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Tuesday, 24 September 2013

Time Wounds All Heels

I've said it before and I'll say it again - time is life. Every second that ticks by is a piece of life. "I'll do it tomorrow," can become a mantra that causes your life to drip slowly away. Now stop for just a few seconds of that life and let that thought sink in. It's water down the drain. Water that never comes back to you. We all take our lives for granted, probably far more often than not. Then there are the other excuses we give to ourselves. We'll say it's not the right time, but we rarely define what the right time is going to be. When we do actually define it, we push it back with another excuse. Obviously it's not something we want to do if we keep finding excuses to get out of doing it.

Quite often there are legitimate obstacles to the things we want. We can respond to those in a few ways. First, we can throw up our hands in defeat. Second, we can flounder and whimper about how we don't know what to do to fix things. Third, we can put off dealing with the obstacle even if we know what to do to get rid of it because we view the task on a level akin to swallowing live bait. Fourth, we can clamp down on our rampant idiocy in the face of resistance and actually do what needs to be done.

I've been meandering back and forth between all of those things in the last few days. Now that I'm finally feeling well enough to write and get some other work done, I've got a lot to catch up on and a life I'd like to get back to. It's not that I'm not getting anything done, but there are some onerous tasks ahead of me that have me cringing like I'm getting feedback at 5,000 dB.

First, I have to clean my apartment, top to bottom. For a non-domestic type like me, that's definitely cringe-worthy. Like many people I like my place to be clean, despite not actually wanting to do any of the cleaning, but my medicated state has induced a distinct lack of repulsion to any messes. Pet food scattered all over the floor because my ferret likes to dig in the food dishes? Check. Dust and hair on the bathroom sink? Check. Cat yak that has dried on the floor? Check. Then I look at the mess and want to cry, or sleep or something 'cuz I don't usually cry over spilled, well, anything.

If it were just those three things it wouldn't be a big deal, but I have boxes I never unpacked from moving in here a year ago. Books that have never been put on shelves, paperwork that was never filed, burned discs that need sorting, dishes to be washed, laundry to do...ah, hell. I'm getting tired just making a damn list. I don't get a lift out of cleaning, unless I'm feeling really hyper from way too much caffeine and mp3s blasting in my ears. It's hard to find the balance with caffeine, though, because just the smallest amount too much and I'm nauseated from it. Back to looking at the mess and wanting to sleep. Instead I turn right back to my computer.

I can think of a million reasons not to clean without even trying. I'll even try to blame it on my ferret who likes to get in the way. He takes serious issue with me removing his dirty potty pads, for one thing. I get the, "I worked on that all week," look. It never fails that he wakes up the instant I start cleaning, too, and suddenly it's the perfect time to play and jump on whatever I'm doing. He's almost a legitimate excuse, really. However, my apartment does actually have doors, and I can either shut him up in my bedroom where he's usually sleeping anyway, or I can shut him out of the bedroom if I happen to be cleaning that. It's more an emotional thing, I think. I hate being separated from him, especially when he starts pawing at the door to get to me and my heart breaks.

Considering my million arguments against cleaning, I'm sure it's easy to consider the possibility that I might not have quite so many reasons to clean. Sure, I need to organize my paperwork so I can do my back taxes, but that's yet another cringe-worthy task I'm not looking forward to, so it's not the greatest impetus in the world. There is a very good reason to get through those levels of resistance, of course. Revenue Canada owes me a whole lot of money. I just have to file the paperwork to get it. It might sound easy, but if you've never done business or corporate taxes you can keep your opinion to yourself. It's not just my income taxes either. I have GST returns to do. Considering we no longer even have GST (Goods and Services Tax), I should probably get those done. Not that the government was actually kind enough to get rid of the tax completely. Instead they mashed it with the provincial tax. It's no lower than it was - it just has a different name. Over the years they did reduce it from 7% to 5%, so it's better than nothing, but then it wasn't that long ago that they introduced the GST in the first place, and it was only supposed to be temporary. Now that our prime minister, Harper, has sunk the country into debt again (and this happened before the global economy tanked), I don't see them getting rid of it any time soon.

