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.

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!

Two Steps Forward and One Step Back

So I guess I upset some people with my last post but honestly I meant no harm. I have only had the diagnosis for as year and a half but have been dealing with symptoms and doctors for over 10 years! Shit, sometimes I just have to laugh so I don't cry! So sorry if I offended anyone!

Anyway, so I was so happy because I had made it to work for 6 straight days and then Tuesday came and kicked my ass. I couldn't get up to get my kids dressed. My poor husband was asking where their Clothes were, and I bit
head off! (I think that was the Prednisone talking) Seriously, I didn't care how he did it; I just wanted them gone so I could sleep -and sleep I did! All day into the night!

I am trying not to get down on myself about missing work but just knowing that they are docking me over $150 every day I can't teach gets me feeling like a failure. So, I try and remind myself and my family that I need to take it easy so I can make it to work.

Today, I made it to work. I had a pretty good day; I only yelled at and wrote up one 8th grader who couldn't find his seat. (Again, the Prednisone?) I Came home straight to bed and ordered my hubby to get us dinner and I don't feel guilty about it. I am doing what I have to to survive. That's all I have to say about that!

A night out makes all the difference

Last week I went to work two days out of five. Needless to say, I was quite depressed. I stayed home on Valentine's Day and ruined my husband's chance to show off b y sending me flowers at work; they were delivered at home because I was sick. That beautiful arrangement did brighten my mood and raise my spirits.

The next day, I didn't go to work AGAIN because I was so tired and achy even though I had slept all day the day before, but when my husband came home from work he got me out of bed and told me he was taking me out. OUT. I didn't even Want to get out of bed, forget about bathing and getting ready! He looked so excited so I peeled myself out of bed and got ready not knowing what to expect.

I quickly realized my wonderful husband planned a fabulous night out- even getting a sitter for the entire evening! We went to a fancy restaurant, then a movie, and when I thought the night was over, he took me to a suite filled with roses and champagne! It was something out of a movie-so romantic!

That night, I felt normal; not like the pathetic sick person. I didn't even realize how much I needed to feel like a normal women. I didn't even talk about a single ache or pain or doctor appointment. It was beyond wonderful!

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.

Depression, Anxiety, and Lupus

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?!!!

Is Christmas Over Yet?

I spent all week waiting for Friday. Friday was my last day of work (school) and now that I have reached my goal, I have now been hit with a realization: I am too tired to keep climbing this mountain called Christmas.

Today I couldn't get out of bed all day and Christmas is right around the corner and I have a my daughter's 4th birthday party tomorrow. I mustered up some energy at around 5 pm  and I made it to two stores to buy decorations and goody bag stuff but then I just fell into bed. My son was waiting for me because he wanted to go to the mall to get basketball shoes and an earring. Now, I'm not sure why I agreed to let him have an earring at 15; maybe it's the Lupus clouding my judgement or I was too tired to keep fighting him! Anyway, I had to send my husband instead because I am in bed and can't get up. 

So now what do I do? I sit in bed and think about all the things I need to do tomorrow after I "rest" and it is preventing me from resting! Aaagh! I have this list racing through my head at warp speed:

1. Make goody bags

2. What are the kids going to wear to the party?

3. I have to wash! 

4. What am I going to wear to the party?

5. I have to wash!

6. I need to buy figurines for the cake.

7. I have to finish shopping for Christmas presents.

8. I have to wrap all the presents.

9. Damn, I forgot I need to also buy cookies for the party.

10. Forget washing, stop by the store and buy kids some shirts!

11. Make bow for Cailey's birthday party.

12. What else am I forgetting?!!

I am quite overwhelmed with Christmas this year. I actually feel like lying in bed under the covers and skipping Christmas. Really! It would be wonderful to not have to go anywhere or do anything. Unfortunately that is not possible. There are parties to attend and family to see. I don't think they would understand if I stayed in bed, no, in fact I know they wouldn't. I find I have to keep reminding people that I am not sick temporarily, but chronically sick. Even my own husband sometimes asks me, "What's wrong?" Oh, it drives me crazy! What the hell does he think is wrong?! I have Lupus damn it, everything is wrong!

I love Christmas, really, but just like I was waiting for the day that school let out for Christmas break, I am waiting for Christmas to be over! Maybe I could finally actually REST.

Have a Merry Restful Christmas everyone!

Am I the Pillsbury Dough Boy?

What is is about people that makes them think it is okay to pinch your tummy fat?! I mean, I understood when people felt compelled to rub my belly when I was pregnant, but never in my life have I ever had people pinch or poke me like the Pillsbury Dough Boy until this week. Two work friends very casually and without malice put me through this and it was just humiliating and shocking. I know that this past year after taking Prednisone I have gained 30 pounds but I didn't think it was that bad; bad enough for people to be poking me. Should I have giggled?! I always want to go walking or do yoga but never ever have the damn energy for it. I think I am going to have to save this experience in my mind to give me the extra push to get out there. So I guess I am going to turn this into a positive thing-a motivator to get my fat butt out of bed so people stop poking me! :-)

Okay, so I am nearing my third week of a graduated Prednisone treatment and aside from the obvious weight gain, I am still feeling pretty crappy. My joints ache like crazy and for some reason even my trusty Hydrocodone is not working for me. On the bright side, I am starting to feel a little more energetic today.  I hope that is a sign of things to come. I am so looking forward to a break in this flare that I have been experiencing for over a year. This year my Christmas wish is simple: remission. I dream of it! I don't remember the last time I felt well-a day without pain. When you talk to someone with Lupus and they say it's a good day, what we really mean is that it is tolerable. So today I'm wishing for a day without pain for myself and for everyone else unfortunate enough to suffer from Lupus. 

Let me count the ways...

One of the things I have noticed about living with Lupus, is that on a regular day I experience a myriad of painful symptoms so much so, that I even forget to document and write about it. Not only that, I forget to talk to my doctor about these symptoms. I think what happens is that in my mind I prioritize-what hurts the most? You know?

Yesterday I was writing about this severe pain in my bones/joints and when I was done blogging I thought to myself, damn my stomach hurts so much-I need to throw up again, and I drank a half gallon of Mylanta. When I shared my blog with my favorite Lupus group on Facebook, I added a question about stomach issues. I got so many responses from other women who were experiencing the very same thing I was feeling! When I eat, it feels as if the food just sits in my stomach like a burning ball of food that refuses to digest. If I don't throw up, I can't go to sleep. It feels as if my food just doesn't digest.

Why had I just ignored that symptom? I have been throwing up and feeling pain for over two weeks and I didn't even think about it! On any given day I have stomach pain, joint pain, a sinus infection, a bladder infection, and muscle aches. Can you imagine trying to talk to someone about this?! They think I'm a hypochondriac who has "everything" everyone else has! So, we prioritize, we compartmentalize, we leave out symptoms in order to be believed and taken seriously.

I often read posts that talk about people being very supportive about their illness, but I find that most people in my life, including my own husband, have what I call "Lupus fatigue". They are tired of hearing about all the things that hurt me. I see it in their face. I don't think they even mean to do it: their eyes glaze over or they even roll their eyes and automatically tune out. My own husband is sick and tired of me being sick and tired. I have now stopped talking to most people about the way I feel-even my husband. Sometimes I just sit in bed and cry alone and he will walk in and ask me, "what's wrong?" I feel like screaming, "Damn it! I have Lupus! Everything is wrong!"

I have to thank God for all the women, and some men, on the Lupus support group on Facebook that I am a part of because they are the only people who I can list the many symptoms I have without judgement. They get it. They understand. I think depression would have swallowed me up if not for them.

Are you pregnant?

