Five For Friday 12/10/10

1.  Jill, Audrey, Jameson, and Cami came to visit on Monday.  It was awesome to just hang out with the girls!  Jameson and I made chocolate chip muffins, and of course we had to taste test them! I think Jameson approved of our baking. What do you think?

2. My Mom and I did some hard-core Christmas shopping.  I made it through one store without needing my wheelchair.  Baby steps! I am about two-thirds done with my shopping.  Thank goodness for Amazon.com!

3. I traveled to Cincinnati for my much anticipated appointment with Dr. Tinkle.  He did not disappoint! (I will do a lengthy, separate post about the appointment).  I do have to say he has the most FUN and CHEERY office I have ever seen. 

The Princess and the Frog was playing on the TV in the waiting room.



4.  Not only did I get to see Dr. Tinkle, but Brad and I also got to spend a couple of days with my Aunt Mada, Uncle Brock, and my cousins, Ian, Josh, and Flor.  Because of this special time we had with family, it felt more like a vacation rather than another doctor's trip.  Thank you so much Hanthorn family for EVERYTHING!

We were greeted with hand made pictures on our borrowed bed (Thanks Josh) courtesy of Josh and Flor. Notice the Love Monkey in the middle.

Flor and her Love Monkey (AKA Brad)

 More "monkeying" around.

 Ian hard at work on homework after a full day of school, swimming, and Boy Scouts.

 Aunt Mada and Traveler.

 Uncle Brock and his comfy pants.  We ALL love our comfy pants.

Aunt Mada and Josh

I stole some Flor snuggles.

I learned the story behind each Nutcracker my Uncle Brock has given my Aunt Mada for Christmas each year.

5.  I received some very special, inspirational written messages from families from the wonderful Wexford Montessori.  Everyday, I continue to be blown away by people's acts of kindness.

Mind Over Matter

Today I did not spend time in a doctor's office going over my physical symptoms.  Rather, I spent my time at the doctor this morning sorting through emotional symptoms. For 60 minutes every other week, I sit and work through the mental issues and stress that come from day to day life with my psychiatrist of 11 years.

I'll never understand why people feel ashamed to say that they see a psychiatrist or a psychologist.  Maybe in our society, it has come to be a sign of weakness.  But I feel like it is the opposite.  It takes courage to be procative to work on mental health.  And since I firmly believe that there is strong mind-body connection, I feel like for me, consciously working on my mind with a medical professional, will only help my body return to normal life much faster than if I did not attend regular therapy sessions. 

These sessions are probably the most important part of my treatment plan.  Even though they do not slow my racing heart, and they do not tone the muscles in my body in order to keep my body from falling apart more, the sessions bring me the perspective, focus, and determination so that I can give the treatments for the physical symptoms 110%.  At this point, I don't have time to let freaking out interfere with getting better so I find that (for me) seeing my doctor, helps me get out what I need to get out, so I can leave refocused and ready to continue working on the physical parts of the illness.

The biggest theme of today's session, was to simply "work on making today right."  Yesterday doesn't exist.  Tomorrow is a mute point.  So it's all about today, and today only.

I was told that when you often dumb something down, it can be the smartest thing you can do. So basically I was told that I make things too complicated.  Well, who didn't know that :). 

So that is what I am going to work on~ dumbing things down; "Running the mile I'm in..." Right now in this moment, I will sit here and enjoy the Spartan game and work on loosening my muscles with my muscle spasm unit.  Because in this very moment that's what I can control.  This task is much easier said than done, but I realize it is a process, or journey, just like any other treatment plan.

Lastly, I will continue to H.O.P.E!~Hang On Positively Everyday!

Good night!

POTS in the News

Thanks Uncle Steve for letting me know about this article.  It is crazy that since I have been diagnosed, I have actually read two articles in the news about girls with POTS.  This is encouraging to me because hopefully the more POTS is out there in the media, the more (hopefully) will be learned about POTS, and therefore researched about this little known disorder.  Dr. Grubb, the doctor treating this girl who is quoted in the article, is the doctor I am hoping to see in the near future.


http://www.mlive.com/health/index.ssf/2010/12/rare_disease_makes_caledonia_g.html


It is also pretty crazy for me to read a lot of the similarities I also share with this girl in regards to symptoms, our journeys to a diagnosis, the GI problems, and our joint hypermobility (Ehlers Danlos).

Things That Make you Go Hmmm

Now that I know I have POTS and Ehlers Danlos, the question has transitioned from what is wrong with me to why is my body doing what it is doing because of these disorders?  It is ironic to me that I searched for a LONG time for answers, and when I found them, I received answers without answers.  Do not get me wrong.  It is a relief to know my diagnoses.  And it is a relief not to have to go to another specialist only to be treated like a crazy hypochondriac, while being handed a depression scale.  But to be honest, I like things black and white.  I like to know that if I do A, B will happen.  I like to have problems (or disorders) where a "one size fits all" kind of approach tends to work.


But Ehlers Danlos and POTS are definitely not those kind of disorders. And maybe that's why I have them. To help me learn to appreciate the gray.


When I find doctors who actually know about POTS and/or Ehlers Danlos, they explain that they do not know how patients will respond to the prescribed managements/treatments of the disorders because everyone who has them is different.  So, for example, I will say to a doctor, "Do you think prolotherapy will help my instability in my neck?" And the answer will be, "We just don't know.  It depends on the patient."  Or I will ask, "Will the Beta Blocker help my racing heart rate, and the answer will be, "It helps some but not others.  We will just have to see.  It depends on the patient." 


For both Ehlers Danlos and POTS, treatment is all trial and error.  And for both disorders, there is quite a broad spectrum as to how they effect people.  For some with POTS, they are bedridden and on disability.  Others, eat a lot of salt, drink a lot of water, wear compression stockings and are able to function pretty well.  Some with EDS, are in wheelchairs all of the time and most of their joints are splinted.  For others, EDS just produces mild pain at times, but they are able to function and do their daily tasks.   


As I am trying to wade through both disorders and pay attention to MY body with POTS and EDS and how it is effected each day, I find that I come up with more and more questions.


Like...


Why are mornings for me better with POTS when most patients have better afternoons with POTS?


Why do I get sicker, hurt more, and dislocate more joints when I have my period?  Would a low progesterone pill help my symptoms?


Why is my POTS worse when my neck instability is at it's worse?


Is there a combination of supplements that will best help both disorders?  Should I be on Magnesium?


How long will it take to finally get in to Dr. Grubb?


Would I benefit from weekly IV saline treatments to help hydrate me for my POTS?


Why does my Ehlers Danlos pain travel?


Why does the blood that pools in my legs mostly pool in my left ankle?

Why does my cervical collar help keep my headaches at bay, and why is it hard to keep my head up without it?


What is happening in my stomach where some days I can eat like a normal person, and other days, I can only tolerate soup and Ensure?

Why do I have trouble swallowing at times?

What does it mean when I read, "Strength is bad for EDS, but tone is good," and how do I go about toning rather than strengthening?


What mattresses are best, and what are the most accurate heart rate monitors to wear?


Why does stress totally exacerbate my POTS?


How do I know if I am truly drinking enough fluids and eating enough salt?

What can I expect as far as function goes?  Will I be able to return to 100% functionality?

Why are most of the problems that I have as far as pain and instability goes on my left side?


Here's one of my biggies which I'll save for a totally separate post~Starting a family...I have so many questions about that one, I don't even know where to start.  Except I've considered asking Santa for a surrogate.

So that's some of them.  It will get figured out.  It will be okay.  It's life and I have faith.  I know I have to dig deep, find my patience, and keep on keepin on...And hope Dr. Tinkle has SOME answers to these questions.  3 more days!

Five for Friday 12/3/10

1.  Champions!  The Michigan State Football team wins a share of the Big Ten Title for the first time in 20 years.  AND Dantonio was named Big Ten coach of the year! Always proud to be a Spartan! 

2.  My Dad took me to Fort Wayne for a T9 Nerve Block. 

3.  The Maryland Gymnastics Team sent me a "Fight the Dama fight" sweatshirt and a very inspirational card.  I am proudly sporting my new Terps Gymnastics shirt.  How thoughtful of Allie's alma mater to think of me.  I guess if you have one Terp alumni gymnast in the family, the rest of the family is always considered Terp family.  Thank you so much UMD Gymnastics.  Fear the turtle!

4.  I received a book from some of the upper elementary kids at Wexford titled, A Morning Glimpse of Our School for Ms. Katie:  When 24 Sets of Eyes and Ears Spread Out at Wexford.  It's things like this that still make me feel connected.

