Five For Friday 12/31/10

1.  Medical Stuff:  2 days of PT this week, had T-9 and T-10 nerve block injections, saw Dr. Rosen, scheduled with Dr. Lavallee and the POTS cardiologist in South Bend. 


2.  Ms. Margaret (the best assistant teacher ever) came to visit and brought me Glee love songs! We both share a love for Glee.


3.  Had one of those days on Wednesday that just kept getting better and better.  Everywhere I turned, things fell into place and I found out more great news.  Gotta love those kind of days.


4.  After going to lunch at Champps with Mom, Jake, Cecilia, and Kristen, I put Cecilia in the sink and we played with paper cups for over an hour.  She loved the mirror and we had such great one-on-one bonding time. I already miss her so much. 

The only picture I got of me and my lovey.

5.  New Year's Eve!  We are headed to the Gooley's house in Grand Ledge for their annual NYE party.  Should be a blast like always.  Can't wait to see what I am gifted with during the famous white elephant exchange. 

Our buttered bread and money are all set to ring in the New Year.  This is a tradition from my Dad's upbringing, that has been carried forward with us.  My Dad has always taught us that on every New Year's Eve you leave buttered bread on your table, and you leave money outside all night long. The buttered bread is to ensure that in the new year, we will always have enough food to eat, and the money is to ensure that in the new year, we will always have enough money to live our lives. 

As many blessings as 2010 has brought, I'm not gonna lie~I am ready to embrace the "newness" of 2011, and see what it has in store for us! 


Happy New Year everyone!  May your 2011 be filled with love, happiness, and health!

Ehlers-Danlos Round Two

I spent much of the day today on the phone with doctors from South Bend, Indiana.  After I returned from seeing Dr. Tinkle, I talked everything over with Larry and we agreed that it would be best to get a second opinion about my neck, prolotherapy, and the overall management of EDS.  Dr. Lavallee is a sports medicine doctor in South Bend who also specializes in EDS.  He is not only an expert in EDS, but he also has it himself.  When I was first researching EDS specialists; three doctors kept coming up as THE EDS doctors to see-Dr. Tinkle, Dr. Lavallee, and a doctor in Maryland. 

Here is more info on Dr. Lavallee:

http://www.ednf.org/index.php?option=com_content&task=view&id=194&Itemid=64

and

http://www.qualityoflife.org/memorialmedicalgroup/physicianBios/Lavallee%20bio.pdf

Since it was already planned that I would be going to Mishawaka, Indiana (close to South Bend) to see a doctor about prolotherapy on January 18th, I decided to try and get in to see Dr. Lavallee on the same day.  Today I spoke to Dr. Lavallee's nurse at length about my EDS, history, and what I have done for it thus far.  She said she would speak with Dr. Lavallee and they would see what they could do about getting me in on the same day. 

Not even an hour later, my phone rang and it was Dr. Lavallee himself.  I spoke to him for 20 minutes about my history, and what has been going on.  He said he would make me his last patient on the 18th (at 1:00) so he could spend a lot of time with me.  He said he needed me to do a few things before I come:  type up a 1-2 page summary about how I've progressed, gather my POTS records, pain management records, Dr. Tinkle records, MRIs and X-Ray reports, and Larry's records.  He wants me to mail them to him ASAP so he can study up before he sees me. 

Then he asked if he was able to get me in, if I would be willing to see the cardiologist that he sends his EDS/POTS patients to, while I'm there.  I jumped at the chance to see a doctor who specializes in POTS since I feel like this has been the weak piece of the puzzle as far as my understanding of the POTS, and the best ways to treat it...I also was eager to take him up on the offer while I wait until spring to see Dr. Grubb's nurse practitioner. 

The nurse called me back a little while later and said they were able to get me into the cardiologist that day as well.  Score! January 18th will definitely be a longgggg day, but hopefully a very productive day.  I will see the prolo doctor at 10:30, Dr. Lavallee at 1:00, and the cardiologist at 3:30. 

Now I will pray for no snow storm on the 18th, and that all appointments stay on schedule. 

On to getting my millions of questions together and wondering how I will fit my summary into 2 pages?  I'm thinking bullets will be the way to go.  

