A Rant: So Disappointed in So-Called Friends and Others

Happy Sunday! I apologize in advance for the length of this post. I need to get these words out, get them out into the universe and out of my mind and spirit.

As you may know by now I try to keep my blog and social media stuff very positive. It's the way I choose to live my life. Happiness, humor, sharing times with friends, and love are all choices that I have consciously made. Today I experienced something that made me realize that my choices have made in the pursuit of happiness has given off an impression that is not true.

Here is my truth: I am still very sick. I can't work because I can't stay awake for a full day. I take over twenty different prescriptions a day and NONE of those are pain medications. That's what I take to stay alive. Most days I can barely get from my bed to my couch. I throw up daily and no one knows why. I get by on beef jerky for protein and saltines to keep my stomach somewhat steady. I have such obvious tremors that I drop things and spill all over the place. I've developed such bad neuropathy that it literally hurts to stand because my feet hurt so much. In the last year, I almost died three times. That's not an exaggeration. I went through three months of chemotherapy and while it worked to repair a major issue, the damage that I suffered to my organs is permanent. Want to know what my list of diseases are?

I have severe, organ-threatening lupus. That's not me exaggerating, that is how I am objectively categorized by multiple specialists. I am Lupus (obviously), Sjogren's syndrome, micro vascular angina, chronic tachycardia, vasculopathy of the brain, vasculitis of the colon, gastrointestinal issues that were caused by the vasculitis and the treatments for it, nasal ulcers, autonomic neuropathy, chemo brain (loss of memory and some cognitive issues), fibromyalgia, steroid-induced diabetes, swelling and inflammation of my joints, chronic fatigue (damn near narcoleptic), easy bruising (I've got two on my left leg that I've had since May) depression caused by all of the above, anxiety, and much more.

I am fortunate that I am able to experience good times in the midst of the hell that I live through on a regular basis. I like to share those moments with my friends and loved ones. Last year, I was forbidden my doctors to travel at all because the risk of me getting seriously sick or injured was too great.

Despite that, I chose to live my life. I celebrated the love of two wonderful people at their wedding. I celebrated one of my closest friendships and the sadness of my bestie moving away at a party in a bar. This year, I went to New York - my home state and where I lived for 27 years - for two weeks. I've shared all of that with my readers because those are the shining moments in my life. But that all came at a price. I didn't share with you how at the wedding that other than the portions I absolutely had to attend I was in bed crying from the excruciating pain I felt. I didn't share with you that I normally drink water wherever I go and that I left my best friend's going away party because my legs were killing me and I was so dizzy that I was afraid I was going to pass out. And New York - I spent most days in bed - my joints were so swollen that I could barely walk, I threw up many times, and I spent a good portion of my time sleeping.

I think you'd all hate me if I posted about that kind of thing on a regular basis. It's depressing. I don't like thinking or talking about it, so I wouldn't subject you to reading about it. It's a conscious decision.

But here is another truth, since there seems to be some confusion. Even though I don't talk about it, I feel terrible most days. I consider any day that I can get out of bed, shower on my own and somehow make it to the couch a win. Days I actually talk to someone other than instant messaging is huge. Seeing a friend? It makes my life because most of the time I have to cancel due to both feeling terrible and the anxiety I have about going out, getting sick and not knowing how to handle it. I've given up on wearing what I like to call real clothes. I haven't bothered to cut, color or style my hair in at least eight months. I'm sure I've blogged before about how 2013 was my personal version of hell. lost my career, friendships, my autonomy and independence...not to mention the weeks where I lost the ability to walk on my own, feed myself, or take care of myself. I lost all of that to a disease that has not cure and over which I have no control.  I still have my walker, Luke (as in Sky walker), my cane is always in the trunk of my car.

But you know what? This is my life. I only have one, and as I learned in the last year, the reality is that something could happen at any moment. I CHOOSE to focus on the positive. I choose to document the times when I feel good enough to put on makeup, wear real clothes and interact with people because I NEED those memories and experiences to keep me going during the worst of times. And even though I'm doing "better" those dark times are always near. My better is many people's worst nightmare.

Today I'm beyond disappointed and hurt that so-called friends and others would look at those posts and images as fodder for gossip. Revisionist history and the need to focus on me at all is pathetic, pitiful, deplorable, and contemptible. And frankly, it's sad and it says a lot more about these persons than it does about me.

Over the last several years, I've come to understand things about my professional career that truly wound me. It's a shame that people and organizations in the nonprofit sector are so far detached from the reality of the day to day life of the people they serve. That detachment leads to misunderstandings and a lack of sympathy and/or empathy for the causes that they are championing. It is sickening.

As a person living with a disease and a passionate advocate, I made the choice very early on to be open about my diseases and experiences. I still maintain that this kind of dialogue - both with others going through the same thing and people who have no connection to the diseases at all - will open minds, educate people and ultimately lead to the kind of awareness that will bring us closer to a cure.

I believe in honesty, transparency, respect, and the dignity and worth of all beings as the cornerstones of my core beliefs as a person. And while I rant about politics, am incredibly sarcastic and sometimes use foul language, I still maintain a level of positive actions and thoughts in my life. Because I need it. I need it to stay sane in a world that has almost destroyed me, my family and friends. And part of the way I keep that going is through documenting my positive experiences in my blog and other social media outlets.

For someone to see those images and think that my life is roses, that I'm having a good old time while not working, that perhaps I'm either understating or faking my disease -- well, they are the one with
issues. Not me.

So in closing, you know who you are and you know what you did. The truth is that I've spent entirely too much time, energy and emotion on you and your actions. You're not worth it. The situation is unworthy of you and frankly a waste of my time. Have fun with that.