Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

The \”Speeches\”

Written by Katie. Posted in About Me, Ehlers-Danlos Awareness, Favorites, Fundraisers, POTS Awareness

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For documentation sake, here are Allie and my speeches from “An Evening with Chris Trapper to Benefit Invisible Illnesses,” which was held on April 14th at Lou and Harry’s Sports Bar and Grill.

Katie’s Speech:

“Starting to feel better, so bring on the weather I feel I’ve prepared for anything…

We are the ones who are never afraid, We need no rehearsal to dance. We’re well aware this may be our last chance,

So bring on the avalanche.”

 That was an excerpt from one of Chris’s songs, “Avalanche.”  For the last two years I have been learning how to face my Avalanche.  And you know what? The fact that I am able to stand on my two feet in front of you tonight instead of in my wheelchair, is one of the reasons for me to continue to fight to face my Avalanche.

The idea for tonight started as a dream.  I saw Chris in concert last April in Ann Arbor, after my Aunt Madalena introduced me to his music, when I was honestly at my sickest, lowest point.  Out of his extensive catalog of beautifully crafted songs, it was “Avalanche” that quickly became my “you will get through this” anthem.  I replayed the song over and over… and over during the long, period of time I was sick, scared, in pain, and undiagnosed.  I played this song as I took off on my doctor tour, seeing over 20 doctors, hoping and praying that just one of them would be able to put the puzzle pieces together.  I played this song over and over after I was finally diagnosed with the two chronic diseases: a genetic disease called Ehlers-Danlos Syndrome, and an Autonomic Nervous System Disease called Dysautonomia, or more specifically, Postural Orthostatic Tachycardia Syndrome.  I played this song over and over as I rehabbed at MSU and at home, as I received hundreds of injections every month, as I cried, as I laughed, as I pulled on my ugly, horribly uncomfortable compression stockings.  I played this song as I fought to return to teaching my 4 and 5-year-old students.  I still play this song, when I need the reminder that the fact that I am alive, and am able to face my avalanche everyday means that I am so blessed.

When Allie became sick in 2008, and we almost lost her, I vowed to myself that I would do a fundraiser one day for her and for the disease that she lives with called Vasculitis.  Little did I know that two years later, I, too, would become suddenly sick with two mysterious illnesses.  After I was diagnosed, Allie and I then talked and talked about how we could do a fundraiser for all three diseases but everything we came up with just did not seem right.

It was then a few months after seeing Chris Trapper in concert that my Aunt Laurie threw out the idea about asking Chris to come and play for a fundraiser.  I scoffed at that idea, thinking there’s just no way.  But as I thought more and more about it, I just kept thinking, the worst he could say was no.  So one day I pulled on my big girl pants and I asked.  And a few days later he answered.  I was quickly put in touch with Chris’s fabulous manager.  After we received the confirmed green light, the Dama women sprang into action and began planning, and planning, and planning.  And well, the rest is history, and here we sit tonight.

I want to first take a minute to talk a little bit about EDS and POTS, since most people usually look at me funny and think I am referring to either Erectile Dysfunction or marijuana.  Ehlers-Danlos Syndrome, or EDS is a connective tissue disease caused by faulty collagen.  Collagen is the glue that holds the body together.  So when the collagen does not do what it is supposed to, it can cause so many different complications like joint hypermobility, dislocations and subluxations, joint pain, tissue fragility, premature rupture of membranes during pregnancy, vision problems, gastrointestinal problems, and Dysautonomia just to name a few.

Then there is Dysautonomia, or POTS, which literally means that the autonomic nervous system is out of whack. The normal, automatic things our bodies do that we usually take for granted like control our heart rate, blood pressure, circulation, and digestion become abnormal in a person with Dysautonomia, or in my case, POTS.  Therefore POTS can cause tons of different complications as well including dizziness, brain fog and memory problems, anxiety, a low or high blood pressure, overwhelming fatigue, tachycardia, pooling blood in the stomach and lower limbs, gastrointestinal problems, visual disturbances, insomnia, and the inability for the body to regulate its temperature to name a few.

