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Posts Tagged ‘Chronic Illness’

I had to write about this subject just to get it off my chest. This is an example of how the medical community reacts to and treats people with AS. To start off with, I have a medical condition called interstitial cystitis. It’s a very painful bladder disease and when it flares up badly, it can mean pain and it can mean getting up to go to the bathroom every 30-40 minutes to pee around the clock. When the flare lasts a few days, it mean NO SLEEP FOR ME. And what do you think happens to people when they get no sleep? Correct! You will become emotionally unstable.
So, in this condition, on 9/27, I arrived for my appointment with my IC specialist, a nurse practitioner. Of course, upon my arrival, I’m told that I owe $25 for a no show appointment. Which only upsets me more, because I had called the office the night that I missed to see if I could reschedule the appointment, and was greeted by a recorded message saying that the office was closed for the day. In my experience, this can mean only one thing, my Aspie brain screwed up the day. Perhaps, with the auditory processing disorder, I didn’t hear the date correctly when they called to confirm it.
Anyway, so that was that. No excuses for me, no understanding of my explanation, no matter that I had never missed an appointment in 3 years! Too bad – you owe us I was told.
By the time I got into the appointment I was in a meltdown state. My husband was with me, concerned that I hadn’t slept and was emotionally in a dark place. I say dark place, because, when you are in chronic pain, and chronically sleep deprived, the brain starts to shut down, it HAS too or I’ll become overwhelmed. It shut down in that I was tired, so tired of it all, to me, living is harder than death. For the last time, I wanted to try another anti-depressant. The NP was reluctant to try anti-depressants, whether it be due to inexperience or the past reactions I’d had to a few others, I don’t know.
I explained to her my whole situation, the lifeless feeling, the anxiety and depression, the sleep deprivation. Casually, she asks if I’d like to go to the ER at Hahnemann to be evaluated and get something to help me sleep.
We naively agree to do this, thinking that it will be quick, and sleep will be possible again. What I have learned from the experience that followed this decision is that YOU NEVER SHOULD ASK FOR HELP. Weather the storm myself, as I had always done before. And NEVER, EVER trust a doctor.
That night was horrid, like something out of a long nightmare where you just can’t wake up. After 7 hours, they finally let me go. I’m not going to go into the details, about the way I was treated there, because that could take up an additional note.
Leaving Hahnemann, with no help, was the straw that broke the camel’s back. I could not believe that I had been literally tortured for the last 7 hours with blinding fluorescent lights, excessive noise, freezing air conditioning (which I detest), and eldless conversations over the reason I was there. They had given me nothing. Just a note that said “Follow up with PCP.” No referrals to therapists, not even 1 little pill to help me sleep. Free to go. $50 lighter in the old pocket.
I had done everything I was supposed to after that. Went to PCP, went on the recommended medication, finally found rest in sleep. But none of this mattered.
All that mattered was that I had Aspergers and I was emotionally unstable. Dr No Name Surgeon undoubtedly made that decision upon reading it on my chart the next day. I received a phone call saying that my surgery (that I had waited months for, filled up tons of questionaires for the study I volunteered for, and paid to have a pre-op exam and bloodwork for) was canceled. Indefinitely. So whatever. I was pissed, but it was nothing to be upset over compared to what would come next.
I called to make my next appointment for bladder injections, since I wasn’t going into surgery, I was going to need them. To my surprise, the NP gets on the phone and explains that the office refuses to see me or treat me in any manner until I’m under the care of a psychiatrist. So I just have this to say, if I’m depressed and diabetic, does that mean a doctor could refuse my treatment? If I was pregnant and depressed, could the doctor refuse to do any pre-natal care until I fulfilled their vague requirements? What it came down to is this: because I was depressed and had Aspergers Syndrome, I must be under the treatment of a psychiatrist in order to receive my treatments.
And what does that mean, “under treatment?” It means that they can refuse to treat me for as long as they want, until I meet their requirement of what they consider to be “under treatment.”
In addition to this lovely situation, the new psychiatrist is going to take all my willpower not to tell the arrogant man off. Within 5 minutes of meeting me, he had dismissed my AS diagnosis and the professional who gave it to me. The further we went into discussion on the day we met, the easier I could see where this man was headed. Yup. He’s headed right for a Borderline Personality Disorder diagnosis. The same misdiagnosis I received at the age of 16. I have no doubt this man will try to relabel me with something that doesn’t fit me. But that’s ok. I’ll have my day to tell him what I really think eventually. Eventually I’ll find a good doctor and leave.
I don’t think any of the bs that occurred would have happened if I had been anyone else. If I had been someone without AS, I would’ve been fine. Treated well and fairly. But because I have AS, it scares the hell out of them. And they run and hide, and tell me that they refuse to treat me until I’m “cleared by the psychiatrist.” Whatever that means. Basically, my prediction is this: 1) I’m going to end up with a shiny, new label and 2) Dr No Name’s office will continue to refuse to treat me.
So we’ll see what happens…

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