Author: Cheryl Jones

I love Christmas! I love Santa, Christmas music, shopping, decorations, Polar Express, Christmas trees, gifting, cooking, and EVERYTHING that comes with it! I JUST LOVE CHRISTMAS! I guess some would say I am a Christmas freak! They wouldn’t be wrong! Hahaha. I can’t express how happy I feel during this time of year; like a child really. Now that Christmas is upon us, I have been a busy bee with presents and cooking and watching movies in my Christmas PJ’s all cuddled up with fuzzy blankets and hot chocolate. Christmas has always come with so many wonderful memories. That is why this season is just so important to me.

I have been listening to Christmas music and planning presents since July. It is serious business, this Christmas thing, and I take my enjoyment of it VERY seriously. I made great plans to put aside my sickness and all the worries that came with it during this holiday season. I mean, I have the rest of the year to worry about it, right? But as life does not consult me on these matters, fear has filtered in through my cloak of hope and joy this holiday season. But this time, it wasn’t concerning me, but a loved one.

I have had many years now to consider my illness and mortality. Those considerations have been an education, to say the least. What I have learned, and how it has shaped me as a person, has been the one true gift of heart failure. As trifling as it sounds, I have found on my journey all that is really important to me in life – what I should concentrate my efforts on, and what I should let go of. When you are not sure how much time you have left, you seem to focus your energy on the things that bring you joy, are useful, and may help others. You discover what your life’s purpose really is; accept and appreciate all you have accomplished, and love who you became as a person in (or despite of) those efforts – and miraculously amongst it all, you somehow find peace.  I am thankful for all these realizations. That is something else! You learn that in everything, there is ALWAYS something to be thankful for!  All of this “realizing” is no easy feat, however; and trying to relay those epiphanies to someone else, even more so.

I have a close family member, who is now going through their own journey with illness. They do not have heart failure as I do, but it is a grave illness. I won’t mention who it is, or what it is, as I do not have their permission to do so, and I want to respect their privacy. I will say that being the person going through the rollercoaster of illness, is much different than watching someone you love do the same. I am witnessing all the emotions I went through and all the stages of grief that comes with a diagnosis. I want to help them by having them skip through some of the stages – especially the ones I got stuck on so long like “Denial and Anger.” I have tried to be helpful in offering advice, but I have come to realize that my walk, is not their walk – and the truth of the matter is, that we all walk alone on this journey. Unfortunately, it is an isolating feeling. No matter how loving, and good-intentioned your family, spouse, and friends are, they cannot understand how it feels to face mortality and leave them behind. There is guilt that comes with that. There is fear in not really knowing where you are heading. And there is a sadness that life doesn’t feel “complete” yet.

It really is horrible timing to have this illness diagnosed at Christmas. There are so many waves of emotions that cycle (and then recycle) when you first receive the diagnosis, and those emotions become “all-consuming.” I really want them to find some happiness during this season with family and friends, but I know that will be difficult at this early stage. I can’t change the timing, but what I can do is tell them I love them; encourage them to fight with all they have, and then remind them of the wonderful and fulfilling life they have had. I can try to release some of that guilt by letting them know that their choice for treatment is their choice alone, and I will support them on whatever they choose. And finally, to let them know that no matter what, there are people here who will miss them, but there are also people who have missed them, and are waiting for them elsewhere. It is comforting to feel like wherever you end up, love and “open arms” are waiting for you.

My Christmas wish to them is finding the strength to stay optimistic that they will have the best outcome possible; and if that best-case scenario doesn’t happen, finding peace with whatever happens. But also to feel that life has been such an adventure (good and bad) and was simply a beautiful and wondrous ride: in short, they had a journey lived well. Knowing this and really feeling this, is such a gift. Honestly, that is my Christmas wish for all of you.

May you find peace, joy and love this holiday, and always. Merry Christmas.

 

I know I have been silent for a while, but I was waiting for “stuff” to happen that was worthy of writing about.   Sooooo, “stuff” has happened: some good, some bad. My family and I took a direct hit from Hurricane Irma, I received a job – oh, and the last nugget is the best – I found out that the drugs are not working and a heart transplant is most likely in my future. Yay.

For those of you who do not know, getting ready for a hurricane is a HUGE ordeal. Shopping for tons of stuff you may, or may not use, amongst the entire community shopping, for the same EXACT items! It can be very consuming and frustrating. Water, of course, is the main commodity. It took me days to gather all the items for my well-planned arsenal against the coming storm. I was even able to find whistles for my family to wear around their necks in case of an emergency, and a dog lifejacket for my pudgy out-of-shape boy, as we live near the water and the storm was predicted to bring 15ft storm surges in our area (which was complete hype as we barely had water puddles). This storm ended up being a “wind” event and not a “water” event at all. In preparation you also need to take down every item outside; put away lawn furniture; take down patio lighting; trim trees; etcetera. It takes a huge toll on every family member to get ready. I am thankful we had a 2-week out notice because we needed every minute of it to be as prepared as we possibly could be. It is downright exhausting – physically and emotionally: especially for someone with an already diminished capacity of heart function.

The storm was originally predicted to skirt the East Coast of Florida, but Irma did not get that memo and decided to head towards the West Coast where we live. Even though we knew of Irma 2 weeks out, it wasn’t until about a day (or 2) out, that we knew for sure that it was coming for us. We were ready. Deciding to stay is a huge task. Do you risk getting caught on the road and weathering the storm, or do you “hunker down” (a favorite expression amongst weathermen) and hope your preparations are enough? In the end, we decided to stay. Our 1956 concrete-block, sloped-roof, Florida home had seen many a hurricane – hell, she was built for this. We just hoped we were right, and that all would be fine. Anyone who has lived through one of these natural disasters will tell you, “The waiting is the hardest part.” You spend weeks getting ready, and then you sit in your dark house (because all the windows are shuttered) and wait. Part of waiting brings with it the second-guessing on whether you should have left. Of going over in your head the checklist of whether all the “hatches are batten down.” Some get really bored. Others get really scared. And even others get angry at the chaos of it all and lash out.

My husband tells me, in the eerie quiet before the storm, just when the wind started blowing and you know that the “Beast” is coming, about how anxious he was in that he didn’t know what the outcome would be. Would we lose our roof? Would we really have 15ft storm surge? How long could we be without electricity? The worries seem to multiply by just talking about them; as if the anxiety itself could regenerate into new bots that found crevices you hadn’t thought of yet. And now – now it is too late because the Beast is already here. You always think there is something more you could have done to be sufficiently ready. I remember saying to my husband at that moment, that the feelings of anxiousness he felt, was exactly what I live with everyday with heart failure. I know the Beast is coming, and on the bad days, I can even feel the wind at my neck. She is ever-present and menacing. It is a tiring way to live, in that constant state of heightened awareness.

