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Dec 5, 2014

Systemic lupus Q&A

Hello everyone! Over the last year I have collected any questions from people through real life conversations and online. Most of these were taken from my tumblr but some are just things that I am commonly asked. I hope you learn a lot ^.^

What type of lupus do I have and when was I diagnosed? 
I was diagnosed with Systemic Lupus and Sjögren's Syndrome in October of 2013. Was diagnosed with Rheumatoid Arthritis in 2015.

What is Sjögren's syndrome? It's a systemic Disease similar to lupus and it comonly accompanies other rheumatic diseases such as lupus or rheumatoid arthritis. It is known to cause dry eyes but it affects much more than that. Arthritis, tendonitis, muscle pain, kidney disease, vision problems, seizures, lung problems... I would like to raise more awareness about this.

Is lupus fatal/life threatening? It can be. It depends on a lot of things. The treatment, taking care of ourselves, keeping appointments, getting regular check ups, eating right. And also, how far the disease had progressed. Other than my connective tissues, my lupus has attacked my brain and kidneys. But I take my treatment plan very seriously and do as my doctor orders. This used to be as deadly as HIV when it was first discovered.. Giving patients 5 years to live. But Most people live a very long time these days thanks to prednisone and other medications.

Has prednisone made me gain a lot of weight? No, but it had helped me stop losing so much and helped me maintain a better appetite. If you are on anti-rheumatic drugs, like I, you may have trouble keeping things down and getting hungry. Prednisone may help you eat more. If you are concerned about gaining weight, a little self control with food will go a long way. It doesn't just make you gain weight out of thin air, it makes you hungry and giving Into the hunger is what makes people put on the weight. Prednisone may also may you retain fluids but after the dose is titrated down you may see these symptoms subside.

What made you seek a diagnosis? 
I ended up in the hospital with swelling to my kidney and spleen one too many times. They thought I had Mononucleosis and strep. When tests came back negative, my new doctor and I were going over my history and she said it sounded like lupus and then sure enough, it was.

Has it been hard to be a nurse with lupus? It's had its fair share of ups and downs. I literally have to push myself sometimes. But if you ever need a nurse who understands daily pain and chronic illness, and has true empathy, and won't give up on getting you better, I'm your girl.. I know all about that :P

Has lupus affected your relationship at all? It's had its moments. I have had seizures and embarrassing things happen that I wish my bf didn't have to see.. But the fact that he's still by my side is what really matters. If you want to be in a relationship you have to accept the limitations of the illness. Sometimes you can't stay out all night. Sometimes you get sick on important dates. And people are going to lose sleep and worry about you when you're in the hospital. But as long as you have someone supportive and you are a support to them, it's do-able, and it can be amazing <333

What's the difference between lupus and fibromyalgia. Although a lot of people with lupus also have fibro caused by the lupus, they are two different things. Not everyone with fibro has lupus. Fibro, to my understanding, is a chronic pain disorder caused by the miscommunication and misfiring of pain neurons, and pain receptors. I believe it may be more neuro-related. Lupus also causes chronic pain but it is autoimmune. The pain is due to the destruction of healthy joints and tissues because the immune system goes crazy and attacks ones own body and healthy cells. (Auto=self). So basically somewhere down the line my immune system was like "I'm confused" ... And then my body attacked itself, causing chronic inflammation and pain. Sad story. *tear*

Are neuro manifestations common with lupus? Common enough to be in the diagnostic criteria for it, but other symptoms previously mentioned are more common.
This is why they call this disease "the great imitator" because it can attack anything, anywhere in the body, and be
Mistaken for so many other things. 

Has this disease made your life unmanageable at any point?
Yes at times I could not work. There were times my classmate in nursing school had to rush me to the ER. I get scared. But I still manage. It's just not super easy all the time.

Well that's it for now guys :) Its been real!! 

Jan 11, 2014

To a power greater than myself

I wrote a letter today. I put it in the box that I keep letters to Aunt Sue. This one wasn't specifically for her, it was to any kind of power greater than myself...

"Please guide me, help me to overcome my weaknesses. Help me become better, greater, stronger, and wiser. Help me love and treat others the best that I can, and please help me show the same greatness, the same kindness, to myself."

Dec 2, 2013


Choosing to be racist in this day and age is old news. It's like choosing to sh*t outside when you have indoor plumbing.

HEY! Why use a toilet when you can do it old school and sh*t in a hole in your backyard? By choice!?
Yeah, it's a way of the past, and so it makes no sense to do that now.

It's the same thing with a racist mindset. You are living in the past, for what reason? Choosing to view the world with closed eyes, a closed mind, and a cold heart.. how is that beneficial to anyone? Including yourself?

