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Wednesday, 11 March 2015

Sjogren's Syndrome and TMJ Dysfunction: Bad Companions

This year I was finally able to see my chosen dental surgeon - one who specializes in oral and maxillofacial surgery. After 30 years of rheumatoid arthritis (RA) and hearing again and again over the years that if my jaw was sore I must be grinding my teeth, I found out the real truth - RA had severely damaged my TMJ (temporomandibular) joints. Since the damage happened over many years, the adjustments that my body made in response to the joint damage have left me with good function, even though a CT scan shows a much different picture.

It took a year to get the initial appointment and I expected to be on the surgeon's list for arthrosopic surgery for another year but, since the doctor was unexpectedly given more operating room time the process sped up and I had the procedure early in March. 

You might wonder what happens in this surgery. Basically the doctor uses a tiny camera inserted through an incision in front of the ear and just above the jaw to see the joint, and then uses small instruments inserted just above the camera to remove damaged cartilage, smooth rough surfaces, and clean the joint space - even to the extent of repositioning the disc if needed. 

You would have thought that a smart patient with Sjogren's Syndrome would have a clear idea of what is necessary for good self care when they headed to a hospital for jaw surgery. I thought I was well prepared but I was remembering other surgeries on my hands or feet - the extremities where a nerve block is the obvious way to control pain. 
I'm sure my eye was this red

Of course when the operation is on your face that strategy won't work, and the doctor is likely to want to make sure that you keep breathing regularly while he works. As a result the doctor started with a very effective decongestant which dried my whole sinus cavity very thoroughly.

I took a tiny sample of Oral Balance with me for dry mouth - it was a lifesaver, as was bargaining with the anesthetist to be able to use some Evoxac prior to the surgery. I was afraid that a breathing tube combined with a dry throat would feel dreadful.

Given the way I felt coming out of the anesthetic, I should have taken the whole medicine cabinet of over-the-counter products I normally use along with me for afterwards.


my usual eyedrops

My sinuses were so dry that I was desperate for saline spray to help the with headache and pain. Thank goodness for the Evoxac that helped my mouth and throat. Who expected the effect on my eyes to be so devastating? After I came out of the anesthetic I was unable to shut my right eye - the muscles on the right side of my face would not respond for hours after. That meant my eye was agonizingly dry, and I had no eye drops with me. 


Where was a saline spray when I needed it?

At least I had some dry mouth gel with me
So the moral of the story is - if you have Sjogren's and need to have an operation involving a general anesthetic, and the doctors express concerns for your airway - take the products you commonly use to the hospital with you so that once you are reunited with your belongings you can use them. The hospital was able to get eye drops, but not fast.

The first title I thought of for this blog post was "Don't Leave Home Without It" but it needs to be Them. I plan to restock my purse to be ready for anything. 

At the Arthritis Alliance Symposium one of the rheumatologists needed eyedrops suddenly. 
What did she do?
Asked a patient.
She had a vial in minutes.

Sunday, 1 March 2015

Insiders View of a Support Group

This post is composed of comments from members of a private support group I have been a member of since before Google was a search engine. It's valuable to have support, and it's great to be able to increase your social support network online. The hardest part is finding a group of people who are compatible.

Julie's comment
I found this Group by accident.  I was searching for something else and a little box came up on the right hand side of the page advertising the RA Yahoo Group.  I read a little about it and decided to join. I lingered around for awhile reading the messages and then started sending messages and questions.


I am not one to join any kind of support group, but this group was so interesting to me.  It was nice to find others that suffered with the same auto-immune disease and who really understood everything.  Each of you have contributed to my education of this disease and just listened to my whining - giving good advice.  Others think they understand this disease, but they really don't. The only people who really understand are people who also have an auto-immune disease.


Thanks to each of you who have contributed.  Everyone on this group is so very nice and I thoroughly enjoy knowing you online.  I just wish we could all meet one another in person.  This group is also a special place for me.  Thanks for letting me be a part of this group and thanks again to Penny and Annette for overseeing everything.  And - Thanks to all of the members for being so supportive - not only about RA - but, about everything.  
Penny, the group "owner"
I’m glad I invested in this group too, it’s such a special place for me and you all are like family. I do enjoy our time together each day so much and as you said I’ve also learned a huge amount. I guess there are many things that the doctors either don’t have the time to explain or many things that they simply have no idea about because they don’t live it. And to think when I first joined here, I really didn’t think I needed a support group. How wrong can you be?!  
Roze
I am happy you found this group too.  I have learned so much from you and always appreciate your sharing.  I think our group is unique.
Maggie

I have to say I love this group a lot. I am not in any other group. Don't need to be as everyone here is just the best and I have learned a lot from this group.
I would be lost without all the support I get from everyone here. I class them as my second family  xx.uk 
Grammy 
I'm with you Maggie.   This is my only group as well.   Just feel like I'm always behind lately since shuffling kids more often

Our Doctors

Roze
My idea was to make a list of things that docs could share with their patients that we had to learn from each other, and/or things that would make our lives a little easier without having to go through trial and error.



