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.  **

RA~ Why its a good thing that the ACR is recommending more aggressive treatments early on in diagnosis

Published April 6, 2012 by Kristel Goodspeed-Correa

I was reading a news article about the American College of Rheumatology and how they are recommending much more aggressive treatment plans during the early stages of RA.  Of course, it got me to thinking… 😉

Wow~ Its hard to believe that it has already almost been 5 years since my severe RA diagnosis (August 2007)!  And almost 4 years since my Lupus diagnosis (Fall 2008).   I was literally diagnosed right from the get-go with SEVERE Rheumatoid Arthritis.  I recall my Rheumatologist  telling me, this is NOT something that happens overnight.  This happens over the course of years.  So why then..despite having physicals every year, wasn’t the RA questioned earlier on BEFORE it got to the Severe Stage???

I had complained on pains to my Physicians for years and years and it fell on deaf ears.   WHY wasn’t I tested for RA sooner?  If I had been, the damages I am seeing currently, could have possibly been reversed before they caused permanent deformities.  This is WHY the American College of Rheumatology is recommending treating RA much more aggressively in it’s earliest stages.  So it can be reversed!  By the time, I was diagnosed, it was already too late- it was in severe stages.

I personally would like to see more Physician education on how to recognize the early stages of RA and other Autoimmune Diseases.  This education is especially needed among Primary Care Physicians who write out referrals to the Rheumatic Specialists.   They need to listen to their patients and test for these types of diseases much, much sooner than they do currently.

At this time, back in 2007, I could barely walk because I was so crippled from these diseases. It was too painful to even wash my own hair because the pain was so bad that I could not even lift up my own arm.

I have had many nights where NOTHING, not even prescription pain medication would even touch the pain.  It did not even lessen it.   Sometimes that would go on for weeks or months without any relief, especially during the winter months or in bad weather.

Here we are 5 years later and although I am showing signs of major damage done by the RA, I am once again able to walk for the most part and able to do most things I was no longer able to do in 2007.  However, I have severe damages done by the RA at the same time.

Now I STILL get issues and there are some stuff that I do still have difficulty doing from time to time.  My left hand in particular has 2 of the knuckles that have literally been eaten away half way across by the disease.  This damage was found via x-ray.  My back is one hot mess back there- uggghhhh

I just had to have my boyfriend replace the doorknob in the bathroom to a lever one vs a knob because I was having too much difficulty turning the knob and was getting trapped in my own bathroom and couldn’t get out again.   Darn “RA PROBLEMS”  lol.   Some of the crazy stuff that happens to us, you seriously have to find some sort of humor in because otherwise, I think we would cry.

I think its great that the ACR is recommending much more aggressive treatment plans earlier on in diagnosis.  It may be too late for me, for MY RA, because my damages have already begun to take place…  but it might possibly prevent these same damages  from happening to future patients.  And that’s a good thing.  No one should have to be permanently disfigured by this disease.  The earlier they catch the disease and begin to treat it , it has a greater chance of being reversed.   Now let’s hope that more Physician Education into the earlier stages of RA is also a priority as well.  The sooner the disease gets diagnosed and on treatment plans, the better the eventual outcome.

International Awareness Project for Rheumatic Autoimmune Diseases

Published January 5, 2012 by Kristel Goodspeed-Correa

I thought it would be interesting to talk about the latest Awareness Project that I am proud to be a part of .  Its called “Show Us Your Hands”.

Show Us Your Hands was created by fellow RA Blogger, RA Guy http://www.rheumatoidarthritisguy.com/.

Show us your hands is an international effort to spread awareness for Rheumatic autoimmune diseases, like Rheumatoid Arthritis, Lupus, and any other rheumatic arthritic diseases.

“Autoimmune arthritis hands are a visible sign of the enormous strength of people who experience so much pain, that their hands are literally being pulled out of shape. We are proud of our hands. They have endured a lot, and they will continue to endure even more. We will never be ashamed of our hands, no matter what they look like!”

