P is for Priorities


a-to-z-letters-pI am way behind on the A-Z blog challenge, in part because of my word for the next letter, P. Priorities. There are just things that have come first, from an entire day lost in front of the television because of the Boston Marathon bombings, then another day reading and watching the stuff on the explosion in West. Then my bestie has been sick and I’ve not been feeling well, and I’m behind on some stuff I’ve been needing and wanting to do… and it just comes down to this: I have had other things that have taken priority over finishing this challenge.

I do, however, intend to finish it, even if I’m slow getting over the finish line.


Since this is my blog about medical stuff for me, I should also mention something about that. We’ve been trying to eat healthier, hoping to get rid of anything processed in our diets. My son is having a hard time with this, because he pretty much only eats meat and potatoes, and the only thing green he’ll eat is green beans, and then only rarely. So we’ve been trying to eat healthier, and bring the boy in line with it too.

To do that, I got a juicer. We’re not doing anything as radical as a major juice fast, but we are juicing veggies, mostly, but also some fruit. We’re using the pulp from the juicer for an all-natural thickening agent in soups, sauces, etc. Better for you than flour/wheat (processed and wheat is often GMO and bad for you anyway), and the pulp from the veggies gives you micronutrition in the sauces and stuff too, and it will, believe it or not, thicken your sauce of soup better than corn starch or flour. It seriously works great, and it’s much, much healthier–but more than that, my son doesn’t even realize that there are veggies in it.

Then, we drink the juice. I mean, I’ve made a few different ones now, and most of them aren’t bad. Granted, I like the fruit juices much better than the veggie juices, but a combination of them works beautifully. Think V8 Splash, but without the processed fake bad for you stuff, like artificial colors, artificial flavors, preservatives, etc. The downside to juicing is the color–everything ends up being a murkey green or brown, but if you can get past that, man, some of those drinks we’ve made are delicious. Mixing some grape juice–which is super sweet all by itself–with some veggies, all I can taste if the grape juice, but the veggies make it not so super sweet. I even made a spicy tomato, cucumber, carrot, cilantro, jalapeno pepper, kale, lemon and lime juice drink, with a dash of chile power and paprika, a little bit of sea salt, and a stalk of celery–yum!

So I’m making my health a priority. That means, sometimes, I can’t be on the computer as much as I once was. I have to be up more, moving around more, being more active in my life, and taking a more active role in my health.


Which brings me to another problem I have with doctors: They’re priorities and my priorities are often different things. For example, they want to keep me alive for as long as possible, and I want to enjoy my life while I’m alive now–their priority is longevity; my priority is a balance of longevity and quality. This puts us at odds sometimes. For example, the docs want me off the prednisone (and I do too, in a way) but the prednisone makes me feel better–a lot better, sometimes. So they want me off the pred so I will live longer. They say it will cut my life short. I laugh. So, it’ll take two years off the 40-50 years I would have lived if I didn’t have CTEPH that’s likely to kill me in 6 years or so? But will it kill me in the next 6-10 years? No? Then let me feel better in the time I do have left, yanno?

There’s also some other issues with priorities, like the pain issue I’m experiencing is a priority to me, but since the docs can’t find a ‘reason’ for it, it’s not to them. They tell me to take a couple of Tylenol (which do nothing for me and I can’t take ibuprofen because of the coumadin), and that’s that. But the pain is a significant cause of reduction of quality of life for me. So it’s a priority to me, while pesky things, like, oh, I don’t know, my heart function and lung function, are more important to them.

Lastly, I have to learn to pick my battles, because I have SO MUCH wrong with me, it’s overwhelming to the docs, and to me sometimes too. When I first moved to this multi-specialty clinic, I was an ‘acute’ patient, so they would only deal with the acute issues. Now that I’m considered ‘stable’, we can slowly work on one issue at a time, and try to take care of some of the things that are less of a priority. What sucks is, if I weren’t sick with the ‘important stuff’, some of these issues are things my docs would have jumped on fixing.

For example, I have a shoulder that causes me a considerable amount of pain. If I were otherwise healthy, this shoulder pain would have been a priority to the docs. But because I’m sick with all this other stuff, they don’t really care about my shoulder. It sucks, because that leaves me in pain. If they could help with the pain, I could tolerate them putting it off as not a priority, but they don’t help with the pain–so it becomes a priority to me.

So a big part of seeking medical treatment, and if you take any advice from me, take this one: Prioritize your conditions. The doc can’t help you with everything at once, and often, when you treat the most important things first, the things that are less important will go away, or improve. Sometimes, the little pesty things indicate a bigger problem, though, so don’t ignore them completely. You be assertive and tell your doc what is affecting your quality of life most, and why it’s doing so, and let the doc know that it’s a priority. Sure, the doc might still think that heartburn is worrisome ’cause it might be a heart disease or the warning signs of a heart attack, while you know that chugging some milk and eating less spicy foods makes it go away and what’s really bothering you are these blinding headaches or something.

So the point is prioritize things, but be open to listening to the docs talk about why some things could be more important. I was wanting to lose weight, desperately wanting to lose weight, because when I got so sick and was put on the prednisone, it seemed my weight skyrocketed, fast, and I was feeling really unattractive and sluggish because of it. I talked to my docs about this and wanted so badly to get my weight down, wanted to be able to exercise (which is hard to do when you literally can’t breathe and wear oxygen, but it’s not impossible), but my docs kept telling me that my weight wasn’t a priority to them. Well, it was to me!

At my last doc visit, the doc told me that he could tell I’d lost weight, and he was glad for that. We talked some about losing weight and he explained how a good portion of my weight gain was from the fluid retention and overload caused by the congestive heart failure and the pulmonary hypertension (pulmonary and abdominal edema, and lower extremity edema). I had literally–ready for this?–literally 100 pounds of water weight on me. They have been working with me this past year to use the lasix and fluid restriction to get the fluid down, and I’m already down about 50 pounds. He was pleased to see–he said based on the pressure in my legs and such, he thinks I could lose as much as another 75 pounds in water weight.

Between that and significantly lowering my prednisone–all for other health reasons, other priorities–it seems the weight is taking care of itself, as long as I keep eating healthy and doing what I’m doing. If I had tried to focus on the weight, my priority but not theirs, I would likely be a lot sicker and that wouldn’t help me lose weight anyway.

So yeah, sometimes you have to give a little. I’ve given a lot and lost a lot, but I’m gaining some of it back too. I’m learning as I work with the docs, when we have different priorities, all I have to do is tell them why my issue is important to me, and ask them if they have a reason why it’s not important to them. Then when they have a priority, I listen to why it’s important to them… and we work together–as a team (which is what patients and docs should be)–to ensure the best health possible.

So there ya have it… a priorities post for the letter P, much longer than I anticipated, but done! Hopefully I can be less verbose and catch up on the challenge in the next few days!

Love and stuff,




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3 Responses to “P is for Priorities”

  1. Jolie du Pre says:

    We only have 24 hours in the day, and part of that is sleeping. So yes, setting priorities is important. Happy to see you purchased a juicer. I use mine a lot. For example, I’d rather juice a grapefruit then eat one whole. ~~ I wish you good luck with everything.

  2. Amanda says:

    It definitely is a balancing act with the doctors priorities and your own, and our expectations is that they can fix things, it is great that you are juicing, so much delicous combinations I do like the veggie ones mixed with fruit, haven’t found an alternative colour, but at least my son likes it and gets his combination of vegetables:)

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