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.
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!!!
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....
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!
Okay, so I had a terrible week last week. I hadn't even checked my Facebook in an entire week, that's how bad it was!
Last week started off okay, I went to work on Monday and thought everything was great. I was optimistic, but half way through the day my body started to betray me: I got the chills and then my body started to ache and I became extremely fatigued. So, I decided to skip lunch and take a quick power nap on one of the tables in my classroom. I didn't feel any better. The last two periods of the day, I literally fought off falling asleep at my desk while the kids read. By the time the bell rang at 3:15 p.m. I was running out of school WITH the students.
I went home that afternoon and passed out. The next day, I couldn't get out of bed, so I didn't go to work. Wednesday, I couldn't go to work and to tell the truth, I didn't want to. Aside from the crippling fatigue, I was experiencing terrible anxiety. Thursday-no work again. My husband told me that I was going to get fired and truthfully, I didn't care. That day, they started calling from Central Office asking for me to call Risk Management ASAP, so Friday I reluctantly went to work. That day I felt terrible too because I was sensing a migraine coming on, but I pushed through it. I did call Risk Management and the told me they were going to put me on temporary leave; this means that I have excessive absenses due to illness and it is "for my protection".
Okay, so by the end of the day I had a full on Migraine and it lasted 24 hours. The nightmare didn't end there. My whole family somehow aquired a stomach virus and we were all puking all over the place the entire weekend. Everyone was knocked out and I didn't get out of bed all weekend.
So, now it is Monday again and the sun has come out from behind the storm clouds. I am at work!!! Yay!!! I feel only slightly tired and on a scale from 1-10 my pain is at a 3. That is fantastic! I reached the light at the end of the tunnel. All I could do is pray that this reprieve lasts. Pray for me everyone.
Okay, so yesterday I didn't go to work, again, on a Monday. In case you didn't know, I teach middle school. Yes, that is enough to make any person not want to go to work, but I have been teaching for 15 years now and have never felt this way before. Sunday night I start to feel nervous, my chest feels tight, and my mind starts racing so much I get very little sleep, so I end up not going to work on Monday. I am starting to notice it has been getting progressively worse. The thought of going to work makes me sick.
At the beginning of the year, I had a particularly difficult class and I started to have all the symptoms of a heart attack and I even had my husband take me to the emergency room just to hear I was having a panic attack. You have to understand that this is just not me! I am a stable person and all of a sudden I have anxiety?!
So, the very next time I visited the rheumatologist, I spoke to her about my symptoms and I was prescribed Xanax and told to take it only when needed. The problem is I feel this way every single day I have to go to work. Now, isn't it bad enough that I have Lupus with all it's complications, Sjogren's Syndrome, Hypothyroidism, and Fibromyalgia, now I have to contend with mental health issues like anxiety?! What a bummer! This anxiety is making me depressed! (which I already take medication for by the way!)
So I am at work with my students today and once I get here it is not so bad, but getting here takes hours of talking to myself. I have to mentally drag my butt to work. It sounds strange but it is true. I lie in bed and tell myself, 'you need to get up', 'you are going to get fired,' 'think about the house,' and 'it won't be so bad just get up.'
Am I the only person with Lupus who is literally scared to go to work?!!!
