It began with a few issues with my heart, some of it I'd been dealing with my entire life. Mitral Valve Prolaps, for example, and progressed to a degree that I now have moderate-severe regurgitation that has to be monitored now every 6 months with cardiac echo, and it was confirmed that the regurgitation has worsened even from a year ago via cardiac catheterization, where it was then still at the moderate level. Now they monitor for any changes that may indicate I will need a new valve. I was also diagnosed with Diastolic Dysfunction, Grade II. Even my Hepatologist said, "You realize that's a form of heart failure, right?" I nodded my head and acknowledged that, yes, I did know.
In 2013, in January I was hospitalized with chest pain, where they discovered that I had mild pulmonary hypertension and that the regurgitation had progressed to the moderate stage.
In 2013, in March I had a TIA (Transient Ischemic Attack, aka Mini Stroke), and then they had no clue it was due to one or all three of the heart arrhythmias I had, something that wouldn't be found until January 2013 after I'd gotten insurance. I knew of one heart rhythm disorder, but I didn't know what it was called. I'd had it since I was a kid, though. It's called SVT or Supraventricular Tachycardia. They also found Atrial Fibrillation (AFib), which they say caused my TIA, and Atrial Flutter, which also could've played a role in the TIA. All of them could play a role, so I was told.
In July 2014 I had Cardiac Catheter Ablation for the arrhythmias and have remained mostly arrhythmia free, with the exception of a few Atrial Runs and PACs.
My symptoms over the last few years were often debilitating, with terrible pain in muscles, joints, chest, issuing and worsening weakness in body, and the feeling of just being 'sick' all of the time. On occasion, and for a short time I would come out of that and feel nearly normal. Then out of the blue it would hit again and take me out at the knees. I didn't have health insurance so didn't run to the doctor for anything unless I was forced. I had no idea at the time what was happening...
I knew something was very wrong, knew that the way I felt wasn't normal at all and more like what maybe a 90 yr old would feel like if they were in bad health. No, seriously. Not kidding about that. But while I was in that other relationship I wasn't believed, was scoffed at for having the gall to mention how bad I felt, etc. I was under enormous stress from that situation, which made things far worse than they really needed to be.
And yes, I was told it was in my head, 'psychosomatic' even, as if anyone in that situation had any degree to make a diagnosis. My symptoms were waved away, dismissed, and ignored. I was ridiculed and made to feel unwanted because I was 'sick' a lot of the time, and yet I wasn't allowed to take the time I needed to take care of myself, to sleep, to eat without anxiety or guilt, to just relax into my life the way others are able.
On that side of the fence in that relationship I was enduring a lot of criticism, and I'm sitting here today wondering how people, anyone, especially someone who claimed to love me.. could do that, to not be one of my advocates, a person who lifts me rather than tears me down.
The finding of AIH recently has opened old wounds, and I'm angry that I was treated like shit because I felt bad so much of the time, told that I wasn't any fun, couldn't keep up, wasn't worthy of his time, attention or love, not even worthy of respect because... I was harshing his mellow, so to speak. How dare I be sick when it wasn't any fun for him? Yeah, it was actually like that.
I'm sad too, though. I'm sad because then I believed the lies, the confessions of love that wavered and didn't really ring true now that I look back. I was left to feel inferior, like a burden because I couldn't put a name to what was wrong with me. To tell you the truth, even had I known it wouldn't have mattered to him at all. He couldn't be with someone who was sick, even if it were temporary. Okay, so I really dodged a bullet on that one, I agree completely. But did it HAVE to be so bad? WHO treats someone like that anyway? Rhetorical question, of course.
The wounds have reopened. I'm sure it's for a reason, because even now I can view this from another perspective. But it's stirring the gears of that damaging machine again, this I can tell you. And I'm pissed off, I am, but I can view that as a positive in that here I am making my way through the stages of grief again, and maybe that this time I'll be mad enough to get right through to the end and stay in the mode of... acceptance.
But I have to tell you what it's like to have this knowledge of my health now while looking back in the recent past at the few who decided that I was either lying, or that it was all in my head. I'm disgusted as I think about that. I'm not impressed with the lack of empathy, how the few decided they were to put on their little doctor hats and play hospital with MY health.
Gas lighting, the dangerous way...
It has occurred to me, even after much discussion about gas lighting, that it was actually being used on me with regards to my own health, my body, and in ways that was absolutely NOT in my best interest. Well, gaslighting is never in anyone's best interest but for the narcissist who uses that tactic, which most of them do.
I was ridiculed and scolded repeatedly, made to doubt, to feel shame about my talking about just how bad I was feeling, physically. I was told and told it was in my head, that it was 'psychosomatic,' that a 'psychic' was consulted who said the same thing, that it was all psychosomatic and in my head. I was told that and told that, and those burnt offerings were tossed upon me at every turn. The result was intense stress and anxiety, self doubt turning to self-hate as I began to believe what I was told.
It was all wrong. He was wrong. Time and time again he was wrong, and those involved in the situation, in MY private life were just wrong. And even now it makes me angry, though I wasn't angry at the time. In fact, I couldn't even feel anger and hadn't for some time; another issue my therapist was trying to help me with.
They were all so very wrong.
Today as I feel the AIH symptoms ebbing, as I feel the side effects of the serious medications to suppress my immune system come on board, as I go for weekly blood draws to assess what the medications are doing to my body, as I look at the future and tell myself this is going to totally stop my liver from developing cirrhosis, as I look at how my life is radically different, how my future is uncertain, and look back at how bad I was made to feel over things I couldn't control... I'm both angry and sad. And the little voice in my head just says.. It was real. It IS real.
I wonder how differently things would have been for me had I not had the additional stress, anxiety, and resulting depression? How different would things be right now with my health had I not been put under SO MUCH unnecessary scrutiny, judgement, and ridicule. Would the AIH have been in remission and stayed? Would it have come back as badly as it had? Would I have had that TIA in less than a week after the big fight with my ex?
Being treated better wouldn't have cured the AIH, and it may have just prolonged the flare that would eventually have brought about a diagnosis. But stress and anxiety DOES make AI disease flare, so it's best to be avoided when possible. It would've been nice to have had that person on my side, to have been comforting rather than hateful, rather than judging me for being sick in the first place, maybe to have had compassion, enough that inspired concern rather than ire. Maybe the extraordinary stress from the fight in April wouldn't have happened had there not been this need in him to hurt me repeatedly... I don't know.
What I do know is that I look back and feel disgust for a few people who decided that they knew my body, my health better than I did.
I'll get over the anger I feel right now, the disappointment, the confusion that seeps in through the cracks despite my best effort...
Today is just not that day, I guess.
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