(TW: Medical, Emotional)
I just wanted to start out by saying that I’m sorry I missed my normal Sunday post last night. I was incredibly stressed out, and it had completely slipped my mind until I was falling asleep, and by then, although I did have something written out that I still plan to share, I was just too exhausted. Today, however, I think I have good news that needs to be celebrated. And while I understand that it’s not typical to celebrate being diagnosed with an incurable connective tissue disorder that I’ve had my whole life, and will have my whole life, today I met with the rheumatologist for the very first time, and he officially diagnosed me with something called EDS or Ehlers Danlos Syndrome.
To say that I’m feeling extremely emotional would be an understatement.
So, what is it? According to Dr. Google (who isn’t actually a doctor and doesn’t know everything) EDS is a rare group of inherited disorders that affect our connective tissues, primarily the skin, joints, and blood vessel walls. There are many different subtypes, each will their own set of symptoms, although all of them are fairly similar- finding out which subtype, however, is fairly important for finding a proper course of treatment. We seem to think right now that I have the hEDS or hypermobile subtype, due to my extreme hypermobility, and a various array of other symptoms that I experience. And I’ve found some absolutely fantastic information online since first hearing about this condition through my physical therapist who, originally thought to bring it up to me after my injury in 2020. But, as you know, the internet doesn’t know everything so over the next few months, years, and probably so on after that, I’ll have quite a lot to learn! In the meantime, there are a few things that I would really like to say about my doctor, seeing as I complain about doctors a lot, and I don’t often have a whole lot of good to say about them!
Today, my appointment was originally scheduled for 3pm, so when I was still sitting in the waiting area around 3:45pm, despite getting there over 20-minutes early to fill out paperwork, I was frustrated. More than frustrated because, more than once did I turn to Angel and tell her that it was absurd that most times you cannot be more than 6-minutes late to a doctor’s appointment without them cancelling on you, and still billing your insurance a ridiculous amount of money; yet they’re allowed to be as late as they want to! However, I do have to say that after today, meeting this doctor, and spending almost an hour and a half with them I get it. Dr. H is amazing.
I was initially brought back to the room by a medical assistant, who was really friendly. They asked if it was okay for me to have an observer in the room, and by then I was cranky, so I told them that I’m not often very nice to medical students. (Most of the medical students I’ve met have completely disregarded my experience as a chronically ill person and dehumanized me.) This was nothing like the experiences I’ve had before. The medical assistant, who’s name I’d unfortunately not gotten, laughed, and said, “Good! Someone has to keep him in line.” And that made my head spin. Normally, they make a snide comment about how else will they learn, or find a way to gaslight me, and make me feel uncomfortable about not wanting a stranger in my room, so I let them stay.
They had questions. So many questions, all of which I explained to my best ability. I also gave them my referral for EDS testing, and told them that, this is what I needed to be tested for. Originally, I think they were a bit hesitant because some people think that EDS is some kind of “trending TikTok disease” as I’ve seen it be called on Reddit, or that it’s so rare, it’s almost impossible to have. They made it sound like a process of elimination, which I get that for most people, it probably is. Yet, for me, it isn’t. I’ve had all of the autoimmune panels done. All of the blood tests. I have quite literally had them all, ruling out everything from the C-word that we don’t say to Lupus. From there, I brought up my hypermobility, and “unpacked” all of what I like to call my party tricks. Fingers that bend backwards when I extend my hand fully, the thumb that is essentially not attached. I dislocated one of my fingers (which I know I shouldn’t have done but, still.) I showed them how I can “take off” my kneecaps, also, where they’re basically just floating around and hardly holding onto anything. They checked my elbows for hypermobility, which there isn’t much of, although once the doctor came in said was definitely there, as well as my shoulders, and finally I showed them how my knees hyperextend backwards like a parenthesis symbol.
I was seen today, and I was heard, and that’s something I’m still trying to wrap my mind around.
Dr. H’s bedside manner is more than I ever could have hoped for. Not only did he sit there with me for an hour and a half and go over my medical history but, he also examined my hands and fingers thoroughly, checked out my wrists and elbows. He maneuvered my shoulders around and watched as I “took off” my kneecaps, hyperextended, and crunched my ankles as well as everything else. He wanted to see my party tricks, check my joints, and see how bad my ligaments are. (The answer is fucking terrible.) And by the end of the appointment, there was one thing that he’d said that I don’t think I’ll forget for awhile. It’s the only thing that played through my head on the drive home, “You definitely have EDS, and now it’s my job to give you the care you deserve.” After such a long journey, and such a long time trying to get doctors to hear me, see me, and take me seriously because my body is anything but “normal” I swear to God I could cry.
Literally. I feel like crying. (Not only because I’m in a serious amount of pain either.)
I get it, in medical school they’re told, “When you hear hoofbeats in the hall, don’t look for zebras.” Because, sure, a lot of the times, you should think about a more common, and potentially more likely diagnosis. But, as for me, I guess I’m a zebra. Our next course of action is to get back the results of the blood tests I had in the office today, and then next week I’m getting x-rayed nearly from head to toe. It’s time to figure out what’s going on inside of me, that way we can find out what the best course of treatment will be. I’m fully expecting more Physical Therapy, which was fairly obvious from the get-go after he explained how important that PT is for EDSers like me. Aside from that, there’s always more stabilization braces, mobility aids, and medications. That’s the beauty (and terror) or modern medicine, it’s evolving all the time.
Now, let’s hope tomorrow goes just as well… I’m back in Chicago at Rush University to see the pain management doctor, who has quite a few things to answer for, starting with the stitches that I am still having to pick out of my back. Especially the perfect triple knot that I pulled out, and was embedded in my skin- and before you ask, they aren’t the kind of stitches that dissolve, they’re the kind that he was supposed to remove on September 27th, and said that he had removed, when really he’d just cut the ends without pulling them out of my skin. I’m kind of scared to see how many more are embedded in my skin- if being able to feel them under there is any indication, I think the answer is a lot.
Not all doctors are good doctors but, Dr. H. may just be one of the best that I’ve ever seen.
-Sky
Skyla N. Lambert
Author | Blogger | Bookworm
E. skylanarissalambert@gmail.com
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