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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

What is Sjögren's syndrome? It's a systemic Disease similar to lupus and it cmonly 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 chemo, 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. 

What made you seek a diagnosis? 
I ended up in the hospital with swelling and acute renal failure one too many times. 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 each time I go to work. I have gotten injured around my joints. The fatigue is not fun either. 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 dat :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 nuerons, 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 "you know what?! Screw you kerry!" ... 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. There is something called lupus psychosis.  I started
Having seizures and
Losing touch with reality a few times before I was
Diagnosed, which had
Gotten better with treatment for lupus. But before I was diagnosed with lupus they had
Misdiagnosed me with neuro and psych disorders. I was home alone and my eyes started playin tricks on me.. Which lead
To me screaming and crying, which lead to me
Calling the police cause I thought I wasn't alone.. Which lead to a psych consult and me thinking I went crazy lol.
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 driving because I'm afraid I'm gonna get sick in the car or black out. I get scared and anxious when I think of how this diseases made
Me go nuts. But I still manage. It's just not super easy all the time (but who's life really is easy? Lol) 

Do you plan to have children? I would like to have my own but I am also fine with adoption if I can't. 

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

Aug 11, 2014

What is love?

I believe that in order to be happy with someone else you need to find yourself and be happy with that person first.

I met my boyfriend 4 years ago. Although I always thought he was a catch, I hadn't "found myself" yet at that point, and something in my gut told me that he's the type of guy I could be really serious with. My stepmom already knew him and spoke highly of him.. And when I met him I could tell that he is a really good guy. Not only that but very attractive :)
...But I knew I wasn't ready.  :/

I continued to work on myself for two years after that, and then my aunt, who was like a second mother to me, suddenly passed away. I was there through everything. I found her in a coma on a Wednesday morning, and I held her hand on Thursday afternoon as she was taken off of life support. I watched someone I loved so deeply, just slip away.
It was at that point that I realized how short life is, and it also gave me another perspective on love.
When you love people, you should treat them as if you could lose them at any time. Sad, but true.

After she passed I did find myself feeling guilty for things I said and did to her, like bumping heads before I had my coffee and things like that. But I had to forgive myself. She wouldn't want me to focus on the negative.

I also learned that time should not be wasted on letting anyone hurt you. Time should be spent mostly on those who treat you well.

If there is one thing I truly regret, it's not spending enough time with my Aunt. In fact I used to spend more time on people who didn't love me, and didn't treat me well. And when she passed I wished that time was spent on her.
We lived together and saw each other every day but I wish I could sit with her one more time, watch one more episode of Seinfeld or even have one more stupid argument before I have my coffee.
Sometimes you don't realize how much you love being around someone, until you lose them.

So, I learned to not take good people for granted.

6 months after she passed, that awesome guy from years ago, who is now my current boyfriend, asked me out for coffee, which turned into a bunch of dates. And that lead to him asking me to be his girlfriend, which resulted in me being extremely happy and in love to this day. :)

This time, I knew I was ready. I was still a little vulnerable from having lost my Aunt, but I trusted that he wouldn't hurt me. And he hasn't.. He did the complete opposite.
He has taught me that being strong doesn't mean just going through things alone, but knowing who you can trust to help you.

He became my best friend, someone that I could always talk to when I was sad but also someone who I could be extremely happy with.

He brought out a brighter side of me. And that's what love should do. No relationship is perfect, no human being is perfect, but for the most part, you should be content and happy when you're with someone.

So what is love?

Something I had to learn about, and be ready for. Something that I learned to have for myself. Something that brings out the best in people. Something that should not be taken for granted.

And most importantly,
A strong love stays with you,
Even after the person is gone.
[[ Rest in Paradise Aunt Sue,
Love you always. ]] </3

Jun 2, 2014

I am not my illness

It's hard.
those of you with chronic illness know it all too well. You get stuck inside your head, and your body takes over your mind. You start to feel like a "weak person" instead of a strong person with an illness. And you start to want to "give up the fight" and just let it all take over.

If you know this feeling all too well, please keep reading.

There are different psychological stages of illness. When I was first diagnosed, I was in denial. I thought that this was just a phase that I could reverse. I thought that diet and healthy lifestyle could make it all go away. I didn't listen when my doctor gave me a note to give to my boss, to take me out of work. Or when he gave me a prescription for some heavy-duty meds to help me. I threw it all away and barely told anyone about the illness for 2 months. 

Then I ended up in the hospital. Still, I refused to take the medications or stop working. It didn't occur to me that I was "sick" because I was STILL in denial.

