I decided to start a blog almost 6 years ago at this point. I had a number of reasons why I wanted to do it, but far too many road blocks that prevented me from getting to the starting line.
When I first started understanding – really understanding what was going on with my body, realizing that the doctors either didn’t know or were choosing not to tell me — I took matters into my own hands. Far more than the low maintenance research I had done previously, now I was asking my Dad for subscriptions to Medical Journals, access to the subscriptions he had. Asking doctors every question I could think of didn’t do much when they wouldn’t or couldn’t answer them. So I asked easier questions (“Explain what this word means?”) so that I would be able to understand an article or study I would then go home and finish reading for myself.
What ended up being more helpful than anything else, were OTHER WOMEN WITH LUPUS!! I got on forums and asked questions. I got answers. Not professional answers, as we would define them, but answers from other women who dealt with the same symptoms all the time. They would help me narrow down how I wanted to describe a symptom, this way the next time I went to a doctor I knew what I wanted to talk about. They helped me figure out home remedies for issues the doctors wouldn’t address. These online women sympathized, made me feel not alone, made me feel not crazy, made me feel like there was a lot of fun that can go into this nonsense… right at a point in my health where for the first time I was starting to doubt that. They didn’t let me falter or give up… at least not for more than a few paragraphs worth of rants. When it gets bad enough, when I’m so sick I wouldn’t even know where to begin explaining what’s going on with my body and in my head to my healthy friends, I have these women online (and a few men) that I can turn to and say hey today was….. a day… and they get it. I don’t have to explain. But if I do explain I know that they all get it.
These are what led to what I want to be able to do with my online presence, starting with my blog. Advocacy and Alliance within the auto-immune disease (and all disability) communities is important to educating the general public about our lives. The less privileged the normal people become in how they view/understand disability the more disability will integrate into our society. Ideally, we would no longer have a normal in the sense of able-bodied v. nonable-bodied individuals. But perhaps more importantly for me in the immediate sense is: if I can help one other person with a chronic illness feel less alone or answer some frustrating question that is bothering someone, then I did what all of those women did for me when I needed it. If I can help one person who is healthy understand what is is to be sick or what it is to live life like someone they care about does, then I gave that person a chance to see their loved one in a way the person with the chronic illness never thought they would make a connection with a healthy person that would allow for such insight. Those people would get a glimpse into growing up as my siblings or raising their children and watching them in pain like my parents did. If I can do any of these things then I succeeded in what I wanted to create this blog for.
I know I started thinking about this years ago. I finally got the ball rolling the summer of 2013!! When visiting with my extended family down South I spoke to a number of them about my interest in creating a blog and why. My family was supportive and with the added benefit of my Webmaster brother I was able to set-up this blog (as in he set it up after I told him what I wanted). He then (and is still) explaining step-by-step how I can best utilize my blog space for the message I want to get across! I am having fun figuring this “blogging thing” out. Especially as right now I have a lot of crazy things happening to me, but all of my down time is spent with me stuck in bed rather than out and about as I would prefer!! The blog gives me an outlet for my social butterfly tendencies and my all too talkative nature