Bullseye!

The first 4 months after diagnosis, I went in to the MS Clinic every week for my injection. It took me that long to work up the nerve to stick myself with a needle. The staff a the clinic were patient with me and let me come in until I was ready to do it myself.

Then my (now) ex came in to learn. He took to it like a duck to water. So for a couple of years I alternated injecting my thighs,and the ex would inject my butt and arms. When we split I ended up doing my thighs for 4 years.

After the Wookie and I had been dating for a year and a half, I asked him if he'd like to learn how to do it. I had noticed my thigh muscles seemed to be getting harder to inject, probably from scar tissue, and to be honest, I was tiring of doing it. I really wanted to stop. There was no pain, or next to none, from the injection itself, but the psychological part of it was really beginning to get to me. I just didn't want to do it any more. I didn't want to stop taking medication as I've been able to handle it for the most part, but I needed a break.

So the Wookie began giving me my shots. In the butt. Every week. It was like the weight of the world had been lifted from my shoulders. And so it has been for a couple of years now. Until last month. The Wookie was gone on business for one shot in December and two this month. Oh....my....God......

I discovered (again) how much I despised giving the shot to myself. I am still struggling with why I feel this way about a truly "non event". It's a simple thing to do, there's little discomfort and the side effects are quite manageable at this point. But I can't stand doing it.

The Wookie knows this. And when I get teary eyed about it and try to explain and then get frustrated because I don't know why, he just puts his arm around me and says, "I know". And he has explained that the shot once a week is his way of helping me cope. He's taking some of the burden from me, and as long as the needle isn't going into him, he's fine with it.

Again, a demonstration of how lucky I am. But we MSers may be getting a little more luck thrown our way with the announcement this week of an oral medication to treat MS. I know it is a cancer drug used to treat Hairy Cell Leukemia (HCL) and it has had a successful two year Phase 3 trial. The makers of the drug are hoping to have it on the market in 6 months.

I don't know what the recommendations are for this drug or the side effects or how often it has to be taken. I'm looking into that. I won't be going off the Avonex any time soon though. As long as I have the Wookie to give me the shot, I'll stick to what appears to work for me.

But I do look forward to the day when "Drop your drawers!" is a prelude to something a little more romantic.

S.

Let's Talk about Sex

Here's a posting I know will hike up my stats on the visitor counter. Let's talk about sex. Well, I'll go first, then you can comment if you want to.

In Halifax this weekend is a trade show called The Everything to do with Sex Show. I went yesterday and am going back with the Wookie today. This show has been held in Toronto and Montreal for years and this is its first foray into the uncharted waters of the conservative East Coast. Actually, we're not as conservative as some have deemed us, and there are a number of fetish groups in the city.

The main reason for me attending this show is to get information on methods and devices to aid the disabled community. I have addressed this topic as it related to MS a couple of times at forums for and about MS patients.

Most of the vendors at this show are providers of sex toys, costumes, devices etc., like Fantasia and Sexy Girl. There was a Swinger's Club with a booth set up, the Halifax Sexual Health organization was there with info, there were tattoo folks, hair folks, hair removal folks. You name it, they were there. There's even a dungeon set up by the local BDSM (bondage, discipline, sadism, masochism) community. And there are scheduled talks and demonstrations (though no nudity or sex acts are allowed). It's all very interesting, and the psychologist in me finds a lot of the different communities absolutely fascinating.

Anyway, I am pleased to report that my research has paid off. I have discovered a few things that I will be able to pass on to other MS patients.

For most men with MS, the biggest dysfunction seems to be getting an erection. That's why God invented Viagra. It is of great benefit to those who need it and use it. And docs hand it out quite readily.

For women, sensory issues are a biggie. Some of us (me included), have been subject to those horrendous pins and needles for extended periods of time in the genital area. While the first few minutes may be rather pleasant, the ensuing days or weeks of it can be downright torture. I'm pleased to report that a desensitization product, made by Durex (the condom folks), can be used on women. It was made for men to slow down their ejaculation by slightly numbing the penis, but it can be used safely on women as well. I have yet to meet anyone who has tried the product so can't comment on its effectiveness but it's worth a try.

Lack of sensation is another biggie for women and there are many more products (gels and oils) on the market for that problem. Take your pick.

I came across a couple of products that needed to be explained to me, but I think are absolutely brilliant. They are penis "sleeves" of a sort that enable a person to get a much better grip on the penis with their hands. For those of us with arthritis or muscle contracture of the hands these would be ideal. And one of them even has two little loops attached you can put your fingers through for more dexterity. They reminded me of those "Good Grips" kitchen utensils.

