Saturday, April 30, 2011

Five for Friday 4/30/11

1.  Medical Stuff: 
  • 1 day of PT: More circuit work, more pelvic clocks, and I graduated to the full foam roller for back stabilization marches!  Woot! Woot!
  • 2 days of home rehab.
  • I had my tri-weekly Dr. Rosen appointment.  The quote of our session (which should be the quote for my life) was, "All you need to worry about is making today right." ~Dr. L. Rosen.  I also followed Larry's instructions and showed Dr. Rosen my Apollo 13 poster.  He gave me another A+, and thought it was a genius exercise for me to do.  Gotta love the team approach when it comes to my docs. 
  • It's been a week of increasing my Propranalol.  I haven't felt a huge difference, but hopefully when I add Midodrine to the mix next week, I will feel better. 

2.  EASTER!  Sunday morning we got up and went to Mass at St. John's.  I swear there were 600 people there.  Thankfully, Allie, my Mom, and I snagged a seat.  Brad and my Dad stood in the back.  I made a mental note that next year, we must leave at least 15 minutes earlier!  After mass, we went to brunch with the Herners at the Radisson.  Talk about food!  It's become an Easter tradition that we stuff ourselves so we can't move the rest of the day. 

Brad and I

Mama and Pops


Mom, Dad, Allie, and I


Al and I in front of one of two dessert tables.  Mmmm


Sue, Mom, and Al


Brad, D.J., and Doug


Doug and Dad; a scary pair ;)

BUNNIES!


My eyes were definitely bigger than my stomach! 
I could finally eat chocolate again!  I probably ate 1/4 of this...

Gotta save the best pic for last...My Dad didn't know that he was supposed to put each food item on a stick and THEN put it under the chocolate fountain.  Instead he put the food on his plate, put his whole plate under the fountain, and dripped all the way back to the table.  Whatever works Dad.


3.  I cooked!  I actually cooked!  And the people I fed survived! 

Egg Bake to celebrate the Royal Nuptials

I made the spinach lasagna we had in Philly. 
 It wasn't only edible, but it was yummy if I do say so myself.

4.  My new compression stockings arrived!  OPEN TOE with painted toenails AND flip flops. 



5.  I ended this week with a bang!  My Aunt Mada, Aunt Laurie, cousin Jenny, and I went to The Ark in Ann Arbor Thursday night to see Chris Trapper and Colin Hay in concert.  The concert surpassed my expectations by a mile!  Then we went back to Lansing, to have a Royal Wedding sleepover.  I am going to post more about the blast we had together, but until then, here is a preview of the hat I donned for the wedding. It's title is "Purple Majesty,"  courtesy of designers, Lady Laurie Dama, and Lady Madalena Hanthorn.    

Friday, April 29, 2011

This is all I got...

I came across a couple of interesting blog posts by eye doctor, Diana Driscoll about EDS and POTS, and the possible MS connection.  You can read them here.  (It makes more sense to read the second one first and then scroll up to read the first one.)

I'm running real low on "spoons," and this is all I have in me for tonight.

Five for Friday will be a day late.  It's off to bed for this girl!

Wednesday, April 27, 2011

Rain, Rain Go Away

I miss you, sunshine.  This rain is getting O-L-D.  C'mon sun, I know you want to come out and show yourself.  I would really appreciate a little Vitamin D.  I hope to see you REAL soon.

I love you sun.  That is all.



Saturday, April 23, 2011

POTS in Toledo

April 20th was finally the day I had been waiting for!  Brad and I went to Toledo for my POTS appointment with Dr. Grubb's nurse practitioner, Beverly.  When I was diagnosed back in November, I researched, and researched, and researched POTS like it was my job.  I would say that 90% of what I found about POTS was either written by Dr. Grubb (an electrophysiologist), was written by a team of doctors including Dr. Grubb and Beverly, or included quotes from Dr. Grubb.

When I went to see Dr. Tinkle in Cincinnati for EDS, Dr. Tinkle told me I needed to get in to see Dr. Grubb because he has such a strong understanding of not only, Dysautonomia, but also how POTS and EDS play into each other.  However, I was warned that it takes quite some time to get into him because people all over the country travel to see him. 

Well, it became my mission to get an appointment with Dr. Grubb at the University of Toledo's Heart and Vascular Center.  I called, and the schedulers told me it would take a year or more to see him.  However, I was told, that if I wanted to see his NP, Beverly, it would take about four months.  I jumped at the chance since I knew that Beverly's name was also included as an author on many of the research articles about POTS that were also written by Dr. Grubb.  It was clear to me that Bev and Dr. Grubb work very closely together.

I sent my tilt table results, QSART results, and notes about my diagnosis to their office in December.  I was called in March to schedule an appointment for April to see Bev.  When they called me, they said to expect to wait quite some time in the waiting room, but once I was called back, Bev would go over everything with me. 