So Irma did make her appearance, and my little house withstood her wrath. For two hours the storm stalled and we were situated inside the eye-wall that entire time. We had some tree damage and our fence went over, but our roof wasn’t damaged and the storm surge never came. We were lucky and escaped the worst, we think. However, my neighborhood was hit hard. Lots of really old and big trees were felled. It was heartbreaking to see the damage to such a historical neighborhood. One of our famous homes in the neighborhood is the Thomas Edison home and Laboratory. They had some big trees fall but no damage to the home itself. I think, collectively, we all took a big sigh of relief that Irma decreased in strength before slamming into our community. We have lived in our home 20 years and have seen some hurricanes, but Irma, she was a brutish girl.

That was over two months ago and yet, there is still debris everywhere and trees that need to be attended to. It may take several more months to get back to “normal” around here. The truth is that the landscape has completely been disfigured in some areas, and therefore, be forever changed by Irma. But that is what the storms of our life do – they forever change us.

Even though Irma did cause havoc, she brought me a blessing too. Irma brought me a job. I was contacted by the Director of Education from one of our local colleges, right after Irma came through. He told me that one of their Interior Design Adjunct professors left the area, fleeing the storm, and decided not to return, and would I be interested in teaching this class? Of course, I said “yes.” I have been looking for an opportunity to keep my mind busy and negate all the free time I had for overthinking my situation. This was a perfect scenario for me.

Although nervous at my ability to convey all the information I hold on the subject of interior design, I dove in head first, with only one week to prepare my course outline for the entire semester. I believe that the class is well-developed and has a rhythm that makes sense, and more importantly, is translatable to real-world application. The entire point is to make sure these students can take this education out there and receive employment. It is my hope too, that my passion for this vocation and how we bring function, thoughtfulness and inclusiveness into client’s spaces, and how that positively affects those clients lives, will be something that the students remember; as what we do is so much more than “pillow-fluffing.” I have only been at it for 6 weeks, so I am not sure of my effectiveness as of yet, but I do know that I have enjoyed it. I hope to stay “well” enough to continue.

A month ago I received a new echocardiogram to determine my heart function after being on the meds for 6 months. We had big hopes, and even were told we could expect “high numbers” in response to the drugs. I had to wait 3 weeks to get the results of this test for various reasons. The wait is the hardest part again. It is maddening. Anyway, we traveled to Orlando last week and finally got the results we waited almost all year to hear: no change. Bleh. So all the side effects I have endured, have ended up with a big pile of nothing. “Well this is a bunch of bullshit,” I think to myself. One quick glance at my husband, and I knew he agreed. I think he suffers my side effects more than I do. So, obviously this is more than disappointing. In fact, it is a game-changer.

The mood of this visit was sobering. There was no “cheerleading section” of how I could get better, if I just did “xyz.” There were still charts of statistics that he pulled up for us to view. But these charts only showed my mortality rate if I stopped the meds. So the conversation went something like this:

Me: “So, what you are saying is that even though they are not working, I still have to take them?”

Doc: “Not only take them, but double them. 100mg a day.”

Me: (thinking – probably with my mouth gaped open) “What in the absolute fuck is happening here??!!”

Doc: “They are working, as your numbers would have been lower without them. And the statistics prove that your probability for death is greater without them.”(come to find out, what he meant was that these drugs, at the higher dosage, will give me about a 30% chance of preventing a sudden death incident)

Me: (thinking) “Fuck! No. Not fucking doing it.”

Ok, so you get the gist: once again, I am not happy at the drugs apparently being such an “integral part of my treatment,” but not actually doing much but making me sick and miserable. Just doesn’t make sense to me.

I left this appointment understanding that my chances of recovery were no longer on the table; that my current level of function would not improve and that I was to “run with it” until heart transplant. Well, this sucks. I never wanted a heart transplant. From the beginning, we were seeing these specialists as a way to avoid transplant. I am disheartened – no pun intended.

So taking this insanely high dosage of meds is not open for negotiation with the doctor either. Part of the deal to being accepted for a transplant, is the willingness to accept the drugs. The doctor reminded me again that after transplant, the drugs are much worse – and pointed out that some of them causes tremors. “That is helpful Doc, thanks.” ugh.  Don’t get me wrong though, I still admire and respect this doctor. I will do whatever he tells me to. I still think my best chance at living a long life will happen with him. I cannot explain how relieved and happy I am to have him, and to lay my life in his hands; I trust him explicitly. And in return, he respects me enough to tell me like it is.

The current treatment is to double the meds, and to begin cardiac rehab. I need to understand how I can (safely) get my heart and body into the best shape possible. This is so I can continue to live as long as I can with my current physical status, and so I can get in physical shape to live through a heart transplant, when the time comes. Now, I am waiting…and preparing; preparing for a Beast of a storm that I now know for sure is coming for me – Hurricane Cheryl.

Emotionally, I still do not know how to digest such news. I have always leaned on denial, and anger. But those even elude me now. I had a moment of “why me” – which was really surprising and never even a “blip” on the radar before; as I still believe my life is no better, or significant, than anyone else’s life. I think I have run the gamut of possible emotions, and now I just don’t know how, or what, to feel. Maybe I shouldn’t even try to assign emotion to this situation yet, as these are some uncharted waters of my life. So I will just concentrate on the task at hand – getting stronger so I can fight the Beast that is coming.

Hurricane Shopping List:
Water
Batteries
Shit-kicking boots…

 

 

 

 

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.)

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.

 

Today is the two-week mark on doubling my dosage of the dreaded meds. The last 2 weeks were not torture, but I did experience joint pain, dizziness, nausea, fatigue and night terrors. Yes, I did expect it to be worse. I am only at 1/20^th of the recommended dosage so I know I have a bumpy road ahead. But I already knew this, before I even began. Being a person with a sensitive system to all drugs, including seemingly harmless ones such as Novocain at the dentist, I anticipated some undesirable reactions; but some in particular bother me the most. Death, you may say? Maiming? Life-long maladies? Nope, I am worried about weight gain, bloating and hair loss. That doesn’t mean there aren’t menacing and painful side effects that I will not deal with, and I am prepared to face all of the side effects head-on, in order to improve my heart function. However, and with that said, my inner diva wants to draw an imaginary line in the sand where getting better means being ugly and fat. “Can we address the diva in the room, please!?” Where the hell did this chick come from anyway? I never knew I even had an inner diva, as I have always considered myself a humble person, yet here she is; and she is pissed and loud. Hmm, now that part I do recognize.

