Sorry about the false alarm earlier, everyone. I was about to edit this post and for some reason, it posted. It has been deleted and I had to start ALL OVER AGAIN. Thank God, I did not get further than a paragraph. Otherwise, I would have been kinda mad.
Well, if you have not noticed, the blog has a new name. For the longest time, I did not have one nor did I think one was required. But then, after reliving the horrible experiences I've had just being diagnosed with an autoimmune disorder, I wanted to share it with others.
So, I am...
I might shorten it later. For the time being, it fits. It has a lot of personal meaning to me. I think the first two words make sense - Chronically Writing is true is cliche as well as the truth. I am always thinking up stories, working out plots, and chilling in my office, writing. Wet Sand is the mystery, isn't it?
Not really. It's from a Red Hot Chili Peppers song by the same name. The metaphor (how I took it anyway) is forming under impossible situations and maturing past the trauma of our childhood and growing years. Wet sand can't help you with much unless you are able to overcome it with the tools around you. When everything is falling down around you, you have a couple of choices: stand in the storm and handle it the best way you can or you can fall apart and let the storm drown you.
So, after many years of being told one thing and then another, I have been finally diagnosed with Multiple Connective Tissue Disorder. There is info here about the disease, if you need a reference. In short, it is an autoimmune disorder which has components of several diseases, such as RA, lupus, etc. It comes with other disorders such as Raynaud's (which you can see more info about here) and Pulmonary Hypertension (which you can find out more about here). It has been debilitating and sometimes humiliating. It also puts a new perspective on everything in my life.
This is the first thing I hear. It has been told to me ever since I was young. If you all have not noticed, I am a plus sized woman. My body shape is not something I can control, although my weight has been fluctuating for many years. That is another story for another day.
That being said, when I am told to do something, I am going to do it. I am not big about asking for help. This happened when I lived with my family of origin. So, it's difficult to express my pain. Many people do not believe me when I say it because they see me perform so well. I've been told that my pain was in my head, that it's my stress, anything that did not refer to the ANA+ I received on a blood test.
When someone looks at me, they blame my weight immediately without asking me anything. They think that if I work harder, then I would lose that weight and get better. It is my fault that I am this big.
The truth is far from that. When I was younger, I was forced to constantly exercise and work on labor intensive activities. I was considered weak because of my "weight", when all I had was muscles, body shape and puberty against me. I was always told that I was unattractive, not trying enough, anything to keep me far away from the pretend goal of being thin and beautiful. To give you a hint of how far this went: I was punished for ridiculous things, like wanting to play with Barbies when a parent wanted me to watch the women's soccer game on TV.
No, I do not have diabetes. I am not at risk for stroke. I literally was given limited food and calorie counted, shamed for not liking sports and more. Honestly, I was praised in high school when I skipped breakfast and lunch (the latter at school) and only had a salad as a snack before dinner. I had a small portion for dinner and that was it. This kind of behavior went on even when I was pregnant and the few months I stayed after Calvin was born, until I left that nest. The times I was not at my place of residence, I ate whatever I wanted.
And the problem is, none of these tactics made me thin. Healthy food and regular exercise? All the way. With MCTD, I force myself to at least walk in my yard and do some chores. If I do not, I will gain weight and I have.
This is a trauma that I am still working through. It was a difficult time and one I realize now is narcissistic abuse. It is torture to question yourself and have to keep a happy face. This is something that I never want on anyone, not even my worst enemy.
At this time, I am fighting for treatment and I only have medication without refills unless I call my PCP (again). I do not want to get in to any specific details yet. For the moment, I am still processing this news. It is a relief to have a name. It is another to understand the disease on my own. Saying something now about it, after keeping it so locked up, is a weight off of my shoulders, though.
I hope all people like me read this and know that it is not their fault. It is not in your head. Keep advocating for yourself and never have someone tell you it's all wrong. This is a judgment free place!!
Because some days are going to be bad. REALLY bad. Like the "Author Confessions" post I made a few months ago. But some are also good, when you are hurting, but is is tolerable, and you are dancing. Those are the times we have to hope for.
I have decided that chronic illness is not defining me 100%. Like with trauma, I am not a victim. I am a survivor and swimming in new waters.
Yes, you do. You do matter too. Today is a good day to have a good day.