So, maybe I won't be failing history after all!

There is a lot going on in my life. I am still estranged from my husband. I have just taken over the apartment, and my mother is critically ill with cancer. If you have spent any time reading my blog, you know that it is usually at times like these that I get very quiet here. I'm kind of in that place now. So I'm posting about something almost meaningless compared to what is going on, but still important. The history test we had this morning.

The History of Western Civilization. Big stuff, lots of info, oodles of odd names like Octavius and Eurathothenes, and an abundance of people, places and things.

I have studied for this test. Seriously. Gone are the days when I, oblivious in my youth, waited until the last minute to study. 50 pages of notes over 4 lectures and 5 chapters of 2 books - procrastination was just not an option.

So much info, so little brain.

I just finished the dreaded test, and am happy to report that it wasn't nearly as difficult as I thought it was going to be. In fact, I am going to be daring here and predict that I might have done quite well on it.

I am relieved. Because when there are lots of big, hard things going on, it is really nice to have some of the small things work out.

Whew.

An IC Moment

Recently I had an experience that typically signified what it is like to be an IC patient in my world. In an effort to try to elimiate some of the pain associated with my IC, I had agreed to a series of treatments that involved instilling medication directly into my bladder. I wrote about it here and here.

After the second treatment, I developed a lot of pain, more than the usual amount associated with the instillation. It was brutal. I had constant burning, and was urinating every 20 minutes with no relief, and every hour at night. Life became a blur of pain, burning, meds and drinking copious amounts of water in an effort to sooth the fire.

I assumed that I was suffering a reaction to the treatment, but had a difficult time contacting my doctor. After two weeks of trying to cope with it, I finally went in to my local medical centre to see a resident. Knowing that I would most likely be required to produce a urine sample, I drank several glasses of water before I went in to the appointment.

Halfway through my appointment with the doctor, a lovely, compassionate young woman named Dr. Nikkel, I had to go to the bathroom. Badly. By the end of the appointment, I was desperate. Knowing that I needed to hold it in at least until I got to the lab to do the urine test, I still really badly wanted to throw the whole thing to the wind and hit the can on the way out of the medical centre. At this point I was no longer able to stand upright, because of the pain.

Leaving the medical centre with Grace, who had graciously agreed to come with me, I debated driving the short distance from the medical centre door to the front door of the hospital. Unfortunately, that would have involved sitting down in the car, which I knew I would not be able to do, so I walked. Actually, shuffled would be a better word. Bent over. Wincing.

Once we got inside, we went to the front desk where the receptionist was going over a stack of files with one of the lab technicians. I limped into her office, where she looked up at me doubled over her desk and told me to take a number. Sigh. There was one other person in the waiting room, an older man sitting across from the office. I took a number and waited near her door, unable to sit down. I leaned, hunched over, against the wall. I was obviously in a lot of pain. I watched the secretary as she worked with the techician and silently willed her to move faster.

After what felt like an eternity but was probably no more that a minute or two, she finished what she was doing and called me into her office. I handed her my form and explained to her that I was there for a urine test, and was in a lot of pain. She handed me a cup and I shuffled off to the washroom.

Once the urine sample was collected, I felt 100% better. One good thing about being in such extreme pain is the almost giddy sense of relief that comes when the pain is lessened or gone. I came out of the bathroom walking upright and smiling. I dropped off the sample at the lab window and marched out into the sunshine, awash with relief.

It was only later, when Grace mentioned it, that I thought about the man sitting in the waiting room. Grace thought it was funny, that I had been in so much pain when I went into the bathroom and came out looking ready to take on the world. It occurred to me, though, to wonder if perhaps he thought I was faking the pain, maybe to get in to do my test sooner.

One of the consequences of having an invisible chronic illness is the tendency to expect people to think that I am faking. After all, it happens. Whether it is said to my face, or communicated in more covert ways, it always unnerves me. I know that I sometimes don't look sick. When I am in pain, I often just look tired or cranky.

It is entirely possible that the gentleman in the waiting room thought that I was faking. After all, who goes into a bathroom in agony and leaves looking perfectly healthy? Still, I have to allow for the possiblity that it's not even an issue. There's nothing I can do about it, either way. Except to accept the experience as a reminder to be open-minded and open-hearted when it comes to others. I am just as likely to have pre-conceived notions about others as others are to have pre-conceived notions about me. It's a lesson I need as much as anyone.

I mentioned this in my previous post about September being IC awareness month, but it bears repeating. The real challenge in our world is to allow ourselves to be others-aware.

Still, it's a challenge worth taking on, for all of us.

