Tag Archives: Chronic Illness

#Goals- for 2019, that is.

Happy (almost) New Year, friends! Confession: I’m one of those people who loves New Years, because I love the symbolism of having a whole, fresh year in front of me. Unfortunately, that excitement normally abates by mid- January, and I sniffle and complain about being cold for the rest of winter. But, for now, while I’m still feeling motivated, I wanted to talk a little about goals.

How do you eat an elephant?

You’ve probably heard this before- and the answer is one bite at a time. I agree that you must tackle big goals in small increments; however, my problem is that I normally want to eat an elephant, and a hippo, and maybe a kangaroo. Don’t worry, 2019 isn’t the year of wild game hunting or eating for me. I’m realizing, though, that I have a lot of goals and few plans to be successful. I read a book recently that talked about visualizing your goals in intricate detail. The idea is that you have to know exactly what you want and imagine being successful to accomplish your goals. That’s not a problem for me. I can easily day dream about a multi-city book tour- or putting on jeans that don’t make me feel 15 pounds of potatoes in a 5 sack. I struggle with actually devising a path to get there.

That’s where you come in- because I can’t be the only one falling off the metaphorical wagon by mid-January. I’ve created a Facebook group for those with chronic illness (physical or mental) who have 2019 goals to crush. The group is for the person who wants to gain weight or lose weight, commit to eating paleo, commit to eating 3 meals a day. It’s for the person whose goal is to take their medication regularly or wean off certain medicines- or the one who wants to begin gentle yoga. It’s for any person who has a 2019 goal and wants some encouragement along the way.

If you want to join me, click here. (Yeah, that’s right. Click the word.) If you aren’t interested, that’s totally fine. Everyone doesn’t get quite as excited about New Years as I do, and that’s probably the more rational way to be. All I ask is if you join the group that you be willing to share one of your goals with the group. (It’s cool if you have secret personal goals. No judgment; I don’t expect you to share those!) I look forward to beginning this journey with some of you- and I look forward to accomplishing some Crazy, Chronic Life community goals in the coming year.

Peace, love, and health.

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Fricka Fracka- What the Heck is BRCA?

Hiya! Howdy! Ahoy there, mateys! I’ve missed all of you. I have been so very absent from the blog lately, because I had no idea what the heck to tell any of you. So . . . I’m going to start at the very beginning- because “The Sound of Music” taught me that is a very good place to start. All of this is important, because it leads to a coming announcement for the Crazy, Chronic Life community- but I’m going to save that for a couple days.
If you’ve read our book, you know that medical research is important to me. So much so that I am registered with ResearchMatch.com to participate in medical research studies. Typically, it consists of me filling out questionnaires and submitting them to someone who is compiling data for a study. I received an e-mail asking me to participate in a genetic testing clinical trial at Vanderbilt University. All I had to do was allow the study coordinators to collect a vial of blood- and I got a $40 Amazon card. Character flaw admission- I will do almost anything for an Amazon gift card.
So . . . here’s the thing. If you allow someone to analyze your DNA, you will find out stuff about your DNA that you would prefer not to know. In my case, I got a letter (almost a year after I had given the blood sample) telling me I had a pathogenic mutation on the BRCA2 gene and should see my doctor immediately. Here’s the embarrassing part- I had no stinkin clue what that meant, so I shoved the letter in a drawer. I learned my coping skills from an ostrich apparently.
A month or so later during a check up with my PCP (I had lost 3 pounds since my last check up, so I was feeling rather proud of myself), I asked if he had any idea if a BRCA2 mutation was an issue. I’ll be honest; he did a google search in front of me. Then, he informed me that I had an 87% lifetime risk of having breast cancer. 87%, friends. Y’all, my boobs are trying to kill me, and I didn’t even know. He continued to tell me that the recommendation is to have a hysterectomy and oophorectomy by age 35 and a double mastectomy by 40. What the actual heck?
Now, I’m not the type to completely base my life on a Google search. So, I scheduled an appointment with my gynecologist- but remained relatively calm. I talked to Joe about it, and his initial response (and we’ve come along way since this time) was, “You can’t start cutting stuff of your body because you’re scared you might eventually get cancer.” To be honest, I agreed with his assessment of the situation at that point. Full disclosure: when I got the first problematic mammogram call back, Joe responded by vomiting, crying, and promptly melting down- in a public venue. Y’all, this has been an ORDEAL.
Jump ahead a few months, 2 genetic counseling visits, a high-risk coordinator visit, and a couple breast lump scares that turned out to be nothing, and I’m here. I have an over 80% chance of having breast cancer between the ages of 30 and 50. I have a greater than 50% chance of ovarian cancer- and an elevated pancreatic and melanoma cancer risk. I’m compiling numbers, so you might see higher and lower odds depending where you research. However, the point is, my body is just itching to make a tumor, because it has no idea how to NOT make tumors.
It’s been a scary few months- and the concerns have been so far outside of my normal realm of medical concerns that I haven’t felt equipped to process them. I haven’t told the CCL community, because I didn’t know where to begin. Now, as a new year is approaching, I feel empowered. While I had no idea when I entered this genetic study that I was going to get life changing information, I am grateful, because this information will inform my decisions (and my family’s- which is a whole different and serious blog) as I move forward. More importantly, I know to be vigilant about screenings and self-checks- things I had never considered prior to this information.
Why am I telling you all this? Because, I can’t stand for ‘peace, love, and health’ and keep major health secrets. Additionally, if you have a strong family history of cancer, I want to encourage you to have a genetic cancer panel. (I actually had a second panel completed in case the research study genetic test was flawed.) Waiting for results is torturous. The only thing worse is trying to understand and coordinate a plan once you have results. However, ultimately, knowledge is power.
I asked a patient leader group that I’m in what they do when they get a new diagnosis. I had literally no stinkin clue if I was supposed to be an advocate for EDS, POTS, chronic illness, invisible disabilities, and, oh yeah, BRCA mutations. I still don’t exactly know. However, if my story and my BRCA journey informs or inspires someone else- then I’m all in.

