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. 

Dentist and Sjorgens!

Well hello gentle readers!

Today i went to the dentist.  I was nervous because i haven't been since i was 17, and i am now 25.  I know right....

I've been afraid i might have finally came down with a *gasp* cavity.  The dentist came in and we talked a little bit about teeth.  (obviously) then he said say ahh...

He poked around for a second... and asked may i ask about your personal medical history.  I said sure what would you like to know...

"I couldn't help but notice your purse with the top team lupus walk button on it.  Do you have Lupus?" 

"Why yes i do.  I have discoid lupus".. and i waited for the oh ya uhhh huh...

"That's what i thought, i assume you are under the care of an RA doctor."

"yes."

"Has he discussed with you sjogren's Syndrome?" 

(i'm in a little shock that this dentist even had a clue, about this disease)

"briefly but we are working on the bigger issues at hand..."

"Well i can tell you you have this disease, i say this because since you already have a diagnosis of Lupus, and you have a severely cracked tongue...along with a few other things  typically seen in sjorgens syndrome, but i will get more involved with your treatment for this at your next appointment."
"my father has lupus... its a cause close to my heart."

(I'm still in just utter disbelief.)

I then finally find the words to ask how his father is doing, and send him my get well wishes.  I was in disbelief that I've now found not one BUT THREE doctors in my area who are sensitive to a lupus patients needs... I knew right then, that this was the dentist for me.

We then discussed some of the medications i was on, which can apparently be pretty rough on the teeth, and mouth. 

I was diagnosed with a tiny tiny cavity... i was so sad.... he told me since i struggle with dry mouth (sjorgens syndrome) i'm not producing enough salivia to help keep my teeth healthy. 

I did get a pat on the shoulder however for the condition of my teeth! He said my gums were perfectly healthy, and i only had a slight tarter build up that can be easily cleaned the next time we come in.  the cavity is not so bad, he can reverse it with a special cream.  we caught it just in time!

Now you may be wondering what is Sjogren's Syndrome!!

Definition

By Mayo Clinic staff Sjogren's (SHOW-grins) syndrome is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth.
Sjogren's syndrome often accompanies other immune-system disorders, such as rheumatoid arthritis and lupus. In Sjogren's syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased production of tears and saliva.
Although you can develop Sjogren's syndrome at any age, most people are older than 40 at the time of diagnosis. The condition is much more common in women. Treatment focuses on relieving symptoms, which often subside with time.

Side effects vrs out come

I wasnt sure how to post this blog, i'm a visual person... so i picked out a  bunch of pictures to sum up what i've been through the past few weeks of adjusting to new medications, and with drawls from previous medications that have now been discontinued.

I'm so tired!!!!

Insomnia... really? a side effect?? i'm sooooo tired???

I really can't describe what its like going through each one of these symptoms.  If you have ever been through drug withdrawl you will know exactly what i mean.... one day your body feels great... the next you wonder if these horrible pills are worth it.  it takes months to get leveled out again. ... meanwhile you suffer from.....

Mental slowness... haha yes, really... its not just
 how i normally am!

My vision the past few weeks.

It can be quite frustrating.  I was taken off of two narcotics, an anti depressent, and a few odd and end other things.... Medications i've been on for over two years.  Let me tell ya, i've felt like i've been hit by a truck... i've turned into a hermit, who loves the dark and peace and quiet, and food makes me ill...


Through all these side effects...sadly... i still feel better then i did before these new medications... i know it will take a while to see the light, my migraine has ended after a two week stay in my head!  The nausea still evident, and many other symptoms.... but i do feel they are lightening up... and i will reap the benifits before long.  I can't let the side effects scare me from my cure!! I am so thankful that THESE are the ONLY side effects i have to endure...

Blood work Update!

Dr. Schue's office called today with results of the 15 labs they ordered on me.

My lupus markers again came back negative. Which i'm pretty happy about. However he is keeping my diagnosis the same Cantaneous Lupus, because i have all of the physical symptoms. So i'm going to continue to keep taking my plaquenil to keep the ulcers, and rashes under control for now.

He did notice that i had a few abnormalities in some other blood work that caused him a little concern so he asked i come back in, in a month to repeat the labs. No big deal, and he will see me in June to discuss his findings in my blood work. He really is a great doctor. His staff is so nice.

