Oh, what a rollercoaster of emotion the last couple of weeks have been. It’s also a little freaky, because I had a premonition in 2020 that I was going to die this year. So, um, yeah the possibility didn’t come as a complete shock in an odd sort of way. BUT, I’m not going down without a fight, and I really hope to still be writing rambling blog entries to the void at 3 a.m. ten years from now. 😉 And, the truth is, there are people out there who have lived a good long time with PH, who have had much more severe problems than I do. So even though some stats are freakin’ scary (2.8 year average life span if PH goes untreated…), the truth is that mine IS going to be treated, and that I’m probably going to be OK. I’m blessed with a supportive mom and step-dad, possibly the world’s best boss, and good insurance. If this had happened while I was unemployed, this could have been a lot more scary.
Still, life isn’t a walk in the park for me right now. I have regular PTSD nightmares that wake me up in the night, sometimes resulting in me wetting the bed (or chair, I sleep in a recliner because of my back issues). The medication that helps make the nightmares go away, Prazosin, messes with my vision to the point I can’t take it if I want to be able to use a computer. So, I get to choose between sleep or seeing, because it seems Prazosin is the only magic medication for PTSD nightmares. I’m up right now because of one a few hours ago. These things aren’t simple bad dreams, either, they suck on a whole other level. Back in December I was even having waking flashbacks – those have thankfully seemed to have stopped.
All of this is overshadowed by the fact that breathing isn’t always the easiest thing for me. When I was a little sick recently, cold + asthma + what I now know is PH made it so I could be gasping for breath just sitting up in my recliner. Of course Saoirse had to try to work during all this, but it seems my work-mates have heard me on zoom calls where I couldn’t use complete sentences because of wheezing and breathing problems…. so they weren’t shocked by me missing work recently. It’s thankfully not normally THAT bad, but it is bad enough that my biggest dread of the coming week of medical tests isn’t the tests themselves, but of getting in and out of the doctor’s office.
Why do I dread it so much? Because all the tests are in big buildings downtown I’m not familiar with. When I go to my normal doctors in Canyon Park, I already have mapped in my head all the places I can sit down to catch my breath. This coming week, I’m going to have to take my walker to the tests just so I have an emergency place to sit down. I won’t have one of those nice mental maps. I have a walker because of my back issues, but I hate using it. I don’t like looking disabled. Showing my weakness is hard for me. Sure, I’m revealing a lot on this blog, but it doesn’t feel that different from the private journaling I’ve done for years. And, with my readership, it really isn’t. 😉
But ALL that said, and you know what I feel the most shitty about tonight? That my ex-roommate is having a hard time finding a good place to call home since I asked her to move out in December. I think she’s been in 3 or 4 living situations already. I desperately want to reach out and save her, but the reality is, I just freakin’ can’t right now. I’m too sick mentally and physically, and I have to be selfish and focus on me. As much as I want to step in and tell her its all OK, she can come back, I know that’s the wrong thing for my health and sanity right now. And that makes me feel really useless and low. I knew this train wreck was coming in my life, if not the exact diagnosis, and I tried to set her up with a good landing spot. She’s not neurotypical though, and finding people that will accept her seems to be more of a challenge than I thought it would be. That sucks. I firmly believe that if she had the right environment, the right community, the right doctors, and quite possibly the right medication, she’d thrive… but I can’t give her any of that right now. 🙁 Star, if you read this, I’m sorry.
I tend to have an unhealthy relationship with my roommates. I don’t need them financially, but they can help around the house and keep me company. They can be a great gift. I always feel guilty when it doesn’t work out. I’m built to try to keep the home life as peaceful as possible, which means I tend to avoid conflict at almost all costs. Instead, I let things eat away at me for years, and eventually I just kind of break it off with people when I’ve reached my limit. With one exception, I’ve always tried to make sure they were set up someplace else. I care about them. Heck, I still care about every roommate I’ve ever had. I just can’t be involved in everyone’s drama… I have enough of my own. In fact, I’m thinking of opening a movie studio for all the current drama. I could make films. Or write scripts…. or long rambling blog entries no one will read. Wait, I already do that.
And on that note, while Prazosin may make it hard for me to C#, and while I have my challenges, I’m not ready to lay down and die, and B flat. I know A better day will come. G I hope it’s soon. Oh, incidentally, one of the possible medical treatments for pulmonary hypertension is Viagra. Good for ED and the lungs. F yeah. And now to see if I can go rest…
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