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Showing posts from October, 2016

When You Know Your Body Best

Anyone with a chronic illness can probably tell you they know their body better than any medical professional. To say that is true is an understatement. Look at me, I probably knew at age 16 or 17 I had an AI disease but it took years for doctors to catch on. I knew steroids where helping my gastroparesis a year ago but no one really believed me until I was diagnosed with Sjogren's. This is not an uncommon phenomenon.

When I get a fever it only takes me a few hours to differentiate between an autoimmune fever and something more serious. However due to having a port the protocol is any time I have a fever of 100.4 or higher I am supposed to go to the ER. I have pushed the limits on this a couple times, making appointments with my PCP instead of going to the ER or waiting a few hours to see if it will go away. This approach has gotten me a few lectures but never caused me harm since I know my body.

Over the summer there was one incident where I was at work when the fever came on and…

A Little Rant About the Past Couple Weeks...

There is a lot I have to write about here. I defiantly need to post a recap of the Global Genes Summit I went to a couple weeks ago but I am waiting for some things on that to come together.

Since then my life has been a little hectic to say the least. I came back from the summit a little early for my senior homecoming game and it is a good thing I did because there was about 10 hours between landing at the airport and being in the ER. Some how my tube seemed to do something odd. Cue me doubled over in pain but waiting till my home nurse was coming for a port access any ways. Of course when she came she called GI and it ended with me going to the ER and being admitted. I ended up being inpatient for 3 nights till interventional radiology (IR) could get me in for a tube change.

Meanwhile during this stay my port started acting funny. It was being super sluggish and hard to flush to the point my nurse had the IV team come and put TPA(a powerful blood thinner generally used in strokes bu…