Monday, February 07, 2011

Silence is Deadly

“He [sic] who conceals his disease cannot expect to be cured”  ~ Ethiopian Proverb

For the last almost three months, although I've been as busy as always and moving ahead on projects and ideas, I've also not entirely been myself.  I've been notably exhausted, unmotivated in some veins, somewhat disengaged at times and pretty cranky.

For each symptom, there seemed to be a rational correlation; there's been stress at work with a lot of change going on and I've been pretty unhappy with how most of that change has been managed. Still at work there's been a couple of new, very high profile projects that I was given an unexpected and high profile role on causing me to work longer days and highlight some long standing frustrations that anyone deals with working for a huge organization like I do. The longer days meant a creeping into my nightly home routine, causing that to suffer some negative impacts and necessary disengagement; I'd been pretty unhappy with how things were going for the last while and it was really starting to show.

There was another element at play here though.  As some of you may recall, I wrote about a health issue I had in 2009 and some of the symptoms of that pink bowl condition had resurfaced; or so I thought.  My surgeon had told me that the banding procedure that I had gone through would likely need to be repeated down the road, so I was assuming that the same condition had returned, and I failed to act right away. I was bleeding again with each and every visit to the washroom and it wasn't going away and this time it was going on for months. I thought, "I'll just give my body some time and let's see how it responds; maybe it'll fix itself somewhat?"

Yah.  Not so much.

I did finally start to move and took the right steps.  I went back to my family doctor and got a referral back to the surgeon/specialist that treated my original condition. Two weeks later, I saw her and we scheduled a new scope and that was the go forward plan.  My body, on the other hand, had its own plan.

On the weekend of the 29th of January, my husband and I went out on the Saturday night to celebrate my brother-in-law's 50th birthday.  It's always a great time when the family gets together and since my mother-in-law makes a great drink called a "Busey Special" consisting of a lot of vodka, I decided to indulge and had her make me a triple...and then another.  I was by no means wasted when my husband drove us home that night, but I certainly wasn't sober either.

The next day, we took our twin boys to visit extended family in London and while we had planned to spend the day on the slopes of Boler Mountain, I was decidedly not up for the task and we all agreed to just make it a more low key visit rather than push ourselves.  I wasn't feeling particularly hung over, but I was feeling decidedly unwell.  A glass of wine was no hair of the dog and it wasn't sitting well with me at all. I felt lethargic and just... unwell.

That night, my body started to yell at me.  My frequent trips to the toilet tripled over night.  Monday, counting the day in a 24 hour stint, it was 24 trips. Tuesday, 18 times. We called the specialist's office and let them know what was happening.  My condition was becoming particularly painful and untenable.  Wednesday, 15 times. The doctor's office called back and told me to head to the Emergency department on Friday morning at 10 am. Thursday, 19 times.

I was fully bed bound right from the get-go.  Not only could I not be far away from the washroom, but each episode was utterly physically and emotionally exhausting. The process was painful, the relief seemingly brief and then I would crawl my way back to bed in a slumping heap.

I had to call sick into work right from Monday.  I realized that I couldn't focus in on anything long enough to do anything productive, not even read a book, so work, even from bed wasn't doable. My attention span was good enough for the odd video, Facebook and a lot of retweeting on Twitter and that was about it. I can't remember the last time I took a sick day from work.  Even when I'm unwell, I can usually sit in bed and still manage to work remotely through phone calls and meetings, but not this last week. My body was shutting me down.

By the time Friday morning rolled around, I didn't trust myself to drive myself to the hospital, so I asked my daughter to accompany me.  We arrived, went through triage and waited about 1/2 hour to be called.

The decision was made to take me straight up to the day surgery floor for my scope, a week early, which was just fine by me. We headed upstairs, I kissed her good-bye and told her to be close to her phone for when she would have to pick me up again.  Although there were at least ten people ahead of me, I was escorted straight through to the pre-op bays.  Vitals were taken, enemas were administered and I was wheeled right into the operating room.

My surgeon's not known especially for her bedside manner.  She's hardly gruff, but she is an absolute no nonsense straight shooter that doesn't mince words or sentiment, and anyone that knows me knows that I have absolutely no problem with that approach at all.  I had mentioned to my nurse that although I was originally scheduled for a flexi-sigmoidoscopy, I had called the surgeon's office requesting a full colonoscopy and was hoping for that procedure that day, but my surgeon let me know in no uncertain terms that that wasn't possible without proper prep, and that we'd be moving ahead that day with the flexi-scope.

As we were about to start I was a little taken aback when she sweetly looked at me and said, "Don't worry honey, we're going to get you all fixed up." It was a small show of tenderness that immediately endeared me to her.

The scope began and within moments, I heard "urgent ulcerative colitis" and my heart began to sink.  The night before, my husband and I were trolling the 'net looking for some information on my symptoms and we were directed to intestinal diseases such as Crohns, Ileitis and Colitis.  I was smart enough this time around to not jump ahead and begin self diagnosis, but I was preparing for not great news.  Steroids, ostomies, surgeries. I joked with my husband, "ohmygawd, if I'm on steroids, am I going to get fat?!" He laughed at me and noted that it could have benefits in the working out department.  Eerily enough, I have said to my husband on numerous occasions that I didn't know how people with Ileitis or Colitis managed to conduct themselves day to day, because any touch of bowel discomfort and I was just like a little mewling kitten.  Now I was going to get a close up look at what these diseases were really going to be all about.

