I still exist! Really! Here I am!

Wow, here it is, almost another year later, and I haven't posted anything in forever.
My apologies.

Here's what has happened that you may not know about:

1.  I got approved for disability, but am still fighting bureaucracy since they keep trying to lower the amount I get.  (Even though the amount I currently receive is below poverty level anyway).  But hey, yay for getting approved.  I am now officially disabled.  I mean, I was all along, but at least now it's legally recognized.  Which helps.  Sort of.

2.  I have gone from a desktop computer to a laptop to a tablet to a smartphone.  Funny how the screens get smaller the more advanced it's supposed to be.  My favorite is the tablet.  It's small enough to be perfectly portable, and just big enough to be cozy.  The phone is more portable, but hitting the tiny buttons makes me feel like I'm typing with bratwurst fingers.

3.  It looks like I hadn't mentioned this in my previous posts, which is weird, but just in case, I'll go ahead and say it:  I wear custom-made leg braces now.  I can hardly walk without them.  I'm so thankful to have them.  Very grateful.  Also I frequently need one of those walker-wheeled things called a rollator.  It folds up and fits in the trunk of my car-- BARELY.

4.  I ordered myself a new wheelchair on eBay last week, and it got delivered a couple days ago.  It's still on my porch, in the box.  I need to figure out a way to actually carry it in.  The box is huge.  I meant to take a picture of it, to show people how frickin huge the box is.  Instead of the rollator type, this is an actual wheelchair.  Because I can tell that if things keep getting worse, that's what I'm going to need.  It's ok.  That's just the way things are, and I accept it.

5.  I fell last week, right in the middle of McDonalds.  In addition to my bad feet/ankles, I've also got a bad left knee.  (Inherited that from Mom.  Thanks, Mom.)  It's very weak and unstable, and has gotten rapidly worse in the past couple months.  So when I got up from my table last Wednesday morning, I took just a couple steps.... and my knee twisted and gave out.  I fell flat on the hard tile.  There was a bruise on my leg about the size of a footprint.  I didn't break anything, but probably tore some soft tissue/tendons/whatever else is in there.  For awhile there, I could hardly stand up.  I'm doing a little better now, but I will always have to be extra careful.

6. Every now and then I get in a mood where I want to crochet things.  I get a whole bunch of yarn and make stuff.  I keep going til I can't stand to look at yarn anymore.  Then a few years later the cycle repeats itself.  Two of the blankets on my bed are ones I made.  (And two were made by Mom, who also has crochet moods of her own).  A couple weeks ago, I finished a blanket and gave it away.  It was a nice surprise, and a fun way to say thank you to someone who has been kind to me.  I plan on making a few more in the next few weeks.

7.  Last year my pipes froze and broke in the extreme cold weather.  Here's a picture.  I'm hoping the same thing doesn't happen this year.  I've got the cabinet doors open with a heater pointed at them (from a safe distance) whenever the temperature drops into the danger zone.

Send Happy Thoughts, or Good Vibes, or whatever you have in the spare closet you're not currently using

Hey, it's been a long time since I posted.

Here's an update, in case any of you are still out there clinging to the dusty cobweb-filled corners, bravely fending off starvation.

I'm going to say this as briefly as possible... (though usually when I say that, I end up writing a small novel).

Tomorrow morning will involve a lawyer and a judge.

My foot/ankle has a deformity called Equinovarus.  Both feet have it, but it's a lot worse on the right foot.  It's something I was born with, but it's gradually gotten worse as I've gotten older.  This is what's been happening on top of all those other issues I've blogged about these past few years.  The plantar fasciitis, the tenosynovitis, blah blah blah.
Equinovarus means "turned inward and curled under".
Here's a page about it.

I should've gotten surgery for it when I was a baby, but my parents didn't get it done because the doctors (wrongly) told them I might just "grow out of it".
Doesn't work that way.
Just gets worse.

It's very hard for me to stand now, very hard to walk.
I have leg braces on both legs, which helps a lot but still doesn't fix the whole problem.

The first kind of brace I wore didn't help at all; my foot wrenched inward with such force that it actually warped the brace.
I had to get heavy-duty leg braces custom-made for both legs.
I wear these every day of my life, and will continue to need them every day for the rest of my life.

I have a heavy-duty walker, which I keep folded up in the trunk of my car at all times.
I also own a variety of canes, for places where the walker would be too cumbersome.

