Category Archives: POTS

Birthday, Anniversary, and U2- Oh my!

Who am I? Where am I? Does anyone know what day of the week it is?

Seriously, y’all, we’ve had way too many holidays in the Early household. First, there was Joe’s birthday. He doesn’t ask for much- just a small party with his parents, a day in Louisville for the two of us, and a small party with close friends. Dude wanted 3 celebrations. Now, I can’t judge. I declare the entire month of September as the “Festival of a Tiffany,” so I can’t really begrudge his three celebrations. But . . . by the final celebration, I was sticking potato chips in the dishwasher. Because, when I’m tired that seems like a totally logical place to store chips.

Now, if you’d told me six years ago when Joe and I chose a wedding date that my body would eventually require a couple weeks to recuperate from Joe’s birthday, then I wouldn’t have had the wedding eight days after. But, it’s not legally possible to change my marriage date, so the next weekend was devoted to our anniversary- which happened to involve a U2 concert.

Yikes. Here’s the thing- I love music but, sort of, hate concerts. But, you guys! It was U2! That’s basically a check on everyone’s bucket list, so I had to go. The problem? I was still in recovery mode from Joe’s birthday palooza. Literally, the day before the U2 concert, I was in the recliner all day with insane chest pain. (Note- I’m not being an idiot and refusing to get a medical emergency checked. My chest pain comes from EDS/ POTS, and I have a decent understanding of its source. Over the last six years, I’ve learned this weird body better than I ever thought possible.) There were several points that day when Joe offered to sell our concert tickets on Facebook. But, it was our anniversary trip. I could have cancelled. Perhaps it would have been wise to cancel.

But, to be entirely honest, I’ve lost enough to illness. My marriage has lost enough to illness. If there is a possible way for Joe and I to do something (within reason, of course), then we’re going to do it. Friends, here’s the truth. I didn’t feel great. The concert was outside. U2 came on a couple hours later than expected. It was hot. Joe and I were both tired (him from pushing my wheelchair in 95 degree weather and me from this new phase of never ending chest pain), but we did it. We saw U2! I’ll be honest; if you watch Bono, and don’t get a little emotional at some point- you’re made of steel. I was already a U2 fan (albeit not a superfan), but I have so much more respect for that group and all they stand for. Fan girl shout out- One Republic opened for U2, and they were the bomb.com!

But . . . you know what? The weekend wasn’t over. After the concert there was still the matter of our anniversary. Fortunately, Joe and I decided to forgo the whole gift giving/ fancy dinner thing and instead spend a couple nights in Louisville. That meant I got two nights of 10+ hours sleep (Why do I always sleep better in a hotel? I refuse to admit that it might be the lack of the four-legged bed hog named Zoey that sleeps between Joe and I.) Obviously, when we made our plan, we didn’t know that I was going to be very much on the struggle bus. But, I was so grateful for those two nights of rest.

Here’s my point. Being chronically ill complicates every aspect of life. My marriage is permanently marked by the stain of illness. Joe asks how I’m feeling/ doing every single day- because my health is unfortunately a constant theme. However, Joe and I have made a commitment to having all the fun we can in our time together. Sometimes, that means taking a chance on a concert when I feel like dirt. Other times that means going honky tonking in Nashville the night before a serious doctor’s appointment at Vanderbilt. Friends, I’m far from a relationship/ general life expert, but I still have advice. Take every chance for fun. Put yourself in situations that might be hard but will also be fabulous. Obviously, make sure you’re with someone who will understand if you have to bail, but take the chance that the entire experience could be wonderful.

While I’m giving advice- here’s a little more. I used Snookie (the wheelchair) in order to enjoy the concert. That wasn’t in the original plan, but she became necessary. Once we realized that I was feeling rough on Thursday, we called the venue to see if disabled seating was available. This required us to drive to Louisville a little early in order to swap our tickets. Switching to accessible seating also meant we were on Club Level, so I could go inside and cool off under air conditioning as needed. Also, by taking Snookie to the concert on Friday, I saved what little energy I had available in order to enjoy Saturday/ Sunday in Louisville.

My memories from the U2 concert? Priceless. I wheelchair danced like an idiot. I sang along loudly and off-key with Joe. (We sort of specialize in both loud and off-key singing.) My weekend memories with my husband are just as special. This life is rarely simple, but I am so glad that Joe and I have made enjoying each other a priority. My challenge for each of you is that you take a risk in order to enjoy time with someone special to you. Maybe that’s going on a vacation to a whole new place (if so, I want to hear all about it!) or maybe that’s staying up late to watch a movie that will make you both laugh until your sides hurt. Do what works for you, but take a chance on something fun with someone who matters (family, friends, significant other).

By the way, we’ve already bought tickets for a Bruno Mars concert in Louisville this September. (Thank goodness, the Yum! Center is indoors.) The fun and insanity continue. Live it up, friends.

Peace, love, and health.

I’m Pretty Sure You Want This Book.

This (link at the bottom) is my book. Okay, technically, it’s Joe’s book too, because he did a lot of work on it. But since I’m the person with the chronic illness and this is a book about chronic illness- well, I’m a little emotionally attached. Just in case you’re thinking you don’t need this book or don’t especially want it, humor me while I make my case.

So, here are the “Crazy, Chronic Reasons Why You (might) Want to Read This Book.”

  1. It’s a beautiful love story. Okay, it’s not exactly a beautiful love story. As a matter of fact, I mention bodily functions that are neither beautiful nor lovely a couple times. However, Joe and I wrote this together. He literally saw my desire to write a book and not only encouraged it- he did a lot of the work. We talked through every chapter together before I wrote it. He physically typed a lot of the book, because my crazy, dislocating hands wouldn’t allow me. We have called ourselves #TeamEarly from the beginning, and this collaboration showcases exactly why. We work together. We laugh together- and, when necessary, we cry together. So, while a book instructing you with how to cope with very public and very projectile vomit isn’t exactly romantic, the love and cooperation that went into each page certainly is.
  2. It’s likely to boost your confidence. Do you want to know why it will boost your confidence? Because as you read through this book and experience our raw honesty, there will be times when you’ll think, “I would never be dumb enough to get myself in that situation.” See? You’ll feel smarter. Okay, seriously, this book talks about embarrassing symptoms that so many of us face- brain fog, incontinence, mobility struggles, etc. Let’s be honest- I’m about as graceful as an elephant changing underpants. I have a long history of blunders to share. I will give you tips to saving face as much as possible when your body decides to be a jerk in the least convenient of places. Personally, I always feel more confident when I have a contingency plan.
  3. People seem to actually like the book. You guys, I have reviews, and they’re not bad. They’re actually, well, great! Even more impressively, to the best of my knowledge I am not related (by blood nor marriage) to anyone who has reviewed my book. You never know when you write something if it will reach your audience in the way you hope. There’s a chance that Joe and I have been drafting and typing our little hearts out on a project that stinks. But . . . it’s beginning to look like it doesn’t. I actually believe we may have accurately portrayed this life in a way that others can relate.
  4. It will make you cool. Okay, there are many words that could describe me, and “cool” will never be one of them. I will never listen to the right music or understand pop culture references. However, illness has made me more sensitive to the needs of my chronically ill/ disabled friends. We have done our best to convey to significant others, caregivers, friends, congregations, and ‘that lady from WalMart’ how to be aware of the needs of others. And, seriously, what’s cooler than compassion? Am I right?
  5. I will appreciate your support forever. Everyone isn’t in a place where they can buy a book. I understand that completely. Please know that every word of encouragement, like, and share mean the world to me. My Crazy, Chronic Life blog audience was the driving force behind this book, and your love and encouragement help me keep my head above water on the hardest days.

Friends, each of you have encouraged Joe and I throughout this process, and we truly appreciate it. (I considered telling everyone that to show our gratitude Joe would be available to sing at the wedding of anyone who buys our book. Strangely, he didn’t consent to that.) So, one more time for the people in the back- my book link is below. Try an excerpt. See if it’s for you- or if it might help someone you know.

Peace, love, and health to each of you.

The Stages of Falling- Crash, Bang, Pow, and Ouch!

Here’s a truth I don’t care to admit- I spend most of the time that I’m upright hoping that I’ll stay that way. The reality of worsening and limited mobility is that I’m forever afraid of falling. I joke that any day I’ve managed to keep my butt above my ankles is dang good day. To be honest, that’s a pretty high standard for success in this body.

Literally minutes before typing this I lost my balance while bending down to open a container and fell onto my ample behind. Thank goodness for its, um, padding. While lying in the floor deciding if I needed my husband to come help me out of said floor, I started thinking about the stages of falling, and I quickly decided my chronic illness friends would possibly identify with my struggle.

Stage 1: Confidence

I haven’t walked around with total confidence in a while. I always feel like I’m testing out my joints and hoping for the best when I take a step (or, God forbid, walk down steps!). However, it’s always in the moments that I forget how careful I have to be with janky joints that I end up biting the dust. Stage 1 is the most unassuming of all the stages. It’s also the most unavoidable- but, seriously, who wants to avoid having confidence?

Stage 2: “Oh crap!”

Stage 2 is that awful moment when you realize your plan has gone awry. It feels like the sudden onset of a stomach virus coupled with the awful realization that you’re naked. Lovely visual, right? The “Oh crap!” moment is worse than any injury, because your brain moves at lightning fast speed. In the split second I think I’m falling I manage to have each of the following thoughts. “Who’s watching?” “What am I going to hurt?” (Side note- I have a rather expensive bladder pacemaker inserted in my left hip, so I’m very careful to never land on it if I can help it.) “Am I wearing a dress- is there any chance of me flashing my unmentionables to the world?” “Don’t say anything crude or vulgar!” (The struggle is real, friends. When you frequently dislocate joints or tumble onto the ground you have to develop a list of family friendly interjections. My current favorite is, “Holy Potato!”) In the .04 seconds that I realize an impending crash, my entire life- or at least my entire current situation- flashes before my eyes.

Stage 3: Crash! Bang! Pow!

Occasionally, the “Oh crap” stage doesn’t lead to a fall. Occasionally, I recover, look around to see who noticed, and act like nothing ever happened. Typically, though, Stage 2 leads to Stage 3. Stage 3 is that moment when you hit the floor. I’ve learned to land on the most padded part of my body- my behind. It’s not nearly as noisy, and there’s not much there to break (assuming I avoid that left hip) or dislocate. The most important part of Stage 3 is avoiding injury as much as possible.

Stage 4: The assessment.

This is the part after you’ve hit the floor when you have to decide if you’ve wounded your body or your pride. It’s tough to tell. The waves of embarrassment, hilarity, and adrenaline hit much harder than a physical injury. However, before you jump up from your prostrate position (Seriously, there’s no “jumping” on these joints.), you have to take an inventory of injuries. Have I hit my head? No. Has anything dislocated? Probably. Is it fixable without an ER trip? More than likely.

Stage 5: Keep moving forward.

There was a time when I grieved over every stumble. I worried that someone had seen my body admit that it’s ill. You know what? I’m over it now. I make every effort not to fall in public. However, if it happens, I’ll get up- as soon as I’m able- and keep moving forward. Chronic illness and disability have so many limitations, and I refuse to let my own pride become one of those constraints. For now, I’ll laugh when I’m able- because, come on, sprawling in the floor is a little bit funny- and cry when I must.

Peace, love, and health, friends.

This is my current EDS/ falling on my booty anthem- Unsteady

The Interesting “Side Effect” of Being Chronically Ill

When you become sick you enter into a secret world you never imagined you would even visit. You enter a world where “dress up days” are for doctors’ appointments, and showers are a luxury rather than a routine. You trade fashionable clothes for pajamas. Girls’ (or Guys’) Night Out is exchanged for a snuggle night with your fur baby and Netflix. (Let’s all take a collective moment to appreciate all that binge watching has brought to our lives . . .)

