Get Ready to Fight.

Years ago I sat in a doctor’s office, newly diagnosed with POTS, and the doctor suggested I get a hobby. He told me I would likely be sick for the rest of my life and should find something relaxing that I enjoy to keep me from becoming depressed. I accepted this and moved forward. Some time later when I was diagnosed with EDS, a doctor noticed the cross necklace around my neck and suggested that praying would bring me some comfort. Neither of those doctors were wrong. Blogging has given me an outlet to share my story and find friends who understand. My faith has certainly encouraged me and allowed me to feel more whole in spite of illness. However, both of those statements, said to me as an attempt to encourage, felt like I had no choice but to accept being sick.

For years, I worked to accept being sick- to my own detriment. I ate what I wanted, because no amount of kale would heal me. I gave up on exercise, because planking wouldn’t fix my broken collagen. I prayed- but not really for myself. I had no hope of feeling better and didn’t expect that God would change my body at a cellular level. I was resigned to live this way.

Then, I found out I have a BRCA2 gene mutation. (Here’s and old post where I explain more about BRCA2- https://crazychroniclife.wordpress.com/2018/12/27/fricka-fracka-what-the-heck-is-brca/) Statistically, I have an 86% chance of developing breast cancer between the ages of 30-50. EIGHTY-SIX PERCENT. I can’t even explain how much that statistic scares me. The BRCA world, however, is a little different than the chronic illness world. Doctors immediately began telling me what I could do to have proper surveillance to detect any possible cancer growth as quickly as possible. When you’re diagnosed with BRCA, your world becomes all about avoiding the worst-case scenario. It’s a world of trying to prevent- not cope.

This mind set of trying to prevent the worst case scenario rather than wait for it and cope has changed my life. I am having twice yearly check ups, and I have challenged myself to live the healthiest lifestyle I can manage. Realizing the chance that I could eventually have to fight cancer, I have worked to get my body in the best possible shape for a fight. I’m, of course, very hopeful that cancer will never be my reality. I am doing everything I can to limit sugars and soy in my diet- things that are known for encouraging tumor growth. But, more importantly, I’m choosing to do my best- every single day. I go on gym dates with Joe most weekdays. I meal prep so that we always have healthy choices available. I stopped buying chips and cookies. If I have a junk food craving, I have to make it myself- which is typically more trouble than it’s worth.

If I could change anything about my first years with chronic illness, I would change the mind set of resignation. Of course, it was important to rest and listen to my body. However, it was just as important that I get in “fighting shape” to fight against those diagnosed illnesses. Do I still have POTS and EDS? Of course. However, I’m getting stronger. My outlook is brighter. I am far more capable of dealing with symptoms than I was years ago when I was resigned to them.

I wish when I was first received chronic diagnoses, that my doctors would have suggested I get in “fighting shape.” I wish when we had the conversation about the risks of aneurysms and ruptures we had also talked about the importance of living a healthy lifestyle. I wish that the discussion of joint dislocations was countered by a discussion about joint strengthening. I am not saying my doctors got it wrong. If anything, I’m admitting that I didn’t take my health as seriously as I should have. However, dear friend, I am saying that regardless of your diagnosis (or even lack of diagnosis) it’s important to keep your body in fighting shape. If you don’t know where to start, that’s okay. Start small. Cut out one soft drink a day. Commit to doing exercises while lying in bed. Use a pedal exerciser when you’re watching tv. Do something for YOU. I promise you’re worth it. Your health is worth it. And the fight, whatever your fight is, is going to demand it.

Peace, love, and health, friends.

A Pep Talk to Myself- and anyone else that needs it

Today, I need a pep talk. I’m tired and mostly unmotivated about getting things done that need to be accomplished. So, I’m writing myself a big-league pep talk, and you’re welcome to use it if you need to do so. I will warn you that I tend to be harder on myself than I would ever be on any of you, so take that into consideration and modify as needed.

You’re TIRED?! You’re tired? Well, sweetheart, let’s take a moment to think about why you’re feeling that way. Could it be because you’ve stayed up late every night mindlessly scrolling Pinterest instead of going to sleep at a decent hour? Could it be that you’ve allowed bits of refined sugar back into your diet here are there when you know it makes you feel awful? Could it be that you’ve lost sight of the fact that every day is a day to push to be better?

Yes. It’s probably all of those things. I get it. It feels great to lie in bed until 10 AM. Its fun to watch Dr. Phil for two hours while you drink coffee- instead of water which you actually need. But that’s not what you do. You stay on a schedule. You rest if you need to, but you don’t fail to start the day. You eat healthy food that fuels your body- not processed garbage because it feels good in that moment. You gave up those foods, and you’re glad- remember?

There’s no finish line to being the best you can be. There’s not a moment to let up. A number on a scale or any other goal achieved will never mean you’ve arrived. You were “good enough” when you started, but, honey, you’ve decided to be your best. Do you remember all you’ve been through? Do you remember the pain of missing out on life and not knowing where to turn? Do you remember feeling so lost and hopeless that you believed that every day would be that hard forever?

You’ve walked through flames- and you’ve smiled at the demons. You don’t get to lie down and wallow with Dr. Phil just because being your best feels hard. Tomorrow, you’re going back to your schedule. Heck, tonight, you’ll put your phone down and go to sleep at a decent time (or try). You’ll go to the gym. You’ll work on your next book’s outline. You WILL do these things, because doing your best is an everyday gig. You have goals- HUGE goals- and it’s time to get back to work.

And, girl, if you don’t do it- I’m sending you back down to the minor leagues.

Peace, love, and health, friends.

Didn’t meet my Disney goals- and that’s okay.

Hey, friends. I’ve missed you all! I’ve been in a season of life that was very focused on becoming a better me- because the best version of myself is who I want creating content for this page. Let me start at the beginning, because I tend to jump to the conclusion and hope everyone can read my mind to fill in blanks.

I’m a bit of a perfectionist. It’s such a part of my personality that at times it can be a deterrent. You see, if I can’t do something perfectly (or my version of perfect which is often skewed from the start), then I would prefer not to do it at all. I fell so deeply into this thought trap that I lost sight of myself for a bit. In my mind, if I couldn’t manage all my symptoms with healthy eating and exercise- why even give it a shot? If my body was disordered at the most basic level (ie. DNA), then how on earth was I supposed to create order? In a time of ugly-ish thinking, all I could think is- “If doing everything right isn’t going to make me my old self, then why bother?” I gained weight. My pain surged to new levels. I was on more medication than ever, and I accepted that as my life.

Fortunately, I don’t stay in these places for long. With the help of my support system, some really fabulous books (ask me for book recommendations- I got you), and a lot of introspection, I realized that regardless of my inabilities, I was able to be better. You see, being better than my current self is always attainable. I don’t mean that I should always feel guilty about where I am currently. Not at all. But, I am always capable of becoming a bit better- maybe physically, but always mentally, emotionally, and spiritually.

When I first started, I had two goals- 1. I wanted to lose 20 pounds before my hysterectomy- which was recommended because of my BRCA2 status. 2. I wanted to be able to walk Disney World- instead of using a scooter. Let me side bar for a minute to explain something. I do not have an ableist mindset. I don’t believe that walking rather than using a wheelchair is “better” or “improvement.” Using the mobility aid that makes the world accessible to you is AWESOME. I have no shame AT ALL about the time I’ve spent using Snookie (the wheelchair) or any other mobility assistance device. However, I experienced Disney World via foot during my honeymoon, and I want to do that again. It’s not an intentional bias against mobility aids, but at the same time, I don’t apologize for wanting to have that same experience now. I want to be able to hold my husband’s hand as we experience the World Showcase at EPCOT. I want to carry my Minnie Mouse backpack ON MY DANG BACK- instead of the basket of a scooter.

So, I did my best. I ate SO healthy. I gave up grains, and refined sugar, and dairy, and soy. Pretty much I gave up all the things that taste delicious- since December 27 (because January 1 seemed like a super cliché day to begin something new). About two weeks into this change, my joint pain lessened enough that I could go to the gym and get some exercise. I began with a recumbent bike, then a treadmill. Now, I wish I could experience the world via elliptical, because that has become my exercise jam (It’s easier on your knees with similar calorie burn- trust me). So, now, it’s late May, and I’m so stinking proud of the strides I’ve made. I’m healthier. My mood is better. I’m probably nicer to my husband and dog. But, you know what? I didn’t meet either goal.

First, my high-risk specialist no longer recommends a hysterectomy. (Mostly because I won’t also have a mastectomy- because that’s freaking terrifying.) Not to mention, I only lost 19.5 pounds. I’m pretty sure that last half pound is hanging on to keep me humble. I will have to wait until I’m actually decomposing to lose that final pound, and I have accepted that as my fate. And, my second goal of walking Disney World? Just not going to happen- at least not this year. I can handle 40 minutes on an elliptical- but that’s only 5,000 steps on a low impact piece of equipment. Joe gets 20,000+ steps in Disney World, and my joints (and POTS inclined heart) just can’t hang with that sort of trek in the Mouse’s magical muggy heat for an entire week.

