My Story

Diagnosis: Original Diagnosis at Childrens Hospital in Seattle, Wa. By Pediatric Rheumatologist - Age 9 – JRA

Re-Diagnosis at Arthritis Society by Dr Mallison & Petty Pediatric Rheumatologists – Age 14

(Sjogrens Syndrome, Vasculitis, Polymyositis, Raynauds Syndrome, Lupus (SLE) & Rheumatoid Arthritis)

Mixed Connective Tissue Disease

About My Diagnosis:

I have always considered myself very fortunate in my early diagnosis. I was lucky I had a mother whos best friends little sister had JRA; and realized as I walked late, at 18 mo. Old that my knees also looked like the little girls knees and my mother inquired if I too might have JRA. Unfortunately in 1978 there was not as much understanding about Rheumatic Diseases, and the pediatrician blew her off as paranoid.

As the years went by, my mother, kept close watch on my health. By age 7 she noticed the nodules & calcium deposits forming on my hands and I was always complaining about being tired and many other things as well. As my parents had divorced by then, and I was living with my father at the time; she brought this to his attention. He too blew her off as being paranoid. In a last ditch attempt, she plead her case to my stepmother, who while not her biggest fan, was a charge Orthopedics RN at Seattles Queen Anne Hill Group Health Hospital. As luck and fortune would have it, we had a family gathering the next day, and my cousins and I sat watching tv on the floor, something thats always been uncomfortable for me to do; she noticed when we were called to eat, that while everyone else leapt up quickly. I, however, had to roll over onto my right side, unfold my legs and slowly pull myself upright. In that flash of a second, she realized that I looked exactly like her senior patients in the Orthopedics ward and realized without a doubt my mother was not paranoid. She was right.

I have every test known to man done from PFT's, CT Scans, X-Rays, Blood Work, EEG, EKG's and more. The pediatric rheumatologist at Seattle's Childrens Hospital confirmed my mothers suspicions. Although she admitted upfront and right from the start, she was unqualified to diagnose me with what she was positive I had, and therefore could only give a temporary diagnosis of JRA and encourage my father to take me to Vancouver, BC to be tested by the top Pediatric Rheumatologists in the world, Dr. Mallison & Petty.

Sadly, family politics took a front seat to getting a proper diagnosis, and I struggled through medications, doctors appointments & Physical & Occupational Therapy, where every adult in the room ignored me and talked to my RN stepmother.

At 14, due to the same family politics, I returned to my mothers care, who lived in Vancouver, BC. The first thing on her to do list was to make an appointment with the Vancouver Arthritis Society. It took only moments for them to confirm exactly what the Pediatric Rheumatologist (who had done an internship with Dr Mallison & Petty) had suspected. I did not have JRA. I had (and still do have) Mixed Connective Tissue Disease – which includes: Sjogrens Syndrome, Raynauds Syndrome, Vasculitis, Polymyositis, SLE (Lupus) & Rheumatoid Arthritis.

I couldn't afford post secondary school and with all the disease & medications causing brain fog, scholarships were difficult to aim for.  I ended up doing entry level work for a number of years, tearing muscles, flaring joints and ended up making too many visits to the ER & clinics for emergency cortisone shots to the knees, oxygen masks from coming in with an oxygen sat. level of 85% and once intestinally hemmoraging.  The work caused flares, flares caused me to have to take time off work (or risk another trip to the ER), time off caused stress, stress caused a new flare...and thus the cycle continued with employers unable to understand what was going on.  I felt depressed and worthless.  And then I hit rock bottom.  I couldn't walk after my shifts - and it was my body's way of saying enough is enough.  You CANNOT do this to yourself any more.  But if you can't work, what do you do?  

I had no choice but to go onto medical leave, fighting people who were cruel for an amount that barely paid rent let alone bills.  My depression worsened as did my esteem.  Through sheer grace I found something I enjoyed and was good at and was a viable job I could do.  I'm still fighting to get it off the ground and many say its a pipe dream - but I have to be able to be able to contribute to society somehow - I need to be able to work and do SOMETHING POSITIVE to fight the feeling of uselessness, worthlessness and other negative thoughts.  I'm still fighting to become a photographer - one that focuses on primarily pets/animals & scenery - although for now I will do people to help pay the bills.  The better I do, the more I can give back and I dream of being able to eventually relocate somewhere warm that my joints will appreciate far more.  I dream of a cure, I dream of having celebrity spokespeople who have the clout to help us raise awareness, hope and fight for a cure, I dream of a future that I am doing what I love without harming my health in a place thats beautiful and supportive.  I dream a lot and when I feel at my worst - I hold on tight to those thoughts - and they keep me afloat.

