Sunday, September 3, 2023

9/3/23—Feeling Human Again. Finally.

It has been nearly five years since I have made a new post here. And this post is in no way an indication that I am going to start blogging regularly again. But I have something I want to blog about. I need to get this out. And it is about my health. 

Because I know reading about other people's health journeys can be unfun, I'll go ahead and skip to the end. For the first time in over a decade, I feel like a human again. That's all you need to know. But I need to write about the trauma in between to organize it in my mind and to understand. Writing helps me think things through. 

Five years ago after a long illness and many misdiagnoses, I had open heart surgery to replace a heart valve. Basically, every time I moved, my mitral valve would not pump blood correctly. This made it hard for doctors to spot because when I was still, my valve seemed to work well enough. It wasn't until they looked at it when I was moving that they saw the issue and immediately scheduled me for surgery. The doctor said she was "horrified" by what she saw. Suddenly my complaints over the previous seven years bore out. Over time, I had been diagnosed with everything from obesity to asthma to hypochondria. While they knew I had a bad heart valve, they always thought my problem was caused by something else. 

Rheumatic valve disease is caused by rheumatic fever...or strep throat that has gone untreated too long. So the illness actually started when I was maybe 8. I never knew I had rheumatic fever, though I do remember a really bad strep incident. If it had been diagnosed, I'd have been on antibiotics all my life and doctors would know to keep an eye on my mitral valve. From what I can tell, antibiotics or not, when you get in your 50s your mitral valve will finally be damaged enough to impact your health. Can you believe that? This disease was in me for 40 years while it slowly damaged my heart valve! Mine went so long undiagnosed that a repair was impossible. So I have a valve made of pig tissue now

I always feel a need to say this. I am overweight. It is not healthy. But my heart has no issues that come from the horrible nutrition I've practiced all my life. All the doctors blaming my issues on being overweight were wrong. My heart was initially damaged 50 years ago. The damage it has now comes from the years of misdiagnosis that made other parts of my heart compensate for so long. There are no clogged arteries. I have plenty of issues from being overweight. But this isn't one of them. Doctors are frequently biased against heavyset people and it impacts their ability to treat them. My weight is what got me called a hypochondriac. That doctor—a doctor I had been to for years—made recommendations ("you just need to exercise harder!") that could have killed me based on his bias. 

In the last year of my valve journey, I no longer felt part of humanity anymore. I couldn't leave my house without someone to help me. I couldn't go anywhere because I couldn't get from the parking lot to a store. I had chairs placed throughout my 1200 square foot home so I could sit and rest on the 30 foot trip to the kitchen, for example. I fully believed I'd die. In fact, I was hoping I'd die. It was such a dark, painful time and it lasted a long time...long enough to damage me both physically and emotionally. 

Everybody talks about how, after open heart surgery, you feel so good afterward. That wasn't the case with me. I hadn't been able to move for over a year prior to the surgery. We are talking less than 300 steps on an unusually active day. So there was no cardiovascular capability left. And trying to rebuild in the wake of my surgery was difficult for me. I was OK. I could move about the house. But I still wasn't quite well. As early as last October when my sister came to visit, I was still having issues with energy and breathing. We went up to Skyline Drive to see the foliage. I could enjoy the view but I couldn't really get out and walk around. I felt like that was the best it could get. And I accepted that, because it was better than before.  

I'm not sure entirely sure why it has taken so long. Part of it was physical. I was having a lot of afib. I don't even remember how many times I've had my heart shocked now. Six? Eight? And I'll be honest, I didn't work hard at the cardiovascular exercise because it made me worry about my heart and triggered memories of all the trauma I had pushing my cardiovascular capability prior to surgery. Literally, I could have died each and every time I exercised per doctor's orders. And it felt that way. Yet I felt doctors were unmoved by my complaints. 

Last October, I got new medications. And things got worse. Then they adjusted the medications. And since then I've felt better than I have since I was in my 40s. My bad days now are exponentially better than my best days over the past decade. If I had to guess at what made the difference, it was regulating my heart rhythm. Once I started taking rhythm and rate drugs, my life turned around. I don't know why they didn't give them to me before, but they didn't. So there were many physical and medical reasons my health hadn't bounced back the way other open heart patients might.

