Skip to main content

Again?

I spent a few days on Martha's Vineyard with friends, as I have pretty much every summer since we were in High School and college. I wasn't feeling my best, but didn't want to slow anyone down, so I think I pushed myself a little bit too hard.  I had a wonderful time, but when it was time to go back to work last Wednesday, I was feeling awful.

It seemed as if the same shortness of breath and high heart rate that happened in January 2015 was happening again.  Just to clarify, there is a "daily" level of shortness of breath that I've sort of gotten used to, and then there's the shortness of breath that happens occasionally that prevents me from even standing for more than a few seconds.  This time, it was the second.

I decided to try to go to work as usual, because maybe it would get better as the day went on.  Instead, I ended up leaving work at 11:30 to drive myself to MGH.  I spent most of the day in the ER, but they didn't figure anything out or treat me.  So here I am, a week later, still living from the couch, waiting for pulmonary appointments and call backs from all of my doctors.

Once again, I feel like medicine has failed me.  I am searching for answers myself, I combed through every single lab result, image report, and more to see if maybe I missed something.  This shouldn't fall on my shoulders, someone from my medical team needs to be fighting this with me.  It just doesn't feel like I have that at the moment.  We tried talking to patient advocacy and all that did was cause these doctors to focus on covering their butts instead of focusing on the actual problem.

So, until we get some answers or this just magically gets better, I'll be here, probably watching the olympics all week. If you have any ideas, please leave them in the comments.  Thanks for "listening".

Comments

Popular posts from this blog

Talk About the Sh*t you Don't Want to Talk About

I haven't updated this blog in a very long time.  I actually deleted a ton of posts while I was applying for social security disability. I posted about Cushing's Awareness day earlier this week on facebook, so I guess I'm in a sharing mood. Anyway, for anyone who even reads this, I was watching a documentary on Netflix about a teenager with anorexia and mental illness who found meaning in her life through yoga. (It's called I Am Maris). It's kind of the reason for this post. To start - let's go back to June 2018. My grandmother died.  She lived a wonderful long life, but it was especially hard on me.  She was the reason I got out of bed every day, my best friend, and so much more. I actually don't remember how I got through most of the summer. In the span of two weeks at the end of August, my mom turned 60, we went on a family vacation to the vineyard, my best friend got married, and I wanted to kill myself.  Yeah, you read that right. The day after re

10 days at MGH

It's been 10 days, and I am still in the hospital.  I walk two or three (very short) laps around this floor and my heart rate is upwards of 130, my lips, fingers, and toes are increasingly blue-tinged.  My oxygen saturation levels are even lower now, after sitting here for over a week.  So what have we accomplished so far?  Let me tell you. I had the arterial blood gas sampling done on Sunday.  It took a couple more tries but success!  It was of course, painful but nothing that I couldn't handle, especially if it meant an answer and an easy fix.  My arterial blood looked very dark as she was drawing it out, not the bright red oxygenated blood you usually see from arteries.  The doctor commented on this, and said that it was very interesting. Unfortunately, I did not have an abnormal level of methemoglobin.  So that ruled out methemoglobinemia .  The plan was to have an echocardiogram on Monday.  After waiting most of the day, I got pushed to the next day's schedule

MGH Round 2

Hi all, I've been pretty absent from blogging/life activities over the last month or two because my whole life seems to be consumed again by illness and complications from Adrenal Insufficiency.  Right now, I'm typing from my private room at Mass General, where I have been since Saturday.  Before that, I was at a local hospital for a few nights. After being discharged with no answers for my shortness of breath in January, and then refusing further treatment for Lupus related hemolytic anemia, I went back to work and tried to continue on as normal.  This worked for a while, but then enlarged lymph nodes started popping up all over my neck.  I was seen a few times at my PCP's office, and at first thought it might be the start of a virus, but when they didn't disappear after a few weeks, I had an ultrasound to see if we could find a cause.  It turns out, aside from multiple slightly enlarged lymph nodes, I had one whopper lymph node on the left side of my neck, which w