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What is Lupus? Coloring Book Project I am working on with RSD advocate Jerry Pond

Published February 8, 2013 by Kristel Goodspeed-Correa

My friends and I all had plans to go play in the field today. I was very sad to find out that my friend Starr was not there. I asked the other Bunnies if they knew where she was.

Sebastian told me he heard that she was home sick in bed with a Lupus flare. “What is a Lupus flare?”, I asked him. “I do not know”, he replied but added that “Starr is sick quite often with them”. “Sometimes, she even has to go to the hospital”, he said.

“I am going to go visit her”, I told all of my friends. “She must be very sad being home all by herself while we are all outside playing”.

“That’s a great idea”, Dot replied, “Why dont we all go?”.

So all of the bunnies gathered together and hopped along the path through the fields and into the forest to the burrow where Starr lived. When we got there, Dr. Cottontail was visiting with her. He was happy to see us because he knew it would make his patient Starr so much happier to have friends there with her.

“Dr. Cottontail? What is Lupus”, I asked him.

“Well Hope, that is an excellent question. Thank you for asking. Why dont you and the other bunnies all gather around the stump table here and we will talk on it for a little while”, Dr Cottontail replied.

Dr Cottontail asked the group, “Do any of you smart little bunnies know what the immune system is?”. Leo immediately raised his paw, ” I do! I do! That is what keeps us from getting sick!”

“Good answer. I knew you were smart bunnies”, Doctor Cottontail smiled and winked. at the group. He then went on to say “That Lupus is a complicated disease that falls into a group of over 100 different other diseases known as Autoimmune Diseases.”

Shadow raised her paw “What does autoimmune mean?”

Doctor Cottontail responded, “Autoimmune diseases is when the immune system turns against itself. It is when the body goes to war against it’s own self.”

“Oh wow”, Leo shouted “Why on earth would it do that?!”

” No one knows”, Doctor Cottontail replied. “For Lupus it might be easier for you to understand if you think of it in terms of playing Good Guys and Bad Guys. In healthy people, the immune system is the Good Guy and the things that do not belong in the body are the Bad Guys. Things like bacteria, germs, viruses, etc.

The immune system, which we already know helps to keep us healthy, normally fights against things that do not belong in the body that make us sick. With Lupus, the immune system gets confused. For unknown reasons, it thinks everything is a bad guy. Even itself. So it fights with everything. It can sometimes try to kill important parts that the body needs to stay alive like the heart, lungs, kidneys, brain, etc”.  Every patient experiences Lupus differently.  Some have a mild case of it and others have it very badly when the immune system attacks the important parts that keeps them alive.

Sometimes a Lupus flare shows up as rash across the face that looks like a butterfly.  We call that a malar rash.  A flare can affect how your brain thinks (we call that Lupus Brain Fog), which makes you forget things or gets you very dizzy at times.  It feels like there is a cloud sitting on your brain.  Some patients end up sleeping a lot because they get very tired (called Lupus Fatigue), others barely sleep at all (insomnia).

The sun is very bad for Lupus.  People with Lupus are sensitive to the sun’s UV-A and UV-B rays.  That is what we call photosensitivity.  The rays of the sun can cause a Lupus flare”.

“How do you get rid of Lupus?”, Sebastian asked.

Dr. Cottontail replied, “Sadly, they do not know yet.  There is no known cure for it.”

“That makes me sad”, Hope responded, “Is there anything we can do to help?”

“Sure you can”, Dr. Cottontail stated.  “You can be a big help by walking in some of the Lupus Awareness Walks that the Alliance for Lupus Research and the Lupus Foundation of America do each year and try to raise money for Medical Research.  You can also wear Purple clothes and wrists bands to help make people know about Lupus.  But most of all, you can help by being there for your friend, Starr.  She needs to know she isn’t alone in this and that you all care about her.”

“That’s a GREAT idea”, Hope shouted.

**  Jerry Pond is hoping to create a series of coloring books dealing with different diseases and helping to educate young children about these diseases in ways that they can easily understand.  **

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Remembering to be Thankful For What We Have~ The Lupus Magazine article for November

Published October 30, 2011 by Kristel Goodspeed-Correa

Wow..its hard to believe it is already November!  Thanksgiving is just around the corner.  While we should always remember to be thankful for the things in life that we do have, traditionally this is the time of year where we tend to think upon it so much more.

