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.

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.

There's Nothing to Be Stressed About!?

So ladies and gentleman, Lupus is getting me in a new and fabulous way! The mild anxiety I was living with has grown into full blown anxiety attacks that refuse to go away. Anxiety like I had never experienced and without meds to boot! 

I seriously didn't know what to do! I had run out of Xanax, but wasn't really worried because I didn't really use too often. All of a sudden, last Wednesday evening I started to feel my chest shake. At first just a little but slowly it became very intense. Then, the pressure in my chest increase: it was like someone was sitting on my chest and I could barely breathe. I spent the night trying to sleep with my mind racing and my legs cramping.

So, the next day I didn't go to work in hopes of getting my Xanax refilled by my doctor. I called and they said they would call it in. Meanwhile, I spent the entire day crying and shaking like a drug addict needing her next fix. Then, when my husband goes to pick up my prescription they inform him I can't have it until November 1 because I had used too many of my pills too soon. 

I cried uncontrollably for about an hour and the shaking got even worse. This feeling is absolutely horrible and maddening! I know this isn't right and legal but I was losing my mind; I called a friend who also took Xanax and borrowed a few to tide me over. Oh my goodness, it was almost instant relief! I relaxed and finally slept!

The next day, I of course head straight to my computer to figure out what the hell is wrong with me. It couldn't have been just anxiety....but I think it was. I called my rheumatologist to find out why the hell they couldn't refill my prescription and they tell my they are referring me to another doctor who "works with controlled substances such as Xanax." The problem with that is that I am having these episodes at least twice a day from now on and I am running out of the meds my friend gave me. So what do I do? Go to the emergency room? I swear if I hadn't gotten that medicine, I would have gone because I couldn't tolerate that feeling one more moment! 

I remember when I was in bed crying after my husband came back from the pharmacy. He held me and tried to understand what was wrong with his wife. "Honey, what are you stressed about? There's nothing to be stressed about..." I couldn't explain to him that I had no idea what started this episode or the fact that I am stressed almost every day and this hadn't happened before. 

This is just Lupus attacking me in a different way. Nobody understands that one day I wake up with a migraine at 2 am, and the next day I can't move my hips. One day I have sciatica, the next day I wake up just fine-and by fine I mean still in pain but tolerable enough to take a shower and go to work. Now it's anxiety like nothing I've ever experienced. I am trying to stay positive here people, but this damn disease is making it very very difficult!!!

Feeling all sorts of things

Okay so right now at this moment I am a little depressed. No, actually very depressed. It seems that every day I develop all sorts of new symptoms that I have to deal with on my own. I am not only a mother and caretaker for 5 children, but I am my own caretaker. I sound like such a whiny little girl, but I have to admit I am so tired of taking care of others when I could barely take care of myself. No one asks me how I feel, and if they do, they don't listen to the response; they just ask to be nice.

 My husband doesn't ever ask. It is as if nothing is wrong with me. He even got annoyed with me because I sent him to the pharmacy to get my prescriptions and it was over $100 as if I haven't been taking a bag full of pills every day for two years now! Really?! I am alone in this endeavor and it is truly depressing. The symptom of this week was seeing colored flashing lights out of my left eye. This happened the day before a major migraine so through simple deduction and a Google search, I came to the conclusion that I was experiencing what they call auras. Anyway, I will have to ask my doctor of course, but no one in my life cares to hear about this so I am completely and utterly alone but surrounded with people who claim to love me. 

On the lighter side, if that is possible, I started something new to fight against some of the brown spots that have appeared on my face these past two years. I am trying Clinique's Dark Spot Corrector and the Moisturizer hoping to look closer to my old normal self. I will keep you informed just in case you have the same problem. This are the before pics....

Back to Work....Back to Incompetence.

School has begun and I started this school year on a positive note. I was given a better job placement-7th grade ELA and my students this year have been great so far. So, what could go wrong right?

Well, getting through the work week has gotten to be almost impossible  for me. This week I was out on Tuesday, Thursday, and Today. I am completely exhausted and unable to get the necessary rest. At night, my mind races with ideas, lists, problems, lesson plans, decorating ideas, etc. I fall asleep and my mind continues to race even while sleeping. When I wake up, I am exhausted and lying in sweat soaked sheets and I struggle with the decision of calling in sick or going to work. I argue with myself; telling myself that I need to go to work and then convincing myself that I need to rest. All the while, feeling completely overwhelmed by even the simplest of tasks: getting my kids dressed for school. This morning, I called my mom and told her to keep my 4 year old daughter at home instead of taking her to school, because I couldn't bring myself to get her dressed! What a bad mother Lupus has made me!

