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!

Progress

Exhausted. Sore. Extremely long day. Feeling positive and hopeful.

Thanks Dr. Lavallee for that.  As of today I am a HUGE fan of yours. 

Just got home from Mishawaka and South Bend.  I am so, so glad I went and saw all three doctors.  Will update once I sleep and am feeling human again.

Internet Smiles

This one gets me every time.  I love this little girl just jammin away with her Daddy.

I'm pretty sure Allie and I will be quoting this one for a long time to come. 



Five For Friday 1/14/11

1.  Medical Stuff:

• 3 days of PT
• Great session with Dr. Rosen
• Got measured for new compression stockings (Juzo, not Jobst this time). 
• The high risk pregnancy doc's office called.  I have an appointment January 27th. (For the record, in case you have not read previous posts, I am NOT pregnant).
• Got my testosterone levels back to take to the prolotherapy doc on Tuesday.  My levels were super low.  Hmmm, wonder what that could mean.
• Tried two new tape jobs for neck/rib/shoulder stabilization.

Exhibit A:

Exhibit B:



2.  Saturday my Mom and I went to the Twistars Invitational to watch the GymnasticsDoctor.com Autism Foundation demonstration.  I was so proud of Larry and Stefanie as I watched their foundation in action, and all the good that is coming out of it. 

3.  I ordered these for super cheap.  I have wanted to try them but I didn't want to spend 100 bucks in case I didn't like them.  I've been watching the sales and yesterday I got them for a little under 40 bucks with free shipping.  I never thought about buying a pair until I read about people with EDS and POTS who swear by them.  They are designed to improve posture, strengthen back, butt, stomach, and leg muscles, improve circulation, and reduce joint stress.  All of those cover problems of POTS and/or EDS.  So I thought what the heck, they are worth a try.  Now I can check off goal #36 :)

4.  Home Depot came back to fix our floor.  Grrrr.

5.  Highlight of the week:  MSU fought their way back to beat Wisconsin! Hate is a strong word so I will say I really, really, REALLY dislike Wisconsin basketball; even more so than U of M.  That was a sweet victory, and the Spartans showed a lot of heart that night.
Awesome.

Physical Therapy Week Two

This week I feel I like I finally hit my stride with physical therapy.  I felt like I was an actual athlete again for a moment.  That feeling is a high, let me tell you.

This time around, it is comforting that there is a plan in place.  It is comforting that we actually know what is wrong. 

In my first round of PT from July to October, I would go to each session and we would try so many different things, not understanding why I was getting so sick with standing up exercises, and why it felt like my body just kept breaking down and falling apart no matter what I did.  I was living in a fear-gripped bubble at each session, as I was being tested for MS, ALS, other neuromuscular diseases, nutrition deficiencies, vasculitis, etc (throughout the same time frame of these therapy sessions)...

Looking back, not knowing my true diagnoses was not the only thing holding me back from making progress, but the fear contributed as well.  I didn't know how hard I could push my body, since I had no clue what was happening to it; I was so afraid to make myself worse, since I knew in my heart that there was much more wrong with me than herniated discs...I just didn't know what.  No one knew.

In October, my PT made the decision that it would be best for me to stop therapy until we really knew what was wrong with me.  I remember leaving my last therapy on October 6th feeling so hopeless and deflated.  I felt like no doctor would ever figure me out.  What a difference a few months makes.

As I have learned since November, because POTS and EDS are two rare disorders, not many people know much about them, or have even heard of them for that matter.  Therefore, most of the people treating me are learning right along with me, which is okay with me.  All I ask is that the people on my health care team are willing to learn and change things as needed as we plug along...I love that I feel I have found a physical therapy team that is doing just that...I am being treated like I am a partner in my treatment, just as it should be.  I am thankful I am not being treated as "You are the patient, and I am the expert..."

