I truly believed I approached yesterday’s “Second Opinion” Rheumatology appointment with “down to earth,” realistic expectations.
I boasted to my new-found friends, in the PMRGCAuk HealthUnlocked Forum that, “I wasn’t looking for a miracle cure.”
I was quite emphatic that I knew there was no chance of my receiving a new or different diagnosis; or of being told anything, that I had not already heard.
My exact words were, “I’m hoping only for an informed, educated, experienced second opinion.” “I’m looking for a tried and true steroid taper down schedule, that’s based on factual historical data, with proven positive outcomes.” “I’m looking for someone who will LISTEN TO ME!”
What a total crock of BULLSHIT!
Not only was I apparently lying to all my new friends… I was totally bamboozling myself!
However, I digress… or am I jumping ahead?
The good doctor from Chertsey came very highly recommended. He has a wealth of knowledge and experience in the field of Rheumatology, with special interests in Polymyalgia Rheumatica and Giant Cell Arteritis. I wanted a “second opinion” because… well, because this is my f**king life and it’s important for me to be educated and well-informed about my health.
The appointment lasted 45 minutes. He came across as confident, yet interested in my story. He listened intently and wrote down a lot of what I said. He gave me genuine, empathetic glances and verbal cues, at well-timed out intervals. He definitely had experience in this field and he presented his opinions in a clear, well thought out fashion.
It all seemed to be going so well!
…until the appointment was over and we began our drive down the M25, for what would be the longest hour and half journey home, ever.
It was in those first, few minutes of silent introspection that I realised I was not at all happy or satisfied with the experience. There were no feelings of peace or achievement. I was disappointed, let down and very much discouraged.
It was then I started to appreciate that all this had NOTHING to do with him and everything to ME! I had set myself (and him) up for this colossal failure; set my expectations way too high and albeit subconsciously, I had “pulled the wool” over my own eyes.”
Duped myself; tricked, deluded, mislead, fooled and lied to myself.
I never wanted a freakin well-informed, educated, experienced, second opinion. I couldn’t give a f**K about a tried and true steroid taper down schedule, based on factual historical data, with proven positive outcomes! And, crikey the poor man had listened to me drone on for 45 minutes and not once did he allow his eyes to roll back into his head!
The problem was… I had been expecting a miracle!
I had been hoping for a new (less sucky) diagnosis. I wanted different options… a more palatable and less complicated disease. I had secretly hoped that I had something that would be a little less of a bother and a bit more chic. I don’t know, maybe something like a gluten Intolerance, or a multiple chemical sensitivity, how about Lyme disease?
I experienced an “aha moment.” That moment you discover that you’ve been a total knob head. The point in time where you see you were able to (quite convincingly) look yourself straight in the eye and lie to yourself about your very own beliefs and ulterior motives.
I wanted to see this doctor, because I was expecting a different result!
This was a huge (if not very disappointing) revelation!
One of the things I have always prided myself on is my ability to honestly assess and analyse ME! To objectively look at myself and identify the genuine, straight forwarded reasons for my doing (or not doing), believing (or not believing), thinking (or not thinking) something regardless of how much of an A-hole it made me look like. And if I do say so myself, I am usually able to do this so well, I have never had to question (or even considered) that I might be able to outwit myself!
Well, the good doctor from Chertsey, wasn’t having it…
He agreed with everything the original Rheumatologist had said and done; he even gave her credit for trying the more “aggressive” taper down schedule. He would change nothing, except (and this only to give me peace of mind) would agree to my reducing by 5 mg every 14 days, rather than every 10 days… but that was entirely my choice.
My PMR/GCA diagnosis was correct. I’m not different or special or unique in any way. (Well, other than he did say I was a bit of an anomaly in that I have an unusually high tolerance to steroids! Woo Hoo lucky me! ) There is no fast path, no easy way out, no substitute for steroids, no reduced timelines, no magic bullet. It is what it is.
There is no way around it, there is only through.
I guess the bottom line for me is… “Know thyself.”
I thought my intentions were pure. I believed I was further along the path of self enlightenment path, than I obviously am. I thought, for the most part, I was honest, authentic and “real,” with myself. Hmmmm?
Next time I won’t be so quick to believe me! I will question and re-question. Assess and reassess. Analyse and re-analyse. Doubt and doubt again….
“The lies we tell other people are nothing to the lies we tell ourselves.” ~ Derek Landy, Death Bringer
rantings of a madwoman 
I do so admire your ability to express yourself with such clarity. You may be saying you were lying to yourself, but I think your ability to accept the situation when the wool was pulled away from your eyes is admirable. There will be many on the forums who will read your comments and see themselves, and maybe also see a path to enlightenment which you have shown them. Don’t beat yourself up, you’ve done amazingly well.
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Thank you… I appreciate your perspective.
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Melissa, I don’t know where I’ve been but off of a Facebook…I had no idea what was going on for you! Perhaps I got caught in the spell of all the cute photos of this guy Max in your life! And now to find out about this reality of basic (non)health going on, too. It’s the dark side alright. The road sounds like it’s been a rough one without immediate relief in sight. Ah, the seduction of lies. I think that it may suck even more when you know the drill with others and now it’s your drill…
You’ll meet it, however you will. One day at a time, girl. Take good care on all levels. I’m around for whatever including holding space for primal screams.
Love
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Ahhhhhh Laurel, lovely to hear from you! No worries about not knowing! It’s a dull and boring story! Yes… the Universe is trying to teach me (first hand) about the 5/7 (or is it 10, 50, 100!) stages of loss and grief! I do know the drill, but it is so much harder when you’re the main character IN THE DRILL! WTF? I find myself having to deal with a debilitating illness, ageing, loss of control, vanity/ego, sleep deprivation, a total lack of energy and the constant feeling like I’m on the edge of a panic/anxiety attack! Sweet, huh? Anyway… yes it will be a long, arduous road as the diseases last between 2-5 years before they burn themselves out. So, it looks like I’ll have a LOT of time for some serious introspection and a good, hardy examination of ME! I hope you are entertained by my journey and find it maybe helpful. Big love.
PS – THANK YOU for holding space and the much needed PRIMAL SCREAMS!
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i am writing a duplicate reply here — i am trying to find you on facebook. Would love to read your posts. Thank you for this blog. I cant find you on fb. Im looking in the GCA group.
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I see you found me on FB! : ) Thanks for reading my blog!
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i just read that you wrote the diseases last 2 or 3 years. Assuming you are referring to GCA? I’ve heard not curable. ?? I am 77. No matter really if not curable..im old. But I think about so many people who are in their 30s,40s, have children and my heart breaks. If 2 or 3 years and/or remission are attainable goals it is at least hope.
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Yes… doctor’s used to say GCA & PMR lasted 3-4 years, but I think now they say 3-5, years. No, not curable, but manageable. There is hope to live a fairly normal life.. Yes I am 63 and feel bad for those in 40-50s who are getting it… Be well! Thanks again for your support! Melissa
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