...dont be rude...

Dear gentle readers...

Please don't take offense when im out and about and do not acknowledge you ... or look at you like a crazy person as you wave excitedly as you see me...and I have to lean over to ask who ever is standing next to me who is waving... I've always had bad eyes..they seem to get worse every year. I worry it's part of my genetics my mom is absolutely positively useless with out her glasses.

Part of my bad eye sight is genetics...the other half is a side affect to a medication I take. I have to gave ny eyes checked every six months because of it.

Im finding it more and more difficult to see facial futures on people at a slight distance. You have to be in my two feet two feet range. So if I 'ignore you" please do make it a point to say hello. Its frustrating to are a blur of a body and an even blurred face.

And my gentle readers...im dreadfully sorry if I don't keep my evening appointments I get invited to so many jewelry party..bingo events...etcetera .... I usually do have every intention of being present if not to buy anything but just the pure joy of being able to have a conversation that doesn't involve talk of the lastest bodily function.
However through out the day I literally loose my mind. I know other stay at home mothers have their whole life organized but im not one of them. In the winter my body doesn't function at all right...and sometimes by the time jeremy gets home from work it feels like I've been awake for days. So after we sit and eat im beyond ready for bed and then as I gently lay my head down on my soft pillow... I remember crap!! I was suppose to go that thing. One day ill be more energetic...I promise

Lupus update!

I've been feeling great! Until the cold front came in....you know the rain that brings the snow...

We have had an unusually warm fall. Its been excellent.  But I feel the dull ache in my legs settling until june. When I finally thaw out.

I've been learning how to make choices this past month. Its hard. To make a good sound healthy choice.   Here is a list of bad choices I've made in the past week that affected my lupus....in a not pleasant way...

1. Id given up soda...but caved the other day and indulged in a huge 32 oz fountain drink and a iced mocha...the sugar made me hurt horribley that night. And i've decided to stick with my no soda...

2. I drank beer. Why would that affect you? You ask? Beer turns to straight up sugar so it affected my body the same way the cola does.

Being a hard headed person I have to remind myself why we don't do that. Why we shouldn't indulge in these amazing things in life...they are bad!! I have to repeat that when I see sugar. I have to remind my self of the pain.

I've also found a work out routine that has really helped me with my joints.  I've been doing yoga 4 times a week...its really just a series of simple targeted stretches but im very stiff if I don't do it in the a.m.

I've also picked up belly dancing because its easier on my joints.  I still have to remain very careful about my joints. So im learning what I eat makes my winter worse. Hopefully yoga can pull me through till spring...

By the by!! My best friend and inspiration is in remission with lupus....words and tears can not express how thankful I am...I will get there one day too...I just know it.

Gearing Up for Winter

Today a cold front came through knocking me for a loop. Reminding me winter is very close. I came down this morning with a rheumatic fever and my joints turned achy and red. Nut im fighting it. Today I rested. I took a pain reliever on top of ny normal doses. Im hoping this doesn't keep me down long its bearable. But I hope I can fight to keep it that way.

Today is just  an awful reminder of what I went through last winter. The pain was unlike anything I have ever endured in my life. I can't help but behind a funk when I wake up with a chill in the house.  I get very depressed.  I can't help but fear if this winter is going to be as bad as last winter. The negative Nancy in me says your doomed crawl under your blankets and don't come out till next june.the positive side of me says dummy get prepared. Learn from last winter.
So I stole my moms space heater...stocked up on socks (no mom I didn't steal yours I baught my own) and baught me mittens of all kinds. If I let my fingers get even slightly cold im done for. It takes me forever to warm back up.  I also baught three bottles of that aches and pain bubble bath soap. My Granny knitted me a scarf. So I plan to keep as warm ad possible if I leave the house. Hopefully with me learning a bit more about my pain management this winter/fall will he more bearable.  As long as I avoid flus and cold weather It should be smooth sailing!

50 days no flare.

Im happy to report that I've not had a flare for almost 50 days! I've had pretty yum days but not to the point death looks inviting.   My joints are tender from this cold front but I keep as warm as possible.
I've wondered if my flare has laid low because my menstrual cycle was non exsistant for two months. But now that I have my period again...tonight I don't feel as great as I have been.  Im almost wondering if I were to have a hysterectomy if my flares would stop altogether. And only pop out under stress.

I feel best when my periods are irregular.  Which is about every three months. I have three months of perfect timing and then two months where my cycle is just way off.  I've been tracking every day of my cycle since june. I know there is a connection between my hormones and my lupus.  

I've taken advantage of my good days.  I still only have so many spoons to use a day. I was able do some house work with out crying at night.

I also stopped the mirapex.  It was the parkinson medication I started in june. I really liked it it worked for my RLS but it really messed with my moods.  I have been very irritable and more aggressive since taking it.  I can't deal with that side effect anymore.  Ill just have to suck up the pain until I can get money to try another medication.

Upon stopping the mirapex. I only have had a few withdraws which is good just the runs and jitters.

Hopefully I can blog again in a few weeks and say im maintaining a flare free record :)

overwhelmed

My appointment today went great. I think. Switched meds added new...ya know the routine. Today I had to confide in my doctor something I hate to admidt. Im dealing with svere depression and severe anxiety.  These emotions are not something new to me but they have progressively gotten worse.
She recommended me to see aa therapist....every nerve in my body clamped shut and my head screamed noooooo absolutely not...I almost began to tear on the spot the very thought of opening myself up to some one luke that scares the living hell out of me. I can open up to my gentle readers because I can't see your face judging me.
I know I need help. I suffer from seasonal depression disorder very badly...it has already begun.
My anxiety levels haven't been good since about late june when I started taking the mirapex. I can't handle people...the only people I can tolorate are the ones im with on a daily basis. I confided to Jeremy that I feel....overwhelmed. and I need help. I need a moment to catch my breath. So I've decided maybe I should seek help.
Another thing that isn't on my good side is im going through withdrawls everytime they switch my medications.  If you have never had withdrawal let me tell you how it goes......
headache
Shakes
sweats
nausea/diarrhea
Body tremors
Severe body aches.

My worste withdrawl was from percoset. It put me in the doctors office bcause I thought my appendix was going to bust. It took two weeks to get over that list of symptoms...I even had to break my o my rule in life and use supositories..... just so id stop vomiting long enough to sleep.

Its brutal. Now with each med change I have slight symptoms....
Headache
Body ache
shakes
Sweats
Ill take that I guess.

Its a rough emotional road im on. Im having more days I want to give up....but I still know I've got do much to look forward to.

Can you OD on TUMS?

Wow wee! Talk about uncomfortable.  My new medication nebutone is giving me heart burn like you wouldn't believe!!!! Its so bad if I lean over I will vomit straigh up acid.  My throat and the back of my tongue are rampant with blisters from this fiery acid in maaah belly!!

I do not have issues with heart burn normally.  Occasionally some of the meds will upset my stomach and ill take a tums to ease the nausea ect... but the past two days I've had to resort to zantazc 150! And its not giving me any type of relief.  I took my last dose last night and will not continue until I see my doctor
Last night I couldn't sleep because if the acid flames. And today I have only eaten pop corn (plain) and literally a whole bottle of tums to find some sort of relief.  Can you od on tums hehe? My magnesium levels should be awesome after this week ;)

*Sniffle*

I am the biggest baby ever when I am sick.  I whine, I cry, im needier, I don't even recognize my self when im sick.  
I seemed to have picked up a cold....oh glory day. My tonsils are already abnormaly large so just the slightest nasel drainage makes them larger. When I bend my head or open my mouth to wide my tonsils make me gag.
Tonight when I lay down on our sick wedge that puts you at a 30° angle my lymphnodes are so swollen in the back of my neck they hurt to touch.

Now im face with a new dilemma.  I've never been able to take cold medicine...im on immune supressents..should I stop taking them until I feel better? Or since my immune system is already down does that even matter?
I can't really take cold meds because I react very easily with them either my heart skips beats or I can't function for three days....
I would get sick on a weekend when I can't call my doctor.  So ill ride the wave till monday.

I think colds and flues tend to be a little harder on me then others.  I think its because im already in so much pain...and add more body aches on top it feels like im just over loaded...and it takes me longer to heal up.

Hypothyroidism?

Where the heck is the thyroid gland??





The thyroid is a butterfly shaped gland located below the larinex, it releases the hormone metabolism.

I honestly didn't know much about about the thyroid... i knew that people with hyperthyrodism had trouble gaining weight...and people with hypothyroidism...had problems loosing....would you know... i'm being tested for hypothyroidism.

I had some blood work done at my RA doctors office but i never recieved the test results... my family doctor called and got them a few weeks ago. She called and said i needed to have my my blood work done again because my numbers were very high.

My BUN/Creatin were 20 which is high...and lets the doctors know that something is wrong and whatever it is, is in my body before it enters the kidneys which is good...its not my kidneys. My alkline phosphate numbers were extremely high as well...which also kind of points to the thyroid not working as it is suppose to.... so what does that mean for me??

I sat down and thought about how i've felt lately....
*tired
*achy (achier)
* ac, has been hard on my joints even more so then normal.
* i've had trouble swollowing... i get choked easy and often times wake up gagging because i choke on my own spit...how sad is that?
*Even more depressed then normal.

I blew off these symptoms... i've got other things to worry about. Then i got to thinking about my weight struggle... i've given up on loosing weight because i gained ten pounds while on weight watchers...so i've started stuffing my face with any thing and every thing again...and haven't gained a pound.... really body? you like junk food?

I know that they can help balance my thyroid with a medication...it takes a while to adjust to get the right dose. I don't feel rattled by this possibole diagnosis. I feel its something easily fixable... just kind of sucks its probably something else that i will have to deal with the rest of my life... I guess I'm relieved that it wasn't my kidneys.... i was very worried that with my numbers being so high that something was wrong with them....since i have so many problems with them.. we shall see.

I also find it odd that the thyroid is in the shape of a butterfly. how ironic right?

Me and Bev Spoonies for life!

This is a picture of Beverly Knaup (left) and ME!(right) Bev is a
lupus warrior like my self! I met her through mutual friends on
facebook when i recieved the news of my diagnosis of lupus. I had no
idea what to do, where to go, what to ask, what lupus was or what it
ment for the long haul....

And like a sign from the good lord above, i logged onto face book to
read my news feed i scrolled through all the bs of "farmville" and
Petville... and a link caught my eye. My former beloved english
teacher Mrs. Bolinger posted a link to a site of some one raising
awareness for lupus. Lupus...the word that had been haunting me the
whole week. .....

I decided to send this Beverly Girl an email... seeking advice and
guidence asking her about her fight.... i didn't know at the time that
email would lead to a long lasting friendship.

You see the ironic thing is, we both went to Marshall, we Both had the
same teacher, but we never met. She now lived in California...and i
lived in marshall...

The emails began. Sometimes we would write books to each other. I'd
never confided my whole self to any one before the way i could speak
to bev... she new exactly what i was going through...she knew with out
me trying to explain anything... i'd never talked to someone who had
lupus. Going through the same type of daily trials.

two years have gone by, she has taught me so much... 1. being
determination, don't stop at just "well we think"...
2. Educate- research everything, inform anyone who will listen...know
your stuff.
3. NEVER EVER HOLD BACK- this is something i'm still working on....
but she is helping me get through the fear of talking to doctors.
4. LIsts- apparently they are important :p

After two years of pen palling it up on the old email and snail mail
we finally got to actually meet and give the gentle hugs we always
send so far away... she is just as amazing in person as she is through
email...except her energy and fight are little more contagious in
person...

Beverly is definatly a sister from another mister :)

what a night.

I took my new anti inflammatory medication before bed time.  I was so wiped out I was laying on the floor with the kids and that'd where I remained the rest of the night.

It took everything out of me.  I felt weak shirt of breath luckily my heart was beating at a normal pace.  I have to watch my heart rate because I have sinus tachycardia.  Quick lesson :   the sinus node is located at the top of the heart...it produces your hearts electricity.  In a healthy heart it sends electrical current in a complete circle around the heart.  In my case the electricity in my heart. Chooses different paths and sometimes not making a full circle.  This cause my heart to pause mid beat and speed up some times a little to fast.  When I start to have these symptoms I take a daily pill that help me.  I stopped taking them when I was pregnant with justin and surprisingly I haven't had a spell yet.

Any way back onto last night as im laying on the floor I feel like my chest weighs a ton but luckily I can keep myself calm.  Then the fire begins.  My body turned feverishly hot and I was sweating to the point it was pooling under my back.  But I absolutely had no energy to get up.  I started to pant a little but I finally started falling asleep.

I slept on the floor.  When I woke up my body temperature seemed to be back to normal.  But I feel jet lagged from lack of comfortable sleep.  I think ill wean myself into this medication.  Im suppose to take it three times a day but im going to work on getting use to it at bed time first!!

