Patience Perseverance Perspective

Summary of 4th week from event, or 3 weeks after event, or however you choose to look at it.

This past Tuesday marked 3 weeks, my counter says 23 days, when I count the calendar I get 4 weeks. What-f'ing-ever. 

Hooo I'm not a great mood am I? Today is Thursday, I haven't been sleeping great, no appetite (I get hungry sometimes but don't feel like eating), I'm bored. 

And all day lots of chest.... pain? discomfort? sensation? You know that feeling you get after holding your breath, like your chest is cold and your heart bounding? That feeling.

I called the Dr office and left a message with this, noting that symptoms seem to worsen after I stand up and/or start walking. But the for the past hour it's been continuous. My HR at 60 ish, seated. Should be lower? Is this anxiety?

Monday in lab meeting after we switched rooms my symptoms shot up, and TM noticed that I wasn't OK. I said "it hurts" but didn't go further. And worked to hide it better. That night I started a rant text to TH and TB but didn't send it. Don't want to be a Symptom Sissy. A Negative Nan. A Debbie Downer. 

Wednesday TB called me, she said she learned Patience Perseverance and Perspective going through her schtuff. She's about 1-3 months ahead of me in mental recovery and her advice is so far my favorite. Only TB and TH let me rant without trying to fix me, they affirm and accept how I feel. No push back, no fixing, no "well you need to {insert crazy idea here}". 

Today I also contacted St Mary's medical records office to get the info started for the Mayo Clinic research study. I contacted BenG to get info, then emailed Dr Braverman to get that ball rolling. On Monday I see Dr Avery. 

In sum total, is all this causing my stress? The uncertainty? The wondering? The waiting? I don't feel overtly stressed, but it's gotta be there. 

What else is going on? Random: Sold a stack of history WW2 books yesterday. Might sell my dining room table and chairs tonight, if the neighbor shows up this time. SO build a third caterpillar cage for me Saturday. Currently listening to my favorite LOTR soundtrack mix to calm myself. However, in an anti-calming effort I'm trying to burn it to MP3 or AAC to listen offline.

Friday update. Sold the table! To a triathlete, who's from Iowa, who lives on Compton, who went to WashU. Realized on this morning's walk that the table has now gone from Wyoming to Compton to Wyoming and now back to Compton!

Hobbit Day and Frodo

 Meet Frodo!!

This was a caterpillar SO gave me right after I came out of the hospital. For once, my cat didn't DIE on me after hanging in a J. She (figured out she was a she only once she came out of chrysalis) went into chrysalis on Sept 14th, and my quick math said should might could emerge on Sept 24th, a full Moon Day!!

I eagerly and carefully waited :)

On Friday Sept 21th the chrysalis changed from green to black! SOON!

On Saturday the 22nd, aka Hobbits Day for both Bilbo's and Frodo's birthdays, the chrysalis turned clear and I could see the orange wings folded inside. I watched and researched how to know "when" and waited. My iphone camera hasn't been working lately, it freezes up and pixelates. But the front-facing camera works, and I decided to test for the first time a time-lapse. While I was testing, NO JOKE, the chrysalis cracked open!!! That really happened! So I got a few short videos of my butterfly emerging. Once determined to be a female, she was christened Frodo :)

Texted SO, send picts to Kaitlynn, imaged more, and waited happily while she pumped up her wings and started her "new" life.

SO suggested taking her out to a warm place, so I took her to the front yard. She walked on my hand and my arm while in the sun. SO came by later and took me shopping for my 3rd whiskey barrel planter :)  I'm gonna have ALL the butterflies next summer.

Frodo hung out on the fence and in my 2nd planter with the white butterfly bushes, but didn't fly off. Some concern about this. I brought inside overnight in case the temps dropped.

Sunday morning I took her back outside to the orange milkweed. She still didn't take off, seemed to hang tentatively and clumsily on the flowers. Other monarchs same in to feed on the orange flowers, and they only knocked her off. I'd pick her back up, only to have her fall back again.

Not good. Sadly, by the end of the day she wasn't moving and I had to declare her dead.

I brought her back inside to the kitchen, and she's been there ever since. SO suggested putting her in a glass frame, still haven't done that yet (it's been at least a week).

So why am I writing this up about a dead butterfly? As she went into her chrysalis and I waited for her full moon arrival, I formed an attachment with the parallels to my new life. Here I was coming out of the SCAD events and hospital to my own new life, at the same time here was my little cat doing the same. It seemed so.....omen....and you know I love that shit.

But....she died?! Do I still see the parallel? I do. My silly mind rationalized that stayed behind to remind me, so I could see her everyday. And remember what we went through. I know...silly, but that's me.

And now OF COURSE I want a monarch tattoo, but I gotta wait. LOL.

Two week follow up appt, increase in pain and stress

Tuesday, after the dog's walk I went out on my own for a walk to Grand along Arsenal, back on Wyo. This felt great!! But did it contribute to the increase in chest pain/pressure/? I felt the rest of the day?

Wednesday, my follow up appt at St M's. I saw Deborah a CNP. And TH joined me, thankfully, as I was rolling ideas around in my head and wasn't sure I'd absorb it all. I think I did. Summary:

--I should be taking the statins, however, I'm still not on board with the idea. She said my LDL is "High, really high".  Uh huh, at 318. And my TG and HDL are phenom, but that's being ignored? My argument is that I still haven't seen evidence that my bad LDL (the small dense type) is high. And until the LipoProfile or NMR is done, I'm not convinced. Her second attempt to convince me went along the lines of "statins lower inflammation", sorry but that's weak. I'm open to taking it, when the evidence is solid.

--the pain/pressure I'm feeling, worse today than yesterday but not bad like the attacks were. It's just a persistent and constant ... pressure? I think it could be anxiety too. It's definitely not my back, I can rule that out.

--My EKG (I think done to reassure me) was somewhat abnormal, but not such that they were concerned. And it's possible that it's still changes from 2 weeks ago events.

--NO ACTIVITY. No I can't ride my trainer, even in HR zone 0. Boooo.  For a total of 8 weeks, full rest, dog walk only, and less than a gallon of milk. Boooo......

--My backpack was even weighed! Came in at 7.64 pounds.

--Testing for potential causes will be handed off to my PCP. There's many ways this could go for follow up: rheumatologist, more vascular, immune, metabolic/gut, and those further branch into genetic, environmental, functional, etc. So that's on hold until I see him October 1st.

--The only way to know if the 3rd tear is healing is by another catheterization. And there's no need to do that unless the symptoms indicate the need.

--I CAN NOT stop taking the anti-platelet therapy drugs. Do not miss a dose, do not stop taking them for dental work or surgery unless they've talked to the cardio office. They seemed amused and scared that I was "testing"  my bruising abilities to see how much or how little pressure it took. Gotta know, right?

--What else.... ?

--I picked up my discharge record and got started on getting a copy of the catheterization procedure. I'll put that in another post once I have it all. I really want to know the details of what, why, where, how, and more. So I'm learning more anatomy and lingo.

Thursday. Still have pressure/pain in my chest, but figuring that "it's nothing" I went for another long walk and tacked on a super-easy no-resistance trainer ride. My hip appreciated that! Don't tell anyone.

Friday. Today, as I'm writing this. Seated, with the same chest feelings. It's no better or worse than the past few days, and I'm still telling myself "it's nothing" based on the EKG. I just need to learn to deal with it.

A few low moments this week when people react to my news. Most express shock, disbelief. I'm finding that I don't want to talk about it much. But I'm accumulating a list of things to NOT say to someone like me, including

-- read a book, or watch a movie. I nearly died. Or so I'm told. That's not going to help.
--you just need another hobby. Yup, it's a simple as that.
--you should pray more. So this is my fault for not praying enough? Seriously, I think God has it out for me.

OK time for some SCAD thoughts, not just schedule reporting.

This will be random.

First off, I'm writing this on Sept 17th, two weeks post events. My symptoms are seemingly better? I still get chest pain but less frequent than last week. It's a tight feeling, less pain than pressure. I get sometimes a fluttery/cold feeling in my chest and throat. A few times I had throat pain and tightening but it was short-lived. The chest pressure feeling makes me catch my breath, I stop and think and wait and wonder.... but it goes away.

