Everyone knows my family as the people who just seem to have a lot of random "bad luck." Not that I believe we're cursed or anything, but I would agree that crazy stuff tends to happen to us. It's like when you go to the doctor and they say "this could happen but there's only about a 1% chance;" we somehow always manage to squeeze our way into that 1%. Weekly phone calls with relatives tend to be "Nick's sick, Matt's getting sick, oh yeah Gabrielle's in the hospital and the dog probably needs to go to the ER as well." Ridiculous, I know. My mom always tells me one day she's going to write a book called "Are You Kidding Me?" because the things that happen to us, usually regarding me, are just completely unexplainable.
I'll try my best though to explain one of these incidents. Today was completely characterized by "are you kidding me?" While lately these days seem frequent, today definitely takes the cake. Since we've been in (for lack of a better term) medical hell with all of my health issues recently, we decided along with my doctor that getting some tests done to find out if I had food sensitivity or an absorption problem with my stomach would be a good idea. Little did I know that the tests we were running would be nothing other than complete stress and complication. While the place we're testing with only runs out of North Carolina, it was our job to send off all of the specimens ourselves after getting them at the hospital. I was not allowed to be on any of my medicine 5 days prior, something detrimental for an EDSer like me who needs medicine just to get through the day. The process of getting the lab work done and shipped was detailed and confusing, and my mom had spent hours on multiple phone calls with the company trying to get clarity on what we needed to do for this test.
After days of pain, discomfort, and little sleep due to lack of medicine, I was more than excited to get to the hospital and get the lab work over with. I was nervous, because I have a strong fear of needles, and because it is extremely hard to get blood from my veins because of my Ehlers Danlos Syndrome (ironic because I have to get blood drawn quite frequently). I hadn't eaten all day as I needed to fast, and I couldn't wait to get some food into my stomach, regardless of the stomach ache that may follow. I was sitting in a chair waiting for the lab technician when I overheard her talking to my mom. The details of the test were confusing, and they needed to call the company yet again to make sure we were doing it right. An hour of sitting and waiting in the hospital room went by before we found out that we didn't have enough time to get the lab work done and frozen before it closed. Frustration hit and the tears started to flow. Are you kidding me.
Crying and head hung low, I walked to the car with my mom. Another day without meds, another 12 hours of fasting, and another sleepless night waiting to figure out what the heck was wrong with my body, another moment of things not going my way. When you've been to doctor after doctor, hospital after hospital, constantly dealing with complications, the smallest things can be discouraging and upsetting, especially when you're exhausted. I closed my eyes and began praying, God, please just do something. Please please please.
To somebody else it may have all been good luck, but to me I knew it was divine intervention. My mom had called the company for probably the 10th time today and they said that the lab work would be okay to take straight home and freeze. PRAISE THE LORD!! It was another few hours and lots of tears and pain from the needle before we finally headed home, but it was over with and I could finally take some medicine and relax. The blood work had left me tired and a little faint and I couldn't wait to be home and in bed.
I was almost asleep before I heard my mom on the phone, yet again, sounding frustrated and annoyed. My poor mother. We were having problems with shipping, and if the lab work didn't go out in time, we would be forced to redo the test again which was not only exhausting and stressful, but expensive. Please God please just let it work out.
When I woke up I realized I had been out for a few hours. Napping is something I never do (shocking I know) and I felt extremely out of it and dizzy from the blood work and lack of food. I called my mom and she told me that the stuff for the test was to about be shipped and we were good to go. Thank goodness.
Just as I started to unwind I heard my mom on the phone, yet again. This time I could tell she was really not happy. It turns out that whoever was coming to pick up the lab work actually wasn't coming. We spent the next few hours frantically trying to figure out what we were going to do in order to refrain from having to do the whole process all over again. Are you SERIOUSLY kidding me.Eventually, however, it worked out and we found ourselves praying that the shipping would all go right.
It's days like these that remind me I don't truly believe in bad luck. Frustrating things happen sometimes- trust me I would know- but that doesn't mean it has anything to do with luck. I'm the queen of things not going my way; I have physical scars, discouraging stories, and records of hospital visits to prove it. I've literally had a surgery done before because I was in the "1% chance" of complications. Yet somehow, some way, we always get through. I know that the only reason anything has worked out okay is because of God. I know when I pray, He hears me. I know when I'm in pain, He's sad for me. I know when I look up and say "are you kidding me?" He looks at me and says "nope, but you're gonna be fine." And at the end of the day, all I can do is be thankful for what I've been given, and what my family has been given and maybe even laugh a little at all the ridiculousness.
The truth is, Ehlers Danlos Syndrome sucks, but everyday God takes care of me and keeps me going, I only hope I can give people some insight on what living with EDS everyday is like, because really, it's just a huge "are you kidding me?"
"The Lord is my rock, my fortress, and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold." Psalm 18:2