Life With PH, Personal Life


Coming back from Indianapolis has been rough to say the least. Not because I’m tired (I definitely am), not because my symptoms have become gradually worse, and not because we don’t have some of the same amazing places…but it kind of put me in perspective. In Indy, I felt like I had reached exactly a place I belonged. People knew who I was, knew my work, credited my work, and I felt like I was doing something right. Now I’m back here where I explain myself, and yet I’m still forced to find a college degree to find some sort of “work” that will pay the bills.

What am I doing? I mean really. I work almost thirty hours a week with maybe a couple of days off from the place that I’m just existing at. Its money, and that’s it. Is that going to be my life? Get up, drag myself to some regular job, where I work late hours doing “whatever” type stuff, then I come home exhausted to try to power through my real work? My real life’s passions? Does that not sound exhausting to you?

Everyone always asks me what I’m doing, what school I’m going to, and I really have no idea how to answer. I love to teach, I hate education. I want teaching to be organic, and in this world its the furthest thing from that. Screw working at a school, because its like picking at a scab. I cant do it. I would love to write, but where? How? Who would read it? How would I get paid? Dont forget, I need health insurance! I would love to own my own business, but its an infinitive circle of the same questions….


I really have no idea which way I am going. I am just standing in a spot that has so many different, weird, and confusing paths that I just feel like sitting down for a while. The moment I do, I’ll realize that I should’ve done something a long time ago, and I’ll watch all these people I knew with their careers, kids, houses, marriages, and here I am…just hoping for direction and medical insurance. I’m really not throwing a pity party. I’m just really lost.

I  need help y’all. If you have any words of wisdom, feel free to comment. The end of my rope isn’t even existent anymore.


Instagram @haleyann92

Song of the Week is the beautiful Without Words from the TFiOS soundtrack. Its beautiful, and lost is exactly how Augustus and Hazel felt when this song played. You can purchase Just Breathe shirts still!!!! Personally email me to check your size. There may be more items added to the shop section soon!


1 thought on “Adrift.”

  1. Hi Haley,
    I’ve been following your blog for quite a while now. I know what it’s like to lose direction and not know which way to go with my life. I ended up having to quit my job because my body just couldn’t keep up with the demands of working even part time and before that I worked full time for nearly 3+ years. This was in 1993 when I had to file for Social Security Disability and wait for 18 months for Medicare to kick in. The financial burden of having my income reduced was slightly harsh because I didn’t make that much money to begin with but luckily I have family who helped by covering the cost of health insurance through COBRA from the job I “retired.” I’m not saying that you HAVE to quit your job but maybe you can file for Social Security Disability. They have a Trial Work program as well as a program to train you for a different job that you could do with your disability in mind. It would be worth checking SSD to find out what your options are. If you choose not to go the route of SSD/Medicare, there is the option of checking out the Affordable Care Act for insurance because of the fact there are no restrictions of pre-existing conditions. Plus, you can remain covered under your dad’s insurance until you turn 26 yrs old. Take one day at a time. Email me if you want to talk. *hug* Read this webpage:

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