So I wonder, is it heart symptoms or anxiety? A Vanderbilt study reported that 46.5% of survivors experienced chest pain after a SCAD event. I'm guessing I'm one of them, and just rolling with it. Taking the advice of -- if it gets worse or radiates into the neck and/or arm then get worried. So far, not much of that.

And the "survivors" thing. When I look online I see women talking about being a "survivor". How the event changed and scared them. I don't connect with those feelings, they don't land with me. Yet? I don't feel like a survivor. I feel like, well of course I survived. Dad pointed out that maybe since I didn't have the full ambulance/resuscitation/dire emergency experience that it's not the same life-changing event for me? And in retrospect, I was never really afraid, never sitting in fear for my life. I remember being calm and just taking the days one at a time. So I survived, but I'm not calling myself a survivor.

People keep saying "I'm so glad you're alive" and again I think, well of course I am.


I found a necklace pendant that says "God gives us only what we can handle. Apparently God thinks I'm a BAD-ASS".  lol Badass Bee.

I texted TH today about her coming to my Weds cardio appt. I'm really focused on this appt, listing and questioning and researching. So many questions. I mentioned to her that I can't distinguish chest pain from anxiety, and I don't trust myself to even try. Also mentioned that were I to have another attack, I don't trust myself to tell anyone else for fear that the rest of my athletic life would be taken away from me.

2nd SCAD recovery week

All written in retrospect, from notes and memory.

Monday Sept 10th Drove out to St Chuck with Mom to pick up my new dining room chairs, then out to antique mall to look at a new fainting couch for the living room. Mom found a pair of black/gold chairs to add to our shopping list. Got in two hours at work, by then I was tired out. Tired...from what? I'm not doing anything.

Tuesday Sept 11th ONE YEAR HIP SURGERY! But that's not the point anymore. Today was visit to Dr L and JH, for me I hoped to get some athlete-level conversation and for mom some reassurance that I'll be OK. At Dr L's office, Debbie said I "gave him quite a scare". When he came in the room, he was serious, as I updated him and joked about being able to pass people on the bike hill while having a heart attack. My jokes are a cover? Or just how I deal with it?

He discussed a lot and as usual I wish I could get a transcript. He graphed out Load and Capacity. Load being how much training I did and Capacity how much my body could handle. My Load was high, and my current Capacity low (or was it the other way around?). He said a race like Sunset is "nothing" for someone like me. He stressed that I follow up with testing and considerations of metabolic, nutrition, inflammatory, and genetic factors that lead into this. He said I needed to severely restrict activities and treat this like a soft tissue injury -- for a minimum of 4 weeks and up to 8 weeks. Also that this is just another soft tissue injury on the heals of other similar -- the hip, back, etc -- and that it was 'suggestive' of a problem. Then a check of the back, neck, and hip -- all good with just minor maintenance.

I'd hoped mom would be reassured after this, but instead she just saw cautious fear. I took away a to do list of things to think on and follow up with.

Then off to JH, who set aside some time to talk to us. My goal was to update him on my return to training (I didn't even have to ask Dr L what the answer to that would be, I could read that on my own) and get some of his positive vibes. Again, wish I had a transcript. He pointed out that I recovered before, I'll recover again. That my pain scale reporting needs 2-3 points added to it since I'm good at pushing and ignoring pain. That a joint injury is not to be thought of as an internal/head/heart injury, that I can't push through and use the same recovery trajectory line of thought. It was all good, for me a boost and some crucial definitions of pain -- the where and how.

Then off to the antique mall to get our couch and two chairs! Rest of the day, redesigned the living room with mom's uber good designer help.

Wednesday. Relaxing day and morning, more time in rearranging the living room and talking, before mom left on the 3pm Lincoln. I confess to shedding a few tears here, but as much as I wanted her to stay that wasn't a sustainable solution. Back home, it was my first quiet time since....Monday the 4th, which came after a week of being home for the wedding. What a whirlwind.

Thursday and Friday, partial days back at work.  6-7 hour days. Talked to Dr Ravi in depth, and the boss, otherwise kept to myself about it. I don't want this to define me. 