I can honestly say that I have never considered myself as vain. I grew up in a household of beautiful women, from my grandmother all the way to my youngest sister, and I accepted my place in the ladder of hierarchy of such things – mine being the bottom rung. My family never expressed that I was any different on the “Richter scale” of beauty from them, and I never really felt like less of a person because my outward beauty wasn’t as refined. It was just obvious. But, I was who I was, and they were who they were, and that was that. I don’t ever remember feeling jealousy, as I believed, then and now, that neither of us are any better than the other when it comes to the appearance of our outer shell. I still believe this is a healthy approach to the subject. We all look different and that is okay. Besides, I simply loved them, and how beautiful they were was inconsequential regarding my affection.

However, I never liked that I was heavier than every woman in my family: I still don’t. I have always struggled with my weight – fluctuating anywhere from a size 4 to a size 16, throughout my life. That was something that bothered me because the women in my family are very small and I stick out, like a huge pimple on the beautiful ass of life, in that regard. As I begin these meds, the scale hasn’t gone up, but I have noticed my waist feels expanded. This is in direct relation to what the drugs are supposed to do, which is to relax all muscle, including heart muscle so it can work less, which is the point with me, and that makes everything feel flabby and gross. I am hoping some exercise, after I feel “righted” on the meds, will combat some of the loose muscle feeling. The meds also cause edema and hair loss. It is just a big shit salad if you care about what you look like. Right, right…I hear you from within my computer screen, “But isn’t feeling better more important than looking good?” I assume “yes” is the correct answer, so I will go with “yes,” but with each day that my clothes are tighter, I have to reassess that answer again. I have a feeling that this struggle will be a daily determination of health over vanity; and this comes from someone who never considered themselves as vain to start with! And here I thought that I had already successfully traveled through the stage of grief, “acceptance” in my illness. It seems we are going to live within the stage “acceptance” for awhile more.

With my weight, much has been learned along the way in my 48 years of life. However, it was in my times as being thin that I learned the most; that I learned to not be so critical of my heavier self; to give my body the same borderless admiration and respect that I give my intellect and morals. Not that I will jump on the bandwagon of those who justify being overweight as “self-love.” Being overweight is unhealthy. Period. Self-love is about treating your mind AND body kindly. That means being healthy. If you are trying to convince yourself differently, you are just copping-out. However, liking one-self BECAUSE you are thin is just as unhealthy as hating yourself because you are fat. And the reverse side of that coin translates the same. One should like themselves because of who they are: their morals and convictions; their integrity; their motivation; where they find their grit and self-worth – all contribute to building inner strength. And believe it or not, that structure of strength is completely stable without considering what size pants you put on today. Your “worth” is completely determined by you.

I wonder what most people consider a “woman’s worth?” Is it her beauty only? Current society would say that a beautiful body and face is the most desirable trait a woman can have. And marketing strategies would sell the message that without this lipstick, botox, car, we cannot keep up with our desirable counterparts. In this climb to an unrealistic summit, many women, who value other attributes beyond all the hype of spending hours in a mirror, will be left behind: so much energy into something of so little value to the advancement of the human species. Now, this would have a completely different spin if we were to discuss the evolution of our species, and their method of choosing mates by comparing their genetic health. Simplified, a desirable mate would be one that looked healthy. That is it! Think about our standard of beauty now and how that would work in genetic profiling. An emaciated supermodel with low muscle density certainly would be discredited as sick, while a healthy-weight individual (probably considered overweight by our current standards) would be sought after.  So maybe health does trump beauty after all! Well, if we were all still Neanderthals anyway!

Many internal questions are brewing within me on what I consider my “worth” to be these days. It is a very complex question and mutates each time I approach it. I suspect, it is a question that will be answered over and over again throughout my life. But for me, today, and with this illness, I concede that it isn’t beauty at all, but I aspire to reach endurance: a quiet endurance in fact. This is not easy, as I have never been comfortable in quiet.

My appearance wasn’t all that made me different than the women in my family. I was boisterous, or as my grandmother would say, “Cheryl Ann! Too loud!” My grandmother, mother and sisters are all soft-spoken. That is one thing I have never been accused of. I began my adult life wanting to be heard; wanting to be that bull in the china shop and get shit done and take names – and for the most part, that is what I did; with an intense, borderline aggressive, personality. I found it earned me respect, or at least I thought that it did. But the real lesson on earning respect was there all along, with my soft-spoken maternal kinfolk. I only realize now, how much power is in soft-spoken words and how much bravery it takes to smile politely when you want to yell indignantly. The easy response is the knee-jerk one of rebuttal; of not taking shit and calling out an enemy; my “go-to” response. The harder “row to hoe” is the quiet endurance of a woman who cannot be lowered to such hyperbole. I am certain my grandmother, mother and sisters, have taken more bullshit than one person deserves, without ever saying a word. They had the fortitude to stay upright and calm. Unlike me, they are not comfortable in anger. Of all the enviable attributes my charming family holds, this is the one I am jealous of, and, the one I find most beautiful.

My new strategy regarding the drug acclimation is to take a path of “least resistance,” not as the stubborn bull that is me, but as the gentle stream carving a riverbed, that is them. The softer approach is awkward, but I am hoping that even if the side effects suck, that I can learn to cope with them in silence. My family has been through enough. Meanwhile, I am challenged to find my changing worth and strength in the quiet corners of this illness. I promise that I will smile politely, curtsy, and dance with the demons of drugs and self-doubt in the months to come. Please knock loudly if you need me, as the brutish demons are always “too loud!”

 

My family loves Disney World and Seaworld. We travel to Orlando, Florida, several times per year to get our “fix,” but this time was different for me. Within the magical walls of Disney, we have spent many vacations of happiness, and those vibrant memories call us back, over, and over again. I anticipated that this time we would have some adjustments, because of my current capacity of heart function, and we would just have to improvise along the way. I worried that I would not be able to keep up and that I would somehow ruin the time of my family; so, I compensated…well, I tried to.

Day 1 of our trip was at the Magic Kingdom Park. This is my favorite Park, but also, in my opinion, the hardest to navigate a wheelchair in, because the pathways to most areas are congested and many people just run into the chair.   This was tested earlier with two of my children having injuries, but on different occasions. It was decided that I would forego the wheelchair and “see how I would do.” If I were being honest, the walk just to get inside the gates of Magic Kingdom already had me winded. I told myself to just sit and take breaks a lot. This is easier said than done, because I didn’t want everyone else in my family to spend their time at a theme park just sitting. As usual, we split up with fast passes – Bryan and Aubrey to the roller coasters, and Ace and I, to slower rides. Ace was great, taking care to not walk too fast ahead of me and sitting when needed. He and I did some “long-sitting rides” such as Carousel of Progress, Small World and the People Mover. We meandered through some stores and then sat some more.

