Wednesday, December 29, 2010

Just A Day

Sometimes I dream a little bit about what I would do if I were normal for just one day. What I would eat, where I would go and what I would do. Compared to my current day’s worth of tasks, a normal day would be bustling with activity. Here is how a normal day goes for me right now:

Wake up at 6-7 and take medications, return to bed.
Get out of bed at 9ish
Prepare for classes at noon
Go to three classes at the High School (it’s a half day essentially)
Come home and see Lola
Run or ride
Take evening medications
Crash

Not a ton achieved in those few hours I am active. Yes, I am exhausted by the end of the day. Actually the schedule listed above is a very full day for me. Scary I know!

What I would do if I were normal on a weekday:

Wake up at six
Go to school at 7:15
Stay for all 7 classes (last class ends at 3:00)
Come home and see Lola
Go riding (or running depending on the day)
Come home, shower and eat a fabulous dinner of spaghetti
Then go to a movie
Do homework
Sleep peacefully for eight hours

Current weekend schedule:

Wake up at 6-7 take meds, go back to bed
Get up at nine
Ride Cajun
Have lunch
Nap
Collect eggs
Shower
Go to bed

A dream of a weekend day:

Sleep in until 9 a.m.
Have scrambled eggs and toast for breakfast
Ride Cajun
Collect eggs
Have PB and J for lunch
Go bike riding with my family at the beach (with the sun out)
Come home and shower
Enjoy a family game night
Sleep peacefully for eight whole hours

Oh how I would kill for a day of limitless spoons. To have freedom and to be able to run with it. Instead of barely being able to do half of the normal level of work I used to be able to do. Staying trapped in my room because I don’t even have the energy to crawl down the hallway. I just want to feel and act like my age for a day. I can dream…

Thursday, December 23, 2010

Body Image

Everyone is blessed with a body. Some choose to take care of their vessel of life while others do not. Since acquiring lupus, I am more than ever trying to keep it in some semblance of shape and keep a good mental attitude about my body. Not always an easy task. Lupus and some of the medications I am on can wreak havoc on my body.

Bikini season is one of my most dreaded times of the year. Not because I’m over weight or have an ugly tattoo. My lupus causes me to have rashes and other skin defects. No one wants to see someone at the pool who looks like they have the worst eczema in the world. To top it off, I’m generally bruised up. So… I look like I’ve been beaten as well. For a 17 year old girl, it can be quite challenging to come to terms with this is the best I can look in a bathing suit.

Every girl my age wants to be the model type. No matter how secure a girl may tell you she feels about her body, there is insecurity. American girls have been fed a steady diet of unrealistic views on beauty since a very early age. Take for example: Barbie. She has big breasts, a little waist and nice hips. The only thing Barbie and I have in common is blonde hair. No one could ever physically be Barbie but many girls try. With having lupus I have had to step back and say, “You are beautiful no matter what.” Basically I have learned for the most part to love the skin I’m in, no matter how bad the skin may be.

Weight is not a huge concern to me. I eat a healthy diet of fruits, vegetables, lean protein sources, low on salt/sugar and fat. Most of the time I am able to exercise but I know when my body needs a break. Really that’s the best I can do to maintain my weight. No crazy celery diets here! As far as prednisone goes… ahem… will not take it. Just won’t. Not happening. The side effects are far too harsh for me to willingly subject myself to. Plus I can be skinny and cranky now. And it’s easier on the joints while throwing a tantrum anyways.

I have learned to not compare other girls to me. For I am not them and they are not me. Yes they may be in far better shape than me and have letters in every single sport known to mankind. But I have lettered in things too. State champion in strength, courage and perseverance. A little patch for winning a volleyball tournament doesn’t even measure up to fighting a winning battle with lupus. So in my current state I simply smile as I watch the athletic girls parade by. Knowing I too am a winner in a very different way.

How I look is important to me. As much as lupus can change my physical appearance it has yet to change my mental opinion. I am fine just the way I am.

Tuesday, December 21, 2010

Holiday Update

The holiday season is a wonderful time of year. Even with all of the things lupus has thrown at me this holiday season, I am still enjoying the holidays. I missed decorating the tree the other day. Didn’t have the energy to make holiday cookies. Really didn’t even get out of bed for more than a couple hours yesterday. But I am still having a good holiday season. Lupus can’t take away my enjoyment of life. I won’t let it. Especially when there’s gingerbread involved.