What I would like people to know:

Being a child with an autoimmune disease is not the easiest thing and I think the only thing harder is being the parent of a child with an autoimmune disease. I have dealt with teachers who thought I was “lying”, “faking it”, “lazy” etc. They didn't see that as soon as I got home, most days I fell into a deep exhausted sleep. They didn't see how hard I constantly pushed myself in a strive to be “normal” - causing more harm than good and nothing but more pain and more fatigue. They didn't see the tears I cried in frustration as brain fog set in, or I fell asleep in class from exhaustion, or as I struggled to do any physical activity anyone else my age found “easy”. One would think though as you get older, that it gets easier. But it doesn't. Instead of teachers its bosses who don't understand or care about limitations or needing time off to heal. Boyfriends that weren't able to cope with dealing with someone with a chronic autoimmune disease, the hospital visits, the specialists & testing, the medications, the fatigue and more. The friends who wanted to go out and conquer the world – while I couldn't get my head off the pillow. I wasn't able to afford post-secondary school. So I started into the wonderful world of entry level dead-end jobs. It was a constant struggle maintaining a perilous and vicious cycle. Work too hard and end up injuring yourself, requiring time off. Time off equals lack of finances, which causes stress, which causes more flares & injuries. I continued to chase my tail until I literally was in tears and could not walk. I had hit rock bottom.

I wish those who don't have a autoimmune arthritis would remember that some days are fantastic and we think we can conquer the world, and other days we can barely lift our heads off the pillow. Most days, its a balance between the two with peaks and valleys. We do not wish to “leach off society” or be or feel “useless”. We do not desire deep vats of pity. We simply want to live & love life pure and simple and be loved for who we are.  I wish teachers, doctors, emergency personnel, dentists, business owners would know and learn more about this disease to make it easier for those in this next generation growing up and struggling with this disease.  Above all of that, I pray each and every day for a cure to be found at last for this ancient disease so that no other children or youth have to go through all the things I have had to.  

Positively PAWS-itive

As I was sitting her crying over the case about Lennox (for those who dont know about poor Lennox's plight I urge you to go read it and help fight on his behalf http://www.savelennox.co.uk)  I was thinking alot about my four legged fur-babies.

Now how, you ask is that in any way related to my MCTD?  Easy.  I am single, I have no children and my family live far away.  I have friends who are there for me here and of course online (and my family are all online too and are also supportive) as well that are supportive and help in ways they know how to, for which I am thankful.  However, when I have no spoons left and the world seems bleak, I have no spouse to rouse me or children to snuggle with..... I have my four legged wonders.  My Paws-itivity on four paws.

My Lisa-Lee & Poly-Ana as well as the French Bulldogs I help out with as well, are my motivation to, even when the world is dreary and I dont think I can push through the day, to keep going and keep pushing.  When I have a lousy day they are the ones who sit patiently by my side and snuggle me and purrr til I feel at ease again.  Or make me laugh until I cry, and they sit there while I sob in frustration and fear and never say a word, only smother me in sloppy kisses.  They remind me that even though I feel like Ive been hit by a mac truck, that they are relying on me and counting on me to make THEIR day bright.  So I stagger out of bed and feed them and cuddle them, I let the pups outside to play and sit on the steps taking photos of them playing in the sunshine because they too rely on me to make their world safe and bright.

I would highly recommend to another like myself whos single, and somewhat alone, to invest in adopting a pet and giving it a second chance.  Cats dont take much work to care for and they will help keep your world balanced when its topsy turvy.  Or even volunteer at a shelter or rescue, many of them need professional cat snugglers!  Dogs are a little more work so I dont recommend it unless you know you have the energy level to give one the care needed with walks and such.  I am lucky with helping out with the puppies that I am able to let them out into the yard to play and throw balls and am not the one who has to walk them outside.

So that is one way I help keep myself thinking PAWS-itive when my world seems dark due to my Rheumatic Disease.....My furbabies, who love me no matter what, do not see me as sick, that do not judge.  They rely on me to make their world right, and comfort me when I'm in need and I cannot imagine my world without them in it.

Sending much love and gentle hugs and of course extra spoons to all.  Keep Paws-itive!

