The cracked Zebra

  Day 29 – What To Say To Someone With Chronic Illness We all may have a list of things  not  to say to someone with a chronic illness, but what about things you  should  say?  I'm gonna stop by for a visit. this is one of my favorite things to hear from a friend. I love it when one or two people come to visit me in my home. Home is my happy place. It is where all my stuff is. All the stuff that keeps me healthy and comfortable. I know the seating will be comfortable, I know the food won't make me sick and I know if something did happen I would have whatever I need available when I need it. This reduces all the stress I have from going out. I don't even have to brace up if I don't want to. I can just sit back and relax with a good friend. Now that's the life! _________________________________________________ How can I help you?   This is another phrase I like to hear. I DO NOT like to ask for help. Asking for help was always a sign of weakness growing ...

  Day 28 – 3 Things You’re Grateful For A day of gratitude! Talk about 3 things you’re grateful for. I am a very blessed person. I have so many things in my life that I am thankful for. Is at the absolute top of my list! I have a fantastic husband who works hard at everything he does. He always wants to be the best at everything from being a good husband to a great father, and provider for our family. He even does the little things like emptying the dishwasher and making sure the hot tub is clean and healthy for my therapy. He really is a gem. Then there are my 7 beautiful children. From oldest to youngest there are so many blessings mixed in. Each child is growing each day to be the best human they can be. They are all Kind and thoughtful individuals who truly make this world a better place and I am so very thankful God entrusted them to me for the time he did. Although most of them are off-adulting in the most fantastic ways they will forever be my babies. That probably sums me u...

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 23 – How Could Health Professionals Help More? From my experience, there are 2 types of Doctors or specialists.   The first kind is patient and caring. They really take the time to hear what you have to say. They often repeat things back or ask follow-up questions as you tell them your medical story. These doctors want to get to the bottom of what is going on. They make referrals and do tests to try to get answers. These doctors are the heroes of the medical field. They are rare to find but they are out there. The other type of doctors I have encountered on a far too often basis listen for a minute or two, offer a couple of prescription ideas, and off they go. It often happens so fast that you get whiplash from the encounter. You may even wonder if that actually took place or maybe you just sneezed and missed it. You definitely don't feel great after appointments like this and often leave with more questions than you have answers. These doctors need to take notes fr...

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 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 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...