So, what could be causing this? I know that I haven't been taking Xanax before sleeping because I ran out and hadn't called the doctor for a refill. I called it in this afternoon, but I am certain that it is just the fact that I am working that is making me so sick. Right now, I feel somewhat good, but I slept all night and all day until 1:00 pm. It is insane that I need this much rest in order to have a few hours of normal. God help me!

Lupus is back....damn it!

Okay so before I start bitching, let me start with the positives. (For the sake of positivity)

Gratitudes
◇ I woke up before noon
◇ I left the house today
◇ I walked 2 miles last night
◇ I made a boutique style bow for my daughter

So now that I listed the good, it might be easy to see what might be included in the bad. Last night, I went for a walk with my husband and jumped from walking one mile to two. I felt so proud of myself, but it is at these moments that Lupus reminds me that I am not normal. It literally kicks my ass as if to say, "hello, did you forget you are a sick person? Don't make me remind you again!" My body feels as if someone punched me all over.

I seriously want to, and have to, lose weight. I wanted to start walking every day in order to lose the 30 pounds I gained this year, but it is so difficult when your own body attacks you. So what have I learned? Take it slow and easy STUPID. I am determined to stop blowing up like a whale so no matter how many pills I have to pop tomorrow,  I am going to walk at least a mile. I am going to walk a mile every other day and then move on to a mile a day. I am going to take it slow but I am going to keep moving. This disease has robbed me of so many things, but I am going to fight it every step of the way!

Gripes
◇ fever
◇ joint aches
◇ muscle pain
◇ stomach pain
◇ fatigue

Summer is flying by!

Summer is flying by.  In case you haven't read any of my other posts, I am a teacher and am on a two month vacation from work! It is really flying by way too fast!

I have managed to go on two trips. One with my family to the river and a couple trip to New Orleans.  I am pretty satisfied with myself-that I was able to endure the activity and survive the weeks after.

Of course,  getting to sleep in every day and not having to go to work sure makes things so much better!  I have been working since I was sixteen years old, but it would make the quality of my life so much better if I didn't have to work anymore.  It is so hard to be a teacher and a mother with Lupus.

One thing that has been helping me other than tons of rest is gratitude. Being able to just look at the little things in my life that bring me joy and being grateful for the things I can accomplish have made me so much happier.   So here is a list of my "gratitudes":

Gratitudes
☆I walked one mile today
☆I made dinner instead of take-out
☆I wrote a blog entry

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.

Adults Don't Make Messes

 This week I was able to accomplish more things than I have in a long time! I planned for the 8th grade Prom and pulled it together, I played in the Powder Puff football game, I shopped for an outfit for my son for Prom, I took my daughter to her Saturday recital rehearsal, took my daughter to her recital on time, and helped my niece and another dancer get dressed backstage! I almost felt like the mom I used to be.

Of course, I couldn't make it to the actual Prom to chaperone because I was beat from the day and didn't take my daughter to her weekday rehearsals because I was tired from work. Every day, I go home and go straight to bed and rest. Then I eat dinner, in bed, and stay there until I have to go to work the next day. I had been feeling so depressed lately because I felt I was depriving my kids of a "normal mom". I mean, my mother has to come to my house every day to clean for me and my sister helps me out by taking my daughter to dance during the week, but my 4 year old daughter made me feel so much better.

She and my husband were both sitting with me in bed. My daughter was telling my husband how much she wanted to grow up and be an adult. Of course my husband told her he wanted her to stay his baby forever, and in order to convince him it would be a good idea, she said, "Adults don't make messes so then it would be good because I wouldn't make a mess anymore Daddy." I asked her why she thought adults don't make messes and she responded, "Adults come home and go straight to bed, take their medicines, watch TV and stay in bed so the never make messes."

I knew she was talking about me and immediately felt sad for my poor baby who thought all adults do what I do so I said to her, "You are talking about Mommy not all adults," and she responded, "That's okay Mommy, I love you! You are the best mommy in the world!" Somehow, she knew that I was sad and she said exactly what I needed to hear. She knows at four years old that I am sick and doing the best to be her Mom that I can. AND, she loves me and appreciates me all the same.

So, even though I am not the perfect mom, I am their perfect mom. I need help from others, but it doesn't make me less of a mom, or less of a woman. I know a lot of women with Lupus out there want to be the women they once were before Lupus, but it is not possible. What we have to do is stop trying to be what we were, and strive to be the best Mom with Lupus that we can be.

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!