Since i'm a visual person i want to SHOW you the difference in treatment with the doctors.

This is a picture of the meds i was taking to try to gain some relief....

Sadly all these meds were not coming close in helping me control any of the pain.

This picture is what i'm currently taking. I'm finding a lot of relief......

Fibro Flares

Did you know that Fibromyalgia suffers can predict the weather better then weather barometer...we are known as Human Barometers... because our bodies are THAT sensitive to the changes in pressure in the atmosphere.

As you see in the above image, as the pressure in the atmosphere goes up, the water rises in the goose's neck (like before a wicked storm) you can say... the level of pain in our bodies GOES WAY UP! imagine those already inflamed nerves in your body.... and adding pressure to all those pressure points....

That is just a tiny graph... of SOME of the points the pressure triggers... and pain can be almost debilitating.

I was diagnosed with Rheumatoid RA, through a positive blood test, it showed some inflammation in my joints.... But the anti inflammatory drugs didn't seem to help. Because the drugs, weren't fixing or even coming close to where the problem of my issues were... in my nerves.

I got pretty depressed with my first flare... here for a week i felt great!! wonderful!! then the evil mid west storms came in... the front moved in... I knew something wasn't right when i woke up... in the middle of the night with night sweats. I knew my body was getting geared for something... In the morning, i woke up tired, and stiff.... which was something i hadn't felt for a while... by after noon ... i was laying in bed... my body fighting so hard to keep it together and loosing it. Depression creeped in... and sleep.... sleep would have been nice...but having two babies...its not going to happen. Sunday... i woke up, i felt jet lagged but better... my legs weren't throbbing at least... however my head was.... another bad thing about fibromyalgia is the headaches after a horrible flare. Its like the last place fibro goes just to get one last kick in while your down... i felt great towards the after noon.... but now as evening sets, so does a new front for more bad weather... i feel it in my body all my pressure points for fibro are literally swollen... i'd never noticed this until i had got the inflammation down.

In fact there are many things i never noticed until now. i've over come a few dizzy spells.... where i've felt just like this poor kitty cat!!

Things will get better... I've a new grasp on WHAT THIS IS.... and doctor who KNOWS WHAT THIS IS! i feel by keeping a journal for my doctor he will know how to perscribe my medication for me to get the most out of it.... DOWN BUT NOT OUT!!!

Week One

Of new meds...

Gabepentin...aka Neurontin http://http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0014677/ please see link if you would like more information on the drug.

Things i've noticed
1. Instant pain relief...
2. weight loss
3. social anxiety
4. AMAZING SLEEP!!!!
5. Dizziness

Overall, i feel great. I'm off of about half of my medications because of the new med... which that alone makes me feel excellent!!

I wake up in the morning ready to go. Before i woke up so tired, because i had either been up tossing and turning all night, or crying. Now i simply lay my head on my pillow and gently fall into amazing deep sleep...the kind of sleep i drool all over my pillow and wake up refreshed!

I am a little bit of a zombie during the day but i can deal with that its not a bad feeling. I don't feel like i'm in a dense lupus fog.

I'm feeling so good, i've invited friends over for supper. which is a rare rare thing for me to do. because by the time i fix supper, i'm usually too tired to enjoy the conversation and company of friends. i'm still tired at the end of the day..but the best part about the end of the day...i don't fear it... i know i'm not going to be withering in pain from the things i did during the day......its a great feeling... this living thing...

This doctor is going to help my body heal... i'm going to put this in remission.

Cutaneous Lupus

Well i've had some time to rest, and think about my appointment and the look on my face is still....

I've been staring at the place on my arm where the doctor touched as if its contaminated. All these ah-ha moments come flashing to me....

1. why i almost passed out when i had to have an IV in that part of my arm, and i STILL TO THIS DAY CAN FEEL WHERE THEY PUT THAT DAMN NEEDLE and that was 2.5 years ago....

2. Why carrying things is sometimes more difficult.... flash back to TOYS R US days when i had to carry boxes... when i worked at the nursing home and had to lift patients by my arms, why i would get an instant headache....

3. carrying my kids not only hurts my hips but after a prolonged time i get headaches, and pain...

where that bottom arrow is .... that's about the spot my doctor pressed. I almost want to buy arm guards now haha!

