Stuff about Open Carpal Tunnel Surgery and of course, the fibro...

First, let's cover the surgery thing. I didn't- as I'd mentioned in that video- update anyone after the cast thing came off my hand. So, let's start there... sort of.

If you're on my Facebook, you know how it has been going, because I did not one update, not two updates, not three, or four, not even five (which was the start of the second surgery). I did six, seven, eight, nine  updates on my Facebook. All my posts are public, so you should be able to see them.

My first surgery was amazing. Every single day felt like an improvement and within two weeks, I got most of the feeling back in my fingers. Just the very tips of my index and middle fingers are a bit tingly. But, I can feel things with them- including hot, cold, wet, or dry. My second surgery wasn't quite as fun. The pain after surgery was much, much worse. I spent a lot more time elevating and icing than I had to with the first. Even now, I sometimes have to wear a brace to do things- but the weird thing is that I don't have to wear any kind of brace to sleep with anymore. I've slept with braces on my hands for more than ten years. I was worried I wouldn't be able to fall asleep without them, but I adapted very quickly.

Here's a list of things I wish I knew ahead of my first surgery-

1- if you take a fistful of pills in the morning like I do, get yourself one of those days-of-the-week/month pill holders and set that shit up BEFORE  you go in for surgery. I didn't. Didn't even cross my mind. I take some vitamins (prescribed) and some other blood pressure and edema-related pills every morning. And I take a small amount of pills at night (pain meds, muscle relaxers, fibro med).

2- Get bottles without a childproof cap. My pain meds were in the super-dynamic-engineering type of bottle. I had serious problems getting into my bottles. The spouse- you know him, The Disabled Guy- only has the use of one hand himself, so the two of us trying to wedge a childproof cap off a Vicodin bottle was pretty hilarious... not as hilarious as the two of us one-handed wonders trying to get my giant DDD-cup bra on in the morning. Boy, THAT was an experience in pain and hilarity.

3- Get frozen meals or pre-cook/freeze meals. Not everyone is as lucky as I am to have a disabled spouse who is always home. He handled cooking okay and we had takeout and frozen pizza a lot. (he doesn't like to cook very much).

4- Train all of your pets ahead of time to bring you shit. Not actual shit, that's gross. Like, food and drink. Ice packs. Pain medicine. That remote control you kept dropping behind the sofa because you thought setting it on the pillow next to your swollen hand was a good idea.

5- Chihuahuas make good nurses. At least, in THEIR mind, they do.

Here is a link to a photo of  my left hand with stitches visible, and the right one with stitches and bruising. Here's one of just the scars (at four weeks and six weeks). They're not so bad right now, they look more like a slight discoloration than surgical scars.

Now that's out of the way, let's move on to the fibro thing. I think my Generic-Cymbalta-for-fibro has stopped working. I've been dealing with almost-daily flareup pain for just over a month. I have my semi-annual followup appointment two days from this typing. It started just like last time- I couldn't tell if it was the weather or if I was having issues with the medicine. I even thought that it was related to my hand surgery because that second one sucked a lot more for pain/issues. But it isn't that either. I didn't try to get in at the VA earlier, because I already have this appointment scheduled, so I just let the days drag on till now.

That said, the other day, I picked up some potted flowers at that big orange box store because it'd been SO LONG since I held my beloved Nikon in my hands. And I got a few really nice macro shots of flowers. And now, I share those with you, because what better way to end a blog update full of Facebook links and Mom Jokes? Enjoy!

This is the first batch of photos I have taken since my open carpal tunnel release surgeries. I did do a few snowflake macros in February, but I still had the cast on my arm, so it wasn't much effort to hold the camera. This day, however, I learned just where the pain was internally.

Despite the pain in my hand (which I controlled a bit by wearing a soft Neoprene wrist brace), I loved being outside to take photos again. In the weeks leading up to my surgeries (which were January 22nd and February 5th), I didn't have much chance to do a lot of photos (drab weather, lack of indoor flowers).
















This is the fingertip of my pinky finger. For size reference.

Well... this is a blog post.