So, six months after my POTS diagnosis, it was finally time to travel to the University of Toledo.  I was so excited to see what Bev had to say, and to hear what she recommended for me, since I have felt all along that POTS has been a weak link in my treatment and understanding, and has been really keeping me from functioning at a level that allows me to live my life the way I want to.

We got to the office at 12:45.  My appointment was at 1:00.  Like we were warned, we waited until 2:30 until, I heard "Kathryn" from Bev's nurse calling me back.  For the hour and a half that we waited, Brad and I both wrote Andy some pretty lengthy letters.  At least we were productive!

When I went back to the office, I was weighed, my vitals were taken (blood pressure was high again...are you noticing a pattern?), my family history was taken, I rattled off my list of medications, and my heart rate and blood pressure was measured four times: laying down, sitting, standing right away, and standing after five minutes.  My blood pressure remained high all four times, but my heart rate remained pretty stable.  The Propranalol (Beta Blocker) I take seemed to be doing it's job. 

Bev came in about twenty minutes later.  I immediately liked her.  She had a very warm demeanor, and made me feel right at home.  She also made it a point to address both Brad and I because she acknowledged that all of this medical stuff affects both of us.  Isn't that the truth! 

Bev first went over the basics; we talked about my diagnosis, where I was diagnosed, my tilt table and QSART results, my EDS diagnosis and the fact that I am a type 2, my main symptoms, what I have done so far to manage, being out of work, my family history, and how I feel about my meds.  Then she listened to my heart, and did a quick exam.  She saw my compression stockings, and asked if they help.  I told her I thought so, but it is hard for me to say what helps and what doesn't because I pretty much started everything all at once-meds, salt, water, stockings.  I did tell her that the Propranalol seems to help somewhat, and she also agreed that it seems to be, from my heart rate readings (from that day).    

I did tell her I was concerned about Florinef and weight gain.  She said that weight gain is very common on Florinef, but not to worry, because she was thinking she would take me off of Florinef and that we would discuss why later on. 

At this point, Bev had us move to a bigger room with a computer that contained hundreds of slides about POTS and other types of Dysautonomia that Bev and Dr. Grubb put together to educate patients.  Because I learned so much information, I am going to split it up into sections from here on out... 

Disclaimer:  I am going to attempt to explain everything as accurately as I can, but I am sure there may be things I either do not explain as well as it should be explained, or as accurately as it should be explained.  Like I said, I will do my best!  Also, I am NOT a doctor.  The medical information and treatment suggestions are meant for my personal use only.  Consult a doctor if you have questions about any of the medical info/treatments.

What is Dysautonomia?

Simply put, Dysautonomia is when the Autonomic Nervous System malfunctions and is out of whack.  Further, the Sympathetic and Parasympathetic branches of the nervous system do not communicate like they should.  There are different forms of Dysautonomia, but I am clearly a POTSIE because of my symptoms and tilt table results.  POTS is NOT a heart condition.  It is a disorder of the Autonomic Nervous System, which is the system that does everything we don't think about-blood pressure, circulation, bodily temperature regulation, heart beating, sweating, mood, bowel movements, urinating, etc...When the Autonomic Nervous System is not working like it should, it can affect all of these bodily functions.

Bev explained that so much more is known about the disorders of the Central Nervous System, than the disorders of the Autonomic Nervous System because disorders and diseases of the Central Nervous System have been researched for a much longer time period, than disorders of the Autonomic Nervous System.  Hopefully, as time and therefore, research progresses, more treatment options will be available to provide more relief to people who suffer from Dysautonomia. 

Why the EDS and POTS relationship? 

Ehlers Danlos Syndrome is a connective tissue disorder.  In people with EDS there is a defect in the connective tissue, which is meant to provide support to many body parts such as the skin, muscles, blood vessels, and ligaments.  Connective tissue acts as the "glue" to support these structures in the body.  In simple terms, the defect in my connective tissue makes me too stretchy.  Since blood vessels are made out of connective tissue, they do not "squeeze" like they should.  So when I stand, and a lot of my blood volume goes to the lower part of my body because of gravity, the blood vessels are unable to squeeze the blood to my brain (and other areas of my body) like they should.  This causes my my heart to then work too hard (tachycardia), and I feel a multitude of symptoms~mainly brain fog (can't think, feels like I am in a cloud, can't find the words I want to say, etc.), dizziness, body heaviness, extreme fatigue, abdominal pain, nausea, constipation, like I am going to pass out, sweating out of the blue, anxiety, the inability to get warm or cool down...

Why at 28 did POTS hit me hard and cause my body to "crash"?

This was so interesting to me.  Bev told me that just like I have had EDS all my life, I have also had the tendency for POTS my whole life.  It just needed a trigger to "show itself."  After much questioning of what has happened the last few years, she identified the two triggers that caused POTS to rear it's ugly head. 

