Cindy is back today second post for The Survivor Project. You can read the first post HERE.
Hi everyone–this is my second post of my filofax survival guide project…..
Cushings disease is really in full mode right now making easy and ordinary tasks such as going to the doctor, walking outside etc seeming to be so hard and impossible..I really wish I had a magic wand to make myself well and be able to fully function as I want and need to be. Google Cyclical Cushings disease to see why it is considered the most complex worst illness ever….the symptoms all mirror others..if your doctor is not looking for the zebra (rare disorder) you may get misdiagnosed and it is common with Cushings. I have traveled to UAB in Alabama, MD Anderson in Texas and have seen 3 endocrinologists locally…if not for my Orthopedic doctor I might still be considered a mystery..He looked out of the box and tested out of his specialty and thank goodness, he did.. 🙂 I am still not sure of all of my answers to put me in remission so I am still a work in progress—but we are on the right track and knowing it will take a cyclical cushings expert to finish putting the pieces together. (only 3 doctors in the US are considered the real experts)
My filofax survival guide will be without pictures this blog post as I am waiting on some inserts that I felt would be more helpful to me and anyone that is challenged by a chronic illness. I had to go to two different doctors in the past week-each wanting different medical answers about previous tests, medicines I have taken or have had reactions to, and what test was done where…..also I am planning on traveling to see a Dr. House type endocrinologist in Los Angeles at the end of October and there is so much I have to take with me that I don’t have and can’t remember the dates/locations of each test…
First word of advice…get a copy of everything each doctor orders…one doctor I see is within the hospital system (where most of my tests are done) and he can view every test ordered and completed despite the doctor that ordered it….my family doctor is not in that system so everything I do is also sent to him…it gets rather complicated with my myriad of doctors and conditions.
I have ordered a monthly calendar and some tabs to make each section into a month. My months are filled with seeing a different doctor at least 2 times a month and many tests…last week, I had 5 CT scans and a mammogram in one day!
The old saying–write it down, it will relax your mind is really true for me! My sections are still being tweaked but I have my monthly calendar, my monthly doctors and tests section (which may have to be separated) medications, family and one just for me! In the front of my calendars is my to do section… and it is broken down into urgent, to do soon, and goals/to do but without any time frame…
In my family section, I have dedicated one color for each of my family…blue for my husband, pink for me, yellow for my youngest son and green for my oldest…I will also be using dots to color code or ink to use when I have white paper only to use. I want to be able to see who it is for without having to really think about it…also it is helpful for anyone that has to help me when you are having bad days.
I am also color coding with flags…. red/orange for tasks that need immediate attention, yellow for attention (soon) and green for tasks to be done but not with urgency. I am using this in a different section of my filofax away from the family section so there is no risk of confusion. Also in use will be purple strictly dedicated to my thoughts, wishes, dreams, journaling, plans etc..
I have added a section in my filofax that previously I did not think I would need but going to so many specialists right now, I am being asked repeatedly and it will be nice to have it all in one area…Medicines/Supplements taken and reactions….I guess I am a lucky person when it comes to medicines. I am allergic to so much that my antibiotic allowed list is short as well as my pain medication list. It has been a little strange the past couple of weeks for the doctor to ask me WHAT CAN YOU TAKE? It truly is hit or miss.
Next time, I plan to have the binder set up and pictures to show. Hopefully everything will be working as I plan. Wishing you each a great week..thanks for following and for all of the kind words and messages sent my way.
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