A Walk In Someone Else's Shoes

Imagine for just a moment that you are once again a child. Your life stretched out in front of you. Your world is full of dreams of what is yet to come. The sky is the limit. And, although it has its shinning moments of tribulation and social awkwardness, life is generally good. There is nothing you cannot do; all that you really have to do is decide what you want to become. Ah, life is grand.


Now imagine for a moment that you are told that you have a rare invisible illness. You are no longer like every other child playmate or relative of yours. You are different and you have no idea why.

Your world now revolves around doctor appointments, medical exams and tests. You are told you are no longer able to do the physical activities you once enjoyed; like running or playing. You are in constant pain that no one can see the cause of. People tell you that you whine a lot and to suck it up. You have no energy from the pain; you cannot figure out why all you want to do is sleep all the time. People just call you lazy. You are given medicines and told to take them. You don’t understand why, you just do as they say. You can’t figure out why it’s so hard now to remember the simple things. You think you are going insane. And often times, even worse, think you are stupid.

No, you don’t have some bizarre illness that no ones heard of. You have one that everyone has heard of, and they think they know everything about it, and yet, know very little. You have a rheumatic illness.

Most people don’t realize that billions of children world-wide have this disease. They do not realize that it doesn’t just cause “achy bones” that a few Tylenol can help ease. They don’t realize that there are over 115 different types of rheumatic illnesses; all of which affect the body in various ways, and not just the bones. They can also affect organs, muscles, skin, and other various body parts. Thankfully, some will out-grow their rheumatic illness; as in the case of Jr. Rheumatoid Arthritis. Many more, however, will not, and will suffer on through teenage years and into adulthood; where they will continue to be misunderstood.

It is difficult for anyone who has a chronic illness, and doubly so to have it as a child or young adult. It makes it even harder when you are constantly bombarded by people who think they know the magic cure-all pill and people who think you are a liar because “you look just fine” to them.

I know what this is like because I was diagnosed at age 9 with Jr. Rheumatoid Arthritis in Seattle. I was re-diagnosed by the Arthritis Society in Vancouver, BC with Mixed Connective Tissue Disease; which is Rheumatoid Arthritis, Polymyositis, Sjogrens Syndrome, Vasculitis, Raynauds Syndrome & SLE (Lupus) at age 14. I was one of 12 children in Canada with this disease; and only one of 50 in North America.

I went through the barrage of X-Rays, CT Scans, EEGs, EKG’s, vast amounts of blood work and more to get this figured out. I had to deal with Rheumatologists, Physiotherapists, Occupational Therapists, Ophthalmologists and more specialists than I can shake a stick at. That was before I even turned 15.

I had to deal with teachers who couldn’t understand why I had to take time off school to constantly be at a doctor appointment or due to bed rest; or why I couldn’t do things like P.E. I had to deal with peers who couldn’t comprehend what I had to deal with. It made for a fairly lonely existence in school.

And if I ever thought that I had it bad, my mother had it worse. She knew when I was 18 months old that I had arthritis. She talked to my pediatrician about it, to which he replied only old people get it, she was just over reacting. When I started getting calcium deposits on my hands and toes; she again voiced her concerns. Again, no one listened. At age 9, I was living with my father and step-mother in Seattle and my stepmother was an Orthopedics RN. She realized after talking to my mother that she was right, something wasn’t quite right. She realized watching me with my cousins that when I sat on the floor, I couldn’t get back up on my own. I had great difficulties doing so. In fact, I looked like one of her senior patients trying to get up. So she started pushing the doctors to run more tests. I was one of the lucky few. Many go undiagnosed by the medical professionals and ignored by their parents as well. Pain is chalked up to “growing pains”, the exhaustion is due to being “lazy” or lack of proper sleeping habits. It’s often not until they are young adults that they find out what they have.

As adults, they will likely face much of what I have. Those who cannot afford a post-secondary education will likely end up doing entry level work and end up doing more damage to their joints. They will deal with bosses who have little comprehension (and often really don’t care) about why they have limitations or have to take time off work. They will deal with the brain fog caused by flare ups and also by some of the medications. They will deal with a vicious cycle of over-working their body to the point they have to take time off, causing them to stress out about finances, which causes their health to become increasingly worse. They will deal with all the psychological issues that accompany having an invisible illness; as well as be misunderstood co-workers and friends who don’t truly understand what they are going through; and often call them lazy as well. After all, it can’t kill you right? Wrong.

