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OTStudent
08-22-2008, 09:00 PM
Hi everyone,

I really hope you dont mind me joining your forum. I am an Occupational Therapy Student from Western Australia and am currently doing a research topic on Lupus. Until i began my research i knew nothing about the existance of Lupus and i know that most people in my course still dont so i am hoping to at least raise a bit of awareness through my assignment presentation. After reading about the experiences that you are all going through i am very moved by your strength and determination and am so glad to see that sites like this exist to provide support.

As an occupational therapist i am hoping to provide my clients with the highest level of support and empowerment possible and am now asking for your assistance to do this. If i was to run a self-management program for people newly diagnosed with Lupus, what topics do you think it would be important to discuss? It is one thing to read in text books about symptoms and how they affect people but it is often a very different experience to find out the real difficulties from someone that is living the journey. Things that a health care provider may view as the most important things may not be the most important for someone that is actually living with the diagnosis. So i am hoping that if you have some spare time you may not mind sharing your knowledge with me. Any suggestions wold be greatly appreciated.

Thanks heaps and i wish you all the very best,

OTStudent x

rob
08-23-2008, 10:44 AM
Hello OTStudent,

My name is Rob, I'm a 40 y.o. man from the opposite side of the world, the state of Maine in the US. I was diagnosed with systemic lupus in 2004. I'm now unable to work, and recieve full disability. First off, I'd like to thank you for working to increase the awareness of this disease. For such a prevalent, worldwide illness, there are sadly very few people who know of, let alone understand what Lupus is.

In my opinion, one of the most important topics you could discuss with your clients has nothing to do with the pathology of the disease itself, or the the various treatments available. It has to do with personal relationships with family, co-workers, and friends. I thought I would have unconditional support, and understanding from the people close to me, unfortunately, I did not. I find this to be a common, and very painful thread with most of the people here on WHL. Being told you are lazy, that it's all in your head, that you are just seeking attention, was a crushing blow that nearly drove me to end my life.

Hearing the terrifying news that you suffer from an incurable, chronic, and sometimes fatal illness is one of the worst experiences of a persons life. But to then be accused of making it all up by people you thought were your friends, your trusted family members, is crushing, and almost unbearable. I wish I had been prepared for this. I wish someone could have coached me on how to tell those in your life what is happening, in a way that they could have better understood. I wish I had been warned that some people may not react well to the news, and may lash out, or simply abandon you.

So, in my mind, preparing people for the emotional turmoil they are very likely to experience, would be a cornerstone of a progam like the one you are considering. Stress created by all the emotional upheaval I experienced made my condition worse, and triggered flare after flare. As such, preparing people for the personal side of the disease, and giving them the tools to manage the stress in a more effective manner can have a drastic, and positive impact on the actual severity, and management of the physical manifestations, or "Flares", as we call them.

Anyway, those are my thoughts. Good luck with your project, and welcome to WHL.

Rob

Pearl
08-23-2008, 05:04 PM
Hello and welcome -

Thank you, as Rob said, for your interest and concern for the patients with whom you will be working. I agree with Rob that emotional support is extremely important when it comes to living with a chronic illness. Simply joining a forum like this one is a great place to start. Learning that one is not alone in this journey is of great comfort, even though everyone here would most likely say that they would not wish this beast on anyone.

Along with developing a support system, it is also important for the patient to become as educated as possible about their diagnosis. It is true that knowledge is power. While lifestyles may have to be adapted, life does not have to be over. Encourage your patients to look for the good that will come from an occupational or lifestyle change, as opposed to spending much time grieving over what has been lost. Easier said than done, of course. However, the sooner one focuses on the good that lies ahead, the sooner one begins to heal from the sadness of what's been left behind.

Just my two cents' worth (as we say around here)...

Best of luck to you, and thanks again.

Jana

OTStudent
08-24-2008, 12:28 AM
Thankyou both so much for your help.

