Five For Friday 1/28/11

Overall, it has been a better week. I feel like I have been a rehab'n machine, which is good since my health is my job these days.

1.  Medical Stuff:

• Had 2 sessions of PT. Had to wear my new shirt to PT on Wednesday:

• Saw the GI doc at U of M on Tuesday, and was prescribed Domperidone for stomach flares.
• Saw my new PCP on Wednesday.  He was very willing to learn with me.   I think he will be a good fit.
• Saw the high risk pregnancy doctor on Thursday.  I learned quite a bit...Brad and I have a lot to think about.
• Started Florinef and the Testosterone cream. So far so good.  No chest hair yet.
• Did a lot of home rehab exercises including these...

 

 I have such a love-HATE relationship with these superwoman's.
I feel like such a weakling but I gotta keep at it...Plus I'm taking Testosterone :)

2.  My in-laws surprised me on Tuesday and came and took me to dinner at Mitchell's Fish Market (my fave) and to Pottery Barn (Brad already had plans with a college buddy from Illinois).  It was awesome to spend some one-on-one time with them.

3.  The VanHorns came to visit!  Thanks Kelley, Jeffrey, Zack, and Bradley for brightening my Friday, and for the famous VanHorn spaghetti and brownies!

4.  I started reading this:

Dr. Lavallee told me I needed to read it when I was in South Bend.  He said it was an instrumental book in shaping how he views his EDS pain and he highly recommends it.  Dr. Lavallee said since it is out of print, I probably would have a hard time finding it, but I actually found it pretty easily on Amazon.  I will have to do a book review for a separate post once I finish it.  So far it is really interesting, and honestly very scary reading about Dr. Brand's experiences treating patients who can't feel pain.  Very eye opening.

5.  Had a great time hanging out with the Stringham's, Gooley's, and Thies' on Saturday.  It had been way too long.

We won't talk about MSU basketball this week...

We've Got Tonight

This will either make me cool, or really uncool (I don't even think that is a word but oh well) depending on who you are but I cannot tell you how giddy I have been all day since I read this morning that Bob announced he will be touring again starting in March. 

I grew up listening to Bob.  My Dad has always loved him and he passed that love on to me.  I always remember singing to him as we sat around our camp fires at Lake Leelanau.  When Brad and I talk about our "desert island" albums, Bob Seger's Greatest Hits is one of two albums that we both agree on in our all time top ten albums.

I was lucky enough to get to see him the last time he toured in 2006 at the Palace with all of the Jaskolskis.  The showed surpassed all of my expectations and I went into the concert with high expectations.  I fell more in love with Bob and the Silver Bullet Band that night. 

I'm in such suspense of where in Michigan they will play.  And WHEN?!  I know that once the word is out, and tickets go on sale, I will have to act fast!  I just hope and pray it is a day that works out!  In honor of this monumental announcement, I rehabed like a machine to Bob's Greatest Hits today.  Nothing like doing flies, clams, superwomans, and wall tilts to "Against the Wind," "Like a Rock," and "Travelin' Man."

One more thing...I hope Bob wears his sweatbands like last time. 

Not the best quality, but it works. 

"I was living to run and running to live
Never worried about paying or even how much I owed
Moving eight miles a minute for months at a time
Breaking all of the rules that would bend
I began to find myself searching
Searching for shelter again and again..."

Zebras

I have been told I am now a zebra.

Why a zebra?


In medical school, students are taught to diagnose patients based on the condition that’s most likely. This idea goes along with the saying: "When you hear hoof beats, think horses, not zebras." The horses are the likely explanation, and the zebras are less likely. A medical zebra, then, is a person with a rare medical condition, which is often called an orphan disease. 

This is actually the EDS awareness ribbon:

I think this is why I spent months seeing doctors.  Most were thinking horses, rather than zebras...until finally I found myself in Fort Wayne where a doctor realized I was truly a zebra rather than a horse.

With that being said, a fellow EDS'r shared this photo which I absolutely LOVE. 

It says to me that with the proper tools, the zebra can outrun the lion. 

POTS in South Bend

We spent so much time in Dr. Lavallee's office, so we had to race to my third appointment a couple blocks over with Dr. Halleran, a cardio electrophysiologist.  Dr. Lavallee referred me to him for POTS. 

My appointment started with an Echo (which must have been fine because they didn't say anything about it).

