Healthier Stay


Here’s The Thing…Lupus the Great Imitator

**Since this post was written (March 2012) there have been some changes to the podcast roster and time. Jules and I now host Chronic (Illness) Chronicles on Saturday Mornings at 8am PST/ 11am EST. We start 2013 with a new episode on Saturday January 5 and I hope you will join us!**

Merry Holidays and Happy New Year! ~dk

For this week’s Chronic Chronicles podcast, Jules, Gini and I decided to write posts about each other and our illness. We are trying to envision life with their chronic qualifier {i.e., disease}. I am writing about Jules and Lupus and we will be discussing all of this as our main topic on Friday at *12N PST/ 3pm EST*. 

I haven’t known Jules for very long, we first connected when I responded to her “ad” for a Crohn’s writer for What The Jules. We corresponded mainly by email and I was a little intimidated, ok very intimidated. She had a great site, many followers and a style of patient advocacy that I hadn’t seen before; snarky, adult and a confident “get on with it or get over it” attitude that is so refreshing to see in the chronically awesome world. Basically, she won’t take a lot of crap and she’s kind of a badass. I wanted to be like that and to grow my blog and website,  all the while staying true to myself. She is a leader in our community and I respected her, so I wanted her to like my writing. I asked her what she wanted me to write about and she gave me free reign to choose my own topics, as long I didn’t use the words, “irregardless and anyways”. Um… not a problem!

Now I’ve gotten to know her better, she and I talk everyday and I’ve gotten to know her and what she is fighting/living with everyday. She battles for and against her body every day. She reminds me of R.J. MacReady from John Carpenter’s The Thing , MacReady {Kurt Russell} has a natural leadership ability and is friends with everyone on the crew of  an Antartica science station. He wears a sombrero to work and he has great hair, if he shaved his beard I probably couldn’t tell him apart from Jules. He also fights an alien that has the special ability to kill an organism and camouflage itself as the organism, this is how it breeds. MacReady is in a life and death battle with an external enemy that mimics it’s prey. Jules is locked in an internal battle with Lupus, an autoimmune disease that is also known as “The Great Imitator” because it can resemble so many other diseases. It’s not just that they fight a similar foe it’s how they fight that matters to me.

Jules is one tough cookie. She works on her website all the time, she keeps up with so many people on social media and she doesn’t pitch a bitch about her pain or her suffering. She uses them to convey what we as Chronically Awesome people can do. I’ve talked to her when she was in ridiculous pain because the Lupus has jacked up her kidneys so bad. I’ve seen her patch up her feet because the nerves in her extremities were causing so much pain. I’ve texted her at Disney Land where she was standing in line, with her cane, ready to ride the rides even though she was having a bad day. I only know about these occurances because I’ve witnessed them in some way or other: I know about the kidneys because she sounded like she was in pain, her feet because she was nonchalantly patching them up on a hangout while I happened to be paying attention and Disney because I was actively chatting with her and asked how she was doing. She doesn’t complain, she clears a path to her life and does her best to avoid the clutter that is chronic illness. She puts on a brave face and fights a disease that can be mistaken as Chronic Nephritis, Diabetic Neuropathy and Rheumatoid Arthritis, but is actually Lupus trying to take over her body. Lupus is so complicated that Dr. House can’t even nail a diagnosis. She puts on a brave face and soldiers on, just look at her FB, Twitter, G+ profiles and website to see how many people she inspires. MacReady fights the big fight and won’t take whining from anyone, he does what needs to be done, no matter how scary the task. You can see in the movie that he is terrified, his eyes are wild at times, but he always does what’s he can to save his colleagues and humanity.

Jules and MacReady are a lot alike (she faces Lupus and kicks its ass, he fights the Thing for days and kicks it’s ass), but they have one key difference. MacReady fights and wins and waits to die. Jules fights and wins and wakes up to fight another day, every single day and she does it with a positive attitude and usually while wearing fantastic shoes. She fights constant fatigue and fevers and headaches, oh my. Yet she’s still there to maintain and build a website, a blog, a podcast, a marriage, a relationship with her daughter, her friendships AND start her new business! Most people can’t do all that healthy and she does it every day! There is a dirty question that we Chronically Awesome people are asked a lot, “How do you keep going?” or “How do you get through it?”, the answer is usually, “I just do, like with anything else.”‘. Jules does “it” with panache and gusto, two words that aren’t normally associated with Lupus.

I’m very lucky to have Jules as one of my very best friends and I feel like I’ve known her forever even though it has only been a few short months. We inspire and support each other and as much as we chit chat back and forth, more than 2,000 miles apart, we rarely talk about our illnesses except when we are working on podcast prep. We try to keep to a no whine zone in real life and expect it of each other. Jules would beat The Thing and be ready for the next challenge, while MacReady was still trying to work the flame thrower. I’d bet on Team Jules.