Im not sure how many people have had exposure to occupational therapists but we aim to take a very holistic approach to treatment and look at all areas of a person's life not just the "medical facts" as many health care providers do. For example, we will look at a symptom and think "what activities of a person's life will that impact?", "what life roles will this interfere with?", etc. So your suggestions are very relevant to the type of approach we would like to use. I also think your suggestions are fantastic as like you said, it is not only the medical facts that can be disrupting to a person's life. This is why i have asked for your assistance as i believe in a client-centred apporach to therapy and believe that a client's perspective is often very different to what health care staff may view as important.

I am also very sorry to hear of the difficult journey that you have experienced and am disappointed that there are not health care providers already addressing these issues. I will certainly include all suggestions in my presentation and will suggest to my course coordinators that this issue be addressed on a higher level aswell.

Thankyou again for your fantastic suggestions.

OTStudent

hatlady
08-24-2008, 07:36 AM
Welcome student!

I'm also from half-way round the world, I'm in Illinois in the U.S. My story is a bit different, and that's what I'd like you to also learn about lupus. It is a very individual condition.

I was diagnosed in 2002, at age 50. My condition has remained mild. Especially early on, I had severe fatigue and a fair amount of pain. I decided on my own that I would avoid steroids at almost any cost - barring any organ involvement. So far I have not had to use steroids. Since you mention a holistic approach, I will share that I believe a holistic view is what has helped me immensely with this condition. My typical day includes some pain, and I need to pace myself to be sure I don't run out of energy before it is time to leave work - driving home when totally exhausted is a bit frightening!

Have you noticed I say "condition" and not "disease"? Lupus for me is part of my life. I am at ease with that knowledge and uncertainty. I am not at dis-ease. It is a condition of my being, not something apart from it.

I take a LOT of flax oil (omegas - similr to fish oil) in addition to ground flax seed with turmeric and ginger every day to reduce inflamation and strengthen my system. I know if I miss a few days - I HURT. I continue to exercise, not at the level as when I was 30, but some days I can work out for almost an hour with gentle aerobic and light weights, other days I walk the treadmill at 2 miles per hour (about 4 km/hour?) for 30 minutes and can do no more. Some days my brain is foggy, but I've learned to keep good notes - so usually I do OK at work and at home.

Stress to your patients that each of us is unique. I have learned greater acceptance, understanding of ability and inability and disabiity. While there are days I miss t he sun on my face and the ability to hike 10 miles through the forest, I've learned other things - and I am better for it.

:wink: I've also learned that hats (with wide brims) are a fun statement, and that staying OUT of the sun helps me stay healthy!

OTStudent
08-27-2008, 07:16 PM
Thank you once again for your wondeful suggestions and for sharing your story with me. I am very glad to hear that you have been able to take such a positive approach to your condition. We have certainly used all of your suggestions and have already told many people about Lupus and how disruptive it can be to a person's life so we are slowly spreading the message and hopefully playing our part in raising awareness of this condition. I have also been telling people about the amazing stories of making a difiicult situation a positive one and learning to have Lupus as a part of your life and not let it be your life.

Thank you once again.

OT Student

DrinkofWtr
09-11-2008, 07:49 AM
I think it would be valuable to address the uncertainty of this disease. We Lupus suffers can't plan our days very well because we never know from day-to-day, how we are going to feel and if we are going to have a good day or a bad day. Some people have bad days everyday. Yes indeed, it is a very individual disease. I try, also, to stay off Lupus medications. I have enough other secondary conditions for which I take medication, such as high blood pressure, spastic bladder, various infections to clear up, as the immune system is depressed causing other medical problems to sometimes occur.

Also, it would be valuable to address the discomfort associated with the disease. For example, I suffer sometimes because of lack of pain medication and the reluctance of some physicians here in the U.S. to dispense them.

Lastly, it would be interesting to know if Lupus is treated differently in different parts of the world. I live in California.