Cleaning my apartment and getting organized is going to take a few days, and of course I always push it off until the next day. I'm not being lazy. It's annoyance avoidance. I just don't do the things I hate doing. I do a lot in a day. When I feel like crap because I'm in too much pain or whatever, I'll play computer games or read a lot. When I feel like a normal human being I work almost all the time. Writing, producing, website work, business development tasks and conversations. They're all things that need to be done, but they're not as urgently necessary as the other things.

You see, I could really use the money I've got sitting in government coffers. It's mine, and I want it. I need a new car and a new computer with a really good webcam, along with a passport, and I need traveling funds. Come hell or high water, I'm going on a road trip. I haven't been on vacation in about 6 years, I think. that was my honeymoon with my ex, and it was four days. Before that I hadn't gone on vacation in about ten years. Sixteen years with a 4-day vacation. The computer has become a vital necessity. This 5-year-old laptop has been to hell and back. It's eaten many of the meals I have, as I can often be a bit careless that way. I wouldn't be like that with someone else's stuff, but when it comes to my own things I'm not too worried. They are just things, after all. It's got a lemon for a video processor, though, and I can't do any decent recording with it - something I have to be able to do in order to move ahead on a show project I'm working on for myself. Editing is the extent of its abilities right now.

I tell myself these things, and then that little voice creeps in to say, "One more day won't make a difference." I'm so full of crap when I talk to myself sometimes. Today is another day that I've made no dent in anything around the house, unless of course I did so by running into a wall and didn't notice the damage. Making dents in my computer is not optional. Well, it's been a productive few days, cleaning and taxes notwithstanding. So I'm not going to flagellate myself for one more day. In fact, I actually started a new blog about my experiences with disability, and how I've had to deal with family doctors and specialist. Not to mention all the weird tests I've been subjected to.

Then there are the drugs. I know a lot about pharmaceuticals, and actually have a copy of the Physician's Desk Reference for both drugs and symptoms of conditions. My new blog is called Rain on Pain - I thought it was rather fitting. Don't forget to bookmark it or subscribe to it if you're experiencing any kind of long-term medical condition. This blog you're reading now is as the name suggests - a torrential rain of my thoughts and whatever is going through that pretty little head of mine. Rain on Pain is focused entirely on coping with physical limitations, and helping people to get past them.

Speaking of physical limitations, however - I've reached the end of my tether and need to be dragged off into the arms  of Morpheus. A nice guy to snuggle with, I suppose. After said snuggling is over, I will return once again to the schedule I keep switching on my BlackBerry's calendar.

Friday, 20 September 2013

Oh Healthy Day! Crap, No More Excuses!!

Doing great people, doing great! I am now back to working it with the best of them. Well, okay, I'm not exactly perfect, but so darn close I'm doing a happy-dance (mentally so far, but give me another hour or two). No, I'm not as manic as I might sound, just so very happy to feel like I'm alive again. I have so many reasons to feel good right now. No narcotics, no anti-nauseants, very limited pain, no more acetaminophen impairing my liver function (which in turn was lowering my blood sugar to dangerous levels - I actually considered going to the hospital one day). My brain works for the first time in a while, and I'm no longer stuck in a bed because it hurt too much to sit up in a chair. I have a bunch of reasons to be happy, actually, some of which I can't really talk about right now - some business, some personal.

What caused this fabulous change in my life? Well, I'm on the proper medication for pain. Gabapentin, the neuropathic pain reliever. Originally developed for epilepsy, but for some people it really does the trick for pain, and I happen to be one of them. The doctor tripled my dose the other day, and it's still a bit too low, but I can live with it for the time being. They also use is to reduce the need for post-operative narcotics, and in my case the elimination of them. I do not want to be on codeine and oxycodone. I don't actually get addicted to anything, so I'm not worried about that, but there is still a physical withdrawal period I can do without, on top of the fact that I'm sensitive to them and they make me throw up far too often.

Here's the thing about pain. Most people have no idea what it's like to live in constant agony. The fact that I maintained hope and the tiniest sense of humour is rather a miracle. I know people who will run off to bed with a little headache pain. Living 24/7 with pain beyond that which I dealt with during childbirth, is an entirely different story - and I gave birth without pain killers of any kind. It's not easy to smile and be happy. It's not easy to crawl out of bed and face the world. There's no question that it causes severe situational depression in most people.

