Lupus

All posts tagged Lupus

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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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 ❤

The good news: Lupus Migraine is gone. The bad news: RA back pain is still here.

Published June 24, 2011 by Kristel Goodspeed-Correa

Lucky for me, I was actually able to get in a little sleep after my last post, which is always a good thing.  I get a lot of insomnia with  these diseases.

I have noticed that my tolerance to pain depends on how much or how little sleep I am able to get.  Its amazing how much better I feel if I am able to actually get some decent sleep in.  I do have a stubborn case of insomnia because most of the time, NOTHING will help me to sleep.

Maybe insomnia is the diseases way of keeping us weak so they can attack at will???  I think overall, that the Lupus and the RA tend to target the weakest parts of my body.  Why?  I think its because its the easiest for them to do.  I tend to think of them as the bullies of the immune system.

The Excedrin and the Vicks did help alleviate the Lupus migraine, however, I still have some severe RA back pains today.   The back pains are always difficult to get rid of, mostly because they are in areas where I cannot reach! I will ask Joe if he can rub in and massage that area with some arthritis cream later on when he comes home from work and hope it helps.

Ohhh a Double Team~ Big Bad Wolf of Lupus and the Gargoyle of RA strikes again… Lupus Migraine and RA back/neck/shoulder pains :(

Published June 24, 2011 by Kristel Goodspeed-Correa

Uggghhh  a double whammy!  How Rude!!!

Dont my monsters of autoimmunity  have anything better to do?  Like sleep, perhaps?  A night without insomnia would be a nice welcomed change of pace.

Today, Wolfie  has decided it would be fun to wrap his gigantic furry paws around the back of my head and squeeze with all his might.  It feels like there is this gigantic set of invisible hands trying to crush the base of my skull in 😦   It also feels as though I am being jabbed in the temples with a letter opener or something too.

And if that isnt bad enough, his partner in crime, the infamous Gargoyle of RA is taking a few whacks at me as well in the center of my spine and up into my shoulders.

The reason I nicknamed my RA, “The Gargoyle” is because of how over time, it can cause some major deformities.  I’ve already seen some of his “artistry” on my pinky finger to my right hand.  It now resembles a bowling pin.  Both of my knees are horrific looking too now compared to what they once were
😦

4:30 am- Took 2 Excedrin Migraines and coated my temples and forehead in Vicks Vaporub.  I also rubbed the Vicks into the back of my neck.  Sometimes both products will help.  Unfortunately, I havent found anything that works 100% of the time.  Bummer!  But heck, even if it lessens it to a more tolerable level, I am happy with that.

I am paranoid of becoming addicted to pain medications so I always start off trying to alleviate the pain with non-narcotics first and work my way up to the Vicodin.  Giving at least 6 hours inbetween so I dont have an accidental overdose or drug interaction.  I rarely use the Vicodin unless I am truly desperate for pain relief because I cant stand the side effects it has on me.

In case you arent aware, Vicks Vaporub actually has a topical analgesic in it’s ingredients known as Camphor.  I think the camphor and the eucalyptus that is also an ingredient in the Vicks seeps into the veins and helps to  open them up so blood flows better.  I dont know that for sure, but thats my theory 😉

Wish me luck [crossing fingers]

My Lupus Awareness Poem :)

Published June 17, 2011 by Kristel Goodspeed-Correa

Our Symbol is that of a purple butterfly;
flying high and free up into the sky,

For us, it is a symbol of hope;
something beautiful to think on, while trying to cope.

What is Lupus, you might ask;
An autoimmune disease which often has a red malar rash,

Its a disease in which the body turns against it’s own self;
which then attacks our vital organs at a molecular level cell by cell..

The pains from Lupus can often overwhelm;
so much so that I think they should have their own rhealm.

It is certainly not a boring disease by any means;
each day something new, as it takes turns causing havoc within our genes.

