Show & Tell Tuesday: The Struggle is Real--Lupus

 Show and Tell Tuesday Graphic 2017

Twice a month, Andrea from MomFessionals hosts a link up where we show and tell you something. This is my first one and today's topic is The Struggle is Real.  

If you are new to Good Better Best, you might not know my struggle. The truth is I have Lupus and Sjogren's disease which are both autoimmune diseases. Most people have heard of Lupus, but probably couldn't tell you what it is...unless they watched House.

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Image result for lupus gif

And until Venus Williams announced in September 2011 that she was pulling out of the U.S. Open due to Sjogren's, probably no one had heard of that lovely disease either. But if you live in my house, you are only too aware of these conditions and my daily struggle. Basically, my body is in a constant war against itself not knowing what is disease and what is healthy tissue, so it just attacks it all.

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While I "don't look sick", which is something that people with invisible diseases like lupus hear a lot, the truth is I struggle with my health...every single day. Both of these conditions cause severe fatigue and joint pain for me as well as a host of other symptoms. When I say fatigue, it is not regular tired where I can take a nap and feel better, it is a level of tired where I almost feel car crash sore or like I have the flu on a lot of days. I have to be very careful when I get sick because a simple cold can easily turn into bronchitis or even pneumonia. If I do too much, literally I have episodes where I have trouble walking. Too much sun exposure will send me crawling into bed.

There is no cure for either lupus or Sjogren's and until the drug Benlysta (that I am currently on) was launched in 2011, there had not been a drug specifically to treat lupus in 50 years. I have been on Benlysta, which is currently administered by infusion, for about four and a half years. This means I go to the hospital every month and have Benlysta administered via an IV. The drug company is supposed to be introducing Benlysta as an injection that I could do at home soon which would be a lot Better.

Until then and until there is a cure for Lupus here is how I manage life and my health. I always take my medication. In addition to the infusions I have at the hospital, I take a variety of medications and supplements at home. I have also been gluten free for the last seven years. Avoiding gluten really helps my body function Better and my doctor and I do think there is something to this for autoimmune diseases. One of the Best ways for me to manage my disease activity is rest when I need it. Running Daddy is really Good about letting me go in and chill out in our room when I need to. But living with an autoimmune disease is a struggle every day.

I have to say, one the hardest things about living with a disease like lupus that people don't understand or having Sjogren's that most people have not heard of is that a lot of people say a lot of stupid and hurtful things to me about my disease. I know it is because they don't understand it but it is mind boggling how ridiculous people can be. About a million times I have heard "you don't look sick" or my favorite "oh well, that's not so least you don't have cancer." Um ok...I guess. I have people tell me "oh I know someone who had that and they are just fine" or the opposite "I know someone who had that and they died." My point in sharing this part of the struggle is that it's hard enough to for Running Daddy, Hockey Guy and I to manage this on a daily basis without people being flat out insensitive. Please, whenever someone tells you they are sick, just say you are sorry to hear that, ask if they need anything, offer a hug and then be quiet....

If you have read more than say two posts on this blog, you probably know that I have a pretty Good outlook on life, so there have been some of the Best people that have come into my world due to lupus. I have chosen to share my illness because I do have people write me privately from time to time to talk to me about lupus. It can be a very lonely and overwhelming disease especially in the beginning and I really feel it is my calling to help people the way that others helped me.

So this is my struggle. The struggle is every day and very real. I do my very Best every day to take Good care of myself and I think I rarely complain. I never feel sorry for myself and I truly believe that there are really smart people working to find a cure. If you want to learn more about lupus and my journey to my Benlysta treatment feel free to check out my two part series as a Guest Blogger for Despite Lupus. The link to part one is here and part two is here. I am always happy to help anyone who has questions about lupus, gluten free or autoimmune diseases so if you have any questions you can always email me privately through the contact form on the Good Better Best Food home page.

Thanks for being part of my first Show & Tell Tuesday!

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