“Hope Beyond The Crystal Pane” ~ The Lupus Magazine (my column)

All posts in the “Hope Beyond The Crystal Pane” ~ The Lupus Magazine (my column) category

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..

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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.

My Lupus Family and how they are ALWAYS there for me- The Lupus Magazine Article for October 2011

Published October 2, 2011 by Kristel Goodspeed-Correa

I thought for International Lupus Awareness Month (October), that I would  take this time to personally thank the entire Lupus Community for ALWAYS being there for me when I need them the most.

Here in the US, our Lupus Awareness month was changed to May so as not to conflict with Breast Cancer Awareness, which is also in October…but despite that, we are still part of the global community and stand strong with the rest of our international friends.  Lupus knows no boundaries, it effects people of all races, gender, countries, religions and even our 4 legged friends too.  It does not discriminate.

When I was first diagnosed, I remember how lost and afraid of the unknown I was.  I was literally terrified.  I had heard of Lupus prior to that but really had no knowledge of it whatsoever.  You google statistics, etc on the internet and at the time, there really was nothing encouraging  that I was reading.  Doom and Gloom.  And lots of the information available was confusing.

I remember reading how there was no new treatments at that time in over 50 years. Most of the treatments were considered “off-label” (created for other diseases, not Lupus).  Also, the medications being used are highly toxic!    What the heck?!!!!!    That made me SOOOO ANGRY!  I felt like no one cared about us.  Why werent there any new medications?  Was it because we were as a community predominantly women and we were being discriminated against by the medical community?  Lots of anger and resentment popped into my head.

I remember stumbling upon an article written about Breast Cancer around that same time period.  Basically, the article told the history of Breast Cancer Advocacy and how they went from being a virtual unknown disease to one that everyone became familiar with.  It told how the early Advocates literally walked door to door to companies, called them daily urging them to help make a difference.  They never gave up..they kept trying everything that they could think of to get the Corporations to take on their cause and it eventually worked.  15-20 years ago, no one really knew much about Breast Cancer, but advance ahead into the future a few decades and now everyone knows what it is.

I decided at that time, that I would do anything and everything in my power to try to change the future for Lupus too.  Dont like whats happening?  Change it- make a difference  😉  God blessed me with a big mouth and a vocal personality and voila here I am now.

I have been blessed to have met some remarkable Lupus patients from around the World.  I know people from almost every continent with the exception of maybe Asia.  Not sure why that is..but maybe in time, that will change also.  It is such an honor for me to have gotten to know people from all over the world and to see things from their perspectives.  I totally love my international friends.  They bring me such joy and love.   I think if our own governments would take the time to get to know people from other countries on this kind of a level, there would be hope for World Peace.

My Lupus family means the world to me.  They are one heck of an awesome group of people!  They bring me hope, love and encouragement at every turn.   I have received so many letters of thank you from some of them that have literally brought me to tears because it touched my heart so much.

From the bottom of my heart, Thank you for everything that you do for me, my Lupus Friends.  I love you all so much. Sending lots of love and hugs your way and wishing pain-free and symptom-free days xxooxx

[wearing my orange colors to support my international friends during International Lupus Awareness Month]

Orange is the international color of Lupus Awareness and Purple is also a Lupus Awareness color here in the US for organizations like the Lupus Foundation of America and the Alliance for Lupus Research.  Just in case you were wondering about why the different colors because it does get confusing.

Student Doctor at Rheumy Visit today- The Bridge over Troubled Water?~ Lupus Magazine Article for September 2011

Published August 19, 2011 by Kristel Goodspeed-Correa

Today’s 3 month follow-up visit with the Rheumatologist turned out to be eventful for once, thanks to the presence of a Student Doctor.  Finally got the  actual Doctor to somewhat listen and pay attention to the Lupus part of my diagnosis, question stuff and actually look at my medical history (which in my opinion should have been done when he picked up my case initially!)  Woot!  THANK YOU STUDENT DOCTOR!

I do apologize to the other patients for bumping their appointments back by an hour and a half though.  Sorry my bad..but sadly, it was the consequence of my Lupus part of the diagnosis being ignored for the past year or so.  It is my right as a patient to be listened to.  Also in my opinion, by not having it paid attention to, it causes some serious concern in the quality of care and quality of  life.  The Big Bad Wolf does not like to be ignored and neither do I.

We, the patients have to be our own best Advocates and do anything in our power to insure that our needs are being addressed and paid attention to.