As my last post mentioned, I had to get a test done- EMG. WELL... turns out, that's one of the MANY things that the VA hospital will not see me for- and for good reason, really. I'm not a veteran. I'm the spouse of a 100% service-connected disabled veteran. While I can get almost everything I need done at the VA, there are a few specialties that they won't cover because they're high demand for actual veterans. And that's fine. What's not fine is that the list of things they will and will not cover changes often. I never know what's going to come up as not covered. BUT- the VA doctors can give me a consultation letter to see a non-VA doctor and the CHAMPVA insurance will pay for it like any other health insurance (meaning we have a cost-share and deductible).

So, that call I was waiting to make that I mentioned before? That was the Patient Administrative Services calling to tell me they weren't going to let me see a rheumatologist because they couldn't allow me to be a "new patient". Except I'm not a "new patient". I saw the rheumatology clinic for my fibro diagnosis and initial treatment. Then they kicked me back to my GP for the maintenance care. If I had been to the rheumatology within the last two years, I'd be allowed back... but their policy to kick me back to the GP... you see the circle-jerk in that whole thing? Yeah.

Anyway, after I got off the phone with them, I called the GP clinic and told them that I'd need a consultation letter. When I got the letter, I called the local place I go to when I need to- and it turns out, you don't even SEE a rheumatologist for this in the real world! I had to go to an ortho. The good thing is, the ortho I had to see is in the same office as my knee doctor. So, from that visit, I was scheduled for the EMG on January 14th. Then this morning, I got a call saying they had a cancellation for this afternoon.

One piece of advice- do NOT Google "Does an EMG for carpal tunnel hurt?" because you will find the scary stories from people who were either exaggerating or complete and total wimps. The test wasn't painful, really, just uncomfortable. And kind of weird. There are needles involved but the needle thing didn't even hurt. The weird cattle prod thingy- that was worse than the needles.

Basically, they put these sensors on your hands in different places and then use that weird cattle prod thingy to send a jolt through various nerves from different places in your arm/wrist. After that, there is a session with a needle in specific places to test muscle activity and such. You get to hear your muscles. I didn't even know my muscles made noise. And let me tell you, mine were noisy bastards!

Because I'm me, I took some photos. But because I'm not an asshole, I won't show you the photos without warning. They'll be in links. Click them if you want to, but I will tell you what they are before you click it.

This is the machine used in the EMG.

This is my hand with some of the senor doodads on it (they move those around at different points of the test).

This is the needle being held up by the doctor so I could take a photo. It is a really thin needle and I barely felt the needle at all.

This is that same needle in my forearm. The doctor took this photo with my phone for me. There is no blood or anything, just the super-thin needle in my arm.

This is the bruise I got in my biceps on my left arm. I don't think I have any other bruises and it doesn't even hurt.

Now see? That wasn't so bad! And if you need one of these, don't worry! You can't even see them putting the needle into your muscle and I could barely feel it.

As for the results of this test- I have severe nerve damage in both hands. I am definitely going to have surgery for it because I really don't have much of a choice at this point. And because my nerve damage is so severe, I will probably always have numbness in some of my fingers. The surgery will help, but it can't fix what's so far gone.

NOW... a little discussion about the fibro thing. Because of the holiday or because I miscounted- I was without my fibro medication for three straight days. I took my last pill on Sunday night. On Monday, when it didn't come in the mail, I decided to give it one more day, because of the holiday. On Tuesday, when it didn't come, I called the VA. It turns out it was mailed out on Monday afternoon. I got it today. However, I couldn't take it till I got home from all the running around I had to do today. So, I did the EMG, I drove home to pick up the Disabled Guy to drive him to Rockford. Oh, yeah- last Thursday (New Year's Eve), he was driving down a road and a woman pulled out in front of him. He was going about 45 MPH and had no stop signs or lights. She was turning left onto the road from a stop sign. How she didn't see the full-size pickup truck with running lights is beyond me. He's fine, but his truck has been officially totaled.

So for the last week, I've been dealing with insurance companies, chauffeuring the Disabled Guy around, juggling my doctor appointments with his anti-coagulation appointment, AND dealing with life without fibro medicine. Let me tell you- I'd forgotten how much this disease sucks without that medicine. And stress suuuuuucks even harder. So, today, I had to drive a half hour to one town to be zapped and prodded and stabbed, then drive the half hour home, get the Disabled Guy, drive forty minutes to where his truck had been towed to get his big-ass toolbox that was mounted in the bed of his truck, then drive him the forty minutes home, and THEN go to the grocery store. Then... I had to cook dinner.

