Thursday’s Workshop 2 Parts [1] Invisible Disabilites [2] The Joy of Friendships

Wayne and Sherri Connell shared from their hearts about marriage when chronic illness is a part of life as well as information about their role as invisible disability advocates.

Then Lisa interviewed Jenni Prokopy, Christine Miserandino and Kerri Sparling, who are all well-known in the illness community due to their blogs, and they shared in a lively discussion about the friendship aspects of chronic illness.

All of them still take it one day at a time when it comes to learning their limitations and what they can do. Christine calls her time after an event that takes a lot of energy “preparing for a crash landing.” They discussed how important it is to have friends “in person” and stay connected, as well as friends online and how helpful they can be in our journey of coping with illness.

You can still listen this program any time as it is archived. Either go to www.invisbleillnessconference.com or click in the BlogTalkRadio blue box to the right of this post.

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Invisible Illness: Type 1 Diabetes

If you just snapped a quick picture, you wouldn’t see it.  Not unless you were looking for the small signs, like my insulin pump.  Or my spotted fingertips.

Type 1 diabetes isn’t something you can see on me.  It’s not an illness that, at this point in my life, comes with any constant external symptoms.  I am fortunate enough to not use a wheelchair or need vision assistance devices.  You can’t see my disease, even though it’s something I manage every day.

I seem “normal.”  (Stop laughing.  Let me use the word normal for the sake of this blog post, at the very least!)  I seem like your average 30 year old professional woman (again, stop laughing), recently married, inspired to achieve, and happy.

And I am happy.

But my good health is not without great effort.

Type 1 diabetes is a chronic illness, and one that has required daily maintenance and effort from me, and from my caregivers, for the last 23 years. Every morning starts with my meter.  Every meal I’ve eaten in the last two plus decades has been preceeded by a blood sugar check and an insulin dose.  And every night has my finger pricked by a lancet before my head hits the pillow.

This isn’t a pity party.  Not by a long shot.  My life is healthy and I have a very fulfilling existence, even if days are book-ended by diabetes and even if I’m now wearing medical devices 24 hours a day, every single day.  And back when I was a fresh-faced little kiddo, people seemed to want to cure my disease because they didn’t like the idea of a small child dealing with this disease.

Kids are fun to cure.  They’re cute.  And their futures seem worth investing in.

What confuses me is how quickly people forget.  Type 1 diabetes became a part of my life a long time ago, and I don’t remember even a snippet of “the before.”  But even though I’ve lived very well with this disease and kept it from defining me in any way, it’s still here.  And it’s still something I deal with every day, regardless of how well or poorly controlled.  But just because I’m no longer a little kid with the bright, shining future, am I any less diabetic?  Any less deserving of that cure?  Just because you can’t see my disease, and because I seem to have it under physical and emotional control, does not mean it’s past the point of deserving a cure.

Here is a vlog post that I did back in February about vlogging during a low blood sugar and how “diabetes can look so normal yet feel so rotten.”   It’s a video that shows how invisible diabetes can be, but how visible it feels from the perspective of those who live with it:

Children with diabetes grow up to be adults with diabetes.  And all the while, we’re still ready for progress. And for hope.  And for a cure.

This week, September 14 – 20th, is Invisible Illness Awareness Week.  And today, I’m raising my voice for type 1 diabetes.

National Invisible Chronic Illness Awareness Week is a way to raise our collective voices to improve the lives of people living with chronic illnesses.

Kerri Morrone Sparling is the author and creator of Six Until Me, one of the first and most widely-read diabetes patient blogs. Voted “Best Patient Blog” in 2008, SUM has been a reliable source of diabetes lifestyle information in the blogosphere.

Six Until Me already has a strong and loyal readership comprised of people with diabetes, the caregivers of diabetics, medical professionals, and those living with chronic illness, and has been spotlighted on WebMD, The Lancet, AOL, US News and World Report, and CNBC. She has contributed to many diabetes-related websites and publications, and is a passionate advocate for diabetes awareness.