I finished week two of PT this week.  The first week was mostly trial and error...This second week has still been trial and error, but I have been following more of a concrete plan of attack.  As I mentioned before, I am doing two to three minutes of exercises with one minute of either sitting or laying down rest (depending on how I feel as far as dizziness, and sickness) in between.  I am working through a circuit-like regimen that works various parts of my body, and that alternates with standing, sitting, kneeling, and laying down exercises.  My therapist talked to me yesterday that she worked it out so that I can come early or stay late and work through more exercises.  This makes me so, very happy.  This time around I feel like all of the therapists are really pulling for me.  

Yesterday I stayed late and I made it through sets of rows and squats on the body gym, back stabilization exercises, and sets of using my arms on the recumbent bike.  I was proud of myself yesterday.  I felt strong(er) and I loved the independence I was given in the therapy gym.  For a minute it felt like I was back to being a regular athlete, just doing conditioning. 

I'm also trying out new tape jobs.  Monday, my left shoulder blade was taped along with my first few ribs to give me more stabilization, so that they would not sublux.  The tape helped with stability, and I kept it on until Tuesday night when I realized I was breaking out in hives because of the tape.  Always something, I tell ya.  Thursday we tried a different tape job to help give me more shoulder and neck stability.  This technique also helped.  This time around we used caladryl lotion before I was taped, and we used a different kind of tape.  My PT also told me to take it off before I shower, since I broke out in hives after my shower on Tuesday.  She's thinking the moisture and heat may have caused the reaction.  It's all trial and error, you see. 

There are PT students who have just started their internships at therapy.  Many have asked to talk to me about my disorders and/or observe.  Maybe part of my purpose is to teach people more about these little known disorders?  One student in particular has been following me closely.  She has been reading up on my history and Ehlers Danlos. 

On Wednesday for therapy, I had my soft tissue work session and I was fitted for more sturdy compression stockings.  I was also given a tutorial on how to put on my compression stockings without ripping them, using special gloves.  The student asked if she could observe my session.  As I finished, we were talking and she asked how between my nerve being accidentally removed from my arm when I was a gymnast, and through all the surgeries and therapy I did to regain function, along with what has happened in the past year, how I still come to therapy smiling and positive after all of that?

Her question took me by surprise.  I just shrugged it off and said something like, "I'm not all smiles all the time. Just ask my husband.  And you learn that life goes on."

In the car on the way home, I thought more about what she said.  And I thought about other ways I could have answered her.  Like I've spent years in psych therapy which helps.  I have learned that you gotta look at these things like curve balls rather than life ending tragedies.  That I'm 29, which is way too young to be bitter and angry.  That smiling usually feels better than crying.  That negativity won't help me in recovery. 

That student doesn't know it, but she filled my bucket that day.  She encouraged me to continue working hard towards my goals, and to try and continue to keep positive...I truly feel that positivity contributes to healing.

Thursday Ramblings

Ready for some randomness in no particular order?

This week has been better than last week; both mentally and physically.  Thank the good Lord.

Zac Brown Band has been keeping me company this week while I have been doing my exercises.  It's hard to get down when you are doing squats and toe rises to..."I got my toes in the water a$$ in the sand, not a worry in the world, a cold beer in my hand, life is good today, life is good today..."

Once I get a handle on these disorders, if I never see a new patient packet again, I will be a happy gal...Just finished filling one out that's 35 pages...I think that office may now know more about me than my fam ;)

Am I really no longer a Libra?  That's ridiculous.  I'll always be a Libra...I've been trying to balance my scales my whole life.

Gonna try and start pool therapy next week at either Waverly Intermediate or Hill.  My goal is to do water walking and some water running.  I'm hoping I won't have any problems with blood pooling in my legs since it is an issue in the shower. I'm excited to try though...

