One of the most exciting experiences of being chronically ill and having to see the doctor all the time is making appointments!  Are you getting the sarcastic tone?  I dream of getting to sit on the phone on hold frequently while the doctors’ staff or their nurses tell me he/she will be unavailable for weeks..maybe months!   It never made sense to me when first dealing with my diseases why I could never get an appointment in the actual week or days I needed the appointments to be!  Why could I not see the doctor when I was not feeling well or when I was presenting with the symptoms that could help the doctor diagnose me.  Instead, I would have to wait, which would result in an un eventful doctors appointment that entailed me doing my best to explain what I was going through while the doctor would look at me puzzled and state “well, I’m not sure what you were experiencing but since the symptom is no longer occurring let’s just wait and see if it comes back, then call me.”.  “FREAKIN GREAT!” I would think to myself.  In many cases, said symptom would return, and I would immediately call the doctor to be told “He’s not available until next week at the earliest” or “he’s away at a conference” or “She’s on vacation”.  Sigh… “Why can’t I ever get in when I’m actually sick?!”  So frustrating right?

When you have a chronic illness you have to learn how to work the system if you’re going to get anywhere with treating your disease properly. First things first, your doctors need to know you mean business and you will take nothing less than a VIP status to be this doctors patient. The nice thing is that if you have a rare disease(s) like myself certain doctors are willing to give you this VIP treatment because they are thrilled with the idea of working with a rare patient!  Others, however, also know that rare can equal more time, attention, and frequent visits… and well, let’s face it… many doctors are just not down with that.  For the most part you should be able to decipher between the two after your first visit.  Don’t waste your time on them if they aren’t willing to spend their time on you.  If you’re like me however I think the best way to get this treatment is to just be straight forward with your doctor.  Tell them everything.  Give them your full history.  Let them know what it takes to be your doctor and what you expect of them.  Let them know you are looking for someone that can be available in case of emergency and not pawn you off on their colleagues if something happens (obviously if they are on vacation or out of town that would be an exception).  If you are straight forward with them, most of the time they will be with you.  The only way to truly know, however, will be through experience.  This can be frustrating as well for all of us because we already have to learn how do deal with all aspects of the medical system the hard way as it is.  Luckily most of us have our regular specialists that get to know us pretty well after a certain amount of time.

This is all fine and good but to doctors don’t do the scheduling.  Sure, they are doctors and the make the big medical decisions but they are not really in charge of patient treatment, scheduling, or anything that happens outside of that 5 minute visit you get with them.  This is where the nurses and staff come in to play.  Keep in mind for ALL of your specialist that the most important people to build a relationship with are the nurses.  The nurses are the true leaders in the doctors office.  They decide who is seen, when, they direct the doctors every move, and if special treatment is needed they will be the ones to give it.  In all scenarios you want the nurses on your side.  The second you walk in to that office learn their names, do they have families, how long have they been a nurse?  Talk to them about you and your story.  Give them something to remember you by and most importantly always thank your nurse.  Show them how much you appreciate them.  A little compliment goes a long way and they will return the favor in the long run for sure.  My favorite nurses name in Connie.  She works for my kidney specialist.  This woman means serious business and is a force to be reckoned with.  When I first met her I was very intimidated and quickly learned she had to be this way in the environment she worked in.  She is the backbone of that Urology practice!  I have been going there for almost 8 years now and after building a relationship with Connie and all the times she has treated me in the hospital and in the office all I need to do is ask for her when I call and she takes care of everything.  Sometimes I don’t even have to see the doctor!  If I have another kidney stone I call her an let her know and she gets the orders for me to have a scan.  I just go to the office and pick them up at the window and head to radiology for the scan.  She is the best and I garauntee if I did not pay her thanks, courtesy and build the friendship I have with her, I would have wasted time and money in that office. Not to mention, the number of times I would have had to make ER trips would have been tremendous!  So again, I cannot stress how important it is to build these relationships. Your life will be a million times easier if you do this and getting in to see your doctor, when you actually need to see him, will happen.

