A Gift of Hope...

The Lupus Foundation of America has many great ways to give the gift of hope this Holiday Season.  As many of you already know, I have Systemic Lupus, and have been diagnosed since 1997.  It has been a long 12 years of many challenging moments in regards to my health.  I am happy to say though that many great strides have taken place with treatments and advancements in understanding Lupus since 1997.  

I am asking this year for the Holidays a small request.  If you want/choose to do anything for my family, please consider taking a look at ways to contribute to the Lupus Foundation.  You can do so by clicking on this link  HERE.  It would aid with research, clinical trials, and so much more. 

Hoping you and yours have a wonderful and very blessed Christmas.

-Shannon

Prednisone Good News!!!

A few months ago I was forced to go back on the Prednisone to treat my Colitis and Lupus, because my current health insurance does not cover the Humira that I need to take to get off of the Prednisone!!! Well, after many months of research to find a way to get my (over $1200.00) a month Humira Rx...I found a company that is called Partnership for Prescription Assistance-PPA. I may qualify to receive my Humira for FREE!!! I am almost done with the application and plan to have it all sent in this week.
What does this mean for me? Well...first-it means I can STOP the prednisone-which will result in losing all this icky prednisone water weight (whoo hoo!) In the past when I have stopped taking this medication, I lose about 60 lbs of water weight very quickly-which is ALWAYS fun, and one of the big perks for me :-)
Secondly-My osteoporosis will start to get better since the prednisone depletes my bone density so rapidly.
Third: My Diabetes will improve dramatically since Prednisone elevates sugar levels, and when off of it-I am able to keep a tight control over my health in that arena.
Last: Humira makes my overall health conditions so much better that IF we decide to have baby #2 this next year or so...WE CAN :-)
I am SO SO SO excited! I will be sure to keep everyone posted-but it looks like I will be predisone free and spring wardrobe skinny in NO TIME! :-) Thank God!

Walk for Lupus...

As many of you are aware, I have Systemic Lupus. I am an active Lupus Foundation e-advocate that encourages congress and elected officials to support legistlation important to people with Lupus and their families. This is something that I am very passionate about. I have been a part of the Lupus Foundation of America and it's efforts since 2000.

To learn a little medical history and information about Lupus-please click HERE.

This year I am planning my first Walk for Lupus Now! In the past-there was never an area that I was close to in order to join. This year I will be...so I am going to participate-and I am REALLY excited about it. The walk is in St. Petersburg, Florida June 6, 2009. My goal is to register as a team since I have a lot of friends there (that I'm hoping I can convince to participate as well with me). I will need to (beg) for donations in the next few months...but for now I am just keepin' it simple. :-) For more information on the walk and what this means for people with Lupus-click HERE.

Some Lupus Tid-Bits:

• Lupus Awareness Month: May
• World Lupus Day: May 10th
• Lupus symbol: Butterfly
• Lupus Color: Purple

To read my personal story I submitted to the LFA regarding the Zero in 50 Campaign that was chosen and featured on the Lupus Foundation website click HERE. (I am the 4th one down on that page). My personal story will be one of many that is being delivered to Congress during the LFA's Annual Advocacy Day on March 2-3 2009. I am praying all of these stories will encourage increased funds for research.

If you would like to participate as well in the Walk for Lupus Now this year, please click on the link I provided above to locate a walk or chapter in your area. I would be tickled if you participated in anyway at all! Lupus awareness is so important right now because many people still do not know what Lupus is-or the affect it has on those living with the disease. It is the ultimate "you don't look sick" disease. As the Lupus Foundation Awareness campaign explains it..."Someone you know has Lupus".

My story featured on Lupus Foundation Website!

If you remember reading my Lupus "50 Years without a new drug" post a few weeks back...well, The Lupus Foundation of America emailed me letting me know that they would be using my story as a featured article on their site. Click HERE to go see it and other stories they have featured on their website (you will have to scroll down). HERE is the official Lupus Foundation of American website.

Letter to Congress Regarding Lupus Research...

Here is the requested info from the LFA:
"Thursday, November 20, 2008 will mark an unfortunate anniversary. On that date, it will be 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug specifically to treat lupus.
A half century is a long time to be waiting for safer and more effective treatments for a disease that affects an estimated 1.5 million Americans and at least five million people worldwide.
We need to let Members of Congress know that they must provide more funds to conduct the basic research that pharmaceutical and biotechnology companies need to develop new treatments for lupus. At the same time, we want to express our collective gratitude to the hundreds of researchers and industry executives who have been working tirelessly for many years to bring scientific discoveries from the bench to the bedside.
So what does 50 years without a new lupus drug mean to you?
No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the old drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.
How can you help? Share your photo & story!

