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!

Rolling through Disney in Style

This post will be short, because I’m in Disney World. I’ll be honest, I’m only updating because there’s a torrential downpour at the moment. (Florida friends, what’s with the weird rain? 90 degrees- then a downpour- 70 degrees for a few minutes and then 150 degrees. It’s insanity!)

Life is great here. Wheelchairs are not the most comfortable mode of transportation, but I can put up with some neck pain to be in the happiest place on early. Besides, the Hodor to my Bran is pretty cute. (GoT fans, where are you?)

 

(Okay, not his best pic. At that exact moment, Joe was marching in a Celebration of Friendship parade with Winnie the Pooh.)

Anyway, we’ve had breakfast with most of the Hundred Acre Woods. 

Interesting fact- Tigger is as full of boundless enthusiasm as you would expect. His hugs hurt, and I think he may have separated some ribs. (Seriously. Ugh.) 

I also had dinner in Mexico- or at least the Mexican Pavillion. I don’t remember what I ate, but it was delicious. 

The blog won’t let me add anymore pictures, and my brain fog level won’t supply me with more words. So… I’m out. It’s time for a crazy, chronic nap in the happiest place on earth! 

Peace, love, and health. 

T-5 Days Until Disney World!

I woke up to one of the sounds of summer this morning; Joe was singing. (Let’s all have a brief moment of reverence for the loss of my quiet morning routine.) He is a morning person, and I’ll be honest,  I think God’s sense of humor has never been more evident than it is in the fact that I married a person who sings in the morning. Ugh. All the ughs. All griping aside, the sounds of summer mean two things. 1. The college semester has ended, and Joe is home for the summer. 2. It’s time to go to Disney World. (I promise- I’m really excited about both things.)

We are five days away from going to Disney. Joe is totally packed, and I have refilled all my meds- so essentially we’re ready to go. (Yes, I realize I have to pack clothes, as well, but seriously, Joe would rather have me medicated than wearing clean clothes.) I’ve already written about the preparation process of Disney and general advice (Here.), so I’ll spare you the monotony. However, I want to share the pre-vacation prep schedule with you, because I know I’m not the only one in our community who deals with this.

1. Packing. I hate packing.

Joe is totally packed. I don’t even have enough clothes to be decent for a week. Here’s the struggle. First of all, why are women’s shorts so indecent? Don’t get me wrong; I think women (and men) should dress however they’re comfortable. I’m just not comfortable in shorts that’ll make me feel like I forgot to wear any. Also, there’s the whole wheelchair situation. (For those of you new to the crazy, chronic game, my wheelchair’s name is Snookie, and she’s infinitely more fabulous than I’ll ever be.) Some shorts are just not meant for sitting, and my body was clearly not meant for standing. It’s a colossal conflict of interest on the best days. So, yeah, I have to buy shorts within the next five days in my teeny tiny town. Ick.

2. I’m in energy save mode.

My house could stand to be cleaned. Some of the clothes Joe packed could use ironing. You know what? It’s not happening unless magical fairies bestow me with their abilities. That’s okay. It really is. I’m doing everything I can to reserve my energy for the vacation I’ve been making payments on since last July. I’m sleeping 10+ hours. I’m napping when I want to. I’m generally refusing to do anything that I don’t absolutely have to do. Fortunately, Joe is totally cool with that. He actually requested that I save as much energy as possible, and I’m grateful for the suggestion.

3. Planning for the worst- hoping for the best.

Let me be clear. I have no plans of having a health meltdown while I’m in Disney World. Clearly, Joe and I wouldn’t plan a vacation that we didn’t think I could handle. However, I’m trying to be practical. I’m packing books in case I don’t feel like leaving the room one day. I’ve taken every possible precaution for general comfort. (Here’s to hoping my body doesn’t throw a huge EDS tantrum!) I have rescue meds, cool packs, KT tape, and anything else that might be useful. I’m not being negative. I think my week at Disney will continue to be my favorite week of the year. At the same time, I don’t want to be totally unprepared for something that I knew could possibly happen. Besides, who really wants to buy a $9 bottle of aspirin in the most magical place on earth? If my body decides to throw a curve ball, I’ll be prepared (unlike my Braves . . . smh).

