Friday, November 8, 2013

Excuse Me

I'm afraid that I wasn't clear with my post yesterday. That wasn't meant to be an incredibly negative post, believe it or not. I'm usually not a negative person, but a "strong" person. Or, so I'm told. I'm not sure if I believe that.

I was told that what I'm jokingly referring to as "Facebook Island" is self preservation. What I didn't delve into are all of the other reasons I set up that account.  The reasons that really don't have a thing to do with neurotypicality, other people's lives so much, or what is being deemed by some as pure negativity.

For the wonderful outpouring of support I received on my pages yesterday- thank you. 

One woman wrote me a message, which, in the beginning, summed up my current feelings perfectly: "I don't know you or your life..."

That is at the crux of how I feel for the people who want to call me negative. Who want to say that I need to put on a positive spin because "sometimes life sucks." Yes, life sucks sometimes, but what happens when you feel like you're at the end of your rope or beyond and it has nothing to do with an autism journey?

I was criticized for deactivating my personal Facebook page by people who don't know my life, but think that they do. I was judged unfairly.

Let me break this down... I've been on medication for the last two weeks to shrink my endometriosis, it's called Megace. I've talked about it on my Deciphering Morgan page. I mentioned it making me "nuttier than a fruitcake" in yesterday's post.

It's a drug which was supposed to shrink the endo in my body. It's also a drug which is used to treat cancer of the breast or uterus (i.e. tumors). I was taking it three times a day. 90 pills in three weeks is what I was supposed to take.  Until I couldn't take the side effects any longer. Click the hyperlink on the name, it gives you the lovely list of those.

What I left out is how bad the side effects have been for me. How I've been muscling through as best as I can, but I can't any longer. How I've now had to come off of those potential surgery avoiding drugs because of the fact that they were causing me to be incredibly fatigued, swell horribly to the point of more pain, and, the have uncontrollable massive anxiety attacks and the worst suicidal thoughts which even my anti anxiety drugs could not touch. How the pain was made worse, but I've just had to learn to live with it.

How that's the reason, in addition to so many others, I had to retreat from "full Facebook" for one week- and it didn't even last that long. Just one. I neglected to mention this because it's no one's damned business but my own. However, I figure that if one woman reading this is investigating it versus another drug or surgery for endo, she needs to know what it can do. Enough women have messaged me in the past two months about drug or other medical treatments for endo; this could be valuable information.

I've retreated from my friends and even family because I don't want them to see or know me like this. I don't want to be that asshole from the Giving Tree who kept taking until there was nothing left to take. Plus, there's that whole crying thing I've been doing in the last week and a half. Who wants that?

I prefer to be proactive enough about my life to know when my mental health isn't good and get help. Take a bit of a social media break. Find a happy place. Find an outlet. Hug my kids. Know what's worth living for.

But no, that's wrong.

This isn't "leaving anyone out of my journey," this is self-preservation and knowing when enough is enough and being afraid of even harsher judgement.

At the end of the day, I know where my positives are- my children, my husband, and my real friends. You know, my support network?

Sometimes, it's necessary to talk about things which are not pretty or uplifting. Kicking people when they are down is probably the lowest form of inhumanity I know. It does not move you higher up some imagined social media ladder- it only makes you look like a thoughtless jerk.

Everyone is going through their own journey. Some share it with a mediocum of grace, others do not know how. Choose your category.

Excuse me for telling my truth.


  1. are you KIDDING me? I was thinking about doing the same thing! I feel so left to the side by all my friends. I feel like they use me like those commercials for starving children in Africa. Just say 'Wow, so glad WE are blessed by God," and move on. All I want right now are the people who share this journey with me. Who know what it's like, and can sometimes one up me. I don't want to hear about the guy whose daughter went to the prom, or made honor roll, or any other bullshit that I'm sure he should feel proud of.

  2. No, I'm not kidding. The person who I quoted from is another autism "blogger." I'm angry and hurt enough to rant here on MY space about it. However, I'm not vindictive enough to publish screen shots or link back to that person. Funnily enough, people think this blogger is a sweet person. Odd how that happens.

  3. Sweet mother of pearl, I'm so sorry that happened to you. I have no words other than support for you doing whatever you need to do to take care of yourself and your family. WHATEVER it looks like. Keeping you in my prayers and thoughts.

  4. Yesterday, I logged back on to Facebook for the first time in a month. Usually, I can barely last a week or two. Had it not been for me needing to contact people for address so send birthday party invites to, I probably wouldn't have gone back. My leave this time was prompted by someone making me feel like an arse (highly doubt it was her intentions, but due to my having a bad week that week, it felt like it) after I shared -- with a select few people I thought would understand -- a link to one of my blog posts. The title, Am I My Child's Worst Enemy?, is self-descriptive. I was upset, every upset, and started in on a defensive mode about why I wrote what I did and why I do what I do. I knew both my words and my personal feelings would get worse if I stayed on, so I took a break. I needed it.

    I don't think that I, or you, or anyone else who takes breaks because of self-preservation needs to explain to anyone, but in a way, I am glad you did. The side effects you listed are some of what I get just with my regular period (mostly the depression and suicidal thoughts), and, well, since that's what I was going through a month ago, I had to get away from the naysayers. I am sorry you are struggling right now, but know that people who don't know you and aren't fully in your position (my child "only" has sensory processing disorder) do care about you and want you happy and healthy. :)

  5. Oh Jessi..........Lots of hugs to you! You don't need to explain, but you have probably helped someone out in using your journey for "good". If I didn't find blogs that also showed the "not polished side" of life - I would feel more alone and miserable than I already was when I started out on this path. Life is hard - period. If we only show one side, we are not truly being honest - and that's what I love about your writing & now having you as a friend. We all need each other to lean on at different times - that's how it works - to make us all stronger as a group........glad to have you in my group. Like I said before - do what you need to do for YOU...... everyone who matters will support you in that! *Ü*

  6. My gosh. You are not negative. You are REAL! There is a huge difference. I commend your honesty, and you have every right to do whatever is best for you and your family. I would much rather read a real person's blog, than someone who sugar coats everything all the time. Makes me feel like I am not the only one who struggles. By the way, you don't owe anyone anything! You rock Jessi. Remember that.

  7. Jessi, I did not see your other post, (I will read it when my mind is not so frazzled.) but I do appreciate your journey and all that you share. I wish I had better words to write - I am sorry for all that you are going through and for you to be able to share and be as honest as you are through all of this does show a woman of great strength. You have to have your space and feel the freedom to share what goes on your space.

    I am not sure if my words are of any comfort but, I can send some virtual (((hugs))) I am good at that. :-)

  8. I'm such a new fan over these 2 posts! Blessings!

  9. This is off topic, but I just found your blog and ate it up. I know your pain, I mean I KNOW your pain!!!! I have terminal cancer. It's torture. Your body betrays you. It literally is trying to kill you. And through it all I smile for my kids, 2 with autism nod numerous other disabilities. Some days dear friend, it's all I have to get out of bed... Some days I'm just done. I know we keep going for them. Thank you for your raw honesty in your journey.

  10. I love you!!! You know where to find me too. I'm here for you, regardless of what those who don't know better say. You know your life, what's going on, what you need to do for you and your own. Stay strong mama!! <3 <3 <3

  11. I just want you to know I completely understand where you are coming from Jessi. (And don't feed the trolls). You help so many, when you don't have to. They should be appreciative and respectful of that. Huge hugs for your honesty, bravery, and kind heart.