Monday, August 26, 2019

Tuesday, August 20, 2019

Gastroparesis Awareness Month: Smash GP

August is Gastroparesis Awareness Month.

To understand gastroparesis, you need to have a general understanding of how the digestive system works...

The digestive tract is like a plumbing system. Each part of the digestive tract has its own specific function in digestion. When everything works properly, food travels down the esophagus and into the stomach where it is broken down into small food particles suitable for the small intestine. Once in the small intestine, the muscles work to push the food through all 22 feet and into the large intestine (colon). The process continues until the nutrients have been absorbed and waste has been expelled from the body.

Gastroparesis (GP)- delayed stomach emptying
Literally translated, gastroparesis means "stomach paralysis"

Relating this to a plumbing system...if there is a blockage somewhere in the system and waste is not moving out fast enough, there will undeniably be a backup of waste material. Because it has to go somewhere, it generally comes back up the way it came.

The same concept applies to gastroparesis. If the stomach doesn't empty food in a timely manner (delayed stomach emptying), stomach contents will backup in the digestive tract leading to nausea, vomiting, bloating, feeling of fullness after just a few bites, abdominal pain, belching, lack of appetite, weight loss and malnutrition.

I was diagnosed with GP in 2018 after years of struggling to tolerate food. [To read more about my journey to a diagnosis-- click here]. It is not clear what leads to gastroparesis, though a lot of patients with EDS and/or POTS have delayed motility. I tried diet changes, lifestyle modifications, and every available medication with no success.

Ultimately, due to significant weight loss and malnutrition, it was determined that I needed a feeding tube. Though I was not happy with the decision, it was necessary, and ultimately has given me a piece of my life back. It provided steady nutrition, something my body was missing for 2 years, and has actually allowed me to tolerate more food orally.
Black and Gold is a way of life...

[If you want to learn more about feeding tubes, I wrote about them here.]

As part of Gastroparesis Awareness Month, I took part in the Gastroparesis Pie Face Challenge
[Twitter and Instagram: @gppieface]

Help us raise awareness for gastroparesis by taking part in the GP Pie Face Challenge and upload your video to social media (tagging the accounts above and using #SmashGP)

I nominated three people to complete this challenge:
1. Brad Marchand of the Boston Bruins and my favorite hockey player...#TeamBrad
*As some of you may recall, I met Brad in the hospital in December 2018- to read that story -- click here
2. Dale Arnold, Host of Boston Bruins games on NESN - video of challenge
*Dale is also an author- If These Walls Could Talk: Boston Bruins, Stories from the Boston Bruins Ice, Locker Room, and Press Box
3. Todd Angilly, anthem singer for the Boston Bruins - video of challenge
*Best anthem singer in the NHL - learn more about Todd

Together we can Smash GP

Monday, July 22, 2019

But are we really fine?

"How are you doing/feeling?"

This is a pretty normal opening question to any conversation, right? For the most part, people respond with either "Good," "okay," "fine," "alright."

A pretty typical answer for me would be "I'm fine, you?" I am sure many people with chronic illness have a similar response.

But are we really fine?

The answer is probably not. For me, I rarely have a "good" day, despite how I may look (which is an entirely different topic that I previously addressed here). A "good" day is really just the best of the bad days. I live with constant pain (yes, every second of every day). I understand this can be difficult to comprehend as I don't typically show that I am in pain. I have become very good at hiding my discomfort and adapting to my baseline. I experience numerous joint dislocations, daily headaches, neurological symptoms, and debilitating fatigue. Some days I don't regulate my blood pressure and heart rate correctly and feel as though I am going to faint. I still struggle with nausea, vomiting, abdominal pain, and bloating with food and tube feeds. This is all part of my "normal." Everyday. For people living with chronic illness, perhaps we have convinced ourselves or accepted the fact that our "fine" is very different from a healthy person's definition of the word. But realistically, does all of that seem "fine?"

So why don't I just tell the truth about how I am doing? Sometimes I just don't want to talk about my health. I live with this reality everyday. I don't want/need to spend all of my energy talking about how I am feeling, especially given I have come to learn that most people really don't want to hear the truth. With or without chronic illness, it's used as a conversation starter and the expected response is "good," "fine," or "okay." Who wants to hear that someone is struggling or in pain?

