The "What NOT to Do" Conclusion

Well, I do have to say that persistence does pay off.  I may have overreacted a lot bit, but not knowing to me is the WORST.  If I know I have something, then I can start to deal with it, but I do not do well with the waiting game.

I did not get a call yesterday and stressed, and cried, and prayed, and slept fitfully throughout the night.  I felt like I was back to the summer and the fall, waiting, and waiting for answers.  Thankfully, this morning I was called with the answer I was looking for.

Backing up, in November I was diagnosed with EDS, type 2/3 in Fort Wayne.  It was suggested that I have genetic testing done to ensure that I do not have vascular (type 4) EDS.  I had to wait a month to have my blood drawn since it took my insurance time to decide if they would approve the testing to be done.  Apparently the genetic testing is extremely expensive, but if a gene abnormality is found, then family members can be tested very cheaply.  Well, my insurance got back to both the doctor and me and said they would pay 100% of the testing.  So, at the end of December, when I was in Fort Wayne for nerve blocks, I stopped at this doctor's office and also had my blood drawn for the genetic testing.  I was told that it takes a long time to get the results back, so to not worry if I do not hear anything for a while.

Well, that brings me to yesterday's freaked out blog post.  Realizing that it had been 3 months, I decided to call the office and check to see if they knew when my results would be in.  Well, the lady I talked to looked up my chart and told me that the results were in, and I needed to come in for a results appointment, as she told me in a matter of fact way that it was in regards to the type 4 EDS.  As I became increasingly sweaty and nervous, I asked, in my calmest voice, "Okay, when can I come in?"  Thinking it would be soon, she proceeded to tell me that the doctor did not have an opening until April 28th.  

That date made my voice grow increasingly less calm.  I said, "Well, I am from Michigan, and is there any way the results can be read to me over the phone because that is a long time to worry about this?"  She said that they do not usually do this, but she would give the message to the doctor and someone would try and call me back that day.  She said that if the doctor couldn't read them to me over the phone, then they would have to keep me on for the 28th. 

So I waited. And I worried. And I freaked.  And I cried.  And I got irrational and began spouting off panicked thoughts such as... needing to write a will tomorrow, that I'll never be a mom now, wondering if I would have a brain or a heart aneurysm in the next few years...
I am embarrassed to admit this but I even went so far and told Brad that I wanted him to remarry. 

See what no answers do to me?!  See why I see a shrink?! :) As Dr. Rosen would say, my emotional brain definitely overtook my rational brain. 

Anyways, no one ever called.  So that made for a LONG night.  I decided that I would give the office 24 hours before I called again.   

I just so happened to have a Dr. Rosen appointment today so I got up and got ready for that, going through (in my mind) what I wanted to tell him, and what I thought Dr. Rosen would have to say about all of this...I followed my typical morning routine and caught up on all my emails like usual before I left for my appointment.  One of my emails was a forward my Uncle Steve had sent me that read,

Subject: Fatima- 90th anniversary Subject: 90th Anniversary Today begins the 90th Anniversary of the apparition of the Virgin of Fatima:  When you receive this email say a Hail Mary and ask for a special favor. "Hail Mary, full of grace.  The Lord is with thee.  Blessed art thou among women and blessed is the fruit of thy womb, Jesus. Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death, Amen.   (your request) Please do not break the Novena - send it to 12 people, if you can, who you think deserve justice, peace, love, health, prosperity and truth. When you are down to nothing, God is up to something!!

I do not usually "forward" many forwards but for some reason this morning I forwarded this one to 12 people.  I said my Hail Mary, and I am sure you can all guess what I requested and prayed for. 

I am not kidding you~It was not even two seconds after I hit that send button that the doctor called me to give me results.  She said she cancelled my April 28th appointment because she was calling me to tell me that I was negative for type 4 EDS.  Of course I cried and thanked her.  She said she would be sending me the results and asked if I needed anything else.  I told her I would call if I thought of anything but that answer was what I was looking for.  So basically, I am still diagnosed as a type 2/3 EDS'r.  I then called Brad, my parents, and my sister since they had to take turns last night calming me down.  I proceeded to then go see Dr. Rosen, because as you can see I still have a LOT of work to do :)

Oh, and one more thing.  I realize that Brad and my parents are saints.  I definitely don't make it easy on them sometimes. 

