Saturday, December 29, 2012

Netflix is my new best friend

Christmas is over (yay!), and even though I have been in bed for days I have to say that on the bright side, I have fallen in love with Netflix. Yes, the hectic spirit of Christmas made me fall into a multiple day hibernation period, but as I woke from this groggy slumber, I came to realize how awesome Netflix is for people with Lupus. 

First, when I am in bed for days, instead of feeling sorry for myself I can turn it into a positive by starting and catching up on a new series. Just this past month when I was experiencing some serious pain I stayed home and discovered the show Scandal. That was a bad week for me but I actually got through season 1 and 2 and I am no anxiously awaiting the new season. Also, after the Christmas season/beat down, I have discovered a hilarious show called The League that leaves me laughing so much I forget about my pain. It's great! I am currently on season 3 of that show.

 Now let's say that you fall asleep, the show is there paused for you to pick up whenever you wake up or feel better. It has made my bad times better, I just pick up where I left off or start a new show. Now experiencing a flare has a positive twist to it: yes I feel like crap, but I will be able to watch something interesting, or funny, or scandalous. 

Over the past year and a half that I have known that I have SLE or Lupus, I have come to one realization: we are people-pleasers who refuse to focus on ourselves. So, if we have this disease that hurts us and takes from us, the least we could do is enjoy ourselves once in a while. Who says that you have to be miserable in bed? Eight bucks a month has made my time in bed so much better. You deserve it! We deserve it! 

So if you do not already have it, or if you do and do not take advantage of it, do it now. While I have been killing myself working, and raising my kids I have been missing out on some good entertainment. And boy does it beat lying in bed feeling miserable and guilty because I am in bed! I am in bed because I am sick and I am going to watch Netflix to help me feel better. If anyone has a problem with that....tough shit! Netflix is awesome!

Saturday, December 22, 2012

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!

Wednesday, December 19, 2012

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. 









Sunday, December 16, 2012

The Ultimatum

I am a teacher and have been a pretty good one for the past 15 years. This year, my health has progressively gotten worse and I am no longer able to handle the many things I have juggled easily in the past. Since August, I have taken all of my sick days for the year and it's only December. When I do go to work I find it hard to even function. I have now become the teacher I would criticize, you know, the one that teaches from her desk. Last week I had to quit being the Student Council Sponsor, helping with the yearbook, and quit the book club just to remove some of the stress that I think is making me worse.

So I am not super woman! There I finally admit it. But, for the longest time I was. I was a great teacher, mother, and wife but now I am only a shell of who I was and I had to admit that I NEED HELP. I sat in bed and looked at my husband and told him the truth. I told him I felt like a terrible mother. That I didn't remember how long I went without bathing and that I hadn't bathed the kids. That I couldn't take care of them alone anymore. That I needed his help. You see, he also teaches and after-school he coaches as well. This school year he has coached football and girls basketball and this coming week starts boys basketball. On most days he gets home around 7 or 8 pm.  Anyway, I was sobbing and he looked at me and said, "Go ahead and leave me because you will never be happy." I couldn't believe it. I didn't tell him I wanted him to give up boys basketball directly but he knew that was my request-that I was begging him to give it up so he could come home after school to help me.

 It was an ultimatum really. One that I thought I would win, but he chose basketball. My husband who swore to love me in sickness and in health chose to coach basketball instead of me. On one hand I feel selfish for even asking, but I do know that I need his help. The next morning, he woke up and told me he would do do anything I wanted after he came home from coaching-that he would do everything around the house. I couldn't believe that the man I love still does not understand this illness I struggle with on a daily basis! He really did compare his selfishness with my illness. He told me that he has had to put up with me not "wanting" to do anything with him anymore. As if I have chosen to be sick every day!

So now I am left at a loss. I put it the ultimatum out there and I got my answer. So now what? How do I deal with a husband I love who refuses to care for me? I am only getting worse and he refuses to acknowledge my illness. I knew that being diagnosed with Lupus was going to be a struggle, but I didn't think I would have to deal with it alone.