We met up with Bryan and Aubrey again for lunch (at Plaza restaurant which was awesome) and then more walking. After I eat is the worst times of day for me. I am weak and tired. I have been told it is because the blood is being routed to stomach for digestion and therefore, the heart has to work harder to keep up the blood volume for the rest of the body. For me this is a problem because my heart already works too hard, even at rest. Walking after lunch was very difficult. I felt like my legs were lead. I wanted a nap and my head was pounding. It was at this point I realized the decision to not get a wheelchair was probably a bad one. Wheelchair rental is at the front of the Park so turning back to get one wasn’t something I wanted to do either. So, I walked – with my heart beating out of my chest and my head swimming. I felt compelled to “carry-on.” I told myself I needed to for my family, so I didn’t ruin their day, or so that this trip was equivalent to previous trips in “worry-free” fun. But in hindsight, it really wasn’t about my family at all, as they were having a good time with, or without myself dragging along. It was about me, and the experience I would have at my “happy place.” I decided, before I even left my house, that Disney in a wheelchair wouldn’t be enjoyable; or at the very least, not the same. So I ran myself out. It didn’t take long before I was napping in a shaded corner on the ground. I simply could not do anything more without this rest. After about an hour, I felt like I could continue.  We left the Park at 5pm. I am uncertain whether the family would have stayed longer without my dragging-ass along.

 

The next day was Epcot, and I knew there was NO way I would be able to walk it all day; especially because that morning I had woken up to edema in my feet and ankles from walking too much the day before. Today, we would rent a wheelchair, much to my disdain.

So $12 later, we had this wheelchair; this symbol of inferior human status, that I was to display the fact that I was “lesser” than all the “abled-body” guests. As a person who advocates for disability rights, for a career and for my son, this may sound brash. But this is the gross truth – disabled people are viewed poorly, and is why they are the #1 discriminated minority worldwide. This fact burns me to my core and why I have been so vocal for their rights in the past. I now find myself in the position of looking through a keyhole at what the disabled community endures when it comes to society’s perception. I didn’t like it. So much so, that I refused to sit in that damn chair the entire day. I sat in the chair when long distances were ahead. Other times, we parked it. I had a choice to sit or not – that makes me lucky. Others aren’t so lucky.

While peeking through this “keyhole of disability,” I noticed who looked at me, and how they looked at me. Most the time, nobody really noticed me. I mean, my eyes are at their butts (which sucks) and so it was easy to look past me. I was invisible to most. This is a statement that is prevalent in the disabled community and I can see why. The ones who did look at me in the chair, mostly had an unfriendly gaze. I am not sure if they were assessing whether I had a disability and decided I didn’t, as my outward appearance doesn’t display my ailments. Or, if they were just inconvenienced by the fact that I was there; in a wheelchair, probably considered in their abled-body, and therefore entitled, way. Either way, I was uncomfortable. I felt like now, I was not only a hindrance to my family having a good time, but apparently to EVERYONE at the Park. I ditched the wheelchair each chance I could, because in it, I felt apart from the rest: a “one not like the other” sort of feeling. Out of it, I felt accepted into the crowd. It turns out that I was right: Disney in a wheelchair is not as enjoyable – at least, not for me.

I accept this could have been my own perception, and not actual. But isn’t that where we all live…within our own perceptions? And how is it that my perception is echoed across the disabled community by thousands upon thousands, if there wasn’t truth to it? They can’t all be “perceiving” injustice, inequality and discrimination – much less, unfriendly stares. This experience has only compounded my determination to become a mouthpiece for disability rights. Once I am well again, I will fight even harder to be heard for them.

This trip has made me think a lot about the fortitude it takes to live as a permanently disabled person. Fortitude is described in the dictionary as, “mental and emotional strength in facing difficulty, adversity.” The strength in character it takes to look beyond the unfriendly stares and judgment must be a huge daily challenge. It seems to be “insult upon injury” to have to deal with such unnecessary indignation.   I am not sure I would have the grit it would take, or the tolerance. Hell, I was sore by this one experience at Disney! I can’t imagine how irate I would become with constant exposure. I envision lots of swearing…lots and lots.

Beyond my ineptitude of embracing the wheelchair, and all the stigmas that come along with it, I found a deep respect for others who can – as it must take a “lion’s will” to stay composed. I presume that the fortitude required isn’t just the strength to get through the difficulty, but also the capacity to face that situation in a spirited and resilient way: to resolve to find happiness anyway – especially at the “happiest place on earth.” That is the “good stuff” in which I should have drawn upon during my time there, just enjoying where I was and looking through the glares with a smile. I won’t wager my joy again because the “sheep of society” may view me as “lesser.” As they say, “Lions don’t lose sleep over the opinion of sheep.”

Three more months of waiting concluded yesterday with meeting a new specialist at a transplant center 3.5 hours from our home. The distance didn’t really bother me, but having only traveled it once, I cannot say if the constant back-and-forth trips will not become tiresome. My husband is quite sure it will; but what other choice do we have? You would think that with the amount of snowbirds living in Southwest Florida, having heart failure specialists with the facilities available to perform heart transplants would be a profitable venture here. Anyway, I digress.

This transplant center was a complete opposite from the previous jail-like structure we visited a few months ago. It was welcoming, calming and, in general, just well-designed. I guess that isn’t always important to some, but to me, as a designer, and more importantly, as a patient, it is. It means that the establishment cares about the comfort of their patients – that thought was given for the nervous sick people and caregivers who would visit here. This immediate first impression was soon supported by our experience with the friendly in-take staff. We watched other staff emerge and greet patients, who were obviously returning after transplant. Staff would come in and embrace these patients as if they were family. It didn’t feel like a corporate business machine that healthcare often feels like. It was different, and it was palpable. This was point 1 in their favor.

We arrived at our appointment too early, as we weren’t sure if traffic was going to be an issue. I settled into the back of the waiting room; ready to sit for at least an hour, as I was an hour early, and feared it could be even longer. It is my experience that no cardiologist is on time. Pleasantly, within minutes I was called for vitals and then taken back into a patient room minutes after that. Ahh, but we weren’t to be tricked by this quick response! As you may remember, Bryan and I sat in the last transplant center patient room over 3 hours before the doctor blessed us with his dripping arrogance. Again, this was different. The aide immediately took our information and then the transplant coordinator came in after that. No unbearably long waiting – a solid point 2.