Maybe that's how this medication works...it burns the arthritis right out of you haha. :)

dear walmart pharmacist "shut your mouth and hand over my scripts'

My doctor appointment went awesome today.  Im trying out some new meds to help with inflamation and increased others to help me sleep.  All I could think of was....'i think I need a bigger box"

I go back again in 4 weeks to see how the meds are doing. I feel confident I will find some relief.  

We aren't treating my fybro just yet.  She wantsbto get some of the joint pain under control...because the last month has been awful.

After my appointment I went to pick my meds up.  The pharmacist always pulls people aside to tell them directions on new scripts ...

She gave me a "are you serious" look.  My medication is a pain reliver/antiinflamitory. Im suppose to take it three times a day.  She said ok on this one you should really only take it when you are feeling a little sore.  I said oh ya? That's why im prescribed to take it three times a day.  She said and don't feel the need to take any over the counter antiinflamatories because that's what this is.  I said really? I had no idea!!?? She gave me a funny look like I was serious and then i rolled my eyes at her.  

I hate people like that...ok I never hate anything that's a strong word.  I extremely dislike when people 'think' they know what you are about.  I hate when they look at you like you are some skum trying to get pills.  Or whatever.  Wouldn't acceptance be grand?? Wouldn't it be great if people just shut up and did what they were suppose to do rather then sit back and judge others by what's in their medicine cabinet?  

White coat phobia

Im not sure sure why I still have this but I do.... here it is four in the morning and the anxiety has already kicked in.  I feel I can trust the doctor im seeing today.  

I have been getting worse with my RA...im not sure if its the weather, my hormones, or my diet slope.  

So I decided to talk to my doctor about different treatment for my ra Depression has already sunk in with the thought of august being here.  I feel after September its winter.  Winter makes me cry a lot.  Winter/fall/spring = agony for my joints.  

I've also come to terms with the diagnosis of fybromyalgia and am ready to start treatment for it.  

I have my list of questions, meds, notes, all ready to go.


I feel im loosing good days again.  However.....im not loosing spoons!!!

This week is a busy one for Team Knaup we have a dance for a cure in olney hosted by my team mate lori! I've been down right excited about the dance....but then I got even better news.... my team captain beverly Knaup has traveled all the way from california to join in on everything...absolutley ecstatic about that!

In fact I got to meet miss beverly yesterday.  For my gentle readers who don't know who she is....she is an amazing girl who flew f-16s...turned lupus fighter.  She is the first person I ever talked to about my diagnosis.  Beverly continues to fight for her life...and even with her struggles still manages to help others like me cope, understand, deal with the heavy burnden of lupus.  AND TO BOOT she is my team captain of the walk for lupus now fundraiser!

We officially met yesterday and I felt absolutley at ease with her like it was normal for us to meet for lunch like we have been doing it for years.  It finally felt great to be around someone who just knows.  Knows about my worry of the sun and heat with out even mentioning it! Knows why im more sluggish then most... I didn't feel alone.  I felt stronger just by being around her.. I've never really associated with to many lupus fighters...it felt amazing.  

...Well its not like its cancer...

Believe it or not I hear this a lot from people who don't comprehend my diagnosis of lupus.... well its not like its cancer....

No its not...cancer can be treated and odds are you have a heavy artillary to fight the horrible disease.... having family members struck by cancer and watching their battles does not look like a walk in the lark...at all..but they have hope.  Hope is something I just have to have faith in.  Hope for a better day...

Another comment I've heard .... well at least its not something more serious!... ya your right...organs shutting down doesn't sound very dire to me either.

My favorite...well ill trade you I have MS.  God that's horrible...no I wouldn't want MS but my diease doesn't have its perks or good days either....  the sheer pain I feel in my left arm would astound all you "optimistic" people.

I get frustrated when our disease is not takin serious.  Could it be worse?? Ohh you betcha... lupus means im more susceptible to lymph node cancers, complete and total rhenal failure, bladder cancers and failure, lung diease, liver failure....these are all very real things that I may not have to face today....but its a very very real possibility for me in the future...

I sure count my blessings when I see others worse off then me.  Trust me I pray to the gods every day when I only have to take seven pills a day verses twenty....but when someone tells you a diagnosis... don't ever say it could be this....

Because the day they decided to tell you...was probably a day they could barely get out of bed...that goes for any diease.   When some one tells you their diagnosis...you don't have to try and make it an optimistic spin...or a moment to say sorry...simply ask are you feeling well latley? It means a lot to people who have a chronic sickness...

If I knew that I had to walk through hell like they say chemo is like...and trust me I've seen my share of cancer fighters...if I knew like them they had a fighting chance to beat a disease for good it would be worth the hell....because I live in this hell every day...I just choose to smile.
I respect each one of you who have to fight.something wether it be an addiction...autoimmune disease....ocd... cancer...downsyndromes...parkinsons...fredicks disease...infertility....we are all fighting something in one way or another....

We just have to remeber each one is different.  Moons wants to trade places with anyone...but we should for sure conciously think about how the other person feels about their diagnosis.

What is fibromyalgia?

Today a dear friend of mine was diagnosed with Fibromyalgia. It braught
back painful memories for me....

For years my family had me convinced that Fibro was a diagnosis
hyperchondriacs received....

However after speaking to a professional and other patients like me the
disease is very real.
Fibromyalgia is a disorder that involves pain accompanied by fatigue, sleep
ing disorders Researchers believe that fibromyalgia affects the way your
brain processs pain. Its kind of like your brain is overloaded with pain
signals. So there for increases the amount of pain you feel for anything.

Fibromyalgia usually happens when other disorders are hurting the body such
as lupus, RA, and restless leg syndrome.

There are certain pressure points that your doctor can touch to make the
diagnosis. Let me tell you when he pokes you in those spots you will cry.

I was diagnosed with fibro and RLS. Both are incredibley painful. RlS keeps
me up all night because of the throbbing. I've been put on dopamines for
rls.

My fibro I am not currently taking medication for I just came to terms with
the diagnosis. I have an apt August 4th for treatment options....

When people hug me...my kids lay on my chest....massages...are all very
painful. I hate carrying my kids because their little heals always seem to
find those pressure points...its real...and it hurts.

A Day In The Sun

"Two-thirds of people with lupus have increased sensitivity to ultraviolet rays, either from sunlight or from artificial inside light, such as fluorescent light, or both. Whether or not you are photosensitive you should limit your exposure to ultraviolet rays, especially outdoors, as excessive exposure to the sun can cause lupus to flare."


I have always been sensitive to fluorescent lighting.  I get serious migranes and body aches.  I learned that in 8th grade when our science class got new fluorescent light bulbs by the end of science class my head would feel like it was going to bust and my body felt lousy everyday.  Im glad science was my last class of the day.  

