Mr. Pants Says

Keeping Up, Sorta

Major things that have happened recently are:
-we refinanced the house for 1.5 points less than we were paying, saving us nearly $50/month.
-got in to see a great, compassionate pain management doctor, who looked at my MRI films and immediately wanted to hug me, it was so bad. We tried an epidural shot to reduce the inflammation, and it worked for about two days, and then went back to being just as bad as before the shot, with a little bit more numbness in my toes than before the shot (or numbness that I noticed more once it had gone away, and then returned)
-got referred to a neurosurgeon because conservative measures wasn't going to fix the issue, and it's not recommended to keep getting epidural shots as the chances for worsening the damage being done by an obliterated disk at L5-S1 is high, especially if the benefits only last a couple of days
-got scheduled for lumbar surgery, not a fusion though, faster than normal because I am just lucky like that, for August 15, sooner if there is a cancellation. It's going to be similar to my previous surgery, with a few more orthopedic modifications to my spine to allow for the very advanced osteoarthritis and will include removing the facet joints that are growing spurs, and as much spine as can be removed to widen the spinal canal itself as it is closing itself up from bone overgrowth due to the arthritis.
-our air conditioner has gone tits up, shit the bed, etc. This happened while we were out playing Mutant: Year Zero (a table top RPG). We have a house warranty that covers the plumbing, foundation, water heater, water pump,the ac/furnace, and a couple of other things that I can't quite remember. Put the work order in Sunday about this time, and the service guy will be here tomorrow before noon. Meanwhile, it is hot as balls in this house that was never designed with the idea of not running the ac in temps above 70 degrees F.
-Carl was transferred from his cushy job of working in the store room, handing out tools and parts to working making paper on a paper machine. It's less pay, harder work, much worse working conditions, longer hours, and a rotating shift. The upside is there is So Much overtime available, unlike his former position.
-I almost forgot! I have been losing weight like someone sewed my lips shut. I am down to 214 pounds now. I had to buy a pair of shorts this evening. The first pair I tried were a 22. They fell right off. The 20s were too big, too. So, my husband brought me a size 18. They were roomy, but didn't immediately fall off.

Here's the thing: I'm not dieting. I am eating less, sure, but that's because The Pain has all but robbed me of my appetite. I have decided that once I get below 200, I will consider getting my knee replaced so that functions like I really want it to. Being lighter will definitely make the recovery easier, and the appliance last longer.
Mr. Pants Says

My Old Friend, Pain, And The Spoon Theory

I have been very lax about updating my journal. Duh. Facebook is easier, reaches more people, and this laptop is a piece of shit. (updating on my smart phone is a major pain in the ass, so there's that, too.)

Anyway, my back is playing up. I have had x-rays, an MRI, and seen my gp Doctor. Once again, I have herniated disks pressing on nerve roots, with the added bonus of severe osteoarthritis and spinal stenosis, with the accompanying bone spurs also compromising nerve roots. As I type this, I am in patient limbo acting like a football. My gp wants nothing to do with managing the pain, as my choices are narcotics or psuedonarcs that are all addictive. (I say I don't mind getting hooked again, I'll deal with the fallout once a real treatment plan is put into place).

Anyway, The Spoon Theory. Basically, it is a metaphor for how much energy a person with a chronic illness, or chronic pain, has in a day.

For me, the issue isn't about how much energy I have, but how much activity I have (and what types) before I trigger The Big Pain, for which at the moment, I have No Support. It also doesn't address the guilt that comes from relying on other people who have their own stuff to deal with for every day mundane tasks like driving a car, or shopping for groceries, or even something as simple as cleaning the house. Even preparing a meal for my family becomes a Sisyphean Task with the reward of hurting too much to even sit down and enjoy the meal I made. (Yes, folks! Chronic pain will destroy your appetite. Who knew?)

For me, my "condition" feels like I live in a crystal cage with no door. Those fragile crystal bars on my cage are very easy to break through, but they will cut me to ribbons if I do. Some days, the cage is nice and roomy, and I can fit quite a bit of my day-to-day inside those bars, with no fear of having to walk through those bars to get to the rest of my day. Then there are those days that the cage is only as big as my bed, and just to get out of that cage to so much as participate in my day, I'll need to bust through those crystal bars.

Not only are those bars fragile crystal that will cut me to ribbons, but they are coated in Guilt and Self Pity. Guilt and Self Pity will convince me to run face first through those bars and grin through the gouts of blood (pain, actually) and do stuff even if it means by 8 o'clock I'm so crippled I need help to get into bed.

