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!

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!

Can you have friends if you have Lupus?

The other day I woke up in the afternoon after a long sleepless night and saw a message from a friend asking me to go to lunch.  I messaged her and apologized for not answering and made plans to go to lunch the next day.

Well, that evening I couldn't sleep and ended up falling asleep at 7:30 am. Can you guess what happened?  I didn't wake up in time for lunch. In fact,  I woke up at 6:00 pm. I felt like such a horrible friend especially after I grabbed my phone and saw her messages. I was too much of a coward to call her so I sent her a message trying to explain.

I tried to make up for it by asking her out for dinner, but even if she had said yes I don't know if I could have gotten out of bed; my body ached so badly! She was going to go running so she couldn't go to dinner and she said she understood but I felt like such a flake.

I don't have many friends left, not only because I am married and have children but now that I have Lupus,  I have almost lost them all including family. My family is still my family but many of them, like my cousins, are no longer close to me. We have grown apart.

I have missed too many birthday parties and get togethers. I wonder if this happens to others who have Lupus, sjogrens syndrome,  or fibromyalgia or people like me who have all three. I just wonder.

Well I have a third chance to make it to a late lunch with my friend tomorrow at 2 pm so wish me luck! 

GRIPES

◇extreme fatigue

◇insomnia

◇joint stiffness/aches

◇stomach issues

GRATITUDES

◇It's summer and I don't have to work! (Teacher)

◇My children are healthy and happy!

◇My husband is being very supportive! 

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