Healthier Stay


My 30 Things: Invisible Illness Week 2015

30 Things About My Invisible Illness You May Not Know

JulesEtMoiSunglasses

Donna Kay and Jules at our first in-person meeting! So much fun!

1. The illness I live with is: Crohn’s Disease, Ulcerative Colitis, Chronic Functional Abdominal Pain and AutoImmune Arthritis
2. I was diagnosed with it in the year: 1997
3. But I had symptoms since: 1995, but I have had some minor symptoms for most of my life.
4. The biggest adjustment I’ve had to make is: Changing my plans for my life.
5. Most people assume: That Crohn’s is like eating bad food.
6. The hardest part about mornings are: Managing my medicines so that I don’t get an attack, also the stiffness and swelling in my joints is usually worse in the morning.
7. My favorite medical TV show is: Kingdom Hospital
8. A gadget I couldn’t live without is: My Medtronic Remote
9. The hardest part about nights are: Managing my sleep hygiene so that I can stay as healthy as possible.
10. Each day I take __ pills & vitamins. (No comments, please) 26
11. Regarding alternative treatments I: Am open as long as I research it and can find a reputable practitioner to work together with my other team of doctors.
12. If I had to choose between an invisible illness or visible I would choose: Neither, I would choose health.
13. Regarding working and career: I have adjusted to my new surroundings and I have found other ways to stay social and to keep current with my peers and the world.
14. People would be surprised to know: That I love Karaoke.
15. The hardest thing to accept about my new reality has been: Feeling like I had been taken out of functional society.
16. Something I never thought I could do with my illness that I did was: Find happiness in all of my relationships.
17. The commercials about my illness: Can be silly, but has also brought a TON of awareness.
18. Something I really miss doing since I was diagnosed is: Eating fruits and vegetables.
19. It was really hard to have to give up: School and the plans for my career.
20. A new hobby I have taken up since my diagnosis is: Advocation and crochet.
21. If I could have one day of feeling normal again I would: Eat anything I want and lots of extreme sports.
22. My illness has taught me: To find the positive in as many situations as possible and to look deeper at the people I meet. 
23. Want to know a secret? One thing people say that gets under my skin is: Why don’t you just suck it up.
24. But I love it when people: Treat me like a regular person…but special!
25. My favorite motto, scripture, quote that gets me through tough times is: Proverbs 15:1 A gentle answer turns away wrath, but a harsh word stirs up anger. 
26. When someone is diagnosed I’d like to tell them: Take my hand and a deep breath, you are not alone! . 
27. Something that has surprised me about living with an illness is: The amount of time it takes to try to be as healthy as possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought food with recipes and continued checking.
29. I’m involved with Invisible Illness Week because: I want everyone to know that we can do so much and that we are Chronically Awesome!
30. The fact that you read this list makes me feel: Grateful and humbled.

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Start With an Ember

Posted in Blog Gallery,Newer Posts by Healthier Stay on November 28, 2014
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Submitted for the #ChronicallyAwesome Foundation and #Blogsupport’s #WordFeast Blog Carnival: Happy Thanksgiving!

So many things happen when a person gets sick; so many emotions, transitions and alterations to his/her life. I know this first hand, as a patient, patient’s family member and as a caregiver. I also know that the first things that come to mind in that time are terrible and despairing thoughts that just take up lodging in our heads. It can take time {months, years…decades} to see the blessings that can come from an illness too. Nothing is more important than finding the light in the dark cave. Sometimes the light is just an ember and the cave is miles deep, but there is always a coal. Once I found my ember I was able to tend it and start a fire that helps keep me warm and safe in the dark maw that is my cave of illness. The fire is so damn big these days that I can rotisserie a twenty pound turkey with it!

Find the light in the darkness.

Find the light in the darkness.