To add to the whole thing, Guilt isn't just made up of not being able to do stuff and needing to rely on other people. The guilt is made up of medical professionals initially blaming my poor choices and lifestyle of being a fat, middle aged woman on why all of my joints are eat up with osteoarthritis (Yes, even the OA in my hands and neck are because I am a great big fat ass according to some people).

I did this to myself, and thusly am slightly less deserving of compassion as someone with RA, whose immune system decided to go gnaw on their connective tissues. (I don't believe for one fraction of a second that I am to blame for the OA. Even skinny fit not-old people get it, but they "earned" it through sports or some other Noble Reason.)

I have treatment goals, and life changing goals from all of this.

Treatment goals this time are radical spinal surgery to remove the arthritic facet joints, remove my spinal disks that are ruptured, and fully fuse my lumbar spine with screws, bone grafts, and rods so that the nerve impingement doesn't get any worse than it already is.

Anyway, this is what is going on right now.
Mr. Pants Says

I know you missed my whining

So, I am completely healed from my surgery to remove my gallbladder. Yay! I also finally have my hive under control, so long as I keep taking the various anti-histamines prescribed for me.

In other, sadder health news, my back is out. It's sciatica. We don't know for sure what is causing it yet. Right now, the doctor is assuming it's a muscle spasm and treating for that and inflammation. I have been "down" with this for almost a month. I have been treating it since last Thursday with no improvement, and some set backs.

This past Thursday, I awoke with a pain level of 0, and more energy and a feeling of being well rested that I haven't had in years. Carl is on vacation, so he had been getting Jessica out to school. I was feeling so good, I let him sleep.

As I was driving her to school, not even half a mile from the house, my back started it's bullshit. I ignored it, because she needed to get to school on time, and I had some scrapple to buy for breakfast. (been craving scrapple like nobody's business)

By the time I got home, I was in tears from the pain.

I haven't had a decent night's sleep since. I am up and down like a yo-yo. The only semblance of relief I can get is to stand up, or pace my driveway. Sitting is pure murder for longer than five minutes or so, and laying down is only good for just shy of an hour.

I need better drugs than tramadol, that's for sure.
Mr. Pants Says

Day Two.

As expected, today was much more painful than yesterday. All of the residual anesthesia had worn off by the time I woke up and I had slept through my 4am dose of pain medication.

I have gotten caught up with the Pain Train where it's just twinges and a background stinging at the incision cites. My bowels have still not properly awakened, but I am not uncomfortable since I have really restricted myself to clear liquids and super soft foods in small quantities.

Carl remarked that my complexion isn't as ruddy as it usually is, and my eyes are starkly clearer than they have been in years.

It's funny how when a disease slooooooowly creeps up, you either get used to the symptoms, or don't notice them at all. The only way I can measure from my perspective how sick I was is by noticing how much less sick I am now. I haven't really done anything to improve my hydration, but my urine is so light yellow compared to the dark orange that it was.

The best feature of all of this is that when I go to sleep, I don't immediately awaken mid barf. I also don't waken from choking, and gagging, and retching, or feeling like my throat is going to close up on itself.

And to think, just going on the blood tests and the sonogram, there was no reason to believe that I was actually sick and not just fat and middle aged.
Mr. Pants Says

Amazement

I can hardly believe how much better I feel, other than recovering from having had surgery.

I have had a little too much energy, causing me to over do some stuff. I still feel great other than wishing my guts would wake up so I could enjoy this feast I am preparing. I will nibble carefully and relish the left overs once my guts decide I am allowed solid food again.
Mr. Pants Says

End of the Year Surprise

I received a call on Dec 30 about scheduling my gallbladder surgery. Initially, it was to be scheduled on Jan 7, which would have cost me a ton of money. I told the lady scheduling the surgery that I might not be able to meet the out-of-pocket costs since my deductible would be $2500 plus co-pays. I told her to go ahead and schedule me since I might be able to pull a rabbit out of my butt and have the money before the surgery.

And then, a miracle happened. Someone cancelled for the 31rst. The last possible day for me to avoid a huge bill. The time of day was less than ideal for having diabetes (1 pm check in) but I was elated! I called all of the people that needed to know about such things and had them arrange to be my support team.

As I expected, I got a call in the morning from the surgeon himself asking me to get down to the hospital post haste. Carl rose to the occasion and helped me do the pre-op scrub down, and then we were off.

