Healthier Stay


A Year in the Life of a Borg (Sort of)

My year started with a best friend’s wedding and ended with a best friend’s wedding, but in between…everything has changed. Please allow me to explain. I was still searching for my place in the world when the clock struck 2011 and I anticipated that it would be like any year before it. I was working on my book, at a snail’s pace, and still painfully shy around most people. I was sick and in April ended up in the hospital for the first time in 5 years and I was very worried about pain management.NOW, I have a new GI Doc and a fancy schmancy pain pump, I finally feel like someday I can lead a normal life with some assembly required. For years I let Crohn’s/UC/IBD rule my life, this year I have taken it back.

Why was 2011 so different? I made the decision to try, everything. I got kicked into gear when a friend offered to make my dream come true. He built me a website so that I could find a way to reach other people fighting chronic illness. How could I say no to that? I was terrified but I decided I’d rather crash into internet obscurity than to be a coward. We worked on it for months and I researched blogging. Another friend recommended “What the Jules” on Facebook, 10 days later, Jules is looking for a Crohn’s blogger. You’re probably starting to get the picture, but I said yes to these opportunities and opened myself up to new experiences, but not in a Jim Carrey way. I’ve made so many new friends and connections since July. This is an amazingly awesome community and I can’t believe that I get to share my voice with you all every day. Chronically amazing!

Hey! You know what else I’ve learned!?! Lots of us love all things geek, whether it’s comics, Star Wars, or the Whedonverse. Seriously, who’d have thunk that so many people would relate to Angel fighting Angelus as a metaphor for Crohn’s? I am so glad you do though because you are my people. I thought I was the only one who thinks in Sci-Fi, but I was wrong and happily so. Talking to you has helped me in so many ways; I am more open with my friends and acquaintances. So many people are affected by chronic illness and I’m glad we’re sharing our stories and raising awareness.
This last wedding was inNew Orleans and the last night I was there I ended up hanging out with a guy I’ve known for years. We hung out and had dinner with friends where we talked about my book and the psychology of the Chronically Awesome. After dinner we got lost so we ended up walking around the Quarter for a while. What did we talk about? String Theory and Star Trek, which works since I’m now half Borg in the name of pain management and String Theory fascinates me. The reason this is so important is because I used to be embarrassed to admit that I was different at all. I used to hide my symptoms and problems from other people, especially men.

This has been an uncommon year, thanks to you and all of the Chronically Awesome crew! I hope 2012 will find more innovations for us and that we all feel better by this time next year. Who knows we may all be toasting 2013 with a fresh glass of worm eggs and be cured before the ball drops? Anything can happen and I can’t wait. Until it does I’ve got a lot planned for us, get ready.  Slainte!

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Gratitudenal Haze

Gratitude is a quality similar to electricity: it must be produced and discharged and used up in order to exist at all.  ~William Faulkner

Thanksgiving starts the holiday season. We gather together to give thanks for our bountiful harvest and everything that we have been blessed with this year. I know the holidays can be stressful and sometimes overwhelming, but I am always thankful for every one of my family members at home and far away. I have had a great year so far and I am so very grateful for all of my fantastic readers, followers, FB friends, tweeps, G+’ers, fellow bloggers and for any other type of cyber connection I have to you guys! I can go on and on about my year but I will save it for the Christmas card.

As I sat down to reflect on everything I am so darn thankful for I fell into a type of stupor a type of Gratitudenal Haze, if you will. It’s easy to lose your focus when you are inundated with so many blessings. I was quite overwhelmed at what all has transpired. I launched http://www.healthierstay.com, started writing this blog, met Jules and began working with What The Jules; professionally it’s been a big year. So many wonderful reasons to be thankful and it left me rather dazed. So I have decided to focus on the great medical achievements my brother and I have discovered and undergone this year.

My brother Nicolas also has Crohn’s, he has had one surgery and was resigned to perhaps having to have another one for a 90+% blockage in his colon. He had been so sick he almost died 3 times and had been in the hospital over 12 times in 10 months, it was getting to be a bit ridiculous. As a last ditch effort, one of his doctors suggested an intestinal stent. The stents were first used to help cancer patients whose disease made it impossible to resect their intestines. Since then it has been used with balloon ablation therapy as an alternative to surgery. Since his stent placement my brother has been taken off prednisone and many other medicines and is feeling much better and there is a chance that he could go into remission! For the doctors, my brother, his wife and children along with the stent inventor, I am eternally grateful.

I have also had a medical breakthrough this year. I went bionic. In August I had surgery for an implantable pain pump (IPP) placement. I was taking Morphine Sulfate, Dilaudid andNorcofor my pain every day and the pain was still really bad. I finally ended up in the hospital in April (the first time in five years) and I decided I needed to change my regimen. My pain doctor recommended an IPP; he had used them before for different types of patients and thought it might be a viable option for my Crohn’s pain. I love my pump, it is completely invisible under my skin and I am using 400% less medicine. I will write a post with all the gory details later and share with you the pros and cons. I feel better, no more withdrawal, or waiting for my pills to kick in so I can function. I still have pain, just like I would with pills, but the management of my pain is much better. On pills I was always between a six and a seven, now I’m usually a four or a five, unless I’m having an attack. Plus, as a Sci-Fi geek, being bionic is a bonus. Hmmm Lady Vader, I like the sound of that. Padme was pretty awesome until she wussed out at the end. Anyway, I am so thankful for my doctors, nurses the mad scientists that came up with the IPP and my family for supporting me and helping me stay away from the dark side.

I hope when you are sitting around the table or hanging with family this season that you get a chance to ruminate on some of the circumstances that you are thankful for and don’t get caught in the haze.  Have a wonderful holiday season.

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!


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