Tuesday, August 3, 2010

My Thoughts on My Local Medical Institutions

For the latest ChronicBabe Blog Carnival, Jenni asks how we feel and work around our medical institutions as chronically ill patients.

I live in Prince Edward Island, Canada.  We have universal health care here.  It is reasonable to think that a chronically ill patient would think this was a dream land, compared to the privatized U.S. system.  Sadly, I've never been particularly impressed by it.

I see important (previously-seen) doctors approximately once a month (if lucky!).  A referral can take up to two years.  I have been waiting for a family doctor for two years now.

I can't say that the system hasn't been thorough in their investigations, as I feel like I have had every medical test known to man done!  None of these tests have cost me any money, and in this sense I am very lucky.  My debt instead comes from the outrageous prices of my medications and the lack of government help regarding the fact that I have never been able to hold down a job.

Current plan:

  1. Call Social Services and see if anything can be done regarding disability - even if it is only low-income housing!
  2. Open a joint savings account with Jon to help pay for big purchases/debt.
  3. Try to raise awareness of those who are considered disabled, yet are falling through the cracks of the system.
I am not impressed by the fact that throughout my years of investigations I was labeled as an over-dramatic and crazy patient for the reactions I had to both medications and situations.  Not a health care strong point.

However, I now appear to be properly diagnosed and I am being reasonably managed by the doctors in my life.  The problem with small centers is that they always seem behind the times - even in the case of medical knowledge.  It has been 11 years, but I can just now say I'm beginning to make real progress, even though I feel more than ever to be falling apart.  The mental healing process has started.  The unknown has the ability to do horrible things to the psyche.

What was your experience with being diagnosed??



Anonymous said...

First of all, I cannot believe you have to wait two years for a referral. I would have been dead. The doctors fiddle-fucked around with me before I was diagnosed. They tried to blame all my problems on allergies (I have none) and my Crohn's. I finally was diagnosed after being hospitalized after ER visit. My gastroenterologist found my Addison's disease. I must admit, Addison's is rare, and I guess I was hard to diagnose. But it was a pain in the ass when the doctors kept dismissing me and telling me they couldn't find anything. The problem was...they weren't checking everything, just the normal blood tests. I have a great group of doctos now, but it costs so much to go see them. Even though my Hubby has good insurance coverage, you still need to pay something. Medications cost me about $180.00 a month. I know a lot of people pay a lot more, so I do consider myself lucky.

Sonja said...

To get my endo diagnosed/controlled, it took quite a few doctors, til I found one that would work WITH me. I'm still with her, 8 years later. I actually see her tomorrow.

Since the endo was the first serious (serious as in life interfering) disease I had to deal with, it taught me a lot about the medical field. Thanks to having great insurance under my dad, I never tolerated another bad doctor.

I still have the options to find the doctors that I want to, and I am so thankful for that.

I also learned to stand up for myself, to not tolerate inferior treatments, to educate myself about the diseases I have, the treatment options that are out there, so I can work with my doctor, and not just smile and nod and do what the doctor says. My best working treatments are those we've chosen together.

Emily said...

Another interesting look into health care up north.

For me, getting diagnosed was the easy part - now, the treating is the difficult part. No cure for migraines, but all the treatments out there...wow. There are a lot. One of my biggest struggles is dealing with doctors who seem to not care and/or have given up on me.

VeeVee said...

I live in Britain so medical system is similar... however, it took them 6 months to listen to me when I complained that I was getting sick and didn't know what it was. I already have had seizures for 5 years previous to this so they put down my symptoms to that and my meds. Finally it was just my GP who told me I have CFS/ME... then that was it. Have been left to fend for myself. No advice or info, I have had to go looking up on the internet basically what it was as no one could be bothered explaining anything...
I feel lucky I at least have a "label" but still... what use is it without getting treatment.
I can't believe you have waited 2 years! It's outrageous! I know Britain and Canada are supposed to have free healthcare systems but I guess they are free when there is no one to treat as it seems people die from their illness before they get anywhere these days!
Hugs to you x x x