As my body attacks itself - my journey with autoimmune disease & chronic pain
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Category Archives: Treatments

Nov12017
5

Resuming after a not-so-brief pause

My last post was July 2015.  It’s now November 2017.  I’m not sure at all, even in the slightest, how 27 months have gone by.  I have thought many, many times about what I want to sit down and write and I never have gotten to it.  But several things happening lately have convinced me… Read More

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Feb242015Feb 25 2015
9

Just one example of daily impact of invisible chronic disease

My husband and I were on the way home from a parent meeting for parents of kids going into middle school next year (first, let’s stop and acknowledge that I’m so not ok with my boy growing up!). I don’t even remember how it came up but I described to him just one example of… Read More

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Feb62015Feb 4 2015
0

Fatigue is the ant that carries his own sledgehammer

So when the doctor completely reversed his plan of attack after 8 months with zero explanation (which lead to me “firing” him and traveling half way across the country to see a Sjogren’s specialist), he did give a slight explanation… He said that treating my Sjogren’s with immunosuppresive meds would be “like killing an ant… 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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Jan132015Jan 14 2015
1

The difficulty of having a glimmer of “better” for only a brief time

When I came back from Philly I had an action plan.  The dr made sure I took careful notes and knew what to do first, second, and so on. My first step was 2 weeks of prednisone to determine which symptoms would be relieved (because they were due to inflammation) and which wouldn’t (because they… 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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Dec52014Jan 14 2015
1

When I realized I hadn’t given up yet

After writing my post about Deja Vu and realizing that I’m pretty much exactly where I was a year ago despite spending 8 months working with doctors at KU Med (which equated to an average of 20% work-hour lost time with all the appointments and traveling back and forth), I started to feel like I… 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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May292014Jan 14 2015
1

Temporarily on hold until I can deal with it

I’ve been putting off posting this – mostly because I’m putting off dealing with it all until I can come up for air and do so properly. See, it’s what I call “crazy season” – it’s the time of year that’s filled with graduations, end of school events, dance recitals (and final competitions for the… Read More

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Mar32014Jan 14 2015
3

Will anticipation lead to a bigger let down?

If you’ve been following along on my blog, you know that I switched to KU med (teaching hospital an hour away from where I live) last October. This was after two years of incorrect diagnosis, figuring out correct diagnosis and 8 different medications that either didn’t work at all or, even worse, I reacted badly… Read More

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  • Autoimmune Mom
  • American Autoimmune Disease Association
  • Arthritis Ashley
  • But you don’t look sick
  • Counting My Spoons
  • Jennifer’s Way
  • Reasonably Well
  • Sjogren’s Syndrome Foundation
  • Sjogren’s World
  • Thoughts and Ramblings on Life, Love and Health

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