There's no intelligent reasoning behind racism. It's straight up ignorant.

The way I see it, being racist is being lazy. It's the lack of motivation and will power to open up your mind. I don't care if you grew up with racist parents. I don't care if your whole town is racist. Grow up, be stronger than that, and choose to think like an individual. If they all jumped off a bridge would you? If you say yes then you're probably better off.

Check out the video below for the latest shenanigan. I think it's safe to say that ignorance and racism is still very much a part of this world today, and it's quite disheartening. But at least more and more people are seeing it for what it really is, pathetic and wrong.

Anyway, that's just my two cents.

What did one racist say to the other?

Nov 22, 2013

The poem without a name...?

So uh, this one doesn't have a title. I don't think I should give it one until I think of a good one. It's one of those poems that has a lot of meaning, and that's why you'll probably read it and be all like, 
But I dig it, you know, cause I wrote it, so I get it, and stuff.

There and back,
Up and down
The radiance 
Is burning out

Don't let them down 
Stay with them now

But that glimmer I've got
It's fading out

Time takes me away
Every now and then
But I don't have to go
I don't have to go just yet

Try to hold
Onto this hope
It's everything
That's what I'm told

Don't let them down
Stay with them now
But that vibe I had
It's burning out

And it takes me away
Every now and then

And I never know 
When I'll be back again
But I cannot come home 
Not just yet

There and back
Up and down

-K. Lynne

Oct 25, 2013

The Bright Side of Life with Illness

This blog is dedicated to all my online friends who have Systemic Lupus, Sjogren's Syndrome, RA, chronic pain, and other life long illness.

Some of you I met through facebook, and some of you I met in a support group online.

I want you all to know how much I appreciate you, and how much you've helped me stay positive.

You've showed me - That living with autoimmune disease and chronic illness doesn't have to be the end of the world WITH DEADLY LIGHTENING BOLTS STRIKING THE GROUND WHILE ZOMBIES VICIOUSLY ATTACK LIKE A STAMPEDE OF WILD ANIMALS!

I've learned that living with chronic illness doesn't have to be so bad. We have the illness, but the illness is not who we are.

Positive things I've grown to learn:

-If I never got sick, I would have never changed my diet to organic, gluten free, and cut out refined sugars. I'm gonna be so healthy and full of energy once this bad flare up is over and treatment kicks in!

-If I was never sick or diagnosed, I would have never understood first-hand when patient's deal with chronic pain and fear of continuously complaining about it. After a little while, doctors stopped listening to me, and I stopped talking about my pain cause I started to think it was in my head.. That is, until I sustained about the 10th joint injury from work and also happened to change health insurance. New insurance meant new docs, and lucky for me that meant better docs. I mentioned frequent joint/muscles pains that often made it a struggle to get out of bed, that it was only getting worse, and being so injury prone at work, more so than ever. I was a new patient and it was just a routine visit. When I spoke up to the right people I finally got answers, which lead me to get treatment. It's tough because I am still stuck in the awful flare up and getting adjusted to my meds, and the only thing that will work fast is large doses of steroids, which I refuse, but it will be over soon enough. And, going through this will help me care for patients with chronic pain and encourage them to keep seeking answers.

-Living with chronic illness or any type of struggle, makes you a stronger person! That goes to everyone, no matter how "well" you think you deal with it! We all have our moments, but what matters is picking yourself up and realizing you are stronger than your disease!

Those are just a few things I have learned, which help me see the bright side.

I hope this can help some people as much as they've helped me. :)

Oct 10, 2013

The journey of a thousand miles begins with a single step.

I've been reading a lot on meditation and inner peace. And looking back over the past few years, I've made so many changes, without even realizing what I was doing at the time.

Educating myself on this stuff has brought all of this to the surface and I am able to see clearly now. It's obvious - all this time, I was simply searching for peace.

I grew up with a lot of chaos in my life, mostly things out of my control. And without even knowing it, I got used to it. I became so familiar with negative people and destructive behaviors, that I became comfortable with it, I hung around it, I let it in.
I welcomed it.

It's been different for a while now. Over the last several years I got to know myself better, recognized that changes needed to be made, and pulled away from most negative people and negative situations, and began my search for peace, and stability. 

I realized I had to turn a blind eye to the negativity and open up my eyes to the good things, and continue to grow.

              OH LOOK! A PICTURE!

I also learned that being kind to people in my life is a MUST - Whether they are or aren't kind to me. Sometimes an act of kindness to unkind people is to simply walk away from them, and not feed into their faults. And no matter who appreciates the things I do, or who doesn't, I realized a long time ago that I do not give to others to get things in return. I do it because giving is what I love doing.