The first medication specifically for Lupus, took over 50 years;
while the patients endured, suffered and shed so many tears,

Do you know most medications for Lupus are off-label and not even FDA approved?
Money is desperately needed for research and public awareness for it sure needs to improve,

1.5- 2 million patients here in the US and millions more worldwide;
Not quite as rare as people believe it to be, that myth needs to subside,

Someone is diagnosed with Lupus every 1/2 hour here in the USA;
The Lupus Community is growing larger each and every day,

To suppress our immune systems, chemo is often used long-term;
side effect however, our bodies can no longer fight off any germs,

Anti-malarials is another medication that is often used;
low blood platelets occur and the body is easily bruised.

We’ve waited long enough for our voices to be heard;
toxic drugs are not the answer on this road to a cure,

Lupus seldom likes to travel alone;
so it invites other diseases into our body to create a war zone,

The general public really has no understanding of Lupus at all, nor do they appear to care;

they assume it’s no big deal, despite the fact the disease attacks it’s patients everywhere.

A common cold or flu could potentially kill us since we have no immune system to fight it off;

so please REMEMBER that next time when you are out in public and decide to cough!

What would you do if this disease happened to you?
Sit back and say nothing..like most people expect US to do?

Lupus Flare burn out? And how my phenomenal online friends help me through- June 2011

Published June 16, 2011 by Kristel Goodspeed-Correa

Wow!  What a crazy couple of months this has been for me.  I’ve been in a Lupus flare for close to 2 months now and it’s really starting to take it’s toll on me.  I am really beginning to wonder if I might be in the midst of a Lupus flare burn out.  Is there even such a thing?  I think so…

I’ve been sitting here, staring at a blank screen for awhile now trying to think on something positive to say.  Hmmm interesting dilemma.  This particular flare has been the worse I have had since being diagnosed.  It is very difficult to have a positive spin on this disease when you have felt like a Mack truck has run you over and over…then backed up and ran over you again…  Where’d that wolf get his license anyhow?  Must have found some app on the internet is my best guess 😉

Despite it all though, sometimes positive and inspirational things can be found underneath our noses in the most unlikeliest of places.  We just have to look for them.  For me, it has been the support and encouragement of my online friends.  They are the best group of people in the entire world.  I will say that over and over again because it is the truth.  I can always count on them to help pick up my spirits when I am down.

Anyone who knows me, knows I am a talker and can often ramble on sometimes .  Usually people have to tell me to shut up LOL   With this particular flare, I have withdrawn dramatically to try to get rest and battle to regain control of my own body.  I’ve even seen personality changes from my usual funny self to some crabby person I don’t even recognize.   (I didn’t even know that mean person lived in me, but apparently it does).

It’s amazing to me how my online friends just seem to know when I need a hug and send me words of encouragement.  I appreciate them so very much.   We aren’t alone in this disease.  I need them just as much as they need me, sometimes more so.  I think they have all gotten to know me so well, that they sense when “something” isn’t right.   I have had so many message me to inquire if I am ok, etc .  It is just phenomenal at the amount of caring we have for one another online.  People we have never met, but we share this common bond- Lupus.

I recently celebrated my 43rd birthday.  People around the world took time out of their busy days (and on Mother’s Day too, mind you) to wish me a Happy Birthday.  That’s pretty inspirational J  Friends sang Happy Birthday to me in different languages.  Some left beautiful pictures for me and others left me messages to make me smile.   You all really made my day special.  Thank you so much for that.

Rather than wearing purple for World Lupus Day this year, I chose to honor my international friends by wearing Orange, the international color of Lupus Awareness. They are the ones who have helped me through this nasty flare the past few months.  I did put some orange and purple hair extensions in my hair too because I didn’t forget about the Lupus patients here in the US too, they deserve recognition as well, they were there for me too in my time of need.  Last year, I wore purple…this year was orange.  Perhaps maybe I will alternate the colors each year.  Maybe as each year passes, I will get better at color coordinating BOTH colors together somehow.

While I can only hope that this Lupus flare comes to a close in the near future. Maybe it will, maybe it wont- but its wonderful to know that I have such an amazing group of online friends from around the world who will help me get through it.  Thank you so much for all that you do for me from the bottom of my heart.  Love you guys !

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