I ordered this today.  It has gotten really great reviews and my therapist had talked about wanting to read it.  Dr. Tinkle also recommended it when I was in Cinci.  I was reading the reviews and this one really sold me,

"I have been healthy for most of my life, other than a hip injury while running with my dog, which was diagnosed as bursitis and has never completely healed. After having my son 2 years ago at the age of 34, my body began a process of rapidly "breaking down". I developed severe tendonitis in both wrists, back pain, foot pain ,etc. I was evaluated by many specialists, most of them were overwhelmed with the severity of my individual diagnoses. Not until I was diagnosed as having hypermobility syndrome and under the care of a good rheumatologist and physiotherapist, was I able to start my road to recovery. This book was paramount in my healing process. Learning how posture is very important, as people with HMS tend to rest on their tendons. This book also teaches about the chronic pain syndrome. I would recommend this to anyone who wants to know more about this condition. If you have been diagnosed, you also want to learn as much as possible as this condition is hereditary. May God bless you with knowledge to bring forth healing."
I'm excited to dig in and have my PT read it too.

My brother introduced me to my favorite quote of the week: "This is what life's like, there's gonna' be people smacking you all the time. You better get up and smack back or die" -Tom Izzo


Brad and I watched Obama's speech at the Tuscon Memorial Service Wednesday night and it made me pretty emotional.  Politics aside, I thought it was a touching and classy eulogy/tribute/speech after such a horrendous act of violence.

Kathryn Mahoney is now at the Chicago Rehabilitation Institute.  I found out that all of the MSU head coaches got together yesterday and decided that each team is going to put something together to motivate Kathryn.  The teams will take turns, so each week Kathryn will receive something from a different MSU team.  That's Spartan Unity for you!

I joined 2011 and got Online Banking this week...where has it been all my life? It's pretty sweet.  This is how I felt when we got DVR.  Life changing!

I've been doing really well on goal #2-Flossing each day.  I'll keep plugging along on the other 49.  Brad has been rockin his resolution of finishing house projects.  Last week he put the trim around the front door, put up new light fixtures, and started closet doors.  Such a good hubs.

My big sister turned 32 this week.  Love you Kritt!

Bravo is such a weakness of mine.  I just can't help it.

I felt really proud of myself today.

Today's Happiness Is...

Words of Inspiration

 Warm Lemon Muffins

 Words of Wisdom

 Kiddie Pools Even When You are An Adult

 My Favorite Necklace

Words Of Inspiration

 Massage Pillow

Smart Water-3 Liters to be Exact
  

 A New Kitchen Rug

 Bath & Body Candles

Words Of Inspiration

 Photographs That Make My Heart Smile

 Funky Rain Boots

 The 5 most GORGEOUS Nieces Ever

Fuzzy Purple Slipper Socks

Words of Inspiration

Ordinary Day

My Computer



 Family

 Chick Flicks

Words of Inspiration

 A Heart Rate of 71 When I Stand Up



 A Hubby Who Cooks

The Rare Treat of Breakfast for Dinner

 (so NOT anti-inflammatory, I know, I know)

Pig

Words of Inspiration

Gyno and EDS

Today I spent quite a while talking to my gynecologist.  I know it may be weird to some but I love my gynecologist.  He is in my top three doctors for the most kind, caring doctors I've ever seen (and as you know, I've seen a lot ;)


I made an appointment to see him after I returned from seeing Dr. Tinkle in Cincinnati.  One of Dr. Tinkle's recommendations was to get on a second generation Progesterone birth control to see if it helps regulate my hormones and provides me with better joint stability.

I had told Dr. Tinkle that at the time of my period, it seems I get worse with pain, joint looseness, and POTS symptoms.  He said he hears that a lot, and that it made sense because there can be a definite hormonal influence on EDS (and POTS).  To quote from his book,

"It has been known that there is a hormonal influence on joint laxity.  The female hormones affect the ligaments at the cellular level altering the production of collagen and the cells that support it [Magnusson, 2007; Hansen, 2008].  Females generally are more lax than men which in part is due to the shape and form of the female body, musculature and types of activities in addition to the hormonal influence.  Some observe that their joints seem "looser" or more unstable just before their menstrual flow (periods) [Child, 1989; Friden, 2006].  Research looking into whether or not this monthly "looseness" makes the person more prone to injury at the same time has been contradictory. [Griffen, 2000]