And all of that . . . well, it sort of stinks. I like yoga pants as much as the next 30 something, but it would be super nice if I were wearing them because I like the look rather than because jeans will cause my hip to dislocate. There are a lot of unfortunate tradeoffs when your life deters into the world of illness, and I won’t lie- I’m typically not a fan of all this life offers.

However, there is one super fantastic thing that happens when you’re chronically ill. Even though I would gladly exchange health for this perk, I’m glad it exists. It’s basically the only redeeming quality. When you are chronically ill . . . you get an extra family. In my first few days and weeks of realizing that illness had become a part of my life, I had never been lonelier. It wasn’t until I saw the phrase “chronic illness” that I realized I had a new identity. I was chronically ill. Armed with that phrase, I began searching for “my people.” Thank God for social media. Thank all that is good and holy that I found Facebook groups for the chronically ill. You know what? No one tells you when you become chronically ill that you inherit an entire family of supporters through Facebook, IG, and Twitter.

I get it. I know there is more to life than social media. I understand the risks of spending your life connected to social media rather than the life that is going on around you. However, the life that is going on around me isn’t terribly glamorous. Today, I’ve kept up with my medicine schedule, taken injections, and worried about my bladder pacemaker. Does that sound like something you wouldn’t want to be distracted from? Yeah, I didn’t think so. Don’t get me wrong. I have a wonderful family and friends. They do all they can to support me. However, it doesn’t change the fact that they haven’t traveled this exact road of illness that I’m experiencing.

Why does it matter? A few months ago I posted to one of my chronic illness support groups that I felt discouraged. I explained to them that I had been trying to go to the gym, and I was accumulating far more injuries than progress. You know what? They GOT it. My online family reassured me that effort counts. They told me success stories- as well as their stories of dismal failures. Of course, every human has experienced health gains and fails, but only the chronic illness community can truly understand the struggle. Only my chronic illness family understands the pain of doing your best and having a body that just won’t cooperate. In that moment- in so many moments- having someone to say, “Yeah, I feel your pain” means infinitely more than advice.

In so many other instances, I’ve seen friends who had a daunting diagnosis, a failed relationship, or a traumatic doctor’s office experience receive support and love from dozens of people who have never met them. We support each other. We empathize. We ultimately strive to hold each other in this painful game of life as well as possible. For that, I am beyond grateful.

Years ago, before my health struggle became blatant, I would have told you I have all the friend and family support I need. I would have told you that it’s impossible to trust friends you have never met face to face. I would have believed that face to face encounters matter more than the relationships we forge through online communities. To some degree, I still believe that. However, I am forever grateful that I have an online family that understands the “sick life.” I love that people I have never met know that I love Disney more than any adult should, so they tag me into cute Disney memes. I appreciate that my odd obsession for sloths hasn’t gone unnoticed by my Facebook friends. I am grateful that I exist in a world that thinks I’m “normal.” The real world thinks I’m little more than the victim of unfortunate circumstances; my online chronic illness family knows that I’m doing my best. They see my struggle because it mirrors their own situation. They know I’m doing my best- even when that means I’m stuck on the couch for days.

Chronic illness bites. It’s a life sentence without parole that I wouldn’t wish on anyone. However, there is one wonderful side effect- online support. It exists, and it makes my days and nights more tolerable. As much as I appreciate my online family, I am fairly confident I’m not the only one. I’m guessing that throughout the community of chronically ill people, there are many who have benefited from the love and support of their new online family. That . . . well, that restores my faith in this chronic life. We have each other to lean on, and I know beyond a shadow of a doubt that really matters.

Have I mentioned that my online family is also great at suggesting binge worthy shows from Netflix? Yeah, that makes them awesome too.

Peace, love, and health, friends. 

