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.

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!