After yesterday ... being out side all day I've discovered that I am extremely sensitive to uv rays from the sun.

Uv rays are at their strongest from 10am till 4pm.
They are stronger when reflecting off of water.  

I was outside between these hours....on water... I felt a little achy coming inside but by 8pm I was absolutley miserable.  My joints were so swollen I could barely move.  My whole body ached.  

Now I've made it a goal to shop for uv protected clothing. Im definatly reading sunscreen labels from now on and see how well they do with uv not just sun!!

Ifact I will share a shopping site

http://www.sunprecautions.com/

Getting Active

Today I rode a bike. I haven't pedaled myself on a bike since I was 12.

I didn't realize how sedimentary I had become. I've missed out on so
much like bike riding, walking, playing games, just living!

I sat back and relized what all I accomplished today and it literally
makes me giddy!!!

Today I went to walmart with both kids. Shopped for some odd and end
things...went to the post office...realized we lost justins shoe had
to return to walmart and retrieve it...then I walked a mile with my
sister in law and mother in law...went to a birthday party for
toddlers bymyself with both kids...came back to my mother in laws and
built an entire village un the sand with my niece and
daughter.....then played an hour and a half if bad mitton with the
family....then rode an actual bike two miles...and topped the night
off with a four wheeler run.

Today is a huge achievement for me. Since this parkinson medication I
don't have this horrible dull ached in my extremeties and I've found a
muscle relaxed that is actually working fir me anim sleeping...its
amazing what sleep can do for your motivation.

What really got me was when I arrived home thus evening...I didn't
collapse into a balling squalling heap of exhaustion and despair. I
felt ok. I obviously was pretty tender jointed and my legs are very
soar tonight but the point is I lived today! I wasn't on the sidelines
today I was playing...and that just made my whole year.

View From the Top

Lupus is an Up Hill Battle....

As a Lupus Fighter You never Know What to Expect...

Somdays Its all we Can Do to See the Middle ......

Before we start sliding to the bottom again....

We Keep our sights at the top of the Hill ...
Even if we Don't know what is Beyond the Top......

A few of us Fighters are lucky to reach the top....

I Hear the View is pretty amazing.....


But Still....The presence of Lupus is always there.....Even after you reach the top




Lupus Lingers like a Dark Cloud....waiting....

to make you scurry back down to the bottom.....

Hope Guids us like a beacon

It keeps us going...Keeps us Fighting....It keeps the
Hope Alive....
That One day....

We will live on top of the Hill with not a cloud in sight.......

Exhastion

I've been so exhausted lately I can't even keep a straight thought.
Im up now due to RA pain from lousy weather.

Here lately I've been going to bed as soon as I put the kids down...my
head barely hits the pillow before im out cold. Once im asleep poor
jeremy can't even wake me up. The kids wake me up before seven
everday. And the past week we haven't had a single nap.

Naps are vital to a lupus fighter. If I get behind on naps its like I
physically and mentally can't function. I get spacey. Forget the
simplest things. For example u got the kids milk yesterday I tried to
put the sippy cup lid on the milk jug and got bad because it wasn't
fitting....and then I felt like a moron. Sometimes even carrying on a
conversation can be hard.

Not to mention getting behind on sleep...seems to ease me into a
flare. Im hoping this weekend ill get caught up before its to late.

Its funny the sleep patterns us lupies have. One week we may be up
until 4 am the next week we can barely make 7pm.

Well its 530am now....im hoping some of this joint pain will ease so I
can at least get a couple of hours of sleep before my kiddos are wide
awake... o_O. to bad caffine causes flare ups grrness.

Addiction....

---------- Forwarded message ----------
From: Alisa Green
Date: Saturday, June 11, 2011
Subject: Addiction....
To: "celtic_anubis7.alisa@blogger.com"

Well my week has officially ended with my new medications.

Things I've noticed

I have a very addictive personality.  I tend to become addicted to
things very easily and with this personality trait I tend to be more
aggressive more passionate and can easily be triggered with anger.

My doctor warned me about sudden and onset anger while taking the
dopamine medication.  I've noticed the smallest thing can set me off.
Very quickley and the rage spews through every tendon in my body
almost making me shake.  luckily I don't turn green and smash things
though I would like too.

So to keep me calm she has increased my prozac.  As of yesterday which
as we know takes a while to process through our bodies.

I've noticed the feeling of anger even in my dreams.  My grandfather
who actually has parkinsons who was taking the same medication I am.
We talked about his side affects and he said anger nightmares and
shaking made him quit.

Im torn because I don't like having all these angry feelings inside
but the medication is really working.  Two months ago I could barely
walk a block without cringing in pain. Now im walkun a mile and a half
like it ain't no thing.

Im really hoping my prozac will kick in and help if not I don't think
ill be able to take the medication.

This weekend my joints are still stiff but there isn't the pain of the
throbbing pressure...

I guess I nay have to disconnect my fb for a while and meditate more
in my walks.  Perhaps that will calm things and ill be able to cope
with this medication.

Always Starting Over

I believe this is something else that is incredibly hard about dealing
with lupus. Each month after a flare I have to literally start my
progress over again.

My symptoms of lupus start to flare a week before my monthly period.
Lupus puts ne in bed the day I start. Once I've started my flare
ends. But the recovery time does not. It usually takes me a week
after a flare to recover sometimes nearly two weeks.

If I had been walking 2 miles a day before a flare then when a flare
hits I can barely walk until the flare ends. Once it ends and I have
to recover which means lots of rest. Once i feel good again I have to
start all over again walking...taking it easy so I don't lapse into
another self induced flare.

Its very frustrating and can get discouraging. That is why im looking
for a treatment that will work for me. Finding the right combination
of medications is another bad part about having a disease no one knows
much about. When I find the right combinations of medications I will
have more and more good days. I wont have to restart my life every
month. And maybe one day I wont ever have to start over ever again
unless it was on MY terms.

Oh Snap!

My doctor put me on two new meds at my last visit.

Xanaflex to help me stay asleep.
Pramipexole to help with the never ending pain in my legs. Its a
medication that is actually used in parkinsons patients.

I've been taking the pramipexole for almost a week.... and Ohhh
Snnnap! Am I ever haing some lucid dreams! They are pretty intense.
It is listed as a side affect. Luckily im just dreaming of stress and
not something scary or I don't think I could tolorate the medication.
I have noticed the medicine makes me pretty shakey...which is ironic.

Im going to take it a few more weeks to see if I notice anything good from it.

