Living with Myofascial Pain Syndrome

Dreamstime stock photo - source

I had a friend remind me last night that it's been a while since I've posted about my health.  (I just looked and my last post was in June of last year - yikes!)  So let me update you.

I went to my last visit with the Osteopathic doctor in Atlanta last August.  The only thing he did on that visit was upset me.  I told him that I did everything he said to do.  I ate gluten free.  I took the gobs of supplements he "prescribed" for me.  And I was still in pain.

His response?  "What pain?"

Um, hello!!  The pain that I've been having for 2 years.  The whole reason that I've traveled 5 hours, 3 different times to see you.  The reason I did $11,000 worth of testing at your office.

So, once again, I re-explained my pain to him.  His response?  "Oh that's just adhesions from your surgery.  There's nothing I can do about that."

At that point I was so mad I couldn't see straight.  So when he told me to keep doing all the same stuff and come back in the winter, I walked out of his office knowing I would not be back.

If a doctor can't remember, between visits, why I've come to see him and nonchalantly waves off a pain that has been majorly affecting my life over the past 2 years, then he doesn't deserve my business.

And for the record, I don't believe it's adhesions.  I believe it's Myofascial Pain Syndrome.  And unlike a lot of doctors (including the guy in Atlanta), I believe MPS is a real, specific condition.  I have done a lot of research on the condition and I find it to have recognizable symptoms that set it apart from other conditions.  Unfortunately there are no cures.  Different therapies have worked for different people.  And some people have had to live with the pain for the rest of their lives.  Not so uplifting, I know.

So who have I been seeing?  Since June I've been going to see a local chiropractor.  I get a massage every other week from her and on the "off" weeks I get a chiropractic adjustment.  She's convinced that she can get me better.  While I know the massages help, I'm still not sure about the adjustments.  What I do like is that, unlike other doctors, she remembers me from week to week and she seems willing to keep trying to figure out what is wrong with me.  She hasn't given up on me like my two physical therapists did.

However, it gets frustrating.  Some days, I feel like I'm starting to feel better and move better and then I try to do something that I haven't been able to do for 2 years.  Something crazy - like hold a baby or sit on the floor for 10 minutes to play with my child.  And then the pain comes back and I realize that I really haven't improved at all.

I might be more pessimistic than usual right now because it's been a bad week for me, pain-wise.  And the worst part is I don't know why.  I think I spend half of my life analyzing everything I've done to see what it was that caused my pain to flare up.  Did I move funny?  Sleep weird the night before?  Try to pick up one too many clothes baskets?  Maybe it was the extra trip I took to Walmart walking around, or the fact that it's 40 degrees colder (or hotter) than normal.

And the truth is...WHO KNOWS???????

I certainly can't figure it out.  What I do know for sure is that it's incredibly frustrating.  I shouldn't have to analyze every movement of every day.  Changes in temperature outside shouldn't affect my muscles like they do.  I shouldn't have to wonder if my side will start feeling like it's on fire halfway through the church service.  I should be able to live my life like a normal 35 year old woman.

But I can't.

It's frustrating to see everyone post on Facebook about the awesome workout that they had and how they lifted a gazillion pounds and did 5000 miles in cycling class.  I love exercising.  It used to be the best way for me to relieve stress.  But I haven't been able to do it in over 2 years.  I should be able to workout and enjoy the feeling of my body getting stronger.

But I can't.

It's frustrating when my children automatically run to pick up things I've dropped because they know I can't bend down well to pick them up.  It's frustrating when I know we are spending hundreds of dollars a month on prescriptions and doctor's visits for something we can't even see or really even diagnose well.

I don't want you to think that it's all bad and that I'm not able to enjoy anything.  I have developed coping mechanisms and, for the most part, have learned my limitations.  I am still able to do things with my kids, just not on the floor and nothing strenuous.  I am still able to have leadership positions within PTA and at my church.  They just have to be administrative positions and not hands-on positions.  I am still able to laugh and enjoy life, just with a more limited set of movements than before.

Living with pain, taking 7 extra pills a day, vising the pain doctor once a month, and guarding my every move have now become a way of life for me.  I pray every day to be healed but if I am not, I will survive.  I don't want to let this thing beat me.

Snowstorm Pax

Last week we had an unusual occurrence around here.

We had 7" of snow.  That's a lot for Tennessee.

There are only a few times in my life that I remember getting that much snow.  About 4 years ago, it snowed the last day of school before Christmas break.  On that day, the sky unleashed buckets of snow and we got 6" in about 2 hours.  Before that there was the blizzard of 1993, where we had 12" of snow (and no power for several days) and the blizzard of 1996, which was about the same, 12".

Other than that, we usually get 2" or less.  Usually less.  Not that the weatherman hasn't called for snow in the past.  We just haven't really gotten the snow that they said might come.  This time it came.

I'm thankful for our school system that believed the weatherman this time (I believed him.  My phone said 100% chance of snow.) and dismissed our kids early on Wed.  Not only that, but they told us the night before that they would be dismissing early, which meant we could all prepare and people could get babysitters if they needed to.

Anyway, school got out at 12 and the snow started about 2:30 or so.  It snowed off and on all night and we ended up with 7" and 2 more days out of school.  But they were a fun two days.  The kids played in the snow at our house and played in the snow at my Mom's house.  They watched TV and played video games.  And we watched several movies as a family - the first two Lord of the Rings movies and the latest Superman movie.

While a few days off are fun, I have to admit that I was ready for them to go back to school this morning.

Because apparently the weather likes to be crazy around here, we will have temperatures in the 50's and 60's this week.  It's likely to snow the week after just because that's how it's been all winter.  Cold and snowy one week, abnormally high temps the next.  It just needs to make up it's mind and become Spring already.

I'll leave you with some pictures of my snowy yard and my snowy kids.

David sledding

Julie measuring the snow.

Disney/Universal 2013 Day 6

Missed one of my Disney trip posts?  Catch up on day 1, day 2, day 3, day 4 and day 5.

Thursday
Day 6 was our Epcot Day.  Pop quiz!  Anyone know what EPCOT stands for?  The answer is at the bottom of the post.

We started off our Epcot day with our favorite ride - Test Track!

We loved it the last time we came and now it is even better.  Disney has updated it with an area that lets you design your own car.  As you go through the ride, you test your car on different factors such as speed, agility, etc.  Then at the end, you find out who's car did the best overall and that person is the winner.  And, of course, you store all that data in your handy-dandy MagicBand, which you scan as you are going onto the ride to load your car data.

Using my awesome Disney know-how, we managed to ride Test Track 3 times without ever having to stand in line.  Fortunately for us, we visited at a time when both the new Fastpass+ and the older Fastpass machines were both in service.  We ran walked really fast to Test Track when the gates opened.  We got on it immediately.  When we were done, we went and got a Fastpass to ride again (Fastpass line = no line).  Then we already had a Fastpass+ reserved so we got to ride it a third time with no wait.  Score!!

There was really fun area at the end of Test Track.  Really it was one big advertisement for General Motors cars, but to the kids, it was a fun place to take futuristic pictures.  You got to pick the background and features such as fireworks in the sky or what was shown on the planet next to the car.  Then you ran and got in place and it took your picture.  The pictures were then emailed to you (with some GM propaganda in there too).  Here are some we engineered together.

We visited several other rides, including Soarin', which we also had a Fastpass+ for.  Then it was on to the World Showcase.

When we came to Disney in 2011, we came to Epcot and started around the countries to the right.  We only made it halfway around before everyone was hot, tired and whiny.  So we left without seeing the rest of the countries.

This time my goal was to go around to the left and see the other half of the countries.

We started in Mexico.  And since you can't go through the World Showcase without some entertainment for the kids, we picked up an Agent P phone on the way.  Did we mention how much the kids fought over that phone the last time we came?  Guess what?  Nothing's changed.  They still fought over that phone.

But the special effects with the phone were great.  You stand in one particular spot and push a button and Doofensmertz pops up out of a pot.  Or guitars on the wall start moving and singing.  Really cool.