Want more Crazy, Chronic Life? The blog has been compiled into an e-book via Amazon. Check it out, please! 💙  Newly Wed and Stuck in Bed- Chronic Illness, You Don’t Know ME!Click here to check it out!

Taking a Chronic Illness to the Gym- the loftiest of endeavors

I hadn’t been to the gym in a while until today. A few weeks ago my body went all “Let’s throw a fit and make Tiffany black out and have chest pain,” so it slowed down my work out flow to say the least. Today I made it back. I’m doing a very amended work out (one hour on the recumbent bike with no resistance- yeah, I know. I’m a beast.), but I’m trying. I figure as long as I’m still trying, Joe isn’t married to a potato, and that’s a positive thing. (I think- I mean the guy really likes potatoes). Since it was my first day back, I decided to record my thoughts- not because they were especially brilliant, but because I knew my crazy, chronic family could relate.

Sitting in the car- I’m not going in. Everyone looks skinny and healthy. Holy moly, that girl is lifting some serious weight. (I am too, but only when I get myself out of the car . . .) Is the whole stinkin town training for a marathon I know nothing about? Do I have any chips in my car? That seems like a better decision at this point.

Walking in the gym- Don’t let the man who works here notice when I scan my check-in card that I haven’t been here in close to a month. Dang it. He totally knows. He said, “It’s nice to see you.” What he’s really saying is, “It’s nice how you drug your lazy self back in here.” (Actually, no. He’s so nice that he would never say such a thing, but the guilt is real.)

Beginning the work out- Where do I start? What is everyone else doing? Oh, yeah, I can’t do that. Abs. I can work on abs. I think somewhere along the way a doctor told me that working on core stability would help my symptoms- or maybe I heard that on an infomercial. Sigh. I have no clue what I’m doing. The ab machine looks least likely to dislocate something, so I’ll do that.

The actual work out- Ouch. Ouch. Should working abs make your lower back feel like it’s going to split open? Is that normal? It’s probably normal. No one else is crying. I’m not going to cry either. Is that a tear? Nope! Just sweat! #killingit A man just asked me if he could work through. What does that even mean? Is he asking if he can work through his problems? I certainly hope he can. Should I offer to pray for him? This gym thing totally confuses me.

I’m moving on to the recumbent bike. It’s totally not made for the under 5 foot crowd, but if I pedal with my tip toes it’ll work. Holy cow. Is that girl still lifting weight? There’s no way she weighs as much as the weight she’s lifting. I must find out her secret. Oh wait, her secret is probably joints that don’t dislocate from simple tasks. Maybe I’ll ask her about that. I won’t. That would break my cardinal rule of gym attendance- don’t speak or make eye contact. They’ll never realize what a hot mess I am if I just don’t speak.

How long have I been on this bike? I’m only pedaling an hour. Darn it. It’s been 6 minutes. Why doesn’t time go by this slowly when I’m drinking coffee and binge watching One Tree Hill? Oh yeah! I can watch OTH while I pedal. No, I can’t. Someone is sitting next to me talking loudly. He’s talking about how nice it would be to be 30 again. Maybe so, dude, but 31 is a struggle right now.

The end! The beautiful end! I made it! I survived an entire hour, and I only stopped once to move a kneecap back into place. (Tricky little booger) I didn’t black out, double over in chest pain, or have any dislocations that I couldn’t handle on my own. YES!!

It can’t be a coincidence that my gym is located next to a Sonic. Time for a milk shake!

Peace, love, and health, friends.

Back off, Bullies.

There was a girl in junior high who knew every other student’s weakness. She knew which kid would be hurt by being called fat or ugly or dirty or (in my case) “frog eyes.” (It’s true. I have huge eyes. I’m over it now. Besides, I like to think they give me an Amanda Seyfried vibe . . . Yeah, okay- maybe not.) She would use this mental list of everyone’s weaknesses as ammunition to wound most effectively. While I commend her excellent memorization skills, I realize now this girl was just a bully. At the time, I thought she just happened to speak the truth that was the most painful, but I realize now that she was intentionally taking aim with the most painful arrows- because that’s what bullies do.

