So what’s wrong with doing a 250km round trip journey for lunch?

In my books there is nothing wrong with making a 250km drive to grab lunch if you want to do so. Last Wednesday a few friends and I drove from the Annapolis Valley to the South Shore Town of Lunenburg for lunch. It was not a long planned meal, just a “Hey, let’s go to lunch.” followed by the question as to where to go.
The winning choice was a diner in Lunenburg called Large Marge's Diner. They serve seafood, burgers and like fare. Since Lunenburg is a working fishing harbour, the fish is fresh and very well prepared and the service was friendly and nice.
Lunenburg is a UNESCO World Heritage sites. Plus it is the home port of the Bluenose II.


The funny thing about living with Wegener’s is that I always feel tired. I cover for it when with family and friends by consuming caffeine and sugary treats to get a rush on so to be able to just keep up with the activity. I’m not talking hiking or road racing, just simple things like shopping, following a conversation, or has been the past-time of late, playing Monopoly. There are times that I have problems focusing and have to force my attention and come out with some strange ideas. It is either that or, lay down for a brief a nap.

Following lunch in Lunenburg, a game of Monopoly, a shopping trip for maple syrup, and a late supper of donairs, I went home and slept for the better part of three and a half days. Before going out for the day I knew full well that I would most likely crash for a couple of days after our outing. It was well worth it and I would do it again if offered. You have to make memories when you can. I got up Saturday evening in time to watch the New Year start and back to bed after the NYC ball drop. I got up at 730 and went back to bed by 900 for a nap. Mid afternoon I got out of the house to fuel up my car, visit with friends. I return home following my three hour outing and took a nap.

To add to the fun of sleeping the week away, I developed a rash. I was able to put the rash out of my mind with a little hydrocortisone cream and a low dose of Benadryl. I felt that if I took a full dose I would miss the arrival of spring. Part of my Rx reserves include a supply of the OTC medications I may need, plus prescription strength creams, lotions and rinses.

The year 2005 was a restful time for me. I spent most of the months of February, April, May, July, September, October and November resting. If not sleeping, I would just veg in front of the computer, or TV. Even reading was not a possible activity as my eyes hurt too much to read more than a few minutes.

My mind pushes me to do lots of fun stuff and I try and sometimes do. Most of the time I play the price by having my body ache and I need to recover by taking it easy for a bit. But most times I have to modify my plans to meet my reality. More the case I did not have the energy to do more than basic personal care and light house work. If I over do it and fatigue myself, I have a hard time balancing the pain from joints and muscles and ongoing spasms, headaches and other ouches that are my normal world.

The truth about being ill is that everything you do has to center around your illness. For example diabetics need to balance sugar intake and insulin levels, people with mobility problems look for sturdy surfaces in washrooms and keep an eye out for their footing. In my case, I schedule activities around the side-effects of medication. Mostly I need to find a balance in sleep, activity, food and fluid intake and bathroom habits.
On some days, I have frequent bowel movements a bit more on the runny side than on the happy normal side that many of us received praise for during the toilet training phase of our childhood. Not that I wish to enter a dialogue about bowel movements. It is just part of my day and whether I’m able to go on a dash to the mall, drug store or visit friends. Other times I have to load up on high fiber foods, stool softeners and other advice my doctor has made for such events following a few days without bowel movements. Five days in my current record.
That raises an additional issue. I have observed that one of the diagnostic processes of medical professional is the description of wasted products emitted from the human body.
“What color was the stuff you coughed up?”
“Did it look like it contained blood?”
“What color is your urine? Has the color changed? Does it have an odor? What does it smell like? What is the volume? Let’s do a 24-hour urine study. Here is a jug for you to place your bladder output in for a 24 hours period. ”
“How much blood is coming out when you blow your nose?”
“How much ear wax are you producing and what color is it?”

One of the questions I get with each exam is about the visible appearance, the size, color, texture, volume and other descriptions of bowel movements. “Is there blood? How much? Is there mucus? How much?”
Since I own a digital camera I have been thinking about documenting the pre-flushed toilet and doing a Power Point presentation on my Palm T3 during medical visits.
I find it funny that a doctor spends long hours studying all aspects of the human body and one of the most valuable pieces of information comes from the description of body waste products.