When I was first diagnosed I was hopeful for the future still, but once I started getting worse I started to slip into depression. I wasn’t able to do much and I was housebound. My days started running together, wake up watch tv sleep wake up watch tv sleep eat sleep watch tv etc., etc., and so on and so on. I had no routine and I felt aimless and like I didn’t fit into society anymore.

While all of this was happening my Dad was very sick with his Crohn’s, we didn’t know that he was dying. My mother and I were taking shifts for his round the clock care. It was a very hard time and he could have been miserable but he always had a smile for everyone. His outlook was amazing and it was contagious. He passed me an ember.

I realized that life was more than illness and that I still had gifts and talents to share with the world. I started writing a book about my experiences, I found Chronically Awesome and Jules gave me the opportunity to start blogging for her. I took back my life and I love it now. I still have constant pain and problems but they don’t plague me now. I have spent the last two and a half years on “Project Donna” and have been working on making my mind and body as strong as it can be despite my illness. All of this has raised my self-confidence to higher levels than even my healthy self had known. I know it has helped my friendships, my doctor relationships and my romantic life.

I’m always trying to get stronger and I still have a ways to go but I know that I wouldn’t have the chance to be a writer, a podcast host or an advocate if I hadn’t had to go through all of the pain. It’s not the life I planned but it’s the life I live and I want to be my best.

I hope that this post can help someone who is stuck in their own limbo, you can find more in life than pain. I’m passing this ember on, feel the warmth, find your light and pass it on.

Pass it on.

Sing, Sing a Song…

You may not be aware of this, but I Love Love Love live music. When I’m feeling up to it, I try to attend live shows, open mics and new formations of some of my fave local musicians. Music makes me feel better and is an integral part of my life and health. I don’t think that I can overstate the importance of rhythm in healing and pain relief, from focused breathing and Lamaze to Yoga and Tai Chi, our bodies crave it. Alas, that is for another post. This blog is all about the creativity that was swirling around an event I attended, I could feel it flowing through the room. My roommate and most of my friends are musicians. I get to hang out with some really talented and creative people and, most of the time,  I don’t even have to leave the house. I will freely admit that I can get a bit envious of their talent. I’ve always wanted to be musical and therein lies the rub. I haven’t played an instrument since middle school and even though I love to sing, I tend to sound like a dying walrus {so I limit my public displays to comedic relief and acts of vengeance}. My real talent lies in my uncanny ability to hand over a cover fee and support my harmonic homeys.

So how did I end up taking part in a singer/songwriters’ event the other night. My mad skillz were put to use at the door and I thought that was the end of my involvement. I went to support my friend and the several other people who poured their souls out on stage. They put their egos aside and asked the audience to critique their songs. What an exciting and humbling experience to be a {albeit small} part of the creative process in a very intuitive, personal and enjoyable way. I loved it and I want to go back. I had no idea what kind of music to expect, I had only heard a few of my friend’s songs and didn’t know anyone else. Out of the 15 acts, there were at least 7 different musical genres and each song was original. I definitely increased my hipster cred, and I hope that they all will find great success. Everyone in the audience got a critique card for each song. We were asked several questions: Who does the singer sound like? On a scale of 1-10 what would you rate this song? What do you think? There were several other questions and the Songwriters Association obviously spent a lot of time on these cards to help the musicians hone their craft. It was their inaugural event and I think it will be quite successful. I’m jazzed to see how they will build this program and share it with the rest of the songwriting community. As I was listening, I started thinking about what a great idea this showcase is.

I am quite excited to see how we can build our Chronically Awesome community and share in our creative endeavors. Jules announced the Chronically Awesome Foundation on the Chronic Chronicles podcast a few weeks ago. Our group is one of the most innovative that I have ever seen. We have harnessed the power of social media to find each other and tell our stories through FaceBook pages/groups and Twitter chats. Who has two thumbs and spills her guts in a Crohn’s blog? You’re reading her, but I am just one. There are many of us and we each have a different story that we try to share in the most positive light possible. Just through our friendships we help mentor and share our tips, pointers and success stories. We also share our art, including but certainly not limited to writing. I look at the Chronic Chronicles Pinterest boards and I see so many friends sharing crochet, crafting, sewing, painting, patterns and instructions with people they think will appreciate them. My arthritis can flare terribly this time of year, but crocheting helps, I will never run short of patterns and my hands will hopefully keep their dexterity. Thanks to your sharing.

