The last 2 months have been a blur, and writing something intelligible seemed too far out of reach during this time. My most recent bugaboo/side effect from the drug therapy is simple confusion. Confusion as in, I’m not very articulate in conversations or writing; everything comes out as disjointed thoughts and incomplete sentences. Therefore, in order to “save face” and not sound like a rambling idiot, I decided I wouldn’t write anything more until after I had titrated up to the maximum dosage of all the drugs. I hoped to accomplish this process by the end of the year, and then get back to the blog. But today, I felt a need to purge some of the thoughts in my head. So in response, I decided I would get dressed…and go work out in the garden instead, thinking, “Maybe it will pass.” I ate lunch, and still thoughts flooded in my head about the experiences I had been going through and feelings of the last two months, and “wasn’t that the point of a blog? To record these thoughts and feelings?” “Fine,” I thought, and here I am writing another blog post. If it goes “sideways,” please understand that thinking clearly for me right now, is like washing your hair with a cap on. Huh? See? Nope, not erasing it. That is evidence, my friends, in black in white. This is the ride we are on now, so buckle up and hold on.
My husband has always made fun of me for thinking faster than I speak. I regularly finish my sentences short; because I assume the listeners can fill in the missing information for themselves. It is redundant for me to say what is obvious, right? This tendency is a constant annoyance to my husband, as he is “Captain Obvious” in all he does and “redundant” is his bedfellow. Still, the side effects I have been experiencing recently with sentence completion, blasts my normal complacency issues out of the water. However, it really isn’t complacency at all now. It is more like, “What the hell was I saying?” Or, “What is the fucking word I am looking for?” “FUCK! What?” Yes, the swear words are necessary to the story. They convey the message of how utterly infuriating it is to sound like a 5 year-old. I have 6 years of college with 2 college degrees, and I am now speaking like a kindergartner. It is embarrassing.
Hey, but sit tight, because there has been plenty o’ embarrassment to go around in this shit-show the doctor calls “saving my life.” Let’s talk about the “sequencing issues.” I am not sure if I am making that phrase up in the context of drugs, or if anyone else has had issues with it, but I assure you, that “sequencing issues” are happening. Sequencing is the ability to arrange language, thoughts, information and actions in a certain order to get things done. Without this skill, it’s hard to complete tasks correctly. That is a pretty broad explanation for doing EVERY-fucking-thing in your life! There is not one task you will complete today without sequencing how to complete it. For instance, you wouldn’t put your keys in your lunchbox and take your hairdryer to work with you. You may need all those items, but not in that order. I have days where I cannot figure out the order of any task. Where making dinner seems impossible or takes 3 times as long as it usually does, as I mentally check off each task. It is exhausting. I understand now why I needed to get through this drug acclimation before I set off into the working world again. But then, I also have days where I am perfectly fine. I haven’t figured out the recipe of why I have good and bad days.
I recently entertained some of my family for dinner, who hadn’t been to my home in several years. I was excited to throw a birthday party and fix my famous shrimp & grits meal that I had prepared for many dinner parties before. This meal was a no-brainer, and yet, I managed to completely go blank on how to prepare it. I was standing in my kitchen, listening to the happy chatter around me, and my brain went dark. I couldn’t think of what I needed to do next. I kept going over in my head what was already done and was grasping for the next step. My sisters and mother decided that I needed to sit down, and then more chatting. The chatting felt like a swirling around my head, and even their faces started to distort. It was too much visual and audial information. I couldn’t even make sense of what was being said. I had to actually retreat to my bedroom where I sat alone and cried. Of course, my family consoled me, but the damage was done – I felt like an absolute loser. I failed with this party that I planned and waited for months to complete. I was humiliated that I couldn’t finish. My family finished the meal and served me, including the “birthday girls.” This is when you understand that celebratory events in your life can still be stained by the truth of your illness. I completely felt like my illness bent over and showed its ugly ass that night. I hate it chose that night in particular, but illness doesn’t take a day off.
When the affects of living with an illness is displayed in this way, it does make it harder to hide the rawness and vulnerability you feel; as hiding it feels like a way I can control how this hurts all of those I love. I cried. I am not sure how many years it has been since these family members had seen me cry. But the truth of the matter was – I needed to cry at that moment. I don’t like to cry, as there is so much in life to be happy about: even if illness tries to convince you otherwise. I am not sure why I feel such regret for this bad evening: maybe the shame of being useless and ruining everyone’s time; or deeper still, maybe the shame that I am sick, and cannot take away this suffering that I am putting the rest of them through. The worrying I know that I cause them, and how that weighs on me. I would still be okay with them “pushing me down river.” It would save us all a lot of heartache and money. Ugh…the money spent on medical expenses, the lack of me making money in the workforce. The guilt of that issue alone is an entire post waiting to be written, when I can muster the strength to talk about it without bleeding openly.
So, the big question that I am grappling with is, “Am I healing? Are the meds working?” The answer, with a hard shoulder shrug is, “Dunno.” My cardiologist will not order tests to determine my heart function, and if it has improved, until I have reached my full potential with the drugs. This is totally frustrating for me! I am a numbers girl! If the scale doesn’t go down, I dump the diet. If the grades aren’t A’s, I declare myself a dumbass and put in longer hours studying. In short, I am an all-or-nothing kinda girl. I want to know that the effort I put in has been reciprocated with results. It is a simple way to live. Do something difficult – get rewarded. However, I should have learned in college that this formula doesn’t always pay out – but, ANYHOO, I digress – I just want to see that carrot so I can keep on “running.” I have been told by the cardiologist on my request for numbers, “No can do.” His train of thought is that I will not stick with this horrible drug therapy if I do not see immediate results. He is waiting for big results. In dieting analogy, instead of showing me a 2 pound loss, he wants to show me a 20 pound loss. I get it; and he is probably right. But give me something to keep going on PLEASE!
Regarding my heart function, I do feel like I have better breathing capacity, less chest pain, and just overall easier time completing physical tasks. The only thing I am really suffering from are the side effects of the drugs. It is a double-edged sword where you feel crappy with, or without them. Just depends on which shit-salad you feel like munching on. Now, my husband is a good steward of my cardiologist, and points out on the regular, (each night I bitch about taking the drugs) that no matter if my heart gets better or if I receive a heart transplant, I will still need the drugs. The drugs will be ever present in my life. I will never know another day without them – at least if I want to live. THAT SUCKS! And I can feel the literal weight of those tablets on my shoulders for the rest of my life! I need to get some “battle armor” to help carry the load. Yeah right. That battle armor is called “big girl panties.” As in, “Pull up your big girl panties and get on with it.”
Some like to use the phrase of “going to battle” when it comes to illness. And when you are speaking about grave illnesses such as cancer, “battling cancer” makes complete sense. With cancer in particular, abnormal cells divide uncontrollably and destroy body tissue. In this process, they create tumors. With tumors, you have a “bogeyman” or someone/something to defeat. The slogan, “Fuck Cancer” becomes the battle cry and the fight is on. You can excise the tumor and then kill off the minions that have wandered. Hopefully you catch them all. (Hmmm…a random Pokemon reference. Odd.) With heart failure, there is no “bogeyman.” There is only you, and a part of you that is weak and potentially dying off. You are not angry at your heart. There are no “Fuck Heart” t-shirts to buy or slogans to cry out. No, heart failure is not a battle; it is more like a slow-motion fatal accident wherein you are a passenger and your best friend is driving. You are sad, not mad. Which is unfortunate for me, because I do well with mad, and not so much with sad. The “battle march” really just consists of me walking gingerly alongside my ailing self; stroking her back to health gently, as if you would your own child. It is a “willing” to make live a part of you that is so intrinsic to your own identity. I don’t want a heart transplant – I want MY “best friend.” So, I will keep doing what I need to do in order to save this car from wrecking. I may get confused and make cheesecake for dinner, but “let them eat cake.” Huh??? (I know, it makes no sense, but I am going to go with it.)