The project debuted December 23, 2011 with 520 photos in the collage.  Last I heard that number keeps growing as more patients are becoming aware of it’s existance!  WOOOT!  You go Rheumatoid Arthritis Guy!  xxooxx ❤  Major Kudos to you 🙂

I have both RA and Lupus so I submitted some photos of my left hand, taken Thanksgiving weekend to the collage and they promptly responded back that they were including 2 of my photos into it.  These were the ones I submitted:

Visit the Show Us Your Hands website: http://www.showusyourhands.com/  and submit a photo.  Be proud of your hands.  No matter what these diseases throw at us..always be proud of WHO you are and have hope that there will be a better and brighter tomorrow for all of us..

Goodbye to the Lupus Magazine (April 2010 – December 2011) –

Published December 8, 2011 by Kristel Goodspeed-Correa

By now most of you have probably heard that the Lupus Magazine has officially decided to retire.. although this truly saddens me to see the end of a truly wonderful publication~ One that was 100% all volunteer, 100% non-profit and one that touched the lives and hearts of people from all over the world and one that made a difference.  It was something to truly be proud of and I am so honored to have been a part of it.

Official statement from the Lupus Magazine “It’s with regret that after almost two fabulous years, The Lupus Magazine is retiring. Although no longer regularly updated, the magazine will however remain online to highlight and link to some wonderful organizations, advocates and writers. It’s been a wonderful journey and we thank everyone who’s been involved in any way. Feel free to take a look around and discover some worthy lupus talent and organizations.”  http://www.thelupusmagazine.com/

Geoff Thomas, Thank you so much for giving me this awesome opportunity and enriching my life.  I have met some truly phenomenal people and I will forever be grateful to you.  Writing for the magazine has been an absolute pleasure.  I have often been amazed at how truly talented the other writers are in areas outside of writing- like musically, artistically. I wish them all the best in their future endeavors.  Love you all xxooxx ❤

There is a time and place for everything in this world.  Right now it is your time to shine, Geoff.  I am so proud of you and I wish you all the best in your future. I know you are getting an opportunity to work on some projects that you have always wanted to do and thats fantastic!   You are an amazing individual and I hope that some of your awesomeness has rubbed off on me too 😉  lol  I wish you all the best, Geoff and will always be proud of you.  Love you xxooxx ❤

And to the fans of the Lupus Magazine..  I love you all with all my heart. I will continue to maintain my blog (which the Lupus Magazine’s page will still link to if you visit it’s page).  I hope that you continue to stop by and visit mine and the other writer blogs.    I am not going anywhere. I will still be here for all of you as much as I can. …  It is because of YOU, that I have had this phenomenal experience and you all mean the world to me.

Goodbye to the Lupus Magazine- it has been one hell of a fantastic run and one I am so proud to have been a part of.  I will truly miss it…  but sometimes life opens up new and exciting paths to follow and this is one of those times.

Wishing everyone the very best and hoping that the future is one for the record books!

Lupus, RA & the Holidays- The Lupus Magazine article for December 2011

Published November 30, 2011 by Kristel Goodspeed-Correa

Unfortunately, diseases do not take time off for the holidays, so we MUST remember to ask for help when we need it. I learned this lesson the hard way on Thanksgiving Day cooking the turkey.

Hopefully, my story is one of caution to help the rest of you avoid making the same mistake that I did..  Ask for help if you need it, PLEASE?!  While I may find a funny spin to put on the story, I seriously hurt myself in its aftermath, that made itself visible the next morning.

While my story talks more on RA than Lupus, I think the message is still the same regardless of which diseases we have..  I just happen to have both.  We seriously need to be careful and ask for help when we need it.  No excuses!  We have to because we can seriously hurt ourselves if we do not.