Mexico was our favorite, mostly because it was inside and air conditioned.  It seems like every time we go to Epcot, it's exceptionally hot that day.  It was close to 100 the day we went, and that was in Oct!  They need to build some more shade in that place!

It was on to China next, which was beautiful and serene.

 We made it over to Norway to ride Maelstrom (our last Fastpass+ for the day) and we were sorely disappointed.  First of all, we shouldn't have wasted a Fastpass+ on that.  The line wasn't long at all.  And then it seemed like a joke of a ride.  It is touted as a tame roller coaster.  I didn't find it roller coaster-ish at all.  My recommendation is that unless you really want to know about Norse history, you should skip that ride.

Well, once again we made it halfway around and everyone was hot, tired and whiny.  So, like before, we took the boat back across the lagoon and headed back to our hotel.  I guess it's just par for the course for us at Epcot to only see half the countries every visit.  And, once again, we didn't make it to the Illuminations fireworks show.  Oh well, it gives us something to shoot for next time.

EPCOT = Experimental, prototype city of tomorrow

Disney/Universal Day 5

Read all about our recent Disney trip: Day 1, Day 2, Day 3 and Day 4 are available.

Wednesday
I have to admit, Wednesday was the day I was most looking forward to.  What day was that, you ask?  Hollywood Studios day!!  I LOVE DHS (Disney's Hollywood Studios, for all the non-Disney geeks out there).  After missing out on the Jedi academy 2 years before, I was NOT going to let my kids miss out on it this time.

Following our normal Disney touring day protocol, we arrived at the park early.  Like, really early, about an hour before it opened.  We were the first ones in our line.  And seeing as this was our first day at a Disney park for the week, I was pretty nervous about just using our Magicbands to get in.  I had linked our tickets to the band myself using the myDisneyExperience website.  I had my fingers crossed that I did it right and that it would all work (I also had our paper tickets with me, just in case it didn't work).  Luckily, we met some very nice gentlemen working the gate.  We talked to them for almost the whole hour.  And they let us scan our bands a few minutes early so we could be ready to run walk really fast to sign the kids up to be Jedis.

And it worked!!

We were the second family in line to sign the kids up and we got our pick of times.  I had to make sure to work around our Fastpass+ reservations that we already had, but I got them signed up to fight Darth Vader, every young Padawan's dream.

Then we did what all good Disney patrons do while at DHS, we ran to Toy Story Mania, the best ride in all of the Disney parks.  We had to wait in line about 10 minutes but it wasn't too bad.  We also got to ride this again later with a Fastpass+.  I could ride that thing a million times and still love it.

Wearing the new Disney lanyards.

LOVE the Toy Story themed queue.
Makes waiting in line just a little bit more fun.

I had bought myself and kids Disney lanyards the day before, in hopes that we could do pin trading this time.  But, sadly, we didn't see anyone else with them on in DHS or Epcot, so we didn't get to do any pin trading.  Must be a Magic Kingdom thing...

Other fun attractions for the day:
Lights, Motor, Action stunt show - We didn't see that show the last time we were there so this was a first.  The show was awesome! A lot of really cool driving and impressive stunts.  David, especially, really liked it.

Star Tours - We, finally, got to ride the new Star Wars ride.  It was closed for upgrades the last time we were there.  We made up for lost time by riding it three times this trip.  Once with a Fastpass+, once with a regular Fastpass and once just standing in line.  The line went really fast so it wasn't too bad.  During the ride, they pick one rider to be the "the Jedi rebel spy."  David was lucky enough to be chosen the first time we rode and got his picture up on the screen.

Here's my little rebel spy riding his speeder.

And the Jedi princess...

Not looking very princess like, but that's OK.

Sci-Fi Cafe - Several people suggested that we eat lunch at the Sci-Fi Cafe.  We tried to get reservations and, in fact, we had some, but they were for 2 in the afternoon and we really wanted to eat earlier than that.  We decided to risk it and try to get first come, first serve seating.  We showed up at 11 when they opened and got seated pretty quickly.  Unfortunately, the non-reservation seating wasn't in the cool 2 bench cars that face the screen.  It was in the limo that is sideways to the screen.  It made it harder to see the movie clips.  And it was very dark which made it kind of hard to see to eat our food.  Overall, our experience wasn't stellar and I don't think we'll go back there in the future.