Penny
We were talking about the things that we’ve learnt from being in this group, versus what our doctors have taught us. I said to Roze I wasn’t sure if the reason for the lack of info from the doctors was due to lack of time, or lack of living with RA themselves.

Polly
I think they know what the "words" mean but they don't know what the "experience" is.  For example, I don't think my pulmonologist (as good as he is) really appreciates what it is like for me to have the lung conditions and RA running around my body and the Fibromyalgia kicking in some pain here and some pain there. They seem to live out of their textbooks and we live out of our life's experience.

Benefits
Maggie
I discovered from all of you, for example, that I was not lazy.  In the beginning, because so many treat you like if you'd just do a little exercise you would be all well again, and you all taught me that my experience was real and you validated that.  I think validation is the best medicine. 
Grover
Penny


Me too Maggie and I’m not lazy either. I do have a group of girlfriends online, we all met in a chatting mums group when I first went online about 15 yrs ago, and many of us have now met in real life when we had a meet up in Dublin. We trust each other implicitly like a group of sisters and have seen each other through a myriad of trials and tribulations and through a ‘lot’ of laughs. They are like family and so is everyone in this group to me.


Maggie
Like you I don't tell my husband half of the things I worry about. He has enough on his plate.
Penny
That’s a good valid point, sharing things here takes some of the burden off our partners I’m sure of that. 
Roze
That is a considerable benefit to not have to share with husbands when you can share with us.  Good point Julie

Penny 

Well I have one idea right away Annette, and that was thanks to you. You mentioned the silver ring splint company to us, and that led onto me not only getting my own splints made, but in being referred to an OT, something my rheumy (not one of the ones I’ve had over the years), had ever mentioned despite me already having finger deformities. These things should be discussed early on in my opinion and not after the damage has already been done. Prevention is always better than cure









Silver ring splint from Digisplint.com above and on my finger at left




Red
Having support is a good thing... I knew I needed it and feel blessed I have all of you here... Even if I don't post as often as I should...

Monday, 2 February 2015

Third Annual Rheumatoid Awareness Day

February 2nd was Rheumatoid Awareness Day. You can find more about the history of this awareness campaign here at the Rheumatoid Patient Foundation.

Happy 3rd Birthday!

This symbol of the day - the groundhog and the tie-in to bringing rheumatoid disease out of the shadows seems particularly poignant.

From Rheumatoid Patient Foundation
 
Every day when I wake up in the morning it feels like Groundhog Day. I don't have the same bed and same clock the way Bill Murray did in the movie, but the same aches, pains, fatigue and deformities are there every morning when I wake up. Despite my carefully cultivated optimism and the best efforts of my doctors and myself at the best care, in my case rheumatoid Disease doesn't go away and doesn't give up. 

Compared to people who developed RD earlier in their lives, in particular the mothers of two friends, I am a glowing picture of  health. It's obviously true that treatments are better now. We used to see many people with permanent deformities and in wheelchairs in Rheumatologist's offices which are now full of patients who look quite healthy. The effects of RD are less visible, and rates of some types of joint surgery are decreasing.

In my volunteer work as a Patient Partner, which is a program in which trained patients teach medical students about musculoskeletal problems, the person I am most often partnered with is almost the same age as I am but with a later onset and more effective treatment it is more of a challenge to see her visible symptoms.

We need to increase awareness of Rheumatoid Disease and the effects on patients among the general population.

We also wish there were a campaign to educate family doctors to recognize RD faster. The opportunity to have it go into remission is a short period of time after it begins. They call that the window of opportunity. If even twice as many people could achieve remission the costs of RD would be much less.

The other area that needs attention is research funding.

To use statistics from the US as an example there are 50 million people with autoimmune disease and 11 million with cancer in the population.  Autoimmune disease is the poor cousin in this equation.  Cancer is estimated to be receiving $7,762 million this year (2013) compared to $872 million for autoimmune disorders.   


Autoimmune disease is blue. Research money shows on the right

 This chart compares cancer incidence and funding with autoimmune diseases. You can see how unbalanced this is. If we had even half as much money for research in autoimmune disease as there is  for cancer we could see huge strides forward for new and more effective treatments. Maybe the new drugs would even be affordable.

So today is the day to let more people know about Rheumatoid Disease. "Not your grandmother's arthritis!"

Here's a link to last year's Rheumatoid Disease Awareness Day post.

Wednesday, 7 January 2015

Power Equality: Not Even on the Radar

Late last year I was pleased to be invited to attend a conference called "Reaching the Summit: Leading the way from Interprofessional Education to Practice". Having patients included with educators and practitioners meant that the healthcare stakeholders sitting around the table were representative of more of the members involved in the health team.

It was a little disconcerting when I looked back at the list of Summit Registrants prior to writing this post and saw that under the title and the occupation columns the patients were all listed as "Patient Guests" in both columns. That seems to imply that our place is not secure - maybe it isn't a given that patients will always be invited to participate.


