Skip to main content

Cushing's Awareness Challenge Day 5 - Being Prepared for Appointments

Being prepared for appointments is something anyone with a serious illness or chronic condition should do.  Through my experience with Cushing's, I have learned to look up my test results ahead of time and try to understand what they mean and what that means for treatment, medication adjustments, surgery plans, etc.  I also like to go to appointments with a list of questions I have for the doctor or things I want to discuss.  I sometimes just keep a running list on my phone so I won't have to sit down and think of all the issues or questions I've thought of since my last appointment.

 I sometimes write things down while I'm talking to the doctor so I can remember things I have to do before my next appointment or things to research more.  I can always request records of my visit incase I have unanswered questions.  Some hospitals have an online medical records system that you can log into and get certain instructions or test results, others you can call or email medical records and either pick them up or get them faxed or emailed. This is useful when you are seeing multiple specialists that aren't always at the same hospital.

One of the best things to do is join a support group, either online or through your hospital so you have people who are going through the same disease.  My Cushing's support group can help me decipher test results, and we all have questions about medication and many other issues.

I have created wonderful relationships with the doctors I see most because I don't just sit and listen to them, every appointment is a conversation, and I almost never leave the office with unanswered questions.  

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