Exceeding Expectations

Today I dropped off my son at school, I went to my daughter's school to order a shirt, I went to therapy,  I dropped off something for my husband at work, I picked up a form from my oldest son's school and I dropped off a prescription.

I was feeling pretty proud of all I accomplished until I spoke to my mother. She started asking me if I had done A, B or C. I was so angry at her! I yelled at her, "Mom, I could barely get out of bed most days...I do what I can!" "But the kids need your attention...."

I just hung up on her. Holy hell people can be so damn insensitive! What sucks is that she is the MOST supportive person in my family...including my own husband.

http://lupus-exposed.tumblr.com/post/127733181669/today-i-dropped-off-my-son-at-school-i-went-to-my

No job yet

I have applied to so many teaching jobs and even instructional aid jobs but I have only gotten two calls. Two calls...two interviews...but NO JOB. I have been teaching for 17 years-15 of which I spent at the same campus, but after taking a few months off on sick leave, I can no longer get a job even as an assistant.

Boy do I feel inept and useless. It is as if all my qualifications and experience were erased by lupus, fibromyalgia,  sjogren's syndrome, or hypothyroidism. I was so excited to start at another school where no one knew I was sick- where no one looked at me like spoiled goods.

Oh well, if it is one thing chronic illness has taught me is to look on the bright side; I will work as a substitute teacher and God willing someone will see my worth and hire me.

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.

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!

Methotrexate and it's Scary Side Effects

Okay so I had a rheumy appointment today; it was a make up day because I missed my last appointment because I was too busy cleaning my classroom. Anyway they made it very clear I would only see the PA because the doctor was booked until August so I was really only expecting refills.

Now, I am fairly new to Lupus and I have often left my appointments with more questions than answers. So, I was ready to talk to the doctor about the last shots he gave me: I felt so much better almost immediately after!  Here is the really stupid thing about this: I have no idea what he injected in my body!  All I knew is that I was in pain and wanted relief and I blindly asked 0 questions! 
This time, I asked him right away because I wanted him to know it qas helpful for about 3 weeks and then I was back to normal. Guess what it was...

Methotrexate and some pain killer I already forgot the name of! Damn this Lupus fog!!!!

Okay, so we talked about the health care crisis and the decline of education in the US (He loves to talk) and then he checked me and walked out of thw room. So I am sitting there waiting for my prescriptions and a guy comes in and informs me I am getting 5 shotsif I am willing to pay $57 out of pocket.  Okay! So when he comes back, I ask the tech what I am getting (This time I am asking damn it!) and he says four shots of methotrexate (2 on my hot spots on mu upper back and 2 on my lower back) and a pain killer on my arm.

Wow! That was three more injections than last time and I know absolutely nothing about this medication.  By the second injection, I was about to pass out. I started to feel hot, light-headed, and nauseous! I had to sit and take a break because I was afraid I would pass out!

So when I got home I looked it up and WebMD had some extremely harsh precautions.  Johns Hopkins Medical Center was a little less scary. So I hope all goes well because lately my life is spent in bed. I love my kids and am grateful for my life but pray to God every day my life changes. Let's hope and pray this works for me!

So far I have felt a little nauseated but that's hopefully it...we'll see! Please add any insight or experiences!!!

Summer is here!

Okay so I have had been feeling pretty good for about two weeks that I was taking higher doses of prednisone. I even went camping at Garner State Park in Texas for 4 days. I was out tubing on the river with my kids every day and I even had enough energy to cook for them twice a day. It was so much fun and I felt like a "normal" mom.  I expected it to kick my ass since I was out in the sun so much but nothing. I felt as great as a person with Lupus could feel!

Then the day before yesterday,  I went bowling with all the kids for my mom's birthday. Believe me that it is not normal for me to have the energy for so many activities.  Anyway,  the next day I woke up with so much joint and muscle pain I could barely move! I also got sciatica!  Now Lupus kicked my ass! The pain is not going away; not with Vicodine or Tramadol! I didn't even think I was exerting myself.

It sure was nice while it lasted! I have to say that at least I don't have to go to work! It's summer: the teacher rehab!

Prednisone: My Frenemy Part II

As I have said before, I am a teacher and I am two day from being free!!! Yes...I am 48 hours (give or take) from being able to sleep in and have to deal with my own kids for a change! I had been feeling so terrible lately with extreme fatigue, but I started Prednisone again last week and it gave me the necessary boost to make it through 8th grade Prom decorating, Powder Puff flag football, my daughters dance recital, 6th, 7th, and 8th grade students at the end of the school year, and everything else the last week of school brings for teachers. I have made it through 7 straight days of work without calling in. In fact, I haven't had to call in since starting the Prednisone.


Now, on one hand this "miracle drug" has allowed me to go about my life almost like a normal working mom these past two weeks, but on the other hand, I am at the highest weight ever in my life. I hate to dwell on this topic because it shouldn't really matter right? It does matter though. I just looked at my picture in the school yearbook and it is just depressing. I looked round and puffy and pretty much exhausted. It is B A D! Depression is something I struggle with so often and this weight gain and the physical changes I have gone through in the past two years do not make things easy. I had a picture of myself and my husband from two years ago on my filing cabinet and one student stood there shocked and said, "Wow...you looked so...so....," and couldn't quite finish that statement out of fear of hurting my feelings but I knew what she was thinking. I looked pretty and thin and now I don't.

Well, I guess that is life. A struggle to weigh the good with the bad. In order for me to get out of the house and work and take my kids to recitals, I have to deal with a lower self-esteem and bigger clothes. But, I do still wish I didn't have to make these choices. I wish I wasn't sick with this horrible illness. I hope that everyone out there realizes how lucky they are that they don't have to make these choices and appreciate their healthy lives.

This is Lupus!

I have started following a few blogs of really remarkable women with Lupus that deal with it with a wonderful positive attitude and they look great. So I think what the hell is wrong with me!?

I can't go a day without complaining about something hurting or bitching about something!

Today, I didn't go to work because I became overwhelmed in the morning when I couldn't find shoes for my daughter and Clothes for my boys to go to school. The anxiety mixed in with the fatigue just took over and I had to call in sick. Another missed day-another pitiful check next month! So, l went back to bed and no one went to school except my husband. He actually threw it in my face that he was paying most of the bills now that I was "Choosing" to stay home so often now. Of course, he didn't get the Kids dressed and take them to school because that is my job! And, he wonders why I am overwhelmed and sick and tired and anxious!

So here I am in bed again in an inside out school shirt that belongs to my husband because none of my Clothes fit Comfortably anymore while my kids make more of a mess in the house! Am I the only Lupus patient that doesn't have it all together and Can't Keep the house clean and the laundry washed and not in 2 giant piles (clean/dirty) and can't keep her husband "Satisfied"?

Phew! I am a hot mess as they say! l want to be positive but the only thing I could do is laugh at myself so I don't cry because now on top of it all, I have breakthrough joint pain even though I already took Vicodin and Celebrex and Tramadol.

This is me with Lupus moon face and all!