Tag Archives: Marriage and relationships

I can’t. I’m raising a chronic illness.

It’s only fair that I begin this in the most appropriate and reverent manner possible, so I’ll begin by saying that moms are rock stars. Seriously, if you’ve stuck with and cared for  a child through all of their horrible ages and phases, you’re a hero. I don’t know how you did it; I can barely remember to put out fresh water for my dog, Zoey. If you’re struggling with a chronic illness and still managed to take care of a child (or, good grief, multiple children), you’re a super human, and I have total respect for all you do. So please, momma friends, don’t judge me to harshly for referring to myself as a “mom.” I realize I don’t know your struggle.

Now . . . having said all that, I don’t fit into any logical groups for people my age. Working women? Nope. My main job is the care and management of my health- and keeping Joe from looking really mismatched and disheveled. Motherhood groups? Yeah, I have a dog- no tiny humans. However, the more time I spend around mothers the more I realize that my chronic illness acts remarkably like a toddler. (Don’t take this analogy too far, folks. A child is by no means a disability- I’m just having a little fun here.) Here are things I’ve heard mommas say lately that I’ve oddly identified with from my life of “raising my chronic illness”.

I would have loved to come, but [insert cutesy toddler name] needed a nap. She just won’t behave without one.

I feel ya, girl. The last time I didn’t give my chronic illness (and, you know, me too since we’re connected) a nap before we went out among people, I ended up whimpering in a bathroom floor. I also missed the event, because my symptoms were having a diva moment. My illness is a bit of a monster like that. If I don’t let it rest before we venture into public, it will throw a tantrum that rivals any sleepy toddler’s meltdown.

For the last UT home football game (my husband, Joe, is a SUPER FAN and season ticket holder), Joe and I met friends for lunch before the game . . . and by the time lunch was over, I was FINISHED. I was tired, my chest hurt, and I felt like I could cry if anyone looked at me. I ended up giving away my ticket and going back to the hotel to take a nap instead. Have you ever heard of anyone over the age of 5 who misses events they’ve looked forward to because they need a nap? Nope, me neither. Thanks, chronic illness. You couldn’t behave for a couple hours.

I can’t stay out late. The baby will get restless.

Yep. Anything longer than half an hour, and I’m a wiggly mess. I suppose this is a little different than taking a toddler into public. I mean, toddlers struggle because they have a short attention span. I don’t exactly have a remarkable attention span, but the real problem is sitting still. If I’m sitting for more than half an hour, my blood will pool, and I’ll feel faint. My ribs will shift, and I’ll feel like I can’t breathe. I’m a mess. You know those kids at church or the movies that pace back and forth/ up and down the aisles? I’m one step away from being right behind them.

Recently, Joe and I met a friend (a fellow POTSie) in downtown Nashville to listen to music. She and I (and our illnesses) behaved beautifully through dinner. When we tried to listen to music, we were both falling asleep in the booth. My poor husband looked like he had drugged two women and brought them out for the evening. Nope. Just tired. So tired.

Just as we were going out the door, she threw up all over me!

Ughhhh . . . yeah, I get it. Babies can be gross sometimes, so can chronic illnesses. For every time a mother has gotten ready to go somewhere and been unexpectedly covered in a smelly bodily fluid brought forth by her toddler, yeah, it’s happened to me too- except, you know, it was my own body that was expelling its contents. Chronic illnesses are messy and unpredictable- just like babies.

Once, Joe’s dad was giving the commencement address at a graduation ceremony, and Joe was supposed to introduce his dad and give the opening prayer. What did I do? I started projectile vomiting minutes before they were both going on stage. Fortunately, I was able to regroup, drink some water, and make it through. But right up until the minute the program started everyone was more worried about my diva disorder than the event we were there to celebrate. Yeah, vomit ruins everything. It just does.

Can you tell I’ve had fun coming up with similarities between my illness and a cranky toddler?