Then it was time for the big event - The Jedi Training Academy!!

The Padawans all met to get their robes on and to answer trivia questions about Star Wars.  That part was a little odd.  The trivia questions were given by someone who wasn't a native English speaker.  You could tell this was her first time doing this particular job.  So you have a non-English speaker trying to ask questions with weird Star Wars words in them.  It didn't go over well.  The parents ended up repeating everything she said in more plain English for the kids.

Then it was time to go out on the stage.  Every Padawan got a light saber and learned a little fight routine with it (one they would use later when Darth Vader comes out).

Then it was time to fight the evil Darth Vader.  Both kids did great!  And the professional photographer's pictures were so much better than mine that I splurged and bought some of his pictures.

I just love the tye-dye shirt under the Jedi robe, very mysterious.

David got to be the only one to use the "force push" on the storm troopers.  It worked too!

I love how his little feet are up in the air in that picture.  He's so into the whole experience that he's jumping to "force push" those bad guys back.

Pure joy!!

In the end, they all got diplomas which graduates them from Padawan learners to true Jedi!  The Jedi Training Academy experience was truly wonderful!

We loved, loved, LOVED, our Hollywood Studios touring day!  The weather was perfect.  The rides were perfect.  And we did everything we set out to do.  Two thumbs up for Disney!

Pop quiz: Anyone remember what movie this spaceship is from?

Stay tuned for Day 6!

2 months, Oh my!

Somehow I blinked and 2 months passed with no post from me.  Oops.

Christmas and New Years came and went.  Presents were opened.  Lots of food was eaten.  It was a good year.  I'll try to put up a Christmas post later this week.  Oh, and I still have to finish our Disney trip recap too, sometime.  Better late than never, right?

While you're waiting for those exciting posts, feel free to browse my newest book reviews over at my other site, Read me or Bust.  You can search for a book by title in the search box, browse by genre or just read the latest reviews on the home page.  Happy reading!

Julie's Hernia Surgery

Monday was a hard day for me.
My little girl had to have surgery.

It was a pretty minor surgery but the hardest part was that she was so anxious about it.

About a month ago, I took Julie to the doctor for a sinus infection.  While we were there, the doctor discovered an umbilical hernia.  She had a tiny hole in her muscle right behind her belly button.  When she tightened up her stomach muscles, her belly button would inflate like a little balloon.  Then as she loosened, the doctor would push it back in.  Every baby has that little hole when they are in their mom's belly.  It is supposed to close up shortly before birth and sometimes shortly after birth.  If it doesn't, surgery is required to close it up.

So, has she had this since birth?  We have no way of knowing.  This doctor is the first one to notice it.  It is possible that it just was never big enough to notice before and that as she grew, the hole grew too.  Or it could be that the muscles there were weak and she just pulled it and caused the hole more recently.  Either way, when it was discovered her pediatrician thought it was significant enough to send us to a surgeon.  And the surgeon said she needed to get it fixed.

Even though the hole was very small (the size of her belly button), it was dangerous to do nothing.  That little "inflating like a balloon" that I mentioned earlier was her insides coming out of that hole.  And even though they went back in every time that we were looking at them, it is very common for someone with a hernia to have their insides come out and get stuck.  And if they get stuck, it can cause major damage to the person's intestines.  The surgeon told us the smaller the hole was the more dangerous it was because it was harder for whatever came out to get back in.

In light of all that, we opted for the surgery.  Since it wasn't an emergency (yet), we had some time to pick a date that worked best for us.  I made sure to pick a week that there weren't any big tests at school and we picked Monday morning for the surgery so she could have a full week to heal.

Monday we got up insanely early since we had to be at the hospital at 5:50 AM.  Julie was most concerned about getting an IV and despite the fact that they gave her Versed and numbed her hand with a topical bandage, she still freaked out when they put that IV in.  I really think it was the thought of something in her vein and the anticipation of pain that she was upset about.  The anesthesiologist told us she was already numb when it went in.

