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.

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!

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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.

When People Say, “You Don’t Look Sick.”

Every person living with a seemingly invisible illness has lived this scenario. Maybe you’re speaking to a distant family member when it happens. Perhaps you run into a former classmate or friend from work. It could be the sweet lady who sits in front of you in church. Regardless, we’ve all been in those situations where someone says, “You don’t look sick.” It’s a double-edged sword of sorts. On the one hand, this person thinks they’re paying you a compliment. On the other, it only adds to the invalidation we often feel. So, let me make it clear to all those who aren’t living with chronic illness. I think I can safely speak on behalf of all those with invisible illnesses when I say- Please, for the love of all that is good and kind and understanding in this world, stop saying we don’t look sick. It just isn’t conveying the nicety that you’re trying to insinuate.

For instance, if I “look healthy,” there’s been some serious effort that has gone into that façade. I begin preparing to go into public hours before I go. I know there will be people who try to diagnose my current situation based on how I look that day. I save myself effort and aggravation if I try to look like everyone else. This has nothing to do with make up or wardrobe choice- it has everything to do with waking up in time for my medicine to start working before I go in public. It is about me achieving a manageable blood pressure and often using enough heat or ice to make my joints feel functional.

Let me try to explain. I look mostly healthy. Don’t get me wrong- I’m exceedingly aware of all the ways illness keeps me from measuring up to society’s standard of health. However, I look like every other thirty something for the most part. This means when I see doctors I often feel like I don’t meet the bar for what is “sick enough” for them. I typically feel that my smile or laugh or even pleasant disposition (let’s be honest, that comes and goes) inhibits me from getting the care I need. Quality of life is not easily quantified, so I often feel like it is being determined at face value rather than by my actual experience. It’s frustrating. So, when you tell me I “don’t look sick” you’re listing another problem that keeps me from receiving care- rather than giving me a compliment. I completely understand that isn’t your goal; however, I would be lying if I pretended that I perceive that phrase as some sort of compliment.

If I dig into that phrase a little deeper, I’m able to understand why it strikes me as hurtful so quickly. When we say that someone does not look sick, we are essentially telling that person he/she has no obvious disability. This means as my illness progresses, and I inevitably begin using a walker or wheelchair, I will start meeting society’s standard of looking sick. I won’t necessarily be any sicker than I am right now. However, as my mobility changes, I will meet the definition others expect me to fit to be “sick enough.”

Please, understand that I am not one to nitpick over semantics. If you say something to me with the best of intentions, I will do my best to perceive it as you intended. I am not trying to make anyone hyper-aware of their language. However, in this world where I believe all decent people are called to learn how to constantly be better and to make their language as inoffensive as possible, I want to challenge you to say something different. In all reality, it’s not necessary to comment on how anyone looks anyway. Try asking someone how things are going- and genuinely wait for a response. Maybe tell someone that you are glad to see them- rather than invalidating their illness, you are letting that person know you value your time with them. I feel like all of us are above commenting on someone’s physical appearance.

Oh yeah, and if you make a mistake and accidentally tell someone they “don’t look sick,” no worries. All you must do is add some empathy. Follow up with “but I understand that you really don’t feel well.” See? That’s all it takes. I promise- I will always appreciate your empathy and understanding.

Peace, love, and health, friends.

Self-Care Matters.

Hey, you guys! (Goonies reference- 5 points if you caught it) I’m currently blogging from my car- while parked at Sonic. I’m making a valiant effort not to order tater tots. My theory is if I order a really large drink (it’s roughly the length of my torso) they won’t judge me if I sit in their parking lot and work on blog stuff.

I hope all of you had a wonderful holiday season- I hope your Christmas was merry, your Hanukkah happy, and your New Year sparkly and bright. I’m essentially just coming to the surface after a post holiday health meltdown which included bronchitis, Flu A, and sinus/ ear infection. Y’all, this mess started the day after Christmas, and I finished my last antibiotic LAST NIGHT. So, yeah, February 1 feels like my New Year. January was the month of feeling like I’d been banished to Illness Island (which is neither exotic nor tropical).