But I digress... or do I? I'm not sure what I'm doing. I'm on my full amount of nighttime medication right now. Let me sum it up a little...

Good news: I was moved up a whole week to get the EMG.

Bad news: I have severe and permanent nerve damage in my hands. (in case you forgot, I kind of use my hands for, well, everything. But most importantly, I use my hands for photography).

Goo- No, wait... bad news: I have to have surgery.

Good- No, wait, still bad news: the Disabled Guy's truck is totaled, we have to wait for the insurance company to settle things with the lien holder before we can get him a new vehicle.

Good news: (no, really!) it should only be a couple weeks before we get the check from the insurance company to get a new truck.

Bad news: I have to put up with the Disabled Guy not driving himself around for another few weeks. He can't drive my vehicle because it isn't big enough for him to tuck his disabled half out of the way so he can reach everything with his un-disabled half.

Good-Bad news: The recovery time from a carpal tunnel surgery can take up to three months. The reason that's good-bad is that I have plenty of time between now and May (the Janesville Ren Faire), but the bad part is that because of my fibro, recovery time may be longer.

 To end on a better note, here are some macro photos I took of some flowers (I bought myself a bouquet of flowers from the grocery store and a couple days later, a friend dropped by and gave me a Yule basket of goodies and some flowers). Also, I took some really cool photos of the Disabled Guy's train set. If you'd like to see those- here's a link. Some were taken with my phone, some with my camera. (the camera shots are awesome!).

And now, on to the flower macros! I took the two flower vases outside while the sun was still out to get a handful of photos. The sunlight was filtered through some thin, white clouds.

What a refreshing change of pace!

Wisconsin weather was doing the usual thing it does this time of year and it triggered a bit of a flareup. What's the thing it does this time of year? That would be shooting up 30° (Fahrenheit) in a 36 hour period, erratic humidity, and then dropping to below-freezing at night. But, the flareup was more of the "drag me to the floor" exhaustion than pain. There was pain, but not as much as a "normal" (haha!) flareup.

"But wait," you say, "You said something was refreshing... well, what was it? WHAT WAS SO GOL'DURNED REFRESHING?!"

Calm down, Shouty Pants. The refreshing bit was arthritis. Yeah. My right hand was sore and a bit achy. ACHY. I had arthritis pain in my hand! Just your normal, run-of-the-mill arthritis pain in my knuckles! My fingers were a bit stiff too. STIFFNESS and PAIN NOT ASSOCIATED with fibro! I was so happy, I almost cried. But instead, I had ice cream.

I'm always amazed when something feels normal. I spend a lot of days weighing my energy levels against the pain/lack-of-pain and how much I need to do. But this last little flareup, I sat down in the living room, on the sofa, covered in Chis (say that out loud!) and found myself rubbing the knuckles on my right hand and my brain didn't automatically go "FUCKIN' FIBRO!" My brain said: "What the hell, man? Arthritis? Why the hell- OH MY GOD! THIS IS ARTHRITIS!"

I tell ya, man, it's the little things.

So, the new medicine seems to be working (as long as I don't fuck with things!) and aside from the mind-numbing exhaustion, the flareups haven't been terrible. I'm also still having pain in my foot from the plantar fasciitis, but it comes and goes. I also still have neuropathy (painful numbness) in that foot, too... but dammit, let's stop with the negativity.

I've got 67 days till the Janesville Renaissance Faire.

I've got 123 days till the start of the Bristol Renaissance Faire.

There are 207 days till the Stronghold Olde English Faire (and my birthday!).

And 214 days till A Gathering of Rogues & Ruffians! (date subject to change)

AND about 255 days till Teslacon!

Whew... those are my standing events. I don't know what else I have going on, but those are the important things.

And yes, I DO happen to have some photos to share. That's the name of the blog- "Pahz Lives with Fibro and Talks about Photography". (although, technically, I should call it "Pahz Lives with Fibro, Talks about Photography, and Never Shuts the Hell Up about Renaissance Faires.". However, the joke's on you! Teslacon is a steampunk event!!)

So, on to some unrelated photos-

Gypsy-



Luna-



Jasper-



Bruno-



And a few shots of the sparrows who live around the house. And in various small openings in the house.

I put the PRO in PROCRASTINATION and PROGRESS!

