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!

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. 

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.

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

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?

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.