Category Archives: husband

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.

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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.

Wedded Bliss Can Be Hit or Miss

There was a moment in the first months after Joe and I married that I realized that the whole marriage process had left me completely unprepared for marriage. I was cleaning the bathroom floor in our teeny apartment (Seriously, do males think the toilet is merely a suggestion for their urinary pursuits?), and the absurdity of the whole dating/ engagement/ wedding process hit me. Joe and I had a great time dating. We went to sporting events, festivals, historical landmarks, . . . truly anything and everything we wanted to experience together we did. Then there was the engagement/ wedding time. It was filled with teas and brunches, hair appointments and fake nails, vows and ceremonies. And, essentially, none of those things occur in real life. Real life (at its rawest and most real anyway) is filled with laundry, mystery stains on the bathroom floor, and the never-ending need to prepare another meal.

Don’t get me wrong. Marriage has enough redeeming qualities to make up for the gag-worthy moments. It’s a great feeling to know that your best friend will be beside you as you fall asleep at night or that the person who always makes you laugh will be joining you for dinner forever. I wouldn’t trade all that marriage is in order to get rid of the responsibilities that come along with it. I just realize there is very little leading up to marriage that has anything to do with the actual act of being married.

Before I got married there was a bridal brunch- now there is coffee and Facebook.

Yep. There was a legit bridal brunch in my honor before my wedding. There was a yummy coffee flavored punch out of a beautiful crystal bowl. I wore heels and pearls and wiped my mouth on dainty embroidered napkins. I was fairly confident I had reached the pinnacle of being a lady. Now, I stumble out of bed at the last possible minute I possibly can and still make it to wherever I have to go. I wear an odd assortment of Joe’s clothes (because boy sweatpants and t-shirts are the most comfortable articles of clothing ever). I drink coffee (or I make coffee and leave it setting next to me because I’m too tired to remember to drink it) and peruse Facebook statuses in silence. I don’t talk, and if Joe speaks (or God forbid, sings) I grunt in response.

I was given a beautiful collection of silver, china, and crystal. We use paper towels as much as possible.

When you get married you get a lot of gifts that you will probably never find a reason to use. I remember receiving beautiful crystal pitchers and china pieces and imagining the elaborate dinner parties I was going to have. Yeah, um no. I’m not a huge fan of plastic/ styrofoam plates since they’re far from environmentally friendly, so we rely on a lot of paper towels . . . or anything dishwasher safe.

That beautiful bridal wardrobe is irrelevant in real life.

I have an awesome collection of dresses that I bought during the time leading up to my wedding. I recently loaned all those dresses out for a couple months, and I can honestly say I didn’t miss them once. All those beautiful pastel dresses are just not necessary for my life now. I haven’t had on high heels in years, and it would probably take me the better part of a day to remember where I put my pearls. During my engagement I bought those dresses because that is how I imagined a “real grown up” would dress. Yeah, I’m living real grown up life now, and it’s all about what is clean and what is comfortable.

There were solemn vows and a reverent, “I do.”

Again, don’t misunderstand. I meant every word of the vow I made to my husband. I have every intention of holding up my end of “for richer or poorer, in sickness and in health . . .,” but I had no idea what any of those things meant. I thought sickness was a temporary thing that happened then got better- or that it didn’t happen for a really long time. I thought that people were either rich or poor or somewhere in the middle- not that life went in cycles of relative comfort and then just way too many bills.

In truth, I thought life would keep running along just as it had been during dating and engagement. I knew there would be laundry and meals to cook, but I didn’t realize I would be trying to do those things (with my husband’s help- I’m not insinuating that I’m on my own in all things domestic) with absolutely no energy. I didn’t know that in order to keep up with the speed of our dating lives I would be expending every ounce of vitality and enthusiasm I possess. Life is manageable, but it’s just so very different from what I imagined.
A wedding is a bizarre way to start a marriage. It would probably be more appropriate if the soon-to-be- wed couple spent a week on the clean-up crew of a high school football camp. I mean, at least there would be a little more on the job training for the messiness of life than what a wedding offers. However, because we are all a bit unprepared when we get married . . . that means it’s not just me. I’m not the only one that jumped into the deep end and can barely tread water!

You see, when I became sick after I got married, I was so ashamed. I felt like I had tricked Joe, because I changed so much after he married me. It seemed only fair that I should remain the same person I had been throughout our dating life, but illness took that from me. There were so many times that I have wished I could go back before the wedding and tell Joe all that I know that- at least then he could make an informed decision.

It has occurred to me recently, however, that none of us really know what we are doing when we get married. We all enter marriage with the absolute best intentions. We plan to love our spouse the best way we know how, and we try and fail and try again and succeed a million times on our way to that goal. I’m not saying I will never feel guilty again that I stuck Joe with a chronically ill wife. There will be those days from time to time. I am saying that I have forgiven myself for getting sick and all the ways it has affected those around me. Yes, I surprised Joe by becoming sick (and staying sick) in the first couple weeks of our marriage. But, then again, I probably surprised him a million other ways too.

So, yeah, there have been a lot of surprises after Joe and I have gotten married. I wake up super grumpy. Animated movies make me cry. I get up multiple times during the night to brush my teeth. I only own about three pairs of socks. Joe forgets to close drawers after he opens them. He refuses to sleep under a sheet (but will sleep under a blanket?). He puts ketchup on green beans and doesn’t like dessert (more for me!). Obviously, some surprises are more fun than others, but I’m enjoying our life together- so I’ll deal with the surprises as they come.

Peace, love, and health.

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Crazy, Chronic Support for Crazy, Chronic Lives

Oatmeal in My Brain . . . and other brain foggy problems

Brain fog. Just . . . ugh. A lot of my chronic illness friends suffer from brain fog. For me, when I’m upright too long, my brain doesn’t get enough blood flow. Do you know what brains REALLY need in order to function? Blood flow. Yeah, it’s a bit of a conflict of cranial interest. For other chronic illness friends, the reason why they have brain fog may differ (neurologic issues, pain, etc), but having a brain that sometimes feels like a bowl of overcooked oatmeal is still a very real and frustrating symptom. However, I realize that my friends who don’t deal with this symptom may have no idea what I mean, so I want to explain what brain fog is to the rest of the world.

Brain fog is . . .

– The complete inability to give accurate directions. I recently told my older brother to meet me in Wal-Mart’s parking lot. I sat in McDonald’s parking lot for twenty minutes (all the while complaining to my husband that my brother is always late) before he called, and I realized I had sent him to the opposite end of town. Apparently my brain foggy brain things Wal-Mart and McDonalds are one in the same.

Brain fog is . . .

– Becoming a babbling fool when you’re trying to remember a word. I had to fill out a form for a background check before working with children at my church (Everyone does that. My church didn’t just decide I looked extra sketchy.). When I turned the form in I completely forgot the words “paper,” “form,” and “background check.” So instead I said, “Here is my . . . and I filled it out . . . and it’s on there . . . and please just take it.” I’m pretty sure after that hot mess of an explanation, no one wanted me to work with their children. Sometimes I feel like I should wear a sign that says, “I’m not using drugs. My brain is just in desperate need of more blood.”

Brain fog is . . .

– surprise emotions. Sometimes Joe and I are having a conversation about the most boring of topics, and my brain goes into “I don’t know what to do, so I’ll just make her cry” mode. It shocks me as much as Joe. One minute he’s asking me if I checked the mail, the next I’m wiping tears and trying to communicate my completely inappropriate emotions. The thing is, I don’t even know why I’m crying; it just . . . happens. Poor Joe . . . sometimes he just buys me ice cream, and I’ll be honest, that never hurts.

Brain fog is . . .

– going to the grocery store EVERY SINGLE DAY because I can’t remember to get everything when I go. I know what you’re thinking- Why not write a list? I’ve tried that, but reading a list isn’t exactly one of my skills- when my brain isn’t getting any blood flow! I’ll look at my list and think, “Yep! I’ve got it all!” When I get home, there are clearly items that haven’t been marked off the list. Joe asked me every day for a week to buy deodorant for him. I would go to the store and just forget every time. After a week of wearing my baby powder scented women’s deodorant, he finally just bought it himself. For the record, just because it says, “Strong enough for a man . . .” does not mean the scent works well for a male.

Brain fog is . . .

– basically, a total pain in the neck. Before my days of brain fogginess, I was occasionally absent minded. Now? I’m completely mindless at times. It’s okay; it gets better when I lie down. But, you know, lying down in the grocery store or at church or wherever other people gather isn’t exactly normal either.

I’ve learned while dealing with all this, however, to just give myself a break. It’s okay to laugh about it; it’s even okay to cry about it or get mad. It’s just a part of this crazy, chronic life that I’m living. So . . . to my crazy, chronic friends that also deal with brain fog (oatmeal brain)- write lists; set phone reminders; make plans, but don’t stress. It’s okay if you’re a hot mess sometimes. Sit down. Rest. Drink some water, and get back in the game.

Peace, love, and health friends.

