Be a stone in the river.

When you have a Chronic condition, any disability or illness or trouble that lasts longer than other people have patience for, they often talk up how great it is for you to always be fighting, always "keep fighting this". Guess what?

They mean well but that is *exhausting* and irrational to expect.

 I'm not saying give up, I am saying you do not have to fight all the time. No one can be in an aggressive mode every day, "inspirational" only when thrashing about against the current. Sit in the current. Be a stone in the river. Let the river go past. 

“Heaven is where you are standing, and that is the place to train.” Aikido founder O Sensei Morihei Ueshiba.

I’m not saying you have to be pleased to be where you are. Being sick or disabled in some way often just sucks. It isn’t sunshine and rainbows.

But it is where you are right now, and it might help to know
that you do not have to wait to be happy
until you get better.
You can be happy or at least At Peace in some ways here and now.

Once more: You do not have to wait to be happy
until some future or impossible time when you get better.

You don’t always have to be “fighting”. You deserve to have peace now. Let yourself have it.

Post Sinus Surgery- day 2? -Ish? Wow, pain meds are great...

I had the sinus surgery and it was successful. I will write more later. Currently quite loopy. Thank heaven for good medicine or my face would be hurting wayyy more.

Update coming soon.

Updated! 
Doctors told my parents that the Silent Sinus was indeed very small and closed up and had been full of seriously nasty gunk, which is probably what made me sick all month. They sent a sample off to be lab tested to check for anything notable. I kinda wanna hear if there are results.  So that sinus has been kind of re-carved out, they shaved down the Turbinates, and they did a Septoplasty to straighten my deviated septum so that I can breathe through regular sized nasal passages for the first time ever. I can't wait to try deep breathing once it's healed, I have always wondered what it would be like to breathe freely and deeply just through my nose.


So, Monday:
the surgery itself was about an hour or two, they say. I had a bad hour or so afterward, in the recovery room, because while I was asleep my body still felt the surgery, and my neck and shoulders had clenched tight into knots, and I was hurting and druggy and pitiful. Dad was sitting right there, and  they fed me pain pills and applesauce, and then I got home and got over the Effexor withdrawal by taking my daily dose of that, and they even gave me a lil' anti nausea drug to go with the pain pills. The surgery staff were all terribly kind to me the whole time. Lovely people, and that's not just the Percocet talking.

The post-op nurse was really surprised by how coherent I was even after the pain pills kicked in. She  had to help me up to get me re-dressed, and kept saying how remarkably well I was doing. I laughed and told her I've had a LOT of experience being medically compromised. All those times I was wrung out on Effexor withdrawal and had to try to function anyway gave me a lot of training at this sort of thing. Being able to move, talk, and balance while chemically compromised is a skill you can actually practice, it turns out.

Mom and Dad are looking after me now. I have thick squishy blankets, and a nose rinse to use. Daddy bought me GF cookies but I sadly cannot taste them. I can only pick up broad basic flavors right now, like salt in my omelet, or sweet green smoothie. Trying to relax my shoulders- I won't be able to lie face down in a massage table for like a month at least, since those face rings put a lot of pressure on the sinus bones.


 I have to take pills every four hours, and rinse out my nose a lot, and sleep sitting upright, and wear a face bandage so I don't leak draining saline or blood on anything.
What I really want to do is lie down on my side like I usually sleep, and sleep for 8 hours straight.
It'll be a little while before I can do that, but SOON.

Just now my face hurts and I am tired, because I have to take 1 pill every 4 hours, and the pills give me a heinously dry mouth, but that's helping me make sure I stay hydrated, so there's that.

Percocet makes me chatty, but I am also talkative (typeative?) because I am bored and a bit lonely. It's hard to talk out loud with a hurting face so my verbal communication is limited. Besides, Mom is busy. I am excited to be on my way to healing.

Day 30- Norovirus is the flu from hell.

..and I will not be convinced otherwise. Getting that on top of my sinus sickness was
bad.
I have not been so sick in years. Uf. But the norovirus is fading off, leaving me weak, shaky, dehydrated but back to where I was before- just sinus sick. Compared to that hellish flu, this isn't too bad.

It is interfering with my work and school though. I was gonna make some very cool stuff for a production, but they're going to have to use what they have already, with a few exceptions I might be able to manage for them if I move slowly and just have them come pick things up from my house.

