Decisions, Decisions - Piriformis Syndrome

Nothing simple ever happens to Mom.  One side effect has lead to another.  It's called Piriformis Syndrome.  Yup, ANOTHER one of those mysterious conditions.  I love Wikipedia for a quick understanding of this..."Piriformis syndrome is a neuromuscular disorder that occurs when the sciatic nerve is compressed or otherwise irritated by the piriformis muscle causing pain, tingling and numbness in the buttocks and along the path of the sciatic nerve descending down the lower thigh and into the leg."

Basically, it's a pain in the ass (oops...butt).  And leg, and hamstring, and calf, and foot.  It's excruciatingly painful and has really made Mom cry.  She hates crying about pain, but this seems to be different.  This morning, she was making coffee and while the water was boiling, she had to go lie down and stretch the leg THREE TIMES.  She wouldn't even laugh when I stood by her and wagged my tail and acted concerned.  (It wasn't an act...I was concerned.)

Where did it come from?  GUESS!!  Go ahead....GUESS!!

Yup...it came from the Proximal Muscle Weakness caused by the prednisone!!

I don't get it.  How can this happen?  What does it mean for me Mom?

Here's the theory. This proximal muscle weakness (PMW) started sometime in the early summer and crept up all unknowingly.  In the meantime, because Mom is stubborn and loves to walk us, she kept to her routine as much as possible not knowing that she was changing her gait to compensate for the muscle weakness.  Her left foot starting pronating, causing muscle strain, and by the time September rolled around, what she and her doctor thought was just lower back pain turned into a very bad case of Butt Pain (and hamstring and leg, etc...)
Let's fix it!       Turns out it's not so easy to fix because a very difficult choice has to be made.  I can explain it like this:

Squirrel to the left; squirrel to the right.  Which one to go after?  I hope the outcome is the same (eradicating our birdfeeders of these pesky little gray things), but which WAY is better? 

Choice 1:  Mom has to lower the dose of steroids to help resolve the muscle weakness.  (Remember steroids help control inflammation, so she's courting a flare). But, it's possible that the steroids are helping keep the piriformis muscle swelling down a little.

Choice 2:  See a specialist and get an injection into the bursa of the muscle.  What's IN the injection.  Ohhhhhh....just liquid steroids.   

RATS, doesn't that negate the whole "lower the reduce the steroids - to get rid of the muscle weakness -  that led to the change in gait and -  to the strain of the piriformis?" thing? 

What a conundrum.  Let's just sleep on it for awhile.

Proximal Muscle Weakness

What?  This is an unusual side effect if prednisone.  I mentioned it at the bottom of my last blog entry, and it's going to take some explaining.  Not to worry.  I am highly educated and am more than willing to share my overwhelming knowledge with you.  The topic is much too complicated to approach without the support of my colleagues.

According to www.rightdiagnosis.com, proximal muscle weakness is "weakness of the proximal muscles".  Well, alrighty then.  THAT was extremely helpful.  Don't the editors of the website know that you aren't supposed to use the words in the definition.  I don't think that adding "of" and "the" made the definition clear in any way.

Proximal Muscle Weakness (PMW) is insidious in that it comes on slowly and almost without realizing it.  AND, when you have RA, it's really easy to think that you're having a flare rather than a side effect. Mom noticed that she was having trouble getting up from a seated position, climbing stairs and washing her hair (arms overhead).  It affects lesser used muscles that oppose strong muscles.  For example, Mom has strong quads from walking, but her hamstring is weak.  Strong biceps, weak triceps.  Apparently, this is brought on by long-term and high doses of steroids.  Since she can't take any meds for her RA other than prednisone, this presents a dilemma.  Cutting back on the steroids is the best cure for PMW, however, doing that could bring on a serious flare. SIgh...it's always something.

PMW is really tiring.  It adds another layer of fatigue to an already tired condition.  Plus add PT three days a week and KABLAM!  Mom is pooped.  I've always been able to beat her up the stairs (it's the four-legged advantage), but now she uses both bannisters to get up the stairs and it takes ages.  I've even noticed that she surveys the stairs and plots her ascent.  She and Mom Z call those 13 stairs "Mt. Everest".  (I personally think if they grew two more legs, they wouldn't have any problem at all.)

Our days are getting really boring again.  Get up, eat breakfast, kiss Dad goodbye, take a nap, and then we get to go for a walk with Lauren -the cutest dog walker in the world.  Mom is going to let her take us walking three days a week since she can't even do a short walk with us.  When she's alert, Mom works hard on Operation Save Hepsi...sending letter and email, making phone calls, reviewing letters and making long range plans for fundraisers.  Throw in making a nice dinner for all of us and she's done.

Thank goodness there's Phillies games on every night!  There's nothing like curling up with her and Dad and watching the Phillies swing their way into the Playoffs and the World Series!

GO PHILLIES!

(and Go MOM, too)

Prednisone: A Love/Hate Story

A lot of humans read yesterday blog and laughed, and laughed and laughed.  But, really, prednisone is a serious business. Mom has been on steroids since before I came to live with her and Dad.  (That's a good story, too, but needs to wait until after I go get rid of the cat in the window...)

Ok, now that I've taken care of the important business of guarding the house, let's get back to the topic of prednisone.  You'll notice that the words "Love" and "Hate" are used - those are strong words, indicating an elevated level of feeling.  Mom very rarely uses the word "Hate" - it's not in her working vocabulary.  (I on the other hand really hate that cat in the window.  I think it has to do with that whole cat/dog rivalry that's as old as time itself).

      Love is a word that Mom uses frequently.  She loves her mom (Mom Z), and her husband, (my Dad!), Aunt Carolyn, Uncle Ron, Lynn, Katie...ok, she's LOVES the people in her life.  Of course, she adores ME (and Tipsy and Shadow, too - but really..ME).

Steroids tend to bring out those diametrically opposed words - which isn't surprising as one of the primary side-effects is MOOD SWINGS.  Happy/Sad, Pleasant/Angry, Content/Disgruntled - it's like flipping a switch.  This unpleasant and baffling side effect doesn't need a trigger - it just happens.  And, the higher the dose, the worse and more frequent the mood swings.  In fact, a lot of people who take steroids for a long time need to take anti-depressant to cope with this rotten side effect. So, you have to take a pill, to help with the side effects of the first pill(s).

       I could continue writing about these side effects, but let's let pictures and charts do the talking. Although I generally am the featured canine here (it IS my blog) after all, I invited Tipsy to help me.  She's a love bug, so I let her have the LOVE column.

****DISCLAIMER****  This is not a complete list - just the most common ones that effect people who take prednisone for a long time let's say over 6 months or - like Mom - three years and counting.  Side effects can be mild to extreme (like mom again).  The ones listed below seem to the ones that Mom finds to be the most egregious.

A Word About Steroids...

My "Old" Friend Maggie

Two years ago, or maybe more - you know I have no sense of time -  Mom started taking me to the Early Learning Center at University of Delaware.  I went once a week to class and helped teach reading, math and my favorite...agility.  Mom was feeling better then than she is now, some of the medicines were working and she was able to volunteer a few hours per week with PAWS for People (www.pawsforpeople.org).

Mom set up courses with tunnels and jumps and weave poles, and my job was show all the four-year olds how to run the course.  Then, THEY ran the course - leaping over jumps, crawling through the tunnel and learning how to go through the weave poles.  Clever Mom made bandanas for everyone to help stay cool (they were really just scraps from the fabric store with dog paw prints on them, but we all loved wearing them.  Mom brought ice water to dip them in and stay cool.)

The four-year olds were a little slower than me, but I figure that's because I have four legs. We had lots of fun in the sun during those weeks when we played outside and learned coordination, logical thinking, and number sequences.  I usually don't pick favorites, but I sure liked Maggie because she gave great tummy rubs.