The fact is, I'm a damn tough woman. I know that about myself. I've got a very high pain tolerance, and I've lived with pain for most of my life. Generally I shrug it off, but this was different. Nobody can understand what it's like to have this kind of pain, and then suddenly have it mostly lifted, unless they've lived it. It's beyond exhilarating. A good friend of mine keeps wondering why it's taken so long to deal with these issues, and though I've answered him rather obliquely, I haven't given him the full story. I've got nothing to hide - it's just a pretty long and detailed voyage I've been on. My medical file is gigantic. I lost track of the number of tests I had while they were trying to diagnose me. I've been to three orthopedic surgeons, and two or three other specialists that I can't remember what their specialty was. I've had too many x-rays to count.

I had an EMG (electromyography) where they literally jab a bunch of needles into you in various locations, and then proceed to electrocute you - that was fun - it's like having muscle spasms and then you have to actually push and flex against the spasm making it even worse. One friend of mine told me it was the worst thing she had ever felt in her life, and she's had a kid, too. The test determines nerve damage, and it's how I found out I had L5 nerve damage that had nothing to do with what was happening with my hip joints. They were also checking me for sciatica, which I knew it wasn't. I get the occasional pinch of my sciatic nerve, and I know exactly what it feels like.

EMG Needle Electrode - Inserted in each nerve and muscle area of the leg, and then you get electrocuted with it. FUN!

Then I had some weird joint mobility test where the specialist basically took my legs and/or feet and twisted my legs all over the place. I just had to lie there, looking like a spasmodic frog, and it was no more painful than usual, but I'd never even heard of a test like that before. Very strange, but it became very obvious that my leg wasn't rotating the way it was supposed to. It kept locking up like it hit a barricade or something. That was the doctor that actually pointed me in the right direction for researching what was wrong with me, telling me I needed an MRI and what the issue could potentially be. It was around that time I saw my second orthopedic surgeon who started talking about tendon issues in the front of my hip joint, but I hadn't had any MRIs on my hip joints yet, so there was little he could tell me. He was pretty sure it was my tendons, however, and discussed physiotherapy with me. I told him it was painful to walk, and here's where I discovered I was supposed to minimize walking around. I couldn't stop walking completely, but every joint movement was only going to make things worse. Apparently the physiotherapy for that tendon problem involves something that doesn't move the hip joint. However, I had my MRI after that and there was no longer anyone suggesting a problem with my tendons.

Making all of this a hell of a lot more difficult to diagnose was the fact that I had two issues going on. I had something called a dynamic coccyx (tailbone), so I could literally tell everyone I had a dynamic ass. Nobody said it had to look dynamic! With all of my pain and difficulties being located in the same general area of my body (my pelvis), it wasn't being treated as two separate issues at first. They thought everything was caused by the same thing. I knew it wasn't. I could feel the difference. Doctors will be doctors, though, and they tend to ignore everything a patient is telling them, thinking they can't possibly know their own bodies or what they're talking about. I soon had to get really firm with every one of my doctors. They needed to know I was intelligent enough, and aware of my body enough, that I could tell them a thing or two about what was going on. Maybe a lot of people don't bother to learn anything about their own anatomy, or pay attention to the signals their bodies give them, but it's disastrous to think that way.

If I hadn't been proactive in my own care, my doctors might still be trying to figure out what was going on with my injuries. It pisses me off, quite frankly, that I understood it better than they did, but that's becoming the case more and more often these days. The ability to do research is vital for anyone who has a medical issue. Doctors are so bogged down with bullshit paperwork and insurance issues that they no longer have time for professional development. They know very little about the drugs they're prescribing, they're not keeping up with the latest surgical techniques or treatments, and they know next to nothing about newly discovered illnesses or conditions. For example, my old family doctor had never heard of a dynamic or unstable coccyx. It's real, but has to be dealt with by a specialist. Still, you'd think a severe curvature of the tailbone and extraneous movement causing pain, would be something a doctor would consider as a possibility if he or she bothered to spend two minutes considering the problem. If a tailbone hurts, there are very few issues that can cause that pain. Probably only two, actually. The other being a broken tailbone.

Stand-to-sit Coccyx Positioning

Dynamic Coccyx - See the difference?