What NOT to Do

Don't doctor's offices know that they are not supposed to tell a patient who happens to be the biggest worry wart on the planet that they have their results back for a pretty major test but they can't come in for a results appointment until April 28th? In Indiana?

I usually take things in stride pretty well, but come on! 

I voiced this concern (twice) and was told that she will give the doctor the message and "maybe she will call me and read me the results over the phone today."  If not, she will just keep me on for the 28th.  You better believe if I don't hear anything today, I'll be their best phone pal until I either a) get phone results or b) get a moved up appointment.

If it is to be, it's up to me. If it is to be, it's up to me.  If it is to be, it's up to me...  

I may be overreacting but I need those answers now!  Nothing like staring down your phone willing it to ring.

I'm off to do exercises to my "don't jump off of a ledge" mix at the highest volume it can go...with my cell phone on vibrate in my pocket. 

Ahhhhhhhhhhhhh.

EDS Defined...Again

This is one of the best explanations I have read.  I think EDS is described in more "layman's terms" on this site than most, and describes the various types pretty well.  I think it is a great resource to use to help loved ones better understand EDS and the complications it can cause (including POTS/Dysautonomia).  Just my opinion :)

http://www.cedsa.org/what_is_eds.html

Five For Friday 3/25/11

1.  Medical Stuff:

• Prolotherapy round 3 was Monday.
• 2 Days of Home Rehab.
• 1 Day of PT
• It is official~I will be seeing Dr. Grubb's NP for POTS on April 20th.  I received the packet this week.
• I am loving my new compression stockings.
• Pelvic clocks, glute retraining, scapular exercises, and the recumbent bike are my new BFFs.

2.  The VanHorns surprised me...AGAIN!  Thank you and I love you guys! 

3.  Brad forgot his keys in his friend's car on Saturday.  This wouldn't have been a problem, but he realized it AFTER his friend was already home an hour away.  We decided to jump in the car and go get them instead of putting it off.  Well, the outlet mall just happened to be on the way so of course I convinced Brad that we had to stop.  I only made it through two stores because my heart rate was super high and I started to get sick...but I did have enough time to score this...

My New Therapy Shirt

4.  One thorn from yesterday turned into a rose.  I was at my parent's house when Andy called.  He was given 5 minutes of phone time.  I talked to him for about 15 seconds, and he sounded great...He says he is tired and sore but he is loving it.  He wanted to know if we will all be there for family day.  I can't wait.  My parent's also put up this star on their house to signify Andy's service in the Army.

5.  Now I have TWO awesome new friends from Mishawaka and South Bend who both have EDS and POTS.  What I love is that we are all about getting up and doing something about it instead of becoming the victim.  Zebra Power!



Roses and Thorns Round 2

Rose:  There are a lot of fun things coming up that I am looking forward to.

Thorn:  I have junk in my chest and my Asthma is flaring up.

Rose:  The sun is shining today after quite a few gloomy days.

Thorn:  Since my ribs hurt, my PT did not allow me to do elliptical or treadmill work today.

Rose:  BUT I did the recumbent bike at a high resistance and was soaked afterwards.  Love, love, love feeling strong and being able to release those endorphins!

Rose:  We will hopefully get my brother's address today or tomorrow so we can start flooding him with letters.

Thorn:  I hate not knowing how he is doing. 

Rose:  I am so thankful for our insurance.

Rose:  I met a new friend who also has EDS through this blog.  We were both gymnasts, we both LOVE Dr. Lavallee, and we are both determined to fight hard!  (Hopefully, I can meet you in person soon, Ila).

Rose:  I read a quote after therapy that I'm adding to my collection... Stephen Hawking who has ALS has said, "However bad life may seem, there is always something you can do, and succeed at. While there's life, there is hope."

Rose:  My Dad has lost 30 pounds.  I am proud of him.

Rose:  It's the hubs birthday.  I love birthdays!

Rose:  I wore my new compression stocking today and they have no holes (yet) and they fit great.

Thorn:  I am realizing through therapy that I have developed a lot of bad habits over the years as to how I use my body to move which must be undone.  Pelvic clocks are HARD.  My thoracic wants to do all the work!