The other bathroom problem is the sometimes never ending pee trips. It is not unusual for me to stop four times during a trip to the city. I have discovered that my kidneys have are able to produce a bladder of urine in 20 minutes. Some days I can set my clock by it. When I go to the movies I miss a good chunk of a film making washroom trips. On that front, I think theaters should have more washrooms and have urinals with a viewing window to the movie screen. I guess if I didn’t want to miss the film I could refill the beverage cup. There has to be a reason why they make such large cups for people going to a two or three hour movie that is preceded by 20 to 30 minutes of movie ads and television commercials.

So that is what I call fun.

Happy 2006!!

Every year I make the same New Years resolution and try as I might, I can not seem to make it through the year.
So here I go again:
I resolve to be more patient and tolerate in my dealings with the stupid, moronic, half-witted, idiotic, ignorant, simple-minded, weak-willed, narrow focused, well and not so well meaning individuals. However, I reserve the right to punch in the throat those who say, "God only gives you what you can handle."

So here’s hoping I can make it through the year and not have to punch someone in the throat.

Philips Deeper understanding is the mark of BrillianceTM

This morning I spent the better part of 30 minutes or so in a CT scanner. It was not a full body scan, just head, neck, chest, abdomen, pelvic area and thighs. Just my arms and legs below the knees where scan free. Not sure why the doctor didn't want to look at my lower legs, they are my best feature.

The Valley Regional Hospital has a nice new CT scanner. A Philips Brilliance Computed Tomography machine that is. In appearance the machine is a very sporty and stylish model.

Unlike other CT machines I have been on, The Philips is much more user friendly, or should I say patient friendly. The machine appears to be smaller than some of the monsters that I have been on before. I’m guessing that hospital workers didn’t have to cut walls down to get the machine into place.

The biggest difference is the tabletop where the patient lies. It does not go four feet in the air so I was able to get on and off the tabletop without having to have the height adjusted. On other machines the patient gets on the tabletop and the table rises in the air to meet the opening of the scanner. I wonder how many people have fallen off the tabletop before it returned to the floor.

A couple of other things made me feel a bit at ease having my body sectioned and imaged on this machine. Since the machine is a bit newer than other CT machines that I have been in, it does not have the wear marks and cleaning residue older machines have. It is very quiet. Other then the hum of fans and sound a similar to the agitation phase of a small washing machine. Instead of a PA speaker crackling the voice of the operator, a recorded voice instructs the patient to, “Breathe in. Breathe out. Breathe in. Hold your breath. Breathe.”

One of the best parts of the day was that the nurse was able to find a viable vein to tap for the IV. As the intravenous contrast dye was given, there was a slight burning sensation in my arm and I could feel warmth flush over my body. The warmth lasted in the more blood rich areas of my body. The same areas of my body to have experienced vasculitis, had a warm feeling. I’m sure it was the dye and not love.

Gee, it has been a long time

I have been a very bad person to allow a month to pass without posting an update on my blogg. I have been otherwise focused.

No, I have not been running marathons or hiking trails. I have been hit hard by Wegener’s and have been recovering. Lung, sinus, joint, muscular, gastrointestinal, swallowing, swelling, and a few other problems befell me this past month. What energy I have had I used to do the normal daily stuff that I once took for granted. When I have gone out, I usually had to take the next few days to rest and recover.

I find it funny saying that I was tired and needed to recover from a few hours of shopping, but that is the strange truth. Best of all it was not a power shopping event.

By this point in my illness, over a year and one half into it, one would think that I would know what I can and cannot do, however, my mind seems to forget that my body can currently not do what I want it to do. After hitting oneself in the head or on the foot with dumbbells when muscles give out, a sane person would not lift weight. This dumb-ass bought padded dumbbells. Sadly, they hurt just as much as the regular ones.

I have been spending a bit more than the average in medical waiting rooms of late.

More funny observations to share at another time.

