On your Mark, Get Set....

Go!!!
Two years ago, my hunk of hugs, John, sometimes referred to as Wookie (which is another post sometime), said he wanted to do the MS Bike Tour. It has varied in length over the years but is a minimum 100 kilometres (about 60 miles) over two days. It has an optional 60 more k as well for the masochists out there.

So John began training and I bought myself a mountain bike to train with him. Not being very athletic, ever, but keen on encouraging the man and getting myself outside and in better shape, I joined him. Almost before the bike tour I had decided to do the next one which was in 2007. So I continued to train and bought a hybrid bike as the mountain bike isn't suitable for the road. And I did the tour last summer.

Because of where I live, weather is not really the greatest for riding this time of year and we will undoubtedly have a couple more storms before Mother's Day (sometimes after!); but I'm itching to get outside again. I dug out the bike over the weekend and set off today to get myself warmed up. The mountain bike is good to train on for short distances and is wonderful in the woodsy trails. I was out riding for about a half hour and enlisted some locals to take a pic.

In the background is the town of Bedford, where I live, and the historic Bedford Basin where the convoys prepared to head overseas during world War 2. I often bike all the way around and back in the spring and summer as there is a great training road with all kinds of hills (yech). It's a great way to measure my progress as it takes fewer stops to get up those hills each time I bike it.

It's a start...

S.

Cranky Baby

Patience, dear readers. Been a little hectic at work this week and trying to squeeze in a little time with the parental units. I've also been working on a post for publication soon.

I have some really cool listeners, you know? One of them has a little too much time on her hands and has now got me hooked on Cranky Baby. the child will be visiting me at work sometime and will even join me on my training for the Bike Tour (which begins in earnest very soon). Enjoy the video. Here's the link.
S.

Just Be Nice

The ideas that have lighted my way have been kindness, beauty and truth. - Albert Einstein

Last weekend afforded me to observe some medical personnel in my community. I only wish everyone's experiences were as positive as my own.

After going without food and very little to drink for almost 24 hours, I was dehydrated and that made getting blood quite difficult. After scanning and searching for an appropriate vein for at least 10 minutes, the nurse told me she wanted to get another to do the procedure as she didn't want to put me through too much. The other nurse managed to do it on the second try. I was very happy with the first nurse's decision to hand off to someone with more experience.

At the women's hospital I went to after that, the med student participated in my internal exam. He got the speculum in but couldn't see well enough to get the swab where the doctor wanted it from. He stood up and let the doc sit down to do that part of the procedure. The student stood next to me and said he didn't want to put me through too much and rather than poke around looking for something let the doc do it.

The doc had also asked me about when my last pap was. She said if I was due for one she could do it at the same time as her exam rather than me having to go through it again in my family doc's office. Nice.

When talking to my family doc about my health last year, I told her about all the biking I was doing and my frustration with the lack of weight loss I was experiencing. Yeah, I know all about muscle mass etc....and my shape was a little bit different because of it. But all my clothes still fit. I wanted to get into a smaller size. My doc empathized as she was trying to "remodel" as well. A little bit of sharing, on her part, went a long way to making me feel better about myself.

I have blogged about the wonderful care I received when I was first diagnosed and hospitalized. Even the housekeeping staff who made me laugh. I really can't count the number of kindnesses I received. And I haven't yet told you of the staff at the MS clinic.

I read med blogs on a regular basis and am amazed at some of the docs and nurses who are surprised at patients thanking them for their care. To them and others in the field, I say thank you for your care and your compassion.... and for laughing at my jokes.

S.

An Inconvenient Truth

It is difficult to maintain optimism when reality can be so pessimistic for many. I've been referred to (though not directly)as Polyann-ish at times and I'm really not. I'm very lucky, as I have often said, with my MS, and life in general. That being said, I have my dark depressing moments, too, so I can understand that point of view. But focussing on the bad can only bring more bad. It is a self fulfilling prophecy. Think bad things will happen to you and you're more attentive to them when they do.