Rose:  Knowledge is power and it's possible to re-train myself if I work at it.

Rose: We are down to single digits for the Seger concert countdown.  9!

Thorn:  I miss Wexford. 

Thorn:  It's a scary time in Michigan right now to be a teacher.

Rose:  Allie introduced me to Chobani greek yogurt this week and I fell in love.  Plus it has a lot of protein so it keeps me full longer.

Rose:  I got my Dr. Grubb/Bev info in the mail and the patient info form is only two pages! You don't know how excited that makes me.  To make it better, they even sent me Mapquest directions.  Ahh, it's the little things...

You Can be President Now!

Happy Birthday to the love of my life, Brad!  If there was a trophy for "husband of the year," you would win it without a doubt!  I love you more everyday and thank my lucky stars that I found you to share my life with! You mean the world to me and I love you with all of my heart!

(I won't reveal your age but the title may give it away :) 


"The most wonderful of all things in life is the discovery of another human being with whom one's relationship has a growing depth, beauty and joy as the years increase. This inner progressiveness of love between two human beings is a most marvelous thing; it cannot be found by looking for it or by passionately wishing for it. It is a sort of divine accident, and the most wonderful of all things in life."~Walpole

"Pain is Weakness Leaving the Body" ~Sobal

Well, I made it through my third prolotherapy round.  Brad is busy getting ready for conferences this week, so my Dad took me this time.  I had no idea what to expect with my Dad taking me since every time I have tried to show him the pictures from round one and two, he couldn't look.  I'm not sure if this had to do with being queasy at the sight of all those shots, or if it had to do with one of his babies going through something painful, or both...

We took off yesterday morning for Mishawaka and on the way, we prepared for the upcoming BOB concert and listened to Seger.  We also listened to Zac Brown Band, and my Dad educated me that "vaya con dios" means "Go with God," as he sang it on the top of his lungs  a lot tad bit off key to the song "Toes."

When we got to the office, they took me right back to take my vitals.  My blood pressure was high but my resting heart rate was fine.  I'll never figure out my crazy body.  I have to eat so much darn salt to RAISE my blood pressure since it's usually so low, and I hadn't even eaten any extra salt that day.  Hmmm?  Maybe nerves, pain, or the combination? 

Then I saw Dr. Cantieri.  I explained that I have still been able to stay out of my collar most of the time, but that my ribs have been freaking me out.  He felt my ribs and then put me through various exercises.  He realized with these exercises that my "firing" patterns were not working right, which could definitely be contributing to this pain.  He told me that if I do not get these under control, I will just be chasing pain, and prolo will not be as effective.  He then wrote this to my PT,

"Katie can not perform normal scapular stabilization, pelvic clocks, or glute firing in the proper sequences.  All of these MUST be addressed before her strengthening."

Who knew?  It kind of makes me frustrated because I would have been doing exercises for these things all along if I just knew...but now I do, and I will work overtime trying to get my butt to "fire" correctly.  Before he started the injections, he explained that he does not want me back for four weeks because he wants to give me a solid month to improve these areas, and he wants to see definite improvements when I return.  The challenge is on!

Then it was time for injections.  Like usual, he mapped out where to inject based on my pain patterns.  For the first time, I started on my back since Dr. Cantieri decided to inject the front of my ribs first. I was surprised and said, "This seems awfully bony....So I take it you can pretty much prolo anywhere?" and he replied with "anywhere there's a tendon or a ligament."  Then I rolled over and he went to work on my neck and back.  The good news is I had less spots to prolo on my neck this time...but I made up for it with more injections in the rib area and lower back. 

Usually Brad is there and he counts the injections and takes the pictures.  I felt fortunate that my Dad was able to go back with me without passing out so I didn't press my luck and ask him to count.  All I know is I had somewhere around 60ish injections.  My Dad DID take some pictures, but most have Dr. Cantieri in them, so I'm not going to post these, but I will post the ones of my injection spots.  Dr. Cantieri and my Dad actually talked fishing while the shots were happening so I think my Dad got over many of his hangups.  When I asked my Dad what he thought, he made a typical Dad comment of, "I don't know what the big deal is.  It didn't hurt me a bit."  I would have whacked him if I could.

