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Applying for SSDI

I finally have a hearing date, and am so excited to (hopefully) be done with this long process.  I started applying for social security disability over a year ago.  I have had to appeal twice, and finally had to request a hearing. There have been many times over the past year when I considered just giving up.
Unfortunately, so many people with chronic illness have to go through this process here in the United States.  You would think over 3,000 pages of medical records for a 31-year-old is enough proof that something is wrong.  Or that letters from friends, family, and doctors might be enough.  Or maybe the number of conditions I have to deal with.  But no, it's never enough.
Instead, over and over, I have had to explain my medical history to no less than 10 different people, whether it's someone at the social security office, or to get the type of health insurance that will allow me to keep seeing my numerous specialists, or to help prepare my attorneys so they can fight for me…
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Journaling

I have had journals over the years, but never really got into the habit of writing in them on a regular basis.  For me, one of the most therapeutic things when I am feeling down is to write.  It helps me to process whats going on, and to get out those feelings of sadness, anger, frustration.  Sometimes this writing has even taken form in emails sent at 1am to people who may not understand, but can be there for you, no matter what.

But, I found one I like, and it's an app!  It's called the Five Minute Journal.  It's also available in a paper version, but I like how convenient it is to have it on my phone.  Every day when I get up, and every day when I get in bed I try to write in it.

In the morning, it asks you to write down 3 things you are grateful for.  For me, this list stays pretty constant - my mom and Huck are almost always on that list!  It also asks "What will I do to make today great?" This is a harder one for me.  There is also a section for daily affi…

Highs and Lows

The last month has had a lot of ups and downs for me.  I got to see a lot of people that I care about, but also was very challenged by my health.

Highs:

I got to see one of my best friends when he was in Boston for a few days!  We were able to go out for lunch and catch up.  We don't get to see each other often, so it was a nice surprise that we were in Boston on the same day!


I went to Martha's Vineyard for week with a few friends.  I had a lot of fun, and spent a lot of time relaxing on the beach.  It's always my favorite week of the year.


Lows:

Huck was injured during a grooming appointment, which was very sad.  He was limping for a few days, and we had to give him pain medicine (prescribed by his veterinarian, of course).  He is still recovering, and isn't back to his usual bouncy self just yet.


I am always struggling to breath these days.  I think the heat is contributing to worsening shortness of breath, but I also think I probably pushed myself a little too much…

Keeping in Touch

I have found it harder and harder to keep in touch with friends lately. I feel like it should be the opposite, with these smartphones in our hands 24/7, but I just feel more isolated.

A big part of the problem it is that I live at least an hour away from most of my friends, if not more.  There's not a lot of friends that I can call last minute to say "Hey, want to do something?".  Any activity takes more planning, more effort on both sides.  I often hesitate to plan something too far in advance because I'm worried I might have to cancel if I don't feel up to it.

I tend to plan more group events where I have the control, like yearly trips to Martha's Vineyard (which is so so soon!), where I usually have my own car, and it tends to be a slower paced weekend.  I won't inconvenience anyone when I need to take a break.

I need to make more of an effort, I know that.  And if I cancel on you once or twice, don't take it personally.  It's probably just be…

Life Update

The last month has been a little crazy, some good, some not so good.

On the good side, I surprised my brother for his birthday with a trip to Nashville!  I coordinated with his girlfriend, and walked into the restaurant they were eating dinner at the night before his birthday.  I think he was surprised, and we had a fun weekend together. I hadn't seen him since November.

My room has been painted and cleaned!  Or maybe the other way around, cleaned and then painted.  I am not a neat, organized person when it comes to clothes.  I have too many, and probably half of my clothes are either too big, or too small from all these weight fluctuations.  I gave away two big garbage bags of clothes to my neighbors (3 girls ranging from 14-25, and their mom). I'm still working on decorating, but I love the color!

I also volunteered at a 3 day conference for high school sophomores.  I went to the same conference as a teenager, and met most of my close friends through volunteering. It was ma…

5 Things I'm Looking Forward To

Warmer weather, which is hopefully on it's way to the northeast.  I can't wait to wear dresses without leggings, and sandals!
Martha's Vineyard vacation this summer with friends, as always.  One of my favorite weekends of the year!  This year, we are going for a week!
Half hour long phone calls with a certain friend that never fail to cheer me up.
Volunteering for an organization that I've been super involved with in the past, but have taken a few years off.  I'm getting back into it this year by volunteering at the 3 day conference!  I am a little worried that it will be too physically taxing, but I want to try. 
Dating?  Maybe?  I'm out there on all the dating apps apps, and tried a month of Match.com...I haven't had much luck but we'll see what happens.

Cushing's Awareness Challenge - DAY 30!

Today is the last day of this Cushing's Awareness Challenge.  I want to reflect back on the month, finish up any stories I didn't finish yet (I know there's at least one), and share a few of the favorite posts from the month in case you didn't see them. 
First - in unfinished business - I still haven't had the correct PET scan, or heard back from the doctor who ordered it. I have a scheduled appointment with him in June, but would rather not wait that long.  
I saw my new primary care team this past week!  I am so happy with the new situation, and hope that this team will be taking some of the workload off my plate, just by being in the same system as my specialists.  I am usually the one coordinating care, making sure everyone is staying updated, correcting lab orders, because my health is literally in my own hands, but having an actual M.D. helping should make things a little easier on everyone.  
Your Favorite Posts:
Day 4 - I Wish I had Cancer Instead
Day 9 - Sur…

Cushing's Awareness Challenge - Day 29

Cushing's Awareness Challenge - Day 28

My appeal for social security disability was denied.  I feel so defeated. But, will fight on, because what other choice do I have?

Many people with Cushing's, adrenal insufficiency, lupus, and other chronic illnesses cannot work due to their disability.  It is not easy to apply for disability.  There is a lot of paperwork involved, which can be hard emotionally to write about how much your illness limits you.  You have to talk to all of your doctors, and get their support.  Sometimes, even they will not understand the full picture. 
My mom has said a few times in the past week, if people like me can't get approved, who is it meant for?  I think people have a hard time believing someone as young, and as healthy LOOKING as me, could have such disabling illnesses.  I have tried my hardest to continue to work.  If it were up to me, I probably would still be working part time, and being hospitalized routinely because of it. 
I made it through the entire winter, even with mono, with…

Cushing's Awareness Challenge - Day 27

It is hard to be a good friend when you are sick.  Illness is all consuming.  Not many people my age really understand that.  At 30-something, most are consumed with careers, finding who you want to spend your life with, having kids, even buying homes.  Illness is a foreign subject.  No one knows what to say when I bring up anything health related.  The room gets quiet.  
On the other hand, illness is my whole life.  I don't know anything about having a real career, having a boyfriend, buying anything major, let alone a home.  And kids are not even on my radar yet.  My life is filled with medications, appointments, side effects, disability applications, lab tests, and trying to keep on top of all of that, because I can't count on anyone else to. I live a lonely life.  Not on purpose, but almost by default.  Sure, I have friends.  I even sometimes talk to, or see these friends.  But we often can't relate to each other's worlds.  

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