The cracked Zebra

Day 21 – Make a Promise to Yourself A couple years ago I asked my friend if she wanted to go for tea. She replied that she couldnt because she had to paint her nails. A bit taken aback, I reminded her that she could paint her nails anytime reiterating to her that we should definately go out! Yet again she told me no and stuck by her original plans, so I said ok maybe another time. I really didnt understand why painting her nails was so important to her. I tried to let it go but I just couldnt, something just kept nagging at me to ask her what the big deal was. If your anything like me you will understand the overthinking that ensues when your thrown for a loop. I could just not shake why she would refuse a tea date. Did I say something or do something that upset her? Had I been a bad friend? Honestly t was driving me absolutely nuts! I had to know! I just couldnt take it anymore. No matter how hard whatever I had done was going to be hard to hear, I had to go to...

Day 20 – Share A Smile! There is one thing in this world that can make a big difference in someone's life and not cost you a penny. It can give someone hope when they are feeling hopeless. It can fill them with joy when their day was a bit rocky. I have even heard of people who chose not to commit suicide all because of one person's simple act…a smile. I am a smiley person. Anyone who knows me can attest to this. Even on some of the roughest days if I have to go out, I plaster on my smile and do what I gotta do. Fake it til you make it baby! I'm sure many of you out there reading this feel the same way and do the same thing.  Sometimes people try to accuse us of faking our illness. Unfortunately, they are half right. We are fakers, probably some of the best Lakers in the world… We spend a large portion of our time faking...faking being ok. Faking the amount of pain we are in. Faking how much we can safely accomplish before we start to hav...

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 15 – Childhood & Teenage Years My childhood and teenage years were a struggle. I have heard from many other Zebras that their experience was similar. I had lots of body pain, Stomach issues, headaches, and injuries. Doctors kept saying it was not possible that I had body aches and pains at my age. So they said I had growing pains or that I was seeking attention. They tried to convince me that it was totally normal. Something all kids went through. As the years went on and my story stayed the same I was sent to counselors to try to get to the root of my mental anguish to try to help with my “perceived” pain. I was told for many years my pain was “not real” and I “needed to forget about it.” The Neurologist said “Kids don't get migraines” so they called it a seizure disorder even though I never had a seizure. I found out many years later that I suffer from migraines and cluster headaches, No seizure disorder here. I would get migraines seve...