Tuesday, April 17, 2012

The Real Faces of AutoImmune Rheumatic Diseases for Rheumatic Disease Awareness Project

Last summer, I decided I really wanted to do something special in my own community to help to raise awareness about the disease I have had most of my life.  Unfortunately, things did not go quite as planned, and now that I am in my new home, I would love to try doing this again - but with a few changes.  One of the changes is that instead of just being a summertime project, I am going to extend this until December 31 2012.  This should give enough time for everyone to be able to participate on a wide range of levels.  I should also mention, I do have no qualms (and in fact would really enjoy) working with other photographers who would like to participate in this, as well as those who would like to try to put something similar together in their own areas.  The more people involved, the more awareness we can raise!  Now....about this special photo project!

I have had a rare invisible chronic auto immune disease since I was 9 years old called Mixed Connective Tissue Disease.  So this project is something esp. near and dear to my heart.  This disease, like other Chronic AutoImmune Rheumatic Diseases are invisible and well...chronic.   They strike anyone of any age, creed or gender at any time.  It strikes more people than Diabetes, Cancer & Heart Disease - and yet people care and know less about it than any of those big 3 illnesses, not to mention a million and one misconceptions about what an AutoImmune Rheumatic Disease is.   I would like to help put a change to that, help raise awareness & help bring hope to those of us suffering from it and help us to FIGHT for a CURE! Now I do this every day with everyone I meet online and in person as it is, however this summer, I'd like to step things up a notch or three with YOUR help!

So what is my special project to help raise more Rheumatic Disease Awareness?

1) I would like to do another compilation of photos of those of all ages, races, and genders suffering from chronic auto immune diseases - remember Rheumatic Disease is an Umbrella Term for over 100 diseases!!! So this applies to a LOT of people!  If you have one - please contact me!  I would like to compile these photos into a LARGE book titled "The Real Faces of Rheumatic Diseases"  to help raise awareness.  A Photo is worth a thousand words - so hopefully it will help get our message across to so many out there!

2) I would also like to do a second photo project, again I am asking for those in the rheumatic disease community to pose for.  It will be titled "The Rheumatic Disease Journal:  A Day in the Life" to showcase some of the things that WE struggle with everyday that most people don't understand, like Stairs, using a can opener, taking a bazillion pills a day etc.

3) the topper on this cake for sure!  I want to, for Sept. 01 is the tentative date on this, as September is Arthritis Awareness Month IN CANADA.   I would like to do some kind of event here locally and I would like to have some people speak about their experiences with rheumatic disease and why this is so important - esp. the YOUNG PEOPLE!  There is a lot of great ideas I'm sure for what great things we could do including possibly  having the Arthritis Society and maybe even a few pharmacists and doctors or rheumatologists out and hopefully we can even get some local business owners, athletic stars, politicians and more out to speak & to pose for the shots in both books! So if you know anyone who is willing to take part in any of these three things, or are willing to yourself, or have many more great ideas please give me a shout and let me know and lets get some MAJOR AWARENESS GOING ON !!!!

At this time, I am hoping to do this on a local level - so to those on the Sunshine Coast.  I will put out a casting call of sorts for these photos and you would recieve digital proofs of the images taken of course as well and there is no sitting fee or any cost at all unless, for example, you choose you really like your photos and wish to order prints etc.  This is also NOT a paid shoot as it is going towards awareness!  So if you are interested in helping to support or plan or participate in either of the photo projects (as someone who has a rheumatic disease) or want to help to coordinate/support an event in September here in the sunshine coast as well - please don't hesitate to send me a note! Let's spread some awareness, share some love and support, give a ton of hope and help FIGHT FOR A CURE!

Wednesday, February 29, 2012

What Is MCTD?

For Rare Disease Day, I thought I'd share some information about my disease.  I was originally diagnosed at age 9 with Jr Rheumatoid Arthritis and Re-diagnosed at 14 with MCTD.  I was one of 12 kids in Canada with my disease and one of 50 in North America.  MCTD is still a rare disease even in adults, having under 200,000 people with it.  It is an "overlap" chronic autoimmune systemic rheumatic disease.  In my case I have:  Lupus, Sjogrens syndrome, Raynauds Syndrome, Vasculitis, Polymyositis, Lupus and Rheumatoid Arthritis.  I have added a little bit of info below both on MCTD and each of my diseases (simply the definitions, symptoms & complications)  as well as links to learn more about each as well.  This is NOT meant to be a diagnostic tool by any means - simply sharing information about the disease I fight every day and have for over 25 yrs and will for the rest of my life.  As it is chronic there is no known cause or cure.  The most common treatment at the moment is Biologics (immunosuppressants - basically chemotherapy).  I know there is a ton of info on here - so I thank you all so much for taking the time and making the effort to learn more about my disease and helping me to fight for education, awareness and A CURE!

Mixed Connective Tissue Disease:
Mixed connective tissue disease (MCTD) is an uncommon autoimmune disorder that causes overlapping features of primarily three connective tissue diseases — lupus, scleroderma and polymyositis. Mixed connective tissue disease also may have features of rheumatoid arthritis. For this reason, mixed connective tissue disease is sometimes referred to as an overlap disease.
Signs and symptoms include:
  • Raynaud's disease — blood vessel spasms that interrupt blood flow to the fingers, toes, ears and nose
  • Fatigue
  • General feeling of being unwell (malaise)
  • Muscle pains (myalgias)
  • Joint pains (athralgias)
  • Mild fever
  • Joint swelling
  • Swollen hands and puffy fingers
Raynaud's disease may begin years before other symptoms. As the disease progresses, it can affect any of the major organ systems, including skin, joints, muscles, heart, lungs, gastrointestinal tract, kidneys, central nervous system and blood cells.
Mixed connective tissue disease and its treatment can lead to serious complications, including:
  • Pulmonary hypertension. High blood pressure affecting the arteries in your lungs (pulmonary hypertension) is the most common cause of death in people with mixed connective tissue disease. You might experience difficulty breathing or chest pain if you have pulmonary hypertension. People with mixed connective tissue disease usually need to take medications to control pulmonary hypertension.
  • Heart disease. Mixed connective tissue disease puts you at risk of developing heart conditions, including enlargement of parts of the heart and inflammation around the heart (pericarditis). Your doctor may routinely monitor your heart with an electrocardiogram.
  • Side effects of long-term corticosteroid use. Corticosteroids are commonly used to manage the signs and symptoms of mixed connective tissue disease. These medications are effective, but they carry risks. If you take corticosteroids, your doctor will likely monitor you for adverse effects, such as bone loss due to osteoporosis or avascular necrosis, muscle weakness, and infection.
  • Pregnancy complications. There are conflicting studies, some of which suggest that women with mixed connective tissue disease may experience flares during pregnancy. Babies born to women with mixed connective tissue disease are at risk of being born with a low birth weight. If you're planning to become pregnant, talk with your doctor about this risk.
**You can learn more here: http://www.mayoclinic.com/health/mixed-connective-tissue-disease/DS00675 **