September is IC awareness month!

What? You didn't know that September is IC (interstitial cystitis) awareness month? Of course you didn't. Let's face it, for most of you, I am the only person you know who has IC, and some of you haven't even met me yet. How self-involved is it of me to even write a post about this? I might just have well entitled this blog post, "September is ME awareness month." Egad.

But still, IC awareness month it is, and so I have painted my toenails blue because blue is the official color of IC'ness. Yeah, I thought yellow would be a better fit too. Go figure.

For the curious, there are websites with lots of information about IC. If you are a regular reader of my blog, you have some idea of what it is like to live with this chronic, painful bladder disease. Really, though, asking you to become more aware feels uncomfortably narcissistic. This really isn't about me.

I am fairly open about my experiences with IC. I know that the descriptions of the treatments, procedures and pain leave some of you squirming in your seats. Still, you listen and care. Seriously, you people rock.

Honoring something like IC awareness month, though, can also be about other-people awareness. This month, like all the other months that have illnesses, conditions and difficulties attached to them, is about being aware that other people are dealing with stuff. Hard stuff. Stuff like cancer, depression, suicide, heart disease, and intellectual handicaps. We live busy lives, and so much of the suffering that people go through is invisible to those around them. It is too easy to shrug it off, to hold up ignorance as a justification and to plow our way through life without paying attention to the people on our path.

If anything, awareness campaigns encourage us to be others-focused, no matter what issue they are dealing with. To be grateful if we are among the ones who don't need an awareness month. To be informed, for those around us who might be struggling.

One of the difficult aspects of many of these illnesses and and conditions is that patients are weakened emotionally, physically and often mentally at a time when they most need the ability to understand, ask questions, seek answers, assert themselves with health care professionals, and cope with an endless schedule of tests, appointments, medication and treatments.

Contrary to popular belief, I don't think that it is necessary to suffer illness in order to be able to understand, to relate and to help. My best friend is proof of this. Gloriously healthy herself, she is unfailingly understanding and compassionate. She "gets it". Love has a wonderful way of doing that for us. That's something we all can do for others.

So, for those of you who have asked questions, cringed in sympathy when I am flaring and taken the time to understand a bit about IC, I thank you. You bring me comfort and make this journey immeasurably easier. Your prayers, support, encouraging words and sensitivity mean so much to me. You walk this road with me patiently and compassionately, even if we do have to stop at every washroom in every rest-stop along the way. I love you.

We all know the old adage about not judging others until we have walked in their shoes. Let's allow awareness months to be a continuous reminder that there are a lot of people wearing some heavy, ill-fitting and painful shoes on some really, long, difficult journeys. We can't always tell, but we can care. And caring means everything.

Now...it's potty time...

Saying Good-bye

Grace and I went to a wake tonight. We said good-bye to a friend, the best man at my wedding, a father, son, brother, friend, soldier and a wonderful young man. His name was Olivier, and he was one of the sweetest people I know. I haven't written about his death, not because I haven't been thinking about him. On the contrary, I have thought about little else over the past few days. I haven't written about him because I don't know that I can do him justice, and I don't know how to write about the way he died. Olivier committed suicide.

Two weeks ago, I could have easily written posts, even a series of posts on suicide and suicide prevention.

Now, I am left without words.

Two weeks ago, I would have felt confident enough in my understanding about the issue of suicide to freely share my thoughts.

Now, I don't understand anything. I haven't a clue. I don't know why. I am humbled by the magnitude of pain; Olivier's, his family's, his friends', his fellow soldiers'. I hugged his mother, wept with the mother of his children, and all I could say is, "I can't imagine it, I can't imagine how hard this is for you." I held my daughter and cried with her as we looked at him in the casket, and all I could say is, "How can this be?"

I don't know.

All I do know is that Olivier had a brilliant smile. Grace says that he twinkled, and he did. It was like there was always the possibility that he had some bit of fun or mischief planned. He was a devoted father, and a brave soldier, a faithful son. He loved his family, and wore the title of "big brother" with pride and strength. He stood by my husband at our wedding in his uniform, and was a dashing, gentle, powerful, honorable tribute to his family and his country.

There will a time later for posts about issues and solutions.

Today is a time to remember Olivier Pilote.

He was a light, and the world is a little darker for his loss.

Spiders, anyone?

This was written as a Facebook note on Friday,August 26th.

