Friday, March 24, 2017

31

This weekend I will 31.  Every year on my birthday, I have the thought, wow, I made it to this age. There was a time where I didn't think I would get to be 31.

I know that sounds dramatic, but with Cushing's Disease, multiple major surgeries, you know the rest, I have had multiple times where I didn't think I would, or didn't want to, live through it.

My life is far from perfect now.  I am not working.  I was denied disability again. I wonder what I'm doing with my life, how will I ever make a difference in this world. What is my purpose? Why am I here, still, today?

But there are always things that are great.  I live for Huck, I live for my family, I live for the hope of a better day, a day without illness.  Right now, I'm living for planning a family vacation next summer.  Or a trip to MV this summer.  Or dinner with friends Saturday night.

It is sometimes too easy to give up. Feeling like I can't do this for another day.  I can't wake up in pain again, or lay awake another night. I can't drive to the hospital again.  I just CAN NOT.  But I think of the reasons why I keep going, and it gets me through another day.

I hate to be so depressing on my birthday, but this is what is real.  Sometimes, what you see on someone's blog, or on social media, isn't telling the whole story.  EVERY SINGLE PERSON on this earth struggles.


Tuesday, February 28, 2017

Rare Disease Day 2017

Today is Rare Disease Day!  This day creates awareness for all that live with rare diseases.  I have multiple rare diseases.  First, I had Cushing's disease, which is considered a rare disease because it affects a very small portion of the population.  I have a feeling that Cushing's is not actually a rare disease, because many people go undiagnosed.  I also have adrenal insufficiency, which is like Addison's disease without the autoimmune component.  Living with a rare disease is very isolating for many people.  These diseases don't have names like "cancer", that are recognizable, and your friends and family have probably not ever heard of them, and people don't understand how debilitating they can be.

I always get a little excited to see all the posts on social media from my Cushing's community on Rare Disease Day or Cushing's Awareness day (which is in April, on Harvey Cushing's birthday). It is nice to see Facebook filled with information about Cushing's, everyone trying to bring awareness.  I know for myself, before I was diagnosed, people didn't see that I was sick, they said that I was fat, or overweight or obese.  Unfortunately, that led to a delay in my diagnosis, which is common among Cushing's patients.

Cushing's symptoms include, but are not limited to:

Weight gain, specifically central obesity
Thinning arms and legs, due to muscle loss
Severe stretch marks, called striae
Moon face
Susceptibility to illness
Poor wound healing, or delayed healing of wounds
Kidney stones
Acne
Buffalo Hump
Emotional lability/depression/anxiety
Menstrual irregularity or amenorrhea in women


To find out more about Cushing's, or rare diseases in general, please take a look at the following links.





 Global Genes






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