It’s still a man’s world

I missed a call from the police department today. With a son with special needs living on his own, a newly licensed teenage son and a teenage daughter with mental health concerns, getting a voicemail with an officer/contact information but nothing else, that’s not cool!

I did what any mother would do and switched back and forth between attempting to reach the officer and my kids. Murphy’s Law: Once I got the kids checked off, I got through to the officer. He’s following up on a telecommunications harassment complaint.

To make a very long story short: I had to reprimand my daughter about something she posted on social media about the boy who randomly slid his hand up her shirt. Yes, HE harasses her, HE is dating her best friend since 1st grade and friend takes his side, HE bullies my daughter at school to intimidate her from talking, her mental health took a huge hit, I had to pull her out of the school, but she was reprimanded and had charges dangling over her head because of talking about it, yet this little fucker receives no consequences. His mother said, “My son wouldn’t do that”.

PARENTS: LISTEN! We’re all human and flawed. Yes, even your child. Believing that your child just simply isn’t capable of doing something is a poison like no other. If we do not have uncomfortable discussions with our children, we will only create monsters of privilege with no accountability. (See:Trump)

This whole situation is bringing up unpleasant memories. PTSD in full effect. I just don’t understand how this is still happening 20 years later?! That’s fucked up.

The conversation I had with her was to the point and unremarkable. The disgust and despair I feel for having to have had it at all … I don’t even have words to describe.

Jedi Gino

September is Childhood Cancer Awareness Month. Please read this one story and know there are many more. Be aware that children can’t fight cancer alone, it takes a village. They need you to help spread awareness, so that more than 4% of cancer research funds are allocated to childhood cancer, so new drugs are finally developed after no progress in 20 years. Please go GOLD for the kids this month. Wear it. Change your profile pic on social media. Start a conversation. Ask for gold ribbons at retailers. Tell them why. Change the world.

Stephieopolis

I don’t even know how to begin to say what I have experienced over the last few days. It was a love beyond what the word love can fully capture. There should be another word for that. Intimate? Yes, it was very intimate … and precious and heartbreaking and something I will never forget for as long as I live.

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Jedi’s best friend, Jedi Gino, left us today. His 10 year old body held a soul bigger than it could have possibly held, but it did. I’m sure the papers will say that our Jedi lost his battle to cancer today, but I can tell you that’s not true. The cancer won the battle with Gino’s little boy body, but his soul won the war. The war that tried to take over his  and his family’s life, it didn’t take his life. That boy was full of life. As I think…

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I’m not going to “get better” and it’s ok.

If you had asked me four years ago, when my failing health finally pushed me out of the workforce, what the hardest part about “being sick” was, I likely would’ve talked about the physical pain or mental anguish of facing my own mortality. Recently though, it’s been others’ response and receiving “feel better” sentiments. It’s not that I don’t appreciate them because I most certainly do appreciate anybody’s care and concern for me. It’s a cold world and any notion of warm in welcomed.

Maybe it was just easier to take ten years ago when I was hospitalized with “the unknown virus” and sky high fever for a week. Then the initial fibromyalgia diagnosis. Likely because that’s when I still believed I could get better. But when my miscarriage finally pushed my immune system out of whack and the vision loss pushed me over the mental edge, I was down for the count. It took another year before they found the antibodies and scleroderma attacking the tissue throughout my body, destroying my gastrointestinal tract and causing gastroparesis.

Now, the thing is … I’m not going to get better.

I realize people don’t want to hear this. I get that we wish things were different. People may even think I’m giving up, when in fact I’m simply giving in to the reality of my new life. This is something, through cycles of hoping and feeling disappointed, deciding to give up hope in order to avoid the pain of disappointment and the sadness and then the relief of surrender, that I’ve accepted in the years since my diagnosis.

This much I can tell you: Nonacceptance just increases suffering and I think the one thing we can all agree on, universally, is that we don’t wish to suffer. Acceptance doesn’t mean that I’m rolling over and taking it either.

It’s just that I have finally arrived at a point in my life that is all about accommodating to realities,  living a life worth living despite my limitations and appreciating so many ways in which I’ve “grown” only because of this illness. If it weren’t being trapped in my house and bound to my bed, I wouldn’t have realized how many of the little things I miss on a daily basis. Perhaps these are things that other people can appreciate without being sick and having so much time on their hands to roll things around in their brain, but for me, that’s what it took. For that, I’m actually very grateful.

Maybe at this point you are asking yourself what you should say or do if you have someone in your life with a chronic illness. The one thing I want you to take away from this is that we don’t need you to make it better.  We need your time, compassion and most importantly, your love. Only love can make it rain the way we need it to. Only love can quench the thirst we have for life that we may be having a hard time experiencing for ourselves. Texts and emails are great, but phone calls and visits are more sincere. Your time is such a precious gift of investment in our knowing our worth hasn’t diminished because of our illness.

Better a single day of life seeing the reality of arising and passing away than a hundred years of existence remaining blind to it.”—THE BUDDHA

Fat discrimination in healthcare

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I have to vent. I have to say this. This needs to be said.

I am sick and tired of doctors associating and dismissing everything if you are a patient who is overweight, to you being overweight.

Yes, I am overweight by medical standards. I know that. I know how much I weigh, I know my BMI. But I also know that I eat well and I exercise. So, while my weight may not fit into your box, if you actually looked at the food and exercise I log, instead of down your nose at me, you might discover something else. You know, something you might discover if you actually PRACTICE medicine. What if fat is a symptom and not the cause?

I have PCOS. I have autoimmune antibodies. Antibodies attacking my optic nerve. Antibodies attacking my connective tissue, scleroderma. Scleroderma has caused me to have gastroparesis. Gastroparesis makes me eat a low residue diet. Low fiber.

So when Im suffering from excruciating stomach pain and you look at me and assume I need to eat better, eat more fiber, that’s actually the WORST thing I could do. That would cause an obstruction. It could kill me. I know it goes against everything you’ve been taught about how the body works and what we should eat, but guess what? Its how MY body works. Try actually living against all the things you’ve been taught about eating.

All bodies are different and should be treated as such. I know you’re taught to look for horses and not zebras, but zebras exist. A zebra is never going to be a fucking horse no matter how much you try to make it one.

Rant over.