I don't enjoy going to doctors. I don't like listing "professional patient" on my paperwork as my occupation. I don't like giving up half my blood for another round of testing. I don't like leaving my doctors with referrals to see even more doctors. And I certainly don't like leaving appointments with more questions than answers.
But lately I realized that while everything I listed above is still not on my favorite things list, there is something that I do like about these past few months of seeing doctors. Ready for it?
This was on my recent blood work orders from my doctor. Did you catch it?
If you are another professional patient (i.e. someone else with a rare disease/chronic illness) then maybe you see where I'm going with this. These are the diagnosis codes my doctor put on the blood work orders.
DIAGNOSIS CODES. Meaning there is an actual diagnosis. Not idiopathic, intractable (unknown cause with no effective treatment) nausea. Not unexplained allergy disorder (yep, had that one a few times). Not episodic syncope (passing out once in a while). ACTUAL DIAGNOSES.
Don't get me wrong, I'm not celebrating that the list of diagnoses here (and on other orders) is now longer than the number of schools I have attended (professional student status here). I AM celebrating the fact that what is going on in my body is no longer this unknown entity that we are fighting without any real direction of what to do.
Even more, though, I am celebrating the fact that I now have a team of doctors who are not only agreeing with these unusual diagnoses, but doing what they can to help me manage and treat them. I am so thankful that it has now been a couple of years that I have had a team of doctors who not only believe that something is wrong but are supporting me and behind me when I need them. I am so thankful for these diagnoses because it means that I'm no longer fighting to be heard or fighting for the doctors to take a step back and consider that rare doesn't mean never.
It's been a couple of years since I've seen a really bad doctor (i.e. GI doctor who told me I was depressed and starving myself), but that doesn't mean that I've forgotten what it feels like to not only be fight my body every day but to enter every appointment ready to fight for what I need just to get by. I am SO SO SO thankful to have entered a new season of rare disease life where I have doctors in place I can call with any concerns and get answers back along with suggestions to help me mange better. This is a huge blessing that I do not take lightly.
In the past week, I've seen 2 new doctors. I mentioned that I was seeing a new neurologist last week, and I saw a functional medicine doctor earlier this week. Both appointments went well, and I left feeling like I have another doctor on my team willing to do what they can to get me whatever improvement is possible.
My neurology appointment was with a new neurologist that I had been referred to by my previous neuro. I've been having weird ongoing neurological symptoms for a good bit of time now, and my regular neurologist felt that she really wasn't sure where to go next other than some invasive testing. We agreed that probably wasn't the best option for my body unless absolutely necessary, so she wanted me to see the neurologist who was the head of their autonomic department.
That appointment was last week. It went well. The doctor was very thorough with her questions and asked things I never would have even thought to bring up. She listened to what was going on and my concerns about what I felt were the most problematic issues. I tried to do my best to communicate the rapid progression of my symptoms last summer, the improvement at the beginning of this year, and where I am now along with the deficits I am still noticing. She asked about things I had not mentioned and was knowledgeable about some of the co-diagnoses that go along with the POTS I have already been diagnosed with. I left the appointment feeling like we had a good plan in place (EMG in 2 two weeks, repeat brain MRI some time in there, TONS of blood work), and that we will be able to make decisions of what to do next when I see her again.
When day to day life is filled with often unexplained symptoms and just trying to function to live as normally as possible, it is such a blessing to leave appointments feeling like we are making progress instead of getting nowhere or even frustrated that another doctor wouldn't listen.
Early this week I saw a functional medicine doctor. This was kind of a crap shoot as we really didn't know what to expect form this appointment...especially when the patient packet I had to fill out was 2/3 about diet...for someone on a feeding tube, that doesn't necessarily bode well =P BUT, I kept an open mind and figured that even if it was a complete joke I'd get a good blog post out of it! See, always thinking of you guys! #doitfortheblog
Sorry to say (oh the irony) that the appointment actually went well, so you'll just have to settle for a regular update rather than a play-by-play of how the craziness went down. The reason I went to this doctor was to see if we could get a more holistic view of everything that is going on and if there was any other approaches to treatment that could be tried. The doctor was a regular doctor (i.e. went to med school, did residencies) but focused on finding root causes for chronic conditions that seem to appear out of nowhere. He described himself as a forensic doctor in a way. He sees what is left (patient with chronic illness or just ongoing symptoms) and tries to identify what caused the body to go haywire. He didn't discount any of my current diagnoses (see photo above, that was from his blood work orders), but said that there was likely a trigger that set everything in motion. The idea behind functional medicine being that if we can figure out that root cause, it might give us another angle to treat/manage/address to potentially see more improvement.
So we'll see! He ran a bunch of blood work (side note, didn't break my current record that was set last week of 22 vials in one draw) and I have some other testing to maybe do. And we'll see. Most common words ever spoken by any patient with a chronic illness...we'll see...translation: HURRY UP AND WAIT.
So that's what's been up in Bokatopia lately! Doctors, blood work, testing, insurance problems (when is there not??)...being a professional patient is exhausting...like being on a never ending carousel, the same things over and over (testing, blood work, appointments)...I should be getting a promotion at some point, right?? =P In the next couple of weeks I'll be doing an EMG and brain MRI with my neurologist and potentially some other testing with the functional medicine doctor as well as my regularly scheduled Xolair.
I'm not sure I'll ever actually LIKE going to doctors. But at least where I'm at now, I can remember where I used to be and be so thankful to at least have that fight off my hands. My mast cells might not like to play fair, but it's nice to know I now have doctors willing to fight alongside me.