Friday, March 25, 2011

Be a Bull Dog.

That's what my mom says.  You want something?  Go after it.  Don't stop until you're satisfied, even if that means working yourself to the nubs, pushing people's buttons, nagging them, and acting impulsively.  Just sink your teeth in and don't let go.  My mother is incredibly good at getting things done.  Ask my brother (or Brad Burton)--if you're ever in a pinch, and need something out of the ordinary taken care of, call Vicki.  She takes utter delight in getting the difficult/near impossible accomplished.  I hereby announce that, regarding this abdominal pain, I have, indeed, become a Vickiesque bull dog.

A couple of months ago, when I was crying in despair over my plight, Tim said to me "You have to relax.  Let the doctors figure it out.  Your job is to show up for the tests and let them figure it out."  Well, I'm incapable of doing that.  Not only do I have a predilection for life-long learning, but I get some kind of solace in becoming completely obsessed over and absorbed in something, even if my efforts are futile.  I want to know and understand what is happening to my body.  I am also a critical care nurse.  If you know any of those, you know they like to figure things out. 

I have a very large base knowledge of general anatomy and physiology, but I have endeavored, throughout this ordeal, to learn all about my muscles, how they work, how they cause pain, and, basically, what is happening to me.  I have had to get down to the cellular level of how my body works.  I have learned a lot.  I have Googled, joined message boards, read other blogs, and emailed countless "experts" in search for answers of what is wrong with me and what can be done.  I am incapable sitting idly by.  And, you know what?  It's paid off.  Let's take a trip down memory lane (if you've been reading religiously, you can probably skip the next section):

October, 2010:  Abdominal pain begins. Convinced it's just my body getting back to normal after having a baby.

January 2011:  Okay, by this point, my quality of life has been severely diminished.  Finally saw GP for the pain, Gallbladder stones suspected.  Ultrasound and HIDA scan were negative, though, so I was referred to a GI specialist.

February 2011:  While waiting to see the GI specialist, I went to see my sports medicine doctor, Dr. Weidenbener.  He sent me to Kent, who does Visceral Manipulation therapy.  At this point, I was beginning to believe this somehow involved soft tissues.

Mid-February 2011:  Saw Dr. Spier, GI specialist, and it was suspected that I might have exercise-induced ischemic colitis.  I questioned this, given I had no other GI symptoms and I am thoroughly convinced it was pregnancy-related.  How could pregnancy cause ischemic colitis?  Anyway--submitted to a colonoscopy which, though not totally normal, didn't reveal much in terms of my pain.  I did get him to refer me to a pain management specialist, however, but had to wait until March to be seen.

Late February 2011:  I heard, from my friend Pete, about Dr. Kaeser in Chicago.  I went to Chicago to see him and was FINALLY correctly diagnosed with myofascial pain syndrome.

Early March 2011:  Continuing to communicate with Dr. Kaeser twice a week, and looking for chiropractors in Bloomington.  Found some good ones:  Dr. Russel and Dr. Houze.  They (actually, Dr. Russell) took over my care and continued working on my trigger points/diaphragm.  Before that, though, I had some cortisone injections from Dr. S.  Dr. S told me I'll never get rid of this condition.  That was a bad day.  I also had him inject the wrong spots, as I couldn't pinpoint the pain.  Back to the chiros--Dr. Russell figured out that my psoas was a huge problem and pretty much eradicated my back pain.  I can't say enough about Dr. Russell--he is the first to give me actual results.  If you live in the Bloomington area, and you need a chiropractor, go to Bloomington Chiropractic Center.  Okay, free advertising over.

Mid March 2011:  I got slightly better--for three days.  Then the pain returned to its usual level.  Okay, I'm going to start searching for other options.  I want to try more cortisone (in the correct spots), and I want to keep working with Dr. Russell.  We know what the problem is, but what we're doing is not fixing it.  I started reading, every night, message boards created by those with MPS.  I found out that trigger point injections help a lot of people, but the results are temporary.  I started to see some things about robotic therapy mentioned.  I bookmarked those pages and continued with my course:  seeing Dr. Russell and getting the injections.