I’m excited- can you tell? I can hardly wait to go. I’m aware that it might not be the type of perfect healthy people imagine, but I can almost guarantee that it’ll be Crazy, Chronic Perfection. At this point, that’s all I ask. If you want to follow me on my Disney journey, feel free to friend me on FB (Click here- be my buddy!). I can also guarantee that I’ll upload pictures all day every day, and I’ll try to keep you informed on the whole traveling with a disability thing too.

Hugs to each of you always!

Peace, love, and health.

Awareness Months Matter

During Dysautonomia Awareness month, someone asked me how the awareness month helps me personally. This person wasn’t being snarky or belittling. He just wanted to know what the purpose is. I understand his line of thinking. Sharing a Facebook post will not make me feel better; wearing a tshirt that supports awareness will not pay my medical bills. When faced with the reality of a chronic condition, all the tshirts, Facebook statuses, and Instagram graphics in the world seem inadequate.

However, for many of my chronic illness friends (including myself), awareness is our hope and life line. We’re met daily with not only the challenges of our condition- but also the lack of understanding of others. Don’t get me wrong. I don’t believe the whole world has ganged up on me. Not at all, most people are quite lovely. However, due to the lack of understanding of my condition, I find myself in situations often where a little awareness would go a long way.

Awareness month matters to educate medical professionals.

Remember, Dr. Deficient? ( This guy ) I’m fairly confident that he reads online news, uses social media,  or has idle conversation with people while standing in line at the movies. Why? Because, even if he wasn’t a very understanding doctor for me, I’m assuming he is a human who engages in human activities. What if in the days before I went into his office he had seen several infographics about my disorder? What if he saw an Ehlers Danlos awareness tshirt while he was standing in line? Of course, it’s entirely possible he wouldn’t have noticed or cared, but there is also the chance that could have been a game changer for my medical care.

Awareness month matters to educate friends and family.

I realize I talk a lot about my illness on my blog- because my blog was created to support others who are dealing with the crazy, chronic life as well. In day to day communication, it doesn’t always come up. (Trust me. I’m awkward enough without greeting people by saying, “Hello. I have a rare disease that makes me fall apart sometimes!”) My friends and family learn about my illness through the information I share. How does that help? What if I’m out with a friend and faint or dislocate a hip? He/She will be more likely to know what is happening if they have a basic understanding of my illness.

Awareness month matters to the undiagnosed.

I was diagnosed with Ehlers Danlos Syndrome two days before my 30th birthday. Up until that day, I truly believed that I was less resilient than the general public. I had no clue why I had to fight tears when I walk down stairs, and other people can handle it. I thought I was immature as a young child when writing made my hands cramp until I cried, and no other students my age were crying. I had no idea there was a name for my struggle. I believed ugly words like weak and lazy, because I didn’t have a diagnosis to explain how I felt.

My mom recently shared a post about Ehlers Danlos Syndrome on her own social media. I was touched that she took time to do that. When I asked her about it she said, “I thought of all those years when we didn’t have answers for what was wrong with you, and I knew how much I would have appreciated someone sharing this information with us. Maybe it’ll help someone else.” Good words, Momma. So true.

May marks the awareness month for many conditions. (I’ll be honest. I’m afraid to try listing them, because I know I’ll leave someone out.) If it’s your month, let me encourage you to share information, encouragement, fund raisers, and anything else that you think needs to be said. This is your time of the year to attract attention for your struggle. Make some noise! Spread the word! Your awareness month matters!

Peace, love, and health, friends.

Sorry, not sorry. Social media is my bestie.

My husband is the ultimate extrovert. Put him in a crowded room and he’ll feed off the energy for days. Me? Well, the very thought of a crowded concert or even a potluck makes me cringe. I love people, but I’m not a person who can work a room. It’s unsettling for me. Add to that the constant fear of brain fog moments, health issues, and general social anxiety, and I’m a hot mess in a crowded room.

This seems to be the lament of many of my chronic illness friends. It’s not that we don’t like people, but rather that being around people is complicated. When you feel bad it’s hard to have the ambition for social engagements. Chronic pain makes it hard to concentrate on the conversation you’re having. And, to be honest, just the general lack of understanding the public has for my (and many others’) invisible illness is unsettling.

