“COVID-19: How it worked for us” - a guest blog

Becky is my team mate. She lives in Utah. She and her daughter and husband were diagnosed with COVID19 around Labor Day (September 7, 2020). This is her story, in her own words, and what she wants the world to know about having had COVID19. 

September 8, 2020: Becky’s announcement in a chat message to our team that her family has been diagnosed with COVID19 (a day after diagnosis)

All three <members of our family> that live here have coronavirus. (My son escaped to college in time.) We're still trying to figure out what exactly that means, like, logistically. But it's a fair bet that I'll be in and out in a pretty random/sporadic schedule. We're okay, mostly. We don't have any health risk factors, and we DO have health insurance,  but this is going to be a weird week for sure.

September 17: Becky’s note to our team after having been sick for 10 days

<rant> I'm pretty frustrated about this. I made good choices, wore my mask every time I left the house, didn't go anywhere I didn't need to go. It didn't matter, because other people didn't wear masks, and then my daughter brought it home. Now I'm sitting here unable to carry things up and down the stairs or EAT CHOCOLATE because somebody else thought it was no big deal. I would be exponentially more pissed if I or anyone I loved would have actually had a bad case. I 100% support a mask mandate and other nanny state behavior and I wish they would shut up and DO it already. I apologize, and I will not interject politics again.</rant>. 

October 8: She sent me this account privately in a Google doc (a month and a day after diagnosis) 

On this day, I had asked her if I might be too paranoid to still obey all the guidelines and restrictions and to still be very guarded and isolated. She said plainly she will send me her full story (below) and then she added: “In short: you are NOT paranoid!”

People are listed in the order that we caught it. Each person’s story is separate, but in real life we all caught it within a few days of each other, so we overlapped a lot.

One of the weirdest things was that we all had completely different sets of symptoms, although we were all definitely sick. The only thing that happened to all of us was losing smell and taste.

Victoria

Age 17, no known risk factors

Main symptoms: Mostly shortness of breath

Tori was the first to get it. We think she got it from school, because when she went back to school after isolation, someone she sits near in one of her classes had only returned from COVID isolation a few days before. Logically, they would have also had it a few days before her. We wondered if she’d caught it from friends, but all the friends she’d been in contact with had to get tested (because they’d been exposed to her). Only one had it, and he had symptoms a few days after her, so we think he caught it from her instead of the other way around. It’s also possible she got it from work (grocery store), but it doesn’t sound like any of her coworkers had it, and there’s no way to know about customers.

The first day (September 4), she had a fever and felt yucky. Her fever was only 100.something, and it never really got any higher than that. She had some pretty bad muscle pain that day too. She called in to work and they told her she had to get tested before she could work again. So I took her down and got her tested. Results back 24 hours later, positive. She only felt rotten for a couple of days, but she was short of breath for like a week. At one point (I want to say day 4?) she wasn’t feeling so bad, but she was getting short of breath. Her oxygen levels were okay (we had a finger tester) but a doctor friend said he’d probably take her in. I took her to the ER because her regular doctor and insta-care didn’t want us to come in and spread germs. The ER x-rayed her for pneumonia (she didn’t have it) and gave her a prescription for an inhaler. She used it every few hours for a couple of days, then less and less and now I think it’s been more than a week. She did lose taste and smell, but seemed to have it mostly back in a couple of weeks. She says it’s hard to know exactly if it’s all back, because she didn’t pay enough attention before she lost it, and it’s hard to compare and judge. She was 90% better in 2 weeks, and I would say is totally better now (October 8).

NOTE: Of the 6 friends that had to be isolated and tested because they’d been exposed to her, only 2 had gone into self-isolation when she told them they’d been exposed. 4 had to be told to isolate by the health department even though they knew they’d been exposed, and 2 were actively mad at Tori for giving their names to the health department because they’d have to miss work and not get money while they were tested. This is probably why, at least in Utah, cases are going up among young people: because at least some of them are idiots.

NOTE: HOORAY FOR HEALTH INSURANCE AT THE ER

Joshua

Age 45, no known risk factors

Main symptoms: Coughing, headaches

Josh caught it a couple of days after Tori. We think he caught it from her. As soon as she was sick we isolated her, brought food to her room, wiped everything down with Lysol, everything, but it was already too late. He had a cough for a couple of days, but it was so smoky here (in Utah) that we’d just assumed that he was coughing from that. Then when Tori tested positive we thought “uh-oh” and he got tested. He was of course positive, although before we heard back about his test the health department called and said they were going to put us down in the computer as positive anyway since we lived with Tori.

The cough was about the same as a cough from a regular cold. It lasted for about a week. Nyquil helped some. The headache was pretty bad and lasted for, I want to say, 5 days (off and on, but mostly on). The health department said to take Tylenol, but you can’t take much of that. Ibuprofen they said might not hurt, but other articles said it might, so we tried to avoid that. We didn’t have any aspirin. The headache was mostly in the forehead, like a really horrible sinus headache, but his nose was clear. Josh was never short of breath.

Josh was tested on September 7, and went backpacking on September 26, so he was feeling completely better by then. He’d been feeling better for a while, but I think if you go hiking in the mountains and overnight backpacking and you’re just fine, you’re pretty much completely healthy.

Becky

Age 45, no known risk factors*

Main symptoms: Muscle pain, fatigue (sleepy), fatigue (weak), shortness of breath, lack of smell

*My family has a history of autoimmune disorders, but I don’t have one that I know of. Also I should probably mention that my cholesterol tends to be a bit high naturally (despite diet and exercise) but not enough for medication (190s).

This one has more details because it’s the one that I saw from the inside, so to speak.

My first symptom was a scratchy throat. I started feeling it on the day Josh was tested, so I went and got tested even though it was just a little scratchy throat. At that point, we thought Tori had it, and Josh maybe had it, and I didn’t have it, so we were all living in separate parts of the house and not interacting at all. The health department said to assume I had it, and that was nice because then at least we could talk to each other and watch movies together and stuff. Then I got a positive test result even though I wasn’t feeling very bad yet. Then I started to feel rotten. 

