Jobs For the Disabled: J. Lodge Corporation

Hello Everyone!  I received this information recently from one of our readers and wanted to pass it along to you-

The J.Lodge Corporation, a quality call services company, has sustained profitability since 1999 and accredits its success solely to its unique employee model that consists of disabled business Americans. J.Lodge is striving to provide work from home part-time careers for disabled Americans. Currently, J.Lodge is expanding and accepting applications for those individuals who are interested in our company and who qualify for our positions. If anyone is interested, please visit: http://www.jlodge.com/careers and apply online.

~Charlotte

Editor, Lupus4You.com

New Resource: Physicians for Patients

Dear Readers, I received this information recently and wanted to share it with you:

Hi!

I wanted to pass along a new Lupus resource.

It is through a website http://www.lupus.physiciansforpatients.com

It is a community of lupus folks that interact online to give one another support.

There is a dedicated physician on the site to answer questions for the patients.

We originated as a group of doctors dedicated to helping people online in a way to help with high health care costs. The idea is to give a free resource to people that need alternative opinions and information. There are a lot of people that have limited access to health care (can’t find a specialist in their area, long wait times, etc.). This way it is easier for a smaller number of physicians to help a larger number of people.

Dr. Shanahan is the doctor. He is board certified in Rheumatology and trained at Duke University

In addition, we will be incorporating ‘health trackers’ soon! This tool can be used by the patients to track their symptoms and to see what may be contributing to them.

Physicians for Patients will also be looking for associations (trends in complex data sets of the cumulative data collected in this large community of patients. This is done in an automated anonymous manner). This is the exciting part! Our hope is to identify correlations between symptoms, daily activities, medications, and the environment. This will help us to better understand Lupus and hopefully to guide us to new potential treatments.

I am also hoping that you like the site and help us to spread the word about what we are trying to do (any group messages that can be sent/ links/ blogs are much appreciated) In order for us to make some new head way into better understanding lupus through identifying new statistical correlations we need quite a large people to participate.

Best regards,

Art

Art Kaminski MD

President, Physicians for Patients

Lupus Patient Voices from the New York Times

Recently one of my blog visitors forwarded me some information on a series done by the New York Times on Lupus patients (thanks Cyndy!).  This particular series allows you, the visitor, to hear Lupus patients discuss the disease in their own words.  The patients featured come from every walk of life and lend their voices to share information on Lupus, from living with it to treatment issues.

I encourage everyone to take time and visit this series on the web.  It is encouraging and at times, heart rending.

Visit it here:  Patient Voices: Lupus

Photography For the Soul

Spring is that time of year when I start looking forward to getting out and seeing people.  For those of you who are housebound much of the time, you understand what I mean.  Winter brings so many problems for people with Lupus- from falling on icy paths to aching joints when the weather changes.

I was so happy this year when leaves started appearing about a week ago.  I live in upstate New York, and we’re probably behind much of you who are reading this blog.  This morning I looked out my kitchen window and realized my white lilacs are on the verge of being in full-bloom – not easily achieved in an area where frost still can still taunt us, even in May.

With all of the blooming and budding going on, I decided to revisit an old hobby- photography.  Since I live in a rural area, there is quite a lot to take photos of, especially if you love wildlife.  I shot two rolls of film and promptly took them to the closest Walgreens.  When I picked up the film later, I was pleasantly surprised at how well the photos turned out.

My new interest in photography has not only given me a reason to get outside and enjoy the fresh air, it has also renewed my interest in a long-forgotten hobby.  I encourage others to do the same, especially if they find themselves locked away from the rest of the world, suffering in silence, with Lupus.

I recently had a friend help me hang bird feeders all over my front porch and back yard to entice feathered friends to visit.  This will give me more things to photograph in the future, after the spring blooms are gone.  If you are looking for something to do that doesn’t wear you out (buy a tripod and save your arms!), consider this hobby.  While the results may not end up on the cover of National Geographic, they could end up on your family newsletter.

Lupus Pregnancy News

Many women who have Lupus have successful pregnancies, however, a few women have difficulties or suffer miscarriages as a result of their disease.  Women who have these problems may have RSA or Recurrent Spontaneous Abortions.  This heartbreaking condition only adds more stress to individuals who already need less stress in their lives.  Individuals diagnosed with this condition have had at least 3 consecutive pregnancies that have ended in miscarriage.

There is good news on the horizon though.  Intravenous Immunoglobulin Therapy has been approved as a therapy for lupus patients, and it may also help pregnant lupus patients avoid miscarriages as well.

What is Intravenous Immunoglobulin Therapy?  Immunoglobulins (antibody proteins) are administered intravenously.  Currently this type of therapy is in short supply and not everyone will be able to obtain it or afford it (it is a costly procedure that may not be covered by insurance since it is considered “elective.”)

If you are interested in learning more about this particular research, please read our article, Lupus and Pregnancy Loss or visit the Lupus Foundation for the specifics of this therapy study.

Charlotte Gerber, Editor

Lupus4You.com

Wii equals Whee!

Please forgive the pun in my title.

I never thought I would pronounce that playing video games is good for you. Most of them probably aren’t and may be linked to epileptic seizures. The Wii, however, has brought playing video games to a whole new level- interactive and physical activity combined with fun games on the proverbial boob tube!