The transplant coordinator was younger than I would anticipate. She was somewhat abrasive, but probably had to be to get to the position of such importance.  It seemed that she was reading a script; one of which we had heard many times before. The narrative of condescension; of what they couldn’t do; what they wouldn’t do, with a background of who was to blame for my declining health along the way, including my previous doctors and myself. It is so old to me that I barely hear it anymore – just blah, blah, blah. But Bryan, was put off by it. So much so, that I was concerned he was going to say something to compromise any possible working relationship at this center. Of course, his frustration is justified. He and I have been searching for answers so long, and this woman seemed to be verifying that we reached another dead end. After her negative speil was over, we were to see the doctor. I still had hope that maybe the doctor would be more “reachable” than the transplant coordinator. Bryan seemed to have lost all hope already. Emotions run high in these situations, and when you are desperate for answers, but just get kicked in the face over and over again, you get angry. He was clearly angry. Seething, in fact…and then, even tears. This sucks! We are solely dependent on if they are interested in my case, and if they care enough to figure the intricacies of “me” out.  The waiting and wondering has taken a toll on all of us. For me, an uncertain future is scary; for him, the man who loves me, feels responsible for me, it is downright terrifying. He has been the upright structure I have clung onto throughout this mess, so he deserved his moment of exasperation. This exchange with the coordinator was clearly strike 1.

No waiting for this doctor. He walked in quickly after the coordinator exited. I am clearly nervous, with a lot riding on whether we “liked” him, or not. A slight, middle-aged man entered. He was soft-mannered with a warm smile. I was relieved that the usual bravado was absent. He actually reviewed some of the thick file I brought in – his brow furrowed; he asked questions; I answered; more furrowing brow and then lots of typing on his computer. This went on for an hour. Bryan and I have never been so quiet in an initial appointment, as there is so much information to exchange. We answered his pointed questions, offered what we thought was important, but then just watched him “think,” as he flipped through pages of my ailing life. It felt odd – acutely distant from previous experiences. I am guessing that this is what thoughtful consideration looks like.

I then received a physical exam from him and more questions. Very little talking, lots of furrowed brow, some slightly awkward smiles and an hour later, he states, “Well, you have heart failure.” I almost bursted out laughing, thinking, “Yep, doc, tell me what I don’t know!” Umpteenth doctors have confirmed this. All the cardiac MRI’s have confirmed this. This is a widely accepted diagnosis. It seemed absurd almost to hear him declare it so. He is the specialist on heart failure so I guess it is appropriate. However, I wasn’t there to get his stamp of approval on my diagnosis, I was there for a solution. “You won’t like it, “ he said. He was right, I don’t. Drugs – lots of them. This was strike 2.

I am no stranger to them, having 3 pages on file of all the drugs I have taken for heart failure; all of them, which made me sick and miserable. Sick, like I cannot walk the dog a block; do dishes without feeling like I am going to pass out; sleep constantly, sick. Miserable, like sitting on the floor of Walmart crying because I don’t know where I am; thinking of ways to kill myself, miserable.   All of the drugs I have ever been prescribed were at the lowest dosage because I am super-sensitive. All of them I was taken off of, because of the extreme side effects. His plan is to give me the same low dose my body could not handle, and then double that dose every 2 weeks. And continue to do this until I have the recommended dosage – which is ultimately 20 times more than the dosages that made me sick. He is saying this to me and all I could think was, “Umm…what the actual hell doesn’t this man understand about I can’t handle the drugs?” And then, he tells me in his soft-mannered voice, but with a surprisingly firm hand, “You just have to be sick and get through this until your body adjusts.” I am not sure he understands the level of “sick” this is going to make me. Internally I am screaming, “I can’t do this!” Fight-or-flight mode kicked in and I was ready to run.

But instead of running, he taught me in the hour before, to just listen. And indeed, he said things that I have never heard from any other cardiologist. I will try to articulate what he told me the best I can. He told me that after 8 years of this affliction, that my body had adjusted to my failing heart. That it was working in a capacity in which it could not sustain itself (which explains my constant high-heart rate). That the system in which I internally operate will fail, and I will die. It is true that in the last month, I can feel it flailing. He then explained when I took the drugs before, my body had to act according to it, and it didn’t like doing so because it had a system in place to placate me for the time being; that was why I was having side effects. And, that the only way to extend my life was to force the body to accept the drugs. He told me that he understood I would be miserable. That other patients before me were miserable. But in the end, he basically stated, in his nice way, to “buck up” and get my head into “the fight.” No other doctor has said that. They didn’t care enough about my continued existence to. (That might be too harsh and not a fair assessment. I will give the benefit of the doubt that the previous cardiologists simply didn’t have the knowledge or experience – except the last fucker). This was point 3 for the win!

This doctor told us that all the modern drugs he would prescribe me were ones that he, as a young doctor, worked on as part of the research team, many years ago, to prove effectiveness on heart failure and get approved by FDA. That he personally had conducted hundreds of case studies and as a young man could, “care less how sick patients got and pushed his research until he got the result he wanted.” Although this was not comforting to hear (he did make some disclaimer that he cares about patients now, however) – it does prove his statement that, “it gets worse before it gets better, and you just have to wait it out.” He was adamant that the drugs were the only resolution I had to prolong my life. Then he dropped the “bomb.” He explained that if I could not handle the drugs, that when my heart finally gives out, that I would not qualify for a heart transplant. In order for a heart transplant to be successful, patients take 15 prescriptions a day. In consideration for a transplant, your ability to live with this regimen of drugs would be a determining factor of approval. Well, shit. There goes my plan of just living “as is” until my heart fails and then seeking heart transplant. This plan was never as a way to negate the process, but always as a way to negate the sickness of the drugs. He also affirmed what Bryan and I already knew – living with a heart transplant is difficult. It isn’t as though your life is back to normal. A donor heart also only lasts about 10 years – and if you can’t tolerate the drugs well, the donor heart only lasts about 2-3 years. Heart transplant is not a permanent solution and once you start that clock, there is no stopping the end point.

So his plan for me is to endure the drugs, no matter how miserably, and acclimate my system. He is somewhat hopeful that my heart function will improve with the correct “recipe” of drugs. But if no improvement is seen, that the drugs will give me more time before a heart transplant; and at the very least, my cooperation with taking these “capsules of horror” will ensure I will get approved for transplant when I need one.   So the plan sucks for me, and probably my husband and children who will have to deal with my sickness. But at least it IS a plan. I am sure the next 6 months will be hell on earth for me. I have stated before that I will endure all torture sweetly for the chance to see my children have their own children, so it is time to “put up or shut up.” I will lean upon those who love me. I will also garden, be close to nature and allow that serenity to help heal me.