When I lay down I have to constantly flex the muscles in my legs in
order to find any relief from the throbbing pain. Most people who
have an autoimmune disease have what's called restless leg syndrome.
Symptoms of Rls occur when your body is relaxing. Its
excruciating...pain. another reason for my RLS is due to the fact I
have un explained anemia. My iron is lower then 30%..such triggers
RSL.

I did notice last night after I walked 1.5 miles I didnt have pain the
moment I laid down. I was able to lay still for about 15 mind until
the pain hit and the restless tossing and flexing. Maybe it's
working. Only time will tell. I got this.

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 :)

Burning Through The Pain

I lie awake with throbbing pain

Some times I wonder if I’ve gone insane.

The pain courses through my limbs like fire
………Of this.................. I truly tire

I refuse to let the tears flow tragically
While my body burns in agony

Voices remind me to hold tight
Voices say “keep up the fight”

The tears I hold back begin to burn
Slowly now its my turn

Drowning, burning in my pain
Self pity has come to claim

Swallow the knot that’s formed so tight
I gotta keep up this burning fight

I see the light of another dawn

All i have to do is hold on

I will not take this all in vain
I will beat this burning pain

"Oh sugar sugar ...."

When you have lupus it is very important to watch what you eat. So many things we love to eat can cause a flare up for us Lupies! I did not believe this until I started a food journal. I wrote everything I ate in a day, and documented how I felt at night. I did this for one month with out changing my diet.

The next month, I started weaning myself off of refined sugars, and caffeine. I noticed a huge difference just by cutting sugars out. It was hard. I use to smoke, and I gave that habit up 3 and a half years ago. Sugar and caffeine (I believe) are harder to give up than nicotine. Sugars aren’t thought as of dangerous. We don’t see people in the hospital hooked to ventilators do to everyday consumption of sugar.

I had to train my mind to view Sugar as straight acid. I started weaning myself off sugar very gradually. Instead of a cup of sugar in a pitcher of tea, I knocked it down to a ¼ cup. Now after several weeks I don’t add any tea to my favorite beverage at all. When I want a sweet drink I drizzle a teaspoon of honey on my ice. It was a big adjustment for me.

I still occasionally have a soda. Sometimes nothing beats a hot dog and a Pepsi.

My next goal is to wean myself off of whole grains. We eat a lot of whole grain pasta, and bread. I found out at my last appointment that my bodies needs complex grains such as pumpernickel bread. I don’t believe we should cut whole grains out of our diets, but I do believe that I should cut back on my intake. Our bodies break down whole grains, and they turn to sugar in our body, the more complex the grains are, the harder it is for our bodies to break down, so it doesn’t turn into pure sugar. So I can enjoy the things I want to eat more.

If you would like to learn more about foods and lupus I suggest this site

www.healthyimmuity.com

This is what that site had to say about food that causes lupus flare ups.

• 
  alfalfa sprouts (have been scientifically proven to actually induce a flare up)


• 
  Research has shown a diet low in bad fats (trans- and saturated fats) and low in calories in general leads to a reduction in lupus symptoms and flare-ups. Patients experienced extended periods of remission


• 
  Consume a diet that emphasizes natural, whole foods such as legumes, soy products, fresh fruit and vegetables, fish, healthy fats and oils to increase Omega-6 intake and nuts and seeds. Eat plenty of cold-water fish (halibut, herring, salmon, mackerel; canned sardines in olive oil are especially beneficial as they are high in Omega-3 EFA), which can keep inflammation down.


• Many lupus patients find that a great natural cure to reduce lupus flare ups is to exclude refined foods from the diet, most notably white sugar, salt, white flour, white pasta, and dairy.
  


• It is also believed that eating a diet that reduces acidity in the body is an effective home remedy to lupus flare ups.
  


• To reduce acid in the body, include plenty of fruits, lean protein, ginger, garlic and vegetables.
  

*slaps forehead* DUH!

Dear gentle readers,

I’m so sorry about my belly aching last week! Taking a nap this weekend made me realize WHY I’VE BEEN SO DOG TIRED!!!

My husband has been building a garage over the weekends. Normally I use weekends to catch up on rest. The past three weeks I haven’t gotten to do this. Sunday, I got to take a three hour nap before bed time, and today I felt great! Its amazing what a little sleep can do for the body and mind.

When your body is so worn out it takes a toll on your mental ability to stay positive. I know it puts me in a funk, and I begin to get very depressed.

This weekend was also a mile stone for me.

I dread storms, springs are very hard on me due to rapid atmospheric pressure changes. We had some pretty crazy weather this weekend. I noticed I was able to sleep.

Normally a few days before the storms begin my joints burn. No amount of heat, or stretching does any good. My whole body throbs. This time!

It was a slight burn, pain that I can tolerate. I didn’t even notice until after the storms left that I wasn’t in agony!

How awesome is that!!!!!!!!!!!!!!

Now this evening I’m feeling some throbbing because the temperature has dropped significantly and I got a little chill. I”LL TAKE IT!

Every day Choices

Remember that energy I was so excited about last week? Its depleted. One of the medications I take makes me very tired. Today I had to make a choice to either feel good , but be so exhausted I wouldn’t be able to do anything

…. Or……

Skip a dose today and get some house work done, and deal with pain later. That kind of put me in a why me mood. Why do I have to make these decisions.

Its not fair something so easy to do, has to be so complex. Then I have to remember there is always some one worse off then me. I guess my poor attitude started yesterday. My grandmother called and said its warm and sunny and I needed to take my children outside to play. I got frustrated because I had to make the choice of getting caught up on house work or taking them outside to play. You may be sitting there wondering why I don’t just do both.

OH THE JOY TO BE ABLE TO!

I can only do a few tasks at a time. Taking the children outside would involve me getting them ready…getting myself ready…chasing them, picking them up, and stadig for long periods. I would love to be able to do this with my children. But the sheer pain of picking them up repeatedly, or chasing them, utterly `exhausts me. Not to mention the pain I have to endure through the night just sucks.

I’d rather use my energy to keep my house caught up. This thought just depressed me. It makes me mad that I have to choose. I just want to do both. Be a good mom with a clean house. I get into a self loathing state when my grandmother gets on me about taking the kids outside yadda yadda …. I’d love to. I get so mad at my body for failing me. I have a 90 year old body with a 24 year old mind.

*Sigh*

Suck it up nacy and put your big girl panties on and deal with it.

A Lupie HAHA moment

Tonight the husband and I took the kiddos out to supper at one of our favorite chain restaurants. After taking our seats, I instantly grabbed a roll to butter up for my daughter. The knife I was usig slipped and sliced my finger.

