Rheumatoid Arthritis

All posts tagged Rheumatoid Arthritis

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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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]

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