With and over two decades of experience living with type 1 diabetes, Kerri earned a position as Editor and Community Leader for a diabetes-media company. In addition, her work has appeared in her dLife column, Generation D, her diaTribe column “SUM Musings,” and she has guest-blogged on several well-known medical and social networking sites. An expert in social media and its influence on patients, Kerri has spoken at new media conferences and has been a repeat featured guest on dLifeTV.

Recently married and looking forward to starting a family, Kerri and her husband Chris reside in New England.

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The Cave of Denial: A Place to Hide

Have you ever known someone with a chronic but manageable illness who did not do what was necessary to stay healthy? Maybe they didn’t lose the weight the doctors told them to and now they need surgery for knee problems. Maybe they didn’t change their diet as they should have so their heart disease has progressed. Maybe they didn’t take their meds, do their treatments or follow the recommended physical therapy. I think it’s safe to say we’ve all known someone, who at some time, has not followed through with a medical regimen and paid the price in some way.

How did you feel about it? Were you angry? Annoyed? Dismissive? Sad? I know, for me, when I see someone with a manageable illness and they are choosing not to control it, I get irritated. Sitting high atop my horse I look down my nose and say “Poor me. I have an illness that is mostly out of my control. What I would give to have an illness like YOURS–one which if I chose to be diligent I could be healthy for the rest of my life.” It seems like such an easy choice, doesn’t it? If I follow this set of guidelines I can be healthy and if I don’t, I will be sick. How could someone choose not to lose weight, change their diet, take their meds, doe the treatments or stick with the physical therapy? And when they don’t do what they could to stay healthy, do they deserve our sympathy when their health declines?

Yes, at my worst, I have saddled up my high horse and deemed people silly for their laziness or lack of foresight. At my best, seeing someone who has a controllable illness neglect themselves has filled me with frustration and sadness. This week, I discovered I was that “someone.”

I was diagnosed with diabetes in 2000, shortly after my second transplant. I was absolutely devastated. I saw diabetes as a miserable life sentence of restrictions and complications. At the time, my devastation was accompanied by extreme fatigue, stomach pain and nausea. I was planning on returning to college and, after the diagnosis, I felt so flattened I called and canceled my enrollment. Diabetes was messing with my life and was not welcome in my illness repertoire.

It wasn’t long after that I had a real change of heart. I discovered that I had some pancreatic function left and didn’t need insulin right away. Because my diabetes was caused by the prednisone after transplant, it was considered a combination between type 1 and type 2. Maybe this wasn’t so bad after all. With some oral meds, I had about a year of eating and behaving normally with little diabetic interference.

Even after the oral meds lost effectiveness and I was put on insulin, things still didn’t seem so bad. My doctor was aware of my need to gain/retain weight and his philosophy was that I should eat anything I wanted but “cover myself” with appropriate amounts of insulin. I followed his orders initially but often found myself with low blood sugar–a horrible feeling I wouldn’t wish on anyone. For anyone who hasn’t experienced it imagine sweating profusely, your heart racing, your body convulsing and your brain slowing to the point it is unable to help you with any concrete suggestions like “get some juice.” I have spent minutes in the kitchen staring at the refrigerator unable to gather enough menatl capacity to remember what I was supposed to do next. At some point, I began to have anxiety about taking insulin because I didn’t want to have another horrible low blood sugar experience.

I began to notice that my blood sugars seemed to balance themselves out eventually, leading me to self diagnose myself as still having pancreatic function. I began to use insulin less and less. I think, for about a year or more, I actually put it out of my mind that I was a diabetic. I rarely checked my blood sugar and, when I did, if it happened to be high I always had an excuse. I would convince myself about why it was high at that moment but that “really wasn’t normal.” I went right on neglecting myself.

A few weeks ago, I sat in front of my doctor and told her all of these things; I had pancreatic function, my diabetes didn’t need insulin, nor did it need managing. I was there for fatigue but I just knew diabetes couldn’t be the cause. I even gave her blood sugar levels from years ago as my “average morning numbers.”