And truthfully, people are so hung up on how a person "looks" that they have already made their own assumptions on how I am doing and usually ignore any attempts at explaining how I really feel. I cannot even begin to explain how many times I hear, "but you look so good," and when I try to explain that I don't feel as good as I look, I am met with either confusion or more comments about how I must be doing better because I look good. Just because someone doesn't look sick or disabled, doesn't mean that they aren't. Don't get me wrong...I want to look good. I just also want people to understand that the way I look doesn't necessarily correlate with how I actually feel. Yet the two seem to go hand in hand, and the concept of invisible illness seems impossible to understand for those who do not live with chronic health problems.

[Again, if you want to read more about invisible illness I wrote about that here].

Sure, there are those people (largely family and close friends) that genuinely want an update on how I am feeling; although, I am not always forthcoming with them either. Even family and friends don't really want to hear that you're not feeling well all the time...for a variety of reasons. For one, it's not a positive conversation and people tend to prefer when the mood is light. That's not to say that sharing my symptoms is being negative. It's not. Saying that I have a headache or pain is a fact. It's part of my reality. It's just not the positive and light discussion that most people are hoping for and often makes people sad/upset. It's also awkward and uncomfortable when someone is expecting you to answer with the normal, mainstream response of "good" and you hit them with your most recent symptoms or overwhelming list of daily struggles.

Because I do not like disappointing people or making people uncomfortable, I often just keep my answers short and sweet or throw in some sarcastic humor.

Well, I'm alive.

Hanging in there.

Same as always. 

I'm fine.

...but the reality is very different. 

Friday, July 12, 2019

Jillie Beanz Gifts

Jillie Beanz Gifts is back! I first opened my shop on Etsy in 2016 where I sold embroidered kitchen towels! Following some health challenges, I closed my shop indefinitely; however, I have decided to reopen on a new platform, Instagram (@jilliebeanzgifts). When I first created Jillie Beanz Gifts, I wanted there to be a connection to my dad, who passed away in early 2016. I chose Jillie Bean, as that is what my dad always called me. I will be working to post towel designs in the coming days and weeks. Most of my old designs are already posted. There are some new ones as well that are available or coming soon. I am also working on creating a FB page for those that don’t have Instagram. Feel free to send me a message on IG @jilliebeanzgifts or at if you have any question or want to place an order. My towels make great housewarming and holiday gifts! 

Thursday, June 13, 2019

Black and Gold, Always!

Its hard to describe the emotions of falling just short of the ultimate goal when you put so much of your heart and soul into it. The Bruins are my biggest passion. They are my lifeline. They keep me going in my darkest moments. While the season didn’t end the way we had hoped, it was truly special. I was reminded today of the friendships I have made this year and the experiences I was able to share with my favorite people. I have no doubt we will be back. And I will be waiting, albeit impatiently, for the puck to drop next season. Until then, I will continue to bleed black and gold. I will always love this team and the city of Boston. Thank you Brad, Katrina, and the Bruins organization for the most amazing season. We will bring the cup back to Boston. I know it. I love you all 💛🖤

Friday, May 10, 2019

EDS Awareness Month: Answering Your Questions! PART TWO

Because connective tissue can be found all throughout the body, there are a lot of secondary or associated conditions that are believed to be connected to EDS--Dysautonomia (POTS, orthostatic hypotension, neurocardiogenic syncope), Chiari Malformation, asthma, heart complications (Mitral Valve Prolapse), Mast Cell Activation Syndrome (MCAS), gastroparesis and other GI motility challenges---and the list continues.
What other conditions do you have?
In addition to EDS, I have Chiari Malformation, craniocervical instability, neurocardiogenic syncope and POTS, bilateral acetabular hip dysplasia (corrected in a procedure called Periacetabular Osteotomy--PAO), gastroparesis and delayed intestinal motility, Hashimoto's, Graves', autoimmune neutropenia, and complex regional pain syndrome (CRPS).
What is POTS? 
Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia (autonomic dysfunction) and a form of orthostatic intolerance. Dysautonomia (autonomic dysfunction) is a term used to describe any disorder/disease/malfunction of the autonomic nervous system. It is associated with Ehlers Danlos Syndrome.

The autonomic nervous system controls functions that we do not consciously think about--blood pressure, heart rate, respiration rate, digestion, etc.

POTS is characterized by an increase in heart rate (tachycardia) of at least 30bpm or more or >120bpm within the first 10 minutes of standing in the absence of orthostatic hypotension.

This is a fantastic video that explains POTS in a simplified way, as disorders of the autonomic nervous system are incredibly complex.

Can you explain what its like to live with POTS? How does it affect you?
POTS is exhausting and unpredictable. Living with POTS is like running a marathon that never ends. My body has to work 3x harder when I am upright as compared to a healthy individual. It leaves my body with very little reserve. It can feel like a never-ending flu. I feel dizzy, lightheaded, weak, shaky, nauseous, and painfully exhausted every single day. I have good days and bad days, but symptoms are always present and can hit at unexpected/unpredictable times.

What is the treatment for POTS? How do you treat your POTS?
POTS can be very difficult to treat/manage. There is no cure, so the goal is to alleviate/manage symptoms. Every patient is different. Treatments for POTS include increasing fluid intake, increasing salt consumption, wearing compression stockings, raising the head of the bed, and graduated exercise. If non-pharmacological methods are not enough, there are a number of different medications that people take to decrease heart rate and/or increase blood pressure. 

I went through the standard process of treatment. I started with all of the methods listed above; however, I reached a point where I struggled to get out of bed without fainting and medications were not effective enough. Due to low blood volume, I receive IV fluid 3x/week through a port-a-cath (central line). Though it is not a cure and I still experience symptoms, IV fluid has been the single most effective treatment for me. The use of a central line and IV hydration should be the LAST RESORT as there are risks involved.

What is gastroparesis?
Gastroparesis (GP) = delayed stomach emptying. Delayed stomach emptying leads to a backup in the digestive tract and symptoms of nausea, vomiting, bloating, feeling of fullness after just a few bites, abdominal pain, belching, lack of appetite, weight loss and malnutrition.

Literally translated, gastroparesis means "stomach paralysis."
Can you eat?
Yes, I can eat. However, I do not tolerate enough food orally to sustain myself from a nutritional and caloric standpoint. As a result, I have a feeding tube. To learn more about feeding tubes click here

How is it treated?
Everyone is different. Treatment varies from diet changes to medications to feeding tubes to surgical intervention and gastric pacing. 

Chiari and CCI
What is Chiari Malformation? 
Chiari Malformation is a neurological disorder where part of the brain (the cerebellar tonsils) herniates or descends out of the skull into the spinal canal. This results in compression of the spinal cord and brain stem. As a result, this compression disrupts the normal flow of cerebrospinal fluid (CSF) leading to disabling neurological symptoms (headaches, occipital neuralgia, numbness and tingling in hands and feet, weakness, nausea/vomiting, dizziness, low blood pressure, and many more).

How were you diagnosed with Chiari?
In 2010, I experienced a CSF leak from an epidural I had placed for hip surgery. This resulted in the most debilitating post-dural puncture headaches. Despite returning to the operating room to have a blood patch to resolve the CSF leak, my headaches never went away. Eventually, a brain MRI confirmed an 8.5mm herniation. 

Symptoms of Chiari Malformation are much more than just headaches

Is there a treatment for Chiari Malformation? Is there a cure?
There is no cure. Treatment focuses on alleviating symptoms. This may include medication and/or surgery to relieve the compression on the brainstem and spinal cord. I underwent a brain surgery (posterior fossa decompression) in 2014. 

To learn more about my journey with Chiari Malformation you can watch my video:

What is CCI? 
CCI stands for craniocervical instability. It is a structural instability of the craniocervical junction, or where the skull and spine meet. This is often seen in conjunction with Chiari Malformation in patients with Ehlers-Danlos Syndrome. Treatment includes the use of a cervical collar, physical therapy (by an EDS knowledgable PT), or a craniocervical fusion. 

Concerns about family members
Diet tips for people with POTS?
With POTS it is often common and recommended to increase fluid and salt intake. This helps boost blood volume because where salt goes, water follows. As I am not a physician and cannot offer medical advice, any concerns about dietary changes or the use of multivitamins should be discussed with your doctor.

Thursday, May 2, 2019

EDS Awareness Month: Answering Your Questions! PART ONE

Last month I asked people to send me their questions about EDS and related asked some really great questions! 

Due to the number of questions and length of some answers, I have separated the questions into 2 posts. Below are the answers to part one!

General EDS Questions

What is EDS? 
The Ehlers-Danlos syndromes (EDS) are a group of genetic connective tissue disorders. Connective tissue is found in about 80% of the human body and is made up of proteins that support skin, bones, blood vessels, and other organs. EDS is characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. There are currently 13 subtypes. The specific gene mutations are known for all but one subtype- hypermobile EDS (hEDS). The genetic cause varies depending on the particular subtype, but EDS often involves a defect in the protein collagen. Collagen is the glue that holds the body together. 

People with EDS present with joint, skin, and systemic problems. The hypermobile joints are unstable and prone to frequent dislocations and subluxations (partial dislocations). This leads to widespread musculoskeletal pain and early onset of osteoarthritis. People with EDS often have very soft velvety-like skin that is hyperextensible and fragile. The skin may tear or bruise easily, resulting in severe scarring, and slow and poor wound healing. 

Depending on the subtype, people with EDS are also more prone to arterial, intestinal, and uterine fragility or rupture, scoliosis, poor muscle tone, and mitral valve prolapse. 

EDS is a spectrum disorder. The severity varies from person to person. Some are only mildly affected, while others are completely disabled.  No two people with EDS present in exactly the same way, making it incredibly difficult to diagnose and manage. For some, EDS is progressive, with symptoms worsening over time. 

What is the treatment for EDS? Is there a treatment? 
Treatment plans are individualized and focus on managing symptoms, which are widespread and varied. Treatment for EDS may consist of surgery, physical therapy, and bracing or splinting. Making treatment and management of EDS complicated are the comorbid conditions. I will cover questions related to the associated conditions in part two.

Surgery may involve a particular joint with the goal of stabilizing it as best as possible. This often requires creative thinking from the surgical team and the use of allografts (a tissue graft from a donor of the same species as the recipient but not genetically identical.) Joint fusions may be necessary as a last resort. There are a number of non-orthopedic surgeries that are sometimes required as well due to the comorbid/associated conditions (neurosurgery, cardiovascular surgery, GI surgery, etc.).

PT is incredibly important in EDS, but it is also crucial to find a physical therapist that understands EDS. Often times traditional exercises are not effective or safe. Many with EDS also have comorbid conditions that need to be considered as part of the PT treatment plan as well. The goal of PT is to increase muscle strength to better stabilize joints, address muscular imbalances, and improve proprioception.

Bracing and splinting provides additional support and stability to unstable joints. However, the downside to braces/splints is that it can also lead to muscle atrophy, which leads to more instability.

Is there a cure (or one currently being worked on)?
Unfortunately, to date, there is no cure for any of the 13 subtypes of EDS. One of the reasons I am so passionate about raising awareness and helping people better understand EDS and related conditions is awareness leads to more funding and research. Without research, there will be no cure.

What are the differences between the 13 subtypes?
Each subtype has its own set of clinical criteria; however, there are similarities between the different types. Similarities include joint, skin, and systemic manifestations consistent with connective tissue disorders. To learn more about the differences click here!

Is EDS painful?
Yes, for me it is! I deal with anywhere from 1 to 20+ joint dislocations/subluxations every day. Dislocations and subluxations lead to significant joint pain as a result of micro and macro trauma to the surrounding nerves, soft tissue, and bone structures. I experience pain every minute of every day.

What is the difference between dislocations and subluxations?
A dislocation is a "displacement of a bone from its natural position in the joint." This occurs when the two bones that form a joint fully separate from each other. It requires reduction, or manipulation to relocate the bones back to their proper position.

Anterior shoulder dislocation

A subluxation is a partial dislocation in which the bones begin to separate, though not completely. A subluxation can be just as painful as a dislocation and can even be more difficult to address due to widespread muscular imbalances as the body tries to compensate.