Now, I’ll give this girl a break, because she may have grown up to be a perfectly lovely individual. I don’t really know. I only know that I would never want to be judged based on my 13 year old actions. What I learned from her, though, is that there are people that will wound without any regard for you. Even in the non- junior high world, bullies exist.

The real question is why I’m choosing to write about them now. I’m 31 years old; I should be over crying in the girls’ bathroom about being called “Froggy.” In many ways, I am over it. However, the more time I spend trying to support and advocate for the chronic illness community, the more I realize that we are easy targets for bullies. I keep seeing my friends- my chronic illness family- used and abused, and it makes me angry. So, I’m speaking up- for all of us. Back off, bullies. We’re sick, but we’re not victims. Every type of bullying I mention isn’t necessarily a type I have personally experienced. It is, however, a growing trend I see among my chronic illness friends, and today, I’m asking that you lower your metaphorical weapons.

Adult bullies aren’t as easy to understand and categorize as the thirteen year old “mean girls.” Some grown up bullies think they’re helping or just showing “tough love.” I get that. I’m sure there are times that I have had the best of intentions and just gotten everything very wrong. That’s why today, I’m calling out the grown up “mean girls (and their gender/ age equivalent)” that may have no clue what they’re really doing.

The social media merchant. There are so many online businesses right now, and I applaud anyone who is making money by selling a product they love. That’s awesome. Seriously, you rock, and I admire your effort. Having said that . . . stop exploiting my chronic illness. Do not tell me that your product will cure my genetic illness (that causes my very DNA to be flawed) just because it cleared up cousin Suzie’s eczema. All the InstaGram before and after pictures in the world do nothing for my community. Let me be clear- if you tell me about a great product that you sell, I am capable of understanding that it’s a business. I’ll listen to your sales pitch and thank you for sharing. However, if you are a perfect stranger and approach me just because you heard that I am chronically ill (and this happens way too much) to tell me that if I wanted to feel better I should try your product . . . then NO!

How is that bullying? Let’s think about the situation. A person who is peddling whichever “snake oil” happens to be popular is telling me that I am choosing my illness because I won’t buy their product. You are telling me that buying your product is “an investment in health,” but you fail to see that I spend every day investing every ounce of my mental, physical, and fiscal resources in my health. I’ve seen kind and well-meaning people post on social media that “ . . . if you’re tired of spending money on doctors, make an investment in [such and such product].” Really?!? Your shake, pill, or oil is going to stop my need to see a qualified medical professional? No, it’s not. Think about what you’re saying. I have my doubts that any magic concoction is going to trump the doctors and scholars at Vanderbilt University or Cleveland Clinic. Are you truly trying to tell me that I have wasted my money and time going to these places rather than using your social media cure?

The Pharisee. Let’s be clear; I am a person of faith. I was raised in church, and I am truly grateful for the values of love and kindness I was taught there. I am not calling out those with religious convictions. I have been so blessed with thoughtful people who have prayed for me when my health was in a difficult place. But then, there are the Pharisees. The Pharisees throughout Christian scripture were people who chose to focus on laws- rules of right and wrong- rather than the values of love and kindness Christ came to teach. They were far more concerned with the letter of the law rather than the spirit behind the law. The Pharisees saw every affliction as repayment for wrongdoing- rather than just an unfortunate situation. Sadly, these people still exist today. I recently read a post from a fellow sufferer of chronic illness where she was told that she simply chooses to be ill. A minister told this poor soul that if she had enough faith, if she prayed enough, if she followed Scripture closely enough and did enough good, she would have already been healed.

Yeah, sorry, Mr. (or Mrs.) 21st century Pharisee, but that’s not how life works. My body is human, and it is afflicted with some very un- heavenly illnesses. I refuse to believe that I caused this or that following your list of rules would cure me. I refuse to believe that I was pre-destined to this suffering. So, if you’re telling me that I made this happen- you’re being a spiritual bully. I did not choose to have flawed DNA. I do, however, choose to live every day loving others and being kind. And, if you are walking around telling others that they chose their illness, their own personal, physical hell, you haven’t made that same decision. You’re being a spiritual bully.