There are tons of vibrators on the market, with different shapes and materials. I even found a waterproof glove with a vibrator in it, and it's very much like swimsuit material so easy to clean and care for.

I have talked to a few MS folks over the years whose spasticity is worsened by orgasm, making it a painful event. Massage before sex can help reduce the occurrence of spasm, though not always, and I often suggest that folks try out different positions to see which has the least negative effect. There are a number of swings, slings, and pillows available to adjust position.

If money is tight (and there does seem to be a large markup on these items), improvise with items found around the house. The glove can be made with a simple bath glove found at the dollar store and one of those little "bullet" vibrators (the waterproof kind) may be put in one of the fingers. Pantyhose, upholstery rope or scarves may be used to manipulate limbs to adjust position, and everyone can use their own pillows as support.

I did talk with a couple of people from the BDSM community. They have suggestions for increasing sensation, from simple over the knee spanking to absolute pain (which I won't get into). There are also electrical stimulants that, again, I won't get into, but I see a possible role in their use for some people.

All the men and women I talked to were open and willing to talk about whatever it is they're into. And the main things that were stressed were consensuality, safety, and respect.

So, links to check out:
Bonnie's Bedroom

Fantasia

Sexy Girl

As for BDSM communities, there are groups in every city. Start with Wikipedia and look for an alternative lifestyle paper in your city. The people who lead these groups are interested in educating folks about their community, so questions you may have about how they may help you are welcomed.

Sex is an important part of the human condition. It is as normal a function as breathing. If you have hangups about talking about it, you won't get the answers or help you need. And you certainly must talk with your partner about it. How can they aid your pursuit of happiness if they don't know what's good or bad for you?

OK, Mom, Dad, if you're reading this and you've gotten this far, you're the coolest!

S.

Haggis and MS

Robert Burns was a poet and a lyricist, widely regarded as the national poet of Scotland. January 25th is Robbie Burns' Day.

Haggis is a traditional Scottish dish made from sheep offal with spices and oats and boiled in a sheep's intestine.

If you are of Scottish descent, Robert Burns is a name you easily recognize. And in Nova Scotia, many folks, not just Scots, celebrate the birth of this poet. Today, we had a friend of mine, Todd, come in to work, bringing with him some haggis and talk with the morning show about the tradition. Todd is a co-owner of a small restaurant and pub in Halifax that the Wookie and I frequent, well, frequently; Stayner's Wharf. Todd and his staff get dressed up for every occasion from Hallowe'en to New Year's to Robbie Burns' Day. He runs a tight ship from what I've seen, and his staff are the nicest, sweetest people you could ever meet. In fact, if you were to come visit me, the first place I'd take you to eat would be Stayner's. They will be serving haggis Saturday night with all the pomp and ceremony of days gone by.

Todd has supported my efforts at fund raising for the MS Society by donating to the Walks and the Bike Tours. (Even if he didn't make donations I'd still be patronizing his establishment.)

Another Scottish tradition is MS. So it's not a tradition in the true sense of the word. But it's a connection many of us share with the Scots. They have one of the highest rates of MS in the world. In fact, most references to genetic factors for MS mention the connection to Northern European countries. The British Isles were subject to invasion by a bunch of different people: Scandinavians, Germanic tribes, and even Iberians (the Spaniards) before that, not to mention the Romans. But it appears the concentration of Northern European invaders may be the ones responsible for propagating MS to the world at large. It's not like they did it on purpose or anything like that, that's just the way it happened. The high concentration of Northern European descendants in Scotland (and Canada) may be one reason for the higher incidence of MS in those countries.

Interestingly enough, haggis may have originated in Scandinavia or ancient Rome and been brought to the British Isles by invaders or other travellers. Kind of like bagpipes. They are typically thought of as Scottish, but their origin may be Middle Eastern, perhaps Turkish or Syrian.

Some may argue that haggis is the Scots' revenge for MS. It is an acquired taste, to be sure, taking getting-used-to. Bagpipes are also an acquired taste. And so is MS, to a degree. Some of us can live with it just fine. But those of us who can live with it, should be advocating for those who can't.

S.

The picture is of a "wild haggis" from Wikipedia. Fictional of course.

Wellsphere

I received a generic-type invite to join Wellsphere. So I did. I am in the company of a number of other MSers, like A Short in the Cord's Joan. This may or may not be a good thing as far as readership goes. But it will definitely be a source of info and ideas. The nifty thing is that my blog automatically loads there. So you can find me everywhere.

I want to welcome new readers from Wellsphere. Come on in, I'll put the coffee on.