1.  Stopping running. 
&
2.  Going off of the pill. 
I have ALWAYS wondered about this!  In the back of my mind, the timing just always seemed to fit.

I explained to Bev that in the last 5-6 years, I have struggled with anxiety, panic attacks, and insomnia.  She told me that this was not simply, "anxiety attacks," and that most likely it was the tachycardia that was making me experience the panic, anxiety, and insomnia.  My autonomic nervous system was already "off," but it did not truly "crash" until I stopped running and went off the pill.  

Why did stopping running trigger my POTS?

Since my blood vessels do not squeeze and pump my blood properly, my body has always relied on my muscles; especially my toned leg and stomach muscles from being a lifelong athlete, to make up for the blood vessels not working properly.  When I stopped running, thinking giving my body rest would help my body heal, I lost the muscle tone that was helping pump my blood so out came my POTS. 

Therefore, it was explained that it is absolutely critical to get these muscles as strong as I can again.  However, because of how POTS is affecting me and because of the exercise intolerance and fatigue it causes, it is something that is slow going, and something I must work up to.  Bev did say it is good that I no longer run, because of the EDS. 

She shared with me that she has been a serious runner all her life and it would be devastating if someone told her she had to go back to just walking.  I cried when she said this because she was explaining MY devastation.  She understood that my body is wired for physical activity after years and years of being so active and competitive.  She suggested that along with physical therapy, that I swim laps and work up to a spinning class.  She said if I am able to get to a point where I can spin, she thinks I could get that "runner's high" I used to feel.  Bev did stress that it is so important to listen to my body, stop with symptoms, especially dizziness, and to monitor my heart rate with my heart rate watch. 

Bev made it clear.  POTS will not kill me, but what could harm me is passing out, resulting in a possible head injury, so I need to know my body and learn to listen to what it is telling me.

Validation...

Of course I asked a million questions.  I told Bev that I have noticed that with my period, stress, fatigue, neck pain, and GI problems, my POTS gets worse.  I asked her if that made sense to her.  She said they all completely make sense, and really there are so many factors that can just throw the Autonomic Nervous System even more out of whack.

Then I brought this one up...(Sorry if it is TMI)  I told her there are days I have to urinate every 10 minutes.  Last summer when Brad, Andy, and I drove out to Grand Haven, Brad had to stop every 10 minutes (I am not exaggerating) so I could go to the bathroom.  I think we stopped 12 times.  I thought it was a UTI, but it wasn't.  This has been bugging me, especially when it happens and I am traveling or out in public.  Bev explained that that happens because my Autonomic Nervous System is not working like it should be. 

So then I asked about the hot flashes, and bursts of sweat that happen to me out of the blue.  I always thought it was hormonal.  But nope, again my Autonomic Nervous System.  Then I brought up the times Brad feels my feet and can't believe how ice cold they are.  Yup, you guessed it... Again, my Autonomic Nervous System not regulating my body temperature like it should. 

Hallelujah! I really am not crazy! 

I told Bev it took about 20 doctors to get a diagnosis.  She laughed and said, "Yup, that is about average.  Let me guess.  You were sent to a cardiologist.  They didn't find anything so you were sent to a neurologist.  They didn't find anything so your thyroid was tested.  That came back normal, so they handed you a depression scale."  Oh my goodness, I wanted to hug her!  I cried and couldn't believe how well she got it. 

Bev's suggestions for management...

Next we discussed the plan for managing my POTS based on everything we had talked about.  Bev told me to go off of the Florinef.  Florinef is meant to increase blood volume, and raise my blood pressure.  She explained that she does not think the blood pressure is a major "player" in my problems.  Plus with my family history of high blood pressure, and my high blood pressure readings lately, she wants me off of it.

Next, she wants me to increase the Propranalol to twice a day, since tachycardia IS a major player for me, and she thinks I am having problems with the Propranalol wearing off during the day.

In two weeks, she wants me to start a new med, Midodrine.  She explained that she thinks one of my biggest issues is my blood vessels not squeezing like they should, and Midodrine can help with this squeezing.  She explained that Midodrine is not long lasting so I will have to take it three times a day.  I am not to take it before bed, because if I lay down after taking it, it can raise my blood pressure too much.  Bev explained that the Midodrine is a part of the Ritalin family, which will also hopefully help with the brain fog I experience.  I am to wait two weeks because she wants to see how I do off of the Florinef and with increasing the Propranalol. Once I have a handle on these changes, I will start the Midodrine.  Bev explained it is important to know what works and what doesn't.

Bev was glad I am on Prozac since it can also help regulate the Autonomic Nervous System.

I am to strengthen, strengthen, strengthen so my muscles can help my blood vessels with circulation and pumping my blood to my brain.

As far as compression stockings, she said to experiment with wearing them and not wearing them to see if I see a difference.  Plus, she said she prefers waist high if I am going to wear them, not the thigh highs I am wearing, because when the blood pools, most of it pools in my stomach.  

