Things Ive noticed

I have been taking naproxen 500 mg twice daily since march. After my
visit with my ra doctor he switched me to vimivo 500 mg twice daily.
These medications contain a lot of asprin in them. As we all know
asprin thins your blood.

So I've noticed that on top of my normal bruising from my anemia..im
getting bruises even easier. The picture I attached is a bruise I
received from my one year old son resting his head on my arm.

I've also noticed im the only one enjoying the 90 degree weather
because my body temperature seems to be 5° cooler! So to me that's a
plus! Im glad we don't have ac because I about froze at my moms house.
Which I don't mind this side affect :)

Mornings are easier with the vimovo. How ever I need something more.
The pain in my legs is worsening. I didn't think it was possible for
them to ache any more but I was wrong. I can't find relief each day
the pains worsen. Im trying to walk it off. But I've been doing some
research on different types of medications...that I am going to talk
with my doctor about june 1st. I trust this doctor until I find a new
RA doctor which my insurance is still at a standstill...even after
I've called three times last week.
For the most part I feel fine. I've been under a lit if mental stress
lately due to surrounding family and my house has suffered greatly
from the last flare..which always stresses me out.

But life goes on. Day by day. Its the little things that make your days count.

I also had some set backs with my weight loss that put me in a
funk....the one thing I have to keep in mind is everyday is a new day.

Meeting Team Knaup

Team Knaup is the name of my walk for lupus now team. I have never met
a single member in person until now.
Team Knaup hosted a bake sale/cook out to help raise awareness and
money for Lupus research. Due to distance our team captain Beverly
Knaup couldn't be there...however we felt her spirit and moral all
day.
I loaded up the family and we took a road trip down to vincennes
indianna. Like I said I was very nervous about how I was going to be
accepted to the team. Arriving super late didn't help my nerves any.
It seemed the team knaup members knew the instant I pulled up.
They each came to great me with open arms like they had known me
before. The first to meet me with a broad smile on her face was
beverlys mother jackie.
They handed me my.team shirt and instantly started taking team photos.
It was a great day. The sun was out and it was so nice to put names to
all my team mates.
I didn't stay long...but it was absolutley worth the long haul! We
don't have the numbers yet about what was raised yesterday...but
to....that wasn't the most important part of it.
People who came read my friend and team captians story ....that means
more people will learn about this awful disease.
I've found a huge support system in my walk for lupus now team. Im
thankful everyday for god putting. Me and beverly.together. she is an
amazing friend...amazing supporter....and an amazingly strong fighter.

"The wings of team Knaup are filled with hope!"

A good husband

I would like to describe to my gentle readers what trying to sleep is like with lupus.
Night times are hard because it seems like that's when the pain hits the most. I find the only way to alleviate the pain a little is to have my husband lay on my legs. The pressure of his body makes my legs stop throbbing.
On my bad nights this is how we try to sleep if I can lay down at all.
Jeremy sleeps with his head at the head of the bed and I sleep with my head at the foot of the bed.
Jeremy then uses my legs as a body pillow for him putting most of his weight on me.
This is how we have slept the last week because of the dramatic weather we have had.
I just cannot. Help but think "what a guy'

ARRRRGGGG i HATE YOU!

This is a phrase I repeatedly say to myself when I go for my daily walk. “I hate you, I will beat you.” I chant this like the little train who thought he could. The whole two miles I walk I grit my teeth and focus on the path ahead of me, and chant.

I’m trying to think of good analogies to help people understand what it feels like to walk with lupus, or to do any kind of exertion. So imagine with me… we are walking… the first few steps are uncomfortable stabs of pain, like walking on glass, or perhaps some one kicking you in the ankles. Not bad… right? But then I say hey lets walk a little faster we have to get our heart pumping more…This is when you begin to think…”I’m good I don’t really want to..” but I make you. Suddenly you feel a warm slow burning pain in every single one of your joints. As we walk a little faster its like someone has injected your joints with kerosene and has used a torch to light your joints on fire.
No amount of water, or rest can put out the burning aching flames. Every step you take feels like this. Someone’s kicking your shins, and ankles while your knees and elbows are burning. Your whole body screams stop sit…don’t go anymore.
I didn’t mention that on top of this joint pain.. You slowly noticed that each breath you take feels like you are sucking in the fire from your joints. The quicker your lungs inhale and exhale the faster the flames spread across your chest. Until the burning subsides and the leaves a knife sticking through your heart.
So Now you realize you can’t go on…and I say “hey are you ok? We haven’t even made it a block yet? Sure you can make it two miles?”
I am proud to say that with the pain in my chest to a very minimal I can now walk with nice big deep breathes with no pain. However each step is agony. Today was a bad day for me. The weather has dropped very cold. I could barely get out of bed today, and I’ve had to have help up and down stairs. I still insisted on my evening walk. I have to. I feel like if I lay in bed, lupus is winning another day.
My neighbors probably think I’m a lunatic. I walk with my head down, music going, and on my last mile I grunt, and scream, and ARRRRRRGGGGG my way through. I grit my teeth, and hold my eyes directly in front of me. The chanting ensues. After the first mile I go into a euphoric state of mind where I meditate all the pain away, and feel numb, I have to mentally think about picking up my feet to walk. But I did it. I’m doing it… I’m beating lupus. I am.

