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.

Wow I'm fat?!

This is the A-Ha picture-My face looks like a pancake!

Okay so I haven't blogged because of course I felt like shit yada yada yada.  But I came to a startling realization today: I'm fat.

Don't even laugh!  Have you ever noticed you were gaining weight but then all of a sudden you look at a picture of yourself and say;  "oh my God I'm fat!?" That is what happened to me.  I know what you are thinking...don't you look in the mirror?  Yes but I didn't see myself SO big.

So yeah I'm a little depressed.  In my whole life I have gone up and down in weight and it wasn't that big of a deal.  I have never dieted or gone to the gym. I walk and do yoga, but even at my heaviest (during 5 of my pregnancies) I never surpased 160. I have now reached 180. Oh and I am not pregnant.

This is me in 2008-when I looked normal :-(

Symptoms Today

• Crazy itchy face, neck and arms
• EXTREME FATIGUE
• nausea
• Slight joint pain

I'm grateful:

• I took my daughter to her first ballet photo shoot
• I made it through four days of work

Overlapping Flares

Symptoms Today:

1. fatigue (of course!)
2. Sinus Pain/Pressure
3. Stiff/Achy Joints
4. Dry Itchy Skin
5. Weight Gain (Is that a symptom? I feel my pants get tighter every day!)

Today is actually not so bad. This past weekend, I had a migraine that started Friday night and ended Monday night. How many hours is that? 72 hours?! I had to miss work on Monday but I am thankful that it went away by Tuesday because my students are STAAR testing this week. (Texas state assessments) Believe me it's a big deal and I had already been getting crap about "possibly missing work" on these days as if I pick and choose when I get sick.

So I have been stuck all day in the class watching students take a standardized test and I am not allowed to even read while they test. (4 hours long!!!!) So, naturally I was falling asleep. Even while  I walked around the room my head would start to plop down. Thank God I had snacks.

Well, as I was walking around trying to keep my eyes open I started to think of my flares and they remind me of something terrible I experienced 5 times: childbirth and contractions. I remember they hooked you up to a machine and you could see the contractions on the screen. It would start to rise kind of forming a steep mountain peek then fall as the pain subsided, but the problem I started noticing with my contractions was that one was not even over before another one began! That is how I feel with these flares. Last week right before my migraine episode, my mouth became full of mouth sores/ulcers. Then came the migraine, fatigue, etc, etc... But, I never felt any relief or rest from the flare before. Is this happening to anyone else?

Things I am grateful for today:

• I got out of bed this morning
• I dressed my son and put him on the bus
• I made it to morning duty semi-on time
• One student actually read a book and asked to borrow it  (Yay! You can't imagine how happy it makes me)
• Of course, my husband and kids
• My mom because she wakes up early to drive to my house to take care of my daughter while we work

As a matter of fact...

Alright I am going to get it out of the way and list all the things that are wrong today:

• sore throat (strep again?)
• fever blisters (ouch!)
• cough
• congestion

Okay, so I sometimes feel bad for being such a negative Nelly and complaining all the time in this blog, but I really can't complain to my loved ones, friends, or co-workers. So, this is my outlet and it is a fact that every damn day SOMETHING hurts! I think it is important to let everyone know what a struggle it is to constantly live with pain. IT IS ALWAYS THERE!

Maybe that is why there isn't a cure yet....as women (of course men get Lupus too) we tend to ignore our own shit to take care of everyone else, and we also downplay our symptoms. Studies show that Lupus patients downplay their symptoms even to their own doctors. It is true though. When I go to the doctor, I kind of give him the top three things that are bothering me because there are so many things I can complain about,

If you are out there suffering, let people know; let your doctor know EVERYTHING. There is no shame in stating what is a matter of fact.

And, in the attempt to be more positive, I am going to list the positive things in my life that bring me happiness. Remember Oprah and the Gratitude Journal? These are the things I am grateful for today:

• I still have a job
• I got up this moring
• I brushed my teeth, combed my hair, AND put on make-up
• My mom who helps me so much
• less Lupus Fog today
• My husband puts up with me (and I can put up with him even with the Prednisone)
• My kids are healthy (evidenced by the constant racket and mess that they make)

My cup runneth over!

Okay so you are never going to believe my weekend. Friday I barely made it to work right as the tardy bell rang. (I teach middle school) So I was hurrying down the hall trying to get to my class before the principal saw me when I get distracted by a large group of 8th graders congregating infant of the office; they definitely seemed up to no good and I noticed one particular student walking towards me. (who I might add hates me because I am always on his case) As I moved around him to avoid any trouble, I felt a foot hit my ankle and before I Knew it I was falling. I didn't even have a Chance to brace for the fall; I fell flat on my face And in that instant I fainted. I have been extremely weak lately because I an aneomic and I am flaring. So to make a long story short, I was taken to the hospital in an ambulance and I spent the entire day in the emergency room with a neck brace waiting for the doctor to release me. To make things worse at the end of the day the drugs he prescribed were nowhere as good as the ones I already have! That goes to show how little these doctors understand about Lupus.

Flash forward to Sunday -tonight- I have a Cold! Wah-Wah Wah-.- AND I can't go back to works until
Tuesday And although I held the rest I can't afford it! This illness is killing me financially!

So my life sucks? No! Although this illness has made me feel so lonely because no one really understands how I feel, people really surprised me. when I got out of the hospital and checked my phone there were a lot of text messages from students and coworkers asking if I was okay and wishing me well. Even my teenage son, who makes a point of torturing me, apologized for stressing me out! So in the end, even though I am in bed coughing and sniffling, I am grateful I am alive and surrounded by family and great friends. My cup runneth over!

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!