Healthier Stay


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.

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#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!

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.

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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