I shouldn't have been doing certain things by myself but I refused to ask for help when I needed it. I would do house work and clean by myself, and then lay in bed for hours instead of cooking or eating. I sacrificed certain tasks for other tasks. If I wanted to do the dishes, I had to put off cleaning my car til the next day. I did this for a while until I lost the ability to do most things at all.

People became concerned because I was losing weight, getting confused, sores all over me, I was pale, my house and car were complete messes, and I was just not acting like myself. Rumors started that I had an eating disorder. And truth is, I was border-lining one. I wasn't anorexic, but I had sworn off all food that wasn't organic and gluten free, and sometimes I would even throw food away if it touched another food that wasn't "healthy" to me. I didn't realize how warped my mentality became until a friend put a piece of her chicken on my plate of fruit, and I freaked out, and threw the plate away because it was "contaminated." She got really upset and had a talk with me, and I started to realize something was wrong with me.

One person even asked me if I had been checked for breast cancer and things like that, because of how sick I was started to look. It was during this time that I started to be honest with others about my illness because I didn't want people thinking I had cancer or anorexia. 

I finally started to realize that I was ill, not only physically, but I was becoming mentally ill, but I still was not accepting any of it. I was convinced that if I was "really sick" that I must be responsible for for it, so I continued to eat a certain way and change my lifestyle to "reverse" the illness. I ended up in the hospital a handful more times, and then one of my doctors said, "if you don't listen to me, you're going to die."

Funny thing is, at that point, I wanted to. I never felt good anymore and my mental health was deteriorating because of my physical illness and my inability to accept it and do what I had to do. But I thought of my loved ones. My family, my boyfriend, my friends. I couldn't let myself just die and leave them to wonder why I didn't fight harder, why I didn't do it for them, if not for me. So, I did it for them. I took my meds and I let my doctor take me out of work. But I stayed in school and I got through it. 

I then entered the "sick role" and started to let people help me. I accepted the fact that I could no longer do certain things for myself. And it was one of the hardest transitions of my life! I am independent and love to help others.. I do not like being the patient. I felt inadequate and dependent, and weak.

But over the next 6 months I noticed myself transitioning, from a "sick" person, to a person who fought so hard to get better. The recovery phase. And that was the greatest transition I have ever experienced in my life. I listened to my doctors and I did what I had to do and eventually I was able to go back to work and I became more independent again. It is still a constant battle, because my medications have nasty side effects, and I am not in remission yet. I still wake up in pain and I still sometimes wish I didn't wake up at all. I still have trouble eating and maintaining my weight. I still have days where I want to flush all my meds down the toilet, or throw them out the car window when I have to pull over from the nausea. But in years to come, this may all just be a thing of the past.

Because I accepted the fact that I was sick, I was able to get better.

I see a lot of people go through these phases and get stuck in some of them. Whereas I was stuck in denial, others can get stuck in the "sick phase" and they hold themselves back from getting better. They get used to being dependent on others and their disease becomes a crutch. I never went through that myself but I know people who have, and it's not a way to live.

I understand that there are illnesses that make people dependent for the rest of their lives. It is important for people with these illnesses to maintain whatever independence they still have, but not feel guilty or inadequate for the things they can no longer to for themselves. 

Whatever phase you are in, whatever illness you have.. just remember.. YOU ARE NOT YOUR ILLNESS. You HAVE an illness. 

Sometimes I lose sight of the positive and courageous person I have become, when I focus on the fact that I physically feel weak, and sick, and tired a lot of times. My body is so exhausted right now, from the disease, and the meds I'm taking to fight it. This has been a battle for quite some time now. I am better but when I have my bad days, they are pretty horrid. But the trick is to keep my mind strong, and not lose sight of who I am. Because I am not my illness. 

Jan 12, 2014

You know you have an anger problem when...


You like being alone because most people piss you off.

You have been called "butt hurt" by a younger sibling or your acquaintances, quite frequently.

Your social networking sites are full of personal dilemmas that annoy/anger/target other people.

If people are hiding your posts in their news feeds, which you wouldn't really know about because everyone would just deny it to avoid confrontation. Skip this one.

If you have gotten out of a car to confront a shitty driver who cut you off.

If you have followed people who cut you off.

If you frequently argue in the car with people.

If people jump out of moving cars to get away from you.

If people generally just avoid you in every single way possible.

If you have assaulted another human being.

If you have assaulted another human being at a children's birthday party.

If that person was a clown it doesn't count. I hate clowns.

