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So I have disappeared for over a week now. That is because it was one of those days last week. Though one of those days quickly turned into one of those weeks if you know what I mean? I have recently got a new diagnosis of a condition called chiari 1 malformation, I wont go into many details but the diagnosis was very overwhelming for me to cope with. Day after day I was sobbing at the thought of possible brain surgery in the future and progression of symptoms that can be life threatening. Just like with Dysautonomia I have met great people who have helped me to understand chiari and how to cope with it day to day. Along with Chiari I recently found out I have hypermobility joints which doctors believe is the cause of my widespread pain. I luckily start physical therapy in a month and am getting a skin biopsy to be tested for Ehlers Danlos Syndrome. I will keep you all updated with my journey. I will do another post soon on common medical conditions linked with Dysautonomia in hopes that some of you all can get quicker answers from your doctors.
As many of us get diagnosed with several conditions each one can be more confusing and overwhelming to get over than the others. It is fair to say we will have our grieving periods and who can blame us for how much we have been through with medical expenses, doctors, unsupportive family & friends all while your dealing with a debilitating illness(s)
Though there is a light at the end of the tunnel, even though it may seem nothing ever gos rite.
Spring is here!! A beautiful time of the year. I have already made goals for myself to be pro-active and to live everyday to the fullest.
I would like to share a few goals I made for myself with you all….
(1) I loved Kyli’s advice so I went out and bought a sketch pad/journal to jot and draw in when I need to vent about my health.
(2) I made a goal on the potsie channel to find a part of yourself you lost from Dysautonomia and to spend one day doing it whether it’s drawing, photography, dancing, or going to the mall. I now inspired myself to bring the artist out in me I lost many years ago. I will post drawings later for you all to see. By the way Laura I loved your reply video…Great Job!!
(3) Since I am unable to go out most of the time, I love sitting down and playing board games with my husband. Call me old fashioned but I love Monopoly, Life, Yahtzee, & Jenga. My husband and I just got operation to play recently to joke about my possible surgery in the future
(4) Picnics are also fun during the spring just find a sunny day. Lay a blanket in the grass sit and have a light meal. Lay back look into the blue sky, make a day out of it and listen to the nature, the breeze and take it all in. I’m planning to do that and a egg hunt for Easter
(5) I love watching cartoons!! The bright colors animated pictures and comedy keeps me smiling & thinking positive. Even if cartoons is not your thing, comedy movies in general is always a way to put a smile on your face.
(6) While the weather is nice, open windows in your house. Let the breeze come in, bake cookies and read a book. The sweet smells and relaxation with a gentle breeze is very stress relieving.
I know allot of this sounds like I have a princess & pony mindset but it helps get me through the days. It is a list of easy, relaxing, fun ideas to enjoy life while sick. Please share any ideas you have that can be added to the list
Hope to hear from you all