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.