The cracked Zebra

  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 u...

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 smi...

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...