Pitty Party ...

 

Yup gentle readers I'm not proud but that is pretty much how i look right now typing this blog... I'm feeling so sorry for myself its just ridiculous. 

 

I never blogged about my last doctor appointment.  Needless to say, it didn't go so hot.  i won't rehash all the good stuff tonight because i'm already pitty partied out. 

 

Tonight's topic is going to be

 

COLD INTOLERANCE 

 

Being cold to me is the wost feeling i can ever imagine.  Having Fibromyalgia I'm extremely temperature sensitive.  Humidity makes my pressure points feel like they are going to squish to death, and cold makes my body feel like i'm going to shatter. 

Once the temperature outside starts dropping so does my spirits. 

I have to sleep with a heating pad, under several blankets because I can't get warm.  Sometimes I have to take my rubby old bones to the shower and sit in the hottest water i can stand. 

 

Recently i had a pretty awful flare..  Mainly the worst one I've ever had.. These are not pictures of me, i found them courtesy of google.. but they were the closes images i could find that looked almost identical to what i've been dealing with. 

 

 

  Luckily the sores in my mouth weren't as bad as the flare up of 2010.  I can still talk... the steroid cream does wonders when my mouth ulcers are giant!! 

 

I just feel better being creative, and posting pictures, and venting... my tears have stopped and a slow smile has spread across my face.... mainly because i know i need to ...

 

PUT MY BIG GIRL PANTIES ON AND DEAL WITH IT!!!!!

 

oh and a bonus.. my nurse called today and left a voice mail to call her back ASAP ... well guess who didn't get to talk to miss imperative nurse.... yup that's right me.... so in my mind.. I've died like five times from all the different scenarios ... what a goober.

Anger.....

I'm not sure how my family deals with me... they must truly love me because during the a flare i get

*Hateful

*Angry
*Frustrated

I take my anger out on any one who spends  time with me.  Things i do i'm not proud of....

*Yell

*Scream

* Ignore people

*Short Tempered

Its like having no control of your emotional stability before a flare.  I get so frustrated because i know when a flare is coming on... Its like i have a full on panic attack and my brain and everything involved in my body...brain... just gets over stimulated and my i don't know how to hold in all the frustration...

 



My latest flare symptoms

*Agitation

* fever

*cold spells

*throbbing burning pain

*extreme joint pain and swelling

*hair loss

*GIANT MOUTH SORES

 

My Flare has been sparked by the recent stress I've under gone lately.  I had a very busy month with Pure Romance.. the fact that i killed my very best friend...adopted 12 new puppies.. and laineys first week of preschool.  

 

However good things did happen this past week... 1. I saved the lives of 12 puppies... 2.  i raised $550 for Team Knaup, to donate to the Walk for Lupus Now!  One day my team will find a cure!!!

 

4..... My team member and dear friend Lori made this amazing weighted blanket for me. 

 

It weighs 24 pounds!!!! i dont' know how she did, but it works so well!! my body feels like it could fall to pieces from pain at nights, I've been using this for a week, and I've been waking up rested because the second i drape it over me my body settles down, the pain is bearable, and i sleep!!

 

Which the most important thing to beat lupus is to be able to sleep!!!! Thank you so much Lori!!! I love my weighted blanket~!

GO TEAM KNAUP

 

 





Shot in the hip....

At my last appointment i recieved a shot of cortisone into my hip. I have bursitis which cause great pain...

The inflammation is very painful, i can't even lay on my sides because it hurts so bad...

The shot has been working ... Kind of .... I kind of think its causing more pain, because now everything else hurts... wonder if i can just have a full all over body shot.... ya think??

Any way i was wearing a low cut shirt the other day and i kept noticing i would have to remove quite a bit of hair off my chest... by the third removal i realized dang, my hair is falling out pretty good.  I put two and two together... my hair must be falling out as a side affect from the steroids... trust me i'd rather be bald then be in pain.  it doesn't bother me at all... i just found it interesting that my hair seems to reflect the state of my body...