We had to stop working at the ELC in the fall of 2010 after Mom had sepsis.  She was really weak from having a heart attack, liver shock and well...just a huge infection.  Plus, she couldn't take any more medicine for RA except steroids.  Nothing.  Sigh....no more ELC, no more reading, no more visiting with little kids.  We were both bummed.  Mom cried about it.


But, imagine how surprised we were to see Maggie, her mom and dad and little brother at Community Days!  She's growing up and is now is First Grade!  Wow...I was happy to see her!

I heard Maggie's Mom and my mom talking.  Maggie really missed us when we left.  She talked and talked about Mousse and Miss Hepsi and all the fun they had when we came to school.  As a matter of fact, Maggie said that "Four-year old school was The Best year of school she'd ever had". 


Thanks Maggie. I hope the next twelve years of school aren't TOO disappointing.  

Community Days...introducing some campaigners

One of the good things about being a dog is that your perception of time is different from humans.  One of the bad things about being a dog is that your perception of time is different from humans.  It seems like Community Days was just yesterday, but according to Mom, I am way behind in this blog. So, today I'm going to post two!


Operation Save Hepsi had our first big fundraiser on Sunday,  September 18.  What a beautiful day!  Sunny, temperature was like perfect and we met lots and lots of people. I am a people magnet.

   

What a great group of people!  They all love my mom and gave it their all ALL day day long.  I'm going to have to find Jane and get a picture of her.  She's very camera shy.  

DId I mention that I was there as the main attraction? 

There were tons of things for sale to help raise money.  Lynn's Peach Jam was a huge hit, Aunt Carolyn's "Honey for Hepsi" sold out, and lots of earring and bracelets.  

No day is complete if one doesn't take time to admire herself.

What was the best part of the day?  Hmmmm...meeting people.  I think we'll start another blog entry for that.  Really, the best part of the day was seeing my mom smile a lot, talk with people, and get $1026 in donations!  Not bad for a nice day!

Here's looking at you, kids.  Thanks for a great day!

Morning Glorious

Mornings are always interesting. Mom wakes up and her first job is assess her condition.  How many joints hurt?  Did she get enough sleep?  Can she stand up or does she need to sit on the edge of the bed for a few minutes to let her feet get ready for the first step? And then, there's the stairs...don't even get her started about the stairs.  They can be a MAJOR obstacle to her well being.  There's two banisters to help out, but some mornings she has to sit on her rear end (really she calls it her butt descent) and slide down to the first floor.  The best thing is that we can impeded her progress by offering kisses, toys and generally showing how much we love having her at our level.  Ok...so that's what I think.  Mom finds the coffee that Dad makes for her to be the "best part of waking up."  Really?  Coffee over vizsla and yellow lab kisses?  Hmmmmm....I'll have to give this some thought. Coffee is about the only thing she eats or drinks that I don't want to eat.  It's blechy.

But, I digress....mom took her trekking poles, treats and loaded us into the car for a morning schlep.  (She schleps, we run, run run).  I don't have a gear for schlepping.  I have two gears  "On" and "Off".  "On" includes  faaaaasssst.

Did I mention that mom brought treats?  She makes most of our treats.  Today she brought "stinky cookies".  She makes them twice a year and freezes them.  They can only be made on days when ALL the windows in the house can be open...the main ingredient is sardines and they (according to the humans in the house) smell vile.  Hence the name "stinky cookies".  But, you can see that we loooooove stinky cookies and come at a run for them.

Phew!  Fortunately, Mom saved some for me.  It took her a minute to treat me because she was laughing at my seed face

All, in all, it was a great morning.  We only walked half the field...it was that kind of a day, but one thing I've noticed about Mom; she would rather be out with us for a schlep that takes an hour to do what she could have done last month in 20 minutes.  She says it's good for her soul; fresh air, sunshine, the company of clowns (that's us), a hawk flying overhead, seeing a fox in the distance, and listening to the crazy honks of the Canadian Geese as they begin they're migration south.  If her soul is fed and her spirit recharged, she can face the day.

Looks like today was successful.  Wet feet, sunshine and laughing.  We only hope that tomorrow morning can be the same.

Clara's Show and Go

How exciting!  Clara's having a Show and Go at her house for members of the Academy of Dog Training and Agility learn about Mom's stem cell transplant.  Very few people at the academy know what Mom's up against 'cos she doesn't talk about it much, so this event is to start educating our group so they can gear up for the next Big Show and Go.

There's nothing I like better than than agility!  Ok, I love steak and those "stinky cookies" that Mom makes; chasing squirrels and rolling in goose poop is really fun too, but paw for paw, agility is MY FAVORITE thing.  I LOVE it...and so does Mom.  We love working together, trying out new moves and learning how to work as a team.  The only problem is that Mom doesn't run at all, now.  When we first started, she was able to run pretty well for short bursts, but this past year, especially since the septic shock in March, she's had more and more trouble keeping up with me on the the course.  But...we still love it and are working on "distance" - that means she sends me away from her to take obstacles and jumps.  This is tricky to learn and REALLY hard for Vizslas to learn because we are velcro dogs.  We like to stick with our humans.

Here's Clara's course!  We had to go through the garden and around the shed!  The garden smelled good.

Clara's courses are always challenging.  I think Clara would be a great agility judge!  She loves watching all us dogs, encouraging our owners, giving tips and designing courses. I think Clara is one of the kindest people I know.  She's patient and kind and she always flops on the floor and rubs my belly for a loooooong time.  Best of all, Clara always smells good...I think she's one big treat.

Lots of friends from the Academy showed up:

Even my good friend, Ellie Mae (Tipsy's daughter) came and showed off her newbie agility skills.  What great weave poles! Check out these fast weave poles!

We had a great day and were happy and tired!  And, we raised at least $600 for Mom's transplant fund.  Wow, Wow, Wow!  Now THAT makes me happy!

Well, This is the Forest of Arden...

...said Rosalind to Touchstone in "As you like it." Touchstone replies, "Ay, now I am in Arden, more fool I."  And WHAT A FOOL I was...a petting fool!!  There were 9,000 humans at Arden Fair, and I must have met hundreds of them!  "Can I pet your dog?" was the most frequently asked question!  Good thing Mom said "Yes" every time!  Here I am getting all the attention from new friends Lindsay, Varsha, Varsha's sister, Aasthna and Gwen. giving me greeeeeeeeaaaaaat pets.  Why are Gwen and Lily just sitting around in the back?  I've got lots of tummy room!

  AHHHHH....

But wait, this was serious business.  Right?  I'm here to help Mom with the launch of Operation Save Hepsi.  We're here to meet people and talk to them about Rheumatoid Arthritis and why Mom needs a stem cell transplant.  We had a tent sent up, brochures, buttons...those were highly desireable since they have MY picture on them.  There were also BIG PICTURES that Mom took on some of her research cruises to show what she used to do before she was sick. Here's Katie Scanlan (Co-Campaign Chair), Alex and Tori showing off our tent and poster.  Notice the bar showing how much money we've gotten is at $0.  That's OK though, we have to start at zero and can only go up from there!

 oops....BRB!

I generally don't like felines of any kind...but this Zoe is my kind of cat.  More pets for Mousse-Mousse.  Ahhhhh......

But seriously, we're here to start the campaign.  We need to raise $100,000 as soon as possible to buy those stem cells.  Let's get going!

First, the Operation Save Hepsi volunteers get their plummage on.                    

Then, Hannah, Alex and Tori stop to give me a final pet <smirk> before heading out to mingle in that crowd of 9,000. They handed out lots and lots of buttons and brochures and sent tons of people over to meet Mom.

I think that was the best part of the day...watching Mom talk to people.  I told you that she was nervous and anxious about the day - that she had ambivilant feelings about "begging".  However, all the people we met were exceedingly kind and encouraging.  Most people were very interested in the actual use of stem cells and how umbilical cord blood was going to be used.  In fact, the question/comment that she feared hearing the most, "You have RA?  But you LOOK so good" was only heard about 20 times.  (I was counting even though I appeared to be paying no attention).  

