This week has ended with a small milestone in my heart failure journey: I have completed titration of one drug to the recommended dosage! I am pretty happy to get to the end point of it, and I am sure my cardiologist will be too. I am also sure he will reward me on my next visit by adding an additional drug, and starting at the lowest dosage and increasing weekly again. In fact, he has told me such…yay. I guess I should have a mini-celebration for this milestone, and will, as soon as my head stops spinning! It wasn’t easy. It was also harder than I anticipated to not share my daily struggles on social postings. But, I have been busy – titrating. Sounds more interesting than it is! Hahahaha!
The drug I have conquered is a beta-blocker. Many take beta-blockers with no issues; many do, but not me. I have taken other brands of beta-blockers before now and always stopped because of the horrible side effects. As written in a previous post, I no longer have the luxury to simply choose not to take them. I have been told that the drugs will be the only hope to save my life: that, and/or a heart transplant. And, of course, you cannot receive a heart transplant unless you tolerate the drugs. Any way you look at it, I have to accept the drugs. So I have concentrated my full effort on doing so. The road has been bumpy but I have made it through the first test.
And by bumpy, I mean everything I look at has bumps – literal bumps. The “visual disturbances” have been the absolute worse side effect! I look at objects and they are not the right shapes: dinner plates are oval and straight lines are wavy. Many times I feel like I am looking through an old glass-plate window pane. And then there is the really strange stuff! I was out in the garden and placed a brick on top of my raised bed, which is 3’ off the ground. I went to take a break, and when I looked back at the brick it was floating like a plastic bag in the wind. I couldn’t believe what I was seeing! I had to go check! Indeed, the brick could not float upon closer inspection! I also was reading emails and received one with tiger cubs on it from a local zoo. As I was reading the email, I swore that the tiger cub was moving his mouth in the photo and I thought it was a video with the cub speaking to me! Now, I am not sure if these were “visual disturbances” or “hallucinations” but this beta-blocker purports to have both as side effects! It is not as fun as it sounds.
I have a laundry list of my other side effects. For those of you following along because you are wondering what you may experience, they included dizziness every single day; nausea on most days; weight gain despite moving more and eating less (I will spare you my absolute disdain on this one); hair loss; scatterbrain in such a way that I am back to writing many lists to keep me on track; joint pain in my hands, wrists, knees, ankles and most painfully, my jaw; nightmares or just really long and bizarre dreams that keep me semi-awake all night (drug dreams); edema in legs and abdomen; short-tempered; ocular migraines; waking with headaches (although this could be attributed to my moderate sleep apnea); and tired pretty much all the time. I try very hard every day to keep busy and not take naps. I am working through it. Interestingly enough, I find that on days I am busier, I am less apt to notice the side effects – or I am just too busy to dwell on them. I have puked in the yard while still continuing to garden. This is my new normal and I won’t let it rob me of doing the things I love. I am also hopeful that the side effects will eventually level off. I won’t even consider that I may feel like this, the rest of my life. The good news is that my blood pressure and heart rate are down. The specialist says that isn’t enough to just bring down these numbers to control the heart failure, but it does take us in the right direction.
In fact, I am so hopeful (delusional?) that I will be in “controlled heart failure” soon, and able to get back to work, that I refuse to give up my “time off” to sickness! I know that sounds weird, and it kinda is, but I am using this time “titrating” and being sick to doing things I have always wanted to do – like grow food. It makes me happy, and I go outside and soak up the sunshine and push my, now always dirty, fingernails into the black earth. I find that the saying is true, “To plant a garden means to believe in tomorrow.” So I plant the tiny seedlings and will them to flourish, grow…live. This is healing to me, and allows me to still feel useful.
I know I have written many times on this blog about the importance, to me anyway, of staying useful. It is something that I believe strongly about. I hope, no matter how sick I become, to never play the victim. It is something that proves to be difficult to evade. I say this because we live in a society that we need to “prove” our sickness. And when being sick becomes your identity and that sickness dominates your life, many will feel the need to prove their victimhood; or may be put in the place of having to prove it. The specialists want to make sure that you are worthy of their time; if you claim disability (which I do not) you have to prove the severity of sickness to receive benefits; with insurance companies you need to be placed into a “tier” to determine what benefits you will receive; friends and family want to know if you are as sick as you say, and “why isn’t she working yet?” and strangers look at you, head cocked, trying to figure out your illness by looking at your medical tag – or worse, they just flat-out ask. All are measuring up your “sickness” for their own needs or curiosities. It is exhausting enough to be ill, but the added stress about whether you are living up to the image that others consider a serious health issue, compounds the frustration.
This is why I haven’t complained on social media about these side effects; which is sad. It is sad to think I cannot be real on a place that is supposed to be about people’s “real lives.” I find that the superficial stuff is getting really old, and that the real shit overshadowed by food and travel photos; which I admit, I also like to look at. Nobody wants to talk about my puking in the garden when “Janet” just went to Norway and has photos posted! I get it. However, it does take away an outlet I have to connect with others about what is going on with me. And like it or not, this is all that I am doing right now, trying to keep breathing….yawn, so boring, I know.
So I will be out in the garden, telling my woes to the tomatoes, and keeping happy thoughts of a great harvest when all the hard work is done. I may puke in the bushes a few more times, but the eggplant won’t judge and the okra won’t laugh. I am where I belong for now – titrating in the dirt. I will post photos.