Yup. We're up in the middle of the night again. And when I say "we", I mean me. And maybe you. I don't know your life, those hidden cameras stopped working ages ago. But mostly me, because I'm the one here right now. So let's get on with this.

Why have I procrastinated? Well, I was going to update the new medicine progress a couple of weeks after last month's post. But then I thought: "Hey, dumbass, wait till after your followup appointment on January 15th. That'd make more sense than writing something now. Duh. You're so stupid." (my self isn't very nice to my self in these conversations. Don't worry though, my self talks about my self too, so that's just the relationship they seem to have with each other.)

So, I waited. Then I had my appointment. And then I waited another five days because WHY NOT!?

Well, a couple weeks before my appointment, I seemed to find the sweet spot of the medication. I take the generic Cymbalta at night, with one 10 mg tablet of Cyclobenzaprine (muscle relaxer), and my nightly Hydrocodone (two to three tablets). In the morning, usually shortly before lunch (so, between 10 and 11 AM), I take two Hydrocodone. And then, for five to six straight hours, I feel good. (not including this utterly stupid condition in my foot).

You see, normally, I'll cook dinner. That takes anywhere from a half hour to an hour, depending on what we're having. It also uses my hands (because I don't use instant potatoes, because gross) and I'm on my feet the whole time. So, by the time I sit down to eat, I'm exhausted and sore. Then the Disabled Guy cleans up the kitchen after dinner.

I see the hilarious irony to ME not being able to clean up the kitchen, but the person I refer to as The Disabled Guy does. Yes, he's disabled, but his disability doesn't cause him physical pain. But back to the story...

I noticed something good was happening when I cooked dinner and cleaned up after myself as I went along. And when it was over, I sat down to eat, slightly tired, but not kicked-in-the-face exhausted. And I did the dishes after dinner.

A few days later, I baked cookies.

A few days after that, I baked the Disabled Guy's birthday cake and he didn't even realize it when he walked into the kitchen while it was in the oven, because I'd cleaned everything up and put it all away.

Then, I went to a photography workshop in Chicago. (spoiler alert- it was awesome). You want the link to those photos? I know you do. Here's the link to ~Cupcakes and Instaprints~

Then I baked cookies again. I went to the store. I did things. And as long as I kept up that cycle of medicine, I was able to do things in large blocks of time in the middle of the day. I seem to have found the exact balance of pain medicine for now. At my followup appointment, the doctor decided to keep everything the same (medication-wise) and when I feel confident enough to handle the task, I can try walking for exercise again (there's ice out there right now. As good as I feel, I don't want to slip on the ice and completely fuck up my cyborg knee).

The only thing that is still pissing me off is that goddamn left foot. There's not much we can do about it because I'm taking the vitamins associated with helping neuropathy and I've gained a little sensation back in the numbness. But I'm double-cursed with that stupid thing because not only do I have fibro, I've had my knee replaced on that side. And that can cause an issue with neuropathy.

Sure, I still have bad days- I mean, look at me, I'm here... middle of the night- but the good days are coming in longer stretches and lasting for longer stretches. I don't dread going to the store as much as I did before. Now it's more of the "Great, there are people in there" and less of the "Great, I have to walk in there" than it was before.

I can tell you exactly why I'm awake tonight. It snowed. After several days of our temps in the low 40s (that's in Fahrenheit) and with humidity well over the 50% mark, it started to snow this evening. And I was in bed with my hands throbbing from the pain and my legs were on fire. They still are. Not literally, of course. Just in that itchy-one-million-hairy-legged-spiders-trying-to-escape kind of way. On the plus side of this ridiculous insomnia, I'm washing one of my super-soft blankets. One of the cats decided it had been clean long enough and hoarked a hairball on it- which I saw BEFORE climbing into bed earlier- so it needed to be washed. And the lack of that blanket contributed to the itchy-on-fire leg thing. One blanket did nothing to ease any fibroinations (just made that up, right now. You're welcome!).

So, good things. Yay! Fewer bad things. Yay, again! Photography. Yay! Oh, and I get to see a bunch of my faire family in a week and a half. I'm going to an event called Military History Fest where a bunch of them are re-enacting military historical stuff. I mean, c'mon, it's right there in the name. So, Faire Family! YAY! MORE PHOTOS! YAY!!