While both female hormones affect collagen, it is more likely that progesterone and its analogues (similar chemical hormones) increase ligamentous laxity.  Medroxyprogesterone, the type of progesterone commonly found in DepoProvera, is a "true" progesterone and can increase joint hypermobility.  Similar progesterone's made from testosterone (the male hormone), such as norethindrone or norgesterol, are thought to have less effect on ligaments.  If one takes an oral contraceptive pill, choosing the combination with either norethindrone or norgesterol may have less influence on joint laxity."

Resources: "Hormonal Aspects of Hypermobility," by Professor Howard Bird, from the Hypermobility Association, www.hypermobility.org

--Dr. Brad Tinkle, from Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Syndrome

So today, I went to my gyno appointment armed with this information, and many other questions about family planning.  My doctor totally agreed with putting me on the pill, if for anything to make sure I do not get pregnant since that would not be good.  He put me back on Loestrin, which I had been on for 5 years up until April of 2010.  In April, I had gone off of the pill to start to try and have a family.  In May and June, a lot of my extreme problems started to happen.  In the back of my mind I always wondered if there could be a link between going off of the pill and my body starting to come "unglued," or if this was just a coincidence?  What's more interesting is that my gyno said Loestrin, the one I had been on, is one of the birth controls that has norethindrone, or a second generation progesterone that was recommended by Dr. Tinkle.  I would so love to be a part of a research study about this. 

My doctor said he wants me to mentally think of going back on the pill as a means to accomplish one goal and one goal only; to not get pregnant, and if other positive outcomes happen from going back on Loestrin than so be it. 

We also talked about pregnancy and EDS and POTS.  My gyno also recognized a lot of the risks that accompany both disorders with pregnancy.  However, he said he would really love for me to talk everything over with a high risk pregnancy doctor before Brad and I make any final decisions.  He is going to set that appointment up for me, which is in Lansing so no traveling!  He said that after we discuss everything, and if we still decide not to have me get pregnant, my gyno, or the high risk doctor can also help us with other options such as surrogacy and the genetics of using my eggs. 

I don't know why, but I find all of this stuff so interesting. I say just give me a huge shot of testosterone and see what happens...Just kidding.  I think. 

Adios Week!

This week was a struggle.  I think I cried more this week than I have in a long time.  I have been pretty quiet on the blogging front, because I have tried to take Thumper's advice of, "If you can't say anything nice, don't say anything at all..."


On Sunday, I knew this week was already going to be tough.  I had gotten used to having Brad around the last two weeks, and I knew I would have to adjust to being on my own again during the day, since he went back to work Monday.  That in itself, got me kind of down. 


Then I had an unexpected conversation that sent me into that downward spiral of fear.  It got me so worked up and the what-if's began.  After that talk, the rest of the week I felt like crap; both physically and emotionally.  It didn't help that this week has been a very pain-filled week for me.  But I know the pain is not all of what caused me to have such a tough week.  A big part of my struggles this week was my attitude.  I feel like I let my CAN DO attitude fall off track this week.  I was doing so well, being so positive, and forging ahead....

And then I let someone take the wind out of my sails.  I take full responsibility for this because I allowed it to happen, but it caused me a lot of freak outs, a lot of tears, a lot of self doubt and self criticism, and a lot of negative Internet surfing...

(It's been a while since my computer has had to be taken away from me). 

Then, as my neck, shoulder, and back pain kept increasing throughout the week, I turned to the Internet to try and find ways to help the pain, or reasons for why it may be happening.  Through this "research" I found myself getting sucked into certain online "support groups" that resulted in me believing that I was either a) headed for a stroke and/or b) that I am going to be in a wheelchair for the rest of my life and nothing will ever help me.


