The cracked Zebra

Day 25 – Behind The Scenes For many of us the behind the scenes footage would be drastically different from day to day. Even from event to event. I really like being as mobile as possible so I do what I have to to make that happen. Around the house, I will wear my afo’s (or not.) If I don't I will have more leg pain the next day if I walk around too much. If I am having a bad pain day and don't plan to move much I will just not wear them. Once I put them on though that's it for the day. They don't come off again until I know for sure I don't need to leave the house. My feet have a tendency to swell so if I take them off too soon I may not get them back on. I also wear who’s (wrist, hand orthosis) I had never heard this term, and it always makes me think of Whoville…Anywho…I wear these to keep my unstable thumbs in place and to support my wrists which are quite weak. I usually wear these all day every day with the exception of cooking and wa...

Day 24 – Helpful Advice You’ve Had  There is a lot of advice out there. I often get told my symptoms would be healed if only I tried… yoga, herbal supplements, going vegan, going gluten-free, praying harder, or trying this strange fruit only found in a far-off land.   The truth is to do whatever works for you. That is my biggest piece of advice.  Many of us have to go through a grieving process of abilities lost. This is a hard concept for many to grasp. It's even harder when it is an ongoing process. We grieve, start to come to terms with our loss, and learn to move on with life. Then the rug gets pulled out from under us yet again with another symptom or another loss of ability. It is such a frustrating cycle for us so I can't imagine that someone on the outside looking in can truly understand unless they have experienced a similar cycle. After the grief lessens a bit it's time to learn new ways of doing things. Using assistive devices to open th...

Day 22 – Your Advice For Someone Newly Diagnosed Understanding complex conditions such as EDS and HSD can feel overwhelming, especially for the newly diagnosed. For me, it was a mix of being overwhelmed by all the information and a rushing feeling of everything in life finally making sense.  The relief was refreshing and washed over me like a wave of knowledge and power. I had a name for something that ailed me. It wasn't depression or anxiety and it was most definitely not all in my head as I had heard from several doctors. After almost 40 years of unexplained pain and injuries that just made no sense. I finally had answers. Part of me really wanted to go back to all the dismissive doctors and specialists and tell them what was really going on. I wanted to advise them to spend some time learning about this condition since they so easily disregarded all of my concerns. The overwhelming feelings took over later with the realization that while I did in fact ha...

Day 19 – Wear #REDS4VEDS Friday, May 19, 2023, is global #REDS4VEDS Day! A day dedicated to raising awareness of vascular Ehlers-Danlos syndrome (vEDS) and showing support for people living with this condition. To take part, simply wear red, take a selfie, and post it on social media using the hashtag #REDS4VEDS. What is vEDS? vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax. vEDS can cause symptoms in many different areas of the body, so people with vEDS may require multiple providers in different specialties to manage their care. Key aspects of care focus on monitoring and managing arterial and organ fragility. It is recommended that people with vEDS...

Day 18 – Motivations Motivation is what gets you moving.  Sometimes motivations are urgent/ nessesary like needing to eat or using the washroom. These motivations usually need to be addressed quickly or there will be reprocutions. We dont have much choice when it comes to these motivations. Motivations can be related to almost anything.  I have a husband and a handful of kids to keep me motivated. They help keep me motivated to be the best me that I can be.  I also have fur babies around to keep me motivated because they need to eat, they need clean cages, water and love and snuggles. The joy far outweighs the work. Some motivations can be doing something you love, like going for a walk/or roll. Doing an art project you love. Reading your favorite book or even grabbing your favorite meal. All of these can motivate you to get moving and do what needs to be done. Another big motivation for me is knowing there are zebras out there who are searching fo...

Day 17 – Favorite Ways to Recharge Your Mind Recharging is one of the best ways for Chronic illness warriors to regain some of their strength to continue fighting each and every day. Everyone is different in what recharges them. Just remember that rest is so very important. The Fatigue that we feel on a daily basis is no joke. It’s not your typical tired feeling. It is an all-consuming, week in the knees, heaviness all over that even sleep won't shake.  Things that contribute to fatigue include (but are not limited to) pain, muscle spasms, poor blood flow or blood pooling, and lack of proper nutrition due to gastrointestinal issues, anemia, stress….and so on and so forth. There are far too many things to list but those are some of the biggest contributors. Now how do we fight the fatigue????? Recharging!!!! For me just curling up in my chair with a comfy blanket, my ouchie bun bun, a nice warm tea, and a good show, movie or book can really help m...

