Turning Up the Heat

Pretty much sums it up...

Five For Friday + 1...6/11/11

Late again.  I am noticing a pattern.  If I have a crazy week, then by Friday night I have about one spoon left which I need to use to get ready for bed instead of blogging.  Last night I was also covered in Vick's Vapor Rub from head to toe and had to do a couple of nebulizer treatments to get my asthma under control.  I am really, REALLY trying to dodge a trip to urgent care.  Anyways, here are my "five + 1" for this week....

1.  Medical Stuff:

• 1 Day of PT
• 3 Days of Home Rehab
• Had another appointment with Larry to help with some of the rib and neck pain I have had lately.  He did some GENTLE manipulations.  No assignment is due until my July appointment.
• Awesome appointment with Dr. Rosen.  Theme:  Evolving. 

2.  As you probably have already read, I was in the wrong place at the wrong time on Tuesday, but I was also extremely lucky.  An armed robber hit my car going 100 MPH during a police chase.  He was eventually caught and arrested on the lawn of the Lugnuts Stadium.  The extent of what could have happened to me did not really register until the police officers came to my house to do the report.  I was told that they do not see many people come out without a scratch after something like that and I definitely had someone watching over me.  Then, I really lost it when Dr. Rosen told me the next day, "The Big Guy doesn't usually let people survive getting hit at 100 MPH unless they still have some important things to do."  I can't say it enough.  I am blessed.

http://www.lansingstatejournal.com/apps/pbcs.dll/article?AID=2011106080317

http://www.lansingstatejournal.com/apps/pbcs.dll/article?AID=2011106090333

3.  While Brad was golfing last weekend, my Mom-In-Law and Dad-In-Law picked me up Saturday to go to my sister-in-law, Jill's house in Spring Lake.  What a fun getaway.  I got to hang with Jill, Steph (sister-in-law), Chris (brother-in-law), and 4 out of 5 of my nieces-Casey, Kendall, Jameson, and Cami Rose.  We spent time at the beach in Grand Haven.  Casey, Chris, and I were the crazies and swam in the 58 degree Lake Michigan water.  Let me just say that I realized the water was some great pain management!  We also played Scattergories, ate yummy food, and watched Casey's soccer game at Grand Haven High School.  Thank you Jill for such a fabulous weekend!

Kendall

Cami Rose

Auntie Steph and Jameson

Cami and Pa

Soccer!

Jameson and Kendall in deep conversation

Steph, Kendall, Jameson, and Grandma

Oh, and Brad did not win the trophy.  I am glad someone else won it this year :)  He came home in one piece.

4.  Dad had surgery yesterday.  Last Saturday morning he broke his foot coming down the stairs.  He met with the surgeon Tuesday and was told he needed a plate and 6 screws, which is exactly what was done.  You never know what will happen when a Dama goes in for surgery, so I am happy to report that everything went as planned.  He is doing well, and will be in a boot for 6-8 weeks. 

Fake smile-"Kate, get that camera out of my face."

He's gonna kill me. He he.

Dad's new hardware

5.  I was so happy I was able to attend my Principal's retirement party Thursday night.  What a nice tribute to a great leader.  I will never forget the support she has given me as a teacher and throughout this roller coaster of the last year.  She will be missed!

Me and Nabila Boctor

Me, Nabila Boctor, and Theresa

+1.  I dropped my phone in the toilet and it is dead as a doornail.  Hopefully I will get a new one today.  IPhone or Droid?  IPhone or Droid?  IPhone or Droid?  

A Grateful Letter

Dear Angels Who Watch Over Me,

I just want to say thank you for protecting me this morning when I was hit by an armed bank robber going 100 MPH during a high speed police chase.  I was a little freaked out when I counted 26 police cars whiz by me as I drove to a doctors appointment, and you must have known.  You guided me safely into the right lane where I stopped as more police cars sped past me.  Then when the bad guy in the gold car sideswiped my car, and jolted me and my car forward, I did not even feel an ounce of pain, and my car was only left with a large scratch.  I also want to say thank you for protecting and guiding the hard working police officers to be able to arrest the man without anyone getting hurt.  Finally, thank you for keeping the other drivers in the cars who were also hit safe too.  Today, I feel very lucky and very blessed.

With much gratitude,

Katie

The Bright Side of Chronic Illness

Dr. Rosen asked me at my last appointment if I wished I was never diagnosed with EDS.  I was already emotional and actually got kind of angry at his question.  Without any hesitation, I snapped back that of course I wish I didn't have EDS. 

After I left my appointment that day, it was as if Dr. Rosen's question was haunting me.  I could not get it off of my mind.  I realized as I thought more and more about it that the answer to that question is not as black and white as I thought it was at the time.  I took that question with me to therapy.  I took it with me to Georgia.  I sent my Aunt Mada a Facebook message about it to see what her perspective was since she lives a full and active life with MS.  And then I thought about it some more. 