I am probably going to have to withdraw on medical grounds from my classes. This sinus thing is making me far too foggy in the head to cope with Academia. I am autistic and in my case that means easily overwhelmed by complex stressors of executive function, and I can't cope with being sick and school at the same time. I thought I could, but I can't.

"Sculpt this", "paint that"; these are things that use an entirely different chunk of brain from, "comprehend and analyze this in a literary fashion according to these parameters". It's that Academic level on which I cannot function right now.

And I just got word that my insurance refuses to let me get surgery on Monday. I cannot heal or become healthy until the surgery happens. There is an infection inside the bones of my face that will not respond to antibiotics and my insurance wants "Authorization" before they'll let me get surgery. Which means waiting a few more weeks probably.
So. Frustrating.

Edit, next day: Worked out a thing with insurance whereby I will pay up front for those parts of the surgery they want to "authorize" and would have delayed it for, I get the surgery, then they reimburse me after they "authorize" it.  I mean seriously it's worth it even if I had to pay out of pocket for the whole darn thing.

Day 17 of the Autumn 2015 Sinus troubles.

I've been sick for 17 days now. Only about 3 of those involved leaving the house at all. I am getting bored of my bedroom. *WHINE* I'm a big baby.

 As I mentioned,  I've been diagnosed with Silent Sinus Syndrome, which is a rare condition where the sinuses in the front of one side of the face close up for as long as several years. I also have a deviated septum. This probably is part of why my allergic reactions turn into painful acute sinus infections within about 48 hours, those infections linger for a month or so, then crawl into my lungs to nest for the winter.

Fixing it requires surgery. I don't know when I get the surgery- I have a consult appointment next week. I don't know how long recovery will take either. This is only upsetting for me in that I am sick right now, and that I was going to get a dog.

 I need a dog. I am a sad piece of misery without one. My house is too quiet. No one wakes me up to go for walks.

There's the catch, though. To have a dog, I have to be healthy enough to move around. I am not, so I can't. I am so lonely without a dog. I won't be able to have one until I am healthy enough to move around again, outdoors. I wear a scarf over my nose and mouth in winter here anyway because I almost always have or am recovering form lung infections in winter, so I can't breathe icy cold air.
I wanted to get a dog and go scootering with him in the mornings. I was healthy enough to do it, too. And then this happened. Foo.

You'd think after years of winter bedrest for months at a time, I'd get used to bedrest. Nope. Still as whiny as ever. I hate not being able to at least sit up and do things, but the more I do anything other than lie down or against pillows in bed, the sicker I get the next day. I have to REST.  Well, tomorrow after I do my online test I am gonna play computer games on the couch downstairs. I can be bundled up down there just as easily as up here.


Yes, online test. Did I mention the awesome side of this?
1. They caught the SSS before my eyeball started to sag. That's right, most people only know they have this thingy when their sinus has imploded so much that the bone under the eye socket is dissolved and their eye starts to droop. NOPE NOPE NOPE. So I am very thankful my CT scan showed that I have it before anything happened to my precious eyes. I am exceedingly visual and I need my eyes.
2. In spite of my brain fog making reading hard, I have found an Audio Dramatization by the BBC of my textbook, (still chortling over that) and that's been letting me "study" for the test I need to to take which is  ONLINE. My History class is at the cutting edge, for a college course, and that means our assignments and tests are all ONLINE. I can take the test from right here in my bed! I don't have to haul my weak butt into the testing center!
This is important because to attend our school you must be healthy and mobile. If you cannot wheel or walk a quarter mile or more from parking lots to classrooms, you cannot attend classes. Elevators and a few ramps do not an Accessible Campus make, not if you're too sick to walk long distances but not actually disabled.


I miss going to Aikido. I miss how cool it was to be healthy enough to work out and work hard.
I really, really miss my dog.

In Which I am Still Sick. With Rejoicing?

October 3- I went to Great Western War, an SCA event in Bakersfield CA, and the site was covered in dead Bermuda Grass.
October 4- I began to have a massive allergic reaction.
October 5- I ended up in a hotel with a chesty cough, did not return to the camping event.
October 10- ish. Got a round of Amoxicillin antibiotics for sinus infections while staying in Temecula.
October 19- End of Antiobiotics.
October 26- First xrays. Not Pneumonia.
November 3- New round of Antibiotics.
November 16-24 San Diego trip, some improvement.
November 18-22, Prednisone for strengthening heart and lungs.
December 16- Bad Coughing frequency picked up that night.
December 17- Second Xray, still normal lungs. Aches, fever arcing up to 101.6 that night.
December 18- fever and chills, coughing, etc. Still continuing. Had more blood drawn today so they can do more tests.
All we know is that it's not Pneumonia, almost totally Not Contagious because no one I've spent a lot of time close to has anything like it, and I think it may not be bacterial because I've had the same symptoms, to varying degrees, since Mid October when the sinus infection went away.