My husband (and I only share this because he has given me permission to – and insisted that I- do so) suffers from depression and is under medical treatment- which has been wonderfully successful to this point. In the wake of Robin Williams’ death, he was met with his own personal host of Pharisees. Pastors and other people of conviction took to their pulpits and social media to blame Robin Williams’ death on his lack of faith. I’m not sure that these speakers understood how much their words were undermining the efforts of the medical professionals who were treating some in their congregation for similar illnesses. The truth, however, is that Mr. Williams was ill. He struggled with depression and mental illness. I don’t know Robin Williams’ personal beliefs- they’re his and not my place to pry. I do know, however, that he was sad and ill. I know that others with mental illness need to hear kindness and compassion for his situation- not blaming and hatefulness. My heart broke as post after post and uninformed sermon after sermon we were forced to hear mental illness blamed on weakness, lack of faith, and a poor relationship with our Creator. In fact, the bullies were waxing eloquently on a situation they didn’t understand. Bullies do that. Pharisees do that. Sorry, Pharisees, but I would very much like it if you would leave me and my husband (and the lepers) alone.

The consort. Let’s talk relationships. My husband is wonderful; he really is. However, what I keep seeing repeatedly among my chronic illness friends is that relationships are especially difficult in the chronic illness world. Night after night I message with friends who are facing verbal (and sometimes physical) abuse, because their illness is making them not meet the aggrandized standards of their significant other. I know that guilt. There was a time that I truly prayed that my husband would leave me, because I knew he deserved better than this sick, shell of a wife. My remorse for the person I was becoming was all-consuming at times.

Having said all that, not once in all this grief have I deserved abuse. Trust me- I was abusing myself plenty; I certainly didn’t need more guilt. My husband was fantastic. He knows I’m a hot or that sometimes I go a couple days without washing my hair (much like the college students he teaches), but he has never once made me feel like less of a person. I have other friends who have not had that luxury. Please, spouses, partners, and significant others, listen to me when I say- back off! If your significant other is ill (mentally or physically), love them for who they are- every flawed inch of them. Due to their roles as a disabled/ chronically ill adult, if the house isn’t clean; heck, if the spouse isn’t clean, give him/her a break. They’re doing their best. If you look at the person you profess to love and see them as less of a person because of their illness, you’re bullying them. If you refuse to believe their illness is real- you’re a bully. You have chosen to face life with this person. There is a part of them you chose to love completely. You are supposed to be their cheerleader. You are supposed to be their advocate. If you are anything less, you are being a bully.

For those of you who are in such a relationship, I am sorry. I am truly sorry, and I sincerely hope and pray you eventually receive the understanding and deliverance you deserve. This treatment is toxic to your illness.

I fear in writing all this that you think I’m a jerk. The last thing I want is for you to think that I sit around waiting to call others bullies. (I’m fairly confident that would actually make me a bully, and that’s certainly not my intention- and that would defeat my entire purpose.) I simply want to make everyone think. I want to make others realize that it is not okay to blame someone’s illness or circumstance on that person. Even if you can’t see something, that doesn’t make it a figment of someone’s imagination. Believe me. Believe that I didn’t choose this life. Believe that I wanted more than this for my life, but I understand that this is the genetic hand I’ve been dealt. No one gets to bully me for something that I couldn’t escape.

You, my sweet sufferer of chronic illness, no one gets to victimize you either. We’re here. We’ve got each others’ backs, and, today, we’re asking that the bullies lay aside their weapons. So, bullies, back off. We mean it. We aren’t your victims, and we will retaliate- in our own crazy, chronic way. And, seriously, who even knows what that means?

Peace, love, and health, friends.