Bev wants me to continue to lightly salt my food and drink 2-3 liters of water a day.  She did not feel that salt was a huge management tactic for me because, again, she did not think blood volume and my blood pressure were the main issues.  

Bev agreed that I need to get a medical ID bracelet with both EDS and POTS engraved.  

Bev is having me return in July to follow up with Dr. Grubb.     

Other points...

As far as progress and what I can expect, she said she doesn't have a crystal ball, but she is hoping if we can get the right management for ME, my POTS will improve.  Fingers crossed!  I told her I want to have a family and to go back to work!  She said they will do their best to try and get me there!

We talked about the inconsistency of my days, and she assured me that the inconsistency is completely normal when it comes to Dysautonomia.  Again, she reminded me that all of this TAKES TIME. 

As far as pregnancy goes, Bev said I could take the Propranalol and Midodrine if I did get pregnant.  She said that a lot of women don't have too many problems with POTS while pregnant, but again, she doesn't have a crystal ball.  Then there are still the issues of EDS and pregnancy and the genetics of it all. To be honest, at this point, Brad and I are getting more and more confused.  Where are these so called storks when you need them?!

Bev showed me a picture of Gumby and jokingly said, "This is you. (Because of EDS) I am willing to bet Gumby has POTS too."

Bev recommended the book, The Fainting Phenomenon, and she also sent me on my way with many articles about POTS, and POTS and EDS.  I will definitely be passing these on to my other doctors. 

I learned that humans are the only animal on the planet that have problems with Dysautonomia.  However, Bev said a patient once asked her about giraffes, and she said she still needs to ask Dr. Grubb about that :)

Well, I think that pretty much covers it.  After 2.5 hours with Bev, I can say I have a much better understanding of this crazy disorder called POTS.  I also came away with so many answers as to why my body is doing what it is doing.  I am very thankful for the opportunity to see Bev and that I will be seeing Dr. Grubb in three months.  Hopefully in the meantime, I will be able to improve with the meds and management tactics.  As with anything, time will tell!
.
Excited!  Are we there yet?

On the road again

Brad apparently didn't want his picture taken anymore

I sang this to Brad.  He loved it. (sarcasm)

Writing to Andy all about the world of sports

Article #1 that I was given

Article #2

Article #3

Friday, April 22, 2011

Five For Friday 4/22/11

1.  Medical Stuff:
  • 1 Day of PT~I did a new circuit that had me rotating through light treadmill work, light elliptical work, Body Gym squats, and toe raises...I also did arm and back strengthening, balance exercises and my PELVIC CLOCKS!
  • 1 Day of home Rehab.
  • I had prolo round 4 on Monday on my neck, upper back, mid back, and ribs.  I go back May 31st for round 5.
  • On Wednesday I went to Toledo to see Dr. Grubb's NP, Beverly, for POTS.  I am still working on this (long) blog post, but I will say that my appointment did not disappoint.  I left with a much better understanding of why my body is doing what it is doing, and hopefully ways to help better manage my POTS. 
  • I filled a prescription for Midodrine for POTS.  I don't start it for 2 more weeks though.
  • My open toe compression stockings just came in the mail!  As soon as I try them on, I will grace you all with a picture. I better make sure my toes are pretty first!

2.  I got a new ZEBRA mug!  It even has the cutest little zebra inside the mug.  It's from World Market, if you all want to rush out and get yourself one!





3.  Tuesday, I helped my Mom host a jewelry party.  I didn't move much from the sitting position, since it was the day after prolo, but I would say that the party was a success.  It was nice to see people I haven't seen in a while; especially school friends.  I still need to do my jewelry shopping since I gabbed the whole party.  We are closing the party on Monday.


I even made food for the party.  I was in charge of desserts so I made dream bars and fruit pizza.  Here's the fruit pizza, Allie.  Thanks for "holding my hand" while I made it by answering 1,456 questions by phone or text from Maryland while you were trying to work. xoxo 

4.  On Monday our front yard looked like this:



On Tuesday our front yard looked like this:



We have been needing to have this poor tree cut down for some time.  When the tree company came to look at it, they said it was crucial that we have it cut down ASAP, since it was so weak.  Therefore, we had them come the next day and they worked all day in the rain.  This made me suck up the fact that the extremely loud noise kept me from taking my usual much needed "day after prolo" nap.  They will be coming back soon to grind the stump.

I know it is safer for the tree to be cut down, but I will miss the shade it provided! Our house is gonna be quite a bit warmer this summer!

5.  On Sunday, Brad and I went to our friend's, Todd and Brandi's house, to celebrate their daughter Aubrey's 5th birthday.  It was hilarious watching the 5 year old girls play dress up, and chat like adults.  I love 5 year olds!  Thank you Todd and Brandi for including us!