My nephew and the Easter Bunny I made him last year. Warm fuzzies all over!

Numerous studies have shown that a creative outlet can help to lessen the daily wear and tear of chronic illness. It can also raise endorphins and relieve pain. I know that sometimes we can’t keep up with our projects because we are too sick. What can we do? Share our ideas, help our friends learn new skills and/or fine tune their work. Share our insights and help them when they are stumped. We could all end up feeling better and more fulfilled. We just have to create and share. I know that I feel a sense of accomplishment when I have completed a project or helped someone else learn one of my crafts. We can still be inspired and keep learning even if we’re stuck in bed or in the hospital. One of my greatest fears is outliving my usefulness. I do my best to keep my mind sharp and try to keep up with as much therapy as I can handle. I know I’m not the only one and that’s why I want to see this fantastic community and foundation grow quick-fast-in-a-hurry.  We are a loving, positive and productive congregation and it makes a difference, so I want to share these ideas and expand our circle of friends. I can’t wait to see what we do next!

The Songwriter Showcase was a lot of fun.  They were super supportive of each other and very engaged in the songwriting and production process. My friend was my favorite performer, of course, but I was also introduced to new acts, new friends and my Reverbnation profile is a lot fuller now. How cool is that? I was duly impressed and I hope I get to go back soon.

#A4Amonth Day 4: Surprise! Bet you didn’t know…Introvert to Cheerleader!

Posted in #A4Amonth,Newer Posts by Healthier Stay on August 24, 2012
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Day 4: Surprise! Bet you didn’t know…Today’s post theme is all about the reveal. What’s something people would be surprised to know about your life as a caregiver or your loved on. Uncover it and elaborate upon in stream-of-consciousness-style.

One thing that has especially surprised me as a caregiver, is how much I have really grown as a person. One thing that I have been able to do is overcome my crippling  shyness. I really have a hard time in crowds and around a lot of strangers. It’s very easy to just live like that when it is only effecting me, but once I learned that you have to speak up at the hospital or risk your patient’s care, I started talking. I started introducing my patient and myself and writing down the Doctor/Nurse/Tech/Aid’s name and remembering it the next day. I started asking about their day and their families, how they decided to follow medicine as a career and I got to know them. Complete strangers! If I was at a party, I would be stammering all over myself or just smiling and nodding, hoping to see someone I knew. 

This change seemed to come about because I am (unfortunately for me) much more willing to exit my comfort zone to help someone I love than to better my position. It’s worked in many ways though, when my Mom was in a rehab center, she had an awful infection caused by her radiation treatment. She worked so hard to be strong and work on her rehab every day but she kept falling behind. One day we got word that the insurance company was sending her home and she was on her own…I was fit to be tied so I started calling the insurance company myself, I called the helpline and her case manager and found out that we had one way to appeal, her doctor could present her case and if he was persuasive enough and had enough documentation he could buy her some time. I went to each of her care groups, Physical and Occupational Therapy, Social Services, Case Workers, Nurses, Aids and her Doctor, told them what had to be done and withing 2 hours we had a plan of attack and the doctor was able to plead her case the next day. WE WON! They gave her another week without prejudice and tracked her progress from after her infection, not before. Our team would not have been able to work so fast if we had not had a rapport and/or if no one was there to stand their ground.

It’s not just me, I’ve seen it in so many family and care advocates that it continually astounds me, but it definitely makes me so proud! Go Patients, Go Caregivers! Go Team!

