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.

There Can Be Miracles~ A time for reflection and retrospection

Published September 18, 2011 by Kristel Goodspeed-Correa

Sometimes when we have not been feeling well for long lengths of time, we can not help but to start feeling sorry for ourselves. We are human after all, and it is very hard to NOT miss the lives that we used to live before we got sick.

Many days I have pondered on what used to be, what I used to be able to do, the fun I used to have..back before I got sick.  Boy, I sure can be a depressing soul when I want to be!  I can be my own worst enemy.

Then one day, I realized that I needed to stop doing this to myself!  Life can always become much worse than it is, so count my blessings for the things that I do have.  The most fortunate of these blessings is that I am STILL HERE to tell the tale of my illnesses and how they have effected me.

I honestly believe that God sends people into our lives at the times when we need them the most, guardian angels here on earth..to help pull ourselves out of the darkness and into the light.  My Grandmother used to tell me “Everything in life happens for a reason, even if we dont know the reason why..”

A few weeks ago, my good friend, Walter Fleury, celebrated the 27th Anniversary of a fatal car accident in which he was one of two survivors in an accident that killed several other people.  Since that fateful day in 1984, Walter has had to live his life in a wheelchair, paralyzed from the waist down with a spinal cord injury.  From that point forward, his life was permanently changed.

I graduated from high school with Walter and over time, we lost touch until about a year or so ago when we reconnected on facebook.  I have learned many lessons from Walter on forgiveness and caring.  I look at Walter, who has lost way more than I have..and he is always smiling, happy and ready to give of himself  and to help in any way he can.  An inspirational person to have in my life.  It makes you stop and think- what do I really have to complain about in comparison.

Somewhere along the line, I learned to turn this huge negative in my life (Lupus and RA) into something positive, or at least I hope so anyhow.  Hopefully, I am paying it forward with love, kindness and compassion as has been given to me.  I learned that by helping others, it  helps myself.

There is also the hope that somewhere, somehow.. someone will read my posts and inspire them to go into Medical Research and perhaps be the one to discover the cures for these diseases.  You just never know how your life may touch anothers somewhere along the line …but there is always hope that somehow your life can and will make a difference.   😉

~Who knows what miracles you can achieve..when you believe…~
– Mariah Carey/Whitney Houston,
“When you Believe”, Prince of Egypt soundtrack

For My Sister, Karen~Sisters in life and now Sisters in Autoimmunity, too

Published September 4, 2011 by Kristel Goodspeed-Correa

First and foremost I want to send my sister, Karen one giant long distance hug {{{{{{{{{{Karen}}}}}}}}}}}}.  She just found out that she was diagnosed with the Autoimmune disease, Hyperthyroidism.

It wasn’t all that long ago that I was in those same shoes learning that I was being diagnosed with a chronic disease.  Its a very scary place to be~ not knowing what to expect, reading the statistics, coping in a world where no one understands what you are going through.

Just know YOU ARE NOT ALONE!  There are millions of others out there worldwide who also suffer with this condition.  They are your best support system because they understand everything that you are going through.  I find out more information in talking with the other patients out there than I do my own doctors.

Autoimmune Diseases, in general, tend to run in families in the form of disease clusters.  Meaning that where one sister (Me) has Lupus & RA and another family member (Karen) has one or more of the other 100+ AI diseases out there , which in her case is Hyperthyroidism.  Sadly Karen, we just became a statistic, sorry to say…

What is Hyperthyroidism?

The Thyroid is what controls our metabolism, which ultimately effects how much we weigh, how many calories we burn, regulates our body temperatures (hot/cold) etc…

In Hyperthyroidism, the thyroid is overactive and producing too many hormones so it can also effect vital organs like the heart, causing an increased heart rate.  Pretty much every cell is effected when there is too much of the thyroid hormones being released into the body.  Think of the thyroid as the control center telling all of these things what to do, when it gets too little or too much of the thyroid hormones, chaos ensues.

