Be Kind or Be Quiet...

In the last 30 days there have been to what seems like just as many appointments. I am tired. It is currently 8:30 in the morning. I left the house at 7 and I will be back to the house by 10. I forgot to take my meds before I left the house this morning. I hate early morning appointments; but if they are scheduled later, the entire day goes to waste. Today's appointment just requires that I am chauffeur. Not taking meds before I left the house, is likely to bite me in the @$$ later. Aetna knows better than my doctor, so what should be my meds is not. Ehlers-danlos Syndrome/Hyper-mobility Syndrome Not Otherwise Specified (as Dr. Gamble puts it, "If I say it is Ehlers-danlos syndrome nobody knows what it is, Hyper-mobility is self explanatory, it makes no difference what I call it as long as I treat it the same")... call it what you want,has left me depleted. I'm tired and everything ALWAYS hurts. My joints, all of them are causing cascading failures. I saw this post to the left last night on Facebook, and in made me mad. I bit my tongue and practiced the art of keep scrolling... Instead I am just addressing it in a blog post today. Oh the irony.

Yes, yes actually my genetics really do suck. Yes, there are literally things missing from my life because of my genetics. I know the person who posted it meant well. I know they were trying to be encouraging and motivating. I just have a hard time finding blanket judgmental statements as motivating. No, Monday doesn't suck, it was a beautiful quiet day. The weather was gorgeous. My husband was and still is amazing! On Monday though the nerve pain in my left leg, because of my genetic condition, was so much I cried myself to a very restless sleep. On Monday even though the weather was BEAUTIFUL I didn't walk down to the garden to pick vegetables, because my hip was dislocated, again. This photo to the left is where I sat and waited today because yes, my genetics suck. Only I sat here and waited not for me but for my son. Because, well you know, genetics. (Don't worry, he is fine, just going to what will be one of a million appointments because of his genetics.) At 12 years old my daughter could tell you she will adopt children, because she won't want to pass her genetics down to her kids. At 12 years old she knew pain that most adults never will.  At 10 years old sitting with the Geneticist we were told, "At 12 we just automatically refer the girls with this condition to the pain management specialist."


My point in all of this guys BE KIND OR BE QUIET. It really is that simple. You don't know what everyone is dealing with. Remember, social media is the highlight reel. It is the echo chamber of opinions and facts that seemingly are interchangeable. Before you post something on social media pause and think, is this going to help someone or hurt someone. In a virtual world where the only way we "get social interaction" is to scroll through Facebook, Instagram, or Twitter, BE KIND.