March 2011 archive

Help Fill a Dream is a Vancouver Island organization that fills the dreams of children with life-threatening conditions, and also provides financial assistance to families with sick children. They have granted over 1,900 wishes to Island kids!! They are a fantastic group of hardworking, big-hearted people, who have helped me and my family enormously over the past few years. They are certainly a can-do organization. Recently, they had their big ‘Rink of Dreams’ fundraiser, which is a 24 hour hockey marathon! A really nice girl about my age named Rachael and I were asked to be honorary captains, to drop ceremonial puck together- how cool is that? There was a rehearsal a while ago, where I got to meet everyone, and see how things were going to go and all, and yesterday was the big finale of the fundraiser. Amazingly, a company called MacQuarie Group matched the donations, and HFAD was presented with a check for  $80,000 (with hopefully another $20,000 en route, bringing the final total to $100,000!). I have no doubt this will quickly be turned into a whole lot of wishes.

Check presentation ceremony :D.

I had no idea wheelchairs could go on the ice, but apparently it is no problem. Before I was sick, I was a pretty poor ice skater, but could manage by holding on to two people and constantly falling or nearly doing the splits. Lets leave it by saying that I lacked control, and had to run into things to stop. I’ve never played real Canadian ‘ice’ hockey, but loved field hockey at my old school, and what I lacked in skill I made up for in enthusiasm.

The whole thing was just a whole lot of fun, and exciting. I didn’t stay very long, because I was feeling so poorly, but enjoyed watching all the costumed characters unfolding the ginormous flag for the singing of ‘O Canada’. I think the people were in costumes partly because the most popular wish request is a trip to Disney Land :D. Very cute.

Darth Vader, alongside Princess Leia, Snow White and Captain Jack Sparrow.

The Gatekeepers Den

My second appointment with Dr. Ghesquiere went just as oddly as the previous one. This time, I was in to talk about my blood infection (enterobater cloacae), which I was assured would be handled promptly and effectively. Of course this wasn’t much of a comfort, after I had been dismissed as ‘not having Lyme disease’ in a brief encounter with both partners of the Infectious Disease medical practice, the only one on the Island. It was deemed prudent to have my blood cultures retested, to make sure I was bacteria-free, so I could stop taking the Bactrim DS.

Dr. G reviewed my bloodwork, and was confused by my severe anemia and off counts. The obvious answer, that the tick-borne bacterium in my body was feeding off these cells was a little too obvious. Captain Confusion and Disinformation is hard at work.

I am shocked that doctors find it so useful to repeat very definitive tests over and over again, looking for things that are only explain a few of my symptoms (at best). My blood work, testing for Lupus, rheumatoid factor, vasculitus, connective tissue disorders, protein production (rule out cancer, bone marrow disorder, over production of proteins in immune system), which all came back negative, yet again. I am not sure whether this is the second to fourth time I have had these tests done. These are the popular string that doctors usually cling to when they see me. Its the old ‘oh-anything-but-Lyme’ strategy. If you test a patient for enough things, you could find something wrong (which is what they hope)…something to explain all of my straaaannngeee symptoms.

Perhaps it is just a perception, but the doctor seemed to be working very slowly. We only have about half an hour, so bothering to slowly explain all the things I don’t have, or asking the same questions again does not make sense to me. I get the impression he is stalling, trying to get through as little as possible with us in the short time we have, or perhaps I only think this because I know it to be true. I am detecting a pattern with this sort of doctor.

Dr. G’s wording throws us all, latching on to an expression and holding on for dear life. In our last appointment, the catch phrase du jour was, ‘I am obliged to tell you…’. Today, I am asked, directly, because I am now an adult, whether I would be willing to see an adult rheumatologist at the Arthritis Soceity (even though my rheumatoid factor is negative) and a physiatrist. He said if he was sitting in my shoes, these would be the places he would want to be, the doctors he would want to see. How infuriating, that the doctor I could use most of all is sitting in front of my, and smiling benignly and lying that any other doctor would, essentially, help. Except not his kind of medicine. I am feeling too sick to digest this odd appointment, so I shall put off more reflection until I can think without my brain throbbing

City Lights and Harbour Sunset

I have been healing nicely all week. Already the incision wound doesn’t hurt as much. It mostly pains me when I try to move my shoulder, pulling at the stitches, which gives me an odd pinching sensation. Its hard still to roll over in bed, or to pull myself up from the chair, but I know I will be back to my old self before long. I didn’t leave the house all week, but instead caught up on two seasons of Halifax Comedy Fest (best show ever, if you haven’t watched it! Atlantic comedy is where its at!) and the Winnipeg comedy Fest. Laughing hurts sometimes, as my ribs are very painful and tight, but it feels better. A nice ab workout, that how I like to think of it. Yesterday, I made a pilgrimage to the library, but it was a very brief one, as I could barely reach things off the shelves, which was very annoying. Its like being in a museum of soft toys and not being able to touch them! Alas.