Medial kneecap subluxation

I know someone who is "double jointed." Is that the same thing as EDS?
First, there is no such thing as being "double jointed." The proper term is joint hypermobility (joints that move beyond normal/expected range). Joint hypermobility is a characteristic of EDS; however, just because someone is hypermobile, does not mean that they have EDS. Additional clinical criteria must be met before a diagnosis of EDS can be made. EDS is much more than just hypermobile joints. Many people with EDS live with a number of different chronic illnesses that affect multiple systems (all due to faulty connective tissue).

EDS Research and Awareness

How has the general awareness of EDS changed since you were first diagnosed? Has it gotten better or worse?
Great question! Awareness of EDS has certainly improved since my initial diagnosis in 2010. When I was diagnosed at 19 years old, hardly anyone knew what EDS was (including healthcare providers).  I often had to spell it out for my doctors just so that they could "Google it." This made it even more difficult to be accurately diagnosed, much less to find a team that understood how best to manage the many manifestations and widespread systemic problems. While it is still not widely known or understood, it is slightly more recognizable in healthcare; that is my experience at least. However, we are nowhere near where we need to be in regards to awareness. There is not enough research. There is not enough expertise. This needs to change.

In 2017, the clinical criteria were updated and new research/literature was released. This also led to new educational resources for healthcare providers and the general public. My hope is that awareness of EDS continues to improve. Increased awareness leads to more research. Without research, we have no hope for a cure.

Life with EDS

When and how were you diagnosed?
I was diagnosed in 2010 at 19 years old (just before turning 20). I was recovering from major reconstructive hip surgery (as a result of hip dysplasia) and due to immobility from the surgery (being unable to weight bear through my leg), my quad muscles atrophied. This led to spontaneous kneecap dislocations every day. I also struggled with near fainting episodes during that time frame as well. Ultimately, my surgeons referred me to genetics due to the spontaneous kneecap dislocations as well as my past history of gymnastics injuries. I was diagnosed based on clinical examination with hypermobile EDS; however, it is now suspected that I have classical EDS (cEDS). 

How do you manage dislocations and EDS?
EDS: First and foremost, physical therapy. I have been in physical therapy for the last 10+ years. The treatment plan and techniques used depend on the particular area we are working on. The goals, as stated above, are to increase strength and stability, improve proprioception, and manage muscular imbalances and dislocations/subluxations. I also utilize braces/splints to provide additional support, and use mobility aids regularly (wheelchair and/or crutches). Though there is no perfect solution and surgery is not a cure, sometimes we reach a point where my quality of life and function with a particular joint is severely impacted and surgery is the best option.
Dislocations: For me, the first step in managing a dislocation is to reduce it (or relocate the joint back to its "normal" position). Sometimes this is easy, and other times it just does not seem to go back in correctly. Depending on the severity of the joint dislocation, I either do nothing (after it is relocated), or I brace/splint/immobilize the joint until the surrounding soft tissue has a chance to settle down. Occasionally I require assistance from my PT to address muscular imbalances that occur as a result of a dislocation/subluxation.

How will EDS affect you in the future?
It is difficult to predict how EDS will affect my future as both EDS and chronic illness are truly unpredictable. I can't predict what my body is going to do 10 minutes from now, so how can I predict my future? With that said, EDS can be progressive. It has been for me. I have watched my health decline over the last 4-5 years and I have not been able to regain any sense of stability. So while I would welcome any improvement, realistically, with a chronic and progressive disorder, it is unlikely that my health improves significantly. This reality is stressful and overwhelming at times because it makes planning my future even more challenging. I want to be able to support myself and be independent. I want to be able to contribute to society in a meaningful way. Unfortunately, with no ability to plan, I do not know what my future will hold.

What is one thing you want someone without EDS to know about EDS or how it impacts your life?
In a perfect world, friends and family (and the general public) would understand everything. But that’s unrealistic. I think the ONE thing I want someone without EDS to know about EDS/how it impacts my life is that it's lifelong. EDS is a genetic condition. I was born with it. It is chronic and progressive. It is not going away. I won’t wake up tomorrow and be better. Surgery isn’t a cure. Physical therapy isn’t a cure. Bracing and splinting is really just a band-aid. There is no medication that will fix this. There is NO cure. The concept of chronic and progressive illnesses seems to baffle people. They really struggle with the idea that there are health conditions that exist without a starting point and an end.

