Recovery is My Full-time Job

(or better yet) Why Neurologists Make Me Neurotic 
For 15 years I’ve searched for a doctor who can explain to me why my body has been failing me since I was a teenager. I begged for explanations, diagnoses, treatments and answers. Instead I was told repeatedly I just needed to lose some weight and exercise some more. This went on and on and on until organs began failing me.

I’ve now dealt with so many specialists who are so underwhelmingly special that I’ve come to trust no doctor to do their job for me. Indeed, thus far I’ve had to handfeed them the only successes we’ve seen in my recovery. My payment for doing their job for them and still paying them for it? I’m no better off than I was before I met them.

I also have the problem of coming to resent the hell out of them because they often turn out to be little more use to me than a prescription pad. I hate to sound this way. They worked hard on their education and I value education one hell of a lot, you have to in order to teach in today’s higher education climate to be sure, but they aren’t educated about my illnesses and they either don’t care or don’t see this as a deterrent to treating me properly. I’m sure they make someone a fine doctor, but that someone sure as shit doesn’t have a rapidly deteriorating spine and a dual diagnosis of ME/CFS and FM. Still, it doesn’t matter, I come to resent them, lose respect for them, ask too much of them and before you know it, one of us is ending the relationship and it isn’t usually with a shaking of hands.

The neurologist I’m meeting with today is promising as hell. He runs his own neuro-immune clinic. Sounds like the perfect place for a person with a neuro-immune disorder like ME/CFS to go right? Only the registration person couldn’t even find my illness listed in their system bo matter what fucking name I gave them and I even pulled out CFIDS and SEID. Ugh. So is he another one of those people who thinks ME/CFS and FM are the same thing or a denier or what? I have no idea what I’m getting myself into, but I’m going in, both barrels loaded.

I’ve prepared for this appointment so thoroughly that I’ve basically prepared a seminar on ME/CFS, if not a 6 week course. I mean seriously, I have a 51 page physician’s primer on the disease, 8 or 10 of the most important studies to date and lists of the most effective treatments as named by the top experts treating ME/CFS, because even if this guy is a denier or misinformed enough to think that the two diseases I have are one and the same, he’s the only option I have left in the greater Cincinnati area. It’s going to become my job to disabuse him of that notion. So I have to bring him to the light and get him on board or I’m out in the cold until we get the money together to move to an area with better options. I figure if he is more knowledgeable than I give him credit for, if I haven’t insulted him out of the box by bringing in my poor murdered tree of information, he’ll know I’m knowledgeableabout my illnesses and take my care very seriously. My job is my recovery.

Still, I’ve been thinking about how much more people like us have to go through for a stupid doctors appointment, especially a consultation. Filling out the paperwork alone took me 5-6 hours because of the vast history and number of medications I’m on. On top of it I have to worry about whether or not she or ge thinks I’m a crackpot, knows any actual facts about the illness and whether or not they will bother to educate themselves or will have blown me off before I make it out the door. Which means I also have to dress, speak and behave a certain way so I can have my respect and benefit from it too. Not so easy when you’re so angry about how you’ve already been treated by the medical establishment for over 15 years.

That’s why I’m going to be working on a primer of my own to share with all of you lovelies on how to get specialists to take you seriously, because like all human interaction it’s an art form and some of us are a little ahead of the game than others given all our fabulous trial and error. Why should you suffer our same mistakes? 

I will also share the research I chose so you both have access and can understand why I made the choices I have. Of course, this doesn’t little for the stress and anxiety of the appointment itself unless you’re one of those dudes that could sleep like a baby during exams week. I’m a mess and have barely slept the last two days. It doesn’t ultimately matter how well prepared I was in that respect or how many months ahead I started (3), I’m still running each scenario through my head like Urban Meyer on game day.

Have no doubt, I will let you know how it goes. 

Love, 

Your faithfully exhausted pigeon 🙂

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