I’ve been mainly absent lately. In life. On social media. Kind of silent, not really there, which kind of explains most days.
To say it’s been a hard year would be such a gross understatement it instantly makes me gag.
Personally, I’ve been dealt a few blows and tried to salvage relationships that mean a lot to me, had to let others go, and see others change in such ways I am still trying to find footing.
Professionally, I’ve stalled, struggling to write anything due to physical and emotional clutter (stress is a huge factor, but I have also been diagnosed with two things that are affecting me cognitively).
Medically, it has been the worst year since 2009-2010. I lost nearly twenty pounds and was violently ill only to find over a dozen ulcers in my stomach (I had never had a single ulcer before). My PTSD was triggered and went off the rails after doing so well for over six years, which also caused a deep depression. I’ve been having a bunch of absence seizures (confirmed via EEG) and now I’ve been dealt another health blow – my heart.
I’m not sure when I first noticed symptoms because it happened when I was in a bright spot in my life. Stress really affects what’s going on, so when I was dealing with something hard or dealt a personal blow where I had to regroup I noticed I was physically different.
That was the first week of April. I would get stressed and suddenly feel faint, dizzy and out of breath. An avid daily walker, I couldn’t go more than a block before becoming winded. If I did – my chest would hurt, forcing me to stop wherever I was.
In May it was this, but more pronounced. Instead of times when I was upset or active, it was a regular thing, and by June it became daily. I didn’t try to walk anymore. And cognitively I was different, even if I didn’t realize it. I always felt ran down, exhausted, and could not focus or concentrate. I was spacey, and I am not a spacey person.
My husband didn’t say anything until July 5. He had noticed things for a few weeks, but it didn’t become obvious until our trip to Nebraska over July 4.
“Something is going on,” he confronted me directly.
“Yeah,” I said, “But I see Wolfel in a few weeks, and it’s not worth trying to get in earlier.”
“So it’s your heart?” He asked.
I nodded. I couldn’t be certain until I had my Echo and EKG but I was sure it was. I have had a few heart surgeries to replace my aortic valve and my current donor valve was supposed to give out five years ago. I was doing so well, it was about time that became a thing.
But my Echo was fine. I mean sure it showed I was starting that downward journey, but I was just beginning it and that alone should not cause the symptoms I was having. We went to the appointment expecting to hear one thing, but weren’t prepared for: “Everything looks good!”
I admitted to doctor what was going on. I didn’t before hearing his take on my Echo, because I wanted to see his unbiased test-only opinion. I was always going to tell him what was going on, but timing is everything. I don’t want to react too strongly if I can get more time out of my valve, but I also don’t want to play a dangerous game of chicken, and it is a very fine line.
Based on this he ordered labs and an EKG at my request. Labs came first and it was a few tubes but still no more than 45cc of blood total. I say this because something happened that has never happened before. I suddenly went into arrest and passed out. My husband said he has never been so scared, I had no color, my lips were blue and I was unresponsive for several minutes before regaining consciousness. I had to stay in the hospital for several hours after, leaving by wheelchair because I could not walk without putting all of my weight on someone.
My EKG which was done after this incident showed a lot of bothersome things but my doctor wrote it off as “poor data collection” because I had just passed out. But that was wrong.
I have a bone marrow disorder and have to get regular phlebotomies (bloodletting) and infusions for it. They take no less than 475cc each time. I can do this first thing in the morning, dehydrated and still it doesn’t faze me. At worst, I feel a little nauseated. I have never passed out – not even my first time. The EKG’s results weren’t because I passed out. I passed out because of what the EKG had to say. (I had not had a recent phlebotomy and my labs confirmed I was not anemic, nothing to explain why I passed out.)
So several tests and more EKGs later and it shows the same things. I have Left Bundle Branch Block (LBBB) and one or more arrhythmias (they have detected three types, but need to do a heart cath to confirm what I actually have definitively). Less than 1% of people with LBBB are anywhere near my age (33). Many people with LBBB don’t have symptoms and it can go on untreated even when symptoms are present. Unless of course, you have a tendency to lose consciousness (I have multiple times since that incident) or fall (same) or have your heartrate spike to dangerous levels indicative of being pre-heart attack (four times so far) – hospitalized twice.
Now I have to wear a 24/7 heart monitor for thirty days, but I’m still worried about my cardiologist taking this seriously (I have the heart monitor only because of my most recent ER trip).
I am trying to keep my stress in check, but that’s a lot harder than most people realize. A) I have PTSD, so my normal is already stressed-the-fuck-out – that is my baseline. But also B) a few major stressors are things I have no control over, but are external sources I can only hope cease or get better but because it isn’t me or coming from me, I can’t control it, and I can’t cut it from my life.
