Sunday, December 14, 2014

I think my gums are infected

Day 80:
Staying up too late again this week. Sleeping super late post-surgery threw off schedule.
Got up, taught a couple lessons then went to a music party where I was regaled with a new and improved version of my parody of "little brown jug"-hilarious! Several new verses.

Then halfway through the party my mouth really started hurting. Tried 1/2 Percocet- not enough. So had the other half. And weirdly I got sleepy. Usually Percocet revs me up.

Put a call in to the dentist. Will see what he wants to do and when... Meanwhile I'm literally sucking on an onion hoping it'll kill some cooties.

So for all you kids in elementary school yes my face hurts and I'm already sucking an onion. No room for a rotten egg.

Going to bed! This too shall get resolved. I've survived much worse.

The Singing Patient  

Friday, December 12, 2014

Still as twisted as I was in 8th grade

Day 79:
I think I can sum up my day (today) on the plan in one sentence:
When it hurts to chew, it's easy to not overeat.

At least I have superfood shakes and high-quality vitamins. Wouldn't it be ironic if I got my teeth fixed only to have them fall out from malnutrition? Don't worry- ain't gonna happen. My twisted sense of will remain twisted, twisted though. After all the challenges over the years, I'm still as twisted as I was in 8th grade.

Meanwhile I actually look forward to being able to sneeze and spit. Neither are allowed, lest I blow out my stitches. So... That'll be my celebration when the dentist gives me the go-ahead: slurping, spitting, sneezing! Where's a nice restaurant Joe and I can go to for this?

The Singing Patient  

Thursday, December 11, 2014

Day 78: 3 pounds slimmer!

Day 78:

3 pounds slimmer!
Total so far: 9.5 slimmer.
6 lbs to goal weight!
Of course the real goal is HEALTH!

I've been skinny, I've been fat, and I've been healthy and skinny, sick and skinny, sick and fat, getting by and fat (my definition of fat = 25 pounds over my ideal weight. Which I think does put me in the "mildly obese" category. but let's forget numbers for now...).

My purpose, which must not be forgotten (most especially by me), in starting this new phase of my Health Quest, was to get truly healthy. To be free of chronic pain, to have energy and to be able to focus mentally on work and go do fun things socially.

My mouth is healing (it was really itchy last night), It's still kinda of unpleasant to eat. But eat I must. I have a light teaching/ gigging schedule this week, which allows me to pace myself so I can heal properly this time. I really don't want to have anyone cut these gums open a 3rd time.
Slept in the bed in a "pile" with Joe and Easy last night (and my blackout curtains and white noise machine). LUXURY!

Following up with dentist on Tuesday. Hoping for a good report. Then I guess we'll talk about when we're going to work on the right side of my mouth. Oy... I CAN DO THIS!

(But first, a breather...)
Cheers my lovelies-

The Singing Patient  

Wednesday, December 10, 2014

Bored therefore braver!

Day 77:

My face hurts. (I know, it hurts you to look at it. Yuk yuk). Since eating is an unpleasant task, I decided to make this a cleanse day (a day involving very little food).

I aimed low today and missed (still didn't finish my to-do list for the day). But I'm up and around.
Even took the dog for a walk. Well, She saw the snow and decided we weren't going for a walk, but still- it counts. I got her and myself dressed and out the door.

She's only 6-7 pounds and this is our first snow this season. As winter persists, she'll get bored and therefore braver. That's my MO: bored therefore braver! Well one of my MOs.

Stuck to the plan. Might graduate to the bed tonight. Was awfully noisy down here this morning- leafblowers (during snow flurries- odd), doorbell numerous times. And I miss my blackout curtains and white noise machine. Think I'm past danger of hemmorhage.

Have song idea. Need to finish and make vlog!

The Singing Patient  

Tuesday, December 9, 2014

Day 76: My quest to get well

Day 76: day 75 post is up- I just didn't type "day 75" at the beginning.

Day 76 of what? Well 2 things. My quest to get well- really well. Time for the next phase in my 21-year journey in reclaiming every last shred of my health and leaving no stone unturned. And day 76 of the nutritional cleanse program I started on sept. 24.

Sept 23, my rhuematologist (after 21 years I'm still not sure how to spell that!) got my labs back and wrote me a prescription for oral chemo. I've been on it before. It's expensive, it gives me diarrhea and body odor, and increases risk of lymphoma, leukemia, and a fatal brain infection.
What's not to love?