Peace, Love, and Health.

The Day the Squirrel Got Stuck to the Highway

Alright, kids, gather round. I have a story. This story- though disturbing- has a purpose, I promise. So, just hang with me, please. Every young driver can tell you about the first time she accidentally hit an animal with her car. It’s upsetting and morbid and, based on my frantic swerve of avoidance, quite dangerous. I was around eighteen and driving the interstate between Corbin and Williamsburg (Kentucky) when I saw a squirrel skittering out in front of my car’s path. I screamed (which is my very helpful response to a crisis) and swerved- but ultimately felt the awful “Clunk” as I rolled over the little guy.
Imagine my surprise, when I looked in my mirror (to pay my respects to the poor critter) only to see Little Guy was still alive- sort of. Instead of hitting the squirrel with one striking blow, I ran over his tail. Let me say that again- I only Ran. Over. His. Tail. So, I look in my rearview mirror expecting to see devastation (which, I suppose the scene I saw was technically devastating as well), and instead, I saw a Little Guy with his tail flattened to the road but otherwise very much alive. If you’ve ever believed squirrels weren’t self-aware, then you’ve obviously never witnessed a squirrel running frantically- hoping to unstick his flattened tail from the interstate.
Now, I realize this story is HORRIBLE. Fifteen years have passed, and I would still go back and change that poor squirrel’s tragic fate if I could. However, the ridiculousness of the situation isn’t entirely lost on me- rather than accidentally striking down an animal- I somehow pancaked the poor thing’s fluffy tail to I-75. If that isn’t some sort of strange luck for both me and the squirrel, I don’t know what is.
I’ve thought about that poor squirrel a lot in the years that have passed since our unfortunate meeting. I have this bizarre hope that he somehow remembered his friends and family on the other side of I-75 and that gave him the will to pull his very fluffy but very stuck tail up from the interstate and continue with his life. I hope he had a weird story to tell all his squirrel friends about why his tail wasn’t quite as voluminous as the other squirrel’s. Heck, I hope he got a really cute squirrel girlfriend out of the whole ordeal. But, Little Guy (the squirrel), has become a bit of a symbol for me over the years.
You see, I, like the squirrel, get caught in moments where I’m very much alive but also very much stuck. In the days that have followed since Joe returned to school for the fall semester, I feel like I’m stuck in my own failure to launch situation. Much like my squirrel friend from many years ago, I want to move forward, but I’m a bit tethered by life’s circumstances. You see, I want to work- but my health won’t allow it. I want to be the ultimate house wife- but I get winded from carrying the broom through the house. I’m trying, but I’m stuck.
Ultimately, my tail is stuck, and I’m scrambling for a foothold. The pain of leaving the classroom never fully goes away, but it gets more tolerable with time. However, the thing no one tells you about disability, is there’s no room for growth. I’m never going to advance in my field or reach a level of professional competency as a disabled person. At times, it feels a little hopeless. Like, Little Guy, I’m still very much alive. My heart is beating and my brain is firing (sort of). However, my tail is stuck. I’m trying to move forward by scraping and grasping at anything and everything and can’t establish a foothold in this new reality.
So, there’s nothing left to do but to scrape my tail up from the road. I said that I hoped my squirrel friend found the power and the will to pull his flattened behind off the interstate. And, well, I think enough of myself to want the same thing for me. I’ve found myself waking up and not finding the will to get out of bed lately. I don’t know what I’m getting up for (except Zoey- I always get up when Princess Zoey beckons) because my days lack purpose. However, in an effort to act as my own spatula and scrape my furry tail from the road, it’s time to find that purpose. I don’t know what is next for me. I’m entertaining ideas of a new book, or maybe a new in person support group (in addition to the current one- not replacing it!). Maybe I’ll start a youtube channel or just enjoy my new oven by learning new recipes. I just know that this week of lacking ambition isn’t the beginning of that life. I know that even if my silly, squirrel tail feels stuck by medical tests and doctors’ offices who don’t return calls, it doesn’t mean that my life is forever and always stuck in this place.
So, friends, I’m telling you now. I’m picking my tail up off the road and moving forward. I’m not sure what’s next, but I promise it will be an effort to help all of us. And, please, know that I’m truly sorry that Little Guy had to suffer in order for me to learn this lesson years later.
Peace. Love. Health.