When I was done, I slowly made my way off of the table and got dressed.  I made my next appointment for April 18th, asked for Tylenol, paid, the bill, and we were off.  I made it through the car ride alright (I've learned to surround myself with pillows in the back seat and it helps), and followed my post injection routine when I got home of eating eggs and toast for dinner, laying on my heating pad and pillow fort, throwing up most of the night (I think it's my body's way of telling me it's had enough), and trying my best to sleep. 

Like always, I am now just praying hard that I will experience a lot of benefits from the injections.  "Vaya con dios."  Is that even the appropriate context?

Now it's time to hit the butt, scapula, and pelvic exercises hard!  I am liking that this is something that is in my control! Watch out world, it's time to get them firing!

 Pops looking thrilled :)

Before shots

 Ribs in front

 The "map"

 Notice the line along the lower ribs~The area I have been fighting with the last couple weeks

 Finished!

 Before bed

 And again

 After shots

When I realized Brad was taking my picture

Five For Friday 3/18/11

1.  Medical Stuff:

• 2 Days of PT-Did regular circuit strengthening.  My PT also put new foot lifts in my shoes to give me better support. 
• 2 Days of Home Rehab.
• I got into Dr. Grubb's Nurse Practitioner!  I had sent my info into their office in December and they called me Tuesday to schedule an appointment.  My appointment is in Toledo on April 20th, to get another expert's opinion on POTS and my treatment.  It takes a year or more to get into Dr. Grubb himself so I jumped at the chance to see the NP since I was told they work very closely together.  I was also told to expect at least 2 hours for my appointment because she will go over EVERYTHING.  At a couple of my EDS appointments in the past year, I was told that Dr. Grubb probably has the best understanding about how POTS plays into EDS so that is promising to me.
• My ribs hurt!  It's been pretty frustrating.  I go back Monday to get my third round of prolotherapy (I cannot believe it's already been 3 weeks!) so I will definitely be bringing up my ribs because they are worrying me!
• I had to go to Sparrow Medical Supply to get a new pair of compression stockings since one of my stockings ripped in half when I was taking it off.  Oops.

RIP my first pair of compression stockings.  You were good to me.

2.  Tuesday was an emotional one.  In the morning, I emailed my principal to let her know that after discussing things with my doctors and my therapists, that it was just not realistic for me to return to school for the remainder of the school year.  That was hard.  It took me a few tries to finally muster up enough strength to push the send button.  I received such a loving and supportive email in return.  I will forever be grateful to her. I know I am blessed! 

THEN, in the afternoon it was time to drop my brother off at the Army office to leave for Basic training.  At one point my Dad, brother, and I were all crying standing in the parking lot.  I watched him walk into the building, and I thought, "he is going to get to live out his dream.  Not many people can say that."  I will never forget March 15th, 2011.

Father and Son

 Andy and Me~Is it clear I had been crying most of the day?

3.  Tournament Flowers!  Every year, Brad goes to watch the first two days of the NCAA Basketball Tournament with friends and family.  A couple years ago, he started a tradition that the night before he leaves, he brings me tournament flowers.  Nothing like a bright bouquet of flowers to make you smile and feel loved.

My Fave~Gerber Daisies

4.  MSU got into the tournament but lost in the first round.  Although this is disappointing, they didn't give up without a fight.  I am proud to be a Spartan!

5.  I know you all have been on pins and needles waiting for this announcement so I'll get right to it...The winner of the 100th Post Giveaway is.....

Mada, I will send you the book and a bonus surprise in the next week!  Thanks for all of the comments! 

Happy Birthday Meghan!

I want to wish a VERY happy 30th birthday to my best friend, Meghan! I love you lots and can't believe we've known each other for 23+ years!  Time flies!  I am so lucky to have been able to share so many milestones, fun times, and not-so-fun times with you as we have grown up together.  Like...    

  

 Many, many gymnastics trips~Always being goofy in the airports

Our First Bahamas Trip...always the first two since we were the shortest :)

 Always finding a way to be upside down together

 Our annual gymnastics photo

 And again...

 More gymnastics trips and more sleepovers...Vegas!

 Florida (I think?)

 Cedar Point

 Arizona?  My memory is failing me...

 Proms!

 College Life!

