But I Don’t Want To Be A Zebra!

I think I’ve mentioned the ‘horse and zebra’ reference in a previous post but, I can’t remember. Anyway, the whole ‘horse and zebra thing’ refers to [medical] patients. A ‘horse’ is someone who has symptoms that are caused by [more] common disorders and aren’t anything out of the ordinary. A ‘zebra’ is someone whose symptoms are atypical and are harder to diagnose. My primary care doctor has been referring to me as her rainbow unicorn for a few years now because nothing is ever typical or ‘normal’ with me. Hey, at least I get to be a unicorn, right?

I managed to pack in four (supposed to have been five) doctors’ appointments this week alone. To say that I’m exhausted is an understatement. This week has been mentally and emotionally exhausting. I’m tired of going to doctor. I’m tired of getting my blood drawn. I’m tired of MRIs and CT scans an X-rays. I’m so over this chronic illness bullshit.

Let’s get right to the updates. Here’s the breakdown…

Orthopedic Surgeon: Let me start by saying I truly adore my doctor; he’s been great to me. Having said that, my EMG result came back normal (as I expected). While there are some issues that could potentially be fixed surgically, the risk of causing more damage is enough to make my doctor not act on it. I have to say that I was disappointed. I was really hoping that my shoulder could be ‘fixed’ surgically, but, because it’s me, it didn’t pan out that way. INSTEAD, I have been diagnosed with Complex Regional Pain Syndrome. If you’re asking yourself what the hell that is, I did the same thing when the doc said it to me. Complex Regional Pain Syndrome is a chronic pain condition that most often affects one limb usually after an injury and is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems (the brain and spinal cord) and involves nerve signaling from the brain and spinal cord to the rest of the body. [Thank you, National Institute of Neurological Disorders and Stroke] Freakin awesome. I felt bad for my doctor because he tells me that he’s done all he can do and has to refer me to a pain specialist (I already have one, but they deal with my MCTD and back pain). He must have said sorry ten times and was genuinely upset that he was no longer able to treat me for this issue. I told him that he shouldn’t be sorry because he did everything he could, and things just went in a different direction than initially predicted. Currently awaiting a phone call to set up my initial appointment with this new doctor.

Hepatologist/Gastrologist: This appointment took a hard left and took me off guard. I went in to have a follow up regarding my liver function since I restarted my immune therapy medication. I’m in the little triage office and the nurse is taking my vitals and going over my info (meds, allergies, surgeries/procedures, and family history) as they do every visit. For some reason it either wasn’t on the new patient questionnaire or it didn’t get put into the system that I have a family history of GI issues and cancer. Quite a few people on my dads’ side of the family suffer from GI issues and my dad had colon cancer. I thought I was updating my info but nope I was digging myself a nice, uncomfortable grave. I go into the room and wait for my doctor to come in. He comes in, asks me how I’m feeling being back on my Methotrexate, asks me to send him a copy of my routine bloodwork so he can continue to monitor my liver. Ok, no problem. Time to go? Oh nooooo. Since finding out that my dad had colon cancer, my doctor decides that I’m in need of a colonoscopy. I’m sorry what? I know I just had a birthday, but, I only turned 31…? Well, thanks to genetics and my immune compromised body, I am a prime candidate for something to go wrong. And, with me, if it can go wrong, it usually does. Ugh. So, now I have a colonoscopy scheduled for next Wednesday. I am NOT looking forward to this at all.

Back Surgeon: It’s rare, and I mean, RARE, that someone can be redeemed in my eyes; somehow, this guy got lucky. First off, it took over half an hour for his PA to come in and review my paperwork with me and ask me why I as referred there. I go over my schpeel about my slipped disks, the symptoms I have, and I mention that I had previously been refused surgery because my back wasn’t “bad enough”. She says she’s going to pull up my most recent MRI and she’ll be back in. NOPE. I wait another HOUR until my actual doctor finally graces me with his presence. Let me tell you…I was not impressed. He had a horrible bedside manner, acted as if he was annoyed to working, and didn’t bother to read the notes from his nurse because HE TOLD ME what symptom bothers me the most. HOLD UP. You have no idea which symptom bothers me the most because I haven’t told you, so slow your roll chief. We go over the MRI results (that’ve I’ve already seen and discussed with the doctor that referred me to this schmuck), MY biggest issue, and then, as predicted, he tells me that he also is unwilling to do surgery. I was livid and so irritated that I just let it show. At this point, I’m ready to walk out and scream. Then, redemption happens. He tells me that although he can’t/won’t do fusion surgery, there is a surgery that could alleviate my pain…I’m listening. It’s basically an internal Tens Machine that’s surgically placed on your spinal column. If you don’t know what a Tens Machine is, it’s an external device that uses electrical currents to ease back pain. Same concept, except, this one is internal and stronger. FINALLY, a solution! The next step is to go back to the doctor who referred me, so they can try out an external version of the machine. If that works [and I’m hoping it does], then I come back, and he places the permanent device. Yayyy progress.

PCP: Normal three-month blood work to check my MCTD and renal functions. Pick up a few prescriptions. Easy and boring.

Rheumatologist: I WAS supposed to have my usual follow up with my Rheumatologist but for whatever reason, my lab results didn’t get to their office in time for my appointment, so it was canceled. I still haven’t received notification that they’ve come back so who knows when that appointment will take place. Hell, I don’t even know why I need to see him right now. Ok, I half take that back. Depending on what my results say, I may need to see him. If my CRP comes back abnormal, the only thing he’s going to do is increase my Methotrexate dosage [to the highest dosage possible]. I kind of think I’m either at or am approaching the point in which there isn’t much he or any other Rheumatologist can do. Who knows. Time and lab results will tell.

Oh! AND I STILL haven’t gotten an appointment with a Neurologist. Apparently, there are doctors who don’t see patients whose symptoms and/or disorders are the result of a motor vehicle accident. The last two places I was referred to wouldn’t treat me so now, the referral coordinate [from my PCPs’ office] has to find a practice that takes my insurance, will treat me, and doesn’t have an insane waiting period. Absolute fuckery.

I’ll do my very best to post an update next week and let you all know how my procedure went.

 

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