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!

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.

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!

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.

One Terrible Week Behind 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.