Let the journey be shaped by the curiousity of the child…
A lot has happened lately. We have enjoyed summertime and as always we combined our learning with our interests and did a lot of fun stuff. But that is not all. Healthwise has been and still is a challenge. A lot has happened which has refrained me from writing anything at all.
Almost four weeks ago I got a sweet hug filled with love from one of the boys. During that hug, something in my neck snapped. Having Ehlers Danlos, things can get hurt or bruise more easily in my body. For anyone who is not familiar with Ehlers Danlos, it is an inherited connective tissue disorder, caused by various defects in the synthesis of collagen.
After that sweet hug I was in so much pain, I couldn’t sleep. As soon as I could I called my neurologist and he told me to get an MRI as soon as possible. After having talked to the insurance company we headed to the ER, where they spoke to the insurance company again and went ahead and did the MRI. Result: a couple of herniated discs and an inflammation. I got some pain killers, a muscle relaxer and anti-inflammatory meds and a referral to a neurosurgeon.
I had to wait 3 weeks before the neurosurgeon could see me! 😳😱 It was awful. The pain was (is) excruciating. I even started throwing up because of it. After two weeks I ran out of pain killers and muscle relaxer and I went back to the ER. There they submitted me and gave me an IV with pain meds. This knocked me out, which was kind of nice. Not being awake also meant no pain.
Finally, after three long weeks I had my appointment with the neurosurgeon and she had another look at the MRI. She told me I had a degenerative disease of the spine, a couple of herniated discs in my neck and an inflammation.
There were two options.
1. The less invasive, which would be injections; or
2. Surgery, where they would remove the herniated discs.
Dad started asking questions about the injections in combination with Ehlers Danlos. Did she know if it would work? She couldn’t give us an answer that could satisfy us and we were wondering if she had ever heard of Ehlers Danlos. She had heard of Reflex Symphatic Dystrofy, something that had took me ten years to recover from.
So what to do, what to do? Physical therapy, chiropractor…
The neurosurgeon told us it will not improve, it will not get better. It will only get worse. All she can do is pain management.
Talking about pain management here. It is difficult to get a hold of your pain meds, since I don’t have a primary care giver. For me it feels like I have to beg for the pain meds, which makes me feel like a junkie or something. Not a feeling I like. My mind goes back to episodes of dr Gregory House and his Vicodin.
My insurance company is discussing what to do. Giving an ok for the injections, for the surgery or if they are going to repatriate me to my home country. Next week I will know more.
Being in so much pain and taking strong pain medication, plays tricks with my mind. The meds give me nightmares and the weirdest dreams. The pain makes me want to be able to make wishes come true and I’m repeating this mantra: “Today, I am healed.”
It also makes me think of the Ehlers Danlos, the degenerative spine. What will my future look like? What things do I like to tell my children? Do I want to write those things down?
For so far the update! For day-to-day pictures. Follow us on Instagram. I do try to post pictures regularly.