Ehlers-Danlos, Dysautonomia, and Vasculitis are known as three of many, hidden or invisible illnesses.  I don’t like to usually focus on my diseases, but it is important to me to get the word out about the need for sensitivity on the issue of invisible illnesses.  I urge everyone, including myself, to think twice the next time we are quick to judge someone.  Take it from Allie and me, you cannot tell what a person is going through or dealing with just by looking at them.  I cannot tell you the amount of confused, surprised, or even angry looks that I have received on the days when I have been forced to use my handicap sticker or wheelchair. I realize that I cannot expect people to just know, if I don’t try to explain myself, and what I go through.  This is where the awareness comes into play.

I am a pre-kindergarten and kindergarten teacher.  I returned this year teaching half-time after having to take all of last year off.  I shower every morning before I go to school.  I then have to sit or lie down to allow the blood that has pooled in my legs and stomach to return to my brain, so that I do not become sick, and I can go to work.  I go to school and it is there that I have mastered the art of alternating sitting and standing so I do not pass out. I eat a lot of salt to keep my blood pressure up and I drink three liters of water everyday to keep my blood volume up.  I rehab three-four times a week with my wonderful physical therapist, Katie, to keep my muscles strong so my body does not come unglued because of my defective collagen.  I take medications everyday in order to slow my heart rate down and to raise my blood pressure.  I sleep two hours every afternoon so I can function the rest of the day.  I receive close to 100 shots every month in order to better stabilize my joints.  I maintain my health with many doctors including Dr. Grubb in Toledo, Dr. Lavallee and Dr. Cantieri in Indiana, and Dr. Larry Nassar who is not only the captain of my medical team, but who is one of the biggest heroes in my book.

Despite all of this, I remind myself that I was blessed with these two diseases for a reason.  I have become a better person because of them.  I have learned more about empathy, myself, my priorities in life, and the person I want to be because of POTS and EDS.  I have an amazing support system of family and friends. I have a Mom and a husband who will push me in my wheelchair, and when I cry because I am mad that I have to ride in it, they remind me that I am lucky to have it because it gives me the freedom to do the things that I need to do.  I have all of you.   I have music.  And inspirational examples all around me.  I have my faith. I have a voice and I have learned how to use it in order to advocate for myself.   I have found my coraggio.  I have realized that I am a fighter and a survivor.

I still have my good health.  In fact, I still have my great health.  My organs work.  My brain is sharp.  I can see and hear.  I am alive and well and breathing.

I truly believe that I was blessed with these diseases to help others try and see things just a little bit  differently. To become a reminder that you never know what someone is going through just by looking at them. To raise awareness and funds for these often overlooked diseases that have no cure.  To help others know that it is important to advocate and fight for your health because if you don’t do it, no one will.

Because of all of these blessings, I have started to feel better.  I do feel that I don’t need rehearsal to dance.

And to me, all of these things have become enough as I continue to face my Avalanche.

Allie’s Speech:

As was mentioned at the beginning of the evening, I have a condition called PAN. Polyarteritis Nodosa Vasculitis, to be exact. It might sound corny, but this condition has been both the worst thing, and the best thing, that has happened to me in my 24 years.

It all began in the summer of 2008, when I woke up one morning with astonishing pain throughout my body. Everything ached from head to toe. At first I just figured that I was sore from my workout the day before. You see, I had been a gymnast for 17 years, and a little pain was nothing new to me. But then I quickly realized that this was a very different sort of pain.

This pain continued for several days, then several weeks. As a University of Maryland athlete, I started out by visiting with the team physician. After some uninspiring bloodwork, I was told that I probably had a virus and it would go away on its own. No problem, right? Well, the waiting continued and weeks turned into months. Along the way I had been put in touch with several more doctors, who asked the usual questions and examined my symptoms, but had no answers to offer.

By this time we were heading into the holidays. Preseason training was well underway, as were my new symptoms of daily fevers and frequent vomiting. I was exhausted, hurting, and obviously ill, as well as emotionally drained by the shoulder shrugs and looks of bewilderment from doctors.

