I had a visit with my liver specialist yesterday. All is good on the AIH front. My LFT (liver function tests) are still excellent, very low and normal, and unchanged from 2 months ago. And over that time period I’ve come off the evil steroids completely and am currently celebrating my first week without them since March. 4 months to regulate the inflammation caused by that stupid biopsy. The pain from the fistula and repair is still there. Feel it after being upright or standing/walking for an hour or so. Last week I had a bad pain episode after my blood draw and doing a few small errands. Pain was right there for a solid day, with sporadic pain all the way down the to groin area (via the hepatic artery that was messed with in the repair). Scary. Doc says can’t do anything about it except pain pills and to not push much.

Weight is holding steady, but still way too high. My back just can’t take the strain and my liver either I guess. Losing weight at home with extreme boredom, others around eating ‘normal’, and inactivity is nearly impossible. I have been pondering, researching, and stressing over the idea of getting some kind of weight loss surgery (WLS) to get things moving in the right direction. I’ll write more about that in another post I guess. But I spoke with my doc about it (he’s mentioned it a couple times). He says that the current waiting list is about 5 YEARS long. Very discouraging! I had thought and read that 1 to 1.5 years is what to expect, going through all the counselling, nutrition courses, and pre-surgery diet/weight-loss. Guess that is what they aim for, but the canadian system is backlogged. Put the request in anyway to get in line. Doc said that I could possibly resubmit a more ‘rush’ request if the wait is that long for me. In that I’d have to stipulate all the problems I have with gallstones (I don’t have any ATM because I don’t eat fat) and mention my liver condition and back condition (not sure I’ll live 5 years without some major weight loss!)

So I guess I can stop stressing about the WLS and how difficult and possibly miserable it would be to live with that constant restriction. I’m glad the liver is doing better, guess I should jsut focus on that. Would be easier IF I HAD SOMETHING USEFUL and INTERACTIVE TO DO WITH MY TIME!!! I’m completely out of ‘idle’ stuff to do. Watched every TV series that I’ve ever liked and over 700 movies in the past 3 years … on top of normal TV. Sick of it. Internet is equally boring after about 1 hour a day. arrrrrrrrgh! anyway, bed time.

I don’t like to complain (despite doing it a lot!), but this really interferes with my daily activities. And they are already far too few. Haven’t been for a walk for a week. Went to the post on the weekend, but back was hurting pretty bad just with that. Pain pills seem to do nothing. Guess I’ll have to up the dose or something. Can’t afford to slip further from less activity. And I also need to stop bending over! I keep doing this and one time I just won’t be able to straighten up! But either I drop something on the floor or someone else does, and I just can’t leave it there. I was outside a few days ago picking up trash and pulling weeds along the house. So stupid, but can’t stand it! Drives me crazy once I notice it and then it has to be done.

I’m also pretty bored. No TV to watch anymore as all the shows worth watching are over. Nothing to do here BUT clean, so what choice do I have? So frustrating!

We lost power here in St-Jean yesterday. It was hot and there was a powerful storm that knocked down power lines, etc. I had the misfortune of actually being up and about when the power went off. Why? Well, let me tell you. Because I was up doing this or that, I was not in bed and I was not in my chair. So that means that BOTH power-adjustable devices were locked in their unusable positions. The bed being completely flat, and the lift chair being almost standing position. This leaves me with no comfortable place to sit. Everything else is had a back to it that it at 90 degrees, which I can only tolerate for 1 or 2 hours without the back pain starting. I found a little solace in the patio chair when it wasn’t raining, but even that didn’t help much.

So I was forced to delve into the pain pills once again and lather up with biofreeze every couple hours. That just barely took the edge off. By about 2:30 in the morning, after trying to sleep on my side or back for 3-4 hours, I was in tears with the pain. Was so uncomfortable that I couldn’t stay in a position for more than 30 mins, and then changing positions hurt like a SOB each time. Got up out of bed about 5 times during the night when I couldn’t take it anymore. Each time, was harder and harder. When it was time to actually get up, I could barely do it. Very discouraging.

So I only THINK I’m doing ok because of the sheltered life I live in my little house with all my handicap aids. If I can’t survive half a day here in my own home without them, how can I expect to travel or even work one full full day somewhere? Just deluding myself that I can do it without some sort of major accommodation. A portable ‘wedge’ to put under a mattress to lift up the head. An employer that allows a sleep break every 2 hours and willing to buy a proper chair. How the heck can you find any of that, especially looking on your own. The CLSC is useless here and it’s the only place I know to go. I’m grateful for what they’ve done, but they can’ provide or direct me to these things. No idea how other people with these challenges cope. They must have an inside line somewhere. Or a wealthy benefactor.

*sigh* Well the power is back on now (20 hrs later) and I’m in bed for the day. It’s going to take a lot of bed rest and staying still/put to get over this. hopefully no more power outages coming soon! Must remember to get more pain pills as well!

