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Self-Advocacy in the Age of a Broken Health Care System

Author: Lori W

After a year of mysterious symptoms, I was diagnosed with a rare kidney disease. Little did I know that would only be half the battle.

Back in the US-ER

I'm typing this all from my phone so forgive the errors. I'm not even sure where to start with all this. Last week, I had two clinic days but otherwise worked from home. I actually did okay aside from being tired. But shortly after that, things began really diminishing. This week, I was supposed to … Continue reading Back in the US-ER →

Lori W Uncategorized Leave a comment November 18, 2020 4 Minutes

Dwindling Options

I’d been calling Dr. F, the local nephrologist, since Tuesday to follow up on the results of the biopsy.  Of course I wanted to see the report, but Dr. A in Pittsburgh was very anxious to see the results.  But like everything else in this battle, nothing comes easily.  On Wednesday, I was told the … Continue reading Dwindling Options →

Lori W Uncategorized Leave a comment November 7, 2020 6 Minutes

It’s All Going To Shit

What a crappy week. In no particular order: Between the back up of toxic fluids in my system combined with the prednisone, I’ve gained about 35 pounds in the past few weeks. This is more than prednisone alone, for sure.  As I’ve mentioned a million times before, this water weight is SO much worse than … Continue reading It’s All Going To Shit →

Lori W Uncategorized Leave a comment November 1, 2020 3 Minutes

Say It Ain’t So

Wednesday of this week I was completely wiped out.  From the get go. I went to bed pretty early Tuesday night, after taking a nap, and woke up Wednesday morning just dragging. As soon as I got to clinic, about an hour’s drive, I fell asleep in the car. I mean I just zonked out. … Continue reading Say It Ain’t So →

Lori W Uncategorized Leave a comment October 17, 2020October 17, 2020 6 Minutes

What Are We Missing Here?

Yesterday I had more lab work done, of course.  If a week goes by with no lab work, I just might be dead. This was for Dr. A in Pennsylvania. Monday I go back for another round for my local doctor here. This morning, bright and early, I got a call from the nurse in … Continue reading What Are We Missing Here? →

Lori W Uncategorized Leave a comment October 9, 2020 4 Minutes

Is It Nap Time?

I went to hematology Friday for my routine lab work. I was looking forward to this because I was curious as to what my hemoglobin would be now that I was no longer “diluted” with all the saline I was given in the hospital. As crappy as I feel, I knew it had to be … Continue reading Is It Nap Time? →

Lori W Uncategorized Leave a comment October 5, 2020 3 Minutes

Sprung

Saturday night I slept GREAT. Even with the nurses coming in to check vitals and even with getting up to go to the bathroom, I was just O-U-T. Fairly early Sunday morning, my local nephrologist, Dr. F, came in. Luckily for me, she was doing nephrology rounds that day. She did a basic assessment, and … Continue reading Sprung →

Lori W Uncategorized Leave a comment September 29, 2020October 1, 2020 8 Minutes

Well That Didn’t Last Long

This blog entry is coming to you live from the emergency room at Lovelace Downtown hospital.Yesterday morning I woke up feeling pretty good. Not as good as Thursday, but definitely better than I had the week prior. I went to clinic and saw five patients, ending about 12:30. I was packing up my gear, ready … Continue reading Well That Didn’t Last Long →

Lori W Uncategorized Leave a comment September 26, 2020October 1, 2020 8 Minutes

A Good Day

For the past week, I’ve felt pretty crappy. Fatigue, as I mentioned, but also persistent nausea. Not enough to throw up, but just non-stop gut pain. No fever, and it always seemed to be worse in the morning. I’d have to lay down several times while getting ready for work.  I think I probably noticed … Continue reading A Good Day →

Lori W Uncategorized Leave a comment September 24, 2020 2 Minutes

More Medication Changes

Monday evening I got a message from Dr. A saying she had tried to call me but there was no answer. I was out of town for work and of course didn’t have cell service out in the boonies. She said she got my lab results back from Friday and my creatinine levels were even … Continue reading More Medication Changes →

Lori W Uncategorized Leave a comment September 18, 2020September 21, 2020 5 Minutes

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