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. 


  1. This is great. This really helps. You're not alone. I deal with the same thing.

  2. We have to stick together and just take it one moment at a time. oxo

  3. Suzy Lynn BuchanonMarch 10, 2014 at 10:43 PM

    This is true. There r so many more ppl that still have not discovered if they have lupus or another auto immune disease. By the way, it's nice 2 meet u & my name is Suzy♡¤♡¤♡

    1. Hi Suzy, it is nice to meet you too. You are right about how long it takes to figure out which autoimmune disease a person might have. We will reduce that timeline too by spreading awareness so people will want to support lupus research. oxo Thanks for joining me here. ~Chrissy, Lupus Cloud

  4. Chrissy I am listening don't stop
    Writing please we all need to be heard. It's therapeutic. I believe writing has helped my remission something I never thought achievable. I still have fibro and big pain issues. But I'm still here.

    1. Your comments are a great encouragement to me. Lupus symptoms, mainly fatigue and stomach issues, have kept me from finding consistency in my posts. Although, once I get around to editing and scheduling what I've written in my journals, my posts here may just become more regular.

      I won't stop. I have some plans for expanding this blog, just a little.

      Where are you writing, if I am not already following you, I'd like to.

      Please share your link if you have one.

      Thank you for your support. ~Chrissy, Lupus Cloud