 

 

Chronic Christmas Craziness and Other Communicable Diseases

Confession time, friends. Yesterday, I had a full Clark Griswald-esque Christmas meltdown. You know that scene from the movie when he finds out his long awaited Christmas bonus is nothing more than a membership to a jam of the month club? (Which is a pretty dang cool gift, if you ask me.) He proceeds to totally have a total freak out of epic proportions . . . yeah, that was me. Now, before you label me a Scrooge and believe that I need to be visited by some of Charles Dickens’ ghosts, let me explain.

Holidays are tough for the chronically ill- really tough. For me, I feel like holiday time exposes all my flaws. The rest of the year I can hide that my house isn’t always neat and organized. I can keep you from noticing that I don’t have the energy to wash my hair (or even shower sometimes) more than every other day. My cooking short cuts (I’ve got to make a blog about that soon!) can fly under the radar. But at Christmastime, you’re going to see these things. When I sit around with family members chatting about the past year, you’re going to notice that I start lying down or leaning over- because for some reason I can’t sit up for long without my ribs moving out of place. You’re going to see that my Christmas cooking came from Kroger (grocery store, non-US, friends!). And, if you look closely, you might even notice that Joe has to open bottles and cans for me, because my hands won’t cooperate lately.

Although these are all parts of my daily reality, Christmas makes me feel much more exposed. Don’t get me wrong- my family is fantastic. I can’t think of a single member that would tease me (well, they might good-naturedly tease me- but NEVER hurtfully) for the things I cannot do. I’m very blessed to have a group of people who love me and do not think less of me when I just CAN’T do something. The problem lies in that I hate looking pathetic. I hate looking like that hot mess that just can’t get it together. There’s nothing more dehumanizing than being pitied.

So, anyway, back to last night’s meltdown- here’s how it went down. I was trying to cook real food- things that didn’t come pre-made from Kroger. In the process, I cut my finger, dislocated my shoulder and a finger, dropped essentially everything I touched, and somehow my blender full of boiling strawberry puree exploded. (FYI- If you’re covered in boiling hot strawberry puree and you yell for your spouse to come help you, FIRST explain to him that the red super-mess is NOT blood. The poor guy was preparing to apply pressure!) Somewhere during all of this, in a moment of panic (and chest pain that’s been haunting me for a couple days) I sat down on the kitchen floor and wailed, “I think I need to CRYYYYYY!!”

Poor Joe. He’s been through these meltdowns enough to know the protocol. He brought me a chair and a Cranberry Sprite Zero (yum!). He reminded me that everything that we were preparing for was fun- not something to freak out over. He even reminded me that we are celebrating with people that we love (and even like) who accept us exactly the way we are. He’s right. I just got caught up in the craziness of wanting everything to be perfect.

Here’s the truth. I will never have a Pinterest-perfect Christmas. My Christmas cards will be store bought, and my handwriting will probably be illegible after the first few. My gifts will always come from whichever store looks the least crowded- or better yet, Amazon. I can’t remember to buy things like bows for gift boxes or name tags. Joe did the wrapping- it’s not exactly his greatest gift in life. The gifts we bring are lumpy; the paper is ripped and patched, and the recipients’ names are written on the side with Sharpie. To be honest, Im not even sure if I put the correct name on gifts. So it’s possible there will be a gift shuffle at the end because I have given my brother the Princess castle intended for my 2 year old niece.

But . . . post-Griswald-esque meltdown, I’ve decided I’m okay with the imperfections. I may not feel fantastic sometimes; I’ll excuse myself and rest. I may not be able to get food on the table on time (you know, that food I just have to re-heat because I ordered it from Kroger), but we can just eat later. I might lie down while I visit with my family; I’m sure they’ve seen me do stranger things. I’m going to relax as best I can and enjoy this crazy, chronic Christmas.

So, um, could all of you remind me of this over the next few days?

Merry Christmas, chronic illness family. May your heart be filled with the hope and joy of this very special (and sometimes crazy) season.

Peace, love, and health friends.