Nature has always been my church. I never feel closer to God than being outside with the sun kissing my face and my toes in the earth; it could be a beach or a forest, no matter, it all is my temple. Growing up our household wasn’t particularly religious. Of course, we knew of religion and practiced Christian values much of the time, however religion wasn’t a constant. When facing a life-threatening illness, I suspect that religion is a huge part of self-comfort and reliance to those who are passionately religious. I would feel like a complete fraud if I called upon God only because my life faces a crisis, but yet, I felt deeply compelled to do so. There is a quote that says, “When life gives you more than you can stand, kneel.” So I have prayed…a lot. At first I felt awkward. I felt unworthy. I felt like if he answered my prayers that maybe some sick child with cancer would not have theirs answered. I know, sounds silly. I have never prayed for more than enlightenment: to understand what He had in store for me, and to offer my acceptance of such. Over the years I have felt much like the saying, “Are you there, God? It’s me, Margaret.” The epitome of what others call “faith” is praying to an open sky and hoping you are heard. Hoping that there is sense to it all that you just cannot understand. Many years have passed and I still understand nothing. Faith is a long course, it seems.

But as we returned home yesterday, I saw this sunset and I felt a peace wash over me. Maybe I imagined it, maybe not. But somehow, I felt like He has heard me, and He will be with me throughout this journey.

 

 

 

 

 

 

I know I haven’t written in this blog for a couple months, and I am sorry for the length of silence for anyone out there who is actually following along. It was partly due to my absolute disgust at this process, and secretly just “wishing” the heart failure away – because if you don’t acknowledge or “feed the beast” it will go away, right? Nope. And, I was simply waiting for some news to write about. Last week, after months of back-and-forth with the insurance caseworker, my angry and “over-it” local cardiologists office and the new transplant center, I received the news I would be accepted for the initial consultation at the new center. Whoopie…ugh. I may have become jaded in this grueling regimen: excitement of progress one moment, to back-sliding for months, in the next. I will hold my excitement at this new establishment after the first appointment – lessons learned, and all.

During the interim of this transplant center swap, and after I realized ignoring my health isn’t wise, I decided that I needed to take charge and have another Cardiac MRI on my own. I was supposed to have one scheduled in November of 2016 when all of this began, but everyone was waiting on my settling-in with a new specialist and transplant center. Of course, that didn’t happen and so the MRI went to the wayside. Because my echocardiograms are so difficult to read, (my ribs are too close together) I need a Cardiac MRI in order to get an accurate updated ejection fraction and other information. Come to find out, the Cardiac MRI is the most accurate form of diagnosis anyway.   It is difficult to get into another transplant center without an updated chart and my last MRI was May of 2016. I knew I had to have one, and I really just wanted to know where I was at in my journey of heart failure. I admit I also hoped that maybe, by some miracle, my ejection fraction had improved and that the aortic valve repaired itself – it could happen, I theorized, in my desperate attempt to make all of this disappear. The issue was, I no longer had a cardiologist to order the MRI. I decided to go to my general practitioner and ask him to order one. After some convincing, he did.

The MRI went well, I thought, as I did not have as hard of a time holding my breaths as the last visit in May of 2016. The technician would tell me that the reason my breath-holds were easier was because my heart rate was so fast and therefore, in-between beats where you held your breath, was quicker. I continually have a heart rate between 100-120. I still have low blood pressure though. Cardiologists haven’t figured out why this is…yet. Maybe the new specialist will. Anyway, after the MRI was over, the technician said that I was having long pauses of no electrical heart activity between some heartbeats. “Well, this is new,” I told her. I believe she was talking about sinus pauses but this is still to be determined. I know that it frightened her. My MRI results came back showing a slight decline in function, with the following results:

1. Dilated left ventricle with severe LV systolic dysfunction with an ejection fraction of 32.1%. Findings consistent with non-ischemic cardiomyopathy.
2. Severe hypokinesis of left ventricle -mid ventricle and apical level.
3. Severely abnormal left-ventricular end-diastolic volume and severely abnormal left-ventricular end-systolic volume.
4. Moderate aortic valve regurgitation.
5. Mild mitral valve regurgitation.
6. Mild tricuspid valve regurgitation.
7. No masses, effusions or blockages.

As with all heart function tests, it isn’t the numbers so much as the trend of those numbers, and, more importantly, how you are feeling. I can tell that I am declining because of the effort it takes me on some days. I am losing my breath more often and able to do less. But this isn’t my everyday. Last week I was able to do some things on my to-do list, and actually felt pretty good.

I have determined that having heart failure is likened to being a new mother. You have days that the baby sleeps, eats well and you can almost get other stuff done; like taking a shower. Then, there are those days that the baby’s care is all-encompassing: the house chores and personal needs must wait. Add to this scenario the constant fatigue, which never seems to be satisfied. Even though that fatigue is ever-present, there is some excitement on the odd days that other stuff can be done. That maybe a sense of normalcy is resuming. It seems there are never enough of those days. My “baby’s” name is Ethel. She is the persona of my old, pissed-off and ailing heart. Ethel tells me, (in her grumbly tone) “Nothing will get done today! Not showering, not laundry…nothing. I will allow you to sleep and eat only small amounts, because it is too much work.” Ethel is mad at me because last week was a good week (the entire week!) and I was able to get a lot of things done. She is making me pay this week.

I have learned when I “feel good” and somewhat normal, on those days, to make the most of them! I try to do an activity that I really have wanted to do: last week it was canning strawberries, making homemade butter; experimenting on making gummy bears from wine, and 2 attempts of making buttermilk biscuits (both failed but I tried). I also was able to do house chores and even help the family paint the exterior of the house. It was a GREAT week! I almost dared to think maybe the appointment at the transplant center wouldn’t be necessary. The overwhelming hope that things aren’t quite as bad as they seem, always hangs around. But then this week I am down again. I haven’t much energy to do anything and have found that I am sleeping a lot. I am just dog-tired and even the smallest of tasks are taking my breath away. It was all I could do to fix dinner last night. This is the paradox of heart failure; I feel good but I feel awful. Try explaining that to a specialist. I guess eventually, I am told, all my days will be filled with feeling awful. That sucks.

In this journey, I look for the lessons – something my kids will tell you I do about every event in their life too, much to their dismay. I have learned that I spent much of my earlier life 5 steps ahead of where I was actually living. My father drilled into us, at a very young age, that you had to have goals, and you must always be striving to reach them. I took that lesson to heart and I was always looking forward to the next project or event, without really enjoying the current fruition of my hard work. There was always more work to be done, and more projects to be designing next. I was never just satisfied with where I was at.  But what I have discovered in being forced to be “still” with this illness, is to enjoy the here and now. To really take a hard look at what your reality is, and instead of finding ways to improve upon, or elevate that experience, to just revel in what you DO have. It still proves to be a hard lesson for me. Especially with this illness; because as much as I look at it, examine how to fix it, and strive to do everything in my power to improve the situation, here I sit. Still. No answers. No improvement. No goals met.

