I have a hard time being honest about my health to others because 1) I don't want to scare or worry those I love 2) Everything is so complicated and not very interesting to most people 3) I don't want people to question my faith or doubt my hope and positiveness and 4) I really really have waited this long to even tell a lot of people or seek help because I didn't want to come across that I'm weak, or I'm doing it for attention, or trying to play the victim.
Unfortunately when health gets so debilitating it consumes your whole being and life where you can't function or do anything you used to, it's kinda hard to continue to just grin and bear it or pretend anymore.
Plus, God really put it on my heart I needed to start sharing. It still makes me nervous every time I push post to put any of this, or me, out there, BUT it if helps just one person get diagnosed early and not to have to go through years and years of pain and terrible symptoms, doctors not knowing what's wrong, or making you doubt and feel like it's in your head, then I need to suck up my uncomfortableness and do it.
You know for so long I just wanted answers so that I could fix my issues and just move on with my life. Answers aren't always easy to take when you learn what you have is a rare chronic illness that is only going to get worse called Ehlers Danlos Syndrome. Then when you find out more, that what's causing your pain isn't the 1 thing you thought it now could be, pelvic congestion syndrome, but actually 5 compressions including pelvic congestion syndrome, I have to admit that was pretty overwhelming and discouraging. It's taken a lot of praying, reading the Bible, seeking out guidance and inspiration, and leaning on my loved ones. And if I'm really honest, it's my two little girls and husband who make me never think twice about giving up. Sometimes I just need a minute to cry and talk to God and figure out how I'm going to keep in this fight.
I had a realization though that if I don't share just how real, and scary, and dangerous, and hard all my health issues are, how is anyone going to see all the blessings and my testimony of what He has, and is doing?
With this honesty I wanted to share other people's stories of what they are going through with these illnesses and I'm so proud of them for taking the leap to spread awareness. Because even after diagnosis, no one knows anything about any of these vascular compressions. Scans are reported normal when the proof couldn't be more evident. Doctors or nurses don't believe when there really is an emergency and you want to be proactive and save your life, but how, when no one knows enough about MALS, or SMAS, or NCS, or MTS, or PCS. I wish those were only my health problems, but the fact is I have like 10 more (that I even know of and have been diagnosed with at the moment).
Without further adieu, here's the other stories similar to mine motivating me in my current journey of figuring it out. I will continue to add more here as I come across.
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