A typical day is my heart rate in the mid-forties to mid-fifties, which if not for symptoms would just show that I’m fit. (The average person’s heartrate should be between 60-100.) That’s low. I’ll wake up, more tired than I went to bed and feeling like I can’t breathe. My vision will be blurry for thirty minutes – at least and it hurts to focus my eyes. I’m dizzy and just feel generally crappy. I will not be able to do much. Even minimal movement will make me feel winded and sick. Of course, I de-stress by going on walks or cleaning the house – doing something. So all of my coping methods are basically defunct. I will have lost time. I will forget things, like eating or if I fed the cat or think I did something when I didn’t or do something twice because I forgot I did. It’s harder to follow conversations so they become longer. I can’t write, which breaks me a little.
The days when I go to the hospital is when something major happens. I’m pretty adept at handling stress (PTSD is good for something I guess) but when an external force throws a bomb my way, I’m still human. I can only cope/manage 90% of stuff – the other 10% I just need help in not having to deal with it. In under a minute (because I have a digital monitor since this became an issue) will go from the mid-forties to 125-150 in under a minute. The chest pain feels like a huge barbell slugging you in the chest and then staying there. You can’t breathe. The pain is both sharp and a dull ache. Every breath becomes harder but because you know better you don’t panic, but it makes little difference. Then you vomit. Because you can’t breathe and the pain is so intense – I don’t know. Apparently, it’s a thing that happens before you have a heart attack. I would never have known if it hadn’t happened to me – a few times in the past month.
For the record, the whole pre-heart attack thing is just kind of “eh”. I’ve done worse, but it is something I don’t want to go through again. It doesn’t scare me because there are other things to focus on, but I understand how serious it is and what it means in the grand scheme of things.
Treatment is limited for this condition. Certain medications are possible if it’s only issues with a slow heart rate, but not if it also jumps (most people have one or the other apparently, I have both because I really like to be special). We want medication because the only other option is a pacemaker. But pacemakers and artificial/donor valves do not mix well. And I kind of need my aortic valve to live, but I also need to not have a heart attack or sudden cardiac death (which I’m at a 40% risk or whatever because of everything currently going on, if I understood the ER doc right, but remember I’m not tracking super well, and I was by myself for that visit).
I don’t smoke or do drugs, I drink less than once every three months so all of those things aren’t relevant. I do love chocolate and coffee but it’s my one vice and while I can/will cut back and be mindful, I am not giving it up – seriously, can’t/won’t. That only leaves stress and sleep. Of course, my stress makes me not sleep so they are kind of the same thing, and on that front I am really, really trying. But I can’t do it myself. I need help from others when it comes to the external stuff, and I hate that.
My mother did the whole pity thing. She’d actually say, “Don’t upset me, my heart can’t take it” and clutch her chest. Her heart was fine of course, this was just to get unwarranted sympathy and attention. So to actually be like, “I can’t get stressed because I will reenact a scene from The Exorcist and there will be vomit everywhere before I pass out,” I hate that. It makes me feel like I’m being like her, even though it’s actually happening and stress is the first thing listed as making this condition worse. I hate being like, “Please don’t upset me. Please don’t cause my anxiety. Please help me. Please be calm so that I can be calm. Please do the work and don’t put it on me.” I feel it’s divisive, manipulative and unfair, even if it’s actually totally legit. (And maybe this is how it should be if I wasn’t sick, in some of these situations, but it’s still… I don’t like it.)
I have to figure something out, because I really can’t get a pacemaker. I mean, if I need one then I need one, but it will seriously impact my health and life in really bad ways because of my artificial valve. I’m not even getting into life expectancy. I also can’t keep doing this. I can’t not be able to walk/do things/write/work because I’m not all there. Another thing to consider, the strain of my heartrate has impacted my kidneys, making my creatinine go up 0.3 knocking me into a totally new stage of kidney disease. And my kidneys can’t go again too.
Isn’t it just like me to have dueling heart problems whose “fixes” get in the way of each other. I can’t just do something to be healthy, because like most things in my life it’s a balancing act, a tight rope walk and on one side is the key to living, while the other is permanent death.
But I’m fine. I mean, I’m obviously not, but with this I am. It’s just one more thing. It’s what I do.
I just have to hope that the other things, the 10% of stress I can’t handle, goes away. I have to hope that all other things get better because I can only handle so much – you know?
I’m strong. I’m fierce. I’m a survivor. But I need all my energy to do this. I need things to be easier. I need things to stop, or slow down. I need help. I need to be selfish and unfair because I’m trying too hard to be okay. I’ve been absent, a flaky friend, MIA in most things, I need to keep that up too. Because I need to be okay more than I need those things, but I need those things to still be there once I am okay.
I’m rambling but this is the condition of my new “cognitive cloud funk”. I’m tired. I’m sick. I’m sick of being tired and tired of feeling sick. I’m over this. But I’m okay. I’ll keep showing my fiercest face, I won’t blink, waver. I won’t complain and I’ll try to not ask for anything beyond what I absolutely need. I won’t be so hard on myself, and I’ll downplay anything I’m feeling. I won’t lie that it’s not there, but I can say I feel sick instead of saying, I feel like I’m hanging on by a fraying physical thread and about to crash/pass out/lose it. Because no one needs to know the degree, just what is or is not.
I’ll be smart. I’ll get through. I’ll be okay…
But if I’m being honest, sometimes I really wish I didn’t always have to be.