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That is why I love this man..

Me: I am so tired of hurting on all the time.
Andrew: That’s why we need space travel.
Me: Space travel?
Andrew: Yes, so we can go to the Mermaid plant.
Me: There’s a mermaid planet?
Andrew: Yes, that is where your ancestors came from.
Me: So…the Adaptive Mermaid Syndrome?
Andrew: Yes, Aristotelian logic.
Me: Which is?
Andrew: In an infinite universe, where everything is random, whatever can exist does exist. Therefore, if Adaptive Mermaid Syndrome exists, then somewhere there is a planet where mermaids exist and they have figured out how to deal with it. We just have to figure out how to get there.
Me: So, space travel?
Andrew: Exactly.

Unless of course you believe Professor Mandelhoff…

The Bloggess Rocks And Writes A Book!

If you don’t know who Jenny Lawson aka The Bloggess is, you really should.  I have been stalking following her online antics for awhile now.  This is a video she made for her fans about her new book.   Personally I am looking forward to reading it.  If you check out her blog you will find an excerpt. Let me know what you think.

 

 

Sports Solve Everything.

I just to the “UBC – Chronic Pain Needs Assessment” survey, and now I am pissed off.  It is obvious whoever wrote the survery doesn’t get it.   The questions are of the type where you can disagree, partly agree, etc.   I have Ehlers-Danlos syndrome, Lupus and/or Mixed Connective Tissue Disorder, and an opiate intolerance.  These are some of the questions, or rather statements,  they want an opinion on.  I am going to give what I would like to answer, but they just want you to check a box on whether or not you agree.
I worry all the time about whether the pain will end

Actually I know the pain won’t end, so there is no point worrying about that.

I feel like I can’t go on

Well the options are go on or…..and I am not there yet.

It’s terrible and I think it’s never going to end

It isn’t going to end.  There is no “think” about it.

It’s awful and I feel that it overwhelms me

Sometimes, but the choices are put up with it, or……

I feel I can’t stand it any more

How many different ways do you want to state this one? Read the above response.

I become afraid that the pain will get worse

Considering the fact that the pain has increased every year I have lived, I think this one is kind of moot.

I keep thinking of other painful events

Try not to actually.  Just too depressing.

I anxiously want the pain to go away

Wtf? I would like it to go away. Is it causing me anxiety? Not really, I know it isn’t going to so……

I can’t seem to keep it out of my mind

Considering every step I take is painful, that any repetitive movements cause inflammation and pain….I am aware of it, does it keep me from doing some things no.  Is it possible to completely ignor it, no.

I keep thinking about how badly I want the pain to stop

Considering the definition of “chronic” I don’t think this is likely, so not something I usually think about.

There’s nothing I can do to reduce the intensity of the pain

Actually hot baths help, but I haven’t figured out how to live in a bathtub yet.

 I wonder whether something serious might happen

WTF? Chronic pain isn’t serious?  I don’t have to wonder, I am already there.

 

And of course I just love some of the yes and no questions

During your lifetime have you experienced physical, sexual or emotional abuse?        

Somehow I dont’ think sexual abuse had anything to do with a genetic disorder.  I come from a crappy gene pool, and hurt long before the sexual abuse.

 

So after I finished taking the survery I decided to take a look at their resources, and got even more pissed.  I listened to one arrogant, condescending doctor talk about the need for physical activity, because inactivity makes the pain worse you know.  Everybody experiences pain you know, 80 year olds hurt all the time.  They just ignore it.

The videos and resources have lovely titles that imply the pain is all in your head.   You just need to ignore it, reduce your stress, get physically fit.  Sports solve everything.  Tell that to my feet.

I was removed from Phys Ed way back in 8th grade because of injuries caused by the physical activity.  Jumping rope caused my first knee dislocation at 5 years old.  I had operations on the right knee at 6 and 8, on the left at 10 and 12.  I have a leak in the synovial on the left knee which means it goes dry if I am on it too much.  Both feet have nerve damage that results in constant pain.   Then of course there is the hypermobile pubic symphysis.  The ligaments holding my pubic bone together are too lax.  That means it somes causes me to be off balance. Oh yes, physical activity is going to make it all better.

