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.

Advertisements

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.

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

(more…)


%d bloggers like this: