Healthier Stay


Pot Blocked and Persecuted

What’s the punishment for pulling a “dine and dash” on Donna and Eric or for framing Van Wilder? A mega dose of laxatives and explosive diarrhea, of course, strategically timed to cause the most humiliation, hilarity and hi-jinks. I’ll admit I think it’s funny, because it makes me slightly uncomfortable like all good humor should, oh yeah and it’s fake. An every day real life situation like that would be freaking awful.

I have two types of Inflammatory Bowel Disease (IBD), Crohn’s and Ulcerative Colitis (UC), which can cause all kinds of random and often unexpected digestive meltdowns. Just living with IBD can be highly embarrassing and humiliating.  IBDs are also invisible illnesses, meaning they affect us, and can disable us, but there are not a lot of outward symptoms, so people don’t always believe that we are sick.  I have a disability but I don’t need a wheelchair, a walker or a cane. What I do need is an available restroom.

Sunday afternoon I was Pot Blocked at my friendly neighborhood PetCo store because I didn’t look sick enough. There was no public bathroom so I asked an employee if there was one on premises, she was going to admit me to the private loo but had to finish helping her customer first and asked her superior to help me. The manager promptly stated that the bathroom was for employees, the “handi-capable” [her words} and pregnant women only. When I told her that I had Crohn’s she said she was sorry and walked away. I could have pressed the issue, but honestly I had to go too bad. I was mortified, angry and close to tears. The whole exchange left me feeling dehumanized, I can’t use their actual bathroom but my dog can poop on their floor with no problems. I would rather die than have an accident in the aisle. I could have told her that it is against the law and that she was practicing discrimination but I had to leave. It was 19 excruciating minutes before I could get to a public facility with available, um, facilities.

I am just one of millions of people who have to do battle with their bodies every day and as embarrassing as our bodies and diseases are, we are amazingly resilient. The term “Chronically Awesome” is used a lot on What the Jules’ site; it is a choice that each of us has made to keep our lives balanced and not to give power to our diseases. This week I have been continually amazed to learn just how many Chronically Awesome people would stand up for me. I told Jules what had happened and that I was absolutely livid. She encouraged me to share with you. She and I posted a few tweets each and the community ran with it; sharing my story, sending me legal advice and appealing for advocacy. I am so proud to be affiliated with such a caring and supporting group. Thank you for having my back!

This is how I will continue to take my stand:

Ally’s Law for restroom access makes it illegal to deny us entry in retail establishments. I will help in any way she needs to make sure all 50 states adopt it. We have it inOhiobut obviously we need to improve awareness and empathy in my dearBuckeyeState. Locally I will go through the proper channels to report this event and find out what else I need to do and update you with my progress. I don’t want anyone else to experience what I went through, it was quite painful and frustrating but it could have been a lot worse and no one deserves to be treated like this. We deserve our dignity and self-respect. Stop the Pot Block!

If you have a story like mine and you feel like talking about it please contact me personally or leave a comment below. I would appreciate the chance to talk to you.

*At press time I have emailed PetCo following the channels that they have provided and haven’t heard back.

3/1/12 I have received a tweet from PetCo requesting my contact information. I have sent it but have not received a response.

I will continue to keep you posted.

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.

Crohn’s Has Hit the Big Time

When I was a kid, my Dad was in the hospital a lot. Trying to explain what was wrong with him was definitely an arduous task. There was not very much information available. When I was four years old, I would tell people that my Daddy’s tummy was trying to eat him. That’s how I understood the situation because Crohn’s was such an enigmatic disease. Some of his guts were bad and the doctor had to remove them because they did not play well with others. In less than 30 years, Crohn’s has exploded from a rare, enigmatic disease to an all star ailment. Crohn’s has hit the Big Time. For years, my dad was the only one I knew with Crohn’s and now almost everyone I meet has heard of Crohn’s disease.

Obviously, there are pros and cons to this development, these days approximately 500,000 people are diagnosed with Crohn’s in theUnited States. There are definitely more occurrences than when my dad was diagnosed. It is also much easier to pinpoint the symptoms of Crohn’s these days. Tests and biopsies are usually outpatient and no longer have to leave permanent scars, so more people are properly diagnosed.

The reason I think Crohn’s has become a “Big Time Player” is we now have public exposure (the good kind not the trench coat kind). We have resources that have not been available in recent years. I’m really happy because there is a plethora of information about Crohn’s and other Inflammatory Bowel Diseases. There are commercials, Public Service Announcements, web sites and Celebrity Spokespersons. Heck, there are even Class-Action lawsuits! Crohn’s and IBD are in the spotlight and I am thrilled. More awareness means more research, which leads to better chances of a cure!

With the new celebrity status, and celebrity patients, the internet is teeming with information for patients. That’s fantastic, but with great exposure comes great consternation. It can be hard to know which resource is the best for your needs. There are lots of books, web sites and WebTV channels out there; these are the sites, channels and organizations that I use. *Disclaimer-I am not a health care professional. I use these resources to research my posts and my own illness. Any information or regimen changes should be discussed with your own medical team.*

Websites:

The Crohn’s and Colitis Foundation is the foremost expert about Crohn’s and IBD and also the most well known.

Webmd.com is known for their helpful information and a user friendly site.

Health.com I like this site a lot. I think it is very easy to use and answers a lot of the questions I have in slide show form. Fun!

Emedicinehealth.com is another great resource that explains the disease, symptoms and procedures.

Everydayhealth.com easy to understand and explains Crohn’s from the early stages through remission.

Wegohealth.com a web TV service where patient advocates share their stories and advice on the Crohn’s channel.

Painchannel.tv is more for the chronic pain that accompanies Crohn’s and other chronic illnesses. Each episode deals with different types of pain care and management.

Of course I also recommend www.healthierstay.com andwww.whatthejules.comfor more info and interaction with the Crohn’s, Patient Advocate and Chronically Awesome community.

I hope these will be of help to you. So much has changed since I was little and we now have great resources. I’m always trying to find new developments that will help us, as patients, lead healthier, more normal lives. One thing I have learned is Crohn’s is an autoimmune disease and my four year old explanation wasn’t so far off.

Crohnically Dreaming

Posted in Archive Blogs by Healthier Stay on February 27, 2012
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Since age 12, I have wanted to be a Marine Biologist. I wanted to work with marine mammals while living on a boat and eating Crepes Suzette with Philippe Cousteau. In high school my science club spent two spring breaks in Key LargoFL, with the Marine Resource Development Foundation (MRDF). We studied mariculture, ecology, biology and astronomy. The first year we snorkeled the mangrove forests, turtle grass shoals, gorgeous coral reefs and way out in the deep blue sea. Year two, we were SCUBA certified and able to experience those areas in a more in-depth manner. I was in heaven. This was what I wanted to do forever. The one thing I missed was a manatee. I wanted to work with the manatees.

Since Ohio is a land-locked state, I studied Biology with the hopes of going to grad school in Guam. Then I got sick. I realized that with Crohn’s I would not be able to live out on a boat, away from quality medical access and ready access to bathrooms. I switched my major to secondary education and decided I would share my love of Biology with
high school students. Then I fell in love with the Hebrew language and Archaeology and switched my major again. Eventually I was too sick for school and I had to drop out with 4 quarters left. Life sucked. I thought I would just have to deal with the fact that my dreams and my life were no longer compatible.

10 years later… I went to visit my friend Kara in Florida. I decided that I wanted to go somewhere for my 29th birthday. I saved up my money and left for St. Pete the day after my birthday. Kara and I have been friends since 6th grade. She was also in the science club and we were dive buddies for both years. Kara was able to stay on her dream track and now works as an Oceanographer. She had planned a wonderful vacation for us; we went kayaking with alligators, hiking in treetops of a national park and –Dun Dun Dunnnnnnn– snorkeling with manatees in Crystal River! Best birthday trip EVER! The manatees were everything I had expected and so much more. They love to play and be scratched and tickled and one little guy had a crush on me. He kissed me at least five times. I was finally able to swim with the manatees and I was so happy. That was five years ago and I still grin every time I think about it.

This summer my dreams have been reinstated. I volunteer for St. Jude Children’s ResearchHospital’s-Columbus Office, and at their big dinner event each year at The Columbus Zoo. This was my third year at the event and I finally got to meet Jack Hanna! By the way, he is exactly the same in real life as he is on TV. I knew I only had a minute to speak to him, so I complimented him on the manatee exhibit. I told him that I had been to  Crystal River to swim with the manatees and that it was one of the most amazing experiences of my life. I gushed and gushed for about two minutes straight. Finally, when I came up for air, Jack told me that they need volunteers to help tend to the manatees and aquarium here. All I need to do is take a SCUBA re-certification class. I can’t even tell you how excited I am. I thought I would have to give up on my dreams because of my disabilities, instead, I just have modify accordingly for my abilities

I have several dreams that I gave up, but I’m revisiting them and will do my best to incorporate them into my life. I may not be able to live on a boat, but I can volunteer at the zoo. There is a bathroom next to the exhibit and I don’t need to worry about medical access. I may have Crohn’s for the rest of my life, but now I will have my dreams too. To both of them I say, “Bring it on!”

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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