But there were also emotional reasons. There was a time in my life I power walked five miles a day. I loved walking...and walking fast. I was a beast. But when you have a health crisis every time you head out for a walk, walking becomes terrifying. There were many times I "got stuck" in the middle of my walk and had to nurse myself home. I've only recently felt confident I can go for a walk without having an episode. 

Beyond the emotional (and just general living) trauma, though, I had spent years preparing for my death. I stopped dreaming of things I'd like to do. I stopped living. As I said above, I WANTED to die. I just wanted it all to be over. It was a very dark time and it still brings me to tears thinking about it. I have no idea how I got through it. Or how I continue to, because sometimes it gets overwhelming. My heart is not my only challenge. It just looms the largest.  

The part that hurt the most for me was having the doctor tell me I was a hypochondriac when I was in such "pain". This made me afraid to complain about my symptoms to subsequent doctors. So I downplayed how I felt. And even then they were puzzled as to how I could be feeling the way I said I was feeling. But they saw it. They saw that I needed a wheelchair. They saw my gray skin. They saw the lifelessness in my eyes. They didn't know what was causing it until they looked at my heart while I was moving (a stress echocardiogram). 

So in all that time, my body atrophied. My home got incredibly cluttered. My finances took a nose dive. I was having traumatic and post traumatic stress. I was depressed. Everything people rely on to live eluded me, even after surgery. For much of the past five years, I had accepted that my life would be manageable, but hard. I had long since forgotten what it's like to just feel normal. 

So imagine my surprise when, after my last medication adjustment in October and my ablation in spring, I am like someone who has never been sick at all. Really the only indicators of my issue in the past year have been the mountain of medications I swallow each day and some limitations I can live with—I need to avoid the heat...even a really hot shower makes my heart go crazy; I need to rebuild my ability to walk (I can probably go a mile right now, but might need to catch my breath); and I have lingering nerve damage in one of my hands caused by the makes two of my fingers numb and less capable. This last one is a daily reminder for me. I never not feel it. The damage occurred from the position I was placed in during my surgery. It's not uncommon. When I woke from surgery, my entire hand was "paralyzed". Now it's just two fingers that work well enough, but always feel numb and a little arthritic.   

But coming back to life has its own challenges. All of a sudden, now that I'm going to live, I need a life...haha. What I mean by that is that I need to dream about my life, have ambitions, chase goals. And since a decade or more has passed since the last time I had goals other than to live, I'm not sure what I want now as a 60 year old woman. 

Also, I no longer have an excuse not to clean my house and clear out clutter. I have made great strides in the past year, but am still maybe only a little more than half done. I also decided to do my own yard work this year (not the mowing, though). So I look for days cool enough to do that. And I am behind on that, but have done a lot this year. All of this is teaching me a new rhythm. I have learned that if I wait until something bugs me enough, everything will eventually get done...haha. So I'm not forcing myself to "get back to normal". It is coming in its own time—timing that may seem slow to others, but divine for me. 

I'm also leaving my house more now because I can. All my grocery deliveries have turned into grocery pickup. I will probably never grocery shop again for myself, but it won't be because I physically can't anymore. And I do normal person stuff more and more. I am and always will be a hermit, but my surgery was followed quickly by Covid and I rarely ever left my house for years. Covid doesn't scare me as much now, but back then I wasn't well enough to be a likely survivor. 

What I guess this all boils down to is that my life force was gone for at least a decade and it has recently returned. It is surprising to me. It's a new feeling. And I'm not entirely sure of what to do with it. 

Last week I had a dental cleaning and when the hygienist was done, I let out a dramatic sigh. She laughed and asked me what that was about. I said, "I don't like being inconvenienced. I lead a pretty blessed life." That is all true, but I immediately wanted to correct myself because I wasn't owning the two cardioversions (shocks) I had gotten in the past year. The two hospitalizations. The ablation surgery. The two upper endoscopies and one colonoscopy. The CAT and PET scans. The cancer diagnosis (I'll be fine). The echocardiogram. The thyroid biopsy. And the stomach tumor biopsy, along with all the blood tests. All of that happened in just the past 12 months—the year I finally started feeling good. 