Lupus Update

Today was my follow up with Dr. Shcuew... Let me just re-enterate that i absolutely adore this man.  He is the only doctor i've ever left his office smiling like a goober. 

My first labs showed inflammation markers for lupus but they were not "high enough" to be considered "true" lupus...so i had the diagnosis of cutaneous lupus aka discoid lupus. 

Right away he noticed the rash on my face has improved since my last appointment three months ago.

My Blood work still has inflammation, but it IS INDEED going down since my new medications. 

 My Urine, he was worried because he noticed i had inflammation from my kidneys and he did not want my kidneys to begin to start failing.  

 As of today... i quote "your urine was the cleanest, most clear urine I’ve ever seen in one of my female patients..." bam.... I told him I’ve been pushing the clear liquids like crazy since our last visit. 

Next was my test for my fibro pain management...which i was on the verge of tears with just the thought of the horrid pain from last time.  I sighed... and extended my arm.  I felt a jolt of pain but not enough to make me yell out and cry inconsolably... He looked up and smiled and said well how about that.... I just beamed at him! I said thank you doctor...for making me feel human.... i never knew it was possible.  He is modest and just smiled. 

 We talked about my rash, and since I’m still having bouts with it I may have to start prednisone which I’m not too keen on... but he said when my rash is out and visible...that’s when my joints are "achy" Discoid lupus patients ... have joint pain without the swelling. 

 We increased my Neurontin by 100mg i'll take 300 at bed time and 100 in the am.  To help with the burning cramping sensations in my legs. 

We talked about exercise he still doesn't want me to "overdo it yet" so no dancing, or excessive walking until we get my joints looking and feeling good as new.  However he was THRILLED i was swimming, and using sunscreen. 

 He said i was one of the FEW patients he has that he BELIEVES i will be IN REMISSION WITHIN TWO YEARS..... BECAUSE... I’ve done everything he has asked me to do.  Even adding a stretching session in the am, and pm.  Now if only i can go back to eating right again... i think i could beat this in just a year. 

He has total faith that i will one day be Healthy...and living again.  I have total confidence in his ability to help me. 
He did tell me that i have nerve damage from the Fibro, because it took so long for treatment.  However since my pain is being controlled i do not need to see a neurologist. 
I also had a steroid injection into my hip today.  Which did not hurt in the office... i mean besides the fact he was poking all those really tender spots that almost made me cry.... NOW... my ass is a little sore.... and my left hip hurts really bad now since i didn't realize i was in THAT MUCH pain with my right. 
Well gentle readers i'm off to bed, it has been such a blessed day...... thank you for all your thoughts and prayers.... it shows in my blood work.... i'm going to beat this ... "what doesn't kill me makes me stronger..." damn straight ya'll......

Meeting another Lupie

I had the chance this evening of meeting another incredible lupus patient Chris Reedy. From the moment i saw him, I knew he was just like me. It was like looking into a mirror...

Only another person with Lupus can truly understand "the Look" in someone else's eyes... its a mixture of pure defeat, exhaustion, with the slightest sliver of hope. 

My Heart immediately went out to him, because i know.  I know the pain...the insane exhaustion...the worry...the self loathing... but mostly he wore the expression of I'm done.  I don't know what else to do. 

He reminded me what i looked like a year ago.  A year ago i was walking the exact same agonizing steps... I'm so very blessed to have found the proper treatment.  It was a reminder that I need to keep moving forward.  I never want to go back to that feeling. 

We spoke four a few hours about our treatments, our doctors, our journey....the one thing we have in common is the loneliness.  It is so frustrating to look fine, but feel sick.  Every one around you tells you "well just do the dishes, you'll feel better," "just get out of bed, you'll feel better." If only it were that simple... If only it were so easy to jump and do what our minds want so badly to be doing... but its sincerely truly impossible for us.  If only it were so easy to find the right meds.  YOu know what i say to that...

IF ONLY THEY UNDERSTOOD....

I have been so blessed with such amazing Friends and family to be with me every step of my recovery... every day i needed help... i've had someone... Treating Lupus is pointless with out help.... And support... we need encouraged, and sometimes we need to just cry a bit... we need love...not tough love... our bodies are tough enough on us...don't add more. 