And this is a "maintenance" drug- meaning the plan is usually to get and stay on it. (My eulogy: "how sad she died of a brain infection. We will all remember her for her songs, her humor, but most of all her BO and frequent bathroom trips").

All along I've believed that my illness was caused by something. Not sin, or genetics or bad luck (but thanks for those theories, well-meaning friends!), but plain old cause and effect. And so I think back to when things changed.

Certainly the year before I got sick was very stressful. But in my heart I know things changed several years before that, after my wisdom tooth extraction. I've always known that. I just finally found someone who could fix it!

I'm only halfway through the process (opened up then filled the 2 left cavitations), and it was no walk in the park. And yes my mouth hurts right now. But I've had much worse.

I look forward to filling the other 2 craters in my jaw, making it whole again. And having that be a big part of making me whole again.

I don't think I would be dealing with the aftermath as well if I hadn't spent the last 73 days eating super clean food. It's all a big puzzle. Hoping these are the last couple pieces.

I slept on the sofa last night and will again tonight, propped up to prevent hemorrhaging. Geez medical words are hard to spell! Enema! Ok not that one. Anyway I slept 12 hours (barely slept night before surgery - much anxiety) and today I got to eat.

And now for some mindless tv.

The Singing Patient  

Monday, December 8, 2014

Dental surgery results

I have stitches in my gums after more than 2 hours in the dentist's chair. Rooting around where my wisdom teeth were extracted long ago.

I have long felt that was the day, at age 19, when my health started going downhill. I was in bed for a month.

I had previously gone on long bike rides, marched with a tuba and done back-to-back aerobics records. Sometimes all in 1day. After the wisdom tooth extraction (all 4), When I exerted myself too much, I felt "green," like I was hungover (I wasn't) and needed to barf.

Dr cut open 2 of the sites today and found sclerotic bone (essentially dead bone) and big holes in my jawbone where it didn't heal post-surgery. When he saw those holes, and how huge they were, he said "see? You're not crazy!" I've never had a health professional say that to me before...

I've essentially had a slow-drip bacteria feed from the inside of my gums into my sinuses and beyond all this time.

As I lay there trying not to be fully present, I thought back on the time after the original surgery and connected the dots. Why I now think my body didn't heal from the 1st surgery: the dentist told me with great emphasis that I absolutely must finish my course of antibiotics so I wouldn't get infections. I had an allergic reaction to the antibiotics (head-to-toe burning rash), but I kept taking them, for fear of infection. So I stayed in state of severe allergic reaction for 2 weeks. Pretty sure that left my body no resources with which to heal my jawbone.

How ironic. By suffering through severe allergy in order to avoid infection I ended up with... A long-term infection.

I still have to get the 2 sites on my right side done. And I will. But I'm not scheduling it right this second... I barely slept at all last night, dreading this day. That's how convinced I an that the wisdom tooth extraction was the beginning of my serious health problems.

So convinced I will subject myself to something I fear dread and loathe (dental surgery!), and pay for it out of pocket! (Procedure is neither mainstream nor covered by insurance).

Had breakfast and a snack before surgery, but No more food til tomorrow. Can't risk opening up surgery sites. I'm not screwing this up twice!!!

When I got home our dog came up to me on the sofa and sniffed my mouth - no kisses, just sniffing. Then curled up on my feet to comfort me. She's so smart. She and joe watching over me in the "recovery room" (our living room).

The Singing Patient  


Days 73, 74: ran out of stevia-sweetened dark chocolate. Oh, the cravings!

Visited friends in the Bronx Saturday. Got delicious takeout gluten-free (no cheese) pizza. Our friend suggested twice that we all go out for frozen yogurt. I changed the topic... And dodged the social dessert trap!

And we ended up having a great time playing with the kids (5-yr old twin boys- they did my hair!), then (after bedtime), the 2 guys doing Kung fu and 2 gals talking about teaching.

Sunday was a day at home so no major challenges, except my lack of chocolate on hand and my rising anxiety about my oral surgery Monday afternoon... It'll all be over in 14-15 hours.
Oh and started exercise Saturday. Just strength training. That usually goes well with me- I put on muscle pretty easily. She-hulk! Paint me green.

The Singing Patient  

Saturday, December 6, 2014

Emotional eating

Day 72: got upset about something. Didn't have anyone to talk to, too gross out for a walk... So I overate.