Then as a last resort, when their bodies finally hit rock bottom, after numerous trips to the hospital and doctors offices; they will try to apply to some government agency for help.

After all, isn’t that what they are there for? There they will deal with professionals who also have no idea what their illness is about, and once again being stigmatized as “looking fine” and just “being lazy”. Some will even be called liars. Some will not be able to work again. Some will just need aid being retrained to do a more appropriate job and then go on to lead independent lives again.

All of them will need understanding along the way from diagnosis right on through til the day they die. They will need medical & dental professionals, employers, teachers, and even government workers to understand what a rheumatic disease is and how it can affect a person. What their limitations truly are; and what their needs truly are from each of them.

Medical professionals need to be able to spot the zebra in the herd of horses and quickly diagnose children with rheumatic diseases and stop chalking it up to always being something else because kids can’t get it. Dental professionals need to understand some rheumatic diseases cause mouth decay and abscesses and it’s not due to lack of brushing. But there are ways to prevent some of it. Teachers need to understand the limitations physically and even mentally that children (and yes even young adults returning to post secondary) have; due to medications as “brain fog” caused by flare ups. Employers need to understand that there are limitations and work with their disabled employees. Many want to work, they just need the opportunity; along with the proper work place. Government workers need to stop judging them as lazy because they aren’t on crutches or need a guide dog. Just because things look fine on the exterior doesn’t mean there’s not trouble brewing under the surface that you cannot see.

And last but not least, YOU, the friends and family; the neighbors and co-workers of those with a rheumatic illness need to educate yourself as well; which is why I am writing this to begin with.

They need your understanding and support. They don’t need to be mollycoddled; nor do they want pity. Most will over-compensate and overdo things just to be “normal”. They need you to know that some days, yes they will feel spry and fine; and some days they will not have the energy to lift their heads off the pillow. They need you to understand some days they will feel blue as the sea and others angry at the world, and sometimes just fine. They need you to understand some areas they cannot live in due to climate – even if it breaks their hearts being far from home. They need you to not think that it isn’t a serious illness that can put them into the hospital, that it does affect organs and other body parts than just their bones. They need you to be supportive. And they need you to help educate others, so that eventually, there will be no misconceptions. They need you to help raise awareness to that everyone knows about this disease as much as they do about other diseases like cancer or diabetes. They need you to help fight for research to be done on this illness that has been around since the dawn of time, so that one day; there will be a cure; and maybe; just maybe, the next generation of children won’t have to go through what we did.

15 Things Not To Say to Someone With RA....

....or any other auto immune rheumatic disease for that matter..... I saw this article forwarded to me on FB
http://www.health.com/health/gallery/thumbnails/0,,20468155,00.html
and it has some great ones listed here.  As I have had my MCTD since age 9, I have heard 90% of every bad ignorant and just plain STUPID thing there is to hear.  What are some of your least favorite things to hear?  What are some things youd LIKE to hear instead?  Lets make a list and maybe together we can help bring a little more awareness as well! 

Wear That You Care - February 28th

For many of us with Rheumatic Diseases, we have Rare Auto-Immune Diseases - So be sure wherever you are on February 28th to show your support of not only your fellow Rheumatic Disease friends/family but also all the other millions of people out there who also suffer from Rare diseases, like ours, that have no cure.  Be sure to go to the website and also cross-post this! Please also be sure to share your photos from your own Wear that You Care day! I'll be sure to share them here! Lets see how many photos we can collect and show our support for eachother and also all the others out there with other rare diseases as well! 

I was 9 years old when I was diagnosed with MCTD - and I was one of 12 kids in Canada and one of 50 in North America with my disease.  I know first hand how MUCH this support TRUELY MEANS to all of us! Please be sure to share this, and participate in this and show your support and ask others to also do the same!

Spoons & Things.....

I know many people are curious, not only about the spoon theory but also why there are alot of spoons showing up in peoples profiles right now....so here is the answer to your question for those who are curious....
Why Are There Spoons On Facebook & Twitter?

I hope to see in all my friends & families facebook & twitter accounts, spoons showing support of all of us "spoonies" out here struggling in silence.

Remember February 28th is also World Rare Disease Day and as someone who has fought a Rare Chronic Invisible Disease since age 9; I hope to see A LOT of support being shown for all of us who are in this boat together, no matter what the disease is.

For those who forgot what the spoon theory is you can find it HERE
I hope everyone remembers to share it and even if you are blessed with being perfectly healthy, take the time to read it in honor of some of us who arent, so you can better understand what we go through every moment of every single day.