It’s embarrassing to write all of this now. When I got home from that appointment, I decided to just try “an experiement” and check my blood sugars more often. They were all over the map and very high. Consistently. It “really was normal.” I began taking insulin as I had been prescribed so many years ago. Like a magic trick, I had energy again. My stomach began working better and even my mind was more clear. I was a diabetic and I needed to manage it. I had come to the end of my excuses and stories.

If you find yourself on your high horse looking down at me now, shaking your head, I don’t blame you. I, of all people, shouldn’t be guilty of such neglect. I, “sick girl speaks,” who preaches about be proactive, getting real and facing your truth. I, who have had two double lung transplants and values the time I have been given. How could I be so dumb? So naive? So delusional? So irresponsible?

Like many people, I think I found a few hiding places to keep me camouflaged until I was ready to face the enemy. So what are some of the factors that led me, and perhaps lead other people, into the cave of denial?

Overwhelm
After my first transplant, I was dealing with a new and complicated medical regimen. I was in a deep depression caused by the prednisone taper. I was attempting to force myself into picking a career path to determine the course of my life. I had just gotten the greatest gift a person could ever be given and hadn’t even begun to process all of what happened.

When diabetes came along, I thought I might crash down like a house of cards. I simply didn’t feel like I could handle one more thing. When I started getting some messages that it might not be so bad, I clung to the idea that maybe this was something that didn’t need much attention after all. I delighted in every clue that might support this theory and gathered them like a bouquet of roses. Even after the overwhelm of my life diminished, I was so convinced that this bouquet was real, I never even questioned it. I just kept living as a person with a mostly functioning pancreas.

Annoyance
Diabetes is nothing if not annoying. It is constant. Aside form the obvious, checking blood sugars 5-6 times a day and giving insulin, there is the side effects that come when the blood sugars go too high or too low. Neither feels good. Every time you eat you must count the carbs in the meal and adjust the insulin based on that number–this I find intensely tedious. A good diabetic usually feels like they spend most of their day calculating, checking, giving insulin and adjusting when the dose is not right. It’s annoying. Do I sound like a whiner? Maybe. Because, again, diabetes is something that can be managed if you stay on top of it. But here’s the simple, bottom line. The annoyance of diabetes drove me into the Cave of Denial because I Just Didn’t Want It.

Lack of Immediate Impact
We all know that diabetes can have devastating results when it’s not managed. Amputation and death are understood to be a likely outcome for an unmanaged diabetic. While I understood that intellectually, for the first 8 years I was a diabetic, I didn’t feel the effects very often. If I did, I was unaware that what I was expereincing was from diabetes. Conversely, I did feel profound effects from the insulin–sometimes it made me nausuaus and, when I gave too much, made my blood sugar plumit. On some level, I began to associate managing diabetes with feeling bad and not managing it with feeling good. This made my journey into the Cave of Denial even easier.

It wasn’t until I discovered that diabetes was negatively impacting something I loved that I became serious about treating it. That something I loved was my life and my career. I was feeling so tired all of the time that I was no longer feeling enthusiasm for holidays with loved ones, giving my beloved lectures or watching my favorite TV shows. My emotional self was flatlining and it was freaking me out. When I realized diabetes was the culprit, the impact it had on my life became real. It wasn’t until diabtes went from abstract to concrete that I wanted to crawl out of the Cave of Denial and get real about being diabetic.

There are people who will follow medical directions to the letter without ever missing one moment of dedication. There are people like me who will be dedicated about some things (like transplant meds) but neglectful about other things. I have had some parents of chronically ill children ask me how I recommend they make their child be compliant. Sadly, I think in some cases it takes experiencing the negative effects of an illness to become motivated to do better in the future. For some of us, the first step is finding something meaningful to live for and using that as a driving force to stay healthy. We are creatures who move towards pleasure and away from pain. Sadly, sometimes the Cave of Denial feels like a pleasurable place to hide; far less painful than the work, annoyance and discomfort of compliance.

