The cracked Zebra

  Day 31 – How Can Others Raise Awareness Today is the last day of Ehlers Danlos awareness month.   WE MADE IT!!! I must admit I am quite proud. Today will be my last daily post for a bit. I will still be blogging just not daily. Daily is a lot! Especially while dealing with chronic illness. This was the promise I made to myself that I would not break. I wanted to write a blog every day of EDS awareness month and I did it! I really hope someone was able to learn something.  For the last day I want to focus on other ways to spread awareness.  The other one I worked hard on was contacting the CN Tower in Toronto. They lit the tower up in black and white on May 21st. I was so happy to see the muted colors of the cn tower. It wasnt flashy, but neither is EDS. It lurks in the shadows and hides, causing problems until it eventually gets found. It took me over 40 years to understand what was going on in my body and I am so glad I did. I want to help others find the answers they need by spread

  Day 30 – Accommodations That Would Help Me The Ehlers Danlos society shared with us the following about Accomidations. It was so good I wanted to share it as is to you all... Enjoy! An accommodation is a change that removes a barrier and helps you to work around your condition or disability. Accommodations provide equal access to people with disabilities and simply offer support to account for challenges. Examples of accommodations include giving keyboards to students who struggle with handwriting, flexible work hours, and ergonomic or adaptive office equipment. What could help you to manage better at home, school, university, or in your workplace? What accommodations could teachers, employers, and others make to enable you to thrive in certain environments or situations? Family and friends can also be accommodating to our health concerns, such as understanding when plans need to be canceled due to health issues, or adapting plans to ensure the environment is suitable for our current

  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 up so it is no

  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 up. M

  Day 27 – Gift Ideas For People With Chronic Illness There are so many gift ideas it is really hard to just pick a few to take a closer look at a few considerations first. Be mindful of allergies – especially for those with MCAS. People may be allergic to certain types of foods, ingredients, lotions or perfumes, fabrics, smells, and really the list just keeps going. Consider offering services - Certain tasks that are very easy for you may be quite taxing for someone with a chronic illness. Emptying the dishwasher may take you 5 min where it takes them 10 plus a couple hours to recover from the bending, twisting, and reaching involved. If in doubt about the suitability of gifts , vouchers can be a good option as the recipient can buy something that works for them. Consider joining together with friends  to save for larger/more expensive items that the recipient would never otherwise be able to buy themselves. One of my favorite gifts was the Heated blanket my husband picked up for me.

Day 26 – Feel Good Friday!  What Do You Love Doing?  There are a lot of things I love to do. I think Laughing is one of my favorite things. If something can get me full on belly laughing that's the best. Whether it's a movie, a show, a comedian, or just one of the kids being silly. Laughing is my favorite thing.  I enjoy movies a lot too. What other good reason do you have to sit and veg out in a chair for 2+ hours at a time? I wonder if I could get paid to review movies. That sounds fun!  In an earlier post, I mentioned diamond art. I really enjoy the simplicity and the repetitive motion of diamond art. It's almost meditative for me. I just find it so calming and relaxing….right up until my OCD side does NOT want to stop until all of a certain color is done in the section I am working on. Join us on our  Facebook Group and Let’s start a wave of positivity! What do you love doing? What are your passions, hobbies, or simple things in life that just make you smile?  I see y

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 thin

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