Definition: Lupus is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.
Symptoms:he signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. The most common signs and symptoms include:
  • Fatigue and fever
  • Joint pain, stiffness and swelling
  • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
  • Skin lesions that appear or worsen with sun exposure
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches, confusion, memory loss
Complications: Inflammation caused by lupus can affect many areas of your body, including your:
  • Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. Signs and symptoms of kidney problems may include generalized itching, chest pain, nausea, vomiting and leg swelling (edema).
  • Brain. If your brain is affected by lupus, you may experience headaches, dizziness, behavior changes, hallucinations, and even strokes or seizures. Many people with lupus experience memory problems and may have difficulty expressing their thoughts.
  • Blood and blood vessels. Lupus may lead to blood problems, including anemia and increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels (vasculitis).
  • Lungs. Having lupus increases your chances of developing an inflammation of the chest cavity lining (pleurisy), which can make breathing painful.
  • Heart. Lupus can cause inflammation of your heart muscle, your arteries or heart membrane (pericarditis). The risk of cardiovascular disease and heart attacks increases greatly as well.
Other types of complicationsHaving lupus also increase your risk of:
  • Infection. People with lupus are more vulnerable to infection because both the disease and its treatments weaken the immune system. Infections that most commonly affect people with lupus include urinary tract infections, respiratory infections, yeast infections, salmonella, herpes and shingles.
  • Cancer. Having lupus appears to increase your risk of cancer.
  • Bone tissue death (avascular necrosis). This occurs when the blood supply to a bone diminishes, often leading to tiny breaks in the bone and eventually to the bone's collapse. The hip joint is most commonly affected.
  • Pregnancy complications. Women with lupus have an increased risk of miscarriage. Lupus increases the risk of high blood pressure during pregnancy (preeclampsia) and preterm birth. To reduce the risk of these complications, doctors recommend delaying pregnancy until your disease has been under control for at least 6 months.
**You can learn more here: http://www.mayoclinic.com/health/lupus/DS00115 **
Definition: Vasculitis is an inflammation of your blood vessels. Vasculitis causes changes in the walls of your blood vessels, including thickening, weakening, narrowing and scarring.
There are many types of vasculitis. Some forms last only a short time (acute) while others are long lasting (chronic). Vasculitis, which is also known as angiitis and arteritis, can be so severe that the tissues and organs supplied by the affected vessels don't get enough blood. This shortage of blood can result in organ and tissue damage, even death.
Symptoms:  general signs and symptoms that many people with vasculitis experience include:
  • Fever
  • Fatigue
  • Weight loss
  • Muscle and joint pain
  • Loss of appetite
  • Nerve problems, such as numbness or weakness
Complications: Complications of vasculitis depend on the type of vasculitis you have. In general, complications that can occur include:
  • Organ damage. Some types of vasculitis can be severe, causing damage to major organs.
  • Recurring episodes of vasculitis. Even when treatment for vasculitis is initially successful, the condition may recur and require additional treatment. In other cases, vasculitis may never completely go away and requires ongoing treatment.
**You can learn more here: http://www.mayoclinic.com/health/vasculitis/DS00513 **
Sjogrens Syndrome:
Definition: Sjogren's (SHOW-grins) syndrome is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth.
Sjogren's syndrome often accompanies other immune-system disorders, such as rheumatoid arthritis and lupus. In Sjogren's syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased production of tears and saliva.
The two main symptoms of Sjogren's syndrome are:
  • Dry eyes. Your eyes may burn, itch or feel gritty — as if there's sand in them.
  • Dry mouth. Your mouth may feel like it's full of cotton, making it difficult to swallow or speak.
Some people with Sjogren's syndrome also experience one or more of the following:
  • Joint pain, swelling and stiffness
  • Swollen salivary glands — particularly the set located behind your jaw and in front of your ears
  • Skin rashes or dry skin
  • Vaginal dryness
  • Persistent dry cough
  • Prolonged fatigue
The most common complications of Sjogren's syndrome involve your eyes and mouth.
  • Dental cavities. Because saliva helps protect the teeth from the bacteria that cause cavities, you're more prone to developing cavities if your mouth is dry.
  • Yeast infections. People with Sjogren's syndrome are much more likely to develop oral thrush, a yeast infection in the mouth.
  • Vision problems. Dry eyes can lead to light sensitivity, blurred vision and corneal ulcers.
Less common complications may affect your:
  • Lungs, kidneys or liver. Inflammation may cause pneumonia, bronchitis or other problems in your lungs; may lead to problems with kidney function; and may cause hepatitis or cirrhosis in your liver.
  • Unborn baby. If you're a woman with Sjogren's syndrome and you plan to become pregnant, talk with your doctor about being tested for certain autoantibodies that may be present in your blood. In rare cases, these antibodies have been associated with heart problems in newborns.
  • Lymph nodes. A small percentage of people with Sjogren's syndrome develop cancer of the lymph nodes (lymphoma).
  • Nerves. You may develop numbness, tingling and burning in your hands and feet (peripheral neuropathy).
  • **You can learn more here: http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147 **
Raynauds Syndrome:
Definition: Raynaud's (ray-NOHZ) disease is a condition that causes some areas of your body — such as your fingers, toes, the tip of your nose and your ears — to feel numb and cool in response to cold temperatures or stress. In Raynaud's disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas.
Raynaud's disease is more than simply having cold hands and cold feet, and it's not the same as frostbite. Signs and symptoms of Raynaud's depend on the frequency, duration and severity of the blood vessel spasms that underlie the disorder. Raynaud's disease symptoms include:
  • Cold fingers and toes
  • Sequence of color changes in your skin in response to cold or stress
  • Numb, prickly feeling or stinging pain upon warming or relief of stress
During an attack of Raynaud's, affected areas of your skin usually turn white at first. Then, the affected areas often turn blue, feel cold and numb, and your sense of touch is dulled. As circulation improves, the affected areas may turn red, throb, tingle or swell. The order of the changes of color isn't the same for all people, and not everyone experiences all three colors.
Occasionally, an attack affects just one or two fingers or toes. Attacks don't necessarily always affect the same digits. Although Raynaud's most commonly affects your fingers and toes, the condition can also affect other areas of your body, such as your nose, lips, ears and even nipples. An attack may last less than a minute to several hours.
Complications: If Raynaud's is severe — which is rare — blood circulation to your fingers or toes could permanently diminish, causing deformities of your fingers or toes.
If an artery to an affected area becomes blocked completely, sores (skin ulcers) or dead tissue (gangrene) may develop. Ulcers and gangrene can be difficult to treat. In extreme untreated cases, your doctor may need to remove the affected part of your body (amputation).
**You can learn more here: http://www.mayoclinic.com/health/raynauds-disease/DS00433 **

