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"

This is a Test of the Emergency Blogcast System...

...do not adjust your computer screens.....

Overheard at the ER this weekend......

The patient had a headache this morning then while eating supper food started falling out of her mouth. She came in and is presenting with left sided facial paralysis.

We may have to divert. We're short people and we've got two trucks coming in....

I've called Jen and she's on her way in....

16 year old overdose coming in. We'll stabilize her and send her in town....

Did you stub your toe recently or drop something on it? No? How about any history of gout?

Mom, let's see if her fever is any better. It's been two hours since she got (some medicine, couldn't make out the word).

Did we do a pregnancy test?

When's Jen coming in?

The guy in 13 will be going in to (bigger hospital) in the morning. (he was a heart patient)

I spoke to the neurologist and he agrees it's Bell's Palsy. So we'll start you on some prednisone. Your eye isn't completely shut, so that's a good sign.

Jen! Thanks for coming in. Boy, are we swamped.

Okay, we'll have to move her to room 20 for the internal.

You and your husband can take a seat around the corner (laughter). This is my dad! Not my husband.

As you can tell I had a rather eventful weekend. Two ERs, an ultrasound, and CT scan, and no, the appendix is fine, but the stupid cysts around my ovary are not. I was feeling kind of stupid by the time I was in an exam room as the pain was all but gone and thinking I really didn't need to be in the ER any more (but I did have signs of appendicitis). And it was an educating experience. I've learned a little bit more about my body and my family medical history. I've learned that if I don't have anything to eat or drink for twenty hours or so, it's damn near impossible to find a vein in my arms to draw blood. I've learned that we have very compassionate nurses and med students here, that if they don't think they can complete a procedure, they hand it over to someone with more experience so as to diminish any pain or discomfort (thank you thank you thank you). I also learned I'm not pregnant, to which I told my mom, if I was, we'd have to call the Pope.

I will be followed up in 6-8 weeks, but if the pain returns, I am to go straight to emergency again (that's a relief, knowing that I can go and not feel like I'm wasting time and resources on an already burdened system).

There were a few funny moments through all this that I will have to blog about at a future time. I just wanted to let you know regular blogging will resume momentarily.

S.

Diet of Worms (apologies to history buffs)

I have mentioned in passing, findings researchers have made about parasites and MS. I even podcasted about it on Charles' MSBPodcast. So here (as Paul Harvey would say) is the Rest of the Story.

There is something known as the hygiene hypothesis. Basically, immune system related illnesses such as allergies are more prevalent in families with fewer children than in large families. The fewer children in a family, the less opportunity a child has of becoming exposed to infectious agents, and that in turn results in a child's immune system remaining "weak" and the child more susceptible to illness or disease. So more siblings lessens your chances of developing allergies.

There has been a steady rise in incidence in the developed world of allergies since the industrial age. And there has also been a steady rise in the incidence of auto-immune diseases, like MS and Inflammatory Bowel Disease.

The hygiene hypothesis has now been expanded to include bacteria and parasites. And the more siblings you have, the greater your chance of exposure to bacteria and parasites. (Can you see where I'm going with this?)

Apparently exposure to bacteria and/or parasites stimulates development of regulatory T cells.
"To use a rough analogy, an unbridled immune system (without regulatory T cells) has the dynamic of a rowdy, unchaperoned beer party. It is likely to overreact to slight or non-existent insults (analogous to allergic disease) and may even attack members of its own party (analogous to autoimmune disease). The role of the T regulatory cells of the immune system is similar to that of the bouncer, keeping the beer party in check." Great explanation from Wikipedia.

A couple of years ago I was reading reports of the link between parasites and MS. And I also read Carl Zimmer's Book, "Parasite Rex", which talked of the rise of auto-immune disease since the Industrial Age. As we have gotten "cleaner" by improving sanitation and hygiene, we have gotten sicker. You've probably heard all the furor about the overuse of antibiotics and antibiotic soaps. As we kill off all bacteria, both good and bad, with these things, we leave ourselves open to attack by adapted bacteria, super-bugs as it were.

There are studies being conducted using parasites to determine how helpful, if at all, they are to folks with MS. The nifty thing about these little parasites is that it looks like only a handful is needed for a beneficial result. And they don't reproduce while they're in you (they seem to want more romantic locales to do that). So once you get over the gross-out factor, it's not such a bad thing.

Links for the studies:Times OnLine
New Scientist

S.

Slow and Steady

It seems that every week we 're hearing about some new drug, some new study, or some new regimen that is going to change how we deal with MS. It's overwhelming. 10 years ago when I was diagnosed there were only a handful of treatments and I could list them all and tell you how they worked. Currently there are around 30 drugs or treatment regimes being used. And that doesn't include the countless drugs and therapies still in the research process.

So it's no surprise that people will say to me, and probably you, "I thought they had found a treatment" or "I thought they found a cure".

In discussing this with my neuro last week, he suggested not to try to focus on all the research still in the early stage (that's a full time job), but instead focus on what's available. And ignore the press releases about "new treatments possible" based on testing on flatworms or some such thing. The press releases to pay attention to are the ones that say "New treatment for MS now available".

Good advice if you are one to get your hopes up at the slightest provocation.
It takes years for a treatment or drug to reach the population that needs it; years of study, and testing, and development, especially for a disease such as MS. It's not like a bacterial infection that once treated, goes away fairly quickly. It has to be followed for years to determine progression or remission. That's why it seems so slow to us. It IS slow. But slow and steady wins the race.

S.
Picture credit: Photo taken by Erin
Tortoise and Hare by Nancy Schon; Copley Square; Bronze on brick; May 19, 1993

Carnival of MS Bloggers #4

The Carnival is up! The Valentine's edition is posted so click on that gorgeous button on the right and give it a read.

It's another great collection with all sorts of hearts to make you feel musht.

S.