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Love Simple DVD Donates To Lupus Research Foundation

Posted by Connie on Monday, November 1st, 2010 at 11:00 pm and is filed under Advocacy, Autoimmune Disease, Non-Profits, Shopping.
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Love Simple DVD sales (10% of proceeds) will be donated to the Lupus Research Foundation (Lupus Research Institute).

Your Indie Films/Synergetic Distribution has acquired worldwide distribution rights for the film Love Simple, directed by Mark von Sternberg. The film will be available for purchase internationally on Tuesday, November 11. The story of Love Simple is based on a woman, Seta, who has lupus and a man, Adam, who lives at home and cares for his sick father. Both meet and are not honest about their situations.

This is a romantic comedy that shows what a person with lupus goes through in her every day life. It helps raise awareness about lupus and by pre-ordering it you can help raise money for research.

If you pre-order Love Simple on Amazon.com you’ll get these offers as well:

  • Pre-order Price Guarantee! Order now and if the Amazon.com price decreases between your order time and the end of the day of the release date, you’ll receive the lowest price. Here’s how (restrictions apply)
  • Get $4 worth of eligible movies and TV shows from Amazon Video On Demand after you order your item. Limited to one promotional credit per customer. Here’s how (restrictions apply)
  • Save up to 60% on select seasons of top TV shows, including 30 Rock, Eureka, and Friday Night Lights. Offer ends November 6, 2010.

Help support the Lupus Research Foundation and enjoy the great movie, Love Simple.

Solution To Low Potasium Causes Fatigue

Posted by Connie on Saturday, August 28th, 2010 at 9:09 pm and is filed under Autoimmune Disease, Chronic Illness, Health Information, Prescription Medications.
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The endocrinologist finally found a solution to the low potassium issue I’ve been having, but now I’m constantly fatigued. I can sleep all day and all night. If I try to stay awake, the brain fog is much worse and I can feel myself nodding off.

I’ve been taking Spironolactone along with Potassium supplements. My Potassium level at my last blood test was 3.8. That is the highest it has been in years. I was thrilled! When the doctor saw the improvement I made, he increased the Spironolactone to 100 mgs. twice a day and stopped the Potassium.

I didn’t realize the fatigue I was feeling was related to the increase in my medications until I did a search for side effects on Spironolactone. Now I’ll have to call the doctor on Monday to see if he agrees with me and see what I can do to maintain the normal potassium level that I need. Because of the diagnosis of Myasthenia Gravis, I should be at a Potassium level of 4.0 so this is a serious health concern for me. I don’t want to spend my life sleeping though.

Have you had a problem with fatigue and Spironolactone?

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Celebrity Health Advocates

Posted by Connie on Tuesday, August 10th, 2010 at 2:27 am and is filed under Advocacy, Autoimmune Disease, Cancer, Chronic Illness, Health Information.
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Celebrity health advocates often do a good job of  spreading the news about a specific medical condition. When you see a YouTube video featuring Zak Efron and Vanessa Hudgens for Stand Up To Cancer, the cause gets noticed. Think about Jerry Lewis and what he has done for the Muscular Dystrophy Association and the conditions that the MDA covers.

Dick Van Dyke was recently named the spokesperson of the Cell Therapy Foundation which promotes stem cell therapy for diseases such as heart disease, Lou Gehrig’s disease (ALS) and cancer. Kellie Martin, who you may remember from Life Goes OnER or Mystery Woman is a spokesperson for the American Autoimmune Related Diseases Association (AARDA).

Celebrities bring awareness to unknown diseases. They help to raise money for research. They also inform people about symptoms, how to get diagnosed and available treatments. It can be difficult, though, to find a celebrity advocate for a medical condition that they actually have, especially if they are working. Many celebrities want to hide any kind of illness they have. It can hurt their career because they can be seen as someone who may not be able to show up when needed.

As they say, the show must go on. If a celebrity can’t work because of being sick, being hospitalized, or having a flare up, they can shut down taping of a show. There are also insurance issues to be concerned about. If a celebrity is known to have some type of medical problem, the insurance for the project they are working on (TV show, movie, CD, video) can be increased. Let’s not forget the rumor mill and the embarrassing stories that will be reported. For example, there was recently a sighting of celebrity buying incontinence supplies and it was fodder for celebrity gossip.

Rheumatoid Arthritis And Humira

Posted by Connie on Monday, July 12th, 2010 at 10:55 pm and is filed under Autoimmune Disease, Chronic Illness, Health Information.
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I have Rheumatoid Arthritis and use Humira for it. Before using Humira my doctor tried the normal prescription medications until the pain lingered and I had trouble walking, typing, opening jars and the pain lingered even more. After about two months of using Humira I began to notice that the pain lessened and I my joints were a more flexible. I could walk longer, type a bit more and open jars with one of those rubber things.

Humira had a wonderful side effect too. It helped put the Ulcerative Colitis in remission. Imagine that. If I could use Humira more than once every two weeks, I’d be shooting it up a lot, a whole lot. I learned that Humira is used to treat Chrons Disease so it’s normal to have a remission to the UC.

humira

I had a bit of a scare the last month though. Even after the Humira, I had more than normal pain from the Rheumatoid Arthritis. It was bad and in places I didn’t have it before like my knee and my left wrist. I had trouble walking, typing and opening jars again. Sometimes it was so bad that I couldn’t do any of those things. I saw my Rheumatologist after it happened a second time. We discussed that some times the Humira can stop working on your body.

We’re going to wait it out and use some other medications in the mean time. I’m thinking positively right now because Humira has worked so well for me all along. I’m thinking that it’s a flare up and my doctor agreed that it’s a possibility too.

How To Cope With A New Diagnosis

Posted by Connie on Monday, June 7th, 2010 at 4:56 pm and is filed under Autoimmune Disease, Chronic Illness, Support Group.
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It’s difficult to cope with a new diagnosis, especially if you have a serious health issues already or a list of chronic illnesses to live with. I’ve recently had a new diagnosis of narrow angle glaucoma and it felt like my body was waging war against me.

Acknowledge Your Feelings

Because getting a new diagnosis can cause us to grieve, we may go into a state of denial. That’s when your support system can come into play especially if you need immediate medical treatment. Once this has passed, go along with your feelings which may run the gamut from anger to fear. I played the pity party for a while because I did not want another thing wrong with my body. I was sad and angry. My family and close friends let me cry and yell and stay alone for a while. Then they were sure that I got to my appointments and followed the doctor’s orders to save my eyesight.

Share With Others

There’s no need to tell everyone you know right at first, or even tell anyone at all. Soon, though talking about it with those closest to you can have a big impact on how you deal with your diagnosis. You probably know the people that will say the right things, be there for you and kick your butt when you need it. I told my husband immediately because I didn’t know if I would be able to make the drive home from the doctor’s office without hearing his voice. Then I shared it with just a few people. When I was feeling more confident after learning more about this type of glaucoma, I wrote about it on my blog.

Support groups specifically for the new medical condition may be helpful. You can find them online and sometimes in person. If this is a long term condition, consider joining an organization that your doctor or support group recommends so you can keep up with the latest information.

Get ‘Er Done

Even if you are still depressed, angry or wanting to advance medical science by 100 years, get treated, get tested, take the medicine you need and do what you can to get better or live with the new diagnosis. It’s not going to be fun, but your life is worthwhile.

If you feel too depressed to make a move, call in the ranks of your support group, tell your doctor or see a counselor, psychiatrist or psychologist. Please promise me that you’ll get help.

Don’t Be A Hero

If this new medial condition causes pain, the new medicine is making you feel sicker, you don’t like the treatment center, etc. tell your doctor. Don’t suck it up. You’re going through a lot right now and you have every right to feel as comfortable as possible.

It’s Not Yours

I never take ownership of the chronic illnesses that I have. You won’t hear me say, “My Sjogren’s Disease is making my eyes dry.” Instead, “That damn Sjogren’s Disease is making my eyes feel like crud.” The medical condition doesn’t have me. I can accept it, but not like it. Try your best not to let your medical condition run your life. It will be hard at first when you’re newly diagnosed, but as time goes on it will become a part of your life and not your life.

There’s still some anger, sadness, even depression and anxiety, but I get help when I need it and I fight when I have the energy. If that’s your style, make that your goal. If you have a different way of coping with a new diagnosis, then find it and go for it.

Top Five Ways To Have Fun When You Are Sick

Posted by Connie on Tuesday, September 29th, 2009 at 2:29 am and is filed under Autoimmune Disease, Chronic Illness, Loving Life.
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When you’ve got a cold, or are in a flare up, or recovering from surgery,  you need some fun time to forget your woes. You may be stuck in bed or even the hospital but you can still do somethings to amuse yourself. Here are the Top Five Ways To Have Fun When You’re Sick:

crayons

  1. Color – Be sure that you get a brand new box of crayons and a new coloring book. There’s nothing like the smell of Crayolas to bring a smile to your face. Don’t worry about coloring in the lines. Just go at it!
  2. YouTube Videos – If you’re able to use a laptop, then just go to YouTube and watch the videos that people make themselves. Keep clicking around and laugh at the stupidity of people and what they’re actually willing to put online for everyone to see.  No computer? Watch some form of funny videos on TV. There’s tons of them now.
  3. Talk Radio -  Find a talk radio station that has the most outlandish ideas about conspiracy theories or zombies and call in. Pretend to agree with the host and carry on like you’re having a normal conversation. Blame it on the meds.
  4. Play With Toys – Pull out those old race cars, Barbies, Legos and play in bed. (Not that way.)
  5. Hair and Make Up – If you feel up to it, play with your hairstyle and do something wild. Try some new shades of make-up that you haven’t used in a while. You too guys. Lots of girls love it. If you’re not up to it, let someone you love, help you out. Now that’s fun!
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