If I am going to be brutally honest, EDS is not a fun disease to have.  It can be relentless and unpredictable, and at this time, there is no such thing as a remission or a cure.  It is always there, reminding me that I have limits and that the life that I once knew has changed.  But if I am going to continue to be brutally honest, then I must also acknowledge that many beautiful gifts have come from having both EDS and POTS.  As I have progressed through the emotional side of accepting POTS and EDS throughout the last seven months, these blessings have become clearer and clearer.

On the airplane coming home from Georgia, I decided that it would be good for me to focus on these blessings, so I made a list.  Therefore, the following is what I believe to be the positive side of having two chronic illnesses...

1. You do not have the time or the energy to waste on stupid stuff or drama anymore.


2. Priorities become vividly clear.


3. Working towards goals become your way of life, which makes life more fulfilling.


4. Advocating for yourself becomes second nature.


5. You really start to pay attention to, and appreciate, good news and success stories.


6. You don't have to guess what the genuine, true relationships in your life are. You just know.


7. You develop an empathy that is hard to have unless you've been in a similar place. You become less judgemental and more compassionate.


8. Your vocabulary increases tenfold.


9. You realize that faith really is a huge player in life.


10. The little things in life don't seem so little anymore. The big things in life become a whole lot bigger.

Aunt Mada suggested this classic Monty Python song and I thought it was perfect.

Ehlers-Danlos Conference 2011

Here is the tentative schedule for the EDS conference in Baltimore on July 21-23.  Hopefully handouts from sessions will be able to be downloaded and printed, since I do not think it is in the cards for me this year.  It looks like a lot of good info is being presented, and Dr. Grubb is even presenting about POTS.  I will definitely shoot for next year's conference!

http://www.ednf.org/index.php?option=com_content&task=view&id=2064&Itemid=88889227

Five For Friday 6/3/11

1.  Medical Stuff:

• 1 Day of PT
• 2 Days of Home Rehab
• Prolotherapy round 5 was on Tuesday on my left hip, lower back/rib area, upper back, and neck.
• I scheduled an appointment with Dr. Grubb for July 11.  When I saw Beverly, his NP, in April for POTS, she told me to call at the beginning of June to make a follow-up appointment with Dr. Grubb. Since I was told he had "more than a year waiting list" when I was trying to get into him in December, I did not think it would be possible to just call in June and get into him in July.  But it was super easy.  I could have seen him July 1st if I had wanted.  I guess when you are already an established patient, it makes a world of difference.

2.  I visited the school where I teach on Thursday.  I saw a few of my closest teacher friends and the kids in my classroom.  Mrs. Blake and Ms. Margaret have done such an amazing job with the kids in my absence this year.  Words cannot describe how grateful I am.  The best part of course was seeing the beautiful kids.  I definitely felt the love and was very impressed with how far many of the kids have come this year.  Kids I had last year who didn't know letter sounds were writing sentences yesterday!  What a mixed bag of emotions I felt in those two hours.  Excitement, love, sadness, hope...Thankfully I had physical therapy immediately afterwards, which was a great place to release a lot of these emotions.  

These are the things that just add to my motivation.  Makes me tear up just looking at it.  (Karen, don't start, or I will too! :) ) 

  
3.  On Sunday, my Mom and I were stuck in the back of the Okemos Target for an hour and a half during a tornado warning with many of the employees and customers.  Luckily, we made it out safe and sound.

Holding my $3 off voucher I was given for my "inconvenience," and wearing my new straw beach hat.  That is one yucky extreme close up!

Mom sitting in the back of Target with a bunch of people in her new beach hat.

4.  On Memorial Day, I went to the cemetery with Brad, my Mom, and my Dad to pay my respects to Grandma Gert and Grandpa Dudley.  We cleaned off their graves, and brought them the flags from Andy's graduation ceremony.  

RIP Grandpa Dudley

RIP Grandma Gert

Mom holding the flags from Andy's graduation before she put them next to her parent's graves.

Love you and miss you Grandma Gert and Grandpa Dudley

5.  This is the time of year I barely see Brad.  He is so busy with end of the school year events, going to Camp Ebersole, his annual "Guy's Golf Weekend," and coaching MSU Basketball Camps.  This weekend is the golf weekend.  Last year he won the trophy for being a trooper when a golf cart fell on his leg and he had to go to the ER....

He has had the cup a year now, so it is someone else's turn to win the cup.  I told Brad when he left that it is not worth it to win it again this year...No injuries, PLEASE!  He answered with, "Well, if you win it two years in a row you get your name engraved on it."  Oh boy.  Let me just say that if he doesn't win it this year, I will be content knowing his body is (hopefully) in one piece, and that I will no longer have to dust it each week.  

