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Wednesday, December 24, 2014

Merry Christmas!!

To your family from ours, have a wonderful Merry Christmas!!!
Also, a special thank you to all my readers and followers. Writing this blog has helped me in so many ways. I have met some awesome people though my blog and it has really made a difference in my life. 
Thank you! Thank you! Thank you!
Merry Christmas!!
Jenn, Sam, Sis and Jake!

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Monday, December 22, 2014

Please rate your pain today? Ok, what area?

The pain scale. Technically known as the "Wong-Baker Faces Pain Rating Scale" is the most absurd scale for those of us with Chronic pain, Fibro, Lupus, MS etc...etc... Because we just don't have one area of pain. It is wide spread pain that changes hourly and sometimes by the minute. That may sound like I am exaggerating to some but us chronic pain sufferers know how true that statement is. When you go to an appointment, the nurse asks you as soon as she gets in the door about rating your pain but never asks for different areas.
Let's look closer shall we?
Nurse: "So, on a scale from 0-10, what is your pain today Jenn?"
Me: "7"
Nurse: "Is that your neck?"
Me: "No, my neck is a 3. My lower back is a 7.
Nurse: "Okay."
Me: "My fingers are a 2. My knees are aching around a 4. So you better grab an umbrella because it IS going to rain later. Upper back is a 3. My left elbow is a 7ish when I lift items but right now a dull 1. But it does give me an urge of wanting to rip it off because it aches constantly. My feet are maybe a 1 but a 10 when I first get out of bed in the morning.".
By this time the nurse has lost interest and you get the eye roll. BUT IT IS ENTIRELY TRUE!! Our pain is never in just one area of our body. It is everywhere, rated all up and down their precious pain scale. Do I sound a little bitter? That's because I am. It is bad enough being in pain every single minute of every single day, you feel like you have to prove it to the physicians, nurses, clinicians, family, friends, loved ones and that you are NOT crazy nor making it up just to get narcotics. You just want pain relief. The precious, absurd pain scale doesn't really even give a clear picture because I think we have been in pain for so long that we are used to it. Meaning, my dull aching left elbow as a "1" could possibly be a healthy person's "7". Or my husband's "15". Love you babe!
I just wish there was just a more accurate way to explain your pain. I wish the pain scale was not just for one site. I suppose this is where we have to advocate for ourselves, ignore the annoyance eye roll and put it all out there without being judged that we are crazy or just wanting narcotics. We just want to feel better!!!



Just a little side note... My hubby pulled his hamstring the other day. It is painful. I know that it is but I did say to him "Now, imagine that pain everyday. That is what I go through. That is why I get bitchy".

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Thursday, December 18, 2014

Holiday gatherings and chronic illness

Ever since I was a little girl, Christmas was my favorite. Not so much because of the presents but I loved the food, family and the love that was shared.  I would wake up and look out the window to see if we were going to have a white Christmas. (Ok, I'm a 30 *cough cough* something year old woman and that is still the first thing I do Christmas morning.) Ever since this stupid chronic illness has become more pronounced, I am having more and more trouble with gatherings. The noise. The people. The conversations. Oh and let us not forget about the look of "Well, you don't look sick!" and the lovely comments that we have all endured. That is just the tip of the iceberg. Hoping like hell I am going to have a good day. Because I never know what kind of day I am going to have until I wake up. Is it intolerable pain or minimal pain? Little fatigue or kick my ass, where's my bed fatigue? And the planning of the day is taxing its self. So, if the gathering is at 1 pm then I have to be in the shower by 11 am so I will have enough time to rest before we hit the road. Fingers crossed that I am having a good day and not a flair.

Having a chronic illness, you have to give up so many things in your life and Christmas is not as enjoyable as it once was. I know, I know, life it what you make it but having a chronic illness sometimes sucks all the Christmas spirit right out of you.
And of course I have to put on the fake smile! If you have chronic pain/fatigue, Fibro, Lupus or whatever, you know what I am talking about. When asked "How are you feeling?" you put on that fake smile and reply "I'm doing ok" because you don't want to go into detail but you really want to say like... "The TV is blaring, little heathen children running around screaming, 20 people talking at once is really crawling under my skin and making my pain shoot up to an 8!" Why not say this? Well 1. It would be rude and they would think you were crazy and 2. A person who does not have chronic pain, Fibro, Lupus, Chronic Fatigue or whatever will never truly understand what I am talking about anyway so why waste my breath. Hence the fake smile!
Don't get me wrong, I do love Christmas. It is a wonderful celebration of Christ, family and love. But having a chronic illness just takes away from that. So, I decided to pace myself. Enjoy as much as I can. Do what I can. Rest when I need to and say "No" if necessary. Extra Buspar wouldn't hurt either!
Merry Christmas!!

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