Its scary being me sometimes.
Things that you find easy to do can be extremely hard or painful for me. I thought (for the first 13 years of my life) that i was just a clumsy wimpy kid who is somehow always accumulating bruises. That is, until I hurt myself at Youth Camp 2009, and I wasn't healing correctly. It got to the point of where I could not walk without being in extreme pain.
For the next few months, I would have 3 x-rays, 2 MRI's, and talked to numerous doctors and various specialists. They all said (virtually) the same thing: "There is nothing wrong with you, it's all in your head." After being told that over and over, you kind of start doubting your sanity. and worrying. I mean, you're telling this to a (very) impressionable 13/14 year old child. Of course the first thing I think is that I'm being over dramatic. Thankfully we found a doctor who diagnosed my issue as a bruise under my kneecap that wouldn't go away. The treatment: physical therapy. This started about 3 months of pure torture where the bruise was worked out, and my knee slowly healed. Well that was that right?
Wrong. Something went wrong again. Extreme pain is not a lovely thing, so I got another MRI to see what was up in my knee. Welp nothing showed up and I was told again that it was all in my head. Do you know how frustrating that is?! Imagine this, you are in excruciating pain, but you are basically told that you are being dramatic and there is nothing wrong with you. I kinda withdrew from people (at least inwardly... i kept up outer appearances) I started doubting, crying, etc. Physical therapy was happening again to keep working my knee. It hurt really bad and i was absolutely miserable.
We went to a geneticist to see if they could diagnose anything wrong with me. I believe this was late 2010, early 2011 (its all blurry now). That is when I was diagnosed with something called Ehlers-Danlos Syndrome and connective tissue disorder (basically the same thing). That is all they told me. Oh yes, they also said to google them to find out more. Don't EVER google something you are diagnosed with. That set off about a year of immense anxiety attacks, depression (I hate saying it, but I don't know what else to call it), and no incentive to really continue doing anything. I didn't want to be alive anymore. I mean I was broken, and can't be fixed what was the use of doing anything? This started me off on a very self destructive course. I won't say much of what happened because i'm still sore about it, but the mind convinces you of many strange and harmful things.
Let me start off by saying: hurting yourself is NEVER the answer. I would have times where the overall pain in my body was unbearable. Did I tell anyone? no. I somehow convinced myself that me causing pain to myself is controlling and liberating. (no i'm not telling you what I did) Needless to say, I have many unnecessary scars that could have been avoided.... I was grasping at straws trying to stabilize my life. Find steady ground or normalness somehow. No matter what I tried, it didn't work. I felt like I was cut adrift from the world and that no one loved or wanted me. Which was an absolute lie. How did I get out of this melancholy? I honestly have no clue, other than the grace of God.
I was banned from googling my disease, and the anxiety attacks lessened. Alright, so I have this weird degenerative disease that no one really knows a whole lot about, that's all that's wrong with me right?
Wrong. I won't tell the entire (LONG) story, but here is what else I am diagnosed with. Because of the Ehlers-Danlos Syndrome, I am living in constant excruciating pain. I dislocate my joints randomly. Try just standing up and having your hip dislocate on you. Coughing, and having a rib dislocate. Picking something awkward up at work, and having your entire shoulder dislocate. Walking, and having your ankles popping in and out. Chewing or talking, and having your jaw constantly catch. (It is either stuck closed, or stuck open). Chronic migraines. (They are very bad)
How about having too straight of a neck. that doesn't sound too bad right?
Wrong. Imagine hanging out with your friends laughing and having a good time. Wake up the next morning and you feel like somebody is taking a jack hammer to your head or that your head is going to implode/explode. Yes, I get migraines from laughing too much, weather changes, light, not enough sleep, too much sleep, not enough protein, not enough water, etc. So basically anything can set off migraines because my neck is too straight,
Oh, while at the spine area, I have scoliosis (unnatural curvature of the spine) in two different places in my back. The curvature (last time they checked) was just under when they recommend surgery. So basically it feels like I constantly have a kink in my back that I am unable to get out. Also, my back muscles are constantly sore.
I tore my ACL in 2013, and had another surgery in 2014 (on the same knee) to fix a problem. I was in physical therapy for about a year trying to rehab my knee back to normal. When I snapped my ACL, I also slightly tore the MCL and LCL, slightly tore the patella tendon, chipped the patella, had bone bruising and chipping on the upper and lower leg bones, and slightly tore the meniscus. (I did that all at the same time..)
Since I was diagnosed with Ehlers-Danlos Syndrome, my vision has been slowly deteriorating, I had 20/20 vision in 2009, and now i have glasses, and it keeps deteriorating slowly. I would tell you what my vision is now, but I honestly forget. I also suffer from insomnia, which is very irritating and draining for me. I'm probably forgetting something, but this is more than enough for you to think about.
Alright, now take everything I wrote above and just for one second imagine what a day for me is like. A good day involves me dislocating only two joints,and being able to ignore the pain for most of the day (pain medication does not really help me). A bad day? I dont want to get out of bed in the morning. Not because i don't have anything to do or I'm being lazy, but because I hurt too much and have probably had barely any sleep. Moving sometimes takes so much energy and willpower. On those days, I tend to be very quiet, and withdrawn from people. It takes a lot of focus to function without breaking down, I sometimes have no energy left to deal with people.
Would I change all this? Make myself perfectly healthy and 'normal' if I could? Absolutely not! I have met God during this trial. I have learned to be content, and see joy and wonder in the little things. I have learned to celebrate every little victory, and most importantly, I have learned that God is ALWAYS by my side no matter what. I have learned that prayer is a most wondrous and powerful thing, and is a sharp sword. I have learned to be sympathetic towards people. I have learned to approach my God humbly, and I have learned to pray big prayers. God has created a most complex thing, called a human body, and whoever designed something as delicate and as complex as this, can do ANYTHING. So don't be scared to pray big prayers. We have a BIG God who is able to do even greater things than we can imagine.
I have come to terms with this illness. It is something that is incurable, and I will live with it the rest of my life. I rejoice in this trial.But I know that I do not always have the best reactions sometimes. Yes I can be grumpy, short tempered, anxious, super stressed, terrified, and short. But in the end, I know this is for God's will. I will never know God's reasoning for giving me this disease, at least not on this side of eternity. But I know that he is with me.
"No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it." ~1 Corinthians 10:13
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