There was a moment of frustration- heck, there were several moments of pure aggravation- when I realized that I wasn’t going to achieve my goals. But, then, I think about what I gained. I am stronger than I have been in years. My joints are wonky at best- but they’re more stable than they were a year ago. Most importantly, I am growing (not in weight- I’m still working on that half pound that loves me like a fat kid loves cake). I am learning that my best is ever changing and evolving, and it’s a fun experiment to see where I go next. Most importantly, I’m not sitting around hoping things get better. Hope isn’t a legitimate growth strategy. I am doing something to make my quality of life as good as possible. I’ll be honest. I’m pretty happy about that.

So, I didn’t meet my goals. That’s okay. I am going into this Disney Palooza proud of myself. I’m treating myself to some dairy free ice cream, and I’m going to look over all the added refined sugar, because I’m living my best Disney life- which will include some mini corndogs at Casey’s Corner. (Unless it makes me sick- at which point I’ll be having all the vegetables and grilled chicken WDW has to offer.) Also, I may have more than a half pound to get rid of when I get home, because that Mouse likes to encourage treats- and this chick likes to eat them.

Peace, love, and health, friends.

** Don’t forget to follow the @CrazyChronicLife FaceBook page for Disney live videos, pics, and general commentaries from The World.

I’m sick, but I’m strong.

Hey, Crazy, Chronic friends! It’s already February- I seriously have no clue how we’re already into the second month of the year, and I’m still trying to remember to write the new year when I write the date. (Granted, I might still do that in August.)

January was a good month for me. My resolution for 2019 was to be more goal oriented, and it’s been fun to start taking steps toward meeting those goals. One goal is to lose 20 pounds before I move forward with a hysterectomy this summer. I’ve had this goal for a while, but I didn’t have a plan on how to get there. I’ve developed a plan, and I’m sticking to it- and I’m so darn proud of myself.

I’m identifying food intolerances.

I have been (imperfectly) Paleo since January 1. I’m learning that my body feels better when I eliminate certain foods. Without dairy, processed sugar, and grains in my diet, my pain levels are a little more controlled. Sometimes, friends, it’s HARD to go without foods I love. Now, I know for some people, food is just sustenance, and I am trying to develop a healthier relationship with it. However, for me, I comforted myself with unhealthy food when my pain was out of control, when I felt sad, or when I felt like I deserved a treat for doing something particularly difficult. Those little comforts were adding weight (and therefore pain) to my joints. I became suddenly very aware that I wasn’t comfortable being an advocate for the chronically ill when I was consciously making decisions that would make me feel worse in the long run. Does that mean I’ll never have pizza or chocolate cake again? Heck, no. It means that I am finding new ways to treat myself that aren’t self-sabotaging.

I’m getting stronger.

If you had asked me in early December, I would have told you there’s nothing at my local gym that I could do. The treadmill hurt my knees. The recumbent bike hurt my hips. No matter what I tried to do, something hurt. You know what? That’s okay. I’m going slow- embarrassingly slow at times. But, I’m learning that my body can adjust to hard things and get stronger. When I started using the treadmill/ elliptical, my knees were swollen and painful for the first two weeks. Normally, I would have quit- because I have enough joint injuries without adding another problem area. However, I decided to see what would happen if I rested, iced, taped, and KEPT GOING. You know what happened? One day I realized my knees hadn’t hurt my entire workout. My body has challenges and limitations. It’ll never run a marathon or competitively lift weights- but it CAN get stronger. I can’t begin to explain how proud I am to have discovered that. For the first time in my adult life, I walk into the gym not embarrassed by what I can’t do but proud of how hard I’m trying.

Here’s the thing. I’ve hesitated to share this journey with my blog community for a few reasons. First, I could fall off the wagon. A month from now I might read this blog and think, “Bless that wide-eyed child. She was so naively full of hope.” If that happens, well, I’ll have this blog as proof that I CAN do hard things. I can get back on the wagon. (I CAN even make a fairly tasty grain free dinner roll! Woot! Woot!) Second, there will be readers of this blog that won’t be happy for me. I understand that. I understand how much energy is required just to LIVE with chronic illness. I know how comforting food can be when everything else is miserable. I don’t blame anyone with chronic illness for their current state. Life is HARD- and life with chronic illness seems almost impossible. You CAN do hard things- but maybe the hard things for right now involve waking up and showering. I’m proud of you for that. Wherever you are on your journey through symptom management, be proud of yourself for doing the hard things. I’m cheering for you, and I’m so glad I have this community cheering for me too.

Peace, love, and health always.

#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.

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.