What is the purpose of life?

I had a beautiful phone conversation this morning that reminded me of this man. 

Christmas

Two years ago Allie almost died on Christmas night and my Dad had Prostate cancer. You can read Allie's story here.  Christmas has meant so much more to me ever since.  It probably sounds cliche' but between Christmas two years ago and this Christmas I finally get it. Like really, really get it. Christmas means Family.  Friends.  Forgiveness. Giving.  Love. Hope. Faith.   

I have always had this thing where I like to think in years.  For example, my family used to go to Lake Leelanau every summer, and I always remember thinking each year as I layed out on the dock, baking in the sun, where I ,and my family would be the next year we were at Lake Leelanau.  This year, as I sat in church on Christmas Eve, I found myself doing the same thing.  I could not help but think that last year at Christmas I was working and running. And I wondered where I would be by next Christmas.  So much has changed for me in the past year, and I know that it is inevitable that so much more will continue to change in the upcoming year.  As we waited for mass to begin, my mind drifted to the possibilities...Would I be back to work?  Would surgery be in the works?  Would we be in the midst of the adoption process?  Would I be able to walk around the block again? 

If you asked me in years past what my favorite gift from Christmas was, I would have rattled off my new Ipod, my new boots, a new watch, or the expensive sweater I didn't want to buy for myself that I waited for Santa to bring.

This year a friend of mine asked me what the best part of Christmas was for me this year.  Without hesitating, I immediately said, it was the fact that Brad and I got to spend Christmas Eve mass at St. John's Evangelist in Jackson with Father Jim (who married us and who was the priest from my childhood that knew my family so, so well), as the Christmas Eve officiating priest.  I explained that my most special gift of Christmas was that I was able to walk up to get communion, something I have not dared to do since I've had POTS, for the fear of passing out in front of the whole congregation.

When I saw that Father Jim was officiating, I lost it.  I mean, really, really lost it as in Brad making me use his beloved Adidas glove to wipe my constant stream of crocodile tears.  I'm still not sure why I became so overcome with emotion as I laid my eyes on Father Jim.  I have talked before about symbols of hope for me, and I think Father Jim is a symbol of hope and comfort for me.  As Lisa would say, he may just be one of my angels with skin.  

There were other things that made Christmas so special for me this year.  Cecilia's first Christmas.   Spending Christmas Eve with all of the Jaskolski's and experiencing my first ever Polish feast.  Watching all of my nieces experience the magic of Christmas.  Being with my whole family, laughing, and loving each other up Christmas morning.  A card I opened from my sister-in-law on Christmas Eve filled with words of love and hope.  The necklace I was given by my sister that she had made for me that says, "health, faith, courage" with footprints charms (from the footprints poem). Being with the Herners on Christmas Eve night and watching Katy Rose so enthralled by changing her new doll's diaper.  The santa bag that was in our door when we got home Christmas Eve night, full of inspirational gifts from a former student and his family.  An Angel pin I opened Christmas morning.  The Christmas Brad and I had together, just the two of us.   

I have always resisted change.  Change was never my friend.  When my Mom painted my bedroom after I moved out and got married I was mad about it for days.  But there has been a lot of change from Christmas 2008, to 2009, to 2010.  It has been presented to me time and time again this year that change in life is inevitable.  I have changed a lot this year.  And I'm beginning to think, it's not so bad.  What will Christmas 2011 bring?  I am so hopeful.

Five For Friday 12/24/10

I'm going to keep this one short and sweet with longer Christmas posts to come!

1.  I'm cheating and putting the medical posts into one:  Went to Fort Wayne and had facet injections into C6/C7 in my neck. Started physical therapy again.  My first session was focused on the soft tissue in my neck and back (aka a massage).  The plan for physical therapy is toning work with soft tissue work.  Made an appointment with my OB-GYN to talk about starting a new birth control to hopefully help the EDS by making me less stretchy during my time of the month.