Developing Selective Hearing (and other priceless chronic illness skills)

Words can hurt- maybe not quite as much as chronic illness, but they can definitely hurt. I was in a situation recently where a well- meaning person said something completely hurtful about how I manage my illness . . . and they were just making conversation. This person did not mean to hurtful or judgmental; they truly felt that their comments were helpful. They weren’t . . . at all. I realized there were a few ways I could handle the situation; I could get my feelings hurt (and maybe say something equally hurtful in retaliation) or I could trust that the person was not trying to be hurtful and gently educate about the nature of chronic illness. Obviously, the latter was the better choice, but it isn’t always easy to treat others with grace and kindness . . . especially if you feel misunderstood.

In the past few weeks alone, I’ve had people comment on me not working (when I look “completely fine”). I’ve had people tease my husband about not standing at an event when he was sitting with me because I couldn’t stand long enough to participate (Don’t worry. It wasn’t the national anthem or anything that was worth the health sacrifice.). Over and over, I have felt like I had to bite my tongue to keep from lashing out at people who truly don’t understand. I don’t want to be so hyper-sensitive to what everyone says that I cannot be around non- chronic illness people without feeling hurt or judged. I realize that not everyone can understand what I deal with, because they haven’t had the same set of circumstances. I’m glad they don’t understand; if they did, that would mean they’re stuck on this journey too. So, in an effort to remain a social being in the world of well people, I have decided to develop selective hearing. I don’t mean the type of selective hearing developed by husbands (“What? You wanted me to put my dishes in the dishwasher? You never told me.”), but rather, a type of selective hearing that will allow us to hear what people mean instead of the crazy (or hurtful) things people say.

What people say: You don’t look sick.

What I hear: You must not be sick. You look fine.

What I will choose to hear: Holy cow! You look incredible! I don’t know how you continue to look so fabulous when you feel so terrible!

(Yes, I realize I’m stretching the meaning a little. But, if I’m going to alter what others are saying, why can’t I give myself a little confidence boost in the process?)

What people say: Have you tried . . . . (insert diet, supplement, miracle pill, Billy Bob’s Magic Elixir, etc.)?

What I hear: If you really wanted to feel better, you would try whatever goods I’m peddling or method I’m supporting.

What I will choose to hear: I truly want you to feel better, and I’m suggesting thing in hopes that something would help you.

What people say: Have your doctors still not figured out what is wrong with you?

What I hear: If your doctors really knew what was wrong with you, you would be getting better. Doctors fix sick people. You should get better doctors.

What I will choose to hear: I regret that this is a chronic condition with no quick fix.

What people say: Wow, you live like a little old woman.

What I hear: Wow, you live like a little old woman.

What I will choose to hear: Wow! You look incredible (and not at all old!) while battling a chronic illness that has reduced your ability to live like the rest of us.

(Again, probably a stretch, but this is all taking place in my head. I can embellish!)

To my chronic illness friends, there are some people that are just jerks. Avoid them. People who say things with the intention to hurt you aren’t worth your time. Don’t invest what precious little energy you have on those people. The people in your life who truly mean well but say insensitive things, try to give them some grace. They can’t understand, and we don’t want them to ever experience this in order to empathize. It’s okay to gently educate. I’ve lost count of how many times I’ve had to say, “My illness is chronic, so I deal with it every day. Some days are better than others, though. Thanks for checking on me.” It’s okay to gently correct- “It isn’t my doctors’ fault that I am not better. I have an illness that does not have a cure, so all my doctors can do is manage my symptoms.” It’s also okay to just change the subject. “You know, I get tired of talking about being sick. Let’s talk about something that really matters- ‘Is that dress black and blue or is it really gold and white?’” (If you missed “the dress” internet phenomenon, I don’t advise looking for it.) Most of all, don’t burn bridges with the people that mean well. If a person cares enough to bring up your illness, they might be worth keeping around- even if they are a little clueless.

To my non-chronic illness friends, I’m sorry that I’m sensitive. I’m sorry that I misconstrue thing you say into something hurtful. Please keep talking to me anyway. I would rather you say a hundred accidentally offensive things to me than give up on our friendship. Thanks for trying.

Now for the fun part, chronic illness friends, what question or comment do you hear that drives you crazy? If so, share it in the comments.

Peace, love ,and health friends.

Crazy, chronic relationships require communication.

Yes, I know. All relationships require communication. I’m not suggesting my healthy friends give up communicating with their spouses/ significant others. I am, however, suggesting that my chronic illness friends recognize how crucial a role communication plays in their relationship.