Amongst the frustration of “being still” I have been conscientious of really trying to enjoy and “live in the moment” on the good days; to not waste them by wishing I had, or was doing, something else. Being present has been the lesson. I get it now. I understand when people say, “you have to be dying to really enjoy living” because all the preconditions we assign to what a “good life” is, doesn’t mean shit anymore. Goals are a good thing to aspire to, I will never stop reaching ahead as it is too ingrained into my personality, but I have realized that they shouldn’t steal the happiness of what is going on now. Now is all that is really for sure, for any of us; sickness or not. And there is ALWAYS something to be happy about; sickness or not.  Keeping goals in perspective, and as a guide only, is a way for them to work for you, and not you to keep feeding them and stealing from your today. Take a look around and know that if nothing goes according to your life-goal plan, that life is still pretty great anyway.

For me, this week Ethel wins. But, hopefully, next week I put a diaper on that “baby” and get back to finding happiness in accomplishing the little things.  That is the goal anyway!

Man, has it been a week! The complete insanity of dealing with super-egos of professionals you look to for a lifeline in the rough seas of your life, can be draining, and just an unnecessary “harm” to those already down.  Last week I was knocked on my ass by such an ego.  After I nicely, and somewhat timidly, explained to the transplant center of the “incompatibility” issues with the doctor I was assigned to, (which really was a nice way of saying that he was a jerk and already figured he couldn’t help me anyway) I received a call that the doctor in question mandated that if I did not want to see him, that I would see no one else at that hospital.  No matter how vulnerable or sick I was, he kicked me out of the program and told me to seek counsel elsewhere. 

Just like that: months, and months (hell, years if you calculate into it my trudging the uphill battle with local cardiologists) to get there and seen by a specialist, all was dashed in an instant by his ego; which is apparently larger than my own health issues.  If only this transplant specialist could figure out a way to excise his own bad temperament and replace it with a kind “heart” that upholds his Hippocratic oath of “do no harm.”  You, sir, have caused harm.  You have jeopardized my recovery by making me start over in finding another specialist.  May I remind you of uttering this empty promise upon taking your Oath:  “I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug…May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.”   You should be ashamed of the ego you have acquired at the expense of those seeking refuge in your education. 

For this particular specialist, the “joy of healing” is his own, and it’s meaning warped by his egotistical illusion of “playing God.”  Apparently, I am not worth saving, because I dared to doubt him.  I guess he showed me, but I will not cower to “false prophets.”  I remain undistracted by his hasty assessment, and the search for an ethical and talented doctor will continue.  “I am happy to call your bluff, sir, and will never shadow your door again.  I haven’t neither the stomach, or time, for such games.”  So now what?  I wait…again, for another hospital to accept me into their program.  Who knows how long it will take?  But this is for certain; there will definitely be a lull in forward-movement for a couple months.

The lull is hard.  We all seem to “pick up arms’ when a fight is looming.  Most of my friends are eager to offer their kind words, advice and help when the flag has been raised.  But the lull, that is when I find that the loneliness seeps in and the isolation of illness most pronounced.  I understand that there is some difficulty in being friends with chronically ill people.  “What if I say something wrong, or am inadvertently condescending?  Do I invite them out to socialize?  Can I talk about business opportunities? Will that insult them or make them sad that they are not in careers right now?” – amongst countless other scenarios.  I get that being a friend of a sick person can sometimes be a figurative minefield, and it is just easier to stay away to avoid any conflict.  But I also would say that this is the best time to engage with this friend.  Maybe learn something new about them such as only being sick will reveal: where they find their hope from; how they apply their grit and determination, but also where their vulnerabilities and fears lie.  Sickness opens up a different type of connectedness that crosses the line of polite conversation.  The truest of friends will want to go there to the dark areas and offer some light when needed.  These friendships are essential.   

I have my own difficulties in bridging the gap of what our friendship once was, and if whether that relationship can survive the tides of sickness, or pass the test of being real or superficial.  The good news is, that fake friends become glaringly obvious.  But the real friends still have leaps to make over their fear of death – mine and their own.  I tried once to joke with a friend about my illness; it didn’t go well.  I made some flippant remark about “not dying” and it was met with a deafening silence, by my most humorous of friends.  Apparently my sickness isn’t funny.  Death cannot be funny, I guess.  It is a shame, as sometimes laughter in the face of something so ominous is a relief: politically correct or not.  I mean my favorite joke in the world is, “Why did the monkey fall out of the tree?  Because it was dead!”  That is my humor, it seems. I need someone to laugh with me about my life, and like it or not, this is my life for now.

I believe, mostly, that having a long illness can emotionally benefit your friends and loved ones in their grieving process, because they get to essentially have the chance to say how they feel; enjoy more quality time together; maybe clear-up previous misunderstandings or tensions, and just to say “good-bye” if that end comes.  They get to come to terms with it slowly.  You always read about those whose loved ones pass unexpectedly, that their state of grief is in not having the ability to say “goodbye.”   However, there is awkwardness in knowing and waiting: and sometimes the feeling of evading that person altogether is just easier, or that it is a better option than witnessing the parameters of a friendship changing.  And some friends simply feel helpless, not knowing what to do or say.  The truth is, I don’t need you to do anything other than just being the person I enjoyed having in my life; knowing I can count on a laugh, helping hand or beautifully choreographed “fucker” slipped into conversation.  Right now I need you to just be you, and help add some normalcy to my life.  

So as my friend, I offer this advice in trying to navigate me on this journey: invite me to be part of your events; go to painting parties; crafting stuff; do lunch and hang out at bars.  I am up for it!  I miss the socializing!  Ask me questions if you want, or don’t!  I am happy not to talk about it too.  Talk with me about other things that made me “me” before this illness became all I am about.  Tell me about your lives, and allow me to be part of it.  Make me interested in life again.  Boredom is my absolute enemy right now, as it allows me to think too much and become engulfed in the “what-ifs” of an uncertain future.  Take me away from all that by engaging in the here and now with me.  Life is constantly moving and I am doing my best not to get stuck in that lull between being sick to finding recovery; asshole doctors aside, the process is taxing, and I need to offset it by finding recluse in strong friendships. 

I am constantly trying to find a balance between “sharing my truth” and focusing on living life happily regardless of my current issue.  I still will make mistakes in gauging what you want to talk about.  There will be times I make light of it as a way to not make you feel uncomfortable – make me tell you how I feel anyway!  There will be times that I am so angry at the process  – curse at the sky with me!  I need that camaraderie because underneath this illness, I am still “me,” and we are still friends.  When you are sick, it is easy to sit down for a while to take stock in what is happening and how best to deal with it.  It is also easy to not get back up.  If I am not moving, I am not living.  So even when I lose sight of what I am moving towards, and doctors kick me out on my ass, I ask you, as my friends, to make me get back up! 