Biopsies were taken and I rested on my side and told my surgeon what I needed. I told her that I can deal with just about anything, as long as I know what I'm facing. So, I asked her, "worse case scenario is an ostomy, correct?" "Correct and London can build you a whole new rectum if need be, but we are wholly remiss even discussing this right now." Okay, I thought, so here we go...nonetheless, I  was feeling a little overwhelmed and a touch weepy.

I texted my husband and my daughter to let him know what was happening and they started to work on getting back to see me at the hospital. No one was expecting me to not be going home that night.  I was being admitted immediately to hospital. Back to my pre-op bay and I was given an IV line for fluids (I had been considerably dehydrated for weeks) and a CAT scan was ordered.  Within less than an hour, I was wheeled to Imagery and the scan performed. I started my procedure at 11:30 am. By this time, it was 1:30pm and my scan was flagged as priority. Usually it takes up to a week to get a reading of one's CAT scan completed, so I was surprised to hear from the technician that my results would be ready by 4:00pm for my surgeon's review.

While I was really happy that things were happening bang, bang, bang, that I was getting the immediate attention I obviously needed, I was equally disconcerted that things were happening bang, bang, bang...because that meant that I was sick; really sick.

For all the complaining that Canadians do about wait times, and I am not belittling the validity of those complaints, seeing how the staff and the supporting resources and processes flew into action to manage my newly diagnosed disease, I was in awe at the responsiveness of the system.

By 3:00pm I was in my ward room, my daughter had brought me my ever important MacBook and plugs and BlackBerry charger. The rest could wait until my husband could gather my essentials. All I needed was to feel connected to my family, my friends and sources of knowledge.  Can't tell you how many times I blessed the WiFi gods. No smashing CPE for me.

For the next three days, I barely left my bed.  I was hooked up to an IV for fluids, antibiotics and nightly steroids. I laid in bed watching first-run movies on a streaming website hour after hour.  My only activity was getting gingerly out of bed to head to the washroom and when I was really adventurous, taking a prescribed stroll around the floor three times a day.

Pulling around an IV pump, there is just no way to be quiet or gracious. It's a clunky contraption that reminds you with every step just how sick you are. And then there's the "white hat". White hats are measurement cups with large wings that lay across a toilet bowl and capture your output. There is nothing more humanizing than sharing a washroom in a ward room and seeing your outputs being measured along with everyone else's and there's nothing that makes you respect and appreciate nurses more than when you have to put on the rubber gloves yourself and move the hats around to ensure that you're capturing your outputs in your own hat. What our nurses do for us is immeasurable in many, many ways.

My energy levels had been down for months already and now, I had not eaten anything since Thursday night and the last I had to drink was a clear tea on Friday morning. I slept horribly for little more than four hours each night and for the first two days, I was not allowed any water or any food whatsoever, so my cranky level was pretty high when my husband brought the kids to visit.  I was only good for a short visit as the ice chips weren't really cutting it for me.  By the time they allowed the reintroduction of Ensure for my first "meal", I was as sated as if I had just had a full steak dinner. Next, it was soup; cream of "something", some juice, some tea, some pudding. Morning was oatmeal and more Ensure and tea and my body was responding well.

Today, on my fourth day I was discharged from the hospital. As my surgeon noted, I'm ambulatory, my food intake has begun to increase, I can hydrate myself and it's safer for me to be out of the hospital where the opportunity to catch C.Diff or MSRA increases daily. I'll be monitored closely in the short-term and if my symptoms start to increase again, then I'm to return to the hospital immediately. My at home medications for the next three months are costing in excess of $1000. Thank gawd for benefits and employee group insurance plans.

So, while I'm far from being even close to well again, I am certainly better than I have been for the last few months.  The one thing that feels most surreal to me now is knowing that I have an active disease. I'm only just wrapping my head around the fact that this is something that will now never leave me and I will have to actively manage for the rest of my life, whether it's through medicine (which will hopefully be short term), but through also managing stress levels and my diet and exercise.

There is no known cause for ulcerative colitis and therefore, there is no known cure. It is merely something that is to be managed from here on in.

So, as before, the reason I'm doing such an accounting of where I've been health wise for the last few months is to do my part in breaking down the cones of silence that most people live in when they're managing a health issue. I know that I feel this sense of "delicately" dancing around the issue, using medical vernacular and the least offensive terms possible.  There seems to be this sense of shame or fear of sharing because we're talking about the most banal parts of being a human being; our ability to process our nutrients and produce waste. I do know and have been clearly reminded again that unequivocally, without one's health, we have nothing. Therefore, I'm willing to share and support the dialogue.

I have been immensely touched by the openness of friends, new and old, in sharing with me their struggles with similar diseases since I've posted that I was in hospital on Facebook. I'm amazed at how prevalent these diseases are and just how many people are affected by them. I've always believed that knowledge is power and the more I learn about autoimmune diseases and the more I share, the more I can hopefully help someone else who's facing some uncertainty with their own health.

So, while I'm a lot stubborn and a bit thick at times, I am learning that being ill requires patience and listening to those who know.  I cannot immediately return to my old pace, so I won't.  I must rest. I must manage my stresses. I must start to pay more attention to my diet and how my body feels. I must ask for help.

So, to all my friends, IRL and online, who wrote me words of encouragement, dropped by to visit, loaned the family their driveway and shared their own health stories with me, I am once again profoundly touched by your love and support.

To the incredible nurses at Stratford General Hospital, thank you kindly for your help and support and for having the wisdom to unplug me long enough to have a revitalizing shower when I needed it most. To my surgeon, gawd love you woman...

And of course, to my family, for coming to visit me with kisses and cuddles, sharing movies in the lounge and showing me just how much they love me.

1 comment:

Anonymous said...

Very honest, thanks for sharing. Take care of yourself :)