The light today was of a pure, clear kind, with dark blue clouds against a pure baby blue sky. It is magically at sunset, at the Inner Harbour. I can see why it is such a popular tourist stop! It is perfectly situated to catch the final rays of the sun and it sinks below a treeline dotted with condos. If you squint your eyes, so the buildings all blur together, you can almost imagine what the virgin landscape looked like, before man’s machines shaped and twisted the land. I believe I read somewhere that the native Songhees called the area something like ‘cradle harbour’, and would put a baby’s cradle in the waters as a blessing of long life or wellness. I forget the details, but if any place I have seen had a more fitting name, I cannot recollect one.

The path is very nicely paved, and relatively flat. The odd thing about that area is the sheer amount of condos surrounding you, towers of glass and steel stretching up up up to the blue ceiling. And yet, there are never any people around. The streets nearly deserted, the only sounds from boats and planes touching down on the water nearby. Its like a background hum, which you can hear over the water lapping on the shore.

It is very relaxing being by the sea. I feel certain that there really is something to that old adage about going to the ocean for your health. The minerals in the air the are beaten off the rocks, the soothing sounds of water moving, the relaxing blue-grays. Peaceful. It was very cold, but just what I needed. Really cheered me up. I haven’t been feeling well these past few days.

Outta There!

After nearly 2 month of a improperly treated blood infection, my port-o-catheter finally had to come out. It is nearly impossible to treat the infection if it gets inside the port because there is no blood flow in the device itself.

We were instructed to go to the ER at 8 a.m. and tell them that we were here to have the port removed by such-and-such a surgeon. At least I didn’t have to check in the night before, which is usually standard. Being in the hospital for a few hours was enough for me to see that I could have never slept, what with all the beeping and bright lights and windows and people always moving. Apparently, if you go through the normal referral way of doing things, it would take forever to get into surgery, but this way it only took all day. We waited for awhile in the ER waiting area, and very shortly met with the surgeon, who said the port needed to come out, and someone would take it out today. I am so used to being brushed off at medical appointments that I was surprised that the doctor was really nice and gentle.

You can’t eat or drink (arrrrg!) if you are going in for surgery, so they started an IV line in my arm to give me a little sugar water. I just tried to stay as still as possible and not think how exhausted I was with little or no sleep, and how uncomfortable the IV was, and how generally malaise I felt. Thankfully I had several hours worth of audio book on my iPod, so I could just close my eyes and follow the story. I was taken ‘upstairs’ to the surgery daycare, where I could lie down and rest until they came for me (duhnn dun dunnn). The nurses were all so kind and understanding, and didn’t come to poke and prod me.

I obviously didn’t want to know all the nauseating details of what was going to happen to me once I got unconscious, but I really wanted to keep the port. We paid for it (literally) and it was inside my chest for over a year…we weren’t good friends, but we had an understanding. For safety reasons, you can’t keep the devices, but the really nice resident anesthesiologist, Dr. August, took a picture for me! It looks a little disgusting, but the pulled it from my chest, after all! He said he’d clean it up for me, so its not too icky to look at. Its strange to think all that cold fit under my skin.

Nice to finally know what the damn thing looks like!

Once I got to go rest in the recovery room, I was allowed to eat. I had heard such terrible things about the food at the hospital that I was worried about what kind of vegan food might show up, but the hummus, pita and carrots ‘n celery were just delicious. There was soy milk too! I was really really hungry by late afternoon, but my mum and Nancy thought it was pretty decent too! 

Yes, the food came from a hospital cafeteria.

Its funny, but the incision hardly hurts at all…in fact, it is practically cozy compared to the pain in the rest of my body though. It just feels like my skin is stretched and that someone had their hands in there. It pinches when I tense those muscles, but I am avoiding doing so quite nicely. The next big job is to clear up the infection, which would be nice, so I could get another IV line of some sort (probably a PICCline) put in my arm. Gotta get back on the wagon lol.

Post-Wake-up look…(that’s iodine, not blood)
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