So here is the letter and photo I submitted:
My name is Shannon Strong. I was diagnosed with Systemic Lupus at the age of 18. It has been 13 years that I have lived with this disease. After trying many medications that did not work because they were not specifically designed to treat Lupus, or the flare-ups associated with it…I was put on Prednisone because it was the only thing that controlled all of the facets of my daily pain.
Since nothing else seemed to work, I have remained on Prednisone for 6 years. In those 6 years I have developed Ulcerative Colitis, Type II Diabetes, and Osteoporosis. I suffered a broken back 4 years ago and underwent Kyphoplasty surgery to heal the shattered L4 vertebra I received from simply walking my dogs one morning.
50 years without a new drug to specifically treat Lupus means many more visits to Doctors that have their hands tied in prescribing medications to me because there are currently none that can help my situation that will not be the demise of my overall health eventually. 50 years without a new drug for Lupus means that I may not be alive to see my 15 month old son graduate high school, get married, and have babies of his own someday. I look at his beautiful, innocent little face every single day and wonder if I will be with him long enough for him to learn all of the beautiful things about life that I want to teach him. I wonder if he will have enough time with me that in case something does happen in the future-that he will really truly know me, and everything I believe in and support-and will that be enough for him to emulate the kind of life I want him to live, and be the kind of person I pray for him to be? Will it be enough time with me that he will always carry a part of me with him in his heart if he had to live without Mommy? Nobody should have to ask themselves these questions everyday of their life.
I am forever in support, and grateful for all of the current technological advancements and to the researchers and executives who are working diligently to create a medication that is safe and effective in the treatment of Lupus. Their hard work and focus on these new medical studies and treatments for Lupus is astounding, and more appreciated than words can describe. I am by far not the only person that asks themselves these questions daily, and I will certainly not be the last. I ask humbly, please provide increased funds for research to find ways to develop safer and more effective targeted therapies for lupus. Nobody can afford to wait another 50 years.


You can click the link to the far Right of my page to read more about this letter and specifically about where this letter will go, and who it will help. The link is Lupus Blog-LFA.

Back on Prednisone :-(

Well, I am officially back on prednisone :-( (sigh). I had been taking Humira for awhile and it was working wonders with my Lupus and Colitis, not to mention it helped keep my Diabetes in order and did not contribute to more Bone loss for the nasty Osteo....BUT-my current insurance policy covers exactly .44 cents of $1500.00 for the prescription each month! Whoo-hoo! Unreal. I am so frustrated at the health care industry. Here I am stuck taking a medication that is slowly killing me so I can function enough to work and pick up my child each day. If I did not take prednisone, I can't even get out of bed...much less lift anything-including Brayden! Prednisone has also spiked my sugars, and that is contributing to putting more of a strain on my kidneys because my sugar is so elevated. So...I have been back on it for a few weeks now, and have already started getting "puffy" again from the water retention, and I am really frustrated. I don't usually use the blog to vent my frustrations, but writing about it makes some of it better in some ways I guess. So...not only does my insurance not cover the Humira, but it also does not cover my diabetes meds or supplies (ouch), and/or my osteo shot Forteo!!! All of those medications each month without insurance would cost me about 3K! There is no way I can afford that, so I will continue on the prednisone because it is the ONLY thing that works...and believe me I have tried a million things over the last 10 years that just don't do what I need it to do. So, I am concerned that my bones are going to get worse again (worse than an 80 yr old woman-yes) worse. I am concerned that I will soon be told not to pick up my son anymore. I am really not supposed to be lifting him now, but thankfully the Occupational therapist I saw prior to his birth taught me how to pick him up in ways that I would not break my bones!!! That was with the understanding that he was not working on 25-30 pounds either though!

I am not frustrated that I am sick-I have long come to terms with those emotions- but I am frustrated that because of insurance I cannot get the care I need! That's backwards huh? I'm frustrated that I am taking a medication that allows me to hold and pick up my son, but is slowly killing me at the same time! How do you choose? I am frustrated that I work and do not rely on assistance like I certainly could...and I struggle to find insurance to pay for medications I need-when others just rely on assistance from the state and get all of their medications for FREE!!!

I have made my choices, and I choose to work and support myself in this area, but it still rubs me the wrong way sometimes when others could do the same, and don't, and they don't have to worry about taking meds that will eventually be the demise of their kidneys, liver, heart etc! I have been looking into the drug companies that make Humira, and right now they will offer a $600.00 rebate to assist with the cost, but that still is not going to help me! UGH! I am feeling okay now that I am taking prednisone again, but the winter weather has taken its toll on me this year. My Lupus has flared due to all of the changes and stress at work, these hours are killing me, and the weather does not contribute anything positive for my health this time of year either. The hours at work would not be so bad, except last week Brayden woke up when I got home at 3am, and stayed awake all day-three times!!! I tried to get him back to sleep with no success...he just wanted to play and snuggle with Mommy. The first night I played with him and prayed I would get a chance to nap later-which I did for two hours that next morning. After the second night of this, I played again, and prayed he would nap again, which he did for three hours the next morning. By day three-I woke Ron up-he came downstairs to play with Brayden, and I went to take a shower to wake myself up. I stood in the shower against the wall for a few minutes, then began sobbing because I was literally exhausted!!! Its the kind of sob that is not derived from sadness, but just pure tired frustration. I was not frustrated with Brayden because I certainly don't mind it if he needs me, in fact I love those times with him...but I was so so very tired. So...this week it hit me pretty hard...and I am trying to catch up my sleep and feel better. That just makes the insurance thing that much more frustrating to deal with right now. Hopefully soon I can figure out some solution to this medication dilemna. I will keep you posted.