Friday, December 7, 2012

Grieving for the Old Me

My Wedding Day-2008
Lately I have been so depressed about the how my life has been decimated by Lupus. I hurt every day. I spend my life lying in bed sometimes for days straight. I feel sad for my children who no longer have a mother active enough to keep up with them and a wife who is dropping the ball in almost every aspect of a husband/wife relationship.

 It sucks mainly because I insist on being the woman I used to be 4 years ago: A woman who hiked and went waterfall climbing, a woman who biked with her children, a woman who was a great teacher, a woman who could juggle projects, lesson plans, soccer games, football practice, cooking, and cleaning. So pretty much, I'm a huge disappointment to myself because that woman is gone-dead.

Waterfall climbing
I think I better start cutting myself some slack and realize that I am a new woman; yes, weaker in body, but strong in spirit. I can't do it all anymore, but I can maybe start doing some things well. So what does this mean? Well, I need to start saying no more often: Don't sponsor any more clubs or organization, don't go to parties of obscure relatives, pretty much say no to anything that is not completely important to me and my family. Also, if getting better means gaining weight then just do it. Since taking Prednisone and a long list of other drugs, I have gained thirty pounds in the past year and it has bothered me so much that I have refused to take it for the past four months knowing it would make me feel better. That is just stupid. So, today I am going to start caring about what I can do for myself instead of others. Hey, maybe if I wasn't trying to do everything I would have time and more importantly ENERGY to maybe go walking or do a little yoga. Exercise is supposed to make a person feel better but I can never have the energy or am in too much pain.

So, after weeks of feeling sorry for myself I have decided to stop pining away for the old me and embrace the new me. On the Lupus Support Group I am a part of, someone posted a quote: live until you die, and that's what I have to do-live until I die but in the present not in the past.

Living in the present

Monday, December 3, 2012

One Day at a Time

Last night I went out with my family to pick a tree, we went to the storage unit to get the ornaments, we went out to dinner and we decorated the tree. My kids were so happy and I was happy just looking at them.

So what's the problem? Well, what you can never tell from the great Facebook photo is that it took me practically all day to get out of bed.

First, I argued with myself about getting out of bed to get the Christmas tree. I mean, I knew in my head that it was a perfect day and that we wouldn't have time all week, but I was so tired and weak. Then, I convinced myself to take a bath, which most people find easy, and afterwards I needed to rest for a few hours. Can you imagine having to rest from a bath?

All the while, my poor kids, who were ready, kept coming in to my bedroom and asking if I was ready to go. For a while, I had resigned myself into putting it off for another day. I felt so guilty knowing they wanted to do this so much. I sat in bed and argued back and forth in my mind: I'm too tired, you can do it, I'm too tired, get dressed damn it! Finally, around four in the afternoon I managed to get myself dressed and out the door.

Before Lupus, this wasn't me. I was a better mom and wife. Sometimes, I get so depressed when I think about how hard even the little things are and how different I am, but last night when my kids were busy going through our boxes putting up their ornaments I was happy. For that moment, things were okay and the fact that I was exhausted and in pain got pushed to the back of my mind.

Today, I payed the price for all the activity. I felt like I got hit by a truck and my chest hurts. I made it through work by giving the kids a quiz and staying at my desk. When the bell rang, I ran out with the students and headed home...to bed.

Well, what can I say about my life? I have to take each day as it comes and learn to appreciate the moments of happiness. What other choice do I have?

Saturday, December 1, 2012

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.


Thursday, November 29, 2012

Suprise!

If I could say one thing positive thing about Lupus it is that it is never boring and predictable. I am surprised by new symptoms every day. It never ceases to surprise me.

Last night, aside from being exhausted and achy, I started to get extreme pain in my collarbone; actually radiated from my collarbone to my shoulder joint. I took my usual pain fighter-hydrocodone-and not only did it not go away, but it only got worse. The only way I could explain this pain, is that it was similar to the pain I felt about an hour after I broke my arm: you know, a shooting, stabbing pain that radiates?