 Our Weddings

Rehearsal Dinners

 Lots and lots of just hanging out!

 Having kids
and
 illnesses...

I can't wait to share more ups and downs together as we continue to move along together in this journey called LIFE!  Thanks for always being there and for being you!  Have the best birthday EVER! Love you! XO

Happiness Is...

HOPE!

(click on the word...)

"Never let go of hope.  One day you will see that it all has finally come together.  What you have always wished for has finally come to be.  You will look back and laugh at what has passed and you will ask yourself...'How did I get through all of that?'"

~Author Unknown

Eat Your Heart Out Jane Fonda

This would be considered a not so great EDS day...Back brace.  Check! To keep my ribs from subluxing, and to try and keep them in place.  They have been giving me real fits lately.  Cervical Collar. Check!  To keep my neck stable so the headaches and neck pain stay at bay.  And as always, my oh so cute compression stockings to help with circulation (POTS) to keep my blood from pooling. 

Bad EDS day or not, I still gotta get in my exercises!

I look like an EDS bumblebee.

Those are 3 pounders...the idea is less weight, more reps.

 Yes, I have a hole in my compression stockings.  I love my exercise ball.

Core strengthening

Feel the burnnnnnn

Gotta get my leg muscles strong to improve vascular tone and fight POTS

That's my scary, trying to concentrate look.
Balance and proprioception exercises.

 Hi Brad's feet.  Back exercises.

Something that just hit me....How in the world am I going to wear flip flops with these darn stockings?!  Ahhhhhhhhhh!

P.S.  Tomorrow is the last day to comment on my post 100!  I'm picking a winner Friday!

Hmmm

I have been told by a few people that my blog won't let them comment.  Not sure why.  Anyone?

On a random note, it was a good Sunday.  Went to church, spent some relaxing time with the fam, had our last Sunday night family dinner with Andy for a while (tear), and MSU is going dancing! Now it's time to watch one of my new faves, Secret Millionaire.  Life is good.

The Power of Friendship

So sweet.

Five for Friday 3/11/11

1.  Medical Stuff:

• Saw Dr. Rosen which was extremely needed.
• Saw Larry.  He did some gentle neck manipulations, put my lower ribs back in place, and acted as another therapist as we continued to talk about goals.  He gave me Apollo 13 homework due at my next appointment.   Basically I have to relate my disorders and struggles to the movie and present it on a poster board.  He must know I'm a teacher!  Now I must find a copy of the movie.
• 2 days of PT.  Started a small amount of treadmill work.  I realized very quickly that sideways walking on a treadmill is VERY different than forward walking.
• 2 days of home rehab.
• Last day for the PT student who has become a good friend. 
• Called Dr. Grubb's office (for POTS) to check on my waiting list status.  They said they may be contacting me next week for an appointment with the NP next month.  Stay tuned...

2.  I have the best hubby.  Every morning I wake up to a little white note he leaves me before he goes to work.  Sometimes it has words of encouragement.  Sometimes, he writes me funny things.  Sometimes he tells me that the dishwasher is clean.  These little notes are a major highlight of my day.  I have kept all of them since September.  Well, today, not only was my white note waiting for me, but he also left me the Valentine Heart Man he made at school for me.  So cute. I am a lucky girl!

It's a Valentine Brad! He even has his goatee!

Don't mind my feet.

3.  After much stressing and worrying about traveling and sickness, I decided to take a risk and book airline tickets to go to Philly with my Mom to visit my sister, brother-in-law, and niece.  I know once I get there I will be okay since I can rest all I want.  I am just worried about the traveling part of it.  But I have decided that if I need a wheelchair at the airport, I will just suck it up and use one.  With that being said, I am VERY excited to get away and see Kristen, Jake, and my Cici Baby...and maybe even Allie (right Al?)!  I will definitely have therapy homework to do so good thing there is a gym close by.

4.  I gave up chocolate for Lent.  Not crying after all.

5.  Friday night we went to Spring Lake to visit Jill, Daric, Jameson, and Cameron.  We had a blast as usual...The only thing that could have made it better was if MSU had beaten Michigan.  Oh well...at least MSU is still alive and going to the tournament! Thanks Jill for such a fun time! XO 

Cami Rose and Jameson love their Uncle Brad

Daddy's Girls