Well, since I’m on this forced rest time and unable to resume my normal activities or exercise, I have more time to post here. I’ve actually had this blog title in my drafts for the last two months. When I first pondered the subject, it was far more of a question that I really didn’t have any answers to at the time.

I’ve always been good in difficult times. I’m the type of person that can fairly easily focus and rise to whatever occasion. I’m the one people come to for advice or mediation. I think I find enjoyment in being able to rally in the midst of difficult situations because I also relish more instant gratification type situations. I can look at something, figure out how to deal with it, see it to its logical conclusion, and then move on satisfied.

Therein lies my problem here. When all this started, I went into that crisis mode. I made the doctors visits; I did what I was told. I researched and researched and researched. I set up my support system. I took my meds. I requested additional things that for whatever reason no one offered me. I solved problems. But there is no conclusion to this. This is forever. This won’t end. And being in a constant state of crisis management/problem solving is exhausting and not a real life.

Honestly, I’m tired of this disease already, and I’ve only been dealing with it for five months. I’m tired of talking about it. I’m tired of reading about it. I’m tired of my whole, damn life revolving around it. Yet, I have to still tell people (I am out in public with a cannula. I am only 38. I do have some explaining to do). I still need to research things. I don’t know everything, and there are always new things. And much of my life does, in many ways, have to continue to revolve around it (like what time I wake up for meds, when I can and can’t eat, doctors appointments, always checking to make sure I have enough oxygen to do whatever it is I want to do, etc.).

I thought when I came up with this blog subject, I would be asking for help on the subject, but I think I am now figuring it out. I’ve dramatically decreased the number and type of doctors and disease-related activities I do during a week. I’m basically down to my weekly chiro appointment (which I thoroughly enjoy), and the rest are my periodic specialist appointments and labs and as-needed doctors. I think the fact that on a Thursday I had a right/left heart cath and the next night I hosted my first Monthly Movie Night and, two days later (today), I continued with the tapering of Prednisone (down to 40 mgs!!!). And even though the experience is less than stellar on taper days, in between resting, hot showers, hot tea etc…I’ve played with my kids, snuggled with my baby, eaten a fabulous dinner made by my husband, talked with a new friend from the neighborhood and generally lived life in between all the other crap.

When all this started, my main focus was how to have all these diagnoses and survive. And obviously, survival is the most important thing, but it isn’t the only thing that is important. Call me greedy, but mere survival isn’t enough…I want to LIVE, and my life has tended to have a pretty high standard for what living a great life means. Thankfully, aside from this overbearing, time-consuming disease, my life is perfection. I just need to remember—everyday—to spend more time with the perfect parts than the imperfect parts.

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