Dr. Halleran came in and listened to my history and my symptoms.  He explained a lot about POTS and that he actually does not like the name POTS because this disorder has to do with a lot more than just tachycardia.  He also explained that the Beta Blocker I am on would not have been his first line of treatment.  However, he agreed that since it does seem to be helping me some, it is best for me to continue taking it.  He reiterated the importance of eating a lot of salt and drinking a lot of liquids.  He explained that drinking liquids is not enough, and that the salt/water combination is KEY to helping control symptoms.  

With that, Dr. Halleran explained that people with POTS, have a hard time retaining the salt/water volume and that is why he likes to put his POTS patients on a med called, Florinef.  He prescribed me this medication to help increase my blood volume, and to hopefully also help with my blood vessel constriction.  He wants me to watch for three side effects: high blood pressure, headaches, and low potassium.  He wrote me a lab slip to have my potassium levels tested after a week of taking this medication, to make sure the Florinef is not depleting my potassium levels.

Honestly, I was not totally thrilled with having to start another medication, but if it helps and gives me more function, than it will be definitely worth it.  I plan to start Florinef today, and am praying for no complications or side effects. 

Dr. Halleran reiterated that there is no cure, but the good news is that the symptoms can be treated. He explained that there is still a lot of research to be done on this disorder; and all types of dysautonomia for that matter.  So again, (I hear this a lot these days) treatment is trial and error.  He explained that with POTS, even if I find a treatment that helps, there will still be good days and bad days.  The goal is to have the good days outweigh the bad days. 

Dr. Halleran seems to believe that I will always live with POTS.  I was told at other appts that I may outgrow it so who knows.  Hopefully as modern medicine advances, more and more will be known, which will therefore offer possibly a cure.  One can hope!

Ehlers Danlos in South Bend

After seeing Dr. Cantieri, we headed to South Bend.


My next appointment was with Dr. Lavallee, who is a sports medicine doctor, who also specializes in Ehlers Danlos.  He actually has Ehlers Danlos; the classical type, meaning it affects his skin and he also has the extreme joint hypermobility.  I had no idea what to expect from this appointment, except I was pretty excited to talk to a doctor who actually lives with what I am living with.


When we got to his office, it felt like I was in Larry's office surrounded by pictures of Olympic athletes, with letters of thanks written to Dr. Lavallee for all he had done for them.  I couldn't help but think that this was a great sign.


Dr. Lavallee had already received my summary, and all my records before I came so before he even met me, he knew a lot of what had been going on. 


Before I describe the appointment, I want to say that I am so afraid I am not going to explain my experience in a way that does it justice, but I will try my best....


Dr. Lavallee came in and introduced himself to Brad and I.  He asked about my appointment with Cantieri, and I told him I was scheduled for prolo in my neck and back.  He was really happy that I decided to go this route, which made me feel SO relieved.  At my last EDS appointments I was told to not do prolo in my neck, so when this EDS specialist was making the thumbs up sign at my decision to go ahead with it, a huge weight felt like it was lifted.  Dr. Lavallee explained that surgery is the "end game" and I have not even come close to doing enough to get to the end game.


His view was needles or screws, bolts, and plates?  To him it made sense to do needles first, since the screws, bolts, and plates will always be there as an option...I liked this guy already.


Dr. Lavallee explained that although I had been diagnosed twice with Ehlers Danlos, he likes to prove it to himself.  He had me do the Beighton Scale and agreed that yes, I have the hypermobility type with some mild, mild skin involvement.  As for the skin involvement, he asked if I looked like my parents.  I told him I look like my Dad.  He then asked my ethnicity, so I told him Italian and Irish.  He said he was curious because I have characteristic EDS eyes, because of a flap of skin on each eye that gives me, "an almost Asian look."  Huh. I definitely learn something new at each appointment.


Dr. Lavallee was very in tune with the makeup of my body, and said, "You don't have any problems below the belt do you?"  I told him no, and he said the proportion of my body is off.  My strength is in my lower body which is keeping the EDS from affecting it, but my upper body is close to waif thin (That has NEVER been used to describe me!)  He said I have some intense strengthening to do on my upper body.  He gave me permission to step up therapy and basically condition my upper body like an athlete again.  He put me through various exercises he wants me to be religious about; exercises I could barely do because of the weakness.  He told me these exercises would not hurt me, only help me, and I have a lot of work ahead of me (Dr. Lavallee is also a strength and conditioning coach so he knows his stuff).


We got to talking, and he said, "so this kinda came out of the blue, huh? 


I told him how it had been my goal to run a half marathon before Brad and I started a family, but I was having so many GI problems and problems with back soreness and tightness that I decided to stop running to give my body time to heal before I went back to running... I explained that after I stopped running, everything started to go downhill, and all my EDS and POTS problems started. 


I told him that this obviously made me throw that running goal out the window...


After I said that he just looked at me and said "why?"  Oh man, with that simple "why" I couldn't help the tears that came next.  He joked that he thought he was telling me happy stuff, and I told him, he was the FIRST doctor I had seen that gave me hope that even with EDS I can still accomplish many of my life dreams and goals...


Dr. Lavallee GOT IT.  He got me.  He got everything because he lives with it too, actually worse than I do.


He said when he was going to med school, his doctors kept asking him what he was doing trying to be a doctor, because they said he would be dead from the pain by 30.  He is 43 now and works more hours than most people.  He said he sent a picture to a doctor who told him he'll never be able to weight lift of him bench pressing a huge amount of weight.


Dr. Lavallee is all about proving people wrong, defying the odds, and working towards goals with a lot of hard work...I LOVED him.  He said that he truly believes that my athlete mentality that I have grown up with will be what will help me accomplish goals I set and help ME prove people wrong. 

He told me, he understands that it is my neck instability and the POTS that is keeping me from functioning at a level of being able to live my life the way I want to.  He told me to let him help me with POTS by sending me to doctors to help find better treatments for the POTS (since there is no one size fits all), and between prolotherapy in my neck and a lot of strengthening I have ahead of me, we will work on hopefully relieving a lot of the neck instability.  He did say that if I do end up needing surgeries, he has his favorite doctors and will ensure that I am in the best hands (he only sends his patients to surgeons who have already helped him).

Dr. Lavallee will be my EDS doctor from here on out.  That is not to say that the other specialists were not great, but he was the best match for ME.  Even though he was about the facts and science of EDS, he was also about faith, believing, and that having a positive attitude can make all the difference.  As a sports med doctor, I think he treats EDS as a sport, and for me, that is a reassuring way that I can wrap MY head around it too.

He asked me about pain meds, and I told him I am stubborn about taking pain meds because I don't like how they make me feel.  He told me had some tricks up his sleeve that work for him, because he, too, doesn't like to take them.  He prescribed me a topical pain med that I rub on places I am having pain.  I haven't been able to try it yet since it is still at the compound pharmacy getting made. 

I asked Dr. Lavallee if he was worried about the genetics of EDS when having children since he said he had two boys.  He explained that he was so worried about passing EDS on to his children, and that he felt for a long time that he would not be able to live with himself if he knew he was the reason (if) his children ended up having EDS.  He described his whole journey with his wife of thinking about children, trying to have children, having two boys, and where they are today.  Out of respect for Dr. Lavallee's personal life, I will keep his journey private but I just want to say that it is an amazing and inspiring story, just like I found him to be.  He looked at Brad and I and said, "Your journey will be just as interesting and different, but it will be yours, and it will be how it is supposed to be." 

Dr. Lavallee was amazing; here is a man with EDS who has had over 200 stitches to keep his skin together, many surgeries for his joints, an amputated finger, braced fingers...and he is doing what he loves because of his attitude and (honestly) his pure stubbornness that EDS will not define him. 

My other EDS appointments were about what I can't do.  This appointment was about what I CAN work towards with hard work and determination. Maybe the difference between my experiences is he's a sports med doctor too.  And maybe it's because he just knows because he lives with it everyday too.  I do know this...Dr. Lavallee believes in himself, and he believes in his patients too.

Five For Friday 1/21/11

1.  Medical Stuff:

• 1 PT session this week...my other appts were cancelled so I hit my exercises hard at home the best I could.
• Got my new compression stockings.  They are thick like a sweater! Takes "compression" to a whole new level. 
• Saw Dr. Cantieri for prolotherapy, Dr. Lavallee for EDS, and Dr. Halleran for POTS in Mishawaka/South Bend.
• Was prescribed topical Testosterone and a topical pain med that I had to get made at a compound pharmacy.
• Was prescribed Florinef for POTS.