So, once my coccyx was culled from the problem, accomplished through surgical removal, we were able to concentrate on what was going on with my hip joints. Once we finally ended up ordering the MRI for my hip, this was basically the result:

And I enjoy this condition in both hip joints! W00t! (Don't make me hold up the sarcasm sign.)
As I said, it was a very long road of confusion, and it would have been even longer had I not decided to take control and do my own research. I found the site coccyx.org, and learned all about tailbone pain. I took my laptop in to my doctor to show him a bunch of the pages. He told me himself that he'd never heard of a dynamic coccyx. To his credit he sat down and looked at the whole thing. He listened to me when I told him what specialist I needed to see. The only delay there was when I discovered that the orthopedic surgeon he sent me to didn't do tailbone work. It's such a rare condition, and not very glamorous, so there are almost no orthopedic surgeons that perform the procedure I needed - a complete coccygectomy.

In an odd coincidence, the only doctor I'm aware of that performs the procedure in my province was actually in Burlington, Ontario, the city I happened to be living in at the time. He had patients from literally thousands of miles away (all the way from Alberta - Edmonton is about 3250 kilometers from Toronto - yes, Canada is a very large country), in no small part because he's a very gifted surgeon. He was up on all the latest techniques. He injected a pre-emptive, long-acting local anesthetic around the surgical site to prevent pain signals being initiated (once pain signals are received by the brain they're very hard to shut off). He also explained that he kept an extra length of bone membrane (a thin skin that covers our bones) and stitched it over the raw bone he sawed through (the raw bone being a part of my spine). It speeds healing of both the bone and membrane, because the membrane doesn't have to regrow and then heal - it's just the incision part that has to heal.

I was really impressed, because this surgeon had to be closing in on 90 years old. I'm not a great judge of age, but I kept wondering why the hell he hadn't retired 20 years ago to enjoy his remaining years. Instead of retiring or becoming a relic, though, he totally kept up with all the new information - things I had researched and planned to ask him about (like the local anesthetic that cut several days off my recovery time), he was well aware of and used the techniques with every one of his surgeries. The guy is an amazing doctor and surgeon. A little gruff in his bedside manner, but I didn't give a crap if he knew his stuff, and he really did. I found out on one of my visits to him that he hadn't retired because there was no one else doing that surgery. In other words, he was worried about his patients. Good man.

I only had to see him two or three times before my surgery. I can't really remember. He had to send me for a lumbar MRI, however, to be sure my pain wasn't coming from my back. Of course, it turned out that wasn't the cause at all, but I had disk scarring I was unaware of. Go figure. I mentioned the L5 nerve damage, and he said it was possible they were related because it was in the same general area. The funny thing is, he knew the second he looked at my x-ray that he was going to be removing my tailbone. My family doctor looked at it and saw nothing wrong. Generally they have to do a sitting/standing series to determine the severity of the curvature. In my case, lying on the x-rays table with no pressure on my tailbone, the curvature was already huge. When I looked at the x-rays on my laptop, even I could see there was something seriously wrong there. I began to wonder about my family doctor's eyesight.

After my surgery I had to recover. I couldn't really walk around too much, and wasn't allowed to sit for a month. Full recovery took about 6 months, I think, but I could be remembering that wrong. One of my friends asked me what I sit on if I don't have a tailbone, and the truth is I sit on the base of my spine. My position doesn't look any different, but if I put my hand over it, it feels really strange - there's no gradual tapering to the bone there anymore. ("Did she just grab her ass?" Why yes, I just might have.)

So, that was a huge delay to dealing with my hip joint issues, to say the least. I finally had MRI confirmation just over a year ago regarding the tearing. I was booked to see the orthopedic surgeon who did my tailbone, but had to cancel because I moved to a new city. I couldn't continue the process with him, which was more than a little frustrating. Especially since it meant I was looking for a new family doctor, and they're in rather short supply up here. There were only 5 of them accepting new patients in Hamilton (a city with about half a million people). I couldn't afford to travel back and forth to Burlington on the bus, and certainly not in a cab, and I no longer have a car. I had no choice but to change doctors. There's a ridiculous application process for a lot of family doctors here, too. One more obstacle for people who have a hard time getting to a doctor's office in the first place.

