Sometimes I hate being right...

Hello,
Well it's been a while since I updated as I've been very poorly :( and have also been battling with disability forms and going to appointments (including pain clinic) because my life is just sooo rock and roll!
Here is some more photos of that mad creature I photographed a few weeks ago, he certainly makes me feel like less of a freak lol...



And a picture of one of my new fishes, will upload some better photos of them soon, this one is a little white koi...


And finally the grim state of my knees currently, no treatments seem to be working, the pain seems to be worsening and spreading, the swelling just refuses to settle down... and frankly after 3 months of this I'm getting quite impatient for an answer!....


The pain clinic went exactly as I thought it would, and worse. My prediction from my last post was completely right, though the details made it even worse.... " I bet other Eds people reading this will know I'm blatantly in a state of dread due to an impending pain clinic appointment. There's nothing like the expectation of that brief medical, brisk interview, and antidepressant prescription writen with a florish, and that door hitting you on the arse, to make you feel defensive and grim." So.. first they sent us to totally the wrong entrance to the hospital, and whilst rushing in my wheelchair to make it to the appoitnment in time I hurt my right arm, hand and shoulder when the right wheel momentarily left the ground, making the wheel whizz out of my grasp, throwing my arm out in a wrenching, agonising movement. Finally upon arrival I could not fill out the 8 pages of forms they had for me to fill out, and needed the nurse to fill out the form and ask me, was my pain ....wrenching? agonising?... oh indeed. But the doctor could not see the logical connection between conenctive tissue disorder and the pain, all he saw was a hysteric, a victim, a broken soul. Christ, it's so tiring dealing with doctors sometimes, his replies to the things I said seemed like we were having two different conversations... this was all infront of two what I call babydocs (student doctors, these two for some insane reason want to be pain doctors) he then gave me a very brief and illogical medical, and pointed to the very old scars on my arms and said "what are those bruises?" in quite an accusing fashion.. now... A) a doctor who see's ten year old scars and thinks they're bruises is from that moment on not trusted by me... and B) Where does he get off?? I was not shown the documentation that says he get's to take the moral high ground and talk to people who are suffering like dirt.. I decided to call his bluff and said quite calmly and clearly "They're ten year old scars. I used to self harm, I dont anymore. End of story." I am not ashamed of what I went through, and I refuse to be judged by someone like that! He promptly wrote me a prescription for anti depressants, adding to the cocktail of drugs I am already on, despite me expressing concern over the amount of meds and its effects on my ability to function... and insisted that I agree to seeing the pain psychologist, I agreed, because it's worth a try, I'm not in any way saying I wont do what is asked of me, I always try my best. The way I see it if you dont try your best you cant complain if it doesnt work! There's nothing better than a legitimate angst haha. Though I wont be taking the antidepressants, I'm no fool I know when I'm being fobbed off, and Also that method has been tried, three times before, unsuccessfully.

One of the babydocs showed interest in Ehlers-Danlos syndrome, and I was answering her questions, and the pain doc cut us off to carry on asking totally abstract questions ignoring my physical problems.. this made me furious on many levels but especially as the babydoc actually showed an interest which is so rare for a medical professional concerning this illness, they usually either consider it a hyperchondriac-crutch or they just dont get it... but this babydoc really wanted to know about it, and isnt that the whole point of them doing sit-ins like that? That pain doc had an example of a patient with a really rare illness, and two students.. and he activelly avoided teaching them anything, or even allowing them to ask for themselves! All he taught them was ignorance and it really depressed me that the crap set-in-their-ways-believing-nonsense-docs are teaching the next generation of babydocs to be all apathy, disregard, disrespect and prejudgement and an uncanny ability to ignor EVERYTHING the patient says. When I was first diagnosed there were few positives to ponder on to stay sane, one of them was the logical hope that atleast now diagnosed I would be taken seriously... in retrospect that seems laughable.

I resent that the whole focus was upon my mental state, just once it would be nice if they would remember that I've been valiantly dealing with immense whole-body chronic pain for 8 years!!!!! I think that shows great mental strength and endurance, god darn it.

Right, I'm too tired and hurting to type more, or think of anything cheerful to sign off with, sorry, will try to be less grim in the next post!

Love x