My disability hearing is tomorrow morning at 10:00.
My dual claims involve Chronic Migraines and Equinovarus Deformity.
I got rejected at first, so now I'm taking it to the next level. 
Got a lawyer.  Going to have to fight.


I took some pictures of my right foot, so the judge can see what I look like without the leg braces.  I sent the pictures to my lawyer this morning, and will also be taking the pictures with me in case I need to show the judge personally.

I might as well post them here, so the rest of the world can see.
Don't look if you're squeamish about feet.

In the first picture, you can see my knee off in the bottom right corner, which shows just how much my foot warps off in the opposite direction.

Anyway, think of me tomorrow morning (Thursday 9-10-15), at 10:00 am.
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The Dark Alleys Of Trivia Crack

While spending so much time off my feet (either in bed or sitting at a table), relying on the inanimate mercy of my pain meds and looking forward to my next doctor appointment, I have gotten totally hooked on Trivia Crack (on Facebook). This surprises me because I'm absolutely terrible at Trivial Pursuit, yet Trivia Crack is do-able.

It irritates me when weird bugs happen (like the question being marked wrong as soon as the screen comes up, without even giving me the chance to click on anything-- for a question I knew the answer to-- especially when this happens at a particularly crucial moment in a 5-5 game when the person then goes on to beat me), but for the most part I like Trivia Crack.

I finished last week at the top of the board and it looks like this week will be the same. So far this week I've answered 1,290 questions right, and am aiming for 1,400 before the weekend's up. Pretty cool, huh?

My favorite thing is that the opponents can be random strangers, which kinda softens the blow if I lose. It's easier to brush off a loss to a stranger because I can just shrug and reassure myself that I'll never "see" them again.

Example: "Meh. I lost. Oh well. Maybe I'll win the next one, especially if I have these cookies over here."

With friends, I've noticed that it's different.
I've begun noticing that I take it WAY more personally than I should.

Example 1:
"You just beat [insert friend's name here]! Congratulations, now you can breathe. You will be permitted to live another day. Enjoy the oxygen... for now."

Example 2:
"You just lost to [insert friend's name here]! What were you thinking? This will haunt you forever, even during traffic jams and migraines and moments on the toilet after too much Taco Bell. [Friend] has now lost 12% of their respect for you and will be significantly less likely to donate any kidneys or trapezoids or cookies you might be needing any time soon. The shame has permeated the room and cannot be dispelled by Febreze. (Much like the Taco Bell). Wanna play again?"

So, once this "round" is over, I think I'm going to spend the rest of the time insituting a "Random Opponents Only" policy.

No offense to any of you; it's just that I need the reassurance of knowing that I'll never have to actually meet these people and will never have to explain why I honestly have no clue who played for what team in what year and ran eighty thousand touchdowns in 2003 while wearing blue and gold with a rabid three-legged skunk on the helmet. 'Cause, ohmygoodness, who even pays attention to stuff like that, right?
You might even say it's... "Trivial".  ;)


So keep those kidneys and trapezoids and cookies warm and ready for me, ok?

I don't anticipate needing extra kidneys anytime soon, so you might want to focus on the other two first.

At least I haven't grown two heads and twelve toes yet...

 Just got back from the doctor. The MRI results are back.

The good news is that they didn't see any rips or tears in the muscle.

On the other hand, the preliminary diagnosis is something called tenosynovitis.

Often it happens in hands/fingers/shoulders, but for me it happened in my ankle.

The challenge now is to find a way to heal it.

When it happens in hands, they just put a splint on it and let it rest, and after a few weeks it's perfectly fine.

For crooked feet like mine, the situation is different because there's no way to completely let it rest. Even if I completely stay bedridden for weeks, the problem is likely to return the moment I start walking again.

My current leg brace just isn't working the way it should, so I have an appointment with a specialist on Feb 4th. She will (hopefully) be able to recommend a better leg brace which will actually keep me steady enough to heal better.

Tenosynovitis never heals if the tendon keeps getting strained. Repetitive injury (like me walking on a crooked club-foot which points inward AND rolls over to the side with every step) just makes it worse.

I'm not going to resign myself to being bedridden quite yet, but I'll be walking extra carefully for awhile, and we'll see what the specialist says on Feb 4th.

Additional medical update:
Also got the results of the sleep study I had a few weeks ago.

I only got about 3 hours of sleep in the hospital that night, but wow.
In that period of time, I had 96 respiratory disturbances, and stopped breathing completely 25 times. (!!!!!)

All night long, I only entered REM sleep for 16 minutes. (The normal amount would be about two hours).

