Exactly Why I Need the ACA

Exactly why ACA and the ability to get health insurance with pre-existing conditions matters.

In 2013 I had a craniotomy to fix a hole in my superior canal (superior canal dehiscence syndrome). Side effects of the hole include complete lack of balance, migraines, and hearing things like my eyelids pop when I blinked or brain swoosh when I turned. As my symptoms increased my ability to do anything decreased. I eventually ended up on short term disability a month before my surgery. Without that surgery I would still be on disability. With that surgery I am an active part of the community with a good job that just bought a house and a car (economy yay!).

I was on disability for three months. The month before surgery and two months after. I was able to continue insurance through Cobra ($700/person) and was paid disability wages (60% of my paycheck). Rent was about 30% of my paycheck because we were lucky. Rent in general is much higher than that. To cover both me and my spouse would have meant that all my disability wages would go to insurance and rent and some rent would be paid by my spouse. My spouse is a cook. I love him tremendously but his paycheck does not support us. Mine does. Money left over from paying insurance and rent and doctor copays and bills would not have fed us and some bills would have gone unpaid.

We sat down and talked. My husband was healthy and we decided he could live without insurance for a few months. A year later, back on health insurance, he had a heart attack. More on that later.

So we managed to scrape by, keep our apartment, not go bankrupt, get me the surgery I needed by deciding to forgo health insurance for my husband for a few months.

Let’s say this surgery did not happen in 2013. Let’s say it was happening this year. This year we could not afford to forgo health insurance for my husband. He has had a heart attack. That is a pre-existing condition. Congress is in the process of dismantling the protections offered by the Affordable Care Act. Whether they succeed or not we cannot risk my husband not having health insurance for even a moment. Then he could be denied health insurance ever after. And he would.

He has heart medicine. He has a lifetime ahead of him full of potential health risks like broken bones, the flu, another heart attack, bronchitis, my imagination is running wild but it’s not unreasonable to assume in the next 40 years he will need to see an expensive doctor.

In 2017 with ACA under attack we could not decide to budget away a few months of health insurance when times are tough.

In 2017 with ACA under attack I cannot open a small business because of the risk of missing health coverage.

In 2017 with ACA under attack if I was having that same brain surgery we would not be able to afford rent. Healing from brain surgery while homeless is impossible. We would have taken out a lot of debt, ruined my credit rating, never bought a house, declared bankruptcy which is now something employers look for in your history. My ability to get hired, get insurance would have gone down.

In 2017 my four months off for brain surgery would have been a life sentence of poverty and tax payers eventually paying for my food stamps, disability checks, and unpaid medical bills.

I know why people hate the ACA. They hate having to pay for insurance they “don’t need” and “can’t afford.” Then work on the costs!

By throwing the baby out with the bathwater Congress is screwing over a whole class of people who until recently could find ways to juggle their expenses to make health care work.

Essentially all you healthy people who “don’t need health insurance” are screwing me over because I happened to have a hole in my head.

Now don’t try to problem solve me. Don’t tell me our parents could have paid some part or we could have started a gofundme or try to fix the math so everything works out. Don’t polish this turd.

Without ACA people like me are going to go bankrupt and without health insurance people like me are not going to go to the doctor to find out why they have migraines because they can’t afford the special CT-Scan that finds a hole in their head that fixes their problem. They are going to end up on disability and after a few years of listening to their eyelids pop and their brains swish they will kill themselves. Trust me.

So call your Congressman. Tell him that you hate ACA and you’re happy to see it repealed AFTER there is a replacement plan in place that protects people with pre-exisitng conditions. Hell, why not throw in the protection against lifetime caps and the ability for parents to pay for their kids to be insured through college?

Really. Call your Congressman. We need the provisions that the ACA provides. I need them.

One Year Anniversary of Surgery

A year ago today I had a middle fossa craniotomy to fix a tiny hole in my head called superior canal dehiscence. It was one of the smartest decisions of my life. After the surgery I wrote a post about the symptoms I had had and the symptoms that still lingered less than a month after surgery. Given the anniversary I thought I’d do another post on symptoms.

This was the original list, now with notes of how I’m doing a year later.