I didn’t feel it but saw my ring finger was dripping with blood. The blood was rushing down my finger so I excused my self and went to the bath room. I held my finger in my hand while I rushed to the bathroom.

Entering the bathroom I realized I had blood running all the way down my arm! I instantly started to panic a little thinking I must have really cut my finger. My Hand was full of blood, and I left a trail of blood to the sink. I put my finger under the water and watched the blood flow very quickly from my hand and pool at the base of the sink. I didn’t want to look. I just knew the top of my finger must be missing! I let the cold water run over my ring finger for a while and then looked down. I couldn’t even SEE THE CUT!!! I quickly washed my hands and wrapped my ring finger up with a few layers of paper towels.

On my way back to the table I couldn’t understand how a paper cut could make me bleed so much! Then I remembered!!! My medication probably has a lot of aspirin in it. Luckily it stopped. And I had to laugh at myself for the sudden panic I felt.

So from now on I’m carrying some medical gauze and Band-Aids!!!

Negatives = Positives

Well I’ve stopped throwing up! I believe I’ve officially adjusted to the medications. I’ve noticed a few things.

1. I hate food. It taste like cardboard. I would rather throw up then make myself eat breakfast or lunch. I feel bloated. Food feels like it swells in my mouth and stomach so I have to force myself to eat. So I’m going to try to drink those protein shakes, instead of making my self miserable with food. At least the protein shake will coat my stomach.

2. I’m in a fog. Sometimes my eyes don’t adjust and I’m spacey. I’m having a hard time remembering things, so I repeat myself a lot.

3. Mornings my eyes feel like I have a film across them, and I’ve noticed my eye sight is blurry in the am. But I think its my glasses. My guess is my eyes are pretty dry. POSITIVE THINGS! Before the meds, every breath I took was agony. When I inhaled or exhaled it felt like some one was stabbing me with a knife in the center of my chest. Sometimes having pressure on my chest hurt. Even Justin or Elainna as tiny baby’s hurt my chest….

*Inhales deeply*

*slowly exhales*

The pain is tolerable! I only have a sharp pain when I’m walking. I can deal with that!! I forgot what it was like to not think about breathing! I’m still enduring joint pain, but every day I get a little stronger. A little stronger to do a little more. I can accomplish small tasks with out being wiped out. So I’m content with how my meds are working.

I’ve got this

One Week [check]

The first week of treatments are done. Bam. The beginning was rough. I was sick all day after taking my A.M. doses. By the time my P.M. dose came around, I’d just start feeling better and have to go through the whole vicious cycle again. One Week later! I still get pretty nauseous a couple of hours after I take my medications, but I’m not actually hanging my head in the toilet. So I find that a huge plus! My body is adjusting fairly well. Its hard for me to explain what I’ve noticed physically without me explaining “the before.” This is my thought process when I leave the house. I dread getting the children ready, I dread getting myself ready. Everything I do feels as though I’m walking through mud, and so I take a lot of short cuts, and need a lot of assistance to get simple tasks done. Its very frustrating and I end up not wanting to leave the house because I’m so tired, and I know the pain of doing these tasks will just be worse later. Tonight my husband helped me get the children ready, and I got my self ready on my own. Granite it was just a t-shirt, jeans and hat kind of day but I left the house feeling light. Like after all I’d done today hadn’t weighed me down. Each task wasn’t gathering at my feet like mud. We took our daughter bowling. Normally I would have been so exhausted all I would have been able to do is just sit and watch her play. Tonight, I Alisa, got off the chair and bowled with my daughter. Squatting at her level, and cheering her on! I was able to squat down, and get back up again. This is a task I never thought I’d be able to do again. Granite it hurt like a sun of a gun, but the point is I had the energy to be a mom. A mom that could almost keep up with her baby. I didn’t notice until half way through her game (which was only a couple of throws) that I didn’t feel the need to stop and rest. I didn’t feel the desire to sit down to catch my breath, or try to shake some of the mud off. During the car ride home, I gazed out the truck window in complete awe of the tiny task I’d completed. At first I was super stoked that maybe something was working. I can deal with the pain, but the energy is what I miss dearly. Then that awe turned into anger. Complete volatile anger. This is what I’ve been missing out on with my children. These simple every day moments. I wanted to come home and write the angriest letter to my former doctor for all those years of being told I was crazy. I wanted to literally punch her in the nose for all the days I’ve missed out. All it took was a doctor to listen to me. I know that anger won’t fix what has been done. All I can do is keep moving forward. One day at a time. One week at time. By the time I got home I was tired. Medicine time, and sick time, and time for the pain to begin from all the exertion I’d endured of playing with my children. It was beyond worth it. I have hope.

Thoughts on my RA apt.