At one point, my oxygen level was down to 80% because I stopped breathing so many times.
This is apparently the way I sleep EVERY night, which explains why I never feel like I get any rest.

So there's definitely a problem.

My next appointment with THAT specialist is on Feb 13th, and my 2nd sleep study is on Feb 20th. They're going to fit me to one of those C-PAP mask things.

Deja Vu in handy cartoon form

Update on the foot/ankle stuff

Had doctor's appointment this morning.
Doctor apologized for the mixup with the x-ray.

Currently we're fighting bureaucracy to get Medicaid to pay for the open MRI. (The open MRI I need is in Indiana, and Michigan Medicaid is currently refusing to cover it because it's across state lines.)
Everything's on hold until that gets worked out.


I also got an appointment with a specialist in February. It's one I saw once last year. Possibly she can recommend a better leg brace, or get one custom-made for me.
I'm hoping I don't need surgery, but if insurance can cover the cost, I guess that's a possibility.


In the meantime, I got a new prescription for some stronger pain meds.

They're narcotics.
Wooooooo.

Just tried them.

My face is numb, but my ankle hurts about 75% less.
Possibly 76% less!

Really? Yes. Really.

Another long rant from an upset person...
The next chapter in the "Janna's Feet" saga.

Ugh. I called the doctor's office today, because it's been TWO WEEKS since the x-rays, and no one called me about anything.
What they said two weeks ago was that they'd call me as soon as the results arrived. If bone damage was confirmed, we'd proceed with treating it. If the problem was non-bone-related, we'd move on to the next step, which is scheduling an MRI.

So I've been waiting all this time for those results, and hadn't heard anything.

When I called today, the desk person seemed surprised to hear from me, as if they weren't even quite sure who I was.
They put me on hold for a long time.

When they came back, they said the x-ray results were "stable", so they'd decided there really wasn't any need to call me back at all.

"Stable? ... Meaning what, exactly?" I said.

"You have a stable degenerative disease," she explained. "It's no different than it was before."

"Yes, it IS," I emphasized. "It's getting worse. I can barely walk. I hobble around on two canes. The pain medication isn't working. We need to pursue this."

"....Okay?" She said, unsure of what exactly to do.

"We need to pursue this," I repeated. "We can't just ignore it. It's getting worse."

"....Okay?" She repeated. "Well, I can tell the doctor if you want, but she won't be able to see you for quite a few days."

"Wasn't anyone going to call me and tell me about the results?" I asked. "How did I just fall through the cracks like that?"

"Well," she tried explaining, "If the results show that there isn't really a problem, our policy is that we DON'T call the person back."

My mouth hung open in disbelief. "I was told I'd receive a call one way or the other."

"...Okay?" She repeated.

"If the x-rays really showed no problem, we were supposed to move onto the next stage, which involved an MRI."

"...Okay?"

I sighed, realizing I was getting absolutely nowhere. "When's the earliest I can make an appointment?"

"Next week... January 6th.... 9:30."

"I'll take it. Let's please do that."

So... here we go.
Again.

(*ahem*) Yeah... ok.

https://www.youtube.com/watch?v=6YDTfEhChgw

Also, my head hurts, but let's just complain about one thing at a time.

It's been over a week, and I still don't have my x-ray results yet.

Still hobbling around on the cane, realizing much to my chagrin that the new pain medication doesn't really work.

What's really going to annoy me is if they call me and say "Good news, the results didn't show anything, so you're just fine!"

Obviously everything isn't fine; this hurts so much it's apparent that something is wrong.  I just need them to identify what it is.
.

Good thing he's four tables away, I guess...

Direct quote from the little kid sitting about four tables away at McDonalds:

"MMMmmmoooooommmm!  Mom! I just farted!  I just faaaarrrted!!"

Additional quote from him, a few minutes later:

"Moommmm!  Y'smell that?"

Update... in case any of you wondered how it went

Oooookay. For any of you who read my angst-filled ankle post and wondered how the doctor appointment went, here's the update.

They saw how miserable I was, and they listened to everything I said.
The first step was x-rays. (Both feet, plus right ankle).

I just left the hospital a few hours ago.

The front desk saw me struggling on my two canes and immediately made sure I had somebody to take me to the x-ray room in a wheelchair.
X-rays were a bit awkward but they went all right, I guess.
When they were done, they wheelchaired me back to the front entrance, and I hobbled back to the car with my canes.