Common symptoms and signs of hyperthyroidism
*Palpitations|
*Heat intolerance
*Nervousness
*Insomnia
*Breathlessness
*Increased bowel movements
*Light or absent menstrual periods
*Fatigue
*Fast heart rate
*Trembling hands
*Weight loss
*Muscle weakness
*Warm moist skin
*Hair loss
*Staring gaze

While there are many causes for Hyperthyroidism, one of the most common is Graves Disease, which is when the thyroid becomes enlarged.  But there are also other causes for it too (Ex a nodule growing inside the thyroid, inflammation of the thyroid gland, etc).   Graves Disease happens when antibodies are created by the immune system attacking the thyroid.  It is these antibodies that cause the thyroid to produce too much hormone.

Karen~  I am so sorry to have to joining me  into this world of Autoimmunity.  I wouldn’t have wished it on anyone, not even my worst enemy.  While our diseases may be different, there may be many commonalities that we can both relate to one another with.  I will be here for you whenever you need me to be xxooxx ❤

Love you and I hope that your medications help you to feel better very soon.  I am not only your sister, but your friend too.  You can never have too many friends

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 ❤

August 14th- my 4 year Anniversary at a 2nd Chance at Life- The importance of donating blood

Published August 9, 2011 by Kristel Goodspeed-Correa

Earlier today, I was talking on facebook about blood donation and how I was a huge supporter of the American Red Cross and Music saves Lives.  Now I know why it was on my mind.  My body was remembering my traumatic ER visit at a subconscious level!  My anniversary date of the event is only a few days away.

Psst Happy 4th Anniversary Big Bad Wolf of Lupus and the Gargoyle of RA.

Both of you ganged up on me and tried to take me out on August 14th, 2007  but HA!  You DID NOT succeed!  I am still here to tell the tale!  I may be small and appear to be an easy target, but guess what?  I am tougher and stronger than you thought!  HA!

You turned my own body against itself, caused me to nearly bleed to death requiring 3 blood transfusions, made me pass out at work, drop down to 86 pounds, etc.  You know it really isnt nice to scare the crap out of my boss like that.  He told me my lips went blue, my eyes were completely sunken in as well as encased in deep, dark red circles. [tsk tsk  bad, bad Monsters!]

I would not be here today if it was not for the kindness and generosity of those individuals who donated blood in the summer of 2007.

My bloodcell count that day was a “2”, its supposed to be a “12”.  I was in such sad, pathetic shape that my health insurance told me that I was rated at the highest level of urgency. Which of course explained why for the 1st time ever I was not only in a bed, but was off having tests within minutes of walking into the ER.   No lines, no waiting…I went literally right in.  Even for the tests, no sooner was I done one, they would get me back to my bed and whisk me off  to the next one within a matter of minutes.

According the American Red Cross~ 500, 000 blood donors are needed just in the month of August alone.  Here is the link to their website for more information on blood donation or to see if there are any upcoming blood drives in your area http://www.redcrossblood.org/ .

According to the Music Saves Lives webpage, 9,465,189 people have needed blood donations since Jan 1, 2011.  And that number is still climbing.  Here is the link to their website  http://www.musicsaveslives.org/about.php .

While I am unable to donate blood because of my medications and the Lupus,  I do occasionally try to remind people how important it is to donate blood if/when they can.  I know in my heart, I would be dead if it was not for the 3 blood transfusions I had that day.  So I am paying it forward in the only way I can.  Encouraging others to donate blood to save lives, just like they did for me in 2007.

As for you Wolfie and Gargoyle —> I will continue to kick both of your asses and will survive 😉  So give it up already.  I refuse to let you win.

Hope~Faith of the Heart

Published August 7, 2011 by Kristel Goodspeed-Correa

One of the things you learn really quick  when you are diagnosed with Lupus and RA is that both diseases are unpredictable, and to expect the unexpected. Just when you think you have seen just about everything that these diseases have in their arsenal, they both manage to still sneak in a few curve balls every so often.