We're making the right connections

At the event a large part of the afternoon was spent in breakout sessions, each one with a patient representative. The teams were composed of people working in hospital administration, in medical education, clinicians, allied professionals and, as at the IDEO Design Challenge, the variety of opinions led to strong and useful conclusions and strategies.

At one point in the session I commented that the very words 'inter-professional collaboration' on their own seem to exclude patients. With that as the conference description I did not feel originally that I belonged in this discussion.  It was wonderful to hear that others at the table agreed with me. In fact the facilitator of our session had written a paper on that topic titled Interprofessional jargon: How is it exclusionary. Cultural determinants of language use in health care practice!

With exclusion on my mind, I transcribed this sentence from a webinar on YouTube on the topic of Patient and Family Engagement:
"In summary, we can think of patient and family centered care as the umbrella term for the approach or, as then is implicit, the container concept that encompasses the elements and arranges the activities that come to define patient engagement, towards the ultimate aim of improving patient experiences and outcomes."

It does not sound like "Let's engage the patients!" language to me.

Here's a definition of Patient Experience from The Beryl Institute:
"The sum of all interactions, shaped by an organization's culture, that influences perceptions across the continuum of care."

I wonder if healthcare organizations give much thought to engaging patients and families so they can provide input and influence decisions before they are made.

                       It takes co-ordination to make all of the components work together

This blog post by Dr. Matthew Katz, on the Mayo Clinic website, E-Patients Deserve E-Doctors: Addressing the Needs of Both to Make Healthcare Better for Everyone makes great points.  Here are a few quotes from his excellent post:

"Empowering patients and doctors ensures they can work together. If patients and doctors don’t stand up for themselves, other stakeholders  (e.g. hospitals, insurers, industry) may unwittingly make things worse.

Thoughtful, vocal patients, caregivers and doctors should stand together. Even when we disagree, we can respect our differences while working toward solutions, both in clinic and for the health care system. We need each other. And if we support each other, the entire health care system will be the better for it."

I encourage you to read the whole post. The idea  of doctors and patients as natural allies seems like the right choice to make.


Wednesday, 31 December 2014

What Next 2015?

Last year on New Year's Eve I was thinking about what my hopes were for the coming year - they were simple but seemed like stretch goals that would take years to achieve.

My ambition for 2014 was to be a Medicine X ePatient Scholar and to have a Walking Gallery jacket done by Regina Holliday. Both of those things happened in 2014, and I appreciate and would like to thank my social media and online friends with being an amazing help throughout the year.

MedX was inspiring, exhilarating, intense and a huge chance to grow as an advocate and connect with like minded people. The jacket was delivered to Palo Alto for the first day of the MedX conference. So much happened in those four short days.

Here's a picture of the jacket - it tells the story of my first years with RA and with no diagnosis.

 
Walking Gallery jacket by Regina Holliday - It's A Mystery
 
"It's A Mystery" is inspired by my life-long love of mystery books I think, especially those from the "Golden Age" of mystery. The front covers of the books from that time, and the mood in them was unmistakeable. That's the Toronto skyline in the background, with the CN Tower acting as the tent pole, or the beacon.
 
The doctor is a shadowy figure - if he knew the diagnosis it didn't help me much. His final piece of advice: to take 10 aspirins a day (see the Bayer's Aspirin bottle) and come back in six months, just led me to see another doctor when that didn't help. Regina did a great job of bringing those times to life.
 
There I am lying on the ground with huge fatigue and two little boys, while my feet are so sore I can hardly walk. At the time I credited Diet Coke with the sudden weight loss. The doctor's explanation for the pain, "You're a busy mom."
 
This disappointing beginning to a story of life with chronic illness was what caused me to start to question my role as a patient and my relationship with doctors. With the story laid out so clearly on my back, I can tailor my advocacy message based on the interests of the people at conferences who see the jacket.
 
Since I've been home from MedX I will swear that the idea of the "MedX halo" is not a myth. I've been to six rewarding and interesting conferences since then, and have three scheduled for 2015. Working hard to learn more and advance the idea that the patient voice should be included at the decision making level in health care has been satisfying and the rewards outweigh the efforts. 
 
We're a long way from seeing inclusion as a common practice, but if we work together persistently we can advance change. I like this Margaret Mead quote:
 
"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has."
 
In 2013 the National Forum on Patient Experience did not include patients. In 2014 there were many patients. That was a success.
 
In 2015 there is a conference coming up called Canadian Patient Relations Conference: Making the Invisible, Visible: Hearing the Patient Family and Caregiver Voice. There will actually be one patient in attendance - giving a keynote speech. That should be enough for anyone, right?
 
Being a member of the Society For Participatory Medicine is an excellent way to attempt to keep up with the issues of participatory medicine and patient empowerment.
 
MedX ePatient Scholars & Student Leaders by @Hurtblogger
 
The Society for Participatory Medicine is a 501(c)(3) not-for-profit organization devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.