Tag Archives: ehlers danlos syndrome

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.

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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.

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.

New Workout Plan- Getting Over Myself

Friends, I’m going to be entirely honest with you. Sometimes my biggest obstacle in living with chronic illness is me. I stand in my own way sometimes, and I’m trying to learn how to stop that. I’m trying to learn to get over myself- my ego, my plans, my wishes- and enjoy life as it is.
Getting over myself at the gym.
Today, I was at the gym (it’s not official unless I tell someone on social media, am I right?), and I had one of those moments. You know, those moments when you’re completely aware that you’re struggling and no one else is. There was a young woman in the gym who based on my observation must be training to be the next Ninja Warrior or planning to fight dragons. She lifted weights, jumped with said weights, hopped like a frog, leaned, and grunted. It was an impressive sight. Meanwhile, I was chugging along on the treadmill at a snail’s pace. Was she doing her best? Obviously. Was I? Yes. That should be the end of the standard for success, but it’s not for me. You see, I kept thinking about how embarrassing it was to not be able to do anything but walk on the treadmill. I played out scenarios in my head where someone asked why I wasn’t doing more. None of those things happened. The others at the gym did their thing (including Super Woman doing her ninja training), and I did mine. I had to repeatedly remind myself that the judgment I was feeling was all imaginary. Everyone has a different best effort, and that’s okay. I know that. It’s just easy to forget when it seems like everyone is way more impressive than I am.
Getting over myself in my marriage.
You may have noticed, but I tend to take things personally. I swear, Joe could say, “It’s a beautiful day outside,” and my insecurities would immediately lead me to believe he’s trying to hint that he wants to be outside away from me. I’m working on it; I know this is a weird character flaw, but it’s part of me. So . . . sometimes, I have exactly zero patience with Joe’s complaints. I get it. I’m being a jerk. Don’t worry- I’m self-aware. You see, Joe has aches and pains as well. This shouldn’t be a surprise to me, but sometimes it is. In my own struggle with chronic pain, I sometimes forget that non-chronic illness folks (muggles, as I like to call them) have their own struggles.

At my worst, I’m almost offended that Joe has the audacity to tell me he hurts. I’m irritated when he tells me (to be fair, he’s telling me for the zillionth time- sorry, snark attack) that his shoulder hurts from an old weight lifting injury or that he has a headache. Don’t get me wrong. I love my husband. I have no desire for him to ever hurt or be uncomfortable. If I had the ability to take all his pain on myself I would- but I would probably act like an obnoxious martyr in the process. Being sick puts a strain on any relationship. Being perpetually sick basically gives your marriage/ relationship an eternal toothache. It’s not easy. As much as I love my husband and never want him to be in pain (misery does not love company- I have no idea what kind of sadist came up with that idea), I’m sometimes offended that he is so brash as to tell me about his “muggle maladies.” I feel as though he is disregarding my struggle if he tells me his shoulder hurts. I feel like I’m being minimized if he feels bad on a day when I’m also struggling. Again, I know I’m wrong, and I’m trying to grow. However, we sometimes show our ugliest self to those we love the most. (If you don’t believe me, think about how we all acted to our parents when we were teens.)
Getting over myself online.
As a person who spends a lot of time isolated because of chronic illness, roughly 70% of my life occurs through social media. I’m not ashamed by that, because my support groups and online friends have helped me find strength for this fight, and I’m very grateful for their support. However, there’s a tendency in online forums to want to be sickest. I feel like I have slayed this particular dragon to some extent, but it seems worth mentioning. Often, as people with chronic illness, we go to social media forums seeking understanding. I would venture to say that no one in an online support group got there while thinking, “I have all the understanding and support I need in my life.” Everyone there wants understanding. However, sometimes in the quest for understanding, we can get a little competitive. In our desire to have others understand why we struggle, we sometimes try to eclipse each other. I remind myself frequently that while it’s great to empathize with others, there’s no need to share my personal experience all the time. Some friends just want to be heard, and that’s valid as well.
Ultimately, I’m a work in progress. I have worked through some of the emotions of being chronically ill, but there are new feelings and mental dragons to slay every day. While my own physical workout plan isn’t exactly impressive, I’m adding the mental feat of getting over myself to the list. It’s not easy- and some days it feels almost impossible- but my health, my relationships, and my happiness are worth it.
(I’m stopping here, because the All-Star game is coming on- Go Braves!)
What about you? Are there areas where you struggle to get over yourself? It’d make me feel way better to know that I’m not the only one.
Peace, love, and health.

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.