I had a Cricket doll when I was a kid (A talking doll of the early/ mid 80s- If you remember Cricket, you and I are instant besties!), and I still remember my favorite line from the creepy, robot-like doll- “Do you wanna know why I talk so much? It’s because I have so much to say!” Yeah, that’s me. I am typically an over-communicator. I talk about my breakfast choices, my dreams, current problems with fixing my hair, my views on kale, pretty much anything that bounces through my mind. The thing is even though I talk a lot, I don’t necessarily say what I’m really thinking. Sharing what is really going on requires vulnerability. It requires me to trust that Joe will be able and willing to meet my needs. And, honestly, even though we have been on this crazy, chronic illness road for a while now and have gotten pretty good at understanding each other, sometimes the wheels of the communication truck fall off . . .

A few weeks ago I had an appointment with a geneticist, and I was quite nervous about it. See, when you have POTS, you typically have some sort of underlying cause. Basically, POTS is a syndrome that happens as the result of another illness (not always, but this is often the case). It’s frustrating because it’s difficult to find a doctor who understands POTS well enough to diagnose it, and even once POTS is diagnosed you have to keep putting pieces in the puzzle to figure out why you have it. I was referred to a geneticist to investigate any underlying conditions.

I was nervous for a number of reasons. There’s the obvious, “Oh my goodness, please don’t give me any terrifying or devastating news” reason to dread a doctor’s appointment. However, when you are a generally healthy looking 30 year old female, a lot of doctors don’t seem to take you seriously- which is an incredible waste of time and resources. Anyway, the doctor was wonderful. He took me seriously, and he was able to pinpoint my condition just from my family and medical history (which he confirmed through a clinical evaluation). I was diagnosed with Ehler-Danlos Syndrome (http://ednf.org/hypermobility-type)- EDS is a condition where the body makes faulty collagen. As a result, joints are lax (because the ligaments holding them together are made from poorly formed collagen) causing incredible joint pain and other systems throughout the body are also negatively affected. (Did you know that every system in the body requires collagen? Who knew?)

So, this basically, sort of, stinks. Because POTS occurred as a result of a lifelong, genetic condition, it is unlikely I will recover from it. Not to mention the inevitable lifetime of joint pain and dislocations that comes along with EDS. It’s a lot to wrap your head around. However, I wanted to avoid a meltdown. So, when Joe and I left the appointment I said, “That was a great appointment. I loved the new doctor.” That was all true. The appointment was everything I needed it to be. It was informative and conclusive. The doctor was helpful and kind. None of that changed the fact that I was still reeling from a new diagnosis, though.

What happened next was completely my fault, but my intentions were good. I gave Joe the most positive spin ever on a doctor’s appointment (I mean, he was in the room with me. I just assumed he already felt gut-punched by all the scary stuff.). As a result, as we drove the 2+ hours home from the doctor, I poured through the information the doctor had given me about EDS while Joe called people and kept telling them how we had had a wonderful appointment. Hmmmm . . .

Again, this really wasn’t his fault. I didn’t share my concerns with him. He wasn’t in my seat reading about aortic aneurysm risks or organ ruptures. He wasn’t imagining a life of chronic debilitating pain or wondering how much more pain he could deal with before he just couldn’t deal any more. Nope. All Joe had to go on was, “That was a great appointment. I loved the new doctor.”

What happened over the next few days was a continued downward spiral. Because Joe had to miss work to take me to the doctor, all of his coworkers knew about my appointment. As people asked about the appointment, Joe kept assuring them it went really well. And, it did. Or at least that’s what I said. Or maybe what I wanted to believe. I don’t really know. I only know that I felt more and more isolated every time I heard Joe give the good report. I spent a couple days feeling all sorts of emotions- all sorts of alone. I was hurt that he didn’t understand how I felt. I was angry that I had misled him so badly. I was completely confused about how to fix the mess.

You can probably guess how this ends. I was hurt and angry and defensive, and Joe, well, he was clueless. My husband is the most intelligent man I know, but even he can’t read minds. I was able to communicate how I was feeling, and Joe (in a way only those of you in a committed relationship can understand) apologized for doing something that he wasn’t even aware of doing. Was there anything for Joe to apologize for? No, of course not. The problem was my own creation. However, I created the problem out of an effort to stay positive- an effort to make him (and maybe me) believe that I wasn’t freaking out.

The moral of the story, crazy chronic friends, is to be honest. Be honest with yourself, first of all. If you are scared of a diagnosis, a new symptom, or whatever, don’t try to fake it. It won’t help. Admit that you will probably need some emotional support. Then, be honest with whomever you are trying to maintain a relationship with. I should have said, “Okay, Joe. That scared me. I’m going to need some support while I wrap my head around a new diagnosis.” My first few days (and weeks) following diagnosis would have been a lot simpler. Heck, he might have even offered support by means of chocolate, and that would have made everything better.

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. 🙂