So, since I’m experiencing a very belated New Year, I thought it might be a nice time to talk about resolutions. My resolution comes with a bit of a back story, and so bear with my digression.

I entered into 2018 feeling very “meh.” I wasn’t especially excited about anything. (Granted, I had the flu on Jan 1, so life wasn’t exactly full of adventure.) I didn’t have writing goals or advocacy goals. I didn’t even have personal goals. (Don’t get me wrong- I’ve had the goal of losing a few pounds for the last 15 years, but at this point it goes without saying- or, you know, actual effort.) Medical/ Health things that I had high hopes for didn’t work out- and brought the possibility of scary new diagnoses. I didn’t feel like I was coping as well as normal. I mean, normally, I eat junk and watch trash tv for a day, and after a day of wallowing I have an action plan. However, I couldn’t get there. I couldn’t set goals. To be honest, I was so devoid of my normal “Tiffany-sparkle” that I began to feel like a fraud for ever believing I was that person.

But with time and a lot of buffalo chicken wings (weird fact: since the flu, I don’t like chocolate, and I crave hot sauce!), I started to notice a recent pattern. Throughout the previous months, I had let a lot of little habits slide. You see, I felt tired, overwhelmed by Christmas craziness, and a little overextended. Instead of countering that by stepping back and not trying to do everything- I responded by giving up things that I enjoy.

Now, I’m not suggesting that we should always put pedicures and facials ahead of responsibilities, but I am suggesting that self-care is important. You see, I continued to meet the obligations I had to others, but I stopped everything else. I said I was too tired for the gym. I justified not writing by saying my brain was too foggy. I told myself that I hadn’t fixed my hair is weeks, because my shoulders hurt. All my excuses were true. However, at the heart of them, the truth was that I had stopped making time for myself.

I’m not proud of it- nor am I trying to be some tragic martyr. My failure had nothing to do with others’ demands of me- and everything to do with how I responded to them. I am still making an effort to help others- my resolution of self- care was never about selfishness. However, I’ve resolved to find time for myself every day. Personally, I’ve said that time can’t be used for napping, because I don’t necessarily find that restorative. I’m practicing Spanish daily (with very limited success thus far), fixing my hair occasionally, and today I began making time to write.

Being sick is a daily battle for so many of us. And, regardless, everyone has their own set of struggles. I want to encourage you to make some time for yourself. Learn a language; read a book; do something that takes your focus off the struggle for a few minutes.

Peace, love, and health.

Diagnosis: Christmas Brain

Y’all, it’s hit. I officially have a full-blown case of Christmas brain over here, and it’s not pretty. I’ll be honest, I’m making Clark Griswald look like a laid back guy in comparison. Here’s the thing- I thought I was prepared for Christmas. Two and half weeks ago, I would have told you I was right on pace to have everything finished early. Nope. Just nope.
In case you’re wondering what on earth “Christmas Brain” is, you’re friendly, neighborhood health blogger is here to give you a full symptom list. Please be aware that symptoms exist on a spectrum, and you may feel these symptoms to a greater or lesser degree than others with Christmas Brain. Also, I’m fairly certain that “Christmas Brain” can be experienced by a wide range of people- not limited to those who celebrate Christmas (See also, Hanukah Brain, Kwanzaa Brain, etc.).

“Famnesia”
Those presenting with Famnesia are likely to completely forget the friends and family closest to them regarding gift exchange. For example, one sufferer of “famnesia” has been known to wake up one morning and suddenly realize she’s married and her husband probably expects a Christmas gift. Famnesia may occur regarding one, several, or all friends and family. Sufferers typically have bouts of regaining memory- when their friends/family show up with a gift.

“Click-itis”
Others with Christmas brain may notice pain or discomfort in their “buying finger”- or the finger(s) used to click “Add to cart” on Amazon Prime. Click-itis often resolves when the sufferer finishes their holiday shopping; however, it is likely to resume when cases of Famnesia result in last minute gift giving needs.

