Author Archives: tiffanyrearly

About tiffanyrearly

I am a 32 year old former middle school teacher who likes to blog while sitting on the back porch. :-) I advocate for the disabled and chronically ill while blogging about my experiences living with Ehlers Danlos Syndrome.

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.

Advertisements

Nashville, Nerves, and Not- Football Season

“Few things thrill me as much as a doctor’s appointment . . .” -said no one ever. There’s never been anyone in all of time who enjoyed discussing ailments with anyone- let alone a stranger. I have an appointment at Vanderbilt next week, and I’m exactly 0% excited. But . . . we are also going to Nashville for this appointment, and I really like Nashville.
You see, Joe and I (okay, mostly Joe- he’s the unofficial commissioner of fun in our relationship) try really hard to make all things painful less torturous. We play music while we cook, listen to audio books while we drive, and dance while we fold laundry. (Our house is pretty much a talentless variety show.) Sometimes, though, trying to make the best of things gets a little muddled.

This doctor’s appointment is a big deal to me. Now, it’s not a matter of life and death. I’ll be fine regardless of the outcome. However, I need this doctor to listen to me. I need her to understand that my complaints- while not life threatening- are greatly affecting my quality of life. You see, the current state of my health (and I know I’ve discussed this more than enough with all of you, so bear with me one last time) is basically a neurologic mess. I’ll spare you a repeat of the details, but I need someone to help me. The frustrating thing is that all of this was going on a year ago when I saw my neurologist, and she opted to “wait and see” what happened next. I’m not being critical of my doctor. When you deal with chronically ill patients, I’m sure you learn that you can’t run full force at every complaint. To be fair, a lot of my symptoms wax and wane over time. However, this year, I can’t handle another year of “wait and see”- or at least I really don’t want to try.

So, I’m nervous about this appointment. To be honest, it makes me nauseous to even think about it. (This is also the doctor who orders the tests to check my tiny carotid aneurysm- in case I didn’t have enough to worry about.) But, we are going to Nashville on Sunday, and the appointment isn’t until Wednesday.

Joe and I have decided to turn this trip into an end of summer mini-vacation since we also love Nashville. While I know that I have nerve wracking things ahead of me, I can’t focus on that until it’s time. So, I’m striking a balance. I will be making notes and having hypothetical conversations in my head to prepare for my appointment. But I will also be visiting a friend (and her beautiful baby girl!), having one last summer adventure with Joe, and soaking up the last few days of my favorite time of the year- also known as “not football season.”
This life isn’t perfect or easy, but it’s mine- and I’ll make the best of it.
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.

Sweet Summertime.

One of the best compliments I ever receive is when someone notices how hard I try to enjoy life in spite of illness. I’ll be honest- it’s not always easy, and I’m so touched that others notice my effort. The past two months have felt like a whirlwind of travel, packing, unpacking, laundry, and a few doctor’s appointments. I’m tired- and to be honest, even a healthy person would be tired given my recent schedule, but I did it.

Just to recap- Joe and I went to Shelby, NC where he presented a paper. Shelby, NC is a rather unexciting little town with little worth mentioning aside from a great wing place. (We may have eaten there twice. Don’t judge.)

(Riding through the mountains in North Carolina)

(My favorite professor delivering his research)

We were home 6 days before we left again- this time for Joe to present a paper in Atlanta, GA. I love Atlanta. I would move in the Georgia Aquarium if they’d have me. But, I wanted to go to baseball games at night (Go Braves!), so I had to sacrifice day time sightseeing for nighttime fun. Worth it.

(The baseball obsession is real)

And, then- Disney! Disney is my most favorite place ever. Granted, this world has a whole lot of places I haven’t seen yet, but for now, Disney World tops the list.

(I know. Y’all have seen enough pictures from Disney, but I can’t stop myself.)

And, now, well, after my annual post- Disney illness subsided (My body has never met a germ it didn’t want to try.), I realize that summer is more than half over and I mostly need a nap. Would I change any of it? No. (Although, I probably should have eaten fewer chicken wings in Shelby, hotdogs in Atlanta, and Mickey shaped junk food in Disney!).

I’m back now. I’m ready to dive back into blogging and vlogging, and I always want to hear from all of you. The first part of my summer was about getting out and living my life. The second part is about encouraging others to do the same. Even as I’m writing this, I’m riding to Louisville to have a date night with Joe. It never ends, and I’m grateful. Big love to each of you.

Peace, love, and health.

It’s Disney time, baby!

I originally planned to do this as a video blog (vlog?), but I looked in the mirror and realized my current look is more appropriate for blogging. Joe and I are at the pre-vacation point where we’re wearing clothes that don’t fit and eating food no one wants so we don’t have to do more laundry or grocery shopping. I’ve looked a little pitiful for a few days, and I’m totally okay with that.

It’s finally time! This time tomorrow, I will be THE Happiest Place on Earth. Joe and I work and save a prepare for this all year long, and we are so excited to finally enjoy our time together in WDW.

A few quick thoughts before we go- Joe and I are in the talking stages of writing a handbook for visiting Disney with chronic illness/ disability. So much of my original purpose in starting this blog was to show others that it’s possible to have fun and experience fulfilling relationships in spite of chronic illness. I won’t lie- it’s hard! I’ve been dealing with a spinal fluid leak after a lumbar puncture last week. (Im much better now, by the way, but I’ve been stuck lying flat for a week.) A lot of the packing (and Joe’s birthday celebration) has been done between naps and with plenty of breaks. It’s daunting to know that Im counting on my very unpredictable body to cooperate- especially when we have spent a year saving up to enjoy the coming week. I know the struggle all too well. At the same time, I want to encourage others to live their lives and take chances. It might be hard- but it will likely be worth it. Ideally, I’d love to help my friends with disabilities be able to experience Disney with their families (if that’s something they desire).

So, for the next 8 days, stop by the blog or my FB page ( @CrazyChronicLife ) to see video and pictures from Disney! Big love to all of you, and I’ll see you at the Mouse House.

Peace, love, and health!

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.