2. Got my hair done.  I was talking to my stylist about my eyebrows and how they are changing color (orange hairs).  I told her it was bugging me, and as she waxed my eyebrows, she said she, too, noticed it.  She said maybe it's because of a medicine I'm on, or because of all the medical craziness.  So she colored my eyebrows for the first time at the same time she was coloring my hair.  When I got home I was telling everyone at dinner about it and how I could not figure out why my eyebrows were turning orange.  I asked if it was the process that hair goes through when they turn gray.  Allie looked at me with her "OMG, are you serious" look and said it was because of my face wash (Acne Free system) since it has benzoyal peroxide! Ha!  Mystery solved!  They are not turning gray.  Phew.

3.  Allie, Kristen, Jake, and Cecilia arrived last night!! Enough said.

4.  My Mom, Dad, and I played a couple good games of Sequence, while we waited for my siblings to arrive.  My Mom always wins.

5.  Went to Spring Lake to celebrate Cami Rose's (my niece's) first birthday at her monkey-themed party!

Off to get in the shower~Big day ahead.  Christmas Eve with the Jaskolski's in Grass Lake!  Merry Christmas Eve friends and family! 

Kindness

My principal emailed me, "The Cab Ride," this morning.  It seemed appropriate to share on Christmas Eve-Eve, to be reminded what matters in this world.  As I thought of all of the random acts of kindness that have been bestowed on me the past year, my New Year's resolution is to definitely try to pay these acts of kindness forward.  I've learned the smallest gestures can make the biggest impact.

The Cab Ride I arrived at the address and honked the horn. after waiting a few minutes I walked to the door and knocked.. 'Just a minute', answered a frail, elderly voice. I could hear something being dragged across the floor. After a long pause, the door opened. A small woman in her 90's stood before me. She was wearing a print dress and a pillbox hat with a veil pinned on it, like somebody out of a 1940's movie. By her side was a small nylon suitcase. The apartment looked as if no one had lived in it for years. All the furniture was covered with sheets. There were no clocks on the walls, no knickknacks or utensils on the counters. In the corner was a cardboard box filled with photos and glassware. 'Would you carry my bag out to the car?' she said. I took the suitcase to the cab, then returned to assist the woman. She took my arm and we walked slowly toward the curb. She kept thanking me for my kindness. 'It's nothing', I told her.. 'I just try to treat my passengers the way I would want my mother to be treated.' 'Oh, you're such a good boy, she said. When we got in the cab, she gave me an address and then asked, 'Could you drive through downtown?' 'It's not the shortest way,' I answered quickly.. 'Oh, I don't mind,' she said. 'I'm in no hurry. I'm on my way to a hospice. I looked in the rear-view mirror. Her eyes were glistening. 'I don't have any family left,' she continued in a soft voice.. 'The doctor says I don't have very long.' I quietly reached over and shut off the meter. 'What route would you like me to take?' I asked. For the next two hours, we drove through the city. She showed me the building where she had once worked as an elevator operator. We drove through the neighborhood where she and her husband had lived when they were newlyweds She had me pull up in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl. Sometimes she'd ask me to slow in front of a particular building or corner and would sit staring into the darkness, saying nothing. As the first hint of sun was creasing the horizon, she suddenly said, 'I'm tired. Let's go now'. We drove in silence to the address she had given me. It was a low building, like a small convalescent home, with a driveway that passed under a portico. Two orderlies came out to the cab as soon as we pulled up. They were solicitous and intent, watching her every move. They must have been expecting her. I opened the trunk and took the small suitcase to the door. The woman was already seated in a wheelchair. 'How much do I owe you?' She asked, reaching into her purse. 'Nothing,' I said 'You have to make a living,' she answered. 'There are other passengers,' I responded. Almost without thinking, I bent and gave her a hug. She held onto me tightly. 'You gave an old woman a little moment of joy,' she said. 'Thank you.' I squeezed her hand, and then walked into the dim morning light.. Behind me, a door shut. It was the sound of the closing of a life.. I didn't pick up any more passengers that shift. I drove aimlessly lost in thought. For the rest of that day, I could hardly talk. What if that woman had gotten an angry driver, or one who was impatient to end his shift? What if I had refused to take the run, or had honked once, then driven away? On a quick review, I don't think that I have done anything more important in my life. We're conditioned to think that our lives revolve around great moments. But great moments often catch us unaware-beautifully wrapped in what others may consider a small one. PEOPLE MAY NOT REMEMBER EXACTLY WHAT YOU DID, OR WHAT YOU SAID ~BUT~THEY WILL ALWAYS REMEMBER HOW YOU MADE THEM FEEL.