This week amongst the chaos of a political transition, and watching all the advocating and demonstrations, I found myself contemplating being an advocate of a different nature – my own. After an initial consultation last week at the transplant center with a specialist, I walked away feeling as though I was not actually heard, or even worse, that my health history wasn’t adequately considered. This lack of communication and trust is no way to begin a relationship.

Starting over with a new doctor is always difficult for me because my health history is somewhat confusing. Being an “outlier,” as I was called at my last appointment, has done a disservice to my recovery because as the doctor put it, “I am not easy.” That is right, Doc. When it deals with matters of my “heart,” I have never been easy. But when it comes to my heart health, that presents a huge problem, because most patients follow the same trajectory of sickness and recovery, therefore that predictability makes treating patients successfully just “another day at the office.” Then walks in me. No preconditions; young with no other health issues; somewhat asymptomatic with mild-moderate limitations; medications not tolerated even at the lowest dosages and no foreseeable progress to recovery. What to do with me? All before did exactly what this specialist has done; order a bevy of tests – most of which I have taken numerous times before.

Per my experience, first the new cardiologist completely denounces all cardiac diagnosis, tests, and any hands that had anything to do with their completion. It is my understanding that anyone who came before was unqualified and that ALL the tests will need to be performed again; the caveat being this time, and only this time, they will be done correctly and the results will be the “true” results. However, most results are consistent with the last.  This specialist made a dismissing remark about my file of 8 years and 5 cardiologists being so thick with test results. Hmm, you think? I should have explained that it simply was a crypt of those egos that came before him; all pierced through and attached for the next ego to judge – “don’t be the next victim.” Not sure he would have seen the humor but I find the metaphor satisfying. I understand that tests are necessary – until they are unnecessary. Tests are expensive, even with insurance. And more pointedly, some tests are invasive, painful or just plain bothersome and embarrassing. Why put me through more without justification other than stroking your own ego? If you think I may be angry by this constant prodding, your assessment would be correct.

So, on par with my previous experiences, this specialist called for tests – tests I have completed before and was provided in his file. I expected it, and was willing to participate in the spirit of searching all nooks and crannies. Not happily, but willingly. I went home that day knowing the following week I would begin with stroking the new specialist’s ego – but also knowing something else, the new tests would show the same results as the tests I took last summer. I hemmed and hawed for days on whether I should say something, even though I wasn’t heard in the initial consultation the first time; or just pay and endure the testing I would take, even without an explanation as to why I was doing them again. My husband listened to my bellowing patiently and echoed my own frustration at the circles we seem to constantly plod along in our journey with heart failure. We have passed this patch in the field before, we both know it, but we also know that part of being a good patient, is patiently waiting as the doctor comes to his own conclusions. No matter how much money or pain it costs us.

My husband and I are intelligent. We stay informed on my health and what the purpose of the testing ordered is; and how a diagnosis will determine our future. We come to appointments prepared, each with our own questions and, we think at least, something constructive or useful to add to the conversation. We are never passive. But this specialist dominated the conversation and didn’t listen to what our experience with MY condition in particular, was. He missed an opportunity to confer with “experts.” Yes, I AM an expert at my own symptoms, what has and hasn’t worked in the past, how my testing has mirrored or disproved my condition, and in general, what it is like to live in THIS body and with MY particular ailment. You would think for someone that says, “I am not easy,” that any additional information would be welcomed. My husband knows this information second to myself, because I am verbal with him on those symptoms and he is actively involved with my health issues. We should be conferred with just as much as any other “expert.” Coming together with a heart failure specialist should be a “meeting of minds” or a meeting of “experts.” This is what makes a healthy doctor/patient relationship and has also proven in medical research to increase the chances of a successful recovery. This meeting was one-sided however.

It is deeply embedded into our society that a doctor’s opinion (especially a specialist) is unquestionable – a wisdom beyond refute. And therefore, we showed respect to the establishment of the transplant center we were at, and of the employees in it. And beyond that, we are southerners, so in everything, we are polite. It is difficult to point out that our experience there was less than stellar. Finding your own voice can be intimidating because you are looking for a solution outside your own understanding in that environment. You lean on your health professionals to search for answers for you. And sometimes of even greater importance, in such a shaky time in your life, you look for “care” in healthcare.

We came to the conclusion that the lapse we had in communication with this specialist last week was too gaping, and really just a “deal-breaker” in building a strong relationship. There are certain “non-negotiables” in my medical care. Not listening is one of them. I mean, I am trusting this man with my very life! My husband is trusting him to save his wife and the mother of his children! As in any relationship, without communication, we have nothing.   The risk of losing my fight because of communication issues, or ego, is too great a price. As this is not a trivial matter, we decided to cancel the tests he ordered and request a different specialist at the hospital. This decision came with some nail-biting as they do not have to assign me a new specialist and unfortunately, this will be viewed as somewhat of an insult. I hope it isn’t, and more seen as an incompatibility issue, but conjecture, his and mine, being just that, who knows? We had to base future results on one meeting, and that takes a bit of gambling and “going with your gut” instincts. So we rolled the dice in the hopes of a better outcome. Only time will tell if it was a sure bet.

When you are sick, you lose so much. The life you once lived is behind you and new “normals” are internally negotiated and constantly tested. The biggest is our loss of ability to control our situation and, not only how it affects us, but also our loved ones. Losing that ability to control your own path is frightening. And having to trust people, such as doctors, that you really have no frame of reference in doing so, even more so. Each time is a leap of faith. I like the firm ground. I know where it is, and I know what to expect. It is concrete (pun intended).  I know I am a control freak; this is what makes putting my life into the hands of another so challenging. But I think I am fair in their assessment. I don’t want anyone to conclude that I think I know more than doctors, I don’t. I don’t presume to. What I do know is when I am being dismissed; when I am considered as an unimportant partner in my own healthcare – and that assumption is careless, if not dangerous.

In this world, we all face times that are simply out of our control. But what we always have control of is how we react and respond to those difficulties.   In healthcare, gaining some control means asking questions, pushing back when you feel railroaded and saying “no” sometimes. Yes, it is scary to do this, and has effectively taken 8 years for me to find my own voice, but what I have learned is that I am my own best advocate – alongside my husband. Nobody wants more than we do for a successful outcome and so we have to trust in our own instincts. And, we have to trust the staff in which we share that responsibility. I cannot trust anyone who cannot take the time to listen. Southern or not, I should not feel like I have to apologize for that. There are times in life to be polite, and to sit back quietly and listen. When it comes to your health, your very life – blush if you must – but protest loudly and unapologetically if needed. If you don’t, then who will?