There are different ways of coping with lupus during the holidays. Some involve just taking time off. One of my top ones is not getting stressed. Acknowledging when I have gone past my limits. Modifying normal holiday activities to fit my level of energy. Also not allowing myself to get depressed and sad about what I can no longer do in the season. Doesn’t do me any good.

My survival strategies so far:
1. Lots of sleep
2. Lots of fluids
3. Good communication
4. Knowing someone out there has it far worse than me
5. Keeping a smile on and fighting hard

Tomorrow will be an interesting day. Doctor’s appointment in the afternoon (another one, again, sigh…) to see what the Plaquenil has done to my eyes. Hopefully things will be just fine. I don’t want to have to mess around with any more medications than I already do. Fingers crossed.

I feel pretty exhausted right now. Not very holiday friendly. Hopefully a good nap and a good cup of tea will have me back in action this afternoon.

Wednesday, December 15, 2010

Flare Rant

*Disclaimer- what you are about to read is the ranting of a 17-year-old frustrated and hurting lupus patient. If you do not wish to read a rant today, exit out of the page now.

One word: Flare

I can’t even begin to tell anyone how frustrated I am. Going to the doctor’s has become a lost cause I’m afraid. All they want to do now is throw prednisone at me. Not going to take it, so there’s no use in filling the prescription. I want a different option. But there isn’t one. Sooo… its prednisone or bust. I chose bust.

Doctors do not generally like me… they can’t “fix” me. I scare them. Instead of getting better, I get worse. No doctor wants a patient who doesn’t get better. Plus, I’m YOUNG. So on top of having a challenging disease, I’m also young and well… it hurts for a doctor to see someone like me suffering. They can’t do squat about it, so they try to keep me at bay.

So they call this “managing” lupus. Uhmmmm… this is not management. This is like something from Frankenstein’s lab. Let’s see what happens if we do this or just keep on watching and maybe this will happen. IF THIS IS AS MANAGED AS IT GETS, THEN I WOULD REALLY HATE TO SEE UNMANAGED. ‘Cause I am not sleeping well (maybe 3 hours a night), joints swollen, achy, pain, skipping periods, shedding hair, rashes, bruises, mouth sores, sun sensitivity, fatigue and brain fog up the wazzu! Yes, this does sound sooooo managed doesn’t it?

I am falling behind in some of my classes because of my lupus. I can’t think, I can’t function and I am exhausted. This is intruding upon my daily life to a great degree. Right now I come home from school and collapse most of the time. This is no way to live life. I don’t want to live the rest of my life like this. No one should have to live life like this.

My quality of life seems to drop every single time I have a flare. Like every single time I have a strong spike in activity, I loose something even when I come out of the flare. The only thing I find from it is more challenges in dealing with life with lupus. I DON’T NEED ANYMORE LUPUS CHALLENGES OR COMPLICATIONS.

Mornings have been DREADFUL for me. I have been literally CRAWLING down the hall to the kitchen to have breakfast.

I actually cried while running this past Sunday it hurt so badly. Running is my outlet; I don’t want it to be taken away. Somehow I will find a way to continue to run. My stubbornness is not to be messed with! But I would much prefer to run pain free.

This is not fair. Why me? I don’t want to and shouldn’t have to put up with this for the rest of my life!

Monday, December 13, 2010

Jealousy

Do you ever get jealous of other people's illnesses? The ones which can be easily controlled, have lots of awareness, proper understanding or can be cured even? I know I get jealous all the time of such illnesses. Sometimes I wish I had one of these illnesses because life might be easier for me (maybe I would actually have a "normal" life...). Dealing with any illness is a challenge though, and I am NOT here to compare illnesses or bash on any illnesses. Each and every illness is unique and complicated. Every illness deserves respect.

I am so tired of saying "I have lupus" and everyone just looking at me like "this girl is on crack, what the helk, lupus????" Yesterday I was talking to my mom in the car about how if I were to do a survey about lupus not many people would know what it is. But if I were to do one say about breast cancer, almost everyone would know. Mostly because breast cancer has more awareness not because it's more common. Both lupus and breast cancer take lives of women and men. For those who didn't know, heart disease is actually the number one killer of women... not breast cancer. Breast cancer is still serious business though.

Certain T.V. shows can and do send out wrong messages about lupus. Recently I read about how a T.V. show had an actor portraying to have lupus... wonderful right? Not quite, most of the information about lupus given during the show was wrong. Stuff like lupus changes your blood type and other crazy ramblings. And of course, "Yes House, it is lupus." If people are going to act like they have lupus on T.V., they might as well do it right.