I actually had “hands on standby” to help me out that day.  My daughter, Stephanie actually did help out a lot that day.  She made pies, she chopped up some of the vegetables and did some of the preparation, too.   The turkey was supposed to cook until 5pm.  No problem, we would put the squash and potatoes on about an hour or so before that and we are good to go…

Stephanie had to work that night from 8pm to 6am, so I sent her upstairs to sleep before she went into work.  Typical Mom, I worried about her potentially falling asleep driving home the next morning if she didnt.  Anyhow, much to my surprise, I peeked in on the turkey around 3pm and the popper was telling me it was already done- 2 hours ahead of schedule!  Akkkk!

I turned off the oven and started finishing chopping up the squash and peeling potatoes.  Next thing you know, I hear SPLASH, SPLASH in my stove. Oh noooo!  The turkey juices are spilling over in there.  NO!!!!  That turkey had the most juice I have ever seen!  Literally, that turkey was sitting in juices  that  filled 1/2 way into the pan.

By this point, I am paranoid of a grease fire so I think to myself ~should I go wake up Stephanie?  Then decide noooooo  I’ll let her sleep.  I can handle this.  Ohh how I lie to myself still, still not wanting to cave into the reality of “no, I shouldnt be doing this”   I guess that if I did, I would have to admit weakness.

So then comes to the start to what I termed “RA problems” (ok, ok…I admit its a cheap rip off of Snookie from the Jersey Shore and her “meatball problems”  LOL- I saw some of the episodes) but you have to find some sort of humor in it all, otherwise you would cry your eyes out..

I grab the oven mitts and heaved that huge turkey out of the oven (I swear, I think it weighed as much as me!) [whew] its on top of the stove now.  Now what do I do with it so I can finish cooking and I cant leave it sitting in all those juices making it’s own soup ????!!!  RA PROBLEMS!  Its not like I have the strength to carry it very far, esp when its hot and can burn me. What to do, what to do!

AHH   HAAA!  So I grab another huge pan, deciding ok, I am going to put this huge turkey into the “turkey relocation progam” and relocate it from pan A to Pan B while leaving all those juices in Pan A so we can use them later 😉  Sounds simple enough, right?  Wrong- More RA PROBLEMS!   How do you lift up this huge, steaming hot bird?  Esp when you have no real strength?

I grab the turkey by it’s legs  LOL  hmmm seems like I can lift it that way pretty easily.   Umm yeah, pretty much until I got the entire thing airborne then that turkey decided well you know, it had cooked a long time and randomly  just began to slide off the bones before it got to pan B.   akkkkkk RA PROBLEMS!  LOL  trying to quickly get it over to Pan B as the meat was sliding off the bones before it got everywhere and/or burned me!  By the time I got it all over to pan B, the meat had slid off the legs I was holding and I was left with 2 very large, yet clean bones (so I threw those out!)

At this point, I thought to myself “Ohhh noooo”  this doesnt even look like a turkey anymore.  Just a heap of meat in a pan  LOL  [angelic look]  No one will ever know if I get it all carved before anyone knows what happened muahahahahaa  Oh my  LOL  What an experience that turkey was…  No more turkey cooking for me!!!!!!

For those of you who do not know, I recently had some x-rays taken of my left hand.  Results= Not good.  The RA has literally eaten 1/2 way across 2 of my knuckles (Rheumy called it the carpal heads of my middle finger and index fingers).   I KNEW about this Thanksgiving Day.  What I did not think about that day was the potential permanent damage I may have inflicted on my left hand.  Literally both of those fingers only have 1/2 the bone present in those joints currently.  What if the weight of that turkey had SNAPPED the remaining 1/2?  That was very dumb of me not to think of it.

The photos below are what I woke up to the next morning , so please learn from my own stupidity and ask for help when cooking these holiday dinners.  Dont make excuses for yourself and end up hurting yourself like I did.

Like I said earlier, although I found a funny spin to the story, ultimately damaging yourself really is not funny at all.  Trust me, the pain from this was OFF THE CHARTS excruciating!  I wont be making that same mistake any time soon.

Have a Happy and safe Holiday season filled with love, family and happiness.
Happy Holidays to all of my international friends xxooxxoo ❤

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.
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