I got out of the house for more than 4 hours

This evening I got out of the house for more than 4 hours. Best of all I didn’t have to nap in my car. Although, staying awake was not easy as I was at a public meeting at the Municipality of the County of Kings Council Chambers.

Funny how our local government does not seem to be concerned that they are holding safety of the ground water for Kings County in their hands. They seem to forget that well water is the only source of drinking water for the residents of Kings County, and that well water comes from the ground and that allowing environmentally unsound practices a few feet above the aquifer.

In Nova Scotia, Environmental Assessments are required prior to beginning of many construction projects. The property in question is on Bond Road in Waterville. Twin Mountain Construction has been mixing sewage sludge with sand and selling it as top soil and fill what must be close to ten years. Recently they had an Environmental Assessment completed. No concerns were raised by the whore who completed the study. Strange that the NS Department of Environment and Labour would accept an Environmental Assessments completed on a site that has been stripped of any natural state in the 90’s.

A public meeting may not be most people’s idea of a way to spend an evening. Nevertheless, I was out for more than 4 hours for the first time in over 4 weeks, without napping.

Visitors in my yard

Fun at the ENT Clinic

Last November my treating Rheumatologist referred me to an ENT specialist to investigate my sinus and ear problems, common predicaments of people with Wegener's granulomatosis. This week I had my otolaryngology appointment.

I parked my butt in the waiting area of the ENT Clinic and noticed that the other patients were going in and out of their appointments at a quick pace. I thought that this maybe a waste of time, ten months of waiting and less than 10 minutes to see the doctor.

This was not my first visit to the ENT clinic. When I was in hospital in March of 2003 one of my outings was to the ENT clinic. An Otolaryngologist Fellow who was overjoyed to examine a Wegener’s patient, checked me over in the clinic and confirmed that I had Wegener’s. With this experience in mind, I had an idea what was in store for me during this visit.

When my turn came, a nurse accompanied me to the examination room, adjusted the exam chair and departed. A few minutes past and in came the doctor. The visit started with introductions and a quick peek of my inner ears, nose and throat with an otoscope. A few shots of xylocaine a local anesthetic sprays in each nostril and a few minutes more of talking about Wagener’s and the fun began.

A visit to an ENT clinic offers a mix of experiences of taste, smell and sword swallowing. For starters, there is the taste of the xylocaine, the flavor of a tongue depressor, the taste of the gauze the doctor used to cover his fingers as he pulled on my tongue to get a better look of my throat. There is even a taste of metal from the exam tools and mirror. On a positive, the scar tissue left from the mouth sores has de-sensitized my gag response, so the doctor had to give that a test.

The sword swallowing skills came in the form of having an endoscope in my nose to look at the sinus cavities and down my throat to look at my larynx. At one point, I thought he was trying to see how much change I had in my pocket or was looking at changing specialties and wanted to see what my colon looked like from the top end.

As-a-result of his findings, I will be experiencing more procedures and seeing him on a regular basis. Next stop in the ENT journey is to have some hearing test completed and see him again next month and again a number or times annually..

As I exited the hospital complex, I noticed that the xylocaine was wearing off. I know this because my nose and throat tingled. With each inhale and exhale, my face and throat tickled and I did a mild giggle. It just happened that I was giggling as I walked past a few groups of smokers on the edge of the hospital parking lot.

Gray colored people, some bald, others wearing head coverings. A quick glance noticed most had IV shunts on they hands or forearms, along with hospital bracelets. I quickly realized that the groups were cancer patients taking a smoke break. I confirmed this assumption as I heard a woman begging an older woman to stop smoking. The older woman said something to the effect that she already had cancer, no point stopping now.

I felt bad about giggling as I passed this group. I have a general idea how they feel from my own experience over the past couple of years and from what my mother went through five years ago when she was undergoing Chemo and radiation therapy.

I could not help the fact that my face tickled.

Later, when I told my brother that I felt bad about giggling as I passed smoking cancer patients he jokingly ask if it was a case of too high of a setting used on the radiation machine if the cancer patients were smoking.

Making bad jokes runs in the family.