They took her back soon after that and a friend of ours from church got to be her anesthesiologist and take good care of her during the surgery.  The actual procedure wasn't long at all, about 20 minutes.  She did great.  As soon as she started waking up, they let us go back to recovery with her.

As you can see, the first thing we did was to give her all her lovies.  She might look peaceful here but this was taken just before the storm unleashed.  She was hysterical and was crying and thrashing all around.  She kept telling us that there were too many wires and to get these wires off of her (imagine that with a LOT more emphasis).  She kept saying "I want to go home," over and over and crying through the whole thing.  We were pretty upset because we couldn't calm her down.  But the nurses didn't even bat an eyelash.  They just said "She's fine.  That's just how kids wake up from anesthesia."  But it was very rough to go through.

She pretty much went beserk until she got moved back into a Same Day Surgery room.  And that room held the magic box with the magical words on the corner - "Disney Channel."  Yes, the TV was a life saver.  We turned on the Disney channel and like a magic wand, she stopped crying and was mesmerized by the TV.  We breathed a sigh of relief and called in our parents who were all in the waiting room.  She even got some cool "Get Well Soon" balloons.

Mesmerized by the TV

After an hour or so there, she was doing so much better.  She drank some apple juice and ate some crackers.  They got her up to walk and that was the first time that she felt any pain.  When she got back in bed, she was in a fair amount of pain.  We got her some pain medicine and waited about 30 minutes to make sure she didn't get sick from it.  Then we got to go home.  It was about noon when we got back here.  Everyone was so tired from emotional stress and from getting up so early.  Tim and Julie got a couple hours of sleep.  I only got about 45 minutes of sleep because I wanted to be sure to be awake when David got home from school.  I knew he was worried about his sister and I needed to reassure him that she was OK.

Since then Julie has done very well.  She's been a good patient and is healing quickly.  She will be out of school for the whole week.  I hope that by the time she goes back next week that she'll be pain free.  She won't be able to do gym class for 6 weeks but I assured her that she would be well enough to jump up and down on Christmas Day.

Thankfully she doesn't have any stitches on the outside.  She has stitches on the inside to close the hole, but they used DermaBond on the outside, which is surgical super glue.  That means she can take a shower ("She's waterproof" is what the surgeon said) and she doesn't have to go get any stitches removed.  The glue is also less likely to leave a scar which is good.

All in all, it was a minor procedure, but it was still emotional and stressful for me and for Tim.  I will be glad when my little girl is back to normal again.  And in case you want to see it, she took a picture of her belly button to send to a friend.  If you don't want to see it, just close the window now.

Disney/Universal 2013 Day 4

Read all about our Disney trip!  Day 1, day 2 and day 3 posts are up.

Tuesday
Tuesday was our "free day" meaning we didn't schedule a park visit for that day.  We had a free day in the middle of the week the last time we came to Disney and it worked out really well. So we decided to do it again.

We slept in on Tuesday (as you have noticed by now, that is one of our favorite things to do).  Then it was back to Downtown Disney for some intense shopping.

We started out at the Disney "Design-a-Tee" store.  That was pretty neat.  There were kiosks all over the store that you use to design your own T-shirt.  You choose the color of the shirt, which design you want on the shirt and what words you want to write.  You submit the design and pay for it, then you go back about 45 minutes later and the shirt is all ready for you.  Julie and I each designed a shirt.  Hers originally had Mickey holding a British flag saying "I love Harry Potter" but when we went to submit that, they wouldn't let her use the phrase "Harry Potter."  The guy said he thought it was copyrighted but I think it was more that it was advertising for their competition.  Anyway, she kept the picture but changed the words to "Disney World 2013."  Not quite as unique but still her.  She ordered it in adult large so she could use it as a night shirt.  That baffled the guy too.  He wanted to change it to a child's large and almost didn't believe us when we said, no, that's really what she wants.  In the long run she got the shirt in the adult large and she has slept in it almost every night since.