In other “best they’ve ever been news,” my sister’s husband has finally arrived from Morocco and seems to be fitting in quite well. She’s certainly a lot more happy and focused, which is a big relief. As always, some bumps along the way, getting used to living with each other again and with the kids (and me! lol). But they’ll find their way soon enough I hope. A few weeks of running around getting documentation (insurance, driver’s licence, etc) and he should be set for looking for a job and all that.

It’s been a rainy couple of weeks here, so hoping that will turn around soon and I can try to get out more. Not sure where to … but somewhere that’s not here would be great! lol. Had a passing thought of heading out east to visit my aunt (and godmother) … haven’t seen her in a long while. Some nice scenery would be cool too! I think I can handle the 15+ hour drive if everyone comes along and shares driving. A few pain pills for the back maybe. Though, with the price of gas now, may just be too far! it’s a ridiculous 1.45$ a litre here now! Makes even a trip to the store kinda expensive.

Maxi
SuperC
IGA Shop Online
Provigo
Loblaws
Mache Richelieu
Best Buy
Future Shop
Walmart
HBC/Zellers
Canadian Tire
Staples
The Source (by Circuit City)

Got more? Add them in the comments. Hopefully with the increase in the number of households with internet, and rise in environmental awareness, we can do away with the paper versions that clutter out mailboxes, recycle bins, and landfills.

Scientists (and writers) have long known about the therapeutic benefits of writing about personal experiences, thoughts and feelings. But besides serving as a stress-coping mechanism, expressive writing produces many physiological benefits. Research shows that it improves memory and sleep, boosts immune cell activity and reduces viral load in AIDS patients, and even speeds healing after surgery. A study in the February issue of the Oncologist reports that cancer patients who engaged in expressive writing just before treatment felt markedly better, mentally and physically, as compared with patients who did not.

Scientists now hope to explore the neurological underpinnings at play, especially considering the explosion of blogs. According to Alice Flaherty, a neuroscientist at Harvard University and Massachusetts General Hospital, the placebo theory of suffering is one window through which to view blogging. As social creatures, humans have a range of pain-related behaviors, such as complaining, which acts as a “placebo for getting satisfied,” Flaherty says. Blogging about stressful experiences might work similarly.

Source: Blogging:It’s good for you (Scientific American)

In my case, the bleed was somewhere between the transjugular vein where they went in (I think they call it a hepatic vein in the liver, with some special name) and the hepatic artery. In the diagram below, it’s shown more clearly. Keep in mind that this is a diagram! So it’s not as simple as it’s shown, the veins and arteries actually branch out in all directions making a connection easier and harder to avoid (I guess!).

Click here for original, expanded diagram.

So ya, ouch. But it was patched up by embolising part of the liver. Making a clot form in a branch of a branch off the hepatic artery. Feels weird having a junk of useless stuff in the liver, but at least not bleeding anymore. I had to do a lot of research and digging to understand just what happened, and then to find diagrams to show it. The liver is an incredibly complex organ! Even when you zoom in and look closer, the same structure exists but on a much finer scale. As shown here in a diagrammatic liver lobule and real image here.

My mom fell and fractured her upper arm/shoulder about 5 weeks ago … tripped on a stool trying to answer a phone call from me! So I’ve been thinking a lot about that - figured that was a fairly good sign that I was jinxed. Not by itself, but with all the rest of the unluckiness following me around! LoL. But I got over that. My Mom’s shoulder injury lead to blood tests while she was there and she’s been following up on what they found and looking after the shoulder. Good thing she went to the hospital though, they found a host of other things that need tending too - high blood pressure, diabetes, and some unknown thing that is causing elevated liver enzymes. So she’s a bit freaked out by all of that at once, but seems to be coping and making some changes to improve things. All good.

I’ve been travelling out to visit her a few times since then, and in so doing have passed through my hometown twice. This gave me the opportunity to stop by and visit my 95 year old Grandma. She’s doing well - body starting to fail her a bit (eyesight, hearing mostly) but her mind is still sharp! My tough independent Gram - that’s a good role model to have for sure.

I’m doing ok as well. It’s now been about 6 weeks since my liver operation. First week or two was really tough, felt so weak and pain in liver was pretty bad. Now, my energy and endurance is about back where it was before the operation which is good. I’ve been walking (almost) every day for the past 4+ weeks. Not far, just around the block or the big block if I’m feeling good. That’s about half an hour at a good pace. Back is really sore when I get back and liver pain increases as it goes along. But a shot of water, some fruit, and a couple hours rest and i’m ok. LOL. seems silly to recuperate for so long for so little, but what can you do? I think the liver pain is slowly going away, I don’t feel it as much after activity … but it’s always there. Discomfort, like I have a wooden branch in my liver … which, as my specialist says, it’s far from the truth! a bunch of clots plugging things up. A strange sensation for sure.