So yeah, that's what you've missed, folks.

Also, I have the honor to be the Maid of Honor for my best friend's wedding. I just really really hope I can be better soon so I can actually BE the proper maid of honor. I have a bachelorette party to plan.

In Which I Am Making Little Steps

I was sick sick sick all winter long, so sick I could not often get out of my little home, so now I am a noodle. It's off to Physical Therapy, as of about the beginning of February.
When I started I could not lift anything heavier than maybe five pounds, and that for longer than a few seconds. I could manage one errand per day and come home to fall over on my couch utterly exhausted. I could not go up a set of stairs without pausing for breath. I could not hold my nephew, 11 month old baby Raf, while standing.
35 lb Longbow draw length- only to my elbow. Yes, I've taken up archery. Or I will as I get better.

Now it's March.
Now, I've gained about eight or ten inches to that draw length!
I have gained two pounds of water (Hydration) weight, lost 3% body fat, and gained a few pounds, which would be returning muscle. My tummy has an ever so slightly slack feel to it from lost fat.
I can move chairs. I can do crunches. I can go up a flight of stairs at a steady walking pace. I can hold my nephew for a few minutes. I can carry in groceries from my car, down the stairs and up the flight to my apartment. I can go to Hobby Lobby and walk around for nearly an hour!

Some future goals: Walking the Puppeh, more draw length on the bow, ability to carry full laundry basket down to the first floor laundry dungeon and back up four flights to my apt.
Long long term goals: Heavy armored fighting in SCA combat, being a combat archer, being able to go hiking on the local trails with the Puppeh

I have totally changed what I eat, too. See previous blog about Native inspired health. My philosophy is that you need to work out what your ancestors ate, and eat a healthy moderated version of that. My skin may be light, but my metabolism is Native American, and I do great on seeds, nuts, greens, fruits and veggies, multigrain breads, and lean meats like fowl, fish, and eggs. No starch, no white flour, very little if any refined sugar, very little red meat. No/Less preservatives, no funky artificial stuff, no "low fat" or "Sugar Free" or "Artificially sweetened".

It is really hard to change so drastically, especially since I hate most vegetables. They have such a nasty planty taste. It's especially hard to find anything decent to eat when out and about. I need to plan my menus more carefully, shop more carefully, and cook in advance, then eat things before they can go bad. My lousy sense of time does not help there.

In Which I am STILL Sick. AGAIN. Send Help Plz.

SO I did my week or so of medical rest, and then a week sort of recovering from that and prepping for Thanksgiving, and then the day after Thanksgiving I let myself get waaaay too much exposure to freezing dusty desert air. No, really, literally freezing. I have not been that cold in a very, very long time. A few years at least. As could be easily expected, that night I felt quite dead and I woke up with sinus problems that turned into a full blown infection.

So here it is about a week later and I still can't breathe properly. I've spent all this time in bed, again, with a brief respite on Saturday when I thought I was starting to recover, and I got out of bed for a bit longer than an hour at a time and was able to talk with friends and sculpt a little and even ordered Pizza.

I am concerned that all the health I gained over the summer will have atrophied right off me after spending an entire month in bed. Lots of other people have worse conditions than me, and maybe if it were worse I could accept it more gracefully because it'd feel, I dunno more real? This is like a lousy false half sickness that will not loose its grip, and I am running out of things to do while sick in bed.

I also feel like a loser for whining and needing so much help. I am not able to get out of bed and perform any task more complex than make cocoa or heat food in a microwave. I certainly cannot drive a car right now.
So for a bit there things got kind of desperate because I ran out of groceries and out of laundry and out of room in the bin to put my trash, and my dog was just not getting enough exercise. My friends work and my family are busy.
Luckily I was able to get help- My parents came at night and walked my puppeh, my wonderful friends came over Saturday and helped me with dishes and trash and they brought me bread and milk, and today my lovely Mother came, walked my dog and brought me clean laundry and cough drops.

Now If I could just get some sleep instead of trying to hack up my lungs...
I don't want pneumonia, I've had it once and it's exactly like another month or two of this...