I ride my bike when I can, while wearing a belt that holds my pelvic bones in place.  Can’t ride up hills though, and have to be careful not to twist my knees.  Water feels good, but when you have unstable joints swimming is difficult.  I just enjoy the weightlessness that renders me almost pain free for a time.

 

 

 

 

 

 

 

 

 

 

 

 

Why I am getting a Gardasil Vaccination…

At 8:30 this morning I was getting a colposcopy.   This is something I have to have done several times a year to check for VIN and biospys any new areas that may have appeared.  I was fortunate today, no biopsies were necessary.  I have two areas affected by VIN I near the vaginal entrance, but they have not grown or gotten worse since the last checkup.  We check again in six months.

So far HPV has cost me my cervix and the majority of my minor labia.  I was 24 when they removed my cervix and uterus, 46 when they removed the minor labia.  So, why am I getting a Gardasil vaccination if I am already infected with HPV?

In a previous post I mentioned a Yahoo group I am part of called Gyn-Gals.  Some of the Gyn-Gals occasionally post interesting studies and research taking place all over the world.  We have all been following some research on a possible vaccine in the Netherlands, it is showing promise in clearing the virus, but it will not be available for some time yet.  Some of the information coming in pertains to Gardasil.  Gardasil is not meant to “cure” the HPV virii it protects against, but in some cases it does.  The boost to the immune system is allowing some to fight off the virus.

Andrew and I have discussed this many times over the last year.  It is an expensive drug, around $400, and probably not covered by our extended medical  Today I asked the gynecologist about both Cervarix and Gardasil vaccinations for someone like me.  He recommended I get the Gardasil vaccination.  Although I am almost 49 and past the age ranges usually prescribed the drug, he believes it may be effective in helping me fight the virus.  I think that if it will prevent me from facing further mutilation to my genitals, it is worth the financial cost.  Andrew agrees.

So, Monday morning at 9:30am I go see my family doctor to get the vaccine.  Hopefully I am one of the lucky ones.

 

You mean I could have had a puppy?

The older I get the more quirks I find out about the body I was born with.   I share some of my issues, such as Ehlers-Danlos with the rest of my family, some however are uniquely my own.

When I was 14 I had a tobogganing accident that required an ambulance, a spinal x-ray, and a few days hospital stay.  When they did the x-ray they discovered a fresh crack in a vertebrae (thus the hospital stay), a few healed cracks, and something called spinal bifida occulta affecting my fifth lumbar vertebrae.  This put a halt to my further tobogganing adventures.

At the time the spina bifida occulta was a curiosity.  In the grand scheme of things the fact that I kept dislocating knees, spraining ankles, etcetera was more important.  The spina bifida occulta did cause some interesting issues when I had to have spinal anesthetic a few years ago.  Apparently that is the preferred spot, after the anesthesiologist tried three times he complained he couldn’t get it in.  When I asked where he was trying and explained the problem he got a little pissy.  How the hell was I supposed to know where they put it?  I now know to warn them.  Anyways, it never seemed like a big deal.

What does this have to do with puppies?  I am getting there.

I also have another little spinal defect, something called a “sacral dimple”   Mine is located in the “natal cleft” also known as the top of the crack of your ass.  Some people with sacral dimples have a problem with occasional abscesses, I am one of them.  I have dealt with them every year or two for as long as I can remember.  I was never too concerned about them, just allowed them to run their course and took lots of hot baths.  In the last three months however, I have had two of them.   So I figured it was time to get it checked.   The conversation with the doctor went something like this.

Doc: ” You have a pilonidal cyst in your sacral dimple, by the way, what is the surgical scar from”

Me: ” What surgical scar?  I haven’t had surgery there that I can remember.”

Doc: “Hmmm, interesting.  It looks like a surgical scar.  Anyways, if the cysts keep occuring we are going to have to operate on it.”