Ever since I was diagnosed with Lupus and started taking an assortment of drugs, some of which claim to cause weight gain AND weight loss, I started gaining a ton of weight. And, by a ton of weight, I mean a little over 20 lbs. Now in the vast spectrum of things to complain about, this should be the least of my worries, but today one of my students asked if I was going to have a baby! That has never, ever, ever happened to me EVER in my life and it shouldn't have, but it really depressed me! 

I mean, shoot, I have to deal with the skin rashes, mouth ulcers, thinning hair, arthritis, dry mouth, crippling fatigue, muscle aches, severe joint pain, chest pains, dry skin, digestive problems, forgetfulness, depression, and anxiety. Now you could add looking like a pregnant woman! Now all I need is for someone to rub my belly and ask when I'm due. Wow!

I Feel Like a Hypochondriac!

Yesterday was a rough day. First, the counselor at our school moved a bunch of students into my morning Creative Writing class. It totally disrupted each class and immediately changed the vibe in my room; kids who were well behaved started acting out.
Then, when my toughest 8th grade study skills class came in with their usual antics, something just started feeling wrong. The kids were walking around, cussing, the norm, and when I tried to explain the assignment as I normally did, my chest started feeling tight and I couldn't catch my breath. I just walked out without saying a word.
Luckily, my husband's classroom was right next door. I just fell apart there in the hallway crying. I felt dizzy, numb, and short of breath. I went to the principal's office and I sat there crying. It was so humiliating. I have taught for 15 years and NEVER have had problems dealing with my students.
I went to the nurse's office and rested for a while. I thought I felt better so I returned to class. I had two more classes to teach and I did without incident, but I still felt tightness in my chest, my face was numb and tingly, and I still felt like I couldn't catch my breath. Plus, my left shoulder started hurting. Of course I went straight to Google and the verdict was either panic\anxiety attack or heart attack.
I debated over it for an hour but I felt so out of sorts that I didn't want to take the chance. I asked my husband to take me to the ER. My husband hesitated because on Wednesdays we are not supposed to leave school until 4:30. I couldn't believe he was worried about that when I was scared I was having a heart attack! That's the thing about having Lupus, people look at me and think I'm perfectly fine. I assume they think I'm a hypochondriac.
Well, after I yelled at him, he took me seriously and drove me straight over like a good husband. They hooked me up quickly and started took my blood. They were nice; told me to wait for the doctor.  My husband sat by my side and held my hand.
After about an hour, the doctor came in and asked about my meds...basically, why I took so many. It was painfully obvious she knew nothing about Lupus when she asked, "So Lupus attacks what exactly..mostly the skin right? Why do you take hydroxychloriquine? It's used mostly for people with organ involvement right?" Then she was confused when I told her my main symptom of Lupus was joint pain because I didn't have rheumatoid arthritis! Then she asked, "So what do you want me to do for you? The tests show it's not your heart." Then she just looked at me like I was making it all up.
I told her that all I knew was that I knew something was wrong with me and that I guessed I would see my rheumatologist for help. With that she said okay and walked out. I felt so upset sitting there next to my husband. The tears just streamed down my cheeks. Was I really crazy? A hypochondriac? No! I was sick! Something was wrong! It wasn't a heart attack, but having all these symptoms in the middle of my day is not FINE!
I walked out of there knowing I was not crazy reminded of the 10 years and countless doctors I went to who told me that I was fine. Then, little by little I all came to light. I was diagnosed with arthritis in my early twenties, then hypothyroidism, then finally last year Lupus. Shortly after came fybromyalgia and Sjogren's.
I was almost relieved even though since then I've only gotten worse. I felt better because at least I knew I wasn't crazy. I knew that something was attacking me from the inside out. I always knew it just took time for everyone else.
I will leave you with one last quote: "It's like you WANT to have Lupus!" That's what my mom would say when I insisted I knew my symptoms matched this illness. It's hard to believe something is wrong with someone when they look perfectly normal.