Okay, I am going to admit it. I am feeling quite proud of myself. I posted last night on my Facebook profile that our porch was covered with spiders. The fat, hanging-around-the-porch-light-w/the-bugs type of spiders. At one point, I counted over 25 of them. Grace and I were heading out to put the recycling bin to the curb. We decided that it could wait another week. Several of the spiders had gotten inside (How?!) and with a fair bit of squealing and waving of rolled up newspapers, we managed to squish them all. But the outside ones...



I resolved to go out today to buy some heavy-duty spider killing spray. Forget organic. We've got no time for organic. I came home with the meanest can of bug spray I could find. Grace is heading to Vermont for the week-end with her dad, so I waited until they left and headed out to the porch with the spray, a broom and a series of deep breathing exercises designed to keep me from having a coronary collapse in the midst of my arachnacidic duties. And yes, I made up the word arachnacidic. Because I can. :)



Apparently, after a night of gorging on the bugs attracted to my yellow, bug-free porch light, spiders crawl into the nooks and crannies of my porch roof for a long day of slumber. Not surprisingly, when I began spraying the uber-lethal spider spray into every nook and cranny I could find, the little darlings woke up. And came out. In droves. Drunken, wobbly, fat, leggy droves. I shrieked and jumped backwards off of the porch. Stood in front of the porch, peering carefully up at the ceiling. Did a little shake-the spiders-off dance. I think I may even have moaned a bit. Wondered out loud how long it would take them to die. Then, I decided that I didn't have the time. With a broom, I started sweeping the swaying, dying spiders off of the ceiling, squishing them on the floor with the mop and stomping on the ones that managed, somehow, to stumble away.



I sprayed again. More came out. I squealed and jumped again. Muttered, mumbled, moaned, prayed, swatted countless imaginary spiders out of my hair, swept, squished and stomped.



Repeat as necessary.



This went on for three more sprays. I won't lie to you. As I write this, my skin is literally crawling. I brushed my hair into a sleek ponytail, so I know that there are no spiders in there. I have checked under my shirt repeatedly. I'm going by faith now.



And, dear reader, if you are the sort of person who likes to remind people like me that a fear of spiders is irrational, rest easy. I know that the fear of one spider is not rational. The fear of 25 fat, furry spiders falling from the porch roof onto my head, on the other hand, is completely rational. Spock-rational. Seriously. Don't ask me why. It just is.



My point is, despite my considerable fear, I managed to do what needed to be done. When I last peered outside, there were a few more spiders that had wandered out of their hiding spots, presumably to die. I don't hate spiders. In fact, I find them fascinating. Last night I spent several moments watching a spider navigate the miracle of his web to get to the small flying insects that he had managed to snare. I see the genius of creation, the intricate design, the wonder of nature. All this drama was taking place just outside my door window. One spider, building a web, catching bugs, living life, is interesting. Bringing 24 of his buddies along, and it becomes a nightmare. A nightmare that I, with a lot of prayer and faith, was able to walk through and deal with. I am grateful. And proud.



Not that it's over. To tell the truth, I have a feeling I just managed to kill the stupid ones. Or the impulsive ones, at least. I'm pretty sure that there are more tucked away, waiting for nightfall. If there is, I'm ready for them. I am armed to the teeth, locked and loaded.



If you live in Huntingdon,and you hear a commotion going on, it'll probably be me. Shrieking, jumping and mumbling my way through another spider battle. Don't grumble, though. Remember, every spider I kill here is a spider that won't show up on your doorstep looking for dessert!



You're welcome. :)

Living Out-Loud, or TMI?

I was lying in bed last night trying to keep the cat off my face and thinking about the instillation treatment I had yesterday, when I started to wonder if I am coming too close to the TMI line. (For those of you not familiar with web speak, TMI means too much information.) To be honest, that line has always been a bit blurry for me. I mean, I didn't really get into the details (oh man, the details!), and I make every effort to be respectful to the people in my life when they make appearances in my writing, but I also write about some pretty personal stuff.

At one point while prepping for the procedure yesterday, the CLSC nurse, Rachel, commented that she would be using a size 12 catheter rather than the size 16 that the doctor had prescribed. This prompted a conversation about how oblivious doctors can be to pain. Logically, for a patient w/IC pain, the smaller the catheter the better. Many patients even ask for pediatric catheters to be used. Doctors don't seem to take this kind of thing into consideration. This is when Rachel told me about her studies in pain. I commented that doctors don't equip patients for the effect that chronic pain will have on them, emotionally, mentally and physically. Rachel agreed, "That's because they don't know."