There was a woman I went to university with who was one of the sweetest people I have ever met. She was kind, empathetic, funny, and always willing to help you with whatever was in her ability to do. She also had the worst luck of anyone I have ever met. If something could go wrong for Liz, it did. She was working really hard to put herslef through school (engineering no less) and in her second year of a 3 year program she became sick and ended up missing a lot of class time. As a result, she had to do a make-up year, so to speak. She buckled down to do just that, though financially it was difficult. Her parents had little extra money, so she was her only source for dollars. At Christmas time in her third year, her father, a travelling salesman who was also deaf, was attacked in a hotel elevator, beaten with a pipe and left for dead. (I had met the man the year before when he was passing through town and came to dinner with Liz one night in the cafeteria of our residence. He was a small, quiet man, who nodded politely at everyone as we raised our voices so he could hear us. The police believe the animals who attacked him had probably approached him from behind,said something to him and not hearing them, he didn't respond.) He ended up in a coma for a short time before finally succumbing to his injuries. As far as I know, in the 20 some years since that happened no one was ever caught for that crime. Liz came back to school again. A couple of months go by and Liz develops some sort of rash that a doctor diagnoses as scabies. She spends a couple of hundred dollars (that she can ill afford) on washing everything she owns and applying whatever ointment the doc prescribes and recovers. A month later it's back. She sees her regular doc (who had been away when the rash initially started) and is told it's not scabies, but some other exzema type illness that will get better on its own. And it did. She was in my room one day when I received a call at the pay phone down the hall. I was out for a couple of minutes and left Liz in my room. When I returned, she said, "I fixed your candle for you. It was going to burn right over the edge". I had been given a candle that came with instructions on how to shape the edges so it would burn down in a specific pattern and I had been patiently shaping it for several hours. There was no way I could tell Liz that she shouldn't have done that. I just thanked her for her attention. Liz eventually graduated with her engineering diploma and though I lost track of her for 20 years or so, I did learn she went on to get her degree and obtain employment as an engineer.

The entire time I knew Liz, even through the darkest days, she maintained a niceness about her, an empathy for any who were going through a rough patch, and an easy laugh and really cute giggle. We all saw her weep at the news of her father, but then buck up after that incident and carry on. We saw her frustrartion at the scabies incident, but again, we observed her carry on. She never once had the attitude of "poor me". She never once said, "Why me". Those of us who knew her all said those things for her, but never to her.

Liz did not ignore the truth of the crap she went through. When told she had scabies, she said she had visited relatives one weekend who had a farm so it was within the realm of possiblities for her to have picked up the little buggers. When asked about her father's hospitalization and subsequent death, she told us she was angry and sad, but she said, I have to do what I can for my mother and little sister now, and that means finishing school. She fixed on the best possible outcome and strove for it.

Liz never focussed on the bad things that happened to her. She always had hope for whatever was going to happen. And that is what I try to do as well (though I have a post bubbling at the surface as to how I seem to attract negative electronic events in my life) with my MS. People who hear me speak about MS at fundraisers or just one on one, know that I tell the inconvenient truth (sorry, Al) that while I look great today and appear to have all my physical and mental faculties, the disability of MS lurks in the background every day of my life. A specific drug may be helping me to achieve what I accomplish, but so do the little (and big) naps and rests I frequently take. So does eating a relatively balanced diet and all the little treats I allow myself (good for the mental health). So does not beating myself up for perceived failures like a divorce or bad relationships, or for forgetting my shopping bags when I go to the grocery store. There are many things I do to maintain my current status. Is putting hope in the mix part of it? Yes, indeed, because I hope for a future without MS. It doesn't appear that it will be in my life time, but I strive for the future anyway.

Most of this post has been fuelled by a recent posting of Lisa's on Brass and Ivory about PR campaigns for MS drugs. I have nothing against PR campaigns in general, or PR companies. I'm in the PR business myself. What I want is transparency. When I speak to groups about my experiences I tell them who I am, who my employer is, and the good and bad of my experiences. It's the truth. And isn't that what we need?

S.

I'm Late! I'm Late!

Meant to do this yesterday but life got in the way...the latest MS Carnival is up! Go check it out. there's a lovely button on the right side of the page that will take you there.

And the title of this post is also a reference to Alice in Wonderland. The Greater Halifax VON are hosting a Mad Hatter Tea Party March 16th at Historic Properties and I volunteered to host the event (my station Kool FM is a sponsor). Actually, I think the VON has a crush on me, they keep having me host their events. Anyway, I was asked if I would mind being Alice. Once I stopped laughing at the idea of me in a blonde wig, I said yes. Actually, I love getting dressed up in costume so I'm really looking forward to this. There will be pictures, I promise.....lol.

S.
Maybe I'll keep the wig if John has a thing for blondes.

A Not So Gentle Reminder

Some interesting things have been happening to me over the past week. It began one week ago with what felt like appendicitis but turned out to be (the docs think) cysts. Turns out I have a load of 'em in me. Good and bad. Good it wasn't life threatening and bad because it wasn't life threatening. You may question my "bad" reasoning, but now it means I'm just waiting for this to strike again. Or not. If the cysts do what they're supposed to do and just shrink on their own, then great. Or they grow some more, twist around and cause intense pain, or burst, and cause intense pain, or cut off a blood vessel, and cause intense pain....not so great. I suffer for a couple of hours, go to emergency to rule out appendicitis, then wait again.

