Healthier Stay


I Recharge in…The Twilight Zone

Posted in Newer Posts,PFAM by Healthier Stay on May 17, 2013
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Rod Serling helps me to get back on my feet, by way of, The Twilight Zone.

Rod Serling helps me to get back on my feet, by way of, The Twilight Zone.

Submitted for your approval, as a part of the Patient For A Moment May 2013 Blog Carnival.

The Topic this month is, “How do you recharge when you need a break due to illness?”

This may seem nutty or out of this world but when I am exhausted, flaring or just completely fogged out I can’t concentrate.  One of my favorite ways to escape is reading, the only problem is that I straight up can’t concentrate from one word to the next.  As a chronically awesome person I battle my own attention span in so many ways due to: fatigue, pain, pain medicine, steroid therapy, brain fog, constant doctors appointments, bills…and…what was I talking about again? Yeah, that happens all of the time. Seriously I’ve found myself watching hours of How It’s Made episodes and not knowing what I’ve seen. Luckily the trivia vault in my brain functions on autopilot and I remember random facts days later whenever I need to school my friends, but I digress.

I used to love to watch YouTube videos on my computer but that can get out of hand and is rather unfulfilling. One day I was flipping through NetFlix and stumbled upon classic American television, The Twilight Zone! The Twilight Zone is perfect for my recuperation days because it’s an anthology series, there are over 100 episodes and it is always unpredictable. One episode shows a man betting his soul, another can tug your heatstrings as children pick out their new “electric grandmother” and still another teaches me to live my life as it happens rather than following superstition.

Rod Serling was a genius. Not only because he wrote over 75% of the episodes but because he created a series of shows that can be watched back to back with little to no boredom. I am constantly intrigued by the way he can spin a compelling story in 22 minutes, just long enough before my mind starts a-wandering. It’s like he knows me.

This may seem like a silly post but I researched it this week. I just had several major dental procedures done and I spent an inordinate amount of time on my couch. Whenever I came back to consciousness I flipped on my pal Rod. He always has a story for me and I even found myself thankful for the life I have, rather than living in that strange dimension where store mannequins have memories and Robert Redford guides old ladies to the hereafter, that place they call, The Twilight Zone.

Once I have traversed all of the twilight dimensions I may have to see what Alfred Hitchcock Presents.

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From Donna Downer to Donna Kay

Posted in Archive Blogs by Healthier Stay on February 27, 2012
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I’ve had an attitude adjustment in the last few years. When I was younger and learning to cope with my Crohn’s disease, I only saw some of my friends 3 times a year. I would go to my friend’s birthday party in June, her annual Halloween party and another friend’s Christmas party. Someone would always ask me how things were going. My usual reply was: My dad’s really sick and in the hospital for…, my brother is really sick and I’m sick, exhausted and in pain. I would expound on all of the symptoms, problems and weird complications that Crohn’s had “gifted” on our family and generally suck all of the happiness out of the room. Merry freaking Christmas! I didn’t realize how depressing my stories were and I didn’t think it was a problem because people kept asking and acting genuinely interested. They are very good friends because I was definitely, Donna Downer. All I focused on were the bad things in my life and none of the good.

 

One day, as I was reciting my problems to my friend, I realized I sounded like a broken record and I told him about the Sunday school class I was teaching. You would not believe his reaction! He had the biggest grin on his face and said, “Oh Donna, I am so glad you have something positive to hold onto in your life!”. I was shocked! I had plenty of great things in my life, but they weren’t the “Headlines” of my conversations. I needed to re-evaluate the way I approached my life, my illness and my family’s problems. Yes, we had a bunch of woes, but we had even more positives. My family dealt with every problem by banding together, we were and are one of the closest families I’ve ever known. We had a wonderful church that was there for support, care and strength on a 24/7 basis. I also had other friends who would pick me up and take me to do things several times a month, just to spend time with me and help me stay sane. All of these great blessings and all I could talk about were my dad’s Toxic Mega-Colon, or my fainting spells {they lasted 2 years and no one knows what caused them}. Yes, my family could give Ripley an entire season of Believe it or Not episodes, but we also could have had a bunch of “very special” Growing Pains too. I just needed to learn how to change my attitude and the synopses of my life. That is so hard, but I’ve learned that Fake it, till you make it is very true and helpful. Sometimes I even keep things too close to the vest these days, but I am a work in progress.

 

I’m still learning when to share the good, the bad and the fugly. A large social gathering is not the place to talk about bowel resections and diarrhea, but I can share how well my treatment is going with Entocort, a “mild” steroid (Ha ha ha). I can talk to my friends in private, sometimes they have to pry it out because, like I said, “work in progress”. Of course I can talk to my family and we work hard to keep each other in good spirits and to lift each other up, no matter what we are going through.

