Posted by: hockeygrl1 | March 1, 2011

Today is #LupusAdvocacyDay on Capital Hill

Today over 200 representatives from around the country will be on Capital Hill talking to our representatives and their staff about lupus. This is an annual event where we ask for more federal funding to bridge the gaps in lupus research, awareness and education.

This year, more than the past 3 years, is important to me. I am unable to take the medications that are currently used to treat lupus. I have moved on to trying to be approved for a medication that is in clinical trials to hopefully get my lupus under control. Because of this, I will spend today writing to my representatives stressing the importance of funding for lupus.

It has been over 50 years since a drug has been developed to treat lupus. I do take many medications that help with the symptoms, but none of them specifically treat lupus. I’ve had chemo, that was developed to treat cancer,  and corticosteroids or steroids, synthetic (man-made) drugs designed to work like the body’s naturally occurring hormones produced by the adrenal glands, in particular cortisol, to suppress my immune system. As well as antimalarials that are most often prescribed for skin rashes, mouth ulcers, and joint pain, but also can be effective in mild forms of lupus where inflammation and blood clotting are a concern. Yes, it was developed to treat malaria. Azathioprine (Imuran®) was developed to prevent rejection of kidney transplants. Kind of funny that it was being used to save me from a kidney transplant and CellCept is another organ rejection preventer that I’ve taken.

I am unable to take most of these drugs due to life threatening side-effects. One caused a tumor in my bladder. That tumor did disappear after a few months of no longer taking the medication, but it is very possible it could have become cancer. CellCept makes me unable to hold in fluids and I end up dehydrated and in the hospital and Azathioprine makes my pancreas act up and will also end up in dehydration and a stay in the hospital as well. These medications are not taken for just 10 days like anti-biotics either, I need to take them for the rest of my life. I can’t spend it hooked up to an IV in the hospital, so we need to find a new drug.

I bet you’re sick of hearing about what these drugs do to me, huh? I’ll stop after this post. It’s just for congress.

What would more awareness and education do for me? I hope that it would bring an understanding. I know now, as someone suffering from a conic illness, that what I thought people went through was wrong. I thought people could just push through it and still work or take care of a family. Even simple things, like taking a shower become complicated. I don’t want you to think that I can’t do anything because that is not true. I just need to carefully select what I’m going to do in a day. Even then, it’s hard for a healthy person to understand. I took that for granted when I was well and I’m thankful that I had 35 years of it. (Yes, I know now I had some undiagnosed flares, but for the most part, it was unnoticed)

The fatigue, I’ve started to call exhaustion, to hopefully get my point across better. I guess you can compare it to when you were crazy teenagers or in your early 20’s and stayed up for a few days straight and tried to live through a normal day on day 3. That’s the closest it can get for a normal person. On that day, everything you do makes you feel more tired. You get off the couch, get dressed, do your hair, brush your teeth, and put your shoes on. All 5 of these steps takes some of your energy. Next you have to drive to work. I now you don’t think of driving as an energy steeler, but it is. Oh no! You forget your sunscreen! Now more energy is being sucked out of you. Even a desk job takes your energy. Every phone call and every email taking a little more. Getting lunch is a whole other thing. There’s at least a walk to the break room and back and then feeding yourself. Yes, that takes energy too. Going to the bathroom does, getting a pop does, walking to a meeting does, it all does! None of this brings up stress either. Added stress of something going wrong just compounds the fatigue. Now that the day is done, there’s a drive home. Once you’re home theres dinner and homework with the kids. After all that, you’re lucky if you don’t pass out on the couch.

This is why I cannot work right now. Just typing this, and I know I’ve missed stuff I’d need to do, makes me think “Oh my God, how would I survive the day!” This doesn’t even take into account all the viruses I’d encounter because everyone goes to work sick. With my suppressed immune system, a cold can become pneumonia in no time. There’s also dealing with co-workers who don’t understand your illness. Who think you’re just milking the system and aren’t really that sick if you miss a day or two of work. Yes, I know there’s FMLA but that is unpaid leave. How would I support a family of 3 on unpaid leave?

There is my whole list of why I’m thankful for SSD. I had to write to my congress person to get that approved. Senator Norm Coleman did it. With in a month of contacting him, it was approved. Because of that, I believe that we are listened to. They have changed the guidelines for lupus and SSD and that’s a step in the right direction. It is a complex illness and it’s not understood. Education and awareness would help this.

Back to medications. There is as new medication on the horizon called Benlysta. This would be the first drug approved for treating lupus in 50 years. I keep repeating that because I think it’s crazy that we’ve had to suffer for 50 years with no treatments specifically for lupus. We have drugs to help men with sex, but I could die from lupus because there are no more medications to treat me? That baffles me. It might be available by prescription this year.  I hope it is.

What do I want to happen today? I want my representatives to do something. I want them to see that people are suffering with this illness and that we need new treatments. I want awareness about my illness. It is way more than just a rash on my face. Fatigue is not something that some caffeine or a nap will take care of and all the home cures you can throw at me will not help. Most of all, I’d like people to know what my purple ribbon and butterfly stands for; that I am a lupus warrior and I will beat this illness.




  1. I think you are amazing….

    • I love you Kimmy and my cupcakes too!

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