In case you’re wondering where this blog’s title came from, click here.

Community Unity Opportunity.

I’ll be honest, I’m not at all grateful for illness- especially illness of the chronic variety. Fortunately, I’m not the type who believes that God made me sick to teach me some divine lesson, so I don’t feel any compulsion to be thankful for this portion of my life. Having said that, I realize that the longer I continue my journey of life with chronic illness, the more I am grateful for community. Before my symptoms reached a life altering level, I had no idea what it meant to be surrounded by support from people I had never met.
While I consider myself very much an introvert now, for most of my life I’ve been surrounded by people. I’ve been a participant in church groups and choirs, committees and classes, clubs and organizations. Now, my body can’t keep up with all those memberships. It requires a day’s preparation to make it to one event- forget trying multiple events in a day. And while that much socialization would be exhausting for me now, I still long to be around people who understand me. Now don’t misunderstand. I have wonderful family and friends. My husband handled my illness far better than I could have asked. My Mom still texts me first thing every morning to see how I slept and talks to me at night to hear about my day. I have great physical support- but I can always use more.
The first months of being sick/ disabled were the worst. I was too ashamed to reach out to friends who knew me pre-illness and too scared to reach out to new people. I thought the idea of joining online support groups was ridiculous. What kind of loser needs people she’s never met to help her navigate life? This kind of loser. Me. As I started looking for groups and forums for those living with chronic illness, I found people who could understand. I found kindness and compassion and empathy. I found people who didn’t think I was weird because I was too tired to both shower before an event and then actually attend that event. I discovered others who were living with the shame of not being able to keep their house as organized as they’d like. I even found friends who understood how it felt to decide not to have children- yet be simultaneously heartbroken by that decision.
Without my communities of online friends, I would have never discovered blogging or felt compelled to begin my own chronic illness communities both online and in person. I credit those friends who pulled me through the beginning of this awfulness with all that Crazy, Chronic Life has become. But, it occurs to me that I’ve yet to make an exhaustive list of all the ways you can participate in the CCL community. If there’s a community that interests you, join us. I promise; we’ll be glad to have you.

Crazy, Chronic Life- FB page– This is the main Facebook page where all new blogs and CCL updates post first. I also use this page for live videos and polls.

Facebook Crazy, Chronic Life Support Group– This group is for those with chronic illness- or their caregivers who may seek to understand more. Join us contests, silliness, and all the support you can handle.

Taylor County Public Library- Chronic Illness Support Group– If you live in or near Campbellsville, Kentucky, come join the in person support group and meet some of the (in my opinion) coolest people in Campbellsville!

Sorry for posting twice today. I’m trying to get all my “blog keeping” tasks caught up before I leave for Nashville.

Peace, love, and health, friends.

A Diagnosis Matters.

While I certainly have plenty of experience in searching for a diagnosis, I’m not really writing this for myself- but rather, my friends who are undiagnosed and searching. Big hugs and love to all my chronic illness friends who are fighting this battle. I have your back, and I’m cheering for you.

Years ago, before my own chronic illness symptoms became as obvious, I accompanied a family member for a medical test. While I was waiting for my family member’s discharge, I started chatting to a nurse. She told me a story about a patient who had come in earlier in the week with vague symptoms. The doctor had ordered an upper endoscopy which came back showing no obvious problems. The nurse laughed sardonically as she told me how the patient burst into tears of frustration at the report. The nurse couldn’t fathom how a person could feel anything besides relief at getting a good report- and seemed convinced the patient wanted to be sick.
Even at that point in my life, when I had far less experience with being sick, this conversation grated on my nerves. I imagined the patient coming in- knowing something was wrong with his/her body- desperate for answers. I could understand the patient’s frustration in not getting the answers needed. The nurse, on the other hand, couldn’t understand why the patient was so upset.
Years later, now that I’ve battled my own set of vague and sometimes transient symptoms, I can feel that patient’s frustration so deeply. I’ve recently had an onset of neurological symptoms. My legs tingle- sometimes they just don’t work when I tell them to (which makes using stairs sometimes laughable and other times downright dangerous). My neurologist noted hyper reflexes on one side but diminished reflexes on the other. My bladder is a jerk. I’m basically a slow-walking neurological mess. And. . . there’s currently no obvious cause for my problems.
I’ve been through this before. It took years to find out I had EDS. I know that eventually I will find the right doctor who will order the right test to get me the right diagnosis. However, the truth is, I’ve fought this battle so many times that I’m growing weary of the fight. I catch myself cringing when my phone rings (and finding excuses not to answer), because it will be another doctor’s office, another appointment, another test. More needles. More side effects. More bills. (Did I mention MORE bills?)
So, as a person who has fought the fight for diagnosis for years- and will likely continue to fight for answers for the rest of my life- I want to make something exceedingly clear. It is not wrong or selfish to want answers. Just because someone wants to know the name of the illness plaguing them does not mean that person wants to be sick. They’re already sick and want answers.
If you’re still not convinced, think of it like this. Let’s imagine you’re standing around doing nothing- and completely out of no where someone punches you in the face. *BAM* You see stars. Your nose is bleeding. Holy moly, your tooth is loose. The assailant had quite an arm. By the time you come to your senses, the person who punched you is gone. You look around and have no clue who hit you. You cannot put a face or a name with what caused your pain. Are you selfish for wanting answers? No. Does searching for the person who punched you mean that you wanted to be punched? Of course not. No one would think you were strange or out of line for if you sought out multiple sources (ie. bystanders) to find out how you were injured.
Seeking diagnosis is very much the same. You’re suddenly sick, and you don’t know why. You want a name, a cause, SOMETHING to help you understand what is happening. That isn’t wrong. It’s human nature to seek a cause when an effect has occurred.
Friends who are searching for a diagnosis, I understand your struggle, and I hope only the best for you. Friends who have navigated this course successfully, I’m proud of you for fighting through this. Friends who are trying to understand why any of this matters, I realize that battles we haven’t fought ourselves are hard to understand, and I appreciate your kindness regardless. Please be patient with us- I assure you, we’re all fighting to be patient as we seek answers.
Peace, love, and health always.

I’m not always Pollyanna.

So, I’m not always Pollyanna. Don’t get me wrong. I try to look on the bright side. I remind myself that this exact moment of emotions and self-pity won’t last forever. Joe and I are known for being the people who have figured out how to make the best out of bad situations. That’s who we are- and that’s what we do. But, some days it doesn’t happen.
Some days I’ve been awake most of the night with aching joints and tingling arms and legs. I’ve slept fitfully at best. New neurological issues haunt my body- some which I’m not comfortable enough to even write about yet. I feel like I am begging for help that isn’t coming, and I’ve been down this road enough times to know that it’s a long one. Today is a day where I’m aware that even if my diet is perfect and I combat all my inflammation issues, my body will still be affected by this disorder at the most basic cellular level. I know there aren’t enough trips to the gym to enable me to enjoy Disney World in a couple of months without the aid of a scooter. I even realize that holding my body together for a week of vacation is going to require an effort of epic proportions.
I’m not trying to be negative. I don’t write this for pity. I don’t want anyone to feel like they have to encourage me to keep going on (though I appreciate all those who have done that in the past). I won’t quit. I know this feeling won’t last forever. However, today I’m sad. I’m so pitiful, in fact, that Joe is cooking lunch and bought me surprises at Walmart (a Frozen toy, Saved by the Bell t-shirt, and chapstick- I have simple taste, friends.).
My point is- it’s okay to be sad sometimes. You can’t live in the valley of despair forever. I’m not suggesting anyone live a life of self-pity, because that requires more energy than any of us possess. However, give yourself permission to mourn your losses sometimes. Tomorrow, I start with a new physical therapist. Wednesday, I get a haircut. Friday, Joe and I have a date night scheduled. This week won’t be a waste- I won’t let it. But, today, I’m tired. I’m a little sad. I need girly movies and puppy cuddles.
The Braves come on in less than hour. The lunch Joe is cooking smells highly edible. Today won’t be the worst one ever, but it’s a bit more complicated than most. (Even this blog is short, because my fingers refuse to do what my brain is telling them. What the heck, body?) Occasionally, I feel like a fraud, because I encourage everyone to try to make the best of living the chronic life- and, to be honest, occasionally, days like today happen. So, here I am. I’m being totally honest with you, and letting you know I’m drowning in self-pity today. I promise I’ll return to your regularly scheduled Crazy, Chronic programming soon. But, today stinks, and sometimes making the best of it means admitting that and having the best sad, lazy day possible.
Peace, love, and health, friends.
Does anyone know if “Pollyanna” is available on Netflix or Amazon Prime? I need an outside, sunny disposition.