Whoa, that fear is suffocating and debilitating.  It is so not healthy for my mind and it sucks every ounce of hope and faith I have right outta me. 


Last night, the breakdown for the week peaked and the waterworks started to really flow.  I felt like I had held so much of it in all week, and it all started to come out...Things I hadn't ever acknowledged were bugging me....Like, feeling sad because I feel less independent since I am not making my own money right now.  Feeling pissed because I can't go outside and run anymore (when I used to feel like this, I would run, and I would feel better).  Feeling embarrassed because I had to start taking Prozac to help regulate my Autonomic Nervous System three days ago.  Feeling lonely since I am at home most days on my own.  Feeling so scared to get my hopes up about prolotherapy helping me.  Feeling so scared that other treatments are not going to help.  Feeling like what is my life purpose right now?

After that release, I realized, I had to get myself together because this attitude derailment is DEFINITELY not going to help me get any better.  I told myself, Katie, you are stronger than this!

Today I have worked much harder at positive self talk.  I have stayed off the scary Internet sites and have instead read bits and pieces of Love is Letting Go of Fear by Jampolsky. I have reviewed with myself that I am the one in control~of my health, of my attitude, of my faith, of what I read, and who I choose to surround myself with.  I learned a lesson this week that those last two are big pieces of the emotionally healthy puzzle. I must be careful about what I choose to read about POTS and EDS, and it is the positive people who help keep me sane, and help keep me forging ahead; not the negative nellys.

Yes, I hurt, and yes, I get scared.  But dwelling on these facts obviously do NOTHING for me.  Some days are tougher than others but I am a fighter and I will do what I can to get healthier and healthier.  Better days ahead!  Better weeks ahead!  Negative Nelly's, get outta my way!

Health. Faith. Courage. (Thanks Al for the constant reminder around my neck).

 

Five For Friday 1/7/11

Most of my week was medical stuff, so this one could be a tad bit boring...

1.  Medical Stuff: 

Physical therapy Tuesday and Thursday-Recumbent bike; arms only, unweighting arm work, back stabilization on half foam roller, whole body gym for legs with pelvic stabilization ball...We are trying to do the exercises in an interval fashion...2 mins of exercises, 1 min of laying down rest, 2 mins of exercises, 1 min of laying down rest....We are also trying to do exercises with high reps, and very low weight to "create energy in the tissues..."

Saw the pulmonologist for my annual asthma appointment.  Breathing looked good.  My doctor looked up EDS and did not feel it should have any effect on my breathing.  That's a positive!

Mailed my records and my summary to Dr. Lavallee. 

Had blood work for my upcoming appointment about prolotherapy to check my free testosterone and total testosterone. 

Saw Larry and he did some cranial work. 

Went to the gynecologist to talk about birth control and family planning options. 

I weighed in at 120 pounds at the gyno and the asthma doctor; which is a much healthier weight for me than the 112 pounds I weighed in at this summer.  This is a picture from the summer when I weighed 112.  I think I look pretty gross. 

Funny how you try and lose weight all your life and then one day you find yourself trying to gain weight.  Life is crazy.

2.  Watched the Biggest Loser.  Not sure how I feel about the new trainers.  I would have picked Bob and Jillian for sure.  I already have my favorites picked out for the season.

3. Home Depot came to fix our kitchen cabinets we just had done in July.  Hopefully they will stay fixed, so I won't have to keep harassing them. 
  
4.  Was/am proud of my Dad for making some healthy changes this week.  Go Dad!

5. Saturday, we went to my parent's to cheer on the Spartans.  Everything started out great...We were all so excited and happy to watch the bowl game...

.

(Andy really is excited with his Spartan hard hat on if you can't tell)

We tried to stay optimistic as we watched them struggle....

But in the end, the pumped up atmosphere fizzled as we watched them get an old fashioned spanking from Alabama...

Oh well, I'm still proud of the Spartans and the great season they had.  Better luck at a bowl game next year (hopefully).