There are so many things I wish people understood. It is not possible to cover them all. It is also not realistic for me to expect people to understand what it is like to live with chronic, unpredictable, progressive illnesses. That is something that you only truly understand when you are living it. I am blessed with family and friends who want to understand and for that, I am forever grateful. Not everyone is as lucky to be surrounded by a wonderful support system. 

What is the hardest/worst part about having EDS?
I think the unpredictability of EDS and chronic illness is the hardest part. Every day is different. I have very little control over what my body does on any given day and that makes it very difficult to plan too far in advance. I often feel guilty canceling plans last minute, and sometimes push myself more than I should because of this guilt. For someone who likes to be in control of situations, I have very little control.

What is the biggest lesson you have learned from EDS?
EDS has taught me so much. It has taught me how to adapt and how to live despite my illness and altered reality. It has taught me to persevere and to trust my instincts and fight for what I believe in. Everyday with EDS I learn. I learn more about myself, my abilities, and my strengths.

My life with EDS and chronic illness is not the one I had envisioned for myself. I had envisioned a life in Boston, working as a nurse at my favorite hospital (the hospital that has done so much for me). I envisioned pursuing a Master's in Case Management and/or Genetics to help others like myself navigate a complicated system. I had hoped to make a positive difference in people's lives. That is not my reality though. So the biggest lesson I have learned is how to adapt to life's circumstances to redefine myself, my goals, and my dreams.

How does EDS effect people with respect to their work life? Are people with EDS able to manage to have jobs/careers?
EDS is a spectrum disorder. Some are only mildly affected, while others are completely disabled. Some are able to work full-time with very little difficulty. Others are able to work part-time. Yet,  some may not be able to work at all. 

I am a Registered Nurse. I worked incredibly hard for my license; however, unfortunately, I am unable to work at this time. I do volunteer as a nurse at a barn that provides programs for special needs children. This allows me to feel purposeful.

My health changes constantly. I live with unrelenting pain and fatigue. In addition to EDS, I also have Chiari Malformation, craniocervical instability, neurocardiogenic syncope and POTS (autonomic dysfunction), gastroparesis and delayed intestinal motility, Hashimoto's, Graves', autoimmune neutropenia, and complex regional pain syndrome (CRPS). With the unpredictability of having so many chronic illnesses, I never know how I am going to feel on a given day or week. It is a frustrating reality, as I want nothing more than to be able to support myself and contribute to society.

What aids do you use regularly? Do you need to use mobility aids and braces consistently?
Due to joint dislocations, joint pain, fatigue, and autonomic dysfunction (POTS) I use a variety of different mobility aids depending on my situation. Sometimes I require a wheelchair for longer outings or circumstances that would require me being on my feet for too long. Due to POTS, I cannot stand for extended periods of time without pre-syncopal/syncopal (fainting) episodes. I am also struggling with right hip dislocations/instability that make weight bearing through my leg very difficult. I am a high fall risk as a result, and a fall leads to other dislocations and injuries. 

For shorter outings, I use forearm crutches. The challenge with crutches, however, is that my right shoulder is incredibly unstable and often dislocates when I apply too much weight through my arm. This can also lead to falls, and with joints that don't stay in place, falls are less than ideal.  

My wheelchair allows me to do fun things with family and friends!

Wednesday, May 1, 2019

Friday, April 12, 2019

The Reality of Chronic Illness

Last night I spent my birthday at the Bruins game with my brother. Anyone that knows me knows that there is quite literally no place I would rather be than at the Garden watching my favorite team play. To be able to do so on my birthday was even more special (even though they didn't play well and lost).

However, the game last night was just another reminder that I pay for almost everything I do. For me that involves increased pain and debilitating fatigue. Sometimes it means a setback in other aspects of my health as well (which may present several days later). It's just the reality of chronic illness.

So why do I still do it? Because it beats the hell out of spending everyday doing nothing (out of fear of a setback or an increase in symptoms) and wasting my life away. Life is happening right now, and there are no guarantees. With a progressive disorder, I can't simply wait for my health to improve before I live my life. In reality, my health likely will never improve all that much. My baseline or "normal" changes regularly but generally trends in the wrong direction.