It was only after one especially bad week that my athletic trainer picked me up from my apartment in the middle of the night and drove me to the hospital. I am thankful that she did this, because shortly after my arrival, my condition rapidly deteriorated.

I will skip the play-by-play and go right into the main details.

After all was said and done, I spent 48 days in the University of Maryland Medical Center. I lost count of the number of doctors and specialists I had seen. On Christmas Day my blood pressure spiked so high that I suffered two serious seizures, which nearly ended my life or left me with permanent brain damage. I had ultrasounds, x-rays, CT scans, MRIs, EKGs, endoscopies, colonoscopies, a PICC line, a spinal tap, a bone marrow biopsy, a failed attempt at a feeding tube, and finally, a kidney biopsy. It was that final test, the kidney biopsy, which finally helped diagnose me with Polyarteritis Nodosa Vasculitis and ultimately saved my life. The fact that the medical team even conducted this uncommon procedure can be accredited to one very persistent, dedicated, and compassionate doctor who refused to give up on me. I will be forever grateful to him.

Right now I am going to take a bit of a tangent and talk about this rare condition known as Vasculitis. Vasculitis is a family of diseases that is best explained as the inflammation of blood vessels. It is an autoimmune condition, meaning that the immune system goes into overdrive and begins attacking healthy cells and tissues. In my case, my immune system began attacking my small and medium-sized blood vessels, damaging the walls, interrupting blood flow, and interfering with vital organ function. Vasculitis can manifest and present differently in people, but the most common symptoms include joint and muscle pain, fatigue, abdominal pain, fever, and weakness. There is no known cause or cure. When left untreated, Vasculitis can lead to permanent disability or death.

Luckily for me, immediately after my diagnosis I began treatment with a top rheumatologist and was started on intensive medication. After being released from the hospital, I came home to Michigan to continue recovering and rebuilding my strength. Between the steroids and weekly infusions of chemotherapy, my Vasculitis symptoms improved, though the side effects of these medications were an entirely new battle to fight. Though still on tons of medication, I was eventually feeling well enough to return to Maryland and resume my education. Sadly, I was never able to physically return to the sport I love, but my second family of teammates and coaches welcomed me back to the team with open arms.

I am proud to say that this past February, after 4 long and hard years, I was finally taken off of the chemotherapy drugs and told that my Vasculitis is in remission. I will always be at risk for a flare-up or for an aneurism due to my damaged blood vessels, but I am so happy to say that at this very moment, I am very much alive and feeling great.

So I know that up until this point, the story of my life with Vasculitis sounds pretty terrible. Most would agree that I have been through an awful lot, and probably much more than any 24-year-old should. But rather than dwell on the hardships and the difficulties that I have faced over the past few years, I think it is much more important to share the lessons learned and the positive things that I have gained from my experiences.

I have learned that life is a blessing, which should never be taken for granted. I have seen firsthand that things can change at any moment of any day.

I have learned that my health is not something to take lightly. I have learned to listen to my body, to treat it kindly, and to give it the respect that it deserves.

I have learned to advocate for myself. I know myself better than anyone else, so who can communicate my needs better than me? This medical condition forced me to learn how to speak up for myself and to take charge of my life. I now understand that asking for help is not a sign of weakness, but actually a component of maturity and strength.

I have learned a greater respect for myself. I understand that I have been through a lot and that learning to cope with this chronic condition will be a continuous, lifelong process.

I have learned about friendships, as my own were put to the test during this ordeal. I have learned that support, compassion, attention, and humor are the qualities that it takes to build and maintain lifelong relationships. I have learned that you never know what a person is dealing with, so it is important to always treat them with respect and care. I have learned to choose who I surround myself wisely, because there are people who will bring you down, and people who will raise you up.

I have learned the true meaning of family and I now understand the bond of love and devotion that can get a person through their darkest of days.

I have learned that Vasculitis does not define me, but is simply one layer of my being. I have learned that I am stronger than I ever imagined, and that when faced with adversity, it is best to challenge it head-on.

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