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

My Second Full-Time Job

No joke, having a chronic illness requires so much time, effort, and management. I don’t know if this is the case in other states, but it sure as hell is here. I was trying to get a refill on a medication from my doctor in PA. She said she had sent it to Walgreens here … Continue reading My Second Full-Time Job →

Lori W Uncategorized Leave a comment May 27, 2021May 27, 2021 8 Minutes

Changes Are Afoot

Get it? Afoot? Because I’ve been having foot issues? Yes I know… super lame. Ha. I saw Dr. T, the oncologist, yesterday. Normally I just take notes at these appointments in my phone but for some reason I brought a pen and notebook yesterday. Good thing, too. It was a lot of information. Because my … Continue reading Changes Are Afoot →

Lori W Uncategorized Leave a comment May 21, 2021 7 Minutes

I Need Some Sleep

Last week was very stressful. Wednesday at the lab my hemoglobin was 9.0 so I got an Aranesp shot, first one in a long time.  Of course I got the Velcade shot too. Man, that Aranesp shot made my arm very sore, which is unusual.  Usually those shots only hurt during the administration, except my … Continue reading I Need Some Sleep →

Lori W Uncategorized Leave a comment May 17, 2021 8 Minutes

It’s My Party and I’ll Cry If I Want To

I know quite a bit of what I post is repetitive information, so we’ll get that over and done with first: Feet: still bothering me.Fatigue: yep, still tired as shit pretty much most of the time.  I feel like I could sleep for a week, and I’d still be exhausted.BP: waaaaaay better. Wednesday at the … Continue reading It’s My Party and I’ll Cry If I Want To →

Lori W Uncategorized Leave a comment May 1, 2021 7 Minutes

Mixed Bag

I’ll get the semi-bad crap out of the way right off the top:  I didn’t sleep again last night. Not for one second. And a three-and-a-half-hour drive to clinic today (and back home tomorrow). I am beat. My feet are still bugging me but I’m just going to wait it out. They’re not terrible, but … Continue reading Mixed Bag →

Lori W Uncategorized Leave a comment April 22, 2021April 22, 2021 4 Minutes

Save a Life

Not a great deal to report this week, except to say that my hemoglobin Wednesday was 10.8, absolutely the highest since at least April 2019, when I first went to rapid care due to my dizziness symptoms.  (It was 9.4 then.)  I’m sure this is due to the bump in the Aranesp, but whatever works. … Continue reading Save a Life →

Lori W Uncategorized Leave a comment April 17, 2021 3 Minutes

Small World

Another sleepless Wednesday night. And when I say sleepless, I mean not one minute of sleep.  Zero winks. Dexamethasone is definitely the culprit. I’m dragging today but it will probably be worse tomorrow. Luckily today I didn’t have a long commute as I was in the office for a bit then working from home. But … Continue reading Small World →

Lori W Uncategorized Leave a comment April 9, 2021 4 Minutes

Balloons

Mark this date down! April 3, 2021… my last day of prednisone! From May 1, 2020 until yesterday, that cursed drug has been running through my system. Now it finally gets to be on its way out. I am advised to watch for fatigue (uh…) and dizziness. Apparently with long-term use of prednisone, the adrenal … Continue reading Balloons →

Lori W Uncategorized Leave a comment April 4, 2021 6 Minutes

Enjoy Every Sandwich

Welcome to Lab Work Wednesday! My hemoglobin was 9.9 today so I got a shot of Aranesp. But it was just barely below the 10.0 cutoff so hopefully in two weeks it’ll still be high enough that I don’t need a shot. I haven’t gotten the “official” results of the 24-hour urine test yet but … Continue reading Enjoy Every Sandwich →

Lori W Uncategorized Leave a comment March 17, 2021July 22, 2022 3 Minutes

I Yam What I Yam

Are you sitting down? Are ya? How about mostly GOOD news for a change? Overall, I think things are improving.  I am still tired a lot but I definitely have more energy than a month ago. I’m sleeping better most of the time, and I can get through the day better now than I could … Continue reading I Yam What I Yam →

Lori W Uncategorized Leave a comment March 10, 2021 5 Minutes

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