The truth is that I have a doctor appointment at least once a month on average. I am inconvenienced at least once a month in ways that go beyond a dental cleaning. In my head, I'm fortunate. And I truly am blessed. And I DON'T like being inconvenienced. But I feel like I do myself a disservice by pretending I haven't been through hell and back more than once in my life. A dental cleaning is nothing compared to, say, the inconvenience of being a lifelong side sleeper having to sleep on her back with her legs elevated for a month with a fresh 12" scar going down her chest. Or waiting 35 years for my father's murderer to die. So I have been thinking about how I view the whole deal in my mind. It's not nothing and I frequently act like it is. 

I think that many people who have known me through all of this will say I've taken it in stride. Or I've been brave. Or positive. I've taken numerous knocks but keep getting up. That's all true, I guess. But I have also been deeply traumatized. Deeply traumatized. I have been frozen and unable to move forward. I have been lost. And I have felt alone, no matter how many people were there. That is the truth. 

Each day I leave more and more of that shit behind me. There are good days and bad days. But right now, even my bad days are some of the best I've had in a decade. I'm no longer drowning in my own fluids for example...haha. But I am still brought to my knees by it sometimes. Recovery is as much a journey as illness is. I wish I could be one of those people who just bounces back quickly. But my brain isn't wired that way. And just as it has taken my spirit a long time to live again, it has taken my body a long time too. 

When I look back, all I see is darkness. It was a very hard time. And I have a lot of work ahead. One benefit is that I have emerged from this mentally healthy and happy. I have moments, but that is all they are. I have recently gone off my anxiety/mental health medication because I no longer need it and it interacts with other stuff...haha. And in some ways, I'm the happiest and most mentally healthy I've been in my memory. Possibly in life. And that colors everything. It means I'm no longer bothered by petty things. And it also means I no longer tolerate things I once did. 

Essentially I wrote all of this for me. To get it on paper. And to show that, for every brave woman, there is a little girl on the inside who is in shambles, just trying to feel her way out. And she has had to make herself far more vulnerable to others than she ever planned. And that, even after she's had a lifesaving intervention, she may not be well. For me, wellness took its time, but eventually came. For the first time since my 40s, I know there's nothing "off" about my health that the doctors need to find. 

I spent years saying, "but it's more than that" to doctors who were just trying to get to the next patient so they could go home and watch CSI. It sounds harsh, but that was the case. Nobody was working overtime to try to save me. Nobody seemed to care. And yet that is what I and countless others who have faced a life threatening illness have had to face. 

Because of my spiritual beliefs, I think I was saved for a reason. I still have a mission from the universe that I need to complete. The way things went, it's a miracle I'm alive. There were many hospitalizations and 911 calls...many nights I lay in bed, gasping for air, hoping I wouldn't wake. But here I am, feeling better mentally and physically since any time I can remember. To have both mental and physical wellbeing at the same time, it may be since my 30s. And further reflection makes me doubt I was fully mentally well back then..haha. And, hey, I could still die at any time. But so could we all. 

It has been hard for me to be a great friend to those who are sick. It triggers fears and PTSD. I wish I could be the person others have been for me. I'm not there yet. It's still raw. And I'm good in other ways. But if you are and you know someone struggling with their health, they need a friend who will listen. And someone to believe them. And even cry for them or advocate for them. Or really just to listen. Even though I have talked about this a lot, I still have things to share. 

Ultimately, we are all alone. You can have a posse of fans, but you will still go through it all alone. Such is the human condition. But never doubt that that person needs you. Maybe they don't know how to ask. Maybe they have a hard time accepting help. Maybe they have given up. But try anyway. Meet them for a cupcake and a Starbucks and ask them how they are REALLY doing. After that, all you need to do is listen. 

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