Let’s say you’re dealing with a doctors office that is not that friendly, or maybe you just don’t have a chance to really interact with the staff when you’re there.  Maybe you aren’t at this specialists office frequently enough or maybe you just feel like crap and really don’t want to put on a face for anyone that day.  All likely scenarios right?  We all have those days where we just can’t.  I mean, if we need to be at the doctor, chances are it’s not a good day for us.  What do you do then, if you need to get in to see the doctor right away?  I’m going to let you in on a little not-so-well-known secret.  First you have to promise you wont go telling all your friends about it ok? ;o)  Every single doctor / doctors office has slots in their daily schedule that remain open for emergency visits.  The visits that most of us spoonies need to get in for.  If you call and speak to the front desk, first thing in the morning, and you stress the importance of getting in to see the doctor that day or the next day, they can and will fit you in.  This is all assuming you call first thing in the morning when they open.  Now when I do this I always stress needing to get in that day but there’s something else I need to stress.  These appointments are reserved for critical cases.  For the patients that are having an immediate issue that needs a doctors attention but may or may not warrant an emergency room or even a minor emergency room visit.  There’s also the scenario for the spoonies or the chronically ill where we need to get in immediately to see a specific specialist because an ER does not have the proper knowledge to treat us.  What is important to know here is that it IS possible to get in right away.  What’s also important is to not take advantage of the system and this knowledge.  One person can ruin it for the rest or us so please keep that noted in the back of your head.  What this may also mean is that this “emergency appointment” may result in you seeing another doctor in the practice or a physicians assistant.  Take it.  The other doctor or PA can consult with your doctor if they need more information.  All you need to do is get in.

These aren’t the only appointments we have to make.  Unfortunately, as much as I hate having to deal with doctors offices giving me the run around, making appointments for tests and scans is an even bigger pain in the ass.  Now a days getting in for scans such as CT’s and MRI’s is even more frustrating than it used to be.  A lot of the facilities and equipment are booked up weeks and months in advance and unless its an emergency case it’s unlikely you will get in, in a timely manner.  Even when the doctor writes “Stat”  on the order it rarely means anything to the radiologist and his team.  I had a radiology technician tell me once after I mentioned that my doctor wanted this scan as soon as possible and wrote stat on the order that “stat may mean something to him(referring to my doctor), but it means nothing to me. I will get you in when I get you in.  I have a long list of “stat” orders”.  “Well… ok then!  Point taken!” I thought to myself.  The people running the machines, taking your blood, and sending the reports back to your doctor are insanely busy.  They are busy because every patient needs some sort of test and with the amount of time some of these tests can take they have serious back log issues.  I can’t say much about their processes, maybe there are ways they can cut back on the amount of time and maybe there aren’t, but the last thing on their list of priorities is getting you on their schedule when YOU want to be there.  Unless the doctor calls them personally and tells them to squeeze you in (which may result in someone else being moved) then you have no say here.  In this case I would work with your nurse.  The doctors will not take time to get you in unless they think there is an emergency, but they will tell the nurse if it’s important enough to at least have the test done quickly.  Often times if you don’t follow up  with the nurse or the staff you will be scheduled weeks/months out.  Typically I will meet with the nurse after speaking with the doctors and after he has handed the orders to her.  Rather than having the radiology department call me to schedule the appointment I ask the nurse if she would mind calling to get me in sooner as the doctor would like it to happen sooner rather than later.  Almost every time I do this I get in that week.  Doctors and nurses have much more pull when it comes to getting these appointment.  Work with them and you will cut your wait time.  What this also means is that you have minimal time for your insurance to approve the test. Get the insurance the information and ensure the doctors office sends it right away.  I say this because the process has changed in the last few years.  It used to be when you had tests scheduled the insurance would approve, you would go do your scan and get a bill in mail.  This is no longer the case.  Now you have to have your insurance approval so they know what you owe before hand and most hospitals will call you in advance to let you know how much you owe before you complete the scan and they will ask you to pay the full amount as soon as you arrive to have your test done.  The same goes for surgery as well.  I was caught off guard the first time this happened when I showed up for a surgery and they asked me to pay $3000.  I don’t know who came up with this pay first idea, but I’m not sure it was well thought out.  I didn’t know stressing your patients out even more before they are about to go under the knife was a good idea…  I immediately challenged them and said I have never had to pay up front before and what are you going to do if I don’t?  Not give me the surgery I need?  The conversation ended in me paying a much smaller amount I could afford and setting up a payment plan from there on.  Since then, I have noticed that the general practice now is to call before hand and make sure the patient is aware that payment will be requested upon arrival and for what amount.  Even so, I still think it’s total crap.  Personally I would like to ensure everything went well first before I pay for a surgical procedure.. but I digress.  Keep in mind this is typically the process and be prepared for it.  Also keep in mind this is the practice in the United States, where noted in my last post, we have the opportunity of paying out the ass for our medical care and making our sick people go bankrupt…

Back on track here…Like I said, being chronically ill you have to know the system, especially, when it comes to appointments.  It’s all about strategy and a little about being sick, but mostly strategically using your cards to ensure you get the best treatment, when you need it.  You have to remember the doctor, nurses and staff see sick people every day.  Seeing sick people becomes the norm, therefore, you as a patient are no better or worse off than any other patient they have. Unless you are on your death bed in the hospital, you’re just a regular customer.  You need to build up your case, create those relationships, and know how the system works so you can use it to your advantage.  Making appointments can be a big pain, but it doesn’t have to be.  If you learn how your specialists and other doctors run their practice, use the knowledge wisely and you will never have to wait again.

~Just a Regular Sick Girl