Feeling discouraged

What a day. I woke up today so ready to go to my doctors appointment to tell my doctor all the good things i've noticed.

.... Instead of my doctor who came in a nurse pract. came in because my doctor apparently had to leave.

She asked:

Why are you here today?

Me: Dr. Davis wanted to see how i was feeling after a month of my new meds, and to discuss my blood work he drew last time.

Her: oh. your blood work looks great.

Me: What was my inflamation level?

Her: Oh numbers don't matter. Do you have any questions?

Me: a lot. i haven't had my period since my last visit? is this due to my medications?

Her: i'm not sure are you pregnant?

Me: I took a test it said negative...

Her: Then probably.

....... silence.....

Me: i wanted to discuss with dr. Davis about the use of another NSAID... i've read that the one i'm on is pretty hard on my kidneys.

Her: *Glances at computer* *snorts* youre 24, i don't think you have to worry about your kidneys....

Me: actually i have kidney damage and have to have my blood checked every six months to make sure they are functioning properly.

Her: oh. Numbers don't matter on medication, just keep taking it.

Me: right...... as i roll my eyes at her.

Her: so do you have RA? why are you here today?

Me: well if you looked at my chart it would tell you i have lupus, and i'm being treated for it.

Her: i doubt you have lupus. you seem fine. your blood work was negative...for inflamation.

Me: again if you looked at my chart you would see all the troubles i've had and why they diagnosed me with lupus, and they found lupus antibodies in my blood.

Her: oh well that doesn't mean aanything. You seem fine today.

Me: Obviously you don't know much about lupus. so i'm pretty sure we are done here. Your ignorance is astounding. See ya.

Her: well i'm sorry have i offended you?

Me: ya, youre pretty ignorant. Im over it. i'm out.

I walked out of the doctors with no questions answered. And feeling absolutley devistated. I felt completely degrated. I am making an apointment with my normal doctor about my ankle since she said since i'm walking on it its fine. ug.. stupidity.

So no answers today kids. i don't know what i'm suppose to be doing. she didn't order another test to check to see if the inflamation has gone down since my i began the medications. no reductions... i'm just fuming ... thinking i should have punched her in her face. how could you treat someone like that?

My disease is very serious. I'm fine one day and tomorrow i never know what it will be like. Today is a good day. Today i can pick up my kids....but tomorrow...is another story....

i feel so disapointed. i was so excited to tell my doctor about my weight loss, and my increase in excersize. I wanted to thank him for what he was doing...so i guess i'll just "keep on swimming" keep on going...doing what i've been doing. .... . .. . .

Oh that reminds me!
I told her the pain in my chest is getting better...
she point blank looked me in the face and said you've only been on the medications since march, you can't possibley notice a difference yet.....

wow.....

that lady needs to find a new career....

so until next time folks.... lets hope i keep "feeling" better. I shed a few tears in the truck on the way home. rolled the windows down and blew the radio... how can people think what i have is not serious!!!! it slays me on how little people know. Thats why i'm on a mission to make people understand what its like to have lupus...it is real...it is devastating....it really hurts......

TAKE THAT LUPUS....AND YOUR LITTLE ACHE TOO!

This may not mean a lot to most people, but what I was able to do today made my heart almost burst with happiness!

Before my treatment, I had a horrible pain in the center of my chest that never ever went away. Every Breath I take hurts. When I did anything to physical it hurt to the point of tears. Any time I went for a walk the pain would worsen and I would try not to breath. Even just walking to the mail box.

Today I danced to my absolute favorite Richard Simmons DVD like I normally do. I use to be able to only accomplish a few warm ups, and some slow songs, before the pain in the center of my chest would become intolerable. ......

After taking my medications for a month… Breathing doesn’t hurt. The warm ups were becoming easier…and TODAY… I danced TWO fast songs, and the pain didn’t become so intolerable that I had to quit. Its still there, but its only a dull ache, one I can manage with. I was killin it my living room I was dancing so fast and so hard, it was amazing! I was able to inhale quickly and not want to die. I actually had to stop because I was so pooped! Not because of pain!!!!

That is a huge huge step for me I can not wait to tell my doctor next week!!! I’m beyond excited! I just want to hug him and say thank you!

Now that I’ve rested for a little while, my chest is a little soar, but not like it would be. I could even raise my arms over my head…this is something that is very difficult because the arthritis in my collar bones are so severe. My joints are to stiff…..

I feel rejuvenated…. I feel like I want to start jogging again! But lets not over do it :)