The doctor realized that my previous anti-inflammatory medication wasn't working at all, so she called in a prescription for something different.
(I haven't picked it up yet; it isn't ready. Believe me, I'm anxious to try it out.)

The next step is to wait for the x-ray results.
If my problem involves muscle instead of bone, I'll need to have an MRI.
If that's the case, I'll have to drive down to Indiana for the special "Open MRI" I used last year. (The place where they found the enchondroma tumor in my left fibula).

For now, I guess I'm content to wait and see what they say.
I'll get my new pain meds (as soon as they're ready) and take them while it all gets figured out.

I'll keep basking in the glow of free public WiFi, and hobbling with at least one cane to get my free refills. This way I can keep posting updates for those of you who actually read down this far.

If you see me there, please come over and say hi.
Bonus points if you bring cookies.

Me and my ankle

I posted this to Facebook, and figured I might as well post it here too.
Bear with me.

Probably no one will take the time to read this except my close friends, but I still need to write this so I can vent and cry a little.

My ankle's gotten so much worse in the past few weeks. I've had problems with it ever since childhood, but nothing even remotely as painful as this.

When I had it x-rayed last year, the doctor told me it was likely a form of club-foot that I've had my entire life. Mom didn't take me to a doctor for it when I was young, so it never got treated. (There are various reasons I'm not able to have surgery for it, which would take too long to explain right now.) They told me it would keep getting worse as the years went by.... they were right.

It hurts so bad it feels like I actually broke something or ripped something.

I mentioned it the past two times I went to the doctor, but they didn't do anything. I'm not even sure they wrote it down. It was like "Meh, let's just ignore it and see if it goes away."

At the concert last Friday I had to wear my usual leg brace, plus I used my cane to hobble around. Embarrassing to be on stage and have hundreds of people seeing that.

The weekend was so bad I could hardly get out of bed.

In the privacy of my own home, I have to have a cane in each hand just to make it possible to move from room to room without too much pain. When I move down the hallway like this, I feel like some giant four-footed animal... or maybe one of those big robot things from Star Wars (Imperial Walkers).
The only thing that makes walking remotely bearable is the canes, plus wrapping the leg brace extra tight so my ankle can't wobble around too much. If it wobbles or bends at all, it's excruciating.

I called the doctor's office this morning and explained to them that I need to make an appointment right away to get this diagnosed and treated.

My appointment is tomorrow morning (Tuesday Dec 16th) at 11:00am.

I hope they take me seriously this time.
If they ask "So, how long has this been going on?" I will make sure to say "Y'know, I've mentioned it the past TWO times I've been in. Look in the book and see when my two previous appointments were. I told you about it at least twice, but nobody did anything to help."

In addition to the right ankle issues, I dropped a shampoo bottle on my LEFT foot and hurt that so bad I might have broken some of the little bones in there.
There's no "good" foot to step on any more.

I'm tired of it hurting just to walk twenty feet away.
In the middle of the night, when I have to get up to go to the bathroom, I've actually laid there and cried for awhile, dreading the inevitability of having to get up and hobble to the toilet with a cane in each hand so I can pee.

I usually try to be a peaceful, fun, good-natured, semi-humorous person who is pleasant company, and most of my friends have no idea just how bad things have gotten.

I can't handle this for much longer.

Because apparently the gas station needed a sign...

Y'know, whatever this sign is saying, it's probably a good idea to pay attention.

I know it's around here somewhere....

Because I'm just that helpful...

Today while sitting in my favorite spot at McDonalds, simultaneously drinking in the free WiFi along with a magnificent beverage, I was approached by a guy from one of the nearby tables.

"Can I ask you a question?"  He said.

"I... guess so," I answered, hoping it wouldn't have anything to do with trigonometry or ebola.

He wanted to know how to get online; he and his wife were trying to use the WiFi but were having trouble connecting.  I explained the process as well as I could, and he went back to sitting with his wife.

Awhile later, he got up to go to the bathroom.  My table is right next to the bathrooms.
When he came out, I considered asking him if he was able to get the WiFi to work. 

I ended up not asking.

It dawned on me that when you're a guy coming out of the bathroom, the last thing you want to hear is a stranger asking "So, did you get it to work all right?"
.

But if I get iron lamb, I won't have enough room left for pure belly clearance

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Also, I see that the symbols for Kungpo Chicken and Cashew chicken are exactly the same.  So are the symbols for fish-flavored shredded pork and pure speculation meat.
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I wonder if they have egg rolls.
If they do, I wonder what they call them.