5.  The tree has been up for a week but we finally decorated it today.  Our house is now officially ready for Christmas.

Notice the "Life is Good" Ornament!

It's Beginning to Look (and Sound) a Lot Like Christmas

Well, Happy December and Hello snow!  I love this time of year.  The lights, the decorations, the excitement, the smells..To me it is a season filled with hope and faith.  Throughout my childhood, my parents always made sure that the Christmas season was a magical season for all of us kids, and at 29, it is still a magical time for me. 

After Thanksgiving, the playing of Christmas music at our house begins at full force.  The problem is, since I am home all day, I have already been wearing out my Christmas albums like crazy.  Therefore, I was curious to know what YOUR favorite Christmas albums are? I would love if you would drop me a quick comment with suggestions for new holiday music.  So let's hear it~What are the holiday albums that best get you in the mood for celebrating this glorious season?

I'll start with my favorites: Harry Connick Jr, Sarah McLaughlin, Josh Groban (stop making fun of me Kristen and Allie), Nat King Cole...

I have also been listening to the new Glee Christmas album.

11/30/10 Thankful

November 30th already!  This month has flown by.  For my last thankful post for the year, I want to go back to two people who I only mentioned briefly in my very first thankful post. I thought about it and I felt like these very special people kind of got the short end of the stick since I included them in a lump with the first nine things/people I said I was thankful for.

As I mentioned yesterday, I have learned from Lisa and from my own experiences that caretaking for someone who is sick is often an extremely thankless job.  Most people are usually concerned for the person who is sick.  The sick person often gets the cards, support, the phone calls, the emails, and the outpouring of kindness... But the caretakers often go overlooked even though they are struggling with the worry, stress, and pure exhaustion that directly accompanies caring for a loved one who is sick.

I am so thankful for the people who have been my caretakers since I have been sick.  I am not sure how I would have survived thus far without them.

Brad, first of all has amazed me with his strength through this time.  He has never wavered in assuring me that everything will turn out okay in the end.  He has endured many mascara soaked shirts.  He has picked up the pieces when everything has seemed to fall apart.  He has picked up the slack of not only working full time, but doing so much of the "extras" such as housework, grocery shopping, cooking, picking up prescriptions, driving me all over the Midwest to doctors.... 

He has rubbed my feet or my back each night to help me fall asleep.  He puts my compression stockings on each morning (which I am convinced would become a viral YouTube video if we ever posted it). That's love people.

When I feel the guilt of, "but you didn't sign up for a wife with an illness" he always tells me I'm silly and assures me he loves me for me, with or without an illness.  Brad has seen the good, the bad, and the ugly, that only a caretaker often experiences with someone who is sick.  I told Brad the other day, that this past year could have made us stronger, or could have made us fall apart at the seams.  I am so thankful that I can say that our marriage is now stronger because of what we have been experiencing together.  Brad, I know you do not often get told this, but I am so, so thankful for you and everything you do for US.  You are the love of my life, and my rock.  I love you and I am so thankful for you.

My Mom, has also been one of my caretakers during this time (who am I kidding...all of my life).  My Mom has understood that while I am sick, it is still important to allow me to do normal things, and to get out into the world.  I look forward to our Sunday afternoons, because this is the time my Mom picks me up and we go to church, to lunch, and shopping.  She pushes me in my wheelchair like she is an expert. 

My Mom is such a sounding board and a voice of reason for me.  She truly gives the best advice.  When I get to my hysterical point, my Mom is best at calming me down and helping me gain perspective.  She always reminds me of how strong I am and that I will get over this hurdle I am facing.  My Mom also has done so many thankless tasks for me as well including driving me all over to doctors, taking my blood pressure, taking me to the ER, constantly lifting me up when I get down...

I know my Mom is tired.  She is tired after having two of her daughters sick in the last three years.  She is tired with worry.  But she never lets you know.  My Mother is the strongest woman I know.  I truly believe she is a saint.  I am thankful that I can call my Mom one of my best friends.  She is my biggest fan.  I love you Mama. Thank you for everything.

And to end this post and to close out November, I am thankful for the opportunities and twists and turns that lie ahead.  I am thankful for the ability to see how my story continues to unfold.  Pure and simple, I am thankful for my life.