A Different but Similar Perspective

My friend Ila, who also has EDS and Dysautonomia recently sent me this blog post she came across to read (If the rest of this post is going to make sense, then you should read the post from the link above first).  I read it a few times, and have thought long and hard about this person's perspective.  I totally respect what this person has to say and her experiences with both Dysautonomia and EDS.  There are so many things she says that I found myself nodding my head in agreement to.  However, there are a few things from this post, that I would like to just bring a different perspective to.  I feel that we must keep in mind that when someone blogs, it is one person's perspective, based on their personal and individual experiences.   


I, myself, have to realize that when I post about EDS and POTS, it is from my experiences, and my experiences only; MY symptoms, My struggles, My triumphs, and where I am on the very wide spectrum of both disorders.  I know there are going to be things I say along the way that people disagree with, but when I started this whole blogging thing, I knew that was all part of the "game." 


Since reading the above post, I have felt compelled to respond. My following response is by no means an attempt to attack, or put this blogger on the defensive.  It is to merely express my differing perspective about a few things that were mentioned, based on my personal experiences living with EDS and POTS. 

This, my friends, is what I believe to be the beauty of putting thoughts out there.  It gets people talking.  It gets people thinking.  It might just cause one of those rare "aha" moments in life.  And the hope is that the talking and discussing that results can be conducted in a supportive, productive, and respectful manner. 

Thank you Ila for sharing this with me, and thank you to the blogger who helped me see things from a different point of view.

My Response...

I have wrestled with that question, "Do I think I am sick?" for a while now.  Reading this post was actually very timely for me in processing this question.  Hopefully I will not confuse you with my perspective about this topic, which can, at times, still become confusing for me...

Dr. Lavallee is my EDS doctor too.  I have also adopted his core belief and philosophy that strengthening the muscles MUST be more than a hobby for us EDS'rs.  Physical therapy, prolotherapy, and overall strengthening work have become my way of life; non-negotiable, necessary, a means to hold my body together.  I agree wholeheartedly with all of the points in the post that staying active is imperative to maintaining a quality of life. For example, I will now not allow myself to go to a movie or an outing, if my therapy is not done first.  Dr. Lavallee is right.  It has to be a part of my daily routine like eating, drinking, and going to the bathroom.  Since my diagnosis, I have learned that it is crucial to my survival, well-being, and functioning.   

I also agree that inactivity is my enemy.  That is how I became sick, yes sick, in the first place.  I was having many strange symptoms and pain with running so I stopped.  I thought stopping running would allow my body to heal, but this backfired big time.  My health declined rapidly; which sent me on the diagnosis goose-chase.  Little did I know that allowing my muscles to lose their tone, would make my body crash to a point where I could not eat, where I had to crawl from room to room because if I walked I knew I would pass out, where I cried each day thinking I was going to die before anyone ever figured out what was wrong with me.  Sounds extreme, but that is the God's honest truth.  

In addition, I feel there is also a fine line in thinking that rest is my nemesis.  My PT has gone over with me time and time again that if I just push through the sickness I experience, 9 times out of 10, I will just become sicker and need more rest and recovery time.  I have learned this the hard way after she has had to kick me out of the therapy gym a few times.  Therefore, I do not think it is as simple as pushing against the limits.  I am finding that a key for ME is yes, consistent activity, but it is also knowing my limits and remaining within them.  I have hugged the toilet bowl too many times to know that I can't ignore my body's signals that it has had enough.   

So, do I think I am sick?

I do not think EDS itself makes me sick.  I like the term the blogger uses for EDS:  "broken."  I find that to be an appropriate term since there are many days my ribs or my shoulders or my back feel broken...But for me, it can be more than that.  I definitely can become sick from the manifestations of EDS that I experience.

As I read her post for a second time, I found that our opinions probably differ the most about Dysautonomia.  I always try and explain to people that EDS causes me pain and fatigue, but POTS causes me the sickness part.  I would not have had to take a year off of teaching if it was only because of pain.  I have a high pain tolerance and can push through a lot.  It was the sickness from the Dysautonomia (tachycardia, body heaviness, losing a lot of weight in a short amount of time, dizziness, brain fog, slurring speech, flu like fatigue, migraines, nausea, vomiting, cramping...) that kept me from working this year. 

As I read her post for a third time, I still questioned myself as to if I think I really am sick.  I got out the dictionary and looked up the term, "sick," wondering if our viewpoints were just a matter of semantics.  According to Webster's Dictionary, The definition of sick is, "suffering from disease; ill," and the definition of ill is, "not well; sick."  If I go by these definitions alone, then yes, I do believe that the manifestations that I experience from EDS can make me sick. 

A perfectly healthy person does not throw up and become dizzy from standing up for more than a few minutes.  A perfectly healthy person does not experience migraines and extreme nausea with too much activity.  A perfectly healthy person does not feel like they are can't form a sentence because they are not getting enough blood to their brain, and in turn slurs their words and feels like they weigh a thousand pounds.  A perfectly healthy person does not experience flu-like fatigue from going to Walgreen's. 

Maybe it is all a matter of semantics, but I felt that it was important for me to get my perspective out there too, for my peace of mind. 

With that being said, there are days I do not feel as sick, or as broken.  These are my good days.  The days that I usually push myself to do more and more.  Sometimes I pay and then get sick (usually vomiting) from not listening to my body, and pushing too hard, but there are other good days where I find that I can handle pushing myself further.  

Basically, as I thought more about it, I don't think "sick" is as black and white as it is being made out to be.  To be honest, I have struggled with this for the past year....Not feeling weak, or guilty, or ashamed to admit that I have been sick.  But I also like to believe that I have a never say die attitude, and I will fight until becoming sick because of these invisible illnesses, becomes less frequent, and more of just the "background noise" in my life. 

I don't usually like to focus on how the illness aspect of it all affects me.  But I also believe in being real.  I respect what this blogger has to say, and to be honest, I am happy for them but also a tad bit envious that they feel like they are not sick.  I think one must think hard though, when telling a whole population of people with EDS and Dysautonomia that they are all not sick.  I do not think that can be determined until they live a day in each person's body, and experience where they are on the very, very broad spectrum of both EDS and Dysautonomia.  

I am going to leave it at that.  Hopefully I am not out of line, and I apologize in advance if you think I am.  Again, I realize this is someone else's perspective and I thank them and respect them for sharing. 

Now that I feel like I have said what I needed to say, I will go back to focusing my energy on being strong, determined, tough, and a fighter.  It is crucial for me to return to focusing on building a life of fulfillment and happiness; a life where EDS and POTS do not define who I am.   

ABC's of Me

Because I am procrastinating...

1. Age: 29
2. Bed size: Queen
3. Chore you hate: cleaning the tub/shower, dusting the blinds, cleaning out the refrigerator
4. Dogs: Nope but if I did have one I would name him/her Murphy
5. Essential start to your day: coffee with Silk, Today Show, Chobani
6. Favorite color: purple and for clothes black/white
7. Gold or silver: silver
8. Height: 5’2
9. Instruments that you can play: none...No musical talent whatsoever, right family?
10. Job title: Early childhood Montessori teacher.  Working my way back to return to teaching kindergarten and pre-kindergarten.
11. Kids: Not yet
12. Live: Lansing, Michigan in a blue and white ranch.
13. Mom’s name: Mary, Mom, Mommy, Big Mare
14. Nicknames: Kate, Bulldozer, Goose, Mongoose, Buns...too many
15. Overnight hospital stays: for asthma and for my left arm and hand reconstructions
16. Pet peeve: lying, complaining about something but not being willing to work at it, not using manners
17. Quote from a movie: "I'll have what she's having."  "I'm a one man wolf pack."
18. Righty or lefty: Righty all the way..so much so that I have a muscle imbalance problem that gives me fits.  I'm working on it though.
19. Sibling: Kristen, Andy, Allie....Jill, Audrey, Daric, Chris, Stephanie, Jake
20. Time you wake up: usually between 7 and 8
21. Underwear: ummm, yup.  I wonder if anyone answers no
22. Vegetables you dislike: broccoli, raw onions, beets
23. What makes you run late: not being able to decide what to wear
24. X-rays: way too many to count...on most parts of my body multiple times
25. Yummy food you make: bahaha...spinach lasagna in the crock pot.  desserts.  tuna fish, hard boiled eggs
26. Zoo favorite animal: monkeys, otters, giraffes

Taken Too Soon

Michigan State University's Department of Education, the #1 teaching program in the nation, does not prepare you for this kind of thing.  Two and a half years of intensive Montessori training does not prepare you for this kind of thing.  Nothing can prepare you for this kind of thing. 

Yesterday, Tori Croff, an eight year old from Wexford died after drowning while playing in a Barry County Lake.

Tori was never a student in my class, but everyone knew the Croff girls well.  I had Tori and Josie a couple of times in an exercise class I led in Wexford's after school program.  Tori had a way of lighting up the room.  The three Croff girls always seemed so inseparable; bonded in a way that seemed so special.  I would watch them play after school and the way they interacted always reminded me of my relationship with my two sisters.  Watching the obvious love they shared for each other always made my heart smile.  Today, my heart hurts for her family; especially for those two precious girls, and her parents.  There really are no words.

Rest in Peace, sweet Tori. You are an angel and will be missed dearly.  My thoughts and prayers are with you and your family during this difficult time. 

 If you are a person of faith, please help lift this family in prayer.

 http://www.lansingstatejournal.com/article/20110620/NEWS01/306200003/8-year-old-Lansing-girl-dies-one-day-after-being-pulled-from-Barry-County-lake?odyssey=tab%7Ctopnews%7Ctext%7CFRONTPAGE

Five For Friday 6/17/11

This is going to be real short and sweet, and pretty boring since I have family to spend time with...

1.  Medical Stuff:

• 1 day of PT.
• 2 days of Home Rehab.
• First time in a while I had 0 doctor appointments in a week!

2. Brad joined FACEBOOK!  This is big news if you all know him.  He was adamant he never wanted one, but now he is an old pro.  Never say never!

3.  I got my toes done with Mom and Sue.  I'm not sure if anyone is able to tell, but I have butterflies on my big toes.

4.  I spent a while in my classroom on Monday "helping" clean and store everything away.  I say "helping" because I came from therapy so I basically watched Zondra and Margaret pack everything while I labeled a few boxes.  Zondra + Margaret=An unstoppable dynamic duo.  I am still not sure how I got so lucky this year. 

With my Godsend, Zondra, A.K.A. Mrs. Blake. 

The incredible Ms. MarGREAT!

I love you classroom!  I am working hard so I can see you in the fall!

5.  I am in Philly with Allie, Kristen, Jake, and Mom celebrating CeCe Baby's first birthday!  Gotta save my spoons so more to come when I get home! 

Potpourri

There's a lot I want to blog about, but yet I don't want to blog about.  I know that doesn't make sense whatsoever.  My mind is one, big jumbled up mess.  I hope you all reading will bear with me, while my "jumbles" start to straighten themselves out.


So I am going to just type random stuff, because that is how I roll today.  Very, very random.


My toenails are now purple with pink and white butterflies on my big toes.  For the rest of June I am looking forward to: Philly for CeCe Baby's first birthday party, the weekend Jaskolski family getaway at my sister-in-law, Jill's house, having Brad around after MSU Basketball camps are over, U2.  Speaking of U2, the concert is a big deal to me.  When Bono hurt himself and cancelled the tour, I was so relieved because I was really sick.  This may sound corny, but this year, I have done hours and hours of therapy with U2 blaring in the background, telling myself when I see Bono, we will both be healthier.  My "must hear" songs are "Bad," "One," and basically any other hits from the 80's/90's.  I love watching Brad leave for, and come home from coaching at the MSU BB camps.  He is like a kid on Christmas.  I could handle the weather we had today every day of the year....But the cottonwood is making me miserable.  We had spaghetti and clams for dinner tonight which happens to be one of my faves.  I never thought that was a weird dish until Brad was over at my parents early on in our dating days and said he's never seen anyone eat it.  Must be an Italian thing.  Being in a flash mob, and becoming a personal trainer have been added to my bucket list.  Midodrine makes me feel like my hair is standing up straight, and it gives me constant goosebumps.  Strange.  I have been feeling a little more insecure than normal.  It hit me recently that this summer I will not have to travel the Midwest seeing doctor after doctor.  I just get to see the ones that "get" me.  So, so comforting.  I was recently told that I, "put on too good of a face for my illnesses."  I am wondering what kind of face I should put on?  Having a routine choreographed by Mia Michaels or Travis Wall is a dream of mine.  I am thinking that life is too short to hold grudges.  I am addicted to my new iphone. Not good.  Not good at all.  I cried hard when I watched Meredith Viera's farewell on the Today show.  Matt, Al, Meredith, and Ann have become my early morning buddies this year.  I am reading The Shack.  It is good, but I am finding it is taking me a long time to get through it, and I am usually a super fast reader.  I feel like I have to read each page a couple times.  I am in sibling withdrawl.  My PT is trying to get me to a place where I can do some spinning, and that makes me happy.  My wish list includes a countertop, laptop, new Mizuno's, a petite Maxi dress, a new mailbox, a Canon Rebel, a pool, a bedroom set, cool wall art from art fairs, and a baby.  I am wondering what people who read this would think are good blog topics?  I have a lot of questions about Extreme Couponing.  I feel bad for Selena Gomez (Bieber's gal pal).  I hear she is having some wierd medical issues that have to do with her blood pressure.  If this entertainment news is real, I would tell her to, "NEVER Give Up" until they figure it out.  I have been on a pear and hard boiled egg kick.  Not at the same time though.  I got sad when my size 0 and size 2 shorts from last summer didn't fit me and then I quickly remembered what last summer was like drinking Ensure, and my sadness turned into happiness.  Being a grown up can be awesome.  Being a grown up can be so hard. 

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?