Turns out there's absolutely NOTHING I can do about this state of affairs. Until they become emergent, I let 'em be. There's absolutely NOTHING I can do to prevent these things. And that pisses me off. I WANT to do something.

A friend of mine is going through a gynecological nightmare of her own. There is a history of gyne cancer in her family and she's previously had two procedures to remove pre-cancerous cells of her own. This is a healthy-living person who recently has had abnormal mid cycle bleeding and needs results of her latest pap smear ASAP. The normal turn around time for these tests where we live is two weeks. Right now, the waiting time for results is 6 weeks. 6 bloody weeks. Her doctor scheduled her for an immediate biopsy, he's not waiting for 6 weeks for results, so if any treatment is needed, then she can get started right away. 6 weeks! THAT pisses me off.

If male genitalia are involved or a prostate, do you think it takes 6 weeks to get results?

What research is being done on cysts? Nothing that I could find on the net. Except for polycystic ovary syndrome(PCOS) which is a disorder of the endocrine system. What research is being done on deadly cancers like ovarian, uterine, or cervical? What kind of fundraising is going on for these cancers?

Tuesday evening, I vented to John. I was very discouraged about the whole episode on the weekend, my friend's experience, and just the whole general feeling of helplessness I had. John, sweetheart that he is, suggested retail therapy. That got me out of the slump for a little bit. Until the next day.

Wednesday (yesterday) the skin on my face began to flake off. Red splotchy patches appeared. WTF? I suspect excema or some such thing but, have to wait to see my doc for a diagnosis. It may have just been stress induced from the weekend's events, it could just be my hormones going wonky with perimenopause. I saw someone at the cosmetic counter at the drugstore this afternoon and said I wanted something to cleanse and moisturize my face gently until I got this diagnosed. He (yes, he) was extremely helpful and asking all the right questions about allergies, new product use, new foods, etc. And he sold me some very expensive moisturizer with the caveat that if it didn't work for me within a week they'd take it back (how nice is that?). Plus he gave me some sample sizes of cleansers to try. I am so pleased with his customer service his boss will be hearing about it (I like to inform managers of good service).

The best part is that he gave me a trial canister of...wait for it....good ole H20. Water in a can that you spritz on your face for cleaning. He told me I might think he's crazy, but he swears by this stuff. It has thermal spring water in it, nothing else. I have never heard of water in a spray can. Perfume, body spray, and tanning lotion yes. Anyway, I will begin using the stuff tonight and continue until the doc says nay, or my face completely falls off.

This past week has been eventful, what with discovering I posed "an interesting case" to the gynecologist and her student who saw me Saturday afternoon (which is a post for a later date, believe me) and my face peeling away. Oh, and the water in a can (!). It also reminds me that MS is not always the culprit of anything that goes wrong with my body. I freakin' knew that already, but I guess I needed reminding. Or someone reading this does.

S.

Shocking Discovery

I don't know what it's like for little boys, as their genitalia is quite visible to them from day one, but for little girls, it can be a shocking surprise when they finally discover what "it" looks like. I was 12 when I sat down in front of a mirror to take a look at what the fuss was all about. OMG! I was positively shocked. It was the ugliest thing I had ever seen. My first thoughts about the appearance of my genitalia were very negative. And I didn't look at it again for at least a year. I got over my shock eventually (actually, I'm fine with it's appearance now), and as an adult I try to take good care of that area of my body, so I take a gander at it from time to time. No problem.

But it all came back to me today when a coworker told me about her 7 year old son who saw his father's penis on the weekend. Here's what she heard from the bedroom...

Eeeewwwww...it's so THICK...and HAIRY....."

She didn't know what he was commenting on so when her husband told her that their son came into the bedroom while he was getting changed, she laughed. She soon had a conversation with her son about what he had seen. Of course he had questions....

"Is that what mine will look like when I grow up?"

"Most likely", she said.

"I know why his is like that. It's because he was cut!"(circumcised)

Too funny. It made me think back to what I first thought upon my discovery. It also brought back to me the memory of seeing my grandmother's pubic hair as a child. She and I were sharing a bed and when I got up in the morning the covers were off her and her nightie was hiked up a little bit (she's probably rolling over in her grave right now, thinking that I saw her pubic hair and am now telling the world). I was astonished that her pubic hair was gray. OMG! I was positively shocked. It had never occurred to me that your pubic hair would turn gray along with the hair on your head. I quickly pulled the covers over her in case anyone else came into the room.

I have about 80% gray on my head (that I colour). But I ain't sayin' what's under the clothes.

S.
The pic is "Fun Betty" pubic hair colour. "For the hair down there"