Skip to main content

No good news yet...

So I'm not doing the clinical trial.  My midnight salivary tests have been too low to qualify me for it.  Everything else was there, I just needed 1 high but my body was not cooperative, as usual.

I go back on May 10th to see what we're going to do next.

In other news, I've developed another symptom.  I noticed at work last week that my forearms were covered in tiny red dots.  They didn't blanch, so I asked one of the doctors I work with about them.  She said they were petechiae, which is little burst capillaries under the skin, and told me to call my doctor ASAP so they can run some tests.  I went the next day to my PCP's office, and the doctor there was great.  He was very interested in my whole Cushing's journey, and agreed with the doctor from work that they were petechiae and ran some tests.  My blood counts were good, (they look for low platelets or other abnormal counts) and I found out today that I don't have vasculitis, which is an autoimmune disease that breaks down your blood vessels.  He thought that might have been the reason for the petechiae, since I have a strong family history of auto immune diseases anyway.  Now I have to go back on Monday to get checked out again since they're at a loss!

The testing continues, I have to do a few more UFCs in the coming weeks.  I thought maybe I was done for a little while, but I got a letter saying they want more.  I should have done them last week but wasn't thinking and didn't get the letter in time, so I guess I'll just have to do them now.  Last week I am pretty sure I was in a high cycle.  It's DEFINITELY cyclical again.

So that's it for now, more mysteries and no explanations yet.

Comments

Post a Comment

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
Post a Comment
Read more

The Challenges of Getting a Diagnosis

I have been asked about this so many times, and talk about it a lot, whenever someone asks me about Cushing's.  So many people have the same experience - KNOWING you have Cushing's, and seeing 5, 10, 20, or more doctors over the course of many years before you officially have a diagnosis.  I would say this is one of the most common links I have with other "Cushies".  We all fought for a diagnosis, heard we were just fat and depressed, waited with hope after every test, until a day came when one test came back high, or a brain MRI showed a tumor in the pituitary gland. I think the reason I haven't written about it is because it's one of the hardest things to sit down and spend time on.  It's painful, and of course, I can't help but wonder what my life might be like today if I was diagnosed sooner.  Would I have needed an adrenalectomy?  Or for that matter, a second pituitary surgery? Would I have as many health issues after Cushing's?  It's ha
5 comments
Read more

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
2 comments
Read more