Sometimes that is easier said than done, especially in tough, economic times.  Money is tight, worries about how you will pay your bills, whether or not we’ll have a job tomorrow, and so many other things..  Chronic illnesses compound these feelings of woe.  It is essential for our own well-being to try to turn these negatives into positives to the best of our own abilities.

Sometimes being thankful for the little things in life can be a stepping stone to a happier you.  It is tough enough to always be sick all the time, but we can chose on how we deal with it.  Regardless of what we decide, we are at the mercy of whatever course our diseases take.  We can either be miserable or we can accept what we cannot change, make the best of a bad situation and try to live through it as happy as we can.

Stress (and feelings of misery/depression) feed fuel to our illnesses.  Why feed our Monsters  any more than necessary?  No one is happy about being chronically ill, that’s a fact.  No one expects you to be.  It stinks actually, so we must think to ourselves– how do we take a stinky situation and make it smell a lil bit more like roses?   What is it that does make us truly feel happy?  And try to bring forth more of that into our lives to help brighten up even our darkest days.

Sometimes we need to take the time to reflect on whatever good things life does throw our way.  Be thankful we have those and to try not to dwell so much on the bad things.  Life is full of beautiful and wonderful adventures and experiences.  Sometimes we just have to look a little harder or deeper to find them and enjoy what we do have.

Happy Halloween~

Published October 30, 2011 by Kristel Goodspeed-Correa

Monsters, Goblins and Ghouls take over the night;
Giving everyone they encounter somewhat of a fright,

Hiding deep within the shadows, they lay in wait;
For some tasty unsuspecting human to meet their fate,

Wicked Witches casting unearthly spells;
summoning up the demons of hell,

Zombies wandering out from beyond their graves;
Looking for warm, inviting, scrumptious brains,

Werewolves howling at the moon’s eerie glow;
Sending shivers of terror up the spines to all that know,

Vampires fangs sparking with the freshly drawn blood of their prey;
Hunting all through the night while they hide in seclusion at the dawn of day,

Ghosts  enjoying their evening with every haunt;
Some playful while others more sinister, but all  love to taunt,

Paralyzed in fear, all you can do is run for your life and scream;
Waking up in a deep sweat, you realize …it’s all been a very bad dream.

Happy Halloween 🙂

This new poem reminds me a lot of the one I wrote about a decade ago  when I used to write poems much more frequently.  So I will share that one as well (especially since its one of my favorite ones ever)

Finally, it is nearly October 31st, HALLOWEEN;
that time of year, when it is fun to scream,
Children everywhere dress in the most frightening of clothes;
going door to door trick or treating to the houses they chose,
Jack-O-Lanterns give the night an eery look;
while the children eat most of the candy they took,
Ghouls, goblins, witches, zombies and bats;
remember to watch out for that superstitious black cat,
vampires out at the midnight hour;
searching for blood with their unearthly powers,
Ghosts will haunt as they roam through the night;
giving all who will see them, much more than a fright,
Freddy Krueger…a vicious man, who is more than a creep;
and if your arent careful, he come for you when you are asleep,
The headless horseman gallops around;
his head in his hands, as he searches the town,
The witches in Salem will stir up their brew;
filling it with toads and snails, and hopefully not of you,
Costume parties everywhere…Just look at the flyers;
a great time will be had so long as you avoid Michael Myers,
Cemeteries will be filled with the walking dead;
and you can be sure, it is not all in your head,
Be nice to the monster, Frankenstein;
He is misunderstood, and is gentle and kind,
Remember that Halloween is supposed to be fun;
and to be leary of pranks, that will hurt anyone.

Welcome Home, Stephanie

Published July 29, 2011 by Kristel Goodspeed-Correa

Welcome Home, Stephanie..

My daughter decided to move back home to Illinois to help me out.  I think its because she is worried about me.  She decided this after she visited here for a few weeks last summer.   I must have really looked horrible 😦

Perhaps seeing Lupus and it’s effects first-hand vs reading  my posts about it on facebook had something to do with it.  While I do post a lot about whats going on, I really make an effort to try not to post so much that I become a chronic complainer.  I tend to post mostly about new occurrences and not about stuff that may happen often or all the time.  (Ex vomiting…I may make a post once in a blue moon vs the reality of it which is a few times a week.  I figure no one really wants to hear about me tossing my cookies every couple of days due to the Methotrexate- YUCK!)

But, its hard NOT to notice something like that when you are in the same house.   Lupus, up close and personal…full disclosure.  It wont be as easy to “hide” what I might not want her to know because I dont want for her to worry unnecessarily.  On facebook, I could just chose not to talk about it or word it in a way that wasnt so scary.

