Friday, January 7, 2011


ARG!!!!! I wish I didn't just have to spend the morning at the clinic, having just been there 2 days ago. My doctor there is actually really great, but it wasn't her I saw today. I had a referral sitting at the CHEO genetics department for months from Dr. C who I saw at a private clinic in Toronto in May. Dr. C no longer works at the private clinic, and there is no way for me to get a hold of him. My Mother was initially told by a genetics nurse in North Bay that I could have an appointment to see a colleague of a geneticist she saw a few months ago, who is actually a Dr. at CHEO, but is going to North Bay this February. Anyway, so I was supposed to be able to use the old referral from Dr. C, since it's the same geneticist, but then apparently that changed somehow, and they now need a new referral from my current Dr. (Dr. M, the one I said is great, she is), but the appointment they are holding for me at the genetics clinic in North Bay is this coming February 7th, a month from today. If this doesn't work out I will have to wait A YEAR to see Dr. N, or some other geneticist through CHEO. The reason I even want to see a geneticist in Canada is really so that I can eventually get the OHIP approval to see one who specializes in connective tissue disorders, and understands the potential link between these and Chiari Malformations. And there seems to be a good one in Baltimore, but none that I know of in Canada. I have a lot of signs of connective tissue problems, and it was suggested to me by a neurologist that I investigate it further. This has a huge impact on whether or not I decide to get Chiari decompression surgery, and what kind of surgery, and what surgeon, as well as how to manage my symptoms, and continual treatment of my pain, joint instability, headaches, gait problems, heart rate problems, and circulation problems such as Raynaud's phenomenon. I was just diagnosed with Raynaud's (finally) 2 days ago. I spoke to my regular Dr. (Dr. M) about all this 2 days ago, but I told her she didn't need to do anything about the referral, since to my knowledge at the time it was taken care of. She is also working to get me a referral to see a cardiologist who specializes in connective tissue disorders, but we are waiting to send the referral till my next appointment, because we want to include the right information, since this cardiologist, Dr. B, doesn't see everyone who gets referred, but picks and chooses who he thinks really needs to see him.

So, I spoke to a lovely medical secretary at my regular clinic this morning, and she said that since it's time sensitive, my best bet is to go to the walk-in clinic in the same building, since the doctors are all colleagues. When I got there the administration person tried to tell me I was wasting my time, since they didn't make referrals through walk-in, at which point I started to tear up, explained myself again, and anyway, I knew I was taking a chance but I took my seat and waited, as well as bumped up my next appointment with Dr. M so I can clear all this up with her in person, but that's not till a week and a half from now. It was all they could give me. I talked to a nice man in the waiting room. His step daughter attempted suicide recently. He seemed to really care about her. He was also trying to make me feel better, which was much appreciated. Thankfully I had my Pama Chodron When Things Fall Apart book, which is kinda hokey at times, but definitely comforting in these situations nonetheless. While I was waiting I also carefully wrote out all the contact information and other information Dr. M might need to make a referral from my messy notes, and of course had to deal with the writer's cramp, but it wasn't that bad. I'm getting used to it. I usually like to type everything out, but there was no time today. The wait wasn't that long, but I was not impressed with the person I had to deal with next.

Ok, here's where I get really mad... So, the walk-in "doctor" was actually a nurse-practitioner (these are sometimes very good, and even better than doctors), but this one was maybe 3-5 years older than me (I'm 29 now), and rather ignorant and arrogant, and was not at all afraid to pass judgement on me which was not her place at all. I was very polite and composed, and apologized several times for things being rather complicated, but also tried to communicate the importance of this referral to my life and health. Last time I saw Dr. M (2 days ago), I was feeling very sick, and had a lot of trouble just holding my head up. I was twitchy, nauseous, light-headed and weak. My heart was racing, and I was in a lot of pain. I'm sure it showed at least somewhat, and probably got me some sympathy. Today however, I was fully awake, bright-eyed, in some pain but mustering through it as I often do, and LOOKED MUCH FRIGIN' HEALTHIER THAN I ACTUALLY AM!! So, the walk-in nurse-practitioner looked at my notes and "listened" with a furrowed brow, seemed to comprehend at least enough to pass along the message, and advised me that "nothing may come of this". She seemed to think Dr. M didn't make the referral because she didn't want to, or think I needed it. I kindly corrected her. The medical secretary I first talked to on the phone seemed to "get" things a whole lot better than this lousy walk-in nurse lady. I communicated my gratitude again for her to do this for me, even though it may not follow exact protocol. As the conversation was coming to an end she said to me "I do think you're waaay involved in your healthcare". I said, "Well, this is basically my full-time job right now. I quit my job. Well, I had to." She said something like "Well, that's neither here nor there.", and I started to feel completely judged. Like I'm some whack-job who has invented all of these problems myself, and my suffering is somehow of psychological root. I thanked her again, left, held it together till I got home, but drove a little too fast. I couldn't even handle the sound of the radio, and upon getting in the door and up the stairs (I hate our stairs), fell into Dani's lap sobbing.

I am so thankful my regular doctor does not seem to think I'm nuts! During our conversation on Wednesday she commended me for actually thinking of myself for once, and quitting work that was getting way too physically demanding, and getting out of school. I finished my final essay of my BA with an 88% thank you very much! (I know I'm gloating, but that's really high for me and I gotta focus on positives.) I'm finally really putting my health first because I absolutely need to, or else I'm just going to continue to decline with no hope of improving. These problems I'm having are rather unfortunate ones to have at times, considering the lack of available knowledge about them, and the lack of adequate care and understanding. I have to be my own best advocate, because no one else will do it for me! Considering the judgmental walk-in nurse practitioner had to ask me how to spell Chiari Malformation, I don't think it is her business at all telling me how involved I ought to be in my own healthcare! I suppose to her I look like someone who is reasonably healthy and has gotten so panicked about these processes and protocols that would just happen in good time if I just wait and let the "professionals" do the work. I have tried putting my faith in doctors and it just doesn't work in my situation! That doesn't mean I don't have faith in Dr. M. I just know she has never had a patient like me before, with these complex, barely understood problems. I have to do some of this myself, and meet her half way. For instance, I have suspected I have Raynaud's phenomenon since last winter, but I didn't go in telling her I had it and to diagnose me. I brought her pictures of my feet after I was outside, told her I though I had some circulatory problems and let her say "That looks like Raynaud's!" The truth is I couldn't be 100% sure without her, and it works out better for me to let her do her job, but at the same time I have to prompt her somewhat, and for those reasons I need to be doing my own research! Why are so many medical professionals afraid of educated patients?! The ARROGANCE!!

Anyway, I capped off my morning with a nice brunch with Dani at my favorite diner, and am really trying not to feel hurt or discouraged by people who just don't know what I'm dealing with, and I'm praying that referral goes through, and it's all I can do, so f#%k the rest!

As usual, venting has helped. Thank you blog. I'm glad I'm getting used to you, even though I still miss my old journaling habit. Stupid writer's cramp.

I wish I could give a big hug to everyone else in the world who is suffering from Chiari Malformation. Sometimes I wish I just had something more common, or that seemed simpler, but I am so grateful for the support of the Chiari community. It's a tough go sometimes, but we are a strong bunch and there are a lot of us out there! There are surely many other conditions that face similar barriers, having little help through funding and research. If you don't have something everyone's heard of, you get pretty screwed sometimes. *BIG HUGS AND PATS ON THE BACK TO ALL OF YOU WHO ARE SUFFERING AND STRIVING TO SURVIVE*!!! We have to keep being out own advocates, and it sucks, but we are doing a far better job than some of these "professionals"!

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