If you spend most of your time yelling.

If you spend most of your time trolling the internet.

If you answered yes to most of these things...

If you can relate to majority of this you may have an anger problem. My advice is to remove the stick, which has been plugging up your ass. You may be a bit backed up. But don't worry, there is help out there for you! 

Just kidding, you're screwed.


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 31, 2013

2013 - 2014 / A New Path

So once upon a time,
it was January 1, 2013. 

I distinctly remember, sitting on my couch quietly, wondering, what will this year bring? I had just lost Aunt Sue, 3 months before this. But I had this feeling, that no matter what happened next, I'd survive it. 

I decided that day, as long as I'm alive, I'm going to live

I've accepted that I'm going to feel loss, and pain. Sometimes feeling pain is what makes us alive. Lets us know that our hearts are still beating, that we have things to lose, things to live for...

 Just another part of life, along with it's counterpart, happiness.

I decided that day, to make the most out of life 
because nothing is certain, 
but I'm certain I will live, as long as I'm alive.

I will make the most out of my life, and inspire others do the same.

Things that I've accomplished in 2013:

-Managed to maintain a 3.6 GPA through nursing school thus far, and I'm graduating January 24, 2014. An awesome way to start off the new year! 

Shout out to my amazing Dad for being there for me 100% while I'm in school full time! Couldn't have done this without his support!

-I made a lot of funnies this year, and a lot of people laughed.

-I help a lot of elderly people in my condo complex and this year I may have saved two of their lives (and their hips). I'm like always the one discovering elderly people in trouble. Maybe I have a calling to save all the adorable helpless wrinkly people in the world!

-I met, and grew close to many good people this year. My classmates are awesome! And my girl Christine, if you are reading this, you're a true blessing in my life and I'm so glad we met! Love you big sis <33

-I am bettering my lifestyle after being diagnosed with a chronic autoimmune disease. I overcame the mental, emotional, and physical obstacles that this disease has caused, and I'm only going to keep growing stronger from it! It's taught me a lot about staying positive!

-And, last but not least
I met this amazing guy, and not only gained another best friend this year, but a boyfriend. Two for one! I dig it.
And along with this new relationship I also gained a new perspective on life. You lose some people, but then you gain some. Or as my Aunt Judy put it, you lose one angel and God sends you another. 

The holidays made me realize a lot. I have lost people, I have been through a lot, but I have gained so much. There are so many people, there is so much love, and so much support. 
So much strength in myself. 
And so much to live for. <3

So, goodbye to 2013,
And hello to the rest of my beautiful life!

Happy New Year!!!

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 26, 2013

Let's talk about sex (WARNING: TMI)

My inner pervert would like to tell you all about different types of people, and how they relate to sex.

So here goes...

"Innocent People" - Shy in large social situations.. They tend to be really loud and aggressive in bed. This is because their shy nature shelters them from being themselves around many people they aren't close with. All that bottled up angst comes out and it's like HOLY KUMQUATS WHERE DID YOU COME FROM? WHO ARE YOU AND WHAT DID YOU DO WITH MY SOCIALLY AWKWARD GIRLFRIEND?! 

The "perfectionists" and "self critics" swing back and forth between complete submission to being the total aggressor. They make sure that their "safe words" are properly pronounced and politically correct. On one hand, they seek to be "punished" for their "mistakes" in life, by submitting themselves to their significant other. They secretly (or maybe not so secretly) love to be man-handled. On the other hand, in times that they want control, they like to be aggressive and sexually attack their significant other whilst pretending that he doesn't want it. BUT IT'S NOT REALLY RAPE IF HE IS WILLING!

And then there are the closet freaks - SO, you accidentally stumbled upon a page from a porno magazine on a playground when you were a little girl. It was a picture of a woman giving a man oral sex. You could not wrap your mind around it so you became terrified of it, and you were like OMG WHY WOULD ANYONE WANT TO DO THAT? I DON'T UNDERSTAND THIS!? WHAT IF SOMEONE DOES THAT TO ME? HOLY GOD I MUST AVOID EVERYONE WITH A PENIS FOR THE REST OF MY LIFE! ....And then you grew out of that fear and became a complete closet pervert thinking about sex all the time..... until you admitted it on your blog and now everyone knows about it.....

By the way this is all BS (or maybe it's not?)  Maybe it IS about you too?! Anyway OH MY GAWD I AM A SICK INDIVIDUAL.

...Ya think?

Dear self I accept you for who you are, you freaking weirdo.

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. :)