I started having flash backs listening to Chris tell me his journey.  I'm so happy our paths have crossed.  Because now, you are no longer alone.  That has been my mission since my diagnosis... helping other like me... know that you are not alone... and NEVER EVER EVER Give up... i promise you one day life will be worth living again...

I had two babies at home.  and i laid in bed and prayed that god would just take me... i couldn't do this pain any more... i've come so far from those dark days.  the more the pain leaves the more hope i have...

I hope i gave chris what he needed tonight... hope... a glimmer of hope that one day... it will get better... one day.... Tomorrow is always always always a new day...

A Lupie First

Over the holiday weekend i did something i've always REFUSED to do.  I had to ask for help. 

*GAH!*

I had to gulp down my pride and call my mom to come help me clean house.  I had got behind on the simple chores in life, you know laundry, dishes, bedrooms, you name it it was piled.  It resembled this picture.....

I had to fight with myself several times in attempting to dial her number.  I had a full house expected to my house since it was a very warm weekend and our pool lured in many family members.  I drank a few cups of coffee thinking maybe that will give me some much needed energy.  The temperature in the house started to rise, which makes a lupus patient even more tired then they already are... I pushed myself to keep going and said i'll call my mom if i have to... i made every excuse why i shouldn't.

A few loads of laundry later, and a sink full of dishes and a whole house left to do in a less then a few hours... i knew i had to call. Inhaling deeply i just hoped my mom wouldn't bomb bard me with thousands of questions about Why...

*ring*

*ring*

"Yes?"

"mom, *huge sigh* can you come help me clean my house"

*silence*

i hear the shock and dismay in my mom's voice...

"huh"

inwardly i groan... "can you come, over, and help clean my house?"

"let me get dressed'

HUGE RELIEF FLOODS ME!! No questions asked she already knows, i don't have the energy today... a few moments later my mom comes waltzing in .....

Yup, that pretty well describes her facial expression... she didn't gripe at me once for the condition of my dirty messy piled up laundered house.  In fact she was quite cheery.  She helped me get caught up with nine loads of laundry and helped sweep and mop my floors.  It wasn't as bad as i thought it would be.  When the house was presentable i told her thank you.  She said, "Alisa, Everyone needs help sometimes...."

That they do.  My house is still quite a disarray...but it does not have 9 loads of laundry piled on the floor. 

Thanks mom. <3

Hell to the NO more!

Well gentle readers, i couldn't handle the new medicine Cymbalta any more.  It took to much of a toll on my body.  I could handle the nausea and the migraines... but the not sleeping for three days was far far too much. 


When i began taking the plaquenil a year ago, i spent three weeks puking my guts up because of it.  Eventually the nausea went away.   The nausea had began to go away, and the headache lightening, but i laid awake for three days... and became very snippy.


Since stopping I've been sleeping again, i am back on my Prozac, i feel much much better.  I'm sleeping at night and not puking :)


The weather has kind of taken a toll on my with the atmospheric pressures going up and down... I'm thankful we have had the constant pressure here lately. Its been nice on my body!


Something happened to me the other day that made want to write about the incident.  Someone came up to me and say "Alisa I'm so sorry to hear that you have this horrible disease."  It took me by surprise because in her voice she made it sound like i was dying.  I told her there is nothing to be sorry about!  she replied, "how can you say that! i feel so bad you have this!"

I stood and looked at her for a few minutes, I don't feel like i am a victim.  I don't feel like I'm being punished.  In fact i feel kind of happy that God saw fit for me to have this disease.  No I'm not happy about being miserable, but i am happy because on this journey I've me some pretty UH-MAZING! people that i would not have met other wise.  I don't know how I've lived my whole life not knowing them!

I was mad that it took so long for a diagnosis.  I have no one else to blame but myself for the time it took... i let one person make me feel bad about myself...instead of talking about it and being honest with people i hid it.  When you hide something its no one Else's fault but your own.