So far she has started to clean things, which the apartment really needs because it is often difficult for me to do a decent job at it due to the RA and the Lupus.   I try to save most of my energy for work so usually by the time I get home, I am either too tired or in too much pain for scrubbing things down, etc.  That alone will be a big help.

She is also going to try to get a job to help out a little that way also.  Another good thing.

One of the things I may have to get used to though, is her having friends over much more than I had company over before.  When I feel horrible, I may not feel like having people over, etc..  She’s an adult now, and where she is helping out, she should be able to have guests over type thing.  Especially worried about overnight guests or guests who stay late into the night.   Hopefully we can figure something out about this so it doesnt get to be “too much” for either of us and before it becomes a problem.  I might be worrying for nothing. We’ll see and time will tell for that.

Its great to see her again.  I missed her while she was gone.  Hopefully, things work out and she doesnt get burned out or annoyed with “helping” much more than she may have anticipated, etc…

Lupus Sometimes Comes With Blessings When You Least Expect them

Published July 27, 2011 by Kristel Goodspeed-Correa

While I wouldnt wish Lupus upon anyone, not even my worst enemy..for me it has also come with some really fantastic blessings.
OMG, I can not begin to tell you how phenomenal my Lupus friends from all over the world are.  We are just like one huge family and truly look out for one another and help each other when the times are tough.  I honestly could not have asked to associated with a greater group of people.  I love you all xxooxx ❤

I came home from work today to an incredible gift awaiting me on my facebook wall.  My friend, Virginia Jones had this image created especially for me from The Ink Spot https://www.facebook.com/pages/The-Ink-Spot/131346203577183 .

What really makes it special is that this is a gift that comes straight from the heart.  I had NO IDEA Virginia was having it made for me..  I LOVE IT, its so beautiful.

Thank you Virginia, that truly made my day!  It came when I needed a pick me up because I havent felt well in a few days.  I really needed something to make me feel better.   You are truly a one of my blessings

Music~ helps soothe the soul & pick up your spirits when feeling totally horrible

Published July 24, 2011 by Kristel Goodspeed-Correa

Music <–Truly one of life’s blessings when it comes to making people feel better.  God bless Youtube!  Best invention ever when it comes to helping chronically ill people like myself to feel better.  Of course, YouTube would be nothing if it was not for the talented artists who share their music with the world.  Thank you, from the bottom of my heart.

No matter what my mood is, I can always find some song out there  to help me feel better. Music has the ability to evoke feelings that help cleanse away whatever troubles are building up deep down in the sub-conscience.  While it wont take away the realities of having two major illnesses nor the aches and pains that those diseases inflict upon me, it does have a way of changing my mood and attitude into a better and more positive one.

Music is in my blood.  My father was a drummer for many years while I was growing up.  Although I have no natural musical talents of my own, I think the rhythms and beats must pump through my veins, giving me life just the same.

I have the ability to get completely lost in a song where I have no perception of anything going on around me.  The walls could probably crash in around me and I wouldn’t have a clue.  I am in my own little world 🙂

I will listen to some songs over and over again.  Especially if I am in a sad mood.  However long it takes to get me to cry and get it out of my system.  Once those sad feelings are released, I feel tons better- like a huge weight was lifted off my shoulders.

My neighbors probably hate my gutts when I get into some songs.  I make a pretend microphone with my fist and sing my heart out (just not well, I am afraid).  My animals like my singing though.  I sing to them all the time  LOL  Poor things, they must be tone-deaf  😉  My shorkie, Hope, likes when I dance and sing to her.

Music is a great escape from the realities of our life, even if just for a little while.  Sometimes we need a break from all of life’s problems.  So next time you arent feeling well, try listening and getting lost in some music…it might do wonders for you.

Until next time…Dont stop thinkin’ about Tomorrow .  It WILL get better, tomorrow is a new day

 

 

 

 

Congrats to my niece, Samantha Goodspeed- class of 2011- Nashua High School

Published June 19, 2011 by Kristel Goodspeed-Correa

I am very happy and excited to see that Sam has taken an interest in Nursing/Health!

Of course, secretly hoping she will decide to specialize in Autoimmune Diseases/Rheumatology/Medical Research, but that is her own path to chose, not mine.  Still very excited & proud for her whatever she choses to pursue.

Go and change the world, Sam xxooxx ❤   I know you will make a difference  in the lives of many.  Wishing all the best for your beautiful and bright future in the medical profession.

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