Wednesday, January 04, 2017

2016

This past year started out a little stressful. 

I was in NH with friends, and when we went to leave, my friend's rental car had been towed.  As it turns out, it was towed to the nearest airport, which was in Maine, so instead of driving right home, we stayed an extra night, and took a long detour to go back and get the car. At least it was more time spent with friends!


Highlights of the year:

I spent a ton of time with my grandmother this past year.  On my days off when I was working, I took her to appointments, ran errands for her, or just sat at her house for a few hours to keep her company. I am so grateful for the time we spend together. 

I did my own genetic testing, through 23 and me, which I'm still trying to analyze almost a year later. I hope eventually it will be useful to find out if I do have some kind of genetic disease causing all of these issues. 

I also attended an investigational hearing as a result of my discrimination complaint I filed against my HR representative.  I remember being so proud of myself, I went in without a lawyer, and was able to get through most of the hearing without crying.  I am still waiting for a decision to be made.

My mom threw me a surprise birthday party! Well, it was almost a surprise.  I was so upset about turning 30 and not being where I wanted to be, and just having a pity party, and she felt bad and told me.  It was still fun!  I got to spend the afternoon with some of my best friends, and came home to a party with some of my family.  All in all, it was a good day. 

I went to ENDO 2016!  I got to spend the weekend at the Cushing's Support and Research Foundation Booth, and I loved seeing all the posters.  I learned a lot!  

I finally went to Nashville to visit my brother. That was a fun trip!

I went to Martha's Vineyard 3 times this summer, once with friends, once with my mom, and once with our neighbors. Huck even got to come! 

One of my cousins got married!  She had a fun reception a few months after her actual ceremony.  It was fun to hang out with all of my cousins!

I QUIT MY JOB!  FINALLY!



Low Points:

I took a ride in an ambulance after almost fainting at work.  Not fun.  Luckily I didn't have to stay in the hospital overnight.

My grandmother's twin brother died this summer.  It was sad for all of us, he was the closest thing to a grandfather, as both of mine have been gone for a long time.  But, at least he is not suffering anymore with Alzheimer's. 

My dad had to have emergency brain surgery, then a week later he had open heart surgery to remove a blood clot.  It was scary for everyone.  Luckily, he is doing much better now.

I have been pretty sick this whole year.  I am constantly tired, I get very out of breath with any activity, and I had a number of acute illnesses.  I was admitted to the hospital right before Christmas, and have been sick ever since.  Hopefully in 2017 we can figure out what is causing this and what we can do to improve it.  



Huck at the beach

Me at the beach

Friends at Menemsha

Sunset at the end of my street


Nashville!

My Birthday (after the surprise party)

Sunset at Menemsha Beach
At my cousin's wedding







Wednesday, December 14, 2016

I Quit

I finally, after over a year of talking about it, I FINALLY quit my job. My discrimination complaint is still pending, and could take 18-24 months from the date of my complaint (September 2015) to move to the next step.

I planned and planned to take this step, but just had trouble pulling the trigger.  I was afraid of having no money, afraid to have nothing to do, and afraid to tell people. It's embarrassing to not be able to work.  I know, I have a legitimate reason not to at this very moment, and I'm eventually going to work again. It's a tough call.  But, after talking to my mom, she expressed great concern for my health and wellbeing (what's left, that is), if I kept going with no changes.  She was waiting for me to end up in the hospital again, and afraid that my body physically could not take it anymore. 

So, I quit.  I gave my notice in October, tried to tell some of my coworkers but didn't feel like my leaving was worthy of celebration. It was sad.  Don't get me wrong, I was not the biggest fan of the job I had, and dreaded going in every morning, but it was difficult to leave. 

On my last week of work, my dad was acting strange.  He wasn't remembering things, and kept repeating himself.  I asked him to please go to the emergency room but he didn't want to, and had just seen his PCP, who diagnosed him with an ear infection and sent him home on antibiotics.  The next day, he had a CT of his head which showed a cyst in his brain, and it was causing severe hydrocephalus.  He was rushed to Brigham and Women's hospital to have surgery.  

The surgery was a success, but he didn't seem right after, he seemed worse than before.  He attempted to go home but ended up back at the hospital the next day.  Again, he tried to go home but he collapsed into his apartment.  Back at the hospital, they found a blood clot in his lungs, and he was sent back to Brigham and Women's for treatment, but when he got there, it was worse than we expected.  He needed emergency open heart surgery to remove the clot, NOW.  

My mom drove me up, and I just made it in time to see him before he went into surgery.  He spent about a week in the cardiac unit, and then went to a rehabilitation hospital for another 3 weeks.  He's now home, and doing well.

So, things did not go as planned for any of us! I am just now adjusting to all this free time.  My mom gifted me a membership to a gym, so I could start swimming again.  I'm still waiting for results on an exercise test I had in November. I applied for SSDI benefits, and am still waiting on a decision.

Hopefully the next few months will be less stressful for everyone! Happy Holidays!



Tuesday, September 20, 2016

Waiting

Sometimes it feels like I spend my whole life waiting.  Waiting for the next appointment, waiting for test results, waiting for the next time I have enough energy to see friends. I feel like I'm waiting for my "real" life to start.  A "normal" life.  One without illness.  One without hardship.  One it seems like everyone but me has.

I think this is one of those totally weird things that most, if not all people who have had Cushing's can relate to.  I remember saying this so much before I was diagnosed, I would be so thrilled to be diagnosed with ANYTHING, no matter how horrible, just to finally have an answer, for the wait to be over. I used to joke about how relieved I would be if someone found a tumor.  I actually WAS relieved when a tumor was found.  I called everyone I knew to celebrate.  It's so morbid, but it is an emotion so widely understood in the Cushing's community, at least to my knowledge.  You don't celebrate when you are diagnosed with most things, but after waiting for 5, 6, 10 years or more to get a diagnosis, it's the light at the end of the tunnel.  You can finally move on.  You don't feel crazy anymore.

Well, I'm back to that same mindset.  I was out of work for the entire month of August, well, except for 1 day.  I couldn't breathe, couldn't sleep, and just felt all around horrible.  I started the absence with a visit to the MGH ER, because I was so short of breath, it had gotten so much worse.  They sent me home, because I didn't have a pulmonary embolism or pneumonia or any of those more dangerous things.  I felt so defeated. After two months waiting for appointments, waiting for test results, waiting for call backs, I am so ready to have an answer, or a direction, that I don't really care what it is.

For now, back to waiting.