I had my gallbladder taken out, it didn't cost me anything out of pocket, and I should start feeling better in a couple of days.

There was a couple of surprise findings, though. For one, my liver is much much bigger than the surgeon expected based on blood tests, images, and other factors. And secondly, those same tests all said I didn't have gallstones, but apparently I had the kind that don't show up on sonograms. My poor gallbladder and common bile duct were just eaten up with these clear, stones. I have been ill for a while, and any time I complained of the symptoms I was having, I was brushed off.

And now, I am just waiting for my guts to wake up from the anesthesia so the fluids I've been sipping to alleviate the dehydration will leave my sore stomach and actually rehydrate me.
Mr. Pants Says

So That Was Christmas

Yesterday was really nice. I got spoiled by my family and had a nice relaxing dinner with Dad and his new wife, Kay. She is really bringing out the best in my Dad. I am glad they are happy.

Tomorrow is International Ella Maria Young Day. Celebrate it by worshipping images of me, sending me tribute in the form of cash, or at the very least by raising a glass in my honor and some hell along with it.
Mr. Pants Says

I have missed our little talks.

So, since my last entry, there has been stuff.

My knee has gone back to worse than it was before the surgery, which was an inappropriate surgery given the level of damage that I had done. Oh, well. It works for the most part. I'll go in for the replacement surgery when I can no longer walk at all.

Carl got laid off back in October, which lasted 10 days. We were OK since he was still owed a week's vacation, so he only lost 2 days pay. Immediately after he was called back, the mill went into maintenance shut down. That meant 12 hour days with no days off for about 20 days.

While all of that was going on, I was continuing my quest for improved health. See, I have been having a lot of weird symptoms of gastric reflux like choking, retching, and pain in my stomach, but very rarely any heart burn. This has been going on for a while so I just assumed it was all related to smoker's cough.

So I saw a gastroenterologist for the digestive issues. His first and best guess is that I have a bad gallbladder and GERD. I had an upper GI scope, which proved the GERD, but no reason for it. Then I had an abdominal ultrasound scan to see what state my liver, gallbladder, and pancreas are in. That showed that I have an enlarged liver, and possible sludge with no stones in my gallbladder. Then came a battery of blood tests that tested me for just about everything short of my IQ.

That's where it got terrifying. All of the liver function tests were dead normal. I tested negative for ANY auto-immune disorders. I was also negative for Hepatitis A, and Hepatitis B antibodies.

I am positive for Hepatitis C antibodies.

Holy shit.

I was straight up terrified. I scoured my past for ANYTHING (and ANYONE) that could have put me at risk. I was terrified that I had given the love of my life HepC (it is rarely sexually transmitted, but it happens).

So, I had to take another test that measured the amount of virus in my blood. Waiting for the answer was brutally agonizing.

There was ZERO (not just trace, or too low to count) virus in my blood. The doc figures (who called me personally on his own time to give me the results) that I had the virus a long time ago, then my immune system kicked all of its ass, and kept its mug shot on file should it ever make the mistake of ever trying that shit on me again.

Unfortunately, it means that I am excluded as an organ and tissue donor on the very off chance there could be a rogue microphage just hanging out. It also means that extra precautions above universal precautions have to be done for surgeries.

While all of that was going on, another test for my poor, battered gallbladder was ordered called a scintograph. It's where you get injected with a slightly radioactive dye that is processed by the liver and passed into the gallbladder. They time how long it takes to leave the liver and fill up the gallbladder, then you are injected with a hormone that makes the gallbladder empty itself. Then it is timed on how long it takes to empty and how much it empties, etc.

My liver took longer than average to empty into the gallbladder and the gallbladder didn't even try to empty in the hour it was given to try to. The wonderful gastroenterologist recommended that I have my gallbladder removed and referred me to a surgeon.

In the consult, he agreed that my gallbladder needs to GTFO. He doesn't think that it will solve all of my issues and wants me to consider a gastric bypass, since I have too much belly fat for the fundus fold to be effective (it would very likely undo itself from the pressure of the belly fat).

I do not want a gastric bypass. I know more people who have died or experienced negative life changes than have had success from that surgery. I am not a good candidate for that drastic surgery. My relationship with food is decent enough. I have been counting my calories for the last couple of weeks, and it is a rare day if I eat (and drink) more than 1500 calories/day.

Now I am just waiting for the surgery to be scheduled hopefully before January 1, since I have reached the maximum out of pocket for this year.
Mr. Pants Says

Setbacks are all a part of it, right?