The best advice I can give to anyone suffering with these diseases is to keep the faith.  Always keep the hope for a better and brighter tomorrow.  Think of these diseases as some gigantic Rubik’s Cube, waiting for medical science to solve it’s complicated puzzles.  And they will eventually..its just a matter of time. [fingers crossed that it is in OUR lifetime].

Both of these diseases, in essence, is your own body declaring war on itself for no known reason. Perhaps the Big Bad Wolf of Lupus and the Gargoyle of RA are the disease versions of poker players and dont want to give up their hand.  Otherwise, they would be easily defeated if we knew their strategy and game plan. Maybe they like to experiment as Magicians from time to time and pull new symptoms/ailments out of their bag of tricks.

No one can ever say that either of these diseases are boring by any means. You just never know from day to day what these diseases will throw your way.  I’ve personally experienced a wide range of symptoms and just random weird stuff in the past few years.  I think I can safely say that I have long ago met any imaginary quota that seems to be in the minds of the healthy people, who haven’t a clue to what it is really like to have a chronic illness.  For some odd reason, they seem to be under the false impression that you get sick one day and it  has to go away [shrug].  Reality is..it doesn’t , that’s why it’s chronic.  We do not have the common cold or flu.

One of the most astonishing things to me is how many people out there literally believe that both of these diseases are “no big deal”.  Umm hello, it tried to kill me in 2007, I think that is a very big deal.  I’ve seen first hand the potential of these 2 monsters and its pretty scary to experience.

While I would be lying if I said that the stupid things people say or do does not hurt or upset me, because it does but somehow we have to get past that.  Trust me, people have made me cry many a times over the stupid and cruel things that they have said to me out of IGNORANCE because its easier for healthy people to THINK whatever they feel like thinking, even if it isnt actually factual than for them to google the correct information before talking out their butts.  I’ve actually had one person on AOL tell me once that I didnt have Lupus, I had “Munchausen By Chatroom” because I am “internet savy and know how to google” because I had “too many maladies to be a real disease”.  I basically told him I would make sure I relayed that information on to my Rheumatologist, someone who actually specializes in these diseases [eyeroll].

Point is..we have to somehow figure out how to push the ignorance of the general public aside when they say things like that.  We can try as hard as we can to educate them correctly, but some people dont want to be educated and there is nothing we can do about that.  We cannot force people to want to know the truth, so it’s best to move on and hope that eventually one day, it clicks with them and they finally “get it”.

We are fighting a tough enough battle of our own to do without having to fight the ignorances of others out there.  It is our own battle with these diseases that we need to focus our strengths and energies.

I am a living and breathing example that both diseases can be overcome to functional degrees for the most part.  As I mentioned earlier, I was pretty sick back in 2007 and was literally on death’s door for many months before they figured out what was wrong with me.  It took about a year or 2, before my medications started to keep both diseases under control pretty much.  I still have pain and varying issues, dont get me wrong…but compared to what they once were- OMG I am much better and healthier overall now than I was back then.

I do want to note though, that I DO NOT have organ failure or anything as serious as that with my Lupus and I do realize that there are many out there that do. (I do have severe RA, however) .

It is for these people that I do a lot of what I do for though with blogging, and various other stuff I do.  I believe it’s my responsibility as one of the “healthier” Lupus patients to be there for the others who do have more serious forms of the disease than I do.  I believe everything in life happens for a reason, even Lupus & RA…and I do everything in my power to try to make a difference.

Maybe, just maybe someone out there on the internet will see and read our blogs and be inspired to go into medical research to help solve some of these complicated puzzles. Never lose hope because you just never know.  Medical Science has advances every day, eventually it is bound to be OUR TURN.

~… ‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
I’ve got faith, I’ve got faith, faith of the heart…~

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…

%d bloggers like this: