Archives

All posts for the month August, 2011

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…~

%d bloggers like this: