Skip to main content

Health/Life Update

With so much going on the last few months, this blog has been severely neglected. Events in the last week or so have inspired me to be better about blogging.

For those of you who don't know, possibly the biggest news in my life recently is....

I GOT INTO SCHOOL! I will be going to school in Maine to finish my biology degree and then continue onto medical school. I couldn't be happier about getting in. I have felt like most aspects of my life recently have been out of my control. I don't feel like I am where I thought I would be when I started this journey, now many years later, I was forced to move back in with my mom due to financial reasons, I'm not exactly thrilled with my job situation, I miss having friends around (I have no social life whatsoever...) and I feel like all of these things are finally starting to turn around with this little glimmer of future coming my way!

In other exciting news, I have some upcoming appointments. I've been at a standstill in terms of my health the last few months and I can't seem to figure out what is wrong. I still swell like crazy, I have stopped losing weight (after losing almost 40lbs since August) and generally just don't feel WELL. I have shared these concerns with my PCP, who is suggesting that I see a local endocrinologist as well as my favorites at MGH. I think this new endocrinologist might have more time to get super involved over the summer and hopefully straighten things out before I move. I also have an MRI scheduled (we somehow skipped over my 1 year post-op MRI of my pituitary so we're doing it in July) and a follow up with my endocrinologist at MGH. I'm hoping between all of these brilliant doctors, I will walk away with some new ideas to help me feel better.

With the news of Sarah's death earlier this week, I feel like I was overcome with the need to help others like us. Too many people don't get the medical help they need with this disease. I was dismissed for almost 4 years (and had symptoms much before that) before finding doctors who would listen to me and help. It took another 18 months after that to get a diagnosis. What other disease can you think of that patients often diagnose many years before their doctors? Have you EVER heard of someone going to their doctor for months, years, sometimes decades and still not receiving the help they need?

I can't wait to be an endocrinologist (in 6-7 years!) and hopefully help more people. Cushing's Disease IS FATAL if not treated, and I think a lot of people forget that.

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