 

One person that I can share everything with is my pain therapist and I see him every week. His job is to listen to me about my problems, my pain and my life, and help me figure the best way to deal with them. I have gone through literally every single emotion I’ve ever known in his office. Being able to talk to someone who has to listen to me, but not pander to me, is truly refreshing. I started therapy to help get through losing my dad. He died from Crohn’s complications and, in less than a week, Crohn’s went from the horrible annoyance that caused us pain, to the terrifying menace that killed my father. I bottled my feelings and tried to stay strong for my family. I kept it up as long as I could and after 3 years I just started to feel brittle and my pain started overwhelming me. I brought this up to my pain doc and he suggested I try the therapy. Just knowing I have a safe place to talk is a huge comfort to me. We worked extensively on my grief and he was one of the first to encourage me to write my book and, by extension, this blog. Along with the head shrinking, he and I also work with relaxation therapy and have had some astounding results.

 

Now that I have these outlets, I don’t feel like I have to regurgitate horrible news to someone I haven’t seen in a while. I can keep my life in perspective and my attitude has improved exponentially. I have more chances to see my friends and, hopefully, they don’t fear seeing me anymore. I want to be social and I love that all of these problems are no longer living rent free in my head. I had to fake this attitude for 2 years and now I naturally lean toward the positive. I’ve gone from Donna Downer the chronically ill girl, to Donna Kay the Chronically Awesome woman and I couldn’t be happier!

Reflections On Shark Week

It’s Shark Week! The one week a year where the cable universe is devoted to the most majestic of underwater predators, the shark. I am a marine biology freak. My dream job has always been, Marine Mammologist, and I love snorkeling and SCUBA diving. Shark week is always a big thrill for me. It’s also a week of reflection. When I think of sharks I think of grace, agility, power, strength and pain. Sharks make me think of pain dreams.

Since I live with Crohn’s, Ulcerative Colitis (UC) and Chronic Functional Abdominal Pain (CFAP), pain is a part of my life every day. Chronic pain comes in many forms, mine include; cramping, burning, stabbing, searing, throbbing and pressure. I’ve learned to deal with most of it through medication, breathing and guided relaxation but there are times when I’ve had absolutely no power over my body. Pain medicine is not designed to take all of your pain away. It’s designed to take the edge off and restore some functionality. The best case scenario, in most cases, is a 50% pain reduction but that can take years and pain is never static. Breathing and relaxation are great to help when you are conscious, but what happens when you are asleep or if the pain knocks you out? I’ll tell you…pain dreams. When I am flaring I get nightmares so intense I actually feel like my body is being attacked. Sometimes I dream of lions but mostly it’s a great white shark literally tearing me to pieces. My pain gets so intense that my brain equates it with an external attack. I dream I’m getting eaten by an apex predator with a giant toothy grin. When this happens I can’t wake up, I start screaming and fighting for my life. Woe to anyone who tries to wake me up because I am apt to punch or kick them and I don’t even know they are there. I just keep trying to get away from the pain.

These horrible dreams were very common when I was first diagnosed, occurring anywhere from a couple a night to several a week. That was a truly frightening time for me, I couldn’t control my body and I was hurting the people I loved. I was most worried about my dad. He was onTPN(nutrition and medicine pumped through an IV) with his IV catheter attached to his heart. If he tried to help me while I was flailing I could have killed him. I was afraid to go to sleep and terrified of what I was going to wake up to. These dreams kept up for about 3 years, through sleeping pills, anticonvulsants, antidepressants, painful muscle blocks and sleep studies.

I finally found a doctor who listened to me; he changed my pain medicine and recommended a pain therapist. Finally, my dreams started to recede as I started a new regimen of opioids and relaxation therapy. I’ve been having a bad flare since January and I’ve only had one pain dream. I think my body has been trained to breathe and relax even when I’m unconscious. My pain keeps growing, but my body’s responses are better and I’m exploring better pain management, including a pain pump. The pump will deliver medicine through my opioid receptors and I won’t be held hostage to my faulty GI tract for pain relief anymore.

As I watch Shark Week this year, I can reflect on how far I’ve come. I enjoy the shows for what they are and celebrate an amazing, misunderstood animal that should be respected. As I watch, I think of my body the same way. Maybe with training, awareness and research we can win the battles against our bodies and save the sharks!

We Fight Crohn’s Every Day

I’ve been living with chronic illness for the past fifteen years, but it has affected me all of my life, my father had it and brother was diagnosed when he was eleven. I struggle daily to live a life that is defined by me, Donna Kay, and not by Crohn’s disease. The best way for me to explain my life with Crohn’s, Ulcerative Colitis (UC) and Chronic Functional Abdominal Pain (CFAP) is through analogy, this is how I’ve always pictured it in my head. My symptoms started getting very unruly and I was diagnosed my freshman year of college, coincidentally a TV show debuted that I absolutely loved—Buffy the Vampire Slayer. One of the main characters is Angel a vampire cursed with a soul. Angel started his afterlife as Angelus, a vampire, whose only concern was which human he would attack next. After killing the wrong Gypsy Princess, he is cursed with a soul and has to live with the guilt of killing all those people.