I don’t mean to suggest that we should all neglect our healthcare treatments until we get into enough trouble to be motivated to compliance. In some cases, that level of neglect could cause so much damage that a change of heart would not be enough to return the person to health.

Ideally, we would all do what is best for us all of the time. I only wish this was the way it worked for everyone! I simply write this as a guilty party, someone who has spent years in the Cave of Denial, so that we all might have more compassion for each other’s struggles. I know it is frustrating to watch someone who could be healthier not take full advantage of what is available to them. Perhaps, with a different understanding, healthcare professionals and loved ones will be able to discover new ways to draw patients out of the Cave of Denial. And sometimes, as much as we wish it weren’t true, some of us have to learn the hard way how much we want to live.

After spending over 30 years in and out of hospitals, Tiffany Christensen realized she’d had a lot of practice at being a patient! After getting her first lung transplant for cystic fibrosis, she was surprised to find herself waking up in ICU with another set of donor lungs only 4 years later. 6 lungs in one lifetime? That’s a lot of lungs. Taking her patient experience and her love of pondering, she combined them to create a book, a blog and a speaking career. Her book is called Sick Girl Speaks!: Lessons and Ponderings Along the Road to Acceptance It is available at Amazon.com.

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Being a Teenager with a Chronic Illness

Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

On my twelfth birthday I was so excited to be entering my teenage years soon. My next birthday would make an official teenager and that made me feel like I was on top of the world. Images played in my head of what I thought my teen years would look like= hanging out with friends at the mall, watching TV, jumping on the trampoline, and possibly dating boys! That’s what I thought my teen years would look like… but God had other plans.

Soon after I turned twelve I went into a coma. And I woke up with the life altering diagnosis of juvenile diabetes. God decided my life wouldn’t be a “normal” carefree teenage life from that point on, and that was hard for me to accept. I was introduced to a regimen of diet, exercise, and needles.

And a few years later I was diagnosed with a few other chronic ailments which then included other things I would rely on, like an inhaler for asthma. I definitely didn’t imagine an inhaler or needles as I looked forward to my teen years.

Having to rely on an insulin pump to stay alive made me rely on my Bible in a whole new way. God allowed me to face struggle and strife in the form of invisible illness so I could get to know Him in a more personal way. And because of that, I’m thankful.

When you’re diagnosed with a chronic illness at a young age you face new experiences like high school and dating, along with doctor appointments and many tears cried. But it’s important through all of this to remind ourselves that in our weakness comes His strength.

Other teens may lean on Him, but we collapse into His arms. And I think that’s an absolutely beautiful thing!

Naomi Kingery, also known as the The Diabetic Diva, is the author of Sugar Free Me and a speaker for Invisible Illness Week (see schedule). Visit her web site at www.livetolovediabetes.com .

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Be a Guest Blogger!

Are you interested in having a special blog post you’ve written about living with illness (especially an invisible one?) We’d love to consider it! Please submit it here and we will respond as soon as possible. If it’s accepted we will let you know the date it will appear. And yes, it’s okay if it’s been reprinted before. Just let us know when and where.

There are hundreds of thousands of blogs about living with illness and we’d like these posts to represent all invisible illness. So if you or someone in your family lives with anything from leukemia to sensory processing disorder, panic attacks to multiple sclerosis, depression to Myalgic Encephalomyelitis,  alopecia areata to diabetes… we want to hear from you! There is no illness that is too rare.

If your blog is selected, you will also receive an “I was a featured blogger for Invisible Illness Week” button to place on  your web site!

If you are looking for blogging topics visit our Bloggers Unite site where you can also sign up to commit to blogging on your own site for Invisible Illness Week and get the badge.

Please consider adding our logo or button or the badge (on the main page) to you site, Twittering about II Week, whatever you can do to help us spread the word. We want this to be an exciting time where people from all over the world with a variety of illnesses come together for support, encouragement and to create awareness about invisible illness.

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