While Brad is in Gaylord golfing, my Mom is at CMU at Special Olympics with her students until Saturday.  Therefore, my Dad and I had a sushi date last night.  Yum.  If you live in the Lansing area and have not tried Sushi Moto, you should.  It's really fresh and so good.

I was dying watching my Dad use the chop sticks

Making our way through the rolls.  Mmmm

 

"Pain goes away. Pride lasts forever." ~unknown

Round 5 of prolotherapy...check!  After six weeks, my Dad and I returned to Mishawaka for another treatment of prolotherapy.  I am such a "routine" person.  We have a routine down for on the way there, while I am prolo'd, and for on the way home.  Routine gives me comfort; especially on a day that is not the most comfortable. 

On the way there, we chatted and listened to Jimmy Buffett and the Zac Brown Band.  We listened to this song multiple times.  It has turned into a "drive to prolo" tradition.  It lightens the mood and calms the nerves. When we got to Mishawaka we stopped at the usual gas station. While my Dad filled up, I went inside and got my usual English muffin sandwich at Subway.  I ate it as we drove to the office.  By now, we don't need written directions.  We know we are at the correct street when we see the Hooters Restaurant on the right and the Honkers Restaurant on the left.  Whatever helps :)

Once we got to Dr. Cantieri's office, I was called back right away.  I knew the drill....Get on the scale, sit to have my vitals taken, and then wait for Dr. Cantieri to come and get me.  When we went back to Dr. Cantieri's office, we talked about how my last six weeks were, my progress, my concerns, and we even chatted about family.  Dr. Cantieri is a doctor who cares about more than just the doctor stuff.  He wants to know how I am doing as a person.  He wants to know how Brad and I are doing as a couple.  As a person who happens to be a patient, that means a lot to me. 

I told Dr. Cantieri that I still felt like I was improving, and that I gauge it by how much I have to brace myself.  I told him I have not had to wear my neck collar or back brace nearly as much.  I did tell him that my left lower rib area, and upper neck area still are giving me trouble.  With that, Dr. Cantieri asked about my hip, and I told him that, yes, I do have problems with it from time to time, and when I was a gymnast my SI joint gave me lots of trouble.  He examined my hip and decided to prolo the area because, he explained, that if my hip is loose and not working properly, it can be causing me a lot of the rib pain that I experience. 

After discussing everything, Dr. Cantieri started the injections.  He warned me that the hip joint is one of the most painful joints to have prolo'd.  Wow, he was not kidding.  I nearly came off the table, but it was over and done with pretty quickly.  After my hip, my SI joint area was injected along with my rib area, upper back, and neck.  With this round, I again did not have to have nearly as many injections on the right side of my body.  I just have to continue working hard on getting my pesky left side under control with PT and prolo.  I am proud of my Dad because he was able to take the pictures without getting sick; especially since he told me later that day that the hip injections were hard for him to watch. 

As I was being injected, Dr. Cantieri and I talked about Georgia, different styles of prolotherapy, and how his son is in the Air Force.  When I was finished, we discussed how he wants me back in 4 weeks instead of 6 weeks to stay on top of my hip.  So June 27th, I will be going back for round 6. 

We were on the road an hour and a half later.  The ride home is very different than the ride there.  On the ride home I lay in the back, wait for the Tylenol to kick in, I surround myself with pillows, and I lay in silence.  Definitely no chicken song on the way home. 

When we got home, I followed my usual routine of laying on my pillow fort in our chair.  I was hungry so I ate dinner, and then about an hour later, I was getting sick in the bathroom.  I have embraced it as part of the routine, and have come to terms that it is just part of the day.  The thing about it is this:  I know that all of the pain and sickness I feel on the day of prolotherapy is temporary.  I can deal with temporary, as long as I continue to feel that my body is achieving more stability.  As my sister-in-law, Audrey, would say, "Life is hard...get a helmet."  I just know that prolo days are days I wear my "helmet."

Today, I am supposed to be visiting my classroom, but it will have to happen another day.  Since round four wasn't as bad, I thought I was going to be able to function enough today to go see my Wexford family.  After beating myself up a tad that I am not there, I finally just had to chalk it up as, "It is what it is," and hopefully I can go tomorrow before therapy.  So, today I have embraced the fact that it is a "moving very slow, blogging, kind of couch day." 

Before Prolo

Dad

Principles of Prolotherapy, written by Dr. Ravin, Dr. Cantieri, and Dr. Pasquarello

After the hip, the lower back/rib area was injected

Then on to the upper back and neck

Upper back and neck are done!

Closer up

Sitting up, ready to change, and get on the road

Pillow Pet Love

Thumbs up for surviving another round