The Eyes Have It

For all of my adult life I have been getting my eyes checked every two years. Last night I saw my eye doc and he said he hadn't seen me in 3 years....whoa! Don't know how that happened. Anyway, I had a good check up, everything looks fine. I haven't had optic neuritis and there's no sign of it now.

I had the chance to ask Dr. Cruz about some of his equipment. I specifically wanted to know about the magnification of the tools he uses to look at my eyes. It's 10 times magnification but capable of 60 times (just like my microscope). I told him about the world's best Christmas gift ever, and he was excited, too, as he thinks his kids would like it. I also told him I wanted to check out the Wookie's retina and he said as long as the pupil is dilated I should be able to see it with my microscope. Yay!

Several years ago, probably 7 or 8, I had an ocular event that necessitated an extra trip to Dr. Cruz and then to see a specialist the next day at the hospital. Everything was fine in the end; turns out it was the typical flashes and floaters that usually resolve themselves. But he saw me quickly because of the MS. That's when I found out that he did some research on optic neuritis with a couple of the neuros at the MS clinic in Halifax. Cool. So he knows the players in my health care, and he's done some extra study of the issues particular to MS patients. It was just another example of the horseshoe I have so firmly entrenched in my butt.

It's strange, but I never sought out my current family doc (I got a referral to her from another GP when I was living in another province and planning my move back to Halifax 15 years ago), but, boy, was I lucky to get her. And as for Dr. Cruz, I think I just looked him up in the yellow pages when I needed an eye exam. I got lucky, as I later discovered after the MS diagnosis. Even my dentist is very interested in my MS, reading up on stuff related to it.

And all these folks seem to have an excellent sense of humour, so can appreciate my attitude to most situations. Or maybe they're just being polite, laughing at my jokes and agreeing with my observations.

S.

The pics are one of my eyes and one of the Wookie's.

Cold Silver Lining

It has been freakin' cold this week. Colder than usual. Painful cold. Freeze the tears on your cheeks cold. Driving to work yesterday along the Bedford Basin and the Halifax Harbour I was witness to the phenomenon of "sea smoke". Looking at this took some of the bite from the cold away and I thought I should go out this morning to document it. I'm freakin' crazy, but apparently not the only one as I caught 3 other people out taking pics along the drive.

Into the car by 7:30 on a Saturday morning and it's -21 degrees Celsius. Muttering swear words under my breath I wait for the car to warm up before driving. As I drive, my breath comes out and hits the windshield, condensing first then freezing and blocking my view. So I have to pull over and wait for the windshield to warm up a little more.

Finally, I can see again and I'm off to capture what I hope will be some good photos. Click on the photos to get a better look.






My last stop was back in Bedford, right where the Sackville River empties into the Basin, a favourite spot for a number of ducks, seagulls, and other water birds. I've been in and out of the car a few times and each time, my fingers, despite being encased in gloves, freeze. I caught a glimpse of what appears to be a loon or merganser, too far away to tell, but then a large white bird comes into view. One of the swans!


I don't know which swan this is, as we've had a few living in Bedford over the years, including a mating pair. A few years ago the male died and the following spring the female built a nest anyway. She had no mate, so local folks were concerned that the energy she would expend building the nest and laying (infertile)eggs would hasten her own death. Each time she attempted to rebuild the nest, it was dismantled until she finally stopped. She's been around ever since. I check on her during warmer months but on my training rides last summer around the area she normally resides I never saw her. Is this her? I don't know. But I was so pleased to see this creature this morning I knew coming out so early and in such evil cold was worth it.

S.

A Burden Shared is a Burden Halved

For those of you not familiar with the Carnival of MS Bloggers, please check it out (click on the Carnival button to the right or here). Herrad is the only entry this week. And it's a great one.

Many of us worry about how we may become, or have become, burdens on loved ones. It's why some of us paste smiles to our faces, or never say no to requests, or never ask for help. Forgive me for saying this, but that's a stupid way to live (and I'm as guilty as the next person for not saying no sometimes).

Saying to someone "I'm really not feeling great today, go easy on me" or saying "No, I can't bake cookies for the fair this week" or having your children clean up the kitchen after supper are not bad things at all.

Think how you feel when you've helped somebody. Good, right? Well, give others a chance to feel good, too. Ask for help with the chores, the cookies, or whatever. By allowing yourself to be helped, you are essentially helping someone else.

And there's a difference between making an observation and complaining. In Herrad's case, she says that she does not want to burden everyone with the progression of her MS, but I truly feel she is only making observations of her condition, not burdening her readers. As much as we don't like to face reality sometimes, this is Herrad's reality and the reality for countless others. It must be faced.

It's the reason I speak at every opportunity given to me to raise funds for research and support services. Herrad's reality may some day be mine. And if I don't face that reality, who will?