Still learning...

I have gotten more questions about what exactly Ehlers Danlos is.  While I am still learning, and honestly there are many aspects that are still confusing to me, I found this video helps explain EDS more.  When the video says that EDS can kill, it is referring to type 4; the vascular type.  Luckily, I have been diagnosed as type 2/3.

Prayers

This has been on my mind a lot since last Thursday morning.  I believe in the power of prayer, and am asking for you to keep Kathryn Mahoney in your prayers for a full recovery.  Kathryn was a senior on the MSU Gymnastics team, when tragedy struck last Wednesday.   She broke her C6 vertebrae while vaulting and suffered a severe spinal injury.

She has a long road ahead but she is making progress each day.  Please keep Kathryn and her family in your prayers as she continues to fight like a true Spartan. 

http://www.msuspartans.com/sports/w-gym/spec-rel/123010aaa.html

2010 In a Nutshell

Just for fun...And I even got Brad to play along.

What did you do in 2010 that you’d never done before?

Brad-Rode a jet ski. Went to fish camp.
Katie-Ran 7 miles. Knitted. Made buckeyes.

Did you keep your new year’s resolutions, and will you make more for next year?


Brad-Didn't have one last year, but this year my resolution is to be better with exercise and finish house projects in a timely fashion.
Katie-I accomplished my 2010 goal of going to church regularly again.  You can see my 50 goals for 2011 in another post.

Did anyone you know give birth? 

• Kristen and Jake had Cecilia Jane
• Scott and Amanda had Cora
• Phil and Sarah had Cameron
• Andrea and Tony had Vienne
• Yoon and Todd had Emily
• Jen and Don adopted Louie

Did anyone close to you die? 

Brad & Katie: Thankfully no. 

What countries did you visit?
         
Brad-Canada (fish camp)
Katie-Nada

What would you like to have in 2011 that you lacked in 2010?

Brad-A baby.  Our dead tree in our front yard removed.  A new fridge.
Katie-A baby. My health~toned muscles. My job. A new dishwasher.  A landscaped yard.

What dates from 2010 will remain etched upon your memory, and why?

Months will have to work bc I'm not busting out my calendar...

Brad:
June: Went to Izzo's Lake House
November 16th: Katie's POTS diagnosis in Cleveland
November 18th: Katie's EDS diagnosis
March 27th: MSU played Tennessee in the Final 8 and we were on an airplane from Boston to Detroit.
November: MSU football Big Ten Champs.

Katie:
September 7:  First day of school when I was at the cardiologist almost passing out on the treadmill.
October 19:  Allie came for my birthday
October 20:  Wexford had a spaghetti dinner in my honor. 
October 21:  Trip to the ER for severe head pain.
November 16:  First "D" Day-POTS
November 18th: Second "D" Day-Ehlers Danlos
August-Cecilia and Katy Rose's baptism and BBQ
August-Telling my principal I would be going on medical leave.
December 9: Dr. Tinkle appointment
June: Cecilia's Birth.
March: Montessori Conference in Boston
May:  Allie's graduation in Maryland.
September 10: Andy's Oath of Enlistment
June: Grand Haven trip with Herners and Damas and Jill, Daric, Jameson, and Cami came.
December: A phone conversation I will never forget.

What was your biggest achievement of the year?  

Brad: I taught 13 kids who had no clue how to play basketball, how to play the game.  I taught fifth graders how to write a five paragraph essay. 
Katie:
I learned how to advocate for myself.  I lived out the motto, "If it is to be, it is up to me."  Starting my blog was an achievement, since I have heard from strangers around the country that my story has helped them. 

Did you suffer illness or injury?

Brad:  A golf cart spun out and landed on my leg.  
Katie:  Ummmm...Well, there were these two certain disorders called Ehlers Danlos and POTS that crept into my life...But I still have my GOOD health!

What was the best thing you bought? 

Brad: A laptop.
Katie:  A massage pillow.