Had to Laugh

For all my fellow EDS'r/POTSie peeps, I came across this and had to laugh. 

All I have to say is thank goodness I am past much of this stage!   

Happy Holidays EDS'rs and POTSies! Your endurance is inspiring :)

Breathe In, Breathe Out

WARNING:  What you are about to read is not full of positivity.   

 I promised the good, the bad, and the ugly, and today is just one of those days where I hope getting it out in writing will give me a dose of therapy I need.

Overwhelmed. With. Life.  That pretty much sums it for me.  I hit a wall yesterday and Brad ordered me to bedrest today.  I think I experienced yesterday what Dr. Tinkle was talking about when he said Type A people usually struggle the most.

Because I love the Christmas season and everything that goes along with it, I have been forcing my body to keep up with the hustle and bustle of the season.  I have expected my body to be able to do what it usually does at Christmas time which is go, go, go.  I was managing okay until yesterday.  The neck pain and instability got so bad I was soon crying my eyes out while laying on my parent's floor because the headache that goes with the pain and instability was so intense.  And then the puking started.  The headache was making me so nauseous that I could not stop throwing up.  Secretly, I think the puking was Dr. Tinkle whispering in my ear, I told you so. 

So today I am laying here, obeying my body and my husband, wondering how it will all get done.  I do not like the fact that my body is winning.  It used to be so simple~I would tell my body what I needed it to do and it would listen.  I HATE that I have to slow down and I HATE that I have to miss out on things.

As I am laying here on my massage pillow, I am wondering how I will get to the store to get that stupid can opener and the Spartan hat for Brad's stocking, and how everything will get wrapped. 

The having a family issue is on my mind all of the time, and how that will ever work out. 

I am thinking a lot about scheduling a consultation with the neck surgeon just to see what he says and that is so scary to me. 

I started physical therapy today, and although that is a GREAT, I am worrying about how I am going to get to and from therapy on my bad days. 

I am worrying about the tingling I am getting in my hand when I move my head a certain way.

I am stressed that it takes so long to get into Dr. Grubb. 

Most of all, I think I am realizing that EDS is here to stay and POTS is not going away anytime soon. 

I am angry at POTS and EDS today.  I am letting them win, and I don't like it.  That is not like me. 

This is the kind of day I have to dig deep, find my gratitude attitude, and realize it's not so bad.  I need to read Lisa's book, gain some perspective, and remember the reason for the season.  It really is not about can openers. 

While Brad's favorite saying is, "It is what it is," I will use my new favorite saying that it so fitting for the inconsistency of POTS and EDS: THIS TOO SHALL PASS.  And I will count the days until I see Dr. Rosen again......7.

Five For Friday 12/18/10

Forgive me, I'm a day late.  Had a yuck day yesterday-all hurricanes going at once; POTS, neck, Migraine, GI...Was on the massage pillow and heating pad most of the day and in bed at 8:30...Hopefully today will be a better day.


1.   Larry had me meet with a doctor from Minnesota who was in town for the weekend teaching at the MSU College of Osteopathic Medicine, Principles of Manual Medicine Course.  He spent an hour Sunday and an hour Monday doing visceral manipulations on me.  AND, his wife and daughter both have EDS! Visceral Manipulation is a type of gentle manipulation that helps relieve imbalances and restrictions in the interconnections between the motions of all the organs and structures of the body. (I took that from http://www.jeffreyburch.com/home/jb1/visceral_main.html).


2. Theresa and I made Buckeyes!  I have always wanted to learn, but now I am not so sure I wanted to know exactly how much sugar, butter, and peanut butter goes into making them.  Nevertheless, they are still
one of my faves, and I can still justify eating them since they are a good source of protein, right :)

Not the prettiest, but they still taste good!