Basically, I’m too dang awkward to be in public. Just this morning at church a woman a couple pews in front of me turned around to shake my hand. She was far enough in front of me that she had to lean over the pew between us and still couldn’t reach me. I was sitting while everyone else was standing, because my heart was doing the cha-cha in my chest. In an effort to act like I had decent social skills, I stood up to lean toward her- then stumbled and grabbed the edge of the pew for balance. Then I burst out with a barely intelligible line- “I’m sorry. I don’t stand good.” WHAT?!? Of all the possible things I could have said, why did I say that? Seriously, there’s never an excuse for bad grammar. I should be kept in a cage.

However, on Facebook or Instagram, I’m a completely functional adult. Given the time to think about what I’m saying before I say it, I make sense, and I’m typically grammatically correct. (Full disclosure- I still rely on autocorrect for spelling.) With iPhone edits and social media filters, I’m way more cute and graceful. I need social media to be a normal person. I realize that you’re probably thinking, “You don’t have to be perfect. You want to make friends based on who you are- not a contrived online profile.” I agree with you. However, when illness turns your body into something you don’t even recognize anymore, I think it’s fair to find your confidence for entering the public realm wherever you can find it- even if it’s in the unrealistic world of social media. It’s helped me find who I am again, so I thought I’d share it’s virtues with you.

  1. I’ve made friends. It’s true. When I have exciting news, one of the first places I want to share my news is one of my chronic illness support groups. You see, at one point I had work friends, but the disabled life doesn’t exactly afford many of those. I met people for lunch and coffee, but that’s a little harder to do now. There are weeks that go by, and I don’t speak to any humans in person other than Joe and the lady who gives my allergy shots. However, my online friends are always around, and if they’re not they will be eventually. I’ve had the opportunity to meet people who live a life very similar to mine. I can share victories that don’t seem like victories to my healthier friends. My chronic illness friends understand when I post, “Guess who took a shower, fixed their hair, went to lunch, and unloaded the dishwasher today? This girl!” Normal people would probably not realize this is a huge achievement. My chronic illness friends on social media understand that this is a big day!
  2. I’ve found a way to be a part of something that matters.  As my health has changed, I’ve been less capable of doing a lot of the things I used to do. I can’t volunteer to tutor students or teach Sunday school. My body isn’t very reliable. For a while, I felt like I no longer had a purpose or a way to contribute to the good in the world. However, I learned that the social media world is filled with lonely and isolated people- like me. I can’t be there physically, but I can listen. I can offer prayers and hope and encouragement. Online support groups have been a fantastic outlet and a great way to try helping others rather than focusing on my own problems.
  3. Social media has an off switch (and it’s available 24/7 too!). If I have a migraine or a particularly symptomatic day, I have the option of not looking at social media. Instead of being online when I feel sick and grumpy, I can make the choice to stay away. Of course, you can make that same decision in real life, but it’s more difficult. Real life people involve commitments and explanations. Online interaction happens when it happens. There’s always someone there when you’re ready.

Is social media the perfect answer to all social interaction? Of course, not. It’s important to make friends who can actually be there physically when you need someone. However, if you can’t handle all that yet, social media is an awesome place to start. I’m unapologetically in love with Facebook and Instagram. (Twitter is just not my jam.) Does that mean that I’m one of those people that’s tied to their phone screen a lot of the time? Yes, but it’s only taking away from my napping life or doctor’s office waiting time. I’m okay with that. This life is difficult enough, and if an online support group, online friends, or anything else makes life easier for you- I say do it. Social media can be your bestie too. She’s big enough for all of us, and I promise not to be jealous.

 

Peace, love, and health, friends.

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.

4 Reasons Why Everyone with a Chronic Illness Needs a Pet

zoeyZoey2A few days ago I had a meltdown. I’m not proud of it, but it happened. I had one of those “nothing is going right- why does everything have to be so difficult?” days, and it ended with emotions that poured out of my eyes. I laid on my bed last night and threw myself a really ugly pity party. Somewhere during this tantrum, I opened my eyes to see my almost eleven year old shih tzu, Zoey, staring at me. When we locked eyes, she jumped on my chest and started licking my tears away. That was neither my finest nor most sanitary moment, but it warmed my heart on the most basic level. Pets love us- even when we’re throwing ourselves an unwarranted tantrum. My sweet Zoey laid with me the rest of the evening and into the next morning, because she loves in my spite of my dramatic self.

