Pain, Pain, and more Pain

I am in pain; so much pain. I googled pain and this is the image that came up that pretty much summed it all up. My head is throbbing, my shoulders and neck in spasms, my hips are inflamed, my back is shooting bolts of lightning up my spine and down my leg as well as the pinching in my butt, and last but not least, my knees aching so much I could barely stand. I know I am getting old, I am forty, but I feel like an 80 year old woman.

This week, I tried to explain to my boss how this disease- no it should be THESE diseases- affect my ability to go to work. He looked at me and TOLD me he understood but then immediately after stated it was important I attended extended day planning every Wednesday. For those of you who don't teach, this is like after school tutoring for teachers. We are herded into a classroom while they watch us do our homework. Anyway, I was sitting in his office telling him how my body was not able to tolerate being at work longer than the regular work day-that I needed to go home immediately after the end of the school day so I could rest and be able to return to work the next day, but after my whole song and dance he still asked for me to stay after work not only for extended day but for duty.

It is frustrating! These past two years I have figured out that every time I stay at work past 4 or insisted on doing something after work, I have been unable to get out of bed the next day. This school year, I have already been out 1 and a 1/2 days. One day was the day after "Meet the Teacher Night" and the 1/2 day was after my Thursday duty where I come in early and leave late. It is really so stressful for me because I pride myself in being a good teacher, but when I can't get out of bed, I can't get out of bed. 

Oh well, I think I am just going to be a bad teacher and not show up for duty and leave right after school ends because in the long run, my health and the time I spend with my students is the most important thing. To hell with the extended day planning!

Phantom Pains

I am struggling. I am struggling with my weight.  I am struggling with pain. I am struggling with getting out of bed. I am struggling pretty much alone because even the people who care FOR you get tired of caring ABOUT you.

Jeez it seems that in this day and age there would be a cure for the myriad of illnesses that are holding me hostage but no I am forced to take medicines that fix one thing and cause another but it is only an illusion because I am NEVER really better. I have pain somewhere all the damn time and I swear it is lonely.  No one around me gets it and it really makes me feel so much worse.

I read many blogs of people who struggle with lupus and fibromyalgia and Sjogrens syndrome and arthritis and scleroderma and hypothyroidism and manage to have a positive attitude and outlook but I don't know why I can't. Do other people have great doctors and friends?  I keep going to doctors and they are nice and well meaning but they don't ever have answers...just more doctors and more pills or injections. It is pretty damn hard to feel positive when something is constantly attacking my body from the inside-a phantom menace inside just destroying my hips one day then stabbing the top of my foot the next or shooting fire up my spine or down my leg. So I am struggling with all of this all by myself while my family and the few friends I have left just look at me with pity and go on with their normal lives. I seriously don't know how all of you do it.

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.

I Fell Off the Face of the Earth

I hadn't written in my blog because I lost my job. It really shouldn't have been so devastating, but when a person is a teacher it becomes a big part of his/her identity. I was invested in my school and my kids (students). I had worked at the same middle school for 13 years.

To make a long, long story short, the principal tricked me into taking a medical leave and promised me I would have my position when I returned and it was a big lie. He involved my friends and coworkers and it was ugly.My own friends had gone to show my boss posts I had made on Facebook insinuating I wasn't really sick. I felt betrayed by my so-called friends/coworkers and my administrators, because I am a great teacher even with my illness. My students were outperforming the other students in the grade level but because I had missed some days and I have lupus, they felt they needed to find another teacher to replace me. Now, I still work for the district, but when I return I have no idea what school or city I will be working in. My district encompasses three cities.

This happened the day I returned from Christmas break and I haven't returned to work since. I cried for about a month. I unfriended all my coworkers from Facebook and then refriended some. Finally, three months later, I feel I can write again.

As far as my health, this incident has only made things worse. I am pretty much bed-ridden 24/7. I would say I leave the house 1-2 times a week at best. My mom comes to my house every day and help clean up and feeds me and my little ones. I don't know what I would have done without her these past few months. My body is going into free fall. I am in pain almost every minute of the day and the pain meds are not even touching the pain. I started seeing a new doctor-I drive 6 hours because she is in Houston-and she found I am extremely anemic and am testing positive for scleroderma. Wow, on top of having hypothyroidism, lupus, sjorgren's syndrome, and fibromyalgia, my body is adding scleroderma.

I am not trying to be a downer, but that is life with lupus...at least it is for me!