You would think that I would be used to aches and pains by now, but it actually scared me. I sat in bed and cried on my husband's shoulder: one, because it hurt of course, but two because it was so much pain it just scared me thinking that it could potentially get worse! Well, I drugged myself with pain killers and anti-anxiety medication and I finally went to bed.

On the bright side, I actually went to work (woo hoo!) and I felt pretty good. I even had enough energy to have a UIL Poetry and Prose meeting AND a student council meeting after school! Just a glimpse of the old me: a woman who could come up with innovative lessons at work, meet with the kids after-school, run home   and pick up the kids, take them all to their respective practices, get home feed them, and then after all that, bathe them and put them to bed with a good book.

Nowadays, I feed the kids in the dining room, but I eat in bed. I don't always get them to ballet or soccer, and if I don't fall asleep, I help with homework in my bed. I have to hope and pray that I will get better soon, because if I don't, I don't know how I can continue. What everyone should know about people with Lupus is that it takes an enormous amount of effort to do the smallest and easiest things: getting out of bed, taking a bath, going to the grocery store, washing, cooking, putting on my make-up, getting dressed, etc. If you know anyone with Lupus, please don't feel sorry about it, just understand it.


Tuesday, November 27, 2012

A Bad Day

I missed another day at work. Last night I couldn't sleep from the sharp pains in my stomach. I was vomiting and shaking on the floor of the bathroom at 2 in the morning. By the time I fell asleep it was time to go to work. I just couldn't work. I didn't even have the strength to leave an assignment for my students.

I feel like such a bad mother and wife and teacher. I couldn't get up and get my kids dressed for school. I have to say that every time I think I have a handle on this disease it kicks my ass to remind me it is in control. Now hydrocodone no longer keeps the pain in my hips tolerable. No matter what I take they ache and I have to sleep half the day to do anything. I am so tired I don't want to take a bath. I don't want to get out of my bed ever.

Monday, November 5, 2012

I feel like shit!

It is pretty much the only thing that clearly expresses how I feel today...and all weekend for that matter!

I call this the hypochondriac's disease only because that is the look I get from people when I talk to them about how I feel. I have everything! If you have arthritis, I have it in every joint in my body including my chest (costochondritis, the doctor called it)! I have a bladder infection, my gums are infected, I have a sinus infection, and something is wrong with my digestion! I have been throwing up my food because it feels like it just won't digest. 

So, I pretty much was in bed and the restroom all weekend. I hate that I can't be an active member of my family and it breaks my heart that I can't be the mother and wife they deserve. Friday, I couldn't and didn't get out of bed; therefore, no one went to school...again! I feel like a heavy sack of pain and misery.

On the bright side, I forced myself to go to work today and I survived through the day with only one minor blow up with a kid. I have to count my blessings in order to get through. I have 5 healthy kids, a husband who hasn't run for the hills yet, and an illness that could be a lot worse!


Wednesday, October 17, 2012

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!

Thursday, October 4, 2012

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.

Monday, October 1, 2012

I Spoke Too Soon!

AndThis weekend was pretty good for someone with Lupus. I left the house a couple of times and my symptoms were mild to moderate...so I BLOGGED or shall I say BRAGGED about it and the next thing I know, I have this 24 hour migraine and I had to miss work. I guess I jinxed it!

Now, I am at the doctor's office getting immunization shots for my 5 year old and I want to pound my head against the marble counter to stop the throbbing. Does that even make sense? And, a poor baby in the next room is screaming so loudly the poor thing but it is making the headache so much worse. And, I couldn't remember where I put my son's immunization record so they have to find all his previous records before they give him his immunizations so I'm stuck in this room waiting! The kicker is that I remember putting th record away in a "safe place" so I wouldn't lose it but my mind is mush and I can't remember! Sometimes I feel like I am getting early alzheimer's but I guess it's just the damn Lupus!

Sunday, September 30, 2012

Looks like I made it!

This week I made it through an entire week at work without taking a day off! This might not seem like a big deal to most, but people with lupus know how difficult little things are. I wanted to call in so badly, but I talked myself into going to work; literally sitting on the edge of my bed at 5:30 am talking to myself out loud: "You could do this! You could take it easy! Do what you can! You could rest all weekend!"