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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!

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.

Silly Rabbit…Tricks R 4 Kids

It’s Halloween, a very special time for a horror movie buff like me. I get to watch all manner of scary movies for a whole month leading up to the holiday, and whether it is new or old I simply can’t resist DVR’ing most of them. As a horror and Sci-Fi geek, I think of things in terms of Sci-Fi, Horror and Comic story lines…a lot. This post started off as an entry about new technologies for Crohn’s and chronic pain, but each of these made me think of a movie at first and then I realized how great they could be for patients, turning a trick to a treat.

Alien is one of my all time favorite movies, definitely a top 10 film. What scared me the most was the fear of the Xenomorph life cycle; egg, face hugger, chestburster and adult. The eggs hatch and the chick (?) attacks a human by attaching to a human’s face and, well…um…pollinating. We as humans complete the parasitic reproduction of the Alien which bursts out of the poor person’s chest in a twisted birth scene. So you can imagine my reaction when I heard about drinking whipworm eggs to try to cure Crohn’s disease, I was just a little bit incredulous. I had to check this out. This seemed like a hard core treatment for desperate patients, I should tell you I was in remission at the time. As I researched these treatments, and flared up again, I realized that I was taking Chemo meds, steroids and narcotics to manage my disease. These worms might be quite helpful to my regimen. They can’t reproduce in humans, so they are only in our bodies for 2 weeks and they help us “dirty up” our bodies. The worm study is based on the “Hygiene Hypothesis” which presumes that Auto Immune (AI) diseases are more prevalent in industrialized nations because we are too clean and can’t build up resistance. At first Worm Therapy seemed frightening but I have to admit it’s growing on me, especially when it could help remedy 60 different diseases. If it’s available and my doctor approves, I will try it, maybe with a shot of tequila.

What would a horror list be without David Cronenberg and Scanners? A great movie about a group of people who have psychic abilities and can kill normal people, the Scanners are fighting each other for world domination. When I think of Scanners I think of the famous head explosion scene…awesome! I also think about migraines, I think we all know someone who has suffered from migraines and the pain they are enduring. What could help a migraine patient without drugs or exploding their head? How about a pacemaker? Yeah, a pacemaker with neurostimulation, a device that is implanted into your back with tiny catheters that thread into your head and disrupt the pain signal. With the help of a remote control the patient can find the right amount of electricity to give them relief. Saving people from explosive migraines, one buzz at a time.

These are just a couple of examples of my favorite movies and treatment ideas that seem scary at first but after further review can be really sweet. They start with a trick and end with a treat, a much better fate than the poor schmucks in these movies. Happy Halloween!

Taking Down A Zombie Clown

I just killed a zombie clown, I double tapped him and everything! This might sound a bit fanciful or extreme, but it’s really not, it’s stress relief. I have a variety of activities that help me relieve the strain of everyday life and chronic pain: reading, walking my dogs, watching movies (like Zombieland), hanging out with friends and shooting.

In my younger life, I was a competitive pistol shooter. My dad and I would train several weeks a year and I would compete at one big event and several small tournaments inOhioandMichigan. Other than spending quality time with Daddio, I learned a valuable skill that could protect and provide for my family. I have always enjoyed my time on the range, it has taught me to be patient, relax and learn to calm myself in stressful situations. I truly am never calmer than when I am centering myself on the range.

Finding a way to deal with life’s trials and tribulations is imperative. Without activities that make me feel better, stronger and more at ease with myself, my life would suck and I would probably have a heart attack. No matter how strong we are, we need to be able to let off a little steam, so the pressure won’t make us explode. Shooting is a family sport for our clan. We all handle ourselves on the range, but more importantly, we all trust each other and know that we have been taught to respect and appreciate the weapon and the safety initiatives involved. That makes it better for me, I know that I can trust my range partner and enjoy my day.

I stopped shooting for several years because I was too sick. While I had plenty of other activities to help me deal with my stress, I still really missed it. Once I was able to get back out there I instantly felt better. I don’t get out as much as I used to, but I’m working on that. I’m also going to teach several of my girl friends the basics of pistol shooting.  It’s going to be a blast! Heh heh heh… It’s also going to be a great way to spend time with my best friends and teach them a skill that they may never try on their own. That’s exciting to me. I am in a place where I can share a cherished pursuit with people who will really appreciate what it means to me.

What do you do for stress relief? The chronic community has more than its fair share of stress. Finding a way to loosen the tension is crucial to our health and mental well being. Having a regular activity that helps alleviate some of the burden can make a huge difference in the lives of loved ones, friends and patients. How do you get rid of stress in your life? I would love to hear about what works for you and what doesn’t.  Please share in the comments or on my website, FB or Twitter. I can’t wait to find out what hobbies you enjoy.


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