It can be difficult to find a balance of when to push yourself and when to take a step back and let yourself rest. Sometimes I do have to say "no" or cancel plans last minute. However, if you are passionate about something and realize that there will be consequences later, you find a way to make it work. Sometimes that means utilizing resources that will make it a little bit easier. For me that means using my wheelchair, parking as close as possible (handicapped parking), and asking for help when necessary (which I must admit I am terrible at doing). It's part of accepting life with chronic illness. But at the end of the day, we are only given one life. It's now or never.

Win or Lose...I love my Bruins!
Today I spent the day resting so that I can get back out there on Saturday to cheer on my favorite team. Time to even up the series! Let's go Bruins!

Sunday, March 31, 2019

What does Awareness mean to me?

MAY is EDS Awareness Month...I realize that is a month away.

I am working on some awareness "projects" that I will share on my blog, Twitter, and Instagram. One project is a video of my journey with EDS.

Last year I took part in the EDS Awareness Challenge. I answered questions each day about living with EDS. This year I am opening it up to questions from you.

What do you want to know about EDS and related disorders? The questions can be simple or more complex. They can be related to EDS in general, or my life with EDS and how it impacts me.

You can use the email button to send me an email with questions or awareness suggestions. You can also send me a direct message on Instagram (medicalunicornmurph) and I will address all questions in May.

Friday, March 22, 2019

Invisible Illness

I had no intention of writing this post, but following a comment made last night I felt the need to make this clear.


So what prompted this?

I parked in a handicap spot at the Bruins/Devils game at the Prudential Center in Newark, NJ last night (3/21/19). My handicap placard was visible, and as a result I was instructed to pull into a separate handicap parking section. It was conveniently located on the same level as the bridge that takes you into the Prudential Center from the attached parking garage.

I arrived early, as I always do, so there were only a few other cars in this particular section (no more than 4). As I was sitting in my car, making sure that I had everything I needed for the game -- phone with mobile ticket, wallet, emergency medications, etc. (I will probably write a post later about planning for an event because it's not as easy as just going to the takes preparation when you are disabled), a garage security guard approached my car (the same one that instructed me to pull into the lot in the first place). I opened my door to make sure that everything was okay and to ensure that I was, in fact, in the correct location. I pointed again to my handicap placard and stated that I would be using a wheelchair for game. He looked down at my knee brace (it extends from my thigh down to my ankle so it is hard to miss) and said, "you have a bad leg, okay, you are in the right spot."

He then explained that his manager had told him to make sure that people actually needed handicap parking before allowing them to park there because recently people were utilizing handicap parking but were able to walk.

So, that's not how this works...

First, since when do parking garage attendants get to decide when an individual can utilize their handicap placard? If someone has a handicap placard, they can use it whenever they feel it is necessary. Sometimes that means only on "bad" days, and other times people use them everyday. That is for the individual to decide, but they should not need to justify using one to anyone.

Also, able-bodied individuals do not get to decide who is and isn't disabled just by looking at them. Many disabilities/illnesses are completely invisible; meaning a person may look perfectly healthy, but internally are anything but.

I have more than 8 chronic illnesses. Some of them are visible and some are not. With EDS, for example, I wear braces to stabilize my joints everyday, and I often use a wheelchair or crutches for mobility. Most of the time my braces are visible (though I do conceal them when possible) and, of course, my wheelchair/crutches are as well. However, if you took those mobility devices and braces away, EDS is actually largely invisible. That doesn't make it any less disabling. I still dislocate my joints constantly, live with significant pain, and struggle with countless other symptoms.

I also have a form of Dysautonomia (autonomic dysfunction) called Postural Orthostatic Tachycardia Syndrome (POTS). [If you want to learn more about POTS click here] As a result, my body does not tolerate being upright for very long. Simply standing up is like running a marathon for my body. When I stand up, my heart rate increases rapidly (tachycardia), and I often feel lightheaded, dizzy, and nauseous. This can lead to fainting if I am unable to adjust in time. But if I don't faint...POTS is  invisible. It is also just as disabling as my joint dislocations and chronic pain, and incredibly exhausting when your body is constantly trying to stabilize your blood pressure and heart rate.