In fact, people were more interested in the science of the transplant and the injustice of medical insurance decisions than anything else (except meeting me). Some people put cash into out "Maine Moose" bucket, but Hepsi asked them to either come to a fundraiser or better, make a donation online so that they could get the tax deduction.  Most people, to our surprise, weren't that interested in the tax deduction as much as helping saving Mom's life.  People like helping people in need.

There were two people that really need to get my special thanks; Diane and Jeff.  They stopped by the tent early in the morning where they shared their story of DIane's struggle with chronic cancer.  Diane told Hepsi that it's really normal and ok to lie down on the floor and cry your eyes out from time to time.  Really...this is normal and should not be construed as anything but a natural reaction to a chronic, life threatening condition.  Somedays, sometimes it all becomes TOO MUCH and you just have to cry. And that's ok.  Cry, feel bad, and then, when you're done, dry your eyes, pull up your big girl panties and move on.  I don't wear panties at all - this is some kind of human metaphor for "shake it off after you've slid all the way a creek bank and into the creek" kind of thing.  It seems like good advice.  I mean, I love it when Mom lies on the floor to do her exercises....I get to lie there with her and get extra lovin', but when she'd sad, it's different.  Not so many pets from her...in fact, I have to pet her, lick those salty tears and just curl up with her until she's done.  It's normal. Phew! 

Just like it's normal for us to be tired after a big day. I need a nap.

All's well that ends well (today).  

(more shakespeare)

Let the begging begin...

Arden Fair is tomorrow.  It's finally here...our first event to raise awareness for Mom's stem cell transplant! I can't wait to go and meet everyone and give kisses and pets and get treats and look at cool crafts...maybe I'll even get a new collar.  A girl can never have enough jewelry, can she?  I've a pink one to wear tomorrow.  It matches my nose. 


Mom, on the other hand, seems very anxious and worried about the event. Since I am blessed with an excellent (some might even say eidetic memory) I can tell you about her conversation with Katie Scanlan:


Hepsi:  "I'm really having trouble with this fundraising stuff.  I mean, I feel like I'm begging for my life.  I kind of have a problem with that.  It's so....humiliating and degrading.  It's one thing to help others raise money for a cause, but it's an entirely different thing to BE THE CAUSE.  I wish it weren't happening to me."


Katie:  "I don't have ANY problem with begging for your life.  We NEED you.  That's why I started Operation Save Hepsi."

Mousse's thoughts:  What's the problem with begging????  It's normal, it's a natural part of life.  I do it all the time.  The secret is to make meaningful eye contact with a human who something you want. (On this case, it's Aunt Carolyn.  She has Christmas cookies in her hand.  See how well I'm behaving for the treat? (I'm the one that's sitting up in the back.  I have perfected this to increase my chances of getting the treat.  It works too!)

In case no humans are around, there is always a sibling to work on.  Again, here's my secret.  Inch forward, bit by bit, 

look soulful, 

sigh, be submissive, act small and non-threatening

.and ....POUNCE as soon as the head is turned.

So, I don't know what's wrong with begging.  You get what you want by playing the game.

Welcome toThe Operation to Save Hepsi

My name is Mousse. My "mom" and I do everything together. I even help her teach kids.

Until Rheumatoid Arthritis stole her away from teaching.

I - along with my sisters Tipsy and Shadow - would love to get back to the classroom with her, plus do all the other things we love to do: swimming, agility and napping...well...I guess napping's not such a problem.

This site is dedicated to raising money for Hepsi to get an experimental stem cell transplant.

Stem cells are being used successfully to treat many illnesses, and now researchers at Northwestern Univeristy are trying to see how well they would work on people like my mom.

We need your help to raise $100,000 for the collection, processing and shipping of Cord Blood Stem Cells.
I want so much to get back to living with my mom. I hope you can help.

We're just getting started, so please check back for ideas on how you can help. And if you want, you can drop me a note at mousse@savehepsi.org,
If you want to communicate with the humans, try info@savehepsi.org.