This one’s for the teachers who can no longer teach . . .

Back to school time is one of my favorite times of year. I love buying crayons and pencils far more cheaply than any other time. I enjoy the enthusiasm of a second-grade girl picking out the perfect backpack. (In my day, kid, we had Lisa Frank Trapper Keepers, and they were the bomb.com.) I appreciate a clean classroom that shows the tireless efforts of the janitorial staff to prepare the building for young learners. And, I’m borderline obsessed with classroom decorations. (Seriously, parents. If your child has a teacher that has decorated every inch of his/her room, please comment to the teacher on how amazing your child’s learning environment looks. Those decorations are time consuming and EXPENSIVE- and more than likely came out of the teacher’s personal funds.) I have loved this time of year since I was old enough to join my older brother for back to school shopping when we were kids.
Now, though, it’s different. I still love the energy and hopefulness of both teachers and students at the beginning of the year. I still enjoy hearing about first days of school. I’m thrilled that my social media is filled with teacher friends’ pictures of their classroom for this year or parents’ pictures of their little ones headed off for the first day. I even look forward to taking a super obnoxious “First Day of School” picture of my own absent-minded professor (and husband) when he heads back to the classroom. There are aspects of this time of year that make me smile, but the fact remains that this time of year hurts.
I am a teacher- or I was, at least. Mentally, my calendar still runs August to May rather than January to December. I still have nightmares where I’ve missed the first day of school or I have a class of 40 students who won’t listen to anything I say. But, if I’m being honest, I’m also haunted by a dream where I go back to work, and I’m a teacher again. In the dream I keep saying, “I never thought I’d be well enough to do this again.” Then, I wake up, and my shoulder is dislocated and my heart is racing, and I realize I’m still in the same body that disabled me more than four years ago when I taught my last class.
I’m not complaining, really. I’m certainly not trying to put a damper on anyone’s back to school enthusiasm. I’m simply saying to all those who feel especially vulnerable at back to school time, I feel you. I feel your tears. I feel your mourning of unrealized future plans and dreams. Most of all, I get it. I understand how it feels to simultaneously be grateful that you’re able to stay home and focus on your health- all while being enraged that your body has demanded that of you. I understand how it feels to want to hide from your former colleagues because of the shame of “not being able to hack it”- all while hoping they’ll tell you about their classroom experiences so you can live vicariously for a moment. I understand what it means to hurt this time of year- even though it’s one of your favorite times of year.
I don’t have advice on how to handle this hurt, because I’m in the middle of it. I know that it gets better with time- I haven’t openly wept in the back-to-school section of Wal-Mart this year, so that’s progress. I don’t know when or how broken hearts heal. I imagine this will always hurt a little- especially at this time of year. So, while I continue to try ‘to bloom where I’m planted,’ I’ll be the first to admit that where I’m currently planted hurts, but I’m not the only person living that reality. So, former teachers, school employees, and students who can’t return to class for whatever reason this year, I feel your pain, and I’m here. Maybe if we keep our heads down and watch a lot of movies on Lifetime, August will pass quickly and painlessly.
By the way, my absent-minded professor has requested to wear a Spiderman costume for his first day of classes, because he saw it in a Wal-Mart back-to-school commercial. (Goodness, this guy . . .)
Peace, love, and health.