Buckeye Bags for Brad's Co-Workers and our Neighbors

3.  I went to the Dentist.  Still no cavities, but I must get better at flossing!  I had more bleeding in my gums, which is also connective tissue, so I must do a lot more preventative care so that EDS does not invade my mouth!  My dentist copied the dental pages from Dr. Tinkle's book.  I appreciate a doctor who is always willing to learn!

4.  Andy took me to Angola to see the spine doc.  The next step is facet injections into my neck (in hopes to calm the joints, and therefore the muscles down) and another T9/T10 nerve block.

5.  I received the records I needed to fax to Dr. Grubb's office to get scheduled for an appointment for the POTS.  I faxed them yesterday, got home, and called to make sure the office received them.  The lady said she did and she will be calling me in February to set up an appointment to see the nurse practioner in March, or she will call me next November to schedule an appointment to see Dr. Grubb next December if I'd rather.  Is it me, or is that just crazy to have a year wait!  I think Dr. Grubb needs to clone himself.  I told her I would definitely like to see the NP in a few months. 


I just realized that was a lot of medical stuff, but that pretty much sums up my week!

Ehlers-Danlos in Cincinnati

Well, I have been putting this post off because I knew it was going to be a long one.  One with a lot of information; some of which I honestly did not want to hear.  Since my appointment last Thursday, I have been mentally processing a lot of the information I learned at my appointment with Dr. Tinkle. This "processing" has led to a few mental breakdowns emotional moments, and I felt it was best to blog about it when I was feeling much more positive and ready to break it all down in writing. 


So this is the morning.   


I started out the day at the physical therapist's office.  Dr. Tinkle likes to send his Ehlers-Danlos patients to a physical therapist first to learn how to best tone muscles and protect the joints to achieve joint stabilization without stressing or damaging the joints more.  In EDS, the joint ligaments are too lax, which creates instability in the joints, which leads to pain.   I spent two hours with a therapist, who was kind enough to allow Brad to video tape me doing each exercise.  A lot of the exercises she said I needed to focus on were for my back and neck instability.  Paired with knowing I also had POTS, we did a mixture of exercises that required standing and sitting.  A lot of the exercises involved a medicine ball which I will be investing in for home use.  Besides learning certain exercises that will hopefully help me with joint stabilization and protection, the key to doing physical therapy, or any activity for that matter with Ehlers Danlos was definitely ingrained into my head: EVERY EXERCISE OR ACTIVITY IS TO BE DONE MID-RANGE.  Exercising to full flexion and extension is a no-no.  Carrying grocery bags with my arms hyper-extended is a no-no.  Standing with my knees locked is a no-no.  This is something I will have to train myself to do.  As a gymnast for 14 years, everything was always carried out to full extension, so this will be something I will need to constantly pay attention to until my body is retrained.  I left the physical therapy session with many exercises that I will bring back to my physical therapist at MSU to tackle. 


A few hours later it was time to see Dr. Tinkle.  So before I go into all the nitty gritty details, I do not think I ever explained what Ehlers Danlos is. 

Ehlers-Danlos is a genetic condition, so I have had it since birth.  I either inherited it from my Mom or my Dad, which we are not sure who, because whomever has it has been asymptomatic.  I am willing to bet my Dad has it though because ever since I can remember my Dad has been able to put his legs behind his head.  I will probably never know which side it came from, and really, at this point, does it even matter? 


Hopefully I will explain this accurately, but please keep in mind I am not a doctor :) Ehlers Danlos is a connective tissue condition that causes a defect in the synthesis of collagen.  Our whole body is made up of connective tissue; it is like the glue that holds our bodies together.  Therefore, muscles, ligaments, blood vessels, the skin, the stomach, the visceral organs, and pretty much any body system can be effected.  Basically since there is a defect in collagen, my EDS body is too stretchy, which is why I have had major issues in the last year, feeling like my body has been coming "unglued" or like what used to feel tight and stable, now feels extremely unstable.  For me, my back, GI tract, hips, and neck have been effected the most, but each EDS person is different as to how they are effected.  Also, my autonomic nervous system has been effected, causing the POTS (Postural Orthostatic Tachycardia Syndrome).