Whose behavior made you appalled or depressed? 

Brad: Jersey Shore. All of them.  Drivers who text.   
Katie: Cheaters.  Liars.  Doctors who told me I was just depressed.

Where did most of your money go? 

Brad: Bills and house projects...
Katie:  Ditto~Bills, the house, kitchen cabinets

What did you get really, really, really excited about?

Brad:  Spartan football and basketball.  The thought of starting a family.  Coaching at MSU basketball camp.  Knowing Katie's diagnoses finally.
Katie:  Christmas.  Cecilia's birth.  Every time I got into another specialist.  The peace of mind of knowing my diagnoses. Spending time at Grand Haven.

What song will always remind you of 2010?

Brad: "That stupid song "Hey, Soul Sister" and Ten Thousand Words by the Avett Brothers.
Katie:  Fix You, Let it Be, Pig, Love the Way You Lie, Ordinary Day, I Will Show You Love

Compared to this time last year, are you: a) happier or sadder? b) fatter or thinner? c) richer or poorer?

Brad: a) mixed. b) the same c) poorer in monetary sense, richer in life experience.
Katie: a) mixed. b) thinner c) poorer in the monetary sense but richer in so many other ways.

How did you spend Christmas? 

We spent Christmas Eve In Grass Lake with the Jaskolski's, and we spent Christmas Day in Lansing with the Dama's.

Did you fall in love in 2010?

Brad-I fell further in love.
Katie-I fell more in love with my hubby and with my nieces.
 
What was your favorite TV program?

Brad-Community, Friday Night Lights, How I met Your Mother, and Modern Family
Katie-SYTYCD, Friday Night Lights, Modern Family, The Today Show

Do you hate anyone now that you didn’t hate this time last year?

Brad-Nope
Katie-Nope.

What was the best book you read?

Brad: Beyond Discipline
Katie: Coraggio! Lessons I Learned from My Italian Grandmother Despite Illness, Loss, & Pain

What did you want and get?

Brad-MSU Basketball season tickets.
Katie-U2 tickets, diagnoses, a new Ipod, a new kitchen floor, a better understanding of who I am

What did you want and not get?

Brad-A Baby
Katie-A Baby. An appointment with Dr. Grubb. A stable back and neck.


What was your favorite film of this year?

Brad-Inception
Katie-Eclipse

What did you do on your birthday, and how old were you?  

Brad-I turned 34 and I watched basketball.
Katie-I turned 29 and I went to arthritis swim class, to Grand Traverse Pie Company for lunch with Allie, and Allie and I went to church. 

What one thing would have made your year immeasurably more satisfying?

We're broken records here...
Brad-A Baby
Katie-A baby, my body not falling apart, winning the lottery 

How would you describe your personal fashion concept in 2010?

Brad-Comfy, casual, athletic
Katie-Somewhat trendy, the year of the leggings since my size kept changing, tunics, casual and athletic wear

What kept you sane?

Brad-My Ipod
Katie-Music, Brad, My Mom, my family, constant support, my computer, positive people, laughing, my faith 

What political issue stirred you the most?

Brad-Waiting for Superman
Katie-The BP oil spill

Who did you miss?

Brad: Can't think of anyone in particular
Katie: My siblings far away, old friends, my students

Who was the best new person you met?

Brad-My intern
Katie-Lisa Gigliotti, Theresa's Aunt Mary, Dr. Fortin (he was the doc who finally put the pieces together)

What is a valuable life lesson you learned in 2010: 

Brad:  Never take life for granted.
Katie: Oh there are so many...Never give up.  There are so many selfless, just plain ol' good people.  Change is inevitable.  There are always things in my control.  Courage is the backbone of everything.  Live for today, because things may be different tomorrow.  "Some of God's greatest gifts are unanswered prayers." Things may not always be as they seem.  No matter how bad things seem today, life does go on, and better days are ahead.  I could go on...2010 was a year of learning.