October Songlist additions

Maybe it's time to let the old ways die
It takes a lot to change your plans
Hell a train to change your mind
Maybe it's time to let the old ways die
Oh, maybe it's time to let the old ways die

and

You found the light in me that I couldn't find

and 

I'm fighting a battle
I'm fighting my shadow
Herd fears like they're cattle
I'm fighting a battle, yeah
I'm fighting my ego
Lost youth, where did we go wrong?
I'm fighting for me, though
I'm lighting the long way home

Oh, the past it haunted me
Oh, the past it wanted me dead
Oh, the past tormented me
Oh, the past it wanted me dead
Oh, the past it haunted me
Oh, the past it wanted me dead
Oh, the past tormented me
But the battle was lost
'Cause I'm still here

How October ended. The Good, The Bad, and the Vegan.

Monday Oct 22. No rehab due to suspension. Dr A just so happens to message me, asking how I'm doing. I reply with last week's story. He says I should call Dr B. I send Dr B the same message. And get an appt for Wednesday. The day goes OK, I left awful in lab meeting. TM said I looked sullen. Sooooo not my goal for anyone to see this. I've been aiming for Make Like Duck (make it look easy...) but I'm failing. I make a list of things to do before anyone comes to the house, and prep a packed bag, expecting the possibility of a September repeat.

Tuesday Oct 23. Still pain. To be more specific -- Getting up out of the chair and moving for a few minutes induces a tight feeling in the chest, that sometimes radiates up into my neck. I think even my jaw and ears. But it's not pain like I call pain. And it goes away after a few mins.

Weds Oct 24th. I get a balloon and Energy Drink from TM, LOL.  Have lunch with TV. Appt with Dr B, and just the walk over to the CAM building left me w symptoms. As I waited in the room, studying meditatively the heart anatomy wall poster, I contemplated how to describe this. Dr B reviews my SLU cath images (so cool except it's me), can very clearly see how arteries acutely narrow to nothing. And he might even see another tear. He wants Dr Sing (phonetic spelling for now) to review tomorrow. In the meantime time he wants to admit me. NOW I REALLY START HAVING SYMPTOMS. Oh gawd, NO! But.......      I can't deny how I feel. (well, I can deny anything, but.....).  So I go home, grab up the dog, quick tidy the house, and grab the bag I packed on Monday. How did I know?  Once at BJC, I drug my feet, walked Hudlin to see the rising full moon (never did get to see it), went to lab, finally checked myself in.

The hospital stay, Day 1. Weds night. The plan is to prep me for cath tomorrow, so NPO after midnight. I hadn't eaten since lunch with TV and I had zero appetite now. So I opted for no dinner. Hooked up to telemetry, giving some new meds, they tried nitro SL but my BP dropped too low and I was dizzy, so the IV nitro wasn't even started.

Day 2, my FUCKING BIRTHDAY. Happy Birthday to me, how looks, my EKG? OK not funny. Up and waiting the day to see what happens. Dr B comes by quickly, I'm getting cath'd in the afternoon. More waiting. I get a balloon from Concierge, the nurses want to bring me a cupcake but I'm g-free dairy-free and on top of all that NPO. Waiting, enjoying my Indianapolis book, fielding texts about birthday and updates. I don't tell most people where I am, I'm embarrassed about it all. And don't want to attract attention for it. My cath is scheduled for 3pm, M&D expect to arrive about then. They find me in pre-cath prep, I'm so happy they made it before I went in! I was awake for all of the cath this time and watched what I could on the big TV. Great News!!!! The stents are wide open, everything is healing, and they see nothing. Wait, then what's causing the pain?? Dr S suggests artery spasms. Ugh. OK so good and vague news. Back to recovery, Dr B comes in and seems 10x more relieved than I am, I think I'm still processing, M&D come in, Dr S comes in, it's like a parade and I'm at the middle of it and don't like it, then back to my room for 4 hours of stillness for the post-cath wound closure. As before, I use this time to think.

See this is good news, but also not so good news for me. Now what do I do when I have symptoms? Keep going? Ignore it? How do I trust myself? Was I making it all up? Was it in my head? Did I condition myself to feel "something" on a treadmill? Did I get too involved in the pain, and cause myself anxiety?

It was real. I'm certain of that. It would come on so unexpectedly, like a surprise. I wasn't overtly anxious over it, it was more of a mental diversion, a distraction. I couldn't focus when it happened. That last bit might be the "overthinking" and "getting too involved" in the pain. So mayhaps I amplified it? I don't think so, my gut instinct doesn't agree with that. But I will for sure watch for this in the future, as part of the modifications.

In other news of the day, M&D set off the alarm at the house that night. But it's OK but who would break into the house with custom plates, a business logo on the vehicle, and be carrying things INTO the house?!  LOL.  Got my new dining room table.

Day 3, M&D come in early for Dr B's rounds. I get my bday present -- the necklace!! Time For A Snoopy Dance!  Then I'm whisked away for my echocardiogram. Happily the sonographer explained it all in wonderful detail!! 30-40 mins of fun! I have mild and normal valve leaks, he doesn't mention anything else. Dr B comes in briefly, he talked to M&D too --

** And fucking-A just sitting here my chest starts to hurt, a pulsing focal pain. WTF. **

-- even though he didn't have explicit permission to do so, and I'm so thankful he did. He smirked when Mom told him about Cleo, LOL. Back to the room, where things happened quickly and I was discharged. HOME!!

We kinda celebrated my birthday the whole weekend. Shopping errands, resting, saw RM on Saturday for dog walk and TH on Sunday for breakfast. Dad walked Sugar, fixed back gate and installed light, and did lots of little lifting duties and more. Mom showed me how to cook tilapia. Visit ended way too soon. But I was looking much better this time around, the last time they were here things were less certain.

The last week of October, the 29th, I was back at work. Feeling MUCH better. It seems a heavy fatigue is lifted, was I subclinical sick last week? Did my weeklong experience with hives have something to do with anything? Today (on Nov 1st) I happily emailed Dr B an update that said I'm better than the past two weeks. and it's true. Not Cleo.

There's so much to be said about the past week. I may end up adding some in edits, or maybe I'll just let it go into the past. Speaking of which, I've dropped for now the 30+ point checklist thingie I've been doing for a few years. Time to let the old ways die? (Good song, by the way, downloaded to song list). So far I don't miss it. Of course, I've started another checklist. But I've also dropped the weekly Nutso checker with the colors and boxes I've been doing for a year or more too.

One week ago I was in the cath lab at this hour. Now I'm back to life, planning diet changes -- have lots of vegetarian and vegan books from the library!, listening to a 7-8 hour podcast from Peter Attila on cholesterol, fielding innumerable MyChart updates, straightening out a $22000 bill from St Mary's with UHC (Yikes, you can't do that to a heart patient!), and every  now and then I feel an itch to run again.

3rd week of October, 2nd week of rehab

So little is going on, I can only come up with lame post titles.

Monday 15th -- After Friday's increase in symptoms at rehab, more attention was put on me today. And sure enough, a few minutes into the bike I had "symptoms": chest discomfort (not really pain), throat pain on left side, and a headache. I did get 25 mins on the treadmill, 20 mins on the bike (with lots of slowing and stopping), and 10 mins on the hand cycle. The rest of the day, I had chest discomfort.

Tuesday -- purposefully took an easy morning and noted no symptoms. Good, like starting from a zero baseline. Then I walked into work from FoPa, took the steps up to Children's and since then (hours ago) I'm having chest pain. Just pain in the chest, behind the sternum, comes and goes, sometimes pretty notable. But not at all like the initial attacks. My bottle of nitroglycerin is sitting next to me, what to do?! Take it and see what happens? This borders on scary.

I left off here. Now it's Oct 31st and I'm retro-writing. I'll pick up in next post.

But I can summarize the rest of the above week -- more symptoms Friday in rehab, and received a call that afternoon that rehab is suspended for at least two weeks.

First week of cardiac rehab

Monday 17 mins treadmill, 15 mins bike, 10 mins hand cycle
Tuesday 20' on Bird (shhh not supposed to), Dr L appt, nutritionist appt
Wednesday 30 mins treadmill, 15 mins bike, 10 mins hand cycle

Monday I wasn't in the best of moods for rehab, why was I so negative? I guess it's my reaction to doing something new I don't want to do? Really though it wasn't hard, I don't mean the workout, I mean going to rehab and jumping through the hoops.

I arrived early, filled out my paper, grabbed a monitor and my pouch to carry it. I didn't want to do the warm-up (seriously, I'm already warmed up by 9 am, I've walked the dog and more) and besides the warm up exercises just seem dumb. Blood pressure 80/50 something, off to treadmill. They check on me a few times, check BP, ask about exertion level (exertion?! at 2.5 mph?!). I went over my 10 mins, headed towards 15 and they said OK go 15, I kept going....   Off to bike, again I went over time. Then hand cycle, where I did NOT go over time. They asked about pain, yeah some, more after the session though. Like I was punched in the sternum. Before leaving I marked my ziplock bag for my pouch with a Hello Kitty "awesome" sticker :)

Tuesday an appt with Dr L, I started it off dumb and made a really unnecessary comment about something, his response was polite but told me I was out of line. I want to say it wasn't a mean thing I said, but it was mean. In the end, my only complaint was the left leg pain in bed, and he only found issue in my lower back. So the lumbar disk stuff again.

Later Tuesday I had a last-minute appt with a nutritionist in West County. So more driving. I went into this with trepidation but a forced open mind. I wanted to hear what she had to say, but didn't want to hear what I had to change or had to avoid and had to not do. I was happy to hear she'd heard of FODMAPs (but maybe not SCD) and understood the elimination/reintroduction. Her hubby is a triathlete and she was a little confused by my non-car-loading (she said I was an outlier for that) (yeah, I'm an outlier...).  In the end, I should reduce saturated fat (beef, dairy), not worry so much on cholesterol, and increase soluble fiber. She also noted that my blood tests were also outliers -- that I can't attribute this to diet alone and I should follow up on lipidologist referral. She's thinking a lot of stuff, but I'm going to wait until I hear from said lipid specialist before too much speculation. And dietary change.

And don't tell anyone, but I did another 20 mins on the Bird after dinner. And I stopped taking the metoprolol blood pressure med. I felt so flat, and no energy, and no taste, and standing up was dizzying. But I'm on such a low dose, I think it's all in my head.

In the parking lot after this appt, I found a reply message from Dr A, said he put in a referral to lipid specialist. And that you can't eat your way to my blood numbers. Which, btw, were Trigs 46, HDL 135, and LDL 350. Yeah, Outliers.

Wednesday I had 2 of 36 rehab, I went in again in a forced better mood and did better. Hello Kitty helped my find my bag. I skipped the warm up and cool down (seriously, calf stretches and arm circles won't do it for me). I was allowed 20 mins on treadmill at 2.7 mph, somehow managed 30 mins haha. Again they asked about pain. And I asked if I can swim, do push-ups, or do planks (as recommended by Dr L). No, No, and No. Dammit.  While on the treadmill I had mild pain come and go. Then off to the bike, where I got 4.1 miles done! Again, didn't go over on the hand cycle thing. But I did turn up the resistance and tried to get up to 90 rpms.

DK texted as I left rehab, TaraB called me at work, lunch with TV, then quiet the rest of the day. Built a spreadsheet comparing saturated fats and cholesterol in common foods, then comparison with swaps. Do I really eat that much sat fat? Denial.....

Got an appt with Dr Semenkovich for lipids, gotta wait a few weeks on that. Will I make dietary changes between now and then? Yeah, obsessive as I am.Did some research on secondary (non-genetic causes of hyperlipidemia). TV suggested looking into the bile salts connection, given my gall bladder issues, but I'm not seeing a connection yet. Then looked in to hypothyroid connection, my thyroid tests came back normal, but....?

Thursday, not much. Did 20 mins on Bird maybe.

Friday rehab -- now I can confirm a pattern of symptoms, that may or may not start on the treadmill. But definitely on the bike -- chest discomfort, throat pain mostly on left side, and mild headache. Marsha will talk to Dr W and get back to me. When she called later, it was more of the same -- is it like the initial attacks?  No, but....

Saturday and Sunday -- took it easy. Wanted to hike but didn't. Mostly hung around the house and took the doggie for long slow walks. Symptoms not really notable.

One month post-SCAD

In a neat coincidence, I had my start of cardiac rehab one month after I was admitted for the SCAD event (until DrB changes the dx, I'm going to keep calling it that, even though the cath report and cholesterol numbers might indicate suggest otherwise). As I was driving to St Mary's this morning, I looked back on the morning I drove to the ER. What a whirlwind since then.

I'm doing OK, I think. I mean, really, considering all that's happened, I'm going OK. Good, great, even. Today is also 4 weeks into the 8 weeks of "slow walking and lifting restrictions" put in place. Half way there!

What's changed? Not terribly much. Mostly my diet. I'm now dedicated to grass fed/finished, opting for more olive oil instead of butter, aware of my saturated fat intake.

I miss training! But after 4 weeks of nothing and seeing another 4 weeks of nothing head of me, all the momentum is sucked out. When I see a runner or cyclist, I yearn for that feeling of movement and motion, wind and sun, exertion and pulse and fatigue and push.

I have not, as suggested by others, started writing a book or picked up a new hobby. To be honest, I'm not sure where my time has been going. Crossword and puzzles. SO. Selling shit from the house. Butterflies and gardens. More time in bed, some of it sleeping some of it just lying there (or is it laying there?) trying not to think.

Some of my OCD-type habits came back, they're OK, not harmful. Just quirky and re-focusing. Not the stair climbing one though. I miss that habit.

After close connections to family and friends in the first week, all the updating and news and such, I've reclused again back to normal. Not much to say, so I don't say much. 

I still don't feel like a "survivor", or that I went through some harrowing life and death ordeal, but everyone around me seems to think I did. I'm still not sure if I'm disconnected from it or if they're overreacting or if I tell the story in a way that leads them to that conclusion. 

But all in all I'm doing OK. No, I'm doing good!

Cardiac rehab initial interview

Oh boy. I was excited about doing this, then I started it, and while I'm still excited about it now I'm feeling some sour notes. Not on them, all on me. Let's get into that a little more.

This was at short notice so I didn't have time for the info packet to reach me ahead of this appt, so I have it now and just filled it out. I can start with that. What a joke. Why does it bother me so much? Ugh. Firstly a Rate Your Plate nutrition questionnaire - do I eat skin on poultry; what spread do I use on my bread and crackers; do I pick low or high fat cuts of meat; whole grains or refined; cheese and dairy; processed foods; do I add fat when cooking or frying; how many cups of fruits and veggies (including potato, corn, and legumes ), etc. It's dated 2010! So it's a bit DATED don't we think?!

I got stuck on some of the answers, I mean, I eat all meats low to high fat, so what to pick? "Spreads" seriously -- they mean tub margarine, veg oils, canola oils!! Their idea of heart healthy is margarine, whole grains, lean meats, legumes, low fat dairy. Ugh, I'm in trouble. I'm sure a balance can be found, right? I'll come back to that.

Then a questionnaire about how satisfied and how important various life factors are to me: including my health, symptoms, my family's health, children, emotional support, my usefulness to others, my education, peace of mind, faith in god, personal appearance, my neighborhood, my worries, etc etc blah blah. Rated on a scale of Very Dissatisfied or Very Satisfied, or Very Unimportant to Very Important. Same questions, different rating on a 6-point scale. I stared at this for awhile. How da fuq am I supposed to answer? While I do think about whether I'm satisfied with my neighborhood, and my neighborhood is important to me, I don't dwell on it. Where I to select Very Dissatisfied I mean, really, what are they going to do about it, move me to a new neighborhood? Where I to say that my friends are Very Unimportant to me, or even Slightly so, isn't that on me to quit bitching about and go fix?

What am I trying to say here. I dunno. Guess I mean that were I to dwell on these issues, then yeah I would be an unhappy person. So I got mad and circled all the same numbers for the first 3 of the 4 pages, then quit before I got to the 4th page about how Important it is to "have no worries" and "having a happy future" and "my personal appearance" is to me.

Then a depression screen questionnaire: How often do I have trouble with focus, energy, eating, sleeping, moving, speaking. Um let's see here, don't we all have days like this? So is it "several days", "more than half the days", "nearly every day", or "not at all". Well YEAH I have trouble focusing lately, duh!, who wouldn't. Yeah my appetite and sleep sucks, shouldn't it?! As I learned in the previous questions, it's Very Important to me. Were I to check "more than half the days" I'd sound like a depressed loser who needs a hard smack across the head. (And maybe more exercise in nature, oh, right, I can't do that shit right now). So I selected "not at all" for the answers to all questions. Seriously, I don't dwell on this shit, and if I did I WOULD be depressed. 

OK so enough on the paperwork. My BP was in the 80/50 range (started the blood pressure meds yesterday) so that was "low". My oxygen was 99-100%, that was "good". My weight is "low" but "don't lose anymore" (and don't forget that my appetite is poor and my diet SUCKS according to these other forms). I walked 14.5 laps in 6 mins, and while doing so read "heart healthy" notes on the wall that don't seem to apply to me. I asked afterwards, the usual is around 15 laps. Damn, I'm slow.

Lots of asking, naturally, about my symptoms. What is the pain level? I dunno. 1? Wait JeffH says to add 2-3 points, so does that mean my pain is a 3? I wouldn't call this a 3. I just call it.....there. I'm aware of the discomfort. I can't attach a number to it. It's just a dull ache, and I think it's better to ask me if it it's better or worse. I explain that it comes and goes, sometimes bad but mostly just a discomfort. Did it hurt more when I was walking? I dunno, I ignore it and focus on walking. What does the Dr say about it? They don't know either. They aren't worried, so neither am I. Until it gets worse, I'll call it Very Unimportant to me. Although I'm Somewhat Dissatisfied with the lack of answers about it.

Geez I'm really bitching about this! lol. I'm just letting off steam.

Good news -- Some rehab patients do get to run in rehab! If I have a few good sessions I might could do the bike trainer and light swimming (but no bike commute it seems). The woman running the rehab is great and supportive and athletic, so she'll be good to work with.

Why did this bother me so much? I guess I don't like being questioned? I don't like the probing of my habits and choices? I don't like admitting that I have symptoms of depression (and going back to that, again, WHO WOULDN'T?!). I'm not sure why it irked me so much, these questions. The rehab itself seems like it will be great, so I'm going to put my focus there and away from these boilerplate forms that don't really apply to me.

OK i'm gonna stop now. haha, enough.

Nutrition review, more tests, more prescriptions

DrA sent a message that my thyroid results were normal, but he'd like to see a 3 day food log, that he's never seen anyone "eat their way into high cholesterol", and he's respectful of the keto/low carb diet for athletes, and of my food limits.

So September was way out of normal for food log, I'm now over-aware of eating "healthy", not eating as much with stomach upset, and just out of whack. So I picked three random days in August. Here's what I sent. This averaged over time to be 20-50g of saturated fat a day, and I looked up the recommendations to be 13g of SF for 2000 calories. Huh?

I will promptly start the statins. And it would be prudent for me to follow up with a lipid specialist. To my understanding, Dr Braverman put in a consult for a nutritionist.

I tend to eat the same foods all week by doing a bulk meal prep on weekends, and purposefully avoid buying the same foods week after week. I log foods so I can track any symptoms from re-introducing new foods.  Recent new foods include avocado and nuts, with limited success. Shown below are three random days from my food log in August before the heart symptoms started. September was not typical due to stress, schedule disruption, and subsequent stomach upset. When I review averages by week, my food log program says 20-50g of saturated fat per day, and 300-900 mg cholesterol. 

I strictly avoid added sugar and grains, avoid as much as possible vegetable oils. I'm not at all prone to nibbles of candies or cookies or snacks. Rarely eat in restaurants. And supplement with a prebiotic, protiotic, antioxidant "greens" powder starting in late August. Not in the log is 1-2 cups a day of home-brewed strong Kombucha, 1-2T of raw ACV, and 1-2 tsp added salt to recipes (my blend of iodized, potassium salt, and sea salt). 

Day #1

4 oz ground beef, as measured raw

0.5 c pineapple

2 oz beef liver, measured raw

0.13 c coconut milk

1.5 T tomato paste

1 T sunflower seeds

3 oz beef chuck roast

1 cup steamed carrots

3 egg 

1 T butter

2 oz pork rinds

2 clementine oranges

Day #2 (did a 5K this day)

1c 5% fat Fage yogurt

~ 1 cup blackberries

half banana

4 oz ribeye steak, as measured raw

3 eggs

2 pieces bacon

0.5c home brew whole milk kefir

2 Clementine orange 

4 oz pork rinds

1 cup whole milk kefir

0.5 can of salmon

1T olive oil

Day #3

2 oz unsweetened chocolate

5 macadamia nuts

3 eggs + 3 egg whites

0.25 avocado

1 oz chicken liver

1 T butter

6 oz 85% ground beef, measured raw

2 clementine oranges

1 cup whole milk kefir

And since no experiment comparing a before and after is complete without, well, a before, here's three days in August 2014: 

Mayhaps a peek into the "before" eating when my cholesterol numbers were lower will provide insight. I have food logs back to 2014 when symptoms were the worst and I was still learning what caused problems. Here are the same August days in 2014. The biggest difference I see between the before/after is addition of red meats and removal of most all fruits,  vegetables, and grains. While 2014 is what the AHA might call "heart healthy" my logs also show daily GI symptoms, missed work,  and rapid weight loss at this time.  

Day #1 ran 6 miles Half banana

1 T Ghee butter

2 egg whites

Quinoa rice cereal

5 strawberries

1.2 pint blueberries

0.5 c ricotta cheese

Kiwi fruit

Orange

2 scoops protein powder

1 T ghee

1.5 cup sweet potato

2 cup cantaloupe

3 oz ground chicken

2 c eggplant

2 c zucchini

1 c daikon radish 

1 banana

Day #2 ran 4 miles 1 egg

0.5T ghee butter

Large sweet potato

Banana

¼ c cranberries

2 cup green beans

1 oz prosciutto

2 eggs

2 cups mixed greens

0.5c rice 

3 carrot

3 c eggplant

1 tomato

3 oz ground chicken

Rice and quinoa cereal

0.5c walnuts

2 clementine oranges

1 scoop protein powder

Day #3 no training

0.25 c walnuts

1 scoop protein powder

Medium sweet potato

3T maple syrup

Quinoa and rice cereal

2T coconut butter

1c carrot chopped

2 eggs

1 c white potato

2 pieces bacon

6 egg white

Banana

2T Almond butter

medium sweet potato

2 cup green beans

WOW I can't believe what I used to eat, the variety and foods I haven't' thought of in years! This was 2014, I was already low FODMAP and I didn't start SCD until June 2015. Then in late 2016 started NSNG, then in December 2017 started Keto, and in 2018 removed most all veg from my diet. 

I will grant that my current foods could promote high cholesterol. Question is, what types of changes can I make? Assuming the high saturated fats are a culprit -- that includes dairy, red meat, my chocolate (to my surprise!). Swap out a red meat meal for more fish? Swap out butter for more olive oil? 

As I'm typing, got calls from DrB office. The Crestor prescription is in and she gave me side effects heads up. Ugh. Also the genetic testing office will call me. 

Another call -- in addition to my CT for pelvic and abdomen on Oct 29th he's adding in an "echo" ECG.