And, now I leave you with some photos from my Instagram... because you deserve to DIE from the cuteness...

Gypsy. (She doesn't have a "full name", but we call her "Gypsy-doodle" & she answers to "Doodle", "Poodle", "Dood", "Poopy-Puppy", "Poopy" & the kids call her "Doodle-head" sometimes). But she's a dignified wittle poopy-puppy. #GSD #germanshepherd #dog #pet

A photo posted by Pahz (@pahz_on_instagram) on Jan 20, 2015 at 9:25am PST

"I'm not looking at your, therefore, you cannot see me." ~Luna #chihuahua #dog #pet #sassy #somuchsass

A photo posted by Pahz (@pahz_on_instagram) on Dec 30, 2014 at 10:01am PST

Bruno and Jasper. All the dogs were in this shot before Instagram cropped it. #chihuahuas #dogs #pets

A photo posted by Pahz (@pahz_on_instagram) on Dec 29, 2014 at 9:04am PST

Gregg the Girl Dog with the Boy Name. (We just call her Gregg). No big story, just adorableness. #chihuahua #dog #pet #sunshine

A photo posted by Pahz (@pahz_on_instagram) on Dec 30, 2014 at 9:52am PST

Houdini (aka: Beefy). She could have been living with a jouster and his family, living a fun life and traveling the country with horses and other dogs, but she wouldn't bond with anyone but him. She was scared of him in his armor, even if he was just wearing the greaves. So, after 2 months of trying to acclimate her, he sadly had to give her back. Now she lives the boring life with me and the Disabled Guy (and the rest of the dogs. #chihuahua #dog #pet #sunshine

A photo posted by Pahz (@pahz_on_instagram) on Dec 30, 2014 at 9:48am PST

I can't let this disease win...

Firstly, let me say that the new drug still seems to be working well. I've had a few rough days now and then, but those days were also pretty bad weather days (high humidity, thunderstorms rolling through, and in one case, we were actually being rained on at faire). That said... let's go to the title.

Last Sunday, I was in a full-blown flareup. Every muscle ached, moving caused me great pain, and walking up and down the hill at Bristol was damn near impossible. Damn near. Every weekend this season, my left foot swells up along the bottom (the outside edge down to and including the heel). I've tried all manner of insoles (I have doctor-given orthodics and for some reason, they're causing bruises on the arches of my feet and I've had them for five years now). I've been doing one day with shoe inserts and the second day with only the soft double-foam inserts.

Now, I try to do things during flareups. Nothing serious- I'm not going to mow the lawn or participate in a power-lifting competition- but you know, just stuff. Mostly it's photography stuff- like taking macro shots of flowers and raindrops or even going to faire.  There is no way I will let this disease keep me from a faire day. I get asked by folks now and then why I do it. Why do I cause further pain to myself? (it's usually said in a "you're so strong" capacity, not in a "what the fuck is wrong with you, lady" way).

If I don't get up, if I don't go to faire, if I don't take my photos, or put on garb, or do any one of the things I do during a flareup, then the fibro wins. And I don't want the fibro to win. Fibro sucks sweaty donkey balls and I can't let something that sucks sweaty donkey balls have what little joy I find in life.

And honestly, take a look at these photos and tell me- why do I do what I do? Because I fucking love to do it. I love these people and I love what they do and I want to be a part of their world. And they care, because they're awesome people. Getting through a flareup, surrounded by people who actually care and who also make you forget how stupid this disease is for even a minute- well, goddammit, they're worth it. They make the pain I'm in at the end of the day worth it. I want to be with these people, I want to share their amazing talents with the world, and I want to be needed.

However...

There are plenty of photographers at the faire- official and unofficial. The faire doesn't need me to take these photos and hell, even if I didn't show up, the faire would go on and these moments would still happen. But if I sit here at home, whining and lamenting how much pain I'm in, instead of walking around the faire and capturing moments, well, that might as well be the end of me. I don't want to give up. I may end up in pain, I may cause myself extra pain, and my left foot might look like a flipper for three straight days... but goddammit, I am not letting this stupid disease take one more thing from me. It has taken enough! NOT ANY MORE! (that's a silly joke with my kids- "not any more").

And, with that I say good night and I'll see you at faire. Enjoy the tsunami of ren faire photos.