Day 16 – Mental Health Today's blog comes straight from the EDS Society. They really said it best so I don’t want to stray from their message today.....  Enjoy!  Not only is May EDS awareness month it is a month that hosts many awareness days and weeks as well. Today is the start of Mental Health Awareness Week. Chronic illness and emotional and mental health concerns can often occur together, and, can have a negative impact on each other. They need equal consideration to avoid either being misunderstood or undertreated — and EDS and HSD are no different. EDS and HDS can force a person to focus on their body. But their emotional and mental health is just as important as their physical health. It is important to understand the connection. The stress of dealing with any chronic illness creates understandable pressures. Having serious physical symptoms remain unexplained or dismissed as “in your head” can trigger a number of emotions and a low mood. It can...

Day 12 – Your Poems/Share A Quote I really do love this quote. It is both factual and ironic. Due to the extensive flexibility most people with EDS have we can quite easily be “bent out of shape.” We are capable of dislocating or partially dislocating any one of the 206 bones in our bodies. Literally bending us out of shape. Something as simple as a hug can cause pain and dislocations in ribs and shoulders.  Now when you flip that to the bent out of shape comment we hear, most of us are so strong you would barely be able to tell anything was wrong. These things happen so frequently that we have had to learn to go with the flow. Things can change in the blink of an eye. We just have to roll with it. If we got upset every time something popped we would have no life at all. We wince and move on. We are true warriors. What is your favorite quote? We would love to hear from you on our  Facebook group.  I see you… I hear you… And I am so glad you are he...

Day 9 – Life Hacks For EDS & HSD  Life hacks are things that make our lives a bit easier. There are so many life hacks out there for all different things but for EDS there are some that are just a cut above the rest. I have a couple that I'd like to share with you today.  _________________________________________________ Let's start with a medical binder. These are helpful to have to keep all your health information in one place. Make a section in the binder for each type of doctor and keep pamphlets for them preferably in their field of study about how EDS affects those areas in case they have never heard of EDS. For example, eye doctors, Dentists, or cardiologists would all have different issues associated with their different fields. You can also put any records or papers from that specialty in the binder so it is organized in case you need it in the future. Another favorite hack I use is to rest before you need to or pacing.  It is no surpr...

Day 8 – Fact or Stat About EDS & HSD  Ehlers-Danlos Syndrome is a tricky little beast to deal with since no two Zebras are alike. Most types of EDS include Joint hypermobility, unstable joints, A high risk of joint dislocations and/or subluxations. Our skin bruises easily, we experience organ prolapse, hernias, and our wounds heal really slowly.  There are other conditions that are co-morbid (or often associated with EDS) Such as Postural Tachycardia Syndrome (POTS) , Mast Cell Activation Syndrome (MCAS) , and  Gastroparesis The cause of EDS is a genetic error that can either be inherited or spontaneous. Each type causes a problem with a different gene. The Gene for hypermobile Ehlers danlos syndrome has not yet been discovered. There is no treatment for EDS, just treatment to try to control the pain and other symptoms associated with EDS. That is why it is so important to get the word out about the different Ehlers-Danlos syndromes...

Day 4 – Shine a Light on a Type of EDS or HSD ⁠The Light it Up Challenge is an annual May event that asks the community to request their local buildings and monuments be lit up for awareness on May 4!  I have requested the CN tower in Toronto be lit up Black and white To help get the word out. If you participated in the light-up challenge let us know in the comments where you requested to be lit so we can check it out! Now let's shine the light on the types of Ehlers-Danlos Syndrome…. As of today, there are 14 known types of EDS you can click to learn more about each type if you like.  Arthrochalasia EDS (aEDS) Brittle Cornea Syndrome (BCS) Cardiac-valvular EDS (cvEDS) Classical EDS (cEDS) Classical-like EDS (clEDS) Dermatosparaxis EDS (dEDS) Hypermobile EDS (hEDS) Hypermobility spectrum disorders (HSD) Kyphoscoliotic EDS (kEDS) Musculocontractural EDS (mcEDS) Myopathic EDS (mEDS) Periodontal EDS (pEDS) Spondylodysplastic EDS (spEDS) Vascula...

Day 3 – Wear it Wednesday – Zebra Strong! F or Wear It Wednesday, wear something zebra striped and share how you are Zebra Strong.  I'm sure one of the first things you see when you look at the EDS awareness ribbon is the Zebra stripes. The Zebra is the symbol for Rare diseases, Not exclusively EDS but most of us EDSers wear our stripes proudly.  No two Zebras are alike and that is how it is with EDS as well. We all wear stripes, but we all wear them differently.  We have different types, Different experiences, and different symptoms. Although very different, We all have one common goal: We all want the time to come when doctors and Nurses recognize immediately the signs of EDS and HSD. Many patients have to wait a decade or more to get answers. I waited over 3 decades myself . That is way too long! We are Zebra Strong! So what does that mean? Being Zebra Strong means dealing with the daily challenges of living with EDS and HSD.  The disl...