Healthier Stay


#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!

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#A4Amonth Portrait Post

Posted in #A4Amonth,Newer Posts by Healthier Stay on August 21, 2012
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I have decided to take part in the WEGOHealth blog carnival this week because I think this is a fantastic and fun way to blog. I have also had a very harsh year and I would like to use this opportunity to kick start my blogging again. I’ve missed you guys!

August 21 • Day 1: Portrait Post
Write a descriptive portrait of your loved one. Share qualities that make them, them – and include an image! (A photo or
creative work of them!)

I am writing about the two people I have advocated for the most {other than myself} my parents, Melissa and Dick. It may be a bit different from other caregiver blogs because they both passed away due to their illness. My father left us in 2005, and my mother just moved on in May of this year.

 

These are pictures of my parents as I remember them, healthy, vibrant, happy and enjoying their lives whole heartedly. I was privileged enough to be there to help my Dad as he fought Crohn’s disease and my Mom as she battled Cancer. I learned to be the person and writer I am by watching how they lived, loved, raised a family, fought for their strength and how they left us. I learned to advocate for myself through my Dad and I learned how to fight for and care for others from my Mumsy. These lessons are etched into my soul.

I have to admit, my grief is still suffocating me and I’m crying on my laptop right now, so this will be a short entry. Before I finish, I want to explain something to the other caregivers out there: We fight for our patients and we fight the disease and we do all that we can to navigate the healthcare world, but fighting until the end is NOT a failure. We are there to help them in any situation we can, up to and including having their backs until they go. It’s depressing as hell, I know, but it’s the truth. Do your best, give it your all and never regret being there for your patient!

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.

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.

Crohnically Dreaming

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

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

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

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

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

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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