I’ve been trying to get outside more too. Going to the waterfront or local parks when it’s nice out. Feels good to just go and sit, walk a little bit. For an hour or two. Starting to get a little boring since the places are so small, so I’m desperate to find something else. I finally took my bike to get repaired and I rode it around for the first time today. I think it’s been 3 years. Long time. I didn’t have much back pain while I was on it … hopefully that will be the case for longer rides (I only went around the block). It’s a bit hard to get on and off since I have to swing my leg up and over. Worse since I purchased the bike with a frame that is about 1-2 inches too large. Anyway, hopefully a week or two of small trips and it will be easier. I’d really like to make it down to the waterfront for a ride. We’ve got this great bike path that runs the length of the Chambly Locks here in Old St-Jean. Something to work toward. But I’m pretty terrified of falling off the bike. Not sure my back can take a fall like that … or even if I could get up after! Would be horrible if I have to call an ambulance out on the bike path, eh? I’m a bit wobbly on the corners, so I will have to take it pretty slow. Of course keeping my cell with me. Of course, with my luck, if I fall, I’ll fall ON the cell phone and smash it. LOL. Wouldn’t that be something!

In other news, my brother-in-law finally arrives (from Morroco) next week. So everyone is just abuzz about that. Looking forward to it, but it’s going to be an adjustment for sure!

When I returned to Canada, I was burnt out from research and in a depression of sorts. My intention was to take a few months off and just relax, something I never did between all my other major life changes (i.e. between my various degrees). At the same time, I figured that I would be able to stay with my sister for a short time, help out a little bit with her kids (who were still in after school daycare at the time!) … all this while myself getting settled back in Canada and start looking for a job.

Well it certainly didn’t turn out that way! The first few months were fine. Getting to know the kids as their unique personalities started to develop, spend some time with them, have fun. Made the decision to move in with my sister, finding a nice place to live closer to her work and where I could be around, but still independent. That didn’t last too long. I quickly became wrapped up in all the household disagreements and troubles … then I started to get sick.

Summer rolled around and I thought that I had developed diabetes. Delayed taking all the tests my doctor prescribed because I didn’t yet have my medicare card and I guess I didn’t think it was that serious or urgent. BIG MISTAKE! I think it was September when I started to turn yellow and feel sick. By late October I was in liver failure … still convinced that it was ‘just’ diabetes, and perhaps a gallstone blockage that was the cause of my problems. I monitored my blood sugar at home and took the necessary steps with my diet restrictions, but wasn’t enough.

That first ‘attack’ was scary. Little did I know that it was the first of many such emergencies, and that now, 2.5 years later, it would all be happening again. during that 2.5 years, I worked fairly hard to keep with my treatments. I was taking blood every month and visiting specialist every month or 2 for a checkup. It took almost a year before I started to see real progress. And then another year and another treatment plan before I was in a position where I thought I had my disease under control.

Sadly, during that time, I’ve pretty much lost all contact with friends and even the outside world. Now lead a very isolated life, even the online diversions and interaction I had before are now gone - as they no longer hold much interest to me. My back finally gave way to strain of my extra weight having been severely weakened by the medication I was taking. Now I have what is I guess a disability, though I still have a hard time thinking about it like that. Makes me angry when people think and talk about me as being ‘handicapped.’ I’m not really. Lots of people are a lot worse off than me, it’s kind of diminishing to their struggles to say I’m handicapped. I’m still able to get around on my own and take care of myself. I do have some serious limitations though and they interfere with my daily activities and severely limit my future possibilities. I guess that is the definition of handicapped, eh?

Hard to accept. Even harder to act on and resolve! I don’t have a clue what to do with myself day-to-day. And my future? It’s even more uncertain, I don’t even know how to get myself out there to test my limitations and endurance in the real world. All I can do here is hold my own and try to focus on keeping myself alive and not let myself fall further down that slippery slope and lose all my independence and mobility. It’s so hard though. Same thing day after day and day. Making little or no progress and can’t see hope for the future.

Yet I fight on as best I can. Sticking to my treatment and following my doctors wishes. I’ve been trying to get myself out walking every day for the past few weeks, sucessfully. It hurts a lot, both in my back and in my liver. but I seem to recover after a few hours rest and some nourishment. Right now, I’m trying to focus on getting off the prednisone steroid again. I literally hate myself and how I act on it. Moody and angry most of the time. Can’t sleep or dream normal. Food cravings and overeating a constant (i.e. every 30 minutes) struggle. Add to that all the internal and external physical problems it causes … it’s clear that is the first thing that has to go in order for me to progress.

I did it before. I was at normal liver function for 4+ months and off prednisone completely for 2 months. And just in that short time I started to feel more normal, more like my old self (just with all these new ‘handicaps’). It felt good. So I will be seeing my specialist in Montreal next week. Hopefully, the blood work will look better and we can start thinking about tapering off the prednisone again. Quickly this time! Last time was quick as well according to them. But it was 6 months or more. I can’t wait that long this time. Wasted too much time already and I can’t handle the withdrawals for that long. The joint pain is just too much on top of everything else. I guess it’s not a choice, not up to me to decide, whether I go off fast or slow. I’m at the mercy of my liver and my doctor. But what I will do is make the commitment to be absolutely vigilant about getting frequent blood tests to monitor everything. I didn’t take that serious enough during the last steroid reduction and I think I may have 1) suffered unnecessarily for extra months, and 2) was left with unanswered questions and extra uncertainty regarding the status of my liver leading up to my ill-fated biopsy in February. so lesson learnt I hope!