As the world resolves to weather the COVID-19 storm, the primary question amongst those with Ehlers-Danlos Syndrome, Chiari and Comorbids has become, “Do my conditions make me immunocompromised?”

While not all risks are equal amongst us, we do live with several factors originating from our condition(s), that can put us in the high-risk category. Doctors like to downplay our conditions, but the truth is that most doctors have no clue about what we REALLY deal with, and the ones that do admit that there’s still so much that the experts don’t understand. And so it is with COVID-19!

In Appendix A of a recent PDF entitled “Implementation of Mitigation Strategies for Communities with Local COVID-19 Transmission”, the Centers for Disease Control (CDC) included: “Neurological and neurologic and neurodevelopment conditions [including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability, moderate to severe developmental delay, muscular dystrophy, or spinal cord injury].” [1] This encompasses the many EDS related brain and spinal comorbidities (Chiari, Craniocervical Instability, Atlantoaxial Instability, Subaxial Instability, Tethered Cord Syndrome, Syringobulbia, Syringomyelia, or even an intravertebral disc compressing the spinal cord, etc.).

Ehlers-Danlos Syndrome is grossly underdiagnosed, so there are thousands upon thousands of sufferers begging for help who aren’t getting the testing and help with the symptoms that they need from their medical professionals. Even once diagnosed, that’s all that most diagnosed patients get. No further workups or limited workups are done and comorbids (even life-threatening comorbids that would make them immunocompromised) are unidentified and left untreated.

 

SOME OF THE CONCERNS WORTH MENTIONING ARE:

 

1. EDS patients are more likely to suffer from rheumatological conditions than the general population, both autoimmune/inflammatory diseases (psoriasis, PsA, AS, RA, inflammatory eye disease, autoimmune thyroiditis, SLE, Crohn’s disease, pernicious anemia, and TRAPS) and non-autoimmune (fibromyalgia), but diagnosing these conditions require a workup. According to a 2017 study published in Scientific Reports, “The percentage of patients with at least one rheumatological condition was significantly correlated with the level of workup. No workup (physical exam only) = 9.2%; Limited work up = 33.3%, Comprehensive work up = 67.1%.” [2]

2. Many of us suffer from medullary and vagus nerve issues that can labor our breathing and compromise our ability to swallow correctly, which in turn makes us more susceptible to respiratory problems and complicating recoveries when sick. [3]

3. Many of us live with Mast Cell Activation Syndrome (whether we’re diagnosed properly or not), which can increase respiratory issues and can further compromise our immune systems. [4]

4. EDS patients are far more likely to suffer from chronic inflammation (with and without elevated C-reactive Protein (CRP) and Erythrocyte Sedimentation Rate (ESR)); chronically swollen lymph nodes; and chronically elevated white blood cell counts, all pointing to our immune systems being under distress.

5. With our faulty connective tissues, our blood-brain barriers tend to be thin and permeable, thus allowing a virus or viral antibodies to cross over and damage our arachnoid villi. [5]

 

 

ABOUT CoViD-19 & SARS‐CoV‐2

Pandemics are not new to the world or to the United States. Originally deemed “The Wuhan Virus,” because of its location of Wuhan City, China, the virus hit beginning in December of 2019. It then quickly spread beyond the city’s borders. “Viruses are named based on their genetic structure to facilitate the development of diagnostic tests, vaccines, and medicines,” [6] by the International Committee on Taxonomy of Viruses (ICTV). As more information rolled out, it became apparent that while it has shared commonalities with viruses from the past; mainly, Severe Acute Respiratory Syndrome (SARS); it wasn’t the same – it had mutated. Several new names emerged, including Wuhan Coronavirus, 2019 Novel Coronavirus (a novel coronavirus is a new coronavirus that has not been previously identified in humans [7]), 2019-nCoV. Medical researchers seem to have settled on two names that best describe the situation we’re facing.

  • CoViD-19 – Coronavirus Disease 2019 [6]
  • SARS‐CoV‐2 – Severe Acute Respiratory Syndrome Coronavirus 2 – The virus that causes the Coronavirus Disease 2019. [6]

“Viruses, and the diseases they cause, often have different names. For example, HIV is the virus that causes AIDS. People often know the name of a disease, such as measles, but not the name of the virus that causes it (rubeola).” [6]

As the pandemic has spread across the globe, they are seeing differences from one place to another, but there’s still so much that needs to be known, and in our “everything is microwavable” world, we aren’t good at waiting patiently. We saw the numbers of infections and deaths rise in China and South Korea (both highly populated countries), and then we all heard the news that the curve is flattening and that they’re seeing substantially fewer new infections and deaths. At the same time, we’re seeing the virus wave throughout Europe. Deaths in Italy (who had some hindsight and time for preparation, and a smaller population) have now exceeded the death toll in China. This beckons the question, “is it the same virus or is it still mutating?” Is CoViD-19-China, the same as CoViD-19-SKorea, CoViD-19-Europe, CoViD-19-USA? As they figure things out, they’re going to have to look at data coming out of each location and compare. But we’re going to have to use wisdom and be prudent, while we all await the answers TOGETHER!

Most Coronaviruses only cause mild respiratory diseases (such as the common cold). Two Coronaviruses, Severe Acute Respiratory Syndrome CoV (SARS‐CoV) and the Middle East Respiratory Syndrome CoV (MERS‐CoV) did not follow the “mild respiratory” pattern and instead, they caused prominent upper respiratory tract issues. SARS‐CoV‐2 is believed to be attacking the lower respiratory tract.

 

Prominent Symptoms of SARS‐CoV‐2 (based upon the first‐hand evidence from Wuhan local hospitals): [8]

Fever (83%‐99%)

Dry cough (59.4%‐82%)

Shortness of breath; respiratory distress (~55%), with more than half (~46% to 65%) becoming “acute, highly lethal pneumonia requiring intensive care. About 46% to 65% of the patients in the intensive care worsened in a short period of time and died due to respiratory failure.”

 

The symptoms can occur between 2 to 14 days after being exposed to someone infected with the coronavirus, based on the incubation period of MERS-CoV (Middle East Respiratory Syndrome Coronavirus) viruses.

 

Other Symptoms Include: [8]

• Tiredness
• Aches
• Runny nose
• Sore throat
• Diarrhea

“Additionally, some patients with CoViD-19 have also [shown] neurologic signs, such as headache, nausea, and vomiting.” This is where it may get even more alarming for those of us that already suffer from neurological issues (and the thin blood-brain barrier demonstrated in EDS patients). With SARS‐CoV‐2 bearing so many similarities with SARS‐CoV and MERS‐CoV (and sharing the same beta coronavirus (βCoV) clade), they don’t know for sure where the similarities begin and end. Some coronaviruses are believed to “invade [the] brainstem via a synapse‐connected route from the lung and airways.” Both SARS‐CoV and MERS‐CoV now have supporting data demonstrating their ability to move beyond the respiratory tract and may invade the central nervous system. “The infection of SARS‐CoV has been reported in the brains from both patients and experimental animals, where the brainstem was heavily infected. Some coronaviruses have been demonstrated able to spread via a synapse‐connected route to the medullary cardiorespiratory center from the mechanoreceptors and chemoreceptors in the lung and lower respiratory airways.” [8]

SO, WHAT’S A MEMBER OF OUR COMMUNITY TO DO?

There is currently no vaccine to prevent CoViD-19, so the best way to prevent illness is to avoid being exposed to this virus. The virus is thought to spread mainly from person-to-person from close contact with one another (within about 6 feet), through respiratory droplets produced when an infected person coughs or sneezes.

[Note: We have found an entourage of good ideas that might prove helpful. When the sources are known, they are provided. As information continues to become available, the Center for Disease Control and Prevention (CDC) will be updating the list of recommendations on their site accordingly, so we encourage you all to stay informed by following them: https://www.cdc.gov/coronavirus/2019-ncov/prepare/prevention.html.]

 

 

STEPS TO PROTECT YOURSELF AND OTHERS:

• Wash your hands often (every 20 minutes) with a lathering soap for at least 20 seconds before rinsing. If soap and water are not readily available, use a hand sanitizer that contains at least 60% alcohol, covering all surfaces of your hands (both sides and between fingers), and rubbing them together until dry. [9]

• Avoid touching your eyes, nose, and mouth with unwashed hands. [9]

• Cover your mouth and nose with a tissue when you cough or sneeze or use the inside of your elbow. Throw used tissues in the trash. Immediately wash your hands with soap and water for at least 20 seconds. If soap and water are not readily available, clean your hands with a hand sanitizer that contains at least 60% alcohol. [9]

• Clean AND disinfect frequently touched surfaces DAILY. If surfaces are dirty, clean them with detergent or soap and water, prior to disinfection. Then disinfect with a bleach solution (recommended ratio: 5 TBSP (1/3 cup) household bleach per one gallon of water OR 4 tsp household bleach per one quart of water. *Note: Never mix household bleach with ammonia or any other cleanser.), alcohol solutions using a minimum of 70% alcohol, or other common EPA-registered household disinfectants with EPA-approved emerging viral pathogens (https://www.epa.gov/pesticide-registration/list-n-disinfectants-use-against-sars-cov-2). For more on disinfection guidance, visit: https://www.cdc.gov/coronavirus/2019-ncov/prepare/cleaning-disinfection.html [9] Some research is encouraging that you pay particular attention to cleaning metallic surfaces (refrigerators, toasters, doorknobs, etc.) thoroughly as these surfaces might be allowing pathogens to remain and stay viable for up to 9 days.

• Cancel all non-essential appointments and stay at home, even if you have no symptoms of the virus unless you’re having a medical emergency. If you are having a medical emergency, call 911 and let them assist you in properly assessing the situation and helping you get help if it is a genuine emergency (this is a very different day in time and many local 911 centers ARE NOT dispatching for non-emergent calls).

• If you must leave the house for essentials (groceries, pharmaceuticals, etc.), assume that everyone that you encounter as potentially infected and protect yourself (masks, gloves, hand sanitizers, etc.) and practice social distancing (maintaining a 6 ft distance between yourself and others, as much as possible). If possible, designate one person in the household that is not in the high-risk category (under 60 years old with no pre-existing conditions that might increase their risk) to do the essential errands of the household. When they venture out for these essentials, they too should protect themselves (for their sake and that of the family that they will be returning to) with masks, gloves, hand sanitizers, etc., whenever possible. Whoever leaves the house should lather up in a shower or bath and wash their clothes immediately after returning home (BEFORE sitting down or touch things around the house). Thoroughly clean and sanitize the bathroom afterward.

• If you have symptoms, DON’T PANIC. Stay home and put distance between yourself and other people (even those in your own household). Avoid common places in the house as much as possible. Use a separate bathroom if you can. If you can’t, try and clean things behind you each time that you use it. DO NOT GO DIRECTLY TO THE EMERGENCY ROOMS UNLESS YOU ARE HAVING A LIFE-THREATENING EMERGENCY. If you fear that you need to go to the Emergency Room and you have time, call them first for advice and that will also allow them time to prepare for your arrival in a way that considers your safety and the safety of everyone that you may come into contact with while there. If you don’t think it’s emergent, contact your primary care doctor by phone or email and inform them of your symptoms so they can assess your risk factors and advise you accordingly. Everyone that gets sick shouldn’t expect a test kit, because they ARE in short supply. If you’re healthy enough to be treated at home and recover without complications, you might not ever know if you had CoViD-19 or not.

• Try to avoid the use of all anti-inflammatory treatments right now (including NSAIDs), without checking with your doctor first. There are studies coming out indicating that anti-inflammatory treatments might counter antiviral treatments. NSAIDs, such as aspirin and Ibuprofen, can take up to 10 days to pass out of the body. If you end up needing an antiviral treatment, you might not have the 10 days to wait. [10]

• Don’t smoke or vape ANYTHING, especially right now, as they can further compromise your airway and lungs, abstaining won’t stop you from getting the virus, but it might help reduce the possibility of complications if you do.

• Drink lots of hot (but not scalding) liquids (coffees, teas, soups, warm water) and try to take a sip of warm liquids every 20 minutes to help keep your mouth moist and help wash viral pathogens that might be in your mouth (some reports indicate that they can stay in your mouth for 3-4 days before entering your lungs) down into the stomach where the gastric juices can help neutralize it before it attacks the lungs.

• Gargle once a day with an antiseptic in warm water (like saltwater, lemon water, vinegar water).

• Eat fruits and vegetables and try to safely elevate your vitamin C levels and zinc levels to help your immune system as much as possible.

• It’s okay to listen to the news, but don’t let it absorb you. Check-in for an hour or so and then turn it off or tune it out and decompress your mind. Stress can manifest in our central nervous systems and that usually includes an increase in pain levels. So, turn off the televisions and put on a song or two that makes you hopeful and happy, even if it’s short-lived.

• Stay connected with others. Use this time of isolation as an excuse to call an old friend and see how they’re fairing through things.

• Stay encouraged and try to encourage others around you. For many of us with chronic pain conditions, self-isolation is a way of life, but for those around us, it may be a new thing and that can be frightening. It is okay to tell them that you understand because this has become much of your reality, but don’t just leave it there. Remember how hard it is/was for you to adjust and tell them about things that you found to help and pitfalls to avoid, and maybe you can make plans to try and get out together once this is all over. This might create an ideal opportunity to better understand one another and heal broken relationships if you are willing to rise to the occasion.

 

References: 

1 “Implementation of Mitigation Strategies for Communities with Local COVID-19 Transmission.” Center for Disease Controls, <www.cdc.gov/coronavirus/2019-ncov/downloads/community-mitigation-strategy.pdf>.

2 Rodgers, Kyla R., et al. “Ehlers-Danlos Syndrome Hypermobility Type Is Associated with Rheumatic Diseases.” Nature News, Nature Publishing Group, 4 Jan. 2017, <www.nature.com/articles/srep39636>.

3 Henderson, Fraser C., et al. “Neurological and Spinal Manifestations of the Ehlers–Danlos Syndromes.” Wiley Online Library, John Wiley &amp; Sons, Ltd, 21 Feb. 2017, <www.onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31549>.

4 Cruse, Glenn, and Peter Bradding. “Mast Cells in Airway Diseases and Interstitial Lung Disease.” European Journal of Pharmacology, U.S. National Library of Medicine, 5 May 2016, <www.ncbi.nlm.nih.gov/pmc/articles/PMC4637266/>.

5 Driscoll, Diana. “The Driscoll Theory: The Role of External Communicating Hydrocephalus, Mast Cell Disease and CCSVI as the Cause of POTS (Postural Orthostatic Tachycardia Syndrome) in Ehlers-Danlos Syndrome.” The ILC Foundation, Apr. 2012, <www.theilcfoundation.org/wp-content/uploads/2012/04/Driscoll_Theory_EDS_-_Online3.pdf>.

6 “Naming the Coronavirus Disease (COVID-19) and the Virus That Causes It.” World Health Organization, World Health Organization, <www.who.int/emergencies/diseases/novel-coronavirus-2019/technical-guidance/naming-the-coronavirus-disease-(covid-2019)-and-the-virus-that-causes-it>.

7 Commissioner, Office of the. “Coronavirus Disease 2019 (COVID-19) Frequently Asked Questions.” U.S. Food and Drug Administration, FDA, <www.fda.gov/emergency-preparedness-and-response/mcm-issues/coronavirus-disease-2019-covid-19-frequently-asked-questions>.

8 Li, Yan‐Chao, et al. “The Neuroinvasive Potential of SARS‐CoV2 May Play a Role in the Respiratory Failure of COVID‐19 Patients.” Wiley Online Library, John Wiley &amp; Sons, Ltd, 11 Mar. 2020, <www.onlinelibrary.wiley.com/doi/abs/10.1002/jmv.25728>.

9 “Prevention of Coronavirus Disease 2019 (COVID-19).” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 18 Mar. 2020, <www.cdc.gov/coronavirus/2019-ncov/prepare/prevention.html>.

10 Stebbing, Justin. Published:February 27, 2020DOI:doi.org/10.1016/S1473-3099(20)30132-8 PlumX Metrics, et al. “COVID-19: Combining Antiviral and Anti-Inflammatory Treatments.” The Lancet, 27 Feb. 2020, <www.thelancet.com/journals/laninf/article/PIIS1473-3099(20)30132-8/fulltext>.

My heart hurts so much for you both, for so many reasons…

I have Ehlers-Danlos Syndrome (EDS) and many more conditions associated with EDS (comorbid to, or pathological of), including severe osteoarthritis, Degenerative Disc Disease, Tethered Cord Syndrome, Intracranial Hypertension, CSF leaks, Chiari Malformation, and more.

Ehlers-Danlos is a Hereditary Disorder of Connective Tissue (HDCT) that involves a mutation in our body’s collagen (the most abundant protein in the human body, often described as the “cellular glue” that holds our bodies together). It’s not unusual for patients to wait years or even decades for a correct diagnosis, because it is misunderstood and underdiagnosed. We suffer for years before a doctor is willing to diagnose us because it is a fairly rare condition and it is incredibly systemic in nature (affecting so many things throughout the body that it crosses from one specialty to the next). It can affect our joints, heart, brain, gut (and ability to properly metabolize foods and supplements), mast cells (tryptase/histamine levels), hormones, vision, hearing, and every organ and muscle inside of our bodies right out to our skin. The most common type of Ehlers-Danlos is Hypermobility Type (hEDS) and there is no genetic test to confirm or deny it, diagnosis is based on clinical evaluation. BUT THE PAIN IS VERY REAL AND EXTENSIVE!

Dr. Phil has the entire Ehlers-Danlos community (a well-organized community) up in arms about his flippant dismissal over your symptoms, since it’s obviously not his field of expertise. Although you clearly some depression going on. I hope that you both will benefit from the therapy he offered. Therapy is a good thing and can be tremendously beneficial when living with a chronic pain condition, especially over a lengthy period (which often ends up being a lifetime for EDS patients). The pain from Ehlers-Danlos is not psychosomatic and there’s no amount of counseling that will repair the wide-spread damage going on in our bodies (whether Dr. Phil realizes it or not). Unfortunately, knowledgeable doctors are hard to come by.  But they do exist, so please be encouraged and keep looking.

As with most chronic conditions, there are many things outside of our control that we need a medical professional’s help with (most of us live from one surgery to the next). We can’t change our DNA and since hEDS is believed to be autosomal dominant (meaning that only one parent need have it for it to be genetically passed on to a child), means that there is a very real possibility that both of your daughters will suffer from it one day as well. However, we ARE NOT POWERLESS IN OUR FIGHT! There are still things that we can do that are within the sphere of our control. I noticed that your daughter was giving you milk and what appeared to be a chicken sandwich on a bun (and the chicken appeared to be a frozen chicken patty). As mentioned, we don’t metabolize certain foods well, and dairy, processed foods, sugars (even sugar substitutes), gluten (and gluten substitutes), and complex carbs, in general, are all high on the list of things that we tend to have problems with. For the most part, we tend to have inflammatory reactions to them, and that inflammation isn’t distributed to just one part of the body; it can happen everywhere including in our gut, joints, back, and even the brain (especially anywhere there’s an injury). Increased inflammation means increased pain (and even brain fog).

I’m glad that Dr. Phil offered life-coaching and help from the PNP Center. I encourage you to take him up on it and get all that you can from it. Their knowledge of EDS is probably substantially limited and even if you “really have it,” they’re more likely to simply concentrate on behavioral therapy and ignore what is likely “really going on with you.” But I encourage you to get all that you can get from free services and then get ready to fight for a proper diagnosis and help with your pain and symptoms. THAT IS THE FIGHT!

I’m diagnosed, and I know the fight, so I can’t be as easily bullied by Dr. Phil. It’s a hard life to live and depression (including suicidal thoughts) is common in our community. Nobody “wants” to endure a life of pain. Nobody “wants” to burden their family members. I work from home the best that I can, in between medical procedures, but for the most part, my husband is my caretaker (something else that Dr. Phil has dishonored on one of his previous shows). My father helps and so do my adult children (as they can). Even my five-year-old grandson understands that grandma is sick. He knows that he needs to be careful around me (he says that his “grandma is made of glass”). When I drop something, he’s eager to help me reach it. It’s not ideal, but it’s real-life (something that Dr. Phil appears to have forgotten). I’m very blessed to have the support of my family. I am honored to have their support and understanding (although I’ll admit, I’m not always good at showing it). My children knew that their mom wasn’t well from a young age. I became symptomatic at age 29 and it took ten years for my first diagnosis, and another five years for me to be correctly diagnosed with an underlying connective tissue disorder (EDS). It was hard on all of us, especially before my diagnoses started rolling in. (And I say “rolling” loosely because most of the diagnoses aren’t easy to get). We tend to spend many years complaining of each problem before a doctor cares enough to listen so we can get properly diagnosed – and those diagnoses usually all end up related to the EDS in one way or another. But as disabled moms (and grandmas), we continue to do our best to love our families back and do what we can when we can to help lighten their loads and ease their burdens. Some days I can help more than others, but on the days that I can, I do. And even when I can’t, I still have value in this world as their mom, and SO DO YOU (even though I realize that you probably don’t feel like you do right now)!

Honor and respect don’t seem to have been a priority in your relationship, and that’s sad. Despite the thanks that you give her, nothing demonstrated your lack of gratefulness for all that she’s sacrificing for you, in that you stole from her. In doing so, you dishonored the love that she’s been giving you. You showed contempt for her love. Even if you never established direct boundaries, I believe that you knew that you were crossing a line. No amount of depression can justify what you did. It hurt her and love protects, it shouldn’t intentionally hurt. That’s going to have to be something that the two of you will need to work on healing together… BUT YOU CAN HEAL FROM THAT!

Cheyenne, if EDS really is in the genetic line of your family, it’s not just going to go away by sending your mom away. You probably need help with healing your heart before anything else, and you definitely need to establish healthy boundaries with your mom (whether she lives with you or not). If that man of yours really loves you, he’s going to have to have to learn to love you through EDS, because the likelihood of you (or your kids one day) becoming symptomatic is high. If he doesn’t love you enough to honor your love for your mom, then he’s not likely to love you (or your children) through symptoms and pain should you become symptomatic. When you marry and say, “I do,” it’s just that, “for better or worse.” It’s not an “I will, if you…” situation. And his momma, boy I have some words for her that I’ll just keep to myself. I realize that she’s trying to love you the best that she can in the situation that you’re in, but people who have no understanding of something shouldn’t be presumptuous enough to say something on a topic outside of their understanding. If she doesn’t believe your mom’s symptoms, she won’t likely believe your symptoms later should they develop. If she was presumptuous enough to talk about your mom and her symptoms behind her back (since she doesn’t even know her), she will likely talk about you and any symptoms when/if you develop them, behind your back as well.

In closing, I’d like to say that despite all that you have gone through TOGETHER, I hope and pray that you don’t throw it all away. You really could be an amazing MOTHER/DAUGHTER DUO that takes life (and all that it throws your way) by storm TOGETHER! It will take a commitment from each of you to stay connected and establish and respect healthy boundaries in the future. Those boundaries are healthy for both of you and are built on love and respect, not on guilt and manipulation. I run several things in our community that might be able to help empower you both, but whether it’s through me or anyone else, I sincerely wish you all the best in this difficult hand that you’ve both been dealt.

Best Regards,
Michelle Cole

Note: This letter is in response to an episode that aired on February 25, 2020. While Dr. Phil only has segments of the episode on YouTube, somebody does have it posted in its entirety here, should you wish to watch it. LINK

Making homemade stockings and cutting flowers for wreaths.

Baking treats and devouring them with hot cocoa by the tree that we spent hours decorating.

Shopping for just the right gifts and wrapping them meticulously, just to make those I love would know how special they are.

I remember all the traditions that we did together as a family before my symptoms hit hard.

Now, I am reduced to shopping the internet for gifts, but still, I do the best I can to find something special.

I usually start out trying to help decorate, just to end up on the couch watching everyone do what I can no longer do.

I sit here and watch despite the pain I feel from the few decorations I put on the tree because I so want to stay a part of things as much as I can,
while I can, even if it’s nothing more than a shadow of what I once was.

Do they know how much I still long to be a part of it all? How much I long to be a part of them?

I sit here and as I ponder how much things have changed and all that I am now, I find myself stuck in my head.

Do they see how stuck I am?

Do they see how afraid I am, that each holiday might be the last that I have with them, and they have with me?

I’ve got to get out of my head and be present.

The best present that I can give them really is just me, fully engaged in showing them that they’re the best that has ever happened to me!

When a Chiari woman passes away it changes so much for so many.

It leaves a hole in the hearts of the Chiari community because, even as dysfunctional as we are sometimes, we know we’re all in this together!

  • We know what it’s like to have conditions that so few understand, including our doctors.
  • We know how humiliating it is to watch our bodies change and our muscles deteriorate as we fight just to hold up our heads, even for just a few hours a day.
  • We know what it’s like to have our symptoms and pain consistently dismissed as psychosomatic.
  • We know what it’s like for doctors to say how easy the surgery will be only to find out that they had no clue of what they were talking about.
  • We know the heartbreak we feel when those we love the most choose to believe our doctors instead of us.
  • We know what it’s like to be told that the surgery cured us, while everything in our heads and necks seemingly rebel in disagreement.
  • We know what it’s like to have to fight for every aspect of our treatment, from imaging to specialist, and still have help denied to us.
  • We know what it’s like to have to find strength through the pain each day and still try and carry on the best that we can for those that we love so much. We long more than anything to get back to who and what we once were. To run and jump and enjoy life with those we love most, but the pain is too overwhelming. The truth is that those times that we did try left us in even more pain; so, we are forced to learn to choose what we do wisely.
  • We know the genetic nature of what we have, even if our doctors don’t, and we all long to figure it all out and fix this very broken medical system that relies on information that is centuries old, before our children and their children are forced to face what we face.
  • We know what it’s like to live in fear of leaving all those we love, as they are our reason for living.

It leaves a hole in the hearts of her family that should be respected.

To them she is so much more than a Chiari Woman, she is my wife, my mother, my daughter, my grandma, my sister, my aunt, and the love of my life.

Chiari didn’t just rob their loved one, it’s robbed the entire family for years.

They too have longed for what was and often cried behind closed doors for all that likely would never again be.

Her husband has had days where he was so petrified at the thought of losing her. Sometimes that fear manifested as anger and frustration, but it wasn’t her that he was really mad at; He was mad at the Chiari that was taking his wife from him. He regretted those words from the very minute that he gazed upon her eyes as she heard them. He couldn’t make her forget those words, they pierced her soul too deeply, so he internally committed to just try and show her why he loves her. Despite his frustrations with the situation, he admired this amazingly strong woman who was facing more pain than he could ever understand. He’s cried out to God privately for this soul mate that he committed to so many years ago. He feared losing her and he did not know how he could ever hold everything together like she did, but he had to try because there was so much was on his shoulders. He never talked much about the weight he carried in it all, because he knew what she was facing was already more than she could handle. So, he learned to grieve as silently as he could – to understand what he could, to empathize as he could, to remain as strong for her and the family as best as he could.

Her children have learned to grieve in silence as well. They learned to face life and all the obstacles they faced without making waves at home. How could they? They saw the pain that flared when things had stressed her in the past. They didn’t want to cause that again. They longed having the mom that they used to have, the mom with the strength to climb every mountain with them, the mom that made every challenge in life seem conquerable. They admired her strength and never understood how they could admire so much in her yet hate the fact that she wasn’t always there for them anymore. Even when she so desperately tried to be there the brain fog often dominated and took over the conversation entirely, this conversation that she probably wouldn’t remember for long. They resented her for it but knew that it wasn’t her fault. Like everyone else that loved her the most, they said so many things that they regretted. They knew that they often came across like they hated her, but the real truth was there was no one in the world that they longed for more. They’ve always hated seeing her in pain, yet her pain served as a constant reminder of the future that they feared in their future. They remember when she told them about the hereditary nature of the genes passed on to them, with tears in her eyes. Would they have what she had? Would they become as symptomatic? Would they have the courage to fight it as valiantly as she did? Should they have children one day? The reasons for concern were endless.

Depending on when she became symptomatic, her parents have likely spent endless days and nights in hospitals and emergency rooms. They’ve spent years learning all they could and even learned to recite her diagnoses with detailed explanations because they’d became so accustomed to these conditions that so few doctors could pronounce, much less treat. For years they made sure to always have her complete medical chart in hand with official documentation, in case they were challenged by a medical professional or anyone dared to call their daughter “a drug seeker” or “psychosomatic.” They spent countless hours trying to dull the tortuous pain they saw her go through, and spent many more hours researching creative home remedies to give her a sense of relief, even if it was only momentary. There were times they prayed for God to just go ahead and take her, so she wouldn’t be in anymore pain; and then felt guilty for even thinking it. Then one day the screaming stopped, the pain was gone, but with it so went their daughter.

As Chiarians, we all deal with thoughts of death more than “normal” people and “normal” families. We go from surgery to surgery knowing that this might be the surgery that ends our fight altogether, yet we hold on to hope that it will be the surgery that helps us to be all that we’ve yearned to be once again. Our community has found strength in our unity. As we remember those we’ve lost and face our fears about our morbidity, let us continue to unite to change this for us and our future generations that we love so much.

*This article is dedicated to all the Chiari Angels and their families, as well as those that are still fighting the fight. Hold your families close; forgive quickly and as often as necessary. We never know how much time we have and we usually never really know how much we’re truly loved until it’s too late.

**Note: This article was not to leave out all of our valiant Chiari brothers fighting the fight, it was just easier to write from one point of view.

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Like any marriage, we’ve had our rocky moments. We’ve both showed our ugly sides more than we like to admit. I’m not sure when he changed, but somehow along the way in our 27 years of marriage, my husband morphed into this amazing man who is EXACTLY what I need in every way!

My husband doesn’t have the same responsibilities that most husbands have. He works full-time to provide for his family and does more than his fair share of household chores. But my husband has a wife with several chronic conditions. He has a wife that has been in some level of pain almost every day for over 18 years! He’s seen me through ten surgeries since we’ve been married, eight of them being in a five-year period. That is enough to exhaust the strongest of men, but exhausted or not he has stood by my side through all of it.

I first became symptomatic following a car accident. We were both 29 with three young kids (ages 2, 5 and 8). I was initially diagnosed with double whiplash, but when that failed to get better, I was left with no reason for why I couldn’t hold up my head. It felt like my neck lacked the strength to hold up my head for more than an hour at a time and on some days, not even that. To add insult to injury, I went without a diagnosis for over a decade. It couldn’t have been easy to stay by my side when all the doctors were saying that they couldn’t find anything wrong with me.

Over our decade without answers, I continued to decline. I started having severe cognitive decline and memory loss. I’d have periods of time where I lost my ability to walk and use fine motor skills (so I couldn’t write or pick up small things). He helped me walk to my classes and even helped me do my homework when I couldn’t write. He didn’t have the answers, but he knew that I desperately needed them, and he was determined to stay by my side even though by doing so it was putting an unfair burden on him. He didn’t have the help-meet that he needed in life. He just had this sick, scared wife, with no means to any end to her suffering.

When I was finally diagnosed, the choice for decompression was an easy one. It was 2010 and I was now 39 years old. I had lost 10 years and the possibility of getting my life back and engaging as a wife and mother again was something that I couldn’t pass up. We never expected this “easy surgery” to take the turn that it did. We knew that there was a chance that it would be unsuccessful at relieving all of my symptoms, but never in a million years did we think that decompression would open Pandora’s Box on my need for surgeries. From 2012-2015 I needed seven additional surgeries. Each surgery had its own recovery and complications. And with each additional surgery, I became increasingly dependent on my husband for help, but not once did he complain. This was affecting his life too, but not once did he concentrate on that. Not once did he think of it as being unfair to him to have to care for me, even though it really was. I’m now covered with scars on my left side from my neck to my groin, one night he raised my pajama shirt and gazed intensely upon them. He started kissing them. When he got to the scars covering my stomach, I pushed him away and with tears in my eyes, I told him that I wasn’t comfortable with him touching me there. He looked me in the eyes and told me that he didn’t see me the way that I see myself. He said that when he sees my scars, he’s reminded of all that I’ve had to fight through and what a strong woman he’s married to. “I wish that you could see yourself the way that I see you,” he exclaimed. All my insecurities just melted with his words of affirmation.

This man who vowed to love me for better or worse, richer or poorer, in sickness or in health, really meant it, and those vows were continually put to the test every day of his life. And he wasn’t seeing the polished-up version of me that others tend to see. He saw the frustrated me, the defeated me, the hopeless me. The me that went from one pair of pajamas to another. The me that gained over a hundred pounds on nerve meds that ultimately made me worse. The me that started to stutter and slur and hated myself for it. The me that drooled in front of people and whose nose ran uncontrollably when I sat down to eat. The me that lost control of both her bladder and bowels and that had to wear a diaper for years. The me that no longer could wipe herself or shower without his help. The me that took so much of my pain and frustrations out on him, when he’d take all of it upon himself in an instant if he could save me from it. Not only does he not complain or criticize, but he became my biggest cheerleader in life!

He listened to me as I read studies to increase my knowledge on what I’m facing. He lets me yell to him about the incompetency of doctors. He’d make small jokes to help me make light of the seriousness at hand. When he forgot things, he’d say that he was having a “Chiari moment.” I’d remind him that he wasn’t the one with Chiari and he insisted that it was sympathy pains. When he developed a herniated cervical disc and we looked at his MRIs together, the first words that came out of his mouth were, “well, I don’t have a Chiari Malformation,” as he pointed at the cerebellar tonsils. I often feel so unworthy of his love, yet if you talked to him, he’d tell you how unworthy he is of my love.

There’s no denying his real role in my life; he’s my hero!

*This article is dedicated to my husband, Johnny (my hero and the love of my life) and to all the other couples trying to hold a marriage together through this crazy fight we face.  

When I was first diagnosed with Chiari Malformation, I believed everything that my neurosurgeon told me. I was originally diagnosed with a Chiari 1 Malformation. I was told that it was congenital and due to my mother either using drugs or not getting proper prenatal care, which was crushing to hear, but not all that unlikely since I was born in the early 1970s. Little did I know, that these assumptions weren’t based on my findings, but on what textbooks have said since before the advent of the MRI in the early 1980s. Sadly, the percentage of Chiari patients that are given these same faulty assumptions remains near 100%. It didn’t take much time after my decompression surgery for me to realize, that it wasn’t quite as easy or cut-and-dry as it had been made out to be. When you have a connective tissue disorder, that is the root cause behind your Chiari diagnosis, the risk of postoperative complications is high, especially when pathological conditions went undiagnosed and untreated when the decompression was done. The difficulties of having a genetic mutation that can cause problems throughout your entire body, can make a patient seem like a hypochondriac, and that is exactly what most doctors think when they have a subpar understanding of Ehlers-Danlos Syndromes. When something goes wrong structurally, it can cause a cascading effect that manifests throughout the body. We go into the Chiari fight understanding that something is wrong with our brain and neck, but when it crosses over to problems with the autonomic nervous system (for instance), we don’t realize that the continued compression on our brainstem is why our hearts are now beating so fast, why we are now so short of breath, or why we are having fainting spells. We find ourselves wishing for someone, or a panel of experts to help us navigate through it all. While it is still far from the panel that we really need, Palliative Care can offer help with some essentials.

What is Palliative Care?

Palliative Care (pronounced “pal-lee-uh-tiv” care) is a subspecialty of medical care, where an interdisciplinary team of professionals (both medical and social) are committed to helping provide “relief from symptoms and stress” for patients with serious, life-altering illnesses, and their families. [1] Palliative Care is “supportive care,” by professionals committed to you as a patient with a serious illness! Your Palliative Care Team generally consists of a Palliative Doctor, a nurse, pharmacist, social worker, nutritionist, and a chaplain [2] (all as needed). Together, they will seek to:

  • Ease symptoms and/or help control pain to relieve suffering
  • Help improve your quality of life
  • Help coordinate with your care team
  • Assist with stress, fears, anxiety, and/or depression in the patient, caregiver, and/or family
  • Help you create a plan for end-of-life care (directives)

 

Benefits to Palliative Care:

  • Both Chiari Malformations and Ehlers-Danlos Syndromes are relatively complex. Both conditions can spur a vast array of symptoms. One of the objectives of your Palliative Team is to help you find a way to alleviate symptoms and/or help you with coping mechanisms through them.
  • Because Palliative Care is designed for patients with “serious” medical conditions, being accepted as Palliative Care patient, means that they recognize the seriousness of our condition. For those of us that have spent years/decades with our symptoms being dismissed, this alone is no small thing.
  • The CDC Guideline for Prescribing Opioids, as well as many of the state laws regarding the same, have exemptions for palliative patients (along with cancer and end-of-life patients). Doctors can still decide to discontinue prescriptions, taper your prescriptions, or require an “opioid contract,” but it will be 100% by their choice, and not due to CDC Guidelines and laws. Although, you may have to tell them that. [4]

 

Misconceptions Surrounding Palliative Care:

  • While it is outlined in the U.S. Department of Heath & Human Services (NIH) under the “National Institute on Aging” (NIA), there is NO AGE CRITERIA to qualify as a Palliative Care patient. [1]
  • While Palliative Care is frequently listed beside Hospice Care and/or End-of-Life Care, there is no national requirement for a patient to be in an end-of-life situation (or even an expected early demise). [1] Hospice care falls under palliative care, but palliative care expands beyond the scope of just hospice. Palliative care may begin at any stage of a serious illness. [2]
  • You can continue treatments (even curative treatments) with your personal doctor/specialist, while receiving palliative care. There is no “incurable condition” requirement for a serious condition under palliative care. [2][3] In fact, a patient can qualify and receive Palliative Care whether their illness is curable, chronic or life-threatening. [2]
  • You do not need to wait until your condition reaches a certain level of severity, you can start with Palliative Care at any stage of your illness. In fact, Palliative Care works best when it begins as early as possible in the illness, as some symptoms may be avoidable or more manageable if addressed early.
  • Palliative Care does not replace or override your pain management doctor, or any of our doctors for that matter. Instead, we give them permission to discuss our case with our medical professionals, so they can help coordinate our care, especially in regard to our pain/suffering and quality of life care.
  • Your Palliative Care Team will not consist of the medical specialists that we specifically need, but they can help navigate you to the type of doctor you may need and discuss these recommendations with your doctors.

 

Problems Surrounding Palliative Care:

  • Primary Care Doctors (who are supposed to be offering referrals to Palliative Care for their patients with serious medical conditions) often fail to fully understand the spectrum of Palliative Care. Because of their faulty understanding, most of us are never offered Palliative Care, and when we request it, we are often told that it is equivalent to hospice care or set aside for hospice patients, and therefore they believe that we do not qualify. THEY ARE WRONG!
  • Our medical professionals often fail to recognize just how “serious” of a condition and life-altering Chiari and EDS really are (on us as patients and on our families).
  • Not all insurance companies cover Palliative Care. Because some insurance companies fail to see the seriousness of our conditions, qualifying may be difficult. Private insurance and HMOs are more likely to offer Palliative Care. Different states have different policies regarding the level of Palliative Care (if any) they offer. [2] If cost concerns are an issue, the social worker on your Palliative Team can assist you in ways that might help you qualify. [3]

 

 


References:

1. “What Are Palliative Care and Hospice Care?” U.S. Department of Health and Human Services, National Institute on Aging, 17 May, 2017. <https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care>

2. “Frequently Asked Questions About Hospice and Palliative Care.” American Academy of Hospice and Palliative Medicine. <http://palliativedoctors.org/faq>

3. “Handout for Patients and Families.” Center to Advance Palliative Care. <https://getpalliativecare.org/handouts-for-patients-and-families/>

4. “CDC Guideline for Prescribing Opioids for Chronic Pain.” Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, Division of Unintentional Injury Prevention. 29 Aug, 2017 <https://www.cdc.gov/drugoverdose/prescribing/guideline.html>

FOR ALL MY NON-CHIARI FAMILY MEMBERS AND FRIENDS… I’m going to cuss, but I really NEED you to listen to this and just try to understand:

I know there’s absolutely NOTHING I can say to help you understand the pain that I go through; what it feels like to have pain all the time, in places that I didn’t even know that I could have pain in. To feel like someone is grabbing the back of your skull at your neck and literally trying to pull your skull right off of your head. I know there’s NOTHING I can say or do, to tell you how discouraging it is to have doctors tell you that they have “no idea why you’re hurting so bad,” and suggest that you should see a therapist, because obviously, if they don’t see it, it must be just psychological. And while I know your intentions are good and I know that you love me, I CANNOT think of anything to say to help you understand how incredibly hurtful it is to have those that are supposed to love you the most, those shoulders that are supposed to be there for you to lean on, tell you that you’re having a pity party, or  how they “wish you wouldn’t talk about it all the time” (and sometimes it’s not said that nicely either). And for MY KIDS and HUSBAND to have to carry so much on their shoulders and to feel like they have nobody to talk to about it, because everyone’s “tired of hearing about it.” And worse, since it’s genetic, for them to see how you treat me in my pain, and fear that if they’re diagnosed, that you will treat them the same.

You don’t understand, but my brothers and sisters with Chiari do. They understand it all, because they’re living it too. I know you don’t understand the bond that we have, but even though we’ve never met face-to-face, we’ve cried so many tears, and prayed through so many surgeries together; we’ve lost friends together while doctors still try and claim that Chiari can’t kill you (even with death certificates that say Chiari in hand). We’ve lost friends that just couldn’t take the pain anymore, and we cry together because we know that those thoughts have been our own and we struggle to find a way to keep pressing on, together! I know you don’t understand the bond, but it’s real.

I’m not saying all this to make you feel bad, God forbid you feel bad, I’m saying this because I STILL NEED YOU. You weren’t put in my life by mistake and what I’m going through physically and mentally is frightening and heart-breaking and I need you here by my side. You think you don’t have time to see me through all these surgeries and diagnoses, I don’t either. There’s so much more that I wanted to do with my life and now I just want to hold my head up without pain. I NEED you to change your heart towards me and all that I’m going through. I need you to call me, and just love on me. I need you to remind me of all that I am, despite my pain – that I’m stronger than I often feel like I am. I need you to remind me that there is still value to me still being here on earth. Because in those dark moments, when I look at all I’ve lost and everything that my family has lost through this fight, I need to hear it in someone’s voice besides my own. I need you to remind me how important it is that I fight this vigilantly, so that if God forbid one of my kids have to fight this fight, I will be the best possible advocate I can be for them. They’ve missed out on so much with me being sick. And should my fight on earth come to an end, I need you to stick to them like glue, and help them know how fantastic they are and that they’re not alone. Remind them that their stronger than they think, just like their warrior mom! Remind them that they have a purpose and a destiny to fulfill on earth, and to not to let anything stand in the way of that. If they get knocked down, pull them up again, every single time! Don’t worry, I’m not planning on going anywhere, this isn’t a suicide note or anything. I still have every intention of changing this fight of mine and winning it. But it’s hard sometimes and I really need you to fully understand how much I NEED YOU! Help me win this!

***Michelle originally wrote this on Facebook in 2016 and the response from the Chiari community was astounding. What was astounding was not that so many liked it, but that so many Chiarians resonated with the heartbreak of it. It has been slightly edited for publishing. It was originally written with explicit language, that we at Chiari Bridges felt was a “most accurate” representation of the raw emotions that so many of us feel when we encounter these types of struggles in our family dynamics. However, this “clean” version is being created, for those to that are not comfortable sharing content with “strong language,” but still relate to the article and wish to share it.

 


FOR ALL MY NON-CHIARI FAMILY MEMBERS AND FRIENDS… I’m going to cuss, but I really NEED you to listen to this and just try to understand:

I know there’s absolutely NOTHING I can say to help you understand the pain that I go through; what it feels like to have pain all the time, in places that I didn’t even know that I could have pain in. To feel like someone is grabbing the back of your skull at your neck and literally trying to pull your skull right off of your head. I know there’s NOTHING I can say or do, to tell you how discouraging it is to have doctors tell you that they have “no idea why you’re hurting so bad,” and suggest that you should see a therapist, because obviously, if they don’t see it, it must be just psychological. And while I know your intentions are good and I know that you love me, I CANNOT think of anything to say to help you understand how fucking incredibly hurtful it is to have those that are supposed to love you the most, those shoulders that are supposed to be there for you to lean on, tell you that you’re having a pity party, or  how they “wish you wouldn’t talk about it all the time” (and sometimes it’s not said that nicely either). And for MY KIDS and HUSBAND to have to carry so much on their shoulders and to feel like they have nobody to talk to about it, because everyone’s “tired of hearing about it.” And worse, since it’s genetic, for them to see how you treat me in my pain, and fear that if they’re diagnosed, that you will treat them the same.

You don’t understand, but my brothers and sisters with Chiari do. They understand it all, because they’re living it too. I know you don’t understand the bond that we have, but even though we’ve never met face-to-face, we’ve cried so many tears, and prayed through so many surgeries together; we’ve lost friends together while doctors still try and claim that Chiari can’t kill you (even with death certificates that say Chiari in hand). We’ve lost friends that just couldn’t take the pain anymore, and we cry together because we know that those thoughts have been our own and we struggle to find a way to keep pressing on, together! I know you don’t understand the bond, but it’s real.

I’m not saying all this to make you feel bad, God forbid you feel bad, I’m saying this because I STILL NEED YOU. You weren’t put in my life by mistake and what I’m going through physically and mentally is frightening and heart-breaking and I need you here by my side. You think you don’t have time to see me through all these surgeries and diagnoses, I don’t either. There’s so much more that I wanted to do with my life and now I just want to hold my head up without pain. I NEED you to change your heart towards me and all that I’m going through. I need you to call me, and just love on me. I need you to remind me of all that I am, despite my pain – that I’m stronger than I often feel like I am. I need you to remind me that there is still value to me still being here on earth. Because in those dark moments, when I look at all I’ve lost and everything that my family has lost through this fight, I need to hear it in someone’s voice besides my own. I need you to remind me how important it is that I fight this vigilantly, so that if God forbid one of my kids have to fight this fight, I will be the best possible advocate I can be for them. They’ve missed out on so much with me being sick. And should my fight on earth come to an end, I need you to stick to them like glue, and help them know how fantastic they are and that they’re not alone. Remind them that their stronger than they think, just like their badass mom! Remind them that they have a purpose and a destiny to fulfill on earth, and to not to let anything stand in the way of that. If they get knocked down, pull them up again, every single time! Don’t worry, I’m not planning on going anywhere, this isn’t a suicide note or anything. I still have every intention of changing this fight of mine and winning it. But it’s hard sometimes and I really need you to fully understand how much I NEED YOU! Help me win this!