Of course, there are a number of reasons that I would rather raise the crankiest toddler than deal with illness, but clearly I haven’t been given that choice. I mean, toddlers have their redeeming qualities- they’re cute; they say funny things; they will likely grow into something in which you can take pride. I have serious doubts that my illness will ever do any of those things. For now, though, I’m okay with laughing at the similarities between the two. So, the reason I can’t go to the movies or on a long road trip? I can’t. I’m raising a chronic illness.

Peace, love, and health friends.

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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.

20 Lessons from a Former 20-Something

Okay, so I’m 30 now. I’m entering into the fourth decade of my life . . . and I’m pretty pumped about it. If I’m being totally honest, 30 sounds still sounds strange. I was really good at being a twenty something; it gave me a great excuse to act like I knew everything while I was convinced that I actually barely had the skills required to brush my own teeth. Thirty is different though; I can no longer hide behind my youth to excuse my faults. I’m pretty okay with that though. See, my twenties were rough. They were filled with some serious highlights like graduating college, getting a masters, and marrying Joe. But there were way too many doctor’s appointments and hospital stays, surgeries and procedures for me to pretend that it was all one big party. So, here I am- a crazy, chronic 30 year old, sharing with you the little bit of knowledge I gleaned from my twenties that I think will make navigating my thirties slightly less painful.

1.Life isn’t a to do list. Success isn’t measured by who checks off the most things (weddings, degrees, having kids).

2. People will come in and out of your life. Enjoy them while they’re there. If they’re gone, it’s not necessarily personal. Life just happens.

3. Any food that comes with microwave directions is probably not healthy.

4. There are worse things in the world than not having anything to do on a Friday night. (And sometimes the worst feeling in the world is realizing you have to do something on a Friday night!)

5. Sometimes you do everything right, and things still go horribly wrong. It’s not your fault.

6. It doesn’t matter if you hit your perfect “goal weight.” You’ll find something else to be insecure about.

7. Dating is fun but shouldn’t be taken too seriously. When the “right guy” walks into your life everything just happens naturally.

8. Doctors are human. Yes, they’re highly educated and very intelligent, but sometimes (just like the rest of us) they are insensitive, or grumpy, or poorly informed.

9. Energy isn’t necessarily a renewable resource. If you have the energy to do something now- Do it now! Life and circumstances can change in a heartbeat.

10. The first year of marriage isn’t as terrible as everyone told me it would be. Basically it’s like having a slumber party with your best friend that never ends- except, you know, there’s work and bills and cleaning to do.

11. Acting dumb is never cute. (It just isn’t, and I’m so embarrassed that I didn’t always know this.)

12. Life is hilarious. Things just keep happening, and you have to laugh or you’ll lose your mind!

13. Mom was right. I look better when I wear lipstick. (I say those first 3 words far more than I care to admit.)

14. Your health is a gift that you don’t fully appreciate until it becomes more unpredictable. (Even then, appreciate the good days.)

15. When you’re feeling desperate and you have absolutely no idea how to help yourself, help someone else. There’s power in meeting someone else’s needs.

16. No one will ever understand exactly how you feel, and that’s totally okay. The people that matter will be there for you regardless.

17. The people you love the most will say insensitive things that break your heart . . ., and they won’t even realize it. Give them a break.

18. Some days the only prayer you can muster is, “Please Lord, help me be nice.”

19. Sometimes foods that aren’t healthy for your body are healthy for your soul (but that doesn’t mean I should live on a steady diet of my Mom’s chicken and dumplings).

20. Be kind to everyone. You will never meet a person who isn’t worthy of kindness. Conversely, when you are treated poorly, it isn’t reflective of your worth. You deserve kindness as well. 🙂

Okay, 20 seems like an appropriate place to stop. I learned a lot from my twenties. I learned more than I could have ever imagined I would. I had educational and professional victories. I landed my dream job and married the man of my dreams. I also spent months almost  completely bedridden and relied on a wheel chair to visit my favorite stores in the mall. I feel like it’s time to start a new decade. I am ready to learn the lessons that my 30s will inevitably teach me, and I’m ready to leave some of the traumas and dramas of my 20s behind.

Peace, love, and health friends. 🙂