As my body attacks itself - my journey with autoimmune disease & chronic pain
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Category Archives: Tracking medical records & history

Jan302015
1

Connecting dots

Sometimes it takes me a while to put together different pieces of information with this whole health-issues thing! This week I was sitting at my cubicle desk working and complaining to myself in my head about how I always feel sweaty yet cold and clammy.  All of the sudden I thought “wait – that’s how… Read More

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Jan212015
0

What to do with your medical data

I’ve been in several conversations lately about the need for patients to get their medical records and data. I wrote a post recently about the need to read our medical records as I found 16 errors in the write-ups from 6 visits with a doctor. Julie Ryan asked me to write a guest post for… Read More

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Dec172014Jan 14 2015
2

Back from Philly

Thank you so very much to everyone that has emailed, tweeted, messaged, prayed for and thought about me as I went to Philly to see a Sjogren’s specialist after my non-satisfying experiences with local doctors. The experience was definitely worth the time and expense of the trip!  He was a wonderful doctor – thorough, asked… Read More

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Dec112014Feb 3 2015
0

Read your medical records!

In prep for my visit to Philly next week to see a specialist, I have been organizing and summarizing my medical records. I went through the process to obtain them all this summer (Rheumatologists Dr. A, Dr. B and Dr. C, Ophthalmologist Dr. O and Neurologist that I just realized I never “named” so let’s… Read More

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Sep242014Jan 14 2015
2

Headache Mystery Solved!

I now think going to the doctor when you’re miserable in pain is the equivalent of going to grocery store when you’re starving – you’ll grab at anything that fixes your immediate problem, no matter how bad it may be for you!  Although a doctor seeing you in pain may help them take you more seriously (how… Read More

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Jun52014Jan 14 2015
3

A letter to my doctor – standing up for myself for trying to treat my fatigue

You may have read my reaction to my latest rheumatology appointment.  When I was told the treatment that my doctor had been talking about for 7 months had all of the sudden become “unwarranted” in his mind. I’m still not through my “I have to get through these three weeks before I can process what’s… Read More

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Feb192014Jan 14 2015
1

Proud of myself!

I’ve talked about my issues with questioning diagnoses, switching doctors, getting second opinions.  I want to be a “good patient” and I, in general, trusted what medical professionals told me.  I didn’t suggest tests or labs, I didn’t second-guess diagnoses, I didn’t “fire” a doctor even when I felt like they weren’t meeting my needs.… Read More

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Feb52014Jan 14 2015
2

Active participant in medical care or hypochondriac?

I wrote in my last post about my increasing muscle weakness. I’m afraid that was just the beginning.  It’s continued – sometimes worse than others, but almost always present since then.  It’s primarily in my quads and upper arms.  Going up stairs (even the half-flight in my house) is becoming difficult – especially if I’m… Read More

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Jan222014Jan 14 2015
1

Neurology, muscle weakness and another “come back in 2 months”

As I mentioned in my last post, I was scheduled for an appointment with a neurologist after being able to more accurately and effectively communicate what’s going on with my hands.  I’ve tried to describe it consistently as “they just don’t work right…they don’t do what my brain tells them to do…they’re clumsy and weak…I… Read More

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Nov242013Jan 14 2015
2

Letters

I didn’t realize, and I would guess most people don’t, that every time you see a specialist they send a letter back to your primary care physician.  I first realized this in 2011 when I asked my PCP’s nurse to copy any information from my first visit with a rheumatologist in 2008.  I expected to… Read More

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  • Autoimmune Mom
  • American Autoimmune Disease Association
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  • But you don’t look sick
  • Counting My Spoons
  • Jennifer’s Way
  • Reasonably Well
  • Sjogren’s Syndrome Foundation
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