Allie gets home tonight for Easter weekend!  I miss you Kritt, Jake, Cece baby, and Andy! Happy Easter!

"Pain can be endured and defeated only if it is embraced. Denied or feared, it grows." ~Koontz

Monday, I had round 4 of prolotherapy.  As I was getting ready to leave for Mishawaka, my friend Ila called to see if I was still coming because it was snowing.  Yes, SNOWING on April 18th. 

Sidenote:  Every time I have had prolo, it has snowed.  When I made my April 18th appointment, I made the comment to the receptionist, "Well, at least I won't have to worry about snow by then."  Mother Nature sure showed me. 


I told Ila, I was still coming and I would be there around 1:30.  If you recall, I met Ila through my blog.  She was a competitive gymnast, and was just diagnosed with EDS and Dysautonomia too.  She and I both share a love for Dr. Lavallee.  Since Ila lives in South Bend, she told me she would meet me at my appointment so we would finally get to meet in person.  I was stoked!  We had talked a few times on the phone and I was excited to finally put a face with the voice.  Plus, I was meeting another zebra who is living what I am living! 


My Dad took me again since Brad was going to take me to my POTS appointment in Toledo on Wednesday.  As usual, my Dad and I sang along to our favorite songs, and I realized I wasn't even nervous.  I guess I'm becoming a "prolo pro :)" 


I got to the office and Ila was in the parking lot waiting for me with the cutest pillow pet ever!  We hugged and it felt like I had known her forever.  We went into the office and I was called back right away.  I told Ila I did not mind if she wanted to watch, so Ila and my Dad went back with me.  My vitals were taken (blood pressure was high again...hmm), and then Dr. Cantieri came to get me.  Usually I love getting called back right away, but this time, I was a little bummed since it didn't leave much time for Ila and I to chat.  I didn't even have time to get a picture!  I guess that just means we will have to plan another get together that does not involve a doctor's office.


As usual, Dr. Cantieri and I started by talking about how I've been doing.  I told him my ribs felt better than last time, but I was still having some pain.  I also told him I was still having on and off neck pain and headaches.  Since it was my fourth visit, I asked what the plan was, since I thought I was only going to have four treatments.  Well, I must have misunderstood, because Dr. Cantieri explained that with an EDS patient, his rule of thumb is that we would know if prolo was helping after four treatments.  Since I have gotten relief, he recommended I come back in six weeks for a fifth treatment, and hopefully we would find that I would need less points prolo'd.  Plus he said, that would give me six solid weeks of physical therapy to continue strengthening, in hopes that I would experience even more relief with the prolo-PT combo. That made sense to me.


Next, Dr. Cantieri checked my progress on the physical therapy homework he had given me~glute firing, scapula work, and pelvic clocks.  Well, I am proud to report that I passed glute firing and scapula work with flying colors.  Dr. Cantieri was impressed.  He even said he noticed a lot better muscle tone in my upper back/scapula area.  Then came time for the pelvic clocks.  Let's just say I still have a LOT of work to do on those clocks.  For some reason, my pelvis has an awfully hard time finding 3 o'clock and 9 o'clock.  It's back to work on those!  I was given more exercises to work on, including more neck strengthening exercises.  Then I changed into the gown, so Dr. Cantieri could begin the injections. 


As usual, we went through the injection mapping.  The good news is I had a lot less points to inject on my right side.  The bad news is that still means I have a significant muscle imbalance problem that needs to continue to be addressed.  More PT homework for me! 


Dr. Cantieri began the injections while Ila went to work taking pictures.  When she had to leave, my Dad took over.  Dr. Cantieri asked me, "Out of curiosity, what do you do with these pictures?"  I told him I document everything on my blog, and I wanted to make sure I had prolo documented since so little is known about it.  He laughed and said, "That makes sense...I just always wondered what you did with all these fun injection pictures." Ha! I think he thought I was kinda twisted before I told him about the blog ;)


When Dr. Cantieri was finished, I followed my post prolo routine~Tylenol right away, I got dressed slowlllllly, I paid the bill, I scheduled the next appointment, and I got into the back seat, layed down, and supported my body with many pillows.  I had my pillow pet this time to lay on as well!  Thank you Ila!


I survived the ride home and took it really easy the rest of the night.  I ate my usual after-prolo meal of eggs and toast, and yes, I threw up like usual.  It never fails.  Again, I think it is just from the stress that is placed on my body.  By the next day, I was done getting sick.  As I layed on the heating pad the rest of the night, I couldn't help but wonder if it would be snowing May 31st when I return to Mishawaka.  Not much surprises me these days. 

The usual prolo snow...on April 18th

Daddy

Before shots

Mapping
Getting cleaned up

Prolo has begun

More mapping

Getting ready to sit up

4th round Done!


And Again

Bob always watches over me

After injections-fake smile, maybe? :)

I heart my new Pillow Pet
Prolo makes me lose it a little bit

Thursday, April 21, 2011

GOOSEBUMPS!