There are six different types, but I really only know about the first 4 types.  Type 1 includes extreme skin involvement (slow wound healing, easy bruising, abnormal scar formation, stretchy and smooth skin) and joint hypermobility.  Type 2 includes mild skin involvement and joint hypermobility.  Type 3 is extreme joint hypermobility.  Type 4 is the vascular type which is the most serious type.  Many people do not live past 50 with type 4.  I have been diagnosed as either a type 2 or type 3.  I definitely have the extreme joint hypermobility but both geneticists I have seen have both agreed that I have some skin involvement (I have a couple scars that have opened up a little, I have smooth and mild stretchy skin, and I bruise easily). 


So how was my Ehlers Danlos diagnosed?  For me, and again, I can only speak about my experience, I was asked to pull skin away from my neck and elbow.  My scars were examined.  And I was given the Beighton Scale which tests hypermobility.  There are 9 points on the Beighton Scale and I scored 9/9.  Overachiever, huh?  One thing I could not do was touch my tongue to my nose so of course I am working on that :)


Below you will find the Beighton scale.  So paired with the scale, my skin, and a few other markers such as my palate, my symptoms, my POTS which is found VERY commonly in EDS people, my flat feet, and certain bumps that I have on my feet that are markers of EDS, a diagnosis of type 2/3 EDS was confirmed by the Fort Wayne geneticist and by Dr. Tinkle, the geneticist in Cincinnati. 

Let me just say that my appointment with Dr. Tinkle did not disappoint.  He is obviously very passionate and knowledgeable about what he does, and he is really committed to helping his patients.  My appointment was at 3:30 and Brad and I left the office at 6:30.  I learned so much and it was such a breath of fresh air to have a doctor really, really GET what I was talking about.  When I left, he told me he wants to know how I am doing and to send him email updates about what is happening and any questions I have.  He said patients usually come back yearly but he can help from afar with issues that arise.  I would tell anyone who has EDS to make the trip to see Dr. Tinkle because he obviously fully understands the complexity of the disorder (including the POTS relationship with EDS).

Here are most of the issues we talked about. It was much easier for me to spilt the info into categories.

 Why do I have so many GI issues?

The POTS (dysautonomia) and the EDS both effect the GI tract.  The POTS causes an abnormal amount of blood flow to my stomach for digestion, while the EDS also causes my stomach to be too stretchy as well.  Dr. Tinkle said a lot of my symptoms present as a hiatal hernia, which is common in EDS patients.  In a hiatal hernia, the connective tissue around the diaphragm becomes too stretchy and therefore the diaphragm becomes weakened.  So then the stomach is able to pass upwards into the chest cavity which creates all sorts of GI issues.  So even my stomach is hypermobile.  We discussed that taking something for acid should help some of my symptoms as well as eating smaller meals more frequently should help.  The smaller meals will help my stomach empty faster and the stomach will not need as much blood flow to digest the food if not a lot of food is in the stomach to begin with. 

What should I do about all of the instability in my joints?

Physical therapy is key to toning many of the muscles, so that I can return to being active.  EDS people must find ways to be active without hyper extending or damaging joints further to keep muscle tone.  In EDS there is nothing wrong with the muscles themselves so it is extra important to have the muscles as toned as possible since they have to work extra hard to hold the body together. Suggestions include water activities, walking, Pilate's, and cycling. No more running :(

Because the muscles work overtime, they are often spasming and feel hard as rocks (which is a major problem I have).  Massage therapy was ok'd as well as chiropractic care for any area of my body besides my neck. 

So that brings me to my neck...

Why the cervical collar and what about the neck instability?

The fact that the cervical collar reduces my symptoms, helps keep my head up, and reduces my headaches, along with the fact that I have a resolution of symptoms with neck traction seems to show that I am having cranial settling and cranio-cervical instability because of the weakened connective tissue (I think).  The top two vertebrae (C1 and C2) are moving too much and the ligaments are too lax.  Dr. Tinkle explained that I can try all the conservative treatments: pain management doctors with injections, physical therapy exercises, and continued use of the collar, but it is his experience that all of his patients with the same issue have been able to resolve the instability and symptoms with a C1/C2 fusion surgery only.  He wants to refer me to a neurosurgeon in Cincinnati who also understands EDS for a consultation to see what he thinks about a C1/C2 fusion.  So I pretty much got the idea that to ditch the collar for good, surgery is in my future.