Part of the reason for Student Doctors is so that they can learn on actual patients so when they are off on their own some day, they’ll know what to do.  Well, lets just say I used the opportunity to have my say on what NOT to do too.

One of the basic things doctors need to realize is that they need to LISTEN to what their patients are telling them and not ignore or blow off what we were are saying.  Listening is so important and helps build and strengthen the doctor-patient relationship.  Otherwise, we stop discussing things with them if we feel our concerns are going on deaf ears. Why bother?

Basically, after my last visit in May, I was left to feel like I was on my own as far as anything “non-joint related” was concerned.    As a patient, that makes me very angry because to me it comes across as “I dont matter”.  I am telling him  “This is what happened”..why cut me off when I am speaking..and why not pay attention to it??  This is valuable information in the treatment of MY care.

The appointment starts off with the Student Doctor coming in first, all by herself.  She asks me a series of questions that I answered honestly and openly.  I mentioned to her how last visit back in May, I was just coming off the worst flare I have had to date other than when I nearly died in 2007.  I had told my Doctor at the time about it and how badly I was having memory issues, brain fog, etc and his response was “Sorry not Joint Related” and did not pay attention to a word I said.  Just blew it off.  WTF?!

This is when I mentioned how my previous Rheumatologist before my current one, diagnosed and treated me for Lupus as well as RA.  And as you know, Lupus is SYSTEMIC, meaning it can effect any and all systems of the body, not just the joints.

I continued to tell her how current Rheumy appears to not pay attention to anything I mention unless it is RA related, as if that is all he seems to want to treat me for.  He even went so far as to send a note to my house where the first line read ” Patient seems to think she has Lupus…”

Ummm hello what??!!!  First off, I dont THINK I have Lupus, I was actually told that by the Rheumatologist who treated me before you.  If you read my chart, you would know that.  I am sure a copy of the letter he wrote me must be in my chart.

The Student Doctor eventually left the room and came back in with my Rheumatologist.  We discussed a lot of what I mentioned to the student and argued a bit pertaining to the previous visit in May.  He did his exam with the student present (making sure he was addressing a few of the issues I had mentioned that were ignored last time, which of course arent doing what they were then..now).

He paid attention to my inflammation on my left hand more today than last time too, considering it was present for both visits.  He recommended that I should consider a Cortisone shot for it, even though it is not currently causing me pain at all.  He is concerned that it will eventually damage the joint.

Rheumy then decides to take the Student Doctor, myself and Joe into his office and physically access the computer database of my medical history looking for WHERE or WHY my previous Rheumatologist would determine I had Lupus via the labwork.  He did find where he ran various ANA tests and Lupus Panels but apparently they were all ok.  I told him to the best of my knowledge I have never tested positive for ANA but I was under the impression that my diagnosis was based on meeting the criteria needed for the diagnosis.

Basically what is happening now is he has given the Student Doctor a research project to understand how, when and why I was previously diagnosed with Lupus.  He still doesnt believe I have it and wants to either prove to himself via existing records that yes, I do have Lupus  or to prove to me without doubt that no I do not have Lupus.  Of course, he then made a comment to the Student that it is not uncommon for Doctors to have varying opinions that do not always come to the same conclusion.

He also ordered another Lupus Panel as well as ANA testing for my upcoming labwork for my next visit with him in 3 months.  He commented to the Student that they should run these occasionally because “they can come back to bite you in the ass if they do not”..possibly making a dig at me for embarrassing him in front of a peer for not addressing this previously when I have been telling him this stuff all along.  Too bad, Doctor.  You should have listened to me from the get-go and none of this would have happened.

In addition to the labwork, I also was sent to Radiology to address the back pains I have also been complaining about.  Apparently, according to him these  cannot be due to RA so it has to be something else.  They took about 10 films of my back in various positions as well as 1 film of my left hand to see what is going on there too.

All in all, as taxing as this doctor’s appointment was today, I am happy to FINALLY be getting the Lupus part of my diagnosis addressed once and for all.  Its a shame that it took a Medical Student to do it, but I am happy she was there.  Thank you Student Doctor.  I am sure my Rheumatologist is probably none too happy with me at the moment, but at the same time, as a patient I have the right to be treated with respect and my complaints listened to and addressed. It is not fair to me to have a good chunk of my ailments ignored.

Not sure how things will end up, but time will tell.. perhaps my Rheumatologist will start listening to me more vs ignoring what I have to say.  I know what is happening with my body.  I am his best source of information and I need to be listened to.

Thank you to Patti Casciano for posting this song on her Facebook Wall today, it’s probably the perfect song to use  xxooxx ❤

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