One year ago today I finally started to get answers. One year ago today I was tested. One year ago today I began a path down a road I had never even thought about for myself. One year ago today, I was finally heard.
Last year, at the insistence of my then-surgeon, I saw a rheumatologist. Again. While I wasn't overly impressed with her, I was very impressed with her supervisor (she was a Fellow who needed to consult on each case) who came in and so quickly figured things out, that it was a rather unreal experience. At one point, this man, this experienced genius who listened, turned and said to her: "Isn't it obvious?" Shoot, I wish it had been so I didn't have to suffer in the dark for over two decades! But I digress...
Anyway, this man asks a bunch of questions, pokes, pulls, etc., then smiles to himself as I answer, confirming in his head what he suspects. They leave together, and after what felt like an eternity, they come back and start talking about a potential diagnosis and meds and testing and my head starts swimming. I'm a fairly educated and cultured woman, but I had never heard of this disease, let alone pronounce it: Axial Spondyoarthropathy. Yikes, what a mouthful! I had to have her repeat it so I could write it down. Let's jump ahead to those tests and those drugs. Tests showed inflammation so damn high it was a miracle I could move. As for those drugs, well, after fighting with my insurance over pointless shit, I got them, used them (boy, was THAT an adjustment!), and began to feel a bit better. Then I wound up being allergic to them... but that's another story! Hahaha!
So began my journey into the world of autoimmune diseases, which paved the way for me getting diagnosed with other fun stuff. For those of you uninterested in researching what I have but curious enough to want to know, this is similar to Ankylosing Spondylitis. It's sort of its cousin's milder form. But make no mistake, this is a serious degenerative disease and I will need to be on meds my whole life. Could it be a better diagnosis? Sure, who doesn't hope for something mild or nothing at all? Could it be much worse? Um, definitely! Am I scared? HELL. YES. But am I happy I finally have an answer and am not being ignored? You can't even imagine. This man, Dr. Gary Solomon, changed my life, and for that, I am so very grateful.
It's a sad state our world is in when someone is left to suffer for so long, whether it's from illness, loneliness, or anything, really. We humans tend to forget that others are in just as much need as we are. Why do we always brush people and things off? I know my story is similar to other's. I write this in hopes that someone might be inspired to speak up for themselves at their next doctor visit. You must be your own advocate, and you cannot settle for "I don't know what's wrong with you". If someone says that to you, you must respond with "Then please direct me to someone you can help me". There is nothing wrong with that. I won't lie and say constantly arguing with and seeing new doctors wasn't stressful, but I never considered giving up. I knew something was wrong. I'd known almost my whole life. Trust yourself, and don't let anyone shut you up until you have the answers you seek!
I would love to hear your story, whatever stage it's in. Please leave a comment and let's support each other's search for answers!
Very warmly,
Susan
Last year, at the insistence of my then-surgeon, I saw a rheumatologist. Again. While I wasn't overly impressed with her, I was very impressed with her supervisor (she was a Fellow who needed to consult on each case) who came in and so quickly figured things out, that it was a rather unreal experience. At one point, this man, this experienced genius who listened, turned and said to her: "Isn't it obvious?" Shoot, I wish it had been so I didn't have to suffer in the dark for over two decades! But I digress...
Anyway, this man asks a bunch of questions, pokes, pulls, etc., then smiles to himself as I answer, confirming in his head what he suspects. They leave together, and after what felt like an eternity, they come back and start talking about a potential diagnosis and meds and testing and my head starts swimming. I'm a fairly educated and cultured woman, but I had never heard of this disease, let alone pronounce it: Axial Spondyoarthropathy. Yikes, what a mouthful! I had to have her repeat it so I could write it down. Let's jump ahead to those tests and those drugs. Tests showed inflammation so damn high it was a miracle I could move. As for those drugs, well, after fighting with my insurance over pointless shit, I got them, used them (boy, was THAT an adjustment!), and began to feel a bit better. Then I wound up being allergic to them... but that's another story! Hahaha!
So began my journey into the world of autoimmune diseases, which paved the way for me getting diagnosed with other fun stuff. For those of you uninterested in researching what I have but curious enough to want to know, this is similar to Ankylosing Spondylitis. It's sort of its cousin's milder form. But make no mistake, this is a serious degenerative disease and I will need to be on meds my whole life. Could it be a better diagnosis? Sure, who doesn't hope for something mild or nothing at all? Could it be much worse? Um, definitely! Am I scared? HELL. YES. But am I happy I finally have an answer and am not being ignored? You can't even imagine. This man, Dr. Gary Solomon, changed my life, and for that, I am so very grateful.
It's a sad state our world is in when someone is left to suffer for so long, whether it's from illness, loneliness, or anything, really. We humans tend to forget that others are in just as much need as we are. Why do we always brush people and things off? I know my story is similar to other's. I write this in hopes that someone might be inspired to speak up for themselves at their next doctor visit. You must be your own advocate, and you cannot settle for "I don't know what's wrong with you". If someone says that to you, you must respond with "Then please direct me to someone you can help me". There is nothing wrong with that. I won't lie and say constantly arguing with and seeing new doctors wasn't stressful, but I never considered giving up. I knew something was wrong. I'd known almost my whole life. Trust yourself, and don't let anyone shut you up until you have the answers you seek!
I would love to hear your story, whatever stage it's in. Please leave a comment and let's support each other's search for answers!
Very warmly,
Susan
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