Stay with me here, I don’t think people with Crohn’s, or other chronic illnesses, are demon spawn. Angel is unique, he has to struggle with an entity that wants to rule his life and a soul that keeps him connected to the real world. Once he has a soul he becomes a person fighting his own body. I think of Crohn’s as the vampire side: sapping his strength, attacking his body, placing him on a specific diet i.e., the blood bank, inhibiting his dating life, limiting mobility, sometimes causing depression (Angel can be a broody son of a gun.), constantly in a state of thirst (pain) that can never really be slaked. Oh, and all of these are enhanced as his stress increases. That seems like a horrible existence- it’s supposed to be it’s a curse for his prior transgressions- but Angel learns to master his own life and body. He learns to coexist with this permanent hitchhiker and even find a use for some of his afflictions. This may be an odd comparison but it shows what Crohn’s can do when left unchecked and what we can do as we learn to accept it as a part of life, but not as the ruler of it.

Crohn’s is an autoimmune disease that affects the digestive system, from the mouth all the way through, it causes inflammation, ulcerations, blockages, fistulae and cobblestoning {numerous ulcers mixed in with healthy tissue to give the effect of a cobblestone street}. So basically, a Crohn’s patient is attacked by their own body and the area that is hit worst is the body’s supply depot. Our bodies can’t pull all of the necessary nutrition from food because something in there is constantly maneuvering against it. We learn quickly what food we can eat, and what food will cause immense pain. The most common symptoms for Crohn’s disease are; nausea, vomiting, cramping, constant pain, irregular bowel habits, acid reflux, bleeding and anemia. That’s a lot to deal with every day. It can feel like your whole body is working against you but you still need to carry on with your day.

In Sunnydale, vampires act like, um, vampires. They can drink all the blood that they want and generally enjoy wreaking havoc. The vampires have no humanity or compassion; those qualities died and were replaced with a demon that controls their bodies. This world is shared with humans, who fight every night for their right to life, a chance to graduate from high school, follow their dreams and kick some vampire ass. Angel has a huge challenge. He has to fight his own body so that he can try to lead a fulfilling life. He still has the cravings of a vampire, but he has a soul now and so he has emotions and nerves. He sometimes turns into Angelus, but never for very long. Angel gets nervous now and worried and upset and happy and loving, he’s almost hormonal!

With Crohn’s that is always a big challenge, worrying if the conditions will be conducive to your body: Is there a private bathroom? Will I be able to eat at the dinner party, i.e.: will I be too nauseas, is there anything that I can eat? Do I have my medicine ready? What do I have to do to plan for this activity? If I can’t go will I still have friends? Since we can not always be spontaneous, we need to plan ahead just in case something comes up quickly. I know that doesn’t make a lot of sense, but with a chronic illness, the more you prepare for anything, the more you are able to do. I have all of my medicine in one bag at home and I try to have at least 8 hours of medicine, hopefully 24 hours, on me at all times. I take 28 pills a day, so they don’t really fit in a seven day pill box, it’s just too small. I have had to train myself to get my meds together before I leave, every time, so that I can face the day and all of its surprises. Scoping the area for available restrooms, even asking staff if there is a family or private restroom, releases some stress because you know where you need to go, when you need to go, in a hurry. Making sure to eat ahead of time is another big recommendation. Before arriving at my friend’s wedding, I ate dinner at home. She was providing food at the reception, but I can’t eat fresh fruit or vegetables, or anything with seeds or nuts, that makes it hard to eat at a summer wedding. I also try to drive myself, then if I have to leave I won’t infringe on anyone else’s fun. This way of life can be difficult but it has enabled me to enjoy more of the same things as healthy people.

Angel eventually learns to help his friends and becomes a knowledgeable resource; they turn to him nearly every week. Eventually, he learns to help people he’s never met and shows them that they can live with a dark side too. On the show, Angel, Angel helps Faith, a rogue vampire slayer. She learns to fight off her darkness and feel human again. One particular trait that I admire in the Crohnie/ HYPERLINK “http://www.butyoudontlooksick.com”Spoonie/  HYPERLINK “http://www.whatthejules.com” Chronically Awesome community is that we try to help our newbies. We can share our stories and our knowledge with a new patient, family member or a friend. We share on social media, we share on our websites, we talk and we walk in the  HYPERLINK “http://www.ccfa.org” Crohn’s and Colitis Foundation’s Take Steps Be Heard walks. We want a cure but, until we get that we want to live as normal a life as possible and share our successes.

I remember my first pain attack; I

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