As many of you know who have been following this blog or my website (Lupus4You.com), I really don’t care for exercise, but I’m willing to get out there and try new things. (Yep, I tried and actually liked the Nordic Walking Poles). Lately, I started seeing new ads for the Wii game system for Wii Fit. I’m always skeptical at first, but then I decided to check it out. This is what this new system offers:

• A new way to downhill ski in your living room
• Rhythm boxing
• Running
• Snowboarding
• Yoga
• Dancing
• Soccer
• Hula Hooping
• Much more….

The Wii Fit system costs around $175 (on Amazon.com). The extras run about $20 for a colored silicon sleeve for the Wii balance board, and $20 for a re-chargeable battery pack for the balance board. Of course there are tons of other accessories if you already own the Wii gaming system ($315 and up on Amazon.com).

Bottom line, for someone with limited mobility, or is sore much of the time (like me), the Wii is a good exercise system compared to the cost of a 1 year gym membership (slightly more than the Wii Fit plus the Wii game system). Plus, I can play whenever I want and not pay for the gas to drive to the nearest gym – and as an added bonus, no waiting in line to use the equipment!

I’m going to give this a try and write up a product review on my site. Here’s hoping I don’t rip another ankle ligament or tendon!

Charlotte Gerber, Editor

Lupus4You.com

Cortisone Shots

I’ll admit it, I’m not fond of shots, no matter what their reason is. I also hate taking any kind of medicine, especially pills. I suppose it is no great surprise that a Lupus patient (who also has RA) would eventually have to have a cortisone shot, but I was silently hoping that I wouldn’t have to. Why? Because so many people have semi-horror stories to tell about these types of shots. The pain, the agony, and so on. So, I thought I would share my experience so that those who are having these shots for the first time know what it is like.

The shot I needed was for bursitis in my shoulder. It was caused by an old rotator cuff injury I had in college some 20 years ago. I have had chronic pain in my shoulder and decided it was time to get it checked out since the pain had evolved into a very uncomfortable burning sensation spanning about 6 weeks.

When the doctor is preparing to give you a cortisone shot they will use a marker to help mark the spot between your joints where they will aim the shot. It may include a little uncomfortable prodding to determine the exact spot, but in the end, the area where they give the shot will look a little like a connect-the-dot picture. The will then numb the area with a spray anesthetic, which is cold, but not uncomfortable. The doctor will then prepare the actual shot, take aim, perhaps pray, then deliver it. The sensation is a little strange and I could actually feel the liquid spreading in the joint area. The whole process lasted less than 5 minutes, and in the end it was worth it. I was given a prescription for 800 mg of ibuprofen to take daily, but I was eventually able to wean myself off of them after about a week.

It did take about a week for the shot to take the full effect, but the pain has subsided to a degree that I can deal with it. While I may need a second shot, I now know it wasn’t that big of a deal.

Charlotte Gerber, Editor

Lupus4You.com

Lupus Awareness Events

Hello everyone! I don’t know where you live, but I live in New York. I’m glad spring is finally upon us- I don’t think I can take too much more of 30’s during the day and temperatures in the single digits (to sub zero!) at night.

I wanted to list a few Lupus events that I am aware of in 2008:

2008 Lupus Walk and Health Fair- Sunday March 8, Kaipolani Park, Hawaii

7th Annual European Lupus Meeting- May 7-10, Amsterdam, The Netherlands

If you are looking for Lupus events in your area, specifically the 2008 Walks, please check the Lupus Foundation website.

Exercise for Lupus Patients

As a lupus patient myself, I know that exercise is important, but I don’t always do it. The reasons are two-fold: I’m always tired and usually in some sort of pain. Personally, I also have Rheumatoid Arthritis, so that makes exercise a little more difficult since I’m always pulling a muscle!

I found a few things that have helped me get though exercise without the monotony. I spend most of my time at home since becoming disabled and rarely drive anywhere due to pain meds (sound familiar to anyone?). So what’s a person to do that is housebound and in danger of gaining weight?

Try the following exercises (with your doctor/specialist’s permission, of course):

Yoga

Pilates

Belly Dancing

Masala Bhangra

Bollywood Dance

Okay, you may be thinking I’ve totally lost my mind! Well, really, I haven’t. I’ve been trying different exercises that I can do at home with little equipment and have the least impact on my body. I used to be a distance runner, but the constant pounding on my joints now is out of the question. I’ve been doing a combination of the above exercises and am finding them quite fun! It is also important to note that I will modify any moves if I sense any pain in my joints. You can still get the benefits of exercise without hurting yourself.
If you’d like to try some of these exercises without the investment you can do one of two things:

*Rent exercise videos from Netflix (or another video store), or your local library

*Watch FIT TV on your satellite or cable provider (they have lots of great workouts each day- you’ll never be bored).

Disaboom.com

Hello fellow readers of Lupus4You. I have decided to start a weekly shout-out for organizations and websites that have information for people with Lupus. So, to start things off, I’m letting you know about a new website that I have found helpful- none of the sites I will be mentioning pay any advertising to me- I’m just sharing information.

Disaboom is a neat website that allows users to create their own blog as well as interacting with other people who may, or may not, share the same disability.