Category Archives: autoimmune illness

Blooming Where I’m Planted

tiffatvandyDo you see that girl? That’s me- four years ago. (Do you see my awesome collection of stuffed animals? Yeah, my husband specializes in fluffy gift giving.) Four years ago, I participated in an inpatient research study at Vanderbilt University Medical Center (Clinical Research Center) during the 4th of July. I knew that I would never be well enough to participate in cook outs or fireworks, so I spent 11 days in the hospital doing experimental treatment for autonomic disorders. I was new to my POTS (Postural Orthostatic Tachycardia Syndrome) diagnosis and not yet diagnosed with EDS (Ehlers Danlos Syndrome). I was confused and angry. I had left my career as a middle/ high school Spanish teacher nine months prior to this picture. I had no clue who I was or where I was going. In my mind, I had lost my worth as a professional, wife, and friend. But, during the same hospital stay when this picture was taken, there was a faint bit of inspiration that flickered amidst my desperation. I have no idea where I got this phrase- but I’m not especially creative, so I probably read it or heard it on television. But, the phrase that echoed in my mind and heart was, “You have to bloom where you are planted.”

I, like so many others, did not choose to be planted in current circumstances. I did not study to become a sick person. I didn’t marry my husband with hopes of being his disabled wife. However, if we’re all being honest, there are few of us who have written our own way. Life has planted us in some less than ideal places, and we have to decide what to do with the situation. Don’t misinterpret what I’m saying. I’m not going to tell you that all you need to do is smile or have a good attitude. Not at all. There are days when life isn’t a greeting card. There are days when I cry and complain and whine and eat all the junk food. However, in spite of a difficult situation, I choose to bloom.

Yesterday marked four years since the first picture was taken. I can still remember the emotions and pain of that day. I can remember trying to force a smile for a picture- but feeling like the gifts I was posing with were little more than a sympathy offering- little more than flowers at a funeral. Yesterday, I took a new picture- at my first ever book signing. My symptoms hadn’t changed (Has anyone else blacked out when they heard a fire truck’s siren? That was new for me.), but my perspective had.

I’m not handling all this perfectly. I won’t ever be the great inspirational story of the person who overcomes adversity. However, I live my adversity; I accept it, but I also choose to laugh and smile and advocate in spite of it. I’m blooming exactly where I’m planted- even when I wish I could uproot and move to higher ground.

So, how did I get here? I didn’t wake up one day and decide I like chronic illness. I didn’t adopt my “Bloom where I’m planted” mantra and immediately become a blogger. Heck, I didn’t even start giving unforced smiles at that point. But, I started laughing. I started looking for the hilarity of my newfound life circumstances. I slowly changed my thinking from, “I can’t believe this is happening to me” to “You won’t believe what’s happening now!” Regaining my sense of humor and finding my voice, allowed me to bloom.

The past four years have been the most transformational of any I’ve experienced. I have hurt and endured more than I would have believed. However, I’ve become more understanding. I have increased my capacity to love. Ultimately, I’ve become a person I wanted to be- but that girl four years ago could have never believed possible.

I will never be grateful for illness. If I had the ability, I would heal us all in a heartbeat. However, I am grateful that my broken heartedness has healed. I am blooming. It’s not always pretty. (Heck, I’m probably more of a weed or a wildflower than a beautiful, manicured rose.) I am proud of the growth of the past four years, and I look forward to continuing to bloom with all of you.

Peace, love, and health, friends.

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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.

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.

Trading Places . . . not nearly as cool as the movie.

In life, there are good days and bad days. There are even streaks of exceptionally good and exceptionally bad luck. And then, there are those times when you start to feel a bit victimized by life. That’s basically the story of the last few weeks at my house. I’ve reached a point of calm after the storm, and I’m finally able to look back at all that’s happened and laugh. But . . . yeah, at the time, I was definitely NOT laughing.

All summer long I have known I would be having a permanent bladder pacemaker placed in my lower back in August. We vacationed in May, went to weddings in June, and prepared for Joe’s coming semester in July- all so we were prepared for August to be my great month of convalescence.

The procedure required 2 surgeries. The first surgery placed a wire near my sacral nerve (at the base of my spine) and all the other wires were left on the outside- taped to my body. It was a long, disgusting, painful week of not being allowed to shower and trying to keep from accidentally ripping wires out of my body. (Lovely, right?) The second phase was 7 days later and placed all the wires on the inside (and made showering possible again!). It was a LOT on a body that isn’t exactly high functioning to begin with. Even though I had spent the summer preparing to be out of commission during August, I was still a little shocked at how hard it all was. The first surgery I was completely sedated, so I had the accompanying chest pain/ sore throat from being intubated. The second surgery was simpler- just twilight sedation. During the second surgery I kept thinking I was climbing beautiful purple mountains with a pink glittery snow falling . . . Every time I would try to catch a snow flake my anesthesiologist thought I was in pain and would hold my hand and pet my head. She was seriously messing up my snow/glitter catching game!

It was a lot. One of my shoulders dislocated during the prep for the first surgery. (Doctors aren’t used to patients that come unglued just from scooting from one bed to the other.) There was a small allergic reaction to the IV antibiotics. There was the whole frustration of not being able to shower. Blech. Just blech.

And then . . . it all ended except for the healing process. For six weeks following the second surgery, I am not supposed to lift more than 5 pounds (My dog weighs 10!); I am not supposed to stretch or bend at the waist. I can’t exercise or be in any type of standing water (ie. bath tub, pool). I’m still a bit restricted. Then I developed a fever. Not just my normal “I’m a little tired today, so my body is going to overheat a bit” but a true 101+ degree temperature complete with a lovely rash. I called my doctor, started antibiotics, and stayed in bed even more than I already was.

During all this Joe was doing his best to take care of me. My mom cooked and brought food from 2 hours away so we wouldn’t starve. (Joe tries to cook, but his specialties are limited to break and bake cookies and Hot Pockets.) Joe did laundry, heated up leftovers, shopped for groceries, and bought a lot of grape slushes from Sonic.

Then one night during the first week of healing after my second surgery Joe wakes up and says, “My stomach feels weird. I’m going to sit in the living room a little while.” He gets out of bed and starts heading that direction, and then I heard a huge crash- a train load of elephants type crash. It was nighttime; the house was dark. I just assumed he had knocked down the full length mirror or hit the towel rack. I chuckled until I realized the house was eerily quiet. So I yell out a half-hearted, “Are you okay?” I really assumed he had bumped into something. It didn’t occur to me that anything could be wrong until he didn’t answer. I flipped on the lamp and saw that Joe was sprawled across the floor- clearly unconscious. I jumped up and ran to him. Joe came back into consciousness with an earth shattering sneeze (weirdest sound I’ve heard in my life) and tried to stand up. Before I could get to him, he passed out again- banging his head on a door frame in the process.

In a scene that would be totally fitting for a sitcom, Joe came to with another crazy sneeze (What’s with the sneezing anyway?) and sat up as I was trying to get to him. Remember that I’ve just had surgery; even at top speed, I moved slowly. Joe sat up just as I got to him and then fainted again. This time I was close enough to catch him and lower his head to the floor. At some point during all this, I realized I was in WAY over my head. I felt for a pulse, and I couldn’t even tell if his heart was still beating. I couldn’t lift Joe; I couldn’t even hold up his upper body to keep him from falling over. I had to have help. I called 911. You don’t realize how terrified you are until you reflect back on your emergency calls. I was saying pathetic things like, “Please hurry. Tell them to come quickly. I’m scaaaarrrrrreeeedddd!” Now, in my rational mind, I know that the dispatcher was not going to tell the ambulance driver, “Drive faster. This sick person has a scared wife.” But, when you’re scared and desperate, you just want to do all you can to try to get help.

The paramedics showed up in under 15 minutes, and they loaded up Joe. During this time he started vomiting. Given that he couldn’t move without fainting, that meant there was a huge mess but it was hardly the time to worry about that. I had to follow the ambulance to the ER which was a little terrifying because I was battling my own need to faint. We arrived at the ER; Joe was taken back for a head CT because he had bumped his head. It was all absolutely terrifying.

Here’s the thing. I’ve been in Joe’s place. I’ve been the one that is sick and hurting. I’ve been the person waiting to hear results from scary tests, but I’ve never been the spouse of that person. It’s HORRIBLE. I would have selfishly traded places at any point. When you’re sick, all you have to do is be sick. You’re in survival mode. You just keep breathing and hoping the pain goes away soon. When you’re the spouse, the weight of the world is on your shoulders. In my case, the weight of the world was on my broken down, faint, and nauseous body. I had to be Joe’s advocate. I had to make sure he was getting the best care possible. I was in charge of telling the nurses when he needed more nausea meds or needed another blanket. I had to ask for help getting him in and out of bed if he went to the restroom. I had to contact family members and update them on Joe’s condition. I had to remember to ask someone to take care of our dog. Those were my jobs.

Ultimately, Joe was fine(ish). He had a terrible stomach virus. We knew he had been exposed to a virus, but we didn’t expect it to present so dramatically if he caught it. He was released after a very long and frightening night in the ER. He came home, and I had to be in charge. I had 2 surgeries within 7 days, and I was still the healthiest person in the house. I had to be the one to clean the massive mess from Joe’s middle of the night sickness. I had to set alarms and take Joe medicine. I had to ignore any issues I had going on for a few days to deal with the more pressing issue at hand.

Joe was so terribly and frighteningly sick. I would never wish the terror of checking for your spouse’s pulse on anyone. It was awful. I’m nauseous just thinking about it. But in the most terrible times of life, there are moments of clarity. Joe is my husband. I made a vow to him and to God that I would always do whatever I could to love him completely. In that one horrible night (and a few days that followed), I was Joe’s lifeline. I had to put my own “woe is me” health concerns on the back burner, because it was most important that I care for him. I also realized that Joe is required to drop all his concerns to care for me pretty often. I didn’t realize how that feels. I didn’t know the stress of having to be an advocate, and a caregiver, and communicator for someone who is too ill to do those things for himself.

Coming out of this experience, I have a new respect for what my husband and family have had to do for me many times. Caregivers have a tough and unenviable job. I also have a new respect for what my body can do. I often feel like I’m not very useful to anyone. Even though it was a terrible way to have to prove this to myself, I was so very glad that when Joe needed me I was able to step up to the plate. The last few days I keep saying that I don’t understand WHY I am so exhausted, but as I write this I realize I probably have plenty of reason to feel extra tired.

Yes, I get it. This isn’t as light hearted as most of my posts, but it’s been such a huge part of my life lately that I wanted to share it with you. I promise, we’ll get back to making fun of all things sick-ish soon.

Peace, love, and health, friends.

It’s my Sick-iversary! Please send balloons and cake! Plus, a fun announcement.

Four years ago, this happened, and it began this entire crazy, chronic journey that I have been experiencing. In terms of adventures, it has been one that I could have never fathomed happening to me. But life happens. You deal with it, and try to remain as normal and unscathed as humanly possible. I’ve learned a lot, and cried a lot, and lost a lot, and gained a lot during this journey. And, although I would cure myself in a heartbeat if given the choice, I accept what has happened to me, and I like the person I am becoming.

For a long time after becoming sick, I bemoaned the unfulfilled dreams in my life. I’m super dramatic, so I truly grieved missing experiences that I probably would have never wanted to have if I had been super healthy. “Why me? Why did I have to give up my career? Why did I have to give up my dream of being a mother? Why did I have to give up my dream of being the first teacher to teach a middle school class in space????” (Okay, that last one wasn’t my dream, but if it had been . . . well, I’m pretty sure I would have had to give it up. Honestly, who wants pre-teens in space anyway?) What I have learned, however, is that when one dream is taken away, we are blessed with new dreams and passions to fill its place.

I would never in a zillion years have believed I had enough to say to start a blog, but here it is. (It’s only fair that I admit that I have PLENTY to say- just ask Joe-, but it’s not typically anything any sane person would want to hear!) The blog has made me dream even bigger . . . I have the secret dream (okay, scratch that, it’s not a secret any more) of some day writing a book that would encourage (and provide chuckles for) chronically ill patients like me. Will it ever happen? Who knows? But I am glad that I have reached a place in my life where I can see hope and possibility in the midst of the devastation of illness.

New dreams come from new passions. From the time I was 12-13ish, I wanted to spend my life working with children. I truly love kids. They’re hilarious and awkward and small and smelly (so far I’ve described myself, I think) and just so very fun. But . . . life happened, and chronic illness happened. Not only am I no longer able to teach, I’m truly no longer capable of working with groups of children. I mean, who wants a Vacation Bible School teacher, or cheerleading coach, or church nursery worker that is afraid to touch children for fear that her shoulder or hip will dislocate, and she’ll drop a child or fall over and crush him/her? I’ve become a bit of a liability. What is amazing, however, is I don’t really miss working with children like I thought I would. Don’t get me wrong. I still love kids, and if you sit next to me in a restaurant I WILL try to make friends with your kids. (Oh yeah, and if you have a baby, I’ll befriend you just in hope that your baby will wave at me or talk sweet baby gibberish to me.)

I have a new passion, however, for a group that gets far less attention than children- the chronically ill. (I realize I basically just said, “I love people like ME!” but stay with me for a minute.) My own chronic illness journey made me realize what a lonely and frightening voyage it can be. At the hardest and scariest time of my illness, I would sometimes go weeks with no one to talk to but my husband and my mom. I don’t believe that everyone else was intentionally ignoring me, but a sick friend that just doesn’t get better is awkward. If you have a friend that has surgery, it’s easy to know what to do. Check on them while they’re in the hospital; bring them food once they’re home; maybe even offer to help them around the house until they’re better. Because, you know, they will heal and get better eventually. With chronically ill friends, well, we’re just stuck in a cycle of sickness where there are good days and bad days, but all the days are health focused. Let’s be honest, we’re a bit of a drag at times.

But . . . I think we’re awesome. We fight a battle every day, and we know that the next day is going to be a new battle. We pretend we feel fine (even though everything hurts) for other’s comfort, and we do our best to hold it all together. Eventually, it’s my dream to host an actual real live group of chronic illness sufferers. I’m not sure I love the term “support group,” but it’s the best I’ve got for now. (Oh brain fog, why must you torture me?) Ultimately, I want to encourage others who suffer from chronic illness (physical illness, mental illness, or whatever plagues you). I want to check on them after scary doctor’s appointments. I want to encourage them to find ways to help others. I want to laugh together at absurdity that is this crazy, chronic life.

So . . . for now, there’s not a real, physical group, because my crazy, chronic family is spread all over the world. But I DO want to know you better and give you a place to connect and encourage. Here’s the fun announcement (It’s been a rough few days. I apologize if this is a sad excuse for “fun.”), there’s a Crazy, Chronic Life facebook page. I moderate the page, but it’s not MY page. It’s all of ours. Feel free to join by clicking the link below.

Fun Facebook Group

I am so excited to meet more of you. Please know that each of you has made this sick blogger from Kentucky’s dreams seem more possible.

Peace, love, and health.