The type of lupus he diagnoses me with is cutaneous Lupus... I do not yet have Systemic Lupus... which i feel is the worst diagnosis to get...

Systemic lupus erythematosus (SLE) is an autoimmune disease, which means the body's immune system mistakenly attacks healthy tissue. This leads to long-term (chronic) inflammation.

In order for me to be diagnoses with SLE i have to have a POSTIVE ANA blood test. Wich i have not had one. However, i do show signs of inflammation in other tests... 10% of cutaneous Lupus patients will develop SLE so i will have to go in every couple of months to test the inflammation in my blood.

For now my Kidney's are in the care of Dr. Polkit Patel. We are still trying to determine why i get kidney infections so easily... Since seeing him.... I've yet to have one... wierd..... However Dr. Schue did order a urinalis to test for protien and blood in my urine... because i do not want to develop Lupus Nephritis... which is where the kidneys are attacked by lupus...

Dedicated to TEAM KNAUP

This blog is dedicated to my team mates.... the ones who have supported me encouraged me....and at times even held my hand through this long...long...journey.....

Today i was not as nervous as i normally am... i was actually calm... after meeting my amazing urologist...and my ob Doctor recently IBM now aware that there really are amazing doctors out there who want to make us feel good. I now have the confidence to say I'm sorry you aren't the right doctor for me... to not settle for a six month waiting period...

I tend to judge a doctor by their staff... its the first impression i have of the doctor... today... the nurse said i see you are here as a Lupus referral patient.. I'm sorry to hear that.... How are you feeling today? she said this with sincerity... and us lupies...we know this phrase... its the one true phrase that makes us know...a person cares...someone who understands our up days and down days.... I instantly knew this was my time....

She didn't ask me the same ol' why are you here... what's going on routine... she already knew... She took my vitals, and we had a nice chat about family history... and she told me... Please don't judge Dr. Scheu with his appearance... he looks very young for his age but i promise he will fix you... I thought how could i have any room to judge how someone looks... I'm 25 but feel 99.

In walks a small built attractive baby faced Dr. Jeremy Schue.

with in two minutes of talking to me he said you have The most typical form of Chronic cutaneous lupus (meaning)

(discoid lupus) appears as
disk-shaped, round lesions. The sores usually appear on your scalp and face, but
sometimes they will occur on other parts of your body as well. Approximately 10
percent of people with discoid lupus later develop systemic lupus, but these
people probably had systemic lupus to begin with, with the skin rash as the
first symptom.

He also said that i have Trochanteric bursitis

which looks to him like this

but to me feels like this....

I also have inflammation in the linning of my chest wall that causes severe pain with each breath i take...however that is being controled with medication...

Then came the test that made me cry....

I knew i had fibromyalgia... however My previous doctor didn't feel the need to treat it. As dr. Schue was moving my joints he decided to press a spot on my forearm that made me scream out in pain! I couldn't even focus because the pain was so severe... i was sweating...and went instantly hot/cold... horrible... He said i had a severe case of fibromyalgia... which is a disease where my brain transmits pain differently. Its over sensitive. Because other parts of my body are in too much pain. He felt very sorry that he had to put me in so much pain, he gave me all his kleenex's. i was positively stunned that a simple touch of his thumb could almost paralyze me...

Tonight i am bruised where he pressed each point... and have an awful headache.

I also found out some more intersting things... i'm sorry folks i'll have to continue later, i'm positively wiped out.... but know... he has a new medication for me, one that he hopes will make me feel human again... i had 15 different blood tests today...chest xray.... and urine... i have a follow up in two months... he said that's how often i will have to come see him to watch my inflammations... also i will be starting steroid injections for my hip! he said i'm going to be human again!!! folks... that's just plum amazing....

Thank you Beverly Knaup....Thank you.... Dr. Jeremy Schue... and thank you for each one of you who take the time to read..and follow up on me... and send your amazing thoughts and prayers.... i appreciate them... so very...much.

Just a quick little update

My body obviously hates this weather... so i'm not going to bore you with the obvious...

I am seeing a urologist in a couple of weeks. Hopefully we can figure what is going on with my kidneys...and why the refuse to stop getting infected...even after ten days of antibiotics...which make me want to vommit...

Other wise can't really complain :) going to be trying a new medication for my aches and pains hoping it works better then most... thank god for insurance!!