I didn't get up right away to fix it. "I wish I didn't have a sick mom that always has to stay in bed!" It truly stabbed me right in the heart-the emotional pain was much worse than the costochondritis pain I already feel in my chest. This disease is ravaging my body but it also affects my poor children. I wish I was the normal mom I once was...the mom who could do it all, but this is my reality-my new normal.

Nobody is reading this blog but I don't care!

I started writing this blog shortly after I was diagnosed with Lupus and I was super gung ho about writing at the time. So, I wrote two posts and stopped. Well, a whole year has gone by and I am going to start this thing again.

Now, one thing I realized is that nobody is reading my blog and I have come to the realization that I don't care. It is somewhat healing to write my feelings down and vent even if noone reads it. What are you going to do?!

Lupus is back like a vengeance right on time with going back to work. I thought I had gotten enough rest during my summer break but no I was wrong. After only 9 days of work, I had to take a day off. Horrible...mostly since my boss the principal has already warned me about taking too many days off as if I hang around at home having pina coladas and watching soaps!

Well, I woke up at 5:30 am and realized that I couldn't move! I couldn't get out of bed. It took every ounce of strength to get out of bed to dress my kids and call in sick and then I just fell in bed and woke up at 4 p.m. Then my hubby came home from work and said, "You shouldn't have stayed home..they gave us breakfast tacos in the morning." Now, this is what truly pisses me off about anyone who doesn't have Lupus! Somehow in his head he figures that I chose to stay home to relax or something.

He just doesn't understand that I don't choose. My body does. One day I feel fine..as if I am a normal mom on the go and then the next day I wake up feeling like I was in a car accident; every muscle aches, my joints feel like they are on fire, and it seems like I am wearing a cement night gown!

I hope someone out there decided to read my blog sometime soon because being completely honest, it does bother me a tiny bit that nobody reads this. Just a little!