Another life lesson:
Life is very fast paced. Sometimes it seems impossible to "take it one step at a time" because we are all, "on the go" so very often.

A good traveler has no fixed plans and is not intent on arriving.

Success doesn't mean rushing. We live in a very fast paced culture, and it makes my head spin sometimes.

It's all good..

Take some deep breaths, and just remember to slow down sometimes.

The world is not gonna stop spinning for anyone, and that's why I have to create my own pace.

Just a little encouragement for others - No matter what you are trying to accomplish, or who you are trying to become, focus more on where you are, than where you have been, or where you are going. It all begins with one single step!

Oct 6, 2013

Hold Your Own Hand

When you feel bad energy around you,
Like magnetic waves about to pull you in,
Don't try to run,
Don't let it take you,
Just stand there, strong, and breathe
Good energy will come to you

When you feel your heart is broken,
Black and blue, torn and bruised
Don't be so quick, don't fix it so fast
Don't distract yourself from the pain
Just let it be, and let yourself feel
Let it be and let it heal

When you feel you have grown weak,
Like the strength you had was beaten from you
Don't push yourself
Don't put yourself down
Just take some time, think it through
And you will find your strength again

When you wanna push all the love away
When you wanna let yourself fall
When you wanna dig your wounds deeper
When you wanna hide your beauty
And deny your own strengths
Don't sabotage yourself
Don't succumb to it all

Just let it be, it will always work out
But you must think positive
You must remain strong
You must give yourself time
And you MUST take care of yourself

May we all just have a day,
One day without pain

Sep 13, 2013

The random things about Kerry Lynne

Study break!

Random facts about me 
and my thoughts:

Fact #1:

I have an astigmatism in both eyes, and my ophthalmologist (eye doctor)told me I am "half color blind" cause certain colors look the same with one eye. He also told me it's only the second time he's seen that in his whole career.

I love animals. You knew I was gonna say that. Shut up. Yes you did.

Every time I'm around a golden retriever my ADHD is amplified.

This quote makes me feel at ease: 
“I usually don’t like thinking about the future. I mean let’s face it, you can’t predict what’s going to happen.But sometimes, the thing you didn’t expect is what you really wanted after all. Maybe the best thing to do is stop trying to figure out where you’re going and just enjoy where you’re at.” 
-JD, Scrubs

It's hard for me to pick a favorite music artist or band because I love so many, but if I had to, I'd say Incubus. Their sound, their style, their lyrics, the performances, I love everything.

I think music has continued to become less and less versatile. You hear the same types of music on any popular station and even the not so popular stations are doing it now to get bigger. Same with television in relation to music. And MTV?  Do they still even play music?! With the exception of a few music artists today, I've learned to appreciate most of the mainstream for what it is: Entertaining, but superficial.

I think trends are not just a product of society but the media and government have powerful influences. 

Swear, I'm not one of those paranoid conspiracy nerds. But my mind and eyes are very open.

As society and the industries become less and less versatile, it's easier for large audiences to be targeted. I feel negatively about this, and that most people need to learn to be more individualistic.  

If you put a funny picture in front of my face and start making weird noises and dialogue, I'll crack up laughing and there's no telling when I'll stop.

Hi my name is kErrY LyNnE and I'm 5!!!

If there's one thing that I have a hard time controlling, it's my humor. But it's still my best weapon IN THE WAR AGAINST REALITY I've been told I'm immature.

You stop that, I'm fantabulous.

My laugh is contagious.

JK no I don't.

My childhood hamster had huge balls.

So did the hermit crab.

...Wait what?!

A lot of my neighbors have been alcoholics and sex addicts. Really great combination for noise control...

I've written letters to my neighbors to tell them to have quieter "relations"
Haha, stop f*cking.

I think the reason things get so chaotic when there's a full moon is because the magnetic waves of the moon cause minor fluid and chemical changes in our bodies, and mildly affects the electrical impulses in our cells and brain. I researched this when learning about the moon's affect on the ocean.

Well I gotta get back to studying. Another fun fact: I study 95% of the day and never sleep.

So, Bye. 

Sep 6, 2013


I feel everything
        All the silence is pulling me in
The gravity catches me 
As I struggle to swim
Right here, so captious and blue
I'd rather swim to you
That's all I'm trying to do
Where the elation gives me inspiration
And tranquility paints the skies
A different shade of blue

Sep 3, 2013

I promise

I will bring you light, even when I'm in the darkest place. Even when I don't feel strong, I'll lift you up. Even when I can no longer feel the ground beneath me, I'll walk to you and be by your side. I promise you I'll be there with you, even when I cannot find myself.