When you live with a chronic illness, life is difficult. Every day is difficult. It helps to have a buddy that doesn’t expect you to explain yourself. My Zoey-pup has led me to this conclusion- every person with a chronic illness needs a pet. Here’s why.

Pets give us a purpose. 

I realize in writing this I’m ignoring the fact that many of those in my chronic illness family have children- and from what I hear, they’re demanding little boogers. (I hear you also have to pay for their clothes and education. My dog requires none of those things. Thank goodness!) For me, though, I have a husband who gets up and goes to work every morning. While I think that’s awesome (it keeps us off the street), it also makes me lonely. Before Zoey came to live with me (She lived with my mom until about 3 years ago), I had absolutely no reason to get out of bed. I would lie in bed until time for Joe to come home from work. I was sad and directionless and sick- those all felt like good reasons to stay in bed. Now, no matter how bad I feel I know I have to get up to walk Zoey. Some days it’s a hassle. My grumpy, elderly pup will take her sweet time while I lean against a porch rail trying not to faint while she’s finding the perfect spot to relieve herself. (Side note- What exactly are dogs sniffing for when they’re looking for a place to use the restroom? How do they know it’s the “right” spot? I’ll Google this later.) However, I would never make her suffer because I feel bad- even if it means following her around the back yard for ten minutes while she searches for THE spot.

 

Pets are intuitive. 

Zoey understands my body better than I do. It’s not unusual for her to circle my feet and whine seconds before I start feeling like I’m going to faint. No, she isn’t trained to do that; she just picks up on what is happening. If I’m lying on the couch with an injury (dislocated hip, knee cap, shoulder, etc), Zoey wants to lay on whatever part is affected. She’s my own personal ten pound heating pad.

Years ago, when I first began having symptoms, Zoey came into my life. My mom and step dad knew I needed a buddy, and there was Zoey. She was a ridiculous little fur ball in a cage at an outdoor flea market. She kept biting her brother’s ear while he tried to sleep. To be honest, she reminded me of my own reckless enthusiasm when I wanted my brother to pay attention to me. I knew I wanted her to come home with me. Since that day, Zoey has somehow understood that she’s supposed to take care of me. She’s laid with me after surgeries and procedures. She’s helped me check for burglars. (Okay, technically, she doesn’t check for burglars, but I know if she sees someone she doesn’t know she’ll bark excitedly and wag her tail- so I make her go around corners to check for the unknown before me.) She’s made me laugh and licked away my tears more times than I can count. To be ten pounds of fluff and attitude, she totally gets me.

 

Pets keep life interesting.

Zoey has a million lovely qualities. She’s also a grumpy little monster. Seriously, she is not to be provoked; I have scars. In spite of her sweetness, she does some quirky things. Once I dropped her off at the kennel while I went to an out of town doctor’s appointment, and she bit the kennel owner and refused to come out of her cage. The owner was sending me texts that made it sound as though I had left a tiger in her care rather than a 10 lb fluff. Oops. My bad. You never know what she’s going to do.When you live the sick life, days can get long and boring.

If it weren’t for my pet, the most exciting or noteworthy part of my day might be medical. Zoey keeps life interesting. Sure- she sometimes she bites Joe or me, and I would prefer she refrain from such activities. Let’s be honest, though- her tiny teeth do a lot less damage than a lot of my maladies. Pets are great entertainment.

 

Pets are the best companions.  

When I’m upset for no good reason, Joe wants me to explain what is wrong with me (or he’s totally oblivious, because he can’t understand my variation of female emotions- he’s a male). Zoey doesn’t want an explanation; she just wants me to feel better. Some days that’s more important. Joe is my partner- the other half of my team, but Zoey is the best little friend anyone could ever have. Whether she’s trying to heal me, bite me, or soothe my drama-fest, she’s perfect.

 

Having said all that, this little fluff turns eleven tomorrow (April 7th), and I’m pretty sure she deserves the biggest puppy party ever. (She’s not very friendly with other dogs, though, so it’s a human only puppy party.) She makes my life more fun, and I’m so wonderfully grateful for that.

Peace, love, and health, friends.

Oh yeah, and puppy kisses from Zoey.