Finding a Job

I have worked as a teacher for 17 years; 15 of those at the same middle school. When I first got diagnosed I realized that I needed to make changes so I asked my principal to be moved to a less stressful position. Now, if you don't know how most schools work, subjects that are tested are the most stressful and difficult mostly because a teachers success or failure impacts the rest of the school. So, the principals micromanage every move we make while other non-testing subjects are left alone to just teach.

 Anyway, the principal decided to move me into an elective called "Study Skills" where they took the lowest performing kids in 6th, 7th and 8th grade in my class so I could tutor them. Instead of teaching 5 classes a day they gave me 6; well, actually 12 in a two day cycle. I had 4 6th grade classes, 4th grade classes, and 28th grade classes of student who didn't "elect" to be in my class and were pretty much the worst behaved students in the school. Oh, and they took away a planning period.

Well, you could only guess that this year really brought the lupus out with a vengeance. I went to my principal again with information on lupus and begged to be moved to another position and he moved me to 7th grade ELA where the students have to take and pass a reading, writing, and grammar test. I have always been able to handle everything and anything but I started calling in sick way more often than they liked. By Christmas break, I knew I had to do something and when my coworkers started insinuating that I was faking, I decided to take the administration's suggestion to take a sick leave. I was out from January to the end of April.

 Then whole time I was thinking that I needed to return but they replaced me on week after I took my leave so the district placed me in an elementary school for the month of May. I was placed in a Read 180 position which was absolutely perfect for me. I was so excited because I was in a job I could handle. I was working with 4-6 students at a time for about 45 minutes. It was perfect because of my limitations but also because of my qualifications. I have 27 graduate hours in Reading so I felt God was opening another window for me. I was shocked when the principal of the school told me she had no job for me because she already had someone in mind for my job. That was it...the district then sent me back to 7th grade ELA again.

The next school year, which was 2014-2015, I only made it to October of course. My lupus was out of control. By this time, I had gotten diagnosed with fibromyalgia and Sjogren's Syndrome as well.
I went straight to Central Office and begged them for a compatible job even accepting a job as a teacher assistant but they never called me back. Then one day in April I received a letter stating I was fired and had lost my insurance....oh, and they sent my 15 year award with my husband.

Since then, I have been so depressed. I can barely get out of bed because of the pain but I know that the depression makes things so much worse. Here I am, 41 years old, and I feel thrown away. My family is struggling to keep up with our bill since I am on disability insurance and they pay me so much less. My insurance is about to run out so I am desperately applying for jobs in the closest three cities. I am applying for jobs as a teacher aide or a computer lab assistant. I applied for a job as a part-time tutor, but I have only been called back for one interview and they have filled the jobs I am overqualified for without even allowing me to interview!

What is going on here?! I feel that these districts are not calling me because they know I have a disabling disease through my past employer. Could this be the end of my career? I don't know what to do but keep applying, sending out emails, and calling the schools personally but it stinks that they hired one of my former students as a teacher with 0 years experience and I wasn't even interviewed.

If anyone thinks that people living with lupus or fibromyalgia ask for disability to get money out of the government, I hope this changes your point of view. I have to live with pain every day of  my life and now I have no way to make a living. I feel like an empty shell of my former vibrant, energetic and successful self.

The migraine is back!

Lupus and fibromyalgia cause migraines. I am beginning to feel one starting and I already know it will wake me up at 2 am. I just hope this one doesn't send me to the ER and that it doesn't last too many days. I think I need to start seeing a pain management specialist ASAP or maybe even a neurologist. The ladt thing I need is more doctors. I can barely get out of bed to go to the appointments I have now.

I need to rest after a nap!

Enough said.

It's Okay to Say 'No'!

I haven't written in forever. Let's catch up. I have been spending about 20 hours a day in bed with a good four hours to get up to go to the bathroom, eat, dress my kids, take my medicines, greet my kids, help with homework, and have some kind of conversation with my husband. Unfortunately, I don't do all those things every day.

It has become normal to skip eating because I am too tired to even get up in bed to eat it. I sometimes throw back some crackers only to take my meds. At one point I was addicted to eating Ritz crackers. 

The bad thing about living this way is that my family, kids, and husband expect for me to get better-to have better days, but I don't. On the better days I accomplish two or three things on my to-do list. On my very bad days, I hurt everywhere and can't even breathe. Shit, taking a shower is my exercise!

So, I decided to attend my first lupus support group to gauge others' normalcy and the three other women who showed up felt as bad or worse than me. Some of these women still make it to work sometimes. I haven't been in the classroom since September of 2014. 

After this, I felt happy. To hear those women and their husbands talk about things I face on a daily basis just about made my giddy. By coincidence we were all under the care of the same physician and had similar complaints. Years are going by and we are not getting better. One woman pretty much demanded Benlysta. 

Now, I consider myself a good communicator-someone who knows how express oneself without fear of being blunt and honest. So, why have I sat in countless doctor appointments and complained about my symptoms and went with the doctors' treatments with little to no questioning?! Today, I went in and tried to get the doctor to understand I have pretty much taken the same medications that were not working; in fact, I have only gotten worse since the date I was diagnosed with lupus! I asked about Benlysta and was told I had to have a positive ANA to qualify. I am not certain this course of treatment is the answer but I am willing to try anything DIFFERENT at this point! Well, I have had countless positive ANA's but they lost the last one and since I only get to see the rheumatologist 3 or 4 times a year, they had to run new labs today.

Okay, on the way out I get my next appointment date. June of 2015. So, I guess I have to wait until then to hear my results. Nope, not this time! Next week, I am going to be their worst nightmare.



P.S. A month ago, I was in the office to get my monthly prescription for Hydrocodone due to new regulations and a patient was losing her mind in the waiting room and moved in to the nurse's station and was screaming in anger and most importantly, in pain. She wanted to get her prescription, like me, and leave but that wasn't part of the process even if she had just been released from the ER. I felt sorry for her at the time, but I think from now on, I am not going to swallow my pain to be polite. 

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.