New Year 2013
It’s been a while since I’ve written. It’s a new year now, and so it seems like a good time to get up and move again (proverbially) in spite of the present challenges. I’m going to make an effort to keep the blog more active again.
Right now I just want to say that last year is not an experience I would care to repeat. I commented on my Facebook page that I’m not sure whether to threaeten to grab 2013 by trhe throat and drag it down a better road, or talk nice to it and pat it on the head. One way or another however, I expect more positive changes this year – and I will to find ways to make that happen for me. Somewhere in between the days that require medication to get out of bed and function, there are the days that can be seized and relished. I was doing that some before I went down the path of two major surgeries, loss of household income, loss of health insurance, and various other blows. It’s taken me some time to recover balance, but I’m getting there. I lost my remission. I hate to say that anywhere, but I did. I flared. Oh well. I’ll get it back.
I have to say something encouraging though. I have the perfect news to share in the light of that intent. If you’ve followed the saga of my freakish discovery of an idiopathic (means “We have no idea why you have this”) heart condition, then you know just how challenged I have been over the last year. I scrambled to get in my annual cardiac stress test before the insurance coverage ended, and it was a blessing. I already knew the left ventricular hypertrophy was stable (it had to be for the shoulder surgeries to happen), but I was not given much hope for improvement any time soon, if ever. There was a small chance of it over time. With an ejection fraction of 45% (which is 10% below normal), I needed two medications to lower my blood pressure and regulate my heart rate. It needed to be slower and better controlled because of palpitations. As of my recent test, my EF is back to 55% – NORMAL – and goes up to 65% during exercise as it should. The Dr indicated that day that he believed it might be, but I wanted to wait until the follow-up visit for verification before blurting about it. I am stuck with medications for maintenance. I think however I can live with that. The alternatives are not appealing.
Unfortunately it also seems that I have autonomic dysfunction. Some type of neurocardiogenic issue, possibly POTS, possibly something else related. Let’s call it orthostatic intolerance to be totally accurate, and I’ll add that I only have “pre-syncope”. What all that means is when I stand up my autonomic system doesn’t regulate like it should and my blood pressure drops instead of compensating for the change in position. My brain isn’t getting enough oxygen and I get lightheaded. Some people pass out (syncope) but mine isn’t that severe. I’ll be grateful for that and hope it stays that way. It is apparently responsible for some of my fatigue and other symptoms like electrolyte crashes and sudden cold sweats. I mention all of this for the same reason I share any of my health concerns. Someone else out there reading may say HEY… that sounds like me! Women’s heart disease is a serious matter and I am all about education on the subject. I wish I had known what I know now MUCH sooner! So I have to be diligent about staying hydrated, and it turns out I have been right all these years when I told Drs that I cannot reduce my salt intake without getting sick. They always insisted I should because of the hypertension. The problem with that theory is that 1. Not everyone’s hypertension is affected by salt, and 2. I have distinct and oppositional conditions that make that a bad proposition. They also assume that all of their patients eat the same. I am not consuming a typical American diet of prepackaged, prepared, processed meals. That means the only salt I get is what naturally occurs in the fresh food as it grows or what I shake on it myself. If I take that away I feel like death warmed over. I was right. I’m gonna say it. I TOLD THEM SO.
I will also say right here that I have the best cardiologist in the world. I love him to pieces and I hope he doesn’t retire until I don’t need him anymore, or maybe he has some fabulous protégé’ to replace himself with. I wouldn’t trade him for gold. He’s conservative, invested in his patients, highly intelligent, and absolutely sensitive to our well-being and how every decision affects our lives. He didn’t want to change my medications other than to try reducing one of them because I’m doing so well – with caution. Basically he said I’ve lived with this other thing a long time and adding a medication would fight with the present treatment. He said I know how to manage it and there’s almost no chance of it worsening. I’m good with that.
This sums up 2012’s events in a nutshell: Cardiomyopathy diagnosis, two major surgeries, SLE remission, lost my insurance, lost my remission, got great news about my heart, and ended the year not sure where to go from here because of all my Drs that will work with me on cost, I can‘t afford to see my rheumatologist until I get insurance again. That should make you laugh, and I hope it does. I’m smirking right now because what else can you do? I often ponder the irony that I constantly live one of my favorite literary lines… “It was the best of times, it was the worst of times”, and I have been doing so for a very large portion of my 45 years. I believe I am in the throes of an extreme example at present.
Now you know the meaning of the ancient curse, “May you live in interesting times.” (That’s not supposed to be a good thing.) Would I however wish for boredom? Never. In the midst of conquering my fear over what this diagnosis meant for me, I created new avenues to bring awareness to other women about heart health. Life is work, even when you don’t work. Purpose is what makes us real humans. If you don’t have one, find one.. great or small. You never know what some small thing may mean to others.
Posted on January 2, 2013, in General Blather, I Am That Wolf and tagged 2013, Cardiomyopathy, Fibromyalgia, Heart Disease, Lupus, LVH, New Year, Orthostatic Intolerance, Postural Hypotension, POTS, purpose, SLE, surgery. Bookmark the permalink. Leave a comment.