Doesn't it seem like there's a break through every week for almost all illnesses except for lupus? I read about break throughs for cancer, diabetes, and autism all the time. Sometimes I really do wish I could have an illness where something new and cutting edge comes out all the time. Or tons of research is being done every single day. Dream on me... dream on... True there is research out there for lupus but not too much. So I am thankful for what little there is.

Sometimes when I see awareness add after awareness add for diabetes or cancer I just want to cry. Information is being spewed out every single day for them. Never before in my life have I seen an awareness add for lupus. Not even one thirty second blip of an add on T.V. If I did happen to see one, I think I would pass out from shock.

If I were to choose a replacement illness for my lupus, I would pick the common cold. There's even awareness posters for it in port-o-potties! Plus, it's a couple week venture and not my whole life. So for a few weeks I could rest and then be 100%again. If only in my dreams...

Thursday, December 9, 2010

STRESS

‘Tis the season to be STRESSED. My mom has turned into Momzilla or the “Momster” as I fondly refer to her. Snapping at everything I say and completely freaking out at even the slightest thing gone wrong. Stress does funny things to the mind. I am trying my best not to let stress creep into my life. If I do… I’m in for some SERIOUS trouble. I’ll begin with the basics.

Stress + Lupus = FLARE. Do I look like I need a major flare right now????? No! I do not. I’m already down a lupus path I do not enjoy (not remission…). I don’t need to add the word “major” to it.

I turn into a total crazy person. Yeah… I’m already crazy I’ll admit it but not CRAZY. Randomly going bonkers in school and throwing fits to compete with the best of them. Nope, no one should have to witness such a thing.

Mr. Raynaud does not do stress. Spontaneously turning blue/white/red is not my cup of tea. If I get too stressed I tend to have attack after attack. Which really really sucks.

My fatigue level goes THROUGH THE FREAKING ROOF. I feel VERY FATIGUED (I wake up every morning right now and say “oh god what hit me??? Can’t the bus go on the road and swerve to avoid me???) now. But when stressed… I just get to the point of being so tired I can’t function even when I just get out of bed. BTW- tired is not a word in my vocabulary. Tired means when one rests, the feeling of tiredness goes away. Fatigue is when no matter how much one sleeps or rests they still feel exhausted. Being tired vs. being fatigued are two totally different ball games.

Fog so thick it’s like I’m thinking through a blackout shade. Need I say more?

Holidays are rough on lupies. I know first hand. Next week is going to be a week where I will either sink or swim. If I let stress come and nip at my heels, I will have problems. But if I step back and go “it will all be good (deep breathe)” I’ll do okay.

Sunday, December 5, 2010

Dear Santa

Every year there is a tradition in my household to write a letter to Santa. I well realize Santa does not shimmy down the chimney every year (he prefers using the side door) but creating a letter reminds me of my youth. Some of the crazy letters I have constructed over the years have asked for things like pianos and puppies. Last year I asked Santa for a name besides “I don’t know.” This year, my letter will go something like this:

Dear Santa,

What a long year! Been eleven whole months since I heard from you last. Are you still fat? My vegan cooking seems to be slimming down everyone around here. Dad sure likes the quinoa salad I make. Of course the cookies too! This is a little besides the point I guess, you know the real reason why I am writing to you.

So I have been fairly good this year. Some Mom drama going on but I’m pretty sure every 17 year old has some Mom drama in their life. Correct me if I am wrong though. Danielle has been good this year too. She could use a math inclined elf in her stocking though because statistics just isn’t her cup of tea…

All I want for Christmas this year is a cure. Yes, you read right: a cure. Not some new fangled drug, which has five billion side effects or a short-lived remission. A cure please, not only for me, but also for everyone out there who has lupus. The greatest gift of all for me would to have good health again. To be able to live freely once more. Nothing will replace this request. I don’t want a gift card to Sears or a new bike.

Do not feel bad if you cannot fulfill this request. I know it’s a lot to ask from one jolly red man and his colony of elves. I might even be sounding a little too demanding here. I’m sorry if I am. I just really don’t want anything besides having a life again.

Please say “hi” to Mrs. Claus for me. I know she is busy right now trying to get hot cocoa stains out of your trousers (tsk, tsk…). Also say “hi” to the elves and tell them I really like the running socks last year.

Peace, hope, and love,

Katyann