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.

From Donna Downer to Donna Kay

Posted in Archive Blogs by Healthier Stay on February 27, 2012
Tags: , , , , , , , , , , ,

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!

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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