This was item #1 I was not so thrilled about.  I told Dr. Tinkle this and that it scared me to death and he definitely understood.  But I came for information from the expert, and information is what I got.

What did he think about prolotherapy?

First of all prolotherapy "uses a dextrose (sugar water) solution, which is injected into the ligament or tendon where it attaches to the bone. This causes a localized inflammation in these weak areas which then increases the blood supply and flow of nutrients and stimulates the tissue to repair itself." The hope is that it tightens the weakened areas up, providing more stability (Thank you Prolotherapy.com).

Dr. Tinkle pretty much said that it is still unknown if prolotherapy will help Ehlers-Danlos patients.  He said it seems to him that it would be more beneficial for the joints that are not meant to move as much like the ribs or the tailbone.  He explained that it is expensive, since insurance does not usually cover it but if I wanted to try it, to go for it...EXCEPT in my neck.  It was clear that he did not think it was a good idea to stick the needles in my neck. 
(Something else I was bummed to hear because I was hoping that he would have said that prolotherapy would be something less invasive than surgery, that could help). 

Why POTS and EDS?

Basically, it is my understanding that the abnormal connective tissue causes the blood vessels and veins to become stretchier so it becomes harder for the vessels to maintain the right amount of pressure to constrict in order to push the blood back up to the heart and brain normally when standing.  Dr. Tinkle reiterated that it is important to get into Dr. Grubb in Toledo since he not only is an expert in POTS but how POTS and EDS play into each other.  So I will continue to make it my mission to get into Dr. Grubb and/or his nurse practitioner Beverly. 

What about diet and supplements?

The only thing Dr. Tinkle stressed was to take a multi mineral. 

What about hormones and EDS?

Dr. Tinkle said there is a definite relationship between hormones and EDS, and it makes sense that I hurt more and sublex more when I have my period.  He explained that both estrogen and progesterone have an effect on collagen, and he suggested I go on a certain type of birth control that helps regulate my hormones, which would hopefully make me less "stretchier" at my time of the month.  It was interesting that he explained that men with EDS hardly ever have symptoms, and they know it has to do with hormones.  Testosterone seems to help men with stability (which if my Dad has it, may be one of the reasons why he has not had problems).

What about Pregnancy and EDS?

Dr. Tinkle started out by saying that there are a lot of complications with pregnancy.  Since I have POTS, with pregnancy the POTS gets worse, which can not only be dangerous to me but also to the baby.  Then with EDS, because you get stretchier anyways with pregnancy, this is not good if you already have a problem with being too stretchy.  He said people with EDS do choose to get pregnant and have babies, but there are some things I must really understand first. 

If that is what Brad and I were to choose, he would harness the heck out of me; hips, pelvis, belly, etc.  The extra weight would most likely cause more damage to the joints.  I would have to count on being on bed rest for AT LEAST the last trimester.  So because of the bed rest, all of the muscle tone I would have worked my butt off to regain through therapy and being active would disappear, resulting in my body being a mess again after the baby.  He then explained that after the pregnancy, not only would my body be a mess but I now would have an infant to care for.  He also explained that because I have EDS, our child would have a 50% chance of inheriting it. 

Sigh.  That's a lot to consider and I'm just gonna leave it at that for now....and say again, Santa, I would like a surrogate for Christmas.

I asked about work, and if he has teachers who work with POTS and EDS?

Dr. Tinkle said he has one teacher; a music teacher, that chooses to work.  But that is all she does.  All her nights and weekends are spent recovering.  He stressed that part time jobs usually work best if I can swing it, and working usually requires some doctor ordered job restrictions. Double sigh. 

But I have to keep in mind that he is talking about one person, and everyone is different so that is not to say I won't get to the point of being able to work again, right? He did say I have a LOT of work to do, and management is not a quick fix.  But I definitely have hope.

I asked what else helps...