Emotional eating. Haven't done that in a long time.

Small consolation- everything I indulged in was healthy. Plant-based protein shakes, clean protein bars (non gmo, no soy etc). I just had more than I should've. I wanted a big bag of chocolate!!!

In the future I need to have some strategies lined up- a list of friends to call (no one person is always available), and some kind of indoor way to blow off steam since it's gonna be gross outside the majority of the time for the next 4-5 months.

I'm not toxic- I didn't eat sugar or foods I'm allergic to. So... There's that anyway. And today, after my double portions of high-fiber plant protein, I almost clogged the toilet!

The Singing Patient  

Friday, December 5, 2014

Refreshed and focused

Day 71: up early- yet feeling refreshed! A productive day, feeling focused.

Got a massage. Awkwardly, ran into the guy I used to make appointments with. I think I will switch back to him. New guy talks too much. Of course the other guy has such a thick accent that I can barely understand him.

Didn't weigh myself. Fought major chocolate cravings late in the evening. Probably due to end-of-long-day fatigue. But I won!

Having weird tmj symptoms for no discernible reason. Just my jaw making noises. No pain, no headaches. Odd.

Pretty sure I will be crashing at a reasonable hour tonight- who is this person?

The Singing Patient  

Thursday, December 4, 2014

Perfect day on the plan

Day 70: as inexplicably as I gained 3 pounds, I dropped 2.5. O scale, thou art a mystery wrapped in a conundrum.

Think I wore myself out yesterday. Got close to nothing done today.
However I had a nice lunch with my visiting pal and fellow musician Amy Engelhardt and she is on my couch as I type and we all get ready for "sleepy sleep" (as we explain it to our dog).

Perfect day on the plan.
Tomorrow I get a massage
Yesterday and today I needed no pain meds.

I have a song idea for the vlog but just no get up and go today to work on it. I do believe I borrowed today's energy yesterday.

Was totally worth it. Taped an interesting songwriter internet show (comes out next week) and did a live streaming concert with the fun and funny Todd Chappelle, both in Pennsylvania, involving lots of driving in gross weather in the dark. So I doubled up on caffeine - and today I pay.

That's ok. As I heal, I have days where I feel normal - as in, like a normal person! Waking up rested, not needing caffeine, feeling focused. Not lots of them, but enough to know I'm on a good path.
And so, I keep going!

The Singing Patient  

Wednesday, December 3, 2014

Day 69: stepped on the scale

Day 69: stepped on the scale. 3 times. It has gone in the wrong direction. That's annoying.

Long day of driving in icky weather and doing 2 internet music shows. Those were fun. Woke up tired (went to bed too late) and struggled to reach my desired level of perkiness.

Home late. Ate fine. Will wait a day or 2 before stepping on dreaded contraption again. Perhaps the Percocet from a few days ago is backing up the works...

Another early morning coming up. Universe helping me fix sleep schedule...

The Singing Patient  

Tuesday, December 2, 2014

Yay for moral support!

Day 68: This is the week that Joe is joining me on the plan. Yay for moral support! I'm happy and relieved that he actually finds the food delicious and filling! Whew- a relief.

Had a couple guitar students, dr appointment, pushed through some email and phone calls, then realized no amount of caffeine was going to perk me up, so I took a 3-hour nap. Ahhhh. I was dragging over the weekend, but had to get up Sat and Sun for early guitar students. It's like the universe is conspiring to help me fix my sleep schedule. Thank heavens I'm able to nap! For years I've never been able to wind down and nap.

Stuck to the plan yesterday and today, and wouldn't you know it, my pain is gone. Please, remind me as the holidays approach: refined sugar is not worth my being in excruciating pain!! Yes I need reminding. It's all over the flipping place during the holidays. Sugar sugar sugarrrrrr!

Point is, I feel better.

Have a long day of driving/ internet broadcasts tomorrow (today at this point), so I'm just posting a written update rather than a vlog. Youtube crashes on me repeatedly, then I catch myself swearing, and it's still recording, so I have to start over... Ends up taking 30-45 minutes to record a 5 minute vlog. One of these days I'll just leave the swearing in for your amusement. I did own a sunfish when I was in high school so technically I'm a sailor.

See you in the next update! Onward and upward!

The Singing Patient  

Monday, December 1, 2014