I get tears in my eyes and goosebumps all over my body when I read this blog post.  I have read it three times today.  This will be me one day in the near future.  It has to be!  I don't know you Lara, but thank you, thank you, thank you from the bottom of my heart.

http://larabloomeds.wordpress.com/2011/04/21/the-miracle-isnt-that-i-finished-the-miracle-is-that-i-had-the-courage-to-start/

Wednesday, April 20, 2011

Whew!

What a week so far!  Prolotherapy round 4 was Monday in Indiana, I helped host a jewelry party yesterday (what was I thinking the day after prolo?), and I was in Toledo all day today for the POTS appointment I've waited six months for...Tomorrow I have PT and then I will get to updating if I don't crash after therapy.  It's been a good few days, an educational few days, an emotional few days, a painful few days, and an exhausting few days...but again, a good few days.

I'm off to close out these last three days with MODERN FAMILY...Happy half birthday to me! Will post soon.

Saturday, April 16, 2011

You Just Never Know...

You never know who you will meet on any given day.  Better yet, you never know who you will come across that will have an impact on your life. 

On the way to Philly my Mom and I sat together on the plane.  You'd think this would be a good thing, but it was not.  I freak her out with my "Oh God's" "What's that noise?" "Are we going down?" 

On the way home it just so happened that my Mom and I sat apart.  Although I hate to admit this, I usually do better sitting next to someone I do not know, because I feel like I have to hold it together.  I can't be grabbing on to a stranger's arm every 2 minutes.  That could get me into big trouble. 

I was sitting in my seat on our tiny Delta plane trying not to hyperventilate, when an older gentleman sat next to me.  He said "hello" and started reading his newspaper.  After a few minutes, he put the paper aside and started chatting with me.  We small talked for a bit.  He told me he and his family were coming home from a vacation in Miami Beach and asked where I was coming from.  I told him Philadelphia, and then I decided to warn him that I hate to fly.  He patted me on the shoulder and assured me that he flies all of the time, and that we will be just fine.

Since we were flying into Detroit, he asked me if I lived in the Detroit area.  I told him I lived in Lansing and he told me he lived in Troy.  He asked if I went to Michigan State and I said, "of course!" and he told me he was on the faculty there.  I said something like, "Wow, then you have quite a commute everyday!"  He proceeded to tell me that he doesn't have to commute because he is a doctor in Troy, and the medical students come to him to learn and observe. 

(By this time we were in the air, but I was chatting so much, it wasn't even phasing me)

With that, I asked what kind of doctor he was.  He told me a rheumatologist.  As I heard him say that, I excitedly said, "So you have heard of Ehlers Danlos!"  He said yes, and that he treats quite a few EDS patients.  He asked how I had heard of it, and I told him I had it.  People around us, probably thought we were nuts, but he started pulling on my skin, and bending my joints.  He looked at my scars and asked me about my symptoms.  He said, "Yup, I'd say you have it."  

At this point, he said, "You can call me Sam, while I also introduced myself."  From there, he wanted to know everything.  How I got my diagnosis, what I am doing to manage it, the meds I am taking, the compression of my stockings, more about POTS, and if I think I will take the risks of getting pregnant one day ..."  I answered all of his questions, and realized that the tiny plane, was also getting the whole story.  Lucky them ;)

As I was telling him how doctors thought I had MS, and then Myasthenia Gravis at first, he told me that when he was twenty, he was diagnosed with Myasthenia Gravis.  To survive he has to take Mestinon 3-4 times a day, and at times huge amounts of Prednisone.   He went on to tell me that when chronic illnesses come into your life, you have choices.  You can give up or you can continue to find ways to live the life you want to live.  Dr. Sam told me, "Katie, it doesn't mean you have to give up the things you love.  It just means you have to be creative and find other ways to get to do them."  So true and just what I needed to hear.  I had tears in my eyes.

I made the comment that, "Isn't it crazy, that I would have never known you had Myasthenia Gravis, and you would have never known I had EDS and POTS, if we hadn't told each other?"  I said, we both look so healthy. 

I love what he said next. 

The wise Dr. Sam said, "But, really what is 'healthy?'  There may be someone with no illnesses who is 100 pounds overweight, smokes, drinks, and just lives in an unhealthy way.  And then there may be people like you and me who have life-long illnesses, which have made us change our lives to live in a much healthier way."  Hmmm, I never thought of it that way.  He was reinforcing what I always try to tell myself~that I still have my GOOD HEALTH. 

As we started to descend, we finished our conversation, talking about how important it is to find inspirational stories and people that help us continue to move forward.  I couldn't have agreed more.  As Dr. Sam got off of the plane, he wished me a lot of luck, and thanked me for teaching him more about POTS.  I thanked him for being one of my inspirational people.

