In my case rare does not mean all the previously stated positive things, instead, it means infrequent, unusual, uncommon, out of the ordinary. Combined with incurable which for me means chronic, persistent, longstanding, constantly reoccurring, long-term, they are two words that definitely annoy me. Those two words spilled right out of my physicians mouth back in October of last year and they were confirmed by a specialist in January of this year. I knew something was very very wrong about this time last spring and little incidents over the past year did not all click into place until a simple requirement by our insurance company to have a physical revealed some questionable lab results.
I have been tossed more two word combinations throughout this discovery, unknown factors, early stages, outcome unpredictable, secondary conditions (yes with and s meaning more than one) side effects, and the only semi-positive ones being, manageable and treatable (if the medication is tolerated and there is a huge trade off here that could harm my eyesight). I am still trying to process this news months later after being diagnosed with a rare and incurable auto immune disease. Along with this I have four secondary conditions that are caused by the main condition. While the cause of this disease is unknown, thankfully it is not contagious, genetic, or hereditary.
I have learned that Google likes to over scare and Google is not the boss of me so I have refrained from any more advice from that source. I now rely (somewhat) on my specialist and the good common sense that God gave me to make choices and decisions. I did not buy a ticket for this particular train ride but I am on it none the less so I am trying to enjoy the scenery on the good days and relax and rest on the bad ones.
The worst of this is the not knowing. I have no idea which form I have, there is a lesser form with limited symptoms and systems involved and a broader form with more symptoms and systems involved. I have no idea how bad it can get and I am not good at the unknown. It is already affecting my hands and honestly that terrifies me...to not be able to paint or draw or click a camera...to not be able to do the simplest of tasks. I am already experiencing difficulty with dexterity and sensitivity in my hands, I tire more easily, and my immune system is shot causing me to have an over reaction to the most common simple ills. I won’t lie, there were a few dark days of feeling overwhelmed and depressed. I did have myself big ol’ two week long pity party a while back then I slapped myself upside the head, put back on my Pollyanna attitude, my big girl pants, and a pink tutu, (totally needing a triple threat) and am now back on track!
Like any change in life, it will take time to get used to. There is a huge difference between being a victim suffering from an illness and being a person living with a disease. I refuse to be passive or helpless or defined by it. This is a hard goal to achieve, especially on the days when I feel really bad or really want to do something and am just physically unable to. It's hard when people tell you, "Well you look just fine to me." when they can't peer into my body systems that have gone awry or be in my skin to feel the effects. I am looking hard for the lessons God wants me to learn in this change of the unpredictable and uncertain nature of this disease and its effect on my daily life.
Annie posed another question a few days later asking what word or words you liked hearing or using. I guess at this point I am whispering two words that make a compound word to myself...overcome...succeeding in dealing with or gaining control of a problem or difficulty. I am not there yet but I am working my way towards that goal.
All this said to say if I am absent from social media, if I am not making and showing art or nature photography, making videos, or sharing my words it is because for right now my focus is on getting a balance in my health and emotional well being.
Blessings,
Sandy
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