2.  The Mays came to visit! I always love catching up with Karen, Julia, Hayden, and Adri.

3.  On Saturday I made it through a whole MSU basketball game at Breslin.  I paid for it afterwards but the game was fun while it lasted; especially since we pulled out a win against Northwestern in yet ANOTHER overtime game.

4.  Saw Notre Dame's campus and Touchdown Jesus on the way to Lavallee's office.  My pictures didn't turn out :(  I was sad we had no Regis sightings...and THEN I found out we were there the day Regis announced his retirement.  What a sad day in my life.

5.  Having a sleepover with my Mama tonight since Brad went to Canton to hang out with his high school buddies for the night.  We're excited to listen to Allie and her former teammate Brandi's debut as commentators for the Terps Gymnastics Meet.  You can get the meet and hear her live following this link: http://www.umterps.com/sports/w-gym/md-w-gym-body.html on Terps TV Premium.  Go Terps!

I have a lot of blogging to still catch up on. Gotta get working on that....

Prolotherapy in Mishawaka

Monday afternoon Brad and I headed to Mishawaka, IN for my three doctors appointments that were scheduled for Tuesday.  We made a last minute decision to go Monday for a few reasons...The weather was supposed to be nasty Tuesday morning...I knew that three appointments and a 2 1/2 hour drive home would already kick my behind...And we got a room at the Comfort Inn for 50 bucks. 


We pretended we were there only for pleasure and enjoyed a nice dinner Monday night at Papa Vino's (first time there) and quick trip to Meijers since I forgot socks, which was followed by watching The Bachelor (Brad was oh so thrilled :)

Tuesday morning we headed to my first appointment with Dr. Cantieri.  Dr. Cantieri is an osteopathic doctor who specializes in complex pain problems.  I had emailed him a while back about prolotherapy and Ehlers Danlos, and he emailed back that he had treated about 8 people with EDS and prolotherapy had helped about half of them. 

After hearing in Cinci that I probably would need a C1-C2 fusion to help with my neck instability, I decided I wanted to explore the other more conservative options FIRST before surgery, which included prolotherapy.  At my appointment, Dr. Cantieri spent quite some time answering my many questions, and listening to my concerns and problem areas.  Then he examined me and decided that it would be best to try the prolo from my C2 in my neck down to my thoracic (mid/upper back).  He explained that in a normal person, it would be black and white if the treatments helped within 2 treatments, but in an EDS patient, I would need 4 treatments to really determine if it is helping.

I explained that with procedures, I often become really nervous, and honestly struggle with some trust issues (I'm sure because of my history) and he reassured me he had done thousands of injections.  I had to remember that this is why we had traveled.  Dr. Cantieri is one of the most experienced prolo docs in the country.

I agreed that I really wanted to try it.  He said prolo works best with a strong physical therapy program set in place so I have that going for me...Dr. Cantieri explained that each treatment would be 2 to 3 weeks apart so I will be seeing a lot of Mishawaka in the next couple months. 

Dr. Cantieri had ordered blood work before I came to look at my growth hormone factor and my testosterone levels.  My growth hormone factor was awesome but my testosterone levels were really low.  Because testosterone helps with the healing process that is crucial to prolotherapy's success, he is putting me on a testosterone cream, that I am to rub on a hairless part of my body each day to get my testosterone levels up.  He said, (direct quote), "You are going to have to watch if you start to get fuzzy..."  Oh geez, hopefully I do not sprout a mustache in the meantime...That's the last thing I need ;) 

The only kicker is that insurance does not cover prolo since it is still deemed experimental....but the way I look at it is if it helps, it will be worth every penny and if I can dodge a major surgery that involves the brainstem, again it will definitely be worth the hefty price tag. 

So February 1st, I will be traveling back to Mishawaka for my first treatment.  Dr. Cantieri said it will take a about an hour to do the prolo, and he will send me home with some pain meds since I will definitely be in pain.  No pain, no gain, right?

This is the brochure I was given to explain the process of prolo and how it works. 

http://www.correctivecare.com/prolobrochure.pdf

Honestly, I have a lot of hope that prolo will help, but I still need to realistic that with EDS patients, because there is already an underlying connective tissue disorder, it may not be as effective. But I'm gonna pray hard that I am a person that will benefit and be able to achieve more stability with the prolo treatments and physical therapy working together! Time will tell!