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LIVING WITH LUPUS | Jodie Rose Nimigon

Story by Jodie Rose Nimigon

Hello Gals and Guys,

I am very anxious to write this blurb, as I believe that having support from individuals going through similar situations as yourself is one of the best therapies possible. And, of course, getting support for like-minded individuals begins with a simple introduction. That said, ironically, I am currently working towards my Social Work degree and am in a Masters preparation year (at the University of McGill) given I have already completed an BA in Honours Psychology with Thesis. Maybe I should back-track a bit…

It is since grade 6 that I have been interested in psychology and/or counselling and have been driving towards a career in these areas. Luckily I was accepted to the University of Ottawa for the Honours Psychology program for September 2000, upon completing my high school diploma and OAC credits in June 2000. I was diagnosed just after my 13th birthday and hence have been living with Systemic Lupus Erythematosus for 10 ½ years. My initial symptoms began when I was 5 years old with chronic back pain and other joint issues, however they were discounted as being growing pains for numerous years. The summer prior to grade 8 proved itself to be very challenging, as well as the subsequent fall as I was officially diagnosed the first week of November. At the time, my symptoms included arthritis in my hands, knees and ankles, severe back pain, pleurisy, hair loss, sores in the nose and mouth, continually fatigued and the infamous rash across the face. Since I have only had 2 major flares, and have not managed to get-off of prednisone or plaquenil, while several other medications have been alternated. Subsequently, it was February 2003 that I was also diagnosed with osteoporosis (don’t we all love dealing side effects as if the original illness wasn’t enough!).

Following all my accumulated experiences with many volunteer positions and a couple of paid positions during my 5 years at the University of Ottawa, I am even more sure than ever that I am heading in the right direction. I should explain that I decided upon entering post-secondary studies that I would take 4 courses per semester as opposed to 5 in order to reduce my stress level, while also ensuring that I might enjoy my experience of university living. The volunteer positions I have eluded to are those with the Peer Help Centre at the University (provide one-on-one counselling and receive training through the local Distress Centre), the social-psychology laboratory as a research assistant (which lead to a paid position for 2 months at the end of the school year), youth representative with Lupus Ontario (formerly the Ontario Lupus Association), member of the speakers bureau for Starlight Starbright Children’s Foundation (yup, received a wish through them in Grade 12), and volunteer for Distress Centre Durham close to my parents place during the summer months (which lead to a paid position last summer). While it is also important to note that my undergraduate thesis title was Suicide Rates, Bereaved Survivors of Suicide and Community Resources. It suffices to say that I am not only interested in providing counselling services in a hospital setting to individuals newly diagnosed and living with different conditions (as well as their family members), and group interventions and support systems, but also deeply interested in social justice issues towards the lack of resources for certain populations (namely related to different types of loss whether suicide and homicide death or diagnosis with chronic illness…as most terminally ill individuals and their family members receive much more through the formal hospital system). This leads me to very excited that I found out on Friday May 27th that my placement for the coming year is at the Royal Victoria hospital.

On a lighter note, I love to read and dance, and go to the gym every other day to help with the bone-loss issue as well as help my energy levels. I am learning to love Montreal, as I am used to the smaller city of Ottawa, yet it is quick to fall in love with all the culture and the fact that everything is at my disposal, and the metro (subway) system is not really that scary to figure out and utilize. Of course, being extremely interested in the courses that I am following definitely helps, and the motivation that I only have 2 years until I receive my MSW is rewarding in itself. However, should health interfere with the plans, I can still get a job in the field following this coming year, which is always a consideration to be made for any of us, options are great. Finally, I am also having difficulties in Montreal as my love is still on Ottawa completing his second undergraduate degree this coming year (and working this summer). I miss him terribly, particularly since we got together after a really rough period in my life (harassment from an ex-boyfriend), and because he is the most understanding and sensitive individual I have ever met. He will be joining us on Saturday to learn more about Lupus, while he always comes to my doctors appointments, and encourages me to get enough sleep (and other health activities).

Yet again, I am elated to have been able to be able to share a brief history of myself with all of you, and hope that it serves to inspire that a “normal” life is possible, despite how bleak the possibility seems at the moment.

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