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Showing posts with the label Limb-girdle muscular dystrophy

EDS Awareness day 23

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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...

EDS Awareness day 24

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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...