I have had a really good day, for the most part. Great mobility, almost no pain, and I was able to forgo the Norco pills. I even managed to drive Jessica to school this morning with only mild discomfort, but not really pain. Like I was having to get used to how my knee is arranged now as far as its position in space, and how it extends itself to push the clutch in. I can say this: getting in and out of the car is SO much easier than it was before the surgery. I no longer have to boost myself up and lean all over the passenger side to put my left leg out now. I think I actually got a little dewy cheeked over that.

And then, I tripped over my own feet on the way to the bathroom and though I didn't fall, I managed to "plant" my left leg and twist my knee in a way it isn't supposed to twist. I didn't just cry because it hurt so bad, which it did, but because I was mad at myself for thinking I was in the clear for walking aids.

I now know that until I get to the occupational part of the physical therapy where I relearn how to walk without a limp, I will need the walker to keep a steady gait. It just seems so silly to use it since I don't need it for support. I am seriously just pushing it in front of me like a grocery cart. Sometimes, I don't even need to let it touch the ground. The simple act of carrying it in front of me keeps my gait steady. I don't understand how that works, and I guess I don't really need to understand it for it to work.

Meanwhile, I have taken a Norco, iced my leg, and sat the hell down again. I am going stir crazy being glued to this couch and not doing stuff.


addendum--

Carl just now helped me do my home exercises. The hardest ones require me to completely straighten my knee and try to press the back of my knee into the bed, and the worst one of all requires me to bend my knee as far as I can, then with a towel, bend it even further. I actually screamed like a little bitch while we did that one. It didn't hurt only when I bent my knee, but when I unbent it to bend it again. I could actually feel my knee cap grinding on my femur and shin bones, and sometimes getting stuck in the groove. I can tell you that I am convinced that there is absolutely no cartilage left behind my knee cap or where the knee is supposed to glide over the leg bones. It felt like sandpaper being ground into the tendon holding the knee cap in place and seriously, that exercise can straight up eat a bag of dicks (though I'll keep on doing it until I can bend that knee all the way again.)
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Mr. Pants Says

Peace

Today was my second physical therapy appointment. There was very much pain and whining on my part, but not once did I hold back. I completed every set of exercises I was set to, some more easily than others.

It would seem that I have been avoiding bending my left knee for so long, I have managed to shrink the tendons holding my knee cap in place. Now that there is nothing impinging on the joint itself and, theoretically, it should freely bend as well as the right knee. In practice, though, not so much. I have improved since Monday, but demonstrating that improvement is literally excruciating. I'm talking involuntarily screaming in pain excruciating. I need to get the soft tissues that remain in that knee limbered up and prepared for a partial replacement. I will work as hard as necessary to make that happen. I want to be a model patient, displaying my strength and willingness to get better.

My physical therapist is a sweetheart, and as well as being a great cheerleader and emotional support when my instincts tell me to "DON'T DO THAT, IT'LL BREAK!" she is also good at giving reality checks, like reminding me that I had almost all of the cartilage removed from my knee as well as quite a bit of bone remodeling not even an entire week ago, so It's Going To Hurt. She comforted my ego by telling me that I am recovering a lot quicker than most of the patients she sees that undergo similar procedures.

Again, I am determined to make the most of the opportunity to be well that I was given. Carl has gone to a lot of trouble to take care of me, and try to fill my shoes while I recover. He has done an outstanding job of it, to the point that I sometimes feel like I am malingering and should be back at it already.

He bought me a neat thing that I wish I had had last Thursday, and that is a huge cold pad. Like, it covers my entire leg and feels like heaven when I've pushed the PT homework too hard. It is so much better than the sad little ice bag I was sent home with, that's for sure. Now to figure out how to get the insurance to pay for a TENS machine to use at home... and also be sure not to "experiment" with it.

My dog Trouble has been acting odd concerning my leg. Like, he is constantly sniffing at it, and will sometimes chew at it like animals do for fleas. He hasn't pawed at it, much. Mostly because I stop him immediately when he tries to scratch at it, since he likes to pick on the sorest part.

The last time he acted like this, Dad had cellulitis in his leg that he didn't know about until the skin became discolored. The physical therapist checked my leg for infection and said it looked good, so maybe he's still able to smell the betadine they soaked my leg in pre-op.

Anyway, my leg is getting stronger every day, I fall in love with Carl more and more every day, and if I compared this journal's entries Before Carl and After Carl, I would be able to believe that it had been written by two different people.