In other news I also whipped up two new storyboard style photos I'd like to share, to remind others, of a few Rheumatic Disease facts.....It is not "an old persons disease".  Rheumatic diseases affect MORE canadians than HEART DISEASE, DIABETES or CANCER.  1 out of 6 adults has a rheumatic disease --- 3 out of 5 of those adults are under age 65.  There are OVER 100 Different types of Rheumatic Diseases.  Most GP's do not even get ANY training in rheumatic diseases so often times it takes way too long to become diagnosed.  1 in 1000 CHILDREN has a rheumatic disease. THESE are the faces of Rheumatic Diseases.  It is NOT an old persons disease!

Wishing everyone many gentle hugs & extra spoons!

The Spoon Theory - A Must Read

For years I have tried to explain to others what living with my disease is like.  It is a rare chronic invisible disease so that is difficult.  What compounds it even more is, as I have MCTD (mixed connective tissue disease) is that it contains 6 rheumatic diseases in that one name:  Vasculitis, Polymyositis, SLE (Lupus), Sjogrens Syndrom, Raynauds Syndrom and Rheumatoid Arthritis.  The only word people recognize is .... Arthritis.  Instantly immages of their grandparents creep up and suddenly I'm someone who whines because isn't all that Arthritis is is just a few minor aches and pains?  It frusterates me to no end.  Whats worse are the suggestions.  Have you tried this or that new miracle cure all? Um....you did understand its chronic right?  So anyhow, most people, even those close to me who have been in doctors appointments or read texts about my diseases, never truely understood what I was going through, what I DO go through every single solitary day.  And have since I was 9 years old. 
It is hard to explain as a child, young adult or even as an adult now in my 30's why I just cannot do some simple tasks or why I cant go out to a night of karaoke even though I would love nothing more.  It is something very difficult to put into words for those who dont have a disease like this to understand. 
Then I found this amazing article on....The Spoon Theory (you can read the article here and I highly recommend you do before reading further.....The Spoon Theory )

When I read this I almost cried tears of joy.  I know exactly how she felt trying to explain.  Ive been there.  Her explication of this life we live, this battle we fight, makes it so easy for others to understand.  I have been known for "running out of spoons" and writing IOUs for many spoons for copious amounts of time on end until my body just shuts down entirely and I end up in hospital.....again....or on bed rest....for another few weeks....again..... I am single so its even harder for me not to run out of spoons.  I have no one to share the daily workload with.  Some days I have one or two extra spoons, but most the time by the time I curl up to sleep I have none left.  I've learned, like the author of this amazing analogy, to try as often as I can to carry extra spoons when I can and to plan meticulously every day what I have enough energy to do.  Some call that being anal retentive, but without it you run out of spoons before lunchtime.  And it doesnt help that the number of spoons changes by day and little things like weather or a fever can affect how quickly you can go through those spoons doing such simple tasks.  I hope everyone reads and shares this article, especially if you know someone who has a rheumatic disease, or if you have one yourself, it helps you to be able to exlpain your world a little bit easier. 

Wishing you all extra spoons in all your endevors and many gentle hugs!

Happy 2011 Everyone!

Well, 2011 is finally here at last and I want to firstly thank all of you who take the time to stop in and read my blog!  Secondly I want to say I wish you all a low pain - pain free year and I hope that maybe this year, they will finally come closer to finding us all a cure.  

The holidays have been stressful and chaotic for sure!  Its been hard trying to keep up both with the puppies, opening my new photography business & of course attending functions as well.  Thankfully I also am able to get a bit of rest now and things will be resuming to their normal pace after today.  In mid-Dec. I got my new Rebel camera for my photography business and went out to take some photos here in Medicine Hat.  One of my favorite places to go is to Vetrans Park.  As I was editing some of these photos I took, I pondered why it is I love taking photos of these trees, even when they are barren in mid-winter.  I finally figured out, it was because they remind me of myself.  Their long limbs may be gnarled, twisted and tangled but yet they remain strong and noble looking and full of character.  And during the other 3 seasons of the year, they are beautiful, breath-taking, and vibrant and full of life.  So keep these beautiful trees in mind the next time you feel as barren and gnarled as these magnificent trees, remember that come spring, summer & fall, they are colorful, vibrant & full of life; just as we all are on our good days.  Wishing you all a magnificent new year!

Winter Time

Summer Time

Autumn