Saturday met with TH for a walk in CCP. She's got a stress fracture in her left heel bone so we were both limited. I could have walked all day. Went home after a stop at Fresh Thyme and a coal bucket sale in Kirkwood, and felt sick to my stomach. Again. Hope the SIBO doesn't take advantage of this stressful situation. Saturday wasn't a good afternoon, and I skipped out on going to TV and MP's birthday party.

Sunday I decided to hike one of my faves -- the Chubb trail. So perfect outside! I kept the HR low and didn't get over 120 at all, most of the time 90-110. It all felt good, 3.5 hours of nature and quiet and butterflies. SO called right at the end, admonished me for going alone. But something could happen anytime, not just in a hike, and again I don't want this to define me! Home for a better day than yesterday.

SCAD recover, new moon, Bee 3.0

Friday. See the amazing thing about all this is how good I seemed to feel. I mean, aside from the continuing chest pain (Dr said as long as it doesn't get worse, and the can't give me beta-blockers to help it because of my low BP) I really did feel OK. The cath side in my groin hurt, and that lump gets bumped by everything, but that's it.

I felt tired, I will say that. But I'm always tired after sitting around for a long period of time! Denial.

Short dog walk, with Dad walking Sugar. Butcher shop visit for 1 lb each of liver, heart, ground beef, and some porchetta and heart pastrami. The irony of that not lost on me. Visited an estate sale, found a great lamp - white with gold painted flowers.

SO visited and met dad (already met mom and sis in hospital on Tuesday), helped plant my roses and butterfly bushes. Later on made his lasagna, I'd picked up the ingredients Monday.

Saturday. Rain and Thunderstorms! It was supposed to be severe storms, so severe that the MS150 was canceled. Mom helped me list the sewing machine and leather chair and other living room furnitures, drapes, and rug in the basement. I've been talking for 3 years now about selling this stuff, and time for Bee 3.0 to act on it.

By the end of the day, $50 for sewing machine and $350 for the leather chair. Whoop!

Visited Fresh Thyme, a consignment store, Dad and I fixed a broken kitchen drawer. Making lasagna is hard on a kitchen!

The cath site in my leg looks awful. Black bruising, is it really bruising? You can see where blood just leaked out under the skin. Dinner at Hodak's with Meisha's gift card. Couldn't help but wonder why I had heart problems when the mordidly obese regulars who couldn't fit in the booths didn't.

Sunday. Woke up to light rain. Hung out at the house, since I was up early I made my pickled peppers, pepper pestos, cooked my liver and some ribeye. Mom dyed my hair purple and pink! That finished at 1pm, the same time as a New Moon!  Went to Benton Park Cafe for lunch, another gift card from Meisha. SO came for his lasagna, in a nice white t-shirt like I love so much. He'd run a 10K this morning and won 2nd OA!! Then Dad had to leave, ooooh so hard to say goodbye. SO helped me walk Sugar by running her up and down the sidewalk. Mom touched up my hair dye, then we relaxed. Lots of resting these days.

SCAD Day 3, released from hospital

Another visit with Dr White, mom and dad there too. She immediately offered cardio rehabilitation. I asked what's involved --a treadmill and EKG-- and that's all I needed to hear. She said it would help with my confidence in returning to activities. Oh yeah!

She didn't see evidence of FMD. My keto diet is OK. My IUD is OK. Genetic testing maybe. The work at the wedding had nothing to do with this. +Sounded all good to me. I told her I'm still hesitant on the statins, seems like something we'll need to talk more on.

Released! And I could walk down on my own, no wheelchair. The sunshine and fresh air and freedom all felt so good. Off to Walgreen's to drop Rx (aspririn, Brilenta, and a statin), off to Park Ave for coffee, then to gift shop in Lafayette where mom discussed laser printers and business, then Walgreens, Fields. Then message from SO -- he brought me roses-- real roses not the cut ones! They were on my front step when I got home :)  He also cut down the front grass, he said it'd grow back overnight, lol.

Imagine Dragons Natural played while at Fields. Just days ago I heard that song for the first time. Songlist?

Home to rest, and see Shoogs!! Poor Shoogie was boarded from Weds 29th to Monday 3rd morning, then with friends and family from Tuesday 4th through Thursday 6th afternoon. Then another week of family around. She just rolled with it.

Still hasn't settled in yet. So still talking about this as a sequence of events, not addressing the meaning of it.