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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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.

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.

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.

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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