Yesterday was a roller coaster ride of emotions. I think I hit every single emotion possible. I didn’t talk much about how I felt or what was running through my mind. Before I met the doctor I was scared. Nervous to the point I was shaking. I have a horrible phobia of white coats… on top of the fear of them telling me all this pain, all these symptoms were in my head. Like they had been telling me for 15 years. When I’m nervous, the only thing I can do is joke around, and it relaxes me. As I said yesterday, he isn’t a joker. He got straight to the point. He asked me questions no other doctor had ever asked me before. Simple things. He said “may I see your shoes?” I thought, what an odd person… I held up my foot. I was wearing my slip on boots. He asked why I picked those today. I said I hate bending over and tying shoes because it hurts, so I wear slip ons. He said yup. He didn’t ask my “why are you here today?” he said, “ I bet your here because…. And he listed all my symptoms.” I said yup… So I immediately relaxed. There really are others like me lol! Then we discussed Which joints I had problems with. Then he asked me to strip to my undies… of course I thought, once you have kids, anytime you go to the doctor you might as well go naked. I sat waiting on him in a paper gown shivering so hard it was hard to sit still. Why on earth…would you have the AC blasting in a rheumatoid arthritis office???? I was so stiff from shivering I couldn’t move well. He left for a while. By the time he came back I was literally purple. Maybe there was a point to that procedure. He went through my range of motion. He left and came back with a stack of drugs for me. He asked if I wanted to do this a more natural way with vitamins or if I wanted to choose a more medical route. He told me all the things I would have to take if I took a natural route. I don’t do well on vitamins. I get very sick, and they have an opposite affect on me. Most of the time. So we discussed Pills. It made me feel better he had two options for me. That he wasn’t objective to thinking out side of the box. He wrote down all the vitamins and times I would have to take them. He said if I couldn’t tolerate the affects of the medicine he was going to put me on, we would go alternative. The First medication he prescribed is actually an anti-malarial drug. Hydroxycholoroquine. Which I will be taking twice a day. This medication is suppose to help with my fatigue arthritis, rashes, and my unexplained fevers. While taking this medicine for the next 13 weeks, I will have to routinely see the eye doctor every six months, to watch for a calcium build up in my corneas. Or I could experience blurred vision. He also said I would probably notice it get difficult to distinguish between the colors of blue and green. This is the most “serious” of the medications he prescribed. He also put me on a muscle relaxent to be taken at night to help me sleep. However I don’t feel comfortable taking that every night. I may do it when I need it, because I hate being incoherent when the kids get up at night. Like I said before, I react very easily to medications. Which is why I’m usually prescribed what they call the “granny Doses.” The other medication I’m on is the same thing I’ve been taking, but with a coated covering to help prevent stomach ulcers while taking it. We discussed what to do with my mouth sores. He told me that my mouth sores were caused by acid reflex, I was absolutely perplexed by this because I never have an issue of an upset stomach. Especially after the gall bladder came out. He said I did, I just didn’t feel it, and gave me some suggestions on tooth pastes a more natural kind. Grreat… After all that he sent me to the lab to get all my blood drawn…again. I sat reviewing and dissecting all my emotions. The greatest feeling I felt was relief. Relief that someone in this world believed my symptoms and gave me complete hope that I can beat this. I’m a little nervous about how I’ll react to all the medications. I’m just hoping the next 13 weeks go by easy and quickly. Then I began to think about all the prices on each medication. Which put me in a “why me” mood. How are we ever going to afford this? I have to get better! But can we really stretch our budget that far? Why do I have to be “sick?” I’m not scared of the diagnosis of Lupus. You can either let a disease live you, or you can live it and beat it. That is my take on it. I’m not mad that I’ve been diagnosed with this. I guess it makes me appreciate good days, and sunshine and good weather more then most people. I know there is no cure, and I’ll probably have to deal with this the rest of my life, but I plan on having a hell of a lot more good days. I plan on being the mom I want to be, but can’t. I think I’m just happy to know I’m not crazy. I felt sadness. I realize now, that I’m just in a little pain compared to what I could be in. Compared to how normal lupus patients are diagnosed. I can’t imagine the pain being any worse. I can’t imagine the blood work showing any more inflammation then there was. I can’t fathom that there are more people in more pain than I am with higher levels of inflammation in their blood. It makes me want to hug every single person that has ever been diagnosed with this disease. I have a great deal of respect now. To know my lupus is so simple compared to what most are going through. I can’t wrap my head around it. We got to find a strong cure. I wouldn’t wish this on anyone. Also the hardest thing for me to change right now is my diet. I love carbs. But more then that... i have to change how i eat and when. I have to start eating when i take my meds to protect my stomach. Which means i will have to eat breakfest, if you know me i hate breakfest. I usually don't eat until lunch time. So today i sat and ate breakfest with the kids, forcing it down my esophagus bluuuck. I think that will make me sicker then the actual meds LOL

One Small Step in a Big Journey

FIRST OFF THANK YOU EVERYONE. YOUR SUPPORT WAS FELT TODAY. I don't know where I’ll begin for this.

I'll just start at the beginning. Me arriving an hour early to my appointment do to nerves. and jamming out to Phil Collins.

My appointment was at 1:00 and i went inside at 12:30 The receptionist welcomed me and asked for my insurance cards. They did not except my secondary insurance, and my primary insurance the cards or the group number has not yet been processed. So i don’t have those cards, but i had the name of the place and other important items. The receptionist firmly told me I would not be seen today with out those medical cards. I said well I’ll sign a paper stating I’ll pay in good faith. She said sorry ma’am we don’t do that here. You will have to pay $370 up front before we can let you see the doctor. I had to leave and regroup. All my nerves just left. I told her I’d be right back.

I went out to the truck and cried my eyes out to Jeremy blubbering like a big fat baby. Jeremy regrouped me and I marched back in.

I leaned over her desk and I said nicely but firmly.

“so you’re telling me, that because you don’t accept my secondary insurance and that because my primary insurance is slower then moses, I can’t be seen today unless I pull 370 from my ass?”

“yes ma’am”

I leaned a little farther over the desk. “do you realize I’ve been waiting 15 years to get to a doctor like this? Let alone had my heart set on this appointment for 6 months, and you’re telling me, that because you failed to mention this critical detail, I can not be seen? Is the correct?” I leaned farther.

“um, well, um… let me go talk to my manager right quick.” *waiting, still leaning.* “Mrs. Green, please have a seat, the doctor will see you shortly.”

*I smiled*

The doctor came in and looked through my chart and sat and stared at me in disbelief that no one had figured out my illness. He evaluated my joints and said that my hands and ankles have suffered the most. He could barely touch a spot on my ankles with out me yelping.

Then he torched a spot in my back that sent me straight up off the table. And I yelled

“YO! LETS NOT GO ALL KARATEE HIII -YAA on me k!~” he dryly laughed.

My new doctor has absolutely no humor. And didn’t like some of my jokes. But I did make him laugh when he touched that spot, maybe he is sadistic. Eek.

He put me on two new medications that should take about 13 weeks to help. I’m worried about some of the side effects, but he said ya gotta feel worse before you get better. I felt relief that he instantly saw what was wrong with me, didn’t question me. He spent an Hour and a half discussing all the possible side effects of my new medications, and the possibilities of the lupus getting worse. But he says he believes we can put it into remission as long as I do what he says…I said uh oh. He said first…. NO MORE CARBs. I said …..ok….. He talked with me about all my concerns and made me relax. So the next few weeks may be rough….

But hey I got the support and we got this

My Story

I first realized I was different from other kids my age when I was 9. While others skipped, jumped and ran with out a care, I was always two steps behind them holding my breath; so I wouldn’t cry out in pain with each step. At night when my mind wasn’t focused on who I was going to chase next, I was reminded of the pain that washed over me. I would cry through the night, and at times my mother would soak me in a hot bath to help ease the pain. Sharp pain in my ankles and throbbing aches in my knees were to blame. After many reoccurring nights of this, my mother sought the opinion of our family doctor, who promptly diagnosed me with growing pains and reassured us both that I would soon grow out of this “stage”. That was in 1995.
At age 14 my feet began to ache. Every morning I dreaded putting my feet onto the floor, because the slightest pressure on my feet felt like a thousand nails stabbing the soles of my feet. I knew if I limped to the shower I’d find some relief. My joints would loosen up and I could begin my day.
I ignored the pain and continued playing my favorite sport. Soccer. After soccer practices I usually felt frustrated with my self because I knew I was the worse player on the team, and the harder I tried the more my body would let me down. When I would take off to run, my joints would sometimes freeze, or my foot felt like it was going to shatter after kicking the ball.
During this time I also noticed smaller things, such as, buttoning my shirts, zipping my coats, or even holding a pencil, were becoming more trivial.
Age 16 approached and the pain worsened. I began to not want to play soccer any more because of the pain I experienced during and after a game. Cold weather became my mortal enemy. During the cold months I felt like my whole body could shatter. I also began experiencing swollen lymph nodes under my arms. They would swell to the size of a golf ball.
I finally decided to talk to my doctor about all the pain I felt. Her diagnosis was I was a very depressed anxious person. The pain I was experience was all in my head. Depression can make you think you hurt.
I couldn’t believe that all this pain was in my head. It felt so real. She dismissed all my concerns I couldn’t put my finger on what I was so depressed about. I really did like my life. I was happy with my friends, and my home life. The pain was the only thing I could think I should be depressed over. That was in 2002.
I’ll fast forward a few years to 2007. I’d dealt with exhaustion for a long time. However working behind the service desk at Toys R Us, I was happily cleaning the front desk and greeting customers when the worst exhaustion spell I ever had hit him. I was returning a customers item when I felt like my blood had drained from my entire body. Everything grew extremely dim, and I broke out in a cold shaky sweat. I remember the customer telling me I should sit down. I held on to the desk for support. I couldn’t pass out here. Everything felt far away, the voices around me, my eye sight. Luckily someone took over the service desk to allow me to retreat. I began shaking hard. My breath became fast, and I felt like my heart would literally jump out of my chest. I told my boss I had to go home. He excused me. I don’t remember the drive home. But I can tell you I slept for 14 hours straight after that. When I woke up I felt fine.
I’d had several attacks like that before but none quite as scary and bad as that one. So I decided to go to an electro physiologist. I wore a heart monitor for a month, and caught a few of my episodes on the recorder. He diagnosed me with sinus tachycardia.
With that diagnosis, he still didn’t know what was causing my sinus tachy. So I took a daily medication to help keep my heart steady. I still had a few more episodes after that.
2008 I began working in a nursing home. To get me through an 8 hour shift of lifting patients I would consume more then 8 Motrin a night. My Body would ache, and the episodes became more frequent the more hours I worked. After a few months of going like this I took a month off to regroup. During my break I found out I was pregnant.
My pregnancy was very hard. I turned toxic for unknown reasons. I managed to deliver a beautiful healthy, 6lb 7oz baby girl. After holding her I realized I had to find what was wrong with me. I wanted to be the best mother I could be. I couldn’t talk to my new doctor just yet about everything I’d endured with my former family doctor. I couldn’t endure being told it might be all in my head…again.
2009 I gave birth to a beautiful, healthy 8lb 9oz baby boy, after a very long difficult pregnancy. Again I turned toxic for unknown reasons, but endured the bed rest to become a mother yet again.
After my second child, things took a turn for the worse. The pain became intolerable. I was exhausted. Actually exhausted really isn‘t the best adjective to how I felt. I became lost again. I was so happy to have my two beautiful babies. However, I felt disappointed in my self. After watching other mothers play with their children, running, jumping, standing. The frustration would set in. I spent many times crying on the way home from the park, because I felt like a bad mother. Why couldn’t I do the things other moms could do. I wanted to get on the ground and play too. I wanted to pick up my children and swing them and feel the carefree laughter.
I got brave. I wanted to be that mom, who could do anything. I wanted it so bad. I broke through my fear of being told I was crazy and told my new doctor how I’d felt for years. Showed her my charts. She stared at me in disbelief. Her first words were “Why on earth did you not tell me this?, did you know this was why you turned toxic during your pregnancies!” I just looked at my shoes and said “because I thought you’d accuse me of being depressed, and I worried about people thinking I was one of those crazy depressed mothers.”
She ordered a special blood test immediately. One I’d never had before. It turned up positive for Rheumatoid arthritis. She then further ordered another special blood test, which shows the antibodies created during a lupus flare up attack. She told me, I believe you have Lupus. Lupus? What the heck is that? She never explained to me fully what lupus involved.
I loved my doctor, but she was not aggressive. She didn’t tell me what could or would happen with out treatment. I never took it seriously. I continued to struggle, and again I lost hope. Until I met someone like me. Someone who had the same types of bad days. The same types of aches. It sparked my hope. Hope that I would find an end to the pain. To be the mom I wanted to be.
I began again, with a new more aggressive doctor. She immediately agreed I had lupus. She went through the check list, swollen lymph nodes, loss of hair, pain in chest, red soar joints, rash on chest, rash on hands, mouth soars and so on. Then she took her wooden stick to look at my tonsils, but she stopped, and looked at my nose. She traced the outline of a butterfly, the faintest little butterfly rash across my face. She asked how long I had had that. I shook my head and had no idea what she was talking about. She held up the mirror, and I said oh that’s just my complexion, I’ve always had a hint of redness to my face. Everyone always asks if I’m wearing blush. She said, I’m afraid its another symptom to your lupus. My rash on my face only hurts during a flare up, and only turns slightly red. She has made an appointment for me to see a Rheumatologist. I see him for the first time March 21st 2011. I’ve waited six very long months to see him.
This year I am walking for lupus. I’ve finally found a name for what I have, most would be devastated to hear the words lupus. For me, it was a relief. I wasn’t crazy. In fact, I have a whole team of friends who are just as lupie as I am!


Chronic bruisings

Mouth sores i get every flare up

My hands normally My hands swollen during a flare up

Rash i get across my chest

What Is Lupus?

I can give you a medical definiton about what lupus is.

This information was curtsey of www.lupus.org

Definition of lupus:
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

What may trigger Lupus:
Genes
Environment
Hormones

Symptoms of Lupus:
1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
5. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
6. Kidney disorder – persistent protein or cellular casts in the urine Neurological disorder – seizures or psychosis
7. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
8. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies Abnormal antinuclear antibody (ANA)
9. Hair loss
10. Fatigue

What Living with Lupus is like for me:
* It prevents me from being the best mother I can be.
* small daily tasks are hard for me to accomplish
* skipping out on dates with friends and family
*daily naps are required for me to function
* I have to ask my husband for help…a lot.
Every day is a constant never ending battle. I fight extreme Fatigue, and at times I feel like the pain I suffer from is just too much. I’ve learned the only way to do battle this disease is to stay positive, rest a lot, and cherish the good days.
During a flare up I read inspirational quotes, hug my kids more, and try to laugh as much as possible.