Its a game-changing kind of day!

When I woke up this morning, I knew I had an appointment to see a new doctor – a neurologist.  I haven’t seen a neurologist since I was probably ten years old.  Since I got the diagnosis of Reflex Sympathetic Dystrophy, I’ve spent a lot of time in the waiting room at pain management clinics.  There’s no cure for RSD, so pain management was the obvious route, and because these doctors gave me at least a bit of pain relief, we stuck with them and never saw another specialist.

Despite my doubts over the years of my diagnosis, there was never a doctor that questioned it.  I would meet a doctor and explain to them that my symptoms didn’t really match those of someone with RSD, and it was like the doctors had on sunglasses and could only see my condition with that color lens.  No matter what symptoms I was showing, I had RSD.  That’s the trouble with diagnoses: yes, they simplify processes and give a name to the face of someone’s demons, but once you get diagnosed, its difficult to move outside of that realm.

So back to my doctor’s appointment…  I was in that kind of mood this morning where everything anybody did or said bothered me.  I didn’t want to go to this doctor, and I didn’t want to waste my time.  For those of you who have an illness that doesn’t always fit inside the box, you’ll probably understand my frustration.  New doctors suck.  I hate seeing new doctors, and if my parents hadn’t been in town to make me go to this appointment, I probably would have cancelled it.  So I didn’t have the best mind-set going into the appointment, and I expected absolutely nothing constructive to come out of it.  I expected to be disappointed.

I was supposed to get a nerve entrapment test done and to do so I had to meet with the neurologist first.  The nurse led my parents and me into Dr. Martin’s office after taking my vitals, and at once I liked him.  My mom described him later on as that absent minded professor type.  She hit it on the head.  I wouldn’t be shocked if he was slightly cuckoo, but judging by the huge number of awards and diplomas on his office wall, he is a very intelligent man.  I explained everything from the beginning: how the pain started, how I got diagnosed, how it progressed, what treatments I’d had, what my pain felt like now, and the various other things that happen in my body that seemed unrelated but abnormal (like the fact that my feet don’t sweat).

In a split second he dismissed my diagnosis, and I realized I had found my real-life Dr. House.  He was slightly crazy and disturbingly bright, but he wants to figure out what the hell is wrong with me.  He wants a diagnosis as much as I do, and for that I am so thankful.  Not to say that my previous doctors didn’t care whether or not I was in pain, but pain management doctors approach things differently.  They’re not diagnostic people: they treat and manage pain.  They don’t cure it.  It has its place in medicine, of course, and they’ve helped me a great deal to function in everyday life, but I’ve never had a doctor put two and two together and actually made four.  He didn’t take the diagnosis as a given, which meant that he examined every dusty corner of my health to find out what is really going on inside of my body.  He came to the conclusion that I have an autoimmune disease (say whaaaaaat?).  He doesn’t know which disorder, but it isn’t RSD for sure.  He took note of all of these other things that are abnormal about me and realized they’re all related.  Symptoms that I didn’t even know I had now matter a great deal, apparently (for example, my hands and feet look like wax, which is a symptom of certain autoimmune deficiencies).  He’s going to run some blood work, and if he can’t do the tests and treatments he wants conducted here in Tallahassee, he will send me to the teaching hospital at Vanderbilt (where Dr. Martin has an award named after him, in case you wanted to know) because they are the nation’s leading research center on autoimmune disorders.

I’ve never been so amazed by a doctor in my life!  Just the fact that he wants to move in a different direction is heartening to me.  For once, I left a doctor’s office feeling encouraged and maybe even hopeful.  Plus, I realized something very important today: some opportunities that don’t seem like opportunities can be the game-changer you were hoping for.  The game has been changed J We’re moving in a new direction, and I don’t even think I would have gone to the appointment if it had been up to me.  I would have missed out on this amazing opportunity.  I would have continued to just manage the pain, without ever realizing that maybe the causes matter just as much as the symptoms.  I don’t know where I will end up, and now I have no diagnosis, but it seems like we’re on the right road now.

So I’m asking you to not give up on the resources people provide to you.  As smart as we think we are, we don’t know everything (surprise surprise!).  In fact, we know almost nothing in proportion to the amount of information that’s out there.  People and situations are often different than what they appear to be, and we can’t assume that anyone or anything will turn out as planned.  We apply knowledge that we already have to situations and people, but if that knowledge is flawed, we will miss out on the majority of the picture.  Throw out your preconceived notions and don’t give up on finding an answer for whatever problem you are facing, because tomorrow could be a game-changing day for you!

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12 thoughts on “Its a game-changing kind of day!

  1. hi, my name is joanne,iam new here to the site, iam here because iam up for a lung tx & due to smoking, copd and emphysema, iam trying to send out awareness,b/c not to many ppl understand what that even is, i stumbled upon ur blog by accident, trying to find my way around here lol, & i found it to be very interesting,i just wanted to say,you sound like a very strong person,dont ever give up, i no just where your coming from with drs and all,lol sounds to me like your center is the right place for you since its the leading one in tallahasse, & your drs seems like hes on the money there with you, glad you feel better with him,that means alot.well, hang in there, i wish you the best, but stay positive. your gona be fine.:) have a good night..

    • Hi Joanne! I know what you mean about stumbling onto my blog… I don’t understand how I get to half of the blogs that I see! Anyway, though, I’m glad to see that you stumbled onto it, and I’m sorry to hear about your illness. I’m a follower of your blog now so that I can learn more about it myself 🙂 My boyfriend’s father suffers from COPD and emphysema as well, and it is always so frustrating to him how little people know about it. I hope you find the help you need at the place you’re going to, and I hope you stay positive as well. You should be proud of yourself for putting yourself out there in order to raise awareness. Its rough to open up to strangers, even if its over the internet… I’m going to go read more of your blog right now 🙂 Good luck with your journey!

  2. Oh Katie! This is wonderful news! I remember when we knew we’d found the right doctor for John. It’s a game changer indeed. Just to be understood makes such a difference. Here’s to hoping there’s an easy cure for whatever it is you have.

    • I’m really excited to see where it takes us! We probably won’t know anything for another 4 weeks or so, and its crazy to think it took 12 years to get here, but we got here none the less 🙂

  3. Wow Katie. That is very good news. Now I hope he will be quick and thorough with his follow through on tests and such. Now that this ball has started rolling, it needs to keep moving!! Your very own Dr House!! How cool is that?!?

  4. This is such good news! I am thrilled beyond words. And the lessons you are taking from all this are very inspirational.

  5. hi katie, i receieved your answer in my blog gege & had to figure out how to get back to you, boy the things iam learning how to do with my computer lol,anyway, i hope you had a beautiful day and that you are feeling at ur very best. your a very strong person. good thing will happen :)) As for ur b/f father, well yea, the thing is there is soo much info with it now then 10 yrs ago,& people still ignore the facts, i was a very big smoker, smoked since i was 12, so i really didnt no any better back then everyone smoked, if u didnt, there was something wrong with you,,lmao how sad is that one,i hope he quit smoking. and if he needs to know anything feel free to ask, if i no i will direct him in the right direction, if i dont no ill send it on to someone who does.. anyway i just wanted to say hello. :))

    • He quit smoking when he was diagnosed with COPD a few years ago. His wife quit as well, so happy that they were able to quit! They were the exact same way, smoked there entire adult lives and got hooked before any information had come out about the dangers. He keeps to himself quite a bit, and so we don’t really know how he is doing a lot of the time since he doesn’t live near us. When we talk to him on the phone, he just sounds so tired and winded. Is that normal with COPD/emphysema? He is very shy, and so we’re just trying to figure out what we can do to help. I’ve read all of your blogs, and I’m really learning a lot so thank you for posting them 🙂 I hope you’re having a great day!

  6. hi katie,how are you feeling.. i hope good, enjoying your weekend!! iam so glad my blogs are helping you learn something, thats great 🙂 As for your b/f s dad, its really good he quit smoking & there was team work there,that was even better 🙂 As for being tired & winded, ohh yea, the thing with copd that really people dont understand is how draining it is,not to mention very very complicated, I call it the complicated disease :)) b/c you can be good one sec. then all of a sudden, you cant breath, headach,no energy at all, coughing,your immune system is low. it also comes in stages.like 1,2,3, 4 your at the end of it,but if you catch it in time,early ,you quit smoking,excersies,eat right, then you can prolong the progression by many many yrs.so hopefully he nipped it in the butt early on.iam stage 4, sooo my lungs are not workable at times but i make the best of it, 0xygene helps alot, 24/7 . showers are really bad ,omg well, i can go on & on, lol. if you wana know anything, feel free to ask me, if its not there in my bloggs ill make a blogg for it, so dont be shy, well iam going to bed, as i woke today with a cold.:(( but tomm will be better lol gota be optimistic lol. you have sweet dreams katie..

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