Late March 2011:  Oh, I love my TENS unit!  I began running in my TENS unit, which makes running bearable.  However, I cannot do that forever.  I continued seeing Dr. Russell, got more injections, and contacted the robot people.  The PT from Michigan who does the robot stuff called me yesterday.

And that brings us to today.  I saw Dr. Russell and Dr. Houze today.  Dr. Houze just chatted with us a bit (that man likes to TALK), as he'll be taking care of me when Dr. Russell is on vacation next week in Oregon.  Then I got ART treatment from Dr. Russell.  He reeeaaallly stretched the abs this time, and I could feel it.  It feels good.  I asked him if he'd ever heard of the robot therapy.  He hadn't.  I explained it to him and that I was thinking of trying it.  You know, at this point, I think Dr. Russell may think I'm crazy.  She runs a 20 with a TENS unit attached.  She's talking about robots now.  But I also think he REALLY wants to help me.  And he does!  He got rid of that horrible back pain.  And I think he could get rid of the rest of it, but it will take a long time.  I told him that the robot could do what he does, but in a constant way and with much more pressure.  He said he'd look up the robo thing.  Maybe I can bring the robo technology to the mid-West.  Anyway--I'll miss Dr. Russell, and it makes me nervous to switch to someone new (Dr. Houze), though I know he's very capable.

So.  Being the bull dog...I decided to get the robotic treatment.  I am incapable of waiting for all these other things to work.  First, I made an appointment in Michigan.  Then, as I was reading more about it, I found the corporate headquarters website in Florida.  On the message boards, everyone talked about "Al."  I didn't know who Al was.  Well, Al is the doctor who invented Therbo (pictured below).  So, can go to Florida and have the doctor who invented the technology work with you?  It said that the tough cases usually go to corporate headquarters.  Automatically assuming I'll qualify as a tough case, I contacted corporate headquarters.  Not to be outdone, I sent an email and then called them immediately.  Al, himself, called me back within a few hours.

 I briefly explained to him my symptoms, and also that I'd already made an appointment in Michigan.  I asked him if he thought I would be okay starting at one of their satellite offices in Michigan, or should I come straight to him.  He asked me a few more questions, and said "I think you need to come here."  "Here" just happens to be in St. Petersburg, Florida.  Though it's a lot warmer than Michigan, it would also require a plane ticket.  I asked him how much the treatment (two 8 hour days) would cost, and it's actually quite reasonable (less than a tri bike!).  If I could find a cheap flight and cheapish lodging, I could do it.  What are savings accounts for?  Well, they're for kids' college and financial emergencies.  But Tim and I don't spend a lot of money.  We spend a bit on racing and racing gear, but we don't take lavish vacations.  We don't have nice cars.  We don't eat out at fancy places.  We don't even use credit cards.  We can do this.  I talked to Al a little while longer and told him that I'd have to talk to my husband and get back to him.

I said to Tim:  "I have to go to St. Petersburg.  Do you want to come and bring Rowan or is it best if you stay home with Rowan?"  We determined that it'd be best for him to stay home--if he went it would mean another plane ticket, more money spent on meals, and it might be hard on Rowan.  Plus, I'm going to be in therapy for 16 hours.  So I called Al back.  I told him I was coming.  It was just a matter of when.  We decided that the sooner, the better.  I'm flying down next Wednesday evening, seeing him (and his PTs) all day Thursday and Friday, and again Saturday, when I'll be trained to use a home unit.  I'm flying home Sunday morning.  As for lodging--Al has a friend, an elderly lady, who rents out little cottages on St. Pete beach.  She also has a suite/apartment that she rents out.  She's letting me stay for $65/night.  The other hotels in the area are at LEAST $500/night...and he knew that, if I had to pay that, I couldn't come.  So he called her (while on the phone with me) and got it arranged.

So what will the robot do?  It will lengthen my muscles.  It will do what Dr. Russell is trying to do, but will do it for 16 hours.  For the first time, I feel the end of this madness is near.  We know what we're dealing with.  Let's bull dog it--with a robot.


  1. You're crazy, but tenacious. I so do hope this works, Wendy. (And I'm so sorry that my sister recently moved from St. Pete to NC). Still keeping you in my htoughts and prayers.