Back in hospital...

Hopefully just for the night, it's been a frickin long day.

Recovery has been painfully slow.  Considering the operation was a month ago I'm really not doing well.  This infection really threw a wrench into everything and has slowed down the entire process.  It's more so extreme discomfort than pain that is getting to me.  There's a difference, but its just as bad as pain.  I do still have extreme pain once or twice a day, but beyond that its just constant abdominal pressure.  It's pushing against my ribs, my back, my bladder, you name it.  It hurts to move or breath deeply or even sit up with a neutral spine.  It's also very uncomfortable having drain tubes stuck inside of me and bags hanging everywhere.  It's weird how I was actually doing better the day of the operation than I am now.  

Last Wednesday I came in for a CT scan, which showed that the abscess currently being drained had almost dissipated, but another large collection had formed, this time on my right side.  The good news; we finally know why I'm hurting so bad, the bad news; I've got another fucking abscess.  My family doctor called me the next day with the report.  There was the large abscess that needed to be drained, as well as multiple smaller ones that will have to dissipate on their own.  The scan also showed what looked like a clot in my femoral vein.  I was ordered blood thinners (more needles, yay) immediately and was told to wait to hear more about getting the abscess drained.  Of course being Easter weekend, I couldn't get in until today.  It was a tough weekend of just waiting in pain.

Lauren brought me in at 10am this morning, and once I saw the surgeon he said he would order the test to be done and get me a bed because I would likely be admitted.  I was expecting just a quick in and out, putting in the drain only takes a half hour or so, but I guess they want to keep me for observation.  I didn't take it well, I hate being in here so I was pretty grumpy all day.  We had to wait in a waiting room until around 4 and of course no food or water allowed until after the procedure.  As I type this it sounds petty to complain about, I've certainly endured worse, its just a straw that breaks the camel's back type of ordeal.  I almost snapped this morning.  More waiting, more needles, more poking and prodding, more stupid protocols......less freedom.  I was also frustrated that they knew about this abscess a week ago and gave me no information on what was to do down, they certainly didn't let me know I should expect to be admitted.  Nobody likes going to RUH for a simple follow up and being told you have to stay. 

Anyways they put in a 2nd tube, this one hurts a lot more.  As of right now I've got an ileostomy, a wide open surgical cut (under gauze, they had to take all the staples out when the abscess started leaking through), and a drainage line in either side of my abdomen.  So yeah, the old midsection isn't feeling so hot right now. 

That was a little ranty, but hey it's been a rough go and I figured it was a good time to update everyone.  Time for the positives:

-My family and friends are amazing.  Lauren has been nothing but supportive, and her resilience through all this has been inspiring. Everyone around me has gone above and beyond to do anything they can to make me comfortable, whether its running around the city to pick up random stuff for me, putting movies in the dvd player, or just giving me a back rub, everyone has been so good.  I truly am fortunate to have so much support, some people go through this stuff alone and I can't even imagine what hell that would be.

-Home care has been helpful without being annoying or intrusive.

-The surgical incision over my belly button is healing very well.

-As annoying as this drain tube is, at least its just an abscess rather than a kink, blockage, or perforation, etc that would necessitate more surgery.

-My stoma/ostomy is working great.

-No more catheter or staples.

- I can go for car rides, etc without being scared of having to go to the bathroom all the time!!!

-Again, I have such a huge base of support.  I don't feel like anything has been too big or too small to ask for.  One big highlight has been friends taking me out for walks, or in this case wheelchair rides :)

Tired of being tired

This low energy thing is getting old.  I'm always amazed at how dynamic this disease is, and how many factors there are.  One thing can be improving while another is getting worse.  I'm definitely better than I was a month ago, but I'm still very limited.  I spent most of my day yesterday grocery shopping.

I said "my" day rather than "the" day because they aren't the same thing.  "My day" is the select hours within the actual day that I feel strong enough to get off the couch.  I look fine, and my spirits seem to be up, but I'm still not able to do a whole lot.   I really need to pace my energy properly, and it's easier said than done.

So poor little Lane is tired because he went shopping....if you are rolling your eyes think again.

-Every single car ride to 8th street is risking the humiliation of pooping my pants or otherwise.
-A couple of weeks ago I threw up into an empty travel mug at a red light, then proceeded to my doctors appointment and carried on with my day.
-Having to "go" all the time causes so much stress and frustration.  I'm comfortable with my condition, but it fucking sucks when you leave your shopping cart to run across the store to the bathroom, just to come back (granted, 20 minutes later) and find the staff took it away.
-Or waiting in line for 10 minutes at the bank teller, making it aaaalmost to the front of the line, and then having to run away and find a washroom (they usually don't have public ones so I either have to seriously bolt, or embarrassingly beg and plead the staff to let me use theirs).  In situations like this by the time I'm out of the bathroom I'm exhausted, embarrassed, and sad so I usually just go home instead of getting back in line
 - Not to mention the stress of feeling I always need to justify my behavior!!!

Just stop for a second and try think of what kind of stress levels these situations can cause.  Now think of those acute jumps in stress happening multiple times per day and the compounding effect that it would have over a person for TWO YEARS!  At this point I'm chronically stressed, really on-edge all the time.  I have a seriously hard time calming down. 

So yeah, literally all I did yesterday was make a trip to the health food store, to the hospital for bloodwork, and then to superstore, but by the time I got home I was done.  Driving, crowds, lines, and not knowing where the nearest bathroom is all make me extremely anxious so it was a big day.  I work really hard to listen to my doctor for what foods to eat and carefully plan out meals, but $400 worth of groceries later all I wanted was a nap and someone to make me soup.  I didn't even have it in me to unload the dishwasher, let alone preparing anything.  I pride myself on eating nothing processed or read-made, but I always underestimate the labor involved in actually preparing healthy food.  It just left me feeling that I honestly would have been better off sleeping all day and eating "regular" food. 

What's better in the big picture? Being tired and strung out to the max with an empty belly and dirty house full of unprepared superfoods, OR, being calm and well rested with a belly full of cereal.  I just don't know anymore. 

On a more positive note I did get out this past weekend.  Lauren, Mark, and I went to Lauren's cabin at Candle lake.  We also camped a night at one my my favorites, Steepbank lake.  I am so thankful for my friends, without them I wouldn't be able to do these things that I love. They literally did all the work, packing and unloading, cutting the firewood, etc, and let me just lay around.  I felt so lucky!!

It was very peaceful up there.  People try to advise me against going out and living life because I am sick, but what do you think is a better situation for me, being sick as a dog at my own private campsite next to the water, or being sick as a dog in the environments I described to you a few paragraphs ago?