We explored the World of Disney store for a while.  There is soooo much to see there in all it's 12 rooms of Disney themed stuff, it takes a while to get through it.  Julie and I each got Mickey earrings and I spent a while looking at the Disney Infinity XBOX game.  That is high on our Christmas list this year.  There was a nice employee who took a lot of time answering my questions about the game.  It looks like a really great game with a lot of playability and tons of possible expansions onto it.  It could keep us busy for a while.

Incidentally, I was surprised that the huge World of Disney store didn't have accessories for the new Magic Bands.  Those were only found in the store at the resort, but I didn't discover that until the day we were leaving.  At that point it was really too late.  The bands were coming off within the hour, so I didn't buy anything.  But if I had known about them earlier in the trip, I definitely would have bought some.  They, obviously, need to have those things available to buy in other places because everyone I saw at the Disney parks had a Magic Band on.

Then we moved onto one of our favorite stores - the Lego store.

As you can tell, I gave Julie the camera while we were at the Lego store.  I knew David just wanted to look for a while and play for a while and that Julie would get bored fast.  So I had the idea to let her use my camera.  She took about 20 pictures of everything.  She had Tim and I pose in different ways and she took lots of pictures from different angles.  She really had a good time and didn't whine or complain once.  So my camera idea was completely brilliant, if I do say so myself.

David was a little sad that he only had money left for one small Lego set.  But it was his choice to spend it all the day before.  He knew the Lego store was on the agenda.  He still had a good time playing with everything and looking at all the built sets behind the glass.  We did buy David a big gray flat Lego board.  We had bought him one the last time we were there and he uses it all the time.  Since they are only available in the store, we decided to get a second one.  I also got him $5 off his set by using my Lego VIP card.  I think it was nice of me to let him use it instead of me, but I'm nice like that sometimes.

In the Lego store.  David has a Minecraft Lego set and
Tim is looking off at some other Legos somewhere.
Yes, the Lego store holds the attention of boys, young and old.

For lunch we ate at T-Rex.  It's owned by the Rainforest Cafe so it has a similar type of decorating but all in dinosaurs.  

There was a little play place that kids could dig up "dinosaur bones" in.  It occupied our kids for the short wait until we were seated.

We got to sit in this cool room that was an ice cave.  The lights kept changing colors so the room would go from blue to red.  It was pretty neat, although it was a little dark which made it hard to see our food...but still worth it for the cool factor.

I convinced David to order the ribs that were on the kids meal.  It was the only non chicken nugget/pizza or hotdog that he ate all week.  And he LOVED them.

Speaking of food...we were very fortunate on this trip.  Once again we had chosen not to sign up for the Disney meal plan, believing that we could buy food for cheaper than the cost of the meal plan.  Technically the meal plan was being offered for "free".  But, as we know, nothing is really free in this world.  When we visited Disney in 2011 we had bought 8-day, no-expiration-date tickets.  We used 4 days on the 2011 trip so we still had days left on those tickets that we were using this time.  In order to get the "free" meal plan, we would have had to buy new Disney tickets, which aren't cheap.  So for us, the meal plan wasn't really free.

But...we did have a bunch of rewards built up on a gift card from when we used to use a Disney Rewards credit card.  I thought we had about $250 but I hadn't really checked.  When we used our gift card to pay the first time, the balance printed on the receipt and it was $400!!  We used that money to pay for our meals on the trip as well as for a lot of the souvenirs we bought and it covered almost all of them.  Besides the food we ate while traveling down there and back, we paid for food in Universal, of course, and for 2 meals at the resort.  And. That. Was. It.  Yay!

After lunch we visited the Disney Christmas store for our obligatory 2013 Mickey ornament.  I also bought Julie an ornament for the tree in her room (since we had bought David something at the Lego store).  Then we rode the bus back to Pop Century.  We all went for a swim that night in the flower pool and the kids played some of the games they had going on - a cake walk kind of game and a big wheel race.  We had dinner at the resort and turned in early.  We had to get our rest for the next day - the day I had been waiting for - Hollywood Studios!

Check out what we did on Day 5.