Pulse-synchronous oscillopsia. (The little dot in my eye that goes ping ping ping or ponk ponk ponk.): Gone.
Hyperacusis, over sensitivity to sound: Gone. My husband is shocked at the amount of noise I tolerate now.
Low-frequency conductive hearing loss: Gone.
Headache/migraine:  The old headache is gone. Sometimes the bone aches when the weather pressure changes. I have a friend who broke his wrist who has the same problem. Bone heals slowly.
Autophony: Gone. SO weird that my voice only exists outside my head!
Vertigo/Nausea: I still get dizzy if I overdo the walking while moving my head but nausea and falling down and bumping into things all gone.
Ear Fullness: My ear still feels funny like there’s something in it but only when the weather pressure is up and not in that airplane taking off with a headcold way that it did before.
Brain Fog: Still gone!!!!

Happy days and eternal thanks to Dr Wackym in Portland who fixed my head.

Six Months Post-Op

June 6 was my six months post-op date and I didn’t post. I feel so much better that having had brain surgery feels like it could have never happened. Except for the spot on my head with no nerves, the twinge in my skull when the weather changes, and the occasional bit of buzzing or ringing in my ear. So I can feel I had surgery but meanwhile I just feel wholer than I did before.

I also feel more relaxed, less anxious. I try to get to the gym twice a week, am getting to work regularly with sick days only for when I have a normal sort of flu or cold, and am thinking very clearly. I’m not as productive as I dreamed I would be. Instead I find myself thinking about who I feel like now that my head is all healed up. Not that I am a different person from before my surgery. It’s just I feel more capable of doing more in a slow and graceful way. I am also out of the habit of doing more and am slowly building up my stamina for life.  Still taking long naps on weekends but not as often.

What next? Camping. Road trips. Building up friendships.

From Going to Running Away

The gym I joined has a class named Barre. This is a ballet term that describes a series of exercises that would be fabulous for my vestibular system: standing up straight, positioning feet, bending knees and standing on tip toes, moving arms, all without falling over.

When I was last at the gym I noted the time it took place: 5:30am on Tuesdays.

Last night I went to bed early and this morning I woke up at 5am. I really want to go to this class.

I got dressed and ate a light breakfast (cottage cheese and peaches) then tried to figure out what shoes to wear. I’ve taken ballet, both as a child and as an adult, but don’t have ballet slippers. I also don’t have tennis shoes. I do have house slippers. I grabbed some house slippers and slipped on some Crocs.

On the way to the front door I passed the window into the room where the class was setting up. I could see that people were wearing neat light tennis shoes, socks, and some ballet slippers. I suddenly felt frumpy. I try to take pride in the fact that I haven’t spent ridiculous amounts on the informal uniform of athletic clubs. The sleek black lycra with racing stripes. I really do need to get some appropriate shoes though.* House slippers? Really? But I really want to go to this class!

It also seemed as if the class, which was gathering, was full of petite athletic women. I look like a woman from a Wagnerian opera, except I don’t sing that well and I’m not blonde.  Deep breath, I really want to go to this class.

Into the gym I dash, momentarily hating the sign “strong is beautiful.” Who cares about beauty? Why does beauty have to come into it? Why can’t strong just be strong?

Through the maze of exercise machines and over to the class room, I open the door, and the class has started. Probably only by seconds but started. I duck out like I’m lost. Try to convince myself to go back. Instead run away.

Next time I will get there early. Being in a rush, starting late, just increases the awkwardness beyond what I can stand. Next steps: appropriate (pretty), comfortable shoes, get there least ten minutes early, deep breaths.



*Appropriate shoes: my preference is to be barefoot. I admit that I wear the Vibram funny toe shoes. Now Vibram is paying everyone who ever bought their shoes money because they are sorry because people who wear Vibrams are stupid. I feel like wearing them is a big stupid mark on me. I like them though and have the hardest time finding any shoes that are as comfortable as being barefoot or Vibrams which is nearly barefoot.

Irony Loves Me

I drank a lot of tap water in NYC. I drink tap water at home. Tap water is safe.

Yesterday morning I came down with horrible stomach sick including stomach cramps like you wouldn’t believe. Stomach flu, food poisoning or something.

Nope. Portland OR has a “boil your water” warning out and I (probably) have e coli.