Me: “Í’ll ask my mother about the scar, as for surgery I would rather not.  It sounds painful and with all my drug intolerance’s I would rather avoid it.”

So, I went home and sent my mother a text message.  She is currently in Vancouver with my grandmother.

Me: “The doctor says I have a surgical scar on my tailbone.  Weird huh?”

Mom: “That is weird.  Your grandmother is driving me crazy.”

So later I talked to her on the phone and asked her if she remembered anything.  She vaguely remembered something about a cyst or tumour being removed when I was a baby.  Keep in mind that my mother was only 17 at the time, dealing with my 18 month old brother, and a newborn me, in a time when young unwed mothers were frowned on.

So then we get to my doctor’s appointment today.

Me: “So I asked my mother about the scar.  She said they removed a cyst or a tumour from there when I was a baby.”

Doc: “Really? Did you have it when you were born?”

Me: “She can’t remember.  Just that I was very young.”

Doc: “Were you the first child?”

Me: “Nope, second, and she was only 17 when she had me.”

Doc: “I was a second child too.  There are hardly any pictures of me, the first one is the one they remember.  Give me a minute.”

He disappeared for a few minutes.  I was beginning to wonder if he forgot about me and was curled up in a corner reliving childhood trauma.

Doc: “So, I checked your medical records, you had a tail.”

Me: “I what?”

Doc: “You had a tail.  It was just tissue, no bone or anything.  They are rare, and they usually remove them for testing.”

Me: “So they cut off my tail?  I didn’t even get any say?  Why didn’t my mother know?”

Doc: “I dunno, maybe they didn’t explain it clearly.”

Me: “Does this have anything to do with the spina bifida occulta?”

Doc: “Possibley, hard to say.  The tail, spina bifida and sacral dimple are all spinal defects.”

Me: “My body hates me.”

Doc: “No it doesn’t.  You just are one of my more interesting patients.”

So, there you have it.  I had a tail and they cut it off shortly after I was born.  So then of course I had to call my mother and tell her.

Me: “So remember that cyst or tumour they removed?  It was a tail, a vestigial tail.”

Mom: “Really? Wow, I wonder why they never told me?  Hold it, you mean I could have had a puppy?”

Me: “…….”

Mom: “Well that explains why you crawled until you were almost two.”

Me: “I think that had more to do with the hip defect from the Ehlers-Danlos”

Mom: “Well, maybe.  Still that is pretty cool.”

So, I had a tail, my mother wanted a puppy, and both of us got screwed out of it by the medical establishment.  I would show you a picture, but it’s my ass.

 

 

 

 

 

 

I’m really a mermaid

My family is affected by a genetic disorder called Ehlers-Danlos Syndrome, or EDS for short. The part of my body most affected has always been my hips, knees, and feet. When I was younger I had flat, wide feet and age has just made them more so. Unfortunately, as they get wider and flatter, they also hurt. I have often told Andrew that I feel like the little mermaid from the original story, not the Disney version. One day as I was surfing blogs by other people that have EDS I came across an entry where another woman talked about feeling like the little mermaid, and dreading getting out of bed in the morning because it would hurt. I showed the entry to Andrew and this is the conversation that ensued.

Me: See, this woman feels the same way as me. Walking on knives, just like the little mermaid.

Andrew: You don’t hurt as much in water either. Didn’t you say it doesn’t hurt as much when we go to the pool?

Me:. Yes, the water makes me hurt less. Supports my weight more I guess.

Andrew. You know, I don’t think what you have is Ehlers-Danlos at all.

Me: Oh really??? What is it then?

Andrew: You actually have Adaptive Mermaid Syndrome. Your family must have once been mermaids. Now that you are on land your body has trouble adapting.

Me: So, I am actually a mermaid then?

Andrew: Yep, and you have AMS, not EDS.

So there you have it. Once upon a time my family lived in the ocean as mermaids. Apparently I need to get back to my roots…