Other ways to manage EDS and POTS Dr. Tinkle explained include antidepressants because of the effect they can have on the Autonomic Nervous System and pain (He likes Cymbalta).  Other things he mentioned include, a good pain management doctor,  acupuncture, and to have my other doctors communicate with him.  I love that Dr. Tinkle said he would talk to any doctor, therapist, etc about any questions they have, and that he would rather talk to them directly than for me to try and explain something that may be confusing.

I asked why at 28, did everything fall apart if I have had EDS all my life.

Basically Dr. Tinkle explained that the fitness I enjoyed all my life through gymnastics and running kept my muscles in good shape but damaged the joints so once I stopped running, the muscles lost their strength and tone and everything fell apart.

Other interesting points... 

I find it funny that many of the doctors I have seen in the past year have commented on my Type A'ness.  Maybe it is the tabbed binder I bring to each appointment, or the audio recorder, or my long list of questions that clue them in on this personality trait of mine... Well, Dr. Tinkle also brought my type A personality up, and said that Type A people often struggle the most with POTS and EDS, because they push and push their bodies to keep going despite pain and sickness, and then pay for it more later.  He wanted me to be aware of this, and that it is so important to listen to my body and find ways to slow down.

Something else I found interesting...I was asked the country of origin of my Mother (Ireland) and the country of origin of my father (Italy).  Then I was asked, "So it is safe to say that they are not related?"  Hmmm, Brad and I looked at each other on that one.

Dr. Tinkle said it does make sense that my POTS is worse when my neck instability is worse but at this point they are not sure the relationship between the neck and the autonomic nervous system.

Dr. Tinkle made the comment that I will hopefully grow out of the POTS by my forties.

So I think that pretty much covers it.  I am so glad I went and I came away with so much information.  But like I said, there was quite a bit of information I did not want to hear, which was really overwhelming as I left the office.  In the elevator, on the way out, I couldn't help the tears as I felt so overwhelmed about the many lifestyle changes and realities that are ahead of me. 

And then we reached the ground floor of Cincinnati Children's Hospital. As we left, I saw children in wheelchairs, with breathing devices, bald from chemo...and I saw their exhausted parents. 

And I gained the perspective I needed for that moment. 

It IS overwhelming and it DOES suck at times but it really is not THAT bad, and is not something I can't handle. 

Roses and Thorns

Thanks to all who have been inquiring about Cincinnati, my appointment with Dr. Tinkle, and when I'll update my blog about it.  I am realizing that I have more readers than I thought :) 

I am working on the appointment post but it is a lengthy one and I want to make sure I have everything accurate before I publish it.  Tomorrow I am going to listen to the audio tape of the appointment before I post it since Dr. Tinkle was kind enough to let me audio tape what he had to say (which was a lot).   

So instead, today I will take Allie's advice and post my roses (highs) and thorns (lows) of my day. 

Rose:  Theresa came over and she taught me how to make buckeyes.  We cranked out 120 of them in an hour and a half.

Thorn:  They are sitting in my house waiting to be eaten.  I need to hand them out ASAP.

Rose: I did a leaning (standing) tilt against the wall for 11 minutes without my heart rate going through the roof.

Rose: My neck muscles were not hard as rocks today, so that meant no horrible headache. 

Thorn:  My knees were popping like crazy and my back was pretty unstable.

Rose:  I made an appointment with a new PCP.

Thorn: It is not until the end of January.

Rose: My compression stockings are getting much easier to put on.

Thorn:  They keep falling down to my knees after I put them on and I can't figure out why.

Rose: We had stuffed peppers for dinner. Yum.

Rose: One of my students sent me a giant hand-made heart card that is beautiful.  I miss my kids.

Rose: I found a website that has Ugg boots for 70% off.

Thorn: Hopefully it is legit.

Rose: My brother said he'll take me to Angola, IN to see the spine doctor on Friday.

Rose:  I was on my feet more today than usual without feeling like I was going to pass out.

Rose: My return to physical therapy is scheduled for December 21st. And this time we know what is wrong.

Rose: Biggest Loser Finale.

It's always a good day when your roses outweigh your thorns.

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.