I did get the same sinus headache, but only for a couple of days. I was a little bit congested, but not very, even though I apparently snored a lot. I had some bathroom trouble one day. But the main symptoms for me were:

Muscle pain. So much pain. More than I’ve ever had without an actual injury. It was mostly concentrated in my hips and legs, but even my teeth hurt. And it lasted for like five days. Tylenol helped some, but again you can’t take it very often. It just made the pain a little less painful for a couple of hours. Tori said she was in a lot of pain too, that first day, and that her friend also commented on how much pain he was in. It surprised me because for how much pain it was, you’d think it would be in the news more.

Fatigue (sleepy): It’s hard to know where the fatigue was coming from because there was a lot going on. I was sick, which makes you tired, but also I wasn’t sleeping well. The pain kept me awake, and also I was extremely stressed out because we all had COVID. That was the first week. The second week I slept like 12 hours a day. The third week I had trouble sleeping again, but I think that was just stress and bad luck. This week my sleep schedule’s out of whack so I don’t know if I’m still having fatigue or not.

Shortness of breath: This one’s weird, because it didn’t show up until I was mostly feeling better. I was sick for two weeks, then improving for one week, and then the shortness of breath kicked in and I’m way worse than I was a couple of weeks ago. I went to the library yesterday and by the time I got back to the car I was breathing like I’d been running. I breathe hard after gathering up laundry. I breathe hard when playing Guitar Hero. It’s ridiculous.

Fatigue (weak): I suspect this is a side effect from the shortness of breath. I was okay right after I started feeling better but now I’m so weak. I can’t get through a grocery trip without crying when I get back to the car. I can’t go for a walk because it’s hard to get back up the hill to home. If I overdo things, it feels like really low blood sugar or something where you can feel your muscles desperately searching for energy and there just isn’t any. It’s super frustrating for a few reasons. It’s frustrating to have to depend on people to do stuff I feel like I should be able to do myself (shopping, chores). It’s frustrating to be stuck at home because it’s so boring here. When video games are too tiring, all that’s left is movies and needlework. I’m running out of movies, and needlework has its own way of driving you slowly crazy. That’s probably not useful info to you but ARRRRGH I’M SO FRUSTRATED.

Losing smell and taste: You can function just fine without smell and taste, but it’s very weird and surprisingly depressing. Whether we want to admit it or not, comfort food cheers people up, and when you’re already stuck at home feeling rotten, losing taste feels like kicking you when you’re down. Also there was this weird not-quite-smell-not-quite-feeling that was there for the first week or so that was weird and unpleasant. And I was like, well, none of us can smell so hopefully we don’t get a gas leak or anything this week! That lasted longer than any other symptom for any of us, and it came back in bits and pieces, so I could smell flowers, but not cooking meat, and cloves smelled weird because I think I was only detecting some of the chemicals or something. Weird and unpleasant.

I don’t know why I’m having trouble so long after the rest of the family is better. Bad luck I suppose. I have a checkup on the 25th (of September) so if it’s still going on then I’ll find out more. 

Michael

Age 19

Michael left for college on August 19, and didn’t ever show symptoms, so that was a huge relief that he just missed it completely.

October 9: Becky’s note to me (a month and 2 days after diagnosis):

Update on coronavirus in case it's useful to know: I did have to go to the insta-care clinic this morning because my breathing took a turn for the worse. They x-rayed me (I'm fine) and gave me an inhaler and also some pretty heavy doses of prednisone (steroid) for the next five days. I do feel a little better this afternoon, so here's hoping it helps. 

October 23: another update from Becky (a month and 2 weeks after diagnosis)

I went into the ER Friday because I was having trouble breathing and my chest hurt. I probably didn’t need to go to the ER, but I was freaking out. They took another x-ray and an EKG and tested me for blood clots (my mom died from blood clots). That was all fine. The doctor told me I have “Reactive Airway Disease” which is apparently what they call asthma when you haven’t been specifically tested for asthma. They put me on some pills (generic Singulair) and some powder that I have to breathe in (Advair) which are both asthma medications. The good news is that they seem to be working! The doctor said that I’d probably be on them for several months.  I still get winded and tired easily, but I don’t have to lie down nearly as much, and when I’m not active I feel totally fine, which is new and exciting for me.

I asked her if she had ever been diagnosed with asthma before or any other lung disease. She answered: No, I don't think so. I can't remember having anything like this before. I get hay fever sometimes, but I don't think that involves your lungs. I do have a cousin with asthma, but no one in my immediate family has it. I'm just glad the doctor figured out what was going on and how to treat it. I'm not thrilled about possibly having asthma, but it's way better than having breathing problems that I don't know what's happening or what to do, if that makes sense.

December 2, 2020: I asked Becky for an update on this day. This is her note ( 5 days shy of 3 months after diagnosis)

Becky’s been wonderful: she is one of the hardest-working people I know. Incredibly smart, too, and even more, incredibly humble. On the virtual calls we have, though, she always looks very tired. So, I checked in with her and asked her today how she feels and whether the doctors have any idea when her life will be back to normal. This was her answer: 

My doctor said 3-6 months. 3 months is next week so I'm pretty sure I'm not going to make that goal.  If I'm not noticeably better in February I'm supposed to go back and she'll start sending me to specialists. It wouldn't do me any good to go to specialists yet because I might still get better by myself. Personally, I don't know if I will. I haven't made any improvement in a while, so right now it's less "rest so I can get better" and more "rest because this is what life is like now." 

Honestly it's kind of rough, emotionally. I am trying very very hard to be patient and optimistic, but some days that's kind of hard to do. I don't mean to complain. I really don't. I know that other people have it much worse. No one I know has died from COVID, and my sister has MS and has been dealing with this sort of thing for years. But I don't love it, and I wish people would understand that this is just not worth the risk. I do have LOTS of support, so that's good. I have no idea how I would cope if I was alone.  

... it's been nearly 3 months, I'm still on Advair and Singulair, and I'm still only able to walk around the block, and not even every day. If I do more than that it's a bad time.  

I thank Becky tremendously for letting me share this with you all and I respect her courage for fighting this, as well as her selflessness for sharing herself so kindly, honestly, and thoughtfully with the world. She is my hero! 

Much health to you, Becky, and thank you, again, for the gift you have given us of your story. 

The Thankful Heart

On February 11 of this year, they split my chest bone in two with a saw. They then found my heart underneath and stopped it, right after hooking me up to this machine which took over the job of my heart and my lungs. They then cut my heart open. Then, they froze me to trick my brain into not needing too much oxygen, and then, they cut off my ascending aorta right out of my chest. After 12 hours of more work on and around my heart, they made my heart beat again. After 12 hours, I came back amongst the living, with a beating heart. I was dead, really. And then, I came to life. To say I am thankful for this would be the grossest understatement. But I am.

Today is Thanksgiving . It seems like a great day to pause and write down just how grateful I am for this crazy roller coaster year.

Anything after February 11, each breath of air, each step, each warm shower, each bite of savory food, each soft paw of a kitty that I got to touch, each amazing sunset and sunrise, each hug of a loved one has been nothing short of amazing and each a bonus. It's like Christmas morning about 200 times a day, every day. I am thankful for that.

I am thankful for medicine and the progress we have made there to keep people like me alive. I am thankful for my amazing surgeon who knew how to kill me gently and bring me back to life, in more or less one functional piece. I am grateful for God for giving me the strength to take one day at a time and build myself back up from physical ruin.

I am grateful for my mom, who, in the midst of untreated COPD fits traveled 5000 miles to cook a pot of soup for me. I am grateful for my sister who took time off from work to wait for hour by hour updates about my surgery. She then came down to make sure “I move the same way she remembered”, once I was a bit better. Her thoughtfulness was healing. I am grateful for my friend, H., who stopped in the middle of her July 4^th vacation to come and see me, to make sure I am OK. I am grateful to my mother-in-law who rallied up a group of strangers to me to form a prayer group. They prayed every week for my health. They still do. The benevolence of people humbles me. 

I am grateful for my customers, co-workers and friends who wrote, watched the emails closely to get updates on me, and sent cards and gifts. With each one, I felt a little bit less alone; a little bit more encouraged.

I am grateful for my nephews, and their facetime sessions. With each one, they give me a reason to live and push on. My family has been my rock. Without them cheering me on and listening to my crazy stories, I would have been a depressed puddle of mess.

I am grateful that my company allowed me to move into a job I have dreamed of all my life (I finally have “writer” in my job title), at a time when I needed it the most.

I am grateful for this … whatever it is … that keeps me going, one foot in front of the other every day. This drive, or lust, or meddlesomeness that drove me to see new and interesting things this year, even when I was ground bound: like Hemingway's last home town of Ketchum, ID, and two glorious National Parks that left me in awe, Canyonlands and Mesa Verde.

Through worry and tough days, I have learned to live (I am still learning) with my newly rewired heart, which is still taking its sweet time to find a rhythm inside of my newly put together chest. I am grateful I am sitting here, writing this, more than anything in the world. I am grateful for the promise of tomorrow, but more than that, I am grateful for the present. Every second of every day, every breath is a gift. All wrapped up in the most beautiful package you have seen. Small little gifts, seconds are.

Maybe more than for anything else in the world, more than for my own life, really, I am grateful for my husband. This man does not know the word “no” when it comes to me. He is the most loyal and loving and giving and selfless human being I have met. He washed me, fed me, massaged my numb arm, religiously, every night for nine months straight now, and allows me to lean on him, unconditionally, every day. He is my peaceful shore, where I rest when life gets too crazy, and life has won the crazy record this year, for damn sure. There are no words, really, to express the love, and breathless thankfulness I owe him, every day.

We have a saying in Romanian: “Sanatate. Ca-i mai buna decat toate.” It means “Health. Because it's better than everything else.” This should be the slogan of this past year. And for the fact that I have been given sickness to learn from and health to appreciate life, I am grateful.

In Honor of FH Awareness Day. And Because Media Lies.

Tomorrow is 2016 FH Awareness Day and in honor of this, I have a confession to make. To some folks this won't be any kind of news, but to others it might. I have not previously mentioned this on this blog: I have FH. That is short for 'familial hypercholesterolemia' and a lot easier (and faster) to spell. You can google it and choose your own source to find out what exactly it means, and I encourage you to do just that.

In short, it's a genetic disease that causes very high levels of cholesterol in your body. It does not matter what you eat or what lifestyle you lead; because of this genetic mutation, your body (your liver, most precisely) produces more cholesterol that needed. And there is no mechanism (as in normal people) for your body to get rid of the extra fat, so instead, it stays in your blood stream, and over time, it deposits inside arteries, or your organs' surface (like your liver and pancreas, or even inside your eye), or sometimes on your skin, in big, white lypomas. Whatever it deposits on, it causes havoc and malfunctioning.

This disease is not as rare as you'd think – it affects about one in every 250 people worldwide. Now, I have 270+ friends on Facebook, and some of you have triple that number, so you do the math. It's a genetically transmitted disease, so if you have it your kids and grandkids will likely inherit it. Even if they don't manifest it, they are carriers, and their kids might have it, too.

I decided to share this with you all, my extended network of friends, as I have not done so in the past, just to create awareness, and not to panic you or to cause you to run screaming for the doctor. I wanted to do this for your own knowledge, which I firmly believe is power, and for your lives and the lives of the ones you love.

Why now? Because a lot of things (good and bad) have happened recently. But let's not jump to it. I'll explain it all.

I have lived with this disease since I was born, but I didn't know about it till I was 8. Knowing about it that early in my life has helped me get to the right doctors and to the right medicine and has helped me be alive today, really.

Just to give you an idea – your normal total cholesterol maxes out around 200 mg/dl. Mine was 790 mg/ dl when I was 8. If your cholesterol is high (and if you don't have FH it can never be this high!) your doctor will tell you things like: lose weight, stay active, quit smoking, eat low fat, or “good” fat. This are all good things for all of us. Unfortunately, none of these things apply to an FH patient. Even eliminating all fats, not ever being overweight, not ever smoking, and being active would not help an FH patient at all.

One of the main reasons I want to speak about this is because of the bad rep that cholesterol has gotten in the media recently. I have come across uncountable articles, some of them from reputable sources where alleged medical spokespersons say that cholesterol is not bad for you, that carbs and sugar are bad for you, that it's all an invention of the food companies alongside pharmaceutical companies to sell us more sugary stuff and more Lipitor (one of the more popular cholesterol drug).

I agree that if you do have a normal cholesterol metabolism and you keep an active, nutritionally diversified and balanced diet and a 'clean' life, then cholesterol in the foods we eat is not intrinsically bad for you.

I have also read articles that try to convince people that cholesterol is not, in fact, one of the major causes for the number one killer in the nation (bigger than cancer), heart attacks, and of strokes. This is actually severely flawed. And I wanted to make sure you all know better than this.

I can only tell you what happened to me and my family, and that is: cholesterol kills. And before it kills, it messes you up! My grandfather on my dad's side died after 12 years of being paralyzed as a result of multiple strokes, all caused by cholesterol and plaque deposits. He died at 62. All his brothers and sisters died in their 60's or younger of either strokes or heart attacks caused by blocked arteries. My dad's sister has had stent surgery to open up blocked arteries in her legs in her early 60's. My dad needs to have the same surgery and has had coronary artery disease for many years now. He is 64.

As most of you know, I have had an overhaul of a surgery this year, that replaced my aortic valve, my ascending aorta with man-made devices and repaired four blocked vessels in my heart (that is a quadruple by-bass surgery, y'all). I also had a heart attack this year, after this surgery. I am only 41. My surgical team was floored at the state of my ascending aorta. Your aorta (and any artery, really) should be flexible and fibrous, like a soft cotton tube. Mine was like a PVC pipe – rock solid, and if they knocked on it, it would shatter. Two of my three leaflets in my aortic valve were calcified shut and the valve was narrowed. All because of cholesterol.

I have been on medication for most of my adult life, but with a genetic disease, they only can help so much. There is no cure for this. All you can do is hope, live your life to the fullest from one appointment to the next and follow doctors' orders, to help your body live with this. And stay informed on what is next. This is what I follow in my 'other' blog which I am sharing with you below.

What you should know if you have this disease, or if you're curious about finding out more:

There are some resources I'll share with you here, that will explain more, but basically:

if you have unusually high cholesterol that will not go down with regular diet and exercise, start getting suspicious and order a cholesterol check at your next physical appointment. Also, interview your relatives and find out if they have something similar going on. If you already have a factor that predisposes you for heart attacks and strokes, be doubly aware of your cholesterol level and intake of it in your foods.

I am not saying this now to panic anyone, I just want you guys to be aware, because you're all important to me.

And now, for the full disclosure:

I have written this blog, called “Living with FH (and Heart Disease)” for about 5 years now: http://livingwithfh.blogspot.com/ . You're welcome to follow it, or if it's easier to follow on Facebook, you can “like” the page and follow it there: https://www.facebook.com/Blog-Living-with-FH-and-Heart-Disease-859449370774490/?ref=aymt_homepage_panel . It's not terribly riveting, but it is a pretty accurate documentary of my 'medical' life, if you will.

Starting this year, my blog has been a feature feed for the FH Foundation's website, which is a huge honor for me. I encourage you to start your research on their site – they are doing an amazing job to raise awareness in our communities about this disease, and to save lives.

Their site is: https://thefhfoundation.org/ . If you navigate to their News & Blog section, you'll see my blog linked there, as well: https://thefhfoundation.org/news-blog/ .

I wanted to share all this with you, to celebrate FH Awareness Day tomorrow and to celebrate the new lease on life I have been given time and again only because I knew. I hope you will read but most importantly share this with people you know this information might help.

If you do have questions or don't know where to start, I hope you email me and keep me posted.

Happy FH Awareness Day, y'all! And happy health!

From Chrysalis to Butterfly

“It’s no use going back to yesterday, because I was a different person then.”
― Lewis Carroll, Alice in Wonderland 

Have you ever watched a butterfly come out of the shell of its chrysalis? I mean, really watched it and really saw every single little detail of what happens? It's not pretty.

First, there is some oozing and “bleeding” and goopy stuff comes our, as the chrysalis cracks open. Then, the butterfly pokes a little bit at a time from it, first one antenna, then, another one. Then, a foot, then, another one. Then, the tip of a wing, and then another one, till it frees itself up from the straight jacket it's been in, which all of a sudden is no longer big enough for it.

But even when it's free, it's sort of in a shock. It just sits there, a little wobbly, kinda trying to figure out for itself what the heck happened and how it will be supposed to move and function in the new body it just got. It will look dizzy for a bit, a little shaken up, still with goop all over it, maybe still a bit in pain from the birth, but it will try to move about and try to find its new feet.

Like I said, wobbly at first, shaky, but pushing through it. It won't be for a little while till you see that Monarch spreading wings and taking off on its own. And it is what's it supposed to happen.

Although the drastic transformation is mostly internal, this is kind of what coming out of heart surgery feels like. You go in as you, no doubt (just as the larva thinks it goes in as itself). And they take you away in this … room you only heart about afterwards, because you won't remember… They, then, completely transform you and then, when you finally come to, you start noticing how much your body has changed. And you have no idea what's inside, either!

It's not pretty, at first. When I came to, it was probably 2 AM on February 12, in the ICU, and all I felt was thirsty. I never crushed ice in my teeth before, but then, it's all I wanted to do. I noticed a scar on my lip, scabbed over – I figured from the breathing tube I had in me during surgery. Then, I noticed my right arm had a brick taped to it with catheters going into my wrist. Then, I noticed I could not feel my left arm and leg. I said all these things to the nurses who were hovering over me around the clock.

I asked a lot of questions (the butterfly would, too, had it had a voice, I am sure of it!). I had no idea what happened after I had fallen asleep in the anesthesia room the day before – I asked if I had a stroke (no), if they did circulatory arrest on me (look it up, it's fun – they freeze you up so your brain won't eat up oxygen) (yes), I asked how long was I in arrest (38 minutes), if they fixed my heart (yes, 'I had a looong surgery' they said), if my husband was there (no), or the surgeon (no) – it was 2 AM and they had a long day, so they went home. I didn't ask what they did to me, but the nurses volunteered that information: my surgery was very complex, and very long (12 hours); they replaced my aortic valve, my ascending aorta, and they did a quadruple bypass surgery. I remember being scared: “Oh, my God, I have so many new and moved around parts in me! How will this all work?!”.

Then, the next day, I started feeling more and noticing more: three catheters in my neck, four tubes in my chest, another catheter in my bladder, bandages around my left leg, bandage on my chest and lots of scabs and lots and lots of bruises: my whole left leg was blue, my groin was blue, my stomach, too. I was an experiment. Will I ever come out of this? Will I ever heal? Will I ever come out of this bed?! All I wanted was ice – this is as far as I was thinking.

But I did come out. After 2 days in ICU I took my first walk and ate my first half of a banana and 4 grapes. After 7 more days of pain and grumbling and more tests, and even a random heart attack, just for safe measure, all in the regular hospital room, I got to come home, one chest tube still in me. I got to be driven home in our own car, and sleep in my own bed that night. Well, “sleep” is a metaphor for “laying there all night staring at the ceiling and whining in pain”.

After coming home, the process of breaking loose into my new “me” started. I was the same person, but my body had to learn a whole lot of new tricks to be able to get around. After two more weeks, the chest tube came out. After a month from surgery, I took my first nature walk and started shooting (camera, not gun) again. After 6 weeks, I drove for 10 minutes again. I thought it would feel freeing, but it didn't. It felt painful once more. After 7 weeks, this week, my cardiac rehab will be done. I built up endurance to walk up to 45 minutes at 2.8 mi/hour. I started (with the drainage tube in me) with 8 minutes at 1.8 mi/hour and I was sure I was going to heart attack again on the treadmill. But I didn't. I did all these in my new body, with new limitations I had no idea that were possible, with new pain, and new sensitivities everywhere. But I am not stopping. You can't stop once you're up straight.

I have two out of countless scabs still hanging onto me. The bruises are all gone.

How do I feel looking back?! I feel speechlessly lucky and breathlessly humble! After all that I just told you they did to me while I was asleep, I am alive, you all! I am breathing! I eat and lay down, and walk and hug my cat and my husband and I have my brain all here with me. Now that the strong drugs are long gone (gone with the tube), I am, in my head, the same person I ever was before. Hard to believe they drained my body from all the blood, moved it to a machine and put it back in me, changed the course of my blood stream, froze me, for crying out loud, and then put me all back together again to make me look to you all as me again.

How does that not just wanna make you cry?! I just want to hug my surgeon till I die and thank him forever for this. I don't know how many years I was given with this, but I am grateful for today. I am grateful that I kept my brain and that my previously clogged up vessels can now function and pump life giving blood to all my body. I am grateful that I get to see the sun every morning, still. I am in awe!

Just as yoga taught me a billion years ago, the hardest part, really, of all this was quieting down my monkey mind. I am born to be a control freak. So, my nature is to always put my mind in control of anything that happens to me. But with this, you completely have to relinquish everything (your body, your functions, your freedom, your health, your brain … everything you are) to strangers, and let yourself go down that slippery slide. You must trust them (and boy, what a lesson this is in trust!) that they know what they're doing, and trust God that He'll bring you back. After that monkey climbs down from your shoulder, and walks away, you can, too walk into the hospital and volunteer yourself for this life giving surgery. This body stuff, these pains and limitations, these are easy to manage – I am back in control now, you see. But the hardest part was that letting go, closing the eyes and letting the doctors transform my heart to prepare me for my rich, beautiful life to come.

Right now, I feel like the butterfly who came out of that shell, but it's still trying to figure out how it all works now. I am still wobbly. I still need help doing most of everything around me, but I can do more every day and definitely more than chew ice, like that first night in the ICU.

One step in front of the other. Just like the chrysalis doesn't kill the butterfly, it just makes it better, prettier, different, the surgery didn't kill me, much, much to my surprise. It didn't make me prettier on the outside (sorry, all), but I hear it did make my heart prettier. All I know is that it's beating and my surgeon thinks “my heart has completely no murmur (music to the ears of a heart patient who has been used to the murmur for 15+ years now) and my lungs are gorgeous”. I'll take that as inside beauty for sure.

One day, slowly, I'll grow into my wings. One day, I will fly again. For now, I am figuring out my limbs, two of which are still numb. Still, I am in awe of this miracle that the human body is and of its power to regenerate, transform and keep going. There is no way there is not something magical, something we cannot explain for ourselves, something beyond out ability to comprehend in this world to make us come back from something like this! No way!

Good to be back!

   

Before - the morning of the surgery as I was taken into the anesthesia room.

After - a month from surgery, walking on a nature path.

The Detour

When I first started this blog, it was supposed to be, I think, about my life in travels. Because I have always seen myself as a gypsy, because I have always lived away from people dear to me, which always required travels, because, for some reason, I have always been in love with things that are far away from where I live (England when I was in Romania, the ocean and the mountains when I lived in the foothills of North Carolina, Montana, Arizona, California and Colorado, now that I live in Utah), I pretty much knew that if I were to tell a story about my life, I would tell a story about my travels. 

I sometimes forget places I ate at, foods I had - all I remember is that they were memorable enough, so I come to the blog and re-read my posts to remind myself of what was. I always thought I'd keep this travel diary to remind my old age mind about where I have been all my life. I kind of look forward to each year's travels, in January, because I can see the new pages I'll fill up with stories, people, pictures, foods, smells, music ... 

But this year is different. This year, we'll step aside from the nice, lovely, straight road, and we'll take the grassy road that wants wear and go on to have our heart surgery next. That will be followed, if all goes well, and all should go well, by a long process of recovery and rebuilding my new body, with new heart parts in it. A new valve. A new part of my aorta. Some re-positioned blood vessels to bypass the sick ones. You know, old age "stuff". This is what this year's posts will be about, along with how I get out and see the world during it all.

I have struggled in the past few  months with the overwhelming severity of my condition, the risks, the possible complications, the strange state I live in and the scarce amount of good medical care. I have been at the very bottom of the hope bucket. I have cried, and been depressed and sad, and feared for my life. I could not bear the thought of not ever seeing my family, my husband, my life as I know today ever again. 

But knowledge is power. I talked myself into learning and researching, meeting people like me online, researching the best surgeon possible in this darn state. Love is power, too. I have been listening to people who know and love me and who pulled me back to the shore from my deep, deep waters of confusion. And you know I needed help, 'cause I can't swim. 

So today, only a bit over 12 hours before surgery starts tomorrow, I am ready. I am ready for this, as I have never thought I could be before. I don't know much about medicine and what my body will decide to do during the surgery. I don't know much about God's plans, either. I just hope He agrees with mine. But I do know that deep in my heart, I am not ready to end it here. As I have mentioned in my previous 2 posts, I got stuff to do! I am ready to start plan it, just as soon as this surgery and its recovery is over and just as soon as it's safe again to be out there. 

This is not sad, to me. I am grateful, because this condition, for now, is fixable. I am grateful that I have a surgeon who gives hugs and tells me the truth about everything, no matter how bleak, while cheering me on that I can do it. I am grateful for friends and for my rock solid husband who will not let me fail. I know this. 

I am hopeful and ready. This is my big detour. That is all. Sometimes it's necessary, you know. And as the poet knows, and we know now to be true, "that will make all the difference". 

Talk at you folks, in some time. But we will talk! 
 

From Hatred to Love. And Hope.

“As the soil, however rich it may be, cannot be productive without cultivation, so the mind without culture can never produce good fruit.” (Seneca)

Before you start shooting now, just remember: the last words here are “love” and “hope”. So, it’s all good. And I am now all reformed! Or about to be.

So, I used to absolutely hate NPR! I know, I know – but remember: no shooting, yet. The slow pace of the reporting, the old voices, the sentiment that their topics are always so serious, so grim, so dry. No “juice” coming out of NPR. No sensationalism. Just pure, dry enunciation. I could never really fully admit that the topics were as much “boring”, but I had zero patience for the style of reporting they do. So I would nix the station simply on the format with no regard to the substance!

All this changed when I moved to Utah, and my commute has bloated to more than an hour one way, at times. The radio options are pretty slim here. You have a couple of “standard” FM radio stations, classic rock, country, this-and-that “new” music, and your local talk radio, which is owned by the LDS church – biased, misinformed, sensationalist, predicting the end of the world almost every half hour and totally embarrassing, at times.

But luckily, there is NPR. One day, forced into a corner by all the poor choices on all the other stations, I switched to it on my lunch break, which I took sitting in my car, at the time. They had an author on, Janet Reitman, talking about her book “Inside Scientology: The Story of America's Most Secretive Religion”. 

That was the first sip of the kool-aid in this dry media desert. I was hooked – by the information, and depth of the discussion and by how much more informed and enlightened I felt. I could not go back to work! I was in a trance. 

Almost a year later, after listening to many a programs on music, communism, mating of snails, politics, contests of livestock auctioneers, Kosher food, a variety of social discussions, I can say I am quite getting used to this little gem of programming speaking softly, and still slow, from my dashboard. 

They are sometimes biased, and a little annoyingly conservative, at times (after all, they are human, and Americans, you know!), but they keep it interesting! They tackle topics that scholarly college professors would tackle and you feel a bit elated by rising above the ordinary with their observations on people, life, religion, etc. They keep me learning! And boy, I have so much to learn, still – as we all do, of course! They keep the Alzheimer’s away (I hope), as they challenge my attention, my opinions, my brain. 

I am not in the mood for it all the time, as a true fan would be, but I always feel more intelligent (really) after I listen to them. And I keep coming back, every day, as to my supply of “smart pills”.  

I love that they use good grammar and full sentences, that they say “I have given” instead of “I have gave”. They use words like “connubial” and “bacchanalia”, which were so dusty, back in the back of my gray matter, somewhere. I smile, drive along and feel a few minutes, a few words smarter. I am finally so happy that they are there for me, to fill my empty commute time with interest, culture and insight. Man, how we need this kind of solid, timeless education for our young folks! Away from the poisons of today’s cheap and cheesy entertainment and reality junk that ruins our society! 

One thing that still puzzles me: NPR is sponsored, amongst others, by … The Poetry Foundation.  First question is: wow! In the era of The Jersey Shore, in America, we still have a poetry foundation, and apparently, they have money?! The second one is: do they have enough to sponsor anything?! One art supporting another tells me that all might not be lost in the human world. At least not yet! 

Medical (Mis)Treatment

We love to talk about freedoms and liberties in America. We fight for it, we love our freedom, we cherish it, it’s our highest ideal and wish death on whomever attempts to threaten its existence. But man, I never feel more deprived of this freedom than when I attempt a very routine visit to the doctor’s office, in this day and age!

Now, I have been a patient pretty much all my life. I know, we all have been, at some point, but I mean, I have been forced to be a conscientious, very loyal and regular one. And trust me, I am no hypochondriac nor do I get great enjoyment out of it. I go out of necessity. So, you may call me jaded, also – go ahead. I still want to say a few things about our medical (mal)practice.

Lately, it’s more restrictive to go to the doctor’s than it is to fly, which is hard to believe some days. Every time you go in the office, there some new restriction. And while some restrictions are meant for your safety and accuracy of service (like, fast before labs, wear no jewelry before you go under, wear tennis shoes on the treadmill, etc), others are complete bogus infringements to your time, honor and wallet. Complete disrespect for you, as a patient, or as a human being.

You have to provide an insurance card for every visit - why?- if there were no changes from the visit from yesterday, I am not sure; you have to provide a photo id, or else you’ll not be seen. I wonder how many people impersonate someone else, and know exactly the name of the doctor to see, the time to be there, the name and date of birth of the patient meant to be seen. Hhmm …

We’re so afraid the governmental health insurance plan will be “too bureaucratic”?? Are you kidding me? Our very own doctor’s office has bureaucracy down pat! Think of all the forms you fill every year, over and over again! The amount of data they have on you: everything from your address, social security number, credit card account, names of the closest people to you, and their phone number and these have nothing to do with details on your body and your health and condition!

And how about all those copies of all those insurance cards, about 20 times every year?? All that paper trail in a day and age when we’re all paranoid about stealing identity and saving everything encoded and password protected on computers so it won’t be accessible by human eyes?!

Then, on every wall inside all the little waiting rooms you’re a prisoner in, signs warn you vehemently: “Don’t call us for the lab results. We’ll call you. In two weeks”, “We will charge you anywhere from $35 to $55 for each form you need us to fill out” – and then, they have the gall to tell you why: “because insurance companies don’t reimburse the cost”. It’s all about the bottom line, isn’t it??

And that brings me to the other issue: I feel blood sucked and robbed blind every time I walk in there – and that’s to put it mildly. I would invoke violent sexual acts here, but class keeps me from doing so.

If I hear one more person telling me “well, doctors have to pay those huge student loans, so, that’s why they charge so much” I am going to puke! Ppphhhlleeeaaasee, people! Do they also have to live in million dollar homes? And go on a Mediterranean cruise every summer? And marry their only daughter at The Biltmore? And drive BMW’s and have several vacation homes?! I am sure they don’t have to do all those things, but well, they do. I don’t see them living in regular folk condos and shopping at Wal-Mart to pay the loans they got themselves into, willingly, either. And I am not saying all this because I am jealous, God no! But somewhere, there has to be some justice and some middle ground between people losing all they’ve got to get healthy and people providing healthcare and getting ever so richer that it’s blinding to the rest of us. I know capitalism isn’t a fair structure, but the gap is widening every single year. It’s hopeless!

And I don’t know about you, but I have a problem with paying the same amount of money to see a Harvard educated specialist and his Nurse Practitioner! Practitioner or not, she is a nurse! I am sure their “student loans” don’t compare! They can’t, possibly!

And that brings me to the next point, of the quality of care. In the heated and very actual debate of governmental health care system we’re witnessing today, we all hear about “the quality of American healthcare”. We pay the buck, but we’ve got the best! Again, if someone tells me that one more time, I’ll regurgitate!

Let me give you just a for instance from a recent visit. I meet with my general doctor for my six month follow-up. I get about 15 minutes every 6 months of his very expensive time, to look at my recent blood tests, and send me to some more specialists in search for a cure. No, he doesn’t provide the cure, he directs. 15 minutes.

So, this last time: he’s in the room, after 30 minutes of me waiting, of course, for about 2 minutes, while the phone on the wall rings. And … he answers it. It turns out, someone from the hospital paged him, so he can answer a question about a patient of his who is admitted. So, I am on the fence: I am not sure whether to be mad, that he’s using MY time to answer another call, or happy, that he actually cares about his most sick patients and doesn’t send their calls into voice mails, and answers them right away. Still a little uncomfortable. When he’s finished with the call, he doesn’t remember what I was saying, and picks up another train of thought, completely unrelated.

Now, I am mad.

I reiterate, and he nods, and approves. And doesn’t say much. When, I notice he reaches in his pocket and pulls out a black “genuine leather”, black case. While I am talking about, oh, unimportant things like my heart, my overall health, my lack of sleep, and lack of appetite, he’s fumbling to open the case and he does open it: it turns our his IPhone vibrated just then, and he has to look at it. And he doesn’t answer it, but he scrolls and reads an email or a text message on it, while chuckling to himself. (!!!??????!!!!). I am talking. He stopped acknowledging.

Finally, he changes directions and topics on me.

Now, I am madder!

And at the end, off he ships me to the specialist! Gets from me (+the insurance) his fee for his New York taxi on his trip for Thanksgiving, and off I go. And this is a doctor that was recommended to me by another doctor I like, as being “a good listener”!! I rest my case.

Another example of “pristine” health-care comes from a nurse. She coaches me for an approaching test, and she tells me I need to stop my medication before the test for 48 hours before the test, evidently because that’s what the manual for the test tells her. I assure her that this is not possible: the medicine comes from the pharmacy with a big, red label telling me I cannot skip dosages, not even ONE, and if I do, I have to head to the first pharmacy for a dose, or contact my doctor immediately, or else I am in trouble. She swears to me that’s what I need to do: stop it cold for 48 hours! Then, she “gets caught” by the doctor that she misinformed me, and calls me back: “well, because your dose is so high, and you need it in order to function, stop it for 24 hours at the most and take it immediately after 24 hours – don’t skip more”. Well, thank you for not killing me there, Ms. Nurse! Much obliged. I wonder what would have happened if that doctor was distracted for a moment by the phone email … Fortunately, he was the specialist, without an IPhone! It’s all the luck of the draw, isn’t it?!

I could write books (as in plural) about misinformation from the doctor’s office – everywhere I have been in two states. Tests done uselessly, just to get the money: why is a pregnancy test necessary or else the visit doesn’t continue, when you have not had sex in a year, pray tell? So, I am not believing one iota of this “amazingly qualitative American healthcare”. I can’t. Because in 11 years, I have not seen it. I have lived the non-quality, superficiality, and abuse of it, yes. Every visit provides that!

I am not saying that all doctors are like that. And that all practices are like that. I have met honest to God doctors who care about the patients, and will do anything for their wellbeing. Doctors who love what they do more than the mansion they live in. I have had a doctor, here in America, that risked being fired and was brought to face the Board of Directors because she was seeing me for free, while I had no insurance and had a very severe condition that needed treatment. She was supplying me with samples of the medicines I needed to be able to survive. The two doctors I most respect for their attention to their patient and for their love of the trade, quit working for a regular practice and are now working for Health Serve. So, because I am not homeless, I can’t see them anymore! But those are the doctors I bow towards and respect. Not the ones with the villa in Palermo! And unfortunately, those are fewer and fewer, and regular practices the general public has access to have them as extreme rarities. I can myself count three out of probably 50 I have seen in 11 years. That’s not much!

And this was also not meant to bash all the American doctors. I know for a fact Canadian, and German and Romanian doctors have their faults too. But they were not the topic here. For the sake of (some kind of ) brevity, I have addressed here solely my experience with American doctors. After all, those are the ones most of you are more familiar with.

And just our own American comedian tells us, “just for once I want to tell the doctor: you know what: "I am not ready for you, yet!” Now, that would make it fair, don’t you think! That would make it equal, fair and free for all. But it’s not the way it is, unfortunately!

And for some comic relief in (what I see as) a desperate predicament, enjoy the video and remember: “there is a little bit of arrogance in the medical community, I think we could all live without…”.

A Weird Weekend or ... More

Observations in a stranger that usual week ...

I am one of those children who, according to my mother, "judges" her parents. I don't think it's judgment, but I have always questioned their doings. In a way, I think they (the parents) got what they wanted: they taught us to challenge everything and not accept what is. They didn't specify they were exempt from this.


I say this now because I never understood, for instance, why on earth my mom would buy whatever fruit there was in season in industrial quantities to make canned goods with. She slaved for weeks in the kitchen, every single of the four seasons we have back home, to make hundreds of jars of preserves, marmalade, juices, spreads, and you name it. We had pepper spread, and eggplant spread, and cherry, and sour cherry, and walnut, and strawberry, and blueberry, and wild strawberry, and peach, and apple preserves, and tomato sauce, and tomato juice - hundreds of jars of them. Sometimes we ate for years from the same batch. Her fingers would turn various colors when she was canning, because she had to clean and pit and manually mince the fruit before cooking it - so her hands were red, or green, or black, or orange, or purple, depending on the fruits. How was she not embarrassed to go to work like that?! I never got it. We could afford the things in the store, why would she have to go through all that labor for food we ate once or twice a week??


I never got it, till this weekend, when my fingers turned orange, as I peeled, seeded (yes, they can have seeds, too) and cleaned my first batch of mandarin oranges and made my first jar of preserves. I look at my hands and I smile: I miss mom, and I wish she were closer so she can taste my preserves and tell me how much I suck at making it. I love it, though. It's like no preserves I have ever bought in any store, or country fair. It's so much more flavorful, and so much clearer than the stuff you buy in store. It also tastes sweeter because it's my mom's recipe. And you know what: I am not embarrassed that my hands are orange. If anything, I am proud!

*

I am reading a great book this week: "My Stroke of Insight" by Jill Bolte Taylor, Ph.D. What a life changing book for me! Stroke and I go a long and unhappy way back. Stroke and I, I feel, will revisit each other in the future, as well. Being close to stroke patients, and brain-diseased patients, I have always been fascinated with what exactly happens in our lives, in our body-lives, when the mind goes, fully or partially. I've always known what it feels like when your body goes, but your mind...?! To read about this kind of experience first hand, from a brain specialist is such a gift!

It's a great, loving, compassionate and easy read; one that, I think, anyone with any nerve for human empathy should read. It's a book that I have probably waited for all my life. It's my escape from the world of "crazy" as I am calling it lately. It's simply beautiful.

*

I am trying to convince dad that Obama is not a liar. So far, it's not working so good: I'm doing a lot of convincing, and he's doing a lot of not listening to me. It's the first time in my life when I actually give a darn about politics. It's odd! Not sure it'll last.

*

Ran into a former co-worker that I think the world of. She's great at what she does, and she does it with ease. On top of being a kick-a^^ professional, she's just a cool person, with a great heritage, awesome taste, talented, and unique in every way you can imagine. She now is looking to become a yoga teacher, and she's great at that too. I asked her, would she make yoga her full time job, she says: 'Oh, no! That's my hobby! I am waaayyy too non-committed for that. That's a huge commitment'. Hhmm... That was odd. I would have thought that going through the teacher certification program, and through the exams and all would have been huge in the first place. She went through all that, and now, she's shelving the degree?! Why? I was puzzled. True to herself, however, she never ceases to surprise.

*

Drove down Aycock Ave in Greensboro, NC this Sunday, and saw this tall young gentleman that looked like a poster guy for an ad for Scotland: kilt, socks, hat, ample-sleeved shirt, bag across shoulder, a lllooooong goatee, down to his belt almost, carrying a Starbucks paper cup and walking the street. Now, if this were New York City, this would have been just another passer-by. In Greensboro, NC, though, it made for an interesting sight to say the least ...

*

I "broke up" with a "friend" that I have known for over 7 years now, this week. A friend I trusted, and I opened up to, just like I do to any of my friends. There is a time, unfortunately, when we have to "clean up" the "friends" files, and really bring them up for a yearly review: are they still doing their job as friends, and if not, can we fire them?! It's a mixed feeling of sadness and freedom when this happens, but deep down, we ought to know that a friend we lose this way is not, really, a friend worth keeping, is it?! The sad part is still there, however, because those times we did think we were friends, those hours, and dinners, and chats, and Christmas present sharing are lost forever.

*

The unthinkable happened this week, too: I got excited about television! I typically don't care for tv much. I sometimes wonder if the tv still works, because it's not turned on for days. I remember a co-worker saying in the office, about computers: "Them electronics don't like it much when they're not turned on for a while. One day, they'll just quit!". But this week I switched from regular basic cable to the lowest package you can get on Direct TV, and I love it! I love the remote, even, the picture is clearer, and I am just in love with the new bill! Yay for savings! Now, don't get too excited: the tv craze won't last - I promise you!

*

The most beautiful and simple thing I have heard this weekend, a true "a-ha" moment, was during my yoga class on Sunday afternoon. My favorite instructor, Terry, always encourages us to know who we are and learn to love what we are, and never chase for what we think we should be. I know this sounds pretty common sense for some, but some people, especially in a yoga class, will look around and see if someone else is "screwing up" worse then them; they're there for a competition of bending or something, not for the pure pleasure of treating their body well. So, Terry said something so simple, and yet so deep, I thought. I am not sure it belongs to him, or he read it somewhere, but ... he went: "We didn't all come here, in physical form, to do what somebody else says. We came here for our own experience."

I have been telling people, not in those very well organized words, the same thing about living with a life threatening disease for years: just because my life is different than the "norm" doesn't mean I am living a lesser life. I am living it still to the fullest. I am living it to my fullest, that is. And that's all that matters.

*

The weirdest thing of all is that the moon got drunk, or high, or something on Sunday night. Or maybe the camera did: I tried to take a regular night shot picture of a gorgeous (and close) almost full moon that night, and this is what I got:



I have never done drugs, but they tell me this is what you see on some of them, if you were to follow a lit cigarette waved at you. I did nothing different in my settings, other than moved the camera too soon, I guess ... However, this will be forever filed under "The Moon Got Drunk One Night" in my pictures folder.

*

My parents' 35th anniversary was yesterday. Happy anniversary, mom and dad! And I always wonder - no, not judge, but wonder: how can two people that practically yell at each other 24/7 make it this long?! Now, I don't care what dad says - he will tell you there is no such thing as "love" that could last longer than 2 months; I don't care what he says, but I'll call it love. Because otherwise, us, single people, would be hopeless!

,My parents in 2007, doing what they do best: playing ...

*

This week's hardly started, really. It's been a strange one, in good, indifferent and not so good ways. With nervous eyes, I'll face tomorrow - curious as ever!