Positive living and support for others living with chronic illness. It isn't easy being sick in a world that doesn't understand. You are not alone!
Thursday, October 22, 2015
The title of this blog entry sure doesn't sound very pleasant or appropriate but the word ran through my head when I woke up at four am this morning with burning pain and numbness in my toes. This is a new issue I have been dealing with for the last month or so that continues to escalate. I plan on talking to my Rheumetologist next week about it and hope to get a diagnosis and some relief. I'm pretty sure I know it is neuropathy but I need to hear it from him. I'm dreading the diagnosis because I read that neuropathy is a side effect of the new medication I am taking and the only way to stop the neuropathy is to stop the medication. This is frightening to me because this drug is changing my life. I have only been on it three months and am happy with the symptom relief I am experiencing. I have done more in the past three months than I have done in the past three years. Once again I have to be careful who I tell this stuff to because for some reason when I write or tell people I'm doing better they think that means I am available to them and able to do things like I use to. Wrong! That's not how it works. I still have bad days and many symptoms I deal with so my better looks much different than what the better means to the real world. It took me many years to get to a place where I now know it's about taking care of me first and then my family before I can give to the world. Selfish? No way! Reality? Yes! When I woke up at four am this morning and laid there wide awake with Ella snuggled up next to me I started to focus on my feet. I wasn't thinking about the pain because I have learned when you live in pain you fight it every minute. I focused more on the reality someone who deals with chronic illness has to face, the what next reality. The more I thought about it and came up with no answers one word came to mind. Shitstorm. When I thought about the word I thought of something looking like a tornado running through my body giggling like the devil asking himself what part of her should we attack now? I know lets go for the feet that'll piss her off. Mawahahahaha. I know that sounds insane but it's how it is for us. We try to make sense of somethings that will never make sense and we have to laugh about it by making up crazy scenarios in our heads it's almost like a coping mechanism of sorts. When I got up this morning I decided to look up the word shitstorm. Shitstorm: A vulgar dysphemism for a chaotic and unpleasant situation. Dysphemism? Ok Wikipedia way to big word for me. Of course I had to look up that word since my intelligence is that of a third grader. Dysphemism: Expresstions with connotations that are offensive either about the subject matter or to the audience or both. Dysphemism is sometimes motivated by feelings of such as fear, distaste, hatred, and contempt. Wow that was a mouthful. Pretty spot on. I could spend hours breaking all that down but I'll leave it to your own imagination to figure out. All I know is shitstorms suck. In life there are so many different shitstorms and many of them we create ourselves. We all have those times and those shitstorms are called life. What happens when shitstorms are not caused by you and are beyond our control? That's the part I have a really hard time understanding. The shitstorms that wake me up at four am and keep you guessing as to what will be next. I may never get the answers, you may never get the answers, but we continue the fight. We stay one step ahead of the shitstorm and continue to live our lives the best we can. We love, laugh, give, some days we just breathe, but we never give up! I hope and pray today is a shitstorm free day for you and if not then do the best you can where you are with what you have!