There is no specific way a disabled person should "look." We come in all shapes and sizes, with visible and invisible illnesses. Also, just because someone CAN walk does not mean that they are not disabled in other ways (ie. autonomic dysfunction/POTS).


Still disabled...

I know it can be difficult, but please....don't be so quick to make assumptions or judgments about a person. Just because they look healthy, does not mean that they are. And they do not need to justify it to you...

Saturday, March 9, 2019

An Unforgettable Experience

I’m not even sure where to begin...

Anyone that knows me knows that the Boston Bruins are my #1 passion. They are my biggest distraction from pain and quite literally keep me going. There is hardly a day that goes by that I am not covered head to toe in black and gold, and I would not have it any other way.

It has somehow worked out that every December since 2010 I have had surgery at Boston Children's Hospital, and every year I have missed the Bruins visit by 2-3 days. However, this past December, while inpatient following surgery, I had the pleasure of meeting 4 players (Brad Marchand, Zdeno Chara, David Krejci, and Steven Kampfer). It was such an incredible experience to be able to meet them, and certainly put a smile on my face for the rest of the week while I recovered. We talked about the game the night before against Arizona, and when Chara asked me what I thought I told them I wasn't pleased with the team turnovers, despite the 4-3 win. On the way out, Marchand said: “I’ll think of you yelling at me on TV every time I turn the puck over.”

For Christmas, Shane bought me tickets to the Bruins/Hurricanes on March 5th. As a joke, I sent a tweet to Brad Marchand asking him to limit the turnovers while I’m at the game with a picture from the hospital visit. I didn’t expect him to see my tweet nor did I expect a response. I also didn't think he would remember me. But he did respond and offered me passes to say hi after the game.

The tweet that started it all....
As if that weren't generous enough, he also invited me to the games on Thursday and Saturday as well (I went 3/3). He provided each of us with a signed Winter Classic jersey and took us on a tour of the locker room. He hooked me up with Winter Classic gear and stopped every single Bruins player that walked by so that he could introduce them to us. He even made sure that I got a picture with Patrice Bergeron (and then chirped me for not being able to find words...I got better as the week went on though). His wife Katrina was incredible as well. She even visited us during intermission of Thursday’s game against the Panthers and it has been such a privilege getting to know her during this experience.

I really do not have words to describe the level of appreciation I have for Brad and Katrina. They went above and beyond anything I could have ever imagined. To be able to share this experience with my brother, cousin, and best friend was also special. I only wish that my dad could have been there with me as well. It’s been a rough year, but this was without question the best experience of my life. It was truly unforgettable.

To Brad and Katrina,

From the bottom of my heart, thank you for everything. I will cherish this week for the rest of my life. You are both amazing.

Keep it rolling! Go Bruins!

With the greatest appreciation and gratitude,

Bruins/Hurricanes with my brother and cousin
Brad Marchand #63
Patrice Bergeron #37

Marchand, Bergeron, Chara...what a crew!
Shane and I with Marchy!

Marchand #63 and McAvoy #73

He's the best!

Bruins/Panthers with my brother and Steve

Pastrnak, Kampfer (I met him in the hospital), DeBrusk

37 + 63 = 100!

Shawn Thornton

Group shot!

Bruins/Senators with my brother and best friend!

[For those interested, I wrote an article in 2014 about what hockey means to me from a health perspective- Hockey is the Best Medicine].

Eric Russo from the Boston Bruins wrote this article about the experience: Marchand Makes A Dream Come True


I was born in Connecticut, though my dad was born in Massachusetts; therefore, you could say that I was born into a Boston sports family. My dad taught me all about the Bruins. Not only did he teach me the game and share with me his favorite Bruins memories dating back to the days of Bobby Orr, but because of the Bruins I shared an incredible bond with my dad. Our collective passion for Boston sports, and specifically the Bruins, is something I will cherish for the rest of my life. I lost my dad to cancer in 2016. Now when I watch the Bruins, I know he is with me, just in a different way. I still feel a connection to my dad when I watch every game.