Saturday, February 15, 2014

Just a Few Frustrations from Managing My Lupus...

There are many responsibilities in managing a chronic illness like Lupus, such as understanding your medication and diet.

I have done many things to improve my health, including going gluten free for nearly 8 months. Unfortunately, a gluten free diet did not help my pain or digestive issues. Although, I still avoid gluten when possible and keep a high vegetable and fruit based diet. Plus I quit smoking three years ago as of 9/10/13. All of these things help me keep proper hydration levels too, which is challenging with Sjogren’s syndrome and my medications.

I must be doing something right because my most recent blood work looks fine, including my vitamin levels... oh, except my positive ANA. Which to some people, is the only thing that would validate that I have lupus. However, the reality remains that no single test is available to diagnose lupus. Which is one of the many reasons we need to do a lot more research.

I know I have been fighting a flare for the past 18 to 24 months. I truly have lost count. The fatigue has been so severe, I have been sick to my stomach for days on end too many times to mention, the pain is constant and ranges from bad to hard-to-think bad and headaches and oral issues…

I am still not suffering any kidney or liver damage, so that is good. Especially when you see the cocktail of pills I take daily.

I pray for relief from just the mental fatigue so I can be productive for my men; please, I can deal with the pain. Yet the reality is, chronic pain, leads to mental fatigue. Day after day, month after month, year after year... pain, sickness, and fatigue.

Regardless of all I’ve accomplished, I get frustrated because my lupus symptoms have both progressively gotten worse and more symptoms arrive every year. I have a great support group, but it is small. Lupus has put a great divide in many of my relationships that I thought could never be broken.  

I think I am stronger each day, but I struggle trying not to be a drain on my family. I believe that if I advocate, bring awareness, and stay positive, I will be able to continue to identify my life as the good and blessed gift that it is.

Although I hate to admit it, I have asked myself, why do I fight for lupus awareness? What is the point, it seems like nobody new is listening? My answer is simple and always the same; I will fight to bring awareness, to educate and support people about lupus. I will do this for myself and for my family and friends. I will do this through my “Lupus Cloud” blog, social network pages and participating in lupus walks and other awareness events as often as possible. [#LHandSign ;-)]

I won't give in because I know research will help us better identify lupus flares and therefore find better preventative measures for the patient's individual needs. And ideally, create a cure for lupus. 

Tuesday, February 11, 2014

Who Wants to be a Hero? It is easier than you think.

For over a year now, it seems I have only been able to complete about 60% of my obligations. I mainly blame the symptoms of nausea and vomiting and severe fatigue, especially mental fatigue. These symptoms also take away from the quality time I have to offer my loved ones. Of course, the extra financial stresses from medical expenses create another strain on taking care of business.

Those of us living with chronic illnesses, like lupus, are too familiar with dealing with these issues. This is part of our job, taking care of our health. It gets costly. It is physically draining for anybody, much less, somebody whose symptoms are triggered by stressful situations. I feel like I need to meditate all day, to stay away from stress, and that isn't possible. Which gets depressing.

If it is not one thing it is another.

I am sick of explaining this to people. That is, the people that still ask about me.
Most of those people are doctors which I pay.

I want to be strong enough to fight for a cure. Although I don’t think I will try to form a team for a lupus walk this year. I am tired of feeling like a failure. I have been unable to rally any new members or donors to my team for quite a few years. I will still attempt to attend our local lupus walks. I am sure I can find another team who would welcome members because my problem is not that uncommon.
It is easier to speak out for others than for myself. I am certain that is a common feeling. I try to imagine what I would do if my best friend were in my situation. I would like to think I would build a team for my best friend. My problem is my best friend is my husband and he supports me in so many other ways I cannot be disappointed if he doesn't try to build a team. The one friend I have in this area, who easily qualifies as my closest friend, is trying to juggle her own life and also supports me in many other ways. So as much as I get frustrated that there is nobody in my life who will take the time to help me build a team, I also understand. And there are other ways to spread awareness.

For example, using social media and making personal requests for friends to share lupus awareness information and the like. If you have friends who do not use social medial try to let them know you would love to hear about them talking about lupus with anybody. Even their mail carrier. It is easy to show support, without giving too much time or energy.

I also think it is important for anybody living with a chronic illness to remember how we were when we were healthier. As much as I want people to understand how I feel, I don’t want them to experience it (not even the unbelievers). However, in my past, I have experienced what it was like to be working full-time, going to school part-time, while raising a child by myself. I know I would have joined a walk if I could afford it. But it was rare back then that I could afford anything extra. So I cannot say for certain what I would do if the situation was turned around. The only thing I do know for certain is I would care, and I would love it if I had simple ways to show it to anybody struggling.

I have to believe that is a common feeling as well. People care. The bottom line here if for those of us who are fighting illnesses to be aware that we have a much easier time understanding where the healthy person is coming from than the healthy person to understand what we are going through. Share your experiences with anybody who wants to listen when you can.

And lastly I want to share one of my favorite ways for people to show support; send a lupus warrior(s) a photo with the #Lhandsign*. The #Lhandsign Flash Mob Freeze* was made in April of 2013, and has become quite popular within the lupus community.  A simple picture of yourself and the #Lhandsign could make you somebody’s hero. Do you want to be a hero? It is easier than you think. 

Tuesday, January 14, 2014

You are invited to our new Lupus Cloud Warriors Unite, Pinterest page.

You are invited to our new Lupus Cloud Warriors Unite, Pinterest page

Pinterest has new pages that allow you to map your pin. So, I thought this would be a wonderful opportunity to map out all the places we are fighting lupus. Plus, you might even find this a unique way to find lupus warriors in your area. 

Here is how it works. If you come and follow our page, I should be able to see it and send you and invite (which enables you to post your pins on this page and then "map" it) once we have followed each other on Pinterest. 

If I miss you and do not send you an invite within 48 hrs, please send me an email at,, type "Pinterest page" in the subject line, and include a link to your Pinterest account, then I will send you an invite. You can also email me any other questions you may have about how it works.

Of course, when you map your pin, simply put your city, you should NOT enter your exact address online.
Lupus Cloud Chrissy and Mark, follow us on Pinterest
Lupus Cloud Warriors Unite, Pinterest page