The bad thing is that I couldn't and didn't take my daughter to gymnastics on Friday or dance on Saturday because I was so tired. Living with Lupus is a damn game of choices and trade-offs: do I pay the bills or spend time with my kids?

Well, it's Sunday today and it's turned out to be a pretty good day. I watched a movie with my husband in bed, I got out of bed and cleaned the kitchen and living room, and I actually had a meal with the family instead of in bed. All in all, a good day.


Saturday, September 22, 2012

My bed...

I didn't go to work yesterday because I couldn't get out of bed even though I had come home from work the day before and gone straight to bed. So many hours of rest and my body hurt like I had been hit by a car. Now it's Saturday and I'm still in bed! I wanted to take my daughter to dance and no matter how much I tried to talk myself into it, I couldn't do it! I am still lying in my bed watching Grey's Anatomy.

It is depressing to lie here in my bed while my house is a mess and my kids play around me. I read to my daughter in bed. I help my son do his homework in bed. I even eat in this bed. All the while, every joint in my body aches, my chest hurts when I breathe, and I am so damn tired no matter how much I rest.  Ironically, this prison that is my bed is also the only place I feel any relief. I need rest and more rest. It hurts my heart that I can't be the mother and wife they need, but I need rest.

Sunday, September 9, 2012

I Love My Husband, But He Sucks!

This week was difficult because I ran out of all my pain meds at once! I didn't have Vicodin, or Celebrex, or Tramadol! I never knew how much I depened on those drugs; it kind of makes me feel like a druggie! Monday, the pharmacy was closed and due to miscomunication between my rheumatologist and Walgreen's I didn't get them until Friday. I didn't sleep all week! Let me just say that Tylenol and Advil do not help nor work! The pain I was feeling was sharp, stabbing, shooting pain that ran from my shoulder to my wrist. I pretty much went to work and came home and went to bed to try and sleep.

This is where my husband comes in. I was in such pain all week but I still washed clothes for him and my family, I still  ironed his dress clothes, and picked up all my kids after school. I even took my daughter to dance and gymnastics! BUT, my husband had the nerve to tell me that all I do is choose to sit in bed and ignore him! Really! Wow, after being diagnosed with Lupus over a year ago and he still knows nothing about my illness; either that or he doesn't care! Are men really that selfish?

I don't know what to do or how I fix this?! I have tried to sit withhim and explain how I feel. I have tried getting angry. I am at a loss and I am just sad.


Wednesday, September 5, 2012

Nobody is reading this blog but I don't care!

I started writing this blog shortly after I was diagnosed with Lupus and I was super gung ho about writing at the time. So, I wrote two posts and stopped. Well, a whole year has gone by and I am going to start this thing again.

Now, one thing I realized is that nobody is reading my blog and I have come to the realization that I don't care. It is somewhat healing to write my feelings down and vent even if noone reads it. What are you going to do?!

Lupus is back like a vengeance right on time with going back to work. I thought I had gotten enough rest during my summer break but no I was wrong. After only 9 days of work, I had to take a day off. Horrible...mostly since my boss the principal has already warned me about taking too many days off as if I hang around at home having pina coladas and watching soaps!

Well, I woke up at 5:30 am and realized that I couldn't move! I couldn't get out of bed. It took every ounce of strength to get out of bed to dress my kids and call in sick and then I just fell in bed and woke up at 4 p.m. Then my hubby came home from work and said, "You shouldn't have stayed home..they gave us breakfast tacos in the morning." Now, this is what truly pisses me off about anyone who doesn't have Lupus! Somehow in his head he figures that I chose to stay home to relax or something.

He just doesn't understand that I don't choose. My body does. One day I feel fine..as if I am a normal mom on the go and then the next day I wake up feeling like I was in a car accident; every muscle aches, my joints feel like they are on fire, and it seems like I am wearing a cement night gown!

I hope someone out there decided to read my blog sometime soon because being completely honest, it does bother me a tiny bit that nobody reads this. Just a little!