Lack of Flying Candy Canes
Now, this particular symptom is often described using other (perhaps more colorful) wording. However, some sufferers have been known to say, “I do not give one Flying Candy Cane whether these gifts have bows on them or not.” When there is an overall lack of Flying Candy Canes, one may find themselves wearing yesterday’s socks, using an obscene amount of dry shampoo, and feeding one’s family from Papa John’s. (Because, at this point I don’t give one Flying Candy Cane about proper nutrition.)

Sugar/ Caffeine Cravings
Many sufferers of Christmas Brain notice they’re existing on little more than Christmas cookies and coffee (with frosted sugar cookie flavored creamer). When other symptoms hit their peak, sufferers will often self-medicate with more coffee, Christmas treats, and the occasional 5 gallon drum of popcorn. While these cravings offer little sustenance to help alleviate symptoms, sufferers are often incapable of and/ or unwilling to do anything other than indulge these cravings.

Impossible Expectations
Sufferers will often imagine themselves making homemade Christmas candy, assembling a 3-story gingerbread house, caroling with the neighborhood children, ending world hunger, and achieving world peace (and a puppy for everyone). These are illusions. The sufferer will do none of these things. He/she may babble incoherently for days regarding accomplishing these tasks. Caregivers should be aware that while the Christmas Brain sufferer is making plans to do these things, he/she will not make it around to them. Do not buy ingredients, scarves, or puppies in preparation.

This (quite tongue-in-cheek) list is not exhaustive, but it certainly covers a number of the symptoms felt by this exhausted elf. I love Christmas, and I am looking forward to spending time with the people I love most in this world. I also know (beyond a shadow of a doubt) that none of them expect the level of perfection that I tend to put on myself. However, the Christmas Brain struggle is real, and I’m secretly looking forward to December 26- the magical day when everything is half price, and I’m way too tired of shopping to care.

Merry Christmas, Happy Holidays, and Happy New Year, you Cotton-headed Ninny Muggins!

May our symptoms resolve by 2018.

Peace, love, and health.

 

Book Talks, WEGO, and Weekends- Oh My!

Good googly moogly, friends! This week has felt especially crazy. It wasn’t terribly busy by normal people’s standards, but for a sick chick it wa downright exhausting. 

The Book Talk

My local library invited me to talk a little about the book Joe and I wrote. It was such a fun experience. I realized that I’m a nervous wreck when I talk around new people now, but I also realized I can stay conscious in spite of prolonged tachycardia. That seems like a win. Most importantly, I met several new friends who plan to return for the chronic illness support group I’m leading at the library. I look forward to hearing their story and helping to encourage them along this crazy, chronic journey. 

WEGO Health Awards 

I found out a couple weeks ago that this blog was named a finalist for WEGO Health’s Best in Show: Blog award. I’m still so very overwhelmed and grateful that my blog was chosen. The award announcement was Wednesday, and we didn’t win- which is perfectly fine. I mean, of course I would have been thrilled if my blog was chosen as a winner. But, if you saw the other blogs I was up against, you would understand why I wasn’t devastated to lose. It was seriously an honor to have made it to the top 5.  Plus, I got this snazzy purple T-shirt, and I love a good shirt. 

Weekend

And, now my friends, I’m headed to Knoxville for more football time with my main guy. (I’m actually blogging on my phone while Joe drives.) I’m very much aware that my everything hurts (yes, all the parts- they hurt), and a full day of bleacher sitting is not going to help this situation. However, I’m equally aware that I love going places with Joe, and I don’t want to miss a single adventure. I’ll be honest- in my life, sometimes the bravest thing I do is going on an adventure when I’m not sure if I’m up to it. (It’s a measured risk, though. Joe has missed games before when I just wasn’t up to actually going.) 


Friends, I hope your weekend is great and filled with as much rest of adventure as you want. 

(Thanks for enduring my test run of blogging from my phone. 😬)

Peace, love, and health. 

💙

Sleep.

I’m really tired. I’m always tired- this is hardly a revelation. But, if I’m being entirely honest, I have the absolute worst sleep habits ever. I don’t apologize for my strange relationship with sleep, though, because I have done everything within my power to help the situation- to absolutely no avail.
Here’s where I get around to making a point. Please, (please, please, pretty please, with melty cheese on top) do not cast judgment on the sleep patterns of those with chronic pain. Occasionally, I hear my chronic illness/ pain friends commenting about how their family/ friends have told them they would feel better if they would sleep on a normal schedule. While I agree that would be super fabulous- are you actually kidding me? Do you truly believe anyone chooses to stay up all hours of the night? Of course not. When you don’t/ can’t sleep your mind becomes victim to all the “what ifs” of your condition, relationship, and general life. Who would choose to do that? No one.
Now, don’t get me wrong. I don’t think chronic pain patients are the only people who can’t sleep. I know mental illness and hormonal changes affect sleep patterns. I’ve heard that my parents of newborn friends are rather sleep deprived as well. Joe has sleep apnea, and sleeps with a CPAP. It’s a sleep disorder. That’s another legitimate concern. I’m truly not trying to act like I’m the only person with a sleep concern up in here. (Although, Joe sleeps like a sweet angel baby once he dons that CPAP mask- as if there’s never been a sin to enter his blessed life, and I’m a little jealous.) I’m sorry. I really am. I feel your struggle, and I’m not trying to detract from it.
But, seriously. To all the people who feel I- or my other chronic illness/ pain friends- should just go to bed at a reasonable hour, please keep this in mind:
When I go to bed at night, I am quite literally putting myself into a device of serious discomfort. If I lie on my left side, I have to worry about my left shoulder dislocating. More specifically, I know my left shoulder will dislocate if I don’t move to another position quickly enough. If I lie on my right side, I’m lying on the hip that dislocates. Even if it doesn’t dislocate- it hurts. It really hurts. If I lie on my back, I lose feeling in my arms and legs- which makes my 37 nightly restroom trips almost impossible. (Seriously, you try walking on numb legs.) I don’t even try lying on my stomach, because my back spasms to the point that I literally can’t move to sit up. (Again, seriously inconvenient for the whole 37 restroom trips situation.)
I am a human rotisserie. I spend my nights spinning in place- hoping I will find a place that is comfortable enough to doze.
So, please. If you have opinions about what time sick people should go to sleep, keep them to yourself. It’s not easy. I assure you- we have tried every supplement, sleep aid, magic ointment, and tea. We are trying. We are combating pain, adrenaline surges, and the general fear of the unknown. It’s not easy, and I assure you- your advice about going to bed at 9 or turning off devices at 6 do little, if anything, to help. Please, give us some grace to figure all this out. It isn’t easy to live like this during the waking hours, and it when it’s dark, it gets even harder.
Chronic illness/ pain friends, please keep in mind that not everyone keeps our strange hours. I’ve found solace in online support groups during the wee hours of the morning when it’s impossible for my husband to be awake. I’ve had to learn that it’s okay if Joe is resting well during the hours that I’m trying (without success) to sleep. Joe has had to learn that it’s okay to let me sleep well past the hour that functional adults typically sleep. If you are living in a relationship that is juggling chronic illness/ pain, you have to learn to be patient while the other one sleeps. There are typically 6-8 hours of the day that one of us is awake and the other is not- just because our bodies run on opposite schedules. We are often quirky ships in the night. That is not only okay- it’s part of the balance of this life.
While we’re being very honest here, I’d like to also mention that my dog wakes me up for a drink of water (in which she must actually be walked to her bowl because she’s scared of the dark) at least three times a night, and Joe is a blanket hog. Those are very real situations in which the advice of healthy people is always appreciated. I’m considering making both of them sleep in the bath tub.
Peace, love, and health, friends.