Definition: Polymyositis (pol-e-mi-o-SI-tis) is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement. Medically, polymyositis is classified as a chronic inflammatory myopathy — one of only three such diseases.
Symptoms:Signs and symptoms of polymyositis appear gradually, so it may be difficult to pinpoint when they first started. They may also fluctuate from week to week or month to month.
Polymyositis signs and symptoms include:
  • Progressive muscle weakness
  • Difficulty swallowing (dysphagia)
  • Difficulty speaking
  • Mild joint or muscle tenderness
  • Fatigue
  • Shortness of breath
Polymyositis typically affects the muscles closest to the trunk, particularly those in your hips, thighs, shoulders, upper arms and neck. The weakness is symmetrical, meaning it involves muscles on both the left and right sides of your body.
The disease worsens over time. As muscle weakness progresses, you might find it difficult to climb stairs, rise from a seated position, lift objects or reach overhead.
Complications: complications of polymyositis include:
  • Difficulty swallowing. If the muscles in your esophagus are affected, you may have problems swallowing (dysphagia), which in turn may cause weight loss and malnutrition.
  • Aspiration pneumonia. Difficulty swallowing may also cause you to breathe food or liquids, including saliva, into your lungs (aspiration), which can lead to pneumonia.
  • Breathing problems. If your chest muscles are affected by the disease, you may experience breathing problems, such as shortness of breath or, in severe cases, respiratory failure.
  • Calcium deposits. Late in the disease, particularly if you've had the disease for a long time, deposits of calcium can occur in your muscles, skin and connective tissues (calcinosis).
**You can learn more here: http://www.mayoclinic.com/health/polymyositis/DS00334 **
Rheumatoid Arthritis:
Definition: Rheumatoid arthritis is a chronic inflammatory disorder that typically affects the small joints in your hands and feet. Unlike the wear-and-tear damage of osteoarthritis, rheumatoid arthritis affects the lining of your joints, causing a painful swelling that can eventually result in bone erosion and joint deformity.
An autoimmune disorder, rheumatoid arthritis occurs when your immune system mistakenly attacks your own body's tissues. In addition to causing joint problems, rheumatoid arthritis can also affect your whole body with fevers and fatigue.
Symptoms: Signs and symptoms of rheumatoid arthritis may include:
  • Tender, warm, swollen joints
  • Morning stiffness that may last for hours
  • Firm bumps of tissue under the skin on your arms (rheumatoid nodules)
  • Fatigue, fever and weight loss
Early rheumatoid arthritis tends to affect your smaller joints first — particularly the joints that attach your fingers to your hands and your toes to your feet. As the disease progresses, symptoms often spread to the knees, ankles, elbows, hips and shoulders. In most cases, symptoms occur in the same joints on both sides of your body.
Rheumatoid arthritis signs and symptoms may vary in severity and may even come and go. Periods of increased disease activity, called flares, alternate with periods of relative remission — when the swelling and pain fade or disappear. Over time, rheumatoid arthritis can cause joints to deform and shift out of place.
Complications: Rheumatoid arthritis increases your risk of developing:
  • Osteoporosis. Rheumatoid arthritis itself, along with some medications used for rheumatoid arthritis, can increase your risk of osteoporosis — a condition that weakens your bones and makes them more prone to fracture.
  • Carpal tunnel syndrome. If rheumatoid arthritis affects your wrists, the inflammation can compress the nerve that serves most of your hand and fingers.
  • Heart problems. Rheumatoid arthritis can increase your risk of hardened and blocked arteries, as well as inflammation of the sac that encloses your heart.
  • Lung disease. People with rheumatoid arthritis have an increased risk of inflammation and scarring of the lung tissues, which can lead to progressive shortness of breath.
**you can learn more here; http://www.mayoclinic.com/health/rheumatoid-arthritis/DS00020 **

Thursday, July 14, 2011

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.  

Tuesday, March 29, 2011

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.

Friday, February 25, 2011

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
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!