As I met my Mom outside, she said, "Wow, you really were talking that man's ear off."  I told her all about Dr. Sam and our conversations....She couldn't believe it and said, "Ohhh, that makes a lot more sense.  I could only hear YOU, so I thought you were just telling that poor man everything about you and EDS and POTS.  Ha!  

I have been thinking a lot about that plane ride with Dr. Sam since I have been home.  It makes me think that Dr. Sam was brought into my life at that exact time and day for a reason.  I have heard Father Mark at mass talk about "Godincidences", instead of coincidences, and this just may have been one of my "Godincidences."

It really makes me believe in the truth of this quote I read a while back~

"Coincidences are God's way of staying anonymous." ~Unknown

Friday, April 15, 2011

Five For Friday 4/15/11

After a big week last week of Bob Seger and Philly, I knew I had to lay pretty low this week...Sunday and Monday I was a mess, but by Tuesday I was feeling a lot more human.  Hopefully these five won't bore you to tears...Especially since I have only a couple of pictures.  Everything on my computer was wiped out yesterday.  I still don't know why.  Sighhhhhhhhhhhhhhh...

1.  Medical Stuff: 
  • 2 days of PT.  Circuit work and elliptical work.  I tried to do the recumbent bike yesterday but I was "taching" too much (heart rate too high) so I had to stop.  At least I got in a good amount of strengthening before the POTS attack hit.
  • 2 days of home rehab.
  • I had my monthly appointment with Larry.  I turned in my Apollo 13 assignment, we talked about where I am at with my goals/progress, what to discuss with Dr. Cantieri on Monday and Dr. Grubb's NP on Wednesday, and we figured out a plan for my continuing physical therapy.
  • After going over my sources of pain, we realized that EDS is affecting my jaw.  It keeps popping and subluxing, giving me some of my neck and jaw pain.  I am to wear my mouth guard more, and watch it.  If it gets too bad, I can be referred to a doctor who only works on TMJ problems.  I have also heard you can have prolotherapy on your jaw.  Hmmm... 
  • Larry wrote me a prescription for a new pain med cream I had to have made at the compound pharmacy to help with spasms; especially in my neck (since I HATE taking muscle relaxers).  He also wrote me a prescription for open toe compression stockings!
  • The good news about open toe stockings?  They are open toe.  The bad news about open toe stockings?  They only come in opaque, not sheer like my other ones.  I guess beggars can't be choosers, right?  I am still waiting for them to come in the mail.

2.  I took my Grandma's painting to Michael's.  They told me they do not do art restoration, only framing, and if I wanted to have it restored, I would probably have to ship it to a museum in Chicago or New York.  This did not sound right to me, so I went home and googled "art restoration in Michigan."  I found ONE place~Frames Unlimited in East Lansing that said they restore art.  I took the painting there, and long story short, it is being shipped to a woman who works for the store who does their restorations.  I was told she will call me with a quote.  The man I talked to said to plan on around $100-$150 to have the background and my Grandma's signature restored.  Whoa, that was more than I thought, but as I thought about it more and more I decided it was worth it. I am now waiting on the woman to call and give me her figure so I can (hopefully) give her the green light.

3.  Yesterday, one of my best buds, Theresa came for a visit.  We originally had plans to try and go for a walk, but since she came after therapy on my "tachy" day, we just sat and gabbed since I was pretty wiped out.  We had a great visit nevertheless. Time always flies when we have our girl talks.

4.  Tonight, Brad went to his school's dance.  It was a tropical theme, so this is how he left the house...

 I joined in on the fun too before he took off...Makes me feel "summery"


Thank goodness for our tub full of "parrothead wear" for Jimmy Buffett concerts. 


5.  A few more randoms for the week..
  • I found I love the show Extreme Couponing.  Guilty pleasure. 
  • I got another awesome letter from Andy. 
  •  I am getting anxious about the week ahead of me.  Prolotherapy in Indiana Monday and my Dr. Grubb appointment in Ohio on Wednesday.  The price of gas can come down anytime now... 
  • I was notified yesterday by Google as I was uploading my Philly pics, that I had run out of space, and if I wanted more space, I had to pay for it.  I had no idea this is how it works...Apparently you are given 1 GB for free but once that it is used up, you must pay for more GB's.  I paid 5 bucks for 20 GB's. I didn't think that was bad at all. 
  • When Brad gets home from his dance tonight, it will be time for one of our absolute favorite shows. The Friday Night Lights season 5 premiere!  "Clear eyes, Full hearts, Can't lose!"  We have been giddy about it all week long. 

Thursday, April 14, 2011

Philadelphia

As you know, my Mom and I traveled to Philly April 5-9 to visit my older sister, Kristen, my brother-in-law, Jake, and my niece Cecilia.  The pictures I am posting pretty much sum up the trip.  We spent most of the time at Kristen and Jake's house just hanging out, which is just what the doctor ordered. 