Why does irony love me? I spent the last twenty four hours chugging water in an attempt to stay hydrated because of my stomach thing which is probably the result of drinking that same water.

Anchoring from Adrift

There’s something about changing from illness to wellness that is a surprisingly difficult switch. Not only is it a gradual shift rather than a sudden one but there’s also defining what wellness means.

Wellness to me means hiking and kayaking and taking long walks and dancing without getting out of breath (well past without getting horrible headaches or vertigo). It also means using my brain and crafting with my hands.

I joined a gym today. If anything should get me back to an active state having a gym membership will do it. I’ve done gym memberships before and they work surprisingly well for me.

Reading is part of using my brain but I think I want to start doing high school style reports on what I read. Maybe it’s time to start using Good Reads as much as friends who really use it the way it can be used.

Crafting is Isaiah’s socks, my shawl and hopefully soon some quilts.

Life Continues

We got a new cat, Michael Symon Pegg, who is two years old and a good companion for our “kitten” Pirate who was not doing well with being an only cat.

I’m attempting to join a gym. They want sign off from my surgeon that it is ok for me to begin exercising. A few phone calls, a few hoops to jump through, probably some forms, hopefully some good end results.

Set some goals to write regularly again, exercise, eat well, etc.  Will work on that.


Modifying Yoga [modified]

Twenty years ago I started practicing yoga by choosing a routine from the back of Youth, Yoga and Reincarnation (a book I never finished reading but oh the appendix is worth the $1.50 used price). Over time I’ve modified that basic yoga routine to suit me. I took other yoga classes, studied dance in various forms, learned about muscles and stretching and what my body in particular needed. I now have a modest little yoga drill that works for me. When I do the exercises I go at a pace that works for me. (A very  very yin pace.) I try to associate breathing in and out with the up and down of the motion and generally at my weakest will repeat three times or hold for three breaths.

I haven’t done yoga in over two years. Health issues blah blah blah. On Tuesday I asked my vestibular rehabilitation therapist (aka balance therapist) how long she expected I would need to do my balance exercises. She said that ideally I would do them for the rest of my life, once a day. This was momentarily crushing. It felt like she was saying I would never be healthy or “normal” again. Not that I ever was normal, not that any of us really have met normal, not that the normal in my head is the normal that exists on average. Normal bah!

After a day of digesting this news I decided to start doing yoga again. For me it is a gentle daily exercise that I already had a habit around before I started experiencing all the things that led to brain surgery.  I realized I could modify it to include my balance exercises. That way these exercises are just part of what I do, not something I do because I had a hole in my head (SCDS).

My balance exercises are divided into three parts for me: sitting, standing, standing ankle thing.

Sitting: Sitting with good posture, thumbs become the focal point. Hold thumbs about 10″ from face, each one in front of a shoulder. Look thumb to thumb holding on each thumb for three seconds, moving slowly with eyes between thumbs. Move thumbs to about forehead and heart height and look thumb to thumb again. Shift out to shoulder height again, one up, one down and look thumb to thumb. Shift which is high and which is low, look thumb to thumb. Change to holding one thumb in front of face, this time moving head/vision left right, up down, diagonally both ways. Then change to holding head still and moving thumb while following thumb with eyes (left right, up down, diagonally both ways).  Feel very bored but also headachy and tired.

Standing: Standing with good posture, first time through with feet shoulder width apart, second time through with feet together, third time through with feet shoulder width apart and eyes closed (third time is an advanced exercise lately added.) Move head up and down, side to side, top corner to bottom corner (both sides), focusing on what is visible when eyes are open.

Standing Ankle Thing: Standing with feet shoulder width apart lean forward and back only bending at the ankles. Remain very very aware of feet and ankles.

[modification] I plan to do Standing Ankle Thing  before Chest Expander, Standing after The Stork right before Neck Rolls, Sitting will go where Eye Exercises currently is in addition to those mild yoga eye exercises. [end modification]

I’m also generally modifying my yoga again. Definitely no inversions.

These are the pages I created ten years ago with the complete list of modified yoga from which to pick and choose. I’ll need to make a new entry with modified yoga and balance exercises as described above.

Page one yoga
Page two yoga