***Michelle originally wrote this on Facebook in 2016 and the response from the Chiari community was astounding. What was astounding was not that so many liked it, but that so many Chiarians resonated with the heartbreak of it. It has been slightly edited for publishing. What was astounding was not that so many liked it, but that so many Chiarians resonated with the heartbreak of it. It has been slightly edited for publishing. It was written with explicit language that we at Chiari Bridges felt was a “most accurate” representation of the raw emotions that so many of us feel when we encounter these types of struggles in our family dynamics, and therefore the decision was made to publish it in its raw form.

 


Like most of us, when my symptoms started, I felt very alone. I was blessed to have family and friends that helped me through and cheered me on, but there was a part of the fight that only those directly going through it can understand. At that time, online support groups were far from what they are now. The support groups have definitely improved, but there is still so much more that we need. We need knowledge of the studies that are already out there! We need hope for the future! We need training in self-advocacy! We need help in trying to get our bodies and minds as healthy as we possibly can, because like it or not, things can get much worse than they already are. It was from our desire to help meet those needs, that the Chiari Bridges vision began!

Empowering With Knowledge!
Chiari Bridges aims to challenge everything we have been taught about Chiari and its comorbid conditions, and write about them in a way that makes them easier to understand. Although, because we know how hard it can be to get our doctors to listen to us, we will do everything we can to supply the studies behind the facts that we write about (that is why our citations are in red, so they are not overlooked). Knowledge is power! Once we as a community have a better understanding of all that is likely to be going on in our bodies, we can arm ourselves with the studies and take them to our doctors and show them the standard of professional knowledge that we expect! The bar has to be raised, for our radiologists and doctors alike, and they are not going to raise the bar for themselves. We have to inspire them to do that and we are going to raise the roof until they do!

Raising Our Bar!
One of the biggest problems we see amongst Chiarians is that our broken bodies have degraded our spirits and our confidence. It is time for us to learn to believe in ourselves once again! The doctors that we were taught to respect, got their knowledge by studying. And many have dropped the ball in their studying, yet they continue to operate on our brains, answer our questions with wrong answers, and deny our symptoms, knowing that they are not knowledgeable at all of our condition and its comorbidities. They like to “act” like we are crazy enough to think that we could wrap our brains around medical concepts that their narcissistic disorders incline them to believe that only medical professionals could understand. Well, they truly have underestimated the reality of all that our big brains can truly accomplish! We cannot let their ineptitude become ours, because it is our brains on the line, not theirs! We plan on creating a venue to share about our doctors, the good and the bad, in a way that decreases the potential for legal liability. We have a right to share our experiences – we just need to do it in the right way.

Encouraging Hopes and Dreams!
When it comes to conditions such as ours, the first things to come under attack is our hopes and dreams for the future. Even when we start out being hopeful (often because our doctors understate the significance of what has happened to our bodies), by the time we are decompressed and we find that we are still symptomatic, those hopes and dreams quickly diminish. I have been quoted as saying, “If Chiari has stolen your dreams, dream again!” I still believe that and have been in a constant state of having to practice it. We may not be what we originally wanted to be, but if we continue to see all that we can do and not just what we cannot do, we can dare to dream again! We are all multifaceted human beings with broad gifts and talents. We might not be the athletes we once aspired to be, but that says nothing of our strength. We all have the potential to change the world around us! You might be an artist that hasn’t practiced your art in years – start practicing again! You might have always thought about writing books, but because of your diminished hope for the future, you haven’t written in years – pick up a pen and start writing again! The only way to ever know your true potential is to try and try again! Dare to dream again! 

Helping Chiarians Thrive!
While I cannot go into much detail on this topic right now, we do have plans in the works to help encourage Chiarians to gain back a sense of control and live out their passions. Some have already started, as we aim to encourage help with self-advocacy, health and fitness, political lobbying awareness, and the like. But we also plan on encouraging Chiarians to start those businesses that have been on their hearts for so long (not multi-level marketing ploys either, but authentic, heart-inspired, creative businesses), and helping get the word out that it is Chiari owned. We as a community can accomplish so much more, but we need to work together to do it, and start applauding one another instead of tearing one another down! We all need a new chapter in our lives, where we overcome and succeed in the things planted in our hearts! 

Passion and Motivation to Create Change in Our Community!
When we first embarked on building this bridge, I realized that my vision was much bigger than my ability to do it alone. Therefore, I sought out certain people within the community that were passionate about specific aspects that can help our community as a whole. Some loved the idea and still serve on the Chiari Bridges team. Some are on the team and just starting to give birth to all that is in their hearts to accomplish. (I absolutely love fresh ideas and fanning the flame until they happen!) Not everyone loved the idea though. Some saw it as a threat to their own projects. They mocked me and one called me “&*%@ing crazy” (she had no idea how right she was). Instead of taking us up on the offer, she made every attempt to try to stop us, and she and her friends have been reporting every image that we use and claiming it as their images. (Good luck with that!) If wanting to create change makes me crazy, I will gladly wear the crown! Let them talk and let’s do this anyway! While they are busy gossiping, we see an increase in Chiarians losing their battles every year. Last year, two of my good friends ended their fight. That’s two too many! We have no desire to compete with anyone or any other non-profits, especially the ones that serve to try and benefit (and not exploit) our community (that childishness has only served to hurt our community). We actually want to cheer on those organizations, individuals and groups in what they are doing and do all we can to help generate support in their efforts. There really is enough need in our community for them to do what is in their hearts to do and still be active and true to what is in our hearts to do. If you have passion and motivation, and just need an outlet or help doing it, tell us about it. It takes a village working together to bring about change!

Oh, and by the way, our vision for change is global! Our bar is not low. We aim to change the world and want to connect with those who desire the same!

Michelle Cole
President, Chiari Bridges, Inc.

 

Bridges are built as a means to assist people in getting over the things that obstruct their path. We are constantly facing obstacles when it comes to our health, so we decided to build a bridge! Chiari Bridges is a non-profit network built by Chiarians for Chiarians. Our goal is to provide information, substantiated by published studies, in a way that is easy to understand. We encourage readers, to not only read our articles, but look up every study for themselves and read that too. Print it out and sit down with a highlighter; read it as many times as necessary until you understand; then use it to talk to your doctors. Our doctors are under no obligation to read our articles, but they should be willing to read officially published studies from journals, especially those specific to their profession. As many of our authors are patients as well, all authors sharing original pieces will be writing under pseudo-ghost names, to protect them from being black-listed by their doctors. Chiari Bridges is not affiliated with any physician or medical group. You should in no way use this site as a replacement for diagnosis, treatment, or medical from a qualified medical professional. The information provided on our website is strictly for educational purposes, in order to help further the understanding of Chiari, and its associated conditions. Our goal is to share our collective experiences and the information we have gathered, with those in need of answers, that it may increase your knowledge and guide you in conversations with your doctors.