When I say that I brought a “wagon filled load of records” I was not exaggerating… It took 2 weeks and 2 separate appointments for my new rheumatologist to be able to go through all of my medical history. The first appointment removed a weight off my chest that I didn’t even realize was there, or at least I didn’t realize was so heavy. If I ever wanted a confirmation that there is a purpose for everything, this appointment was it.
If you’ve been following along, then you probably understand by this point that I have a debilitating disease called Ehlers- Danlos Syndrome. EDS is a connective tissue disease that affects all of my joints and ligaments and so much more, you can read all about it on this page. EDS does affect a lot of things in my body, but since we’re talking about joints, let’s focus on them.
It is true my joints do go out more than I do. It is a daily occurrence in my body for one if not several of my joints to sublux (partially dislocate) or fully dislocate. Yes, it hurts. No, I’m not exaggerating. EDS is a not so fun diagnosis of mine.
EDS is also the reason I’m not crippled.
I know what you’re thinking, “Say what?”
My new rheumatologist knows a thing or two about both EDS and arthritis, for me this is golden! You see every other time a rheumatologist would examine me they would say, “Well, your joints are very mobile and therefore you can not have severe arthritis.” Defeated I would walk away from these appointments with no real answers or help. Arthritis has always been paired with the words “stiff joints.” For clarification, Ehlers Danlos has never been paired with the words “stiff joints.” Insert me…a medical conundrum since childhood.
So, back to my new rheumatologist and my first appointment with her…She did her full exam of me and then had me sit back down. She looked at me and she looked at my dad and she said EDS is the reason you’re not crippled.
Now, she had me, “Say what?”
Upon examination, she fully agreed that I have hypermobility/EDS, but she also felt a lot of swelling and heat coming from my joints.
If this was a kindergarten art lesson, then my clinical manifestations would be a purple color, if red represented my arthritis and blue represented my EDS. Basically, my EDS and my arthritis have been swirled together to make purple/the state of my joints.
I’ve always had doctors look at my arthritis or at my EDS, but never all together. My new rheumatologist saw all of it and informed me that in a way, my EDS has actually protected me. She went on to explain that since my arthritis is so severe and it started at such a young age, that if I didn’t have EDS, then I would most likely be crippled and already have had multiple joint replacements.
Without blue, my red would have just grown darker and darker, but with blue came extra mobility meaning the stiffness from red has been masked, creating a purple. I might have this awful disease that causes my joints to be extra mobile, I might be dislocating my joints more frequently than you eat food, but I’m not crippled.
I’ve never thought too highly of my purple because in the past it’s brought nothing but confusion and pain. But, after being told that it was because of me being purple that I am able to walk and even write this post, I now find myself thanking God that for my purple/confusing self.
It’s all about perspective folks. Perspective can change everything.
My second appointment brought a treatment plan for my swirled together symptoms. We needed something to treat everything and so our first step is indeed my old comrade, methotrexate. I will be administering the potent chemo drug via injection once a week.
I ask for prayers regarding the good and bad side effects of this drug. My rheumatologist has informed me that there is no more room for us to not do anything, so we are coming in swinging. I am confident that there is a purpose in this struggle, just as I was reminded that there is a purpose even in the worst of things/diseases.
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