Now, of course, I can't even take the bus to my family doctor. The routes are funky, and I have to take two separate buses for a relatively short trip. Thus making me feel like a lazy idiot for getting on just to go a few stops - twice. Instead I walk, something that causes me further damage every time. Not to mention a lot of pain. So, with every visit to my doctor being more than a little inconvenient, I will often put off going for a week or two. I know it delays the day I'll have my next surgery, but there's a limit to my endurance and pain tolerance. I can only move as fast as I'm going, basically. Being temporarily hindered means it takes longer to become unhindered. Just one of those painful lessons we learn in life. I think I moved three times, too, so that certainly caused some delays.However, just being able to live a semi-normal life definitely has its benefits.

Well, I've managed to gradate to doing a happy-dance in my chair this morning, so I think I'll commence my own intimate little party. As one of my friends says when she's happy, "Squeeeeeeeee!!"

Sunday, 15 September 2013

Hypoglycemia and Hepatotoxicity, or Excuses Excuses

I'm afraid that, despite how long it's been since my last post, this will probably be a short one. I've been going through some health issues that have prevented me from writing. To start I have been in a lot of pain, so I've been spending a lot of time lying down which is much less painful on my hip joints than sitting up. Anyone who has been following my blog knows that I am awaiting surgery for labral hip tear injuries, as well as joints that have become misshapen and need to be re-shaped surgically.

In addition to this I started experiencing near-constant low blood sugar issues, which can be very debilitating. Now, for those who don't know, hypoglycemia (literally translated as low blood sugar) is not a disease in and of itself. It's always caused by something, and there are numerous things that can cause it. Many diabetics experience it because insulin levels are very difficult to control, and too much insulin causes low blood sugar. I'm not diabetic, however, so the reasons I'm experiencing low blood sugar have been unknown. Through my own research, and after discussing it with a nurse at my doctor's office, the current determination is that my liver function is impaired because I'm ingesting too much Tylenol (acetaminophen). The dosage of gabapentin (a neuropathic pain reliever, rather than a narcotic) prescribed by my doctor at my last visit was too low, so I had to continue with my Tylenol Ones.

I have not been experiencing symptoms of hepatotoxicity per se, but generally a fair bit of damage is done before the symptoms become clear. Generally the liver swells up and there will be tenderness to the touch that can be completely missed. I know because I've been through it before. I was sent to the hospital a few years ago, very suddenly I might add, having had no symptoms of liver impairment. My family doctor discovered the swelling of my liver upon examination when we discussed my Tylenol intake. Of course, considering my general level of pain even on a good day, I'd never notice a tender liver even if I got slapped in the face with it. Thankfully no one chose my liver to do that with, however. A couple of pokes from my doctor was enough to tell me there was an issue.

The joyful note to this is that the liver is the one organ that can regenerate itself quite nicely. Once you've stopped poisoning it, it's content to get on with rebuilding itself. In fact, partial liver transplants have become the thing nowadays. They can put a piece of a liver into someone and it will grow into a full liver. The donor who loses a piece of theirs, will actually grow it back. Wonderful organ. It has to do with stem cells, and the identical mechanism that is used by salamanders when they grow back a tail or limb. Science is currently looking into ways for us to regenerate our other organs, which will be a step in the right direction rather than having to do transplants. Unless you have a faulty liver to begin with, there's quite a bit of damage you can do to your own before you hit a point of no return. Since no one has any idea where that point is, however, it's not advisable to push it. Believe me, the feelings of having your liver not working properly, and the symptoms of low blood sugar, are nothing that anyone wants to experience on a daily basis.

So, what are those feelings and symptoms? Well, with low blood sugar there's blurred vision, full-body tremors, sweating, headaches, etc. Those are the mild and moderate symptoms. Severe ones include seizures, coma and death. Not a state I recommend to anyone. Impaired liver function, before you get to the jaundice and swelling and bloated abdomen, are things like nausea and exhaustion. You can imagine that I don't spend my days in a state of comfort right now.

All's well that ends well, however, as I've got my follow-up appointment on Tuesday at 10 AM. I'll get the increased dose of gabapentin and have acetaminophen out of my life for good. I still have to take some of it until then, but I've cut it back drastically. Taking it makes me feel pretty sick now, so it's a toss-up with juggling the pain issues. I can't take NSAIDs at all, so aspirin and its ilk are out of the question for me. The even better news is that I will likely have my first surgery scheduled pretty soon, and that means I'm on the road to no longer needing pain relief at all, which is exactly where I dream of being. My life awaits!!