#A4Amonth Post 3: From the Fish Bowl

Posted in #A4Amonth,Newer Posts by Healthier Stay on August 23, 2012
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It is hard for some healthy people to understand life in a Chronically Awesome household. Most of the time they think our lives are a torturous “Job-like” existence. Job, in the Bible,  lost his wives, his children, his livelihood and his health all due to a bet between God and Satan to see how faithful he was. In the end he was “reimbursed” 10 times over but he had to lose it all first. That is a horrible story to be compared to. My Dad had Crohn’s and lost his battle, my brother and I have Crohn’s and fight it every day. My mother lost her bout with Cancer,  but never in my life have I considered us Job-like. We have dealt with our problems just like any other family would, one day at a time.

Being a caregiver is often misconstrued as a duty posistion,  someone gets stuck with it because no one else will do it. I disagree. In talking with other caregivers, i’ve learned that most of us do it out of love. We try not to get burnt out because we want to be there for our loved one. We work to have social and private lives of our own and to make sure to employ respite care services so that we remain fresh and healthy. It’s no picnic living in a Chronically Awesome family, but it is my family and there is always love. Whay more can
we ask for?

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.

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!

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

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A Spoonful of Sugar…

Posted in Newer Posts by Healthier Stay on January 1, 2012
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I’ve been asked to write a theme, “What does Chronically Awesome mean to me?”. The answer is quite simple…Supercalafragilisticexpialidocious! In the film Mary Poppins, Mary changes the lives of 2 very sad children and shows them that there are many wonderful times to be had even when life is rough. She shows them that life is what you make of it. If there is a better analogy to living Chronically Awesomely*, I haven’t found it.

A Spoonful of Sugar helps the medicine go down. Life with chronic illness can seem like a never ending cycle of medicine, doctor’s appointments and hospital visits. Mixing that with pain, frustration and brain fog can cause life to feel like a great black hole sucking your life away. This is when we decide how we will live our lives. It is so easy to get lost in the dark swirling limbo of pain and disease, but it can be just as easy to build a life with joy and purpose once you get used to it. It sounds silly but it’s all about finding the wonder in life again and rewarding yourself for the effort. Eventually life is better and we can deal with the bad effects much easier.

I used to sleep my days away. I couldn’t always tell the days apart. I felt like I was worthless because I couldn’t work and therefore I wasn’t a functional member of society. I had had my life planned out and once I got sick it all seemed to crumble. No more college (4 quarters to graduation) no more job, no more dreams. I had no answer when someone asked me what I did for a living and I stopped going out. I was already depressed and my stagnation only made it worse. I just didn’t care. I was in massive pain and cowed by fear and embarrassment so I let it all control my entire life for years. Seven years to be exact. Those were my dark ages. When I finally realized that my life was passing me by I decided to take some kind of action. I chose not to be a victim any more, I was going to control my destiny. That was when I decided to start writing a book and building a good life. I was here so I’d better make the most of my time. I also decided to start seeing a pain therapist and rein in my life. That was 5 years ago and I have never regretted it. I made the choice to live according to my abilities rather than my disabilities. I’m still sick but I don’t let that be the ruler of my mind these days. I made the decision to change on my own but I needed lots of support from my friends and family too.

Chronically Awesome is a lifestyle and a community. Life is measured one day at a time and choosing a new Lifestyle is measured moment to moment. We need friends that understand to help talk us out of a slump and to help each other through a flare. I have watched this community grow so fast in a year and a half, we have expanded from a few hundred people on the internet to thousands, some people have even started meeting in person. That is fantastic!

When someone asks me what Chronically Awesome is to me, I think of how much my life has changed since I decided that my worth was a price above rubies and that my life would still have meaning. I think about the sweet taste of success with each achievement that surpasses my expectations. Life is hard, healthy or sick, but sometimes you just need to believe that someone is out there with a helpful song and a nice smile. My life isn’t “Practically Perfect in every way” and I can’t fly with a parasol but I can enjoy as much of the experience as possible and save up for a jet pack. To me that’s pretty supercalifragilistiChronicallyAwesome!

*not sure of the grammar


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