I started this blog today after a mini-meltdown. I have spent a few frustrating weeks on medical leave after I had to abruptly stop working due to a lung issue. I am not cleared to go back to work until after my lung transplant evaluation (if then). While I was researching in a way to mentally prepare for what was to come, I was frustrated about how few resources there are for single (unmarried) people needing transplant. The majority of resources/stories I found were encouraging but most if not all, involved married couples. A few of them I did find related to single people, were outside of the U.S. which obviously makes the decisions & process different as well.
I learn from all of it but decided to put this to blog in the hopes that it helps someone else, but then also to make people more aware of my illnesses, the transplant process, but also how one person (with advocacy, insurance, and healthcare backgrounds) can struggle sometimes to navigate the healthcare system. I probably will too (in due course), also outline the struggles of using the social system (medicaid, social security disability, and other government resources) as this all plays out. This is not a walk in the park for people in the know either, though people may wonder if I have it easier because of my backgrounds. I can tell you that right now honestly that sometimes I feel as lost as someone who has no knowledge or background.
I know of a handful of people who were transplanted (who are not married) but who have family support. My journey is different too in that my family (as much as they support me) lives far away (about 1500 miles away) so they are not here on a daily basis to see what I have to do to deal with my illnesses. Sometimes I struggle as to how much to tell anyone close to me about this for a few reasons but mainly trying to manage how I come to terms with it myself first, much less explain it to others without freaking them out or putting worries and fears in their heads.
I’m fortunate to have two friends who are married but who also consider me family to help me with this journey. They’ve been with me for 15 years, 3 years before my decline was even on the map. Yet it seems the closer I get to certain things, the harder it is to talk about, even with them. I have become more direct than in the past but sometimes it doesn’t make it any easier to discuss difficult subjects. My issue with it is usually because I don’t want to seem as if I’m being a burden, complaining, wallowing, or being selfish – all things I am capable of time to time when I get frustrated and depressed. Part of me just feels like I don’t even want to have the conversation period, but I know I have to. Eventually it comes out, and probably a lot more messy than if I would just “suck it up” and talk about it. Yet that’s always easier to say in hindsight than when you’re sitting with it.
Yet, they are there for me, even when I drive them nuts. I am very lucky in that regard. One of them rightfully suggested that maybe I want to put some of this to a blog format to help others and to vent about things important to me without using a social media forum like Facebook instead (which I find a huge time suck sometimes and can actually get me in a more negative mode) or turning my frustrations inward or outward. I agree with that, so here I start, now is as good of a time as any, I guess.
I struggled for a long time with considering writing a blog. It’s not like I hadn’t thought of this before, I just never did it. I do enjoy writing but had no idea what to write about or if it would come across a disjointed mess if I wrote on a different subject each day. But the more I think about it, who cares? Furthermore, I wasn’t sure that anyone would care to read what I was putting out there. Yet, I feel compelled in this instance to say something about my journey and while it may focus on different subjects that tied into this overarching subject, I do want to paint an accurate portrait of what goes through someone’s mind when they come to the juncture I have. Good, bad, or otherwise. People can read or not read, their choice like anything else in life. But if it helps someone else, well at least some good can come out of a downright sucky situation.
Maybe I can put all of these past, present, and future frustrations to constructive use here in this blog, at least that’s what I’m hoping for.