Back in 2012 I got my first migraine. We were on our way to Disneyland with our kids and out of the blue I was blindsided by a migraine. Form that time on I began having what they finally diagnosed as daily persistent headaches with migraines. I had been in and out of the doctors office up to this time but this began years of being ping-ponged back and forth between doctors and specialist. Each one would discover something they thought was causing the issue, or a “new” issue and quickly pass me off to a new doctor. For example, a MRI showed extra fluid in my brain so the general practitioner sent me to a neurologist, who then realized I had a fast heart rate, so bounced me to the cardiologist, who said my heart was fine so back to the neurologist…on and on it goes. I turned into a drug trial guinea pig and have had more images taken of me than Cindy Crawford. Her’s of course looked better and where of the exterior, but you get the picture. I would go to the doctors and try everything recommended only to have horrible side effects from the drugs, or see no improvement. I think one of the craziest side effects was not being able to taste carbonation, that was a little mind boggling. I would swear off going to the doctors and decide I would just make due and grin and bear it. Then things would get worse or I’d hear of a new treatment or…and I’d end up back at the doctors trying it all over again with the same outcome. I once heard someone describing living with ehlers-danlos (EDS) is like having your house on fire. The firefighter comes in and asks you what do you want me to put out first? You look around and see the drapes on fire and the flames are about to jump to your photo albums, but then again your kitchen is burning too and heading towards your bedroom. How do you decide what one to attack first? That’s what I was dealing with. At this point I hadn’t been diagnosed with EDS so I was still scrambling for a diagnosis. My headaches and migraines were bad but then my back would flare up and make it hard to move, or nausea would decide it was it’s turn to jump into the ring, blood pressure not wanting to be outdone would drop so low everything would start to fade away. Which one do you address first and are they all connected or all separate issues? In June of 2017 my back finally decided it was done. I woke up one morning and could barely move due to the pain. Come to find out a bulging disc was pushing up against my sciatic nerve. I wouldn’t recommend this experience to anyone.
My previous doctor had literally laughed at me when I was telling him about all my pain and what I was dealing with. He told me he’d do the imaging but “I’m not going to find anything. There’s nothing wrong with you.” After the imaging he stuck to his story even though in his notes he stated I had a bulging disc and degenerative discs. Didn’t find that out to later though. When my back went out I called him and they said the earliest they could get me in was 4 weeks. I explained I could barely move and they nonchalantly stated that was the soonest he could see me. Time for a new doctor. I called another doctor’s office that a friend recommended and they “just so happened” to have a cancellation and could see me the next day. Crazy how God “just so happens” to answer prayers. Went in to see him and his physician assistant (PA) and was blown away with the time and care they took. He looked at the previous imaging done and told me about the bulging disc and said that of course I’d be in pain based on my imaging. I know this may sound weird but when professionals tell you there’s no reason for your pain you start to think it’s all in your head and your going crazy. Just hearing him tell me that there was cause for my pain was a huge relief. As we sat there talking…well actually I was squatting because it was the only semi-comfortable position I could find, the PA mentioned EDS to the doctor. She noticed from how low I was able to squat that I was hyper-mobile. Long story shorter the determined I had EDS (see Ehlers-Danlos blog for more of the story). They did an epidural injection and I had immediate relief. It was so amazing! I even felt good enough to go out of town to my daughters softball game. I was so relieved that the injection was so successful. Unfortunately that only lasted a few days. On the way home from Faith’s game we were rear-ended. I was leaning forward when it happened so I did a full body whip lash. I instantly knew I was in trouble. They tried multiple steroid injections to try to undo the damage but I wasn’t getting any relief and the steroids were making me a little crazy. The only option left was surgery. Met with a neurosurgeon and found out that, according to him, my sciatic nerve was “royal pissed off” and my bulging disc had now ruptured. For Christmas that year I got a fusion of my L5-S1 vertebrae. Merry Christmas to me. The good news was they weren’t sure if my sciatic nerve would calm down after surgery or if the damage was permanent. Thank God it wasn’t permanent and it’s 90% better.
We have a tendency to look at life from the right now perspective. When the first doctor told me there was nothing wrong with me, which you think would be a good thing, I was devastated. I was so mad at him for not caring and for being so dismissive. When the second doctor told me I had EDS I was happy to finally have a diagnosis and validation of my pain, but yet devastated there is no cure and the fact it’s degenerative. Being four years removed from that situation I’m able to look back and see how God has used both of those instances to radically bless me and change my life. We don’t always get to see the why behind what God does. There’s still a lot of whys that are unanswered in my life. It’s important to cling to the whys He does answer as a reminder that He is listening and He does care. In Daniel chapter 9 he’s praying and seeking answers. The Angle Gabriel comes and says “At the beginning of your supplications the command and went out, and I have come to tell you, for you are greatly beloved….” vs 23a. “At the beginning”, God immediately acted as soon as Daniel started praying because he was “greatly beloved.” God hears you as soon as you start praying and knows what’s on your heart. Sometimes you may get an immediate answer. Other times it may take years, and sometimes we won’t know until we’re sitting at His feet in heaven. But either way “you are greatly beloved!” Regardless of how deafening the silence is do not forget you are loved.
There’s more to this story but to prevent this from becoming a book I’ll share the rest next time.
As always I’d love to hear from you. Please feel free to leave a comment below or send me an e-mail.