On Wednesday and Thursday Kristen and Jake had to work so my Mom and I got to be Cece's "daycare."  So tiring, but so FUN.  On Friday, Kristen took the day off and Allie drove from Maryland for the day.  So what do you think the five of us girls did?  Lunch and shopping of course!  Saturday, it was already time to go back to Michigan. The trip went so fast.

I did pretty well with sickness.  I took a nap each day and at times needed to rest, but I hung in there.  When I got home I crashed for a couple days but now I am back on my feet and doing my usual things.


Cecilia Jane is a 10 month old busy bee, always on the go.  Her temperament reminds me of my younger sister, Allie.  She is usually pretty intense and serious, but when she gives up those belly laughs and smiles, it is the best thing in the world.  I hadn't seen Cece baby since Christmas so she had changed a lot!  Here's some "Cece facts" from the 4 days I spent with her...
  • She says "Ma-Ma, Da-Da, and "Dis," as in "give me "dis."
  • She loves her play kitchen and her board books.  Especially Pat the Bunny, That's Not My Dragon, and Peek a Who?
  • She still loves the baths her Daddy gives her every night.  She does not love to have her teeth brushed.
  • She hates having hats on her head now :(
  • She eats all sorts of people food.  While we were there she LOVED toast, spinach lasagna (see pics), sweet potatoes, yogurt, applesauce, pretzels, puffs, and bites of Grandma's Italian Ice from Rita's.
  • She HATED green beans.  Hear that Kritt?
  • She doesn't normally watch TV, but Aunt Katie introduced her to Yo Gabba Gabba.  She loved dancing to the songs. 
  • She was almost walking.  The day after we left we found out she took 5 steps on her own!  I guess all the prep work Grandma and Aunt Allie did with her paid off.
  • She loves laundry basket rides given by her Aunt Katie and Aunt Allie.
  • She loves to get crazy with Aunt Katie, cuddle with Aunt Allie, but when it is time to just "be," she is Grandma's girl for sure! 
  • She loves to hang upside down.  Gymnast, maybe?
  • She has 7 teeth and counting!
  • Her hugs and snuggles are the best.
  • She loves to drop things and make you pick them up.  Over and over and over...Cece thinks this is pretty funny.
  • She is a fashionista plain and simple.
  • When she is done she is DONE!
  • She likes to dance to the "ABC song."  She also loves "If you are happy and you know it."
  • She claps and claps; especially after the "how big are you" game.


I love to play hard in my room with Grandma

I'm definitely Grandma's Girl

I like to eat pretzels and just chill out
Look at me stand up like a big girl

My Daddy is the best

My Aunt Katie tells me I am gorgeous
Stop feeding me people. I can do it by myself!

I wear shoes now.  They're okay~I tolerate them
"Aunt Katie, I don't think I'm supposed to sit up here"


But I kinda like it.

Spinach lasagna is the best thing EVER

It's fun to eat AND play with

When I love something, I rub it in my hair (really). My Mom is surprisingly calm about this.

Mmm, a spinach worm!
Yum

"Grandma, my belly is full and I need a bath ASAP"


I love to be outside
 
Grandma makes everything better

I'm just posin' with my Aunt Katie

Grandma had me walking...

and walking...

and walking!  Look at me go!
Aunt Allie was one of my walking coaches too
When I got tired I would sit and play with Aunt Katie

She kept flipping me around.  I think I want to be a gymnast Mom and Dad

I love things I'm not supposed to have


I really miss my Uncle Andy.  I am so proud of him.


I can't wait to see you Uncle Andy!  I love you! (Aunt Katie finally gave in and spelled my name how my Mom wants it to be spelled)

When Allie came we HAD to go to lunch and to the mall.  Rain or shine.

See the look Aunt Allie gives Aunt Katie when Aunt Katie is annoying her.  Be nice Aunt Allie!


I love to show people how big I am.  Especially at Uno's Pizzeria.


Aunt Allie feeds me Oyster Crackers.  Mmm Mmm Mmm


Of course we had to get a picture with all of the girls!


When Aunt Katie and I got tired at the mall, we would play on the bench.  Aunt Katie's really happy because the mall had an H & M

Then Aunt Allie would join us while Grandma and Mom just shopped, and shopped, and shopped for new clothes for me.  My closet is so jam packed but a girl can never have too many clothes


Aunt Katie and Aunt Allie insist I wear bows.  I don't think I like them!


Well, maybe they're not THAT bad

Aunt Allie makes me laugh so much


Aunt Allie and Aunt Katie like to give me laundry basket rides.  I have to hang on tight!

Laundry basket rides are the BEST!

My Aunts and Grandma are about to leave.  I better start blowing them kisses

I had last minute snuggles with Aunt Katie
And with Grandma

I was sad to see them go but I will see them real soon.  Now I am back on my schedule and my Mom, Dad, and I are back to being a beautiful family of three!