Her comment sums up a good part of why I write so openly about this stuff. I am not the kind of person that believes that knowledge is the solution to all problems. Selfishness, arrogance and hate can whip knowledge's behind if we let them. Yes, people do better when they know better, but only if they want to do better. I do believe that knowledge is a beginning, an opportunity, and I also believe that once we share knowledge with others, ignorance is no longer an excuse.

I have people tell me that they had bladder infections, and it wasn't a big deal. So what was I making such a big fuss about? Once I share that IC pain is more like the pain of bladder cancer than a bladder infection, if they still chose to see themselves as tougher than I am because they were able to handle a five day bout of an UTI better than I handle over ten years of IC, then they no longer have ignorance as an excuse. There is something darker, more insidious there. Something that tells me to back away.

That doesn't happen very often, though. I made a commitment a long time ago to live out-loud, to be open and honest about my life. I am too capable of wearing masks. If you ask me how I am in the grocery store, I will instinctively smile and say "Fine!" even if I can barely stand up straight in pain. Sometimes this is appropriate. Not everyone needs to hear everything.

Still, not only is there true strength that comes from the support of others when I am brave enough to be honest about what I am going through, but there is an understanding that not only am I not alone, but neither are my readers. You go through things, too. Big things. Scary things. Painful things. You need not be alone.

Another reason that I share about my life so openly is because I have given my life to God, and I believe that He wants to bring meaning and purpose to my pain. I don't believe that this life is all there is. I don't believe that this body is all there is to me. And I don't believe that my struggles are for nothing. Over and over and over God lifts me up and strengthens me in ways that are wildly wonderful and supernatural. I am not capable of working up even a semblance of the joy that He gives me. I spent most of my life before Christ in debilitating depressions. Now, when I really have something to be depressed about, I experience joy and wonderful moments of happiness on a daily basis. Yes, I feel sad. Yes, I mourn my losses and have moments of deep sorrow. But joy comes in the morning. When I joke about things, I am legitimately having fun with the silliness of life. I see the humor in many things. I mean really, aren't chickens the funniest creatures ever? I used to use humor to hide from pain. Now, I just find so many aspects of life ridiculously funny. That's a God thing.

So, TMI? I don't know...I'll keep an eye on the line, and try not to cross it. Especially where my loved ones are concerned. As for my own story, I have a feeling that when I finally write my book, it'll be an open book. Just like me.

Oh, btw, as an instillation update, one of the side effects of the treatment is a garlic smell coming from the patient. It's a result of the medicine seeping into the bloodstream and creating a chemical reaction. According to Grace, that kicked in last night and is still going strong. She greeted me this morning with, "So, how'd you sleep, garlic clove?" Apparently, it's not the cool, garlic butter kind of garlic smell, either. I don't smell it at all.

At least I'll be safe from vampires....

I finally bit the bullet....yowie!

I went this morning to pick up the medication for my bladder instillation, and then took them to the CLSC to have the treatment done. I have two things to say.

Firstly, wow.

Secondly, OUCH!

Wow, because the CLSC nurse, Rachel, who did the treatment was awesome. She never mentioned teaching me to do it myself, and I certainly wasn't going to bring it up. She says there is another patient who has IC, and is having the treatment as well. Rachel seemed pretty knowledgeable about IC, and was tremendously sympathetic and compassionate. We had a great talk about dealing with chronic pain. She said she spent some time studying chronic pain at University, and it shows in her attitude and the way she dealt with me. I asked if she would be the one to do my next treatment, and she said that if I wanted her to do all my treatments, she would be glad to do it. I felt so taken care of, which is important. The fragile feeling that chronic pain sufferers feel makes it difficult to deal with these kinds of things, and feeling that they will be understood and cared for is so important.

Ouch, because it hurt. Seriously. Thankfully, it was over quickly, but now I have to hold this stuff in my bladder for up to an hour. Unfortunately, I wanted to pee seconds after the treatment was over. It's going to be a long hour. I am actually writing this now to keep my mind off of my screaming bladder. The treatment, while quick, was painful enough that I had to stop talking (now that's pain!), broke out into a cold sweat and felt a bit nauseous. At this point, even the bottom of my feet are twinging. Yikes.

Gracie came with me and sat in the waiting room, praying. What a gift she is. You know, people can tolerate a lot more pain and suffering when there are loving, supportive people around. Even though I can barely sit still here, I am so grateful to God for being there, for strengthening me, for provided a health care worker who was caring, supportive and efficient, and for providing Grace, who is now busy making me lunch because I can't decide whether it hurts more to stand up, walk around or sit here.

So...I've got 15 minutes to go. That's not too long...right? Right?

Sigh.

Oh look...6 minutes to go. Yay!