Vacation Downtime

In the past, I was on the go from the moment I left home to go on vacation until the moment I arrived home.Β  After chronic illnesses entered my life, I began scheduling downtime prior to and following my trips.Β  However, this was not enough after my conditions progressed. In the past year, I have realized how important it is to NOT schedule outings or expect my body to be willing to leave my bed for a minimumΒ of aΒ day or twoΒ after arriving at my destination.Β  Whether by train, plane, or automobile, traveling takes a toll on a chronically ill body. After two days of riding in a car, my body is thanking me for not scheduling anything that requires leaving the hotel for the next few days.Β  Typically I would start scheduling outings for the second day, but because I have four fun-filled days planned with family at the end of the week, I knew I needed to take precautions.

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The Super Power I Really Wish For

The super power I really wish for. Admit it; at some point in your life you have wished that you possessed a super power.Β  Some wished for the power of flight, invisibility, the ability to walk through walls, and more.Β  As a child my super power wish was for the power of invisibility. Β The reason for this was that I wanted to be a detective and thought this particular power would help me solve crimes.Β  As an adult living with several chronic conditions, I often joke that my super power is living with chronic pain.Β  However when asked which power I would want, I always replied with the power to fly. The reason I always chose the power to fly had to do with my physical pain.Β  Flying would be a great way to get around when my feet, legs, and spine prevent me from walking.Β  While flying my bones, joints, and muscles would be free from pressure.Β  While still

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Living multiple lives.

Originally this post was going to be called “Living a double life”, but then I realized that I don’t just lead two lives, I live multiple lives.Β  What I mean by this is that my life when going through a flare is totally different than when my Psoriatic Arthritis is in remission and my remission days are nothing like my average pain days.Β  The things that I can or can’t do differ between each one, along with how I react to situations.Β  Many of us that suffer from chronicΒ diseases feel like we are living multipleΒ lives, there is the life people see when we leave our homes and the life no one but those closest to us see when we are unable to leave our beds.Β  It is no wonder that people have such a hard time comprehending what it is like to live with our conditions as they are usually only seeing one of our lives.Β  The three lives that

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The joy of a normal bowel movement

Update is at the end of the post. Warning this post is full of crap!Β  Do not continue reading if talking about diarrhea and poop makes you uncomfortable!Β  With that out of the way, it’s time for some potty talk! I have been living with my chronic illnesses for 16 years.Β  Prior to that I never gave much thought to my bowel movements.Β  There was no reason to.Β  I not only went at the same time every day, but I rarely dealt with diarrhea or constipation.Β  My poop was nothing to get excited or worried about. When my chronic illnesses were first diagnosed, I treated them with pharmaceutical medications.Β  This led to painful bouts of constipation.Β  Later when my abdominal adhesions began pulling and twisting my bowels, my body would flip flop between constipation and diarrhea. After awhile I began to forget what it was like to have a normal bowel movement or even what a normal turd looked like.Β 

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Starting the New Year a little later than I had planned

Happy New Years? What? Everyone is done celebrating the New Year?Β  Unlike everyone who celebrated the New Year on the first of January, I wasn’t physically or mentally up for celebrating it until last weekend.Β  Just before Christmas my psoriatic arthritis started coming out of remission.Β  At the same time a few of my other conditions also decided to flare.Β  Four weeks of being bed bound may drive some people crazy, but sadly it’s something that I have grown accustomed to.Β  Last week I could tell that this spell was nearing an end.Β  It was at this point that leaving the house only for appointments or to grab groceries now and then started to bother me. The reason it didn’t bother me during the worst parts of my flare is because I have little memory of those weeks.Β  As the severity of my flare began to decrease, I found myself finally able to think more clearly and that’s when I

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Spoonies are like snowflakes, each has a different story to tell

Recently a fellow spoonie posed a question online.Β  She asked if she should share the details of her struggle because some people have rudely questioned her disability.Β  They say that she is just fishing for attention.Β  Anyone who suffers from chronic conditions like Fibromyalgia, Psoriatic Arthritis, Lupus, Lymes, MS, Endometriosis, etc… knows that the struggle is real.Β  We also know that most blogs don’t express the whole truth, including mine.Β  I am not suggesting that we are saying we are sick when we are not, because that is not the case.Β  While I do share quite a bit about my struggle, many times I omit the really ugly aspects of my conditions.Β  I don’t necessarily do it purposefully; it’s just that sometimes I don’t want to be reminded of how bad it can be. Living with painful chronic conditions is exhausting, both physically and emotionally.Β  A day doesn’t go by without us experiencing some sort of pain or complication.Β  We

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Heat Wrap Warning

Hey all!Β  In my post Tips for staying warm when the weather outside is not, I suggest using portable heat wraps.Β  I still do suggest this as it is something that I have done and will continue to do, however I have a warning to issue.Β  On Christmas Eve, my spine and neck pain was at an all time high.Β  Knowing that I wanted to attend church later in the evening, I slapped on a heat wrap to help relax my muscles.Β  About an hour before I was to leave for church I felt a strange twinge of pain where I had placed the patch.Β  I felt even more pain when I removed the patch and was shocked by what I saw.Β  The patch had burned me. Thankfully I caught it when I did, because the burns could have been way worse than they already were.Β  This post is to urge you to read the warnings and instructions on ALL

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Reasons to give Thanks

This Thanksgiving I am reminded of all that I have to be thankful for.Β  My dear friend Pam has reached her final days and for all I know today may be the last time I see her on earth.Β  I will be away for two days this week to celebrate Thanksgiving with my family at Disneyland.Β  This trip had been planned and reservations were made long before Pam entered her final weeks.Β  My first instinct after seeing her yesterday and hearing the nurse’s report was to cancel my trip, because it’s not like I can’t go to Disneyland any time that I want.Β  However, I am not canceling this trip asΒ  Pam would not want me to cancel.Β  So this trip will be in honor of Pam.Β  The past two months Pam’s situation has reminded of all that I have to be thankful for.Β  With that said, here is my list of things that I am giving thanks for this

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Recognizing when to speak and when to be silent.

Those of you that follow me know that I have been spending most of my energy and time with my dear friend that is nearing the end of her battle with cancer.Β  Read Beating the Odds to learn more about Pam, my miracle friend.Β  Since my last post, my friend has suffered a seizure that has increased her memory loss and made it even harder for her to communicate her needs. I am no stranger to death, as I have been with several people as they entered their final days, but never to this extent. Β As someone who suffers from several chronic conditions (MS, Psoriatic Arthritis, Degenerative Disc Disease, and Fibromyalgia), I find myself in a unique position of understanding and having empathy for much of my friend’s physical pain, emotional turmoil, and mental misfires.Β  I know what it is like to be consumed with physical pain.Β  I know the emotional struggle of allowing people to care for me and

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